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ASSESSING SEPTEMBER 11TH HEALTH EFFECTS

HEARING

BEFORE THE

SUBCOMMITTEE ON NATIONAL SECURITY,

EMERGING THREATS AND INTERNATIONAL

RELATIONS

OF THE

COMMITTEE ON

GOVERNMENT REFORM

HOUSE OF REPRESENTATIVES

ONE HUNDRED EIGHTH CONGRESS

SECOND SESSION

SEPTEMBER 8, 2004

Serial No. 108–283

Printed for the use of the Committee on Government Reform

(

Available via the World Wide Web: http://www.gpo.gov/congress/house

http://www.house.gov/reform

(II)

COMMITTEE ON GOVERNMENT REFORM

TOM DAVIS, Virginia, Chairman

DAN BURTON, Indiana

CHRISTOPHER SHAYS, Connecticut

ILEANA ROS-LEHTINEN, Florida

JOHN M. MCHUGH, New York

JOHN L. MICA, Florida

MARK E. SOUDER, Indiana

STEVEN C. LATOURETTE, Ohio

DOUG OSE, California

RON LEWIS, Kentucky

TODD RUSSELL PLATTS, Pennsylvania

CHRIS CANNON, Utah

ADAM H. PUTNAM, Florida

EDWARD L. SCHROCK, Virginia

JOHN J. DUNCAN, JR., Tennessee

NATHAN DEAL, Georgia

CANDICE S. MILLER, Michigan

TIM MURPHY, Pennsylvania

MICHAEL R. TURNER, Ohio

JOHN R. CARTER, Texas

MARSHA BLACKBURN, Tennessee

PATRICK J. TIBERI, Ohio

KATHERINE HARRIS, Florida

——— ———

HENRY A. WAXMAN, California

TOM LANTOS, California

MAJOR R. OWENS, New York

EDOLPHUS TOWNS, New York

PAUL E. KANJORSKI, Pennsylvania

CAROLYN B. MALONEY, New York

ELIJAH E. CUMMINGS, Maryland

DENNIS J. KUCINICH, Ohio

DANNY K. DAVIS, Illinois

JOHN F. TIERNEY, Massachusetts

WM. LACY CLAY, Missouri

DIANE E. WATSON, California

STEPHEN F. LYNCH, Massachusetts

CHRIS VAN HOLLEN, Maryland

LINDA T. SANCHEZ, California

C.A. ‘‘DUTCH’’ RUPPERSBERGER, Maryland

ELEANOR HOLMES NORTON, District of

Columbia

JIM COOPER, Tennessee

BETTY MCCOLLUM, Minnesota

———

BERNARD SANDERS, Vermont

(Independent)

MELISSA WOJCIAK, Staff Director

DAVID MARIN, Deputy Staff Director/Communications Director

ROB BORDEN, Parliamentarian

TERESA AUSTIN, Chief Clerk

PHIL BARNETT, Minority Chief of Staff/Chief Counsel

SUBCOMMITTEE ON NATIONAL SECURITY, EMERGING THREATS AND INTERNATIONAL

RELATIONS

CHRISTOPHER SHAYS, Connecticut, Chairman

MICHAEL R. TURNER, Ohio

DAN BURTON, Indiana

STEVEN C. LATOURETTE, Ohio

RON LEWIS, Kentucky

TODD RUSSELL PLATTS, Pennsylvania

ADAM H. PUTNAM, Florida

EDWARD L. SCHROCK, Virginia

JOHN J. DUNCAN, JR., Tennessee

TIM MURPHY, Pennsylvania

KATHERINE HARRIS, Florida

DENNIS J. KUCINICH, Ohio

TOM LANTOS, California

BERNARD SANDERS, Vermont

STEPHEN F. LYNCH, Massachusetts

CAROLYN B. MALONEY, New York

LINDA T. SANCHEZ, California

C.A. ‘‘DUTCH’’ RUPPERSBERGER, Maryland

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

(III)

C O N T E N T S

Page

Hearing held on September 8, 2004 ....................................................................... 1

Statement of:

Howard, John, Director, National Institute for Occupational Safety and

Health, HHS, accompanied by Dr. G. David Williamson, Director, Agency for Toxic Substances and Disease Registry, HHS; Dr. Janet

Heinrich, Director, Health Care-Public Health Issues, GAO; and Robert

E. Robertson, Director, Education, Workforce and Income Security,

GAO ................................................................................................................ 18

Levin, Dr. Stephen, co-director of the World Trade Center Worker and

Volunteer Medical Screening Program; Dr. Michael Lonski, director,

training and program development, Life Matters; Dr. James Melius,

administrator, New York State Laborers Health and Safety Fund; Stan

Mark, esq., program director, Asian American Legal Defense and Education Fund; and Ms. Micki Siegel de Hernandez, health and safety

director, Communications Workers of America .......................................... 122

Letters, statements, etc., submitted for the record by:

De Hernandez, Micki Siegel, health and safety director, Communications

Workers of America, prepared statement of ............................................... 164

Heinrich, Dr. Janet, Director, Health Care-Public Health Issues, GAO,

prepared statement of ................................................................................... 37

Howard, John, Director, National Institute for Occupational Safety and

Health, HHS, prepared statement of .......................................................... 23

Kucinich, Hon. Dennis J., a Representative in Congress from the State

of Ohio, prepared statement of .................................................................... 7

Levin, Dr. Stephen, co-director of the World Trade Center Worker and

Volunteer Medical Screening Program, prepared statement of ................ 125

Lonski, Dr. Michael,director, training and program development, Life

Matters, prepared statement of ................................................................... 132

Maloney, Hon. Carolyn B., a Representative in Congress from the State

of New York:

Prepared statement of ............................................................................... 15

Report written by the Sierra Club, ‘‘Pollution and Deception at

Ground Zero’’ .......................................................................................... 106

Mark, Stan, esq., program director, Asian American Legal Defense and

Education Fund, prepared statement of ..................................................... 154

Melius, Dr. James,administrator, New York State Laborers Health and

Safety Fund, prepared statement of ............................................................ 143

Robertson, Robert E., Director, Education, Workforce and Income Security, GAO, prepared statement of ................................................................ 72

Shays, Hon. Christopher, a Representative in Congress from the State

of Connecticut, prepared statement of ........................................................ 3

Towns, Hon. Edolphus, a Representative in Congress from the State

of New York, prepared statement of ........................................................... 179

Turner, Hon. Michael R., a Representative in Congress from the State

of Ohio, hearing transcript of October 2003, pages 164 and 165 .............. 91

(1)

ASSESSING SEPTEMBER 11TH HEALTH

EFFECTS

WEDNESDAY, SEPTEMBER 8, 2004

HOUSE OF REPRESENTATIVES, SUBCOMMITTEE ON NATIONAL SECURITY, EMERGING

THREATS AND INTERNATIONAL RELATIONS, COMMITTEE ON GOVERNMENT REFORM, Washington, DC.

The subcommittee met, pursuant to notice, at 12 p.m., in room

2247, Rayburn House Office Building, Hon. Christopher Shays

(chairman of the subcommittee) presiding.

Present: Representatives Shays, Tierney, Kucinich, Duncan,

Maloney, Turner, and Ruppersberger.

Also present: Representative Nadler.

Staff present: Lawrence Halloran, staff director and counsel; J.

Vincent Chase, chief investigator; R. Nicholas Palarino, Ph.D., senior policy analyst; Kristen McElroy, professional staff member; Robert Briggs, clerk; Andrew Su, minority professional staff member;

and Jean Gosa, minority assistant clerk.

Mr. SHAYS. A quorum being present, the Subcommittee on National Security, Emerging Threats and International Relations

hearing entitled, ‘‘Assessing September 11th Health Effects,’’ is

called to order.

Three years after the cataclysmic attacks on the World Trade

Center, shock waves still emanate from Ground Zero. Diverse and

delayed health problems continue to emerge in those exposed to the

contaminants and psychological stressors unleashed on September

11. An effective response to that attack and future terrorist assaults requires a coordinated, sustained program to monitor, diagnose, research and treat those wounded.

Last October, this subcommittee convened in New York City, to

discuss the rigor and reach of Federal, State and local efforts to assess the public health impacts of September 11. We heard hopeful

descriptions of outreach networks and monitoring protocols, we

heard criticisms of slow funding and arbitrary deadlines and we

heard concerns about a patchwork of short term solutions to an admittedly long term set of needs Today, we revisit those issues asking what more has been learned about the health effects of September 11 and what yet needs to be done to understand and repair the

physical and mental toil of catastrophic terrorism.

It is a complex challenge. As we will hear in testimony from the

Department of Health and Human Services and the Government

Accountability Office, Federal leadership and resources continue to

play a critical role in helping public health and disability comVerDate 11-MAY-2000 12:10 Mar 28, 2005 Jkt 000000 PO 00000 Frm 00005 Fmt 6633 Sfmt 6633 D:\DOCS\98999.TXT HGOVREF1 PsN: HGOVREF1
2

pensation systems adapt to the demands of an urban battlefield.

Make no mistake, the firefighters, the police, the emergency medical personnel, the transit workers, the construction crews and other

first responders did not go to work on September 11, they went to

war.

In the days and weeks that followed, those who labored and lived

near Ground Zero, fought to survive against the subtle, prolonged

assault on their bodies and minds. Many are still fighting. For

them, and for future casualties in this all too modern war, the national public health response has to be vigilant and implacable as

the enemy we face.

Our second panel of witnesses brings firsthand knowledge of the

medical shadow still cat by the falling towers of the World Trade

Center. We appreciate their time and insights. We look forward to

the testimony of all our witnesses.

At this time, the Chair would recognize the gentleman from

Ohio, Mr. Kucinich.

[The prepared statement of Hon. Christopher Shays follows:]

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Mr. KUCINICH. Good afternoon and good afternoon to the members of the subcommittee.

I want to thank the witnesses here today. I know this is an emotional topic for many of them.

It has been 3 years since the horrific loss our Nation suffered on

September 11. Yet, while our Nation still grieves and mourns the

families, friends and heroes we lost in that tragedy, hundreds of

thousands, possibly even millions of New Yorkers carry an even

more salient reminder, the lingering physical and mental wounds

which persist to this day, but we cannot cure those wounds when

we still know little about what caused them.

We know intuitively that rescuers, residents, workers and people

in the vicinity of the World Trade Center breathed in dust, smoke,

asbestos and toxic substances that day and for many days after the

attack. We know that the psychological impact of that day would

haunt those closest to the scene and mental health care would be

needed.

Yet, the questions we ask in Congress today are simple but in

some cases they are still not answerable 3 years later. Who became

ill or may still be ill and doesn’t know it, what harmful substances

were inhaled and what toxic amounts, are these people receiving

treatment, are we working together at all levels, Federal, State and

local to provide the care and followup needed?

The picture that is slowly developing, and that has been confirmed by the work of GAO to be presented today, is of woefully

inadequate funding and neglect in the medical care of those affected. According to GAO, thousands of New York rescue and recovery workers have not yet been screened. Many of them have not

received the workers compensation they are due and many of them

do not have any medical insurance at all.

GAO also notes that hundreds of New York firefighters have

been forced to give up their livelihood, been placed on medical

leave and had to end their careers due to lingering respiratory illnesses. There is even a new condition affecting hundreds of these

firefighters coined the ‘‘World Trade Center Cough’’ which is characterized by an acute, persistent cough with severe respiratory

problems. Much more needs to be found out and be done.

First of all, we need to know how widespread the problem is.

There is no longer any monitoring of New York State employees as

the program has been discontinued. The World Trade Center

Health Registry Program to screen civilians closed its enrollment

as of September 1, though only 55,000 out of an estimated 400,000

affected civilians were screened. Rescue and recovery workers have

been slow to register and be screened due to lack of treatment options, boundary disputes, interagency disputes and other delays.

We need to act and act in unison for the long term. There is no

plan to fund long term medical research into September 11 illnesses. We do not know what if any debilitating conditions may require years to appear such as cancer will end up being prevalent.

Where the monitoring programs were designed to last 25 years,

they are currently only funded for 5. Private and charitable donations are drying up and the current administration has been slow

to act.

6

For example, Congress allocated $90 million for the September

11 health screenings last year but this money was only awarded to

New York City medical institutions this spring. Of the $175 million

appropriated by Congress for the New York State Workers Compensation Board, millions have been spent on processing claims

and preparing for future terrorist attacks but almost none has gone

to actual reimbursement to the Uninsured Employer Fund, established for worker and volunteer benefits. Moreover, not a single

penny has gone directly for treatment of these injuries. If we can

raise and dispense over $500 million in financial assistance to

100,000 for the September 11 Victim Compensation Fund, then we

can do the same for those still suffering physically and mentally

today.

No amount of money can alleviate the loss and pain many shared

that day but we all need to give a better effort.

I want to thank both Chairman Shays and Mrs. Maloney for

their persistent oversight efforts to keep the management of and

funding of these programs in the spotlight. This cannot and must

not be a partisan issue, it should not be a matter of misinformation

or red tape. It would be unconscionable to abandon our responsibility to care for each and every one of those victims today and into

the future.

Thank you, Mr. Chairman.

[The prepared statement of Hon. Dennis J. Kucinich follows:]

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Mr. SHAYS. I thank the gentleman.

At this time, the Chair would recognize John Duncan from Tennessee.

Mr. DUNCAN. I have no statement, Mr. Chairman.

Thank you.

Mr. SHAYS. I thank the gentleman.

