[House Hearing, 108 Congress]
[From the U.S. Government Publishing Office]
ASSESSING SEPTEMBER 11TH HEALTH EFFECTS
=======================================================================
HEARING
before the
SUBCOMMITTEE ON NATIONAL SECURITY,
EMERGING THREATS AND INTERNATIONAL
RELATIONS
of the
COMMITTEE ON
GOVERNMENT REFORM
HOUSE OF REPRESENTATIVES
ONE HUNDRED EIGHTH CONGRESS
SECOND SESSION
__________
SEPTEMBER 8, 2004
__________
Serial No. 108-283
__________
Printed for the use of the Committee on Government Reform
Available via the World Wide Web: http://www.gpo.gov/congress/house
http://www.house.gov/reform
______
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COMMITTEE ON GOVERNMENT REFORM
TOM DAVIS, Virginia, Chairman
DAN BURTON, Indiana HENRY A. WAXMAN, California
CHRISTOPHER SHAYS, Connecticut TOM LANTOS, California
ILEANA ROS-LEHTINEN, Florida MAJOR R. OWENS, New York
JOHN M. McHUGH, New York EDOLPHUS TOWNS, New York
JOHN L. MICA, Florida PAUL E. KANJORSKI, Pennsylvania
MARK E. SOUDER, Indiana CAROLYN B. MALONEY, New York
STEVEN C. LaTOURETTE, Ohio ELIJAH E. CUMMINGS, Maryland
DOUG OSE, California DENNIS J. KUCINICH, Ohio
RON LEWIS, Kentucky DANNY K. DAVIS, Illinois
TODD RUSSELL PLATTS, Pennsylvania JOHN F. TIERNEY, Massachusetts
CHRIS CANNON, Utah WM. LACY CLAY, Missouri
ADAM H. PUTNAM, Florida DIANE E. WATSON, California
EDWARD L. SCHROCK, Virginia STEPHEN F. LYNCH, Massachusetts
JOHN J. DUNCAN, Jr., Tennessee CHRIS VAN HOLLEN, Maryland
NATHAN DEAL, Georgia LINDA T. SANCHEZ, California
CANDICE S. MILLER, Michigan C.A. ``DUTCH'' RUPPERSBERGER,
TIM MURPHY, Pennsylvania Maryland
MICHAEL R. TURNER, Ohio ELEANOR HOLMES NORTON, District of
JOHN R. CARTER, Texas Columbia
MARSHA BLACKBURN, Tennessee JIM COOPER, Tennessee
PATRICK J. TIBERI, Ohio BETTY McCOLLUM, Minnesota
KATHERINE HARRIS, Florida ------
------ ------ BERNARD SANDERS, Vermont
(Independent)
Melissa Wojciak, Staff Director
David Marin, Deputy Staff Director/Communications Director
Rob Borden, Parliamentarian
Teresa Austin, Chief Clerk
Phil Barnett, Minority Chief of Staff/Chief Counsel
Subcommittee on National Security, Emerging Threats and International
Relations
CHRISTOPHER SHAYS, Connecticut, Chairman
MICHAEL R. TURNER, Ohio
DAN BURTON, Indiana DENNIS J. KUCINICH, Ohio
STEVEN C. LaTOURETTE, Ohio TOM LANTOS, California
RON LEWIS, Kentucky BERNARD SANDERS, Vermont
TODD RUSSELL PLATTS, Pennsylvania STEPHEN F. LYNCH, Massachusetts
ADAM H. PUTNAM, Florida CAROLYN B. MALONEY, New York
EDWARD L. SCHROCK, Virginia LINDA T. SANCHEZ, California
JOHN J. DUNCAN, Jr., Tennessee C.A. ``DUTCH'' RUPPERSBERGER,
TIM MURPHY, Pennsylvania Maryland
KATHERINE HARRIS, Florida JOHN F. TIERNEY, Massachusetts
DIANE E. WATSON, California
Ex Officio
TOM DAVIS, Virginia HENRY A. WAXMAN, California
Lawrence J. Halloran, Staff Director and Counsel
Kristine McElroy, Professional Staff Member
Robert A. Briggs, Clerk
Andrew Su, Minority Professional Staff Member
C O N T E N T S
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Page
Hearing held on September 8, 2004................................ 1
Statement of:
Howard, John, Director, National Institute for Occupational
Safety and Health, HHS, accompanied by Dr. G. David
Williamson, Director, Agency for Toxic Substances and
Disease Registry, HHS; Dr. Janet Heinrich, Director, Health
Care-Public Health Issues, GAO; and Robert E. Robertson,
Director, Education, Workforce and Income Security, GAO.... 18
Levin, Dr. Stephen, co-director of the World Trade Center
Worker and Volunteer Medical Screening Program; Dr. Michael
Lonski, director, training and program development, Life
Matters; Dr. James Melius, administrator, New York State
Laborers Health and Safety Fund; Stan Mark, esq., program
director, Asian American Legal Defense and Education Fund;
and Ms. Micki Siegel de Hernandez, health and safety
director, Communications Workers of America................ 122
Letters, statements, etc., submitted for the record by:
De Hernandez, Micki Siegel, health and safety director,
Communications Workers of America, prepared statement of... 164
Heinrich, Dr. Janet, Director, Health Care-Public Health
Issues, GAO, prepared statement of......................... 37
Howard, John, Director, National Institute for Occupational
Safety and Health, HHS, prepared statement of.............. 23
Kucinich, Hon. Dennis J., a Representative in Congress from
the State of Ohio, prepared statement of................... 7
Levin, Dr. Stephen, co-director of the World Trade Center
Worker and Volunteer Medical Screening Program, prepared
statement of............................................... 125
Lonski, Dr. Michael,director, training and program
development, Life Matters, prepared statement of........... 132
Maloney, Hon. Carolyn B., a Representative in Congress from
the State of New York:
Prepared statement of.................................... 15
Report written by the Sierra Club, ``Pollution and
Deception at Ground Zero''............................. 106
Mark, Stan, esq., program director, Asian American Legal
Defense and Education Fund, prepared statement of.......... 154
Melius, Dr. James,administrator, New York State Laborers
Health and Safety Fund, prepared statement of.............. 143
Robertson, Robert E., Director, Education, Workforce and
Income Security, GAO, prepared statement of................ 72
Shays, Hon. Christopher, a Representative in Congress from
the State of Connecticut, prepared statement of............ 3
Towns, Hon. Edolphus, a Representative in Congress from the
State of New York, prepared statement of................... 179
Turner, Hon. Michael R., a Representative in Congress from
the State of Ohio, hearing transcript of October 2003,
pages 164 and 165.......................................... 91
ASSESSING SEPTEMBER 11TH HEALTH EFFECTS
----------
WEDNESDAY, SEPTEMBER 8, 2004
House of Representatives,
Subcommittee on National Security, Emerging Threats
and International Relations,
Committee on Government Reform,
Washington, DC.
The subcommittee met, pursuant to notice, at 12 p.m., in
room 2247, Rayburn House Office Building, Hon. Christopher
Shays (chairman of the subcommittee) presiding.
Present: Representatives Shays, Tierney, Kucinich, Duncan,
Maloney, Turner, and Ruppersberger.
Also present: Representative Nadler.
Staff present: Lawrence Halloran, staff director and
counsel; J. Vincent Chase, chief investigator; R. Nicholas
Palarino, Ph.D., senior policy analyst; Kristen McElroy,
professional staff member; Robert Briggs, clerk; Andrew Su,
minority professional staff member; and Jean Gosa, minority
assistant clerk.
Mr. Shays. A quorum being present, the Subcommittee on
National Security, Emerging Threats and International Relations
hearing entitled, ``Assessing September 11th Health Effects,''
is called to order.
Three years after the cataclysmic attacks on the World
Trade Center, shock waves still emanate from Ground Zero.
Diverse and delayed health problems continue to emerge in those
exposed to the contaminants and psychological stressors
unleashed on September 11. An effective response to that attack
and future terrorist assaults requires a coordinated, sustained
program to monitor, diagnose, research and treat those wounded.
Last October, this subcommittee convened in New York City,
to discuss the rigor and reach of Federal, State and local
efforts to assess the public health impacts of September 11. We
heard hopeful descriptions of outreach networks and monitoring
protocols, we heard criticisms of slow funding and arbitrary
deadlines and we heard concerns about a patchwork of short term
solutions to an admittedly long term set of needs Today, we
revisit those issues asking what more has been learned about
the health effects of September 11 and what yet needs to be
done to understand and repair the physical and mental toil of
catastrophic terrorism.
It is a complex challenge. As we will hear in testimony
from the Department of Health and Human Services and the
Government Accountability Office, Federal leadership and
resources continue to play a critical role in helping public
health and disability compensation systems adapt to the demands
of an urban battlefield. Make no mistake, the firefighters, the
police, the emergency medical personnel, the transit workers,
the construction crews and other first responders did not go to
work on September 11, they went to war.
In the days and weeks that followed, those who labored and
lived near Ground Zero, fought to survive against the subtle,
prolonged assault on their bodies and minds. Many are still
fighting. For them, and for future casualties in this all too
modern war, the national public health response has to be
vigilant and implacable as the enemy we face.
Our second panel of witnesses brings firsthand knowledge of
the medical shadow still cat by the falling towers of the World
Trade Center. We appreciate their time and insights. We look
forward to the testimony of all our witnesses.
At this time, the Chair would recognize the gentleman from
Ohio, Mr. Kucinich.
[The prepared statement of Hon. Christopher Shays follows:]
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Mr. Kucinich. Good afternoon and good afternoon to the
members of the subcommittee.
I want to thank the witnesses here today. I know this is an
emotional topic for many of them.
It has been 3 years since the horrific loss our Nation
suffered on September 11. Yet, while our Nation still grieves
and mourns the families, friends and heroes we lost in that
tragedy, hundreds of thousands, possibly even millions of New
Yorkers carry an even more salient reminder, the lingering
physical and mental wounds which persist to this day, but we
cannot cure those wounds when we still know little about what
caused them.
We know intuitively that rescuers, residents, workers and
people in the vicinity of the World Trade Center breathed in
dust, smoke, asbestos and toxic substances that day and for
many days after the attack. We know that the psychological
impact of that day would haunt those closest to the scene and
mental health care would be needed.
Yet, the questions we ask in Congress today are simple but
in some cases they are still not answerable 3 years later. Who
became ill or may still be ill and doesn't know it, what
harmful substances were inhaled and what toxic amounts, are
these people receiving treatment, are we working together at
all levels, Federal, State and local to provide the care and
followup needed?
The picture that is slowly developing, and that has been
confirmed by the work of GAO to be presented today, is of
woefully inadequate funding and neglect in the medical care of
those affected. According to GAO, thousands of New York rescue
and recovery workers have not yet been screened. Many of them
have not received the workers compensation they are due and
many of them do not have any medical insurance at all.
GAO also notes that hundreds of New York firefighters have
been forced to give up their livelihood, been placed on medical
leave and had to end their careers due to lingering respiratory
illnesses. There is even a new condition affecting hundreds of
these firefighters coined the ``World Trade Center Cough''
which is characterized by an acute, persistent cough with
severe respiratory problems. Much more needs to be found out
and be done.
First of all, we need to know how widespread the problem
is. There is no longer any monitoring of New York State
employees as the program has been discontinued. The World Trade
Center Health Registry Program to screen civilians closed its
enrollment as of September 1, though only 55,000 out of an
estimated 400,000 affected civilians were screened. Rescue and
recovery workers have been slow to register and be screened due
to lack of treatment options, boundary disputes, interagency
disputes and other delays.
We need to act and act in unison for the long term. There
is no plan to fund long term medical research into September 11
illnesses. We do not know what if any debilitating conditions
may require years to appear such as cancer will end up being
prevalent. Where the monitoring programs were designed to last
25 years, they are currently only funded for 5. Private and
charitable donations are drying up and the current
administration has been slow to act.
For example, Congress allocated $90 million for the
September 11 health screenings last year but this money was
only awarded to New York City medical institutions this spring.
Of the $175 million appropriated by Congress for the New York
State Workers Compensation Board, millions have been spent on
processing claims and preparing for future terrorist attacks
but almost none has gone to actual reimbursement to the
Uninsured Employer Fund, established for worker and volunteer
benefits. Moreover, not a single penny has gone directly for
treatment of these injuries. If we can raise and dispense over
$500 million in financial assistance to 100,000 for the
September 11 Victim Compensation Fund, then we can do the same
for those still suffering physically and mentally today.
No amount of money can alleviate the loss and pain many
shared that day but we all need to give a better effort.
I want to thank both Chairman Shays and Mrs. Maloney for
their persistent oversight efforts to keep the management of
and funding of these programs in the spotlight. This cannot and
must not be a partisan issue, it should not be a matter of
misinformation or red tape. It would be unconscionable to
abandon our responsibility to care for each and every one of
those victims today and into the future.
Thank you, Mr. Chairman.
[The prepared statement of Hon. Dennis J. Kucinich
follows:]
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Mr. Shays. I thank the gentleman.
At this time, the Chair would recognize John Duncan from
Tennessee.
Mr. Duncan. I have no statement, Mr. Chairman.
Thank you.
Mr. Shays. I thank the gentleman.
At this time, the Chair would recognize John Tierney from
Massachusetts.
Mr. Tierney. Thank you.
I am going to waive my remarks so that we can get to the
witnesses, but I believe Mrs. Maloney probably has some
comments to make.
Mr. Shays. Before recognizing Mrs. Maloney, let me thank
her for her persistent in encouraging us to look at this issue.
We had a hearing in New York City which was very enlightening.
I am sure this hearing will be as well. She has been in the
forefront of this issue and we do thank her.
Mrs. Maloney, you have the floor.
Mrs. Maloney. I really want to thank Chairman Shays for
holding the second hearing on the health effects of September
11. Back in October, at the end of the first hearing,
Congressman Shays promised to continue working on this topic
and once again, you have shown that you are a man of your word.
We have tabulated how many hearings have taken place and only
five have taken place on the after effects of September 11
health effects and two were held by Congressman Shays. So my
constituents join me in thanking you for your leadership on
this issue.
It is a great pleasure for me to welcome many New Yorkers
here today and many have been working extremely hard on
problems since September 11. I am particularly interested in
what the Government Accountability Office has found as a result
of their research into the health effects of September 11 as
well as the Federal assistance for September 11 workers
compensation costs.
After reading the prepared testimony of our witnesses,
there are still some basic questions that have not been
answered. Three years after September 11, it seems that we
don't even know how many people are injured or how many people
still need medical care, or who in the Federal Government is
even responsible for looking into it or taking account of it. I
am interested very much in what GAO has to say about this.
I am also interested in hearing about what is known with
regard to the high levels of injury and illnesses emerging as a
result of the attacks. For example, the most comprehensive
program to date is one that the New York delegation, led by
Senator Clinton, had to fight extremely hard to fund, the
national program offering actual medical screening exams
coordinated by the Mount Sinai Center for Occupational and
Environmental Medicine.
