[Senate Hearing 111-1154]
[From the U.S. Government Publishing Office]
S. Hrg. 111-1154
EXAMINING THE CONTINUING NEEDS OF WORKERS AND COMMUNITIES AFFECTED BY
9/11
=======================================================================
HEARING
OF THE
COMMITTEE ON HEALTH, EDUCATION,
LABOR, AND PENSIONS
UNITED STATES SENATE
ONE HUNDRED ELEVENTH CONGRESS
SECOND SESSION
ON
EXAMINING THE CONTINUING NEEDS OF WORKERS AND COMMUNITIES AFFECTED BY
9/11, INCLUDING S. 1334, TO AMEND THE PUBLIC HEALTH SERVICE ACT TO
EXTEND AND IMPROVE PROTECTIONS AND SERVICES TO INDIVIDUALS DIRECTLY
IMPACTED BY THE TERRORIST ATTACK IN NEW YORK CITY ON SEPTEMBER 11, 2001
__________
JUNE 29, 2010
__________
Printed for the use of the Committee on Health, Education, Labor, and
Pensions
Available via the World Wide Web: http://www.gpo.gov/fdsys/
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COMMITTEE ON HEALTH, EDUCATION, LABOR, AND PENSIONS
TOM HARKIN, Iowa, Chairman
CHRISTOPHER J. DODD, Connecticut
BARBARA A. MIKULSKI, Maryland
JEFF BINGAMAN, New Mexico
PATTY MURRAY, Washington
JACK REED, Rhode Island
BERNARD SANDERS (I), Vermont
SHERROD BROWN, Ohio
ROBERT P. CASEY, JR., Pennsylvania
KAY R. HAGAN, North Carolina
JEFF MERKLEY, Oregon
AL FRANKEN, Minnesota
MICHAEL F. BENNET, Colorado
MICHAEL B. ENZI, Wyoming
JUDD GREGG, New Hampshire
LAMAR ALEXANDER, Tennessee
RICHARD BURR, North Carolina
JOHNNY ISAKSON, Georgia
JOHN McCAIN, Arizona
ORRIN G. HATCH, Utah
LISA MURKOWSKI, Alaska
TOM COBURN, M.D., Oklahoma
PAT ROBERTS, Kansas
Daniel Smith, Staff Director
Pamela Smith, Deputy Staff Director
Frank Macchiarola, Republican Staff Director and Chief Counsel
(ii)
C O N T E N T S
__________
STATEMENTS
TUESDAY, JUNE 29, 2010
Page
Harkin, Hon. Tom, Chairman, Committee on Health, Education,
Labor, and Pensions, opening statement......................... 1
Enzi, Hon. Michael B., a U.S. Senator from the State of Wyoming.. 2
Gillibrand, Hon. Kirsten E., a U.S. Senator from the State of New
York........................................................... 5
Prepared statement........................................... 7
Howard, John, M.D., Director, National Institute for Occupational
Safety and Health, Centers for Disease Control and Prevention,
Department of Health and Human Services, Atlanta, GA........... 9
Prepared statement........................................... 10
Merkley, Hon. Jeff, a U.S. Senator from the State of Oregon...... 16
Melius, Jim, M.D., DrPh, Administrator, New York State Laborers'
Health and Safety Trust Fund and Chair of the Steering
Committee for the WTC Medical Monitoring and Steering Program,
Albany, NY..................................................... 18
Prepared statement........................................... 19
Prezant, David, M.D., Chief Medical Officer, Fire Department of
New York City, New York, NY.................................... 22
Prepared statement........................................... 25
Fullam, Martin, Firefighter, Fire Department of New York City,
New York, NY................................................... 30
Prepared statement........................................... 31
Garcia, Margrily, Patient, World Trade Center Environmental
Health Center, New York, NY.................................... 32
Prepared statement........................................... 34
Nadler, Jerrold, a U.S. Representative from the State of New York 43
Prepared statement........................................... 44
ADDITIONAL MATERIAL
Statements, articles, publications, letters, etc.:
Senator Dodd................................................. 47
Senator Casey................................................ 48
Mayor Bloomberg.............................................. 48
Ann Warner Arlen............................................. 50
Response by John Howard, M.D. to questions of:
Senator Enzi............................................. 55
Senator Dodd............................................. 57
Senator Casey............................................ 58
Senator Franken.......................................... 59
Response by Jim Melius, M.D., DrPh to questions of:
Senator Dodd............................................. 70
Senator Casey............................................ 70
Senator Franken.......................................... 71
Response by David Prezant, M.D. to questions of:
Senator Casey............................................ 72
Senator Franken.......................................... 72
Response to questions of Senator Casey by Magrily Garcia..... 72
Letters of Support........................................... 74
.........................................................
(iii)
EXAMINING THE CONTINUING NEEDS OF WORKERS AND COMMUNITIES AFFECTED BY
9/11
----------
TUESDAY, JUNE 29, 2010
U.S. Senate,
Committee on Health, Education, Labor, and Pensions,
Washington, DC.
The committee met, pursuant to notice, at 2:40 p.m. in room
SD-430, Dirksen Senate Office Building, Hon. Tom Harkin,
chairman of the committee, presiding.
Present: Senators Harkin, Merkley, and Enzi.
Also Present: Senator Gillibrand.
Opening Statement of Senator Harkin
The Chairman. The Senate Committee on Health, Education,
Labor, and Pensions will please come to order.
I welcome everyone to this important hearing.
Nine years ago this September--we all remember that day,
and we all remember exactly where we were and what we were
doing when that happened--two airplanes flew into the World
Trade Center, burst into flames--3,000 people killed--watched
those building come down. All of our lives were changed
forever.
We'll never forget the images burned into our memories of
people running in terror, covered from head to toe in gray ash.
But, we'll also never forget the brave heroes who were running
in the opposite direction--the police, the firefighters, the
doctors, the emergency responders, bravely rushing toward the
cloud and the chaos. And we'll never forget the volunteers from
all across America who spent weeks at the site digging and
hand-sorting through smoldering debris, frantically looking for
survivors first, and later for remains to give closure to the
thousands of families who lost loved ones.
One, a young man whom I knew as a kid, his folks--his dad
was a minister in Iowa--was one of those lost in the Trade
Center. And also--I'm sure I can speak for many--a lot of our
firemen and emergency responders came from my State to go there
to do what they could to help out.
On 9/11, terrorists, determined to kill thousands of
innocent people, showed us human nature at its very worst. But,
the response to those attacks showed us not just the better
angels of our nature, but truly astonishing examples of courage
and selflessness and self-sacrifice.
On 9/11, in the days, weeks, and months that followed, many
thousands of people came to offer, as I said, their assistance
and expertise. Since those initial days, our Nation has
responded to the tragedy in a myriad of ways, both here and
abroad, obviously.
This committee is especially interested in learning about
the long-term health effects of the World Trade Center attacks.
As we all know, now, and some advised at that time, the
enormous rubble pile at Ground Zero emitted a toxic brew of
gases and fine particulate matter for months after the attack.
In the immediate aftermath, the city and Federal Government
tried to do its best to protect those who came to serve,
although we know there was also misinformation that was given
out about the safety of the dust at the World Trade Center
site. In the years that followed, we set up programs to address
health needs that we couldn't prevent, and I am proud that the
Appropriations Subcommittee, that I chair here, along with
Congressman Obey on the House side, has worked closely with the
New York delegation to meet those needs.
But, our work is not done. We're learning that the health
effects of the 9/11 disaster are far more extensive and more
wide-ranging than many people initially thought. A wide variety
of health effects have been observed in responders and
volunteers, local residents, and community members. These
conditions include respiratory and gastrointestinal problems,
as well as mental health effects. We'll hear from one such
individual today.
There have been many reported mental health effects,
including depression, anxiety, and post-traumatic stress
disorder.
In addition to these documented short-term health effects,
we're concerned about the potential long-term health effects,
including the possibility of higher rates of cancer. It is
critically important that we continue to study and address
these health impacts, both for the sake of the workers and
community members affected, so that we can apply the lessons
we've learned to other disasters, whether it's the Gulf Coast
oilspill or some crisis yet to come.
So, today's hearing is an important step in our continued
response to this crisis. It's about keeping faith with those
directly impacted by the 9/11 attacks, and meeting their needs.
I applaud Senator Gillibrand for her tireless leadership
and advocacy in this area.
I, again, also thank two members of the New York delegation
who I've asked to join us up here today, Congressman Jerry
Nadler, a long-time friend of mine, one of the senior members
of the House and of the New York delegation, representing the
8th District of New York; and also, Representative Carolyn
Maloney, another long-time friend of mine and a representative
of New York's 14th District. They obviously, along with Senator
Gillibrand, have been involved in this for, well, since 9/11.
And we thank you for that leadership, and welcome you to our
committee.
Senator Gillibrand introduced one proposal, the James
Zadroga 9/11 Health and Compensation Act of 2009, that's
currently before this committee.
More generally, I commend her and our two colleagues from
the House for their relentless efforts to address the needs of
the heroes and the victims of that day.
The committee looks forward to hearing from Senator
Gillibrand today, and learning more about her bill.
I also look forward to getting an update about the progress
of the various programs that currently serve the needs of those
exposed to the World Trade Center site, and how we can best
continue to meet those needs.
So, I thank the witnesses for coming today.
And I will yield to Senator Enzi.
Statement of Senator Enzi
Senator Enzi. Thank you, Mr. Chairman, and thank you for
holding this hearing.
On September 11, 2001, terrorists killed nearly 3,000
people in New York, Virginia, and Pennsylvania. The destruction
of the World Trade Center created a huge toxic dust cloud.
Emergency responders, recovery workers, and others who breathed
in the dust, developed lower and upper respiratory conditions,
sarcoidosis, reactive airway dysfunction syndrome, worsened
asthma, pulmonary fibrosis, post-traumatic stress disorder, and
other conditions. There are continuing concerns that latent
illnesses might appear decades from now. We are here today to
talk about the programs for these 9/11 health conditions.
Shortly after the attack, my wife and I visited Ground
Zero. We were deeply moved by the heroism of the emergency
responders and the recovery workers from all over the country.
They kept their promises, did their duty, and saw things
through to the end. They deserve the same from us.
In October 2006, I sent four members of my staff, along
with staff from the offices of Senators Burr, Clinton, Coburn,
Kennedy, Murray, Voinovich, and Schumer, to gather facts from
the Fire Department of New York and a number of the other city
departments, Mount Sinai Hospital, the victims, and others.
In March 2007, Senator Clinton and I held the first Senate
hearing on the long-term health impacts of 9/11. Drs. Herbert,
Kelly, Melius, and Stellman explained the medical and
scientific issues to the committee. After the hearing, a
bipartisan Help Committee working group was formed. It was led
by Senator Clinton's and my staff, and joined by the offices of
Senators Burr, Brown, Coburn, Dodd, Gregg, and Kennedy. One
goal of the working group was to try and learn more about the
program run by the Centers from Disease Control through the
National Institutes of Occupational Safety and Health, or
NIOSH.
We were especially impressed by the caregivers' expertise
and devotion to their patients, by the patriotism of the
construction companies and workers, and by the fire department,
the police, and union outreach, on post-traumatic stress
disorder and mental health. There are a lot of good people
doing a lot of good work.
At the same time, the working group had difficulty
obtaining basic facts about the NIOSH program. We learned that
NIOSH received $475 million in earmarks from the Appropriations
Committee from 2002 through 2010, then sent those funds to
grantees for monitoring treatment. When the bipartisan working
group looked at a sample of about $111 million that NIOSH sent
six grantees from 2004 to 2007, they saw that neither NIOSH nor
the grantees could produce detailed expenditure reports to show
how funds were spent. Several grantees could not furnish copies
of annual financial status reports, known as FSRs, that they
were supposed to send to NIOSH. One grantee told us they could
not document how the earmarks were actually spent, but they'd
be glad to go back and, ``assign costs,'' retroactively to the
spending.
Preparing for today's hearing, Help Committee staff again
asked NIOSH to explain how the funds were spent. NIOSH did not
answer, or make a good-faith effort to try to answer, the
committee's questions.
Senator Gillibrand and I spoke last week, and we agreed to
ask the Governmental Accounting Office to account for those
funds. I appreciate that these programs were set up under
extraordinary duress, and I'm inclined to give the grantees the
benefit of the doubt here. But, it does not build confidence in
the program when NIOSH can't answer basic questions about how
it spent half a billion dollars. I'll have some questions for
Dr. Howard about this.
9/11 victims deserve better.
Having said that, NIOSH programs are just one piece of the
puzzle, a second task of the working group was to inventory all
of the 9/11 programs, plus health and compensation systems that
were already in place, to see how all the pieces fit together.
We learned that the Federal Emergency Management Agency,
FEMA, used some of its 8-and-eight/tenths-billion dollars in 9/
11 funds for screening and recovery, and for mental health
counseling and assistance to hospitals, under the Stafford Act.
A Victims Compensation Fund, VCF, administered by Ken
Feinberg, paid out more than $7 billion to families of those
killed on 9/11, and about 2,000 workers with 9/11 health
claims.
Congress appropriated $50 million for the New York State
Workers Compensation system to respond to claims filed by
volunteers, that are not typically eligible for compensation.
New York State extended its filing deadline until September 11
of this year.
The full extent of the Department of Health and Human
Services programs is unknown. Through 2007, it looks like HHS
administered between $778 million and $1.01 billion worth of 9/
11 health programs through the Centers for Medicare and
Medicaid Services, the Health Resources and Services
Administration, the Substance Abuse and Mental Health Services
Administration, and the National Institutes of Health, and
NIOSH.
Within the NIOSH program, grantees can sometimes recoup
payments when patients are entitled to workers compensation,
disability, private health insurance, or public entitlements.
Going forward, we'll also want to understand how NIOSH programs
dovetail with coverage under the new healthcare reform law.
And earlier this month, a judge tentatively approved a
$712-million settlement for the 9/11 health claims. These funds
will come from the World Trade Center Captive Insurance
Company, an entity created by Congress specifically for this
purpose.
I hope this hearing will help us understand how all these
pieces fit together, so we can make sure heroes get the help
they need, and the community and taxpayers get the well-
administered program they deserve.
I thank the witnesses for coming, and look forward to their
testimony, as well as Senator Gillibrand.
The Chairman. Thank you, Senator Enzi.
I note there's a vote in the House, so our guests have to
leave here.
Well, we're joined today by an outstanding set of
witnesses. We'll have three panels. The first panel will be
Senator Kirsten Gillibrand, the junior Senator from New York.
And we welcome our esteemed colleague, here, who is sponsoring
this important bill. And I thank the Senator for her great
leadership in this area, first as a Senator, and then
previously as a member of the House of Representatives, for all
that you've done to meet the health needs of the people who
were affected by the disaster on 9/11.
So, we thank you for being here. Your statement will be
made a part of the record in its entirety. Please proceed as
you so desire, Senator Gillibrand.
Statement of Senator Gillibrand
Senator Gillibrand. Thank you very much, Chairman Harkin.
I'm extremely grateful for your leadership and for convening
this hearing.
I want to thank Ranking Member Enzi for his hard work over
these years, working with Secretary Clinton, and doing so much
hard work and analysis to ensure that the men and women who
need these funds are provided for.
I'm very grateful that you've taken the time to bring this
committee together to discuss the legislation to provide health
treatment and victim compensation to the affected first
responders and survivors of September 11.
I want to thank our witnesses--Dr. John Howard, the
director of the National Institute for Occupational Safety and
Health; Dr. Jim Melius, the administrator of New York State
Laborers' Health and Safety Trust Fund, and chair of the
Steering Committee for the World Trade Center Medical
Monitoring and Steering Program; Dr. David Prezant, our chief
medical officer for the Fire Department of New York City;
Lieutenant Marty Fullam of the Fire Department of New York
City; and Margrily Garcia, a patient at the World Trade Center
Environmental Health Center--for providing testimony on today's
bill.
We obviously can all agree that we, as a nation, have an
undeniable moral obligation to provide treatment for
individuals who are sick and dying because of the terror
attacks at Ground Zero. The responders and the survivors living
in the area were told by the Federal Government that the area
was safe. They removed debris and recovered victims with little
to no safety equipment to protect their lungs from the toxic
ash that invaded Ground Zero for months. They tried to return
to their normal lives, as best they could, because that is what
the Nation asked them to do.
I chose to have one picture today for my testimony. And
this is just a sense of the kind of contamination that was in
the air that the men and the women who were present when the
towers collapsed--you can see the amount of film on their
clothing, on their faces. That film was present in the air for
months afterwards. And so, this is something that people who
worked on the pile, day in, day out, breathed in, with very
little protective equipment.
And for the communities living in the area, there was
absolutely no protective instructions provided. Community
members were told, ``Go ahead, clean your apartments. You can
use a mop and plain old water.'' And for them to breath in
these toxins, day in, day out, from their furniture, from their
carpets, was something that has been devastating to their long-
term health. In particular, there were many children in daycare
centers, in schools, that were sent back to school very
quickly, who didn't have the benefit of real environmental
cleaning. And that's one of my primary concerns.
Just this week, I spent time with those parents. I met with
those community leaders. I met with those men and women who are
now struggling with these diseases. And as a parent with a
child who has asthma, I know how difficult it is for young
children when they do have grave respiratory illnesses, such as
asthma.
This tragedy is obviously beyond our comprehension. And our
failure, as a nation, to confront it should offend all of us at
the very core, to make sure that we provide the healthcare that
these families and first responders and survivors desperately
need.
My legislation will fulfill this moral obligation to these
heroes and those who have sacrificed their lives for our
country, and all the victims who are ill and dying, because of
the worst terrorist attack in our history.
Building upon the Centers for Excellence, S. 1334
establishes formal--formal--eligibility requirements, and
provides health benefits through a national network of
providers.
It also addresses some of Senator Enzi's main concerns.
This new bill will provide a level of accountability and
transparency in the disbursements of funds that we have not
seen up until this time with the current program. It terminates
the six billing systems created in the chaotic aftermath of
September 11, and will establish a third-party administrator
who will set the rates, track expenditures, and enforce
eligibility requirements.
It also creates a dedicated line of funding so the victims
can receive the consistent and 9/11-specific care that they
need for the illnesses that have been created.
Additionally, it would ensure that survivors are
compensated for their losses that they've experienced as a
result of these health problems connected to Ground Zero, by
reopening the Victims Compensation Fund.
I also have, for the record, Senators, about 20 letters
from community groups throughout our State and--that are very,
very moving--not only from our Governor, but from children who
have lost their parents. You know, one in particular, this is a
letter from Jennifer McNamara, who lost her father. You can see
the difference between this brave, very able and fit
firefighter from 2001, and how diminished, because of his
health conditions, he was by 2009. So, these letters are an
important part of the record, and I do hope you'll have the
opportunity to look through them. They're from community
organizations, from schools, from all the advocates who are
living this every day.
The Chairman. We'll make those a part of the record.
Senator Gillibrand. Thank you.
[The letters referred to may be found in Additional
Material.]
Senator Gillibrand. As we debate this bill, let us all
remember the lives of those we've lost, and the thousands of
survivors who are living and working in the area, and the tens
of thousands of responders that came from every single
congressional district in our wonderful country. We must
establish efficient programs to provide for their care and
treatment, and fulfill this moral obligation to them all.
The horrific damage of 9/11 did not end when the buildings
came down. For thousands of Americans, the horror and the pain
began weeks, months, and sometimes, years later. We must never
forget the way these men and women have sacrificed for our
country.
Thank you, Mr. Chairman. Thank you, Mr. Ranking Member. I'm
happy to answer any of your questions.
[The prepared statement of Senator Gillibrand follows:]
Prepared Statement of Senator Gillibrand
Thank you very much, Chairman Harkin and Senator Enzi, for
convening this hearing. I am incredibly grateful that you have
taken the time to bring the committee together to discuss this
incredibly important issue and my legislation to provide health
treatment and victim's compensation to the affected first
responders and survivors of September 11th.
Thank you to our witnesses Dr. John Howard, Director,
National Institute for Occupational Safety and Health, Centers
for Disease Control and Prevention, Department of Health and
Human Services, Dr. Jim Melius, Administrator of the New York
State Laborers' Health and Safety Trust Fund and Chair of the
Steering Committee for the WTC Medical Monitoring and Steering
Program, Dr. David Prezant, Chief Medical Officer, Fire
Department of New York City, Office of Medical Affairs, Lt.
Martin Fullam, firefighter, Fire Department of New York City,
and Margrily Garcia, a patient at the World Trade Center
Environmental Health Center, for providing testimony today on
this bill.
I hope we can all agree that we as a nation have an
undeniable moral obligation to provide treatment for
individuals who are sick and dying because of the terror
attacks at Ground Zero. The responders and survivors living in
the area were told by the Federal Government that the area was
safe. They removed debris and recovered victims with little to
no safety equipment to protect their lungs from the toxic ash
that invaded Ground Zero for months. They tried to return to
their normal lives because that was what our Nation asked of
them to do.
Now years later tens of thousands of these Americans are
sick and dozens perhaps hundreds are dying. Just this week, I
spent time with parents who had children enrolled in daycare
centers in the area. These children are now suffering from
horrible asthmatic conditions and could experience other
horrible health effects that we have only begun to discover.
This is a tragedy and our failure as a nation to confront
it is an outrage. My legislation would fulfill our moral
obligation to the heroes who have sacrificed their lives for
our country and all the victims who are dying from the worst
terrorist attack in our history by creating a fully transparent
system that establishes a long-term health program with proper
oversight and accountability.
My legislation would create a fully transparent system that
establishes a long-term health program that our heroes and
community survivors can rely on.
It would terminate the six billing systems created
in the chaotic aftermath of September 11th and establish a
third party administrator, who will set reasonable rates, track
expenditures and enforce eligibility requirements.
The legislation would require an annual program
report to Congress. And 3 years after enactment, the Government
Accountability Office would be required to report to Congress
on the cost of the program.
This bill would create the needed statutory
infrastructure to fulfill our moral obligation with a program
that is efficient, effective, and diligent with taxpayer funds.
My legislation also tightens the eligibility criteria that
an individual has to meet to be covered by this program.
LThere are specific times that a responder or
community survivor would have had to have been in Lower
Manhattan. Individuals would only receive assistance if
they are diagnosed with a condition from the list of
covered ailments, such as Chronic Respiratory Disorder,
interstitial lung disease, and Post Traumatic Stress
Disorder (PTSD).
LA physician with experience in WTC-related
diseases would have to make the determination that the
disease is related to exposure on or in the aftermath
of 9/11.
LThese eligibility guidelines ensure that all
who were exposed to the toxic cloud are able to receive
the medical treatment they require. Those eligible are
not just responders, but also community survivors who
lived, worked, or attend school in the affected area.
I would like to submit more than a dozen letters of support
from Members of Congress, elected officials, local community
organizations, businesses, labor, and others from New York City
and across the country that are asking the Senate to move
forward on this important bill. As we debate this bill, let us
think about the lives of these heroes--the thousands of
survivors living and working in the area and the tens of
thousands of responders that came from every single
congressional district in the country to serve our Nation.
Listen to the stories of Lt. Martin Fullam and Margrily Garcia,
who you will hear from today.
We must establish efficient programs to provide for their
care and treatment, and fulfill our moral obligation to these
heroes.
The horrific damage of 9/11 did not end when those
buildings came down. For thousands of Americans, the horror and
the pain began weeks, months and sometimes years later. We must
never forget the way these men and women have sacrificed for
our country.
Thank you and I look forward to answering any of your
questions about my legislation and hearing from the expert
witnesses today.
The Chairman. Well, Senator Gillibrand, thank you very
much, again, for your leadership on this issue, and for a very
impassioned statement, and for the legislation that you've
introduced. Like so many of us here, I know you have a lot on
your schedule today, too, that you have to do. And so, we thank
you for appearing here. Without further ado, we----
Senator Gillibrand. Thank you, Mr. Chairman. Thank you, Mr.
Ranking Member.
The Chairman [conitnuing]. Excuse you, and we'll get on to
our next panels.
Thank you very much, Senator.
Senator Gillibrand. Thank you.
The Chairman. Now we go to panel two. And that's Dr. John
Howard, director of the National Institute of Occupational
Safety and Health, and the coordinator of the World Trade
Center programs, board-certified in internal medicine and
occupational medicine.
You were just here, now that I think about that. So, you
must like it here.
Welcome back, Dr. Howard. And again, your statement will be
made a part of the record in its entirety. Please proceed.
STATEMENT OF JOHN HOWARD, M.D., DIRECTOR, NATIONAL INSTITUTE
FOR OCCUPATIONAL SAFETY AND HEALTH, CENTERS FOR DISEASE CONTROL
AND PREVENTION, DEPARTMENT OF HEALTH AND HUMAN SERVICES,
ATLANTA, GA
Dr. Howard. Thank you very much, Mr. Chairman, and Ranking
Member Enzi, and other distinguished members of the committee.
Thank you for inviting me here today. I'm pleased to say,
at the outset, that Secretary Sebelius and President Obama are
committed to ensuring that rescue and recovery workers,
residents, students, and others suffering from the health
consequences related to the World Trade Center disaster have
access to the monitoring and treatment that they need. In fact,
the President's 2011 budget more than doubles the funding for
care and monitoring of the 9/11 heroes.
First, let me tell you a little bit about the World Trade
Center Responder Health Program, which provides monitoring and
treatment services for responders who were involved in the
World Trade Center disaster. This program consists of a center
at the Fire Department of New York City, and at five medical
centers in the New York/New Jersey area, which provide these
services to responders. In addition, there are two data-
coordination centers, one at FDNY and one at Mount Sinai, which
provide patient data management. As of March 31, 2010, a total
of 48,613 responders are enrolled in the New York/New Jersey
metropolitan area program; 15,000 at FDNY; 32,000 at the other
five academic centers, combined.
CDC also supports the New York City Police Foundation's
Project Hope and the Police Organization Providing Peer
Assistance, or POPPA, which provides psychological health
services to World Trade Center police responders. The
cooperative agreements for the grantees in the New York/New
Jersey area will be extended to July 2011, next month.
Second, through the National Responder Contract, medical
monitoring and referral treatment services are provided to
about 4,000 responders who came to New York City from States
like Wyoming and Iowa and other States, and returned to their
home, and now live outside the New York/New Jersey metropolitan
area. CDC will announce a solicitation for a new national
responder contract soon, and expects to award that contract in
September.
Third, since 2008, when Congress appropriated funds to
provide screening and treatment for residents, students, and
others who were affected by the World Trade Center, CDC has
offered these services to eligible members of the community. As
of March 31 this year, about 4,500 individuals are enrolled in
the community program.
Finally, CDC funds the World Trade Center Health Registry,
operated by the New York City Department of Health and Mental
Hygiene, which follows a cohort of about 71,000 people who
performed 9/11-related rescue and recovery work, or who lived,
worked, and attended school in the vicinity of Lower Manhattan
on September 11, 2001.
This is the largest post-disaster health registry in U.S.
history. The registry goals are to identify the long-term
physical and mental health effects of the 9/11 disaster,
disseminate findings and recommendations to registrants, the
public, and the scientific community, share information about
9/11 resources and services, and inform health policy and
disaster response planning.
The registry has published several peer-reviewed scientific
articles, among--these are two that were published in 2007--one
finding that newly diagnosed asthma, after 9/11, occurred at a
rate that is 12 times the norm among adults in the United
States, and another that showed the overall prevalence of post-
traumatic stress disorder among responders enrolled in the
registry was four times the rate of the general U.S.
population.
By spotting these trends among registrants, the registry
can provide valuable guidance to alert those affected by the
World Trade Center disaster, and healthcare providers, of the
potential health effects that might be associated with their
exposures, and the need for early medical intervention.
Since 9/11, HHS and CDC has worked with our partners to
best serve those who served their country, as well as those in
nearby communities affected by the terrorist attacks. HHS and
CDC will continue to provide medical monitoring and treatment
services to responders, regardless of their location, as well
as to residents, students, and others most directly affected by
the World Trade Center attack.
Thank you, Mr. Chairman, and I'm happy to answer any
questions.
[The prepared statement of Dr. Howard follows:]
Prepared Statement of John Howard, M.D.
Good afternoon, Mr. Chairman, Ranking Member Enzi, and other
distinguished members of the committee. Thank you for inviting me to
testify today. I am Dr. John Howard, Director of the National Institute
for Occupational Safety and Health (NIOSH), which is part of the
Centers for Disease Control and Prevention (CDC) within the U.S.
Department of Health and Human Services (HHS). CDC's mission is to
promote health and quality of life by preventing and controlling
disease, injury and disability. NIOSH is a research institute within
CDC that is responsible for conducting research and making
recommendations to identify and prevent work-related illness and
injury.
Mr. Chairman, I would like to express my appreciation to you and to
the members of the committee for holding this hearing and for your
support of our efforts to assist those who are at risk or have
experienced adverse health outcomes from their
9/11 exposures. I am pleased to appear before you today to report on
the progress HHS has made in addressing the health needs of those who
served in the response effort after the World Trade Center (WTC) attack
on 9/11, and those in the affected communities and HHS efforts to
improve the existing program.
In September 2009, I began my second term serving as the HHS WTC
Programs Coordinator. Health and Human Services Secretary Kathleen
Sebelius and CDC Director Dr. Thomas Frieden emphasized the ``critical
need to ensure that programs addressing the health of WTC responders
and nearby residents are well-coordinated,'' and charged me with this
important task.
This Administration is committed to ensuring that rescue and
recovery workers, residents, students and others suffering the health
consequences related to the World Trade Center attack have access to
the monitoring and treatment they need. The President's 2011 Budget
will more than double the funding for the medical care and monitoring
of these 9/11 heroes.
Significant activities have been implemented and continue to evolve
through key partnerships with academic and clinical centers of
excellence in occupational and environmental health.
wtc responder health program--monitoring and treatment
Since 2002, agencies and offices within HHS have been dedicated to
tracking and screening WTC rescue, recovery and clean up workers and
volunteers (responders). HHS has allocated more than $1 billion for
recovery-related efforts since September 11, 2001.
In 2010, Congress appropriated $70.7 million to CDC to further
support existing HHS WTC programs and provide screening, monitoring and
medical treatment for responders and others in affected communities.
Since fiscal year 2002, Congress has provided approximately $475.8
million for WTC screening, monitoring, and treatment activities, and
grantees have spent approximately $263 million. Since these funds were
appropriated, NIOSH has established a coordinated WTC Responder Health
Program to provide periodic screenings, as well as diagnosis and
treatment for WTC-related conditions (e.g., aerodigestive,
musculoskeletal, and mental health) identified during monitoring exams.
Current spending rates indicate that there are sufficient resources to
provide health care treatment and monitoring for World Trade Center
responders and non-responders through fiscal year 2010. The fiscal year
2011 President's Budget requests $150 million for the WTC program.
Based on current spending rates, the fiscal year 2011 Budget request is
expected to provide sufficient funds to fully continue and manage the
WTC program.
The WTC Responder Health Program consists of a consortium of
clinical centers and data coordination centers that provide patient
tracking, standardized clinical and mental health screening, treatment,
and patient data management.
As of March 31, 2010, more than 52,667 responders from across the
country and 4,583 non-responders have met the eligibility criteria and
have enrolled in the WTC Health Programs. Most of the enrolled
responders reside within the greater New York City-New Jersey (NY/NJ)
Metropolitan area; however, 4,054 enrolled responders reside across the
United States, including Federal responders who were integrated into
the NIOSH program in fiscal year 2008. Of responders and non-
responders, 50,662 have received an initial health examination, and
responders are offered follow-up monitoring examinations annually. Over
the past year, 25,280 monitoring examinations were conducted, and
15,889 enrollees received treatment for WTC-
related health conditions.
The New York-New Jersey consortium--five clinical centers of
excellence--(non-FDNY Responders) provided data on its program as of
March 31, 2010. According to the data provided, these clinics have
conducted 27,682 initial examinations and 12,071 monitoring
examinations during the past year. During the same year, there were
7,578 patients in treatment.
According to data provided by the FDNY program, they have conducted
15,307 initial exams and 9,934 monitoring exams in the past year. FDNY
provided health care for 4,993 treatment patients.
In conjunction with these activities, CDC/NIOSH has funded the NYC
Police Foundation's Project COPE and the Police Organization Providing
Peer Assistance (POPPA) to continue providing mental health services to
the police responder population. The availability of treatment for both
physical and mental WTC-related health conditions has encouraged more
responders to enroll and continue participating in the WTC Responder
Health Program, which will enable us to better understand and treat the
long-term effects of their WTC exposures.
nationwide scope
Many rescue and recovery workers traveled from other States to New
York City to participate in the response efforts and following their
service, have returned to their States of residency. Initially, these
responders were offered monitoring exams through facilities that were
subcontracted by Mount Sinai Medical Center.
Responders referred for treatment from these monitoring exams were
referred to the philanthropically funded Association of Occupational
and Environmental Clinics (AOEC). AOEC was funded by the American Red
Cross to ensure the delivery of needed treatment services for the WTC
responders located outside the catchment area of the FDNY and NY/NJ
Consortium. As the philanthropic funds for treatment were expended,
monitoring and treatment services were combined into a national
services contract that included the Federal responders. An $11 million
contract was awarded to Logistics Health Incorporated (LHI) on May 31,
2008 to ensure that monitoring and treatment services would continue
without interruption. HHS is working to award a new responder contract
in early September and will continue to work with its partners to
ensure that the benefits of all federally funded programs are available
to eligible responders across the Nation by ensuring that responders do
not face an interruption of services and can easily transition between
funded programs. As of March 31, 2010, of the 4,054 responders residing
outside the NYC-NJ metropolitan area that have enrolled in the WTC
Responder Health Program, 2,067 had completed monitoring exams. These
responders, including current and former Federal employees, receive
monitoring and treatment services via a national network of clinics.
community program
From September 11, 2001 until 2008, HHS/CDC provided health care
services solely to WTC responders. However, in the Consolidated
Appropriations Act, 2008, Congress appropriated funding ``to provide
screening and treatment for first response emergency services
personnel, residents, students, and others related to the September 11,
2001, terrorist attacks on the World Trade Center.'' As of March 2010,
4,583 non-responders were enrolled in the program; 1,208 received
monitoring exams and 2,629 received treatment for WTC-related health
conditions.
wtc health registry
In addition to the WTC Responder Health Program, CDC/NIOSH
maintains the World Trade Center Health Registry (WTCHR). It is the
largest post-disaster exposure health registry in U.S. history and
follows a diverse cohort of 71,437 directly affected people who
performed 9/11-related rescue/recovery work or lived, worked or
attended school in the vicinity of Lower Manhattan on 9/11/01.
The goals of the WTC Health Registry are to identify the long-term
physical and mental health effects of the 9/11 WTC disaster;
disseminate findings and recommendations to enrollees and others
exposed, the public, and the scientific community; share information
about 9/11-related resources and services; and inform health care
policy and disaster response planning. Specific aims are to: (1) Expand
knowledge about the long-term health effects of 9/11 by continuing the
WTCHR research program; (2) Conduct community activities to respond to
the physical and mental health concerns and specific healthcare needs
of enrollees; and (3) Maintain the Registry as a valuable public health
resource for future research.
CDC and the Agency for Toxic Substances and Disease Registry
(ATSDR) have supported the WTCHR for 6 years, and over $20 million have
been invested to date. In addition, Registry data are used to identify
trends in physical or mental health resulting from the exposure of
nearby residents, school children and workers to WTC dust, smoke and
debris. Two journal articles published findings on 9/11-
related asthma and post-traumatic stress disorder (PTSD) among rescue
and recovery workers (Environmental Health Perspectives, 8/27/2007; and
American Journal of Psychiatry, 2007; 164:1385-94). Newly diagnosed
asthma after 9/11 was reported by 926 (3.6 percent) workers, a rate
that is 12 times the norm among adults. Similarly, the overall
prevalence of PTSD among rescue and recovery workers enrolled on the
WTC Health Registry was 12.4 percent, a rate four times that of the
general U.S. population. By spotting such trends among participants,
CDC/NIOSH can provide valuable guidance to alert Registry participants
and caregivers on the potential health effects that might be associated
with their exposures.
The WTC Health Registry also serves as a resource for future
investigations, including epidemiological, population specific, and
other research studies, concerning the health consequences of exposed
persons. These studies will permit us to develop and disseminate
important prevention and public policy information for use in the
unfortunate event of future disasters. The findings can assist those
working in disaster planning who are proposing monitoring and treatment
programs by focusing their attention on the adverse health effects of
airborne exposures and the short- and long-term needs of those who are
exposed.
conclusion
Since 9/11, HHS has worked diligently with our partners to best
serve those who served their country, as well as those in nearby
communities affected by the tragic attack. HHS will continue to provide
medical monitoring and treatment services to responders, regardless of
their location, as well as to residents, students and others most
directly affected by the WTC attack. This commitment is reflected in
the fiscal year 2011 Budget request of $150 million for the World Trade
Center Program, which is a doubling of the fiscal year 2010 levels.
Likewise, the WTC Health Registry continues to paint a picture of the
overall health consequences of 9/11, including the effects experienced
by the residents, school children and office workers located in the
vicinity of the WTC. HHS is also working to increase program
accountability and fiscal management in fiscal year 2011 through
improved data collection and analysis. Thank you for this opportunity
to update you on our progress. I am happy to answer any questions you
may have.
The Chairman. Dr. Howard, thank you very much.
As administrator of the World Trade Center programs for
many years, you've had intimate knowledge of what's been going
on. Again, just sum up, looking back--What would you say has
worked well? And what do we need to do now to make any
improvements?
Dr. Howard. Well, I think what's worked well is the
partnership that we have with local institutions in New York/
New Jersey that are closer to the population, understand the
population better, are best able to provide medical services.
The national program--I think we're fortunate in the
contractor that we have that's been able to reach out to a
network of health providers so that we don't lose any of these
providers that are now returned to their home States.
I think one of the areas that--speaking on behalf of the
grantees, stable funding is an important issue. These are
medical institutions that have many healthcare programs; and
obviously having some stable funding, as opposed to year-by-
year funding, is an issue--I think, that is one area that I
think could improve.
The Chairman. I don't want to detract from the importance
of this hearing, in terms of applying what we need to do for
the World Trade Center--the victims--but, I have had a number
of emails into my office, and actual phone calls, and others,
from people concerned about the workers in the Gulf, and
respiratory problems, and saying that we ought to be mandating
that people who work down there have to wear respirators. Yet,
every time I turn on the TV, I see people down there going
about in T-shirts with no respirators or anything like that.
And I don't know that much about this, but I'm just wondering,
What lessons did we learn from 9/11 that we should be applying
to the Gulf crisis?
Dr. Howard. Well, I think this is a very important
question. And, indeed, from the experience in the World Trade
Center response, I think there are three lessons that we
learned that we are applying in the Gulf oilspill. First of all
is, have a list of who the responders are, some basic
demographic information, some idea of what jobs they're being
assigned to.
One of the issues in the World Trade Center is that we've
had a continuing problem identifying those who were actually
involved in the response. So, having the roster of individuals
involved is something that we're doing now. And in the oilspill
response to date, we've rostered over 20,000 workers. In other
words, we know who they are, where they're working, and we can
find them at any particular time.
The second big issue is exposure monitoring--real-time
exposure monitoring. So, we now have a number of organizations,
including governmental organizations, as well as contractors--
OSHA and NIOSH being two of those governmental organizations,
EPA being another one--and a number of contractors that are out
looking at real-time exposure assessment--air monitoring, air
sampling, for instance. So, we're able to create a picture of
what the exposures are for individuals who are working now in
the oilspill. We didn't have some of that real-time exposure.
Then the third lesson that we learned is to be able to
actually collect health surveillance information on the
responders while they're working. So, we're preparing a symptom
survey that we're going to administer to response workers who
are currently working in the Gulf oilspill, to be able to
understand, What symptoms are they experiencing? We know about
folks who are seeking medical attention, who go to the medical
clinic or are transported to an emergency room. We know what
their issues are. But, we don't know the general worker
response issues with regard to, Are you feeling any symptoms?
So, those symptom surveys are going to be done during the
response. So, those are three lessons I think that we learned
from the World Trade Center.
The fourth lesson has to do with, Where do you go from
here, after the response is completed? So, having some
information about what the exposures were, having some
information about what the symptoms were during the response,
we can better manage, implement, a chronic health effect survey
and decide whether or not--What kind of study do we need to do
on these individuals over time to look for chronic health
effects?