At this time, the Chair would recognize John Tierney from Massachusetts.

Mr. TIERNEY. Thank you.

I am going to waive my remarks so that we can get to the witnesses, but I believe Mrs. Maloney probably has some comments to

make.

Mr. SHAYS. Before recognizing Mrs. Maloney, let me thank her

for her persistent in encouraging us to look at this issue. We had

a hearing in New York City which was very enlightening. I am

sure this hearing will be as well. She has been in the forefront of

this issue and we do thank her.

Mrs. Maloney, you have the floor.

Mrs. MALONEY. I really want to thank Chairman Shays for holding the second hearing on the health effects of September 11. Back

in October, at the end of the first hearing, Congressman Shays

promised to continue working on this topic and once again, you

have shown that you are a man of your word. We have tabulated

how many hearings have taken place and only five have taken

place on the after effects of September 11 health effects and two

were held by Congressman Shays. So my constituents join me in

thanking you for your leadership on this issue.

It is a great pleasure for me to welcome many New Yorkers here

today and many have been working extremely hard on problems

since September 11. I am particularly interested in what the Government Accountability Office has found as a result of their research into the health effects of September 11 as well as the Federal assistance for September 11 workers compensation costs.

After reading the prepared testimony of our witnesses, there are

still some basic questions that have not been answered. Three

years after September 11, it seems that we don’t even know how

many people are injured or how many people still need medical

care, or who in the Federal Government is even responsible for

looking into it or taking account of it. I am interested very much

in what GAO has to say about this.

I am also interested in hearing about what is known with regard

to the high levels of injury and illnesses emerging as a result of

the attacks. For example, the most comprehensive program to date

is one that the New York delegation, led by Senator Clinton, had

to fight extremely hard to fund, the national program offering actual medical screening exams coordinated by the Mount Sinai Center for Occupational and Environmental Medicine.

Preliminary analysis of the World Trade Center responders, both

workers and volunteers in that program, 12,000 of them have

shown, well over 50 percent required physical or mental health

treatment and/or aid immediately. Even months after the September 11 disaster sometimes the illnesses did not come up. I just met

a firefighter 2 weeks ago who showed no illness until he went to

another fire and immediately lost his voice and had tremendous

13

problems breathing and can no longer serve as a firefighter. This

did not show or come to action until 3 years later and the doctors

think it is directly related to September 11.

I am also very interested in hearing from Dr. Levin, regarding

the current state of the program. The Johns Hopkins December

2001 study which is reported in the GAO report found that among

non-firefighters, among those who reported no previous history of

lower respiratory symptoms, 34 percent reported developing a

cough and 19 percent reported developing wheezing. I am also very

interested in hearing about the NIOSH survey of Federal employees working near the World Trade Center that found that 56 percent of respondents reported having a cough.

What is astonishing to me is that of the 10,000 Federal workers

who responded to the World Trade Center, GAO found that only

412 exams have been completed. When we have seen that up to 90

percent of firefighters have reported health problems immediately

after September 11, why have less than 5 percent of the Federal

employees who responded been examined for illness?

The one program we have that even attempts to track everyone

is a phone survey that was supposed to track between 250,000 and

400,00 responders, area workers and residents, but only 55,000

have enrolled according to the report. There are so many challenges with this so-called registry that even some unions who had

members working at Ground Zero, are telling their members not to

participate due to privacy concerns.

All total, we have six different programs that are tracking in

some way the health effects of September 11, some are as simple

as a phone call or a mailed questionnaire, while others actually involve a doctor and a health exam. However, none include any treatment and no where can I see a Federal coordination among them.

I find this outrageous that we repeatedly call the men and women

who rushed to Ground Zero heroes and heroines. We describe it as

a war zone but if they do not have health coverage or have lost

their job because of their health, there is no health coverage available for them. This needs to be changed and it is a very, very important issue.

Instead of coordination, it looks like you have a number of different programs going in different directions with different ways of

collecting and analyzing data. I don’t think this is the way to treat

the heroes of September 11.

I hope to hear from our witnesses from the administration who

in the Federal Government is in charge, who in the Federal Government is worried about these people and who can the victims of

September 11 turn to for help. We literally have thousands of rescue workers, area workers, local residents who are sick, yet we

have had to fight every step of the way just to set up a program

that monitors and documents they are sick. We still do not have

treatment.

One possible avenue to receive some sort of compensation is the

funding provided to the workers compensation. It is absolutely unbelievable to me with so much demonstrated need that GAO finds

in its testimony that of the $25 million Congress appropriated for

injured volunteers, only $456,000 has been spent and only 31 percent of their claims had been resolved by the State.

14

I hope to hear more about this from our witnesses today including what definition the State gave them for the term resolved. If

you were to tell me that we would not provide care for the heroes

who so selflessly gave of themselves on September 11, I would not

believe you and I do not think the American people would believe

you and I do not think the American people would believe you. Yet,

we have individuals who are now so sick from their work at

Ground Zero that they cannot work, have lost their health care and

the Federal Government’s response so far has been to turn a cold

shoulder.

Quite simply, they deserve to be treated better. We give our veterans health care if they get wounded in battle. Why should our

first responders and relief workers be treated differently? We lost

more people on September 11 than we did on Pearl Harbor. This

is the precise reason why Chairman Shays and I have introduced

H.R. 4059, the ‘‘Remember 9/11 Health Act.’’ This legislation is

modeled after a program that gives free Federal health insurance

to volunteer forest firefighters who get injured while fighting a forest fire, provides Federal health insurance to individuals who are

sick as a direct result of the September 11 disaster. The Senate has

passed a bill offered by Senators Voinovich and Clinton which sets

up a similar program for all major disasters but the House has yet

to act on it.

Immediately following the terrorist attacks, the most heart

warming thing that happened was how all of America came together and tens of thousands of people came to lower Manhattan

to help. I truly believe the most inspiring scene I have ever seen

in my life was the bucket brigade of volunteers who went in and

worked with the police and fire. Many of them have no health coverage, there is no way to help them now. We know the deep sacrifices of the police, the firefighters, the Port Authority made in

terms of first responders who lost their lives.

The story is not told as often of the thousands who have suffered

from health problems. We always talk about the people who lost

their lives, we need to start talking now about the people who are

suffering from health problems. We are not, in my opinion, living

up to our end of the bargain. We are not caring for the health of

our heroes and heroines of September 11. Unless we take the opportunity now to care for them, we jeopardize the future response

to disasters. We cannot afford having first responders and volunteers second guess their actions as they respond to a disaster when

they rush in to help others. They should at the very least know

that the Government will be there to help them with health care

coverage.

Again, I thank the chairman for his oversight and for his persist

work to help the victims of September 11.

[The prepared statement of Hon. Carolyn B. Maloney follows:]

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Mr. SHAYS. I thank the gentlelady. Let me say, your statement

was outstanding. It was longer than we usually have in an opening

statement, but frankly, she was using Mr. Tierney’s time as well.

I thank the gentleman for yielding because it was an outstanding

statement.

The only reason I am making that preface is that I am going to

be asking the witnesses to stay closer to 5 minutes since we are

starting later in the day. At this time, I would ask if Mr. Turner

has any comment or if I should recognize the witnesses?

Mr. TURNER. No.

Mr. SHAYS. Let me ask unanimous consent that all members of

the subcommittee be permitted to place an opening statement in

the record and that the record remain open for 3 days for that purpose. Without objection, so ordered.

I ask further unanimous consent that all witnesses be permitted

to include their written statement in the record and without objection, so ordered.

I think the key point I heard in Mrs. Maloney’s statement is how

do you get the disparate pieces to fit together? How do we do that?

I hope that is answered.

I would note our first panel consists of: Dr. John Howard, Director, National Institute for Occupational Safety and Health, HHS,

accompanied by Dr. G. David Williamson, Director, Agency for

Toxic Substances and Disease Registry, HHS; Dr. Janet Heinrich,

Director, Health Care-Public Health Issues, GAO; and Robert E.

Robertson, Director, Education, Workforce and Income Security,

GAO.

Dr. Howard, you have the floor.

STATEMENTS OF JOHN HOWARD, DIRECTOR, NATIONAL INSTITUTE FOR OCCUPATIONAL SAFETY AND HEALTH, HHS, ACCOMPANIED BY DR. G. DAVID WILLIAMSON, DIRECTOR,

AGENCY FOR TOXIC SUBSTANCES AND DISEASE REGISTRY,

HHS; DR. JANET HEINRICH, DIRECTOR, HEALTH CARE-PUBLIC HEALTH ISSUES, GAO; AND ROBERT E. ROBERTSON, DIRECTOR, EDUCATION, WORKFORCE AND INCOME SECURITY,

GAO

Dr. HOWARD. My name is John Howard and I am the Director

of the National Institute for Occupational Safety and Health which

is part of the Centers for Disease Control and Prevention in the

Department of Health and Human Services. I am pleased to appear

before you today on behalf of CDC and am joined by David

Williamson of the Agency for Toxic Substances and Disease Registry.

Mr. SHAYS. Before you proceed, I would note for the record we

have Jerry Nadler from Manhattan. I would like to go on with the

testimony but without objection, the gentleman is allowed to participate fully as any other member here. If you would like to limit

your comment to a minute or so, I would be happy to have your

statement. We started literally 25 minutes ago and we haven’t

heard from the witnesses.

Mr. NADLER. I think it is about 2 minutes.

Mr. SHAYS. Mr. Nadler is in the area affected and I welcome his

statement.

19

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 canVerDate 11-MAY-2000 12:10 Mar 28, 2005 Jkt 000000 PO 00000 Frm 00023 Fmt 6633 Sfmt 6633 D:\DOCS\98999.TXT HGOVREF1 PsN: HGOVREF1
20

not separate the health effects of September 11 from EPA’s response at the site.

I believe it is very clear what the Federal Government should do

to protect the health of all those exposed to hazardous substances

as a result of September 11. The EPA should follow its federally

mandated procedures to characterize the site and the Federal Government should cover the actual medical treatment of those in

need. We must do more than just a screening program. The victims

of the terrorist attack are not just statistics.

The GAO report under consideration today provides more disturbing evidence to the extent that the health impact following

September 11 and the gaps in medical treatment for those affected.

According to the report, 90 percent of the firefighters and EMS

workers at the site had respiratory ailments. Of the 332 firefighters in the study that reported ‘‘World Trade Center Cough’’

only about half have shown any improvement.

The GAO report also found that the people living and working

in lower Manhattan experienced health effects similar to first responders and that almost 75 percent of respondents living near the

site experience respiratory symptoms. The only assistance for these

residents is the health registry which does not provide any actual

medical treatment.

It troubles me that it has been almost 3 years since the attacks

and we have made so little progress in helping people recover physically and mentally from the attacks. I am pleased this committee

is continuing to look into the health effects of September 11 and

I look forward to hearing from the witnesses and learning more

about this GAO report so we can move ahead and try to make

progress on this issue.

The first responders, workers, residents and all those affected by

the attacks deserve more from the Federal Government. I stand

ready to work with my colleagues in that regard and I again express my appreciation to the chairman, Mr. Shays, and the ranking

member, Mrs. Maloney, for following up with this hearing.

Mr. SHAYS. I thank the gentleman and appreciate his statement.

Dr. Howard, you are going to start over again.

[Witnesses sworn.]

Dr. HOWARD. My testimony this afternoon is going to focus on

the most recent CDC efforts to respond to the needs of workers and

volunteers regarding the potential health effects of their exposures

at the World Trade Center site.

Regarding baseline medical screening, in 2002, CDC’s National

Center for Environmental Health granted $4.8 million to the New

York City Fire Department and $2.4 million to the New York State

Department of Health to conduct baseline medical evaluations of

firefighters and New York State employees who responded to the

World Trade Center site in the course of their own jobs.

To assess the health status of the emergency services and rescue

and recovery personnel who were not otherwise covered by the New

York City Fire Department or the New York State Health Department, baseline medical screening programs, CDC awarded $11.8

million to the Mount Sinai School of Medicine, Center for Occupational and Environmental Medicine to establish the World Trade

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Center Worker and Volunteer Medical Screening Program. In 2003,

CDC supplemented this program with an additional $4 million.

Mount Sinai established the program by organizing a consortium

of occupational health clinics both in New York City and across the

Nation to provide medical screening services to workers and volunteers. Baseline screening began in July 2002 and as of August 4,

2004, 11,793 workers and volunteers have been screened.

NIOSH scientists, in collaboration with Mount Sinai, analyzed

data from a subset of participants, about 10 percent of the sample

seen at Mount Sinai between July 2002 and December 2002. These

findings will be published this Friday, September 10, in two articles in the CDC Morbidity and Mortality Weekly Report and will

describe the physical and mental health effects seen in World

Trade Center rescue and recovery workers and volunteers.

With regard to long-term medical monitoring, in 2003, Congress

directed and provided $90 million for FEMA to work with NIOSH

to support long-term followup medical monitoring for World Trade

Center rescue and recovery workers and volunteers, including current and retired New York City firefighters. In anticipation of receipt of these funds, NIOSH held a public meeting in New York in

May 2003 to gather input regarding the content and the structure

of this long-term medical monitoring program. On March 18, 2004,

CDC awarded eight grants for a total of approximately $81 million

to provide New York City firefighters and other rescue and recovery workers and volunteers with medical monitoring examinations

at six clinical centers throughout New York City and over the next

5 years.