Preliminary analysis of the World Trade Center responders,
both workers and volunteers in that program, 12,000 of them
have shown, well over 50 percent required physical or mental
health treatment and/or aid immediately. Even months after the
September 11 disaster sometimes the illnesses did not come up.
I just met a firefighter 2 weeks ago who showed no illness
until he went to another fire and immediately lost his voice
and had tremendous problems breathing and can no longer serve
as a firefighter. This did not show or come to action until 3
years later and the doctors think it is directly related to
September 11.
I am also very interested in hearing from Dr. Levin,
regarding the current state of the program. The Johns Hopkins
December 2001 study which is reported in the GAO report found
that among non-firefighters, among those who reported no
previous history of lower respiratory symptoms, 34 percent
reported developing a cough and 19 percent reported developing
wheezing. I am also very interested in hearing about the NIOSH
survey of Federal employees working near the World Trade Center
that found that 56 percent of respondents reported having a
cough.
What is astonishing to me is that of the 10,000 Federal
workers who responded to the World Trade Center, GAO found that
only 412 exams have been completed. When we have seen that up
to 90 percent of firefighters have reported health problems
immediately after September 11, why have less than 5 percent of
the Federal employees who responded been examined for illness?
The one program we have that even attempts to track
everyone is a phone survey that was supposed to track between
250,000 and 400,00 responders, area workers and residents, but
only 55,000 have enrolled according to the report. There are so
many challenges with this so-called registry that even some
unions who had members working at Ground Zero, are telling
their members not to participate due to privacy concerns.
All total, we have six different programs that are tracking
in some way the health effects of September 11, some are as
simple as a phone call or a mailed questionnaire, while others
actually involve a doctor and a health exam. However, none
include any treatment and no where can I see a Federal
coordination among them. I find this outrageous that we
repeatedly call the men and women who rushed to Ground Zero
heroes and heroines. We describe it as a war zone but if they
do not have health coverage or have lost their job because of
their health, there is no health coverage available for them.
This needs to be changed and it is a very, very important
issue.
Instead of coordination, it looks like you have a number of
different programs going in different directions with different
ways of collecting and analyzing data. I don't think this is
the way to treat the heroes of September 11.
I hope to hear from our witnesses from the administration
who in the Federal Government is in charge, who in the Federal
Government is worried about these people and who can the
victims of September 11 turn to for help. We literally have
thousands of rescue workers, area workers, local residents who
are sick, yet we have had to fight every step of the way just
to set up a program that monitors and documents they are sick.
We still do not have treatment.
One possible avenue to receive some sort of compensation is
the funding provided to the workers compensation. It is
absolutely unbelievable to me with so much demonstrated need
that GAO finds in its testimony that of the $25 million
Congress appropriated for injured volunteers, only $456,000 has
been spent and only 31 percent of their claims had been
resolved by the State.
I hope to hear more about this from our witnesses today
including what definition the State gave them for the term
resolved. If you were to tell me that we would not provide care
for the heroes who so selflessly gave of themselves on
September 11, I would not believe you and I do not think the
American people would believe you and I do not think the
American people would believe you. Yet, we have individuals who
are now so sick from their work at Ground Zero that they cannot
work, have lost their health care and the Federal Government's
response so far has been to turn a cold shoulder.
Quite simply, they deserve to be treated better. We give
our veterans health care if they get wounded in battle. Why
should our first responders and relief workers be treated
differently? We lost more people on September 11 than we did on
Pearl Harbor. This is the precise reason why Chairman Shays and
I have introduced H.R. 4059, the ``Remember 9/11 Health Act.''
This legislation is modeled after a program that gives free
Federal health insurance to volunteer forest firefighters who
get injured while fighting a forest fire, provides Federal
health insurance to individuals who are sick as a direct result
of the September 11 disaster. The Senate has passed a bill
offered by Senators Voinovich and Clinton which sets up a
similar program for all major disasters but the House has yet
to act on it.
Immediately following the terrorist attacks, the most heart
warming thing that happened was how all of America came
together and tens of thousands of people came to lower
Manhattan to help. I truly believe the most inspiring scene I
have ever seen in my life was the bucket brigade of volunteers
who went in and worked with the police and fire. Many of them
have no health coverage, there is no way to help them now. We
know the deep sacrifices of the police, the firefighters, the
Port Authority made in terms of first responders who lost their
lives.
The story is not told as often of the thousands who have
suffered from health problems. We always talk about the people
who lost their lives, we need to start talking now about the
people who are suffering from health problems. We are not, in
my opinion, living up to our end of the bargain. We are not
caring for the health of our heroes and heroines of September
11. Unless we take the opportunity now to care for them, we
jeopardize the future response to disasters. We cannot afford
having first responders and volunteers second guess their
actions as they respond to a disaster when they rush in to help
others. They should at the very least know that the Government
will be there to help them with health care coverage.
Again, I thank the chairman for his oversight and for his
persist work to help the victims of September 11.
[The prepared statement of Hon. Carolyn B. Maloney
follows:]
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Mr. Shays. I thank the gentlelady. Let me say, your
statement was outstanding. It was longer than we usually have
in an opening statement, but frankly, she was using Mr.
Tierney's time as well. I thank the gentleman for yielding
because it was an outstanding statement.
The only reason I am making that preface is that I am going
to be asking the witnesses to stay closer to 5 minutes since we
are starting later in the day. At this time, I would ask if Mr.
Turner has any comment or if I should recognize the witnesses?
Mr. Turner. No.
Mr. Shays. Let me ask unanimous consent that all members of
the subcommittee be permitted to place an opening statement in
the record and that the record remain open for 3 days for that
purpose. Without objection, so ordered.
I ask further unanimous consent that all witnesses be
permitted to include their written statement in the record and
without objection, so ordered.
I think the key point I heard in Mrs. Maloney's statement
is how do you get the disparate pieces to fit together? How do
we do that? I hope that is answered.
I would note our first panel consists of: Dr. John Howard,
Director, National Institute for Occupational Safety and
Health, HHS, accompanied by Dr. G. David Williamson, Director,
Agency for Toxic Substances and Disease Registry, HHS; Dr.
Janet Heinrich, Director, Health Care-Public Health Issues,
GAO; and Robert E. Robertson, Director, Education, Workforce
and Income Security, GAO.
Dr. Howard, you have the floor.
STATEMENTS OF JOHN HOWARD, DIRECTOR, NATIONAL INSTITUTE FOR
OCCUPATIONAL SAFETY AND HEALTH, HHS, ACCOMPANIED BY DR. G.
DAVID WILLIAMSON, DIRECTOR, AGENCY FOR TOXIC SUBSTANCES AND
DISEASE REGISTRY, HHS; DR. JANET HEINRICH, DIRECTOR, HEALTH
CARE-PUBLIC HEALTH ISSUES, GAO; AND ROBERT E. ROBERTSON,
DIRECTOR, EDUCATION, WORKFORCE AND INCOME SECURITY, GAO
Dr. Howard. My name is John Howard and I am the Director of
the National Institute for Occupational Safety and Health which
is part of the Centers for Disease Control and Prevention in
the Department of Health and Human Services. I am pleased to
appear before you today on behalf of CDC and am joined by David
Williamson of the Agency for Toxic Substances and Disease
Registry.
Mr. Shays. Before you proceed, I would note for the record
we have Jerry Nadler from Manhattan. I would like to go on with
the testimony but without objection, the gentleman is allowed
to participate fully as any other member here. If you would
like to limit your comment to a minute or so, I would be happy
to have your statement. We started literally 25 minutes ago and
we haven't heard from the witnesses.
Mr. Nadler. I think it is about 2 minutes.
Mr. Shays. Mr. Nadler is in the area affected and I welcome
his statement.
Mr. Nadler. I appreciate your holding this hearing and
allowing me to sit on the panel.
I appreciate your holding the hearing today regarding the
health effects of September 11's terrorist attacks and those
who live and work at Ground Zero.
As the Member of Congress representing Ground Zero, I have
heard from far too many constituents with health problems
because of exposure to contaminants in World Trade Center dust.
For almost 3 years, I have been criticizing the Environmental
Protection Agency's response and that of other Federal agencies
to the terrorist attacks on New York City.
In March and April 2002, my office published a white paper
documenting EPA's misfeasance and malfeasance in an August 2003
EPA Inspector General issued report documenting the EPA gave
false assurances to the people of New York regarding the air we
were breathing and that the EPA refused to take responsibility
to decontaminate indoor spaces such as apartments, offices and
schools despite the fact they are federally mandated to do so.
Earlier this year, residents, workers and school children
filed a class action lawsuit against EPA in an effort to
finally get the agency to do its job and do it right as well as
to request medical relief. I am very sorry to see the EPA is
not present at this hearing today. At the last hearing on this
subject back in October, I asked EPA some questions and as far
as I know, they have yet to provide any answers. The EPA has
also yet to fully answer a Freedom of Information Act request
submitted by myself, Representative Owens, along with the
support of Democratic Leader Nancy Pelosi and Ranking Members
John Dingle, George Miller, Henry Waxman and John Conyers. In
order to fully address the issues under consideration today, we
hope the committee would receive all the information requested
by Congress.
I understand that the chairman and Representative Maloney
want to focus more on the health registry and the new GAO
report on some of the EPA issues. Frankly, we do not need EPA
to be here to tell us people are sick as a result of exposure
to hazardous substances on September 11. Many of the problems
associated with the health registry stem from EPA failures in
responding to the terrorist attacks. For example, EPA has never
properly tracked the release of hazardous substances and
characterized the site to determine who has been exposed, what
they were exposed to and the full extent of how far the
contamination spread. The EPA instead drew an arbitrary
boundary at Canal Street which the health registry followed.
Even today's New York Times points this out in a story on this
very GAO report. According to the article, ``There are still no
definitive answers to what exactly was in the dust, how many
people suffered because of their exposure.'' Again, this is
because EPA never characterized the site consistent with
Federal law.
The article goes on to say that ``Although EPA warned
people working directly in the rubble to wear protective masks,
the agency maintained the dust settled over wider areas
including only low levels of asbestos and generally was not
harmful, a position the spokeswoman said the agency continues
to hold.'' You simply cannot separate the health effects of
September 11 from EPA's response at the site.
I believe it is very clear what the Federal Government
should do to protect the health of all those exposed to
hazardous substances as a result of September 11. The EPA
should follow its federally mandated procedures to characterize
the site and the Federal Government should cover the actual
medical treatment of those in need. We must do more than just a
screening program. The victims of the terrorist attack are not
just statistics.
The GAO report under consideration today provides more
disturbing evidence to the extent that the health impact
following September 11 and the gaps in medical treatment for
those affected. According to the report, 90 percent of the
firefighters and EMS workers at the site had respiratory
ailments. Of the 332 firefighters in the study that reported
``World Trade Center Cough'' only about half have shown any
improvement.
The GAO report also found that the people living and
working in lower Manhattan experienced health effects similar
to first responders and that almost 75 percent of respondents
living near the site experience respiratory symptoms. The only
assistance for these residents is the health registry which
does not provide any actual medical treatment.
It troubles me that it has been almost 3 years since the
attacks and we have made so little progress in helping people
recover physically and mentally from the attacks. I am pleased
this committee is continuing to look into the health effects of
September 11 and I look forward to hearing from the witnesses
and learning more about this GAO report so we can move ahead
and try to make progress on this issue.
The first responders, workers, residents and all those
affected by the attacks deserve more from the Federal
Government. I stand ready to work with my colleagues in that
regard and I again express my appreciation to the chairman, Mr.
Shays, and the ranking member, Mrs. Maloney, for following up
with this hearing.
Mr. Shays. I thank the gentleman and appreciate his
statement.
Dr. Howard, you are going to start over again.
[Witnesses sworn.]
Dr. Howard. My testimony this afternoon is going to focus
on the most recent CDC efforts to respond to the needs of
workers and volunteers regarding the potential health effects
of their exposures at the World Trade Center site.
Regarding baseline medical screening, in 2002, CDC's
National Center for Environmental Health granted $4.8 million
to the New York City Fire Department and $2.4 million to the
New York State Department of Health to conduct baseline medical
evaluations of firefighters and New York State employees who
responded to the World Trade Center site in the course of their
own jobs.
To assess the health status of the emergency services and
rescue and recovery personnel who were not otherwise covered by
the New York City Fire Department or the New York State Health
Department, baseline medical screening programs, CDC awarded
$11.8 million to the Mount Sinai School of Medicine, Center for
Occupational and Environmental Medicine to establish the World
Trade Center Worker and Volunteer Medical Screening Program. In
2003, CDC supplemented this program with an additional $4
million.
Mount Sinai established the program by organizing a
consortium of occupational health clinics both in New York City
and across the Nation to provide medical screening services to
workers and volunteers. Baseline screening began in July 2002
and as of August 4, 2004, 11,793 workers and volunteers have
been screened.
NIOSH scientists, in collaboration with Mount Sinai,
analyzed data from a subset of participants, about 10 percent
of the sample seen at Mount Sinai between July 2002 and
December 2002. These findings will be published this Friday,
September 10, in two articles in the CDC Morbidity and
Mortality Weekly Report and will describe the physical and
mental health effects seen in World Trade Center rescue and
recovery workers and volunteers.
With regard to long-term medical monitoring, in 2003,
Congress directed and provided $90 million for FEMA to work
with NIOSH to support long-term followup medical monitoring for
World Trade Center rescue and recovery workers and volunteers,
including current and retired New York City firefighters. In
anticipation of receipt of these funds, NIOSH held a public
meeting in New York in May 2003 to gather input regarding the
content and the structure of this long-term medical monitoring
program. On March 18, 2004, CDC awarded eight grants for a
total of approximately $81 million to provide New York City
firefighters and other rescue and recovery workers and
volunteers with medical monitoring examinations at six clinical
centers throughout New York City and over the next 5 years.
Importantly, the New York City Fire Department and the
Mount Sinai School of Medicine provided funding to establish
coordinating data centers to facilitate coordination and
communication among the clinical centers and to assure quality
control. Followup medical examinations will begin in October
2004 after appropriate hospital review committees have approved
the clinical protocols.
CDC and ATSDR are also working to identify the health
effects of September 11 on the people living, working or
attending school in the vicinity of the World Trade Center
site. In collaboration with the New York City Department of
Health and Mental Hygiene, ATSDR has established a registry to
identify and track the long-term health effects of tens of
thousands of workers and community members who were the most
directly exposed to smoke, dust and debris resulting from the
World Trade Center collapse.
Launched on September 5, 2003, the World Trade Center
Health Registry will interview registrants about their physical
and mental health periodically over 20 years or more through
the use of comprehensive and confidential health surveys. More
than 59,000 have been interviewed and enrolled in the registry
to date and they include rescue and recovery workers, office
workers, residents, and school children from each of the 50
States. The registry will be maintained over time by the New
York City Department of Health and Mental Hygiene and will
provide an important picture of the health consequences of the
events of September 11 and can be used to identify physical or
mental health trends resulting from the exposure.