So, I think the World Trade Center--one of the positives
from this terrible, terrible tragedy is that we've learned how
to manage the health effects of disasters better than we did
when we walked into the World Trade Center.
The Chairman. Well, that's very encouraging.
Thank you very much, Dr. Howard.
I'll turn to Senator Enzi.
Senator Enzi. Thank you, Mr. Chairman.
In your testimony, I think you mentioned that the New York
Fire Department conducted 15,307 initial exams, and then 9,900
monitoring exams, in the past year. That number is a little
confusing. Could you--since there are 16,000 firefighters,
wouldn't most of those have had some initial exams, even well
before the Trade Center?
Dr. Howard. Well, of course, I'll let Dr. Prezant speak
more directly to that. But, New York City firefighters, like
all firefighters, are subject to fitness-for-duty exams, which
are usually annually. So, those firefighters would have had
annual exams. In fact, one of the real positives with the
cohort of FDNY responders is that we have, if you will,
predisaster medical information. So, when we're able to--when
we're looking at a health effect after 9/11 in that cohort,
we're able to compare it better with a predisaster health
effect.
Senator Enzi. Thank you.
Healthcare payers generally require providers to furnish
detailed information about patients, their treatments, their
costs. There's a consensus that this type of information is
needed. It's the foundation of all the delivery system,
quality, and payment reforms. From the documentation that I
have from you, it looks like you require grantees to report how
much they spent, but not how they spent it. Why is that?
Dr. Howard. Yes, Senator, what you're seeing is exactly
what we require in the grant mechanism. And what we're doing
now, and have been doing for the last year and a half, is to
obtain more granular detail about fiscal management
categories--actually, service categories. We're asking the
grantees now to give us more granular data about the service
type that they're charging, to be able to get to, if you will,
what your question gets to, which is health-claims-level data.
This is not exactly that kind of vehicle--cooperative agreement
isn't that kind of vehicle. But, we're moving toward that.
We've implemented some of those requirements in the last
extension. We're implementing many more in the current
extension, which will start next month.
So, we, like you, are looking at some of those financial
status reports, where we're looking at how much funds are
obligated, how have they been spent. And we're seeing that we
don't have enough information to do sound fiscal management.
Senator Enzi. It's been quite a while. One argument for
authorizing those programs through the Help Committee was that
we could assure accountability and transparency. That way,
victims would know that they were getting the best care, and
taxpayers would know that the funds were being used effectively
to help victims. What procedures have you used to assure the
accountability and transparency over the 475 million you've
already received?
Dr. Howard. Senator, I think that's another excellent
question. And I would separate it into two phases.
In 2002 and 2003, I would say that we were in an emergency
provision phase, if you will. We received money from FEMA and
we weren't exactly sure what was going on with these responders
or community members, in terms of their health. And we quickly
got out the money, with very little strings attached to it.
As we then did the 5-year cooperative agreement, which
started in 2004--some of the FSRs that we provided to you are
based on that 5-year period of time--in those, toward the end
of that period of time, in 2007 and 2008, we began looking at
technical assistance visits to each of the grantees to try
figure out, ``Let's look at the books, and figure out whether
we can help you with fiscal management, and provide more
assistance.'' So, that phase, we began to actively implement
some of the issues that you've identified.
And now, as we get to 2008, 2009, and 2010, we have placed
that burden on the grantees, to do sounder fiscal management,
in terms of, basically, quasi-claims-level data.
Senator Enzi. It seems like a lot of people can fall
between the cracks, though, between one program and another
program.
The Congressional Budget Office expects most 9/11 victims
to continue to receive care from providers other than the
Centers of Excellence or the World Trade Center Health Program.
Do you know why patients are choosing to go to other providers?
Dr. Howard. I assume you're talking about responders
choosing to go to outside of the Federal-funded programs?
Senator Enzi. Yes.
Dr. Howard. I'm not 100 percent sure about that, Senator,
so I would have to get back to you on that.
Senator Enzi. OK. And another thing, since my time's
expired, I'll have you get back to me on how that NIOSH program
has recouped from, say, workers compensation, disability,
private health insurance, public entitlement, and the other
benefit delivery systems that----
Dr. Howard. Sure. And I'd be happy to answer that. If I
could have a minute, I'll get you the specifics on that.
Senator Enzi. I'll just send that to you in writing.
Dr. Howard. OK, great.
Senator Enzi. Don't answer it now. I've got several other
questions, too, but that will take care of it.
Go ahead.
The Chairman. Thank you, Senator Enzi.
Senator Merkley.
Statement of Senator Merkley
Senator Merkley. Thank you very much, Mr. Chair.
And thank you for your testimony.
First, I congratulate Senator Gillibrand for bringing this
bill forward to try to create a solid framework into the
future, to provide for both the healthcare needs of the
community and the responders.
One thing I want to have you comment on is--this is
separate from the settlement structure--but, my understanding
is, the settlement structure does not provide for the future
healthcare of those who are not currently sick and those who
have not filed a lawsuit. Could you comment on that?
Dr. Howard. I wish I could, but I'm not an expert on the
settlement. I've never read it. And so, I wouldn't be able to
do that. However, I certainly would be happy to try to get that
information to you.
Senator Merkley. OK. Well, I'll just note that that's my
understanding. And that's part of the reason that this bill is
necessary.
I was wondering if you could comment some on the difference
between the health effects of those who were near or in the
toxic cloud the first, say, 48 hours, and those who were
exposed over a longer period of time, later, and whether you
see significantly different patterns of health problems.
Dr. Howard. Well, again, I'm going to ask Dr. Prezant, who
is quite familiar with the cohort of FDNY responders, and has
published a number of different studies in that area.
You know, certainly in the overall cohort of responders, we
see probably at least three major areas where health effects
are persistent; first, in the psychological stress reactions
that Senator Harkin has referred to already--we see persistent
post-traumatic stress disorder.
The second category would be in respiratory effects, both
upper and lower respiratory effects. Some of them short-lived,
some of them are intermediate, and some of them have persisted
for many, many years. As Dr. Prezant reported, with a number of
other researchers recently, in April, the New England Journal
of Medicine, some of those effects have lasted 7 years since
the disaster.
And then, the third area is upper gastrointestinal, or
gastrointestinal esophageal reflux disease; we see quite a bit
of that.
Those are the major chronic health effects we're seeing in
the population.
Senator Merkley. Thank you.
Thank you, Mr. Chair.
The Chairman. Dr. Howard, thank you very, very much.
Time compels us to move on to our next panel.
Thank you very much for your leadership, and for being back
with us again today.
Now, we have our third panel. And this panel, I'll
introduce in order.
Dr. James Melius. He's the administrator of the New York
State Laborers' Health and Safety Trust Fund and chair of the
Steering Committee for the World Trade Center Medical
Monitoring and Steering Program. Dr. Melius is an occupational
health physician, an epidemiologist by training, and has years
of experience with occupational and environmental health
issues.
Next is Dr. Prezant. He is the chief medical officer for
the New York City Fire Department, and the codirector of the
New York Fire Department's World Trade Center Medical
Monitoring and Treatment Program. Dr. Prezant is also a
professor of medicine and pulmonary diseases at the Albert
Einstein College of Medicine, and the principal investigator
for the New York City Fire Department's Data Center, which
conducts analysis of the health effects of the World Trade
Center attacks on firefighters.
Then we have Lieutenant Marty Fullam. Lieutenant Fullam
devoted nearly 30 years of his life to the New York City Fire
Department. In the days and weeks following the September 11
terrorist attacks, he worked with his fellow firefighters, at
Ground Zero, to rescue survivors and restore order. In 2005,
doctors diagnosed Lieutenant Fullam with a rare autoimmune
disease called polymyositis and he underwent a lung transplant
last year. Lieutenant Fullam lives on Staten Island with his
wife Tricia and his three daughters.
Finally, we have Margrily ``Maggie'' Garcia. Ms. Margrily
Garcia, from the Bronx, New York City, was forced to evacuate
her office building near the World Trade Center on September
11. In the weeks following the attacks, she developed a
persistent cough and eventually sought out treatment at
Bellevue Hospital's World Trade Center Program.
Thank you for being with us today, Ms. Garcia. And we look
forward to also hearing your story.
So, from left to right, we'll start with Dr. Melius.
Again, all of your statements will be made a part of the
record in their entirety. And I'd ask you to sum up in 5
minutes or so, if you could; I'd appreciate it.
Dr. Melius.
STATEMENT OF JIM MELIUS, M.D., DrPh, ADMINISTRATOR, NEW YORK
STATE LABORERS' HEALTH AND SAFETY TRUST FUND AND CHAIR OF THE
STEERING COMMITTEE FOR THE WTC MEDICAL MONITORING AND STEERING
PROGRAM, ALBANY, NY
Dr. Melius. Thank you, Chairman Harkin, Ranking Member
Enzi, Senator Gillibrand. I greatly appreciate the opportunity
to appear before you today at the hearing. I will summarize my
written testimony today.
I've been involved with the World Trade Center health
issues since shortly after the attack occurred. As you
indicated, I've been closely involved with all the medical
programs that are currently in place for those workers, and
working with NIOSH on that.
The pulmonary disease and other health problems among
firefighters and other rescue, recovery workers, and community
residents are quite serious, and are affecting a large number
of people. In fact, I believe over 20,000 people have received
treatment through the federally funded treatment programs.
Others have received treatment elsewhere.
I believe that all of the Centers of Excellence, the
clinics involved, are doing an outstanding job of providing
high-quality medical care for the thousands of people that are
affected by these exposures. And I believe that these programs
have all been very effective in providing that care and keeping
people at work, helping them to get better, as best we can,
given the current status of our medical knowledge and care.
We also know that these medical problems are likely to
persist for years, and require chronic monitoring and
treatment. The toxic exposures that were experienced by people,
as you see in this picture, were complex. We really don't
understand what the long-term consequences will be. We
certainly can expect that there may be other diseases emerging
in the future. So, it's not only critical that we provide
medical care and treatment and monitoring, but we also track
these people over time to see what occurs and what we can learn
from that so that we can provide better treatment in the future
and prevent more people from becoming ill and disabled.
I believe that the current medical programs, and the way
this is set up through the medical Centers of Excellence,
provides the most effective and efficient approach to provide
these people with expert medical care by physicians experienced
in detecting and treating these conditions, and in a setting
where their long-term health can be tracked. This combination
of long-term health tracking and expert medical treatment, I
believe, is essential to provide the best long-term medical
care for these individuals, which I believe they all truly
deserve.
These medical programs also require Federal support. As I
testified in a previous hearing--I believe the subcommittee, 3
years ago--health insurance, and even health insurance under
the healthcare reform that's recently been passed, and workers
compensation programs, will not provide the comprehensive
reimbursement that will cover these conditions and provide the
support for this care.
We need a comprehensive solution. I believe that the bill,
Senate 1334, that Senator Gillibrand and others have
introduced, provides the framework for that treatment. It
includes a number of improvements. It institutionalizes a
number of important improvements in the program. It addresses
the issue that Senator Enzi raised for reimbursement through
more of a fee-for-service system so we can better track and
monitor treatment costs--a number of other changes that I've
listed in my testimony.
I also would add--the question I think Senator Merkley
inquired--the Victims Compensation Fund is also a very
important part of this legislation. The recent settlement that
was passed--and I've read the settlement, and I've seen the
press releases, discussions of it--this settlement does not
cover medical costs. It will not provide for--there's no
provision in it--in fact, they have stated that they will be
dependent on the federally funded program, or some similar
program, going forward, to provide medical care for all of
these people that are included in the settlement; simply deals
with economic losses, or future economic losses, for these
people. So, despite the settlement, and those other issues with
the settlement, we're going to continue to need this program.
We're approaching the ninth anniversary of this event.
We've known about the potential health consequences from these
exposures for most of those 9 years, seen the number of people
who've become ill, disabled, and dying from their World Trade
Center conditions continue to increase. Many of these people
are truly heroes for what they did. And all were initially
reassured by the Federal Government that the air was safe to
breath.
We should now do our duty to these rescue and recovery
workers and community residents whose health has been damaged
by the World Trade Center exposures, and pass legislation that
would provide long-term comprehensive medical and compensation
programs for these people. I urge you to do this as soon as
possible.
I thank you, and I'd be glad to answer questions.
[The prepared statement of Dr. Melius follows:]
Prepared Statement of James Melius, M.D., DrPH
Honorable Chairman Harkin, Ranking Member Enzi, and other members
of the Senate Health, Education, Labor, and Pensions Committee. I
greatly appreciate the opportunity to appear before you at this
hearing.
I am James Melius, an occupational health physician and
epidemiologist, who currently works as Administrator for the New York
State Laborers' Health and Safety Trust Fund, a labor-management
organization focusing on health and safety issues for union
construction laborers in New York State. During my career, I spent over
7 years working for the National Institute for Occupational Safety and
Health (NIOSH) where I directed groups conducting epidemiological and
medical studies. After that, I worked for 7 years for the New York
State Department of Health where, among other duties, I directed the
development of a network of occupational health clinics around the
State. I currently serve as chair of the Advisory Board on Radiation
and Worker Health which oversees part of the Federal compensation
program for former Department of Energy nuclear weapons production
workers.
I have been involved in health issues for World Trade Center
responders since shortly after September 11. Over 3,000 of our union
members were involved in response and clean-up activities at the site.
One of my staff spent nearly every day at the site for the first few
months helping to coordinate health and safety issues for our members
who were working there. When the initial concerns were raised about
potential health problems among responders at the site, I became
involved in ensuring that our members participated in the various
medical and mental health services that were being offered. For the
past 6 years, I have served as the chair of the Steering Committee for
the World Trade Center Medical Monitoring and Treatment Program. This
committee includes representatives of responder groups and the involved
medical centers (including the NYC Fire Department) who meet monthly to
oversee the program and to ensure that the program is providing the
necessary services to the many people in need of medical follow-up and
treatment. I also serve as co-chair of the Labor Advisory Committee for
the WTC Registry operated by the New York City Department of Health and
as a member of the Community Advisory Committee for the medical program
serving the community residents and workers affected by 9/11 exposures.
These activities provide me with a good overview of the benefits of the
current programs and the difficulties encountered by responders seeking
to address their medical problems and other needs.
I believe that Dr. Prezant will testify in more detail on the
medical problems experienced by the fire fighters and other responders.
The pulmonary disease and other health problems among fire fighters,
other rescue and recovery workers, and community residents are quite
serious and are afflicting a large number of people. All of the
federally funded medical programs have done an outstanding job in
providing high quality medical care for the many thousands of people
affected by these exposures. I believe that the expert medical care
being provided is helping many of these ill people continue to work and
be active which would not be the case if these programs did not exist.
These medical conditions are likely to persist for years and
require chronic monitoring and treatment. As the recent study of NYC
fire fighters demonstrates, the pulmonary capacity lost due to the WTC
exposures does not appear to recover. Post traumatic stress disorder,
another common condition in this population, is often very difficult to
treat and requires years of treatment for some individuals. We also
have to be vigilant for the emergence of new WTC-related conditions.
The WTC exposures were complex and unlike any that have been studied in
the past. It would not be unexpected for other WTC-related conditions
to become apparent as time goes by. The collection of medical data on
these populations allows us to track their health and identify new
health problems due to their 9/11 exposures at an early stage when
(hopefully) we will be able to avert more severe illness.
Given the need for long-term medical monitoring and treatment, the
current programs provide the most effective and efficient approach to
provide these people with expert medical care by physicians experienced
in detecting and treating these conditions and in a setting where their
long-term health can be tracked. The close link between the health
monitoring or tracking and medical treatment is essential to provide
the best long-term health care for these individuals.
These medical programs require Federal support. As I have testified
at a previous hearing of this committee, health insurance (including
Medicare) does not provide reimbursement for the treatment of work-
related injuries or illnesses. Workers' compensation systems are slow
and are not designed to handle complicated cases where people have
multiple health problems and whose medical needs and treatments may
constantly change over time. Despite attempts by New York State to
facilitate claims for people with WTC-related illnesses, these claims
still take years to get adjudicated and often not in a satisfactory
manner that would support the long-term health care needs of the
claimants. Community residents often face similar problems with their
health insurance, and many of them lack health insurance coverage at
present or are covered by policies with high co-pays and other costs
for them.
A comprehensive solution is needed to address the health needs of
the 9/11 rescue and recovery workers and community residents. We cannot
rely on a fragmented system utilizing private philanthropy, health
insurance, line of duty disability retirement, and workers'
compensation to support the necessary medical monitoring and treatment
for the thousands of people whose health may have been impacted by
their WTC exposures. This fragmented approach will inevitably leave
many of the ill and disabled rescue and recovery workers without needed
medical treatment and will only worsen their health conditions. The
delays and uncertainty about payments would discourage many of the ill
rescue and recovery workers from seeking necessary care and discourage
medical institutions from providing that care. We will also lose track
of these people and the ability to monitor their long-term health.
s. 1334
Senate bill 1334 the James Zadroga 9/11 Health and Compensation Act
of 2009 provides the comprehensive framework needed for the long-term
health monitoring and treatment for the workers and community residents
whose health has been affected by their WTC exposures. The legislation
builds on the current medical monitoring and treatment programs and
adds appropriate oversight to ensure that the program is properly
administered. These additions include:
Certification by NIOSH for all new people enrolling in the
program.
Certification by NIOSH for the diagnosis of a WTC-related
condition making that person eligible for treatment in the program.
Note that this diagnosis requires two steps--the finding that the
individual has the medical condition (on the list of WTC-related
conditions) and then that, in his or her case, that condition is
related to their WTC exposures.
Basing the medical care at Centers of Excellence to ensure
that physicians experienced in treating WTC-related health problems are
providing this care.
Reimbursement through a fee for service system that will
help to better track and monitor treatment costs.
Requirements for the development and use of approved
treatment protocols where appropriate by the medical care providers in
the program.
Implementation of quality assurance programs.
Implementation of a Federal program to detect fraud,
duplicate billing, and payments for inappropriate services.
Implementation of a method for adding new WTC-related
health conditions after scientific review.
Requirements for uniform data protocols within the
program.
Continuation of the national program to provide monitoring
and treatment for individuals living outside of the New York City
region.
These and other provisions in S. 1334 will help to maintain the
high quality of the program and ensure that the Federal support is
properly administered by the participating medical centers and
providers. It will also stabilize the funding for the institutions
providing the care.
victims compensation fund
The legislation would also reopen the victims compensation fund
(VCF) which will provide fair compensation for economic losses for
people whose health has been damaged by the WTC exposures. This is
especially important for the many individuals who are disabled and
unable to work and who are now unable to support their families. The
VCF as administered immediately after 9/11 had a limited time period
for application, and many people did not become ill until after they
were no longer eligible to apply.
Recently, another possible source of compensation was announced.
This is the proposed settlement of the lawsuits for health damages
filed against the city of New York and other parties involved in the
rescue, clean-up and recovery efforts. While we do not yet know the
full details of that settlement, it is clear that this settlement does
not provide a comprehensive solution. The lawsuits involve
approximately 10,000 to 11,000 individuals including at least a few
thousand without current health problems. We know that many more people
have been documented to be ill due to their 9/11 exposures. The Federal
medical programs have recognized over 20,000 people in treatment for
WTC-related health problems. Many of these would not be covered by this
settlement. Secondly, the settlement as announced does not include
provisions for ongoing health care. Thus, even for those people who
accept the settlement, there would be the need for current medical
programs.
conclusion
S. 1334 and the similar House bill H.R. 847 provide a sound and
effective approach for supporting the long-term health care needs of
the workers and residents whose health has been damaged by their
exposures in the aftermath of the WTC terrorist attack. Discontinuing
or disrupting this high quality, coordinated medical treatment would
only exacerbate the health consequences of the 9/11 disaster. Most of
the participants in the monitoring and treatment program have medical
conditions (asthma, mental health problems, etc.) that should be
responsive to medication and other treatments. They need expert medical
care by providers who are experienced in providing care for WTC
patients. Their health status needs to be tracked to detect illness in
those who are not yet sick and to monitor for possible new conditions
related to WTC exposures. The Centers of Excellence fulfill both of
these functions. Hopefully, many of these people will gradually recover
and not become disabled due to their WTC-related medical conditions. To
the extent, that we can prevent worsening of the medical conditions and
prevent many of these people from becoming too disabled to work, we can
not only help these individuals, but we can also lower the long-term
costs of providing care and assistance to this population.
The continued stable funding provided by this legislation will
ensure that these excellent medical programs will continue to provide
this badly needed care. Too often in the past, we have neglected to
properly monitor the health of groups exposed in extraordinary
situations only to later spend millions of dollars trying to determine
the extent to which their health has been impacted. Agent Orange
exposure in Vietnam and the current compensation program for nuclear
weapons workers (EEOICPA) are only two examples of this problem. We
should learn the lessons from these past mistakes and make sure that we
provide comprehensive medical monitoring for those potentially impacted
by the WTC disaster.
We are approaching the ninth anniversary of this terrible event. We
have known about the potential health consequences from these exposures
for most of those 9 years and have seen the number of people who have
become ill, disabled, and dying from their WTC conditions continue to
increase. Many of these people are truly heroes for what they did, and
all were initially reassured by the Federal Government that the air was
``safe'' to breath. We should now do our duty to these rescue and
recovery workers and community residents whose health has been damaged
by their WTC exposures and pass legislation that provides long-term
comprehensive medical and compensation programs for these people. I
urge you to do this as soon as possible.
Thank you. I would be glad to answer any questions.
The Chairman. Thank you very much, Dr. Melius.
Now, we'll turn to Dr. Prezant.
Dr. Prezant, welcome.
STATEMENT OF DAVID PREZANT, M.D., CHIEF MEDICAL OFFICER, FIRE
DEPARTMENT OF NEW YORK CITY, NEW YORK, NY
Dr. Prezant. Thank you. Good afternoon Chairman Harkin,
Ranking Member Enzi, members of the committee, and Senator
Gillibrand.
My name is David Prezant, and I'm the chief medical officer
for the New York City fire department.
The FDNY World Trade Center Medical Monitoring Treatment
and Data Analysis Programs are operated under a cooperative
agreement with NIOSH. And the Senate and the House have
generously provided funding so that FDNY could do this needed
monitoring and treatment, and analyze our results, develop
treatment protocols, and share this information with other
healthcare providers throughout this Nation, so that our
experience could be used to help their patients, as well as
ours.
Our patients have chronic World Trade Center-related
medical conditions that require long-term healthcare
commitments impossible to achieve when the funding is provided
year to year, and will run out on or about June 30, 2011.
Currently, our annual budget for monitoring, treatment, and
analysis is nearly $35 million. Without continued funding, we
will have to stop clinical services on or around late spring or
early summer of 2011. This has been a constant battle for us,
the end of each fiscal year.
Clearly, we need a long-term solution, and we hope to
receive a commitment from the Senate, the House, and the
President that matches the commitment FDNY firefighters and EMS
workers and many others made on 9/11, the day our Nation was
attacked, 2,751 innocent victims were killed, the day 343 FDNY
first responders made the ultimate sacrifice. That day began a
10-month-long rescue/recovery effort during which nearly every
FDNY member was exposed to World Trade Center dust and
chemicals, risking their life and health.
Every FDNY firefighter and EMS rescue worker in our program
suffered intense exposure, with health effects that could be
objectively quantified because our program had the foresight to
collect pre-9/11 health data, including breathing tests, on
each and every one of them. Nearly 16,000 FDNY rescue workers
took part on the rescue and recovery efforts--roughly 11,500
firefighter and fire officers; nearly 3,000 EMTs and
paramedics; and nearly 1,000 FDNY pre-9/11 retirees that came
in to help us.
Arrival time at the World Trade Center site, the initial
day of arrival, has been the best predictor of health outcomes
in both our cohort and the other cohorts. Nearly 2,000 of the
16,000 workforce, 15 percent, arrived during the morning of 9/
11, during the collapse or immediately thereafter; 54 percent
arrived during the remainder of that day; 14 percent on day 2;
15 percent during the days 3 through 14; and the rest
thereafter. Most spent an average of 4 months working at Ground
Zero.
Everyone received a pre-9/11 health exam. But, as of March
31, 2010, 15,307 of the 16,000 have received a first post-9/11
FDNY monitoring exam for an amazing 96-percent compliance
rate--unheard of in any medical monitoring program. You asked,
Why not 100 percent? Well, 343 could not receive a post-9/11
exam, because they were killed that day in the attack on our
Nation.
Annually, we provide over 10,000 monitoring exams. And
overall, since October 1, 2001, we have provided over 73,000
monitoring exams. Retention rates have been excellent, and
define this program as the most successful labor management
healthcare initiative in our history.
Ninety-four percent have received a second World Trade
Center monitoring exam. Eighty-six percent have received a
third exam. We just started a fourth exam, and already 74
percent have received that exam. And each year, these rates
improve. And we are already starting, shortly, a fifth and
sixth exam.
Disease surveillance is a critical part of this program. We
don't just do monitoring. We look at the data, and we try to
provide the best healthcare possible, based on what is--our
findings show.
In the first year post-9/11, the average annual decline in
pulmonary function for symptomatic and asymptomatic exposed
FDNY rescue workers was 372 milliliters. That is 12 times
greater than the annual decline in pulmonary function that we
saw in each of the years before 9/11. Normally, our workers
drop about 27 milliliters per year.
And in those who were most affected--most symptomatic, the
decrease in pulmonary function was 600 milliliters, or 10
percent. Why was this decrease occurring? Because of asthma,
reactive airways disease, chronic bronchitis. We've documented,
in the New England Journal of Medicine, just recently, in April
2010, that over the next 6 years, pulmonary function did not
return to normal. This drop was persistent and has not
improved, despite time and treatment.
More than 30 percent of the members who participated in
World Trade Center medical monitoring exams have upper and
lower respiratory disease. We've shown an increase in other
diseases, not just asthma, but sarcoidosis, which affects an
increasing number of our workers; pulmonary fibrosis, luckily
only in a few of our workers. And we are closely monitoring for
other diseases, such as cancer.
Seventy-six percent of our workers have reported
psychological problems--12 percent with PTSD, post-traumatic
stress disorder; 20 percent with chronic depression.
Overall, we have treated nearly 9,000 members for chronic
respiratory or mental health issues. And nearly all of our
patients have benefited from this treatment. But, despite this
treatment, 1,300 FDNY rescue workers have had to file for
respiratory disability--objective disability benefits, not
based on symptoms, but based on clear declines in pulmonary
function.
These healthcare findings, they really don't speak to the
heart of the matter, to what our patients are suffering on a
daily basis. And if I could just have 1 more minute, I'd go
over that with you briefly.
On 9/11, when the Twin Towers were burning, FDNY
firefighters ran into those buildings. By the time the second
plane hit, most realized that this was not going to be just a
fire; this was an attack. And yet, they continued to run in. I
have a patient who told a younger firefighter, ``You go left,
I'll go right.'' That younger firefighter died. And that older
firefighter, because of that decision, feels he was responsible
for that firefighter's death. He woke up every night screaming
for the first 6 months. And now he wakes up screaming less, but
still so often that his wife sleeps in a separate room. That's
not the way things should be.
We have firefighters who have suffered severe trauma. One
firefighter was rescued by a unit that went in specifically
because they heard his distress on a radio signal. They found
him lying in a pit. His skull was hanging off of his head. They
put the top of his skull back on his head like a helmet, they
picked him up and carried him out of there. He was the sickest
firefighter during the first weeks after 9/11; intubated, dying
several times, being brought back to life. Because of our
treatment program, he is alive today. He still has symptoms, he
still has some problems with asthma and PTSD and vertigo from
his head trauma, but he is alive today. And he's watched his
two children grow. And that's because of our treatment program.
Then, we have firefighters--a few, thankfully--who have
suffered pulmonary fibrosis and the only treatment for
pulmonary fibrosis is lung transplantation. Without new lungs,
they would be dead. We're lucky today that two of those
firefighters have survived. One of them is here today,
Lieutenant Martin Fullam, who will share with you his story in
just a moment.
In summary, this program needs to continue for all the
patients I've talked about today, for every FDNY rescue worker,
for all the others exposed to the World Trade Center. This
legislation will provide, hopefully, long-term funding so that
they can receive health benefits.
Most importantly, I'm proud to say that this legislation
will allow FDNY, New York City, and all of America to fulfill
the commitment we made to each of those heroes on 9/11, to help
those lucky enough to survive, and to help those who helped us
survive.
Thank you.
[The prepared statement of Dr. Prezant follows:]
Prepared Statement of David Prezant, M.D.
Good morning Chairman Harkin, Ranking Member Enzi and members of
the committee. My name is Dr. David Prezant, and I am the chief medical
officer, Office of Medical Affairs, for the New York City Fire
Department (FDNY). I am also a Professor of Medicine in Pulmonary
Diseases at the Albert Einstein College of Medicine. Along with Dr.
Kerry Kelly, who could not be here today, I am the co-director of the
FDNY World Trade Center (WTC) Medical Monitoring and Treatment Program.
I am delighted to be here today to support this legislation, which will
provide needed long-term funding for the monitoring and treatment of
WTC-exposed responders and specifically for FDNY first responders. Many
of these responders, unfortunately, have become patients with critical
health needs related to physical, respiratory and mental health
illness.
I would first like to thank this committee and the members of the
Senate and the House of Representatives who have shown their
extraordinary support for our patients and our program, especially
those from the New York delegation--Senators Gillibrand and Schumer and
our New York members of the House of Representatives.
The FDNY WTC Medical Monitoring, Treatment and Data Analysis
Programs are operated under a cooperative agreement with the National
Institute of Occupational Safety and Health (NIOSH). This funding that
the Senate and House have generously provided has helped the FDNY to
provide needed monitoring and treatment, an ability to analyze our
results, develop treatment protocols and share this information with
other healthcare providers so that our experience could be used to help
other patients with similar WTC-related problems. These patients have
chronic WTC-related medical conditions that require long-term
healthcare commitments--impossible to achieve when the funding is
provided year to year and will run out on or before June 30, 2011.
Currently our annual budget for monitoring, treatment (physical and
mental health) and our data center is nearly $35 million. Without
continued funding, we will have to stop clinical services in late
spring to early summer of 2011. Clearly, we need a long-term solution--
a commitment from the Senate, the House and the President that matches
the commitment FDNY firefighters and EMS workers made on 9/11, the day
our Nation was attacked and 2,751 innocent victims were killed--the day
343 FDNY first responders made the ultimate sacrifice. That day began a
10-month long rescue/recovery effort during which nearly every FDNY
member was exposed to WTC dust and chemicals, risking their life and
health.
I am often asked, how many have been exposed, how many are in the
monitoring and treatment program and will there be funding left to
allow this program to continue? The FDNY-WTC Center of Excellence, its
clinical and data center components, is uniquely capable of providing
this information because, as a group, our exposure was the most intense
and our group is the only one with pre-9/11 baseline health data. So,
the effects of WTC exposure on the health of our members can be
objectively measured. The following data will help to answer these
questions and allow you to better understand the FDNY's WTC-related
healthcare needs.
Nearly 16,000 FDNY rescue workers took part in the WTC
rescue, recovery and fire suppression efforts--roughly 11,500
firefighters and fire officers, 3,000 EMTs and paramedics and 1,000
FDNY retirees. So far, arrival time at the WTC site has been the best
predictor of health outcomes. Nearly 2,000 members--or 15 percent of
our workforce--arrived in the morning on 9/11, 54 percent arrived
during the remainder of that day, 14 percent on day two, 15 percent
during days 3 through 14, and the rest thereafter. Duration, total time
spent at the site, has also been an important predictor of health
outcomes, but not as important in our group, probably because of their
extensive exposures during the first week.
As of March 31, 2010, 15,307 FDNY WTC-exposed rescue/
recovery workers (active and retired fire and EMS personnel) have
received at least one FDNY WTC monitoring exam for a 96 percent
compliance rate.
Retention rates in our program remain extremely high. In
the past 12 months (6/1/09 to 5/30/10), we provided 9,922 monitoring
exams to active and retired WTC-exposed FDNY firefighters, EMS
personnel and officers. By the end of the year, we will again achieve
over 10,000 monitoring exams and overall since 10/1/01, FDNY has
provided over 73,000 WTC monitoring medical exams. As of 5/31/10,
retention rates have been excellent:
94 percent have received a second WTC monitoring
exam.
86 percent have received a third exam.
74 percent have received a fourth exam.
Each year the above rates improve and already many
have received fifth and sixth exams.
Disease surveillance is a critical part of our program. In
the first year post-
9/11, the average annual decline in pulmonary function, for symptomatic
and asymptomatic FDNY-WTC responders, was 372 ml, or 12 times greater
than the average annual decline noted 5 years before 9/11. And in those
most affected, the decrease in pulmonary function was over 600 ml or 10
percent of their lung capacity. Further testing has indicated that the
predominant problem is obstructive airways diseases such as airway
hyperactivity, asthma, Reactive Airway Dysfunction Syndrome (RADS) and
chronic bronchitis. In April 2010, we reported in the New England
Journal of Medicine (see appendix and attachment) that over the first 7
years post-9/11 (9/11/01 to 9/10/08), for the majority of our members,
the drop in pulmonary function identified in year 1 has persisted with
no significant improvement. Time and treatment has only prevented
further decreases. More than 30 percent of the members who participated
in follow-up WTC medical monitoring exams continue to report upper and/
or lower respiratory symptoms.
Sarcoidosis is an auto-immune disease that can affect any
organ but primarily affects the lungs. In the first year after 9/11,
FDNY identified 13 Sarcoidosis cases, as compared to an annual rate of
only two to three cases per year in the 15 years before 9/11. While the
numbers have leveled off--we now see about four cases a year--these
Sarcoidosis cases continue to have more serious clinical presentation
than we saw prior to 9/11. Before 9/11, they were nearly always
asymptomatic. Now the majority of the Sarcoidosis cases we see have
objective evidence of airway obstruction and a few have disabling
systemic inflammation involving joints, bones, muscles and other
organs.
Unrelated to Sarcoidosis, we have also seen several cases
of pulmonary fibrosis, one of which has been fatal, and two of our
patients have received lung transplants--both are doing well. As this
is nearly always a fatal disease, with lung transplantation the only
available option, we are fortunate that very few have come down with
fibrotic lung disease. However, in the 15 years prior to 9/11/01, FDNY
saw no such cases.
In a mental health study, 76 percent of our FDNY-WTC
firefighters reported at least one psychological symptom post-WTC. The
most frequent symptoms reported are insomnia, irritability and anxiety,
and 12 percent met criteria for Post Traumatic Stress Disorder (PTSD).
PTSD rates remain elevated and we are now seeing more cases of chronic
depression.
Since 9/11, the FDNY WTC Medical Monitoring Program has
provided treatment for WTC-related physical health (majority being
asthma, rhinosinusitis, GERD) and mental health (majority being PTSD,
depression, prolonged grief and anxiety) conditions to over 9,000
members. In the past 12 months (6/1/09 to 5/30/10), our program
provided WTC-related physical health and mental health treatment to
4,241 and 1,770 members, respectively. This year, we are on track to
equal those numbers.
Nearly all of the patients in our treatment program report
improvement in symptoms. Many have been able to return to work but
others have had to retire with documented disability based on serious
reductions in lung function. Between 2002 and 2010, over 1,300 FDNY
firefighters have qualified for disability benefits, primarily due to
lung disease but with some due to other WTC-related conditions (mental
health, chronic rhinosinusitis, etc.). Annually, we have been averaging
150 cases per year, as compared to 49 cases in the 3 years before 9/11.
In addition to publishing nearly 40 peer-reviewed medical
articles on WTC medical conditions (see appendix), the FDNY distributed
a summary data publication to every FDNY-WTC member, a copy is
available online (see appendix) and also coauthored with the NYC
Department of Health and the other Centers of Excellence clinical
guidelines for the treatment of respiratory and mental health
conditions related to World Trade Center Exposure that is also
available online (see appendix).
These numbers only begin to express the real healthcare needs of
our exposed members and patients. They provide the basis for
understanding the extent of this disaster and our future funding needs,
but they do not speak to the heart of the matter--to the special
commitment that was made on 9/11 between those in need of help and
those who could provide the help.
On 9/11, when the Twin Towers were burning, FDNY firefighters ran
into those buildings. By the time the second plane hit, most realized
that this was not just a fire, but a terrorist attack; our members were
the first to enter this urban war zone. In a tower that morning, one
senior firefighter told a young firefighter to search the right hallway
while he searched the left. At the time he could not have realized that
he would come home and the younger man would not. But, because he is my
patient, I can tell you that there are still nights when he wakes up
screaming in a cold sweat reliving that decision. Thankfully, this
happens less often than before we started treatment, but still too
often to claim a medical victory.
One fire officer was buried in the first collapse and was rescued
by a group of firefighters who, without a second thought, ran in to
pull him out. Many of the members of that unit are my patients today.
They have asthma and sinusitis that prevents them from being
firefighters or from living anything that resembles the life they once
took for granted. But, like every patient I have, they all shared a
common commitment that remains unshaken, no matter how ill they are or
might become. They would not have done anything different that day. In
fact, they would all do it again and only wish they could have done
more. They were the lucky ones because that morning their efforts were
rewarded. They found that fire officer with the top part of his skull
hanging off to the side and barely breathing. One of those firefighters
told me that ``we had no choice but to push it back on as if it was his
helmet, pick his heavy ass up and run for our lives.'' He got to the
hospital alive, but was suffering severe head trauma, and airway and
lung injuries. The next few days were tough ones for him and his
family. He was saved many times over. I spoke to his wife and tried to
explain to her how critical his condition was and what decisions she
needed to make. She looked up at me and said I can't think straight, I
am counting on you and the others here to make those decisions.
Thankfully, he eventually recovered. He continues to have a daily
cough, vertigo, headaches and a host of other problems. But, the
treatment that this program provides him has gotten him back on his
feet and he remains hopeful that the monitoring and treatment that we
have promised him will continue. He also remains angry that each year
he is told that Federal funding may not be renewed and if so our
program and the other WTC programs will have to severely curtail their
programs, eventually even close their programs and that his medical
needs may be ignored. All he wants is to remain well enough to see his
children and grandchildren grow and prosper in a safer world because of
the sacrifice he and others made that morning on 9/11.
Others were not so lucky. They could not be rescued. But, it was
not for lack of effort or commitment. Nearly every FDNY member suffered
significant and repeated exposures and they were not alone in these
efforts. Members of the Police and Sanitation Departments, and
construction and communication workers, and others helped in every way
possible. A perfect example are the two firefighters who required lung
transplants after working at Ground Zero, trying in whatever way they
could to find someone. Without new lungs, they would in all likelihood
have had less than a year to live. I have seen both of these men
struggle with their illness over the years since 9/11, learning how to
breathe with limited reserve and on constant oxygen. Despite knowing
that death was around the corner, they remained outwardly unemotional
and completely stoic about their fate. That is until the day each was
notified that donors had been found. Joy, fear, tears mixed with a
grateful understanding that none of this would have been possible
without the FDNY WTC Treatment Program. Both are now doing well with
substantial improvements in their quality of life--in fact, one no
longer requires supplemental oxygen.
This program needs to continue for all of the patients I have
talked about today, for every FDNY WTC rescue/recovery worker and for
all the others who were exposed at the World Trade Center site. This
legislation will provide long-term funding so that the FDNY and the
other Centers of Excellence can continue monitoring and treatment
programs for our exposed workforce (both active and retired
firefighters and EMS workers), and use lessons learned to inform lesser
exposed groups (and their healthcare providers) of the illnesses seen
and the treatments that are most effective. Most importantly, I am
proud to say that this legislation will allow the FDNY, New York City
and all of America to fulfill the commitment we made to each of these
heroes on 9/11--to help those lucky enough to survive and to help those
who helped us survive.
Thank you for your past efforts, and your continued support of our
members, patients and Department and I urge you to support S. 1334.
Appendix--FDNY WTC Publications
1. Prezant DJ, Weiden M, Banauch GI, McGuinness G, Rom WN, Aldrich
TK and Kelly KJ. Cough and bronchial responsiveness in firefighters at
the World Trade Center site. N Eng J Med 2002;347:806-15.
2. Banauch GI, McLaughlin M, Hirschhorn R, Corrigan M, Kelly KJ,
Prezant DJ. Injuries and illnesses among New York City Fire Department
rescue workers after responding to the World Trade Center Attacks. MMWR
2002;51:1-5.
3. Prezant DJ, Kelly KJ, Jackson B, Peterson D, Feldman D, Baron S,
Mueller CA, Bernard B, Lushniak B, Smith L, BerryAnn R, Hoffman B. Use
of respiratory protection among responders at the World Trade Center
Site--New York City, September 2001. MMWR 2002;51:6-8.