Importantly, the New York City Fire Department and the Mount

Sinai School of Medicine provided funding to establish coordinating

data centers to facilitate coordination and communication among

the clinical centers and to assure quality control. Followup medical

examinations will begin in October 2004 after appropriate hospital

review committees have approved the clinical protocols.

CDC and ATSDR are also working to identify the health effects

of September 11 on the people living, working or attending school

in the vicinity of the World Trade Center site. In collaboration with

the New York City Department of Health and Mental Hygiene,

ATSDR has established a registry to identify and track the longterm 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.

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The New York City Department of Health and Mental Hygiene

and ATSDR will communicate information to registrants and

health care providers as well as posting information updates quarterly on the World Trade Center Health Registry Web site at

www.wtcregistry.org. The upcoming October quarterly update will

present for the first time health outcome data collected and analyzed via the registry.

In summary, CDC and ATSDR are committed to assessing the

health effects resulting from September 11, 2001 World Trade Center disaster and to identifying the physical and mental health

needs of affected workers, residents and community members.

I thank you for your attention. I am pleased to answer any questions you may have.

[The prepared statement of Dr. Howard follows:]

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Mr. SHAYS. Thank you very much, Dr. Howard.

Dr. Heinrich.

Dr. HEINRICH. I too appreciate the opportunity to be here today

as you discuss the health effects of the September 11 terrorist attack on the World Trade Center.

Although people across the country were exposed to the emotional trauma of the attack, the residents and workers in the area

around the World Trade Center as well as responders, not only experienced the event but also were exposed to a complex mixture of

potentially toxic contaminants in the air and on the ground.

As noted before, almost 3,000 people were killed in the attack,

although a majority of the estimated 16,000–18,000 people who

were in the complex that morning were able to evacuate with

minor or no injuries. An estimated 40,000 responders were at or in

the vicinity of the World Trade Center site or the Staten Island

Fresh Kills landfill.

Concerns have been raised about the short and long term physical and mental health effects. Under challenging circumstances,

various government agencies and private sector organizations established several efforts to understand and monitor the health effects resulting from the attack. I will describe the variety of physical and mental health effects that have been reported across a

wide range of people in the aftermath of this attack.

Even though most people did not require hospitalization immediately after the attack, thousands of people were treated for injuries including inhalation, musculoskeletal burns and eye injuries.

In addition, thousands of responders were treated for injuries during the 10 month clean-up period. Despite the disaster site being

considered extremely dangerous, and the more than 3.7 million

work hours logged over this period, very few injuries resulted in

lost work days. There was a concerted effort by everyone to work

safely as well as a reluctance to leave the site.

A range of respiratory health effects including a new syndrome

called World Trade Center cough and chronic diseases such as

asthma were observed among people exposed to the dust and debris

of the World Trade Center collapse. Studies present a consistent

picture in findings regarding the conditions among those people involved in rescue, recovery and cleanup as well as those who lived

and worked in the vicinity. Commonly reported conditions include

wheezing, shortness of breath, sinusitis and gastroesophogeal

reflux disease.

Almost all of the New York City Fire Department firefighters

who responded to the attack developed respiratory problems and

for some this has meant their careers ended as firefighters. While

some responders have reported that symptoms resolved after a few

months, many reported pulmonary symptoms 9 months or more

after the attack.

In the weeks and months that followed, many people reported

symptoms associated with post-traumatic stress disorder or PTSD

with people living or working near the site reporting a higher rate.

People near the site also reported more symptoms associated with

depression, stress and anxiety.

The six programs established to monitor and understand these

health effects vary in terms of which people are eligible to particiVerDate 11-MAY-2000 12:10 Mar 28, 2005 Jkt 000000 PO 00000 Frm 00039 Fmt 6633 Sfmt 6633 D:\DOCS\98999.TXT HGOVREF1 PsN: HGOVREF1
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pate, methods for collecting information about the health effects,

options for treatment referral and the number of years people will

be monitored. These programs are not centrally coordinated but

some are now collaborating with each other. Although five of the

programs target responder populations, the largest, the World

Trade Center Health Registry, is open to people living and working

in the vicinity as well as responders.

The monitoring programs vary in their methods for identifying

those who may require treatment and although none are funded to

provide treatment, they provide options for referrals. For example,

the New York City Fire Department Program offers a comprehensive medical evaluation and mental health screening. People needing treatment may obtain care from the fire department’s Bureau

of Health Services.

The Mount Sinai Program also provides a comprehensive physical and mental health evaluation. If a person requires followup

medical or mental health services and is unable to pay for these,

they may be referred to the Mount Sinai Health for Heroes Program which is supported through donations, or to other safety net

programs.

The Federal Occupational Health and New York State programs

also include medical evaluations as well as self-administered health

and exposure questionnaires. Workers who require followup are referred to their primary care physicians.

Unlike the other monitoring programs, the World Trade Center

Health Registry and the Hopkins registry obtain information obtained by questionnaire and does not include a medical evaluation

and neither effort is affiliated with treatment. Health effects have

been reported but the full impact is unknown.

The potential for additional long term effects remains, yet the

monitoring programs may not be in operation long enough to capture information about new conditions and are not set up necessarily to coordinate data and findings.

We continue to hear the concerns about the lack of resources for

adequate treatment of chronic conditions. People really must rely

on the existing patchwork of services.

Mr. Chairman, I am happy to answer any questions you may

have.

[The prepared statement of Dr. Heinrich follows:]

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Mr. SHAYS. Thank you very much.

Mr. Robertson.

Mr. ROBERTSON. Good afternoon and thanks for the opportunity

to be here.

I am going to switch gears a bit and talk about the Federal assistance provided to the State of New York to help the State deal

with the workers compensation claims as a result of the terrorist

attack.

Mr. SHAYS. Basically, we were talking about health effects and

now we want to talk about compensation. There are really two

streams of financing we are talking about. One is a stream of

money for health needs and another to compensate for lost work.

Mr. ROBERTSON. Absolutely.

As you are aware, in the aftermath of the September 11 tragedy,

the New York State Workers Compensation Board faced an unprecedented challenge in dealing with claims from workers or volunteers who were injured, became ill or died as a result of the terrorist attacks or the recovery efforts that followed.

To help the Board meet this challenge, Congress appropriated

Federal funds totaling $175 million. These funds were provided

through the U.S. Department of Labor for the board in three earmarked portions, $125 million was to be used for processing claims;

$25 million was to be used to pay benefits to workers associated

with uninsured employers; and last, $25 million was to be used to

pay benefits to volunteers. I am going to divide my comments into

two general areas.

First, I will talk briefly about how much of the Federal funds

have been used and what they have been used for and then, I am

going to talk about the status of the applications for compensation

that the New York Board has received to give you some perspective

on the number of claims the State is dealing with and what actions

have been taken on them.

Starting with the use of claims, we found as of June 30, 2004,

the New York State Workers Compensation Board had used about

$49 million of the total $175 million appropriated for September 11

workers compensation expenses. If you look at how the funds within each of the three individual earmarked portions of Federal assistance were used, this is what you would find. From the $125

million portion available for processing claims, the Board used

about $44 million to reimburse two State entities for benefits they

had paid to September 11 victims or their survivors, those entities

being the New York State Crime Victims Board and the New York

State Insurance Fund.

In addition to these reimbursements, the Board used about $4.4

million of the $125 million to prepare for any future attacks. As an

aside, I should note that we are continuing to gather information

on whether or not the Board’s use of funds in this particular earmarked category of Federal assistance is consistent with the Appropriation Act and the grant agreement covering the use of the funds.

Concerning the $25 million earmarked for paying benefits for

workers associated with uninsured employers, we found the Board

had not used any of these funds. However, the Board had used

funds from its Uninsured Employer Fund to pay benefits for September 11 workers who worked for uninsured employers. It plans

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to try to recoup these funds from uninsured employers before drawing upon Federal funds. Finally, the Board has used about $456,000 of the $25 million

earmarked for paying benefits to volunteers or their survivors.

I would like to move now to the status of September 11 claims.

In that respect, the Board has indicated that as of mid-2004, it had

received 10,182 claims for workers compensation and an additional

588 claims for volunteers that were related to the September 11 attacks. Ninety percent of the workers compensation claims had been

resolved, meaning the Board had resolved all the issues that it

could with the information available at the time.

Representative Maloney I am afraid I am not going to be able to

go too much further than that in defining resolved.

Mr. TIERNEY. May I interrupt you for a second. Did you say 90

or 9?

Mr. ROBERTSON. Ninety.

The remaining 10 percent of claims were pending in that the

Board was waiting for additional information, hearings were yet to

be held or the claimants had not pursued their case after they filed

initially.

Perhaps to head off future questions, I should point out that the

Board does not track data on approval or denial rates of claims because, according to Board officials, the Board’s core mission is to

process individual claims, not their outcomes. While we can’t say

how many of the worker compensation claims were approved or denied, we can say that 42 percent of the worker compensation claims

received were being paid or were in the process of being paid.

Turning to the status of the 588 volunteer claims, we see the

Board had resolved a lower percentage of these claims in comparison with the worker compensation claims, 31 percent versus 90

percent.

The Board indicated that many of the volunteer claims were

pending because the claimants were not actively pursuing their

clams. Additionally, 85 volunteer claims were awarded cash or

medical benefits.

Mr. Chairman, that concludes my prepared remarks. I would be

happy to answer any questions at the appropriate time.

[The prepared statement of Mr. Robertson follows:]

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Mr. SHAYS. Thank you very much, all of you for your concise and

helpful testimony. We will start by turning to Mr. Tierney to ask

the first set of questions.

Mr. TIERNEY. Thank you.

Mr. Robertson, I want to pick up where you left off. You used the

word resolved the claims, so can we explore that a bit and have you

define that for us what exactly you mean by ‘‘resolved claim?’’

Mr. ROBERTSON. I don’t think you will like the explanation because, as I said earlier, I have given you all I have in terms of the

definition which is basically the Board’s definition. That is they

have in essence acted on any piece of information they had and

made any decision they could based on the information they had

at that point in time. According to the Board, claims can go back

and forth between resolved and pending depending on the information that is brought to bear.

Mr. TIERNEY. So they might not get resolved if they think a person has abandoned or neglected their claim?

Mr. ROBERTSON. That would go in the pending category.

Mr. TIERNEY. What items go into the resolved category, what is

the range of decisions that end up being called resolved?

Mr. ROBERTSON. It would probably be easier to define pending

and then anything else.

Mr. SHAYS. Mr. Tierney is going to have more than 5 minutes because we do need to understand this issue and you do not need to

keep saying you don’t think we are going to like the answer. You

don’t need to presume that. What you are doing is reporting on not

what you are doing but on what someone else is doing. If you could

help Mr. Tierney understand this point by point and the whole subcommittee, it would be helpful.

Mr. TIERNEY. We are not holding you responsible.

Mr. ROBERTSON. Let me say a couple things. Again, I think it is

probably easiest to define pending and basically say anything else

that is not defined as pending would be in the resolved category.

Mr. TIERNEY. That is only slightly helpful because it doesn’t tell

me at all any characteristics of the other things. If it is pending,

it hasn’t been acted upon, it is in resolved but it doesn’t necessarily

mean it has been acted upon favorably or any other way.

Mr. ROBERTSON. Absolutely, and as I said, the cases can go between pending and resolved based on the information.

Mr. TIERNEY. And they have no other breakdown of this at all?

Mr. ROBERTSON. No. It was very difficult for us to give a perspective on how the September 11 claims were treated because we

didn’t have information on typically what is the rate of approval

and the rate of denial for the claims the Board normally processes

and how the September 11 claims compare to that. We didn’t have

that data so that was one of the reasons it was very difficult for

us to provide perspective on what those status numbers mean.

I would like to point out another factor that also limits or inhibits our ability to provide the perspective I think everyone wants in

terms of the September 11 claims in comparison with the other

compensation worker claims. The fact of the matter is that even if

we had information on rates of denial and rates of approval, it

could be that the very basic characteristics of the September 11

claims were so different from the typical worker compensation

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claim that you would have to be careful in making that comparison.

This is a very long way of saying we have been frustrated in trying to provide perspectives on what was happening with these September 11 cases and the status of the cases.

Mr. TIERNEY. Any other ideas on how we are going to try to recapture some of that ground?

Mr. ROBERTSON. We are getting data and we do present some of

the data in the prepared statement on specific types of claims—the

volunteer claims—because those use specific Federal funds and the

Board is following those in terms of providing information on how

many have been awarded and how many weren’t. In that respect

we are getting more information.

Mr. TIERNEY. Dr. Heinrich, with respect to those workers who

were injured and have not been able to return to their former employment, what did you say in your statement about what is being

done for those individuals? Is anything being done and how are we

doing?

Dr. HEINRICH. First of all, we don’t have good numbers on all the

people who were injured. I think the best of our information is for

people who had musculeskeletal injuries or sprains. They were resolved fairly soon after the attack. The major issues really seem to

surround people who have developed chronic conditions as opposed

to injuries.

Mr. TIERNEY. Many of those people have not been able to return

to work. I am interested in knowing what we are doing for that

population of people.

Dr. HOWARD. The only thing I would say is I think we probably

need to hear from the Mount Sinai people who are actually seeing

these thousands of workers and former workers to give some reference point for that. I don’t have any information from the CDC

perspective. I would imagine if they are covered by workers compensation, there are rehabilitation provisions in the State Workers

Compensation Act.

Mr. TIERNEY. They would be back in the resolved category?

Mr. ROBERTSON. Yes.

Mr. TIERNEY. Thank you, Mr. Chairman. Thank you for your

courtesy.