The New York City Department of Health and Mental Hygiene
and ATSDR will communicate information to registrants and
health care providers as well as posting information updates
quarterly on the World Trade Center Health Registry Web site at
www.wtcregistry.org. The upcoming October quarterly update will
present for the first time health outcome data collected and
analyzed via the registry.
In summary, CDC and ATSDR are committed to assessing the
health effects resulting from September 11, 2001 World Trade
Center disaster and to identifying the physical and mental
health needs of affected workers, residents and community
members.
I thank you for your attention. I am pleased to answer any
questions you may have.
[The prepared statement of Dr. Howard follows:]
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Mr. Shays. Thank you very much, Dr. Howard.
Dr. Heinrich.
Dr. Heinrich. I too appreciate the opportunity to be here
today as you discuss the health effects of the September 11
terrorist attack on the World Trade Center.
Although people across the country were exposed to the
emotional trauma of the attack, the residents and workers in
the area around the World Trade Center as well as responders,
not only experienced the event but also were exposed to a
complex mixture of potentially toxic contaminants in the air
and on the ground.
As noted before, almost 3,000 people were killed in the
attack, although a majority of the estimated 16,000-18,000
people who were in the complex that morning were able to
evacuate with minor or no injuries. An estimated 40,000
responders were at or in the vicinity of the World Trade Center
site or the Staten Island Fresh Kills landfill.
Concerns have been raised about the short and long term
physical and mental health effects. Under challenging
circumstances, various government agencies and private sector
organizations established several efforts to understand and
monitor the health effects resulting from the attack. I will
describe the variety of physical and mental health effects that
have been reported across a wide range of people in the
aftermath of this attack.
Even though most people did not require hospitalization
immediately after the attack, thousands of people were treated
for injuries including inhalation, musculoskeletal burns and
eye injuries. In addition, thousands of responders were treated
for injuries during the 10 month clean-up period. Despite the
disaster site being considered extremely dangerous, and the
more than 3.7 million work hours logged over this period, very
few injuries resulted in lost work days. There was a concerted
effort by everyone to work safely as well as a reluctance to
leave the site.
A range of respiratory health effects including a new
syndrome called World Trade Center cough and chronic diseases
such as asthma were observed among people exposed to the dust
and debris of the World Trade Center collapse. Studies present
a consistent picture in findings regarding the conditions among
those people involved in rescue, recovery and cleanup as well
as those who lived and worked in the vicinity. Commonly
reported conditions include wheezing, shortness of breath,
sinusitis and gastroesophogeal reflux disease.
Almost all of the New York City Fire Department
firefighters who responded to the attack developed respiratory
problems and for some this has meant their careers ended as
firefighters. While some responders have reported that symptoms
resolved after a few months, many reported pulmonary symptoms 9
months or more after the attack.
In the weeks and months that followed, many people reported
symptoms associated with post-traumatic stress disorder or PTSD
with people living or working near the site reporting a higher
rate. People near the site also reported more symptoms
associated with depression, stress and anxiety.
The six programs established to monitor and understand
these health effects vary in terms of which people are eligible
to participate, methods for collecting information about the
health effects, options for treatment referral and the number
of years people will be monitored. These programs are not
centrally coordinated but some are now collaborating with each
other. Although five of the programs target responder
populations, the largest, the World Trade Center Health
Registry, is open to people living and working in the vicinity
as well as responders.
The monitoring programs vary in their methods for
identifying those who may require treatment and although none
are funded to provide treatment, they provide options for
referrals. For example, the New York City Fire Department
Program offers a comprehensive medical evaluation and mental
health screening. People needing treatment may obtain care from
the fire department's Bureau of Health Services.
The Mount Sinai Program also provides a comprehensive
physical and mental health evaluation. If a person requires
followup medical or mental health services and is unable to pay
for these, they may be referred to the Mount Sinai Health for
Heroes Program which is supported through donations, or to
other safety net programs.
The Federal Occupational Health and New York State programs
also include medical evaluations as well as self-administered
health and exposure questionnaires. Workers who require
followup are referred to their primary care physicians.
Unlike the other monitoring programs, the World Trade
Center Health Registry and the Hopkins registry obtain
information obtained by questionnaire and does not include a
medical evaluation and neither effort is affiliated with
treatment. Health effects have been reported but the full
impact is unknown.
The potential for additional long term effects remains, yet
the monitoring programs may not be in operation long enough to
capture information about new conditions and are not set up
necessarily to coordinate data and findings.
We continue to hear the concerns about the lack of
resources for adequate treatment of chronic conditions. People
really must rely on the existing patchwork of services.
Mr. Chairman, I am happy to answer any questions you may
have.
[The prepared statement of Dr. Heinrich follows:]
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Mr. Shays. Thank you very much.
Mr. Robertson.
Mr. Robertson. Good afternoon and thanks for the
opportunity to be here.
I am going to switch gears a bit and talk about the Federal
assistance provided to the State of New York to help the State
deal with the workers compensation claims as a result of the
terrorist attack.
Mr. Shays. Basically, we were talking about health effects
and now we want to talk about compensation. There are really
two streams of financing we are talking about. One is a stream
of money for health needs and another to compensate for lost
work.
Mr. Robertson. Absolutely.
As you are aware, in the aftermath of the September 11
tragedy, the New York State Workers Compensation Board faced an
unprecedented challenge in dealing with claims from workers or
volunteers who were injured, became ill or died as a result of
the terrorist attacks or the recovery efforts that followed.
To help the Board meet this challenge, Congress
appropriated Federal funds totaling $175 million. These funds
were provided through the U.S. Department of Labor for the
board in three earmarked portions, $125 million was to be used
for processing claims; $25 million was to be used to pay
benefits to workers associated with uninsured employers; and
last, $25 million was to be used to pay benefits to volunteers.
I am going to divide my comments into two general areas.
First, I will talk briefly about how much of the Federal
funds have been used and what they have been used for and then,
I am going to talk about the status of the applications for
compensation that the New York Board has received to give you
some perspective on the number of claims the State is dealing
with and what actions have been taken on them.
Starting with the use of claims, we found as of June 30,
2004, the New York State Workers Compensation Board had used
about $49 million of the total $175 million appropriated for
September 11 workers compensation expenses. If you look at how
the funds within each of the three individual earmarked
portions of Federal assistance were used, this is what you
would find. From the $125 million portion available for
processing claims, the Board used about $44 million to
reimburse two State entities for benefits they had paid to
September 11 victims or their survivors, those entities being
the New York State Crime Victims Board and the New York State
Insurance Fund.
In addition to these reimbursements, the Board used about
$4.4 million of the $125 million to prepare for any future
attacks. As an aside, I should note that we are continuing to
gather information on whether or not the Board's use of funds
in this particular earmarked category of Federal assistance is
consistent with the Appropriation Act and the grant agreement
covering the use of the funds.
Concerning the $25 million earmarked for paying benefits
for workers associated with uninsured employers, we found the
Board had not used any of these funds. However, the Board had
used funds from its Uninsured Employer Fund to pay benefits for
September 11 workers who worked for uninsured employers. It
plans to try to recoup these funds from uninsured employers
before drawing upon Federal funds.
Finally, the Board has used about $456,000 of the $25
million earmarked for paying benefits to volunteers or their
survivors.
I would like to move now to the status of September 11
claims. In that respect, the Board has indicated that as of
mid-2004, it had received 10,182 claims for workers
compensation and an additional 588 claims for volunteers that
were related to the September 11 attacks. Ninety percent of the
workers compensation claims had been resolved, meaning the
Board had resolved all the issues that it could with the
information available at the time.
Representative Maloney I am afraid I am not going to be
able to go too much further than that in defining resolved.
Mr. Tierney. May I interrupt you for a second. Did you say
90 or 9?
Mr. Robertson. Ninety.
The remaining 10 percent of claims were pending in that the
Board was waiting for additional information, hearings were yet
to be held or the claimants had not pursued their case after
they filed initially.
Perhaps to head off future questions, I should point out
that the Board does not track data on approval or denial rates
of claims because, according to Board officials, the Board's
core mission is to process individual claims, not their
outcomes. While we can't say how many of the worker
compensation claims were approved or denied, we can say that 42
percent of the worker compensation claims received were being
paid or were in the process of being paid.
Turning to the status of the 588 volunteer claims, we see
the Board had resolved a lower percentage of these claims in
comparison with the worker compensation claims, 31 percent
versus 90 percent.
The Board indicated that many of the volunteer claims were
pending because the claimants were not actively pursuing their
clams. Additionally, 85 volunteer claims were awarded cash or
medical benefits.
Mr. Chairman, that concludes my prepared remarks. I would
be happy to answer any questions at the appropriate time.
[The prepared statement of Mr. Robertson follows:]
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Mr. Shays. Thank you very much, all of you for your concise
and helpful testimony. We will start by turning to Mr. Tierney
to ask the first set of questions.
Mr. Tierney. Thank you.
Mr. Robertson, I want to pick up where you left off. You
used the word resolved the claims, so can we explore that a bit
and have you define that for us what exactly you mean by
``resolved claim?''
Mr. Robertson. I don't think you will like the explanation
because, as I said earlier, I have given you all I have in
terms of the definition which is basically the Board's
definition. That is they have in essence acted on any piece of
information they had and made any decision they could based on
the information they had at that point in time. According to
the Board, claims can go back and forth between resolved and
pending depending on the information that is brought to bear.
Mr. Tierney. So they might not get resolved if they think a
person has abandoned or neglected their claim?
Mr. Robertson. That would go in the pending category.
Mr. Tierney. What items go into the resolved category, what
is the range of decisions that end up being called resolved?
Mr. Robertson. It would probably be easier to define
pending and then anything else.
Mr. Shays. Mr. Tierney is going to have more than 5 minutes
because we do need to understand this issue and you do not need
to keep saying you don't think we are going to like the answer.
You don't need to presume that. What you are doing is reporting
on not what you are doing but on what someone else is doing. If
you could help Mr. Tierney understand this point by point and
the whole subcommittee, it would be helpful.
Mr. Tierney. We are not holding you responsible.
Mr. Robertson. Let me say a couple things. Again, I think
it is probably easiest to define pending and basically say
anything else that is not defined as pending would be in the
resolved category.
Mr. Tierney. That is only slightly helpful because it
doesn't tell me at all any characteristics of the other things.
If it is pending, it hasn't been acted upon, it is in resolved
but it doesn't necessarily mean it has been acted upon
favorably or any other way.
Mr. Robertson. Absolutely, and as I said, the cases can go
between pending and resolved based on the information.
Mr. Tierney. And they have no other breakdown of this at
all?
Mr. Robertson. No. It was very difficult for us to give a
perspective on how the September 11 claims were treated because
we didn't have information on typically what is the rate of
approval and the rate of denial for the claims the Board
normally processes and how the September 11 claims compare to
that. We didn't have that data so that was one of the reasons
it was very difficult for us to provide perspective on what
those status numbers mean.
I would like to point out another factor that also limits
or inhibits our ability to provide the perspective I think
everyone wants in terms of the September 11 claims in
comparison with the other compensation worker claims. The fact
of the matter is that even if we had information on rates of
denial and rates of approval, it could be that the very basic
characteristics of the September 11 claims were so different
from the typical worker compensation claim that you would have
to be careful in making that comparison.
This is a very long way of saying we have been frustrated
in trying to provide perspectives on what was happening with
these September 11 cases and the status of the cases.
Mr. Tierney. Any other ideas on how we are going to try to
recapture some of that ground?
Mr. Robertson. We are getting data and we do present some
of the data in the prepared statement on specific types of
claims--the volunteer claims--because those use specific
Federal funds and the Board is following those in terms of
providing information on how many have been awarded and how
many weren't. In that respect we are getting more information.
Mr. Tierney. Dr. Heinrich, with respect to those workers
who were injured and have not been able to return to their
former employment, what did you say in your statement about
what is being done for those individuals? Is anything being
done and how are we doing?
Dr. Heinrich. First of all, we don't have good numbers on
all the people who were injured. I think the best of our
information is for people who had musculeskeletal injuries or
sprains. They were resolved fairly soon after the attack. The
major issues really seem to surround people who have developed
chronic conditions as opposed to injuries.
Mr. Tierney. Many of those people have not been able to
return to work. I am interested in knowing what we are doing
for that population of people.
Dr. Howard. The only thing I would say is I think we
probably need to hear from the Mount Sinai people who are
actually seeing these thousands of workers and former workers
to give some reference point for that. I don't have any
information from the CDC perspective. I would imagine if they
are covered by workers compensation, there are rehabilitation
provisions in the State Workers Compensation Act.
Mr. Tierney. They would be back in the resolved category?
Mr. Robertson. Yes.
Mr. Tierney. Thank you, Mr. Chairman. Thank you for your
courtesy.
Mr. Shays. At this time, we will turn to Mr. Turner.
Mr. Turner. I want to thank you again for your efforts to
focus on this issue. This is a very important issue as we all
know not only for the heroes of September 11 but also for the
victims of September 11 which through this process will be
identified.
One of the issues that was clear when we had our hearing in
October on this issue was the issue of misconceptions of how
the agencies relate to one another and responsibilities as to
how agencies relate to one another. I would like to ask that
the hearing transcript of October 2003, pages 164 and 165 be
admitted to this record.
Mr. Shays. Without objection.
[The information referred to follows:]
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Mr. Turner. It goes to refute the misconception that
Federal EPA was mandated to undertake decontamination at or
surrounding the World Trade Center. There is pretty exhaustive
response in there by the EPA as to what their authorization
responsibility is and their mandated responsibilities.
Getting to the issue of the different agencies and how they
interact, one thing that was clear in that hearing in October
is there appeared to be a lack of coordination both in
registries and information being gathered in the processing of
claims and assistance being provided.
I am hopeful that has improved since October and I would
like your thoughts as to how the various interests and parties
are working together to ensure we get a clear understanding of
what resources will be needed, what resources are being
applied, what information and data is being collected and how
it is being handled and meshed together so we can have a clear
picture of what needs to be done. Dr. Howard.
Dr. Howard. I do have a few thoughts on this issue. The
short answer is I think we are better coordinated than we were
but I think the long answer has to start with September 12,
2001, when response had to be immediate and oftentimes after a
disaster, without existing programs in place, you make the best
opportunities work for you.
I think that coordination wasn't the first item in the
agenda in late 2001 and 2002. I think that is true in most
disasters and I think I would like to make a relationship
between that early response that was rapid and some of the
money that came out of CDC very early went to States and grant
systems that were already in place. That is how the New York
Department of Health got money.
As 2002 and 2003 went on, the need for increased
coordination was clear. When NIOSH received the $90 million
from FEMA to do long term monitoring, one of the things we
insisted on was coordination amongst the various medical
monitoring programs, the Fire Department and Mount Sinai. We
set aside money within that $90 million for coordination
between those two entities and between the Government agencies.
I think we have grown in our understanding of coordination.