4. Rom WN, Weiden M, Garcia R, Ting AY, Vathesatogkit P, Tse DB,
McGuinness G, Roggli V, Prezant DJ. Acute eosinophilic pneumonia in a
New York City firefighter exposed to world trade center dust. Am. J.
Resp. Crit. Care Med. 2002;166:797-800.
5. Banauch GI, Alleyne D, Sanchez R, Olender K, Weiden M, Kelly KJ,
and Prezant DJ. Persistent bronchial hyperreactivity in New York City
firefighters and rescue workers following collapse of World Trade
Center. Am. J. Resp. Crit. Care Med. 2003; 168:54-62.
6. Edelman P, Osterloh J, Pirkle J, Grainger J, Jones R, Blount B,
Calafat A, Turner W, Caudill S, Feldman DM, Baron S, Bernard BP,
Lushniak BD, Kelly KJ, Prezant DJ. Biomonitoring of chemical exposure
among New York City firefighters responding to the World Trade Center
fire and collapse. Environ Health Perspect, 2003; 111:1906-11.
7. Feldman DM, Baron S, Mueller CA, Bernard BP, Lushniak BD, Kelly
KJ, Prezant DJ. Initial symptoms, respiratory function and respirator
use in New York City firefighters responding to the World Trade Center
(WTC) disaster. Chest 2004;125:1256-64.
8. Fireman E, Lerman Y, Ganor E, Greif J, Fireman-Shoresh, S,
Oppenheim E, Flash R, Miller A, Banauch GI, Weiden M, Kelly KJ, Prezant
DJ. Induced sputum assessment in NYC firefighters exposed to World
Trade Center dust. Environ Health Perspect, 2004; 112:1564-69.
9. Banauch GI, Dhala A, Alleyne D, Alva R, Santhyadka G, Krasko A,
Weiden M, Kelly KJ, Prezant DJ. Bronchial hyperreactivity and other
inhalation lung injuries in rescue/recovery workers after the World
Trade Center collapse. Crit Care Med. 2005;33:S102-S106.
10. Banauch GI, Dhala A, Prezant DJ. Airway dysfunction in rescue
workers at the World Trade Center site. Curr Opin Pulm Med 2005;
11:160-8.
11. Bars MP, Banauch GI, Appel DW, Andreaci M, Mouren P, Kelly KJ,
Prezant DJ. ``Tobacco Free with FDNY''--The New York City Fire
Department World Trade Center Tobacco Cessation Study. Chest 2006;
129:979-987.
12. Banauch GI, Hall C, Weiden M, Cohen HW, Aldrich TK,
Christodoulou V, Arcentales N, Kelly KJ, and Prezant DJ. Pulmonary
function loss after World Trade Center exposure in the New York City
Fire Department. Am. J. Respir. Crit. Care Med. 2006; 174:312-19.
13. Friedman S, Cone J, Eros-Sarnyai M, Prezant D, Szeinuk J, Clark
N, Milek D, Levin S, Gillio R. Clinical guidelines for adults exposed
to World Trade Center Disaster (Respiratory and Mental Health). City
Health Information, NYC Department of Health and Mental Hygiene.
September 2006. http://www.nyc.gov/html/doh/downloads/pdf/ehi/chi25-
7.pdf; updated in June 2008 available http://www.nyc.gov/html/doh/
downloads/pdf/chi/chi27-6.pdf.
14. Lioy PJ, Pellizzari E, and Prezant DJ. Understanding and
learning from the WTC Aftermath and its affect on health through Human
Exposure Science. Environ. Science Technology. November 15, 2006; 6876-
85.
15. Izbicki G, Chavko R, Banauch GI, Weiden M, Berger K, Kelly KJ,
Hall C, Aldrich TK and Prezant DJ. World Trade Center Sarcoid-like
Granulomatous Pulmonary Disease in New York City Fire Department Rescue
Workers. Chest, 2007;131:1414-23.
16. Weiden M, Banauch G, Kelly KJ, and Prezant DJ. Firefighters
Health and Health Effects of the World Trade Center Collapse. In:
Environmental and Occupational Medicine. Pg 477-90. 4th Ed. Edited by
Rom WN and Markowitz S. Lippincott-Raven Inc. Philadelphia, 2007.
17. Kelly KJ, Niles J, McLaughlin MT, Carrol S, Corrigan M, Al-
Othman F, and Prezant DJ. World Trade Center health Impacts on FDNY
Rescue Workers--a 6-year assessment, September 2001 to 2007. Fire
Department of the city of New York, October 2007. http://www.nyc.gov/
html/om/pdf/2007/wtc_health_impacts_on_
fdny_rescue_workers sept_2007.pdf.
18. Banauch GI, Izbicki G, Chavko R, Christodoulou V, Weiden MD,
Webber MP, Cohen HW, Gustave J, Aldrich TK, Kelly KJ, and Prezant DJ.
Trial of Prophylactic Inhaled Steroids to Prevent or Reduce Pulmonary
Function Decline, Pulmonary Symptoms and Airway Hyperreactivity in
Firefighters at the World Trade Center Site. Disaster Medicine and
Public Health Preparedness. 2008; 2:33-9.
19. Prezant DJ. World Trade Center Cough Syndrome and its
Treatment. Lung. 2008; 186:94S-102S.
20. Prezant DJ, Levin S, Kelly KJ, Aldrich TK. Upper and Lower
Respiratory Diseases after Occupational & Environmental Disasters. Mt.
Sinai Medical Journal. 2008; 75:89-100.
21. Prezant DJ, Levin S, Kelly KJ, Aldrich TK. 9/11 World Trade
Center Related Pulmonary and Airway Complications In: Interstitial
Pulmonary and Bronchiolar Disorders, Edited by Lynch J. Lung Biology in
Health and Disease Vol 227 Ex Editor Lenfant C. Informa Healthcare USA
Inc., New York, 2008.
22. Corrigan M, McWilliams R, Kelly KJ, Niles J, Cammarata C, Jones
K, Glass L, Wartenberg D, Halliman W, Kipien H, Schorr J, Feirstein I,
and Prezant DJ. A computerized self-administered questionnaire to
evaluate post-traumatic stress in firefighters after the World Trade
Center collapse. Am. J. Public Health. 2009; 99 Suppl 3:S702-9.
23. Webber M, Jackson G, Lee R, Zieg-Owens R, Niles J, Kelly K, and
Prezant DJ. Trends in Respiratory Symptoms of Firefighters Exposed to
the World Trade Center Disaster: 2001-2005. Environ. Health
Perspectives 2009; 117:975 09980. Epub 2009 Feb 11.
24. Chiu S, Webber MP, Zeig-Owens R, Gustave J, Lee R, Kelly KJ,
Rizzotto L, Prezant DJ. Validation of the Center for Epidemiologic
Studies Depression Scale in Screening for Major Depressive Disorder
Among Retired Firefighters Exposed to the World Trade Center Disaster.
J Affective Disorders. 2010;121:212-19. Epub 2009 June 18.
25. Weiden MD, Ferrier N, Nolan A, Rom WN, Comfort A, Gustave J,
Zheng S, Goldring RM, Berger KI, Cosenza K, Lee R, Zeig-Owens R, Webber
MP, Kelly KJ, Aldrich TK, Prezant DJ. Obstructive Airways Disease with
Air-trapping among Firefighters Exposed to World Trade Center Dust.
CHEST 2010;137:566-74. Epub 2009 Oct 9.
26. Aldrich TK, Gustave J, Hall CB, Cohen HW, Webber MP, Zeig-Owens
R, Cosenza K, Glass L, Christodoulou V, Al-Othman F, Weiden MD, Kelly
KJ, Prezant DJ. Long-Term Follow Up of Lung Function In FDNY
Firefighters and EMS Workers Exposed To World Trade Center Dust. New
England J Medicine. 2010;362:
1263-72.
27. Rom WN, Reibman J, Rogers L, Weiden MD, Oppenheimer B, Berger
K, Goldring R, Harrison D, Prezant D. Proc. Am Thorac Soc. 2010;7:142-
45.
28. Chiu S, Webber MP, Zeig-Owens R, Niles J, Gustave J, Lee R,
Kelly KJ, Rizzotto L, McWilliams R, Schorr JK, North C, Prezant DJ.
Performance Characteristics of the Posttraumatic Stress Disorder
Checklist in Retired Firefighters Exposed to the World Trade Center
Disaster. Annals of Clinical Psychiatry (In Press).
29. Benninger A, Webber MP, Gustave J, Lee R, Cohen 1 091W, Kelly
KJ, Prezant DJ. Trends In Elevated PTSD Risk In Firefighters Exposed To
The World Trade Center Disaster: 2001-5. Public Health Reports (In
Press).
30. Webber MP, Lee R, Soon J, Kelly KJ, Prezant DJ. Risk of
Obstructive Sleep Apnea In World Trade Center Exposed Fire Department
Rescue/Recovery Workers. Journal of Sleep and Breathing (In Press).
31. Banauch GI, Brantly M, Izbicki G, Hall C, Shanske A, Chavko R,
Santhyadka G, Christodoulou V, Weiden MD, Prezant DJ. Accelerated
Spirometric Decline in Alpha 1 Antitrypsin Deficient NYC Firefighters
after World Trade Center Exposure. CHEST (In Press).
32. Benninger A, Webber MP, Gustave J, Lee R, Cohen HW, Kelly KJ,
Prezant DJ. Longitudinal Study Of Elevated PTSD Risk In Firefighters
Exposed To The World Trade Center Disaster: Onset And Course Over Time.
Am. J Industrial Med (Submitted 10/2009).
33. Berninger A, Webber MP, Gustave J, Lee R, Cohen HW, Kelly KJ,
Prezant DJ. Quality of Life in Relation to Upper and Lower Respiratory
Symptoms and Treatment among Retired 9/11 Firefighters. Quality of Life
Journal (Submitted 10/2009).
34. Chiu S, Webber MP, Niles J, Zeig-Owens R, Gustave J, Lee R,
Kelly KJ, Cohen HW, Prezant DJ. Post-Traumatic Depression And Post-
Traumatic Stress Disorder Co-Morbidity: Evaluating Risk Factors And
Possible Mediation Properties. J of Epidemiology (Submitted 01/2010).
35. Niles JK, Webber MP, Gustave J, Cohen HW, Zeig-Owens R, Kelly
KJ, Glass L, Prezant DJ. Co-Morbid Trends in World Trade Center Cough
Syndrome and PTSD in Firefighters: 2001-5. CHEST (Submitted 6/2010).
36. Soo J, Webber MP, Gustave J, Lee R, Hall CB, Cohen HW, Kelly
KJ, Prezant DJ. Trends of Probable PTSD in Firefighters Exposed to the
World Trade Center Disaster 2001-9. Epidemiology (Submitted 6/2010).
37. Weakley J. Webber M, Jackson G, Lee R, Kelly KJ, and Prezant
DJ. Trends in Respiratory Symptoms and Diagnoses of Firefighters
Exposed to the World Trade Center Disaster: 2001-9. Environ. Health
Perspectives (Submitted 6/2010).
The Chairman. Thank you very much, Dr. Prezant.
Now we turn to one of those heroes, and one of those
victims.
Lieutenant Fullam, again, we sit here in awe of you, and
what you and your fellow firefighters did on that day and the
weeks and months afterward. I know you've had a rough time of
it, health-
wise. So, we really appreciate your extraordinary efforts, both
then and now, to come to this hearing. Thank you.
STATEMENT OF MARTIN FULLAM, FIREFIGHTER, FIRE DEPARTMENT OF NEW
YORK CITY, NEW YORK, NY
Mr. Fullam. Thank you very much, Senator.
The Chairman. Please proceed.
Mr. Fullam. Senator Harkin, Senator Enzi, and Senator
Gillibrand, thank you for having me here, and my wife. We're
very honored to be here today. I just want to give you a
story--my story of what happened to me, 9/11 and afterwards.
My name is Martin Fullam. I was a first responder to 9/11.
I'm here to support any legislation that would guarantee
medical care for those whose lives have been significantly
altered by the events of that day. My life, as well as that of
my family, has been significantly affected by that day, and
remains a struggle today.
Nothing prepared us for the scene that awaited us in Lower
Manhattan on 9/11. I responded that day, participating in
rescue efforts, and subsequent days in search capacity. The
hope of rescue grew grimmer with each passing day.
We were covered in dust, soot, powder--you name it. We had
some face masks, mostly paper types, but nothing could
adequately equip us, with the intake of dust we were subjected
to.
The days grew into weeks, and we continued to be assigned
in a search capacity. We took breaks, but--and weren't solely
detailed at Ground Zero, but rotated back there until February
or so.
Some guys were immediately sick, and we all went for
medical monitoring. I experienced the typical cough and upset
stomach that many felt, and tried to get on with my life, as
best I could, but it wasn't until early in 2005 that some
signs, that seemed insignificant, grew to be noticed. My
muscles ached horribly, and my breathing became greatly
compromised. My wife arranged for a specialist in New York
University Hospital to see me. He phoned the next day, after my
appointment and lab tests, and immediately admitted me. Blood
counts for toxins were ``exponentially'' higher than the normal
range. After several weeks of hospitalization, it was confirmed
that I had polymyositis and autoimmune disease. Unfortunately,
what could be aching muscles for some, for me led to a loss of
60 pounds, a breathing capacity of 50 percent, an inability to
walk or even sit up in bed, all within 5 weeks' time.
The doctor was sure of his diagnosis, but had never seen it
hit someone with such vengeance. When he learned of my history
at Ground Zero, he was no longer surprised.
Treatment followed, which allowed for my release, but
weakness and compromised lung capacity have always followed.
Intermittent spurts of improvement showed, but, overall, my
health declined. When my lung capacity suddenly dropped another
30 percent, I became a candidate for a lung transplant, which
occurred in March 29, 2009.
The hope of a better life, post-transplant, has faded, as--
40 pills a day, each with their own side effects, and a
compromised immune system that kept my body constantly fighting
against attack.
My life has been altered, and has not been my own since
I've gotten sick. I can no longer spend time with my family in
the capacity I used to. There are some days I can't drive the
car or go somewhere for a bit, and other days where I can't
leave the front porch. Plans can't be made, as we never know if
it's a day I can handle, or not. I'm not available for my wife
or kids, and I know that there's nothing I can do about it. My
wife has left her job to take care of our needs at home, and
there's not been a normalcy for us since I've taken ill.
I've left a job I love because I can no longer perform it.
Ironically, performing the job is what caused my illness in the
first place. But, I'd do it again.
There's not a person who will forget what they were doing
on that day. The memories are especially etched in those who
lost loved ones and those who battled the thick of it, hoping
to provide the rescue and search services for which the people
of New York depend on their firefighters for.
It was nothing short of a war zone. Being a firefighter put
me in the thick of the scene that day, and many firefighters
that followed. We never questioned our orders or our actions.
We answered a call that day, as we do every other day an alarm
sounds for us. It's what we do. When lives are in danger, we
run in when others are running out. Our training prepared us to
react as we always do, but nothing could have prepared us. It
always affects a firehouse when a rescue is not successful. It
has left its mark in the lingering sick from that day. We
didn't forget to answer our call that day.
I pray for those who have the opportunity to pass
legislation to care for us, the lingering sick, that you will
answer the call, and pass the necessary legislation that will
allow us to live as best we can, without the additional
hardship of financial worries and medical bills. We responded
for those in need, and we are counting on you to do the same.
Thank you for your time.
[The prepared statement of Mr. Fullam follows:]
Prepared Statement of Martin Fullam
introduction
My name is Martin Fullam, a first responder to 9/11. I'm here to
support any legislation that will guarantee medical care for those
whose lives have been significantly altered by the events of that day.
My life as well as that of my family has been significantly affected by
that day and remains a struggle today.
9/11
Nothing prepared us for the scene that awaited us in Lower
Manhattan on 9/11. I responded that day participating in rescue efforts
and subsequent days in search capacity. The hope of rescue grew grimmer
with each passing day. We were covered in dust, soot, powder . . . you
name it. We had some face masks, mostly paper types, but nothing
provided could adequately equip us with the intake of dust we were
subjected to. The days grew into weeks as we continued to be assigned
in a search capacity. We took breaks and weren't detailed solely to
Ground Zero, but rotated back there until February or so.
medical history
Some guys were immediately sick and we all went for medical
monitoring. I experienced the typical cough and upset stomach that many
felt, but tried to get on with life as best I could. It wasn't until
early in 2005 that some signs that seemed insignificant grew to be
noticed. My muscles ached horribly and my breathing became greatly
compromised. My wife arranged for a specialist in NYU Hospital to see
me. He phoned the next day after my appointment and lab tests and
immediately admitted me. Blood counts for toxins were exponentially
higher than the normal range. After several weeks of hospitalization it
was confirmed I had polymyocitis, an auto-immune disease. Unfortunately
what could be aching muscles for some, for me led to a loss of 60 lbs.,
a breathing capacity of 50 percent and inability to walk or even sit up
in bed all within 5 weeks time. The doctor was sure of his diagnosis
but had never seen it hit someone with such a vengeance. When he
learned of my history at Ground Zero, he was no longer surprised.
Treatment followed which allowed for my release, but weakness and
compromised lung capacity have always followed. Intermittent spurts of
improvement showed, but overall, my health declined. When my lung
capacity suddenly dropped another 30 percent I became a candidate for a
lung transplant which occurred in March 2009. The hope of a better life
post-transplant has faded as I face 40 pills a day, each with their own
side effects and a compromised immune system that keep my body
constantly fighting against attack.
personal
My life has been altered and has not been my own since I've gotten
sick. I can no longer spend time with my family in the capacity I used
to. There are some days I can drive in the car and go somewhere for a
bit and other days where I can't leave the front porch. Plans can't be
made as we never know if it's a day I can handle or not. I'm not
available for my wife or kids and I know there's nothing I can do about
it. My wife has left her job to take care of our needs at home and
there's not been a ``normal'' for us since I've taken ill. I've left a
job I loved because I can no longer perform it.
Ironically, performing the job is what caused my illness in the
first place . . . but I'd do it all again. There's not a person who
will forget where they were or what they were doing on that day. The
memories are especially etched in those who lost loved ones and those
who battled the thick of it, hoping to provide the rescue and search
services for which the people of NY depend on their firefighters for.
It was nothing short of a war zone. Being a firefighter put me in the
thick of the scene that day and many days that followed. We never
questioned our orders or our actions. We answered a call that day as we
do every other day an alarm sounds for us . . . it's what we do. When
lives are in danger, we run in when others are running out. Our
training prepared us to react as we always do, but nothing could have
prepared us for the day that awaited us that Tuesday morning. No one
expects to witness the hell we faced. It always affects a firehouse
when a rescue is not successful. The strangers we respond to leave
their mark when we are too late. 9/11 had the double effect of
rendering us helpless in rescuing not only the strangers, but our own.
It further has left its mark in the lingering sick from that day. We
didn't forget to answer our call that day. I pray that those here who
have the opportunity to pass legislation to care for us, the lingering
sick, will answer their call and pass the necessary legislation that
will allow us to live as best we can without the additional hardship of
financial worries and medical bills. We responded for those in need and
are counting on you to do the same.
The Chairman. Well, Lieutenant Fullam, thank you very much
for that very poignant statement. Thank you again, in so many
ways, for your life and your dedication. You know you represent
a lot of firefighters in this country. Thank you.
Ms. Garcia, welcome to the committee. We have your
statement. Please proceed.
STATEMENT OF MARGRILY GARCIA, PATIENT, WORLD TRADE CENTER
ENVIRONMENTAL HEALTH CENTER, NEW YORK, NY
Ms. Garcia. Hello and good afternoon, Chairman Harkin,
Ranking Member Enzi, and members of the committee.
Thank you for inviting me to speak with you today. And
thank you, to Senators Gillibrand and Schumer of my home State
of New York, and all who support the James Zadroga 9/11 Health
and Compensation Act.
My name is Margrily Garcia. I'm a patient in the survivor
program at the World Trade Center Environmental Health Center
Program that's run by the New York City Health and Hospitals
Corporation.
I'm here today because I got sick from the aftermath of 9/
11. My health changed for the worst since then, because of all
the dust and chemicals that I inhaled.
Over 4,700 people are now being treated at the World Trade
Center Program, and thousands more in the fire department and
responder programs. We have similar health issues, but need
different treatments that, with expert, reliable care, we'd all
have an excellent opportunity of living healthier, longer
lives.
The doctors in our communities were unable to properly
diagnose us, and we suffered greatly for it, because they
didn't have research and exposure of treating thousands of
people who were affected by 9/11, like the WTC program.
Please listen to my story, as I am just one example of
thousands who were affected by the same tragedy, and who are
here with me now in my heart.
On that day, I was a healthy 28-year-old woman employed as
a paralegal at a firm on 90 Broad Street, about a 10-minute
walk from the World Trade Center. My coworkers and I evacuated
shortly after the North Tower collapsed. All transportation was
shut down, so we headed to a coworker's apartment in Brooklyn,
to stay together and be safe.
I was covered in dust and soot from head to feet as we
crossed the Brooklyn Bridge, just like that picture, with no
mask. A week later, we all reported back to work in Lower
Manhattan, determined to do the right thing during a time of
national crisis. I'm unable to describe the sights, horrible
smells, and constant dust we all endured for so long. I worked
for 4 more years at this location.
Shortly after 9/11, I developed a persistent cough that
lasted months, and then years, to which doctors found no cure
or temporary relief. My health deteriorated and became impaired
so badly that I was forced to move back in with my mother for
help. I often visited the hospital ERs and doctors' offices.
At my family's urging, I finally called the WTC clinic at
Bellevue Hospital, in September 2006, which now has sites at
Gouverneur Health Services and Elmhurst Hospital Center, and I
have been a patient there ever since.
I had to visit the ER again, the day prior, so I was
exhausted and weak for my appointment. I feared that I was
going to die if I didn't find help immediately. And God
answered my prayers with the WTC program.
There I was diagnosed with both chronic asthma and
sarcoidosis, a kind of scarring that can affect many different
organs in the human body, especially the lungs. This disease
increased among firefighters who responded to the WTC disaster
in the first year after 9/11, compared to previous years.
Sarcoid affected my heart, which had been scarred so badly that
there were disruptions in my heartbeat causing less oxygen to
get into my lungs, and worse. I was living with the possibility
of sudden death. I had to have a pacemaker defibrillator
implanted, which had to be surgically adjusted three times in a
single year to ensure it would indeed save my life.
I'm sorry.
The Chairman. Take your time, take your time, Ms. Garcia.
Ms. Garcia. Most recently, I had sinus surgery, due to
chronic sinus inflammation from all the irritants we breathed
on 9/11. My sinus CAT scan revealed that nasal polyps were
blocking my airways, and my ENT doctor described my CAT scan as
an example of a worst-case scenario, which he asked permission
to use in his seminar, alongside a picture of my face.
I am but a shadow of the woman I was, and I continue to
adjust to this new me, this new normal that is now my life.
Even my wonderful new husband and I must bend to endless
hardships of my chronic illnesses, including fatigue and
getting sick almost constantly, in one way or another.
I will require a lifetime of specialized care, monitoring,
and treatment, like so many others sickened since 9/11.
I am here today, because Federal funding must be reliable
so that care is always available for us. Our very lives depend
on it. Not just year by year, but anyone whose health was
affected by the terrorist attacks on our Nation. The various
WTC healthcare programs we are hearing about today cater to our
special medical needs. So, please show support for the
responder, firefighter, and the community programs comprised of
people who were once strong and brave, and are not so anymore.
In our numbers, even if we have weakened bodies and voices,
I pray with all my heart, though scarred, that you hear and see
us as loud and strong advocates for the bill you are
considering today. Collectively, we are the firefighters,
police officers, other responders and rescuers, those who
helped clean up the area, those of us who lived, worked, and
went to school in the area, made it known that we still refuse
to let the terrorists win. We went back to our workplaces and
our homes and our schools because you said it was safe to do so
and we believed that our city and our country needed us to do
just that. We proudly reported to duty. We knew it was the
right thing to do then. And we humbly ask you today to please
do the right thing for us now.
Thank you for your time.
[The prepared statement of Ms Garcia follows:]
Prepared Statement of Margrily Garcia
Hello and good afternoon, Chairman Harkin, Ranking Member Enzi, and
members of the committee. Thank you for inviting me to speak with you
today. My name is Margrily Garcia, a patient in the survivor program at
the WTC Environmental Health Center, known as the WTC EHC, that's run
by the New York City Health and Hospitals Corporation.
I am a patient there, and I am here today, because I got sick from
the aftermath of 9/11. I also express my gratitude to Senators
Gillibrand and Schumer of my home State of New York, and to all who are
here today in support of the James Zadroga 9/11 Health and Compensation
Act. I honestly feel Dr. Joan Reibman, the Medical Director of the
WTCEHC, could better explain why we in the Survivor program got sick on
that day. I don't know all that she knows but I do know that I am one
of the people who has suffered great health loss since that day.
I am a shadow of who I use to be before 9/11. The person who I've
become started changing soon after 9/11, because of all the dust and
chemicals that I inhaled, the trauma and fear endured that day, and the
uncertainty of the days thereafter.
I am told over 4,700 people are now being treated at the WTCEHC,
and tens of thousands more are in the Fire Department and Responder
programs. I certainly don't know all of them, but I have seen many
sitting next to me at the WTC clinic at Bellevue Hospital. We all have
similar health issues but we're still very different. Some of us are
sicker than others and I pray equally for all alike. It is my fear each
day to not be well or get worse. With expert reliable care, all of us
have a dramatically better chance of living healthier longer lives.
Through no fault of their own, doctors in the community don't know
what our doctors know with their thorough research and specialty care.
I went that route and for years I only got sicker. We need these
programs and doctors who are better qualified to offer the special
medical treatment that we need and deserve as upstanding citizens of
this country. We benefit from their knowledge and expertise from the
years that they have of treating thousands of people who were there
that life-changing day of 9/11.
I ask you to hear my story as just one example of those thousands
who obviously are not physically here today, but each and every one of
them are here with me in my heart.
I was born in New York City and raised in the Bronx. It was friends
and family there who first heard of the special treatment program at
Bellevue Hospital Center for people who worked, lived, or went to
school in Lower Manhattan on September 11, 2001. They urged me to check
it out because they had become increasingly concerned about my constant
debilitating cough and just how much my health had changed after 9/11.
On that day I was a healthy 28-year-old woman employed as a
paralegal at a firm on 90 Broad Street, about a 10-minute walk from the
World Trade Center. My co-workers and I evacuated from our office
shortly after the north tower collapsed. We decided to head to a co-
worker's apartment in Brooklyn, because we wanted to stay together, and
we thought we would be safer there. All transportation was closed down,
and I had no means of getting home to the Bronx on that fateful day. I
was covered in dust and soot from head to feet as we crossed the
Brooklyn Bridge. A week later, I, like thousands of other New Yorkers,
returned to my job in Lower Manhattan determined to do the right thing
during a time of national crisis. Getting to and from work so soon
after the horror of that day was challenging. No one can truly
accurately describe the sights, horrible smells and constant dust we
all endured for so long. Our hearts broke everyday as we tried to
resume our normal lives and daily routine in spite of the remembrance
of many lives lost that day.
Within just a few weeks I developed a persistent cough, which was
surprising and confusing to me because I had rarely been sick before
the terrorist attacks, other than a brief cold or flu. No allergies, no
ill health of any kind that could explain why I suddenly was getting so
sick. Everyone else in my office looked OK to me at the time. My health
deteriorated so badly throughout the years after 9/11 that I was forced
to move back in with my mother because I simply could not manage my
life on my own anymore. My primary care doctor had diagnosed me with
bronchitis and asthma but I didn't respond very well to the medications
she prescribed. I felt like hospital emergency rooms and doctors'
offices had become my second home. By September 2006, my constant
coughing had become disruptive and disturbing to my co-workers at my
new job, threatening my ability to keep my job and the private
insurance that paid for my ever-increasing doctor and ER visits.
At my family's urging I finally called the WTC EHC at Bellevue
Hospital Center in September 2006, which now has sites at Gouverneur
Health Services and Elmhurst Hospital Center, and have been a patient
there ever since.
I was coughing so hard the day I called, the woman who answered the
phone advised me to immediately come in that same day but I couldn't.
Instead I made an appointment and advised my superiors at work of that
appointment. I was afraid that my constant illnesses would compromise
my employment because I had missed so many days already by calling in
sick. I'm still constantly afraid of losing my employment due to my
illnesses. Being here today was a sacrifice to my job but I'm happy to
be here and make your acquaintance. Because so many others cannot, I
want you all to know who I am and how I came to be here to share my
story with you. I had to visit the ER later that same week because my
coughing would not stop, I was in serious pain because of it, and my
asthma was out of control. Despite lack of sleep and pure exhaustion, I
was determined to keep my appointment at the WTC clinic, which helped
people with symptoms similar to mine who hadn't responded to prior
medical treatment. I'd had enough and I thought that I was going to die
if I didn't receive immediate help soon.
I found out my condition was even more severe than that of many
other WTC-exposed patients they had seen. After a series of tests, they
diagnosed me with both chronic asthma and sarcoidosis, a kind of
scarring that can affect many different organs in the human body. I
learned that rates of sarcoidosis increased among firefighters who
responded to the WTC disaster in the first year after 9/11 compared to
previous years.
In my case, though sarcoid is more typically found in the lungs of
WTC patients, it was my heart that had been scarred. It was so bad that
there were disruptions in my heartbeat that was causing less oxygen to
reach my lungs, and worse, I was living with the possibility of sudden
death. I had to have a pacemaker/defibrillator installed to help save
my life. Worse I had to have this surgery done three times in a year
for necessary adjustments to ensure that the pacemaker/defibrillator
would indeed save my life.
Most recently I had to have sinus surgery which I've been told is
not uncommon for many of us who suffer from chronic sinus inflammation
due to all the irritants we breathed in. He showed me my sinus CT scan
and explained that no air was entering through my nose because of all
the nasal polyps blocking my airways. The ENT doctor was impressed with
how bad my case was and asked permission to take a picture of my face
and show it with the CT scan in a seminar he was conducting as an
example of a worst case scenario. I was not impressed. In fact, I was
very sad and concerned that yet something else was very wrong with me.
Sadly, I am a medical phenomenon. I now return every 2-3 months for
a checkup with several specialists, sometimes more often, and my visits
to the ER have considerably dropped off since I became a patient at the
WTC Clinic almost 4 years ago.
My health became permanently impaired at a young age and I know I
will never be like I was before 9/11. I continue to adjust to this new
me, this new normal that is now my life. I know I am blessed with
people who love and support me. I am happy to say that now my life
includes the man I married on May 29th of this year. All newlyweds have
their challenges but he and I must continually adjust to the
debilitating physical and mental hardships that face anyone with
chronic illnesses, including the fact that I so easily get winded and
am almost constantly sick in one way or another.
In addition, I've had to sacrifice leisure time; time that I can
spend with loved ones for medical time. As you all know time is very
precious to us all especially when you're sick and time is threatened
and becomes critical. However, I'm hanging in there, and my husband and
family members are hanging in there with me. But we all know that my
scarred heart and asthma will require a lifetime of specialized care,
monitoring, and treatment.
We all take some comfort in knowing that the program that helps me
has been partly funded from 2008 through 2011 by a grant from the
Federal Government. I am here today to support the 9/11 Health and
Compensation Act because federally funded monitoring and treatment must
be reliable and always available for us because our very lives depend
on it; not just year by year but for anyone whose health was affected
by the terrorist attacks on our Nation. I need to know and trust that
my government will protect and help us live better productive lives.
The WTC healthcare programs you are hearing about today are very
similar in how they go about caring for us who are sick. The responder
programs are mostly overwhelmingly men, good strong brave men who did
the right thing that day and the days and months after. Many of those
men are not so strong anymore. We of the community did the right thing
too. Many of us men, women and children are not so strong anymore
either. However, in our numbers, even if we have weakened bodies and
voices, I pray with all my heart that you hear and see us as loud and
strong advocates for the bill you are considering today.
Collectively we are the firefighters, police officers, other
responders and rescuers. We are the people who soon came after to help
in the clean up and we are certainly those who lived, or worked, or
went to school in the area. We are the same people who not only were
going about our normal lives; we still refuse to let the terrorists
win. We went back to our workplaces, and our homes, and our schools,
because we were told it was safe to do so, and we believed that our
city and our country needed us to do just that.
We proudly reported to duty. We knew it was the right thing to do
then and we humbly ask you today to please do the right thing for us
now.
Thank you kindly for your time and patience with me.
The Chairman. Thank you, Ms. Garcia. Well, congratulations
on your wedding.
Ms. Garcia. Thank you.
The Chairman. Is your husband with you?
Ms. Garcia. No, he's not here with me now.
The Chairman. Oh, I thought I'd recognize him, and
congratulate him, too.
Ms. Garcia. Thank you. Thank you.
The Chairman. Well, a very sad story.
Let me start with you, Ms. Garcia.
We'll start a round of 5-minute questions, here.
Tell us more about the differences between receiving
treatment through your primary care doctor versus going to the
Bellevue program. Tell me again, in your own words, Why is it
important for you to see the doctors in that program?
Ms. Garcia. The providers at the World Trade Center program
were the only doctors that were able to control my
uncontrollable asthma at the time. I had this obnoxious cough
that was literally destroying my life. I was looked upon almost
as a leper in public places. It was very difficult to go to
work, because I was disrupting everybody. There was just no
cure. They gave me all the medications under the sun, and
nothing was helping me, nothing at all. I was in constant
pain--chest pains, back pain. And I was continually going to
the ER, often, because of all of the wheezing and my asthma.
Once I started going to the World Trade Center program--my
ER visits has decreased and my asthma has been more manageable.
The Chairman. Very good. Well, I hope everything's going to
be OK. I hope you'll continue to improve.
Ms. Garcia. Thank you.
The Chairman. Lieutenant Fullam, again, your story is one
that touches us all, because you were part of that picture I
saw in New York that day, when everyone was running away from
the cloud, we saw the firemen going into it.
Tell me again--I don't need any numbers or anything like
that, but, How about your fellow firefighters that you've seen
up there? Are more and more of them--how have they reacted?
Have you seen increased illnesses among those people that were
there that day?
Mr. Fullam. Yes. Well, yes. A good number of my friends
have cancers and different types of diseases. There's four or
five other guys who have the same disease I have, polymyositis,
which, typically, 1 out of 100,000 people have. But, I believe
right now there's six or seven firefighters out of 16,000 that
have that disease, when, typically, the population--1 out of
100,000 is struck. So, that's where they get the presumption
from that disease.
The Chairman. I also wonder about a lot of the firefighters
who came from Wyoming or Iowa and all over the country, that
came there. I must admit to you, I haven't checked with them. I
don't know if there's a registry of them.
Mr. Fullam. I wouldn't know that.
The Chairman. I'm going to find that out, because I have a
feeling----
Well, Dr. Prezant, do you know that?
Dr. Prezant. Yes, Dr. Howard referred to the national
program. The national program has a treatment and monitoring
program for firefighters and every other exposed World Trade
Center responder, no matter where they live in the country. And
also, they were originally eligible to participate in the World
Trade Center Registry.
The Chairman. The reason I ask that is because I remember
talking to some of our firefighters from Iowa who went there at
that time--after they returned--and they were thrown into
actions. A lot of them worked tirelessly for 2, 3, 4 weeks, and
then came back home. And it seemed--and I can't say this for
sure--but, it just seemed to me that they were just told to go
into the mess there, and do what they could. And I am not
certain they had a lot of protections.
Dr. Prezant. Yes.
The Chairman. So, I'm just wondering if we have a good
handle on who those, from around the country, were that came
there at that time. And you're saying we do.
Dr. Prezant. We have a good handle, but I will say that it
took a while to get those programs up and running. That's one
of the lessons learned from 9/11, that we have to take care of
our first responders, no matter where they are.
The Chairman. Are we hearing, around the country, about
illnesses and stuff, from some of those firefighters who came
from around the country, Dr. Melius?
Dr. Melius. Yes. I also do work with a firefighters union,
and at national meetings I've gone to--actually I have talked
to a number of these firefighters who have come in. A number of
them have become ill, a number of them with very serious
illnesses, similar to what's been experienced by the New York
City firefighters. So, we know that.
There has been some outreach to them. But, we need to do
more, because many of them are not aware of the programs.
The Chairman. Yes.
Dr. Melius. Particularly those that, on their own,
individually, volunteered to come in, particularly in the
initial few days afterwards, because there was no listing kept
of them. Those that were on an organized basis that came in
under a Federal program, we have listings; we know where they
came from. But, those individuals that came in, which there
were many, we just don't know. Nobody kept track. And so, there
really is a need to do continued outreach to let them know
about these programs, and to get them in for care.
The Chairman. OK. Thank you very much, all of you. Thank
you.
Senator Enzi.
Senator Enzi. Thank you, Mr. Chairman.
I'll continue with Dr. Melius.
Currently, NIOSH sends funds to New York providers for
monitoring treatment. I'm not sure if you've seen Senator
Gillibrand's bill, but under sections 3001 and 3006, NIOSH
would send funds to New York providers for monitoring and
treatment. Does that basically codify the current practice?
Dr. Melius. Yes, it basically codifies the current practice
at the centers. It's a little bit different, in that it
essentially ties the funding to the individuals, rather than,
through this grant mechanism, to the centers, but would direct
most of the care through the Centers of Excellence, allow
additional Centers of Excellence to be established, if they
meet certain criteria, including centers in other parts of the
country, where there are a significant number of responders,
and medical centers that have the expertise to help those
people.
So, essentially, it does. It also, as I mentioned in my
testimony, would also change the reimbursement methods so it's
tied to the individual--more of a traditional fee-for-service
kind of system, which would provide for better accountability,
and able to follow up on--some of the questions that you were
asking Dr. Howard, early, would be answered.
Senator Enzi. Thank you. I'll follow up on one of those
questions that I asked, and that he suggested that I ask you,
and that's, Why has it been so difficult to document the half a
billion dollars in NIOSH grant money that was spent?
Dr. Melius. The current program is funded through grants.
And grants provide, essentially, broad categories of funding
for different services. So, there's essentially a broad
category for, say, pharmaceuticals, and for others, so, you
break it down--those sort of broad categories.
But, for identifying individuals receiving those, they have
to set up a separate system to track those, which has--as Dr.
Howard testified, have been put into place, but they weren't in
place initially. There was uncertainty about how the program
would be funded, going forward. So, there was some hesitation
doing that. Dr. Howard--NIOSH--also tried to set up a contract
to provide this sort of fee-for-service reimbursement system,
and the administration decided not to do it.
Actually, after the contract had already been announced,
and there were people prepared to compete for that contract, it
was pulled back, and the only part that went forward was for
the national program.
So, the individuals, themselves--their health is tracked
because of the monitoring program. We know a lot about the
individuals. But, that is not tied to the individual treatment
they get, and the individual treatment that's billed for those
individuals. We need to improve that. I think everyone
acknowledges that that needs to be done and would be helpful,
because there should be accountability for this program.
Senator Enzi. And so, we know they're being helped under
one program, possibly, but we don't know if it's being tied in
with all of the services that they need.
Dr. Melius. Correct. There are provisions to identify
people getting services from more than one program for the same
problem, and sort of simple things like that, because we have
all the individuals being followed. The individual medical care
that they get, the services, is much harder to track, under the
current system. We need a new system to do that as we go
forward.
Senator Enzi. OK. Thank you.
Dr. Prezant, first, I want to salute the Fire Department of
New York, and you, for your leadership and service. You hosted
a visit of the HELP Committee staffers, last Congress, and
really helped us to get up to speed on the medical and
scientific issues.
And the last time you spoke with us, about 650 firefighters
had to go on permanent disability because of the World Trade
Center cough. Are more of your firefighters becoming
incapacitated because of the cough? Or is the number holding
fairly steady?
Dr. Prezant. Thank you for your question. First off, when
we call things ``the World Trade Center cough,'' we use that
term broadly to represent all of the respiratory diseases that
are affecting our members, both chronic bronchitis, asthma,
what some people call ``reactive airways dysfunction
syndrome,'' sarcoidosis, pulmonary fibrosis--they all have
manifested themselves as ``World Trade Center cough,'' and as
``severe shortness of breath.''
In terms of the initial numbers that I gave you, there are
people that were still in the pipeline that had not been
awarded disability, and there are still new people coming
forward with disability. So, as of earlier this year, there was
a total of approximately 1,300 FDNY rescue workers, mostly
firefighters and a few EMS workers, who have received permanent
respiratory disability benefits.