Mr. SHAYS. At this time, we will turn to Mr. Turner.

Mr. TURNER. I want to thank you again for your efforts to focus

on this issue. This is a very important issue as we all know not

only for the heroes of September 11 but also for the victims of September 11 which through this process will be identified.

One of the issues that was clear when we had our hearing in October on this issue was the issue of misconceptions of how the

agencies relate to one another and responsibilities as to how agencies relate to one another. I would like to ask that the hearing

transcript of October 2003, pages 164 and 165 be admitted to this

record.

Mr. SHAYS. Without objection.

[The information referred to follows:]

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Mr. TURNER. It goes to refute the misconception that Federal

EPA was mandated to undertake decontamination at or surrounding the World Trade Center. There is pretty exhaustive response

in there by the EPA as to what their authorization responsibility

is and their mandated responsibilities.

Getting to the issue of the different agencies and how they interact, one thing that was clear in that hearing in October is there

appeared to be a lack of coordination both in registries and information being gathered in the processing of claims and assistance

being provided.

I am hopeful that has improved since October and I would like

your thoughts as to how the various interests and parties are working together to ensure we get a clear understanding of what resources will be needed, what resources are being applied, what information and data is being collected and how it is being handled

and meshed together so we can have a clear picture of what needs

to be done. Dr. Howard.

Dr. HOWARD. I do have a few thoughts on this issue. The short

answer is I think we are better coordinated than we were but I

think the long answer has to start with September 12, 2001, when

response had to be immediate and oftentimes after a disaster, without existing programs in place, you make the best opportunities

work for you.

I think that coordination wasn’t the first item in the agenda in

late 2001 and 2002. I think that is true in most disasters and I

think I would like to make a relationship between that early response that was rapid and some of the money that came out of

CDC very early went to States and grant systems that were already in place. That is how the New York Department of Health

got money.

As 2002 and 2003 went on, the need for increased coordination

was clear. When NIOSH received the $90 million from FEMA to do

long term monitoring, one of the things we insisted on was coordination amongst the various medical monitoring programs, the Fire

Department and Mount Sinai. We set aside money within that $90

million for coordination between those two entities and between the

Government agencies.

I think we have grown in our understanding of coordination.

From our department’s viewpoint, the Department of Health and

Human Services, our Office of the Secretary, the Office of Public

Health Preparedness is the coordinator for our program, but we are

not centralized in the traditional sense. All the programs are not

one program because they attempt to deal with different populations situated in different ways and that have different needs.

I think the take home point I would like to make with regard to

the coordination and centralization issue is that the biggest lesson

I think we have learned from the establishment of these programs

has been that emergency preparedness needs to include right now

and in the future an aspect of medical preparedness also, not only

the immediate need of taking care of people who are acutely injured and have acute illnesses, but also people who will develop

chronic health effects.

I think that the Mount Sinai and other programs CDC has and

HHS have funded have taught a very valuable lesson about the

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value of including medical preparedness for chronic conditions that

will develop from disaster responses. I would say my thoughts are

that coordination has developed over time, we are much better coordinated now, 3 years later, than we were on September 12, 2001.

Dr. HEINRICH. I would like to add that there are institutions and

organizations in place now as a result of our experience with September 11 that weren’t there before. The States and certainly the

city of New York have received money so that they are better prepared for major public health emergencies and bioterrorism. You

have at HHS now the Office of Public Health Emergency Preparedness so that they really do have a mandated coordination role along

with the Department of Homeland Security.

That is not to say that everything is rosy but at least you have

people that are accountable for that coordination effort. Certainly

in New York City we have seen that they practiced on a number

of occasions coordination because of a public health emergency

event, the anthrax incidents, for example.

Mr. ROBERTSON. My perspective is obviously a lot more narrow

than my two colleagues. One of the points I wanted to make today

in regard to the Federal assistance and how well it was used or

well it wasn’t used, is it seems to me now would be a terrific time,

just talking about the narrow issue of Federal assistance, a terrific

time for all of the players at the State and Federal level to get together and basically identify what worked and what didn’t work.

This lessons learned type of evaluation, I think, is particularly

important now in the world we live in because there is no guarantee that we are not going to experience another tragedy. I would

encourage kind of a lessons learned analysis of how we use the

Federal assistance for the worker compensation funds.

Mr. SHAYS. I think there is almost a guarantee that there will

be future events. Some we will be able to detect and prevent and

some we probably won’t be able to, maybe not as horrific, God help

us, but I go under the assumption that one of the reasons we are

having this hearing is to make sure that we learn from the New

York experience, in addition to helping our fellow countrymen.

At this time, the Chair would recognize Mrs. Maloney for 10 minutes.

Mrs. MALONEY. I thank all the panelists. I would like to say that

your report, Dr. Heinrich, is probably the most thorough evaluation

I have seen so far on the Federal response to September 11 health

effects. Reading your testimony, it looks to me like 3 years after

September 11, we still have no idea of the number of people who

are ill or injured from the attacks. We still don’t have that.

From reading your report, it looks to me that no one from the

Federal Government or anywhere can give us a number as to how

many people are ill because of September 11. It appears that no

one is in charge. Is this a fair assessment?

Dr. HEINRICH. The no one in charge, I would agree with although

as we have heard, there are new efforts to try to coordinate the

programs that are doing the monitoring. I suppose we could say because most of these programs that are doing the monitoring come

from CDC that one might expect that CDC would take a role in

being accountable for all those programs. The fact of the matter is,

you are correct. We don’t know the exact number of people injured

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as a result of September 11 or the number of people who now have

chronic conditions.

Mrs. MALONEY. Dr. Howard, can you tell me who in the Federal

Government is in charge of coordinating the health effects of September 11?

Dr. HOWARD. As I said, I can only speak for the Department of

Health and Human Services. Certainly as Dr. Heinrich has said,

our Office of the Secretary, the Office of Public Health Preparedness specifically, is our coordinator for all of our programs.

As our Secretary is fond of saying, we are one department. So all

of the programs that emanate from the Department of Health and

Human Services are coordinated. As I said also, that doesn’t mean

that each program looks like the other program. There are at least

five programs that I know of funded by the Department to provide

medical monitoring as well as the registry that ATSDR and the

New York City Health Department administer. So it doesn’t mean

they are all centralized but they are coordinated.

I would also like to point out that there are coordinations that

are occurring at the level that I think are also important, in addition to the Federal bureaucratic level. That is at the level of the

users of the service, the registrants in the registry, the labor representatives of the workers, and the medical providers in the community. I think there is a lattice work of coordination going on

there that I would say did not exist a couple of years ago but has

developed over the last couple years.

Mrs. MALONEY. You are saying that the person in charge is

Tommy Thompson of Health and Human Services?

Dr. HOWARD. As our Secretary would say and as my director

would say, Dr. Gerberding, the buck stops with all of us in terms

of the managers of all of our programs.

Mrs. MALONEY. One person has to be in charge.

Dr. HOWARD. As I said, the Office of the Secretary and the Office

of Public Health Preparedness is the responsible entity within

HHS.

Mrs. MALONEY. Can you give me the name of who is in charge?

Dr. HOWARD. The office is run by the Assistant Secretary, Stewart Simonson.

Mrs. MALONEY. Does he know or anyone in NIOSH or the Federal Government how many people are still suffering or still sick

as a direct result of September 11?

Dr. HOWARD. I am not sure that anybody could give you an exact

figure. The denominator of people exposed is very rough with a

large margin of error.

Mrs. MALONEY. We have six different areas doing various monitoring and oversight according to Dr. Heinrich’s report from the

GAO. Someone should be pulling all of this together. At the very

least we should know how many people are sick as documented in

these six different programs.

Dr. HOWARD. I don’t think it is hard to come up with an estimate

based on the large margin error with the denominator of people exposed and the number of people that have entered the registry. We

will be able to get an idea from the registry of a prevalence number

of people exposed. My colleague who runs the registry may be able

to respond a little to that.

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Mrs. MALONEY. Yet we know in the registry, only 55,000 people

have gone into the registry, so that is not in a sense an accurate

number. Dr. Howard, since you said your agency is in charge. I

want to get a number of how many people are sick and when are

you going to get me that information? I think that is a legitimate

question and something that should have been part of the GAO report but because we were not coordinated, they were not able to

come up with the number.

I think 3 years after September 11, we should have a better assessment of people’s health conditions that we can talk about. Because I represent New York, a firefighter just came to my office 3

weeks ago and when he went into a fire, he thought he was totally

well and he lost his ability to speak. The doctors at the New York

Fire Department are saying it is related to September 11. He can

no longer operate as a firefighter. It is an illness that came out 3

years later that he didn’t have at first. We have to have that some

place and you say your unit is going to have that and coordinate

it.

I want to know how many people are still sick based on the six

registries we have going and when can he get us that information.

I think that is a legitimate request.

Dr. HOWARD. I think we will have on September 10 the first peer

reviewed report in CDC’s MMWR which will have a subset, about

10 percent, of the participants that have been screened at Mount

Sinai. We will have a prevalence figure, an incidence figure, of respiratory symptoms, muscle skeletal symptoms and others.

Mrs. MALONEY. Dr. Howard, that is just one. I am glad you will

have that on September 10. I congratulate you and everyone who

has worked on it but that is just one of the six different areas that

GAO outlined that are pulling together this information. I am delighted we will have Mount Sinai’s report on September 10.

What about the other five programs? When are we going to have

their report combined together in one getting back to my initial

question, who is in charge? Someone should be in charge of having

this information in the Government and if that is the only thing

that comes out of this hearing, I would be very happy to know

there is one central point that Members of Congress can go to and

the public and health experts to get this information.

Dr. WILLIAMSON. That is a very good question. I can respond

with regards to the registry. One of the reasons the registry was

established was because when you have these other five programs,

there is one registry and five other programs, sets of health studies. Those sets of health studies are looking at very specific subpopulations of people who were exposed during and immediately

after, a few months after the disaster.

We were hoping with the registry to be able to capture a cross

section of everyone who was exposed not necessarily just subpopulations. We think the registry is going to give us the best idea

of how many people actually were injured and/or ill resulting from

the collapse of the World Trade Center Towers.

We are not going to have an exact number because we only have

so many people who have registered and will be included in the

registry but that is a much broader and more comprehensive snapshot than any of the other five sets of programs you are talking

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about because it includes all of the people who were potentially and

were exposed during and immediately after the collapse of the

World Trade Center Towers.

Mrs. MALONEY. But it is just one of the six different programs

and when you look at the other five programs, they have more people than the 55,000 in the registry. For whatever reason, the registry is not capturing the people. I think we have a challenge here

and I think it is an important challenge. I think many health experts have talked about the unique disaster of pulverized glass, cement, toxins, antitoxins, all these chemicals.

What is that going to mean in terms of long term health effects

for cancer and so forth and how can we be assured that the monitoring will continue for 20 years and maybe longer to really track

this?

Dr. WILLIAMSON. I am not sure we can assure that we would be

able to track it for over 20 years. On an annual basis, we are looking for being able to continue the registry as the registry was established a couple of years ago and hopefully we will receive additional funding in the fiscal year 2005 budget to increase our registry efforts but we can’t explain whether or not we are going to

be able to have the registry for more than 20 years.

We would like to be able to track as best we can not only the

short term but the long term effects of the disaster. For as long as

we continue collecting the data, analyzing it and find things in the

data that indicate that we need to study more subpopulations, we

are hoping to continue the registry.

Dr. HOWARD. That study over 5 years will provide very powerful

indicators of the future need for funding.

Mr. SHAYS. Before recognizing Mr. Nadler, I want to make a

point that haunts me a bit. I had some doctors who treat cancer

patients, this was 10 years ago, and they came because they wanted me to get me to focus more on smoking. They said that 20 years

after World War I, cancer rates went up almost perpendicular. The

identical period of time, they leveled off and they just soared. That

is unsettling because for a number of years, people thought they

were safe and yet they weren’t. That is why the monitoring issue

is something I want to focus on long term.

At this time, the Chair would recognize Mr. Nadler for 10 minutes.

Mr. NADLER. Let me state for the record, regarding a comment

made by the gentleman from Ohio a few minutes ago, at the last

hearing when EPA was asked they stated they were not responsible, it would not be lead agency for cleaning up the area of having

no responsibility for decontaminating buildings. EPA did say that

in answer to a question of Mr. Turner’s.

I then asked them in light of Presidential Defense Directive 62

issued in 1998 which specifically makes EPA the lead agency for

dealing with the consequences of hazardous material discharges as

a result of an enemy attack or any kind such as that, did they

stand by their testimony given under oath?

They then said they were not lawyers and couldn’t say yes or no

to that question and would get back to us, which they have not

done as of yet. I can’t let that stand. The EPA ducked that question

and clearly in my opinion under PDD 62 and the CERCLA law, is

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responsible, is the lead agency and is still denying that responsibility.

That bodes ill for the future because no one is taking the lead

responsibility at this point in the Federal Government for indoor

cleanup or decontamination in case of a future attack or catastrophe. No one has taken it in New York at all. The city hasn’t

taken it, the State hasn’t taken it, the Federal Government hasn’t

taken it. It has left residents to their own devices which is why I

believe residents are slowly being poisoned today by toxic environments and improperly and inadequately cleaned up homes, schools,

fire houses and offices to this day and for the next 20 years.

Mr. SHAYS. Could the gentleman yield for a second? We will go

back and look at any part of the testimony and commitments made

to respond because the agencies have not gotten back to us on certain issues and I need to make sure they have done it on all.