From our department's viewpoint, the Department of Health and
Human Services, our Office of the Secretary, the Office of
Public Health Preparedness is the coordinator for our program,
but we are not centralized in the traditional sense. All the
programs are not one program because they attempt to deal with
different populations situated in different ways and that have
different needs.
I think the take home point I would like to make with
regard to the coordination and centralization issue is that the
biggest lesson I think we have learned from the establishment
of these programs has been that emergency preparedness needs to
include right now and in the future an aspect of medical
preparedness also, not only the immediate need of taking care
of people who are acutely injured and have acute illnesses, but
also people who will develop chronic health effects.
I think that the Mount Sinai and other programs CDC has and
HHS have funded have taught a very valuable lesson about the
value of including medical preparedness for chronic conditions
that will develop from disaster responses. I would say my
thoughts are that coordination has developed over time, we are
much better coordinated now, 3 years later, than we were on
September 12, 2001.
Dr. Heinrich. I would like to add that there are
institutions and organizations in place now as a result of our
experience with September 11 that weren't there before. The
States and certainly the city of New York have received money
so that they are better prepared for major public health
emergencies and bioterrorism. You have at HHS now the Office of
Public Health Emergency Preparedness so that they really do
have a mandated coordination role along with the Department of
Homeland Security.
That is not to say that everything is rosy but at least you
have people that are accountable for that coordination effort.
Certainly in New York City we have seen that they practiced on
a number of occasions coordination because of a public health
emergency event, the anthrax incidents, for example.
Mr. Robertson. My perspective is obviously a lot more
narrow than my two colleagues. One of the points I wanted to
make today in regard to the Federal assistance and how well it
was used or well it wasn't used, is it seems to me now would be
a terrific time, just talking about the narrow issue of Federal
assistance, a terrific time for all of the players at the State
and Federal level to get together and basically identify what
worked and what didn't work.
This lessons learned type of evaluation, I think, is
particularly important now in the world we live in because
there is no guarantee that we are not going to experience
another tragedy. I would encourage kind of a lessons learned
analysis of how we use the Federal assistance for the worker
compensation funds.
Mr. Shays. I think there is almost a guarantee that there
will be future events. Some we will be able to detect and
prevent and some we probably won't be able to, maybe not as
horrific, God help us, but I go under the assumption that one
of the reasons we are having this hearing is to make sure that
we learn from the New York experience, in addition to helping
our fellow countrymen.
At this time, the Chair would recognize Mrs. Maloney for 10
minutes.
Mrs. Maloney. I thank all the panelists. I would like to
say that your report, Dr. Heinrich, is probably the most
thorough evaluation I have seen so far on the Federal response
to September 11 health effects. Reading your testimony, it
looks to me like 3 years after September 11, we still have no
idea of the number of people who are ill or injured from the
attacks. We still don't have that.
From reading your report, it looks to me that no one from
the Federal Government or anywhere can give us a number as to
how many people are ill because of September 11. It appears
that no one is in charge. Is this a fair assessment?
Dr. Heinrich. The no one in charge, I would agree with
although as we have heard, there are new efforts to try to
coordinate the programs that are doing the monitoring. I
suppose we could say because most of these programs that are
doing the monitoring come from CDC that one might expect that
CDC would take a role in being accountable for all those
programs. The fact of the matter is, you are correct. We don't
know the exact number of people injured as a result of
September 11 or the number of people who now have chronic
conditions.
Mrs. Maloney. Dr. Howard, can you tell me who in the
Federal Government is in charge of coordinating the health
effects of September 11?
Dr. Howard. As I said, I can only speak for the Department
of Health and Human Services. Certainly as Dr. Heinrich has
said, our Office of the Secretary, the Office of Public Health
Preparedness specifically, is our coordinator for all of our
programs.
As our Secretary is fond of saying, we are one department.
So all of the programs that emanate from the Department of
Health and Human Services are coordinated. As I said also, that
doesn't mean that each program looks like the other program.
There are at least five programs that I know of funded by the
Department to provide medical monitoring as well as the
registry that ATSDR and the New York City Health Department
administer. So it doesn't mean they are all centralized but
they are coordinated.
I would also like to point out that there are coordinations
that are occurring at the level that I think are also
important, in addition to the Federal bureaucratic level. That
is at the level of the users of the service, the registrants in
the registry, the labor representatives of the workers, and the
medical providers in the community. I think there is a lattice
work of coordination going on there that I would say did not
exist a couple of years ago but has developed over the last
couple years.
Mrs. Maloney. You are saying that the person in charge is
Tommy Thompson of Health and Human Services?
Dr. Howard. As our Secretary would say and as my director
would say, Dr. Gerberding, the buck stops with all of us in
terms of the managers of all of our programs.
Mrs. Maloney. One person has to be in charge.
Dr. Howard. As I said, the Office of the Secretary and the
Office of Public Health Preparedness is the responsible entity
within HHS.
Mrs. Maloney. Can you give me the name of who is in charge?
Dr. Howard. The office is run by the Assistant Secretary,
Stewart Simonson.
Mrs. Maloney. Does he know or anyone in NIOSH or the
Federal Government how many people are still suffering or still
sick as a direct result of September 11?
Dr. Howard. I am not sure that anybody could give you an
exact figure. The denominator of people exposed is very rough
with a large margin of error.
Mrs. Maloney. We have six different areas doing various
monitoring and oversight according to Dr. Heinrich's report
from the GAO. Someone should be pulling all of this together.
At the very least we should know how many people are sick as
documented in these six different programs.
Dr. Howard. I don't think it is hard to come up with an
estimate based on the large margin error with the denominator
of people exposed and the number of people that have entered
the registry. We will be able to get an idea from the registry
of a prevalence number of people exposed. My colleague who runs
the registry may be able to respond a little to that.
Mrs. Maloney. Yet we know in the registry, only 55,000
people have gone into the registry, so that is not in a sense
an accurate number. Dr. Howard, since you said your agency is
in charge. I want to get a number of how many people are sick
and when are you going to get me that information? I think that
is a legitimate question and something that should have been
part of the GAO report but because we were not coordinated,
they were not able to come up with the number.
I think 3 years after September 11, we should have a better
assessment of people's health conditions that we can talk
about. Because I represent New York, a firefighter just came to
my office 3 weeks ago and when he went into a fire, he thought
he was totally well and he lost his ability to speak. The
doctors at the New York Fire Department are saying it is
related to September 11. He can no longer operate as a
firefighter. It is an illness that came out 3 years later that
he didn't have at first. We have to have that some place and
you say your unit is going to have that and coordinate it.
I want to know how many people are still sick based on the
six registries we have going and when can he get us that
information. I think that is a legitimate request.
Dr. Howard. I think we will have on September 10 the first
peer reviewed report in CDC's MMWR which will have a subset,
about 10 percent, of the participants that have been screened
at Mount Sinai. We will have a prevalence figure, an incidence
figure, of respiratory symptoms, muscle skeletal symptoms and
others.
Mrs. Maloney. Dr. Howard, that is just one. I am glad you
will have that on September 10. I congratulate you and everyone
who has worked on it but that is just one of the six different
areas that GAO outlined that are pulling together this
information. I am delighted we will have Mount Sinai's report
on September 10.
What about the other five programs? When are we going to
have their report combined together in one getting back to my
initial question, who is in charge? Someone should be in charge
of having this information in the Government and if that is the
only thing that comes out of this hearing, I would be very
happy to know there is one central point that Members of
Congress can go to and the public and health experts to get
this information.
Dr. Williamson. That is a very good question. I can respond
with regards to the registry. One of the reasons the registry
was established was because when you have these other five
programs, there is one registry and five other programs, sets
of health studies. Those sets of health studies are looking at
very specific subpopulations of people who were exposed during
and immediately after, a few months after the disaster.
We were hoping with the registry to be able to capture a
cross section of everyone who was exposed not necessarily just
subpopulations. We think the registry is going to give us the
best idea of how many people actually were injured and/or ill
resulting from the collapse of the World Trade Center Towers.
We are not going to have an exact number because we only
have so many people who have registered and will be included in
the registry but that is a much broader and more comprehensive
snapshot than any of the other five sets of programs you are
talking about because it includes all of the people who were
potentially and were exposed during and immediately after the
collapse of the World Trade Center Towers.
Mrs. Maloney. But it is just one of the six different
programs and when you look at the other five programs, they
have more people than the 55,000 in the registry. For whatever
reason, the registry is not capturing the people. I think we
have a challenge here and I think it is an important challenge.
I think many health experts have talked about the unique
disaster of pulverized glass, cement, toxins, antitoxins, all
these chemicals.
What is that going to mean in terms of long term health
effects for cancer and so forth and how can we be assured that
the monitoring will continue for 20 years and maybe longer to
really track this?
Dr. Williamson. I am not sure we can assure that we would
be able to track it for over 20 years. On an annual basis, we
are looking for being able to continue the registry as the
registry was established a couple of years ago and hopefully we
will receive additional funding in the fiscal year 2005 budget
to increase our registry efforts but we can't explain whether
or not we are going to be able to have the registry for more
than 20 years.
We would like to be able to track as best we can not only
the short term but the long term effects of the disaster. For
as long as we continue collecting the data, analyzing it and
find things in the data that indicate that we need to study
more subpopulations, we are hoping to continue the registry.
Dr. Howard. That study over 5 years will provide very
powerful indicators of the future need for funding.
Mr. Shays. Before recognizing Mr. Nadler, I want to make a
point that haunts me a bit. I had some doctors who treat cancer
patients, this was 10 years ago, and they came because they
wanted me to get me to focus more on smoking. They said that 20
years after World War I, cancer rates went up almost
perpendicular. The identical period of time, they leveled off
and they just soared. That is unsettling because for a number
of years, people thought they were safe and yet they weren't.
That is why the monitoring issue is something I want to focus
on long term.
At this time, the Chair would recognize Mr. Nadler for 10
minutes.
Mr. Nadler. Let me state for the record, regarding a
comment made by the gentleman from Ohio a few minutes ago, at
the last hearing when EPA was asked they stated they were not
responsible, it would not be lead agency for cleaning up the
area of having no responsibility for decontaminating buildings.
EPA did say that in answer to a question of Mr. Turner's.
I then asked them in light of Presidential Defense
Directive 62 issued in 1998 which specifically makes EPA the
lead agency for dealing with the consequences of hazardous
material discharges as a result of an enemy attack or any kind
such as that, did they stand by their testimony given under
oath?
They then said they were not lawyers and couldn't say yes
or no to that question and would get back to us, which they
have not done as of yet. I can't let that stand. The EPA ducked
that question and clearly in my opinion under PDD 62 and the
CERCLA law, is responsible, is the lead agency and is still
denying that responsibility.
That bodes ill for the future because no one is taking the
lead responsibility at this point in the Federal Government for
indoor cleanup or decontamination in case of a future attack or
catastrophe. No one has taken it in New York at all. The city
hasn't taken it, the State hasn't taken it, the Federal
Government hasn't taken it. It has left residents to their own
devices which is why I believe residents are slowly being
poisoned today by toxic environments and improperly and
inadequately cleaned up homes, schools, fire houses and offices
to this day and for the next 20 years.
Mr. Shays. Could the gentleman yield for a second? We will
go back and look at any part of the testimony and commitments
made to respond because the agencies have not gotten back to us
on certain issues and I need to make sure they have done it on
all.
Mr. Nadler. It's in the transcript a few pages after page
164.
Mr. Shays. We will do that and I want to make sure we don't
have it and have not been aware we have it. We will make sure
that is followed up.
Mr. Nadler. Dr. Howard, following up Mrs. Maloney's
question on how many people were affected, we have five
programs basically for firefighters, police officers and
different categories of first responders and then for residents
and workers in the area, you have the registry. The registry,
however, was limited by fiat to people who lived and worked
south of Canal Street. What justification is there in terms of
scientific validity of any information we get out of the
registry for an arbitrary line at Canal Street?
Dr. Howard. I will let Dr. Williamson handle that one.
Dr. Williamson. The New York City Department of Health and
Mental Hygiene as well as ATSDR put together a scientific
advisory committee of a group of illustrious scientists from
Columbia and Mount Sinai and Johns Hopkins as well as other
institutions. Those people in conjunction with ATSDR and New
York City Department of Health and Mental Hygiene decided.
Mr. Nadler. I don't care who decided, what was that based
on other than arbitrary ruling? Was there a Star Trek type
force field or a 3,000 foot high wall at Canal Street that
prevented the toxins from going north of Canal Street or for
that matter across the East River into Brooklyn? Do we have any
scientific basis for believing that a registry with that
geographic boundary has any validity at all?
Dr. Williamson. The CDC, ATSDR and New York City, along
with the Scientific Advisory Committee took a look at the
information provided by different groups including EPA, NASA
and ATSDR.
Mr. Nadler. What is that information? I don't care who said
it. I want to know what basis do we have for assuming that the
south side of Canal Street might have been polluted but the
north side of Canal Street was crystal pure and clear?
Dr. Williamson. The registry was set up not to say that
some groups were exposed and others were not. It was set up to
say what groups were most exposed.
Mr. Nadler. What basis do we have to assume that Canal
Street had any scientific validity whatsoever? I am not
interested in who said it did. What basis do we have that there
was something magic about Canal Street that said people who
lived and worked south of it were at an appreciably larger risk
and had to be looked at than people who lived across the street
or a block north of it?
I know the answer to this question I am going to ask is no
but I would like you to answer it. Did anybody do any
scientific assessment of where the toxins went? Did anybody do
sampling to say they went here and therefore this is where we
will do the registry and not there?
Dr. Williamson. There were different outdoor and indoor air
samples available and that information was taken into
consideration.
Mr. Nadler. Did anybody do what the Inspector General of
the EPA said should have been done which is to say, taking
samples in a concentric circle going outward from the World
Trade Center so you could say the problem is three blocks in
this direction and 3 miles in that direction or two blocks? Do
we have any scientific basis for assuming that the geographic
limitation of the registry has any scientific validity at all,
yes or no.
Dr. Williamson. I am not aware of that kind of detailed
analysis.
Mr. Nadler. Are you aware of any scientific analysis other
than an arbitrary, bureaucratic line?
Dr. Williamson. Only if taking into consideration the data
we had at hand from the different agencies.
Mr. Nadler. The data that was in-hand was incomplete and
showed lots of pollution north of Canal Street, in Brooklyn and
all over the place. What was the basis for drawing a line for
this registry at Canal Street or for that matter, the East
River?
Dr. Williamson. I am not aware of specifically how the
lines were drawn.
Mr. Nadler. Can you get back to us the information as to
the scientific basis for choosing Canal Street, assuming there
is a difference between north of Canal Street and south of
Canal Street and that there is a difference between lower
Manhattan and say Brooklyn Heights because all the satellite
photos showed that plume going all across Brooklyn.
We know that ash was sprawling across Brooklyn into Borough
Park and Brooklyn Heights and Coney Island and yet nobody in
those neighborhoods or north of Canal Street is allowed to be
in this registry which I maintain means the registry is
incomplete. Chinatown was also cutoff. What was the basis? We
know there was lots of pollution there.
