[House Hearing, 114 Congress]
[From the U.S. Government Publishing Office]
EXAMINING H.R. 1786, THE JAMES ZADROGA 9/11 HEALTH AND COMPENSATION
REAUTHORIZATION ACT
=======================================================================
HEARING
BEFORE THE
SUBCOMMITTEE ON HEALTH
OF THE
COMMITTEE ON ENERGY AND COMMERCE
HOUSE OF REPRESENTATIVES
ONE HUNDRED FOURTEENTH CONGRESS
FIRST SESSION
__________
JUNE 11, 2015
__________
Serial No. 114-52
[GRAPHIC NOT AVAILABLE IN TIFF FORMAT]
Printed for the use of the Committee on Energy and Commerce
energycommerce.house.gov
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COMMITTEE ON ENERGY AND COMMERCE
FRED UPTON, Michigan
Chairman
JOE BARTON, Texas FRANK PALLONE, Jr., New Jersey
Chairman Emeritus Ranking Member
ED WHITFIELD, Kentucky BOBBY L. RUSH, Illinois
JOHN SHIMKUS, Illinois ANNA G. ESHOO, California
JOSEPH R. PITTS, Pennsylvania ELIOT L. ENGEL, New York
GREG WALDEN, Oregon GENE GREEN, Texas
TIM MURPHY, Pennsylvania DIANA DeGETTE, Colorado
MICHAEL C. BURGESS, Texas LOIS CAPPS, California
MARSHA BLACKBURN, Tennessee MICHAEL F. DOYLE, Pennsylvania
Vice Chairman JANICE D. SCHAKOWSKY, Illinois
STEVE SCALISE, Louisiana G.K. BUTTERFIELD, North Carolina
ROBERT E. LATTA, Ohio DORIS O. MATSUI, California
CATHY McMORRIS RODGERS, Washington KATHY CASTOR, Florida
GREGG HARPER, Mississippi JOHN P. SARBANES, Maryland
LEONARD LANCE, New Jersey JERRY McNERNEY, California
BRETT GUTHRIE, Kentucky PETER WELCH, Vermont
PETE OLSON, Texas BEN RAY LUJAN, New Mexico
DAVID B. McKINLEY, West Virginia PAUL TONKO, New York
MIKE POMPEO, Kansas JOHN A. YARMUTH, Kentucky
ADAM KINZINGER, Illinois YVETTE D. CLARKE, New York
H. MORGAN GRIFFITH, Virginia DAVID LOEBSACK, Iowa
GUS M. BILIRAKIS, Florida KURT SCHRADER, Oregon
BILL JOHNSON, Ohio JOSEPH P. KENNEDY, III,
BILLY LONG, Missouri Massachusetts
RENEE L. ELLMERS, North Carolina TONY CARDENAS, California
LARRY BUCSHON, Indiana
BILL FLORES, Texas
SUSAN W. BROOKS, Indiana
MARKWAYNE MULLIN, Oklahoma
RICHARD HUDSON, North Carolina
CHRIS COLLINS, New York
KEVIN CRAMER, North Dakota
Subcommittee on Health
JOSEPH R. PITTS, Pennsylvania
Chairman
BRETT GUTHRIE, Kentucky GENE GREEN, Texas
Vice Chairman Ranking Member
ED WHITFIELD, Kentucky ELIOT L. ENGEL, New York
JOHN SHIMKUS, Illinois LOIS CAPPS, California
TIM MURPHY, Pennsylvania JANICE D. SCHAKOWSKY, Illinois
MICHAEL C. BURGESS, Texas G.K. BUTTERFIELD, North Carolina
MARSHA BLACKBURN, Tennessee KATHY CASTOR, Florida
CATHY McMORRIS RODGERS, Washington JOHN P. SARBANES, Maryland
LEONARD LANCE, New Jersey DORIS O. MATSUI, California
H. MORGAN GRIFFITH, Virginia BEN RAY LUJAN, New Mexico
GUS M. BILIRAKIS, Florida KURT SCHRADER, Oregon
BILLY LONG, Missouri JOSEPH P. KENNEDY, III,
RENEE L. ELLMERS, North Carolina Massachusetts
LARRY BUCSHON, Indiana TONY CARDENAS, California
SUSAN W. BROOKS, Indiana FRANK PALLONE, Jr., New Jersey (ex
CHRIS COLLINS, New York officio)
JOE BARTON, Texas
FRED UPTON, Michigan (ex officio)
(ii)
C O N T E N T S
----------
Page
Hon. Joseph R. Pitts, a Representative in Congress from the
Commonwealth of Pennsylvania, opening statement................ 1
Prepared statement........................................... 2
Hon. Gene Green, a Representative in Congress from the State of
Texas, opening statement....................................... 4
Prepared statement........................................... 5
Hon. Fred Upton, a Representative in Congress from the State of
Michigan, opening statement.................................... 6
