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ANSWERING THE CALL: MEDICAL MONITORING

AND TREATMENT OF 9/11 HEALTH EFFECTS

HEARING

BEFORE THE

SUBCOMMITTEE ON HEALTH

OF THE

COMMITTEE ON ENERGY AND

COMMERCE

HOUSE OF REPRESENTATIVES

ONE HUNDRED TENTH CONGRESS

FIRST SESSION

SEPTEMBER 18, 2007

Serial No. 110–64

(

Printed for the use of the Committee on Energy and Commerce

energycommerce.house.gov

COMMITTEE ON ENERGY AND COMMERCE

JOHN D. DINGELL, Michigan, Chairman

HENRY A. WAXMAN, California

EDWARD J. MARKEY, Massachusetts

RICK BOUCHER, Virginia

EDOLPHUS TOWNS, New York

FRANK PALLONE, JR., New Jersey

BART GORDON, Tennessee

BOBBY L. RUSH, Illinois

ANNA G. ESHOO, California

BART STUPAK, Michigan

ELIOT L. ENGEL, New York

ALBERT R. WYNN, Maryland

GENE GREEN, Texas

DIANA DEGETTE, Colorado

Vice Chairman

LOIS CAPPS, California

MIKE DOYLE, Pennsylvania

JANE HARMAN, California

TOM ALLEN, Maine

JAN SCHAKOWSKY, Illinois

HILDA L. SOLIS, California

CHARLES A. GONZALEZ, Texas

JAY INSLEE, Washington

TAMMY BALDWIN, Wisconsin

MIKE ROSS, Arkansas

DARLENE HOOLEY, Oregon

ANTHONY D. WEINER, New York

JIM MATHESON, Utah

G.K. BUTTERFIELD, North Carolina

CHARLIE MELANCON, Louisiana

JOHN BARROW, Georgia

BARON P. HILL, Indiana

JOE BARTON, Texas

Ranking Member

RALPH M. HALL, Texas

J. DENNIS HASTERT, Illinois

FRED UPTON, Michigan

CLIFF STEARNS, Florida

NATHAN DEAL, Georgia

ED WHITFIELD, Kentucky

BARBARA CUBIN, Wyoming

JOHN SHIMKUS, Illinois

HEATHER WILSON, New Mexico

JOHN B. SHADEGG, Arizona

CHARLES W. ‘‘CHIP’’ PICKERING,

Mississippi

VITO FOSSELLA, New York

STEVE BUYER, Indiana

GEORGE RADANOVICH, California

JOSEPH R. PITTS, Pennsylvania

MARY BONO, California

GREG WALDEN, Oregon

LEE TERRY, Nebraska

MIKE FERGUSON, New Jersey

MIKE ROGERS, Michigan

SUE WILKINS MYRICK, North Carolina

JOHN SULLIVAN, Oklahoma

TIM MURPHY, Pennsylvania

MICHAEL C. BURGESS, Texas

MARSHA BLACKBURN, Tennessee

PROFESSIONAL STAFF

DENNIS B. FITZGIBBONS, Chief of Staff

GREGG A. ROTHSCHILD, Chief Counsel

SHARON E. DAVIS, Chief Clerk

DAVID L. CAVICKE, Minority Staff Director

(II)

(III)

SUBCOMMITTEE ON HEALTH

FRANK PALLONE, JR., New Jersey, Chairman

HENRY A. WAXMAN, California

EDOLPHUS TOWNS, New York

BART GORDON, Tennessee

ANNA G. ESHOO, California

GENE GREEN, Texas

Vice Chairman

DIANA DEGETTE, Colorado

LOIS CAPPS, California

TOM ALLEN, Maine

TAMMY BALDWIN, Wisconsin

ELIOT L. ENGEL, New York

JAN SCHAKOWSKY, Illinois

HILDA L. SOLIS, California

MIKE ROSS, Arkansas

DARLENE HOOLEY, Oregon

ANTHONY D. WEINER, New York

JIM MATHESON, Utah

JOHN D. DINGELL, Michigan (ex officio)

NATHAN DEAL, Georgia,

Ranking Member

RALPH M. HALL, Texas

BARBARA CUBIN, Wyoming

HEATHER WILSON, New Mexico

JOHN B. SHADEGG, Arizona

STEVE BUYER, Indiana

JOSEPH R. PITTS, Pennsylvania

MIKE FERGUSON, New Jersey

MIKE ROGERS, Michigan

SUE WILKINS MYRICK, North Carolina

JOHN SULLIVAN, Oklahoma

TIM MURPHY, Pennsylvania

MICHAEL C. BURGESS, Texas

MARSHA BLACKBURN, Tennessee

JOE BARTON, Texas (ex officio)

(V)

C O N T E N T S

Page

Hon. Frank Pallone, Jr., a Representative in Congress from the State of

New Jersey, opening statement .......................................................................... 1

Hon. Nathan Deal, a Representative in Congress from the State of Georgia,

opening statement ................................................................................................ 3

Hon. Eliot Engel, a Representative in Congress from the State of New York,

opening statement ................................................................................................ 4

Hon. Mike Ferguson, a Representative in Congress from the State of New

Jersey, opening statement ................................................................................... 6

Hon. Marsha Blackburn, a Representative in Congress from the State of

Tennessee, opening statement ............................................................................ 7

Hon. Vito Fossella, a Representative in Congress from the State of New

York, opening statement ...................................................................................... 8

Hon. Joe Barton, a Representative in Congress from the State of Texas,

opening statement ................................................................................................ 9

Hon. John B. Shadegg, a Representative in Congress from the State of Arizona, opening statement ...................................................................................... 11

Hon. John D. Dingell, a Representative in Congress from the State of Michigan, prepared statement ...................................................................................... 12

Hon. Henry A. Waxman, a Representative in Congress from the State of

California, prepared statement ........................................................................... 12

Hon. Anna G. Eshoo, a Representative in Congress from the State of California, prepared statement ...................................................................................... 13

Hon. Jim Matheson, a Representative in Congress from the State of Utah,

prepared statement .............................................................................................. 14

WITNESSES

John Howard, M.D., Director, National Institute for Occupational Safety and

Health, Department of Health and Human Services ........................................ 14

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

John Vinciguerra, Fire Department of New York (retired), New Egypt, NJ ...... 29

Prepared statement .......................................................................................... 32

Iris Udasin, M.D., associate professor, environmental and occupational medicine, University of Medicine and Dentistry of New Jersey, Robert Wood

Johnson Medical School ....................................................................................... 34

Prepared statement .......................................................................................... 36

Robin Herbert, M.D., associate professor, community and preventive medicine, Mount Sinai School of Medicine, New York, NY ...................................... 41

Prepared statement .......................................................................................... 44

Cynthia Bascetta, Director, Health Care Issues, Government Accountability

Office ..................................................................................................................... 54

Prepared statement .......................................................................................... 56

James Melius, M.D., administrator, New York State Laborers ........................... 79

Prepared statement .......................................................................................... 80

Edward Skyler, deputy mayor, administration, city of New York, NY ............... 84

Prepared statement .......................................................................................... 87

(1)

ANSWERING THE CALL: MEDICAL

MONITORING AND TREATMENT OF 9/11

HEALTH EFFECTS

TUESDAY, SEPTEMBER 18, 2007

HOUSE OF REPRESENTATIVES,

SUBCOMMITTEE ON HEALTH,

COMMITTEE ON ENERGY AND COMMERCE,

Washington, DC.

The subcommittee met, pursuant to call, at 10:00 a.m., in room

2322 of the Rayburn Office Building, Hon. Frank Pallone Jr. (chairman) presiding.

Members present: Engel, Weiner, Deal, Shadegg, Pitts, Ferguson,

Blackburn, and Barton.

Also present: Representative Fossella.

OPENING STATEMENT OF HON. FRANK PALLONE, JR., A REPRESENTATIVE IN CONGRESS FROM THE STATE OF NEW JERSEY

Mr. PALLONE. The meeting is called to order. The hearing today

is on ‘‘Answering the Call: Medical Monitoring and Treatment of 9/

11 Health Effects,’’ and I now recognize myself for an opening

statement.

Today the subcommittee is meeting to discuss an issue of great

importance, medical monitoring treatment of 9/11 health effects,

which is the first time that the subcommittee is meeting to hear

about these issues. We had originally intended to hold this hearing

last Tuesday on the anniversary of the 9/11 attacks, but due to the

funeral of our colleague, Paul Gillmor, the hearing was postponed

until today.

Now, it is hard for me to believe that it has been 6 years since

the attack on the World Trade Center and the Pentagon. It was an

event that affected our country deeply and continues to have an

impact on all of us, especially those who participated in the rescue,

recovery, and restoration effort.

It is important that, as a Nation, we recognize the extraordinary

sacrifice of everyone who responded to the terrorist attacks and

worked tirelessly in the hours, days, weeks, and months after 9/11

to help those in need and to begin clearing the site of the tragedy.

From first responders, to iron workers, to crisis counselors,

Americans from across the country put their lives on hold and

rushed to the site of the World Trade Center on the day of the attack and stayed for months after in order to assist with the recovery effort. I happened to be at this site the Friday after President

2

Bush visited, and I was amazed to see firefighters from all over.

As we were listening to the President speak, I was standing next

to a fire truck from Hialeah, FL, with all the firefighters from Hialeah. And I asked them how the truck got there, and they looked

at me like I was an idiot and said well, of course, we drove it up

from Florida. And to me, it was just amazing to see the turnout

and the fact that so many people came.

It’s been estimated that more than 40,000 people responded to

the crisis and participated in rescue, recovery, clean up, or restoration of essential services. And we are clearly indebted to them for

their efforts.

Now, 6 years later these brave men and women who helped lift

our Nation up from one of its darkest hours are now in need of our

help. Many of those who responded to the attacks on the World

Trade Center have since been plagued by health problems. One of

every eight responders has experienced symptoms of post-traumatic

stress. They have developed asthma at 12 times the rate of other

Americans. Nearly one in five has a respiratory or gastrointestinal

illness as a result of their exposure to toxins.

I have seen the impact firsthand. More than 1,000 responders

are currently receiving health services through the monitoring and

treatment clinic in my home district in Piscataway, NJ. Furthermore, residents, workers, and students who were in the area at the

time of the attack are also experiencing high rates of health problems. And I want to thank you, Mr. Engel, Mrs. Maloney, Mr. Nadler, Mr. Fossella.

One of the things that the New Yorkers, I think, have been particularly adept at pointing out is that not only do we need to be

concerned about first responders, but the people who lived and

worked at the site, of which there may be as many as 400,000 or

more from what I understand who also may have been impacted.

And we will hear about that today.

Unfortunately, for too long the concerns of the first responders

have been ignored here in Washington, and that has to change. As

chairman of this subcommittee, I am not going to let these issues

be ignored any longer. I want to be sure that there are accessible

health programs in place for responders and adequate funding for

those programs. We are here today to ensure that those who are

suffering from health problems have access to the monitoring and

treatment services they are entitled to as a result of the conditions

they endured at Ground Zero.

And I think we should be honest about the task in front of us.

It is a big undertaking for us to ensure that adequate care is provided for those in need, but that is a responsibility we must fulfill.

The cost of screening for and treating these illnesses is estimated

at $8,000 annually per person, and it is expected to increase in the

coming years. This cost should not be borne by the thousands of

responders, workers, and health professionals who risked their

health to do their job.

And, of course, it is not just our job in Congress. The Bush administration has an important role to play here as well. Unfortunately, for the past 6 years, the administration has been dragging

its feet, in my opinion, on this issue. It is sad to say, but I think

that many of those who came to our aid in the days after 9/11 feel

3

as though Congress and the President have failed to live up to the

promises that have been made over the last couple years to not

leave them behind.

And this is the first year that the administration proposed funding in its annual budget in the amount of $25 million for the

healthcare needs of World Trade Center responders. The House

does not think that was enough, and we doubled the President’s request to $50 million in our budget.

The administration said the initial $25 million was only the beginning and that it would propose additional funds once it had a

comprehensive plan in place. That comprehensive plan has yet to

appear, but in a draft plan developed by the administration, they

acknowledge that the current cost estimate for the program is

nearly $200 million a year and that it is possible the cost could

reach $712 million annually based on what they gave us.

And that’s why I joined with members of the New York congressional delegation and sent a letter to the Health and Human Services Secretary Mike Leavitt 2 weeks ago asking that they finalize

their plans immediately. We need a comprehensive plan in place so

that we can help treat and monitor all of the people whose health

was impacted by 9/11. We also sent another letter to new OMB Director Jim Nussle, asking that he live up to his predecessor’s promises and request the necessary funds to continue the process of

helping these workers. And I would ask that these letters be made

part of today’s hearing record.

In conclusion, today we will be hearing from a variety of people

about the medical monitoring and treatment of health effects

caused by the exposure to traumatic events and harmful materials.

It is my hope that this hearing will shed some light on the problem

and help us begin rectifying the situation. My idea is that we develop a legislative proposal that all of us can support. I know that

the New York delegation put together different proposals. Obviously we want to look at those and we do need to develop legislation in my opinion so that the people who had their health affected

by the 9/11 attacks are monitored and treated.

And again I just wanted to thank the witnesses. I know many

people have been trying to have this hearing for some time. Unfortunately our schedule with S-CHIP and PDUFA and everything

else has made it difficult for us to do it until now. But I do want

to thank all of you, and now I recognize Mr. Deal for his opening

statement.

OPENING STATEMENT OF HON. NATHAN DEAL, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF GEORGIA

Mr. DEAL. Thank you, Mr. Chairman. First of all, I would like

to ask unanimous consent that Mr. Fossella, a member of the full

committee, be allowed to participate in this hearing today.

Mr. PALLONE. So ordered.

Mr. DEAL. And thank all of the witnesses who will testify and

members of the subcommittee for their presence. Certainly the

tragedy of 9/11 and the aftermath of that event are going to be

with us for a very long time, and today we simply deal with one

of those manifestations of that aftershock.

4

While some would criticize the administration for not having

done enough, in reality, the reaction and the outpouring of Federal

dollars for this event has been unprecedented in American history.

Truly the event itself, however, was unprecedented in American

history, and none of us wish to diminish that.

The question is whether or not we have the information upon to

make good decisions as to where we go from this point forward.

One of the real concerns that I have is in the GAO report. It finds

that much of the information relating to the health effects are unreliable, and the comments that despite the efforts of HHS to require the necessary information that much of that information is

still incomplete. So to those who will testify today who are in a position to make that information available to us and to the administration, I would certainly call upon them to use their best efforts

to do that.

All of us are reminded frequently of this event. In fact, last week

when I was being interviewed by reporter from my local newspaper, in the conversation, he reminded me that he was at Ground

Zero immediately following the event as a part of a voluntary group

from my church who came to assist with the efforts of helping people in their time of need. So our country has reached out. The question is are we now following up on those efforts. And thank you,

Mr. Chairman, for having the hearing so we can make those inquiries here today. I yield back.

Mr. PALLONE. I recognize Mr. Engel who, like the other members

of the New York delegation, has been very much out front on this

issue. Thank you, Eliot.

OPENING STATEMENT OF HON. ELIOT L. ENGEL, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF NEW

YORK

Mr. ENGEL. Thank you, Mr. Chairman. I want to thank you for

holding this hearing. You and I had discussed this several months

ago, and I requested this hearing and said that I thought it would

be a good idea. And you responded very positively then, and I

thank you for the hearing now.

Six years, Mr. Chairman, as you pointed out, have passed since

terrorism struck at the root of our Nation’s soil on September 11,

2001. As devastating as that day was, there are few days I’ve been

more proud to be an American than on 9/11. Now, within minutes

of crashes into the Twin Towers, New York’s first responders mobilized to save those trapped in the World Trade Center. First responders putting themselves in unspeakable danger, and too many

lost their lives that day.

Within days, as you pointed out, Mr. Chairman, over 40,000 responders across the Nation descended upon Ground Zero to do anything possible to help with the rescue, recovery and cleanup. I remember those bittersweet days. I was in New York City when this

happened. I was born and bred there, and remember seeing Americans lined up around blocks to donate blood. I remember the chaos

as no one knew quite what to do, only that they had to do something, anything to help our Nation rise up from assault by the terrorists.

5

And the past 6 years have not been kind to many, so many of

the first responders who put themselves in harm’s way. It is estimated that up to 400,000 people in the World Trade Center area

on 9/11 were exposed to extremely toxic environmental hazards, including asbestos, particulate matter, and smoke. Years later, this

exposure has left a significant number of first responders with severe respiratory ailments including asthma at a rate that is 12

times the normal rate of adult onset asthma.

Also common are mental health problems including PTSD and

depression. This has all been well documented in scientific, peerreviewed published work regarding the long term health effects of

9/11 by Mount Sinai Hospital, the Fire Department of the City of

New York, and the World Trade Center registry. People who have

been exposed are not only first responders but people who live in

the area. And frankly, I think the behavior on the part of the Federal officials borders on the criminality when we in New York were

assured that the air quality was OK and we were assured that we

could go to the World Trade Center area and were assured by

Christine Todd Whitman that we had nothing to fear. That all

turned out to be false.

While these illnesses should sadden all of us, I am frankly outraged that 6 years later our Nation has really failed to provide the

first responders with anything more than a fragmented and unreliable health care monitoring and treatment program that forces

those who fearlessly volunteered for our country to fight within a

myriad of bureaucracy to receive care that should be a given, and

yet it is a struggle.

The nonpartisan Government Accountability Office has criticized

the U.S. Department of Health and Human Services for its failure

to provide consistent availability of services to Federal responders

through the World Trade Center Federal Responder Screening Program. Despite starting in 2003, service stopped between March

2004 and December 2005. It resumed again in March 2006, but

suspended key services between April 2006 and March 2007. It is

truly shameful.

GAO has also noted that those brave volunteers and first responders that came to help New York from other parts of the country have not had regular access to screening and monitoring. After

years of starts and stops, there are only 10 clinics in seven States

where responders can receive services. It is just unconscionable. We

can and must do better. I was proud to join with my New York City

colleagues, lead by Representatives Maloney, Nadler, and Fossella,

who is here with us this morning, and so many others last night

in introducing the 9/11 Health and Compensation Act.

This comprehensive bill would ensure that everyone exposed to

the Ground Zero toxins has a right to be medically monitored. And

all that are sick have a right to treatment. It would also rightfully

provide compensation for loss by reopening the 9/11 Compensation

Fund. No more fragmented health care. No more excuses. We must

and shall do what is right.

In conclusion, let me just say I still feel great sorrow in our remembrance of the tragedy of 9/11 and obviously will never forget

what happened that day. But we must look forward and right the

wrongs our Nation has perpetuated against our own heroes and

6

provide them with the care and compensation they so desperately

need and deserve.

Mr. Chairman, I urge all Americans to pause and reflect on the

tremendous loss of life that day and how so many sacrificed so

much for their fellow Americans and make sure that our future actions are driven by these memories, and also remember that potentially still hundreds of thousands of people are being exposed to

these toxic substances every day. And the Federal Government cannot wish that away. We need to respond, and we need to respond

now. Thank you, Mr. Chairman.

Mr. PALLONE. Thank your, Mr. Engel. Our next opening statement is from Mr. Ferguson. Again we have two New Jersey people

here today, one from each party, and I constantly remind everyone

that we in our State, had a lot of people that died and were seriously wounded, and a lot of first responders as well. And we also

have one of the treatment centers here. One of the witnesses today

is from one of the monitoring treatment centers. So again we obviously are very concerned about this as well, in our State. So, Mr.

Ferguson.

OPENING STATEMENT OF HON. MIKE FERGUSON, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF NEW JERSEY

Mr. FERGUSON. Thank you, Mr. Chairman. Thank you very much

for holding this meeting. I want to thank Mr. Deal as well and

member of the subcommittee and certainly the witnesses for being

here today to address this very important issue regarding medical

monitoring and treatment of September 11, 2001 health effects on

residents and first responders.

Addressing this issue is long overdue, and I am glad that we are

giving it attention that it really does deserve. And the more that

time goes by, the more we are learning about the after effects and

the health effects of those who selflessly went to attend to this disaster. I am sure that we are going to be able to gain some valuable

information from treatments and health effects from some of our

witnesses today. I am pleased that we are having this hearing, and

my hope is that the subcommittee will be able to use some of this

information to help address some of the needs of the families who

are suffering.

In addition, we need to find out what went wrong with some of

the information and some of the air quality information surrounding lower Manhattan and why better information wasn’t made

available in a more timely way. Of course, as the chairman referenced, this issue hits very close to home for many of us on the

subcommittee. I know Mr. Fossella is here as well.

In our district, we lost 81 people on the attacks of September 11,

2001. And to save others, approximately 40,000 first responders answered the call, including many from New Jersey on September 11

and the weeks and months that followed, helping to try and find

survivors. We have firefighters and police officers and construction

workers and utility workers, all folks who were working tirelessly

day and night on the pile in the hopes of finding one more survivor.

These men and women didn’t think twice about running into burning buildings or climbing through rubble to help save the lives of

7

others, and we owe them the very best information that we have

to assist with the health challenges that they are now facing because of those sacrifices.

Dr. David Present, the chief medical officer for New York City’s

fire department has been studying the health effects on firefighters

since September 11, 2001. In a recent interview with Katie Couric,

he said this about the health effects of breathing the air at Ground

Zero. I quote, ‘‘the biggest problem was that it was pulverized

building materials that wind up having a very high alkalinity, almost like lye, all right, or Drano, that when you inhale or swallow

it, it’s burning your entire nose and airway and stomach.’’

In a study that was published in many of the leading medical

journals, Dr. Present concludes that working on the pile for an extended period of time decreased an individual’s lung function by an

average of 12 years. Six years later, those same heroes who risked

their lives need our help. And we have to be there to answer their

call. We need to make every effort to find out what is causing their

illnesses and what can be done to treat them.

There is no reason that with today’s medical technology that we

shouldn’t be able to get some proper treatment to those who made

these sacrifices. In the future, we have to work to ensure that our

first responders are not put in further unnecessary jeopardy than

they are already placing themselves by their own choice. Our first

responders were heroes on September 11, and we owe them our

very best efforts today. Mr. Chairman, I want to thank you again

for holding this hearing. I yield back.

Mr. PALLONE. Thank you. The gentlewoman from Tennessee.

OPENING STATEMENT OF HON. MARSHA BLACKBURN, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF TENNESSEE

Mrs. BLACKBURN. Thank you, Mr. Chairman, and I thank you

and Mr. Deal for holding the hearing. And I also thank our members from both sides of the aisle who have been so involved with

this issue and continuing to keep the pressure on with this issue.

I think that we all know what transpired September 11, and we

know that we have to be very vigilant going forward in how we

protect our Nation and also how we protect those who are going to

respond to any tragedy that we do have.