What was the basis for saying nothing north of Canal,
nothing in Chinatown, nothing across the East River? I am not
interested in what bureaucratic agency said that's a good idea,
I want to know what is the scientific basis for drawing such a
line?
Dr. Williamson. Again, the point was not to exclude anyone.
We have to collect as much information in as comprehensive a
way as we can.
Mr. Nadler. With all due respect, that is rhetoric. Why was
it drawn at Canal Street and not at say Chambers Street or in a
5 mile radius or a 2 mile radius around the World Trade Center?
What basis was there for drawing the line that was drawn? What
was the scientific basis for drawing that line? I don't believe
there was any.
I'd like to hear what the scientific basis for drawing that
line is because if there wasn't a scientific basis, which I
believe to be the case, then the registry is not including as
many people as possible, it may be excluding 80 percent for all
we know of the people who ought to be in it.
Dr. Williamson. It is a good question and I will try to get
back to you on that but I must tell you that the registry was
set up with some very specific things in mind in order to try
to get as much information as possible given the resources and
the time to reach so that we could answer the questions you are
asking with the information we have.
Mr. Nadler. It is very nice, these conclusory remarks but
why Canal Street and not Chambers Street, the scientific
reason, not Howson Street but 14th Street, why not Chinatown,
why not look into Brooklyn, not an arbitrary, bureaucratic
answer but a scientific basis, what is different
scientifically, what evidence do we have that there is a
scientific difference between south of Canal and north of
Canal.
Mr. Shays. Will the gentleman yield? I would like to
resolve this now rather than later in part because I am
wondering if we did get information that we had requested in
the past.
I don't know if I would describe your analysis as
bureaucratic. What I am hearing you basically say in the end,
and I would like to pursue this and answer it one way or the
other, it seems to me it was not based on any scientific
knowledge. You made assumptions in order to begin the registry
and to begin to start to get information. Are you aware that
any of this was based on any scientific study that was done? I
am not aware of any.
Dr. Williamson. I am not aware that it was based on any
single scientific study. It was based on information that we
got from EPA, that we got from NASA and with the constraints we
had in order to try to get the registry up and running. With
estimates of the numbers of people we thought we were going to
be able to identify with the resources we had, we said this
would be a good first cut at getting as much information on the
people, we felt, not based on a particular scientific study but
all of the information.
Mr. Shays. Let me give the floor back to you, Mr. Nadler,
and allow you to pursue a little more but let me make this
point.
I think the answer to the question is no and I don't think
we need to wait for you to get back to us to say no. The answer
is, it is not based on any scientific information. You all
tried to do the best you could without scientific information,
it strikes me. That is what I am hearing you say. I do think,
Dr. Heinrich, you could maybe add some insight here and you
have the floor, Mr. Nadler.
Mr. Nadler. Let me just say, I don't want to take anything
away from officials who had to act in haste at the time. What
bothers me is that I do believe, and I have been involved in
this in some depth, that there is no valid reasons for those
arbitrary lines and maybe it was a good first cut, as you said,
but may be those lines should be expanded now.
In other words, if this registry is going to have validity
and the registry is also funded for 5 years. It should
obviously be funded for the lifetime of all the people involved
in it and it should also be expanded from the registry to
provide health treatments for those who need we find need it.
Beyond that, the geographic boundaries, if we are to have
any scientific validity, now that we have time, it is 3 years,
there ought to be what the Inspector General said a year ago
now or the white paper in my office said 2\1/2\ years ago,
there ought to be detailed samplings, indoor and outdoor and
concentric circles going out from the World Trade Center so we
can see where the problem was, so we can have a better
scientific estimate of where the people should be sampled, of
where the registry should be expanded.
I will guarantee you it is a lot wider than Canal Street
and what might have been a first bureaucratic cut based on
somebody's estimate at the time but not based on valid science,
which could not be based on valid science, because no one ever
did all that testing. In all the hearings we have held and
everyone has held, we know no one ever did the testing that
needed to be done. The Inspector General said that and no one
has done it since then.
It ought to be done now and the registry certainly ought to
be expanded not only in terms of time so that we can see the
effects beyond 5 years, if there are 20 year effects, which
there will probably will be, but also geographically.
Mr. Shays. I thank the gentleman. If you want to make a
comment, then I want to take the floor for my questioning.
Dr. Williamson. I would like to say again that is something
that we hope the registry will allow us to do, to identify the
areas and the subpopulations which need to continue to be
looked at and to expand depending on the information that we
get. The subpopulations right now that the other five studies
are not looking at quite so much but the registry has
information on, such as the residents and the school children,
that is one thing the registry is going to allow us to do.
As far as expanding the registry boundaries, what we did
was go through a very scientifically validated protocol from
peer reviewers, so we got that approved and if we were to
change the eligibility criteria or expand the eligibility
criteria geographically, we would go back through a very
scientific process of putting together a peer review.
Mr. Nadler. Excuse me. With all due respect, there was no
scientific process. There may have been people who decided to
OK what somebody decided but there was no valid scientific
process and if there was, we have asked you to submit that to
us which we have not yet seen.
Dr. Williamson. I am talking about justification for the
protocols.
Mr. Shays. Dr. Heinrich, do you have any contribution to
the dialog that has taken place in the last 10 minutes?
Dr. Heinrich. I do think that in the scientific literature,
we have seen some summaries now of the sampling of the air and
there is more information now than there was when it was set up
about what kinds of contaminants were in different geographic
areas. I think what you have heard is that as they were
establishing the registry looking at the resources they had at
hand, they really had to make some assumptions about who would
be the most likely to have the largest exposure. At least that
is what I have gleaned from the scientific reviews that we have
done.
One issue I would like to bring up is that to the best of
our knowledge, the registry doesn't necessarily have funds to
carry it forward for all 5 years since much of the funding has
already been expended.
Dr. Williamson. The registry only received initial startup
funds.
Mr. Nadler. If I could just ask Dr. Heinrich, what you just
said was very interesting. You said they made a decision as to
where to focus based on the available resources most
effectively which may very well be the case but that is
backward. That is saying we have a certain amount of resources
and therefore we can only do up to Canal Street.
Mr. Shays. Is that what you are saying because that is what
it sounded like to me.
Dr. Heinrich. There is no scientific justification for the
specific boundaries that we were able to find.
Mr. Shays. I think we have to acknowledge that is the fact.
I think we also have to acknowledge, given the resources
available, there were intuitive decisions made but nothing
scientific and I think we can agree on that. I appreciate my
colleague's line of questioning.
I wrestle with this. Having been in the Twin Towers,
thinking how tall they were, thinking of what was in them, the
marble, the construction material, it was pulverized, the
pressure and so on just pulverized all of that and it was
smothering until well past December or at least to December.
So intuitively, I make an assumption that this wasn't good
stuff and we would expect there would be some scientific
explanation as to what was there and what wasn't. We know it
wasn't done right away. We know workers like the firemen who
raced up the floors, the workers that raced to the sight and we
know they didn't wear masks, we know they didn't wear
protective gear and we also know like some of the Gulf war
syndromes, that they are sick. There are a lot of people who
are sick.
What I am seeing is a Federal, State and local effort to
deal with this and when Mrs. Maloney is asking the other very
pertinent question besides the question asked by Mr. Nadler,
she was basically saying who is in charge but you can tell me
who is in charge at the Federal level, who is in charge at the
State level and you can tell me who is in charge at the local
level but the problem is we have them all mixed together.
We have the New York Fire Department, they have their
system. We have the emergency medical and certain rescue in
Mount Sinai. We have other Ground Zero responders at the
registry. We have New York State workers who are being examined
as separate. We have the people living and working in the area,
they are under the registry. We have the Federal workers being
examined separately.
I think what I would ask you to do is tell me how do we
sort this out. I am not yet aware. My theory is this. If the
witnesses don't tell us, we are ignorant of what needs to be
done unless we find out from other sources. If they tell us
what we need to do and we don't do it, the blame rests on our
shoulders but right now, you are letting us off the hook. We
need to know what needs to happen to bring some sense to this.
Who wants to start me out in this process?
Dr. Howard. I will be the brave one. I would like to
suggest that the description you just gave of the very
difficult nature of characterizing the exposures that existed
for firefighters, other workers, volunteers, clean-up workers,
rescue and recovery workers, from this mix of physical and
chemical agents and combustion products represents what we in
science call a mixed exposure which really strains the
boundaries of our existing science in terms of understanding
what the health effects are from mixed exposures.
I think often science proceeds too slowly for all of us but
there is value in the fact that there are multiple different
programs looking at this same issue, in different populations,
granted, but they all will, over the next 6 to 12 months, be
producing peer reviewed science articles as the one I referred
to coming out this Friday in CDC's MMWR, that will help us
answer the question that Mrs. Maloney raised and everybody is
interested in: what is the prevalence of health effects on a
chronic nature that comes from this population, albeit a sample
of this population because we don't have the whole denominator.
I think what we need to concentrate on is making sure the
existing programs we have are, and I agree with the committee's
questions, coordinated well, they are speaking to each other,
the people they are representing, the participants, the
registrants and their representatives are fully involved in all
the advisory committees for those programs and those advisory
committees are coordinated.
Mr. Shays. The problem is committees create camels when
they are trying to create a horse. Is there a recommendation
from any of you of who should try to coordinate all this?
Should it be New York State, the Federal Government? The
Federal Government is providing most of the money it seems to
me. Is that correct?
Dr. Howard. Through FEMA. FEMA provides most of the money;
it comes to HHS, CDC, NIOSH, ATSDR and it goes out to the
individuals.
Mr. Robertson. The worker comp program is a State program.
There was $125 million for processing the claims and then two
pots of $25 million each, one for workers associated with
uninsured employers and the other for volunteers.
Mr. Shays. I really believe there has to be one person in
charge, maybe somebody who takes charge to coordinate and an
agreement on the part of State and local governments. If it is
the Federal Government, let them do it or the Federal
Government needs to agree that it is the State, but one person
basically looking to coordinate all this activity.
Tell me what steps should be taken to ensure that money and
programs will be in place to look at the long term effects.
This is running out, correct? So what do we do?
Dr. Howard. As I said previously, I think that the findings
that will be coming from the programs already funded, from the
registry, from the Mount Sinai program which will be funded for
5 years now, that data will speak louder than any of us at this
table and I think it will give us a direction as to where we
need to go in terms of continuing monitoring as well as
research.
Mr. Shays. When is it going to give us that direction?
Dr. Howard. I would say very shortly. I would say since
Mount Sinai has nearly 12,000 of its cohort participating,
monitoring results--and Dr. Levin will speak to this on the
second panel--will come out very shortly. As I say, the first
report will come out this Friday. I think the report will be of
concern.
Mr. Shays. But in the case of cancers?
Dr. Howard. That is a more long term thing and that is why
I said the findings that come out that we have will inform us
as we go through these periods of time.
Mr. Shays. We have one witness who has made some very
helpful recommendations. I would like recommendations from all
of you. What steps can we take to improve the process, how can
we make sure this is better coordinated, and so on.
Dr. Williamson. I would certainly talk for the registry.
One of the things we have done since September 11 is try to put
into place a rapid response registry program so that we will be
able to more quickly respond to emergencies. It is important to
be able to identify the expertise that would be available on an
as needed basis as quickly as possible to be brought to bear on
the impacted emergency situation as quickly as possible.
We are in the process at CDC and ATSDR of putting together
this rapid response registry program. This is one of the
recommendations we have seen as a result of September 11 that
we are trying to implement, we are hoping to be able to do
things on a much quicker basis.
Dr. Heinrich. Most of these programs are funded, I think
all of them are funded, through different organizations,
entities within CDC, and one approach might be that we ask CDC
to be more proactive in its role for coordinating these
programs. Certainly one effort it has already started it sounds
like is having centers that have responsibility for
coordinating the data because at a minimum, you would want
somehow to be able to look at these findings across these
various programs. It sounds like maybe you can do it for a
couple now but not for all.
It is the Federal Government that has the money but you
have to form a partnership with the people on the ground and I
think that is what they are trying to do but the mechanism for
that is the one they are using which is the cooperative grant
program.
Mr. Shays. If there is ever a justification for a committee
to write a report on recommendations, this is one of them
because if everybody is doing their job to the best of their
ability and in many cases, quite well, but they are all part of
what I view as not a coordinated effort. Mr. Robertson, what
happens when the $25 million in Federal funds designated for
volunteers and workers comp has disappeared?
Mr. Robertson. That is a great question and I think it
illustrates some of the points you have tried to make.
Basically, when those funds are used up, the benefits for those
volunteers are used up. We probably should do more thinking in
terms of trying to do some analysis now to figure out if and
when those funds will run out and what we will do under those
circumstances.
Mr. Shays. We need to get to the next panel. Is there
anything you felt needed to be a part of the record that is not
part of the record?
Mrs. Maloney. I have one brief question. In your testimony,
Dr. Howard, you talked about in collaboration ``with informal
network of occupational specialists, CDC helped facilitate the
production of a guidance document to assist community-based
physicians in the medical evaluation of patients exposed to the
disaster.'' I want to compliment CDC on their response to SARS
and sending out medical directives but I have not found one
doctor who got this communication. I have had many cases
reported to us where people went to doctors and were told they
had asthma and then found they really had glass in their lungs.
If there is such a document that you provided, probably one
of the leading authorities is Dr. Levin. Several of you
mentioned he is going to be releasing this report on September
10 and I would say he is definitely considered a leader in the
field. When I talked to him about this issue, he said he had
not received any guidance from CDC on the health response to
the World Trade Center disaster. So if you do have a document,
I would like to have that as part of the record.
I would like to close with what I think is the most
important aspect, that there is no health coverage for people
we call heroes and heroines and we talk about how they
selflessly gave their lives or injured themselves in helping
others and yet they have no health coverage. I had one
firefighter who 3 years later can no longer work. He said he
saved two lives, pulled them out of the debris. Now his health
condition is so terrible, he can no longer work and he has no
health coverage. What are we going to do for health coverage?
Mr. Shays. Let us close quickly with that question and get
on to our next panel. Is there a comment about health care
coverage?
Dr. Howard. It is hard to quickly respond to that.
Obviously health care provision is not contemplated in these
medical screening programs. It is a large public policy issue
and I have no expertise.
Mr. Shays. So the answer basically is they are not covered
and this rests on whose responsibility? Is this a Federal,
State or local responsibility? Is this something we need to be
debating? The bottom line is you are putting on the record
there is no health coverage?
Dr. Howard. My understanding is these are medical screening
programs, and medical monitoring programs, not medical
treatment programs, but in the case of the Mount Sinai program
with which I am most familiar, referrals are made for medical
treatment when appropriate.
Mr. Shays. To be continued.
Mrs. Maloney. And we have put in the ``Remember 9/11 Health
Act'' which would provide health coverage to those who were
injured at September 11.