Mr. NADLER. It’s in the transcript a few pages after page 164.

Mr. SHAYS. We will do that and I want to make sure we don’t

have it and have not been aware we have it. We will make sure

that is followed up.

Mr. NADLER. Dr. Howard, following up Mrs. Maloney’s question

on how many people were affected, we have five programs basically

for firefighters, police officers and different categories of first responders and then for residents and workers in the area, you have

the registry. The registry, however, was limited by fiat to people

who lived and worked south of Canal Street. What justification is

there in terms of scientific validity of any information we get out

of the registry for an arbitrary line at Canal Street?

Dr. HOWARD. I will let Dr. Williamson handle that one.

Dr. WILLIAMSON. The New York City Department of Health and

Mental Hygiene as well as ATSDR put together a scientific advisory committee of a group of illustrious scientists from Columbia

and Mount Sinai and Johns Hopkins as well as other institutions.

Those people in conjunction with ATSDR and New York City Department of Health and Mental Hygiene decided.

Mr. NADLER. I don’t care who decided, what was that based on

other than arbitrary ruling? Was there a Star Trek type force field

or a 3,000 foot high wall at Canal Street that prevented the toxins

from going north of Canal Street or for that matter across the East

River into Brooklyn? Do we have any scientific basis for believing

that a registry with that geographic boundary has any validity at

all?

Dr. WILLIAMSON. The CDC, ATSDR and New York City, along

with the Scientific Advisory Committee took a look at the information provided by different groups including EPA, NASA and

ATSDR.

Mr. NADLER. What is that information? I don’t care who said it.

I want to know what basis do we have for assuming that the south

side of Canal Street might have been polluted but the north side

of Canal Street was crystal pure and clear?

Dr. WILLIAMSON. The registry was set up not to say that some

groups were exposed and others were not. It was set up to say

what groups were most exposed.

Mr. NADLER. What basis do we have to assume that Canal Street

had any scientific validity whatsoever? I am not interested in who

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said it did. What basis do we have that there was something magic

about Canal Street that said people who lived and worked south

of it were at an appreciably larger risk and had to be looked at

than people who lived across the street or a block north of it?

I know the answer to this question I am going to ask is no but

I would like you to answer it. Did anybody do any scientific assessment of where the toxins went? Did anybody do sampling to say

they went here and therefore this is where we will do the registry

and not there?

Dr. WILLIAMSON. There were different outdoor and indoor air

samples available and that information was taken into consideration.

Mr. NADLER. Did anybody do what the Inspector General of the

EPA said should have been done which is to say, taking samples

in a concentric circle going outward from the World Trade Center

so you could say the problem is three blocks in this direction and

3 miles in that direction or two blocks? Do we have any scientific

basis for assuming that the geographic limitation of the registry

has any scientific validity at all, yes or no.

Dr. WILLIAMSON. I am not aware of that kind of detailed analysis.

Mr. NADLER. Are you aware of any scientific analysis other than

an arbitrary, bureaucratic line?

Dr. WILLIAMSON. Only if taking into consideration the data we

had at hand from the different agencies.

Mr. NADLER. The data that was in-hand was incomplete and

showed lots of pollution north of Canal Street, in Brooklyn and all

over the place. What was the basis for drawing a line for this registry at Canal Street or for that matter, the East River?

Dr. WILLIAMSON. I am not aware of specifically how the lines

were drawn.

Mr. NADLER. Can you get back to us the information as to the

scientific basis for choosing Canal Street, assuming there is a difference between north of Canal Street and south of Canal Street

and that there is a difference between lower Manhattan and say

Brooklyn Heights because all the satellite photos showed that

plume going all across Brooklyn.

We know that ash was sprawling across Brooklyn into Borough

Park and Brooklyn Heights and Coney Island and yet nobody in

those neighborhoods or north of Canal Street is allowed to be in

this registry which I maintain means the registry is incomplete.

Chinatown was also cutoff. What was the basis? We know there

was lots of pollution there.

What was the basis for saying nothing north of Canal, nothing

in Chinatown, nothing across the East River? I am not interested

in what bureaucratic agency said that’s a good idea, I want to know

what is the scientific basis for drawing such a line?

Dr. WILLIAMSON. Again, the point was not to exclude anyone. We

have to collect as much information in as comprehensive a way as

we can.

Mr. NADLER. With all due respect, that is rhetoric. Why was it

drawn at Canal Street and not at say Chambers Street or in a 5

mile radius or a 2 mile radius around the World Trade Center?

What basis was there for drawing the line that was drawn? What

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was the scientific basis for drawing that line? I don’t believe there

was any.

I’d like to hear what the scientific basis for drawing that line is

because if there wasn’t a scientific basis, which I believe to be the

case, then the registry is not including as many people as possible,

it may be excluding 80 percent for all we know of the people who

ought to be in it.

Dr. WILLIAMSON. It is a good question and I will try to get back

to you on that but I must tell you that the registry was set up with

some very specific things in mind in order to try to get as much

information as possible given the resources and the time to reach

so that we could answer the questions you are asking with the information we have.

Mr. NADLER. It is very nice, these conclusory remarks but why

Canal Street and not Chambers Street, the scientific reason, not

Howson Street but 14th Street, why not Chinatown, why not look

into Brooklyn, not an arbitrary, bureaucratic answer but a scientific basis, what is different scientifically, what evidence do we

have that there is a scientific difference between south of Canal

and north of Canal.

Mr. SHAYS. Will the gentleman yield? I would like to resolve this

now rather than later in part because I am wondering if we did get

information that we had requested in the past.

I don’t know if I would describe your analysis as bureaucratic.

What I am hearing you basically say in the end, and I would like

to pursue this and answer it one way or the other, it seems to me

it was not based on any scientific knowledge. You made assumptions in order to begin the registry and to begin to start to get information. Are you aware that any of this was based on any scientific study that was done? I am not aware of any.

Dr. WILLIAMSON. I am not aware that it was based on any single

scientific study. It was based on information that we got from EPA,

that we got from NASA and with the constraints we had in order

to try to get the registry up and running. With estimates of the

numbers of people we thought we were going to be able to identify

with the resources we had, we said this would be a good first cut

at getting as much information on the people, we felt, not based on

a particular scientific study but all of the information.

Mr. SHAYS. Let me give the floor back to you, Mr. Nadler, and

allow you to pursue a little more but let me make this point.

I think the answer to the question is no and I don’t think we

need to wait for you to get back to us to say no. The answer is,

it is not based on any scientific information. You all tried to do the

best you could without scientific information, it strikes me. That is

what I am hearing you say. I do think, Dr. Heinrich, you could

maybe add some insight here and you have the floor, Mr. Nadler.

Mr. NADLER. Let me just say, I don’t want to take anything away

from officials who had to act in haste at the time. What bothers

me is that I do believe, and I have been involved in this in some

depth, that there is no valid reasons for those arbitrary lines and

maybe it was a good first cut, as you said, but may be those lines

should be expanded now.

In other words, if this registry is going to have validity and the

registry is also funded for 5 years. It should obviously be funded

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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 21⁄2 years ago, there ought to be detailed

samplings, indoor and outdoor and concentric circles going out from

the World Trade Center so we can see where the problem was, so

we can have a better scientific estimate of where the people should

be sampled, of where the registry should be expanded.

I will guarantee you it is a lot wider than Canal Street and what

might have been a first bureaucratic cut based on somebody’s estimate at the time but not based on valid science, which could not

be based on valid science, because no one ever did all that testing.

In all the hearings we have held and everyone has held, we know

no one ever did the testing that needed to be done. The Inspector

General said that and no one has done it since then.

It ought to be done now and the registry certainly ought to be

expanded not only in terms of time so that we can see the effects

beyond 5 years, if there are 20 year effects, which there will probably will be, but also geographically.

Mr. SHAYS. I thank the gentleman. If you want to make a comment, then I want to take the floor for my questioning.

Dr. WILLIAMSON. I would like to say again that is something that

we hope the registry will allow us to do, to identify the areas and

the subpopulations which need to continue to be looked at and to

expand depending on the information that we get. The subpopulations right now that the other five studies are not looking at quite

so much but the registry has information on, such as the residents

and the school children, that is one thing the registry is going to

allow us to do.

As far as expanding the registry boundaries, what we did was go

through a very scientifically validated protocol from peer reviewers,

so we got that approved and if we were to change the eligibility criteria or expand the eligibility criteria geographically, we would go

back through a very scientific process of putting together a peer review.

Mr. NADLER. Excuse me. With all due respect, there was no scientific process. There may have been people who decided to OK

what somebody decided but there was no valid scientific process

and if there was, we have asked you to submit that to us which

we have not yet seen.

Dr. WILLIAMSON. I am talking about justification for the protocols.

Mr. SHAYS. Dr. Heinrich, do you have any contribution to the dialog that has taken place in the last 10 minutes?

Dr. HEINRICH. I do think that in the scientific literature, we have

seen some summaries now of the sampling of the air and there is

more information now than there was when it was set up about

what kinds of contaminants were in different geographic areas. I

think what you have heard is that as they were establishing the

registry looking at the resources they had at hand, they really had

to make some assumptions about who would be the most likely to

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have the largest exposure. At least that is what I have gleaned

from the scientific reviews that we have done.

One issue I would like to bring up is that to the best of our

knowledge, the registry doesn’t necessarily have funds to carry it

forward for all 5 years since much of the funding has already been

expended.

Dr. WILLIAMSON. The registry only received initial startup funds.

Mr. NADLER. If I could just ask Dr. Heinrich, what you just said

was very interesting. You said they made a decision as to where

to focus based on the available resources most effectively which

may very well be the case but that is backward. That is saying we

have a certain amount of resources and therefore we can only do

up to Canal Street.

Mr. SHAYS. Is that what you are saying because that is what it

sounded like to me.

Dr. HEINRICH. There is no scientific justification for the specific

boundaries that we were able to find.

Mr. SHAYS. I think we have to acknowledge that is the fact. I

think we also have to acknowledge, given the resources available,

there were intuitive decisions made but nothing scientific and I

think we can agree on that. I appreciate my colleague’s line of

questioning.

I wrestle with this. Having been in the Twin Towers, thinking

how tall they were, thinking of what was in them, the marble, the

construction material, it was pulverized, the pressure and so on

just pulverized all of that and it was smothering until well past December or at least to December.

So intuitively, I make an assumption that this wasn’t good stuff

and we would expect there would be some scientific explanation as

to what was there and what wasn’t. We know it wasn’t done right

away. We know workers like the firemen who raced up the floors,

the workers that raced to the sight and we know they didn’t wear

masks, we know they didn’t wear protective gear and we also know

like some of the Gulf war syndromes, that they are sick. There are

a lot of people who are sick.

What I am seeing is a Federal, State and local effort to deal with

this and when Mrs. Maloney is asking the other very pertinent

question besides the question asked by Mr. Nadler, she was basically saying who is in charge but you can tell me who is in charge

at the Federal level, who is in charge at the State level and you

can tell me who is in charge at the local level but the problem is

we have them all mixed together.

We have the New York Fire Department, they have their system.

We have the emergency medical and certain rescue in Mount Sinai.

We have other Ground Zero responders at the registry. We have

New York State workers who are being examined as separate. We

have the people living and working in the area, they are under the

registry. We have the Federal workers being examined separately.

I think what I would ask you to do is tell me how do we sort this

out. I am not yet aware. My theory is this. If the witnesses don’t

tell us, we are ignorant of what needs to be done unless we find

out from other sources. If they tell us what we need to do and we

don’t do it, the blame rests on our shoulders but right now, you are

letting us off the hook. We need to know what needs to happen to

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bring some sense to this. Who wants to start me out in this process?

Dr. HOWARD. I will be the brave one. I would like to suggest that

the description you just gave of the very difficult nature of characterizing the exposures that existed for firefighters, other workers,

volunteers, clean-up workers, rescue and recovery workers, from

this mix of physical and chemical agents and combustion products

represents what we in science call a mixed exposure which really

strains the boundaries of our existing science in terms of understanding what the health effects are from mixed exposures.

I think often science proceeds too slowly for all of us but there

is value in the fact that there are multiple different programs looking at this same issue, in different populations, granted, but they

all will, over the next 6 to 12 months, be producing peer reviewed

science articles as the one I referred to coming out this Friday in

CDC’s MMWR, that will help us answer the question that Mrs.

Maloney raised and everybody is interested in: what is the prevalence of health effects on a chronic nature that comes from this

population, albeit a sample of this population because we don’t

have the whole denominator.

I think what we need to concentrate on is making sure the existing programs we have are, and I agree with the committee’s questions, coordinated well, they are speaking to each other, the people

they are representing, the participants, the registrants and their

representatives are fully involved in all the advisory committees for

those programs and those advisory committees are coordinated.

Mr. SHAYS. The problem is committees create camels when they

are trying to create a horse. Is there a recommendation from any

of you of who should try to coordinate all this? Should it be New

York State, the Federal Government? The Federal Government is

providing most of the money it seems to me. Is that correct?

Dr. HOWARD. Through FEMA. FEMA provides most of the

money; it comes to HHS, CDC, NIOSH, ATSDR and it goes out to

the individuals.

Mr. ROBERTSON. The worker comp program is a State program. There was $125 million for processing the claims and then two pots

of $25 million each, one for workers associated with uninsured employers and the other for volunteers.