There are lots of lessons learned, and, as you’ve heard in the

opening statements, there is attention to what should be those lessons learned from members of this panel. And, as my colleague

from New Jersey just stated, you had approximately 400,000 people

that were exposed to the environmental hazards, the asbestos, the

smoke, the particulates, 40,000 first responders that were there on

that day.

Now, there is very little solid, quantifiable data from which we

can operate as we look at the environmental factors and what the

first responders were exposed to during those cleanups. What we

do know is the damage that is there. Its detrimental physical effects, chronic respiratory, gastrointestinal conditions, anxiety, and

other mental health problems. And these have severely impacted

the lives of those that were at Ground Zero.

8

For example, the city health department reports rescue and recovery workers now develop asthma at a rate 12 times that found

in the general population. Among children that were exposed to the

toxins, 53 percent reported breathing problems in the 3 years after

9/11. New York City officials estimate 120,000 workers and volunteers and 550,000 other people may or may eventually need treatment.

And I do commend the State of New York and the U.S. Department of Health and Human Services for establishing 9/11 programs

and resources to treat, track, and provide information about scientific research and services for people who have developed health

problems as a result of the attack.

However, the GAO does state that the Federal Government has

had difficulty ensuring uninterrupted availability of services for our

Ground Zero responders. We have to be certain that Federal and

State bureaucracy does not prevent responders from receiving the

medical treatment and the tracking that is necessary for meeting

the demands of their illnesses.

I look forward to hearing from our witnesses today. I welcome

our witnesses and thank them for their time in preparing the testimony for us. And again, Mr. Chairman, I thank you and the Members who have been so diligent in continuing to keep the pressure

on about the issue, and I yield back.

Mr. PALLONE. Thank you. And then last but not least, the gentleman from New York or Staten Island, again he has been one of

the people, along with the rest of the New York delegation that

continues to bring this to the attention of the subcommittee. I don’t

know, but I would venture to say that probably a lot of those first

responders were from Staten Island. Mr. Fossella.

OPENING STATEMENT OF HON. VITO FOSSELLA, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF NEW

YORK

Mr. FOSSELLA. Well, thank you very much, Mr. Chairman and

Mr. Deal, and thank you for allowing me to participate this morning on this panel. My colleagues, Mr. Ferguson, Mrs. Blackburn. Of

course, Eliot Engel has been a true champion. Indeed, I think in

Staten Island alone, we lost 78 fireman on that day. Twenty-two

percent of all firefighters and more than 240 people were killed,

probably the heaviest toll of any county per capita in the country.

And we still see the effects 6 years later. There is the old saying

that time heals all wounds, and I think in this case, time exposes

more wounds. And I thank you at the outset, Mr. Chairman, for

shedding light on this issue, for ensuring that we never forget

those who not just sacrificed on those days, but who continue to

suffer. And I thank those in Congress and the executive branch for

helping New York to rebuild the city, but I think there’s a fundamental obligation to call upon our Federal Government to help

people rebuild their lives.

And at the outset, let me thank some individuals. I thank the

panel, Mr. Howard. We will also hear from Deputy Mayor Edward

Skyler, who is here on behalf of the mayor, who has truly been a

good partner in helping us get the resources we need and, by extension, the fire department and the police department and Mt. Sinai

9

and all those who are trying to ensure that New York doesn’t

shoulder disproportionately the burden here.

Because we have to remember September 11 wasn’t just a New

York problem or a New York/New Jersey problem. It was an American problem. It was an attack on America, and I think America

has a responsibility to respond in kind.

I would like to thank my colleagues in the New York delegation,

Mr. Nadler, but especially Mrs. Carolyn Maloney who has really

been spearheading these efforts to date. People in the labor community in particular, Dennis Hughes in the AFL/CIO who has

helped us coordinate and shepherd this legislation through.

And I remind everyone that this is why we place so much emphasis on preventing another terrorist attack because one more exorbitant cost of terrorism is the individuals that we continue to

have to help and treat.

Again the message is never forgetting. We know so many successes, but the successes have been measured in small steps rather

than giant leaps as critical needs continue to be unmet after 6

years. We have encountered obstacles along the way, but as mentioned with Congresswoman Maloney, we have restored $125 million. Of that, $75 million was dedicated for treatment, the first ever

Federal dollars to be directed for that purpose. We were able to get

Dr. Howard to help coordinate and oversee the Federal response.

And in addition, as Mr. Pallone mentioned, we included $50 million

for the federally funded 9/11 health clinics in the Labor-HHS appropriations bill.

In addition, as was mentioned by Mr. Engel, we introduced legislation last night that ensures that everyone exposed to the Ground

Zero toxins has a right to be medically monitored, builds on the

Center of Excellence, and expands care to the entire exposed community and provides compensation for loss by reopening the 9/11

Victims’ Compensation Fund.

And for those, Mr. Deal and Mrs. Blackburn, also asked some,

I think, very pointed questions of where is the information, what

do we need? I can tell you, as someone who lives in Staten Island

and sees young guys in particular who used to run a 6-minute mile,

7-minute mile, now have difficulty walking up a flight of steps. I

could point to those individuals with specificity, but the data is just

overwhelming, whether it is from Mt. Sinai or the fire department,

that this is a major problem, a major undertaking that demands

a Federal response. And I think the Federal Government has an

obligation to be at the table with us helping to coordinate, shepherd, and provide for long-term plan for all those who are affected.

With that, Mr. Chairman, I thank you very much for holding this

hearing. I yield back.

Mr. PALLONE. Ranking member, Mr. Barton, for an opening

statement.

OPENING STATEMENT OF HON. JOE BARTON, A

REPRESENTATIVE IN CONGRESS FROM THE STATE OF TEXAS

Mr. BARTON. Thank you, Chairman Pallone. I was downstairs at

the Oversight Subcommittee hearing on monitors for nuclear equipment coming into this country. I appreciate you holding this hearVerDate 11-SEP-98 15:33 Oct 06, 2008 Jkt 000000 PO 00000 Frm 00014 Fmt 6633 Sfmt 6633 Q:\DOCS\110-64 SCOM1 PsN: SCOM1
10

ing today. I appreciate my colleagues on both sides of the aisle

from New York being involved with it.

Before I talk about the specific hearing, I think it would be appropriate that we all contemplate our dear colleague Paul Gillmor

who passed away several weeks ago. Paul was a distinguished

member of this committee, and was chairman of the Environment

and Hazardous Material Subcommittee in the last Congress. He

took a leave of absence from the committee this Congress so that

some of the more junior members of the minority side wouldn’t

have to be bumped off of the committee. So we are going to miss

him, and we wish the best to his family in their time of sorrow.

As far as the hearing today, I think it is important. We know

what happened on 9/11/2001. Firefighters, police officers, ambulance crews, and all of the other first responders were exposed to

health hazards because of the attacks on 9/11.

Federal funding has been provided to Government agencies and

to private organizations to screen and monitor responders for illnesses caused by that catastrophe. This hearing is going to provide

some oversight for those programs. Many who responded to the disaster and then needed help themselves have been beneficiaries of

various worker compensation, health insurance, and other Government coverage.

Some say that what has been done is not enough. I don’t really

know where to draw the line. I don’t know whether the entities

that are legally obligated to provide or pay for health care monitoring or treatment have done all that they could to help the victims

of 9/11.

I know that we have appropriated Federal money and that we

will continue to do so. I know that Federal dollars have been spent

for the responders who responded on 9/11. Again I’m not sure exactly the effectiveness of those programs and the legality of some

of those programs and what needs to be done. So I look forward

to the hearing.

Before I yield back, Mr. Chairman, I do think that, since this is

the Health Subcommittee, we should mention something that has

yet to be done, and that is a reauthorization of our S-CHIP program. Members on both sides of the aisle realize the importance of

S-CHIP. I am introducing a bill today to authorize a clean bill at

existing levels with a slight increase for inflation until we can work

out the details of a new S-CHIP program. I would hope that my

friends on the majority side would join us in reauthorizing for a

short term the existing S-CHIP program because, as we all know,

if we don’t do something in the next 2 weeks, the program legally

expires on September 30, the end of this month.

So while we wrangle over the details of any new improvements

or expansions in the program, if any, we at least ought to keep the

existing program going. And I would hope that we could move that

extension fairly quickly while we tackle the bigger issue.

If the Democratic leadership in the House wants to accept the

Senate bill, I do hope that this subcommittee would hold a hearing

on that bill, a legislative hearing, where it would be open. We could

look at the details and then have a markup subsequent to that so

that we could actually make some changes in the bill before it went

to the floor.

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With that, Mr. Chairman, I yield back.

Mr. PALLONE. Thank you, Mr. Barton. I appreciate your ongoing

interest in S-CHIP, and I am about S-CHIP-ped out today. So I am

not going to comment any further. The gentleman from Arizona.

OPENING STATEMENT OF HON. JOHN B. SHADEGG, A REPRESENTATIVE IN CONGRESS FROM THE STATE OF ARIZONA

Mr. SHADEGG. Thank you, Mr. Chairman, and with your permission, I will insert my written statement in the record. I simply

want to make some brief comments which may be a little bit different than others have made. I want to commend you for holding

this hearing.

And I want to recognize that, while the focus today is the technical issue of the care, treatment, and monitoring of the first responders who have been victimized, I think it is important to remind everyone at the dais and in the audience and elsewhere that

we are talking about the victims of a vicious attack on America by

radical Islamists who seek to kill us and who are out there and

who want to keep going in their efforts who make their designs

clear every day.

That the people who are suffering—we all kind of internalize the

numbers of those who were killed that day, and then we can extrapolate from that all the families that were affected by that attack. But as my colleague from New York Mr. Fossella pointed out

we don’t really know the number of victims. The issue we are looking at today demonstrates there are more victims being manifest

every day by this attack on America.

And I think it is important for those watching this hearing who

are considering this effort to recognize that this is not a health

problem, though it is a Health Subcommittee. This is the Nation’s

response to an attack by its enemies. And we can all be critical and

say we should have responded this way or that way, or we should

not have responded this way or that way.

But at a minimum, I would hope that we can all come to agreement that when this Nation is attacked and there are people who

suffer, whether it is the loss of life and the impact on the families,

or whether it is ongoing health problems that manifest themselves

months later or years later, that is something we need to be concerned about as a nation. That is a cost of failing to do what is necessary to defend ourselves. And we have an obligation to each of

the people who are suffering as a result of those attacks today because that is a part of our national defense. That is a part of us

standing together as a nation.

I will just conclude by pointing out when the 9/11 attacks occurred, my daughter was in college. She now works on the Senate

side, and I talked to her a few days after the event. And she said

that she and many of her friends in college were going down to the

local blood bank to donate blood for the victims. That is the spirit

that we had as a nation when the attacks occurred. That is the

spirit we should have or try to have as a nation in responding or

figuring out the best way to respond to those who hate us and want

to kill us. And that is certainly the spirit we should bring to this

hearing and to doing the right thing by the people who are being

victimized by this attack now years later.

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And with that, I yield.

Mr. PALLONE. Thank you. Thank you for those remarks. We are

done now with our opening statements, and any other statements

will be accepted for the record at this time.

[The prepared statements follow:]

PREPARED STATEMENT OF HON. JOHN D. DINGELL, A REPRESENTATIVE IN CONGRESS

FROM THE STATE OF MICHIGAN

Mr. Chairman, thank you for holding this important hearing today. I also want

to thank the witnesses who are here to discuss the health effects of the World Trade

Center collapse on first responders and workers.

One week ago marked the sixth anniversary of the attacks against our Nation.

Nearly 3,000 people perished as a result of the attacks, and many who participated

in the clean up, rescue, and recovery efforts continue to suffer from lingering physical and mental health problems directly linked to their work in downtown New

York City. While Congress has taken some initial actions to deal with this issue,

adequate screening, treatment, and monitoring services for all of those brave men

and women throughout the Nation who came to New York to work in the cleanup

has been lacking.

It is incumbent on our Nation not to forget these responders who placed their own

well-being aside to help others. The administration’s fiscal year 2008 budget request

of $25 million for the current World Trade Center responder programs fell far short

of the amount appropriated in either 2006 or 2007. Over the long term, we must

find a way to care for our heroes who answered the call and subsequently suffered

severe health problems. In the short term, we must provide enough Federal resources to sustain the current monitoring, screening, and treatment programs in

New York.

I would note with particular concern the intermittent services provided by the

World Trade Center Federal Responder Screening Program. The program, now run

by the Federal Occupational Health Services, provides Federal responders to the attacks with screening and referrals to health clinics. However, the program suspended examinations from March 2004 to December 2005, and again from January

2007 to March 2007. This program encompasses Federal employees all across the

country that came to New York in response to the attacks. As new health 9/11 effects continue to emerge from latent conditions, it is especially important that all

Federal employees who were exposed to the environmental hazards resulting from

the WTC collapse be screened for problems.

Another area of concern is the failure to screen and monitor those non-Federal

workers who reside outside of New York City. While the National Institute for Occupational Safety and Health has made two separate attempts to contract with entities to provide service across the country, only a very limited number of places in

the country have services.

It is imperative that as Congress continues to work on these issues, we not forget

the service our first responders and workers provided in those dark days following

September 11.

I want to thank Chairman Pallone for holding this important hearing, and I look

forward to receiving the testimony from our witnesses.

PREPARED STATEMENT OF HON. HENRY A. WAXMAN, A REPRESENTATIVE IN CONGRESS

FROM THE STATE OF CALIFORNIA

Mr. Chairman, thank you for holding this important hearing today.

Last week the Nation marked the sixth anniversary of the terrorist attacks of

September 11. As a nation, we mourned all those people who lost their lives on that

day in the attacks on the World Trade Center and the Pentagon, and the passengers

who died on United Airlines flight 93 in Shanksville, Pennsylvania.

But we also remember those people who continue to suffer from the attack on the

World Trade Center—the men and women from all over the country who came to

lower Manhattan to help clear the debris and to rebuild the site. Last week, Chairman Towns, chairman of the Subcommittee on Government Management, Organization, and Procurement of the Oversight Committee, held his third hearing on the

impact of 9/11 on New York residents and first responders. We have also had a

number of hearings over the years in the National Security Subcommittee of the

Oversight Committee on the health effects of the 9/11 attacks.

13

We know from these hearings that Congress needs to craft a long-term solution

to the problem of how we will identify, treat, and compensate those people who are

suffering from 9/11-related illnesses. The current patchwork approach is clearly inadequate. That is why I am pleased that we are having a hearing today in this subcommittee. This is the subcommittee with legislative jurisdiction over the care of the

first responders and others who continue to suffer because of the 9/11 attacks. The

involvement of this subcommittee is critical to moving forward on this important

issue.

I would like to commend my colleagues from New York, Representatives Maloney,

Nadler, Fossella, who have worked together, across party lines, to develop a comprehensive approach to monitoring, treating, and compensating people who were exposed to the to the potentially toxic effects of the World Trade Center site. I look

forward to working with these members and this subcommittee to make sure that

all of the 9/11 victims are taken care of.

I thank the witnesses for coming today.

PREPARED STATEMENT OF HON. ANNA G. ESHOO, A REPRESENTATIVE IN CONGRESS

FROM THE STATE OF CALIFORNIA

Chairman Pallone, thank you for holding today’s hearing on the Federal response

to the health problems faced by first responders, construction workers, residents,

and others living and working at or near the World Trade Center site following the

September 11, 2001 attacks on our country.

In the haste to respond to the destruction of the World Trade Center buildings,

the impact on public health was underestimated and diminished.

In the early days after the attacks, the Federal Government failed to provide the

public with sufficient warnings about potential risks. After the collapse of the two

World Trade Center towers, the EPA told the public in a September 18, 2001 announcement that the air was ‘‘safe’’ to breathe. The EPA Inspector General later

concluded in an August 2003 report that ‘‘[EPA] did not have sufficient data and

analyses to make such a blanket statement.’’ The IG report also said, ‘‘The White

House Council on Environmental Quality influenced, through the collaborative process, the information that EPA communicated to the public through its early press

releases when it convinced EPA to add reassuring statements and delete cautionary

ones.’’

Regrettably, as the GAO has reported, there have been additional missteps in the

operation of federally-supported programs that monitor 9/11 related health problems

and treat victims.

In one case, a screening program was suspended for 5 months earlier this year

when there was a change in the agency overseeing the WTC Federal Responder

Screening Program. Diagnostic services under the same program were suspended for

11 months because of a contracting problem.

Finally, the GAO notes that affected individuals living outside the New York metropolitan area have found it difficult if not impossible to participate in screening

and monitoring programs due to a lack of nearby providers participating in the program. Getting treatment has been even more challenging.

Although my congressional district is 3,000 miles away from Ground Zero, this aspect of the public health aftermath of the 9/11 attacks has affected some of my constituents.

The Urban Search and Rescue (USAR) team based in Menlo Park, California, was

one of many to respond in the days after September 11th. Although members of the

team were in New York for a relatively short time compared to others who worked

on ‘‘the Pile’’ some have experienced respiratory and other ailments in the ensuing

years.

For my constituents and for other first responders from the around the country

who answered the call after 9/11, I believe we need a new comprehensive framework

that provides the screening and the treatment they deserve, similar to the legislation that my colleagues Representatives Maloney, Nadler, and Fossella have recently introduced.

Today, we’ll hear from the witnesses who are attempting to address the health

issues that have emerged after 9/11. I look forward to hearing their thoughts on getting the services and care to those who need and deserve them.

Thank you, Mr. Chairman.

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PREPARED STATEMENT OF HON. JIM MATHESON, A REPRESENTATIVE IN CONGRESS

FROM THE STATE OF UTAH

Thank you, Chairman Pallone and Ranking Member Deal.

As many have noted, our world changed forever 6 years ago, when our Nation was

attacked. Thousands of innocent people died and our national security was shaken

to the core. We will never forget those who lost their lives in New York, at the Pentagon, and on a Pennsylvania field. We will never forget the heroes—the first responders—who rushed to Ground Zero with no thought but to help with the recovery. In my State of Utah, the Salt Lake Urban Search and Rescue Team—also

called Utah Task Force One—sent 62 people to New York City on September 18,

2001, to comb through the rubble of the World Trade Center. The team included

specialized firefighters, search dogs and handlers, two physicians and several structural engineers. The Salt Lake City and Salt Lake County Fire Departments contributed, as well as the Rocky Mountain Rescue Dog organization. The Utah task

force is one of 28 teams that participate in the national Urban Search and Rescue

Response System. It’s impossible to honor the victims of 9/11 without also making

a commitment to our first responders who run toward danger while others try to

escape it.

Since the attacks, many rescue workers have reported an increase in illness as

a result of exposure to toxic materials and debris, during their hours on the pile,

amid the dust and soot. Many agency officials will provide testimony here today,

confirming that we need to continue to examine the health exposure and work to

make available physical and mental health screening programs, which should be

available to all exposed first responders.

I also believe that Congress should continue to support critical programs that improve access to emergency medical care. For my part, I have introduced legislation

to reauthorize the Emergency Medical Services for Children (EMSC) Program. This

program is designed to improve emergency medical services for our children. For

more than 20 years, the EMSC program has improved emergency care facilities that

treat sick and injured children across this country. Through grants to States and

to accredited medical schools, the EMSC program has driven ‘‘best practices’’ in the

care provided to kids every day at the scene of an accident, en route to the hospital

and in the E.R. and other critical care facilities. These efforts also translate into better care for children when natural or manmade disasters strike. When disaster

strikes, we all want the best care possible for these small patients—I am working

to preserve this program dedicated to improving emergency medical care for our

children.

I look forward to the testimony today and with that, I yield back my time.

Thank you Mr. Chairman.

Mr. PALLONE. We will now turn to our witnesses, and the first

panel has one person, Dr. Howard. First of all, welcome. Dr. Howard is the director of the National Institute for Occupational Safety

and Health with the U.S. Department of Health and Human Services. Let me mention that you may, in my discretion, submit additional brief and pertinent statements in writing for inclusion in the

record after your comments. And I welcome you, and if you will

begin your statement. Thank you, Doctor.

STATEMENT OF JOHN HOWARD, M.D., DIRECTOR, NATIONAL

INSTITUTE FOR OCCUPATIONAL SAFETY AND HEALTH, DEPARTMENT OF HEALTH AND HUMAN SERVICES

Dr. HOWARD. Good morning, Mr. Chairman, and members of the

subcommittee, and Mr. Fossella. I am pleased to report on the

progress that has been made in addressing the health needs of

World Trade Center responders and volunteers.

In 2002, the Department first funded medical screening for

World Trade Center responders and volunteers. By 2004, medical

evidence showed that periodic medical monitoring was indicated,

and a monitoring program was added. In late 2006, treatment servVerDate 11-SEP-98 15:33 Oct 06, 2008 Jkt 000000 PO 00000 Frm 00019 Fmt 6633 Sfmt 6633 Q:\DOCS\110-64 SCOM1 PsN: SCOM1
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ices were added because a significant portion of the responders and

volunteers were experiencing physical and mental health problems.

Both monitoring and treatment services are provided to those responders and volunteers in the New York City/New Jersey metropolitan area by Centers of Clinical Excellence at a consortium of

five medical centers in New York and New Jersey, coordinated by

the Mount Sinai School of Medicine, and at a clinic center at the

fire department of New York City.

These clinical centers have enrolled over 36,000 responders and

volunteers in medical monitoring and have referred more than

7,600 of those responders for treatment of physical health ailments

and nearly 5,000 for referral for mental health conditions. Even

today, World Trade Center responders and volunteers are still coming forward to enroll in the federally funded monitoring and treatment program.

In addition, over, 1,300 current Federal workers who responded

have been medically screened by the Department’s Federal Occupational Health. And 700 nationwide responders have received an initial monitoring examination by contractors of the Mount Sinai Data

Coordination Center. Just over 400 nationwide responders have received medical diagnosis and/or treatment from the Association of

Occupational and Environmental Clinics supported by generous

and continuing funding from the American Red Cross.

Finally, in collaboration with the New York City Department of

Health and Mental Hygiene, the Department of Health and Human

Services funds the World Trade Center health registry. The registry tracks the health of 71,000 responders, residents, office workers, students, and school staff, passersby, those in the area of the

World Trade Center on September 11, 2001. The registry’s findings

provide an important picture of the long-term consequences of September 11 on the health of not only those who responded and volunteered, but also on those living and working around the World

Trade Center site.

Thank you, Mr. Chairman. I would be pleased to answer any of

your questions.

[The prepared statement of Dr. Howard follows:]

STATEMENT OF JOHN HOWARD, M.D., M.P.H.