Senator Enzi. So, the number has doubled in just the last
year.
Dr. Prezant. That is correct. Prior to 9/11, we averaged
less than 30 cases per year, for respiratory disability, out of
a department that's approximately 15,000 in total membership.
And since 9/11, on an annual basis, we average approximately
150 cases. So, that's a huge increase in the number of cases,
starting to level off, for the first time, this year.
Senator Enzi. I'll change the subject to mental health.
This committee is in charge of that, too. Can you share with
the committee how the department and the unions attack the
stigma that's associated with seeking treatment for mental
illness?
Dr. Prezant. Well, our patients are no different than the
military. They are incredibly proud of the service they provide
this country--and the city, in particular. They're used to
sacrifice. And, as you can see from Lieutenant Fullam, not only
are they used to sacrifice, but they hold themselves with
incredible pride and a stoicism that leads to barriers to
mental health care.
But, we have fought very hard to overcome that. We have,
currently, nearly 2,000 people each year in mental health
treatment through our programs. We've opened up five centers
outside of fire department facilities that we rent in nonfire
department locations, noncity buildings, so that there would be
no stigma to going into that building. We have reached out to
every firehouse with peer counselors, retired firefighters, who
go in there, and they're not there to do psychotherapy or to
provide medication, they're there to say that it's safe to come
forward. And we use that as a system.
Could we do better? Each year we could do better, and
that's what we strive for.
Senator Enzi. How are those numbers holding? Are they
increasing?
Dr. Prezant. They're steady. We're running between, as I
just said, a little less than 2,000 per year, and not
decreasing at all. We have about 12 percent with PTSD. And we
are finding exactly what the psychiatrists told us to expect,
that when you have chronic PTSD, you will develop increasing
numbers of people with depression. They get depressed because
their PTSD is not getting better. And so, now we're having to
rev up to treat a second mental health illness.
Senator Enzi. Can you also tell me about the difference
between the fire department program and what the police do with
their Project COPE.
Dr. Prezant. Project COPE is a mental health outreach
program, as well. Because the police department has a much
greater workforce, and other issues associated with a greater
barrier, because each one of their officers carries a gun,
they've decided to completely separate their mental health
program from their physical health program. And COPE is a sort
of similar peer-type group that reaches out to policemen, but
in a completely non-NYPD, nonofficial way. There's a linkage,
but it's very unofficial. This way, they try to deal with the
barrier that's much greater in their workforce than our
workforce, because of the issue of carrying a gun.
Senator Enzi. Thank you.
I do have some other questions, but I'll submit those in
writing.
I appreciate you letting me go a little longer, there.
The Chairman. Thank you, Senator Enzi.
I have a follow-up question for Dr. Melius. There's still
people who are coming forward now, who you hadn't seen before.
Now, again, I think some people might say, ``Well, they're
taking advantage of the program. They're coming into this
program to get their healthcare needs taken care of.''
Would there be some reason why people might not have come
forward before now, who were around Ground Zero, or who may
have been in that area, in the weeks and months afterward? Is
there any reason why they might not have come forward before
now?
Dr. Melius. I think that there are several reasons. Some is
knowing about the program. Despite all the publicity, I think
there are people that are not aware, particularly in other
parts of the country, I think, more than in New York.
Second, I think that, as Dr. Prezant just said, people
don't like to go to the doctor, particularly working men do
that. And so, they're reluctant to go forward and seek care,
they don't want to know that they might have a problem. They're
concerned that it might affect their current job in some way--
lots of excuses. So, they're reluctant to get examined to find
out. And that's common in general medicine, it's common in this
program.
Third, many of them are seeking care through their own
personal physician. And they discover they're not getting
better, and--over time--maybe their condition is getting a
little bit worse. And so, that's the reason they come forward.
They know about the program. They say, ``Well, I'll finally
come forward. And, maybe if I go to these special centers,
maybe they can improve my treatment, and I'll be able to work
better and feel better.''
There are others--actually, well, just approached by
another one of the building trades business agents recently. He
had a group of veterans. They were operating engineers that
knew about the program, but felt that--they met, I believe, on
a monthly basis, as sort of a military veterans group within
the union--they felt that, really, it was for other people.
Their patriotic duty was, ``Let it take care of the other
really sick people first.'' So, here it is almost 9 years
later, and they're just deciding that, ``Well maybe we really
should go in and get checked out. Some of us are having
symptoms, but--and, you know, we'll finally go forward and take
advantage of this program.''
It's surprising that we're continuing to see, in the
General Responder Program, 250 new people come in monthly,
seeking care. And many of these are sick and need treatment.
So, it's not a population that's just trying to take advantage;
they need the program, and it's important to them.
The Chairman. As a follow-up to that, Dr. Prezant, I have
one more question, and that is, What factors explain why one
person got sick and another one didn't? And, in these kinds of
cases, how do you know that the exposure is the cause of the
symptoms? And why are people just getting sick now? So, there
are kind of three. Why are people getting sick now? How do you
know that it was due to the exposure? And why does one get sick
and someone else didn't?
Dr. Prezant. Well, I wish I could tell you why one person
gets sick and another person doesn't.
The Chairman. But, you did testify that the severity, I
think you testified, was that, depending on how near to Ground
Zero you were in the days, hours, right after.
Dr. Prezant. Absolutely. We've clearly shown that initial
arrival day and where you were and duration of work down there,
are all factors. But, if you match two people with exactly the
same arrival time, exactly the same duration of exposure, you
will find that one has gotten sick and one has not.
That does not dispute the World Trade Center as the cause,
because--I refer to the same issue with cigarette smoking. We
know, and we have fully accepted, the major illnesses caused by
cigarette smoking. But, we all have, thankfully, a relative or
a friend who has smoked tremendously, and has not gotten ill.
And we also have, unfortunately, relatives and friends who have
smoked very little and have gotten ill. There is a genetic/
environmental interaction with every disease. And that doesn't
negate the environmental interaction. It just, once again,
tells us that we are human beings. We are not robots.
Now, in terms of, How do we know this is World Trade Center
disease? Well, at the fire department, we are lucky to have
documented exposures on every person. We still have people
coming in now for treatment, when they haven't before, because
of their stoicism. But, we know that they were at the World
Trade Center, and we have cumulative evidence from decades of
dealing with firefighters--our medical database goes back to
the early 1980s--and we have not seen these diseases. We have a
handful of firefighters with asthma each year before 9/11;
after 9/11, we have overwhelming numbers. We never saw
pulmonary fibrosis or polymyositis before 9/11; now we do. So,
that's the basis for us understanding that this is World Trade
Center-related.
The Chairman. Dr. Melius.
Dr. Melius. Yes, just to follow up on that.
The Chairman. Yes.
Dr. Melius. I think it's important, as Dr. Prezant said and
has shown in his studies, but there are also many other
scientific studies showing that large numbers of people are
getting sick. I mean, this is not something that's occurring in
just a few people.
The Chairman. Right.
Dr. Melius. It's large numbers.
Second, I think it's also important--you know, people's
exposure differs. And even though we see the picture here--what
happened immediately after--even within the community of people
living further away, there were people that had very high
exposures. Their apartments or their workplaces weren't
cleaned. They lived with that dust, breathed that dust for
months.
So, many, many people had long-term and heavy exposures.
And I think that accounts for what we've seen.
Dr. Prezant. A major strength is the fact that you have
essentially four different groups: the fire department, the
World Trade Center Consortium of New York/New Jersey, the World
Trade Center Registry, and the Environmental Health Center at
Bellevue. All of them have slightly different types of
populations and slightly different types of exposures, and all
of them are showing the same thing.
The Chairman. Well, listen. Thank you all very much.
I would yield to my colleague from the House, not for
purposes of a question, but for any statement or observation
that he would want. Again, a distinguished member of the House,
a senior member of the delegation. And it was in his district
in which this occurred.
And then I'd ask Senator Gillibrand if she'd like to also
close up with any comments or observations.
Congressman Nadler, welcome.
STATEMENT OF U.S. REPRESENTATIVE JERROLD NADLER
Mr. Nadler. Well, thank you very much, Senator, for the
privilege of allowing me to sit here, and to make a statement,
and for holding this hearing, at Senator Gillibrand's request.
Let me say, we've been involved in this for a long, long
time, since immediately after 9/11. And we've held a number of
hearings in the House and in New York, and we've seen all of
this.
It is unquestionably the case that there is a massive
exposure, that people have gotten sick, that people who don't
know they're sick yet, will get sick. We also know--in
connection with the last question you asked--that certain
diseases have different latency periods. We've seen most of the
respiratory diseases. We're starting to see the cancers. We'll
see the cancers much more. They have latency periods, I
understand, of 8 to 15 years, generally, so that you wouldn't
expect people to come in with the cancers. We know there were
millions of carcinogens in the atmosphere, everything from
benzene to God knows what. So, we're going to see the cancers.
We're starting to see a few of the soft-tissue cancers now; the
blood cancers will come later. So, those are also reasons why
people didn't come forward earlier.
This legislation is completely necessary, for any number of
reasons, one of which is, we cannot depend on the annual
appropriations process. We have done rather better in the last
few years, in the appropriations process, than prior to that.
But, we have still had occasions, within the last few months,
when some of the institutions have had to send out notices to
affected populations that, ``You're not going to be served
after June 30, because the appropriation didn't come through in
time.'' It's unfair to put people through that. It's unfair to
rely on who may be sitting in these congressional seats 5
years, or 6 years, or 8 years from now, to make sure we keep
getting the appropriations. And we've got to put it on a
systematic basis.
We owe a tremendous moral debt, because it wasn't simply
that the terrorists did this, it's also that the Federal
Government misled people and told them that it was safe to work
in these areas, when it wasn't, and enforced the OSHA laws at
the Pentagon but not in New York. So, there's a tremendous
moral debt owed to people.
And finally, God forbid there's another natural disaster or
another manmade disaster, we have to want first responders to
be able to go into these and--places, and rescue people, and
clean up, and--first responders and contractors--and not worry
about, Will this put their businesses and their families at
risk 5 and 10 years later?
So, it's imperative we pass this legislation. I want to
commend Senator Gillibrand and Senator Harkin. And I want to
commend all the people who've testified today, who've been
active in this for so many years.
I want to commend, in particular, Dr. Howard, who I would
say has been the one official in the executive branch of
government--of the Federal Government--who's been responsive.
And so, thank you.
[The prepared statement of Mr. Nadler follows:]
Prepared Statement of Congressman Jerrold Nadler
Today, I want to join Senator Gillibrand in thanking the
Senate Committee on Health, Education, Labor, and Pensions for
considering The 911 Health and Compensation Act.
Thanks to Senator Gillibrand's hard work and attention to
this matter, I am pleased that we are making progress on this
legislation in both the House and the Senate. Just last month,
the House version of this bill, of which Congressman Maloney
and I are sponsors, was favorably reported out of the House
Energy and Commerce Committee. And in July of last year it
cleared the House Judiciary Committee, of which I am a member.
All of this movement means that we are now within reach of
providing justice to the thousands of first responders and
survivors who are sick because of their unnecessary exposure to
the toxic dust of 9/11.
As we all know, the collapse of the World Trade Center
propelled hundreds of tons of asbestos, nearly half a million
pounds of lead, and untold amounts of glass fibers, steel, and
concrete into a massive cloud of toxic dust and smoke which
blanketed parts of New York City and New Jersey. Fires burned
for many months, emitting a host of deadly substances into the
air.
In the days and weeks after 9/11, thousands of workers and
volunteers selflessly came from across the country to help.
They worked harder and longer than they had ever worked before,
and under unfathomable conditions. And they did not ask
questions, because there was a critical job to be done.
We warned then that the air was not safe and that our
courageous first responders were not being afforded proper
protection from dangerous toxins as they worked on and around
the pile. But the Bush administration and the EPA lulled us all
into a profoundly false sense of security by irresponsibly and
dangerously declaring that the ``air was safe to breathe.''
And, devastatingly, as a result, many people toiled for
months on that toxic pile at Ground Zero without proper
protection. They were unnecessarily exposed to hazardous toxins
because of what the government said and did--or did not do.
And now thousands of them are sick.
The truth is stark: the government failed its bravest
citizens. After its own inaction and malfeasance caused
irreparable harm, the government has failed its citizens for
8\1/2\ long years, because it has failed to fully pay the debt
owed to those citizens.
We must now ensure that the Federal Government provides
long-term, comprehensive health care and compensation to all of
the first-responders and survivors affected by 9/11, in a way
that is not subject to annual politicized fights for budget
dollars.
I don't have to tell you that every day that our sick
responders and survivors have to wait to receive the health
coverage and financial restitution that they need and deserve
is one day too many.
I want to thank the responders and survivors for their all
of their hard work and patience in this struggle; I want to
thank Senator Gillibrand for championing this issue in the
Senate, and Congresswoman Maloney for her continued leadership
in the House.
Let's pass this bill.
Thank you.
The Chairman. Thank you, Congressman Nadler.
Senator Gillibrand.
Senator Gillibrand. I just want to thank you, Chairman
Harkin, for holding this hearing. This is so important to the
first responders, to the community survivors, and to everyone
in New York and throughout the country.
You know, we have first-responders from every State in the
Union. And we have people suffering from these grave illnesses
at every corner of our country. So, just, on all of their
behalves, thank you for holding the hearing.
Thank you, Congressman Nadler, for your leadership and
advocacy throughout this. It's been extraordinary.
And thank you, to all of you, for testifying and being part
of developing a record so that we can move this legislation
forward so that we can finally make sure that families and
firefighters and first responders have the healthcare and the
reimbursement for the costs they've suffered that is so
desperately needed. It is our moral obligation. And because of
your advocacy, we will find a way there. So, thank you so much.
Thank you for your testimony.
Thank you, Mr. Chairman.
The Chairman. Thank you, Senator Gillibrand, and for your
persistence in working with this committee, and with both
Senator Enzi and me, to make sure that we had this hearing to
get the record made. And thank you very much for your
leadership on this crucial issue here in the U.S. Senate.
And again, I thank all of our witnesses.
Lieutenant Fullam, again, thank you. Thank you, thank you.
I can only hope that your health continues to improve, and you
get better.
And, Ms. Garcia, again, same for you. I hope your health
continues to improve and you enjoy many more years of married
life to that new husband of yours.
Ms. Garcia. Thank you so much.
The Chairman. Thank you all very much.
The record will be held open for 10 days for additional
questions.
And with that, the committee will stand adjourned.
[Additional material follows.]
ADDITIONAL MATERIAL
Prepared Statement of Senator Dodd
Mr. Chairman, thank you for calling today's hearing and
allowing the HELP Committee to more closely examine this
critically important issue. This Nation suffered an
immeasurable tragedy on September 11, 2001.
We will never forget the thousands of people who died on
that day. And we cannot allow ourselves to forget about the
thousands more--including first responders, area residents,
workers, students, and others--who still feel the affects of
those attacks and are sick and getting sicker from exposure to
the mix of toxins released from the collapse of the World Trade
Center (WTC) Towers. As today's experts will testify and the
published, peer-reviewed research in our leading national
medical journals shows, the rates of asthma, the WTC cough,
decreased lung function, sinus problems, posttraumatic stress
symptoms, and many other health effects are on the rise.
In my own State, thousands of residents dropped what they
were doing in the days after 9/11 and showed up at the WTC site
to volunteer in any way they could. Firefighters from
Connecticut communities nearest to New York, including
Fairfield, Greenwich, Norwalk and Stamford--responded quickly
on September 11 and several hundred responders from Connecticut
were officially sent to help in the rescue and recovery
efforts. More than 800 residents in my State are enrolled in
the World Trade Center Health Registry and several dozen are
participating in either the FDNY WTC Medical Monitoring and
Treatment Program and the WTC Environmental Health Center at
Bellevue Hospital Center.
The Federal Government has an obligation to help the heroes
of 9/11 as well as all others who were exposed to dust and
debris, including residents and children. That help should
include mental and physical health considerations as well as
access to the Victims Compensation Fund. It is important,
especially as it pertains to children, that we are properly
identifying and treating their physical and mental health
needs. Countless children who were not at the WTC site continue
to live with the impact of having lost a mother, a father, a
grandparent or a sibling. Their needs must not be overlooked.
As the Chairman of the Subcommittee on Children and
Families and the author of legislation creating the National
Commission on Children and Disasters, I am particularly
concerned about the needs of children and ensuring that
programs receiving Federal resources are adequately monitoring
and caring for the most vulnerable in our population. In my
questioning, I look forward to discussing the response of the
Federal Government and city of New York to children and 9/11.
For more than 2 years, I was part of a bipartisan HELP
Committee effort led by former-Senator Clinton that included
the late-Chairman Kennedy, Ranking Member Enzi, and Senators
Burr and Coburn. Our purpose was to craft a bipartisan health
and compensation program for those who are suffering
potentially life-long health effects of 9/11. I am disappointed
that this effort did not result in legislation. It is something
I deeply regret. However, I am a proud cosponsor of Senator
Gillibrand's legislation, the James Zadroga 9/11 Health and
Compensation Act of 2009. I hope to see action on this
legislation soon.
Prepared Statement of Senator Casey
Thank you, Chairman Harkin, for calling this important
hearing. I would like to thank Senator Gillibrand for her
testimony, and also extend thanks to all of the panelists for
their work, their sacrifices, and their testimony here today.
September 11, 2001, was a day of horror and tragedy for
America. We still feel the loss of the thousands who died that
day, in New York, at the Pentagon, and in Pennsylvania. We have
spent the last 9 years honoring their sacrifice and ensuring
that their memories will not be forgotten.
However, we have another commitment that we must remember,
and that is our commitment to those who still live with the
scars of that awful day--the rescue workers, the recovery
workers, and the people who worked, lived, or went to school
near the World Trade Center. The dangers that they faced that
day endure. Many of them have suffered health effects since
that 9/11. Some of them have died as a result; others are
severely incapacitated. We owe these Americans our gratitude
and our help.
The health effects of 9/11 may not follow ``traditional''
paths for similar illnesses. Individuals were exposed to many
different substances, some in large quantities on 9/11, and
some in smaller doses over the days and weeks and months that
followed. Fortunately, the programs that were created in the
immediate aftermath of 9/11 have tracked and monitored the
health of these individuals, but it is clear more must be done.
As a cosponsor of Senator Gillibrand's bill, I believe that
we must guarantee a steady source of support for our valiant
first responders and community members. I applaud the committee
for scheduling this hearing and thank the witnesses for their
testimony today.
Prepared Statement of Michael R. Bloomberg, Mayor, City of New York
Thank you Chairman Harkin, Ranking Member Enzi, and the other
distinguished members of the committee for convening this hearing on S.
1334, the James Zadroga 9/11 Health and Compensation Act. I also want
to particularly thank Senator Gillibrand for introducing this
legislation to establish a sustained, long-term 9/11 health program.
Passing this bill would, at long last, fully engage the Federal
Government in resolving the health challenges created by the attack on
our entire Nation that occurred on 9/11. The destruction of the World
Trade Center and the attacks on the Pentagon were acts of war against
the United States. People from every part of the country perished in
the attack, and people from all 50 States took part in the subsequent
relief and recovery efforts. And that makes addressing the resulting
and ongoing health effects of 9/11 a national duty.
This legislation achieves what WTC responders, area residents, and
other survivors of the 9/11 terrorist attacks have long been seeking--
sustained funding to treat those who are sick, or could become sick
because of 9/11; continued research on potential WTC health effects;
and the re-opening of the Victim Compensation Fund so that those harmed
as a result of 9/11 are fairly compensated without having to show that
anyone but the terrorists were at fault.
Before detailing the virtues of this legislation, I'd like to
review some essential facts about the scope of this problem and the
efforts the city has made to address it. Four years ago, as the fifth
anniversary of 9/11 approached, I directed city agencies to undertake a
thorough investigation of the health problems potentially created by
the terrorist attack. The report published 6 months later established
beyond question that many people suffered physical and mental health
effects as a result of the World Trade Center attack and its aftermath.
They include firefighters and police officers, community residents,
schoolchildren, and owners and employees of neighborhood businesses,
and also construction workers and volunteers from across America who
contributed to the heroic task of clearing the debris from the World
Trade Center site. The report made clear that the ultimate scope of
these health effects is still unknown; that they must continue to be
studied; and that those who are sick or could become sick must be
monitored and treated with the best possible care.
S. 1334 achieves those aims, but New York City has not waited for
Federal funds to address this issue. For instance, the city funded the
launch and expansion of the WTC Environmental Health Center at our
Health and Hospitals Corporation (HHC) before receiving any Federal
dollars; and we've launched a number of public outreach campaigns about
9/11 health problems and how to get help.
wtc centers of excellence and the wtc health registry
The Federal Government has been an important partner in this area.
The annual appropriations that Congress and the President have made
over the last several years have funded the World Trade Center program
at Mount Sinai, as well as the longest-running health response to the
attacks--the FDNY WTC Medical Monitoring and Treatment Program.
The FDNY Center of Excellence provides monitoring and treatment to
the firefighters and other FDNY personnel who participated in WTC
rescue, recovery and clean-up. With the help of Federal appropriations,
the Program has provided specialized WTC health care to thousands while
generating leading research on the health impacts of 9/11. Lacking
long-term funding, however, the Program faces perpetual uncertainty
about its ability to continue providing clinical services.
In addition, the HHC WTC Environmental Health Center was awarded in
2008 a 3-year grant for $10 million a year. This funding is critical to
allowing the program to continue addressing the physical and mental
health needs of community members.
Finally, short-term Federal grants enabled the establishment of the
WTC Health Registry (WTCHR), which this bill will continue to fund on a
permanent basis. The Registry is a partnership between the city and the
Federal Government that is the largest effort of its kind in history.
It includes more than 71,000 people from every State in the country who
reported being exposed to the aftermath. Over 20 percent of the people
in the Registry are from outside the New York Metropolitan region. This
reflects the number of people from throughout the country who were in
New York at the time of the attacks or who came to New York soon after.
Efforts by the Registry, FDNY, Mt. Sinai, the HHC WTC Environmental
Health Center and the reports generated by the Medical Working Group--
which we convened to keep us all abreast of the newest research and
resource-needs for 9/11 health issues--are central to the city's core
approach to this issue: dedicating resources based on the latest
science and medical research. And the data shows that 9/11 health
issues continue to be a serious problem.
Registry data confirm continued high levels of reported post-9/11
asthma and Post-Traumatic Stress Disorder (PTSD) among Registry
enrollees 5-6 years after the attacks. Adverse respiratory health
symptoms, while most frequently reported by rescue and recovery
workers, have also been reported by Lower Manhattan residents, office
workers, and passersby on 9/11, and more than 20,000 directly exposed
adults may have received new asthma diagnoses since the event. PTSD
levels were high at baseline and remained elevated at the time of the
last survey in 2006-07.
The Registry will soon launch the third major health survey of all
enrollees, 10 years after 9/11. This survey is the only tool that
gathers critical health information from a diverse group of individuals
exposed to the WTC disaster--including rescue, recovery, clean-up
workers, Lower Manhattan community members, office workers and
children. As has been reported, however, the Registry is facing funding
shortfalls that threaten its ability to carry out the survey--
highlighting the need for sustained, long-term funding.
S. 1334 provides for the long-term sustainability of the city's
Centers of Excellence and the efforts of the WTC Health Registry. It
would establish much-needed year-in, year-out Federal support for
monitoring, screening, and treatment of health-
related problems among eligible 9/11 responders and community
residents. As part of this, the bill would maintain the WTC National
Responder Program, providing monitoring and treatment for the many men
and women who came from across the country to help in WTC rescue,
recovery and clean-up operations.
In addition, the bill funds essential ongoing medical research,
including the WTC Health Registry, so that we can better understand
what the health impacts of 9/11 are, and what resources we need to
address them. Finally, the bill reopens the Victim Compensation Fund so
that people who were harmed by the terrorist attacks can get
compensation fairly and quickly without having to prove that the city,
the contractors, or anyone else but the terrorists were at fault.
The bill's provision for the long-term future of the centers of
excellence is critical. While Federal funds have supported important
research and treatment efforts, the uncertain and fragmented nature of
that support has needlessly jeopardized the future of these programs.
Passage of this bill would make that future secure.
To ensure that funding goes only to those whose conditions are due
to 9/11, the legislation includes important controls and cost-
containment standards that the city fully supports. In addition, the
bill makes the city responsible for paying 20 percent of the cost of
care provided at our public hospitals and clinics. This is a
significant obligation, but we accept it. It will give us a powerful
incentive to work with Federal health officials to ensure that
expensive and finite medical resources only go to those who truly need
them.
Less than 3 months from today, we will observe the ninth
anniversary of 9/11. Too much time has passed without action on this
legislation. Let's work together to ensure that those who survived the
attacks, and those who risked their lives to save others, receive the
health care that they deserve.
Prepared Statement of Ann Warner Arlen
a personal account of 9/11 health effects
My name is Ann Warner Arlen. I live a few doors south of Houston
Street on Sullivan Street, west of SoHo. Before September 11, 2001, the
World Trade Center was just a short walk south.
My apartment has a garden, part of an open core at the center of
our block. On September 11 my back was to the garden when I heard the
roar of the first plane go over our block, sounding too low, gunning
its motors, followed by a crash.
In the street a group of us watched the towers burn. When one of
the towers turned grey and slid down the horizon, people screamed. A
man appeared at the edge of the group, eyes red, face chalky with dust,
trying to speak. Finally he said he had been in a building where people
jumping from the towers fell so close by he could identify them. He
wanted to tell the families so they could know. He came to my place to
call his own family. On the TV the second tower went down.
The next day the air was filled with the dust. Going to an
emergency community meeting at Bleecker and West Broadway, I had a
bandana around my nose and mouth, yet was grinding the dust and grit
between my teeth. The following day the dust was still in the air. The
police had Houston Street cornered off. An officer gave me a mask.
After that the thick black smoke rising from the World Trade Center
during the day settled as a pall over the Downtown area at night. The
central core of our block held the smoke in place, allowing it to seep
into the rear-facing apartments. Every morning for 3\1/2\ months I woke
to an apartment filled with smoke, head aching with sinusitis and chest
bubbling with bronchitis. With so much death so close by, it seemed not
to matter.
A combustion-scientist friend described the smoke as a combination
oil fire, crematorium and mass burn incinerator. During the day, when
the smoke lifted, the smell of burning flesh persisted. It was a relief
when someone wrote about it or mentioned it. That was rare. I felt that
we were carrying around inside of us the people who had been vaporized,
and that it was a good thing.
Two years later, in October 2003, I did jury duty in the Supreme
Court building on Foley Square, in a courtroom facing the WTC site and
still smelling of WTC smoke. Court workers who had offices were running
air purifiers. As we jurors were seated, our eyes began to redden and
noses ran. My sinusitis and bronchitis returned and got steadily worse.
Following jury duty, after many weeks, the bronchitis became acute, and
my doctor sent me for a chest X-ray. The radiologist made an initial
diagnosis of obstructive lung disease. My doctor said that such a
diagnosis was not uncommon in tall people, and that in any case she
would not recommend a pulmonary function test because there would be
little to be done about it anyway. She prescribed Mucinex for the
mucous in my chest, and it helped.
After that, when I got a cold or sniffle, I often got bronchitis.
To keep it in control, I worked hard to build my immune system, with
success.
However, that was of no avail last December when an uncontrolled
construction dust situation in our building (an 1875 tenement building
with lathe and plaster, not wall board) triggered an abrupt attack of
the bronchitis, sinusitis, and aching chest, which rapidly developed
into respiratory illness.
This time I was able to go to the Bellevue World Trade Center
Environmental Health Center, was given a pulmonary function test and
relevant lab and other tests. I was impressed with the staff and with
the facility itself. I was grateful finally to be evaluated by this
``center of excellence,'' experienced in 9/11 exposures, their
symptoms, consequences, and treatment.
The unique experience of these centers seems to me necessary if the
consequences of 9/11 exposures are to be properly addressed and their
cascading health consequences prevented.
Prepared Statement of Joan Reibman, M.D., Associate Professor of
Medicine and Environmental Medicine; Director, NYU/Bellevue Asthma
Center; Medical Director of Health and Hospitals Corporation, WTC
Environmental Health Center
Good morning, Chairman Harkin, Ranking Member Enzi, members of the
committee. My name is Joan Reibman, and I am an associate professor of
Medicine and Environmental Medicine at New York University School of
Medicine, Medical Director of the WTC Environmental Health Center, and
an Attending Physician at Bellevue Hospital, a public hospital on 27th
Street in NYC. I am a specialist in pulmonary medicine, and for the
past 18 years, I have directed the NYU/Bellevue Asthma Center. I am
pleased to be able to testify today on behalf of the local workers,
residents and students of downtown New York who were exposed to World
Trade Center dust and fumes.
I am very pleased to be here today to support S. 1334, the James
Zadroga 9/11 Health & Compensation Act of 2009, which will provide
needed long-term funding for the monitoring and treatment for those
members of the community exposed to toxic substances as a result of the
9/11 terror attacks. Many of these individuals, unfortunately, have
become patients with long-term health needs related to respiratory as
well as other physical and mental health illness.
First, I would like to thank this committee and the members of the
Senate who have shown their continuing and extraordinary support for
our patients and our program, especially Senator Gillibrand and Senator
Schumer. The efforts in Congress resulted in an RFP, which we applied
for, and in September 2008, we were awarded funding for a 3-year
program--$10 million each year, for 3 years.
populations at risk
Our program serves, the local workers, residents and students and
children exposed to World Trade Center dust and fumes. On the morning
of 9/11 over 300,000 individuals were at work in the area, or in
transit to their offices. Many were caught in the falling debris and
the initial massive dust clouds as the buildings collapsed--these are
the thousands whom we saw in video and still photographs coated in
white, running for their lives. In the great outpouring of pride an
patriotism after 9/11, many local workers returned to work 1 week
later, the massive WTC clean-up and rescue operation still in full
force, and not all buildings completely cleaned or decontaminated.
As you know, Lower Manhattan is also a dense residential community;
almost 60,000 residents of diverse racial and ethnic backgrounds live
south of Canal St. (U.S. census data). They are economically diverse;
some living in large public housing complexes, others in newly minted
coops. Lower Manhattan is also an educational hub; there are over
15,000 school children, and large numbers of university and college
students. Some children were locked in their buildings; others were let
out and told to run. The dust of the towers settled on streets,
playgrounds, cars, and buildings. Dust entered apartments, schools and
office buildings through windows, building cracks, and ventilation
systems.
Each of these groups had potential for exposure to the initial
dust, the resuspended indoor and outdoor dust, and the gas and fumes
from the fires that burned at least through December 2001.
initial health effects in community populations
Exposure assessments inform us as to components of the dust and
fumes. However, the only way to really assess health risk is to study
health effects in exposed populations. As pulmonologists in a public
hospital, we sought to determine whether the collapse of the buildings
posed a health hazard soon after the event. With funds from the Centers
for Disease Control, and in collaboration with the New York State
Department of Health, we looked at the rate of new respiratory symptoms
in local residents after 9/11. This first such study, and the only
study with a control population, was completed just over a year after
9/11 and the results have been reported in three peer-reviewed
publications (Reibman, et al. The World Trade Center residents'
respiratory health study; new-onset respiratory symptoms and pulmonary
function, Environ. Health Perspect. 2005; 113:406-11. Lin, et al. Upper
respiratory symptoms and other health effects among residents living
near the world trade center site after September 11, 2001, Am. J.
Epidemiol. 2005; 162:499-507, Lin, et al., Reported respiratory
symptoms and adverse home conditions after 9/11 among residents living
near the World Trade Center. J. Asthma 2007; 44:325-32).
We surveyed residents in buildings within 1 mile of Ground Zero,
and, for purposes of control, other lower-risk buildings approximately
5 miles from Ground Zero. Analysis of 2,812 individuals revealed that
new-onset and persistent symptoms such as eye irritation, nasal
irritation, sinus congestion, nose bleed, or headaches were reported by
43 percent of the exposed residents, more than three times the number
reported by control residents. An over 3-fold increase in lower
respiratory symptoms including cough, shortness of breath, and a 6.5-
fold increase in wheeze (10.5 percent of exposed residents versus 1.6
percent of control residents respectively) was reported. An almost two-
fold increase in unplanned medical visits and use of medications
prescribed for asthma in the exposed residents compared to the control
residents was also reported. Residents reporting a longer duration of
dust or odors or multiple sources of exposure had greater risk for
symptoms compared to those reporting shorter duration. These data have
now been replicated and expanded with publications from the New York
City DOHMH WTC Registry, which has monitored a cohort of over 71,000
individuals recruited after 2003. The Registry's data document reports
of new onset, and persistent respiratory symptoms and asthma diagnoses
in local workers, evacuees, residents and school children, as well as
in the responders. The data also document reports of extensive mental
health symptoms in all populations.
current knowledge about health effects in community populations
After 9/11, we began to treat residents who felt they had WTC-
related illness in our Bellevue Hospital Asthma Clinic. We were then
approached by a community coalition and together began an unfunded
program to treat residents. We were awarded an American Red Cross
Liberty Disaster Relief Grant in 2005 to set up a medical treatment
program in residents and responders. A year later, we received
additional philanthropic funding, and major funding from the city of
New York to provide evaluation and treatment of individuals with
potential World Trade Center-related illnesses. This program, now
called the WTC Environmental Health Center (WTC EHC), was expanded to
include three sites: Bellevue Hospital, Gouverneur Clinic, and Elmhurst
Hospital. In September 2008, we received our first Federal funding
under a grant awarded from the National Institute for Occupational
Safety and Health (NIOSH) providing 3 years of support. We are
extremely grateful for the city and Federal funding, but we need
Federal support to sustain the program over the long term.
The WTC Environmental Health Center is an interdisciplinary medical
and mental health program that has evaluated and is treating
approximately 4,700 patients as of June 2010. We continue to receive
inquiries each week; whereas most come from local people, we have
received calls from individuals living in about 23 other States. To
enter our program, an individual has to have a medical or mental health
complaint; we are not a screening program for asymptomatic individuals.
To date, our patients are almost equally men and women and of diverse
race/ethnicity. Forty-six percent are uninsured. Some have never sought
medical care before entering the program, others have been unable to
seek care for lack of insurance, and many have been seeing doctors for
years since 9/11, with recurrent bronchitis, pneumonia, sinusitis, or
unexplained shortness of breath.
As described in our most recent article, these individuals,
residents, local workers, as well as clean-up workers, have symptoms
that began after 9/11 and that remain persistent at the time of
enrollment in the program. Symptoms include persistent rhinosinusitis
(40 percent), and asthma-like symptoms of cough (47 percent), shortness
of breath (67 percent) or wheeze (27 percent) for which they continue
to need care more than 7 years after 9/11 (Reibman, et al. J.
Occupational and Environmental Medicine, May 10, 2009). One third of
our population have lung function that is below the lower limit of
normal; 40 percent have shortness of breath at a level that is
consistent with significant activity limitation, 10 percent have the
highest score on a standardized scale of breathlessness used for
disability assessment. These are people who report that they were
previously working and functional, and many were highly physically
active--even training for marathons--and now require daily medication
to allow them to walk a few city blocks. Over 40 percent of the
population in the WTC EHC score positive for PTSD symptoms and nearly
50 percent have complex mental health symptoms, including PTSD combined
with depression and anxiety.
The persistence of respiratory and mental health symptoms in WTC-
exposed resident and local worker populations is also supported by
additional epidemiologic studies: a follow-up of our first resident
study (Lin, et al., International J. Occupational and Environmental
Health, 2010;16:44-52), and the most recent publication of the larger
WTC Registry population (Brackbill, et al., Journal of the American
Medical Association, 2009;302:502-16).
how do we assess whether an illness is wtc-induced?
We are often asked how we know that these people became sick from
WTC exposures. We have no simple test to determine whether any
individual illness is related to WTC exposure. We have epidemiologic
data to suggest adverse health effects, but how do we apply that
information for an individual. We assess attribution based on the
presence of exposure, temporal sequence of symptoms, and a particular
constellation of symptoms. Studies from all the WTC programs, most of
which show consistent findings, provide us with the larger
epidemiologic and picture and context that inform our daily clinical
practice.
what medical illnesses are we treating?
We now believe that at this time, the most common, although not
exclusive illnesses resulting from WTC dust and fume exposure involve
the upper and lower respiratory tract. The respiratory abnormalities
have varied patterns. Many patients have chronic rhinosinusitis. Most
of our patients have irritant-induced asthma, some have unremitting
cough. Although we can treat this, these individuals may require
prolonged courses of inhaled corticosteroids and bronchodilators,
sometimes even oral steroids. Many will require these medications for
years, if not for life. Others show a process in their lungs that may
consist of a type of inflammation, a granulomatous process that is like
an illness called sarcoid. Others have lung diseases that affect not
only their airways, or breathing tubes, but also the air sacs that
allow for the exchange of oxygen and carbon dioxide. Some have
pulmonary fibrosis, characterized as scarring or permanent damage in
the lungs, and have received, or are awaiting lung transplants.
how many people in the community are sick?
We are asked this question repeatedly. We are asked this for health
information, for budgetary reasons, and for planning issues. We cannot
answer the question. Our program consists of a self-referred
population, and so we cannot determine the prevalence of illness in the
community. Unfortunately, there was no government-sponsored screening
program for community members in the immediate aftermath of the
disaster. We are therefore faced with the nagging question of how many
people are ill. The best information that we can avail ourselves of
comes from the NYCDOHMH WTC Registry. Estimates of burden of illness
derived from this program suggest that 3,000 to 9,000 adult community
members (residents, building occupants, people in transit) have
developed new onset asthma and 38,000 have developed PTSD (Farfel, et
al. J. Urban Health 2008; 85: 880). Perhaps this is one of the most
important lessons we can learn for the future. All potentially exposed
communities need to be screened if there is a potential risk of adverse
health effects. If that system had been put in place, we might be
better able to answer this burning question.
why are some people sick, and others not?
The level and type of exposure clearly plays a role in determining
who will or has become ill. We continue to learn about this from
ongoing studies. However, there is also a role for individual
susceptibility. This is similar to tobacco-induced disease: some
smokers remain healthy, while for others, tobacco causes lung disease,
cancer, and heart disease. Only through the existence of long-term
Centers of Excellence will there ever be sufficient data collected to
attack such medical puzzles.
will there be late emergent diseases?
This is of course the question at the back of everyone's mind. Will
there be a high rate of cancers in the adult community, will children
with early life exposure have long-term effects, including cancers. We
just completed a 2-day meeting with many outside cancer epidemiology
experts to discuss the best way to examine this question. Without long-
term Centers of Excellence, including Centers that treat community
members, and without funding for this research, we will never have
answers.
why do we need s. 1334, the james zadroga 9/11 health and compensation
act?
Many peer-reviewed published articles as well as our clinical
experience, report that large numbers of community members--residents,
students and local workers were subject to environmental exposures on a
large and unprecedented scale and that these exposures had measurable
medical consequences. We now know that all these years later, these
men, women and children have persistent symptoms and will require
continued evaluation, treatment, and monitoring for years to come.
The bill before this committee today provides much-needed long-term
stability for our program and for our patients. The bill provides long-
term, sustained funding to monitor and treat those who are sick or who
could become sick because of exposures related to the 9/11 attacks, and
it funds critical research so that we can understand the long-term
health impacts of the terrorist attacks. Importantly, the bill includes
Federal funding to provide long-term monitoring and treatment for
residents, area workers and community members. The WTC Environmental
Health Center at the city's Health and Hospitals Corporation is the
only Center for treatment of this community.
Support for the WTC Environmental Health Center has been provided
through philanthropy and New York City, with Federal funds available
only for the last 2 fiscal years. The short term and uncertain funding
stream makes fiscal planning difficult and prevents continuity of care,
the hallmark of quality care for chronic conditions.
The bill takes care to define eligibility for the community
program. There are specific geographic areas that people must have
lived, worked, or attended school in on September 11 or within a
defined time-period to be eligible for treatment. These boundaries
reflect the best data currently available, but we also recognize that
we do not know the full extent of the health impacts of the disaster.
People who meet these criteria are ``eligible'' for treatment.
Eligibility is again reviewed by a doctor with experience treating WTC-
related conditions. Using standardized questionnaires and a medical
assessment, health professionals determine whether or not a patient is
eligible for federally reimbursed treatment; and even then, that
decision is subject to review and certification by the Federal WTC
administrator. These are tough standards but ensure that only those who
are sick because of 9/11-related exposures will be treated under the
WTC health program.