Mr. SHAYS. I really believe there has to be one person in charge,

maybe somebody who takes charge to coordinate and an agreement

on the part of State and local governments. If it is the Federal Government, let them do it or the Federal Government needs to agree

that it is the State, but one person basically looking to coordinate

all this activity.

Tell me what steps should be taken to ensure that money and

programs will be in place to look at the long term effects. This is

running out, correct? So what do we do?

Dr. HOWARD. As I said previously, I think that the findings that

will be coming from the programs already funded, from the registry, from the Mount Sinai program which will be funded for 5

years now, that data will speak louder than any of us at this table

and I think it will give us a direction as to where we need to go

in terms of continuing monitoring as well as research.

Mr. SHAYS. When is it going to give us that direction?

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Dr. HOWARD. I would say very shortly. I would say since Mount

Sinai has nearly 12,000 of its cohort participating, monitoring results—and Dr. Levin will speak to this on the second panel—will

come out very shortly. As I say, the first report will come out this

Friday. I think the report will be of concern.

Mr. SHAYS. But in the case of cancers?

Dr. HOWARD. That is a more long term thing and that is why I

said the findings that come out that we have will inform us as we

go through these periods of time.

Mr. SHAYS. We have one witness who has made some very helpful recommendations. I would like recommendations from all of

you. What steps can we take to improve the process, how can we

make sure this is better coordinated, and so on.

Dr. WILLIAMSON. I would certainly talk for the registry. One of

the things we have done since September 11 is try to put into place

a rapid response registry program so that we will be able to more

quickly respond to emergencies. It is important to be able to identify the expertise that would be available on an as needed basis as

quickly as possible to be brought to bear on the impacted emergency situation as quickly as possible.

We are in the process at CDC and ATSDR of putting together

this rapid response registry program. This is one of the recommendations we have seen as a result of September 11 that we

are trying to implement, we are hoping to be able to do things on

a much quicker basis.

Dr. HEINRICH. Most of these programs are funded, I think all of

them are funded, through different organizations, entities within

CDC, and one approach might be that we ask CDC to be more

proactive in its role for coordinating these programs. Certainly one

effort it has already started it sounds like is having centers that

have responsibility for coordinating the data because at a minimum, you would want somehow to be able to look at these findings

across these various programs. It sounds like maybe you can do it

for a couple now but not for all.

It is the Federal Government that has the money but you have

to form a partnership with the people on the ground and I think

that is what they are trying to do but the mechanism for that is

the one they are using which is the cooperative grant program.

Mr. SHAYS. If there is ever a justification for a committee to

write a report on recommendations, this is one of them because if

everybody is doing their job to the best of their ability and in many

cases, quite well, but they are all part of what I view as not a coordinated effort. Mr. Robertson, what happens when the $25 million in Federal funds designated for volunteers and workers comp

has disappeared?

Mr. ROBERTSON. That is a great question and I think it illustrates some of the points you have tried to make. Basically, when

those funds are used up, the benefits for those volunteers are used

up. We probably should do more thinking in terms of trying to do

some analysis now to figure out if and when those funds will run

out and what we will do under those circumstances.

Mr. SHAYS. We need to get to the next panel. Is there anything

you felt needed to be a part of the record that is not part of the

record?

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Mrs. MALONEY. I have one brief question. In your testimony, Dr.

Howard, you talked about in collaboration ‘‘with informal network

of occupational specialists, CDC helped facilitate the production of

a guidance document to assist community-based physicians in the

medical evaluation of patients exposed to the disaster.’’ I want to

compliment CDC on their response to SARS and sending out medical directives but I have not found one doctor who got this communication. I have had many cases reported to us where people went

to doctors and were told they had asthma and then found they

really had glass in their lungs.

If there is such a document that you provided, probably one of

the leading authorities is Dr. Levin. Several of you mentioned he

is going to be releasing this report on September 10 and I would

say he is definitely considered a leader in the field. When I talked

to him about this issue, he said he had not received any guidance

from CDC on the health response to the World Trade Center disaster. So if you do have a document, I would like to have that as part

of the record.

I would like to close with what I think is the most important aspect, that there is no health coverage for people we call heroes and

heroines and we talk about how they selflessly gave their lives or

injured themselves in helping others and yet they have no health

coverage. I had one firefighter who 3 years later can no longer

work. He said he saved two lives, pulled them out of the debris.

Now his health condition is so terrible, he can no longer work and

he has no health coverage. What are we going to do for health coverage?

Mr. SHAYS. Let us close quickly with that question and get on to

our next panel. Is there a comment about health care coverage?

Dr. HOWARD. It is hard to quickly respond to that. Obviously

health care provision is not contemplated in these medical screening programs. It is a large public policy issue and I have no expertise.

Mr. SHAYS. So the answer basically is they are not covered and

this rests on whose responsibility? Is this a Federal, State or local

responsibility? Is this something we need to be debating? The bottom line is you are putting on the record there is no health coverage?

Dr. HOWARD. My understanding is these are medical screening

programs, and medical monitoring programs, not medical treatment programs, but in the case of the Mount Sinai program with

which I am most familiar, referrals are made for medical treatment

when appropriate.

Mr. SHAYS. To be continued.

Mrs. MALONEY. And we have put in the ‘‘Remember 9/11 Health

Act’’ which would provide health coverage to those who were injured at September 11.

Dr. HEINRICH. Just one comment on that final point. Many of us

learned in public health that there is something ethically wrong

when you screen for disease, find it and then don’t treat it. That

is the dilemma we are in.

Mr. SHAYS. Let us end on that note because that maybe will get

us all thinking about what we do about it.

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Thank you. You have been an excellent panel. We appreciate

your work in government and your effort to make this a better

place and to help these victims. Thank you.

The Chair will now recognize our second panel. We have Dr. Stephen Levin, co-director of the World Trade Center Worker and Volunteer Medical Screening Program; Dr. Michael Lonski, director,

training and program development, Life Matters; Dr. James

Melius, administrator, New York State Laborers Health and Safety

Fund; Mr. Stan Mark, esq., program director, Asian American

Legal Defense and Education Fund; and Ms. Micki Siegel de Hernandez, health and safety director, Communications Workers of

America.

Mrs. MALONEY. May I request we place into the record a report

written by the Sierra Club, ‘‘Pollution and Deception at Ground

Zero?’’

Mr. SHAYS. Yes. Without objection, so ordered.

[The information referred to follows:]

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[Witnesses sworn.]

Mr. SHAYS. I would appreciate it if our witnesses could give their

testimony in 5 minutes. We have some time restraints. We have

some votes on the floor and testimony on the floor we need to participate in.

Dr. Levin, thank you.

STATEMENTS OF DR. STEPHEN LEVIN, CO-DIRECTOR OF THE

WORLD TRADE CENTER WORKER AND VOLUNTEER MEDICAL SCREENING PROGRAM; DR. MICHAEL LONSKI, DIRECTOR, TRAINING AND PROGRAM DEVELOPMENT, LIFE MATTERS; DR. JAMES MELIUS, ADMINISTRATOR, NEW YORK

STATE LABORERS HEALTH AND SAFETY FUND; STAN MARK,

ESQ., PROGRAM DIRECTOR, ASIAN AMERICAN LEGAL DEFENSE AND EDUCATION FUND; AND MICKI SIEGEL DE HERNANDEZ, HEALTH AND SAFETY DIRECTOR, COMMUNICATIONS WORKERS OF AMERICA

Dr. LEVIN. I am Stephen Levin, medical director of the Mount

Sinai-Selikoff Center for Occupational and Environmental Medicine

and I am co-director of the World Trade Center Worker and Volunteer Medical Screening Program.

I want to thank Congresswoman Maloney and you, Congressman

Shays, for inviting me to speak today about the health consequences of exposures during World Trade Center recovery efforts

and what we see as the unmet needs of the people whose health

has been affected.

Our Center for Occupational and Environmental Medicine at

Mount Sinai has a long history of providing medical services to the

working people of the New York Metropolitan area, their unions

and their employers. We were well known to many of the workers

who responded to the attacks on the World Trade Center Towers

and to their unions and began seeing responders, evacuees, returning office workers and residents of lower Manhattan within a few

weeks of the World Trade Center attacks.

It was clear to us almost immediately from this clinical experience that the exposures to the mix of respiratory irritants like pulverized concrete, hydrochloric acid mist and fibrous glass present

in the air at and near Ground Zero caused respiratory problems,

including sinusitis, laryngitis, asthma and bronchitis, acid reflux

from the stomach known as GERDS and that the horrors that

many had witnessed there caused stress-related psychological

symptoms and depression.

Responding to the appeal of organized labor who were aware of

the problems their members were developing and whose members

made up the majority of the workers and volunteers involved in the

rescue and recovery work, the cleanup and the restoration of essential services in lower Manhattan, the New York congressional delegation was successful in securing funds to establish two medical

screening programs, one for New York City firefighters and another

coordinated by our group at Mount Sinai for all other World Trade

Center workers and volunteers, each to evaluate clinically some

12,000 World Trade Center responders.

We are grateful to the Centers for Disease Control and to the National Institute for Occupational Safety and Health for their supVerDate 11-MAY-2000 12:10 Mar 28, 2005 Jkt 000000 PO 00000 Frm 00126 Fmt 6633 Sfmt 6633 D:\DOCS\98999.TXT HGOVREF1 PsN: HGOVREF1
123

port and their assistance in establishing these important programs

whose mission it was to identify those who were ill as a consequence of their World Trade Center efforts and to make sure

they were referred for appropriate care but not to provide that care

since no resources were made available for treatment of World

Trade Center related illnesses or for additional medical testing and

individual responder might need. The firefighter and Mount Sinai

programs have identified similar health consequences among World

Trade Center responders, asthma, bronchitis, sinusitis, laryngitis,

digestive problems. These illnesses are remarkably persistent.

We analyzed what was found clinically among 250 of the first

500 responders that we examined at the Mount Sinai program and

we began seeing responders in August 2002 far too long after the

event occurred and reported that nearly half of these men and

women still experienced at the time of their examination at least

one pulmonary symptom. By that, we mean wheezing, chest tightness, cough or shortness of breath and this was a minimum of 10

months after the September 11 event. Over half had persistent ear,

nose and throat symptoms and over half had persistent evidence of

psychological distress severe enough to warrant further evaluation

by a mental health professional.

We recently updated our analysis to include the medical findings

of over 1,100 responders seen in our program and that has been referred to several times today. It will be appearing in the MMWR

in 2 days. I am not allowed to cite actual data from that figure

until the report is released but I can tell you this. The results point

to similarly high rates of persistent respiratory, digestive tract and

psychological disorders in this larger group.

We know that we have examined only a fraction of the workers

and volunteers whose health may have been affected by their

World Trade Center efforts and there is reason to believe there are

many who have not undergone screening examinations who have

persistent World Trade Center related illnesses. Fortunately, funding has been obtained from the CDC and NIOSH for medical followup exams of the World Trade Center responders for the next 5

years and we will be able to bring in additional workers for their

baseline examinations during this first year of the longer term program.

This program will give us an opportunity to evaluate the course

of these shorter term illnesses and to some extent the response to

various treatment approaches and to identify those who still need

medical and psychological care for those conditions that occurred

shortly after exposure but there remains the issue of long term consequences of World Trade Center related exposures. This witches

brew of airborne materials found at and near Ground Zero where

a number of carcinogens, cancer causing agents, including asbestos

and the class of compounds known as PAHs, polycyclic aromatic

hydrocarbons, the cancer causing chemicals in tobacco smoke.

If we are to detect the cancers that may develop as a result of

these exposures encountered during the recovery effort at a time

when treatment may be more effective, this group of responders

has to be followed for at least another 20 plus years since such cancers most often occur at least 20 years after the onset of exposure

to the cancer causing agent. I think our description of what hapVerDate 11-MAY-2000 12:10 Mar 28, 2005 Jkt 000000 PO 00000 Frm 00127 Fmt 6633 Sfmt 6633 D:\DOCS\98999.TXT HGOVREF1 PsN: HGOVREF1
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pened 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.

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The Red Cross and the New York Psychological Institute estimate there are between 125,000 and 150,000 Manhattan residents

alone who have fully diagnosable post-traumatic stress disorder.

Mount Sinai researchers working with Ground Zero workers say

more than 40 percent are suffering from mental health issues. A

recent study by Smithers at Cornell’s School of Industrial and

Labor Relations found significant evidence of continued depression,

stress, anxiety and grief and an increased risk for drinking problems among activity FDNY members post-September 11. So in 3

years, we have reached barely 20 percent of those who most dramatically need our help.

Let me explain what someone suffering from PTSD goes through

and why this is a problem for us all. PTSD moves on a very predictable course from shock, to upset, to dysfunctionality. Key to

their trauma is their perception that the world is not a safe place

and that those in charge of protecting us have failed to do so. They

are continually flooded with uninvited thoughts, flashbacks, day

dreams and rivalry, nightmares and night terrors. Everything begins to look like a threat.

To protect themselves, they withdraw emotionally, buffer or

medicate themselves or act out. They engage in negative behaviors

to feel good, to feel alive or simply to feel anything at all. They become so preoccupied with warding off reminders that they lose

their perspective of right and wrong. They fail to discriminate between external and internal triggers, judgment becomes impaired

and anyone suffering from PTSD can become a time bomb.

Their explosions and implosions rock us all. Suicide, domestic violence, murder, divorce, criminal activity, inappropriate sexual activity, feared and actual debilitating disease and premature death.