Good morning, Chairman Pallone and other distinguished members of the subcommittee. My name is John Howard, and I am the Director of the National Institute for Occupational Safety and Health (NIOSH), which is part of the Centers for

Disease Control and Prevention (CDC) within the Department of Health and

Human Services (HHS). CDC’s mission is to promote health and quality of life by

preventing and controlling disease, injury and disability. NIOSH is a research institute within CDC that is responsible for conducting research and making recommendations to identify and prevent work-related illness and injury.

Mr. Chairman, I would like to express my appreciation to you and to the members

of the subcommittee for holding this hearing and for your support of our efforts to

assist those who were affected by 9/11. I am pleased to appear before you today to

report on the progress we have made in addressing the health needs of those who

served in the response effort after the World Trade Center (WTC) attack on 9/11

and those in the affected communities.

Since February 2006, I have served as the HHS WTC Programs Coordinator. Secretary of Health and Human Services Michael O. Leavitt determined that there was

a ‘‘critical need to ensure that programs addressing the health of WTC responders

and nearby residents are well-coordinated,’’ and charged me with this important

task. Since receiving this assignment I have traveled to New York City (NYC) and

16

Albany, New York, to assess the status of the existing HHS programs addressing

WTC health effects, and meet with those we serve. Participating in these dialogues

has enabled me to better understand the needs of those affected, and the steps we

can take to meet those needs. As the HHS WTC Programs Coordinator I work to

coordinate the existing programs and ensure scientific reporting to provide a better

understanding of the health effects arising from the WTC attack. Today, I will focus

my remarks on the progress we’ve made toward these tasks.

WTC RESPONDER HEALTH PROGRAM—MONITORING AND TREATMENT

Since 2002, agencies and offices within HHS have been dedicated to tracking and

screening WTC rescue, recovery and clean up workers and volunteers (responders).

In 2004, NIOSH established the national WTC Worker and Volunteer Medical

Monitoring Program to continue baseline screening (initiated in 2002), and provide

long-term medical monitoring for WTC responders. In fiscal year 2006, Congress appropriated $75 million to CDC to further support existing HHS WTC programs and

provide screening, monitoring and medical treatment for responders. Since these

funds were appropriated, NIOSH has established a coordinated WTC Responder

Health Program to provide annual screenings, as well as diagnosis and treatment

for WTC-related conditions (e.g. aerodigestive, musculoskeletal, and mental health)

identified during monitoring exams. The WTC Responder Health Program consists

of a consortium of clinical centers and data and coordination centers that provide

patient tracking, standardized clinical and mental health screening, treatment, and

patient data management.

To date, the WTC Responder Health Program has screened approximately 36,000

responders. The New York City Fire Department (FDNY) manages the clinical center that serves FDNY firefighters who worked at Ground Zero. As of July 31, 2007,

FDNY had conducted 29,203 screenings, including 14,429 initial examinations and

14,774 follow-up examinations. The Mt. Sinai School of Medicine’s Center for Occupational and Environmental Medicine coordinates a consortium of clinics that serve

other response workers and volunteers who were active in the WTC rescue and recovery efforts. These clinics have conducted 21,088 initial examinations and 9,101

follow up examinations. Of the 36,000 responders in the WTC Responder Health

Program, 7,603 have received treatment for aerodigestive conditions, such as asthma, interstitial lung disease, chronic cough, and gastro-esophageal reflux, and 4,868

have been treated for mental health conditions.

In conjunction with these activities, CDC-NIOSH has funded the NYC Police

Foundation’s Project COPE and the Police Organization Providing Peer Assistance

to continue providing mental health services to the police responder population. The

availability of treatment for both physical and mental WTC-related health conditions has encouraged more responders to enroll and continue participating in the

WTC Responder Health Program, which will enable us to better understand and

treat the long-term effects of their WTC exposures.

WTC FEDERAL RESPONDER SCREENING PROGRAM

In fiscal year 2002, the HHS Office of Public Health Emergency Preparedness

(OPHEP)—which is now the Office of the Assistant Secretary for Preparedness and

Response (ASPR)—received $3.74 million through the Federal Emergency Management Agency (FEMA) to establish the WTC Federal Responder Screening Program

to provide medical screening for all Federal employees who were involved in the rescue, recovery or clean up efforts. Current Federal employees in this program are

screened by the HHS Federal Occupational Health (FOH), a service unit within

HHS. FOH has clinics located in areas where large numbers of workers are employed. As of August 31, 2007, FOH had screened 1,331 Federal responders. In February 2006, CDC-NIOSH and OPHEP (now ASPR) signed a Memorandum of Understanding to monitor former Federal workers via the WTC Responder Health Program. Since then, former Federal workers have been enrolled in the WTC Responder

Health Program and served by the Mt. Sinai Data and Coordination Center and national clinic partners.

NATIONWIDE SCOPE

HHS is working with its partners to ensure that the benefits of all federally-funded programs are available to all responders, across the nation. Those responders

who selflessly came to the rescue of NYC from throughout the country at the time

of the WTC disaster should receive the same high quality monitoring and treatment

as those who reside in the NYC Metropolitan Area. Enrollees in the WTC Responder

Health Program who are not located in the NYC Metropolitan Area, receive monVerDate 11-SEP-98 15:33 Oct 06, 2008 Jkt 000000 PO 00000 Frm 00021 Fmt 6633 Sfmt 6633 Q:\DOCS\110-64 SCOM1 PsN: SCOM1
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itoring and treatment via a national network of clinics managed by QTC, Inc. and

the Association of Occupational and Environmental Clinics (AOEC), respectively. To

date, 698 responders outside of the NY Metropolitan Area have been screened by

the WTC Responder Health Program.

Achieving such nationwide coverage for WTC responders is challenging; however,

we are committed to serving all responders, regardless of their location or employment status. I am actively working with the medical directors of the WTC Health

Program, the WTC Federal Responder Screening Program, QTC, Inc. and the AOEC

to ensure that the services available to responders are uniform across programs.

WTC HEALTH REGISTRY

In addition to the WTC Responder Health Program, the Agency for Toxic Substances and Disease Registry (ATSDR) maintains the World Trade Center Health

Registry. In 2003, ATSDR, in collaboration with the New York City Department of

Health and Mental Hygiene (NYCDOHMH), established the WTC Health Registry

to identify and track the long-term health effects of tens of thousands of residents,

school children and workers (located in the vicinity of the WTC collapse, as well as

those participating in the response effort) who were the most directly exposed to

smoke, dust, and debris resulting from the WTC collapse.

WTC Health Registry registrants will be interviewed periodically through the use

of a comprehensive and confidential health survey to assess their physical and mental health. At the conclusion of baseline data collection in November 2004, 71,437

interviews had been completed, establishing the WTC Health Registry as the largest

health registry of its kind in the United States. The NYCDOHMH launched the

WTC Follow-up survey in November, 2006. As of August 31, 2007, 39,703 adult

paper and web surveys had been completed for nearly 60 percent response rate (58.7

percent). NYCDOHMH has begun a third phase of the follow-up survey to reach the

registrants through direct interviewing by telephone, as well as initiated a separate

mailed survey of registrants who are younger than 18 (approximately 2,200).

The WTC Health Registry findings provide an important picture of the long-term

health consequences of the events of September 11th. Registry data are used to

identify trends in physical or mental health resulting from the exposure of nearby

residents, school children and workers to WTC dust, smoke and debris. Two journal

articles recently published reported findings on 9/11 related asthma and

posttraumatic stress disorder (PTSD) (Environmental Health Perspectives, 8/27/

2007; and American Journal of Psychiatry, 2007; 164:1385–1394) among rescue and

recovery workers. Newly diagnosed asthma after 9/11 was reported by 926 (3.1 percent) workers, a rate that is 12 times the norm among adults. Similarly, the overall

prevalence of PTSD among rescue and recovery workers enrolled on the WTCHR

was 12.4 percent, a rate four times that of the general U.S. population. By spotting

such trends among participants, we can provide valuable guidance to alert Registry

participants and caregivers on what potential health effects might be associated

with their exposures.

The WTC Health Registry also serves as a resource for future investigations, including epidemiological, population specific, and other research studies, concerning

the health consequences of exposed persons. These studies can assist those working

in disaster planning who are proposing monitoring and treatment programs by focusing their attention on the adverse health effects of airborne exposures and the

short- and long-term needs of those who are exposed. The findings will permit us

to develop and disseminate important prevention and public policy information for

use in the unfortunate event of future disasters.

FUNDING

I want to reaffirm the Department’s commitment to work with the Congress to

provide compassionate and appropriate help to responders affected by the World

Trade Center exposures following the attacks.

As you know, the Department of Defense, Emergency Supplemental Appropriations to Address Hurricanes in the Gulf of Mexico, and Pandemic Influenza Act of

2006 (P.L. 109–148) provide $75 million for the treatment, screening, and monitoring of the responders. With less than one month remaining in the fiscal year (FY)

we are confident this funding will last at least until the end of fiscal year 2007.

The President’s fiscal year 2008 budget requests $25 million for World Trade Center responders and in May 2007, the President signed the U.S. Troop Readiness,

Veterans’ Care, Katrina Recovery, and Iraq Accountability Appropriations Act of

2007 (P.L. 110–128), which included an additional $50 million to support continued

treatment and monitoring for World Trade Center responders. This funding will be

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awarded, as needed, to support continued monitoring, care, and treatment of responders through fiscal year 2008.

From July 1, 2006, through June 30, 2007, the Federal grantees have reported

to NIOSH spending approximately $15 million total for treatment for World Trade

Center related illnesses. This includes $6 million from American Red Cross funds

and $9 million from the $42 million total Federal grants awarded in October 2006.

Of this $9 million, the grantees have actually ‘‘drawn down’’ only $2 million in payments on the Federal grants.

Over $90 million in appropriated funds remains available—including the balance

of the treatment funds appropriated in fiscal year 2006 and the $50 million appropriated in fiscal year 2007—before adding the $25 million included in the President’s fiscal year 2008 budget request. HHS is gathering additional financial data

from the Federal grantees in order to better understand the healthcare cost issues

of the responders. Additional data will help inform our policies, ensure that the current program operates efficiently and effectively, and maximize the available resources to meet responders’ medical needs. HHS will continue to monitor the work

of the grantees as part of the fiscal year 2009 budget process.

Since 9/11, HHS has worked diligently with our partners to best serve those who

served their country, as well as those in nearby communities affected by the tragic

attack. We have had great success in expanding our monitoring program to include

treatment, which has encouraged more responders to enroll and receive needed services. We will continue to forge ahead in providing coordinated medical monitoring

and treatment services, supported by the recent $50 million appropriation. Likewise,

the WTC Health Registry continues to paint a picture of the overall health consequences of 9/11, including the effects experienced by the residents, school children

and office workers located in the vicinity of the WTC. While we have made much

progress, we must continue to gather and analyze data that will enable us to better

understand the health effects we have observed so that we may better treat those

affected. I appreciate your support of our efforts and look forward to working with

you in the future as we continue to serve this deserving population.

Thank you for the opportunity to testify. I would be happy to answer any questions you may have.

Mr. PALLONE. Thank you, Dr. Howard. I am going to recognize

myself for some questions.

You are familiar with the letters that myself and the New York

delegation have sent to both Secretary Leavitt and Office of Management and Budget? Have you seen those?

Dr. HOWARD. I think I have seen letters to the Department. I am

not sure I have seen those you——

Mr. PALLONE. OK. Well, I mean essentially if I could summarize

the concern, I mean the concern is that the administration had

promised a comprehensive plan to deal with this. As you know, the

New York delegation has submitted legislation which, I guess,

could be intended to put together a comprehensive plan. But we

were supposed to get something like that from the administration.

We continue to be concerned about the level of budget requests

that come from OMB, so we sent a letter to OMB. And the concern

I have, and I guess the criticism is that the administration would

appear to be dragging their feet. We don’t have a comprehensive

plan.

We have budget requests that seem to be inadequate. I did get

a draft, I guess, that I mentioned in my opening statement that

has the figure, that the current cost estimate for the program is

nearly $200 million per year. And yet there is an acknowledgement

in the draft that it could cost as much as $712 million annually.

And yet the President’s budget for fiscal year 2008 request is only

$25 million. And I know that one of the administrators for this

task force resigned, and no new person has been appointed.

19

So I guess the question would be, one, what is happening with

this comprehensive plan? Are we still getting it? Is it being held

up because you don’t have a person to replace the person who was

the chair of the task force? And when are we going to get some real

cost estimates because I think you would agree that the $25 million

wasn’t adequate.

Dr. HOWARD. Mr. Chairman, let me start with the beginning of

that list of questions. I think all of them are extremely important.

I don’t think there should be any doubt in anyone’s mind that Secretary Leavitt of the Department of Health and Human Services is

dedicated to this program and ensuring that these individuals who

are being monitored and treated are not abandoned. That will not

happen on his watch.

I think one of the more serious issues with regard to developing

a comprehensive plan, a multi-year plan, as opposed to a day-today operational plan, which we do in NIOSH every day with the

grantees.

The biggest problem with that, I think, from the point of view,

not being a budget accountant et cetera, is being able to project

over time what the true costs are. Right now on the monitoring

side, it is very easy to do. We know that it costs $1,150 to monitor

an individual. You tell me the number of individuals you want

monitored. We do the math, and it comes out. Right now, we have

37,000 under monitoring, $1,150 per year. That’s about a figure of

$43 million. Easy to figure out. March that out to how many years

you want.

On the treatment side, that is the real conundrum. We put out

the money for the treatment services in October 2006. It took a few

months for the grantees to get capacity up and running. Probably

around February or March, the grantees really started treating individuals. So we have a very limited amount of time right now to

assess from an actuarial sense the costs of treatment because each

individual is generating different costs, and there are different

costs associated with treating physical health effects and mental

health effects.

So that is an extremely unstable number, and I think again from

my point as a physician—I am not a professional in this area—but

I think it challenges people who are looking at projecting costs

through the years.

Mr. PALLONE. I only have 5 minutes even though I am the chairman. I just really want to know you are agreeing with me that

there is a problem. The GAO report, that is the next panel, they

agree that there is a problem. But I just want an answer to simple

questions. Is the administration still going to give us a comprehensive plan so we don’t just have to operate ad hoc? When? Is there

a problem because there is nobody in charge of this anymore because the person resigned? And I mean just answer that. Are we

going to get a comprehensive plan, yes or no?

Dr. HOWARD. I would like to answer all three. Yes.

Mr. PALLONE. OK, when?

Dr. HOWARD. We are developing comprehensive plans.

Mr. PALLONE. Can we have a date?

Dr. HOWARD. The task force that Dr. Agwunobi reported to the

Secretary in April. The conundrum, I think, we have, which I think

20

has to be recognized is that we don’t have solid cost estimates to

do a comprehensive long-term plan at this point in time.

Mr. PALLONE. But can you give me an approximate date?

Dr. HOWARD. In October at the end of this grant period for the

treatment program, we will have exact numbers from the grantees

about what they have spent in this first grant year. That will be

extremely helpful for a comprehensive plan.

Mr. PALLONE. So can we get this comprehensive, in the next few

months?

Dr. HOWARD. Well, that I will take back to the——

Mr. PALLONE. Yes, I would like to have it, if possible, right after

October 1. And then is there going to be a new person appointed

to head this task force?

Dr. HOWARD. The Secretary at this time—I am co-chair of that

task force, so I am stepping in from the day-to-day operational

standpoint to be able to fill that role.

Mr. PALLONE. So you don’t know then?

Dr. HOWARD. The Secretary will designate a chair at some point.

Mr. PALLONE. All right, well why don’t you take it back to him

that we would like that person sooner rather than later?

Dr. HOWARD. Yes, sir.

Mr. PALLONE. OK. Mr. Deal.

Mr. DEAL. Thank you. Dr. Howard, talking about the treatment

side of the issue and whether or not appropriate funds are available, just looking at your written testimony, I believe there is like

$90 million in appropriated funds that remain available, including

the balance of the treatment funds appropriated in the fiscal year

2006 and $50 million appropriated in fiscal year 2007, and that is

before adding the $25 million that was included in the President’s

fiscal year 2008 budget. I assume that is correct since it is in your

testimony?

Dr. HOWARD. Those numbers are generally correct. The $90 million, because we have monies for monitoring, and then we have

monies for treatment. So the $90 million is on the monitoring side,

which was appropriated in 2003. The fifth year of that is coming

up in fiscal year 2008. Otherwise, the numbers are perfectly correct.

Mr. DEAL. OK, so there is money that has already been appropriated that is not currently been expended. But the projection is

it will be expended over the next several years?

Dr. HOWARD. There is no doubt in my mind that medical treatment will be expend all the money that we have. The issue is the

timing. As I mentioned to the chairman, we are looking at right

now at the end of this fiscal year, September 30, we are looking

at the certainty that we will have enough money to fund monitoring and treatment fully for anyone who needs it as of the end of

this fiscal year.

When we look to that fiscal year 2008, which I think is where

you are looking, looking at approximately maybe $24 or $25 million

carried over from fiscal year 2007, plus the $50 million that the

Congress generously appropriated us in the Iraq supplemental. So

that is nearly $75 million. That is not counting the money that is

currently in consideration by the Congress, which I think on the

House side was $50 million.

21

So we are entering fiscal year 2008 with funds, and again we will

continue to monitor this very closely. The Department keeps a very

close eye on this because, as I said, the Secretary’s intention is that

these patients are not abandoned. They do not run out of money.

The programs will continue.

Mr. DEAL. Now, as I understand it, most of the money and the

programs that you put in place go to grantees to carry out various

functions of the overall picture. Is that correct?

Dr. HOWARD. Yes, sir.

Mr. DEAL. And one of the criticisms that apparently GAO has

made is the lack of documentation. Do you depend on those grantees to furnish the numbers and the documentation to you? Is that

part of the grant function?

Dr. HOWARD. Yes, sir. A grant is an unusual vehicle, and it is

money given to grantees. They decide how to spend it. There are

some deliverables that are attached, but the data really depends on

the good working relationship between the funder, the Federal

Government, and the grantee. It is not exactly like a contract,

which is a little tighter deliverable.

Mr. DEAL. And in order to make projections for future needs, it

would seem that you would need the kind of demographics and the

data that the grantees presumably would have access to, but it appears in the GAO report that maybe that information is not being

funneled back up through the system.

Dr. HOWARD. No, I would say the grantees are bending over

backwards to provide us with as much data at any time we ask.

The issue is that within large hospital medical centers, it is not so

easy to get actual cost accounting data from systems in any health

care system. So you are talking about five large medical centers in

the New York/New Jersey area. So our grantee, which is providing

the services, must access large systems to be able to do that.

And as you know and we all know, sometimes health billing isn’t

in real time. So there may be some lag, if you will, in getting that

data. So we are working on setting up alternative systems so that

we are able to set data in real time. Because that is the question,

as the chairman asked, as my Department asked, as others in Congress asked. What is your cost estimate? We want to know that

with some certainty.

Mr. DEAL. But it appears though that the effort to determine

who is out there and who has needs as a result of this event of 9/

11, the screening process is the largest search screening process

that has ever happened in the history of this country in terms of

outreach, is it not?

Dr. HOWARD. Exactly right. We have never undertaken, to my

knowledge, in the Federal Government this kind of process, either

on a registry side with 71,000 registrants that the city is doing for

us, or on the clinical side, the monitoring and treatment. We have

never run this kind of system.

And if I could add, sir, the 40,000 figure that is often quoted, an

early figure in 2001 and 2002 for the denominator of responders

and volunteers, is often used. But as you see, we are nearly up to

that 40,000 figure in registered, enrolled responders and volunteers

right now.

22

It gives us some pause that that may not be the accurate total

denominator. And in fact, the city Department of Health, utilizing

estimation method with Research Triangle Institute in North Carolina has a number, an estimated number, mathematically estimated, but around 90,000.

So somewhere between this 40,000 of enrolled individuals that

we have now in our program and this theoretical 90,000, we will

found out exactly how many because, as some of you have noted,

we do not know exactly how many people responded to the World

Trade Center disaster. We have no census track for those individuals.

Mr. DEAL. Thank you. Thank you, Mr. Chairman.

Mr. PALLONE. Mr. Engel.

Mr. ENGEL. Thank you, Mr. Chairman. Dr. Howard, you heard

my opening statement. I am wondering if you could respond to the

criticism by the GAO that HHS has failed to ensure the uninterrupted availability of screening services with Federal responders.

They have also commented that you failed to truly provide screening and monitoring to people in other areas of the country who

came to Ground Zero. And, as you know, GAO said that NIOSH

has only been able to establish a network of nationwide providers

with 10 clinics in only seven States.

Do you believe HHS has acted appropriately in providing services

to responders? Because the evidence would seem not.

Dr. HOWARD. I am certainly not going to dispute the fact that

historically, as we have gone through establishing these programs

for responders that are not physically in the New York City/New

Jersey area, that we have had significant challenges. But right

now, I think we are on a good trajectory with a contract through

Mount Sinai for a large nationwide provider of monitoring services

called QTC.

So indeed, sir, I would agree that GAO has pointed out historically a lot of fits and starts that we have had with both the Federal

screening program as well as the nationwide program. We have

done a lot of work lately, and I am hoping that we are on the final

trajectory to make sure that those individuals have monitoring and

treatment services. Now, the treatment services, as I mentioned in

my statement, are not federally funded. The generous support of

the Red Cross through AOEC supports treatment.

Mr. ENGEL. Let me ask you this, Dr. Howard. In September 2006

Secretary Leavitt established an internal task force on what you

said to provide him with an analysis of the data and options on

how to address the health effects at Ground Zero.

In April of this year, the task force briefed the Secretary on eight

options that could be undertaken. We in Congress have yet to hear

about these various options. Can you please tell us what the eight

options are and if a decision has been made on a long-term comprehensive plan to care for those who are sick from 9/11?

Dr. HOWARD. Well, I think that all of us know the ways health

care is provided in the United States. I think we could all probably

sit down and make a list of Medicare, Medicaid, the VA system, in

addition to our own grant system through our Centers of Excellence. Those are the kind of ideas that were put in front of the Secretary. There are not any hidden ideas. There is no magic bullet

23

here. And all those types of systems that are the systems by which

health care is provided are ones that the Secretary is considering.

Mr. ENGEL. And let me ask you a funding question. In July, the

New York Times reported on an internal HHS document, which estimated yearly cost for the current World Trade Center Medical

Monitoring and Treatment Program at $195 million per year. It

also says that the costs will probably rise to $428 million per year.

Let me ask you. How much do you anticipate that the Medical

Monitoring and Treatment Program will cost per year?

Dr. HOWARD. First of all, as I emphasized to the chairman, a lot

of costs right now are highly speculative. You have to start out

with some assumptions. If we start out from the grantee data, and

this is grantee data that we have. We don’t have our own independent data.