The bill caps the number of responders and community members who
can get monitoring or treatment and that can newly enter the federally
supported community program. The bill sets that number at 15,000
maximum along with the 4,700 current patients. Again, these limitations
are based on the best available information about how many people could
potentially seek treatment, and while we think they will be sufficient
to provide treatment to anyone who may need it, there are reporting
requirements in the bill so that Congress will be told if those caps
are approached.
The bill also mandates the establishment of Quality Assurance and
Fraud Prevention programs to prevent funds from being used for any
purpose other than to monitor and treat those affected by the 9/11
attacks. The city also has its own incentives to contain costs because
the city has agreed to be responsible for paying a percentage of the
cost to treat anyone treated at a WTC Environmental Health Center
serving the community members. Finally, the Federal program will be
secondary payor to both Workers Compensation payments and to applicable
health insurance available to an eligible community member with a WTC-
related condition. The program will provide a safety net for
individuals who have inadequate insurance, or who do not have health
insurance.
Research on diseases related to the 9/11 attacks is essential. The
bill ensures that critical 9/11-related research continues. Long-term
research is the only way that we're going to be able to develop a full
understanding of the health impacts of
9/11. The Centers of Excellence have all contributed to research
efforts. The research funded in the bill will make it possible for both
patients and clinicians to have the necessary information to make
informed decisions about health treatment and to make available the
best science to determine what conditions qualify for treatment under
this bill.
We need the full and predictable sources of Federal funding which
this bill provides. I urge you to support this bill to help us ensure
first-rate care for all of those who desperately need it.
I thank you for the opportunity to submit testimony today.
Pertinent funding to Joan Reibman, M.D.:
2001-02: CDC, World Trade Center Residents Respiratory Survey
(Institutional P.I, Lin P.I.)
2001-03: NIH, NIEHS, World Trade Center Residents Respiratory
Impact Study: Physiologic/Pathologic characterization of residents with
respiratory complaints (P.I.)
2004-05: CDC, NIOSH WTC Worker and Volunteer Medical Monitoring
Program (P.I.)
2005-2007: American Red Cross Liberty Disaster Relief Fund (P.I.)
2006-011: New York City funding for WTC Environmental Health Center
(Linda Curtis, Bellevue Hospital, PI)
2008-2011: CDC, NIOSH World Trade Center Non-Responder Program, New
York City Health and Hospitals Corporation
Response to Questions of Senator Enzi, Senator Dodd, Senator Casey, and
Senator Franken by John Howard, M.D.
senator enzi
In your verbal testimony, you indicated that, beginning in 2004,
NIOSH installed procedures to account for how 9/11 health funds were
spent.
Question 1a. Please provide a copy of each version of those
procedures, and identify their respective effective dates.
Answer 1a. Beginning in 2004, NIOSH implemented the World Trade
Center (WTC) Responder Health Consortium program by announcing a
Request for Applications (see Attachment 1) and awarding eight
cooperative agreements to support six Clinical Centers and two Data
Centers. Appropriate procedures to account for expenditure of funds
were put in place for these awards by placing requirements in the award
documents (see Attachment 2), which included standard procedures for
submitting annual progress reports, plans for the next year with a
budget request, Financial Status Reports that are due 90 days after the
end of the budget year, and Cash Transaction Reports that are due 45
days after the end of each Federal fiscal year. There are also
references in item 8 of Attachment 2 to OMB administrative guidelines,
HHS Grant Administration Regulations at 45 CFR part 74 and 92, and
other HHS, PHS, CDC and NIOSH grant administration policy statements,
which the grantees agreed to comply with as a condition of their
awards.
Beginning in 2007, the program was authorized to provide funding
for the treatment of WTC-related health conditions detected through the
screening and monitoring exams, and NIOSH added requirements to the
Notices of Award to implement quarterly reporting of information on
responders participating in the program (see Attachment 3). After
discussions between NIOSH and the Consortium members, quarterly reports
were adopted to provide more information to NIOSH on the number of
participants and the overall costs of the monitoring and treatment
components (see Attachments 4 and 5, respectively), which were used to
evaluate the status of the program.
Question 1b. Please provide a copy of each cooperative agreement,
grant, contract or other like instrument between NIOSH and any grantee,
vendor or other counterparty regarding 9/11 health matters.
Answer 1b. The latest award documents establish the current
relationships between NIOSH and all of the components of the WTC
Program (see Attachment 6).
Question 1c. Please indicate when Mt. Sinai or another party acted
as a subgrantor, provide copies of subgrant procedures and agreements,
and identify their respective effective dates.
Answer 1c. The Mount Sinai School of Medicine funded the National
Responder Monitoring Program through a subcontract, within their grant
budget, from 2005 to 2008. Mount Sinai was responsible for providing
monitoring services for responders outside of the NY-NJ metropolitan
area and issued contracts to several clinics and to QTC, Inc. to
conduct the monitoring exams. Mount Sinai used their institutional
procedures to establish those contracts, which were required to be in
compliance with the standard award provisions mentioned in the answer
to question 1a.
Question 1d. Please identify and provide contact information for
the NIOSH employees responsible for administering the procedures and
agreements.
Answer 1d. Kelley Durst, MPA, Associate Director for Planning &
Performance, National Institute for Occupational Safety and Health,
Centers for Disease Control and Prevention, 1600 Clifton Road, NE,
Atlanta, GA 30333; Mailstop: E-20; Phone: 404-498-2500; Fax: 404-498-
2573; Email: [email protected].
Question 1e. Please identify and provide contact information for
all grantee, vendor or other counterparty employees responsible for
administering the procedures and agreements.
Answer 1e. Contact information for Principal Investigators of the
grants and the Project Manager of the contract is provided in
Attachment 7.
Question 1f. Please provide a detailed breakdown of how the $475
million appropriated to NIOSH for 9/11 health purposes was spent. If
you cannot provide a complete answer, please explain each information
gap, and furnish as complete an answer as you can.
Answer 1f. Awards for 9/11 health purposes, plus Federal operating
costs, account for $461 million of the $476 million appropriated, as
shown in the attached table (see Attachment 8). The remaining $15
million is unobligated and is available to provide supplemental funds
to the awards if needed to ensure that the planned objectives are met
and to cover potential cost increases of patient care. Unobligated
funds that remain at the end of fiscal year 2010 will be carried over
to fiscal year 2011.
Question 2. Please provide a detailed breakdown by grantee or
vendor of sums that the NIOSH program has recouped from workers
compensation, disability, private health insurance, public entitlement
programs and other benefit delivery systems.
Answer 2. To date, three of the Clinical Centers have recouped a
total of $136,220 funds from workers compensation as shown in the table
below. The Community Program has filed claims for recouping funds from
private health insurance companies, but no funds have yet been reported
to NIOSH.
------------------------------------------------------------------------
Institution Recouped Amount
------------------------------------------------------------------------
Mount Sinai School of Medicine....................... $127,386
City University of New York (Queens)................. $5,812
State University of New York (Stony Brook)........... $3,022
------------------
Total............................................ $136,220
------------------------------------------------------------------------
Question 3. Please list all lung transplants and other high-cost
inpatient procedures performed within the NIOSH program since 2002.
Answer 3. Two FDNY responders have received lung transplants. No
other procedures of that high cost have been performed in the program,
but there have been numerous lower cost inpatient procedures for both
physical and mental health conditions.
Question 4. Please list how many patients are being treated for
what type of 9/11-related conditions within the NIOSH program now. For
each common condition, please identify the usual treatment regimen and
itemize the regimen's costs. Please explain whether there are any
specialized treatments that only the Centers for Excellence can
provide.
Answer 4. The number of responders who were treated for 9/11-
related conditions within the past year are displayed in the table
below. The number of total patients is greater than the sum of the
patients in the health condition categories because many responders
have more than one type of health condition. Similar types of health
conditions have been observed among the 2,629 patients who were treated
in the Community Program within the past year. No data are currently
available on the costs associated with these categories because that
level of detail on cost information was not required as part of the
quarterly reports. However, starting this year, the grantees have
agreed to begin developing systems to provide that type of information
by next year.
Number of Responders in Treatment from April 1, 2009 to March 31, 2010
------------------------------------------------------------------------
Health Condition Category
------------------------------------------------------------------------
Upper Airway......................................... 7,201
Lower Airway......................................... 6,592
Gastrointestinal..................................... 6,258
Musculoskeletal...................................... 1,009
Mental Health........................................ 4,601
------------------
Total Patients................................... 13,260
------------------------------------------------------------------------
The special aspect of the Centers of Excellence is that they have a
unique group of doctors who have gained a tremendous amount of
experience by serving a group of patients who had an unprecedented
exposure. The doctors understand the needs and concerns of this group
and are able to work collaboratively in teams to provide more
comprehensive services, which increases the likelihood of improving the
health of responders because they know what to do and what not to do.
Below is a list of the main features of Centers of Excellence.
Utilize an integrated, centralized-provider approach
instead of a multiple, separate-provider approach to create a
comprehensive suite of health services to an assembled cohort of
responders.
Conduct specialized physical and mental health assessments
designed to identify acute and emergent morbidities associated with the
unprecedented exposure from the WTC 9/11 attack.
Use scientifically guided treatment approaches to address
the complex synergy between physical and mental health diseases that
are exhibited by WTC responders and others affected by the 9/11
attacks.
Maintain electronic linkage with a Data Center to enable a
systematic collection of high-quality data for disease tracking and
surveillance system, analyzing and interpreting the findings, and
integrating the information into the monitoring and treatment program
activities.
Communicate with patients in numerous languages.
Assist with workers' compensation, insurance, pension and
disability claims.
senator dodd
Question 1. How many residents of CT are participating in the WTC
National Responder Health Program to monitor and treat responders
outside of the NYC metropolitan area? Can you provide the committee
with State-by-State data of participants?
Answer 1. As of June 2010, out of over 4,000 responders who are
enrolled in the National Program, 3,279 are currently participating and
the distribution of these responders by State is given in Attachment 9.
There are 40 responders from Connecticut who are participating.
Question 2. How many participants in the WTC Response Program are
children?
Answer 2. No children are enrolled in the WTC Responder Program, 53
are enrolled in the WTC Community Program, and nearly 3,000 children
and adolescents participated in the baseline survey of the WTC Health
Registry.
Question 3. It is my understanding that there are very small
numbers of children receiving treatment or monitoring the national
program or at the Centers of Excellence in New York. Why is that? What
is being done to track longitudinally the physical, and in particular
the mental health of children who were at Ground Zero or affected by
the loss of a loved one because of 9/11? Why has so little research
been done on children?
Answer 3. In an effort to promote the pediatric services offered at
the WTC Environmental Health Center (EHC) in New York City (the lead
Center in the Community Program), the WTC Health Registry has sent
information about these services to all of its enrollees. In addition,
the WTC EHC and the NYC Department of Health and Mental Hygiene
recently sent information about how to get care for
9/11-related pediatric care to more than 15,000 downtown parents. The
WTC EHC provides possible reasons (see below) to explain why so few
parents of WTC-exposed children have enrolled them in 9/11-specific
health care program of the WTC EHC, despite extensive outreach efforts.
The WTC EHC is the only program that is able to treat
children affected by the collapse of the World Trade Center towers. The
six Centers of Excellence in New York (Fire Department of New York,
Mount Sinai School of Medicine, State University of New York at Stony
Brook, City University of New York at Queens, New York University at
Bellevue, and University of Medicine and Dentistry of New Jersey) and
the National Program focus on adult rescue workers and responders and
were developed from occupational clinics for adults.
Parents with private health insurance may prefer to
initiate or continue their children's care with a community
pediatrician. It may be that children eligible and in need of WTC EHC
services are far more likely to be insured than adults would be. Having
insurance means that the child is likely to be under the continuing
care of a local pediatric provider--be that a pediatrician, child
health clinic, school health clinic, or a community health center. Many
of these pediatric providers may not recognize the presence of a WTC-
related illness in their patients. As such, the provider does not see
the benefit of referring the child to the WTC EHC.
In the months and years following 9/11, many families
moved out of Lower Manhattan. Children in schools may have transferred
or graduated. Identifying and locating these children is challenging.
The World Trade Center Health Registry enrolled nearly 3,000
children and adolescents under the age 18 in its 2003-4 baseline
survey. Findings from the survey were reported in the following
publication: Thomas PA, Brackbill R, Thalji L, DiGrande L, Campolucci
S, et al., Respiratory and Other Health Effects Reported in Children
Exposed to the World Trade Center Disaster of 11 September 2001.
Environ Health Perspectives 2008; 116:10. The investigators reported
that half (53 percent) of the children had at least one new or worsened
respiratory symptom at some time after 9/11, including shortness of
breath, cough, sinus problems, throat irritation, or wheezing (5.7
percent has new asthma diagnoses). Additionally, eye irritation or eye
injury on 9/11 was reported in 22 percent of children, and injuries
(sprains, lacerations, burns, broken bones, or concussions) were
reported for 3 percent. In 2008 the Registry completed its second
survey of the physical and mental health conditions among 2,000
children and adolescents who remained under age 18; analysis is
currently underway. The Registry plans a third survey of children and
adolescents in 2011.
There are several barriers to conducting research among children,
including:
In order to do research on children, parental consent
would have to be granted. Parents want to protect their children from
further harm by excluding them from research studies. Parents want
their children to move past 9/11.
Parents believe their children are healthy and therefore
there is no reason for them to participate in studies.
Several schools refused to participate in the study, not
wanting to perpetuate the focus of 9/11.
senator casey
Question. How have the 9/11 World Trade Center programs in
existence helped to track, and provide care for, children and youth who
were affected that day? What sort of long-term commitment needs to be
made to understand how children and youth have been impacted; how do
the 9/11 programs discussed today help to do that?
Answer. The WTC Environmental Health Center (EHC) in the Community
Program has a pediatric component dedicated to the assessment and
treatment of WTC-related conditions in children and adolescents.
Children who enroll in the EHC program enter it as a treatment patient.
That is, the child has a WTC-related medical, developmental, and/or
mental health problem requiring treatment. All new pediatric patients
undergo an initial medical and mental health screening, which is
different from the adult program because it is enhanced to include
pediatric needs. The EHC offers a wide range of pediatric services
including assessment and care by a pediatrician with WTC expertise, a
pediatric pulmonologist, or a developmental pediatrician. In addition,
children can undergo psychotherapy or psychopharmacologic evaluation
and treatment, as needed, with pediatric psychologists or
psychiatrists. The recruitment of specialists with these skills who are
able to work together in a coordinated manner is a major advantage to
treatment. The EHC also offers art therapy and child life services to
pediatric patients.
Because there were so many unknowns in the pediatric population,
the EHC expanded their inclusion criteria to include children whose
mothers were pregnant during the above-referenced time period. Also
included are children of sickened responders/rescue workers and/or
children who lost a parent, both parents, or other custodial care taker
on 9/11. Although the WTC EHC offers a comprehensive program that
includes medical treatment, mental health and developmental treatment
programs, there has been a low response to date. However, as news of
the program spreads and local pediatricians gain trust in the program,
it is anticipated that the program will continue to grow.
The WTC Health Registry does not provide direct healthcare
services, but the Registry does the following activities related to
children: (1) routinely surveys the health of children and adolescents
enrolled in the Registry to determine if changes in their health may be
attributable to 9/11; (2) disseminates its health findings and
recommendations to enrollees, and to the public and policymakers; (3)
informs enrollees of 9/11-related services, resources and health
promotion programs; (4) develops and provides data resources for, and
responds to inquiries from, enrollees and the public; and (5) developed
and disseminated Clinical Guidelines for Children and Adolescents
Exposed to the World Trade Center Disaster to physicians and parents in
New York City and to college health centers throughout the Northeast.
senator franken
Question. Dr. Howard, in your testimony, you discuss the mental
health needs of survivors of the 9/11 tragedy, noting that the effects
can linger for years. What type of mental health infrastructure do we
need to have in place to respond appropriately to the acute and long-
term effects of such events?
Answer. CDC/NIOSH is committed to providing programs and services
to help meet the on-going and long-term health needs of those directly
exposed to smoke, dust, debris and psychological trauma in the
September 11, 2001 WTC attacks. NIOSH currently addresses the
psychological trauma and mental health needs of program participants
via the WTC Health Program, NYC Police Foundation's Project COPE and
the Police Organization Provided Peer Assistance (POPPA).
The WTC Program provides monitoring and treatment for both
physical and mental health conditions attributed to WTC exposures and
embraces a comprehensive model to address the issues that influence
long-term recovery of those affected by this disaster. The WTC Clinical
Centers work to identify program participants who are suspected of
having mental health conditions related to WTC exposures and intervene
as early as possible to minimize adverse health impacts over time.
Program participants complete standardized mental health symptom
surveys as part of their (annual) medical monitoring exam process. The
surveys are scored and reviewed by health care staff and used to guide
decisions about further mental health evaluation or referral for mental
health treatment services. A program participant may also be referred
for mental health treatment services as part of the treatment program,
should such health complaints or requests be presented to the program
provider (physician, nurse or social worker). The WTC Program gathers
information to describe the rates and trends of conditions experienced
by program participants. Analysis of individual case reports, data from
monitoring programs and the WTC Health Registry report that certain
mental health conditions are cited consistently: anxiety, depression or
post-traumatic stress disorder (PTSD).
The NYC Police Foundation's Project COPE and the Police
Organization Provided Peer Assistance (POPPA) also provide mental
health services, such as counseling and support groups, to the police
responder population.
NIOSH and CDC recognize that mental health conditions can be
persistent in a small percentage of the WTC Health Program cohort, and
may require long-term monitoring and treatment.
list of attachments
1. Request for Applications for the World Trade Center Responder
Health Consortium in fiscal year 2004
2. Terms and Conditions for procedures in the first-year awards for
six Clinical Centers and two Data Centers
3. Additional Terms and Conditions that established Quarterly
Reporting
4. Quarterly Monitoring Report
5. Quarterly Treatment Report
6. Award documents for all current components of the WTC Program:
NYC Responders, National Responders, NYC Community members, and WTC
Health Registry
7. Contacts for each cooperative agreement, grant, and contract
that make up the WTC Program
8. Table of funds spent by fiscal year for each cooperative
agreement, grant, and contract that make up the WTC Program
9. Table of participants by State in the National Responder Health
Program
______
Attachments \1\
---------------------------------------------------------------------------
\1\ [Editor's Note: Due to the high cost of printing, previously
published materials will not be reprinted in the hearing record. Please
refer to the Web site provided to access those documents.]
---------------------------------------------------------------------------
Attachment 1.--Request for Applications for the World Trade Center
Responder Health Consortium in fiscal year 2004 [See: http://
grants.nih.gov/grants/rfa-files/RFA-OH-04-004.html.]
Attachment 2.--Cooperative Agreement Terms and Conditions of Award
for 2004 to 2009
The cooperative agreement is an award instrument establishing an
``assistance'' relationship (in contrast to an ``acquisition''
relationship) between NIOSH and a recipient, in which substantial NIOSH
scientific and/or programmatic involvement with the recipient is
anticipated during performance of the activity. The purpose of NIOSH
involvement is to support and/or stimulate the recipient's activity by
acting as a ``partner'', while avoiding a dominant role, direction, or
prime responsibility. The terms and conditions below, elaborate on
these actions and responsibilities, and the awardee agrees to these
collaborative actions with the NIOSH Scientific Program Administrator
to achieve the project objectives. It is anticipated that these terms
and conditions will enhance the relationship between the NIOSH staff
and the principal investigator(s), and will facilitate the successful
conduct and completion of the study. These agreements will be in
addition to, and not in lieu of, the relevant NIOSH procedures for
grants administration.
1. The awardee(s) will have lead responsibilities in all aspects of
the study, including any modification of study design, conduct of the
study, quality control, data analysis and interpretation, preparation
of publications, and collaboration with other investigators, unless
otherwise provided for in these terms or by action of the Steering
Committee.
2. The NIOSH Scientific Program Administrator will serve on the
Steering Committee as non-voting members; he/she or other NIOSH
scientists may serve on other study committees, when appropriate, but
if other NIOSH scientists are identified, they will also be non-voting
members. The NIOSH Scientific Program Administrator (and other NIOSH
scientists) may work with awardees on issues coming before the Steering
Committee and, as appropriate, other committees, e.g., recruitment,
intervention, follow-up, quality control, adherence to protocol,
assessment of problems affecting the study and possible changes in
protocol, interim data and safety monitoring, final data analysis and
interpretation, preparation of publications, and development of
solutions to major problems such as insufficient participant
enrollment.
3. Awardee(s) agree to the governance of the study through a
Steering Committee. Steering Committee voting membership shall consist
of the Principal Investigators (i.e., cooperative agreement awardees),
and the Chairperson. Meetings of the Steering Committee will ordinarily
be held by telephone conference call or in the metropolitan New York
Area.
4. Awardees will retain custody of and have primary rights to their
data consistent with current HHS, PHS, and NIOSH policies. The
collaborative protocol and governance policies will call for the
continued submission of data centrally to the coordinating centers for
collaborative databases, one for the firefighter and one for the other
responder cohort; the submittal of copies of the collaborative datasets
to each principal investigator upon completion of the study; procedures
for data analysis, reporting and publication; and procedures to protect
and ensure the privacy of medical and genetic data and records of
individuals. The NIOSH Scientific Program Administrator on behalf of
NIOSH, will have the same access, privileges and responsibilities
regarding the collaborative data as the other members of the Steering
Committee.
5. Awardees are encouraged to publish and to publicly release and
disseminate results, data and other products of the study, concordant
with study protocols and governance, and the approved plan for making
data and materials available to the scientific community and to NIOSH.
6. The NIOSH reserves the right to terminate or curtail the study
(or an individual award) in the event of (a) failure to develop or
implement a mutually agreeable collaborative protocol, (b) substantial
shortfall in participant recruitment, follow-up, data reporting, or
quality control, (c) major breach of the protocol or substantive
changes in the agreed-upon protocol with which NIOSH cannot concur, or
(d) human subject ethical issues that may dictate a premature
termination.
7. Payment for health screenings will be based on an email from the
Data and Coordinating Center, DCC approving the submitted data. These
emails must be retained for the annual audit of the health screenings
charges and must be maintained for the annual audit review. No other
documentation shall be required to justify the health screening
charges.
8. These special terms of award are in addition to and not in lieu
of otherwise applicable OMB administrative guidelines, HHS Grant
Administration Regulations at 45 CFR part 74 and 92, and other HHS,
PHS, CDC and NIOSH grant administration policy statements.
Attachment 3.--Additional Cooperative Agreement Terms and Conditions of
Award for 2007 to 2009
Additionally, the Reporting Requirements have been augmented as
follows:
Principal investigators for this program are required to provide a
quarterly report on patient and conditions. The report shall be
submitted to the Data and Coordination Center (DCC) and the Center for
Disease Control (CDC), Grants Management Office, noted below. The
content of the report will be defined by the DCC and NIOSH no later
than close of business Tuesday, November 14, 2006. The report due dates
are as follows:
Due Date: February 1, 2007
Covering the period: October, November, and December
Due Date: May 1, 2007
Covering the period: January, February, and March
Due Date: August 1, 2007
Covering the period: April, May and June,
Due Date: November 1, 2007
Covering the period: July, August, and September
Attachment 4.--Quarterly Monitoring Report
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Attachment 5.--Quarterly Treatment Report
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
Attachment 6.--Award Documents for All Current Components of the WTC
Program: NYC Responders, National Responders, NYC Community Members,
and WTC Health Registry \2\
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\2\ [Editor's Note: Due to the volume of documents submitted with
this attachment and the high cost of printing these documents were not
printed in the record, but are maintained in the committee files.]
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Attachment 7.--Contacts for the Cooperative Agreements, Grant, and
Contract That Make Up the WTC Program
Senator Enzi: 1-e, Grantee/Contract Contact Information
----------------------------------------------------------------------------------------------------------------
Principal
Grantee/Contractor Program Address Investigator/ Telephone
Contact
----------------------------------------------------------------------------------------------------------------
Fire Dept. City of New York..... Clinic Center...... Office of Medical Kelly, Kerry J.
Affairs, Rm. 2-E4, [email protected] 718-999-1933.
9 Metrotech v.
Center, Brooklyn,
NY 11201.
Fire Dept. City of New York..... Data Center........ Office of Medical Prezant, David J.
Affairs, Rm. 4W-1, [email protected] 718-999-2696.
9 Metrotech v.
Center, Brooklyn,
NY 11201.
Mount Sinai School of Medicine.. Clinic Center...... One Gustave L. Levy Crane, Michael
Place, Box # 1057, Michael.crane@mssm. 212-808-7625.
New York, NY 10029- edu.
6574.
Mount Sinai School of Medicine.. Data Center........ One Gustave L. Levy Landrigan, Philip,
Place, Box # 1057, Phil.landrigan@mssm 212-824-7018.
New York, NY 10029- .edu.
6574.
Research Foundation at SUNY, Clinic Center...... W. 5510 Melville Luft, Benjamin J.
Stony Brook. Library, Stony [email protected] 631-444-8219.
Brook, NY 11794- sb.edu.
3362.
UMDNJ--Robert Wood Johnson Clinic Center...... 170 Frelinghuysen Udasin, Iris G. 732-445-0123
Medical School. Road, Room 115, [email protected] x 612.
Piscataway, NJ s.edu.
08854.
Queens College of CUNY.......... Clinic Center...... 230 W. 41st Street, Markowitz, Steven
New, York 10036. B. 718-670-4184.
[email protected].
edu.
New York University Medical Clinic Center...... 550 First Ave., New Harrison, Denise
Center, Bellevue. York, NY 10016. Joy 212-562-4572.
Denise.harrison@nyu
mc.org.
Logistics Health Incorporated National responder 328 Front Street Sarah Parins 866-284-8788
(LHI). Contract. South, La Crosse, sparins@logisticshe x 1116.
WI 54601. alth.com.
POPPA, INC...................... Police Resiliency 26 Broadway, Rm. Genet, William W.
Support Program. 1640, New York, NY [email protected].... 212-298-9111.
10004.
NY City Police FDN, INC......... Project COPE....... 345 Park Ave., New Roberts, Gregg 212-751-8170
York, NY 10154. groberts@nycpolicef x-11.
oundation.org.
NYC Dept of Health and Mental Registry........... 125 Worth Street, Farfel, Mark R.
Hygiene. RM 623 CNR, New [email protected]. 212-442-2401
York, NY 10013. gov.
NYC Health and Hospitals Corp... Community Program.. 125 Worth Street, Reibman, Joan
Room 514, New Joan.reibman@nyumc. 212-263-6479.
York, NY 10013. org.
----------------------------------------------------------------------------------------------------------------
Attachment 8.--Table of funds spent by fiscal year for each cooperative
agreement, grant, and contract that make up the WTC Program
WTC Awards & Program Operations
----------------------------------------------------------------------------------------------------------------
Grantee Fiscal Year Obligated Expenditures
----------------------------------------------------------------------------------------------------------------
Fire Department of NYC (CC)
FY04................... $3,574,116 $3,574,116
FY05................... 3,591,898 3,591,898
FY06................... 5,110,214 5,110,214
FY07................... 3,629,079 3,629,079
FY08................... 5,631,557 5,631,557
FY09................... 39,616,678 25,513,854
FY10................... 29,436,738 -
----------------------------------------------------------------------------------------------------------------
Total............................ $90,590,280 $47,050,718
----------------------------------------------------------------------------------------------------------------
Fire Department of NYC (DCC)
FY04................... $1,229,874 $1,229,874
FY05................... 1,133,923 1,133,923
FY06................... 1,165,716 1,165,716
FY07................... 14,232,731 14,232,731
FY09................... 4,851,185 1,981,119
FY10................... 3,313,199
----------------------------------------------------------------------------------------------------------------
Total............................ $25,926,628 $19,743,363
----------------------------------------------------------------------------------------------------------------
Mount Sinai School of Medicine (CC)
FY04................... $5,225,000 $5,225,000
FY05................... 4,924,647 4,924,647
FY06................... 6,001,477 6,001,477
FY07................... 22,256,212 22,256,212
FY08................... 24,000,000 24,000,000
FY09................... 40,494,173 22,664,296
FY10................... 30,608,606
----------------------------------------------------------------------------------------------------------------
Total............................ $133,510,115 $85,071,632
----------------------------------------------------------------------------------------------------------------
Mount Sinai School of Medicine (DCC)
FY04................... $3,525,414 $3,525,414
FY05................... 3,778,242 3,778,242
FY06................... 3,923,973 3,923,973
FY07................... 3,974,515 3,974,515
FY08................... 6,099,937 6,099,937
FY09................... 5,100,000 3,067,675
FY10................... 6,850,861
----------------------------------------------------------------------------------------------------------------
Total............................ $33,252,942 $24,369,756
----------------------------------------------------------------------------------------------------------------
Research Foundation of Stony Brook
FY04................... $1,300,000 $1,300,000
FY05................... 1,200,001 1,200,001
FY06................... 1,200,000 1,200,000
FY07................... 3,720,794 3,720,794
FY08................... 11,421,282 11,421,282
FY09................... 6,744,826 2,980,323
FY10................... 11,806,362
----------------------------------------------------------------------------------------------------------------
Total............................ $37,393,265 $21,822,400
----------------------------------------------------------------------------------------------------------------
UMDNJ--Robert Wood Johnson Med.
School
FY04................... $422,125 $422,125
FY05................... 383,250 383,250
FY06................... 383,250 383,250
FY07................... 1,872,807 1,872,807
FY08................... 2,960,987 2,960,987
FY09................... 2,326,807 1,744,029
FY10................... 3,146,697
----------------------------------------------------------------------------------------------------------------
Total............................ $11,495,923 $7,766,448
----------------------------------------------------------------------------------------------------------------
Queens College of City University of
NY
FY04................... $716,914 $716,914
FY05................... 621,404 621,404
FY06................... 621,144 621,144
FY07................... 1,714,239 1,714,239
FY08................... 2,336,371 2,336,371
FY09................... 2,006,172 699,217
FY10................... 2,672,346
----------------------------------------------------------------------------------------------------------------
Total............................ $10,688,590 $6,709,289
----------------------------------------------------------------------------------------------------------------
NYU School of Medicine, Bellevue
FY04................... $762,409 $762,409
FY05................... 706,355 706,355
FY06................... 572,855 572,855
FY07................... 1,295,337 1,295,337
FY08................... 775,715 775,715
FY09................... 1,385,008 370,595
FY10................... 2,010,394
----------------------------------------------------------------------------------------------------------------
Total............................ $7,508,073 $4,483,266
----------------------------------------------------------------------------------------------------------------
Logisitics Health Incorporated (LHI)
FY08................... $11,000,000 $9,434,495
FY10................... 5,200,000
----------------------------------------------------------------------------------------------------------------
Total............................ $16,200,000 $9,434,495
----------------------------------------------------------------------------------------------------------------
Project COPE/NYC Police Foundation
FY06................... $1,000,000 $1,000,000
FY07................... 1,000,000 1,000,000
FY08................... 1,000,000 1,000,000
FY09................... 792,000 467,513
FY10................... 934,000
----------------------------------------------------------------------------------------------------------------
Total............................ $4,726,000 $3,467,513
----------------------------------------------------------------------------------------------------------------
POPPA/Police Resiliency Maintenance
Program
FY06................... $500,000 $500,000
FY07................... 500,000 500,000
FY08................... 500,000 500,000
FY09................... 375,000 148,006
FY10................... 556,653
----------------------------------------------------------------------------------------------------------------
Total............................ $2,431,653 $1,648,006
----------------------------------------------------------------------------------------------------------------
NYC Health & Hospitals Corporation
FY08................... $10,000,000 $2,829,628
FY09................... 10,000,000
FY10................... 10,000,000
----------------------------------------------------------------------------------------------------------------
Total............................ $30,000,000 $2,829,628
----------------------------------------------------------------------------------------------------------------
WTC Health Registry
FY06................... $1,956,025 $1,956,025
FY07................... 4,575,896 4,575,896
FY08................... 2,999,792 2,285,328
FY09................... 3,437,594 1,891,230
FY10................... 3,437,594
----------------------------------------------------------------------------------------------------------------
Total............................ $16,406,901 $10,708,479
----------------------------------------------------------------------------------------------------------------
NYS Dept. of Health Fatality
Investigation
FY06................... $165,023 $165,023
FY07................... 197,414 197,414
FY08................... 201,634 201,634
FY09................... 121,827 3,603
----------------------------------------------------------------------------------------------------------------
Total............................ $685,898 $567,674
----------------------------------------------------------------------------------------------------------------
(New) National Responder Contract
FY10................... $10,000,000
----------------------------------------------------------------------------------------------------------------
Total............................ $10,000,000 $-
----------------------------------------------------------------------------------------------------------------
Assoc. Occupational & Environmental
Clinics
FY07................... $49,549 $49,549
----------------------------------------------------------------------------------------------------------------
Total............................ $49,549 $49,549
----------------------------------------------------------------------------------------------------------------
Mount Sinai Contract: 2002 & 2003*
$15,861,734 $15,861,734
----------------------------------------------------------------------------------------------------------------
Total............................ $15,861,734 $15,861,734
----------------------------------------------------------------------------------------------------------------
TOTAL Awards $446,727,551 $261,583,950
Program Costs 14,013,420
Unobligated Funds 15,064,854
----------------------------------------------------------------------------------------------------------------
Grand Total...................... All Years.............. $475,805,825 $261,583,950
----------------------------------------------------------------------------------------------------------------
* For Health screening of WTC responders before the current monitoring and treatment program.
attachment 9.--table of participants by state in the national responder
health program
WTC National Responder Locations
------------------------------------------------------------------------
State Number
------------------------------------------------------------------------
Alabama.................................................... 26
Alaska..................................................... 19
Arizona.................................................... 56
Arkansas................................................... 17
California................................................. 226
Colorado................................................... 50
Connecticut................................................ 40
Delaware................................................... 11
Florida.................................................... 604
Georgia.................................................... 91
Hawaii..................................................... 11
Idaho...................................................... 7
Illinois................................................... 98
Indiana.................................................... 39
Iowa....................................................... 12
Kansas..................................................... 13
Kentucky................................................... 20
Louisiana.................................................. 13
Maine...................................................... 16
Maryland................................................... 84
Massachusetts.............................................. 145
Michigan................................................... 33
Minnesota.................................................. 21
Mississippi................................................ 9
Missouri................................................... 31
Montana.................................................... 8
Nebraska................................................... 18
Nevada..................................................... 32
New Hampshire.............................................. 25
New Jersey................................................. 38
New Mexico................................................. 30
New York................................................... 447
North Carolina............................................. 154
North Dakota............................................... 4
Ohio....................................................... 106
Oklahoma................................................... 13
Oregon..................................................... 31
Pennsylvania............................................... 155
Rhode Island............................................... 27
South Carolina............................................. 64
South Dakota............................................... 5
Tennessee.................................................. 34
Texas...................................................... 109
Utah....................................................... 20
Vermont.................................................... 12
Virginia................................................... 121
Washington................................................. 48
West Virginia.............................................. 14
Wisconsin.................................................. 21
Wyoming.................................................... 3
Armed Forces Europe........................................ 2
British Columbia........................................... 1
District of Columbia....................................... 15
New Foundland.............................................. 1
Ontario.................................................... 2
Puerto Rico................................................ 19
Quebec..................................................... 2
Virgin Islands............................................. 6
------------------------------------------------------------------------
Total.................................................. 3,279
------------------------------------------------------------------------
Response to Questions of Senator Dodd, Senator Casey,
and Senator Franken by Jim Melius, M.D., DrPh
senator dodd
Question 1. Do you believe residents should be included in any
health program authorized by Congress to treat individuals and families
suffering physical or mental health effects of 9/11?
Answer 1. Yes, people living, working, and going to school in the
area around the World Trade Center were exposed to the same WTC dust
and smoke as the rescue, recovery, and cleanup workers at the WTC site.
Some of these residents, workers, and students had very intense
exposures to the so-called dust cloud at the time when the buildings
collapsed. Others spent weeks and months in workplaces or residents
that were never properly cleaned and, as a result of this, were exposed
to significant amounts of dust. Maintenance workers in downtown
buildings often had to try to clean these buildings without proper
respiratory protection and were often exposed later when doing
maintenance work in areas of their buildings that still hadn't been
cleaned even many months later.
In general, studies have found a higher rate of illnesses in these
residents, workers, and students similar to those found in the rescue
and recovery workers. These illnesses include asthma and other
respiratory diseases. Acute symptoms such as eye irritation, cough, and
other respiratory symptoms were reported to be significantly elevated
in these residents in the time period immediately after the attack.
Later studies conducted by the NYC Department of Health and by Bellevue
Medical Center staff reported on many downtown residents (including
children) and workers with serious respiratory disease including asthma
as a result of their WTC exposures. Studies by the NYC Department of
Health and other academic institutions have also documented a high rate
of Post Traumatic Stress Disorder (PTSD) among downtown residents after
9/11. For many of these people, these symptoms are chronic and require
intense medical treatment.
Question 2. According to the 2009 WTC Medical Working Group of NYC
Annual Report on 9/11 Health, ``Few studies addressed the impact of WTC
exposure on child and adolescent health, especially physical health.''
Why is that?
Answer 2. There are several reasons why there are few studies
available addressing the effects of WTC exposure on child and
adolescent health. Most of the early studies focused on the health of
the rescue and recovery workers who, in general, had the highest
exposures to the WTC dust and smoke and thus very high rates of
respiratory disease and other illness. More scientific effort has
recently shifted to focus on the community near the World Trade Center
including children and adolescents. The WTC Registry operated by the
New York City Department of Health has reported on their initial survey
results on children and is currently planning a follow-up survey. The
Bellevue Program for WTC residents and workers has also expanded their
services to include pediatric services.
There are also difficulties conducting research on children and
adolescents. Many of the children exposed in 2001 have now moved to
other areas to attend college and for other reasons. This makes it more
difficult to track them and enroll them in studies. There are also
additional ethical safeguards in place for research involving children
which adds to the time required to conduct studies of children and
adolescents. Despite these difficulties, I expect that more studies on
children and adolescents will be conducted over the next few years.
senator casey
Question 1. For those who rely on 9/11 World Trade Center health
programs, how would the legislation introduced by Senator Gillibrand
help to guarantee that they are taken care of not just today but
tomorrow? Has our country made a long-term commitment to helping the
people served by these programs? What are the benefits of funding these
programs not just for 1 year but for several years at a time?
Answer 1. Senator Gillibrand's legislation would provide stable
long-term medical care for people who have become ill as a result of
their exposures following the WTC terrorist attacks in 2001. Many of
them have developed serious chronic diseases including respiratory
illnesses and Post Traumatic Stress Disorder (PTSD) which will require
many years of monitoring and treatment. In addition, we do not know
what other illnesses such as cancer may emerge among this population.
This legislation will ensure that they receive long-term high quality
medical care that will help to reduce the long-term effects of these
illnesses on them and their families.
Immediately after September 11, President Bush and Congress stated
their commitment to help everyone harmed by this terrorist attack.
Unfortunately, the funding for the WTC medical programs has been
intermittent. Often it was only included in emergency appropriations.
While long-term support for the program has been stated, supporters of
the program have struggled from year to year to obtain the necessary
funding.
A long-term funding commitment would ensure that the programs can
provide high quality medical care to these patients over the longer
term. The institutions will be able to commit to hiring the medical
staff needed for the programs. This has been difficult with just year
to year budgeting. Administration functions will also be improved with
more stable funding and staffing. The legislation also includes
provisions for improving the administrative efficiency of the program
through better funding mechanisms for the medical care and improved
ability to utilize long-term contracts for pharmaceutical coverage and
other medical expenses. Most importantly, the patients being cared for
in this program will be assured that their medical care will continue
to be available.
Question 2. From a health care systems perspective, in your opinion
does investing in the World Trade Center health programs--which as many
of the panelists have testified are tailored to meet the needs of those
harmed by 9/11--offer a better return on investment than just providing
funding to individuals directly to seek out care from providers who are
not specialists in this area? If so, how?
Answer 2. My initial training and experience was in primary medical
care, and I understand the benefits of using primary care practitioners
for general medical care. However, this is a special situation where
much of the medical care for these WTC patients is specialized. More
importantly, their illnesses are not routine. Their illnesses do not
always respond to medical treatment in the expected manner, and we
don't know what future illnesses might occur among these patients. For
these reasons, there is considerable benefit to provide their medical
care by a more concentrated group of providers who focus on just these
WTC patients and thus have more experience in the diagnosis,
management, and treatment of these patients.