The loss of the talents and contributions of people who are otherwise vital and valued members of our society, that tragedy envelopes spouses, children, family and friends in the cycle of trauma,

grief and loss is then renewed. We lose another generation and terror wins, no further attacks, just collateral damage from the original impact.

Those in need must understand that help is available and self

help is possible. Those in power must commit the resources, financial and otherwise, required to prevent what uniformed first responders call a BLEVE, a boiling liquid expanding vapor explosion

or be prepared to suffer in the fallout. We must rebuild victims’

trust and help them reconnect with the world.

In our work, we continue to find ways to respect peoples’ privacy

and their integrity while reaching through their self protective isolation. Through flexible, tested and true, theoretically based,

proactive outreach, education and support, we walk with them the

paths of health, resiliency and hope. At issue is not just one man’s

unease but a family’s ability to function and ultimately security for

us all.

Thank you.

[The prepared statement of Dr. Lonski follows:]

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Mr. SHAYS. Thank you.

Dr. Melius, you have a very long statement. I will be crushed if

you don’t get to your recommendations, so don’t play a trick on me

and use up all the other time and force me to not let you do your

recommendations. I want to hear every one of your recommendations. Don’t leave them out.

Dr. MELIUS. As I have been sitting here, I have been planning

to skip most of the beginning of the statement and go directly to

the recommendations.

Mr. SHAYS. We really appreciate your recommendations. Very

helpful.

Dr. MELIUS. Thank you for holding this hearing and for your continued interest in this issue. I think it is important. Clearly in the

absence of anybody at the Federal Government level, the agencies

being in charge, it is a badly needed function. I really do applaud

you for making this effort.

I represent people in the construction industry working for the

laborers’ union in New York. Throughout the country, I also work

with our international union. I have also served many years as an

advisor for the firefighters union around the country and have experience in dealing with other emergency incidents with them.

My testimony covers the involvement of the construction workers, what our exposures were, what some of our concerns were. As

I said, I will skip that and go to the recommendations.

Mr. SHAYS. Your full statement will be in the record.

Dr. MELIUS. I would like to say that one thing that was very important to us as a resource in New York that without would have

been a bigger problem to address and that was Mount Sinai Hospital. They really had the expertise and the capability to be of

great assistance while these programs were being set up. We were

able to refer many people there for treatment.

In my statement, I made six recommendations. I will go through

each. They deal with both the World Trade Center medical followup as well as with followup for other incidents.

The first repeats a point that I think you already made. We need

a comprehensive and rapid medical response for these types of incidents. We can’t wait a year or two to get a program in place. We

need to have people in a coordinated fashion there immediately. We

need them there because we can’t expect local governments, local

construction companies, local agencies to have the expertise, the resources and the capabilities to deal with it. This needs to be set up

and included in planning efforts for future disasters.

That program can’t wait 2 years for setting up a medical program or a year. It needs to be set up as quickly as possible and

needs to think about the need for monitoring. The issue Congressman Nadler raised, we need and should have had and in future incidents we need comprehensive environmental sampling that will

think about the possible health risks for people involved. It is needed to help protect them and needed to be able to address who is

at risk, what type of future medical programs do we need for those

who have been exposed.

In my testimony, I mentioned some of the frustrations at the

time in dealing with both this incident and getting environmental

data, as well as with the simultaneous efforts going on with the anVerDate 11-MAY-2000 12:10 Mar 28, 2005 Jkt 000000 PO 00000 Frm 00144 Fmt 6633 Sfmt 6633 D:\DOCS\98999.TXT HGOVREF1 PsN: HGOVREF1
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thrax incidents where people in the medical community or in my

case representing workers involved, where it was very frustrating

to figure out who to call to get information. That needs to be developed immediately after these incidents.

Three, we also need to recognize these programs need to go on

for a long period of time. As I mentioned, I previously worked for

both Federal and State Government and have been involved in

other incidents usually involving fire departments and response to

toxic exposure. One was the Elizabeth chemical control fire in New

Jersey across from New York over 20 years ago where there was

an immediate response but then nothing was done long term for

the people involved.

It is difficult to budget that, to estimate what kind of resources

may be needed but we have to have a mechanism in place whether

through Homeland Security in these instances, through Health and

Human Services, I don’t know but there should be a program place

that can fund those programs over the long term, provide the support and guidance needed to implement that type of program.

I think we have already heard some of the problems because people develop programs in response to the resources that were available rather than to projected needs. Because of that, we may never

know the number of people that were affected or will be affected

from the World Trade Center. This has to be done up front. People

have to know full resources will be available.

That program has to also be comprehensive and include everyone. We can’t make arbitrary decisions based on a street, where

people worked on a site, whether they worked or whether they

were a member of the general public that were exposed. It may

take some time to sort out, some people may need different

amounts of medical followup to different degrees but we need to

have that comprehensive program in place that covers everybody.

My fifth recommendation is that we need to think about the future rights of these people. They need to be protected. This addresses issues related to the workers compensation. A lot of concern about the reluctance of our members and other union members to participate in the registry programs, is because we don’t

feel the rights of our members are being protected and some of that

information may be used against them 10 years from now.

Mr. SHAYS. Give me a short example of how information can be

used against you.

Dr. MELIUS. For example, if someone does an analysis of that

data, especially given how incomplete it is, it only covers such a

small number, and there is a report that says we found in a certain

subpopulation no health effects.

What if one of our members who could fit the definition of that

subpopulation applies for workers compensation? Their employer or

insurance company may use the information in that registry to contest that claim. Also, it is not completely clear how their privacy

will be protected in that registry.

Will somebody be able to go in and get information on them and

other participants and somehow use that to discriminate against

them in some way? We are particularly sensitive to that given

some of the problems with the workers compensation system in

New York as well as other States.

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At the same time, it is important that we assure people there is

a long term, comprehensive, compensation program for them. I applaud what you have done so far.

Finally is the treatment issue. The programs put in place must

include more work on treatment. There needs to be resources for

people to get treatment as well as some medical research and effort

made to try to determine what are the best treatments. We don’t

know that for some of the conditions related to the World Trade

Center. We need to learn more about that and provide resources.

In Mount Sinai and the other programs we are doing an excellent job of referring people but not everyone has complete health

insurance, not every physician is as familiar with what kinds of

treatment might be needed and there are limitations. People aren’t

getting the treatment they need because of that. I think that is a

disservice to them.

Thank you. I will end there and be glad to answer questions.

[The prepared statement of Dr. Melius follows:]

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Mr. SHAYS. Thank you very much.

Mr. Mark.

Mr. MARK. I would like to start with my recommendations.

My clients at the Asian American Legal Defense Fund as well as

many of the community people I work with support the ‘‘Remembering 9/11 Health Act’’ and the fact that it would cover many of

the people in the lower East Side and Chinatown who are without

insurance or don’t have the right insurance coverage. We feel that

particular legislation should be passed.

In addition, I think it also addresses some of the concerns raised

in the previous panel about coordinating efforts. One of the problems we had in my office was we believed that the funding for

Mount Sinai would cover treatment as well but we understand that

it did not. When we heard that, we felt it really undercut our efforts to try to get funding for our joint clinic work with many of

the organizations and specifically partnering with Bellevue Hospital to address the health needs of people in the lower East Side

and Chinatown.

I would also mention that at this point we are now engaged in

this joint clinic. We can’t wait for that coordination to take place,

we can’t wait for that funding to take place, so in the last 4 months

or so, we have been going through 400 apartments and visited 400

families, we have done outreach tables in the summer months

reaching thousands of people, trying to get people who were

harmed by September 11 to participate in this clinic program. We

have now booked many appointments for people to be screened and

treated at Bellevue Hospital at the Asthma Center. There is at

least a month’s waiting list.

I am bringing this up as a point that studying the health impact

shouldn’t be limited to Ground Zero but that they extend way beyond Ground Zero and include communities of color in the lower

East Side and Chinatown which have not gotten sufficient resources when it comes to health care.

My office is a civil rights organization. We represent many garment and restaurant workers on the Lower East Side and Chinatown who work in sweatshops. We also represent people who are

South Asians and Muslims, who have been denied due process

after September 11, and who have been detained preventatively

and secretly. We also have had work in voting rights and on a

weekly basis, we register people to vote at the courthouse, about

300 people every week, who are sworn in as new, citizens are registered to vote.

Since the September 11 attack, our Federal and local agencies

have not fully addressed the public health emergency resulting

from the collapse and fallout from the World Trade Center. Lower

Manhattan residents in the neighborhoods adjacent to Ground Zero

and surrounding areas such as Chinatown and the lower East Side

witnessed the attack and now live and work in buildings that are

contaminated or recontaminated with asbestos, mercury, lead,

dioxin and other toxic compounds. Many have respiratory ailments

and lung damage, skin rashes, gastronomical disorders and other

illnesses, or express anxiety about their health and the health of

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ing east of Ground Zero are still seeking health coverage and medical treatment for these illnesses.

Federal resources for treatment and long term studies must be

made available immediately to address the unmet health needs of

thousands of people who live and work in lower Manhattan. Furthermore, resources must be made available to strengthen the public health infrastructure in order to meet the threat of chemical or

biological attacks such as anthrax.

The full scope of the public health emergency and the resulting

environmental health impact have not been adequately addressed

and acknowledged by the Federal and local government agencies.

Government agencies did not conduct representative sampling

which uses detection devices laid out in concentric circles from

Ground Zero to collect air, dust and water samples to measure the

fallout, its range and to gather data.

The Center for Disease Control did not issue health advisories

urging health professionals to look out for the symptoms of illnesses resulting from the fallout. For months, the dust and stench

filled the air throughout lower Manhattan and seeped into the

homes and offices, factories and businesses. Trucks hauled debris

from the fire at Ground Zero.

These trucks and dumpsters were parked on the streets on the

lower East Side and Chinatown, along Henry, Clinton and Jefferson Streets and behind Stuyvesant High School. The debris was

eventually hauled to the Freshkills Landfill. The World Trade Center dust circulated in the air and was blown throughout lower

Manhattan and continued to make people sick. People who live and

work in the buildings located in Battery City, John Street, Cedar

Street, Liberty Street, Pearl Street and downtown Broadway have

testified at public forums and hearings about their poor health and

the lack of adequate testing and cleanup.

These residents continue to struggle with government agencies to

test and clean their buildings still contaminated with dangerous

heavy metals and toxic compounds that remain or spread through

heat and air conditioning systems, elevators, carpets, window

ledges and other common areas. Recontamination remains a serious concern since the clean up 1 year after September 11 was at

best incomplete. Without full participation and cooperation to clean

an entire building, this leaves the distinct possibility that recontamination would occur, even assuming the initial cleaning for

some apartments was properly done for part of the building.

During 2002, at community town hall meetings, rallies and

marches in New York City and Washington, DC, thousands of

Chinatown residents assisted by a group known as Beyond Ground

Zero Network, which my office is part of, had demonstrated and demanded that health care coverage, medical treatment and research

studies must be at the top of priorities for our government agencies

and institutions committed to rebuilding New York. Health care

must be made a priority with adequate resources to cover long

term treatment and studies for all people affected by September 11

including residents of Chinatown and the lower East Side.

Government officials and agencies must be held accountable for

the delay in initiating full health coverage, treatment and studies

covering the residents of Chinatown and the lower East Side.

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Given the wide scope of harm and the shortage of resources targeted for health care and the research studies covering people of

color living in Chinatown and the lower East Side, we need a

stronger commitment from our leaders and institutions to make

these resources available.

[The prepared statement of Mr. Mark follows:]

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Mr. SHAYS. Thank you.

Ms. Hernandez.

Ms. HERNANDEZ. Thank you for keeping this issue current as it

has been for us since the beginning.

My name is Micki Siegel de Hernandez. I am Director of Health

and Safety Programs for the Communications Workers of America

and CWA District I which is the northeast district of CWA. I am

also the Alternate Community Liaison to the EPA Expert Technical

Review Panel, so I also bring a collective view from both residents

and also labor groups in the area.

I am here today because of the effect the World Trade Center has

had on our members. Many of our CWA members have developed

September 11 related illnesses. We don’t know what the future

holds in terms of chronic disease. We believe there are still huge

gaps that need to be filled in the government’s response to assess

the September 11 health effects.

Our members have been part of both the evacuation, we had 11

members who died in the collapse of the Towers, we have thousands of members who work in downtown Manhattan and we also

had thousands of members who worked at Ground Zero. At Ground

Zero, our largest group was the telecommunications workers from

Verizon and some from Lucent who repaired the telecommunications infrastructure in New York City.

The report that Dr. Levin and also the GAO referred that came

from the WTC Worker and Volunteer Medical Screening Program

that looked at the sample of 250 of the first 500 responders, 44 percent of that group were CWA members.

The World Trade Center Worker and Volunteer Medical Screening Program is severely underfunded. There have never been Federal funds for treatment. It is a wonderful program but it stops.

We also don’t know what kind of followup care our members are

getting. The new Worker and Volunteer Medical Monitoring Program is only funded for another 5 years, so we are talking about

approximately three exams for those workers who came for their

baseline and again, there is no future. We need some early recognition and treatment of disease.

We also believe that the model in terms of the funding from the

Federal Government is what should be adhered to. We believe the

Consortium of Occupational Health Clinics should play the key role

in that continued program. We have also had experience that when

there is an employer-sponsored program, not only is it not as good

in terms of quality but that information remains varied.