We rely on the grantees, but if the grantees are spending about

$8,000 per patient per condition that they are treating, pharmacy

costs, diagnostic costs, treatment costs. You multiply that times the

number of people that are under treatment right now, which is

about 12,000, you get to the figure of about $90 or $100 million.

So you build on those kinds of figures that the grantees are producing.

By October, I am hoping that we will have more solid estimation,

but even for treatment at $100 million without hospitalization—

you have to add then hospitalization costs—you can see that health

care in America is not cheap whether it is for responders or anyone

else.

Mr. ENGEL. Well, let me ask you one final question with the

chairman’s indulgence. You mentioned Mount Sinai. I know we

have people from New York City in the next panel. How does the

manner in which Congress is currently funding the World Trade

Center Medical Monitoring and Treatment Program, its piecemeal,

its year-to-year funding, how does that affect the ability of grantees

like the New York City Fire Department, Mount Sinai and others

to collect medical and cost data? And how does it affect NIOSH’s

ability to administer the program in general?

Dr. HOWARD. Sir, I think it is a challenge. Institutions would like

consistent funding more than year to year despite my personal assurances and the assurances of my Department that the programs

are not going to go away. If you are a CEO of Mount Sinai or another medical center and you are looking at space considerations,

infrastructure development, they would like some idea that the

program is more than just that year. I think that is a real challenge. We have to constantly reassure them the program is not

going away despite the current year-to-year funding. But it is a

challenge, sir.

Mr. ENGEL. Thank you, Doctor. Thank you, Mr. Chairman.

Mr. PALLONE. Thank you. Mr. Ferguson. I’m sorry. I apologize.

Mr. Barton goes first.

Mr. BARTON. Well, Mr. Ferguson was here before me. I don’t

mind.

Mr. PALLONE. No, I think the rules are since you are the ranking

member, I am supposed to call on you first.

Mr. BARTON. Well, thank you. I will try not to take my entire 5

minutes. Is the problem, the health problem with the World Trade

24

Centers in New York, is it a scope problem? It’s just the catastrophe was so large that it has overwhelmed the healthcare system? Or is there something unique about the problem itself from

a health standpoint at the collapse of the Trade Center Towers?

Dr. HOWARD. If I understand your question, sir, I don’t think

that it is overwhelming. We have responded, and when I say we,

the entire family of grantees have responded I think magnificently

to the challenge of developing infrastructure to be able to see this

number of individuals in a monitoring program and then refer

those who need help to treatment. We have some backlogs it is

true, but I think the response from infrastructure development is

extremely positive.

On the issue of the uniqueness of the problem, I think we have

an entire body of data very consistent from multiple investigators

published in multiple peer review medical journals that looks at a

very limited number of conditions. Chiefly those of the respiratory

system, upper and lower respiratory system. Chiefly that of mental

health issues, post-traumatic stress disorder, anxiety, depression,

some musculoskeletal disorders, some gastrointestinal disorders.

That is really what we have seen consistently in elevated concentrations in these populations. So it is not a scope that we cannot

deal with. One of the issues with regard to respiratory conditions

is we don’t exactly know what the nature of the respiratory condition is in many cases, and we don’t know what the course is going

to be. We don’t know exactly how to treat them. So I think that

is a medical challenge.

Mr. BARTON. But this WTC cough, is that just a colloquialism

that is used in New York but it is not a unique condition caused

by the specific type of environmental hazard at the Trade Center?

Dr. HOWARD. Well, the World Trade Center cough was a name

that was acquired very early in the course of this disaster. It really

refers to one particular type of symptom that an individual manifests. But lung disease in general, lower lung disease in the lower

part of the respiratory track always seems to have cough as a

symptom. So there is nothing specific or unique about it.

Mr. BARTON. There is not a unique disease or condition associated with that specific location?

Dr. HOWARD. We don’t know that for sure because a lot of conditions that result in fibrosis of the lung, called interstitial fibrosis

of the lung, you look at a medical textbook, there are 200 causes

of it. Each one can be unique in terms of the cause. So in that

sense, we are not far enough along the medical research line to be

able to answer your question fully.

Mr. BARTON. OK, in terms of legal liability, is there a specific

problem between the Federal responders, the non-Federal responders, the city of New York, in terms of legal liability for work-related

occupational accidents or conditions that resulted as a result of responding to that disaster?

Dr. HOWARD. Sir, I am not sure I am qualified to address that

issue.

Mr. BARTON. Well, that appears to be one of the primary issues

that we are trying to—at least the people that come into my office,

the private contractors have an indemnification problem. They

claim that they went and did the work and were told by the city

25

officials that they would be indemnified. And now after the fact,

they are finding they have not been indemnified, and there are

some potential lawsuits. And there are requests for some Federal

legislation to indemnify them. I thought that was one of the primary reasons we are holding this hearing, but maybe I am mistaken in that regard.

Dr. HOWARD. There are indeed lawsuits that are pending against

the city and its contractors, but I don’t know any——

Mr. BARTON. But I mean is there a generic Federal OSHA regulation on that?

Dr. HOWARD. Not to my knowledge.

Mr. BARTON. OK. Thank you, Mr. Chairman.

Mr. PALLONE. Thank you. Let me just mention we have three

votes coming up, and we have about 10 minutes left. So Mr. Ferguson will ask questions, and then we will recess Dr. Howard and

come back maybe half an hour or so. And we will have a few more

questions. Mr. Ferguson.

Mr. FERGUSON. Thank you, Mr. Chairman. Thank you, Dr. Howard, for being here. Your written statement appears to say that

there are millions of dollars in funds that are still available under

some of the Federal health programs. Is that a correct interpretation of your written testimony?

Dr. HOWARD. Right, as I have indicated, we will probably know

for certain at the end of the grant period, October 30, 2007, how

much money we will have expended and how much we will have

that will be carried over to fiscal year 2007. Right now, we are estimating about $20 to $24 million will be carried over. We have $50

million from the Iraq supplemental. So already we have on hand

$74 million. So we are not going to enter 2008 without funding.

Mr. FERGUSON. What is your best estimate as to when we will

know if that is going to be sufficient to meet some of the health

treatment requirements and challenges that these victims are facing?

Dr. HOWARD. Exactly, and this is the question that everyone

wants to know, and my answer is often inadequate because what

I say is with time, as we gain more experience with the true cost,

the average cost per patient for treatment, we are going to be able

to give you a better number. Right now, it is hovering around

$8,000 per patient.

If you are seeing about 25 percent of the monitored patients that

are in treatment, then you can estimate those costs. But they are

relatively unstable right now. I would like to see some more time

take place at least until our grant period at the end of October,

maybe towards the end of the fall, until we have some more stable

numbers.

You can calculate any estimate at any time, but the stability of

that estimate from actuarial level is often elusive.

Mr. FERGUSON. What is being done in terms of R&D on new

treatments for some of these ailments? It seems like some of the

ailments that first responders and others are dealing with are new

and more difficult than perhaps other health challenges that have

typically been faced by a large number of people. What sorts of new

treatments are being developed? What are you aware of in terms

of those efforts underway?

26

Dr. HOWARD. We have no funds right now targeted specifically

to research. All of our funds that we have appropriated go to monitoring and treatment. The grantee institutions, many of them are

academic medical centers, and they have been very creative in

looking at their clinical findings and trying to figure out the best

ways to treat.

But specifically, they do not have money to spend in research per

se, and that is something that we hope in fiscal year 2008 to be

able to utilize some of the already appropriated money to be able

to give to the grantees to engage in research activities per se.

Mr. FERGUSON. That was going to be my next question. What

is—do you have any specific recommendations at this point, or are

those sort of informal conversations you are having with folks? I

mean are we going to need to reprogram funds? What is your sense

of how that can happen? It sounds like you believe it ought to happen.

Dr. HOWARD. Yes.

Mr. FERGUSON. Do you have any further—kind of any more specific recommendations at this point, or are you developing those

now?

Dr. HOWARD. Well, within the day-to-day measurement structure

that we do, our own plan that I administer, we are trying to set

aside targeted funds so that grantees can look into some issues

with regard to what is the exact nature of the respiratory conditions and how are they best treated.

But we don’t have money appropriated by the Congress specifically for that purpose; although, everyone that I have talked to

within the Department, within Congress, of course, is very attuned

to that issue. And I think the grantees might be, Mt. Sinai and others that are here on the other panel, might be best to ask about

their efforts because they have done heroic efforts with very little

money thus far to move the medical science along.

Mr. FERGUSON. Just in closing, Mr. Chairman, it seems like that

might be an area that we really would want to examine further if

we are experiencing these very significant health problems, if these

folks are experiencing these very significant health problems. Perhaps we should also be looking at new and different ways of treating them in addition to just simply plowing resources into the current treatments that we have which may or may not be as effective

as they need to be. Perhaps some of our efforts should be focused

on some different and better treatments and some research into,

perhaps we can take this terrible situation and create some good

from it in terms of finding new treatments for ailments and illnesses and symptoms that maybe we otherwise wouldn’t have an

opportunity to find.

Dr. HOWARD. Exactly, and in my subcommittee of the Secretary’s

task force, the Science Subcommittee, we have recommended a

number of studies along those lines. So that is a very important

point that you are making.

Mr. FERGUSON. Thank you. Thank you, Mr. Chairman.

Mr. PALLONE. Thank you. Dr. Howard, we are going to take

about a half an hour recess to vote on the floor, and then we will

have some questions when we come back. We won’t have a second

round though. We will just go through everybody. Everybody will

27

have a chance, and then we will go to the second panel. Thank you.

The subcommittee is in recess.

[Recess.]

Mr. PALLONE. The subcommittee will reconvene.

Dr. Howard, we left off with Congressman Fossella asking questions.

Mr. FOSSELLA. Thank you, Mr. Chairman, and thank you again,

Dr. Howard, and thank you for all you have done. I know in your

capacity you have been very vigilant and a very bright light, I

think, within efforts to try to reconcile what we have been trying

to reconcile for 6 years.

And I could just characterize, maybe if you will for lack of a better phrase, the perception that—and I speak this on a personal

level, and perhaps I speak for others—is there is a sense that we

are constantly sort of dragging folks to the table. From securing

just less than 2 years ago the Federal funding for treatment, to

your appointment, to Dr. Agwunobi’s

I guess there is a perception that—I won’t say perception. There

is an understanding that we would love for, in this case, the executive branch to be more out front leading the charge. And what has

happened in the last 6 years from the private sector to the health

care centers to the Centers for Excellence to the mayor’s office is

just an understanding of this is too big and too important to wait

for an answer and wait for the cavalry to come. So they have been

doing the job.

For example, we talk about the inability to truly estimate, and

we are always going to have disagreements on the margins and

whether the number is 50,000 or 51,000, 52,000. But I find it curious as to how New York City could estimate what treatment would

cost.

The mayor, if my understanding is correct, has committed $100

million until 2011. Why is it that the Federal Government can’t

come forward and say this is what we are going to commit until

2011 for the sake of argument? I recognize the nuances of the annual appropriations process. But wouldn’t it be so much better if

the cavalry came in and said whatever it is going to cost over the

next 2, 3, 4, 5 years, until we get a sense of reliable data, it is

going to happen?

And along those lines, April 3 is our understanding pursuant to

the letter Mr. Pallone cited. Did the task force provide recommendations to HHS regarding what they have determined to

date?

Dr. HOWARD. With regard to the latter question, the task force

was divided into two groups, a finance group and a science group.

I headed the science group, and we made recommendations to the

Secretary from both of the subcommittees, from the finance side

and from the science side.

A lot of the science issues we are trying to operationalize, looking

at research opportunities to move the science forward with the current grantees. From the finance side, I think again despite those

issues of policy that you talked about, the Department is extremely

interested in the stability of cost estimates so that they are able

to be able to project beyond just this last 6 months that we have.

I know that is a big issue in the Department.

28

Budget people, which I am not one, want some certainty in those

budget estimates. With regard to the policy options that you mentioned, they are beyond my task, and I will certainly take that back

to the Department.

Mr. FOSSELLA. Well, because I think there has been a vacuum in

a way, and it is being filled in different ways. It is an ultimate collaboration, especially, I think, reflecting the legislation we introduced last night. And we would love to have a comment from sort

of HHS as to whether they would support, let us say, that legislation. Have you had a chance to review the legislation or at least

an outline of it?

Dr. HOWARD. No, I haven’t had a chance to read the legislation,

and, of course, the administration’s position on legislation is decided at a level different than my own.

Mr. FOSSELLA. Well, we would love again some dialog. If the

goal—and you heard it in a bipartisan way here from those who

just declare it as an emergency and it demands a national response. To me, national dictates a Federal response.

And it would also free up personnel and people at the city level,

the municipal level. There is more litigation taking place. Why

can’t we get these individuals out of the courtroom, get the lawyers

out of the courtroom and settle this case?

I do think that with a strong Federal commitment, a lot of that

would find its way to a swifter conclusion if there was a notion that

the city of New York would not have to shoulder so much a burden.

And likewise and most importantly again I get back to the insurance of monitoring and treatment that Mr. Ferguson brought up,

and I think you would concur, the notion that research—why

should we be 6 years later just talking about whether we should

be providing funding for research? I mean it is a shame.

One just quick question. Do you think—and maybe you have answered it, but if there is any other way you can answer it that will

elaborate—the biggest problem adjustment the Department would

recommend at this time to improve the health monitoring treatment program? You talked about the grantees. You talked about

more data, more information.

Is there any other thing that we should be doing in a legislative

mechanism to free up flexibility at your end to get the answers or

solutions we are looking for?

Dr. HOWARD. From the scientific side, I have always said that

the money that we have had to date goes to monitoring services

and now treatment services because it is small amounts of money,

and we are always trying to make sure that we have enough to get

from year to year.

We have not expended any significant amount of money on real

research into the causes of some of these diseases or their best

treatments because we have been trying to shepherd the money for

services. So I think that is one area that we have spoken about already that, from my point of view as heading the Science Subcommittee that made recommendations to the Secretary, this is a

really important issue. Otherwise, we are not going to know exactly

what the contours of the problems are and how best to treat these

people.

29

Mr. FOSSELLA. Mr. Chairman, again I would like just on a personal level thank Dr. Howard. He is very passionate about what he

does, and again I said the bright light because you have been terrific in helping us all shepherd through this. And we would love to

get more folks seeing it your way.

Thank you, Mr. Chairman. I yield back.

Mr. PALLONE. Thank you. Thank you, Dr. Howard. We are done

with your questions.

Dr. HOWARD. Thank you.

Mr. PALLONE. And we appreciate this, and I know this is going

to be an ongoing concern so. I will just repeat again we do want

a plan from the administration, and we also would like to see

someone appointed as the head of that task force as quickly as possible.

Dr. HOWARD. Thank you.

Mr. PALLONE. If you will send that back. Thank you. And I will

ask the second panel to come forward please.

Thank you all for being here today. Let me just introduce everybody. Starting on my left is Mr. John Vinciguerra from the fire department of New York, although it says that you actually live in

New Egypt, New Jersey. That is a long commute. And then we

have Dr. Iris Udasin who is associate professor of environmental

and occupational medicine at the University of Medicine and Dentistry, New Jersey, the Robert Wood Johnson Medical School. It is

always a lot to say all that. She is actually from the clinical center

that is in my district in Piscataway. Thank you for being here, and

thank you for all that you do. And then we have Dr. Robin Herbert

who is associate professor of the community and preventative medicine at Mount Sinai School of Medicine in Manhattan. And we have

Ms. Cynthia Bascetta, who is director of health care issues for the

Government Accounting Office for the GAO. Dr. Jim Melius who is

administrator for New York State Laborers. And Mr. Edward

Skyler who is the deputy mayor for administration in the city of

New York, representing the mayor of New York.

So let me mention again that each witness has 5 minutes for

their opening statement. Obviously your written statements will be

submitted for the record. So we would like to have you keep to the

5 minutes if you could. You may, if you wish, submit additional

brief and pertinent statements in writing for inclusion into the

record later as well. And I will start with you, Mr. Vinciguerra.

Thank you for being here, and thank you for all that you have

done.

STATEMENT OF JOHN VINCIGUERRA, FIRE DEPARTMENT OF

NEW YORK (RETIRED), NEW EGYPT, NJ

Mr. VINCIGUERRA. Good morning. Thank you for having me. I

was glad to hear the testimony from Dr. Howard. It was nice to

sort of be reassured that the money is not going to be running out

tomorrow. I would just like to read my testimony and take any

questions you might have.

My name is John Vinciguerra. I am 39 years old and a father of

four. On January of this year, I was forced to retire as lieutenant

with the fire department, New York City, EMS command, due to

30

the lung damage that I sustained during the World Trade Center

disaster rescue and recovery effort.

It was one of the saddest days of my life when I had to turn in

my badge and end an 18-year career. Prior to becoming ill, I was

in good health, able to carry equipment and victims both up and

down many flights of stairs. I love to be able to help people and

felt I had one of the best jobs in the world.

September 11 started like any other day. I picked up an overtime

shift on the night tour. Left work early that morning. I went home,

hopped into bed, tried to get a nap because I had the rest of the

day off. Wanted to have time to spend with my family. My wife

came up and woke me up to tell me what was happening. We

watched the second plane hit the towers on TV. I was wide awake

in an instant.

Along with my wife, who was also an EMT, we grabbed our gear

and drove to the city. I was told to report to my station just over

the Brooklyn Bridge, began transporting equipment and personnel

back and forth to Ground Zero. I worked at the World Trade Center site for many days, both on the piles as part of the bucket brigade, treating people who were injured at the site and supervising

EMS crews from around North America.

I averaged twice a week doing 16- to 24-hour shifts each time

until about January 2002. At that point, it was just too difficult to

be there anymore.

While I do truly feel blessed to be here and be able to talk to you,

and I know there are many others in much worse condition than

myself, I also know that this has affected me in three major ways,

both physically, mentally, and financially. As far as physically, like

many others, I developed the World Trade Center cough. I was

given medication by the fire department doctors, which was

changed by my private doctor. When my breathing continued to deteriorate, another medication was added. I continued to work and

watch my lung volumes drop on my annual physicals and became

more and more run down but wanted to try to work through it.

On April 30, 2005, that came to an end. After suffering at home

for 24 hours hoping I just had a bad virus, I was taken to Robert

Wood University Hospital in Hamilton. I was hospitalized for severe respiratory distress and admitted to the ICU in it. A scan in

my lungs revealed a spot, and the oxygen profusion in my body was

so poor that they thought I had a pulmonary embolus, which is a

blood clot on my lungs.

Unfortunately, this was not the case. What was happening was

that the scarring in my lungs from breathing in all the toxins had

become so bad that I was no longer able to move enough air, and

my body was suffocating. I was also told that I know had high

blood pressure, and I had stopped breathing several times during

the night.

I was loaded up with steroids, antibiotics, and many other medications, and discharged a few days later. I currently cannot walk

up a flight of stairs without running out of breath. My lung volumes run between 30 to 60 percent of what they should be. I cannot run and play outside with my children. I need to be cautious

when temperature or humidity changes. I am very sensitive to

31

dust, pollen, and pollution, and I spend most of my time indoors

with a hepa filter that is my best friend.

I have to take at least seven medications a day every day that

cause both fatigue and weight gain. Due to my sleep apnea, I now

have to wear a mask over my face at night that blows air into my

nose to keep my airway open. Every time I put it on, I feel my ears

pop as if I am on an airplane. And it has also greatly diminished

my sense of smell, but it is much better than the prospect of suffocating in my sleep and stopping breathing.

Since becoming ill, I have been diagnosed with anxiety and depression, both related to post-traumatic stress disorder. I have

tried medications, but the side effects only seem to make matters

worse. Luckily for me, I have a strong marriage, and my wife has

been there for me. But the stress this has put on me, my marriage,

and our family is enormous.

After I first reported of my illness to the city of New York, my

claim was denied. I was told that since more than 2 years has

passed since September 11, I was no longer eligible for file a Worker’s Compensation claim. As you could imagine, I was despondent.

The thought of being left on my own. I felt that I had done all I

could to help this city and this country in its time of need, and now

I was being abandoned.

Fortunately, the New York media was relentless in reporting

both my case and the plight of others in similar situations. Legislation was introduced and passed in New York to extend the deadline

to file for a claim. Fifteen months after becoming sick, as legislation was taking effect, on July 26, my case was finally approved on

appeal. This event lead the way to me being retired and the end

of my career. It was not how I pictured that it would end, and it

is certainly a disappointment to me.

Financially, here there is a light at the end of the tunnel, but

things are going to get worse before they finally get better. Since

it took 15 months for my case to get approved, I was responsible

for all my doctors’ visits and medication copays. I was not working

and was unable to pay all the bills and continue to put food on the

table. I was forced to sell my home to try to keep my head above

water, and it didn’t take long for the creditors to start circling.

Even now, it has been over 2 years since I first became ill and

a year since my case has been approved. But the New York City

Law Department has still not paid the bills that have accumulated.

My original pulmonologist told me a year ago that he would not be

able to see me anymore because he has not been paid and still has

not been paid to this day.

In May 2007, I applied for Social Security disability. After following up with several phone calls, I was told in August that despite

all the documentation and the fact that I was forced to retire from

my respiratory problems, I would have to be sent for an anxiety

evaluation. And the earliest appointment that was available was

the end of September, the end of this month.

On top of all this, although I was granted a pension, I will not

come off payroll for the fire department until September 26 of

2007. Then I will have to wait until November to get my first pension check, and when that does come, it is only going to be a partial

32

payment until they get the numbers spooled up, and they can adjust them.

Since I have a biweekly pay mortgage, I am trying to work with

my bank so that I won’t be missing too many payments. I have also

tried to take a pension loan, but since I am so near to retirement,

it is not considered a disbursement. Since it is a disbursement, I

can’t take it until after my retirement date.

After that, it won’t arrive—they won’t cut the check until after

my retirement date and will take another 30 to 45 days to arrive

on top of that. I also looked to refinance my current mortgage, but

due to late medical bills, the banks want over 10 percent for a new

mortgage. It would be a long time before I recover financially.

While I feel good that hearings such as this are taking place and

it is comforting to know that so many people are concerned with

me and my fellow recovery workers, there still remains much to be

done. More money is needed, not just for monitoring, but for treatment of symptoms and conditions that are discovered. Financial assistance needs to be provided for those in need of help, whether

temporary or permanently. An advocate should be appointed to

help cut through the red tape that is facing not just the responders

but also the residents and school children that were affected. Because what good is a program if the people that need it most don’t

know it is there and can’t get it to work for them?

Also the World Trade Center Captive Insurance Fund should be

abolished and replaced with a compensation fund or another program that will put money to use where it is needed. It is disgraceful that the lead administrator is being paid $300,000 a year to run

a hostile fund that is throwing tens of millions of dollars at lawyers

to prevent giving financial support to those it was created for.