While there may need to be some adjustments for patients living in
other parts of the country, I believe that limiting most medical care
to these Centers of Excellence will provide higher quality medical care
that will benefit these patients. We also know from experience that
most primary care physicians are uncomfortable treating these patients
and often have difficulty when trying to do so. Many of the patients
recently enrolling in the program do so because their health has
continued to get worse while under the care of their primary care
provider. This is not necessarily the fault of the provider but rather
a reflection of the difficulty of diagnosing and treating these
patients.
Question 3. Can you comment on how many people who live outside of
New York City are being helped by the 9/11 World Trade Center health
programs?
Answer 3. Currently, over 4,000 rescue, recovery, and clean-up
workers living outside of the NYC area have received monitoring exams,
and approximately 1,000 have received medical treatment through this
program including over 675 in the last year. The program for rescue and
recovery workers living outside of the NYC area was slow in getting
implemented. Now that a more comprehensive program is available, I
expect that the number of people obtaining care through this program to
continue to increase especially as many of the older patients retire
and move out of the New York City area.
senator franken
Question. Would it be correct to summarize Senator Gillibrand's
bill, S. 1334, as providing for the extension and coordination of
existing programs to ensure they are administered most efficiently and
effectively? Would it also be correct to say that the legislation
doesn't create any new categories of beneficiaries and that it has
adequate safeguards to prevent fraud and abuse?
Answer. Yes. In establishing the medical programs as long-term
monitoring and treatment programs, the legislation also helps to
improve their administrative efficiency. The program administrator
(NIOSH) will have to establish standardized procedures for enrollment
and for approval of treatment for WTC-related medical conditions. There
will also be better criteria and procedures for adding additional
providers to the program. Better quality assurance programs will be
required, and there will be better oversight of the medical programs.
Long term funding will also enable the Federal Government and the
Centers of Excellence to establish longer term contracts for
pharmaceuticals and other medical services for the programs. These
longer term contracts should be more cost-effective.
The legislation does not create any new categories of
beneficiaries. The enrollment criteria and treatment criteria mirror
those currently in place for the responder and community medical
programs. Under their current funding agreements with NIOSH, the
Centers of Excellence could expand the list of covered conditions. The
legislation restricts changes to enrollment criteria to require that
the program administrator approve all changes and also limits additions
to the list of covered conditions.
The legislation also includes provisions to prevent fraud and
abuse. All of the Centers of Excellence are required to have in place
internal safeguards against fraud and abuse and must institute quality
assurance programs. The Centers must also utilize treatment protocols
developed for the program, and only treatments that are deemed
medically necessary can be reimbursed. These and other provisions
should safeguard against fraud and abuse.
Response to Questions of Senator Casey and Senator Franken
by David Prezant, M.D.
senator casey
Question. Why is it that, after 9 years, there are people who
haven't yet been given assistance?
Answer. At the FDNY program, we have offered assistance in terms of
monitoring and treatment to 100 percent of our cohort and over 95
percent have accepted it in one form or another (monitoring or
treatment or both). For a voluntary program such a high rate of service
is unheard of. The only thing that prevents continued high rates is the
uncertainty raised by year-to-year funding.
senator franken
Question 1. EMS workers are the backbone of our emergency response
system in this country. How does the Center of Excellence communicate
with health care providers to ensure that survivors are getting the
care they need?
Answer 1. Our outreach to FDNY EMS has been as successful as to
FDNY fire. The services they receive are identical. Mt. Sinai and the
national program are responsible for other EMS personnel. Our service
to them has been to publicize our results and findings and treatment
protocols so that everyone can benefit from our experience.
Question 2. Can you also please discuss whether there's a deadline
for monitoring the long-term effects of the 9/11 exposure and treatment
these workers receive--in other words, what do you think EMS workers'
health needs may be 10, 20, or even 30 years from now?
The timeline for EMS should be no different than for others with
exposure. Asthma and PTSD are early outcomes but cancer and
interstitial lung diseases like asbestosis and pneumoconiosis (from
dust) take 10 to 30 years to develop. Therefore the follow up should be
at least 30 years.
Response to Question of Senator Casey by Margrily Garcia
Question. You spoke about your experiences on 9/11--and the
challenges that you faced that day and in the months and years that
have followed. What are your greatest fears related to your health at
this point? How do the 9/11 health programs help you minimize or face
those fears?
Answer. My greatest fears related to my health at this point are
the probable and continual deterioration of my life from now on. I'm
afraid of just getting by and not improving, of having to always visit
a specialist for one medical problem or another. I fear of falling into
that small but fatal percentile where a procedure, surgery, or
prescription side effect may go wrong and make me feel or get worse.
Thus far I've had three operations to fix my pacemaker/
defibrillator which the leads came out twice within 6 months when I was
advised that it would be about 10 years for me to change my battery or
be otherwise operated on. My life depends on a battery-operated machine
inside of me that can malfunction at any time. What happens to me if I
don't reach the hospital in time?
I had the sinus operation in late February to remove nasal polyps
completely blocking my nasal airways, and was promised to feel relief
for at least 5 years only to be recently informed that I have nasal
polyps again 3 months later which means sinus congestion and horrible
constant headaches. I have to suffer with a nasty odor that exists in
my nose from the polyps if I don't rinse it and have to use a nasal
steroid (Nasonex or Flunisolide) to find temporary relief. This also
means more uncomfortable experiences at the ENT clinic where the
doctors fill my nose with bad tasting fluids (local anesthetics and
decongestants) to numb my nose and throat while they stick a tube with
a camera to see deep inside my very sensitive nose. I force myself to
go to listen to their advice to take the medicine that I need that
would avoid having another surgery. I sit there very nervous thinking
that if I sneeze while the tube is in my nose that perhaps it may
puncture something inside which is connected closely to my brain.
Every time I visit the WTC clinic and their affiliated doctors I'm
afraid of what news I will receive, but I am also relieved because if
anything is wrong I have trust that they will proceed with caution and
expertise. In assistance, I observe and try to keep track of any
changes in my body to report in case something else is wrong and we can
detect it early before it becomes too late. I wonder who lives like
this. Who worries about their lives daily like I do? I hate feeling so
tired everyday as if I were an old lady whose body is about to give
out. I'm a recently married woman who wants to have kids and form a
beautiful family. My life is crucial because I am significant and
precious and worthwhile to my family and country.
I keep my family together. I am the loving leader who my siblings
look up to and my mother depends on to help her with everything. I make
my job run smoother because I perform my job with diligence and
excellence. Something I am very proud of and yet my job is another one
of my greatest fears. I have my Family Medical Leave Act, (FMLA) form
promptly filled out yearly but that isn't enough to ease my concerns of
losing my job, never getting a promotion because of my absenteeism, or
looking for a new job because who wants to hire a sick person? Due to
my illness I sacrifice personal time or paid time off (PTO) from work
for medical appointments and when I don't have PTO available then I
don't get paid for the day which I must miss for my well-being and
therefore I miss out financially as well. This isn't fair to my
employers or me. I'm still responsible for my bills so I feel
shortchanged somehow.
Not to mention that when I first discovered that my illnesses were
WTC-related no attorneys would help me. They said I wasn't first
responders or belonged to the recovery crew that I wasn't a police
officer or firefighter and so they could not help me. I felt worthless
and alone. Sometimes I still do because I don't know how I could
survive without the help and specialized care of the WTC program. They
didn't turn me away when I called them for help and, in fact, the
doctors and staff embraced me as a patient and continues to help me get
better each day. I'm not saying that I'm cured although I wish I were
but I am truly grateful to rely on such superior care.
I used to cough consistently and roughly which caused me much
distress at work and health wise because I disturbed my co-workers with
my asthma and coughing. They thought I was contagious and I can see
their apprehension when my co-workers were near me. They wouldn't even
disguise their hostility when I first started at my current job. I was
and still am quite miserable. I was always wheezing and suffered from
chest pains, back pains and headaches. It is very difficult to
concentrate in front of a computer all day and try to control a massive
continuous headache almost every day. My eyes also hurt in conjunction
with the headaches, and allergies, and I can't stand it. I'm also seen
by a neurologist who advised me to keep a headache journal to describe
when my headaches occur, how often and how painful.
I visited the clinics and emergency rooms quite often in a year
which made my employers frown and uncomfortable. I felt ashamed of my
cough which would never go away. Today it's more manageable thanks to
the care that I receive at the WTC program at Bellevue Hospital. Life
feels more manageable but I'm not out in the clear. The WTC program
helps give me hope that there are doctors who know how to treat me and
understand my symptoms and diseases even when I don't fully understand
them, although I keep myself informed so that I can ask the right
questions for the treatment provided and alternatives available for
options. I don't know what I will ever do without the WTC program
should it ever not be available to me and thousands of others who need
this program to survive. I hope we never have to find out.
I need help to exist and I'm no longer ashamed to seek it. I am no
longer invincible and I need assistance for my body to match the
strength of my soul and spirit.
I thank you Senator Casey for your question and concerns. If I may
be of more service to you please do not hesitate to ask.
______
Letters of Support
Congress of the United States,
Washington, DC 20515-3214,
June 29, 2010.
Chairman Harkin, Ranking Member Enzi, members of the committee: I
want to thank you for holding this hearing today on S. 1334, the James
Zadroga 9/11 Health and Compensation Act, introduced by Senator
Gillibrand and Senator Schumer. I am proud to work with Senator
Gillibrand to champion the health needs of World Trade Center
responders and survivors. As the sponsor of the House counterpart, H.R.
847, I am pleased to see movement on this side of the Capitol.
On September 11, 2001, thousands of people tragically lost their
lives. Nearing 9 years later, we know that thousands more have lost
their health.
Within hours of the collapse of the World Trade Center, fire
fighters, police officers and EMTs labored alongside construction
workers, volunteers, and others without regard for their own health or
safety. All were told by the government that the ``air was safe to
breath.''
Unfortunately, we now know better. The cloud they worked in was a
poisonous cocktail of thousands of tons of coarse and fine particulate
matter, pulverized cement and glass, asbestos, lead, and other toxic
pollutants. To the mix were added 24,000 gallons of burning jet fuel
and plastics which created a dense plume of black smoke containing a
specific combination of toxins probably never seen before and hopefully
that we will never see again.
And all of this went into the mouths, throats, and lungs of tens of
thousands of first responders and survivors.
Although most of these people live in the New York/New Jersey area,
at least 10,000 people came from across the country to help in the
aftermath of the attacks. They hail from every State in the Union and
nearly every congressional district.
Now, nearly 9 years later, we continue to see the deadly effects of
those toxins. There are numerous peer-reviewed, scientific studies
showing that the exposures at Ground Zero are causing people to become
very ill. Their illnesses include respiratory and gastrointestinal
conditions such as asthma, interstitial lung disease, chronic cough and
GERD (gastroesophageal reflux disease), and mental health conditions
such as post-traumatic stress disorder.
S. 1334 helps the sick by improving medical monitoring and
treatment to WTC responders and survivors who were exposed to Ground
Zero toxins. To do this, it will build on the existing monitoring and
treatment programs by delivering expert medical care for these unique
exposures at Centers of Excellence. The bill also provides compensation
for those who suffered economic loss by reopening the September 11
Victims Compensation Fund (VCF).
Press reports this morning indicated that Senator Enzi will say
that the existing programs to help the WTC responders and survivors are
enough and that we do not need this bill.
Nothing could be further from the truth. Our bill would authorize
these programs into law and ensure that they have guaranteed funding.
The bill would eliminate gaps in coverage in the current program that
have too often resulted in 9/11 first responders and others getting
notices that their care is coming to an end, as we saw last year in New
Jersey and this year with New York City's program to provide mental
health care for those affected by the attacks.
The solutions we have offered in H.R. 847 are neither easy nor
inexpensive, but they are part of our country's moral obligation, as
the wealthiest country in the world, to care for those who respond to
an act of war. We must take care of the people who took care of us
following 9/11. It is the least we can do as a grateful nation.
Thank you.
Carolyn B. Maloney,
House of Representatives.
______
David A. Paterson, Governor,
State of New York,
Executive Chamber,
Albany, NY,
June 29, 2010.
Hon. Thomas Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions,
S-428 Dirksen,
Washington, DC 20510.
Hon. Michael B. Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions,
S-835 Hart,
Washington, DC 20510.
Dear Chairman Harkin and Ranking Member Enzi: I write to thank you
for convening a hearing to consider the James Zadroga 9/11 Health and
Compensation Act of 2009 and express my strong support for this
critical legislation. The importance of the continued monitoring and
treatment of the World Trade Center responders cannot be overstated.
This bill will guarantee a Federal commitment to funding for the long-
term health and mental health care needs that many of the affected
individuals now require.
Immediately following the attacks on our country on September 11,
2001, our Nation made a commitment to ensure that those responders from
around the country who were directly affected by the events of 9/11 get
access to the care they need, making this legislation not only a New
York priority, but a national priority. It is critical to continue the
much-needed research into World Trade Center-related illnesses.
I commend Senator Gillibrand for her determination in securing a
hearing for this crucial piece of potentially life-altering,
legislation. It is with utmost sincerity that I reiterate my support
for the James Zadroga 9/11 Health and Compensation Act of 2009.
Yours truly,
David A. Paterson.
______
The United States Conference of Mayors,
Washnigton, DC 20006,
June 28, 2010.
Hon. Tom Harkin, Chairman,
Health, Education, Labor, and Pension Committee,
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Health, Education, Labor, and Pension Committee,
U.S. Senate,
Washington, DC 20510.
Dear Mr. Chairmen: On behalf of the United States Conference of
Mayors, I am writing in support of S. 1334, James Zadroga 9/11 Health
and Compensation Act of 2009. This legislation is a critical first step
to providing long-term and sustainable funding for a permanent
monitoring and treatment system for thousands of first responders and
others who became sick and are getting sicker from exposure to toxins
released in the aftermath of the 9/11 attacks.
During our 78th Annual Meeting in Oklahoma City, the mayors of this
Nation unanimously supported a policy resolution calling for
legislation that would permanently fund a monitoring and treatment
program for Americans who can prove they were exposed to the WTC (World
Trade Center) disaster and to permanently fund WTC-related health
research to ensure appropriate use of Federal funds for monitoring and
treating WTC-exposed Americans. In addition, the mayors called for
legislation that would re-open the September 11th Victim Compensation
Fund.
We applaud Senator Gillibrand for her commitment to this issue and
believe this legislation is a necessary measure to ensure that 9/11
rescue and recovery workers who risked their lives will receive the
proper long-term medical care and support they deserve.
If you have any questions, please feel free to contact conference
staff Crystal Swann at 202-861-6707 or via email at
[email protected]. We appreciate your consideration and thank you for
your support.
Sincerely,
Tom Cochran,
CEO & Executive Director.
______
July 7, 2010.
Dear Senators: On June 29, 2010, it was my honor to travel to
Washington, DC and watch the HELP Committee hearing entitled
``Examining the Continuing Needs of Workers and Communities Affected by
9/11.'' I am a patient at the World Trade Center Environmental Health
Center at Bellevue Hospital and would like to submit my profile
(attached to this email) to be part of the record of that hearing.
I survived the attack on the World Trade Center on 9/11 and
strongly support continued funding of the Centers of Excellence which
provide medical and mental health treatment for those affected by the
9/11 attack.
I hope that, when you read my story, you will agree that all
efforts must be made to ensure that those impacted by 9/11 are
guaranteed care well into the future.
Thank you for your hard work and consideration.
Sincerely,
Susan Herr.
______
World Trade Center Environmental Health Center Patient Profile:
Susan Herr
``I can't walk and carry a balloon at the same time,'' says Susan
Herr, who survived the collapse of the World Trade Center on September
11, 2001 but who, almost 9 years later, finds it difficult to do many
of the things that most people take for granted.
Susan, a Long Island commuter, worked as a computer programmer on
the 68th floor of the south tower. She decided to evacuate not long
after the first plane hit even though building management had announced
that it was safe for workers who had been leaving to return to their
desks. The elevator got her as far down as the 43d floor, where she
entered the stairwell. ``But I had a panic attack and couldn't walk
down any further than the 19th floor so I got back into an elevator.''
Susan was descending to the lobby when United Airlines Flight #175
slammed into the building. ``At first it was impossible to get out
because of the surge of people pushing back inside who were trying to
protect themselves from the falling debris.''
Once she was able to exit onto the plaza, a policewoman instructed
Susan to run east. After cutting her leg on fallen debris, Susan headed
uptown. Two other details about her terrifying journey that morning
still stick in her mind: ``I couldn't believe it when I heard someone
say the Pentagon had been hit, and all around me people were throwing
their cell phones down on the street.''
Susan made contact with her family for the first time around 1 p.m.
when she finally arrived, covered in a light coating of dust, at her
sister-in-law's office in the Madison Square Garden building. Her
parents and her brother and sister had no idea if she was OK or not.
She found out that her brother, an off-duty NYPD cop, was trying to get
back into the city to help. ``The Long Island Railroad had stopped
running so I didn't get home until much later that evening.''
Working from home and staying in touch with a close-knit group of
colleagues helped Susan make it through the next few weeks. Although
she didn't have to return to work in Lower Manhattan for more than a
year, her nerves and recurring nightmares prevented her from sleeping
well. Her family physician prescribed sleeping pills.
Susan began to have other health problems in 2002. She learned
always to bring water or candy with her everywhere she went to soothe a
cough that just wouldn't go away. ``Any excitement or over exertion
would set it off,'' she says. Walking, even breathing, became
increasingly difficult although she never had smoked. And when her
parents decided to move, she decided she couldn't face living alone
after what she had been through, so she relocated with them to upstate
New York.
Around the time things got really bad in 2008, Susan, who now works
for the U.S. Military Academy in West Point, received a mailing from
the World Trade Center (WTC) Health Registry about the WTC
Environmental Health Center's services for people who worked or lived
in Lower Manhattan. She made an appointment.
Doctors at the WTC Environmental Health Center diagnosed Susan with
asthma and prescribed medications that have reduced the frequency of
her coughing and made it easier to breathe. But what really worries
Susan is the future. ``I'm going to be 54 soon,'' she says. ``What will
happen when I'm 64? We just don't know how being down there that day is
going to affect our health in the years to come.''
Susan feels so strongly about the importance of the health
monitoring and treatment offered by the WTC Environmental Health Center
that she's willing to make a two-hour drive each way. ``Based on what
they're seeing in other patients''--more than 4,600 Lower Manhattan
community members have sought care at the WTC Environmental Health
Center--``my doctors know what to look for in me.''
Unlike many of the patients served by the WTC Environmental Health
Center, Susan has private insurance. This means that her health care
would continue even if Federal funding for the program ends, but she
would have to rely on local providers who may not have the expertise
necessary to treat WTC-related respiratory illness or identify emerging
conditions.
That's why Susan plans to visit members of Congress with a strong,
but simple message of support for the 9/11 Health and Compensation Act:
``Even though I wasn't a first responder, I was still a victim.'' My
country let me down once by letting the World Trade Center get hit. I
hope it won't let me down again by closing the clinic.
______
Kathy GopiChan,
Ocala, Florida 34473,
July 8, 2010.
Hon. Tom Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Re: S.1334/H.R.847 ``The James Zadroga 9/11 Health & Compensation Act
of 2009''
Dear Chairman Harkin and Ranking Member Enzi: I am Kathy Gopichan
and I currently reside with my family in Florida, where I am now
working as a nurse. On 9/11, I was living in Queens with my husband and
two young children. At that time, I was working for Time Warner Cable
and attending school at Borough of Manhattan Community College (BMCC),
5 blocks North of Ground Zero. When the second plane hit, I had been
inside Fiterman Hall, a school building directly adjacent to the WTC,
for a class. As the building shook violently and the ceiling started to
collapse in on us, I ran outside. Then I saw bodies flying out of the
WTC, debris falling, people screaming and running, and choking on air
full of airplane fuel and horrible smelling smoke. I was disoriented by
the crowds, dust and smoke. I spent the next 2 hours ``in shock'' as I
tried frantically to get to my baby, who was at the babysitter's on 23d
Street.
I was so traumatized that I had to cancel my semester and was
unable to work. I was also unable to sleep, ``jumping awake'' in our
apartment which was right near LaGuardia Airport, where we heard planes
overhead around the clock. This had never been a problem before 9/11.
Soon after 9/11, I was diagnosed by a local doctor with heart
palpitations and anxiety. Although I had no previous respiratory or
other health problems, by April 2002, my health had deteriorated. I
started wheezing, which progressed to bronchitis and then pneumonia. I
have also been plagued by migraines and insomnia, eventually I was
diagnosed with sleep apnea and irregular heartbeat.
Several years ago, when my husband had been laid off, our family
moved to Florida, hoping for better work prospects. Both he and I were
able to find jobs, but I later lost mine due to too much time sick. I
was unable to use my husband's benefits because the insurance company
deemed my conditions to be pre-existing. We have been paying all
medical expenses out-of-pocket until we simply could no longer afford
to do so. It was my husband who learned about the WTC EHC from a friend
whose union held an information session. I usually spend some of the
year with my extended family in Queens, NY so I made an appointment. I
was diagnosed and am now being treated for WTC-related asthma,
headaches and PTSD. The family is considering a move back to New York,
so that I can continue to receive the right kind of care. I am trying
to visit soon for a follow-up appointment.
The treatment I received at the WTC EHC was very good. The doctors
are experts in recognizing the 9/11 health problems and knowing the
right medications for the overlap of symptoms from the type of
exposures that I had. No one else understood or connected the dots of
my health symptoms. I get care for my body and my mind. After 9/11, I
struggled for years with improper care and struggled trying to have a
decent life for myself, my husband and my children. I feel very lucky
that I FINALLY have this program.
9/11 survivors like me are asking for your help to protect the
program which enables us to get our lives back.
Gratefully,
Kathy GopiChan.
______
July 8, 2010.
Hon. Tom Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Re: S. 1334/H.R. 847 ``The James Zadroga 9/11 Health & Compensation
Act of 2009''
Dear Chairman Harkin and Ranking Member Enzi: On September 11, 2001
my daughter Alexia, who was 1\1/2\ years old, was at my mother's house
in Lower Manhattan, on Mulberry Street between Houston and Prince
Streets. At that time, my mother was my main source of childcare and
though I left for work that day, I never made it there because my
supervisor called me to tell me that I shouldn't come in to work. As
the terrible events began to unfold, a crowd had gathered at the corner
of Lafayette and Prince from where the towers could be plainly seen.
When the towers collapsed, the dust rolled into our neighborhood,
and the air reeked of fumes from the WTC fires as they burned for many,
many weeks.
Throughout the year my mother continued to be my main source of
childcare, with my daughter often spending the night at her house. We
had been told that the whole area was safe. Within a few months of 9/
11, however, Alexia started to develop symptoms of asthma for the first
time. It seemed that every time she had a cold, it would turn into
difficulty breathing. The first few times the doctors said that she was
too young for them to diagnose her with asthma. By the time she was 3
years old, she was given that diagnosis and we ended up at the
pediatrician's office every few months because she was having
difficulty breathing.
Alexia started Pre-K at 4 years old and unfortunately missed many
weeks of school either because she'd had an asthma attack or because
the cold weather put her at risk for one. At that time, I got a call
from the school district--the staffer said she was very concerned about
Alexia's attendance and then suggested I take her out of school and not
re-enroll her until she was 6 years old, and legally required to be in
school. I was horrified at this suggestion, Alexia had missed a lot of
school but she had also made important strides, had friends and loved
school. I didn't take her suggestion. Alexia struggled through although
she continued to miss school.
The worst crisis occurred when Alexia was in the first grade--she
was hospitalized for an entire week with asthma and pneumonia. It was
terrifying. Afterwards she was put on Singulair year-round. Other
parents I was friendly with expressed concern that they thought
Singulair was only a seasonal drug for allergies but when I raised this
with the pediatrician, my concerns were brushed aside. The doctor
described it as ``a great pill that had hardly any side effects.''
A year and a half later, the Singulair suddenly stopped working,
and Alexia had several severe bouts of asthma. At the same time she was
having nightmares and although I never made the connection at the time,
when I was researching Singular online later, I found out that other
parents were reporting nightmares, depression and suicidal behavior
while their children were taking Singulair. I got Alexia off the
medication and we struggled with her asthma day by day. We were once
again in and out of the offices of overbooked pediatricians who had
little time to do more than triage.
I knew that my child's troubles began after 9/11, so when I heard
about the Bellevue WTC Pediatric Program, I brought Alexia in. It was
such a life-saver. Finally we had a doctor someone who thoroughly
examined Alexia, and understood the origins of her asthma. And I found
out that the drug Prednisone was not supposed to be given more than a
couple of times a year. She had gotten it more than a couple of times
just in the past few months. Now Alexia has ongoing care from doctors
familiar with her condition and has preventive medicine which keeps her
healthy and doesn't cause side-effects.
I urge you to do everything in your power to preserve this
essential program for my child and for so many children who, like her,
have experienced serious health problems from breathing the toxic 9/11
dust and smoke.
Thank you for your consideration.
Sincerely,
Maria Muentes,
New York City.
______
July 9, 2010.
Hon. Tom Harkin,
731 Hart Senate Office Building,
Washington, DC 20510.
Hon. Mike Enzi,
379A Russell Senate Office Building,
Washington, DC 20510.
Dear Chairman Harkin and Ranking Member Enzi: My name is Lillian
Bermudez. I am a Lower East Side resident and am now a senior police
administrative aide with the New York Police Department. I have two
children who developed chronic respiratory illnesses as a result of the
9/11 disaster.
On 9/11/01 we were living at 296 Delancey Street (where we still
reside) which is in Lower Manhattan near the Williamsburg Bridge. My
son, who was 12 years old on 9/11, had no prior respiratory problems.
In October 2001, he had been home from school for 2 days, suffering
with a cold, or so I thought. When he was not better on the third day,
I brought him to the Bellevue ER. When the triage nurse measured his 02
blood level, it was so low that my son was immediately admitted to the
Bellevue ICU. He remained there for 3 days, as doctors struggled to get
his breathing under control with IV medications.
I was truly shaken when the doctors told me that if any more time
had been lost getting Mitch medical attention, Mitch could have died.
The doctors questioned me extensively about dust, pets and smoking in
our apartment. I told them we had no pets and no one smoked and I
always kept the apartment clean. My kids had seen a pediatrician every
year and both had always been healthy.
What had changed at home and in our neighborhood was the smoke and
dust from 9/11. The doctors said, no, that wasn't it, because ``the EPA
said the air was safe.'' (For the same reason, the only cleanup our
building got was when the NY City Housing Authority wiped the window
sills.)
Mitch was released from the ICU but they kept him in the hospital 5
additional days so his condition could be monitored. He was given a
diagnosis of asthma and sent home. Although he continued to take the
asthma medicine they prescribed, he continued to get severe asthma
attacks that were so bad that he had to be admitted to the hospital
several more times. I was getting desperate.
Also, my daughter, Amanda, had been affected. She was 9 years old
on 9/11. She had no prior respiratory problems. A number of months
after 9/11, I had to take Amanda to the ER, where she was first
diagnosed with a sinus infection and put on antibiotics. A few months
later, the same thing happened. This time, the ER doctor gave Amanda a
pump, but she always ended up getting bad sinus infections whenever she
got a cold.
Then, in 2007, I contacted the office of city council member Alan
Gerson and his staff told me about the Bellevue WTC Clinic. I brought
Mitch and Amanda to Bellevue and they were thoroughly evaluated. They
got breathing tests and for the first time, they were put on the right
set of medications.
I credit the Bellevue WTC doctors with giving my kids the kind of
treatment they need to lead normal lives. My son and daughter have been
doing great. Now, they can live like kids again. If the program is
ended, where will they go? If my children have any more asthma or sinus
problems, the doctors at Bellevue WTC are there for them. They know my
children's history from 9/11, they know what to look for and how to get
them well.
Please do everything you can to make sure that this essential
program will be there for the people whose health was harmed at such a
vulnerable age, and for all the sick survivors of the 9/11 attacks.
Sincerely,
Lillian Bermudez,
New York City.
______
Barbara Caporale,
New York, NY 10009,
July 9, 2010.
Dear Esteemed Senators Harkin and Enzi: My name is Barbara
Caporale, and I am a Lower Manhattan resident and the parent of a child
entering the 8th grade in the fall. For the past 13 years, we have
lived on East 5th Street in the Lower East Side, approximately 2 miles
from the World Trade Center site, inside the original ``frozen zone,''
set up by the police and the National Guard to secure downtown in the
weeks after 9/11.
On 9/11, I was walking my daughter to her first day at a daycare/
preschool when we heard what we thought was an incredibly loud
backfire. After dropping her off, I returned home, where I watched the
buildings collapse from the roof of my building. I filled the bathtub
with emergency water, scrambled to buy supplies at the grocery for
myself and my parents, and then picked up my child in a taxi. She rode
on top of our supplies.
The air in the Lower East Side of Manhattan quickly became thick
with smoke and grit and smelled like a mixture of an electrical and
chemical factory fire and crematorium. Cars, buildings and playground
equipment were coated in dust, and were never cleaned in our area.
Two days later, I was forced to return to work when the mayor
declared the zone from 14th street to Houston Street re-opened. As a
parent, I was extremely anxious about sending my child back to her
daycare and about my own return to my worksite, but I couldn't afford
to lose my job. It was evident that things weren't ``back to normal''
as the Mayor deemed them to be, nor was the environment safe as the EPA
declared.
Like many others in my community, I did not have the means to take
my child out of the city to escape the smoke and the dust.
In a semblance of normalcy, and to relieve stress, the children
played in the neighborhood playground, where they cheered the rescue
vehicles from many States, coming and going, all coated with debris. It
was surreal. There was dust and grainy grit on the playground equip. My
daughter and I wore little cowgirl bandannas to cover our noses and
mouths.
We live on East 5th Street, in the Lower East Side, four blocks
above Houston Street on the top floor facing south towards the World
Trade Center site. The smoke and dust plume would infiltrate our
apartment. My daughter and I could not breathe in our apartment for
most of the 3 months while the fires burned, particularly at night with
the atmospheric inversions. We would wake up every few hours, coughing.
It was much worse for my child.
Over the months, she began to develop mold and extreme chemical and
smoke sensitivity. She also started to suffer from migraines which
forced her to be immobile due to the pain and nausea. To this day,
migraines that are often crippling make it impossible for her on many
days to do homework.
She also developed shortness of breath. In 2002, my daughter was
diagnosed with ``respiratory syndrome'' by her pediatrician and was
prescribed Singulair and Flonase.
My daughter was a participant in a Pediatric Respiratory Study of
children enrolled in daycare centers below 14th street, which was
conducted by epidemiologists from the New York Academy of Medicine, 1
year post 9/11. It showed that in an age range of population with an
expected asthma rate of 7 percent of asthma, approximately 40 percent
of parents reported their child either having respiratory syndrome,
coughs and wheezing without ever having an asthma diagnosis, or
reported their child having asthma with increased intensity.
Our area never got a proper environmental cleanup. After the months
of running our air conditioner after 9/11, I saw that it was
contaminated with WTC dust, and I never used it again, though I could
not afford to replace it.
Before 9/11, my daughter had no health problems. After 9/11, my
daughter who was an early dancer, active and dexterous, began to
exhibit an obvious lack of spatial awareness, and would bump into
things and people. My child had been a very early speaker and is very
intelligent with an amazing memory. But I began to notice as her school
career was advancing, that she was not able to focus as well on her
work. and that she was experiencing memory problems. After a series of
neurological tests revealed some cognitive issues, we were advised to
make her an appointment for a developmental evaluation at the WTC
Environmental Health Center.
She gets sick more often since 9/11. After a recent illness, which
kept her out of school for a week, and another recent prior one, she
was given an inhaler last month, to see if this would help her
headaches and coughing.
She is stressed by the constant ``war on terror'' reports on TV,
from which I try to shield her, (but now that she is older, she needs
to watch current events). She experiences anxiety when we encounter
subway stations closed for ``police activity, and hear the NYPD's
`backpacks are subject to search' announcements.'' Otherwise she is a
creative, beautiful, and lovely child, who suffers bouts of sadness and
feeling overwhelmed.
So many children continue to suffer health problems as a result of
the 9/11 attacks. Please help our children get proper diagnosis and
treatment by fully funding the World Trade Center Environmental Health
Center Pediatric Survivors program.
Thank you.
Respectfully,
Barbara Caporale.
______
Mary Perillo,
New York, NY, 10006,
July 9, 2010.
Hon. Tom Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Re: S. 1334/H.R. 847 ``The James Zadroga 9/11 Health & Compensation
Act of 2009''
Dear Chairman Harkin and Ranking Member Enzi: I am a resident of
the closest residential building to the World Trade Center (WTC)--we
are right across the street. From the beginning, in the first days
after September 11, the EPA, incredibly, was saying that the air was
safe, but my neighbors and I knew that it couldn't possibly be safe to
be inside our apartments.
In our building where the most windows had blown out, we had
massive piles of WTC debris, which was composed of items ranging from
seven-foot pieces of metal down to dust particles measurable in microns
or fractions of microns. Four tenants had dust samples taken from their
apartments tested for asbestos, and it was found in all of the four
apartments. The amounts were between 1.8, and 3.3 percent by bulk
analysis--all exceeded the EPA's safety threshold.
At that point, I start trying to get to any government agency that
would help us, to test indoor air in our building in hopes that that
would effect an asbestos clean up for the building. I was also hoping
to find some official guidance, or even a set of standards for safe re-
occupancy. Finally, someone from the New York City Department of
Environmental Protection (DEP) came to the building and met with a few
of us tenants and representatives from the building's management
company. He said he was coming to the building to do some tests, but he
did none. He wouldn't tell us why, he just said he ``wasn't allowed.''
So then I called, wrote and/or visited FEMA, HUD, NYC DOH, NYS DEC,
EPA, OSHA, the New York State attorney general's office Bureau of the
Environment, Pace Environmental Law Clinic and NYCOSH. This was
essentially my full-time job for 6 weeks. After that, I did this for a
few hours a day, and after that for a few months and sporadically
through summer 2002. None of these agencies or organizations could or
would test our homes.
We fell through the cracks. We are not first responders, our
apartments are not public spaces, and we don't own our apartments.
There was nobody to protect us or even provide us with accurate
information about the toxic dust and debris sitting in our homes,
several feet deep in places.
At one point I had a conversation with an inspector at the
Department of Health and asked him, ``So what you're telling me is that
the EPA won't test because they know what they'll find?'' And he said
yes.
So as you can see, by that exchange, sometimes individuals at these
agencies tried to help, at least by speaking the truth off the record.
But EPA and other agencies would not allow them to give us the help we
needed. So the pattern was that they would make an appointment--the
first one took 6 weeks to make--and then at 4:55 p.m. the night before,
somebody else would call from the relevant agency or department and
cancel the appointment, telling me they were not allowed to do any
testing.
My next appointment--yes, I kept trying anyway--was for the 30th of
November. At that time they sent me an e-mail canceling and stating:
``Upon further review, it was determined that the address in question
is located in the hot zone.'' Of course, I've been telling them that
from day one. And that New York City Office of Emergency Management
(OEM) would ``coordinate re-occupancy,'' and that an inspection would
not be conducted ``until the building is cleared for re-occupancy.''
And who would clear us?
All this time, my neighbors and I were spending long hours in our
apartments searching for important keepsakes and personal belongings,
cleaning up by literally shoveling the WTC dust into plastic bags--and
many of us were experiencing scary symptoms we had never had before.
For me, it started with nosebleeds and breathing problems.
So following the letter about OEM, I turned to whatever individuals
I could catch on the phone or in person, at any agency, who would talk
to me. Individual OSHA workers were probably the most helpful and
ending by truthfully acknowledging that the conditions in our homes
were a threat to our health but always stating ``But you didn't hear
that from me!'' Looking at the OSHA and NYCOSH's Web sites I found
workers instructions because I figured if I'm spending 8 hours cleaning
up in there, I am a worker.
I went out and bought my P-100 respirator, because of what I had
been reading in the press, and what I had known from the tests we had
done in our building. There was knee deep debris in my apartment which
testing showed was nearly 2 percent asbestos and an OSHA person had
told me I need a respirator to be in THE NEIGHBORHOOD at all.
After 5 months of one agency passing me off to the next to the next
to the next, just to make sure that things hadn't improved, I tried it
again in February 2002.
First I called the EPA Region II offices. I was connected by the
receptionist to somebody in Air Quality who told me that I had to speak
to somebody in the City Department of Health. They gave me the numbers
of the city Department of Health--which were new numbers. EPA didn't
used to give me numbers, then at the DOH Environmental Inspection
Bureau, an Inspector Stable told me I had to call the DEP. At DEP I
left three messages--with three different people, asking for a callback
about questions about standards.
After about six visits to my apartment, I would wake up coughing
the morning following the visit. I headed to the doctor and was told
that I had something that could be described as ``spontaneous asthma''
and was given one of those inhalers. A week after that, I coughed
myself into an emergency room in St. Vincent's. In subsequent years I
developed GERD and still get out of breath coming up the subway stairs.
But in 2001, once I got proficient with NYCOSH and OSHA's
recommendations for workers and bought the P100 respirators the
reaction subsided somewhat. But what that meant is every time we walked
into my apartment, I'd need to don a Tyvex suit with hood and boots,
latex gloves, respirator and goggles. And I'd need to see if I could
use the wash station at the site, on the way out to try not to track
this where I was staying. But I couldn't afford to get new Tyvek each
day. My studio and equipment was destroyed, I had no source of income.
I finally found out in 2002, that I wasn't changing the cartridges on
the respirators frequently enough.
Anyway, to try to save the possessions, to try to save our artwork,
to try to save our livelihoods, we had to be amateur Tier II OSHA
workers.
We went to try to get professional help cleaning the apartments.
Estimates were $19,000 to $26,000 for EACH apartment. This is not
something most of us could afford. The Red Cross offered us between
$1,000 and $2,000 for cleaning an apartment that required asbestos
remediation which costs approximately $20,000.
The landlord wanted us back in and paying rent and wanted us to
sign a wavier that named clearance levels for moving back into the
building--but, as I said, we couldn't get any State or Federal agency
to give us numbers. The city was telling us to clean up with wet mops
and wet rags. It was unconscionable.
Finally some brave souls took up our cause. Between Congressman
Nadler who brought the EPA Ombudsman Hugh Kaufman to hold a hearing in
NYC in 2002 and shine a light on the EPA leaving the residents and
workers and responders in Lower Manhattan in the dust, and State
Assembly Speaker Sheldon Silver, who forced the agencies and utilities
to sit down and meet with us to come up with a plan to get us back home
(not to mention, what I understand to have been closed door meetings
between an unnamed State assistant attorney general and lawyers for
EPA), EPA was forced into doing a proper testing and remediation for
our building using DEP contractors.
But what about the rest of the neighborhood? What about all of
Lower Manhattan? What about 10 years of heavily contaminated Deutsche
Bank next door? Rooftops that were NEVER cleaned? What about the
schools in the area whose kids came back way too soon?
And what was the motive of Christine Todd Whitman, and other top
officials in the EPA for lying to the public and for not doing their
job? Now is the time to make this terrible betrayal right. The Federal
Government needs to take responsibility for abandoning us after we were
attacked at home by terrorists on that horrible morning.
Thanks to Senator Gillibrand we have a new champion in Washington
who does see that we should not be abandoned by our own government and
that we should have access to health care for our WTC-related
illnesses.
We are now turning to you to make sure that the federally funded
WTC health programs needed by responders and survivors are there for us
now and in the future.
Sincerely,
Mary Perillo.
______
July 9, 2010.
Hon. Tom Harkin,
731 Hart Senate Office Building,
Washington, DC 20510.
Hon. Mike Enzi,
379A Senate Russell Office Building,
Washington, DC 20510.
Dear Chairman Harkin and Ranking Member Enzi: As a 9/11 survivor, I
am writing to state my strong support for S. 1334, the``James Zadroga
9/11 Health and Compensation Act of 2009,'' that would provide medical
monitoring, treatment and compensation for responders and survivors
whose health has been impacted by the 2001 terrorist attack on the
World Trade Center (WTC) and its aftermath.
I strongly encourage you to pass this bill out of the Health,
Education, Labor, and Pensions Committee, with the strongest
protections possible for the survivors of
9/11.
H.R. 847, the House of Representatives' version of this bill, has
passed both the House Judiciary and Energy and Commerce committees,
which is a significant step towards achieving justice for the survivors
and responders of 9/11.
