[House Hearing, 108 Congress]
[From the U.S. Government Printing Office]




                               before the


                                 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


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                     TOM DAVIS, Virginia, Chairman
DAN BURTON, Indiana                  HENRY A. WAXMAN, California
CHRISTOPHER SHAYS, Connecticut       TOM LANTOS, California
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
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
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 

                    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 

                CHRISTOPHER SHAYS, Connecticut, Chairman

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

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



                      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:]

    [GRAPHIC] [TIFF OMITTED] T8999.001
    [GRAPHIC] [TIFF OMITTED] T8999.002
    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 






    Mr. Shays. I thank the gentleman.
    At this time, the Chair would recognize John Duncan from 
    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 
    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 
    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 
    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 
    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 




    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.


    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 
    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 
    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 
    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 
    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 
    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 
    [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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    Mr. Nadler. It's in the transcript a few pages after page 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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.


    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    [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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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 
    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