Thank you very much for your time and consideration.

[The prepared statement of Mr. Vinciguerra follows:]

STATEMENT OF JOHN VINCIGUERRA

My name is John Vinciguerra. I am 39 years old and a father of four. January

of this year I was forced to retire as a Lieutenant with the FDNY EMS command

due to lung damage sustained during the World Trade Center disaster rescue and

recovery. It was one of the saddest moments of my life when I had to turn in my

badge and end an 18 year career. Prior to becoming ill I was in good health and

able to carry equipment and victims both up and down many flights of stairs. I

loved to be able to help people and felt I had one of the best jobs in the world.

September 11, 2001 started for me like any other day. I had picked up an overtime shift on the night tour and left work in the early morning. I went home and

climbed into bed to grab a quick nap. My wife came and woke me up to tell me

what was happening, and we watched the second plane hit the towers. I was wide

awake in an instant. Along with my wife who is also an EMT, we grabbed our gear

and drove to the city. I was told to report to my station just over the Brooklyn

Bridge and began transporting personnel and equipment back and forth to ground

zero. I worked at the WTC site for many days on the pile as part of the bucket brigade, treating people who were injured at the site, and supervising EMS crews from

around North America. I averaged about twice a week doing 16–24 hour shifts each

time until January of 2002. After that, it was just too difficult to be there. And

while I truly feel blessed to be here and able to talk to you, and I know that there

are many others in much worse condition than myself, I also know that this event

has effected me in three major ways, physically, mentally, and financially.

Physically; like many others I developed the ‘‘World Trade Center Cough’’, and

was given medication by the FDNY doctors. This was quickly changed by my private

doctor. When my breathing continued to deteriorate, another medication was added.

I continued to work and watch my lung volumes drop at my annual FDNY

physicals. I became more and more run down but wanted to work through it. On

33

April 30 2005 that came to an end. After suffering at home for 24 hours hoping I

just had a bad virus, I was taken to Robert Wood University Hospital in Hamilton

NJ. I was hospitalized for severe respiratory distress and admitted to the intensive

care unit. A scan of my lungs revealed a spot, and the oxygen perfusion in my body

was so poor that they though I had a pulmonary embolus, or blood clot in my lungs.

Unfortunately this was not the case. What was happening, was that the scaring in

my lungs from breathing in all of the toxins had become so bad that I was no longer

able to move enough air, and my body was suffocating. I was also told that I now

had high blood pressure, and I had stopped breathing several times during the

night. I was loaded up with steroids, antibiotics, and many other medications, and

discharged a few days later. I currently cannot walk up a flight of stairs without

running out of breath. My lung volumes run from between 30 percent to 60 percent

of what they should be. I can not run and play outside with my children, I need

to be cautious when the temperature or humidity changes, I am very sensitive to

dust, pollen, and pollution, and I spend most of my time in my room with a hepa

air filter which is my new best friend. I have to take at least seven mediations a

day that cause both fatigue and weight gain. Due to my sleep apnea I have to wear

a mask over my face at night that blows air into my nose and keeps my airways

open. Every time I put it on it causes my ears to pop as if I were on an airplane,

and it has greatly diminished my sense of smell. But it is much better than the

prospect of suffocating in my sleep.

Mentally; since becoming ill, I have been diagnosed with anxiety and depression.

Both related to post traumatic stress disorder. I have tried medication but the side

effects only seemed to make matters worse. Luckily for me I have a strong marriage

and my wife has been there for me. But the stress that has been put on me, our

marriage, and our family is enormous. After I first reported my illness to the City

of New York, my claim was denied. I was told that since more than two years had

passed since Sept 11, 2001, that I was no longer eligible to file a workers compensation claim. As you could imagine, I was despondent at the thought of being left on

my own. I felt that I had done all I could to help the City, and this country in its

time of need, and now I was being abandoned. Fortunately the New York media was

relentless in reporting both my case and the plight of others in similar circumstances. Legislation was introduced and passed in New York to extend the deadline to file a claim. Fifteen months after becoming sick and as legislation was taking

effect, in July 2006 my case was approved on appeal. This event led the way to retirement and the end of my career. This was not how I pictured that it would end

and is certainly a disappointment to me.

Financially; here there is a light at the end of the tunnel, but things are going

to get worse before they get better. Since it took fifteen months for my case to get

approved, I was responsible for all my doctors visits and medication co-pays. I was

not working, and I was unable to pay all of the bills and continue to put food on

the table. I was forced to sell my home to try to keep my head above water. It didn’t

take long for the creditors to start circling. Even now it has been over two years

since I became ill, and a year since the case has been approved, but the New York

City Law Deptartment still has not paid the bills that accumulated. My original

Pulmonologist told me a year ago that he would not be able to see me anymore because he had not been paid and he still has not been paid to this day. In May 2007

I applied for Social Security Disability. After following up with several phone calls,

I was told in August that despite all of the documentation and the fact that I was

forced to retire for my respiratory problems, I would have to be sent for an anxiety

evaluation, and the earliest appointment was the end of September. On top of all

of this, although I was granted a pension, I will not come off of payroll for the

FDNY on September 26, 2007, then I will have to wait until November 2007 to get

my first check from the pension department. And when it does arrive, it will only

be a partial payment (less than half) for the first 3 to 6 months until the final numbers can be adjusted. Since I have a bi-weekly pay mortgage, I am trying to work

with my bank so as not to miss two payments. I tried to take a pension loan, but

since I am so near retirement, It is now considered a ‘‘disbursement’’ and I cannot

take it until I retire. On top of that, it needs to be sent out as a check and will

not arrive for 30–45 days. I also looked into refinancing my current mortgage, but

due to the late medical bills, the banks want over 10 percent for a new loan. It will

be a long time before I recover financially.

While I feel that it is a good thing that hearings such as this are taking place,

and it is comforting that so many people are concerned with me and my fellow recovery workers, there still remains much to be done. More money is needed not just

for monitoring, but for treatment of the symptoms and conditions that are discovered. Financial assistance needs to be provided to help those in need whether temporary or permanently. An advocate should be appointed to help cut through the

34

red tape that is facing not just the responders, but also the residents and school

children that were also effected, because what good is a program if the people that

need it the most don’t know it is there or cannot get it to work for them. The WTC

Captive insurance fund should be abolished and replaced with a compensation fund

or another program that will put the money to use where it is needed. It is disgraceful that the lead administrator is being paid $300,000.00 per year to run a hostile

fund that is throwing tens of millions of dollars at lawyers to prevent giving financial support to those it was created for. Thank you very much for your time and

consideration.

Mr. PALLONE. Thank you so much really. I would like to ask Dr.

Udasin to go next if you would. Is there a concern?

Ms. UDASIN. Yes, I had some slides.

Mr. PALLONE. You have some slides?

STATEMENT OF IRIS UDASIN, M.D., ASSOCIATE PROFESSOR,

ENVIRONMENTAL AND OCCUPATIONAL MEDICINE, UNIVERSITY OF MEDICINE AND DENTISTRY OF NEW JERSEY, ROBERT WOOD JOHNSON MEDICAL SCHOOL

Dr. UDASIN. Chairman Pallone, Ranking Member Deal, and honorable members of the Energy and Commerce Health Subcommittee, I am Iris Udasin, associate professor at UMDNJ, Robert Wood

Johnson School of Medicine, and New Jersey principal investigator

of the World Trade Center Medical Monitoring and Treatment Program.

I am board certified in internal and occupational medicine. My

experience includes more than 20 years of practice as a real doctor,

diagnosing and treating occupational and environmental illnesses.

I have personally examined approximately 1,000 patients who responded to the tragedy.

The complex mixture of contaminated material present at the

site has resulted in an unprecedented incidents of illness. Submitted with my testimony is a magnified dust particle, up there, that

was collected at the site. Scientists from my institution were involved in characterizing this material. Even 6 years after the tragic

event, our patients present with significant respiratory and gastrointestinal illnesses complicated by mental health disorders. In

order to fully appreciate the diseases in this population, I direct

your attention to the photographs of Deputy Chief Lacey Wirkus

and the other members of the Elizabeth Fire Department that responded to this tragic event.

These photographs illustrate the roots of exposure and explain

the mechanism of illnesses sustained by the population. Though

the individuals in this photograph and the next one had respiratory

protective equipment, the masks became weighted down by contaminated material and perspiration and did not offer sustained

protection.

As depicted in the picture, there were huge amounts of dust and

smoke debris on his face, clothing, hair, and skin. The material was

absorbed by breathing, skin contact, and ingestion, as workers

were contaminated even as they ate and drank at the site.

Most of our patients continue to work today despite suffering

from conditions such as asthma, bronchitis, sinusitis, laryngitis,

and gastroesophageal reflux. They have persistent shortness of

breath, wheezing, cough, chest pain, sinus pressure, sore throat, inVerDate 11-SEP-98 15:33 Oct 06, 2008 Jkt 000000 PO 00000 Frm 00039 Fmt 6633 Sfmt 6633 Q:\DOCS\110-64 SCOM1 PsN: SCOM1
35

digestion, heartburn, decreased exercise tolerance. Many suffer

from post-traumatic stress disorder and depression.

Some have lost or limited health insurance benefits or financial

hardship from loss of income. Uninsured patients clearly need the

services of the medical monitoring and treatment program as they

have minimal or no medical care. However, despite the fact that

the majority of patients seen in New Jersey are insured, at least

60 percent are either untreated or undertreated for complicated

medical and mental health illnesses.

Furthermore, typical health insurance has insufficient coverage

for mental health. In order to correctly diagnose World Trade-related illnesses, health professionals spend several hours evaluating

the medical, occupational exposure and psychological histories and

perform detailed physical and mental health assessments. These

assessments require more time than insurance typically allows for

these encounters.

Specialized testing may be needed to appropriately diagnose our

patients who have unusual presentations of asthma and other respiratory illnesses. Many community physicians do not have access

to these tests or may lack of the knowledge of the unique aspect

of diseases in this population.

The diagnostic dilemmas we face can be appreciated by the following patient presentations. Patient No. 1 is a 31-year-old man

who presented with a dry cough, sore throat, anxiety, and decreased ability to exercise. He was being treated for anxiety and

had a nasal spray that didn’t work and an asthma medication that

he took occasionally. Further examination showed the presence of

severe sinusitis and asthma.

His respiratory symptoms have improved after sinus surgery and

proper treatment of the asthma. His anxiety level has improved

but still requires prescription medication. His exercise tolerance

has returned to baseline.

Patient 2 is a 46-year-old with severe coughing and heartburn.

He took several cough medicines and nasal sprays with no relief.

His examination and baseline breathing tests were normal, but his

methacholine challenge test was diagnostic for asthma. And his endoscopy showed gastroesophageal reflux. He responded well to

treatment but requires five prescription medications.

Patient 3 is a 39-year-old previously healthy man who was extremely short of breath and had a chronic cough. His original diagnosis was pneumonia, which did not respond to antibiotics. Biopsy

of his lungs showed sarcoidosis. He currently takes three prescription medications but is disabled from his work as a New York City

police officer.

Once the diagnosis is made, treatment can be complicated and

frequently require several prescription medications. Even in patients who do have insurance, many have prohibitive copays or insurance constraints which prevent them from receiving brand

name medications. Beyond the above conditions, there is concern

about the possibility of life-threatening, long-term, chronic illnesses

such as pulmonary fibrosis, sarcoid, cancer, and heart disease. The

monitoring program provides the opportunity for early detection

and intervention to potentially lessen the severity of these illnesses.

36

It is our goal to improve the treatment of acute and persistent

health problems, enabling a decrease in future illness and disability and hopefully more productive lives. As a concerned physician,

I implore you to support the 9/11 Health and Compensation Act

and continue the funding by NIOSH of a program which allows experienced physicians to treat these complicated illnesses as well as

provide adequate diagnostic testing and prescription medications.

We want to continue to provide physical and mental health care for

those people who willingly took care of all of the rest of us.

Thank you for the opportunity to appear before the committee.

[The prepared statement of Dr. Udasin follows:

TESTIMONY OF IRIS G. UDASIN, M.D.

Chairman Pallone, Ranking Member Deal, and honorable members of the Energy

and Commerce Health Subcommittee. I am Iris G. Udasin, M.D., associate professor

of Environmental and Occupational Medicine at University of Medicine and Dentistry of New Jersey-Robert Wood Johnson School of Medicine and New Jersey Principal Investigator of the World Trade Center Medical Monitoring and Treatment

Program. I am board certified in internal medicine and occupational medicine and

serve as director of employee health for the University, and course director for the

medical student course in clinical prevention. My experience includes more than 20

years of clinical practice as a ‘‘real doctor’’ diagnosing and treating occupational and

environmental illnesses. I have personally examined and treated approximately

1,000 patients who responded to the tragedy at the World Trade Center.

The complex mixture of contaminated material present at the WTC site has resulted in an unprecedented incidence of illness. This material was highly alkaline,

leading to the absorption of large particles of cement, glass, asbestos, and other fibrous materials as well as toxic gases from combustion. Submitted with my testimony is a magnified picture of a dust particle that was collected from the WTC site.

It is noted that scientists at EOHSI (the Environmental and Occupational Health

Sciences Institute, a joint project of UMDNJ and Rutgers University) were involved

in characterizing this toxic material. Even 6 years after the tragic event, at least

two thirds of our patients present with significant respiratory and gastrointestinal

illnesses complicated by mental health disorders. In order to fully appreciate the

diseases that are now prevalent in this population, I direct your attention to the

photographs of Deputy Chief Lacey Wirkus and some of the other members of the

Elizabeth, New Jersey Fire Department that responded to the tragic event. These

photographs (see appendix) illustrate the routes of exposure to the toxic material

and help to explain the mechanism of the illnesses sustained by the responders.

Chief Wirkus donated these photographs for the purpose of representing all of the

responders who included construction workers, communication workers, law enforcement, health care workers, as well as all of the paid and volunteer rescue and recovery personnel. Though the individuals in this photograph had respiratory protective

equipment, you can see that the masks became weighted down by the contaminated

material and did not offer sustained protection from the toxic material. As depicted

in the picture, there were huge amounts of dust and smoke debris on his face, clothing, hair, and any other unprotected skin. The work was physically demanding, but

these workers persisted, working shifts of 12 hours of more in the days that immediately followed the tragedy.

The toxic material was absorbed by breathing, skin contact, and ingestion, as

workers were contaminated even as they ate and drank at the site. This population

continued to work at the site, and most of them continue to work today despite suffering from conditions such as asthma, bronchitis, sinusitis, laryngitis, rhinitis, and

gastroesophageal reflux. They have persistent symptoms including difficulty breathing, shortness of breath, wheezing, chronic cough, chest pain, head congestion, sinus

pressure, sore throat, indigestion, and heartburn. Some patients present with decreased exercise tolerance and fatigue, which potentially could disable them from

sensitive law enforcement, fire fighting and construction work. Many of our patients

suffer from post traumatic stress disorder and depression. Some of our patients are

now not able to work, or are working at lower status jobs. Many have lost or have

limited health insurance benefits as they are not able to work at their chosen jobs,

or were forced to take early retirement.

Uninsured patients and those without prescription benefit plans clearly need the

services of the WTC Medical Monitoring and Treatment Program as they have miniVerDate 11-SEP-98 15:33 Oct 06, 2008 Jkt 000000 PO 00000 Frm 00041 Fmt 6633 Sfmt 6633 Q:\DOCS\110-64 SCOM1 PsN: SCOM1
37

mal or no medical care. However, despite the fact that the majority of patients seen

at our New Jersey site have at least some health insurance and do have primary

care physicians, at least 60 percent of our patients are either untreated or under

treated for complicated and comorbid medical and mental health illnesses. Furthermore, typical health insurance covers mental health issues separately and often has

insufficient reimbursement rates, rendering mental health care extremely difficult

to afford. In order to correctly diagnose these illnesses, it is necessary for the health

professionals to spend significant amounts of time simultaneously evaluating the

medical, occupational, exposure, and psychological histories, as well as performing

a detailed physical and mental health examination. These medical monitoring assessments can take several hours to result in proper diagnosis of our patients, far

longer than what insurance covers for typical community encounters. In many instances additional testing is necessary; including spirometry with flow volume loops,

x-rays, and laboratory testing. Often specialized testing such as methacholine challenge testing, rhinolaryngoscopy, endoscopy, and overnight polysomnography is

needed to appropriately diagnose our patients. The purpose of these specialized tests

is to identify and treat unusual presentations of asthma and other respiratory illnesses which are described in the examples below. Many community physicians do

not have access to these tests, while our UMDNJ specialists have built up a substantial hands-on knowledge of the unique aspects of routine diseases in this population. Additionally, because of the atypical presentations of our patients, it is difficult to assess these combination of conditions, even for physicians with extensive

experience in the individual conditions.

The diagnostic dilemmas faced by examining physicians can be appreciated by the

following patient presentations:

Patient 1 is a 31 year old man who presented with a dry cough, sore throat, anxiety, and decreased ability to exercise. He was being treated for anxiety and had a

nasal spray that didn’t work and an asthma medication that he took occasionally.

Further examination showed the presence of severe sinusitis, as well as asthma. His

respiratory symptoms have improved after sinus surgery and proper treatment of

his asthma. His anxiety level has improved, but still requires prescription medication for his anxiety and asthma. His exercise tolerance has returned to previous levels.

Patient 2 is a 46 year old man with severe coughing and heartburn. He had been

on several prescription cough medicines as well as numerous nasal sprays with no

relief. His physical examination was normal, as was his baseline breathing test.

However, his methacholine challenge testing was diagnostic of asthma or reactive

disease, and he responded well to prescription strength asthma medication, but does

require three asthma medications on a daily basis and one medication on an as

needed basis. He was also diagnosed with gastroesophageal reflux, and requires prescription strength medication.

Patient 3 is a 39 year old previously healthy man who was extremely short of

breath and had a chronic cough. His original diagnosis was pneumonia. He received

several courses of antibiotics without relief. Biopsy of his lungs was consistent with

sarcoidosis. He currently takes three prescription strength medications, but is unfortunately disabled from his work as a police officer.

Once the diagnosis is made, treatment is also complicated and frequently requires

the use of several prescription medications. This is clearly a burden to patients who

do not have prescription drug coverage. Even in patients who do have coverage,

many have prohibitive co-pays, or have insurance constraints which prevent them

from receiving brand name medications which might better treat their illnesses.

Beyond the common upper and lower respiratory conditions that affect the majority of our patients, there is concern about the possibility of life-threatening long

term chronic illnesses such as pulmonary fibrosis, sarcoidosis, cancer, and heart disease. The monitoring program provides the opportunity for early detection and

intervention to potentially lessen the severity of these illnesses. It is our goal to improve treatment of the acute and persistent health problems seen now in our patients, enabling a decrease in future illness and disability and hopefully more productive lives.

In order to continue to allow experienced physicians to treat these complicated illnesses as well as provide adequate diagnostic testing and prescription medications

that are needed, as a concerned physician I implore you to continue the funding of

the program by the National Institute for Occupational Safety and Health. We continue to provide physical and mental health care for those people who willingly care

for all of the rest of us.

Thank you for this opportunity to appear before the subcommittee.

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Mr. PALLONE. Thank you, and again thank you so much for all

that you have done. Next we have Dr. Robin Herbert from Mount

Sinai. Thank you.

STATEMENT OF ROBIN HERBERT, M.D. ASSOCIATE PROFESSOR, COMMUNITY AND PREVENTATIVE MEDICINE, MOUNT

SINAI SCHOOL OF MEDICINE, NEW YORK, NY

Dr. HERBERT. Thank you. Chairman Pallone and other esteemed

members of the committee, thank you so much for inviting me to

testify today. I want to thank the New Yorkers on the subcommittee, Congressman Weiner, Mr. Engel, and other members from

New Jersey, Congressman Ferguson in addition to the chair. Finally I would like to extend my thanks to Congressman Fossella as

well as Congresswoman Maloney and Congressman Nadler and the

entire New York delegation for their steadfast support of World

Trade Center responders.

I direct the data and coordination center of the World Trade Center Medial Monitoring and Treatment Program. This is a consortium of five clinical Centers of Excellence in New York and New

Jersey. The WTC Monitoring and Treatment Program diagnoses,

treats, documents, and tracks the illnesses that have developed and

the workers and volunteers who responded to 9/11.

We perform this work along with our sister Center of Excellence

at the New York Fire Department. In the days, weeks, and months

that followed September 11, 2001, more than 50,000 hardworking

Americans from across the United States came to serve selflessly

without concern for their health and well being. These responders

included both traditional responders, such as firefighters and law

enforcement officers, as well as many non-traditional responders,

such as members of the building trades, utility workers, building

cleaners, and a vast array of other working groups. And when I

talk about responders, I am talking about this broad array of workers and volunteers.

In the months after the terrorist attacks, concerns grew about

the potential health effects among the responders. In 2001, as we

began to see individuals who appeared to have developed illnesses

after performing World Trade Center response work, Congress authorized funding to establish a medical screening program to identify possible World Trade Center related illnesses among responders.

That funding lead to creation of a program that provided free

comprehensive medical examinations to over 11,400 World Trade

Center responders in the New York, New Jersey, and throughout

the Nation. Between 2002 and 2006, as the monitoring and health

needs of responders became clearer with the support of Congress,

the medical monitoring program consortium, coordinated by Mount

Sinai and the Fire Department of New York program, expanded

and most recently in fall of 2006, received Federal funding to add

comprehensive treatment services.

Thus with your support over time, the programs have evolved

into comprehensive, highly skilled centers of excellence for monitoring and treatment of World Trade Center responders. The goals of

these monitoring treatment program Centers of Excellence are one,

to provide free comprehensive monitoring examinations at regular

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intervals for responders. Two, to provide medical and mental

health treatment for all responders with World Trade Center related illnesses, regardless of ability to pay. And three, to document

and track diseases possibly related to exposure sustained at the

World Trade Center.

With Federal support, the Mount Sinai coordinated Center of Excellence has provided initial comprehensive medical and mental

health monitoring examinations to over 22,000 responders. Over

6,300 responders have received 47,000 medical and mental health

treatment services through our New York and New Jersey consortium Centers of Excellence since 2003.

Demand for these programs remains great today. Even now, 6

years after September 11, about 400 new responders register on a

monthly basis via the Mount Sinai phone bank to participate in the

program. And in August 2007, 771 new participants signed up for

the program.

In September 2006, last year, our consortium published a paper

in the highly respected, peer review journal ‘‘Environmental Health

Perspectives.’’ This detailed our findings from 9,442 responders

who we examined between 2002 and 2004. Key findings included—

and this paper is appended to my testimony—46.5 percent reported

experiencing new or worsened lower respiratory symptoms during

their response work, and 62.5 percent had new or worsened upper

respiratory symptoms, with overall rates of upper and lower symptoms at 68.8 percent.