Dr. Heinrich. Just one comment on that final point. Many of
us learned in public health that there is something ethically
wrong when you screen for disease, find it and then don't treat
it. That is the dilemma we are in.
Mr. Shays. Let us end on that note because that maybe will
get us all thinking about what we do about it.
Thank you. You have been an excellent panel. We appreciate
your work in government and your effort to make this a better
place and to help these victims. Thank you.
The Chair will now recognize our second panel. We have Dr.
Stephen Levin, co-director of the World Trade Center Worker and
Volunteer Medical Screening Program; Dr. Michael Lonski,
director, training and program development, Life Matters; Dr.
James Melius, administrator, New York State Laborers Health and
Safety Fund; Mr. Stan Mark, esq., program director, Asian
American Legal Defense and Education Fund; and Ms. Micki Siegel
de Hernandez, health and safety director, Communications
Workers of America.
Mrs. Maloney. May I request we place into the record a
report written by the Sierra Club, ``Pollution and Deception at
Ground Zero?''
Mr. Shays. Yes. Without objection, so ordered.
[The information referred to follows:]
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[Witnesses sworn.]
Mr. Shays. I would appreciate it if our witnesses could
give their testimony in 5 minutes. We have some time
restraints. We have some votes on the floor and testimony on
the floor we need to participate in.
Dr. Levin, thank you.
STATEMENTS OF DR. STEPHEN LEVIN, CO-DIRECTOR OF THE WORLD TRADE
CENTER WORKER AND VOLUNTEER MEDICAL SCREENING PROGRAM; DR.
MICHAEL LONSKI, DIRECTOR, TRAINING AND PROGRAM DEVELOPMENT,
LIFE MATTERS; DR. JAMES MELIUS, ADMINISTRATOR, NEW YORK STATE
LABORERS HEALTH AND SAFETY FUND; STAN MARK, ESQ., PROGRAM
DIRECTOR, ASIAN AMERICAN LEGAL DEFENSE AND EDUCATION FUND; AND
MICKI SIEGEL DE HERNANDEZ, HEALTH AND SAFETY DIRECTOR,
COMMUNICATIONS WORKERS OF AMERICA
Dr. Levin. I am Stephen Levin, medical director of the
Mount Sinai-Selikoff Center for Occupational and Environmental
Medicine and I am co-director of the World Trade Center Worker
and Volunteer Medical Screening Program.
I want to thank Congresswoman Maloney and you, Congressman
Shays, for inviting me to speak today about the health
consequences of exposures during World Trade Center recovery
efforts and what we see as the unmet needs of the people whose
health has been affected.
Our Center for Occupational and Environmental Medicine at
Mount Sinai has a long history of providing medical services to
the working people of the New York Metropolitan area, their
unions and their employers. We were well known to many of the
workers who responded to the attacks on the World Trade Center
Towers and to their unions and began seeing responders,
evacuees, returning office workers and residents of lower
Manhattan within a few weeks of the World Trade Center attacks.
It was clear to us almost immediately from this clinical
experience that the exposures to the mix of respiratory
irritants like pulverized concrete, hydrochloric acid mist and
fibrous glass present in the air at and near Ground Zero caused
respiratory problems, including sinusitis, laryngitis, asthma
and bronchitis, acid reflux from the stomach known as GERDS and
that the horrors that many had witnessed there caused stress-
related psychological symptoms and depression.
Responding to the appeal of organized labor who were aware
of the problems their members were developing and whose members
made up the majority of the workers and volunteers involved in
the rescue and recovery work, the cleanup and the restoration
of essential services in lower Manhattan, the New York
congressional delegation was successful in securing funds to
establish two medical screening programs, one for New York City
firefighters and another coordinated by our group at Mount
Sinai for all other World Trade Center workers and volunteers,
each to evaluate clinically some 12,000 World Trade Center
responders.
We are grateful to the Centers for Disease Control and to
the National Institute for Occupational Safety and Health for
their support and their assistance in establishing these
important programs whose mission it was to identify those who
were ill as a consequence of their World Trade Center efforts
and to make sure they were referred for appropriate care but
not to provide that care since no resources were made available
for treatment of World Trade Center related illnesses or for
additional medical testing and individual responder might need.
The firefighter and Mount Sinai programs have identified
similar health consequences among World Trade Center
responders, asthma, bronchitis, sinusitis, laryngitis,
digestive problems. These illnesses are remarkably persistent.
We analyzed what was found clinically among 250 of the
first 500 responders that we examined at the Mount Sinai
program and we began seeing responders in August 2002 far too
long after the event occurred and reported that nearly half of
these men and women still experienced at the time of their
examination at least one pulmonary symptom. By that, we mean
wheezing, chest tightness, cough or shortness of breath and
this was a minimum of 10 months after the September 11 event.
Over half had persistent ear, nose and throat symptoms and over
half had persistent evidence of psychological distress severe
enough to warrant further evaluation by a mental health
professional.
We recently updated our analysis to include the medical
findings of over 1,100 responders seen in our program and that
has been referred to several times today. It will be appearing
in the MMWR in 2 days. I am not allowed to cite actual data
from that figure until the report is released but I can tell
you this. The results point to similarly high rates of
persistent respiratory, digestive tract and psychological
disorders in this larger group.
We know that we have examined only a fraction of the
workers and volunteers whose health may have been affected by
their World Trade Center efforts and there is reason to believe
there are many who have not undergone screening examinations
who have persistent World Trade Center related illnesses.
Fortunately, funding has been obtained from the CDC and NIOSH
for medical followup exams of the World Trade Center responders
for the next 5 years and we will be able to bring in additional
workers for their baseline examinations during this first year
of the longer term program.
This program will give us an opportunity to evaluate the
course of these shorter term illnesses and to some extent the
response to various treatment approaches and to identify those
who still need medical and psychological care for those
conditions that occurred shortly after exposure but there
remains the issue of long term consequences of World Trade
Center related exposures. This witches brew of airborne
materials found at and near Ground Zero where a number of
carcinogens, cancer causing agents, including asbestos and the
class of compounds known as PAHs, polycyclic aromatic
hydrocarbons, the cancer causing chemicals in tobacco smoke.
If we are to detect the cancers that may develop as a
result of these exposures encountered during the recovery
effort at a time when treatment may be more effective, this
group of responders has to be followed for at least another 20
plus years since such cancers most often occur at least 20
years after the onset of exposure to the cancer causing agent.
I think our description of what happened after the World War I
cigarette smoking experience is exactly what we are concerned
about here.
This is an especially important issue for those who spent
long hours without respiratory protection on the pile at Ground
Zero where the fires burned until December 2001 and for the
workers who cleaned up the office and residential buildings
nearby Ground Zero, disturbing dust contaminated with
carcinogens day after day for months, no warnings, no training,
no masks.
Our screening pilot program has found many people who
needed followup care for the physical and emotional problems
they developed in the course of their World Trade Center
efforts. Making sure they obtain adequate care has been a
difficult challenge. For many, the workers compensation system
should have been a resource but for all too many it has been an
obstacle course of claims fought and delayed, almost impossible
to navigate for these heroes whose tolerance for additional
stress is often very limited. Many have no health insurance. At
Mount Sinai, we have received limited funds from private
philanthropic sources to provide care for these responders but
it isn't enough to meet the need.
I believe that a public health response to a public health
problem calls for Federal funding to pay for needed care. It
shouldn't be left up to a badly fragmented health care system
to ensure that the special testing people need and the
medication these responders need will be made available. Our
experience tells us it simply won't happen.
[The prepared statement of Dr. Levin follows:]
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Mr. Shays. Thank you, Dr. Levin.
Dr. Lonski.
Dr. Lonski. Thank you for inviting us to testify today.
The most helpful aspect of this hearing so far for me I
have to say is that so many people have turned out today to try
to continue to understand the after-effects of September 11 and
how devastating the impacts are and how tenacious the impacts
continue to be. For unless you live and work in New York or
have a particular interest or involvement or a capacity or
tolerance for understanding the depths of the painful after
effects, you miss the fact that each report you have heard
today from each of these agencies represents the personal
experiences of thousands and thousands of people, active and
retired, families and children, of people we have been able to
reach out to through our organization and collaborate with
other existing programs like Red Cross and Mount Sinai.
The fire, the police, the iron workers, the electrical
workers, the New York City agency employees, family members,
the National Guard, immigrant populations, there is a great
deal of despair because the World Trade Center attacks forever
altered the way many people see the world. The ensuing grief,
trauma, stress, anxiety and despair worsened existing problems.
It reactivated negative coping habits such as substance abuse,
smoking and overeating. It overwhelmed peoples' abilities to
control their emotional response and resulted in increased
violence, depression and especially isolation.
Just check the corner newsstand to witness the breakdown in
September 11 victims coping abilities, policemen setting bombs
in train stations, firemen brawling with chairs, volunteers
robbing banks, DWIs, extramarital affairs. People in New York
are scratching their heads and wondering will it ever end? We
are here to tell you from a mental health standpoint, this is
just the beginning. In New York, September 11 was a mushroom
cloud whose fallout is just now making itself known.
My name is Dr. Michael Lonski, Clinical Psychologist, Co-
Founder of Life Matters. With me here today are Dr. Evelyn
Llewellyn, also Clinical Psychologist, Co-Founder and Executive
Director of Life Matters; Stephen Careaga, Executive Director
of Firefighters National Trust who so generously underwrites
much of our fire union endorsed work with active and retired
first responders and families of the Fire Department of New
York and board member, Lou Chinal, a September 11 survivor who
retired from the Fire Department of New York after 29 years of
service and who guides and serves us.
Life Matters is a not-for-profit organization created to
meet the urgent need for counseling outreach and crisis
intervention after the attacks. We teach people to understand,
to cope and ultimately heal their trauma. We have embedded
clinicians, trusted peers and support personnel in firehouses
and social networks giving us the unique ability to quickly
find and help people before they take actions that harm
themselves or others. We have helped more than 30,000 persons
remain healthy, productive and involved on their jobs and in
their lives since the terror attacks. We continue to serve an
estimated 15,000 New Yorkers a year. Let us put those numbers
in perspective.
The Red Cross and the New York Psychological Institute
estimate there are between 125,000 and 150,000 Manhattan
residents alone who have fully diagnosable post-traumatic
stress disorder. Mount Sinai researchers working with Ground
Zero workers say more than 40 percent are suffering from mental
health issues. A recent study by Smithers at Cornell's School
of Industrial and Labor Relations found significant evidence of
continued depression, stress, anxiety and grief and an
increased risk for drinking problems among activity FDNY
members post-September 11. So in 3 years, we have reached
barely 20 percent of those who most dramatically need our help.
Let me explain what someone suffering from PTSD goes
through and why this is a problem for us all. PTSD moves on a
very predictable course from shock, to upset, to
dysfunctionality. Key to their trauma is their perception that
the world is not a safe place and that those in charge of
protecting us have failed to do so. They are continually
flooded with uninvited thoughts, flashbacks, day dreams and
rivalry, nightmares and night terrors. Everything begins to
look like a threat.
To protect themselves, they withdraw emotionally, buffer or
medicate themselves or act out. They engage in negative
behaviors to feel good, to feel alive or simply to feel
anything at all. They become so preoccupied with warding off
reminders that they lose their perspective of right and wrong.
They fail to discriminate between external and internal
triggers, judgment becomes impaired and anyone suffering from
PTSD can become a time bomb.
Their explosions and implosions rock us all. Suicide,
domestic violence, murder, divorce, criminal activity,
inappropriate sexual activity, feared and actual debilitating
disease and premature death. The loss of the talents and
contributions of people who are otherwise vital and valued
members of our society, that tragedy envelopes spouses,
children, family and friends in the cycle of trauma, grief and
loss is then renewed. We lose another generation and terror
wins, no further attacks, just collateral damage from the
original impact.
Those in need must understand that help is available and
self help is possible. Those in power must commit the
resources, financial and otherwise, required to prevent what
uniformed first responders call a BLEVE, a boiling liquid
expanding vapor explosion or be prepared to suffer in the
fallout. We must rebuild victims' trust and help them reconnect
with the world.
In our work, we continue to find ways to respect peoples'
privacy and their integrity while reaching through their self
protective isolation. Through flexible, tested and true,
theoretically based, proactive outreach, education and support,
we walk with them the paths of health, resiliency and hope. At
issue is not just one man's unease but a family's ability to
function and ultimately security for us all.
Thank you.
[The prepared statement of Dr. Lonski follows:]
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Mr. Shays. Thank you.
Dr. Melius, you have a very long statement. I will be
crushed if you don't get to your recommendations, so don't play
a trick on me and use up all the other time and force me to not
let you do your recommendations. I want to hear every one of
your recommendations. Don't leave them out.
Dr. Melius. As I have been sitting here, I have been
planning to skip most of the beginning of the statement and go
directly to the recommendations.
Mr. Shays. We really appreciate your recommendations. Very
helpful.
Dr. Melius. Thank you for holding this hearing and for your
continued interest in this issue. I think it is important.
Clearly in the absence of anybody at the Federal Government
level, the agencies being in charge, it is a badly needed
function. I really do applaud you for making this effort.
I represent people in the construction industry working for
the laborers' union in New York. Throughout the country, I also
work with our international union. I have also served many
years as an advisor for the firefighters union around the
country and have experience in dealing with other emergency
incidents with them.
My testimony covers the involvement of the construction
workers, what our exposures were, what some of our concerns
were. As I said, I will skip that and go to the
recommendations.
Mr. Shays. Your full statement will be in the record.
Dr. Melius. I would like to say that one thing that was
very important to us as a resource in New York that without
would have been a bigger problem to address and that was Mount
Sinai Hospital. They really had the expertise and the
capability to be of great assistance while these programs were
being set up. We were able to refer many people there for
treatment.
In my statement, I made six recommendations. I will go
through each. They deal with both the World Trade Center
medical followup as well as with followup for other incidents.
The first repeats a point that I think you already made. We
need a comprehensive and rapid medical response for these types
of incidents. We can't wait a year or two to get a program in
place. We need to have people in a coordinated fashion there
immediately. We need them there because we can't expect local
governments, local construction companies, local agencies to
have the expertise, the resources and the capabilities to deal
with it. This needs to be set up and included in planning
efforts for future disasters.
That program can't wait 2 years for setting up a medical
program or a year. It needs to be set up as quickly as possible
and needs to think about the need for monitoring. The issue
Congressman Nadler raised, we need and should have had and in
future incidents we need comprehensive environmental sampling
that will think about the possible health risks for people
involved. It is needed to help protect them and needed to be
able to address who is at risk, what type of future medical
programs do we need for those who have been exposed.
In my testimony, I mentioned some of the frustrations at
the time in dealing with both this incident and getting
environmental data, as well as with the simultaneous efforts
going on with the anthrax incidents where people in the medical
community or in my case representing workers involved, where it
was very frustrating to figure out who to call to get
information. That needs to be developed immediately after these
incidents.