I live three blocks south of the World Trade Center (WTC) site. On
September 11, I was caught in the dust cloud. After 5 months of being
displaced from my building, I moved back into my apartment. Even after
being away, I saw upon our return that there were many reservoirs of
toxic dust from 9/11 that permeated my home, my building and my
neighborhood. The EPA conducted no testing of our building, in spite of
the fact that it had deemed buildings in the immediate vicinity (where
conditions seemed identical to ours) to be contaminated. To this day I
am not certain of the degree to which my apartment and the rest of my
building have been cleaned of World Trade Center dust. I still worry
about reservoirs of dust in behind my heater and in the air ducts.
Although I had pre-existing asthma, my asthma became more severe
after 9/11. Subsequent tests at the Bellevue WTC Clinic showed that my
lung capacity was only 43 percent of normal. During this time I also
suffered from severe acid reflux. I am now on five medications for my
ailments. I am very fortunate to be getting specialized treatment at
the World Trade Center Environmental Health Center (WTC EHC) at
Bellevue, from doctors trained in recognizing and treating WTC
illnesses.
The director of the WTC EHC, Dr. Joan Reibman has established the
only center of excellence to treat Lower Manhattan residents, area
workers and students who are now sick from their 9/11 exposures. Dr.
Reibman was one of the first in the medical profession to establish a
link between the 9/11-related exposures of inhabitants who were not
first responders, and their subsequent illnesses. The WTC EHC is
consistent and thorough in its methods for treating all illnesses
related to 9/11, both psychological and physical, and currently depends
on limited funds from the city's coffers.
Today there is no cure for my condition, and it is medically
necessary for me to be properly monitored and maintained on medication
in order for me to stay healthy. In addition, it is essential that
those of us who are sick have the benefit of being followed by doctors
at centers of excellence who will be able to recognize any trends among
the population of WTC-affected non-responders.
The bottom line is that unless the Federal Government is willing to
fund WTC-related health care for residents, I will one day cease to get
the care I need from Bellevue.
The events of 9/11 have made me a victim of a crime. The negligence
of the EPA, and its failure to tell the public about the true nature of
the toxic smoke and dust from the WTC disaster, meant that those in
proximity were subject to ongoing health risks that could have and
should have been prevented. Now my health is suffering. I ask the
Federal Government to provide this much-needed support for those of us
who were harmed as a result of this attack on our Nation.
I am sincerely grateful for your time and attention in support of
this bill.
Sincerely,
Esther Regelson,
New York, NY 10006.
______
June 25, 2010.
Hon. Tom Harkin,
U.S. Senator,
Hart Senate Office Building,
Washington, DC 20510.
Dear Senator Harkin: Thank you and your distinguished members of
the Senate for allowing me an opportunity to tell my 9/11 story and to
let me express the importance of passing the James Zadroga Bill (H.R.
847) with bipartisan support by the ninth anniversary of 9/11.
My name is Marvin Bethea, and I was a healthy NYC Paramedic
dispatched to the World Trade Center (WTC) on September 11, 2001.
Everyone in this room remembers exactly where they were when first
hearing about 9/11. I arrived after the second tower had been struck.
There was total chaos at the scene.
I was a block away treating patients in a bank. As I was about to
evacuate the patients from the bank, someone yelled, ``the tower the
tower!'' As I looked up, I saw, and then heard the rumble of the tower
beginning to fall. I told everyone to take cover in the bank. I knew I
was going to die. I just asked God to let it be quick. In my 23 years
in Emergency Medical Service (EMS), I have had a gun put to my head
twice and been shot at once. Nothing compares to the tower falling
down, NOTHING!!!!
We went from day to night. Normally at night, you can see a little.
Imagine being completely blind, hearing this loud noise getting closer
and closer to you until the noise was on top of you while being hit
with debris from all over and having dirt (which we know now was toxic)
being poured down your throat. Everyone was able to finally get out of
the bank and head north. Damn, I would have loved to have joined them,
but I knew I had a job and duty to do, so that is what I did with
honor.
Finding my paramedic partner after the first tower collapse, I
assisted him in loading injured people in our ambulance. I stayed at
the scene to treat other injured people. A woman came out of the second
tower bleeding and crying. She collapsed in front of me. As I helped
her, I told her, ``you are going to make it.'' At that point, I heard
the rumble again; it was the second tower collapsing. Luckily for us,
the Hilton Millennium was right in front of us. As we dove into the
hotel, we were covered in debris. Again I asked God to let it be quick.
Once again my life was spared. As a black man, you couldn't tell what
race I was due to all the dust that had covered me.
I could go on and on about what we saw that day, but I am sure all
of you have heard numerous horror stories about that day. I was healthy
and happy before
9/11. After losing 16 people I knew from the police, fire and EMS
departments that day, I am not healthy and I am not happy. You see, the
stress of 9/11 became too much, and on October 16, 2001 at 41 years
old, I suffered a major stroke which left me paralyzed. I said if I can
survive the collapse of two towers, I can beat a stroke. I recovered
and went back to full duty as a paramedic 3 months to the day.
I was taking two medicines (for ulcerative colitis) before 9/11.
Now I currently take between 10-15 medicines depending on how I feel.
My diagnoses are Post Traumatic Stress Syndrome (PTSD), major
depression, asthma, sinusitis and sleep apnea. I had to stop working
January 2004.
I pray to God every day I don't develop any other health problems
because if I do, the workers comp systems will make my life ``A Living
Hell'' about the claim. If you found what I just said offensive then
maybe you will get the sense that myself and so many of the people here
(at the hearing) find it offensive the way we are being treated.
You called us ``Heroes and Treating Us like Zeroes.'' Our elected
officials and government said ``We Will Never Forget'' and yet we
constantly see a case of what I refer to as Political Blindness. For
those of you who don't know what ``Political Blindness means--Look the
Other Way.'' Tell me if I am wrong, but I feel like so many other
responders do, that the government and the workers comp system want us
to die so they can say ``Well We Just Got Rid of Another One of Them.''
At times, I wish I had died on 9/11 so I wouldn't have to be victimized
twice by this horrific event.
Opening the 9/11 Fund will not give me my health back, hell it
won't even make me whole. I want the fund to assist my fellow
responders who are trying to get their lives and families back. Give us
back some of our dignity. Do you have any idea what stress does to a
person who can't provide for his or her family, let alone themselves? I
was fortunate to have received something from the fund initially.
However, I am incurring medical expenses that are not covered by my
insurance (dental work). Believe me, I am grateful that I have
insurance, but you must remember that it is no fault of my own that I
am unable to work anymore. I don't have the option of, if I need
something, just working a few extra shifts to get it. I have to just
make do. Fortunately, I have friends who have helped me get some of the
things I needed done. Not everyone has that option.
It would be great to just be able to receive the benefits we are
entitled to. I did not say ``entitlement'', as some Members of Congress
have referred to the fund, as if 9/11 victims will be receiving
something we do not deserve. When I personally witnessed a Member of
Congress refer to H.R. 847 with such a negative spin, I felt worse than
someone calling me the N word. Why not just kick me to the curb and
spit on me? I am not here politically grandstanding either.
This reminds me of when I was trying to obtain my workers
compensation benefit. The lawyer representing my employer's insurance
carrier said to the administrative law judge, ``Your Honor, how do we
know that Mr. Bethea was actually down there and if he was, what was he
doing there?'' Mind you, my employer had already acknowledged I was
down there because, in May 2002 for National EMS Week, myself and five
others from my department were presented plaques from St. John's
Hospital of Queens (Division of St.Vincent's Hospital my employer) and
a citation from NYC City Council for our heroic work on 9/11. The event
was on television and in the newspaper, so how do you come to court to
raise an issue that you know is false? The rage I had at that moment I
just wanted to climb across the table and do my best to stomp the
attorney and to spit in his face. That type of rage troubles me because
I am not a violent person, but you can only be pushed so far.
I urge the government to instruct all agencies, State and Federal,
to work with us to help us get what benefits we are entitled to and to
stop trying to find every sleazy way not to give us our benefits. I
could go on and on about the James Zadroga 9/11 bill H.R. 847, but I
won't.
I just want to say this; it has been almost 9 Years. Can you
imagine the outrage this country would have had if it took me 9 years
to respond to the WTC? Not only would the public have wanted my job and
my medical certification, they would have wanted me charged criminally
for breach of duty and to prosecute me to the fullest extent of the
law. Those were the standards I was held to every day, so why shouldn't
our government be held to the same standards? Were the men and women of
9/11 any less heroic than our soldiers fighting overseas today? The
answer to that is NO. As a matter of fact, many of the soldiers I have
met say they enlisted because of what happened to us on 9/11.
Put your political parties and differences aside and let's unite as
one as we did on 9/11. As John Lennon said, ``Come together right now
over me''. Thank you for giving me this opportunity to speak. God Bless
each and everyone one of you and God Bless the United States of
America.
Sincerely,
Marvin E. Bethea,
NYC Paramedic,
St. John's Hospital of Queens.
______
Community Advisory Committee,
June 25, 2010.
Hon. Tom Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Re: S. 1334/H.R. 847 ``The James Zadroga 9/11 Health & Compensation Act
of 2009''
Dear Chairman Harkin and Ranking Member Enzi: On behalf of the
Community Advisory Committee (CAC) of the World Trade Center
Environmental Health Center (WTC EHC), we write in strong support of S.
1334, the James Zadroga
9/11 Health and Compensation Act of 2009, a bill that would provide
medical monitoring, treatment and compensation for responders and
survivors whose health has been impacted by the 2001 terrorist attack
on the World Trade Center (WTC) and its aftermath.
We strongly urge you to pass this bill out of the Health,
Education, Labor, and Pensions Committee, with the strongest possible
protections for the survivors of
9/11. H.R. 847, the House of Representatives' version of this bill, has
now passed both the House Judiciary and Energy and Commerce committees,
a significant step towards achieving justice for the survivors and
responders of 9/11.
As we know you recognize, 9/11 was an attack on our Nation that
targeted civilians, many of whom were exposed to toxic dust and smoke
from the collapse and burning of the WTC. In addition, along with many
9/11 responders, many people who lived, worked, or attended school in
Lower Manhattan at the time of the attacks have become ill as a result
of the Federal Government's false assurances that ``the air is safe''
and its failure to provide proper environmental cleanup. It is
therefore imperative that our Federal Government help to provide WTC-
specialized care for all whose health was harmed as a result of the WTC
disaster.
The Zadroga Act would guarantee 10 years of Federal funding to
specialized WTC-related medical programs. The continued availability of
specialized medical care at these programs from health professionals
who have developed expertise in treating 9/11-related illnesses is
critical.
The WTC EHC is the center of excellence serving the health needs of
non-
responder survivors of the 9/11 attacks. It was formed in direct
response to the emergence of serious 9/11 health effects in the
community.
In 2007, the Community Advisory Committee of the WTC EHC was
formalized. It is made up of representatives of advocacy and community-
based organizations, labor unions, three New York City community
boards, individual patients at the WTC EHC and advocates for those who
were affected by the WTC attacks and who were exposed to environmental
contaminants in its aftermath. A broad base of over 30 organizations is
currently represented on the CAC. Many of those organizations have
separately submitted letters of support for S. 1334 as well.
We therefore especially ask that, as you consider S. 1334, that you
protect the ``Survivor Program,'' currently based at the WTC EHC, so
that it can continue to meet the needs of more than 4,700 residents,
area workers, and students, including people now residing in 23 States,
who survived 9/11 but who are now sick as a result of their WTC
exposures. Many survivors, including children, are now struggling to
recover their health, and others may develop WTC-related illnesses in
the future. They urgently need your help.
It is particularly important to remember that the concentration of
a group of affected patients in one program facilitates the
identification and treatment of 9/11-related illnesses and provides a
special base of knowledge not duplicated elsewhere. The survivor
program offers a window on the health conditions suffered by those in
the survivor community and insights on the unmet health needs of these
populations.
The WTC EHC CAC strongly urges you to do all you can to ensure that
this important legislation passes your committee, the Senate as a whole
and is brought to President Obama for signature.
Nearly 9 years after the attacks, we urge you to help make a just
Federal health response to 9/11 a reality.
Sincerely,
Kimberly Flynn,
Community Co-Chair.
Robert Spencer,
Labor Co-Chair.
______
City of New York Fire Department,
Brooklyn, NY 11201-3857,
June 25, 2010.
U.S. Congress,
Senate Committee on Health, Education, Labor, and Pensions,
428 Senate Dirksen Office Building,
Washington, DC 20510.
Re: S. 1334--James Zadroga 9/11 Health and Compensation Act of 2009
Dear Senate Committee Members: I am grateful for the opportunity to
submit this letter on behalf of the New York City Fire Department
(FDNY) in support of S. 1334. This bill provides absolutely essential
long-term funding for the monitoring and treatment of our members who
took part in the rescue and recovery at the World Trade Center (WTC)
site following the terrorist attacks of 9/11.
In the months following the attacks, nearly every FDNY member
suffered significant and repeated exposures to WTC dust and chemicals,
risking their life and health. For almost a decade since, the FDNY
World Trade Center Medical Monitoring and Treatment Program has allowed
the Department to provide vital treatment to and monitoring of our
affected members. Because we are the only group with pre-9/11 baseline
health data, the FDNY is uniquely capable of measuring the effects of
WTC exposure on our members.
Congressional funding has been the linchpin of these efforts. It
has allowed us to continue our monitoring and treatment, and also to
analyze our results, develop treatment protocols and share this
information with other healthcare providers caring for patients facing
similar exposures. But without legislation ensuring sustained funding,
the program's future remains uncertain.
On a personal note, I was at Ground Zero at the time of both
collapses. Many friends and co-workers of mine lost their lives that
day. Many others continue to suffer with respiratory illness and other
conditions--both mental and physical--
requiring ongoing, extensive treatment. I know first-hand how our
members responded on 9/11, how they have been affected, and how
critically important our treatment and monitoring programs have been to
them.
Our first responders demonstrated their commitment to serve the
public on 9/11. Now, we need Congress and the President to make a long-
term commitment to them. As always, we sincerely appreciate all of your
past efforts and your support of our members.
I strongly urge you to support S. 1334.
Sincerely,
Salvatore J. Cassano,
Fire Commissioner.
______
June 27, 2010.
Dear Senator Gillibrand: I am writing with regard to my husband
Kevin J. Cassidy. I am Rose Cassidy. The two of us met in 1970. Kevin
had recently returned from service with the U.S. Army. He had taken the
test to become a NYC Firefighter in 1972. A goal of his since childhood
and that is all I heard him talk about doing. The list was then frozen
for 5 years. He almost gave up but in the fall of 1977 he was called to
Join the Fire Department.
He worked in the Bronx for 13 years. Most of his time was spent in
Ladder Company 48. Due to his promotion to Lieutenant he transferred to
work in Brooklyn with Ladder Company 104. While going into work the
evening of May 31, 1991 he responded to a fire call (while still off
duty) and saved a mother and her three children. This was done without
the aid of a mask, radio, or hose line.
On March 10, 1998, Kevin was promoted to Captain. He eventually
settled into Engine 320 in Bayside, Queens. On September 11, 2001 I
arrived at work and the girls told me to watch what was happening on
TV. The first Tower was on fire. I immediately called Kevin at home. He
just jumped into his car and was off to help. He made the last bus to
take staff down to the site. They made it there before the collapse of
Tower 1. The rest is history. We heard almost nothing from him that
week as they struggled with events they never had to deal with. My
daughter Jean who was living at home wouldn't sleep until her dad was
home.
Kevin was a healthy and fit man. It was in 2003 on a routine Fire
Department physical that they detected microscopic blood in his urine.
At first they thought they were Kidney stones but the CT showed a mass.
Kevin had a nephrectomy on his right side. His tumor was a mix of renal
cell carcinoma papillary and collecting duct type. Collecting duct type
is a rare and usually aggressive cancer. In November 2007 Kevin had a
change on his CT of his Chest. There were two enlarged lymph nodes.
This is one of the most common metastatic sites for Renal Cancer. It
was through the out-of-the box thinking of his oncologist that Kevin
had Chest surgery to remove these nodes. There is no known chemotherapy
to date to treat this type of cancer. This bought him time until on 8/
30/2009 he lost the battle with this disease.
I know the emotional and physical impact dealing with cancer has on
a family. I have lost my life partner, my girls their father, his
mother wondering why her son died before her, and many others in the
family affected by the loss. Just a few days before Kevin passed away
we were consulting with an oncologist in Chicago. We were looking for
that needle in the haystack that might make a difference. When that
oncologist said to him, I guess with what we know now you would have
done things differently. Kevin quickly replied, `` Absolutely not, we
had brothers and people down there that needed help.''
I am requesting that the victims from 9/11/01 be allowed to be
treated and compensated for the many ailments the exposure to such
toxic dust and fumes from that day caused. We know that some of the
ailments were immediate such as Asthma but many others do not show up
until years later as in asbestos exposure. My concern is for all who
were at Ground Zero.
Sincerely,
Rose Cassidy.
______
Community Board No. 1,
June 28, 2010.
Hon. Tom Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions,
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions,
U.S. Senate,
Washington, DC 20510.
Re: S. 1334/H.R. 847, the ``James Zadroga 9/11 Health and Compensation
Act of 2009''
Dear Chairman Harkin and Ranking Member Enzi: We are writing in
strong support of S. 1334, the ``James Zadroga 9/11 Health and
Compensation Act of 2009,'' that would provide medical monitoring,
treatment and compensation for responders and survivors whose health
has been impacted by the 2001 terrorist attack on the World Trade
Center (WTC) and its aftermath.
We strongly encourage you to pass this bill out of the Health,
Education, Labor, and Pensions Committee, with the strongest
protections possible for the survivors of 9/11. H.R. 847, the House of
Representatives' version of this bill, has passed both the House
Judiciary and Energy and Commerce committees, which is a significant
step towards achieving justice for the survivors and responders of 9/
11.
9/11 was an attack on our Nation that targeted civilians. In
addition, many 9/11 responders and New Yorkers have become ill as a
result of the Federal Government's false assurances in the aftermath of
the attack that the air was safe and its failure to provide proper
environmental cleanup. It is therefore imperative that our Federal
Government provide specialized care for everyone whose health was
harmed as a result of the WTC disaster, responders and survivors alike.
The Zadroga Act would guarantee 10 years of Federal funding to
specialized medical programs that provide the right kind of treatment
for the people who lived, worked or attended school in the area, as
well as the heroic responders who came to their rescue, for their 9/11-
related illnesses. The continued availability of medical care from
health professionals who have developed expertise in treating 9/11-
related illness is critical.
On behalf of Community Board One, which represents the Lower
Manhattan community in which the World Trade Center site is located, we
urge you to protect the ``Survivor Program,'' currently based at the
World Trade Center Environmental Health Center (WTC EHC), so that it
can continue to meet the needs of the more than 4,700 residents, area
workers, and students, including people now residing in 23 States, who
survived 9/11 but who are now sick as a result of their WTC exposures.
Many survivors, including children, are now struggling to recover their
health, and others may develop WTC-related illnesses in the future.
They urgently need your help.
Nearly 9 years after the attacks, we urge you to help make a just
Federal health response to 9/11 a reality.
Sincerely,
Julie Menin,
Chairperson.
Catherine McVay Hughes,
Vice Chairperson.
______
Community Board No. 2, Manhattan,
New York, NY 10012-1899.
June 24, 2010.
Hon. Tom Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Re: S. 1334/H.R. 847, the ``James Zadroga 9/11 Health and
Compensation Act of 2009''
Dear Chairman Harkin and Ranking Member Enzi: We are writing to
state our organization's strong support for S. 1334, the ``James
Zadroga 9/11 Health and Compensation Act of 2009,'' that would provide
medical monitoring, treatment and compensation for responders and
survivors whose health has been impacted by the 2001 terrorist attack
on the World Trade Center (WTC) and its aftermath.
We strongly encourage you to pass this bill out of the Health,
Education, Labor, and Pensions Committee, with the strongest
protections possible for the survivors of 9/11. H.R. 847, the House of
Representatives' version of this bill, has passed both the House
Judiciary and Energy and Commerce committees, which is a significant
step towards achieving justice for the survivors and responders of 9/
11.
As we know you recognize, 9/11 was an attack on our Nation that
targeted civilians. In addition, along with many 9/11 responders, many
New Yorkers have become ill as a result of the Federal Government's
false assurances that ``the air is safe'' and its failure to provide
proper environmental cleanup. It is therefore imperative that our
Federal Government provide WTC-specialized care for all whose health
was harmed as a result of the WTC disaster, responders and survivors
alike.
The Zadroga Act would guarantee 10 years of Federal funding to
specialized medical programs that provide the right kind of treatment
for the people who lived, worked or attended school in the area, as
well as the heroic responders who came to their rescue, for their 9/11-
related illnesses. The continued availability of medical care from
health professionals who have developed expertise in treating 9/11-
related illness is critical.
Our organization represents Lower Manhattan, from 14th Street to
Canal Street, 4th Ave/Bowery to the Hudson River, an area that was
impacted by the dust cloud and was for many days under the plume
emanating from the fires at Ground Zero, but was nonetheless excluded
from the Environmental Protection Agency's 2002-03 clean up. Scientists
from the University of California at Davis took readings from the roof
of the Federal Building at 209 Varick Street in our district and found
higher concentrations of particulates than in their reading from the
Kuwait oil fires during the Gulf War.
As representatives of the Lower Manhattan community, we especially
ask that you protect the ``Survivor Program,'' currently based at the
World Trade Center Environmental Health Center (WTC EHC), so that it
can continue to meet the needs of the more than 4,700 residents, area
workers, and students, including people now residing in 23 States, who
survived 9/11 but who are now sick as a result of their WTC exposures.
Many survivors, including children, are now struggling to recover
their health, and others may develop WTC-related illnesses in the
future. Lives have been restored and saved by the uniquely qualified
and knowledgeable medical team at the survivor's Center of Excellence
that began at Bellevue, under Dr. Joan Riebman's medical direction and
leadership, and that has expanded to include Gouverneur and Elmhurst
hospitals. They urgently need your help.
Nearly 9 years after the attacks, we urge you to help make a just
Federal health response to 9/11 a reality.
Sincerely,
Jo Hamilton,
Chair, Manhattan Community Board 2.
Jason Mansfield,
Chair, Environment, Public Safety and Public Health Committee,
Manhattan Community Board 2.
______
Concerned Stuyvesant Community.
Re: S. 1334/H.R. 847, the ``James Zadroga 9/11 Health and Compensation
Act of 2009''
Dear Chairman Harkin and Ranking Member Enzi: On behalf of
Concerned Stuyvesant Community, I am writing to state my organization's
strong support for S. 1334, known as the James Zadroga 9/11 Health and
Compensation Act of 2009, that would provide medical monitoring,
treatment and compensation for responders and survivors whose health
has been impacted by the 2001 terrorist attack on the World Trade
Center (WTC) and its aftermath.
We strongly encourage you to pass this bill out of the Health,
Education, Labor, and Pensions Committee, with the strongest
protections possible for the survivors of 9/11. H.R. 847, the House of
Representatives' version of this bill, has passed both the House
Judiciary and Energy and Commerce committees, which is a significant
step towards achieving justice for the survivors and responders of 9/
11.
As we know that you recognize, 9/11 was an attack on our Nation
that targeted civilians. In addition, along with many 9/11 responders,
many New Yorkers have become ill as a result of the Federal
Government's false assurances that ``the air is safe'' and its failure
to provide proper environmental cleanup. It is therefore imperative
that our Federal Government provide WTC-specialized care for all whose
health was harmed as a result of the WTC disaster, responders and
survivors alike.
The Zadroga Act would guarantee 10 years of Federal funding to
specialized medical programs that provide the right kind of treatment
for the people who lived, worked or attended school in the area, as
well as the heroic responders who came to their rescue, for their 9/11-
related illnesses. The continued availability of medical care from
health professionals who have developed expertise in treating 9/11-
related illness is critical.
Our organization represents parents of students, students, and
faculties of Lower Manhattan schools who were exposed during this
disaster and its aftermath, many continuously through today.
Reminder that as Students/Faculty--They had no option but to return
to their school after as short as a 3-week stay elsewhere--after false
reassurances of safety, due to inaccurate reports on the cleanup. A
toxic brew of materials both in schools through the ventilation system
and outside with a hazardous debris barge dumping operation of the
discarded material right next to the schools continued the dust and
debris exposures through nearly the end of that school year. That
churning of toxic dust was constant over 9 months and was not properly
cleaned to this day.
As a Lower Manhattan community-based organization, we especially
ask that you protect the ``Survivor Program,'' currently based at the
World Trade Center Environmental Health Center (WTC EHC), so that it
can continue to meet the needs of the more than 4,700 residents, area
workers, and students, including people now residing in 23 States, who
survived 9/11 but who are now sick as a result of their WTC exposures.
Many survivors, including children, are now struggling to recover their
health, and others may develop WTC-related illnesses in the future.
They urgently need your help.
Nearly 9 years after the attacks, we urge you to help make a just
Federal health response to 9/11 a reality.
Sincerely,
Lori Pandolfo.
______
9/11 Environmental Action,
New York, NY 10025,
June 25, 2010.
Hon. Tom Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Re: S.1334/H.R.847 ``The James Zadroga 9/11 Health & Compensation Act
of 2009''
Dear Chairman Harkin and Ranking Member Enzi: On behalf of 9/11
Environmental Action (EA), I write in strong support of S. 1334, the
James Zadroga 9/11 Health and Compensation Act of 2009, a bill that
would provide medical monitoring, treatment and compensation for
responders and survivors whose health has been impacted by the 2001
terrorist attack on the World Trade Center (WTC) and its aftermath.
We strongly urge you to pass this bill out of the Health,
Education, Labor, and Pensions Committee, with the strongest possible
protections for the survivors of
9/11. H.R. 847, the House of Representatives' version of this bill, has
now passed both the House Judiciary and Energy and Commerce Committees,
a significant step towards achieving justice for the survivors and
responders of 9/11.
As we know you recognize, 9/11 was an attack on our Nation that
targeted civilians, many of whom were exposed to toxic dust and smoke
from the collapse and burning of the WTC. In addition, along with many
9/11 responders, many people who lived, worked, or attended school in
Lower Manhattan at the time of the attacks have become ill as a result
of the Federal Government's false assurances that ``the air is safe''
and its failure to provide proper environmental cleanup. It is
therefore imperative that our Federal Government help to provide WTC-
specialized care for all whose health was harmed as a result of the WTC
disaster.
9/11 Environmental Action is the community-based organization of
residents, school parents and occupational safety and environmental
health advocates that formed in April 2002 to spearhead the downtown
community's fight for full disclosure of WTC hazards, and proper
testing and cleanup of WTC indoor contamination by the EPA. In
addition, 9/11 EA has long advocated for federally funded medical
monitoring and health care for everyone whose health was harmed by WTC
dust and smoke.
In the course of our work downtown, we can attest that in the weeks
and months after 9/11, residents, school parents and others were left
to struggle on their own to protect themselves and their children from
unprecedented toxic exposures, including hazards that had contaminated
homes, schools and offices. Moreover, as people became sick from those
exposures, they had no access to accurate environmental health
information, appropriate health guidance or proper medical evaluation
or care.
The ``Survivor Program'' based at the WTC EHC is the center of
excellence serving the health needs of non-responder survivors of the
9/11 attacks. The concentration of experience and expertise in tracking
and treating WTC conditions at WTC EHC has enabled this program to
achieve and maintain a standard of effectiveness that is impossible to
reproduce elsewhere. This excellence, combined with its reach into the
affected community, establishes the Center as by far offering the best
use of Federal 9/11 treatment dollars.
The Zadroga Act would guarantee 10 years of Federal funding to
specialized WTC-related medical programs. The continued availability of
specialized medical care at these programs from health professionals
who have developed expertise in treating 9/11-related illnesses is
critical.
We therefore especially ask that, as you consider S. 1334, that you
protect the ``Survivor Program,'' currently based at the WTC EHC, so
that it can continue to meet the needs of more than 4,700 residents,
area workers, and students, including people now residing in 23 States,
who survived 9/11 but who are now sick as a result of their WTC
exposures. Many survivors, including children, are now struggling to
recover their health, and others may develop WTC-related illnesses in
the future. They urgently need your help.
Nearly 9 years after the attacks, we urge you to help make a just
Federal health response to 9/11 a reality.
Sincerely,
Kimberly Flynn.
______
June 28, 2010.
Hon. Kirsten Gillibrand,
478 Russell Senate Office Building,
Washington, DC 20510.
Senator Gillibrand: The events of 9/11 caught everyone by surprise.
Men and women from all over the area, rushed in to help those who had
been impacted by the planes, the fires and the collapses. The workers
who stayed, those who spent days and weeks and months on the site of
the horror, have been and are continuing to show a variety of terrible
health symptoms from exposure to the site. These people did not
hesitate to help when they were needed, and stayed to show the world
that they believed in our country and the future of our way of life.
They are now being punished by the toxins they were exposed to for
their noble efforts.
My husband, Lt. Peter J. Farrenkopf, spent 30 years loving his job
with the FDNY, and on that horrible day, he was on duty at the Marine
Division at the Brooklyn Navy Yard, and with the fire boats was one of
the first responders. He continued to return to the site for weeks.
there was not even a question about his being there, because in his
heart it was the right thing to do. He was diagnosed in July 2009 with
glio blastoma, a brain cancer which is like a freight train . . . very
fast and just impossible to stop. He was dead in 3 months. After
watching my dear husband become ill and die at the age of 56, I would
do anything to help people who find themselves in the same or a similar
position.
The fact that men and women from the tri-State area (and many
points elsewhere, remember how they kept coming??!!) are only NOW
becoming ill from the toxins released on that day is strong statement
that we need to continue to provide for these heroes. They were on the
front lines for our people, our city and our country, when it counted.
We canNOT allow the funds for their monitoring, diagnosis and
treatments be stopped. We must make sure our commitment to this cause
is for the long haul, and that the WIC 9/11 ZADROGA BILL is passed.
Thank you for your time.
Sincerely,
Janet Bellusci Farrenkopf,
Ulster Park, NY 12487.
______
Federal Law Enforcement Officers Association,
Lewisberry, PA 17739,
June 28, 2010.
Hon. Kirsten E. Gillibrand,
U.S. Senate,
Washington, DC 20510.
Dear Senator Gillibrand: As the National President of the 26,000
members of the Federal Law Enforcement Officers Association (FLEOA), as
well as your New York State constituent, I am writing to express our
members' sincere appreciation for your introducing the James Zadroga 9/
11 Health and Compensation Act of 2009. Our membership is unified in
its support for this important bill, and we are optimistic that you
will make all efforts to move this legislation forward.
FLEOA has met with numerous Members of Congress to support H.R.
847, and we are encouraged by its favorable vote out of full committee.
In working with our New York Coalition partners, in particular the
Sergeants Benevolent Association, we stand ready to educate any
reluctant members of the Senate on the importance of your bill. Our
message is clear: there are 50 stars on our flag, and an attack on one
of them is an attack on all of us.
In addition to those of us still working in New York, FLEOA has
numerous members who were first responders to Ground Zero and are
currently residing in other States. Indeed, this is a nationwide
problem, and with the passage of your bill, all first responders will
have access to medical screening and treatment. It is painfully clear
that the harmful toxins we were exposed to are finally taking their
lethal toll on our health. We are counting on you to champion our
cause, and we are prepared to support you with our full resources.
Please do not hesitate to contact me, or Andy Quinn, our Washington, DC
representative, at 202-680-0447.
Respectfully,
J. Adler,
National President.
______
Patricia Hess,
Stone Ridge, NY 12484,
June 26, 2010.
Hon. Kirsten Gillibrand,
478 Russell Senate Office Building,
Washington, DC 20510.
Dear Senator Gillibrand: I have a story that should be told, in
fact, that needs to be told. My name is Patricia Hess and I am a widow.
I lost my husband Robert Hess just 2 months ago. We had been married
for 18 years and we had four wonderful children together. Our daughter
Kimberly--17, our twin sons Robert & Brian--12, and our joyful youngest
Connor--9, were the pride and joy of Rob's life. The hole left by his
absence is still gapping and raw and I'm not sure how I will fill it.
Rob was a New York City Fireman for almost 25 years. He worked his
way up through the ranks, achieving the grade of Lieutenant. He loved
the FDNY. It was his second family and he was proud to serve the city
he had called home. I was the wife of a New York City Fireman and so I
was always prepared for the worst; that call in the middle of the
night, the knock on the door by men dressed in blue with somber faces.
It was a reality I dealt with, always prepared for the worse and
praying for the best each time I heard about a terrible blaze or a
fireman killed in the line of duty.
Rob responded on the morning of September 11, 2001. To be honest, I
had thanked God every day that he was not among the first on site or
our family would not have had him to love for all the years since that
horrible day. He arrived at Ground Zero just after the collapse of
Tower Two and remained on scene for the next 20 hours. He was there to
witness Building Seven crumble to the ground. We lost many fine people
that day, many friends, and Rob carried that loss with him in the
ensuing years.
For the next 2 months he worked in midtown Manhattan, riding on
Engine 26. This engine had been on site during the collapse of both
towers and was covered with a thick coat of dust and some debris. It
was miraculous that the driver of Engine 26 survived and was rescued.
Over the course of the first 2 weeks of Rob's tour in midtown, Engine
26 remained covered in the dust of the once grand World Trade Center.
He, like all the other proud and loyal FDNY members did not know that
this dust would later cause them much hardship; he only knew he had to
help.
When the World Trade Center Monitoring Program began, Rob, being a
prudent person, registered right away. Over the past 4 years he was
screened for any emerging health issues. He had semi-annual cat scans
of his lungs. In February 2010 when he went for the first of his two
annual scans it was discovered that he had a carcinoid tumor in his
right lung airway. On April 23 he went to NYU hospital to have it
removed, along with \2/3\ of his lung. We were told it was a fairly
routine surgery and had every confidence in the doctors and the
outcome. Four days after the surgery Rob began having difficulty
breathing. It was determined he had pneumonia and he was placed on a
respirator. On Sunday May 2, despite heroic efforts from the medical
team at NYU that went on for nearly 35 minutes, my husband died at 6:07
p.m. of coronary arrest. His death has been attributed to his service
during the response to the terrorist attacks on the World Trade Center.
I am writing to you to say that without the World Trade Center
Monitoring Program my husband would have likely died a horrible cancer-
related death, never understanding how 9/11 had impacted his health.
Rob was one of the fortunate ones, he acted quickly and he was able to
register to receive the screenings. Had he not, the tumor would have
grown and spread. It is sad to say that other first responders, as well
as residents from the neighborhoods surrounding Ground Zero, have not
been as fortunate to receive this kind of monitoring. It is also sad to
think that many who have become, or who will become ill, will never
know if the events of September 11th are the real culprit.
The James Zadroga 9/11 Health and Compensation Act of 2009 can help
ensure that these people--fathers, mothers, sons and daughters--are
given the same chance at life that my husband Robert Hess was. While
one can never really understand why someone survives or not after a
life altering surgery, the fact of the matter remains that the
monitoring program helped to identify the cancer and gave Rob a
fighting chance. Every first responder as well as the people who lived
and worked surrounded by a cloud of toxic dust, and every man and woman
who spent months doing cleanup at Ground Zero should be given this same
opportunity.
The James Zadroga 9/11 Health and Compensation Act will do exactly
that, provide screenings and treatments to those impacted and adversely
affected by the events of September 11, 2001. It will also help those
who suffer with the emotional and stress related problems that we often
see in soldiers who experience combat. I know of no one who experienced
first hand the World Trade Center's destruction that wouldn't say they
had been in a combat zone. As we protect our military, so too should we
protect all of our citizens.
My husband never hesitated to answer the call to duty, he served
with pride and honor. He valued what he did and he brought value to the
FDNY through his presence. My family is left with a void. My children
will not have their father at birthdays and graduations. Our holidays
will be less joyful without his booming laughter. My daughter will not
have her father to walk her down the isle on that so special day. And
me, well I will go to sleep at night with an empty space beside me and
an even emptier space in my heart.
Please Senator, for my family and all the others who might be
facing this terrible situation in the years to come, please pass the
James Zadroga 9/11 Health and Compensation Act.
Thank you,
Patricia Hess.
______
Jennifer McNamara,
Blue Point, New York 11715.
Thank you Senator Gillibrand, and all the co-sponsors of this bill
for giving me the opportunity to submit a statement today and for the
fight you have taken up on behalf of sick 9/11 Responders.
My name is Jennifer McNamara and I am the widow of FDNY Firefighter
John F. McNamara. On August 9, 2009, John, only 43 years old, died of
colon cancer. John worked over 500 hours at Ground Zero, had no genetic
predisposition to cancer, did not smoke, and drank only socially. He
was strong and in good health--just look at the pictures. When he was
diagnosed, we were expecting our first child, Jack, who is now 3\1/2\.
Upon diagnosis in June 2004, John's cancer was considered to be end
Stage 4. It had infiltrated other organs, and there was little chance
he would survive. John had no warning that he was sick--just sudden and
severe stomach pain one day. I firmly believe, as did John, that if his
health had been monitored, he would have had a chance at surviving the
cancer.
From almost the first moment he was diagnosed, John became an
advocate for other sick 9/11 Responders. He teamed up with John Feal
and also helped to found the NYC Firefighter Brotherhood Foundation. He
knew that without medical monitoring and medical assistance, many
people who responded on 9/11 and in the days after would get sick and
die. He knew many would be unable to afford the proper medical
treatment. He knew this because he met these people--ironworkers,
construction workers, private EMS workers; all who never knew their own
bodies had betrayed them until it was too late.
Until the day he died, no matter how sick he was, John advocated
for proper medical care for 9/11 Responders. He believed in the Zadroga
bill. He attended press conferences in the rain after chemo sessions,
allowed videos to be made of him in the hospital, traveled to
Washington, and talked to any reporter who asked.
John's message was clear--9/11 Responders need medical monitoring
and care; nobody else should die because of a late diagnosis or because
they can't pay for medications. I can't say it more clearly; this bill
must be passed before there are more widows like me and more children
without a parent.
I have taken up John's battle because I promised him on his
deathbed I would. I have taken up his battle because I must now be the
voice for my dead husband. I beg you to listen to the stories of sick
9/11 Responders. Understand the hell that they and their families go
through. Understand the heart-wrenching choices they may sometimes have
to make because they have no access to medical monitoring and care.
Most of all, understand that the fear you hear in their voices is real.
They have seen what happens to people who don't have medical monitoring
and care. Just as nobody in this country should go hungry, no 9/11
Responder should be sick or die because they didn't have medical
access.
Vote on this bill and pass it quickly, for there is little else you
can do to thank those Americans who, being told it was safe, toiled in
the weeks and months after 9/11. They took care of this country, now is
the time to take care of them.
Sincerely,
Jennifer K. McNamara.
[GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]
______
National Association of Police Organizations, Inc.,
Alexandria, VA 22314-3501,
June 24, 2010.
Hon. Kirsten E. Gillibrand,
U.S. Senate,
531 Dirksen Senate Office Building,
Washington, DC 20510.
Dear Senator Gillibrand: On behalf of the National Association of
Police Organizations (NAPO), representing 241,000 rank-and-file law
enforcement officers from across the United States, I would like to
advise you of our support for the ``James Zadroga 9/11 Health and
Compensation Act of 2009,'' S. 1334. This important legislation would
ensure that first responders and community workers who risked their
lives responding to the 9/11 terrorist attacks on the World Trade
Center (WTC) receive medical monitoring and treatment so they can
maintain, or regain, their good health.
Nearly 9 years after the attack on our Nation, we continue to mourn
the 84 Port Authority personnel, including 37 members of the Port
Authority Police Department, 23 New York City Police Department
officers, 11 New York State and Federal Law Enforcement Officers, 343
fire fighters, and over 2,200 civilians who lost their lives. While the
Nation remembers those we lost, those who responded to the WTC continue
to suffer from the physical and mental traumas endured that day and in
the days following. According to the Mount Sinai Medical Center study
on 9/11 health effects, 70 percent of the first responders at Ground
Zero suffer from chronic lung ailments.
As the health risks associated with exposure to the WTC site become
more manifest, it is imperative to ensure that workers in the rescue
and recovery effort are properly monitored and treated for exposure-
related diseases. By establishing the World Trade Center Health Program
within the National Institute for Occupational Safety and Health, S.