At the time of examination up to two and a half years after the

rescue and recovery efforts, 59 percent of responders were still experiencing upper and/or lower respiratory symptoms. One-third of

the responders had abnormal breathing tests, and these are objective tests. And among non-smokers, the rate of abnormal breathing

tests was double what was expected.

These findings are very similar to what has been reported by the

Fire Department of New York who have reported on symptoms in

addition to diseases. For example, they reported that 40 percent of

firefighters had persistent lower respiratory symptoms and 50 percent has persistent upper respiratory symptoms more than a year

after September 11.

I would also like to quickly, if I may, go over by about 1 minute,

present a snapshot in time of what we have been seeing with our

consortium clinics in the 3 months from April to June 2007 in a

treatment program. During that time period, the consortium saw

2,323 patients in 4,693 visits. And this is now the treatment program, not the monitoring. So these are the people who are sick,

who are cared for by Dr. Udasin and my other colleagues.

Among that group, 40 percent were treated for lower respiratory

conditions. The most common group of conditions were asthma and

an asthma-like condition called RADS. Thirty percent had those

conditions. Fifty-nine percent had upper respiratory conditions.

Thirty-six percent of our patients in treatment had mental health

problems, including post-traumatic stress disorder in 21 percent

and depression in 15 percent.

We also frequently found social and economic disability among

our patients. More than 30 percent of our previously healthy responders were either unemployed, laid off, or on sick leave or disVerDate 11-SEP-98 15:33 Oct 06, 2008 Jkt 000000 PO 00000 Frm 00047 Fmt 6633 Sfmt 6633 Q:\DOCS\110-64 SCOM1 PsN: SCOM1
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ability. And 28 percent had no medical insurance at some time period during the 3 months.

We still have two major unanswered questions about World

Trade Center responders and what their health outlook is. Number

one, we do not know and we need to know if the respiratory, gastrointestinal and mental health problems that we are currently observing will continue to persist. If so, for how long and with what

degree of severity and associated disability.

Second, we need to know if new health problems will emerge in

future years in responders as a consequence of their exposures to

the uniquely complex mix of chemical compounds that contaminated the air, soil, and dust of New York City and the aftermath

of September 11.

I would like to close by saying that we are very appreciative that

we have had resources provided to serve the brave men and women

who responded to the disaster. We are very honored to be able to

provide treatment and monitoring. We do believe that these services need to continue into the future. Thank you very much.

[The prepared statement of Dr. Herbert follows:]

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Mr. PALLONE. Thank you, Dr. Herbert. From the GAO, Ms. Cynthia Bascetta.

STATEMENT OF CYNTHIA BASCETTA, DIRECTOR, HEALTH

CARE ISSUES, GOVERNMENT ACCOUNTABILITY OFFICE,

WASHINGTON, DC

Ms. BASCETTA. Thank you, Mr. Chairman and members of the

subcommittee. I am pleased to be here today to discuss the implementation of federally funded health programs for responders who

served in the aftermath of the World Trade Center disaster.

As we all know, these responders were exposed to numerous

physical hazards, environmental toxins, and psychological trauma,

and it is clear from numerous studies that these exposures continue to exact a toll for many of them 6 years after the attack.

My testimony is based on our July 2007 report which was done

for Mr. Fossella, Mrs. Maloney, and Mr. Shays, and four previous

testimonies in which we discussed the different programs set up for

various categories of responders and highlighted that the World

Trade Center Federal responder screening program had accomplished little and lagged behind programs for other responders.

Today, I would like to focus on the status of three things:

NIOSH’s awards for treatment to the World Trade Center health

program grantees, the services provided for Federal responders,

and NIOSH’s efforts to provide services for non-Federal responders

residing outside the New York City metro area.

First, last fall NIOSH awarded and set aside funds totaling $51

million from its $75 million appropriation to pay for treatment

services, the first time Federal funds were awarded for this purpose. About $44 million was for outpatient treatment, and about $7

million was set aside for inpatient hospital care. Most of the funding went to the fire department and the New York/New Jersey consortium.

In addition to outpatient care, Federal funds paid for 34 hospitalizations of responders so far. NIOSH is now planning how to

use the $50 million emergency supplemental appropriation made in

May 2007 to continue support for treatment in fiscal year 2008.

Second, we reported this July that HHS has had continuing difficulties ensuring the uninterrupted availability of services for Federal responders who have been eligible only for one-time screening

examination. The provision of these screening examinations has

been intermittent. HHS suspended them from 2004 to December

2005, resumed them for about a year, then placed the program on

hold and suspended scheduling exams from January to May 2007.

The last interruption occurred because interagency agreements

were not put in place in time to keep the program fully operational.

In addition, the provision of specialty diagnostic services associated with screening has also been intermittent. Responders often

need further diagnostic tests from ear, nose, and throat physicians,

cardiologists, and pulmonologists. And the program had referred

responders and paid for these diagnostic services; however, because

the contract with the new provider network did not cover these

services, they were unavailable from April 2006 until the contract

was modified in March 2007.

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NIOSH has considered expanding the services for Federal responders to include monitoring examinations, the same follow-up

physical and mental health exams provided to other categories of

responders. Without this follow-up, health conditions may not be

diagnosed and treated, and knowledge of the health effects caused

by the disaster may be incomplete.

Third, NIOSH has not ensured the availability of screening and

monitoring services for non-Federal responders who reside outside

the New York City area, although it recently took steps to expand

their availability. Similar to the intermittent service pattern for

Federal responders, NIOSH’s arrangements for a network of occupational health clinics to provide services nationwide were on

again, off again. NIOSH renewed its efforts to expand the provider

network, however, and in May of this year completed about 20

exams.

Mr. Chairman, despite HHS’s recent consideration of ways to add

monitoring for Federal responders and to improve the availability

of screening and monitoring services for Federal and non-Federal

responders nationwide, its efforts remain incomplete.

Moreover, the start and stop history of the Department’s efforts

to serve these groups does not provide assurance that the latest efforts to extend screening and monitoring services to these responders will be both successful and sustained over time.

As a result, we recommended in our July 2007 report that the

Secretary take expeditious action to ensure the availability of

health screening and monitoring services for all people who responded to the attack on the World Trade Center, regardless of

their employer or their residence. To date, HHS has not responded

to our recommendation. That completes my statement. I would be

happy to answer your questions.

[The prepared statement of Ms. Bascetta follows:

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Mr. PALLONE. Thank you. Dr. Melius.

STATEMENT OF JAMES MELIUS, M.D., ADMINISTRATOR, NEW

YORK STATE LABORERS

Dr. MELIUS. Chairman Pallone, other members of the subcommittee of Health, I greatly appreciate the opportunity to appear

before you today. I have been involved with health issues at the

World Trade Center since shortly after September 11. Over 3,000

of our union members were involved in the response and cleanup

activities on site, and I would add that includes many not only

from New York, but also our members from State of New Jersey

who came over to assist and who worked at the site.

For the past 4 years, I have served as chair of the steering committee for the medical monitoring and treatment program and have

been involved in oversight in working on outreach and other activities with Dr. Herbert and others with the New York City Fire Department on this program.

I believe that they have already—the physicians involved in

these programs already talked about some of the medical problems

that people are experiencing. And given the focus of these hearings,

I like to sort of briefly mention two other issues regarding why it

is so important that there be Federal support for this medical monitoring and treatment program.

One would expect—what are some of the other potential sources

of funding that could pay for this? Well, one possible source of

health insurance coverage; however, I think it is important to know

that all health insurance plans exclude coverage for work-related

injuries and illnesses. This is a basic part of health insurance. It

extends even to the Federal Medicare program. They do not provide

coverage.

If an insurance company finds that a person is applying for what

they believe to be a work-related health problem, they will deny

that claim or certainly raise questions about that claim. So we cannot rely on it, for that reason, to provide coverage for everybody

who has become ill by this program.

We have also found that, as this program has evolved as people

have sought treatment, that this use of health insurance today has

put a great strain on the health insurance plans that cover these

particular responders. In the case the city of New York has borne

much of the cost through their health insurance plan to date. The

various labor unions in New York, who operate either their own

health insurance plans or provide partial coverage such as pharmaceutical coverage for their members, have also experienced severe

financial strain from having to cover the medical costs for many of

the responders.

Another alternative to provide coverage is Worker’s Compensation, but I think, as we have already heard today in a very difficult

example of how problematic it is for many of these responders to

obtain Worker’s Compensation coverage. It is long delays in getting

that coverage. The coverage is often incomplete. The coverage often

questions the need for follow-up medical treatment and can involve

many, hearings, administrative proceedings, and especially long

delays. Three, 4, 5, years or more before people can initially receive

coverage under Worker’s Compensation is not unusual.

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To rely on Worker’s Compensation for coverage for these responders also shifts the burden for the cost to their employers and

to the insurance companies involved. We have already heard the

concerns about the contractors involved who thought they were indemnified for working at the World Trade Center site, for responding so quickly, and certainly the New York City itself, which is selfinsured in regards to Worker’s Compensation cost would end up

picking up these very large and very significant medical costs if we

try to rely only on Worker’s Compensation coverage to cover all the

health care needs.

I believe that we need a comprehensive solution to address the

health needs of these rescue and recovery workers. We cannot rely

on a fragmented system and should not rely on a system that utilizes private philanthropy, like the Red Cross, health insurance,

line-of-duty disability retirement, and Worker’s Compensation to

support the necessary medical monitoring treatment for the many

thousands of people who have become ill because of their World

Trade Center exposures.

If we rely on this fragmented approach, we will inevitably leave

many of these ill and disabled rescue and recovery workers without

the needed medical treatment and will only worsen their health

condition. I think testimony we have already heard on this panel,

I think, illustrates the problems with a fragmented system that is

not responsive to the needs of these responders.

In my testimony, I have laid out what I think should be the key

points in any Federal legislation that would provide comprehensive

coverage that should extend not only to deal with the health issues

but also to provide compensation for people who have become disabled because of their exposures at the World Trade Center.

I believe that the legislation introduced last night by Representatives Maloney, Nadler, and Fossella and others really addresses all

of these goals and provide the comprehensive framework needed to

address these serious medical problems and would lay the basis for

both comprehensive coverage as well as the long-term coverage

that is required.

I really want to thank Representative Fossella for your efforts,

I think, on behalf of all the labor unions who represent people involved in this response. We greatly appreciate your efforts as well

as those efforts of Representatives Maloney, Nadler, and the rest

of the New York delegation to help address this. And I appreciate,

Mr. Pallone, your efforts in holding this hearing. And hope we can

move forward to get a comprehensive legislation that is so badly

needed. Thank you.

[The prepared statement of Dr. Melius follows:]

TESTIMONY OF JAMES MELIUS, M.D.

Chairman Pallone and members of the Subcommittee on Health. I greatly appreciate the opportunity to appear before you at this hearing.

I am James Melius, an occupational health physician and epidemiologist, who currently works as Administrator for the New York State Laborers’ Health and Safety

Trust Fund, a labor-management organization focusing on health and safety issues

for union construction laborers in New York State. During my career, I spent over

7 years working for the National Institute for Occupational Safety and Health

(NIOSH) where I directed groups conducting epidemiological and medical studies.

After that, I worked for 7 years for the New York State Department of Health

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where, among other duties, I directed the development of a network of occupational

health clinics around the state. I currently serve on the Federal Advisory Board on

Radiation and Worker Health which oversees part of the Federal compensation program for former Department of Energy nuclear weapons production workers.

I have been involved in health issues for World Trade Center responders since

shortly after September 11. Over 3,000 of our union members were involved in response and clean-up activities at the site. One of my staff spent nearly every day

at the site for the first few months helping to coordinate health and safety issues

for our members who were working there. When the initial concerns were raised

about potential health problems among responders at the site, I became involved in

ensuring that our members participated in the various medical and mental health

services that were being offered. For the past 3 years, I have served as the chair

of the Steering Committee for the World Trade Center Medical Monitoring and

Treatment Program. This committee includes representatives of responder groups

and the involved medical centers (including the NYC Fire Department) who meet

monthly to oversee the program and to ensure that the program is providing the

necessary services to the many people in need of medical follow-up and treatment.

I also serve as co-chair of the Labor Advisory Committee for the WTC Registry operated by the New York City Department of Health. These activities provide me with

a good overview of the benefits of the current programs and the difficulties encountered by responders seeking to address their medical problems and other needs.

I believe that other physicians involved in the medical monitoring and treatment

program for World Trade Center responders have already presented the medical

findings from their respective medical program for these responders. The pulmonary

disease and other health problems among both fire fighters and other responders

are quite striking and quite worrisome. All of the medical programs have done an

outstanding job in establishing their respective monitoring programs and in providing high quality medical examinations for many thousands of rescue workers and

responders. These programs also recognized the problems that many of their participants were having paying for medical care for the conditions diagnosed in the medical monitoring programs and have made efforts to help the participants in obtaining

necessary assistance. Given the focus of these hearings, I believe that it may be

helpful to examine the reasons why so many of the participants need assistance for

paying for their medical treatment.

HEALTH INSURANCE COVERAGE

The people who worked in the initial response to the September 11 disaster and

the later recovery activities represented many different types of workers. On the

public safety side, there were fire fighters, police, and emergency medical services

workers. The response and recovery activities also included construction trades

workers, utility workers, sanitation workers, transit workers, cleaning workers, and

NYC municipal workers from many agencies. Many other people just volunteered

to work at the site especially in the first few days after September 11th. Despite

the diversity of backgrounds and job duties, these different groups are showing very

similar patterns of illness. The pulmonary changes found in fire fighters have also

been demonstrated in the rescue and recovery workers being monitored in the

Mount Sinai medical program. Most recently, an independent study conducted by

medical researchers at Penn State University of NYC police officers responding to

the WTC disaster reported similar respiratory findings among the group that they

examined. The other types of medical and mental health problems documented

among WTC responders also appear to be similar across all groups of responders.

However, given the diversity of this workforce, it is not surprising that their

health insurance coverage might be quite variable. I will provide a general overview.

All city workers are covered through the city’s general health insurance plan

which provides basic coverage including retirement coverage for long time workers.

However, pharmaceutical coverage is provided through a different plan administered through each separate union. Construction trade workers are usually covered

through their labor-management health insurance fund which provides basic health

insurance coverage and some pharmaceutical coverage. The pharmaceutical coverage is often quite limited with high deductibles and co-pays. These health plans

require that the participant work a substantial number of days each quarter or year

in order to maintain eligibility. An ill construction worker can easily lose their coverage by missing too many work days. Utility workers have general medical coverage including some pharmaceutical benefits. Cleaning workers (people who

cleaned the residential and commercial buildings around the WTC) often worked for

contractors who offered no health benefits at all. The majority of the people in the

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Mt. Sinai treatment program up to now have had no health insurance coverage or

very limited coverage.

All health insurance plans exclude coverage for work-related injuries and illnesses. Even Medicare has an active program to identify and recover payments for

work-related services. While it is recognized that there may be uncertainty about

whether a condition being diagnosed is work-related or not, this consideration could

easily lead to the denial of health insurance coverage for many people with WTCrelated health conditions. New York State does have in place mechanisms for health

insurance providers to be reimbursed for medical expense payments incurred for

conditions that are ultimately determined to be eligible for workers’ compensation

coverage. However, these mechanisms are administratively complicated and do not

necessarily prevent the health insurer from denying reimbursement for WTC-related health expense.

Another problem with health insurance is the limitations on coverage of many of

the health insurance plans that cover the participants. This is especially critical for

pharmaceutical coverage. Treatment for many of the WTC-related conditions (asthma, mental health problems, et cetera.) requires substantial medication costs. These

costs commonly range from $5,000 to nearly $15,000 per year for participants. Many

of the plans covering WTC participants have high deductibles or co-pays. Co-pays

and deductibles can easily cost the participants with high medication costs several

thousand dollars per year. These costs can severely strain the finances of a person

with a moderate income especially if they have other health care costs and are missing significant time from their work due to illness. For those without any health

insurance, the financial impact is even greater. Another potential problem is that

many of these insurance programs have lifetime caps for each participant. Although

these caps seem high ($500,000 to $1 million or more), they can easily be exceeded

with a long term serious illness.

The medical and pharmaceutical costs for WTC-responders have also severely

strained the health insurance plans for many of the responder groups, especially

those providing pharmaceutical coverage. These funds are already stressed by the

rapidly rising costs of health care. Those plans with a significant number of members who worked at the WTC response and clean-up have found that the overall

medical and pharmaceutical costs for their plans have significantly increased due

to the large number of participants with WTC-related medical costs. This has even

led some to consider cutting back on their benefits for all members in order to absorb the costs for the WTC group.

WORKERS’ COMPENSATION COVERAGE

One alternative to health insurance coverage for WTC-related conditions is workers’ compensation insurance. Workers’ compensation is supposed to be a no fault insurance system to provide workers who are injured or become ill due to job-related

factors with compensation for their wage loss as well as full coverage for the medical

costs associated with the monitoring and treatment of their condition.

Similar to health insurance, the WTC program participants are covered by a variety of state, Federal, and local programs with different eligibility requirements, benefits, and other provisions. Most private and city workers are covered under the

New York State Workers’ Compensation system. New York City is self insured while

most of the private employers obtain coverage through an outside insurance company. Uniformed services workers are, for the most part, not covered by the New

York State Workers’ Compensation system but rather have a line of duty disability

retirement system managed by New York City. A fire fighter, police officer, or other

uniformed worker who can no longer perform their duties because of an injury or

illness incurred while on duty can apply for a disability retirement which allows

them to leave with significant retirement benefits. However, should a work-related

illness first become apparent after retirement, no additional benefits (including medical care) are provided, and the medical benefits for even a recognized line of duty

medical problem end when the person retires. Federal workers are covered under

the compensation program for Federal workers. Coverage for workers who came

from out of state will depend on their employment arrangements with their private

employer or agency. However, volunteers from New York or from out of state are

all covered under a special program established by the New York Workers Compensation Board after 9/11.

The major difficulty with these compensation systems is the long delays in obtaining coverage. For example, the NYS Workers’ Compensation system is very bureaucratic. The insurer may challenge every step of the compensation process including

even diagnostic medical testing. This challenge usually requires a hearing before a

Workers’ Compensation Board (WCB) administrative judge to evaluate the case, and

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this hearing may often be delayed for months. Even once the case is established,

the insurer can still challenge treatments recommended for that individual even for

a medication that the individual may have been taking for many months for a

chronic work-related condition. Thus, it may be many years before the case of a person with a WTC-related condition is fully recognized and adjudicated by the compensation system. Meanwhile, the claimant may not be receiving any medical or

compensation benefits or may have had their benefits disrupted many times.

In order to alleviate some of the problems for WTC claimants, last year New York

State implemented some new programs that were deigned to improve coverage for

WTC responders by providing medical coverage and salary compensation for responders while their WCB cases were being evaluated. However, these provisions

must be initiated by the insurer carrier, and there is uncertainty as to who would

be responsible for reimbursing these costs if the claims are ultimately denied. To

date, these provisions do not appear to be widely used. There was also legislation

passed last year that allows more New York City workers to obtain disability retirement benefits for WTC-related conditions. Currently, there is an advisory task force

in place that is examining how best to implement this legislation. Finally, there was

a bill passed allowing people who worked at the WTC site to register for Workers’

Compensation benefits. Potential claimants were given a year to submit a registration form to the Board that makes them eligible to apply for benefits should they

later develop a WTC-related health condition. Prior to that, claimants who later developed a WTC-related medical condition were not eligible to file claims because

they were judged to have missed the filing deadline required by law. In addition,

New York State has just passed broad workers’ compensation reform legislation that

makes many changes in the current system. Once implemented, this legislation

could help to alleviate some of the delays in the current system. However, it will

be some time before all of these changes assist WTC claimants. Meanwhile, claimants continue to face long delays and many hurdles in obtaining workers’ compensation coverage for any conditions resulting from their WTC exposures. It is not clear

that the recent changes in the system will adequately address these problems.

I would also add that depending on workers’ compensation and disability retirement systems to cover the medical costs for the monitoring and treatment program

places the financial burden on the employers and insurance companies. New York

City is self insured and thus would pay directly for all claims. The private employers involved will also have greater costs either by directly paying for claims if they

are self insured or through higher premiums due to an increase in their experience

rating.

COMPREHENSIVE SOLUTION

A comprehensive solution is needed to address the health needs of the 9/11 rescue

and recovery workers. We cannot rely on a fragmented system utilizing private philanthropy, health insurance, line of duty disability retirement, and workers’ compensation to support the necessary medical monitoring and treatment for the thousands of people whose health may have been impacted by their WTC exposures.

This fragmented approach will inevitably leave many of the ill and disabled rescue

and recovery workers without needed medical treatment and will only worsen their

health conditions. The delays and uncertainty about payments would discourage

many of the ill rescue and recovery workers from seeking necessary care and discourage medical institutions from providing that care.

This is a critical time for the federally funded treatment programs. Their funding

will soon run out, and Federal officials are already proposing sending letters informing the participants that they must seek alternative arrangements for their care.

Attempting to provide this care through some sort of voucher system as is currently

being considered by the Department of Health and Human Services would also be

disruptive. Discontinuing or disrupting this high quality, coordinated medical treatment would only exacerbate the health consequences of the 9/11 disaster. Most of

the participants in the monitoring and treatment program have medical conditions

(asthma, mental health problems, etc.) that should be responsive to medication and

other treatments. Hopefully, many of these people will gradually recover and not become disabled due to their WTC-related medical conditions. To the extent, that we

can prevent worsening of the medical conditions and prevent many of these people

from becoming too disabled to work, we can not only help these individuals, but we

can also lower the long term costs of providing care and assistance to this population.

We need Federal legislation that accomplishes the following:

• Provides long term medical monitoring program for all WTC responders and

other workers exposed in the aftermath of September 11, 2007

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• Supports long term medical treatment for those participants who have developed

WTC-related medical conditions at no cost to the participants. This program should

cover WTC-related medical conditions that are currently recognized as well as those

which might emerge in the future.

• Provides that monitoring and treatment at Medical Centers of Excellence that

have the expertise and experience to provide high quality medical care.

• Extends that high quality medical care to WTC responders from throughout the

United States

• Provides for the collection and analysis of these medical data in order to track

the health of the participants and to detect emerging disease patterns.

• Establishes a medical monitoring and treatment program for residents, students, workers, and other people who were exposed to WTC contaminants in the

aftermath to the September 11 attacks.

• Provides for appropriate compensation for those who have become disabled from

their WTC-related illnesses.