We have had that with two employer-sponsored programs, one is

with ABC, we represent broadcast technicians at ABC. They did a

company-sponsored program early on. We have never received any

information about the health of our members who went through

that program. With Verizon we also were negotiating with them to

have our members be allowed to go to the World Trade Center

Screening Program on paid work time. We thought it was that important. We spent many months negotiating and we thought we

were getting close.

Coincidentally at about the time the World Trade Center program started, Verizon sent a letter home to employees saying they

were going to institute their own program, employees could go on

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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.

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A couple of the recommendations would be adequate funding for

the World Trade Center Worker and Volunteer Medical Program.

In the event of future disasters, we need to have a system in place

so there is an immediate system workers can turn to. We also need

to broaden the scope of who we think of as workers that respond

to an emergency not just workers like telecommunications workers

but many public sector workers, transit workers at the site.

We do not believe additional funding should be provided to the

registry as it is currently crafted and also would like to recommend

for future emergencies, agencies not be allowed to get rid of laws

that protect workers and the public as happened with several of

the agencies in the September 11 response such as OSHA who was

there on a consultant basis, the DEP who did not enforce their

laws for cleanup of asbestos in buildings and so forth.

[The prepared statement of Ms. Hernandez follows:]

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Mr. SHAYS. Thank you very much.

Mrs. Maloney, you have the floor for 10 minutes.

Mrs. MALONEY. Thank you all for your testimony.

Briefly with 10 words or less, I would like each of you to respond

to this question. Has the Federal Government responded adequately and if not, what should they be doing or what needs to be

done? Dr. Levin? Has the Federal response been adequate, yes or

no, and very briefly, what needs to be done, your top priority in 10

words or less?

Dr. LEVIN. The Government’s response has been a partial response. It has enabled us to identify illness among a small section

of those who responded and were affected by World Trade Center

exposures. What is needed is one, resources to evaluate those who

were exposed who have not yet been examined, resources to provide treatment, additional testing when diagnostic work has to be

done beyond what screening programs can do and we surely need

to have in place a mechanism for a rapid clinical response, an evaluation response and a treatment response should there be disasters

in the future that pose the same sorts of risks.

Dr. LONSKI. It has been mixed. The Federal Government’s response has been frustrating for us as an organization. I think you

heard today we are probably the only group represented today who

does treatment, proactive treatment to not only directly with mental health stresses involved in ongoing work as uniformed and civilian first responders and civilian members after September 11 but

we are the only organization that links between the Chinatown

community, the Mount Sinais, the labor organizations and tries to

get out the word to those people about the kinds of screening and

help that are available behind the scenes.

Aside from the funding, we mentioned earlier through Firefighters National Trust which allows us to do the only educational,

proactive outreach program for the Fire Department of New York

in which we go out to active and retired members and help them,

give them a tool to identify when they look at themselves and the

people around them who they care about what you’re looking for

in terms of being operationally overloaded.

With that tool, those members can identify for themselves and

others much better than us. There will never be enough professionals, never enough people from the counseling unit out there.

Once they know what to look for, they can help each other get the

help available but in terms of our Federal funding through the efforts largely of Mr. Ron Dickens who is the contract supervisor

from the New York State Crime Victims Board, the Grant Division,

not the Compensation Division, we were able to get two rounds of

funding.

Unfortunately the frustration with that is the application process

for the first grant began in October 2002. Those funds come from

the Department of Justice. We were notified in April 2003 and this

is for September 11 work, that we were approved for a grant. The

first amount of money didn’t come to us until July 2003.

Mrs. MALONEY. That is a challenge but you are over your 10

words.

Dr. LONSKI. What we need according to Mr. Dickens in helping

that process along with Federal funds is to reevaluate the convenVerDate 11-MAY-2000 12:10 Mar 28, 2005 Jkt 000000 PO 00000 Frm 00176 Fmt 6633 Sfmt 6633 D:\DOCS\98999.TXT HGOVREF1 PsN: HGOVREF1
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tional 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.

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I think there are other things mentioned in my testimony but I

would say there has to be better coordination with an increased

Federal role in making sure there are no gaps and that the response is an anticipatory mode as opposed to a reactive mode.

Ms. HERNANDEZ. The quick answer is no, there has not been an

adequate response with a few exceptions. I would like to add that

there has not been an adequate response at the State level either

or at the city level.

Certainly to help the current problem, we need more funding for

the World Trade Center Worker and Volunteer Medical Program

that extends the boundaries to whoever needs it and includes residents. We need a greater role for the Federal Government in the

coordination for this and for future events. We also need a characterization.

We still don’t know how much contamination is left in downtown

Manhattan. No workplaces have ever been assessed by any agency,

so we need a scientific characterization to understand what kind of

ongoing exposures may still be occurring.

Mrs. MALONEY. I want to note that all of your comments are encompassed in the ‘‘Remember 9/11 Health Act’’ that is offered by

the chairman and myself. It covers treatment, continued monitoring throughout the life of a person, research to find out what these

toxins mean and how to better prepare for them and coordination

under Health and Human Services. I urge you to look at that bill

and see if you can help us gain more support because we do need

at the least to cover the health needs of the people who sacrificed

their health coming to help others.

Dr. Lonski, the GAO recognized six entities who were providing

health monitoring but mental health was not being monitored

within any of these six programs. Is that correct?

Dr. LONSKI. I don’t know. I do know that we are not wired to

wait for the results of these scientifically based studies. What we

know is what you know. We know all the personal stories, anguish

and grief and the fears.

Mrs. MALONEY. How great is the need? If we are not monitoring,

we have a sense from these programs how many people are sick because they are monitoring them, they are documenting their physical sickness is totally related to September 11. That is one purpose

of these monitoring programs. They are scientifically documenting

that people are sick, so we have a sense of what is out there. We

need a better sense but there is no one documenting, according to

the GAO report, mental health.

Dr. LONSKI. We reported statistics earlier from the Red Cross

and the New York State Psychiatric Institute that estimate that up

to 150,000 New Yorkers, Manhattanites alone have fully

diagnosable PTSD, not talking about post traumatic stress, not

talking about the New York Times Sunday study that links stress

equals illness, not talking about the study that was in the paper

the other day, $300 billion in costs of stress, health related stress

issues in this country alone.

When we go into the firehouses, we don’t argue. If we can be the

front end engine to get out there and let those people know whether it is construction, Chinatown, wherever it is, there is still help

available, we need to know once we get them that there is money

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from the Federal Government, the State, the city, somebody can

pay for the treatment. What kind of treatment? Somebody used the

term mixed exposures in describing what happened at Ground

Zero.

That reminded me of a couple of guys who recently got married

after September 11 who worked in what they described as a sacred,

toxic, waste zone for 7 months doing rescue and recovery. What

does that mean to them? It means they are afraid to tell their

wives they are afraid to have children with them because they

don’t know genetically what is going to happen to those babies and

they don’t know what is going to happen to them 5, 10, or 20 years

down the road. I don’t now how much of that is a medical condition

brewing or how much is stress related.

We know there isn’t enough money to pay for these guys to get

the kinds of proactive medical screenings they are looking for. They

are looking for a full body scan once a year so that if there is something percolating in their system, the experts can help them get

help right now for it. Open the windows of opportunity to other

populations.

Mr. SHAYS. I would like to ask a few questions.

First, I want to know who is getting help, who has such good coverage that they are not at the table? Tell me who they are? Is it

the fireman? I believe that because there would be such a public

outcry if all those who were impacted were not getting help. Some

are getting help. I want to know who the some are.

Dr. LEVIN. I can speak for the Fire Department’s program. I

know it indirectly and I know they do provide care to the firefighters who have been harmed by their exposure there. We have

in our program at Mount Sinai philanthropic sources to provide

care to some individuals we have identified mainly through our

screening program.

Mr. SHAYS. Are you choosing which lives and which dies? That

is an exaggeration but are you helping everyone or just deciding

who gets help and who doesn’t?

Dr. LEVIN. We take on the responsibility of trying to assure that

every individual we identify who needs care gets into care in some

fashion, some through our supported programs, some through ordinary medical channels if they have insurance, some through workers comp in the relatively rare instances that these occupational

disease cases are accepted by the insurers.

Mr. SHAYS. The workers comp issue, they are sick plus they can’t

work.

Dr. LEVIN. No. Some are working and ill, working with symptoms because if they go out because of their illness, the maximum

they can get through a long and difficult process is $400 a week

in New York State if they are declared totally disabled. Most of the

people who went down to that Ground Zero area were making

much more than that in order to pay their mortgage or rent. It is

hard for them to accommodate to $400 a week. What they don’t get

is access to medical care and their medications.

Mr. SHAYS. Someone who has basically good insurance, the firefighters are getting their health care needs but are working on the

job, still in the job.

Dr. LEVIN. Some.

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Mr. SHAYS. And some are getting compensation. They aren’t lim- ited to $400 are they?

Dr. LEVIN. The firefighters have a different program entirely.

Mr. SHAYS. It strikes me that the firefighters, basically because

they do work in this kind of stuff, this is not new experience as a

general rule?

Dr. LEVIN. I would not agree with that. I don’t think they would

either even though they have fought many fires including some

toxic fires. The breadth and seriousness of what they encountered

down there often without adequate respiratory protection has yielded a rate of respiratory problems never before seen.

Mr. SHAYS. That is because rather than putting out a fire in the

common sense, they were helping to do rescue and move construction material in some cases?

Dr. LEVIN. Day after day, 12–16 hour days on that pile.

Mr. SHAYS. What are the parallels and I have no right as a doctor given that I am not to make these analyses but I will tell you

as someone who sat in on countless hearings on illnesses, the one

thing that impressed me is when people are under stress, their system functions differently and may become more receptive to serous

illness. There was huge stress here. Tell me who is getting help.

Mrs. MALONEY. May I ask a clarifying question? Dr. Levin, if

someone is a firefighter and comes to you for help, his insurance

and his job covers it but if they become so ill they can no longer

work, don’t they lose their health coverage?

Dr. LEVIN. Let us not talk about the firefighters who are in a

very particular position. The construction workers are exactly as

you said.

Mrs. MALONEY. Workers have told me they have become so sick

that they lose their job and then don’t have health benefits.

Mr. SHAYS. That is why I want to go there. It is easier to find

out who is getting health care and maybe the compensation because there are less of them. Firefighters would tend to have a better shot.

Dr. LEVIN. Yes.

Mr. SHAYS. Who else?

Dr. MELIUS. I think the unionized construction work force would

as long as they can continue to work. Once they stop working either because of economic down turn or because they are disabled,

then they lose their health coverage after a period of time, so they

become more vulnerable. The other factor depends on the health

condition they have and the type of treatment, how much coverage

they have, how much medication, how much of the medication is

covered. Medication costs can get into the thousands of dollars per

year that may or may not be covered depending on their health

plan.

We have people that work in construction and other jobs with no

health coverage and are certainly the most vulnerable.

Mr. SHAYS. The people who can come to the hospital to basically

have their condition reviewed are workers not residents?

Dr. LEVIN. Right. The residents can come to our Center for Occupational and Environmental Medicine but cannot get access to that

screening program that is federally funded.

Mr. SHAYS. But you do not take on the firefighters or you do?

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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

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a Federal immediate response to any type of tragedy that comes in

and tests the condition of the work environment. We understand

why that didn’t happen in this instance. We wanted to jump in

right away but there needs to be a mechanism to do that. There

needed to be absolute requirements on the workers that they have

proper equipment and if they wanted to go in, people should have

held them back until they had better equipment because in trying

to save a life, they put their own lives in huge danger.

It seems to me you need to monitor and we need to sort out

whether it is Federal, State or local but there needs to be the monitoring, Federal dollars maybe but constant monitoring of the condition, knowing the pool we are dealing with and then they need

counseling, health care. Lord knows what it must be like for the

families and individuals involved.

I am going to encourage my staff to do some additional homework on this without a hearing to try to make an assessment. I

don’t think we can get a report done before we adjourn but it will

be my goal to make sure this subcommittee follows up on this because it simply has to happen.

Mrs. MALONEY. I wanted to thank you for your leadership and

state at the very least we can followup on Dr. Lonski’s recommendation that we come forward with a listing of what is available, where people can go which would be helpful. All of you pointed out we need treatment and I thank all of you for your work.

Mr. SHAYS. Dr. Lonski.

Dr. LONSKI. Our treatment request is for funding because in 3

weeks our Department of Justice grant will expire, in 3 weeks and

there is no, as of yesterday morning from Mr. Dickens, there is no

Federal funding available to organizations like ours direct or

through grants.

Mr. SHAYS. When does other funding run out?

Mr. LEVIN. For the monitoring program, we will continue for another 5 years.

Mr. MARK. In the current registry, I believe there would be much

greater participation if it was publicized that people would be given

treatment as well and not wait 2 years later for its startup. I would

add that any type of monitoring or response must include an educational campaign not only for doctors but come from the CDC, and

also a campaign that actually tells people what is available and

they will get treatment. That would be an incentive to step forward

and participate in long term studies.

Ms. HERNANDEZ. I agree with what Stan said. We need a long

term solution to this problem. One thing clear from the beginning

is every step of the way has been frustration and piecemeal and if

we can start pulling that together, I think that would go a long

way to protecting the health of our workers and the residents.

Mr. MELIUS. I have nothing further.

Mr. SHAYS. I appreciate your getting us started with recommendations. We appreciate the testimony of all our witnesses on

both panels.

If there is nothing further, we will adjourn.

[Whereupon, at 3:05 p.m., the subcommittee was adjourned.]

[The prepared statement of Hon. Edolphus Towns and additional

information submitted for the hearing record follows:]

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