Three, we also need to recognize these programs need to go
on for a long period of time. As I mentioned, I previously
worked for both Federal and State Government and have been
involved in other incidents usually involving fire departments
and response to toxic exposure. One was the Elizabeth chemical
control fire in New Jersey across from New York over 20 years
ago where there was an immediate response but then nothing was
done long term for the people involved.
It is difficult to budget that, to estimate what kind of
resources may be needed but we have to have a mechanism in
place whether through Homeland Security in these instances,
through Health and Human Services, I don't know but there
should be a program place that can fund those programs over the
long term, provide the support and guidance needed to implement
that type of program.
I think we have already heard some of the problems because
people develop programs in response to the resources that were
available rather than to projected needs. Because of that, we
may never know the number of people that were affected or will
be affected from the World Trade Center. This has to be done up
front. People have to know full resources will be available.
That program has to also be comprehensive and include
everyone. We can't make arbitrary decisions based on a street,
where people worked on a site, whether they worked or whether
they were a member of the general public that were exposed. It
may take some time to sort out, some people may need different
amounts of medical followup to different degrees but we need to
have that comprehensive program in place that covers everybody.
My fifth recommendation is that we need to think about the
future rights of these people. They need to be protected. This
addresses issues related to the workers compensation. A lot of
concern about the reluctance of our members and other union
members to participate in the registry programs, is because we
don't feel the rights of our members are being protected and
some of that information may be used against them 10 years from
now.
Mr. Shays. Give me a short example of how information can
be used against you.
Dr. Melius. For example, if someone does an analysis of
that data, especially given how incomplete it is, it only
covers such a small number, and there is a report that says we
found in a certain subpopulation no health effects.
What if one of our members who could fit the definition of
that subpopulation applies for workers compensation? Their
employer or insurance company may use the information in that
registry to contest that claim. Also, it is not completely
clear how their privacy will be protected in that registry.
Will somebody be able to go in and get information on them
and other participants and somehow use that to discriminate
against them in some way? We are particularly sensitive to that
given some of the problems with the workers compensation system
in New York as well as other States.
At the same time, it is important that we assure people
there is a long term, comprehensive, compensation program for
them. I applaud what you have done so far.
Finally is the treatment issue. The programs put in place
must include more work on treatment. There needs to be
resources for people to get treatment as well as some medical
research and effort made to try to determine what are the best
treatments. We don't know that for some of the conditions
related to the World Trade Center. We need to learn more about
that and provide resources.
In Mount Sinai and the other programs we are doing an
excellent job of referring people but not everyone has complete
health insurance, not every physician is as familiar with what
kinds of treatment might be needed and there are limitations.
People aren't getting the treatment they need because of that.
I think that is a disservice to them.
Thank you. I will end there and be glad to answer
questions.
[The prepared statement of Dr. Melius follows:]
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Mr. Shays. Thank you very much.
Mr. Mark.
Mr. Mark. I would like to start with my recommendations.
My clients at the Asian American Legal Defense Fund as well
as many of the community people I work with support the
``Remembering 9/11 Health Act'' and the fact that it would
cover many of the people in the lower East Side and Chinatown
who are without insurance or don't have the right insurance
coverage. We feel that particular legislation should be passed.
In addition, I think it also addresses some of the concerns
raised in the previous panel about coordinating efforts. One of
the problems we had in my office was we believed that the
funding for Mount Sinai would cover treatment as well but we
understand that it did not. When we heard that, we felt it
really undercut our efforts to try to get funding for our joint
clinic work with many of the organizations and specifically
partnering with Bellevue Hospital to address the health needs
of people in the lower East Side and Chinatown.
I would also mention that at this point we are now engaged
in this joint clinic. We can't wait for that coordination to
take place, we can't wait for that funding to take place, so in
the last 4 months or so, we have been going through 400
apartments and visited 400 families, we have done outreach
tables in the summer months reaching thousands of people,
trying to get people who were harmed by September 11 to
participate in this clinic program. We have now booked many
appointments for people to be screened and treated at Bellevue
Hospital at the Asthma Center. There is at least a month's
waiting list.
I am bringing this up as a point that studying the health
impact shouldn't be limited to Ground Zero but that they extend
way beyond Ground Zero and include communities of color in the
lower East Side and Chinatown which have not gotten sufficient
resources when it comes to health care.
My office is a civil rights organization. We represent many
garment and restaurant workers on the Lower East Side and
Chinatown who work in sweatshops. We also represent people who
are South Asians and Muslims, who have been denied due process
after September 11, and who have been detained preventatively
and secretly. We also have had work in voting rights and on a
weekly basis, we register people to vote at the courthouse,
about 300 people every week, who are sworn in as new, citizens
are registered to vote.
Since the September 11 attack, our Federal and local
agencies have not fully addressed the public health emergency
resulting from the collapse and fallout from the World Trade
Center. Lower Manhattan residents in the neighborhoods adjacent
to Ground Zero and surrounding areas such as Chinatown and the
lower East Side witnessed the attack and now live and work in
buildings that are contaminated or recontaminated with
asbestos, mercury, lead, dioxin and other toxic compounds. Many
have respiratory ailments and lung damage, skin rashes,
gastronomical disorders and other illnesses, or express anxiety
about their health and the health of their children. Many are
under the care of doctors while others living east of Ground
Zero are still seeking health coverage and medical treatment
for these illnesses.
Federal resources for treatment and long term studies must
be made available immediately to address the unmet health needs
of thousands of people who live and work in lower Manhattan.
Furthermore, resources must be made available to strengthen the
public health infrastructure in order to meet the threat of
chemical or biological attacks such as anthrax.
The full scope of the public health emergency and the
resulting environmental health impact have not been adequately
addressed and acknowledged by the Federal and local government
agencies. Government agencies did not conduct representative
sampling which uses detection devices laid out in concentric
circles from Ground Zero to collect air, dust and water samples
to measure the fallout, its range and to gather data.
The Center for Disease Control did not issue health
advisories urging health professionals to look out for the
symptoms of illnesses resulting from the fallout. For months,
the dust and stench filled the air throughout lower Manhattan
and seeped into the homes and offices, factories and
businesses. Trucks hauled debris from the fire at Ground Zero.
These trucks and dumpsters were parked on the streets on
the lower East Side and Chinatown, along Henry, Clinton and
Jefferson Streets and behind Stuyvesant High School. The debris
was eventually hauled to the Freshkills Landfill. The World
Trade Center dust circulated in the air and was blown
throughout lower Manhattan and continued to make people sick.
People who live and work in the buildings located in Battery
City, John Street, Cedar Street, Liberty Street, Pearl Street
and downtown Broadway have testified at public forums and
hearings about their poor health and the lack of adequate
testing and cleanup.
These residents continue to struggle with government
agencies to test and clean their buildings still contaminated
with dangerous heavy metals and toxic compounds that remain or
spread through heat and air conditioning systems, elevators,
carpets, window ledges and other common areas. Recontamination
remains a serious concern since the clean up 1 year after
September 11 was at best incomplete. Without full participation
and cooperation to clean an entire building, this leaves the
distinct possibility that recontamination would occur, even
assuming the initial cleaning for some apartments was properly
done for part of the building.
During 2002, at community town hall meetings, rallies and
marches in New York City and Washington, DC, thousands of
Chinatown residents assisted by a group known as Beyond Ground
Zero Network, which my office is part of, had demonstrated and
demanded that health care coverage, medical treatment and
research studies must be at the top of priorities for our
government agencies and institutions committed to rebuilding
New York. Health care must be made a priority with adequate
resources to cover long term treatment and studies for all
people affected by September 11 including residents of
Chinatown and the lower East Side.
Government officials and agencies must be held accountable
for the delay in initiating full health coverage, treatment and
studies covering the residents of Chinatown and the lower East
Side.
Given the wide scope of harm and the shortage of resources
targeted for health care and the research studies covering
people of color living in Chinatown and the lower East Side, we
need a stronger commitment from our leaders and institutions to
make these resources available.
[The prepared statement of Mr. Mark follows:]
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Mr. Shays. Thank you.
Ms. Hernandez.
Ms. Hernandez. Thank you for keeping this issue current as
it has been for us since the beginning.
My name is Micki Siegel de Hernandez. I am Director of
Health and Safety Programs for the Communications Workers of
America and CWA District I which is the northeast district of
CWA. I am also the Alternate Community Liaison to the EPA
Expert Technical Review Panel, so I also bring a collective
view from both residents and also labor groups in the area.
I am here today because of the effect the World Trade
Center has had on our members. Many of our CWA members have
developed September 11 related illnesses. We don't know what
the future holds in terms of chronic disease. We believe there
are still huge gaps that need to be filled in the government's
response to assess the September 11 health effects.
Our members have been part of both the evacuation, we had
11 members who died in the collapse of the Towers, we have
thousands of members who work in downtown Manhattan and we also
had thousands of members who worked at Ground Zero. At Ground
Zero, our largest group was the telecommunications workers from
Verizon and some from Lucent who repaired the
telecommunications infrastructure in New York City.
The report that Dr. Levin and also the GAO referred that
came from the WTC Worker and Volunteer Medical Screening
Program that looked at the sample of 250 of the first 500
responders, 44 percent of that group were CWA members.
The World Trade Center Worker and Volunteer Medical
Screening Program is severely underfunded. There have never
been Federal funds for treatment. It is a wonderful program but
it stops.
We also don't know what kind of followup care our members
are getting. The new Worker and Volunteer Medical Monitoring
Program is only funded for another 5 years, so we are talking
about approximately three exams for those workers who came for
their baseline and again, there is no future. We need some
early recognition and treatment of disease.
We also believe that the model in terms of the funding from
the Federal Government is what should be adhered to. We believe
the Consortium of Occupational Health Clinics should play the
key role in that continued program. We have also had experience
that when there is an employer-sponsored program, not only is
it not as good in terms of quality but that information remains
varied.
We have had that with two employer-sponsored programs, one
is with ABC, we represent broadcast technicians at ABC. They
did a company-sponsored program early on. We have never
received any information about the health of our members who
went through that program. With Verizon we also were
negotiating with them to have our members be allowed to go to
the World Trade Center Screening Program on paid work time. We
thought it was that important. We spent many months negotiating
and we thought we were getting close.
Coincidentally at about the time the World Trade Center
program started, Verizon sent a letter home to employees saying
they were going to institute their own program, employees could
go on paid work time to a number of clinics, not the Consortium
of the World Trade Center, and they could go for a one-time
free screening by the end of September. They would not be given
paid work time to attend the World Trade Center Worker and
Volunteer Medical Program.
We have asked Verizon since that time what has been the
response, what has been the analysis done about their program.
We have received no information. When we asked for the total
number, not even the names just the total of CWA members who
participated, Verizon's response was again this was not
information that was tracked, it is embedded in each member's
medical records and would require manual effort by a nurse to
go through each of the 900 plus records to make this
determination. When we asked for general reports or analyses of
the findings, not individual medical records, the response was
no such reports were prepared.
We also heard anecdotally from members that many of the
workers comp cases were being controverted meaning that the
employer just said no, we don't recognize this is the case, we
don't agree this should be a workers comp case, that it is not
work related.
We tried to get information from the Workers Comp Board to
find out for particular employers how many of the cases being
applied for were being automatically controverted. We never got
that information.
Mr. Shays. I don't understand. Is that information not
available or it is just not being shared?
Ms. Hernandez. From the Workers Comp Board? According to
what the GAO said this morning, the Comp Board claims they
don't track information in that way. I find that hard to
believe but we have never been able to get that.
We were able to go to one of the law firms that handled
many CWA cases of our members and they did manual search and
were only able to find some because of how the cases are
applied for in certain parts. They were able to locate some
cases only for New York City. Of 18 cases, Verizon cases that
were illness related not injury, 16 of them were controverted,
meaning the company just said no, we don't believe this is work
related. These were for a combination of respiratory illnesses
and PTSD.
We believe we need additional Federal funding for medical
services. There is a great need for medical services. We do not
support use of the funds for the World Trade Center Registry.
We do not believe the registry is a substitute for a medical
screening program, we believe it is diverting resources that
could be put to better use.
We also believe that due to poor design, the registry
cannot yield valid results, nor will it ever be able to answer
the questions it claims it will be able to answer about the
health of New Yorkers affected by September 11. Poor
participation rates further erode the validity of the data
collected. Without the statistical power as calculated in the
registry protocol, the true extent of specific health effects
such as asthma cannot be accurately determined. This can lead
to a gross underestimate of disease in the population of
affected workers and residents. There is also no apparent
system in place for decisions about what research will be
conducted using the registry data collected.
A couple of the recommendations would be adequate funding
for the World Trade Center Worker and Volunteer Medical
Program. In the event of future disasters, we need to have a
system in place so there is an immediate system workers can
turn to. We also need to broaden the scope of who we think of
as workers that respond to an emergency not just workers like
telecommunications workers but many public sector workers,
transit workers at the site.
We do not believe additional funding should be provided to
the registry as it is currently crafted and also would like to
recommend for future emergencies, agencies not be allowed to
get rid of laws that protect workers and the public as happened
with several of the agencies in the September 11 response such
as OSHA who was there on a consultant basis, the DEP who did
not enforce their laws for cleanup of asbestos in buildings and
so forth.
[The prepared statement of Ms. Hernandez follows:]
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Mr. Shays. Thank you very much.
Mrs. Maloney, you have the floor for 10 minutes.
Mrs. Maloney. Thank you all for your testimony.
Briefly with 10 words or less, I would like each of you to
respond to this question. Has the Federal Government responded
adequately and if not, what should they be doing or what needs
to be done? Dr. Levin? Has the Federal response been adequate,
yes or no, and very briefly, what needs to be done, your top
priority in 10 words or less?
Dr. Levin. The Government's response has been a partial
response. It has enabled us to identify illness among a small
section of those who responded and were affected by World Trade
Center exposures. What is needed is one, resources to evaluate
those who were exposed who have not yet been examined,
resources to provide treatment, additional testing when
diagnostic work has to be done beyond what screening programs
can do and we surely need to have in place a mechanism for a
rapid clinical response, an evaluation response and a treatment
response should there be disasters in the future that pose the
same sorts of risks.
Dr. Lonski. It has been mixed. The Federal Government's
response has been frustrating for us as an organization. I
think you heard today we are probably the only group
represented today who does treatment, proactive treatment to
not only directly with mental health stresses involved in
ongoing work as uniformed and civilian first responders and
civilian members after September 11 but we are the only
organization that links between the Chinatown community, the
Mount Sinais, the labor organizations and tries to get out the
word to those people about the kinds of screening and help that
are available behind the scenes.
Aside from the funding, we mentioned earlier through
Firefighters National Trust which allows us to do the only
educational, proactive outreach program for the Fire Department
of New York in which we go out to active and retired members
and help them, give them a tool to identify when they look at
themselves and the people around them who they care about what
you're looking for in terms of being operationally overloaded.
With that tool, those members can identify for themselves
and others much better than us. There will never be enough
professionals, never enough people from the counseling unit out
there. Once they know what to look for, they can help each
other get the help available but in terms of our Federal
funding through the efforts largely of Mr. Ron Dickens who is
the contract supervisor from the New York State Crime Victims
Board, the Grant Division, not the Compensation Division, we
were able to get two rounds of funding.