• Provides administrative mechanisms that provides prompt and timely determinations and allows the proper oversight and management of the program.

• Provides for meaningful input and participation from representatives of the affected groups in the development and management of the program.

The legislation just introduced by Representatives Maloney, Nadler, Fossella, and

others addresses all of those goals and provides the comprehensive framework needed to address the serious medical problems being experienced by thousands of people in the aftermath to the September 11 terrorist attacks. Too often in the past,

we have neglected to properly monitor the health of groups exposed in extraordinary

situations only to later spend millions of dollars trying to determine the extent to

which their health has been impacted. Agent Orange exposure in Vietnam and the

current compensation program for nuclear weapons workers are only two examples

of this problem. We have left those people to suffer, often without proper medical

care and facing financial hardship due to their illnesses. We should learn the lessons from these past mistakes and make sure that we provide comprehensive medical monitoring, treatment, and compensation for those potentially impacted by the

WTC disaster.

I would strongly urge you to take immediate steps to ensure that there is adequate Federal funding for the current medical monitoring and treatment programs

and to open up these programs or similar programs to the affected residents and

to other affected workers. I would also urge you to support the Maloney-NadlerFossella legislation to provide a comprehensive approach to give WTC workers and

residents access to long term medical monitoring and treatment for their WTC-related medical conditions and compensation for their losses.

I would be glad to answer any questions.

Mr. PALLONE. Thank you, Doctor. Mr. Skyler.

STATEMENT OF EDWARD SKYLER, DEPUTY MAYOR,

ADMINISTRATION, CITY OF NEW YORK, NY

Mr. SKYLER. Good afternoon. I want to thank you, Chairman

Pallone, Ranking Member Deal, Congressman Fossella and Congressman Weiner as well as Congressman Engel who was here earlier, and other members of the committee for convening this hearing for those who are still suffering from the effects of the September 11 attacks.

My name is Edward Skyler, and I am the New York City deputy

mayor for administration. And as the 5-year anniversary of the attacks approached, Mayor Bloomberg asked me to co-chair a panel

of experts to determine what must be done to fully address the

health impacts of 9/11. The mayor accepted all 15 of the panel’s

recommendations.

I have shared the report with your staff over the last 7 months,

and over that time, we have been working to put them into action.

In particular, the city has been working closely with New York’s

congressional delegation, especially Representatives Maloney,

85

Fossella, and Nadler; and Senators Clinton and Schumer to incorporate these recommendations into legislation that establishes a

strong and comprehensive Federal response.

And that is why I am here today. On behalf of Mayor Bloomberg

and the city of New York, I have come to express our strong support for a piece of legislation that accomplishes much of what our

panel recommended, the James Zadroga 9/11 Health and Compensation Act of 2007. The bill is named after an NYPD detective

who spent hundreds of hours at Ground Zero and later died too

young at the age of 34 from respiratory failure.

If adopted into law, it will provide the Federal funding needed

to care for those who are sick or who may become sick. The bill

would continue vital research that would help us better understand

the health impacts of these attacks, and it would reopen the Victims’ Compensation Fund, which will enable the city to get out of

the courtroom and focus its energies on helping those who continue

to struggle with the aftermath of 9/11. In short, it recognizes fully

and finally that providing health services to people who are physically injured and emotionally traumatized by an act of war and

terror against the United States is in fact a national obligation.

We have estimated that more than 400,000 people were potentially exposed to environmental hazards and psychological trauma

of the attacks. The gross national cost to treat those people who are

sick or who could become sick as a result of 9/11 is $393 million

per year. That estimate covers the entire potentially exposed population, including the thousands of rescue workers and others who

came to our city to help in our time of need from all 50 States.

We also estimate that the cost merely to sustain the current

treatment programs in the New York City area at their present

levels and to implement the remainder of the panel’s recommendations is at least $150 million a year—not allowing for inflation, increased incidence of disease, or the emergence of new disease.

The funding that this bill will provide is needed for two critical

and interrelated purposes. First, to treat those who are sick or who

could become sick as a result of 9/11. This bill provides the means

to treat anyone anywhere in the country who was affected by the

attacks. A core element of that treatment is sustained funding for

the three Centers of Excellence that collectively monitor and treat

the more than 36,000 responders, residents, and others.

Those Centers of Excellence are the FDNY World Trade Center

program, WTC Monitoring and Treatment program coordinated by

Mount Sinai, and the World Trade Center Environmental Health

Center at Bellevue Hospital, which is the only treatment program

currently open to residents and other non-first responders. I should

note the fire department recently opened a treatment center on

Staten Island in Congressman Fossella’s district to better provide

services to those who are injured as a result of the attacks and

make it more convenient for them by supplying those services in

their home borough.

Second, this bill ensures that the critical 9/11 research continues.

Long-term research is the only way we are going to be able to develop a full understanding of the health impacts of 9/11. The Centers of Excellence have all contributed to the research efforts, including studies released by clinicians at all of them.

86

The city’s health department has also partnered with the Federal

Government to establish the World Trade Center Health Registry,

the largest of its kind, which includes over 71,000 people from

every State in the country and from almost every congressional district. More than a quarter of the people in the registry, almost

20,000 individuals, are from outside New York State. This reflects

the large number of people from throughout the country who came

to New York’s assistance after the attacks.

Two large studies released last month based on registry data

continue to show how serious the health impacts of 9/11 are. They

were referred by Congressman Fossella earlier today, which is the

3.6 percent of 25,000 previously asthma-free rescue and recovery

workers who developed asthma after working at the site, which is

12 times the national average. And the 12 percent of rescue and

recovery workers, about one in eight, who developed post-traumatic

stress disorder after working at Ground Zero. The national average

is about 4 percent.

This bill will provide the necessary resources to fund all of these

services, but while we wait for Congress to act and the executive

branch to act, the city is not waiting to make sure that the people

get the health care they need. In fact, in response to the report, the

mayor increased city spending for 9/11 health-related programs sixfold to more than $27 million in the current fiscal year. And in the

absence of long-term Federal support, he committed $100 million

to these programs through fiscal year 2011.

Nevertheless, all of these programs remain in danger of being

discontinued unless they receive a full and reliable and sustained

source of Federal funding which this bill provides.

Finally, let me talk about how this bill will fulfill another core

recommendation of our panel. The urgent need for Congress to reopen the Victim Compensation Fund. Between 2001 and 2004,

under the leadership of Special Master Ken Feinburg, the fund provided compensation to nearly 3,000 families of those who were

killed or injured on 9/11 or in the immediate aftermath of the attacks. It was a fair and efficient process that provided a measure

of relief to victims’ families.

Now, it is imperative that the fund be reauthorized to take care

of those who are not eligible to benefit from it before it closed in

2003. The fact that their injuries and illnesses have been slower to

emerge should not disqualify them from getting the help they need.

Even if we provide them health care, many of these people have

suffered other losses. Some can no longer work or are in financial

distress. They shouldn’t be forced to go to court to get compensation. That not only compounds their pain, it would result in costly

and protracted litigation that is distracting us from our primary

mission of giving real help to those in need.

The fundamental point is that compensating people who were

hurt on 9/11 shouldn’t be based on a legal finding of who is to

blame. We all know who is to blame: 19 savages with box cutters.

I am here today because New York City would rather stand with

those who filed suit than against them in a courtroom, but we need

your help to do that.

There is no reason why people injured on 9/11 should now have

to go to court and prove liability. Proof of harm should be enough

87

to receive fair and fast compensation. What is more, reopening the

fund would send a clear message that if, God forbid, America suffers another terrorist attack, the private sectors and our first responders could respond with the same kind of determination that

we saw on 9/11, knowing that their Government will always stand

with them.

If we leave the issue of compensation to the courts and the tort

system, we risk bankrupting those who responded—either the individuals or the companies. We simply shouldn’t be so callous to

those who responded in the Nation’s time of need.

In sum, the James Zadroga Act represents a vital lifeline to the

men and women who risked everything and helped lift our Nation

and our city back onto its feet during its time of need. That is why

it has gained the support of New York State’s entire congressional

delegation. That is why Speaker Pelosi, who met with Mayor

Bloomberg and me last week, expressed her support of it. And that

is why Mayor Bloomberg and his administration are pledging to

work with Congress to do everything possible to make it a reality.

Thank you for your attention. I would be happy to answer any

questions you might have.

[The prepared statement of Mr. Skyler follows:]

TESTIMONY OF EDWARD SKYLER

Good morning. I want to thank Chairman Pallone, Ranking Member Deal, and

the other distinguished members of the Committee for convening this hearing about

those who are still suffering the effects of the September 11 attacks. I also want

to take this opportunity to thank Speaker Pelosi for coming to New York last week

on the eve of the sixth anniversary of the attacks. Speaker Pelosi met with Mayor

Bloomberg to discuss a number of critical 9/11-related issues, and she expressed her

support for addressing the urgent and unmet health needs that I will talk to you

about today.

My name is Ed Skyler, and as New York City’s deputy mayor for administration,

I’ve been directly involved with the city’s response to 9/11-related medical conditions. As the 5-year anniversary of the attacks approached, Mayor Bloomberg asked

me and our city’s Deputy Mayor for Health and Human Services—Linda Gibbs—

to chair a panel of experts to determine what must be done to fully address the

health impacts of 9/11.

The mayor accepted all 15 of the panel’s recommendations—I gave congressional

testimony about them in February—and over the past 7 months we’ve been working

to put them in action. In particular, the city has worked closely with New York’s

Congressional delegation—especially Representatives Maloney, Fossella, and Nadler, and Senators Clinton and Schumer—to incorporate these recommendations into

legislation that establishes a strong and comprehensive Federal response.

That’s why I’m here today. On behalf of the city, I’ve come to express our strong

support for a piece of legislation that accomplishes much of what our panel recommended, the James Zadroga 9/11 Health and Compensation Act of 2007. This bill

is named after an NYPD detective who had spent hundreds of hours at Ground

Zero, and later died at the age of 34 from respiratory failure. If adopted into law,

it would provide the Federal funding needed to care for those who are sick, or who

may become sick.

The bill would also continue vital research that will help us better understand the

health impacts of the attacks, and it would re-open the Victim’s Compensation

Fund, which will enable the city to get out of the courtroom and focus its energies

on helping those who continue to struggle with the aftermath of 9/11. In short, this

bill recognizes, fully and finally, that providing health services to people who were

physically injured and emotionally traumatized by an act of war against the United

States is in fact a national obligation.

We’ve estimated that more than 400,000 people were potentially exposed to the

environmental hazards and psychological trauma of the attacks, and that the gross

national cost to treat those who are sick or could become sick as a result of 9/11

is $393 million per year. That estimate covers the entire potentially exposed popuVerDate 11-SEP-98 15:33 Oct 06, 2008 Jkt 000000 PO 00000 Frm 00092 Fmt 6633 Sfmt 6633 Q:\DOCS\110-64 SCOM1 PsN: SCOM1
88

lation, including the thousands of rescue workers and others who came to our city

from all 50 states.

We also estimated that the cost merely to sustain the current treatment programs

in the New York City area at their present levels and to implement the remainder

of the panel’s recommendations is at least $150 million a year—not allowing for inflation, increased incidence of disease, or the emergence of new diseases.

The funding this bill would provide is needed for two critical, interrelated purposes: first, to treat those who are sick or who could become sick as a result of 9/

11. This bill provides a means to treat anyone, anywhere in the country who was

affected by the attacks. A core element of that treatment is sustained funding for

three ‘‘Centers of Excellence’’ that collectively monitor and treat more than 36,000

responders, residents and others.

Those Centers of Excellence are: the FDNY World Trade Center program; the

WTC Monitoring and Treatment program coordinated by Mt. Sinai; and the World

Trade Center Environmental Health Center at Bellevue Hospital—the only treatment program currently open to residents and other non-responders. I should note

that the Fire Department recently opened a treatment center in Staten Island—in

Congressman Fossella’s district—to provide better services to those who were injured as a result of the attacks.

Second, this bill ensures that critical 9/11-related research continues. Long-term

research is the only way that we’re going to be able to develop a full understanding

of the health impacts of 9/11. The Centers of Excellence have all contributed to research efforts—including studies released by clinicians at FDNY, Mt. Sinai and the

Bellevue program.

The city’s Health Department has also partnered with the Federal Government

to establish the World Trade Center Registry—the largest effort of its kind in history—which includes over 71,000 people from every state in the country and from

almost every Congressional district. More than a quarter of the people in the Registry—almost 20,000 individuals—are from outside New York State. This reflects

the large number of people from throughout the country who came to New York’s

assistance after the attacks.

Two large studies released last month based on Registry data continue to show

how serious the health impacts of 9/11 are. One shows that 3.6 percent of 25,000

previously asthma-free rescue and recovery workers in the Registry developed asthma after working at the World Trade Center site—12 times the national average.

And a second study shows that more than 12 percent of rescue and recovery workers—about 1 in 8—developed Post-Traumatic Stress disorder after working at

Ground Zero.

The James Zadroga 9/11 Health and Compensation Act will provide the necessary

resources to fund all of these services—but while we wait for Congress to act, the

city is not waiting to make sure that people get the health care they need. In fact,

in response to the Panel’s Report, the Mayor increased city spending for 9/11-health

related programs six-fold in the current fiscal year, to more than $27 million. And,

in the absence of long-term Federal support, he committed nearly $100 million to

these programs through FY 2011. Nevertheless, all of these programs remain in

danger of being discontinued unless they receive the full and predictable source of

Federal funding which this bill provides.

Finally, I’d like to address how this bill will fulfill another core recommendation

of our panel: the urgent need for Congress to reopen the Victim Compensation

Fund. Between 2001 and 2004, the Fund provided compensation to nearly 3,000

families of those who were killed or injured on 9/11 or in the immediate aftermath

of the attacks. It was a fair and efficient process that provided a measure of relief

to victims’ families.

Now it is imperative that the Fund be reauthorized to take care of those who were

not eligible to benefit from it before it closed in December 2003. The fact that their

injuries and illnesses have been slower to emerge should not disqualify them from

getting the help they need.

Even if we provide them health care, many of these people have suffered other

losses. Some can no longer work. Some have lost their homes. They shouldn’t be

forced to go to court to get compensation. That would not only compound their pain;

it would also result in costly and protracted litigation that ultimately would distract

us from our primary mission of giving real help to those in need.

The fundamental point is that compensating people who were hurt on 9/11

shouldn’t be based on a legal finding of who is to blame. We know who is to blame—

19 savages with box cutters. I am here today because New York City would rather

stand with those who’ve filed suit, rather than against them in a courtroom. There

is no reason why people injured on 9/11 should now have to go to court and prove

liability. Proof of harm should be enough to receive fair and fast compensation.

89

What’s more, reopening the Fund would send a clear message that if—God forbid—America suffers another terrorist attack, the private sector and our first responders could respond with the same kind of determination that we saw on 9/11,

knowing that their government will always stand by them. If we leave the issue of

compensation to the courts and the tort system, we risk bankrupting those who responded—either the individuals or the companies. We simply shouldn’t be so callous

to those who responded in the nation’s time of need.

In sum, the James Zadroga Act represents a vital lifeline to the men and women

who risked everything, and helped lift our Nation back onto its feet during our time

of greatest need. That’s why Mayor Bloomberg and his administration are pledging

to work with you all and do everything possible to make it a reality.

Mr. PALLONE. Thank you. I thank you all. I am going to start

with the questioning.

My view, and I think most of you, if not everyone here, sort of

shared the same view, although I don’t want to put words in your

mouth, is that if we had a situation where every one of the first

responders, or even those who were not first responders that might

have been victims because they live or work near the World Trade

Center—but at least let us focus on the first responders, if we had

a system where all the first responders could go to a specialized

treatment center, where they have the expertise like what UMDNJ

or Mount Sinai do, and they could be screened and monitored, and

they could be treated there by those experts who have the expertise, and the Government was paying for it because there wouldn’t

be any gaps because of your private insurance, if you have it or

don’t, that would be the best situation.

But the problem with that, of course, is that for ideological reasons or whatever, our system doesn’t work that way. Everything is

done stop-gap, and you have to rely on private insurance and who

has and who hasn’t. So if we set something up like that, although

it might be the ideal—there are all the ideological problems that

go with it. So what I would like to know is how far do you think

we need to go?

In other words, we obviously need a comprehensive plan. Would

you argue that this comprehensive plan should allow everyone who

is either a first responder or a victim in some other way to go to

one of these centers? That they should be fully covered by the Federal Government without any recourse to private insurance? Is

there any other way to help people like Mr. Vinciguerra without

having to go that far?

I mean, this is the committee of jurisdiction that would have to

report out that legislation, and we have some bills out there that

are sort of similar to that. But we also have to think about what

is possible to get passed here.

And so I guess I would just like to ask a basic question about

is that the way we need to go? Is there some way to continue to

rely on private insurance, or let people go to their individual doctors, or is this really what we are talking about? And I know it is

sort of a broad question. I am not sure we have time for everybody

to answer it, but I would like to at least ask that of Dr. Udasin,

Dr. Herbert and the GAO person in that order and then we will

see. If we can start that way.

Dr. UDASIN. Well, I would like to answer that question by saying

that most of the patients in New Jersey actually have private

health insurance, and so many came in with either incorrect diagVerDate 11-SEP-98 15:33 Oct 06, 2008 Jkt 000000 PO 00000 Frm 00094 Fmt 6633 Sfmt 6633 Q:\DOCS\110-64 SCOM1 PsN: SCOM1
90

noses or they couldn’t get the medications that they needed because the insurance company said you had to have this medication,

not the one that actually works for what is wrong with you. I am

no expert on figuring out how to fund a program, but I feel like

the people that were there that did the kind of work that Mr.

Vinciguerra did need the kind of medical care that we are able to

provide for them.

Mr. PALLONE. And if they can’t go to your center, then there is

a danger that they won’t get the specialty care, correct?

Dr. UDASIN. That is correct, and we do work with physicians all

over the—actually we work with physicians all over the country.

And we do give a lot of medical advice to people who can’t get into

our centers, and at the very least, it is making the diagnosis that

is so complicated that takes such a long time figuring out what

people need. And that is actually where the trouble is, in my opinion, that a lot of people that do have correct health insurance are

coming in with the wrong diagnosis. And that is what I feel like

we can do for them is at least get them started on the path to the

correct treatment.

Mr. PALLONE. See, that is, Dr. Herbert, my concern is that if you

look at Mr. Vinciguerra, he went to Hamilton. Did they necessarily

know what the problem was? It seems to me that if they are not

going to one of your centers and then they are not being able to

get the full monitoring and treatment over a long period of time

under somebody that has the expertise, they are going to have incomplete care. And, then you get into all the insurance problems.

Dr. HERBERT. I agree exactly with what you said and with what

Dr. Udasin said. The other features of this kind of system are the

ability to track symptoms, physical findings, breathing test results

from the monitoring examination so that we can identify disease

and symptom patterns over time, A. And, B, in the treatment programs, we have a real-time system to capture not just the single

billable diagnosis that you are going to find from a private physician but all of the conditions for which that responder is being

treated.

So I think without this kind of center, A, you would lose the ability to provide the highly specialized treatment that the responders

need. And, B, you would lose the opportunity to identify the patterns of disease going forward in time, and you would lose the responders as a group. And that would be a huge loss.

Mr. PALLONE. And I will ask Dr. Melius because my time is actually up, but the problem that I see is that when you talk about the

insurance, unless the Government is actually saying we are going

to pay for your screening and treatment at one of these centers,

there is going to be just a gap. There is no way for private insurance to make up the difference. Or is there some way for us to still

rely on private insurance to pay for some of this?

Dr. MELIUS. The answer to that is twofold. One is I don’t think

it is fair or appropriate to rely on private insurance because that

cost is getting then passed back either to the victim or his fellow

workers who are part of the same plan or to the employer who is

having to provide that.

Second, I don’t think it works. It leads to fragmented care. Mr.

Vinciguerra, I think, was a good example of the problems that that

91

causes. And there are countless other examples like that in this

program. People that delay treatment, don’t get the right medications, uncertainty about whether it is covered or not.

And I really think the only way to provide timely comprehensive

care is to do it through the system that is proposed in the legislation, that sets up the Centers of Excellence, that tracks people, provides the care at Centers of Excellence or in coordination with Centers of Excellence, and assures that people get the best care as

early and in as timely a fashion as possible.

Mr. PALLONE. And I agree with you, but I mean the problem is

when you try to move a bill like that, you are basically saying you

want a Government sponsored plan, paid-for plan for these people.

And the question is can we accomplish that.

Dr. MELIUS. Well, this is, I think, extraordinary circumstances.

Mr. PALLONE. Right, thank you.

Dr. MELIUS. Yes.

Mr. PALLONE. Mr. Deal.

Mr. DEAL. I would sort of like to follow up on that. Does anybody

know how many of these responders have been provided care and

benefits under their Worker’s Compensation plans? Yes, Mr.

Skyler?

Mr. SKYLER. I would just point out from the city’s perspective,

worker’s comp actually doesn’t apply to members of the uniform

service, such as police department and fire department. So, as a

matter of course, the 50,000 or so police officers and firefighters

wouldn’t get any care through their worker’s comp system.

Mr. DEAL. So you don’t have any worker’s comp system for your

uniformed officers?

Mr. SKYLER. Not for our uniformed officers. It only affects the civilian cohort of the workforce.

Mr. DEAL. So what benefits do they have then if they are injured

in the line of duty?

Mr. SKYLER. They have different benefits provided by pension

plans, and there are different levels of care depending on the agency. For example, the Bureau of Health Services was a part of the

fire department set up before 9/11 that monitored firefighter health

before 9/11. They used their data to compare against the patients

that came in after 9/11.

Mr. DEAL. So that is why Mr. Vinciguerra had such a hard time

is because the normal processes that would be in place in most instances that I am aware of across the country, apparently you

didn’t have those for a uniformed person injured in the line of

duty?

Mr. SKYLER. No, I would submit and I think the doctors on the

panel would agree that the fire department Bureau of Health Services is one of the Centers of Excellence that has gotten Federal

funding that we want to see funding continued for. The advantage——

Mr. DEAL. Well, I know you wanted the Federal Government to

pick up the tab. My concern is when you have got local folks who

should be covered by some kind of local policy, why is not that the

first line of resources?

92

Mr. SKYLER. Well, it has been the first line, and the mayor put

up money despite a lack of Federal long-term commitment on this

issue—$100 million over the next 3 years.

Mr. DEAL. If a fireman is injured in my hometown, he is covered

by an insurance policy. He has got a retirement benefit plan. Why

does a man like this gentleman here have such difficulty in New

York?

Mr. SKYLER. I believe Mr. Vinciguerra actually has been treated

by our Bureau of Health Services. One of the gaps that was exposed was a lack of prescription drug care, which we have remedied since the panel’s report came out.