1334 would make certain that there is a federally funded program to
give medical monitoring and treatment to WTC responders, who were
exposed to the toxins at Ground Zero. Additionally, this legislation
would provide for research into conditions, such as cancers, that may
be related to the WTC site.
NAPO appreciates all you are doing to support those who have fallen
ill due to their response and subsequent exposure at the WTC. We look
forward to working with you to fight for the passage of this bill. If
you have any questions, please feel free to contact me, or NAPO's
Government Affairs Director, Andrea Mournighan, at (703) 549-0775.
Sincerely,
William J. Johnson,
Executive Director.
______
New York Committee for Occupational Safety and
Health (NYCOSH),
New York, NY 10038-3331,
June 25, 2010.
Senator Tom Harkin, Chairman,
U.S. Senate Committee on Health, Education, Labor, and Pensions,
428 Senate Dirksen Office Building,
Washington, DC 20510.
Senator Michael Enzi, Ranking Member,
U.S. Senate Committee on Health, Education, Labor, and Pensions,
428 Senate Dirksen Office Building,
Washington, DC 20510.
Re: S. 1334/H.R. 847, James Zadroga 9/11 Health and Compensation Act
of 2009
Dear Chairman Harkin and Ranking Member Enzi: We are writing in
support of S. 1334 which would provide medical monitoring, treatment,
and compensation to rescue and recovery workers as well as to local
workers and residents who are ill as a result of exposure to the toxic
substances released in the aftermath of the attack on the World Trade
Center on September 11, 2001.
Tens of thousands of workers responded to the emergency and were
exposed to a wide variety of toxic substances, including carcinogens,
as were additional thousands of people who lived, worked, and attended
schools in the area surrounding the World Trade Center. People were
exposed to WTC-derived toxic substances outdoors and indoors, on that
day and for uncounted months afterwards.
We strongly encourage you to pass this bill out of the Health,
Education, Labor, and Pensions Committee, with the strongest
protections possible for the survivors of 9/11. H.R. 847, the House of
Representatives' version of this bill, has passed both the House
Judiciary and Energy and Commerce committees, which are significant
steps towards achieving justice for the survivors and responders of 9/
11.
NYCOSH is a non-governmental membership organization representing
200 labor unions and over 350 safety and health activists and legal and
health professionals dedicated to the right of every worker to a safe
and healthful workplace. For 9 years, we have been working with workers
who worked on and under the pile at Ground Zero, workers who worked to
clean up the adjacent community, and residents whose health has been
adversely impacted as a result of their exposure to these toxic
substances. Clinically diagnosed conditions include lower and upper
respiratory illnesses, gastrointestinal problems, and psychological
trauma. We are also greatly concerned about the prospect of late-
emerging diseases such as cancers.
The Zadroga Act would guarantee 10 years of Federal funding to
specialized medical programs that provide the right kind of treatment
for the people who lived, worked or attended school in the area, as
well as to the responders who came to their rescue, for their 9/11-
related illnesses. The continued availability of medical care from
health professionals who have developed expertise in treating 9/11-
related illness is critical.
Passage of S. 1334 would provide on-going funding for the World
Trade Center Medical Monitoring and Treatment Program, the World Trade
Center Environmental Health Center, and the FDNY WTC Medical Monitoring
and Treatment Program, which have provided vital and expert services to
those who suffered toxic exposures after the attack on the World Trade
Center. We attest to the capabilities of these medical ``centers of
excellence'' to provide needed medical services to the affected
communities. We strongly support Federal funding over the long term for
these essential medical services.
Respectfully,
Joel Shufro, Ph.D.,
Executive Director, NYCOSH.
______
Organization of Staff Analysts,
New York, NY 10010,
June 25, 2010.
Hon. Tom Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Re: S. 1334/H.R. 847 ``The James Zadroga 9/11 Health & Compensation
Act of 2009''
Dear Chairman Harkin and Ranking Member Enzi: On behalf of the
Organization of Staff Analysts (OSA), I write in strong support of S.
1334, the James Zadroga 9/11 Health and Compensation Act of 2009, a
bill that would provide medical monitoring, treatment and compensation
for responders and survivors whose health has been impacted by the 2001
terrorist attack on the World Trade Center (WTC) and its aftermath.
We strongly urge you to pass this bill out of the Health,
Education, Labor, and Pensions Committee, with the strongest possible
protections for the survivors of
9/11. H.R. 847, the House of Representatives' version of this bill, has
now passed both the House Judiciary and Energy and Commerce Committees,
a significant step towards achieving justice for the survivors and
responders of 9/11.
Nearly 9 years after the attacks on the WTC, the Federal Government
has yet to make an appropriate long-term, consistent commitment to the
health care of responders and survivors.
As we know you recognize, 9/11 was an attack on our Nation that
targeted civilians. In addition, along with many 9/11 responders, many
New Yorkers have become ill as a result of the Federal Government's
false assurances that ``the air is safe'' and its failure to provide
proper environmental cleanup. It is therefore imperative that our
Federal Government provide WTC-specialized care for all whose health
was harmed as a result of the WTC disaster, responders and survivors
alike.
The Zadroga Act would guarantee 10 years of Federal funding to
specialized WTC-related medical programs. The continued availability of
specialized medical care at these programs from health professionals
who have developed expertise in treating 9/11-related illnesses is
critical.
OSA is a union representing 4,700 active and 1,500 retired
professionals in the public service, all of whom work in some capacity
for the city of New York in 1 of the more than 50 mayoral agencies or
in one of the city's affiliated employers, including the NYC Health &
Hospitals Corporation and the NYC Housing Authority.
The vast majority of our members perform central office functions
for their employers and, since the vast majority of city agency central
office locations are in Lower Manhattan, OSA members were exposed to
the dust cloud on the way to work, at work, or while evacuating from
work locations on 9/11. In addition, many were recalled to their work
locations in buildings downtown within weeks of 9/11, some as early as
a few days later. Some of our members were also enlisted in cleanup
activities, whether their own offices or, as in at least one case we've
been told of, volunteering to move dust-encrusted vehicles from Lower
Manhattan locations to piers on the Hudson River. And, they have also
suffered mental health impacts from the trauma of 9/11.
For these reasons, since 2001, we have taken an active interest in
the provision of adequate healthcare for those impacted by 9/11,
especially those who fall into the category of survivors, as do our
members as area workers.
We therefore especially ask that you protect the ``Survivor
Program,'' currently based at the WTC Environmental Health Center (WTC
EHC), so that it can continue to meet the needs of more than 4,700
residents, area workers, and students, including people now residing in
23 States, who survived 9/11 but who are now sick as a result of their
WTC exposures. Many survivors, including children, are now struggling
to recover their health, and others may develop WTC-related illnesses
in the future. They urgently need your help.
OSA has participated in the WTC EHC's Community Advisory Committee
since its inception. It is especially important to remember that the
fact that a concentrated group of affected patients is being seen in
one program facilitates the identification and treatment of 9/11-
related illnesses and provides a special base of knowledge not
duplicated elsewhere, offering a window on the health conditions
suffered by those in the survivor community and insights on the unmet
health and mental health needs of these populations.
OSA therefore encourages you to do all you can to ensure that this
important legislation passes your committee, the Senate as a whole and
is brought to President Obama for signature.
Nearly 9 years after the attacks, we urge you to help make a just
Federal health response to 9/11 a reality.
Sincerely,
Robert Spencer,
Director of Media Services and Labor Co-Chair,
Community Advisory Committee,
World Trade Center Environmental Health Center.
______
Lori Halpern Pandolfo,
Brooklyn, NY 11218-4314,
June 27, 2010.
Re: S. 1334/H.R. 847, the ``James Zadroga 9/11 Health and Compensation
Act of 2009''
Dear Chairman Harkin and Ranking Member Enzi: As a parent of an
affected Stuyvesant HS Alumna, and former PA co-president along with
Linda Lam, I felt it my duty to speak not only on behalf of Concerned
Stuyvesant Community, but also on behalf of myself in this matter here
today. I have remained active by attending meetings and maintaining
membership on community advisory to the NYC Department of Health WTC
Health Registry studies and activities. With that participation, I
gained knowledge of the programs and the needs of affected students,
residents and workers.
My own daughter is a cancer survivor who escaped the area along
with her classmates during one of her first days of high school and was
returned to attend school in the area, much too soon, and continuously,
after only a short 3-week break with false assurance that the school
was cleaned properly and the area was safe for health. It turned out
differently for her and all other local students, including BMCC, a
college nearby. As you can easily imagine, I am overly concerned about
health, having experienced the turmoil and anguish caused by life
threatening highly aggressive pediatric cancer treatment of my young
child, prior to the events of 9/11. Having been exposed to any sort of
toxins still is a tremendous source of anxiety to me and my family.
That is why monitoring and treatment, available to all those affected
by 9/11 is of paramount importance to me. Both the organization I
represent on the community advisories and I myself, support the
survivor treatment programs to be funded by the proposed Zadroga bill.
This group is especially vulnerable to being overlooked as they
were adolescents and are now young adults. While their exposures should
be considered within the pediatric guidelines, their care and
monitoring happen as young adults--without specialized attention to
this group, the link to 9/11 can easily be lost over even the short 8
years already passed. It bears repeating that ``they don't know what
they don't know.'' If these students have used denial as an effective
healthy tool to move forward from this experience, they may not, and
most importantly, their doctors will not, know about associating
illnesses that crop up over a lifetime with their exposures in this
event if there is no real data gathered or disseminated.
Adults are more likely to continue care under the original/same
practitioners they were seeing at the time of the event, while these
students will be sure NOT TO since they age/aged out of the care of
their original pediatricians. This loss of coordination may lead to
misdiagnoses and improper care in our population, especially over the
longer term. I am hoping and believe that the programs being funded
will capture this transition and account for it at every point of
change, leading to better coordination of care.
The 10-year limit and limit on the number of treatment slots
remains a concern while the bill moves forward and is reconciled.
I appreciate your help in strengthening and supporting the bill as
it evolves to become law and will serve our community.
Thank you for the opportunity to express my views.
Very truly yours,
Lori Pandolfo.
______
Port Authority Police Benevolent Association, Inc.,
Englewood Cliffs, NJ 07632-1805,
June 28, 2010.
Hon. Kirsten E. Gillibrand,
U.S. Senate,
531 Dirksen Senate Office Building,
Washington, DC 20510.
Dear Senator Gillibrand: On behalf of the 1,558 members of the Port
Authority Police Benevolent Association, I would like to advise you of
our support for the ``James Zadroga 9/11 Health and Compensation Act of
2009,'' S. 1334. This important legislation would ensure that first
responders and community workers who risked their lives responding to
the 9/11 terrorist attacks on the World Trade Center (WTC) receive
medical monitoring and treatment so they can maintain, or regain, their
good health.
As a first responder to the World Trade Center myself, I know
firsthand the conditions that we were exposed to as we worked on the
pile, day after day, week after week and month after month. I have
personally suffered health impacts and it seems like another one of my
members develops a new health condition clearly related to our work at
the site every week.
As the health risks associated with exposure to the WTC site become
more manifest, it is imperative to ensure that workers in the rescue
and recovery effort are properly monitored and treated for exposure-
related diseases. By establishing the World Trade Center Health Program
within the National Institute for Occupational Safety and Health, S.
1334 would make certain that there is a federally funded program to
give medical monitoring and treatment to WTC responders, who were
exposed to the toxins at Ground Zero. Additionally, this legislation
would provide for research into conditions, such as cancers, that may
be related to the WTC site.
Again, on behalf of all of our members, I thank you for supporting
this bill to provide relief to our members who are suffering as a
result of their work in the rescue effort and cleanup of the WTC site.
If there is anything that we can do to support this effort, please feel
free to contact me at (201) 871-2100.
Very truly yours,
Paul Nunziato,
President.
______
Public Employees Federation,
AFL-CIO Division 199,
New York, NY 10008-1212,
June 25, 2010.
Hon. Tom Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Re: S. 1334/H.R. 847, the ``James Zadroga 9/11 Health and Compensation
Act of 2009''
Dear Chairman Harkin and Ranking Member Enzi: I am writing to state
my division's strong support for S. 1334, the ``James Zadroga 9/11
Health and Compensation Act of 2009,'' that would provide medical
monitoring, treatment and compensation for responders and survivors
whose health has been impacted by the 2001 terrorist attack on the
World Trade Center (WTC) and its aftermath.
We strongly encourage you to pass this bill out of the Health,
Education, Labor, and Pensions Committee, with the strongest
protections possible for the survivors of 9/11. H.R. 847, the House of
Representatives version of this bill, has passed both the House
Judiciary and Energy and Commerce Committees, which is a significant
step towards achieving justice for the survivors and responders of 9/
11.
9/11 was an attack on our Nation that targeted civilians. Along
with many 9/11 responders, many people who lived, worked, or attended
school in Lower Manhattan at the time of the attacks have become ill as
a result of the Federal Government's false assurances that ``the air is
safe,'' and its failure to provide proper environmental cleanup. It is
therefore imperative that our Federal Government help to provide WTC-
specialized care for all whose health was harmed as a result of the WTC
disaster.
The Zadroga Act would guarantee 10 years of Federal funding to
specialized medical programs that provide the right kind of treatment
for the people who lived, worked or attended school in the area, as
well as the heroic responders who came to their rescue, for their 9/11-
related illnesses. The continued availability of medical care from
health professionals who have developed expertise in treating 9/11-
related illness is critical.
My union, the New York State Public Employees Federation, AFL-CIO,
is the union that represents the 59,000 professional, scientific, and
technical employees of the government of New York State. About 500 of
our members came from all over the State and responded to Ground Zero
and the aftermath of 9/11. Several thousand of our members work in
offices adjacent to or within walking distance of the World Trade
Center site. My union is one of many that represent non-responder State
workers whose health has been and continues to be negatively impacted
by the events of 9/11. Most of the members of my division work at 90
Church Street, an office building next to Ground Zero.
As members of the Lower Manhattan community, we especially ask that
you protect the ``Survivor Program,'' currently based at the World
Trade Center Environmental Health Center (WTC EHC), so that it can
continue to meet the needs of the more than 4,700 residents, area
workers, and students, including people now residing in 23 States, who
survived 9/11 but who are now sick as a result of their WTC exposures.
Many survivors, including children, are now struggling to recover their
health, and others may develop WTC-related illnesses in the future.
They urgently need your help.
Nearly 9 years after the attacks, we urge you to help make a just
Federal health response to 9/11 a reality.
Thank you.
Very truly yours,
Ilanye Longjohn,
Council Leader, PEF Division 199.
______
Partnership for New York City,
June 28, 2010.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Dear Senator Enzi: On behalf of New York City's business community,
we are writing to urge your favorable action on S. 1334, the James
Zadroga 9/11 Health and Compensation Act of 2009. This legislation
would provide a comprehensive long-term solution to address the serious
health problems that WTC responders and survivors are facing as a
result of 9/11 hazardous exposures.
The Partnership is a nonprofit organization that represents
international business leaders who are headquartered in the New York
City metropolitan region. Our members are responsible for 7 million
jobs throughout the country and contribute more than $740 billion to
the national GDP.
The terrorist attack of 9/11 was an unprecedented act of war
against this country, targeting both our economic and political
capitals. The impact for those who were directly exposed to the attack
or participated in emergency response and recovery is still
reverberating, with tens of thousands of Americans suffering physical
and mental consequences.
In November 2001, we issued a study that quantified the immediate
cost of the attack for New York City, in economic terms, at $83
billion. The Federal Government and the insurance industry combined to
cover most of these losses, allowing for the recovery and rebuilding of
the areas of Lower Manhattan that were destroyed or damaged in the
attack. New York City was grateful that the American public recognized
that this was a national challenge that required and deserved Federal
assistance.
Tragically, there are significant additional costs that continue to
mount as a result of the direct consequences of the attack on the
physical and mental health of rescue workers, construction crews, and
people who lived and worked in the area that was contaminated as a
result of the attack. Our Partnership offices are a few blocks from the
World Trade Center and we, like most New Yorkers, were committed to
reopening America's financial district quickly so that the country
would not suffer the economic blow that the terrorists hoped to
inflict. At the time, we were not aware of how toxic the residue of the
attack would be.
People from all over the country who participated in rescue,
recovery and early rebuilding efforts were exposed to contaminants that
have and will result in premature death and lives of suffering. We urge
you to enact S. 1334 and insure that victims of the fallout from the
attack will be properly monitored and receive the best health care that
this country can deliver.
Sincerely,
Kathryn Wylde,
President & CEO.
______
Valery Roberts,
Mahopac, NY 10541,
June 25, 2010.
Hon. Kirsten Gillibrand,
U.S. Senate,
Washington, DC 20510.
Dear Senator Gillibrand, My name is Valery Roberts. My husband
Tommy was a member of The New York City Fire Department for 29 years.
He worked in Washington Heights and Harlem. The Fire Department was his
life and he looked forward to every tour. He said ``It was the best job
in the world.'' When 9/11 happened he worked tirelessly at the site
with his men never taking his own health into consideration. The
trauma, depression, sadness and loss of lives were overwhelming but
still they kept searching. He lost many friends that day.
In January 2007 Tommy retired from the department he loved and
looked forward to a long and happy retirement. We looked to the future
to enjoy and do all the things we put on hold when he was working. He
kept his hand on the job by becoming a peer counselor to help and guide
men and women on the job.
In September 2008 Tommy was diagnosed with esophageal cancer with
metastasis to the lymph nodes and liver. Our world was shattered. This
was a man who was never ill, ran two marathons and had NO history of
cancer in his family. His parents are 90 and 91 with no major health
concerns. He went for his physicals annually and was always given a
clean bill of health. His last physical was April 2008. The prognosis
was with palliative treatment, we could go on indefinitely. We were
thankful for the health care we had knowing that he would receive the
best care and would not have to worry about ``how are we going to pay
for this.'' The effect of his illness on our family was daily. We have
three daughters 32, 27, and 26 who faced the prospect of loosing their
father. The father who was always there for them, who they idolized and
loved with all their heart. For me the thought of not having the love
of my life by my side, not realizing our hopes and dreams was
devastating. His illness took its toll. The tests and treatments were
grueling but he faced them with dignity praying for a cure.
Tommy lost his battle August 12, 2009. He was 58. Our family's
hearts are broken and dreams shattered. He will never see his girls get
married, never know his grandchildren and never enjoy the retirement he
worked so hard for. My life partner is gone and my days are empty.
If not for the health plan coverage we had, our days would have
been filled with worry as to how to pay for his care instead of
focusing on enjoying what time we had left and treasuring everyday. The
costs would have been prohibitive and insurmountable. That is why I
respectfully ask you to vote for and pass the 9/11 Health and
Compensation bill, so that every other family faced with a devastating
illness receives the best medical care possible and spend every minute
without worrying how to pay for it.
Respectfully,
Valery Roberts.
______
Southbridge Towers Parent and Youth Association,
Inc.,
New York, NY 10038,
June 24, 2010.
Hon. Tom Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions,
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions, U.S. Senate,
Washington, DC 20510.
Re: S. 1334/H.R. 847, the ``James Zadroga 9/11 Health and Compensation
Act of 2009''
Dear Chairman Harkin and Ranking Member Enzi: On behalf of South
Bridge Parents and Youth Association, I am writing to express our full
and continued support of the H.R. 847 bill, S. 1334 and the ``Survivor
Program.'' The World Trade Center Environmental Health Center (WTC
EHC). We appreciate your past and future support of long-term,
consistent Federal funding so that the Center can meet the growing
health needs of Lower Manhattan residents, families and children,
exposed to toxic smoke and dust on and after 9/11.
We strongly encourage you to pass this bill out of the Health,
Education, Labor, and Pensions Committee, with the strongest
protections possible for the survivors of 9/11. H.R. 847, the House of
Representatives' version of this bill, has passed both the House
Judiciary and Energy and Commerce committees, which is a significant
step towards achieving justice for the survivors and responders of 9/
11.
South Bridge Parent and Youth Association is a not-for-profit
advocacy organization that serves the many families residing at
Southbridge Towers, a nine-building complex with 1,690 apartments, and
also families in the adjacent Seaport and Financial District
neighborhoods. Our mission is ``To Enhance the Childhood Experience and
Maximize the Quality of Life for All,'' and our focus is on issues and
events centered around education, health, community and recreation that
directly affect our community.
Many New Yorkers (students, residents, office workers and
responders) have become ill as a result of the Federal Government's
failure to provide proper environmental cleanup and its false
assurances that ``the air is safe'' upon the attack on our Nation's
innocent civilians. It is therefore imperative that our Federal
Government provide WTC-specialized care for all whose health was harmed
as a result of the WTC disaster, responders and survivors alike.
9/11 had a massive, lasting impact on our area. As the terrifying
events unfolded, the first thought for many of us was how to get to our
children. Many of the kids in our area, as well as adults, arrived back
home coated in white dust. Because there was no real evacuation in our
neighborhood, most residents remained in our buildings, which had been
totally engulfed in the dust clouds when the Towers collapsed. We had
no power, water or phones but at daybreak on September 12th when the
sun shone brightly again, we could see that the interior of our home
was also covered in that same thick white dust. Health officials soon
told us that it was safe to remove. With no truthful information on the
dangers of inhaling that dust, we, like countless numbers of residents,
embarked on our own cleanup.
The experience of my own family was typical. In the days
immediately following 9/11, I myself cleaned our apartment, along with
my elderly father, who vacuumed up what we now know was toxic WTC dust,
without the right kind of vacuum filter. At 8 months pregnant with my
third child, I got down on my hands and knees and pulled up the
contaminated carpet in my children's room.
It was not until 2003 that the Environmental Protection Agency
(EPA) offered residents a cleanup on a voluntary basis. Many people did
not even know any cleanup was happening because the program was so
poorly publicized. And the cleanup was so late in coming and so
haphazard, that participation was low. My apartment's ``professional''
EPA clean up didn't occur until March 2003. Everyone knows that just
cleaning a fraction of apartments in a building means that it probably
won't take long for recontamination to occur. The whole building
cleanups we all needed to clear out the toxic dust once and for all
were never carried out.
After being forced to deal with the WTC environmental fallout
ourselves, we found that we were likewise on our own to struggle with
the health effects. Speaking for my own family, we had to search long
and hard to find specialists, including a pediatric pulmonologist, who
could correctly diagnose and treat the health problems we developed as
the result of our WTC-related exposures.
All three of my children, including the baby born just 1 month
after 9/11, were prescribed daily treatments including Zyrtec, Allegra,
Singulair, Asmonex, Albu-
terol, Rhinocort, Q-Var and Advair for allergy, sinusitis and asthma-
related symptoms. Additionally, all three have been prescribed Prevacid
for GERD. We keep steroids, a nebulizer and associated medications on
hand in the event that any of the children should reach the red level
of their ``asthma action plans.'' They miss more school than average
healthy children in their age groups. At 5 years old, my youngest knew
how to load the nebulizer with treatment and to administer that
treatment to herself.
For years, I struggled to shoulder the costs for my family's 9/11
health care, which averaged $840 a month, on top of what our insurance
covered. Like so many others in our neighborhood, my family is
staggering under the burden of WTC medical expenses, for which the
Federal Government should bear responsibility.
Those who are sick as the result of 9/11 need and are entitled to
the right kind of care. As the Center of Excellence for non-responders,
the WTC EHC provides optimum, specialized care with a commitment to
continue to meet the medical needs of the community as those evolve.
Because its patients are being closely tracked over time, any new
patterns of disease will be detected, making possible the early
intervention needed to maximize the chances of recovery. This effort
requires and must receive sustained Federal support.
Moreover, early detection is crucial when it comes to children, who
are especially vulnerable to the effects of environmental pollutants,
and who may develop different health problems than adults. Thousands
and thousands of children, including very young children, were exposed
to WTC smoke and dust in their homes, schools and playgrounds--wherever
they turned. Therefore it is critical that the Bellevue WTC Pediatric
Program receive the funding it needs in order to meet the needs of
affected children, now and going forward.
Our community has the strongest possible stake in the preservation
and expansion of the WTC EHC so that it will always be there for our
children, our families and our neighbors. We wish to thank you for all
your efforts to ensure that the people of Lower Manhattan, as well as
all the brave responders, get the help they need to recover from 9/11.
Sincerely,
Mariama James,
Chairwoman.
______
105 Duane Street Residents Association,
June 25, 2010.
Hon. Tom Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Re: S. 1334/H.R. 847, the ``James Zadroga 9/11 Health and Compensation
Act of 2009''
Dear Chairman Harkin and Ranking Member Enzi: I am writing on
behalf of 105 Duane Street Residents Association to state our strong
support for S. 1334, the ``James Zadroga 9/11 Health and Compensation
Act of 2009,'' that would provide medical monitoring, treatment and
compensation for responders and survivors whose health has been
impacted by the 2001 terrorist attack on the World Trade Center (WTC)
and its aftermath.
We strongly encourage you to pass this bill out of the Health,
Education, Labor, and Pensions Committee, with the strongest
protections possible for the survivors of 9/11. H.R. 847, the House of
Representatives' version of this bill, has passed both the House
Judiciary and Energy and Commerce Committees, which is a significant
step towards achieving justice for the survivors and responders of 9/
11.
Our building is a 52-story residential high rise located seven
blocks north of the World Trade Center site. On 9/11 toxic dust from
the collapsing towers entered our homes through windows and through the
ventilation system. In the months following the attack, smoke-borne
contaminants from the fires that burned at the World Trade Center site
polluted the air and continued to enter our homes. The air smelled bad
and the dust made us cough but the Government assured us that our homes
were safe and that we would suffer no long-term health effects.
Yet in the almost 9 years that have passed since the attack on the
World Trade Center, it has become clear that many of the people who
lived and worked in the surrounding communities have developed long-
term respiratory and other health effects as a result of exposure to
World Trade Center dust, fumes, and smoke. In the months and years
following the attacks, as more and more WTC-impacted residents and
workers required medical care, we found that our illnesses were often
not properly diagnosed or treated by our physicians. We received
antibiotics for irritant-
induced bronchitis, or inhalers for breathing problems that required
additional therapies. It was not until the WTC Environmental Health
Center opened in 2007 that residents and local workers who survived the
attacks could receive specialized and effective medical care from a
team of physicians who understood the range and complexity of the
physical health effects we incurred as a result of our exposures.
As we know you recognize, the attack on the World Trade Center was
an attack on our Nation that targeted civilians. It is therefore
imperative that our Federal Government help to provide WTC-specialized
care for all whose health was harmed as a result of the WTC disaster.
The Zadroga Act would guarantee 10 years of Federal funding to
specialized medical programs that provide the right kind of treatment
for the people who lived, worked or attended school in the area, as
well as the heroic responders who came to their rescue, for their 9/11-
related illnesses. The continued availability of medical care from
health professionals who have developed expertise in treating 9/11-
related illness is critical.
As residents of Lower Manhattan, we especially ask that you protect
the ``Survivor Program,'' currently based at the World Trade Center
Environmental Health Center (WTC EHC), so that it can continue to meet
the needs of the more than 4,700 residents, area workers, and students,
including people now residing in 23 States, who survived 9/11 but who
are now sick as a result of their WTC exposures. Many survivors,
including children, are now struggling to recover their health, and
others may develop WTC-related illnesses in the future. They urgently
need your help.
Nearly 9 years after the attacks, we urge you to help make a just
Federal health response to 9/11 a reality.
Sincerely,
Jo Polett,
105 Duane Street Residents Association.
______
StuyHealth,
June 29, 2010.
Re: S. 1334/H.R. 847, the ``James Zadroga 9/11 Health and Compensation
Act of 2009''
Dear Chairman Harkin and Ranking Member Enzi, On behalf of
StuyHealth, I am writing to state my organization's strong support for
S. 1334, the ``James Zadroga 9/11 Health and Compensation Act of
2009,'' that would provide medical monitoring, treatment and
compensation for responders and survivors whose health has been
impacted by the 2001 terrorist attack on the World Trade Center (WTC)
and its aftermath.
We strongly encourage you to pass this bill out of the Health,
Education, Labor, and Pensions Committee, with the strongest
protections possible for the survivors of 9/11. H.R. 847, the House of
Representatives' version of this bill, has passed both the House
Judiciary and Energy and Commerce Committees, which is a significant
step towards achieving justice for the survivors and responders of 9/
11.
As we know you recognize, 9/11 was an attack on our Nation that
targeted civilians. In addition, along with many 9/11 responders, many
New Yorkers have become ill as a result of the Federal Government's
false assurances that ``the air is safe'' and its failure to provide
proper environmental cleanup. It is therefore imperative that our
Federal Government provide WTC-specialized care for all whose health
was harmed as a result of the WTC disaster, responders and survivors
alike.
The Zadroga Act would guarantee 10 years of Federal funding to
specialized medical programs that provide the right kind of treatment
for the 9/11-related illnesses of not only the heroic responders, but
for people who lived, worked or, like ourselves, attended school in the
area. The continued availability of medical care from health
professionals who have developed expertise in treating 9/11-related
illness is critical.
Our organization represents former students who attended school in
Lower Manhattan on 9/11 and during the World Trade Center clean-up. As
representatives of over 400 students who attended school just blocks
from the WTC site, we especially ask that you protect the ``Survivor
Program,'' currently based at the World Trade Center Environmental
Health Center (WTC EHC), so that it can continue to meet the needs of
the more than 4,700 residents, area workers, and students, including
people now residing in 23 States, who survived 9/11 but who are now
sick as a result of their WTC exposures. Many survivors, including
children and young adults like ourselves, are now struggling to recover
their health, and others may develop WTC-related illnesses in the
future. We urgently need your help.
Nearly 9 years after the attacks, we urge you to help make a just
Federal health response to 9/11 a reality.
Sincerely,
Lila Nordstrom,
Founder.
______
International Union, United Automobile, Aerospace &
Agricultural Implement Workers of America + UAW,
Washington, DC 20036,
June 29, 2010.
Dear Senator: On behalf of over 1 million active and retired
members, the UAW urges you to support and cosponsor the James Zadroga
9/11 Health and Compensation Act of 2009 (S. 1334), sponsored by
Senator Gillibrand. This bipartisan bill would provide medical
monitoring, treatment, and compensation to emergency responders,
recovery, and clean-up workers, as well as to community members
suffering serious illnesses as a result of hazardous exposures from the
9/11 terrorist attacks. The companion bill (H.R. 847) has been marked
up in two House Committees, and the House is expected to take up this
legislation shortly.
Tens of thousands of workers rushed to the World Trade Center (WTC)
site to assist in rescue and recovery operations following the 9/11
attacks. At the site, they were exposed to a toxic mix of dust and
fumes, as were residents and others near Ground Zero. Now thousands of
these individuals are suffering from serious respiratory diseases and
other severe health problems. S. 1334 would provide a comprehensive,
long-term solution to these health problems by establishing the World
Trade Center Health Program, under the direction of the National
Institute for Occupational Safety and Health (NIOSH).
The program would build on the current medical programs to provide
high quality care through the Clinical Centers of Excellence in New
York City. Additional clinical centers would be designated to provide
monitoring and treatment for those who reside outside the New York
area, but whose medical conditions are due to exposure at the WTC site.
Individuals who meet the eligibility criteria would receive monitoring
and medical treatment for WTC-related health conditions at no cost. In
addition, S. 1334 would reopen the September 11th Victim Compensation
Fund to provide compensation for economic damages and loss for those
who were not previously eligible or became sick after the original
December 22, 2003 deadline, with awards determined by a Special Master.
To control costs, the bill caps the number of program participants
who can be added. The program may take on up to 15,000 additional
responders and 15,000 additional community members. The bill
establishes the patient's health insurance as the primary payer for non
work-related conditions and offsets costs for work-related conditions
through workers' compensation payments. In addition, it provides for
cost sharing by the city of New York. Moreover, the bill would limit
the overall legal liability for construction contractors and the city
of New York for 9/11-related health claims to the funds available in
the WTC Captive Insurance Company and coverage under liability
insurance.
The 9/11 attacks were attacks on our entire Nation. Compelled by a
moral obligation, the United States has acted to compensate and care
for the injured and the surviving family members of those who were
killed. The UAW believes the same obligation should now lead Congress
to meet the needs of 9/11 rescue, recovery, and clean-up workers, as
well as area residents who became ill because of their exposure to WTC
hazards. We urge you to support and cosponsor the James Zadroga 9/11
Health and Compensation Act of 2009 (S. 1334).
Sincerely yours,
Barbara Somson,
Legislative Director.
______
Mary C. Vaughan,
Mahopac, NY 10541,
June 25, 2010.
To: Senator Kirsten Gillibrand: My husband, Battalion Chief John J.
Vaughan, retired from the New York City Fire Department in January 2003
after working for 35 years. He loved his job, served proudly and never
waivered when he was called for duty. The devastating events that
occurred on September 11, 2001 did not change his determination or deep
responsibility he felt towards his co-workers and people of New York
City. John worked tirelessly (as well as many other members of the
FDNY) during the rescue and recovery effort. He spent over 6 straight
months at the World Trade Center site. My husband unfortunately passed
away on October 26, 2009. After working 35 years for the NYC Fire
Department, he was only able to enjoy his retirement for 5 short years.
John was always physically active during both his career and during
retirement. During his career, John was instrumental in revitalizing
the FDNY Boxing team. He, trained, boxed and sparred with the team as
well as the countless hours behind the scenes organizing and planning
upcoming events. His commitment to being physically fit continued into
his retirement. He always found time to walk daily and ride his bicycle
over 50 miles per week. John was rarely sick, never spent one day in a
hospital and never, ever complained.
His life changed dramatically in January 2009 when he was diagnosed
with Mesothelioma. John went for his annual FDNY World Trade Center
Medical at the Bureau of Health Services. He was told by Fire
Department doctors to follow up with further evaluation because of
extreme irregularities in his left lung. John was never the same. He
was now extremely fatigued during the day. He was no longer able to
ride his bicycle. Although he fought to keep walking right into the
latter stages of his illness, I know it was only out of his sheer grit
and determination to prove to himself (and me) that if he went down, he
would go down fighting. I mentioned my husband never, ever complained.
After serving 2 years in Vietnam as a paratrooper in the Long Range
Reconnaissance Patrol, I guess nothing else he would encounter in his
life would compare. However, this illness from 9/11 was too much for
him to bear. He spent his days curled up on the couch, sometimes in too
much pain to even feed himself. His day mostly consisted of moving from
place to place in the house, trying to find a position that would
alleviate even some of his pain. He lost over 80 lbs of body weight.
John went from a physically fit solid man to a thin, frail, dying man.
We all know the effects of lung cancer are not pretty. Nobody should
have to watch another family member waste away knowing that there is no
hope of recovery, only death. My husband John is survived by myself,
two daughters, Mary and Jo-Ann, his son John (who is also a Battalion
Chief in the FDNY that I fear may also become physically disabled from
his exposure during 9/11), his daughter in law, Janine, and his
granddaughter of 15 months, Tara. He is thought about and missed every
day.
I write this letter to you, Senator Gillibrand, so that other
members of the FDNY do not need to suffer the way my family already
has. I know that if my husband had the choice, he would not have
changed one thing he did during and after the events of 9/11. He
served, he did what was expected of him, and would not have hesitated
if called to do it again. That's the way he was. I sincerely request
that you help pass the ``9/11 Health and Compensation Act" to protect
those who have sworn to protect others. Thank you.
Sincerely,
Mary C. Vaughan.
______
World Trade Center Residents Coalition (WTCRC),
June 28, 2010.
Hon. Tom Harkin, Chairman,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Hon. Michael Enzi, Ranking Member,
Committee on Health, Education, Labor, and Pensions (HELP),
U.S. Senate,
Washington, DC 20510.
Dear Chairman Harkin and Ranking Member Enzi, We the WTCRC, fully
support S. 1334, the ``James Zadroga 9/11 Health and Compensation Act
of 2009'' that would provide medical monitoring, treatment and
compensation for responders and survivors whose health has been
impacted by the 2001 terrorist attack on the World Trade Center (WTC)
and its aftermath.
We strongly encourage you to pass this bill out of the Health,
Education, Labor, and Pensions Committee considering H.R. 847 bill that
was passed by the House of Representatives Judiciary and Energy and
Commerce committees. The Zadroga Act would guarantee 10 years of
Federal funding to specialized medical programs to care for all whose
health was harmed as a result of the WTC disaster.
9/11 was an attack on our Nation, targeting civilians. Along with
9/11 responders, people who lived, worked, or attended schools in Lower
Manhattan have become ill as a result of the Federal Government's false
assurances that ``the air is safe'' and its failure to provide proper
environmental cleanup. We believe that the Federal Government has a
responsibility to fund WTC specialized care to help all of those
affected. It is the right and honorable thing to do!
WTCRC--World Trade Center Residents Coalition is a grass roots non-
sectarian humanitarian organization founded in the aftermath of 9/11 in
Lower Manhattan. Our umbrella organization dealt with issues of access,
landlords, cleanup and now health and downtown rebuilding. We reach out
via our list server to around 30,000 downtown Manhattan residents
directly and through various tenant associations, condominium boards
and other resident groups. We collaborate on community events and work
closely with downtown environmental activist groups and 9/11 health-
related groups. We strove to help protect the community responders and
non-responders from contaminants, campaigning for proper 9/11 cleanup
and now residents, workers and student monitoring, on-going studies and
treatment programs. We advocate for 9/11 medical centers of excellence
where exposure data can be collected and the best treatment regimes
administered. We strongly support cleanup and recovery worker issues
and the families of our bravest, who laid down their lives to save
others. We embody the spirit of giving back, protecting our community,
and also helping others less fortunate.
WTCRC is a founding member organization of the WTC Environmental
Health Center Community Advisory Committee (WTC EHC CAC) and its
members are active participants. We are also active members of the
Community Advisory Board to the WTC Health Registry, and provide
residential input and guidance into the Department of Health's In-Depth
Respiratory Study and research of WTC Health Effects based on the
Health Registry cohort. Invited onto the CAC, which advises on the
implementation of the World Trade Center health program for residents,
we actively supported the campaign to expand the Bellevue WTC Program
to two additional sites. Dr. Reibman's team has been key, from the
beginning they have been the only experts researching, documenting and
treating the complex interactions of 9/11 health effects in the
downtown resident population. Before the creation of the WTC EHC,
residents with no or limited access to private health care had nowhere
else to turn to for help. Even those who had access to good private
health care were misdiagnosed and did not receive appropriate
treatment.
Many residents reported back to us that their physicians baffled by
their complex symptoms, did not make the 9/11 connection. There are
residents who got sick after 9/11 either caught in the dust cloud,
returning to contaminated apartments, breathing the stench from the
burning fires or the dusty air, while the recovery program was in full
swing. Some of those got sick months or even years later from chronic
indoor exposures, the EPA clean and test programs were wholly
inadequate! Many felt like lab rats being fed a toxic daily gumbo of
contaminants, while government agencies that should have protected us
stated the air was safe! Some residents are still in denial about their
health issues, some avoid discussing their WTC-related symptoms with
their doctors fearful that they might get labeled by their insurance
carriers as 9/11 liabilities. All affected need to know there is
somewhere they can go to get treated with the most knowledgeable
physicians in the field, safe from reprisals. They need and are
entitled to the same quality of treatment that is offered at the Mount
Sinai Center--the WTC EHC provides this!
The WTC EHC has our full support to treat the 9/11 unmet health
needs in our communities. The WTC Clinics are trusted 9/11 centers of
excellence from their long-standing community relationships. The
current patient population of >4,700 is growing on a daily basis and is
increasing as the advertising and outreach program continues. WTC EHC
needs to be federally funded to continue to track and treat their
current patients and to allow service expansion to include future new
patients and treatment specialties as the need arises. Regardless of
patients ability to pay, the best expert medical and mental health
should be offered for 9/11-exposed responders, residents, students and
workers who were victims of this horrific terrorist attack on our
Nation. The WTC EHC, where an established treatment program provides
all services under one roof, where patients are tracked through the
program and treatment protocols are revised as needed, we believe is
the most cost-effective means to provide the best care now and in the
future.
We are a very diverse community united in our commitment to this
legislation. We call on Congress 9 years after the attacks to make a
just Federal health response to 9/11 a reality. Let's do the right
thing. Let's provide a brighter future for all those that were exposed
on 9/11. The horrific events of 9/11 bonded us together--we will never
forget, we stand tall, risen from the ashes, hopeful but guarded about
a brighter future. In these very difficult times there are funding
requirements that just have to be met!
We would like to thank you for your continued tireless support of
the 9/11 victims health needs.
Yours faithfully,
Craig Hall,
WTCRC President.
[Whereupon, at 4:13 p.m., the hearing was adjourned.]