Unfortunately the frustration with that is the application
process for the first grant began in October 2002. Those funds
come from the Department of Justice. We were notified in April
2003 and this is for September 11 work, that we were approved
for a grant. The first amount of money didn't come to us until
July 2003.
Mrs. Maloney. That is a challenge but you are over your 10
words.
Dr. Lonski. What we need according to Mr. Dickens in
helping that process along with Federal funds is to reevaluate
the conventional methods of getting moneys out to take out some
of the middlemen like the New York State Crime Victims Board
and allow the Federal Antiterrorism and Emergency Guidelines to
give money directly to organizations like ours. That is
recommendation No. 1.
Two, in terms of the linkage between stress and medical
issues, there are so many studies going on that have been
designed by the best minds.
Mr. Shays. You are losing me here because her question was
much simpler.
Mrs. Maloney. We will come back to mental health. My
question is has the Federal Government response been adequate
or not and if not, what should we be doing briefly, Dr. Melius.
Dr. Melius. It is not an adequate program. It is not
comprehensive and nobody is in charge or can be held
responsible for the program.
The program needs to be expanded. We all made
recommendations on the way that needs to be done. The numbers
of people covered need to be expanded, the agencies need to
stop thinking of this as a scientific study. It needs to be
scientifically based but it needs to be a program for the
people that were impacted by the World Trade Center. That
includes many who aren't included in the current program.
Finally, it needs to consider the long term needs for
treatment, followup, counseling and that needs to be made a
part of the program also.
Mr. Mark. I would say that we must strengthen the public
health infrastructure in order to deal with public health
emergencies of the nature of September 11. In addition, I would
say there has to be a greater Federal role in coordinating as
suggested in your legislation by Government agencies such as
HHS or other appropriate entities in order to make sure that
the public health and the health of all the residents such as
folks in lower Manhattan including the lower East Side and
Chinatown, get the treatment.
Furthermore, I would say we need to continue to fund two
studies that provide for treatment as well as research for
people outside of the Ground Zero area. One is a study
conducted by SUNY at Stoneybrook, Dr. Anthony Szema and Dr.
Alan Iso and other co-authors, who showed a rise and spike in
asthma among Chinese children within a 5 mile radius from
Ground Zero. Those incidents that occurred at least warrant
further research to show the full impact of September 11.
Furthermore, Dr. Joan Reibman had a sample of about 2,000
people in the Chatham Green, Chatham Towers and Smith Projects
on the lower East side of Chinatown. She showed a spike in new
incidences of asthma and respiratory problems.
So in both instances, the health problems that resulted
from September 11 go way beyond the area downtown and Ground
Zero. It extends to all areas and neighborhoods. I described
that in my written testimony. You have to fund these
institutions such as the hospital as well as the asthma center
run by Dr. Joan Reibman and institutions like Charles B. Wang
Health Center which helped address the needs of people in the
local area.
I think there are other things mentioned in my testimony
but I would say there has to be better coordination with an
increased Federal role in making sure there are no gaps and
that the response is an anticipatory mode as opposed to a
reactive mode.
Ms. Hernandez. The quick answer is no, there has not been
an adequate response with a few exceptions. I would like to add
that there has not been an adequate response at the State level
either or at the city level.
Certainly to help the current problem, we need more funding
for the World Trade Center Worker and Volunteer Medical Program
that extends the boundaries to whoever needs it and includes
residents. We need a greater role for the Federal Government in
the coordination for this and for future events. We also need a
characterization.
We still don't know how much contamination is left in
downtown Manhattan. No workplaces have ever been assessed by
any agency, so we need a scientific characterization to
understand what kind of ongoing exposures may still be
occurring.
Mrs. Maloney. I want to note that all of your comments are
encompassed in the ``Remember 9/11 Health Act'' that is offered
by the chairman and myself. It covers treatment, continued
monitoring throughout the life of a person, research to find
out what these toxins mean and how to better prepare for them
and coordination under Health and Human Services. I urge you to
look at that bill and see if you can help us gain more support
because we do need at the least to cover the health needs of
the people who sacrificed their health coming to help others.
Dr. Lonski, the GAO recognized six entities who were
providing health monitoring but mental health was not being
monitored within any of these six programs. Is that correct?
Dr. Lonski. I don't know. I do know that we are not wired
to wait for the results of these scientifically based studies.
What we know is what you know. We know all the personal
stories, anguish and grief and the fears.
Mrs. Maloney. How great is the need? If we are not
monitoring, we have a sense from these programs how many people
are sick because they are monitoring them, they are documenting
their physical sickness is totally related to September 11.
That is one purpose of these monitoring programs. They are
scientifically documenting that people are sick, so we have a
sense of what is out there. We need a better sense but there is
no one documenting, according to the GAO report, mental health.
Dr. Lonski. We reported statistics earlier from the Red
Cross and the New York State Psychiatric Institute that
estimate that up to 150,000 New Yorkers, Manhattanites alone
have fully diagnosable PTSD, not talking about post traumatic
stress, not talking about the New York Times Sunday study that
links stress equals illness, not talking about the study that
was in the paper the other day, $300 billion in costs of
stress, health related stress issues in this country alone.
When we go into the firehouses, we don't argue. If we can
be the front end engine to get out there and let those people
know whether it is construction, Chinatown, wherever it is,
there is still help available, we need to know once we get them
that there is money from the Federal Government, the State, the
city, somebody can pay for the treatment. What kind of
treatment? Somebody used the term mixed exposures in describing
what happened at Ground Zero.
That reminded me of a couple of guys who recently got
married after September 11 who worked in what they described as
a sacred, toxic, waste zone for 7 months doing rescue and
recovery. What does that mean to them? It means they are afraid
to tell their wives they are afraid to have children with them
because they don't know genetically what is going to happen to
those babies and they don't know what is going to happen to
them 5, 10, or 20 years down the road. I don't now how much of
that is a medical condition brewing or how much is stress
related.
We know there isn't enough money to pay for these guys to
get the kinds of proactive medical screenings they are looking
for. They are looking for a full body scan once a year so that
if there is something percolating in their system, the experts
can help them get help right now for it. Open the windows of
opportunity to other populations.
Mr. Shays. I would like to ask a few questions.
First, I want to know who is getting help, who has such
good coverage that they are not at the table? Tell me who they
are? Is it the fireman? I believe that because there would be
such a public outcry if all those who were impacted were not
getting help. Some are getting help. I want to know who the
some are.
Dr. Levin. I can speak for the Fire Department's program. I
know it indirectly and I know they do provide care to the
firefighters who have been harmed by their exposure there. We
have in our program at Mount Sinai philanthropic sources to
provide care to some individuals we have identified mainly
through our screening program.
Mr. Shays. Are you choosing which lives and which dies?
That is an exaggeration but are you helping everyone or just
deciding who gets help and who doesn't?
Dr. Levin. We take on the responsibility of trying to
assure that every individual we identify who needs care gets
into care in some fashion, some through our supported programs,
some through ordinary medical channels if they have insurance,
some through workers comp in the relatively rare instances that
these occupational disease cases are accepted by the insurers.
Mr. Shays. The workers comp issue, they are sick plus they
can't work.
Dr. Levin. No. Some are working and ill, working with
symptoms because if they go out because of their illness, the
maximum they can get through a long and difficult process is
$400 a week in New York State if they are declared totally
disabled. Most of the people who went down to that Ground Zero
area were making much more than that in order to pay their
mortgage or rent. It is hard for them to accommodate to $400 a
week. What they don't get is access to medical care and their
medications.
Mr. Shays. Someone who has basically good insurance, the
firefighters are getting their health care needs but are
working on the job, still in the job.
Dr. Levin. Some.
Mr. Shays. And some are getting compensation. They aren't
limited to $400 are they?
Dr. Levin. The firefighters have a different program
entirely.
Mr. Shays. It strikes me that the firefighters, basically
because they do work in this kind of stuff, this is not new
experience as a general rule?
Dr. Levin. I would not agree with that. I don't think they
would either even though they have fought many fires including
some toxic fires. The breadth and seriousness of what they
encountered down there often without adequate respiratory
protection has yielded a rate of respiratory problems never
before seen.
Mr. Shays. That is because rather than putting out a fire
in the common sense, they were helping to do rescue and move
construction material in some cases?
Dr. Levin. Day after day, 12-16 hour days on that pile.
Mr. Shays. What are the parallels and I have no right as a
doctor given that I am not to make these analyses but I will
tell you as someone who sat in on countless hearings on
illnesses, the one thing that impressed me is when people are
under stress, their system functions differently and may become
more receptive to serous illness. There was huge stress here.
Tell me who is getting help.
Mrs. Maloney. May I ask a clarifying question? Dr. Levin,
if someone is a firefighter and comes to you for help, his
insurance and his job covers it but if they become so ill they
can no longer work, don't they lose their health coverage?
Dr. Levin. Let us not talk about the firefighters who are
in a very particular position. The construction workers are
exactly as you said.
Mrs. Maloney. Workers have told me they have become so sick
that they lose their job and then don't have health benefits.
Mr. Shays. That is why I want to go there. It is easier to
find out who is getting health care and maybe the compensation
because there are less of them. Firefighters would tend to have
a better shot.
Dr. Levin. Yes.
Mr. Shays. Who else?
Dr. Melius. I think the unionized construction work force
would as long as they can continue to work. Once they stop
working either because of economic down turn or because they
are disabled, then they lose their health coverage after a
period of time, so they become more vulnerable. The other
factor depends on the health condition they have and the type
of treatment, how much coverage they have, how much medication,
how much of the medication is covered. Medication costs can get
into the thousands of dollars per year that may or may not be
covered depending on their health plan.
We have people that work in construction and other jobs
with no health coverage and are certainly the most vulnerable.
Mr. Shays. The people who can come to the hospital to
basically have their condition reviewed are workers not
residents?
Dr. Levin. Right. The residents can come to our Center for
Occupational and Environmental Medicine but cannot get access
to that screening program that is federally funded.
Mr. Shays. But you do not take on the firefighters or you
do?
Dr. Levin. The New York City firefighters have their own
program and are not eligible to be screened in our program.
They can come to us for treatment.
Mr. Shays. Their treatment is covered by their own plans?
Dr. Levin. If that is possible. Wherever that isn't
available, we will provide care with no out of pocket expenses
for them as we do for all the others who come to us in the
treatment program because our mission is to provide care with
no out of pocket expenses. We will accept insurance wherever we
can get it to preserve the resources of the program.
Mr. Shays. You have very important points you want to make.
Dr. Lonski.
Dr. Lonski. I would like to echo what Dr. Levin said. If
you think it is confusing to you about what is available, you
should see what happens to these guys and their family members
across the board when they try to go for help. They are afraid
to go. Once they get into the system and start to file the
paperwork as soon as it breaks down, there is almost an
immediate feeling of what is the use. It is the same old
nonsense over and over again. I would recommend to the extent
that a clear communication can come out of these hearings about
what exactly is available with all the six different surveys
going on, how to get in, who is still eligible, what the filing
dates are, that would be helpful because the people who are
still trying to get help can't find their way through the
morass and don't have the emotional stamina to put up with it.
Mr. Shays. We would have the returning soldiers from the
Gulf war testify after the government would say no one is sick
and their testimony was they were sick, and you could tell they
were sick and they had documentation they were sick and were
being told it was basically post-traumatic stress disorder and
it wasn't physical. We then started to switch it so they went
first and the Government came second. So we got through that
hurdle and the Government finally acknowledged it.
There was enough pressure on us that we needed to deal with
this issue. I am not feeling the pressure from the ill folks
and maybe partly it is because it was the war in the Gulf, it
was clearly a Federal responsibility, here because it is all
three, it is being deflected.
Dr. Levin. I think what also is happening is that many
people who do have insurance or have the capacity to pay out of
pocket which is more limited, are seeking care through the
regular general medical health care system. The problem that
has been identified and talked about is the care people get
from the regular medical system is very uneven. That is because
physicians in our country are not trained in occupational and
environmental medicine and have too little experience knowing
how to deal with such.
Mr. Shays. The parallel to the Department of Veterans
Affairs was out of the thousands and thousands of doctors there
were only two that knew this kind of treatment. Our military
was in their workplace, it was toxic, there were parasites,
they were being given medicines they shouldn't be given, drugs
they shouldn't be given and so forth.
First, we didn't properly monitor from day one and it would
strike me any report this committee comes up with there should
be a Federal immediate response to any type of tragedy that
comes in and tests the condition of the work environment. We
understand why that didn't happen in this instance. We wanted
to jump in right away but there needs to be a mechanism to do
that. There needed to be absolute requirements on the workers
that they have proper equipment and if they wanted to go in,
people should have held them back until they had better
equipment because in trying to save a life, they put their own
lives in huge danger.
It seems to me you need to monitor and we need to sort out
whether it is Federal, State or local but there needs to be the
monitoring, Federal dollars maybe but constant monitoring of
the condition, knowing the pool we are dealing with and then
they need counseling, health care. Lord knows what it must be
like for the families and individuals involved.
I am going to encourage my staff to do some additional
homework on this without a hearing to try to make an
assessment. I don't think we can get a report done before we
adjourn but it will be my goal to make sure this subcommittee
follows up on this because it simply has to happen.
Mrs. Maloney. I wanted to thank you for your leadership and
state at the very least we can followup on Dr. Lonski's
recommendation that we come forward with a listing of what is
available, where people can go which would be helpful. All of
you pointed out we need treatment and I thank all of you for
your work.
Mr. Shays. Dr. Lonski.
Dr. Lonski. Our treatment request is for funding because in
3 weeks our Department of Justice grant will expire, in 3 weeks
and there is no, as of yesterday morning from Mr. Dickens,
there is no Federal funding available to organizations like
ours direct or through grants.
Mr. Shays. When does other funding run out?
Mr. Levin. For the monitoring program, we will continue for
another 5 years.
Mr. Mark. In the current registry, I believe there would be
much greater participation if it was publicized that people
would be given treatment as well and not wait 2 years later for
its startup. I would add that any type of monitoring or
response must include an educational campaign not only for
doctors but come from the CDC, and also a campaign that
actually tells people what is available and they will get
treatment. That would be an incentive to step forward and
participate in long term studies.
Ms. Hernandez. I agree with what Stan said. We need a long
term solution to this problem. One thing clear from the
beginning is every step of the way has been frustration and
piecemeal and if we can start pulling that together, I think
that would go a long way to protecting the health of our
workers and the residents.
Mr. Melius. I have nothing further.
Mr. Shays. I appreciate your getting us started with
recommendations. We appreciate the testimony of all our
witnesses on both panels.
If there is nothing further, we will adjourn.
[Whereupon, at 3:05 p.m., the subcommittee was adjourned.]
[The prepared statement of Hon. Edolphus Towns and
additional information submitted for the hearing record
follows:]
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