Mr. DEAL. Mr. Vinciguerra?

Mr. VINCIGUERRA. Yes, if I may, the reason I think there is some

confusion is I worked for the EMS division of the fire department,

and it is sort of considered a civilian component even though it is

a uniformed service now. It works under compensation, not the

pension component.

Mr. SKYLER. Well, Dr. Melius’s testimony here says that depending on a Worker’s Compensation disability retirement system to

cover the medical cost for the monitoring and treatment programs,

placed a financial burden on the employers and the insurance companies.

Mr. DEAL. Well, yes, that is true. Any time you write an insurance policy or create a system, when you have a claim that comes

forward, whether they be of the magnitude we are talking about

here or even minor claims that same statement could be true. Let

me ask specifically about how we are spending money.

Ms. Bascetta, in your testimony, I am looking at the portion

where you talk about the contracts that NIOSH has entered into

for those outside of the metropolitan area. And you say in June

2005, they began a second effort by awarding $776,000 to Mount

Sinai School of Medicine to provide screening and monitoring for

non-Federal responders residing outside the metropolitan area.

And then in June 2006, they awarded an additional $788,000 to

provide screening for these first responders. And you conclude the

paragraph by saying that they ultimately contracted with 10 clinics

in seven States and that as of June 2007, 10 clinics were monitoring 180 responders. That is an awful lot of money for a very few

people. Am I reading this wrong?

Ms. BASCETTA. No, you are correct. The system wasn’t working

well at all, and in fact to update that, NIOSH has gone to a different system with a different contract with QTC, I believe. Dr.

Howard referred to that, and they have piloted it. They have done

about 20 exams under that program, but the first program did not

work well at all.

Mr. DEAL. OK. Well, let us go to more recent. You say here in

June 2007, NIOSH awarded $800,600 for DCC to coordinate provisions of screening and monitoring exams, to provide 1,000

screenings and monitoring examinations through May 2008. And

they began the screening process, and by the end of August, 18

non-Federal responders had completed screening and 33 others had

been scheduled. Here again, that appears to be a lot of Federal dollars for a very few people that are being affected by it. I mean we

93

would be better off to take that amount of money and give all those

people that amount of money in cash, wouldn’t we?

Ms. BASCETTA. It is a very good question. Again that is the same

program that you were just referring to. The money was there, but

the administrative logistics were not in place to serve the people

well. And it didn’t happen.

Mr. DEAL. And yet we are going to be anticipating the same kind

of funding or even at greater levels for this fiscal year, are we not?

Ms. BASCETTA. Yes, but those funds were for screening and monitoring, and the discussion that we were just having was about

treatment, which is actually where even more of the funds would

be required. The screening and monitoring are a smaller proportion, and they are known costs. Once you get the mechanisms in

place to do the screening and monitoring, then you know per person what that is going to run.

Mr. DEAL. But using that same logic, if the cost per person just

to do the screening and monitoring is so exorbitant and out of kilter it seems to me, then we would expect the treatment phase of

it to be even more exorbitant, would we not? I mean why is it costing so much to do so little for so few?

Ms. BASCETTA. Well, I don’t think we know at this point what

the full treatments costs are going to be. One of our findings was

that HHS has just last year begun asking for the actual cost data

from the grantees. Last year was also the first year that there was

Federal money awarded to grantees, and prior to that, it was all

philanthropic funds from the Red Cross. So there wasn’t a requirement for the grantees to be reporting actual cost data.

We would hope that one of the lessons learned from this situation is that in the future the requirements for screening and monitoring, who is responsible for that, where the funding streams will

come from, how those programs will be administered, and how the

various funding streams for treatment would be made available to

pay for treatment if that were necessary, would be planned in advance to avoid this kind of situation after the fact.

Mr. DEAL. Well, I don’t mean to diminish the importance of what

we are all talking about here by my questions, but I do think that

we can’t just simply all say take a simplistic answer of let the Federal tax payer pick up the burden. Let us forget about asking the

private insurers to contribute. They have been paid premiums for

that, but it is too cumbersome to do that. Let us forget about the

Worker’s Compensation system because it takes too long to go

through system.

I can assure you that every injured employee in this country who

has a Worker’s Compensation claim would tell you yes, the system

does take a while. But just to say let us forget about that and

throw up our hands and ask the Federal Government to pitch in

millions, perhaps billions of dollars, I think, doesn’t show the kind

of responsibility that I think all of these responders showed when

the responded to the emergency before them.

I think there is a responsibility at every level for us to make sure

that we are doing what is best for the people who need the help

and that we are not just throwing dollars out there that don’t seem

to wind up in the right place. That is the concern that I have.

Mr. PALLONE. Mr. Engel.

94

Mr. ENGEL. Thank you, Mr. Chairman. Let me just say before I

ask my question in view of some of the comments that my friend

Mr. Deal has been making. The President talks a lot about America being attacked on 9/11 and talks a lot about it being as part

of the overall fight on terror. He mentions Iraq and everything else

and that the United States of America was attacked.

Well, we in New York don’t believe that we were attacked simply

by random. New York was obviously a symbol of the country, and

the terrorists wanted to hit us hard. Therefore, we believe that the

Federal Government has an enormous responsibility above and beyond. It is not just simply worker’s comp or private insurance

plans.

Sure, it would be helpful, but the bottom line for me is that the

Federal Government needs to be responsible. We were attacked.

New Yorkers were killed and maimed and injured, and the Federal

Government needs to have a response. And I think pushing it off

on private companies or whatever—and I am not trying to absolve

them of responsibility, but the bottom line for me is again that the

Federal Government needs to step in.

Mr. Skyler, let me just ask you. I don’t know if you were here

when I gave my opening statement, but I talked a lot not only

about first responders but about other New Yorkers and people

from the metropolitan area who were exposed to these poison toxins, people who live within the area, residents, students. These people who were exposed to the toxins of Ground Zero are not eligible

for the federally funded World Trade Center Medical Monitoring

and Treatment programs.

We have just introduced a bill lead by Mrs. Maloney, Mr.

Fossella, Mr. Nadler, but many of us also co-sponsored and signed

on, which would help the entire exposed community. I am wondering if you could give us some of your insights on how that bill

would help and why it is so necessary.

Mr. SKYLER. Absolutely, and I think the bill addresses one of the

fundamental challenges, also something that Congressman Deal essentially stated, which is that we have different populations, and

we have different systems that handle different populations. But

we have the same health effects caused by the same disaster, an

environmental disaster, and I am not aware of one on American

soil that was greater than this one. It is an environmental disaster,

not just a terrorist attack.

But we have populations where different standards apply depending on what their pension benefits are, depending whether

they are on worker’s comp or not, depending on what union they

are in sometimes, depending on what resources that union has

available, depending on where they live.

So one of the things that the report recommended was to establish an enhanced funding for a World Trade Center environmental

health center in Bellevue Hospital. It is a hospital in New York

City, Manhattan, that anybody can go to, whether you are a resident—and there was no treatment program available for residents

before this was established—whether you are a firefighter or police

officer, whether you are a worker, whether you worked in the

cleanup as a contractor or whether you worked in the building

cleaning up the interior of a building that was damaged.

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Anybody can walk in there and get care, and we have had about

1,600 people go in. And that is a gap that needs to be filled. There

are other gaps throughout the populations that we have also

sought to fill, but that was a huge one that nobody had focused on.

And we are gratified to see that Congresswoman Maloney’s bill, the

Zadroga Act, which I am here to support, actually identifies that

population as one deserving funding.

Mr. ENGEL. Thank you. I think that is very important. Dr. Herbert, let me ask you something specifically about the Mount Sinai

program. Many of the responders who are now in medical monitoring programs, these are run by their employer, the fire department

or the police department. And a lot of the problems are mental

health related, and due to the presence of these issues among the

population, might it not be possible that some of these workers fear

sharing this information with their employer due to potential adverse work consequences and things like that?

Now, let me ask you about the Mount Sinai program. Should you

be assisting in helping in monitoring those employees who may be

uncomfortable with being monitored by their employer?

Dr. HERBERT. Thank you for asking that question. To clarify with

respect to the two federally funded monitoring and treatment programs for responders, distinct from the additional program that

Mr. Skyler spoke about, one is employer based, the program for

New York firefighters or employees of FDNY is based at the Bureau of Health Services.

The other federally funded program does exactly what you have

suggested might be important. The way the program works is that

we have exposure-based eligibility criteria. Any responder can

choose the Center of Excellence that he or she prefers to go to, and

the examinations are highly confidential. We are very well aware

that we are collecting very sensitive information. We adhere to all

pertinent HIPA regulations. So, in fact, I think it is very important, and it is one of the reasons that I believe—we have had enormous success in combining mental health screening and treatment

with physical health screening and treatment in a group of workers

who probably would not seek mental health care.

Mr. ENGEL. Let me ask you this. You have your program, the fire

department’s medical monitoring program, the World Trade Center

Health Registry, the World Trade Center responders, Fatality and

Investigation program, and Project Cope to name a few. All these

programs seem to be working within their own silos. Are there any

plans to merge data, save resources, share expertise, to examine

the overall health effects related to the World Trade Center rather

than just limited populations?

Dr. HERBERT. Yes, indeed there is, and we think that is very important. Presently, the New York/New Jersey consortium group of

clinical centers and the FDNY programs use virtually identical

questionnaires for the follow-up visits and the monitoring program.

Because of a number of privacy issues, it is sometimes difficult

to actually have the same data systems, but we are collecting virtually identical data. And so we will be able to compare the experiences of different groups of responders, and that is essential.

We, in the Mount Sinai consortium, and Dr. Prazant at the

FDNY program are also working very closely both with the World

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Trade Center registry and with the New York State fatality investigation. So we agree that it is critical that resources be used in

as prudent as possible so there is not redundancy.

Mr. ENGEL. Thank you. Thank you, Mr. Chairman.

Mr. PALLONE. Mr. Fossella.

Mr. FOSSELLA. Thank you, Mr. Chairman. I thank the panel

again for your testimony, particularly Deputy Mayor Skyler. And

this gets back to the overarching issue of the city of New York has

stepped in to fill this breach, and many of us feel that it should

have been the Federal Government stepping in immediately to help

fill the breach. And the panel is consisting of people who have had

to deal with the first responders and others, Mr. Vinciguerra from

day one. And I used it before Dr. Howard as we are waiting for the

cavalry.

And there are some legitimate concerns, I guess, one could point

to if they are looking in after the fact and say where are the problems? And I think we have a responsibility to ask those questions

to make improvements. But if I believe the Federal Government

was up front early on, perhaps we could avoid asking those questions today because we would have had them at the table.

If I am not mistaken, with respect to some of the issues that

have been raised, for example, workman’s comp is designed

through actuarial tables and doesn’t necessarily take into account

the scope and size of this catastrophe, the thousands and tens of

thousands. 400,000 people thought to be affected would be one of

the largest cities in this country, larger than the population of Minneapolis is, for example, people who have been affected by this.

So the system design does not, I think, take into account that

radical number. And, in fact, some of the money we secured last

year was helping the workman’s compensation system facilitate

and minimize the delays of those who partitioned the program.

Second, this is not totally unwarranted or unprecedented. After

Pearl Harbor, there were programs that were put in place to help

sailors who were called in to respond and came down with certain

illnesses. So the Federal Government recognizing, although it took

place in Hawaii, that this was a national catastrophe and demanded national scope.

Similarly, we can make that argument that flood insurance

should be held by everybody or homeowner’s insurance. But we

know that major hurricanes, tornadoes, fires, other, FEMA steps in

some way, shape, or form to help people through that system.

And finally there are those, we have noticed—and I would like

to ask the deputy mayor for maybe expounding a little bit on this—

we kept emphasizing that although it took place in New York City,

this is a national problem in scope. You mention that there are

20,000 people who don’t even live in New York City, again this

would be larger than many towns and cities and villages across

this country, 20,000 people.

So if you were a firefighter from Hialeah, FL, as Mr. Pallone

said, or came in from New Orleans or California, and then went

back to work and now suffering, common sense would dictate that

that individual would show the similar signs of ailments and illnesses and manifestations of those diseases, let us say, or illnesses

as someone who lives in New Jersey or Staten Island, New York.

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And yet that person is probably on his own right now, and we don’t

even know whether that person becomes eligible for satisfaction

under workman’s comp.

So, Deputy Mayor Skyler, can you expand or illuminate, elaborate if you will, on the number who do not live within New York

City?

Mr. SKYLER. The World Trade Center registry, through their

modeling, estimated—and a lot of what we deal with in this subject

is estimates—there are 410,000 people that qualified for the World

Trade Center Health Registry, and that is based on where they

lived, where they worked, where they were that day. We estimate

that of those 410,000, 45,000 of them live outside not only New

York State but New Jersey, which I believe has the second most

members in the registry.

Of the 410,000 that we estimate, we had over 71,000 people

signed up, we believe, of the 410,000 that qualified. And about

10,000 of them live outside New York and New Jersey. And at least

one of them lives in Congressman Deal’s district in Georgia. There

is literally at least one person in almost every congressional district

in the country.

So it is absolutely a national problem, and it is not just because

New York was attacked because of its symbolism, because it is the

financial and media center of the country. But people come to New

York. Sometimes they live in New Jersey. Sometimes they live in

Connecticut. Sometimes they are there for the day. Sometimes they

are working there for a couple months or visiting.

We have a population that is, to some extent, always changing,

and people relocate. And we also had a great amount of people that

came from all over the country to help when we needed. And this

is a recovery that just wasn’t a couple of days or weeks. It was

months.

So we believe that the Federal Government has a responsibility

to help the city take care of its own. The city has stepped up. The

city takes care of its firefighters. We take care of our police officers.

We have done the best we can. What we are asking for is some

Federal assistance so we have the long-term funding in place not

only to maintain the great levels of care that we have established

in our centers of excellence, but make sure that people that aren’t

parts of those populations also get the care they need.

If you were hurt because of 9/11, it shouldn’t be just because you

worked for the city or responded. If you were hurt because you

lived across the street and breathed in the air potentially, then you

also should be deserving the same assistance. And we have been

hard at work. Since this panel report came out, there is only, I believe, two or three of the 15 recommendations that fall outside of

the city. They are essentially requests for the Federal Government

to help.

One is the Victims’ Compensation Fund, which I mentioned before, that Speaker Pelosi voiced her support for earlier. I am not

sure whether she supports the whole James Zadroga Act. I would

refer you to her office, but she voiced support for the Victims’ Compensation Fund.

The second is getting long-term funding from the Federal Government. The rest of the report was the city government taking a

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hard look at itself and saying it wasn’t doing a good enough job explaining to the city workers what resources were available, coordinating services, encouraging people to get checkups, establishing

communications within city government, and establishing protocols

so that we have emergencies that have environmental impacts,

whether it is Deutsche Bank building or the steam pipe explosion,

that we have environmental professionals on scene that can help

guide the emergency response.

So we have tried to learn from this disaster and do what we can

do to improve our response. But what we are also saying is we are

in need of a Federal commitment so that the people that were hurt

don’t have their care jeopardized by the fiscal stability or health of

New York City. In tough times, programs get cut back.

We would like to see an established program, a sustained commitment, so that people that were hurt continue to get the care

they need. It is possible that some of these illnesses—doctors could

speak better than I could—will improve over time. It is also possible that things will get worse. We don’t know. There are a lot of

illnesses that we would not have a sense at this point of whether

they will materialize. And we are talking about hundreds of thousands of people here, and it is unlike something that the country

has ever experienced. And it is impossible for the health insurance

mechanism, as set up now, to absorb it and care for it properly.

Mr. FOSSELLA. Thank you, Mr. Skyler. Thank you, Mr. Chairman.

Mr. PALLONE. Sure. I have to apologize to Mr. Weiner because

he was supposed to go next because Mr. Fossella is not on the subcommittee. I apologize. Your turn.

Mr. WEINER. Well, I am gratified then that Mr. Fossella did such

a good job in his time. I thank you, Mr. Chairman. I think that it

is very important that we address fully Mr. Deal’s concerns because

we want this effort to be one that is bipartisan. There are a lot of

people who are not living with these issues day to day like we are

who perhaps don’t understand the nuance and raise similar questions.

And perhaps, Mr. Skyler, you can expand a little bit on this notion that the programs that have been set up for the fire department, for example, take a State program, the disability insurance

program, and say we as New York City residents, we are going to

do even better. We are going to provide them even better care. We

are going to step in and provide better care.

I don’t think that the failure of the fire fighters to go through the

disability program is any way the shirking of New York City’s responsibility. It is taking on in addition. I just want to make sure

that is clear for the record.

Mr. SKYLER. Right, the level of care provided by the Bureau of

Health Services, the fire department, is the gold standard. And if

we can provide every person that was affected by these attacks

with that level of care, we would be in a lot better shape than we

are currently.

Mr. WEINER. And I think it is also worth noting one of the tools

that many of the medical community have to determine what is

going on is the monitoring that went on of firefighters long before

September 11 that allow people to look at healthy 20-year-old lungs

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and 23-year-old lungs that look like they should be on a 70-yearold person. That is one of the reasons that that is available.

I think it is also important that we understand that what we are

suggesting here is exactly what Congress—and I don’t know the

record of my colleagues on the committee or Mr. Deal—I know Mr.

Fossella and Mr. Engel’s on this. We looked at a very similar problem when we created the Victim’s Compensation Fund. We said

well, how do we deal with what could be long-term lawsuits that

go on ad infinitum. How do we deal with a community that has so

many victims coming from so many places? How do you deal with

them expeditiously, compassionately? How do we deal with this

when the Victims’ Compensation Fund was created?

And with that in mind, I just want to ask—and I will just go one

by one on the panel—is there any doubt based on either your experience, your friendships with other people, your research that you

write, is there any doubt in your mind—I will go from left to

right—that people today are dying from 9/11-related illnesses? Why

don’t we start to the left, just a quick yes no. Is there any doubt

in your mind?

Mr. VINCIGUERRA. Yes, people are dying.

Mr. WEINER. Doctor?

Dr. UDASIN. Yes.

Dr. HERBERT. I agree with Dr. Udasin.

Ms. BASCETTA. There is a large part of peer-reviewed literature

that documents the health effects.

Mr. WEINER. Doctor?

Dr. MELIUS. Yes, absolutely.

Mr. WEINER. Mr. Skyler?

Mr. SKYLER. I am not a doctor, but clearly there is tremendous

amount of harm that was caused by the attacks.

Mr. WEINER. And the Victims’ Compensation Fund was created

for people who died from the attacks. So the only question is

Congress’s instinct and Congress’s desire to try to figure who the

universe of people is, set up rules and parameters, and then go out

and take care of them. The only thing that the city is asking is that

the one parameter, December 2003, be changed. And that we know

now that there is a whole universe of people who themselves didn’t

know that they were dying from September 11 related diseases and

figuring out the correct place to place that December 2003 date.

We are asking essentially—what the city is asking, what residents are asking us to do—and what the residents of 40 or so

States or all 50 States who are asking who are in this additional

group, to do what all of us voted for. And at the time, those 2,800

or so that were in the known class of people that had died at the

time, they had insurance. They had lawyers. They had someone to

sue. They had a lot of people to sue, and we made a decision, you

know what, it is probably better for everyone involved that rather

than fighting in the courts for perhaps the better part of a generation over this, let us figure out what our responsible role is. And

it had broad bipartisan support in its institution.

And I should say something else. If the Federal Government says

no, Congress says no, we are not going to do any of these things

we are going to do what we can. All of the people who are here testifying are going to keep doing their good work. We are going to

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keep advocating. We are going to do what we can to embrace one

another. We are going to try to figure out a way to take care of

these people.

The question is: Is this the best way to care for people who are

dying because of their heroism or their simple presence on September 11 at a certain place? Is that the way we want to respond as

a Congress and as a people? Up to now, the American people,

through their Congress, have said no, we don’t believe that we

want to respond. And we let people kind of go fend for themselves.

If they are fortunate enough to have good insurance or to have

been further away from the plume or to be a firefighter that has

good monitoring, if that is where—Congress could wind up being

there.

But I want to make it clear that what we are suggesting here

and what sponsors of the bill are suggesting and what Mayor

Bloomberg is suggesting is not this cosmically different way of looking at the problem. It is the same way that Mr. Deal and I and

others in this Congress looked at it after September 11. We were

attacked. Let us figure out a smart, compassionate, comprehensive

way to deal with it.

We are not rewriting everything here. We are not reinventing the

wheel with this legislation. The mayor’s desire to reopen the compensation fund, all of our desire to do that, is trying to figure out

a way—and let me just end—I know I am a little bit over time.

If you are concerned, as I know so many of my colleagues are

about the courts being clogged up with lawsuits and that us using

the courts as the way we solve even the most basic disagreement

about interpretations—and I know many of my colleagues on the

judiciary committee have that feeling. Well, the Victims’ Compensation Fund is a way, in the words of Mr. Skyler, to get us

working together rather than fighting one another.

It would be a shame if we are all sitting here in 10 years talking

about and reading about the horrible lawsuits going on as families

sue the city of New York which desperately wants to try to provide

help. And I think the questions that Mr. Deal asked are exactly the

right ones, and that we have to embark on trying to explain to people what we are doing here is not transformative. It is just tweaking a system that we have already created.

The city has taken on an enormous amount of responsibility.

Whoever the next mayor is is going to have to deal with those responsibilities as well, but it is imperative that we, the Federal Government, take this opportunity to continue the job that we began.

And I want to commend Mr. Fossella and Ms. Maloney, Mr. Nadler, Mr. Engel, and the chairman, Mr. Pallone, for helping us get

to that place and for all of you for testifying here.

Mr. PALLONE. Thank you. Let me say before we conclude that

this was just a beginning. This was not a legislative hearing per

se. I mean we didn’t have a piece of legislation before us, but it is

my intention, and I think I can hear that there is a bipartisan concern that the current system is broken in terms of handling the

health concerns of both first responders as well as other people

that may have been impacted because they lived or worked in the

vicinity of the World Trade Center.

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So it is our intention to follow up on this and come up with some

legislative initiative. But I think you can all see that even though,

on a bipartisan basis, we realize that the status quo doesn’t work

as well as we would like, that it is difficult to figure out exactly

how to put something together.

So we are probably going to rely on all of you and follow up with

phone calls and other things to help us out as we proceed, but we

do intend to try to put something together legislatively.

And let me just say also that the Members, as always, can submit additional questions for the record to be answered by all of you.

The questions should be submitted to the clerk within the next 10

days, and then we would notify you about those questions. So you

may get some follow up in that respect.

And without objection, this meeting of the subcommittee is adjourned. Thank you all.

[Whereupon, at 1:30 p.m., the subcommittee was adjourned.]

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