Prepared statement........................................... 7
Hon. Frank Pallone, Jr., a Representative in Congress from the
State of New Jersey, opening statement......................... 8
Prepared statement........................................... 10
Witnesses
John Howard, M.D., Director, National Institute for Occupational
Safety and Health.............................................. 11
Prepared statement........................................... 13
Answers to submitted questions \1\........................... 101
Iris G. Udasin, M.D., Director, Environmental and Occupational
Health Sciences Institute, Robert Wood Johnson Medical School.. 39
Prepared statement........................................... 42
David G. Howley, Retired Police Officer, New York City Police
Department..................................................... 48
Prepared statement........................................... 49
Barbara Burnette, Former Detective, New York City Police
Department..................................................... 54
Prepared statement........................................... 56
Submitted Material
H.R. 1786, the James Zadroga 9/11 Health and Compensation
Reauthorization Act, submitted by Mr. Pitts.................... 68
Statement of Hon. Peter T. King, a Representative in Congress
from the State of New York, submitted by Mr. Pitts............. 79
Statement of Harold A. Schaitberger, General President,
InterNational Association of Fire Fighters, June 11, 2015,
submitted by Mr. Pitts......................................... 80
Statement of Ed Mullins, President, Sergeants Benevolent
Association of the New York City Police Department, June 11,
2015, submitted by Mr. Pitts................................... 82
Letter of June 9, 2015, from William J. Johnson, Executive
Director, National Association of Police Organizations, Inc.,
to Mr. Pitts and Mr. Green, submitted by Mr. Pitts............. 91
Article, ``The Forgotten Victims,'' PBA Magazine, submitted by
Mr. Pitts...................................................... 93
Statement of Hon. Daniel M. Donovan, Jr., a Representative in
Congress from the State of New York, submitted by Mr. Lance.... 96
Letter of June 11, 2015, from Mr. Lance, et al., to House Speaker
John A. Boehner and Minority Leader Nancy Pelosi, submitted by
Mr. Lance...................................................... 97
----------
\1\ Dr. Howard did not answer submitted questions for the record
by the time of printing.
EXAMINING H.R. 1786, THE JAMES ZADROGA 9/11 HEALTH AND COMPENSATION
REAUTHORIZATION ACT
----------
THURSDAY, JUNE 11, 2015
House of Representatives,
Subcommittee on Health,
Committee on Energy and Commerce,
Washington, DC.
The subcommittee met, pursuant to call, at 10:17 a.m., in
Room 2123 of the Rayburn House Office Building, Hon. Joseph R.
Pitts (chairman of the subcommittee) presiding.
Members present: Representatives Pitts, Guthrie, Whitfield,
Shimkus, Burgess, Lance, Griffith, Bilirakis, Long, Ellmers,
Bucshon, Brooks, Collins, Upton (ex officio), Green, Engel,
Schakowsky, Castor, Sarbanes, Lujan, Schrader, Kennedy,
Cardenas, and Pallone (ex officio).
Also present: Representatives King, Maloney, Nadler,
Donovan, and Clarke.
Staff present: Clay Alspach, Chief Counsel, Health; Gary
Andres, Staff Director; Leighton Brown, Press Assistant; Karen
Christian, General Counsel; Noelle Clemente, Press Secretary;
Paul Edattel, Professional Staff Member, Health; Carly
McWilliams, Professional Staff Member, Health; Katie Noraria,
Professional Staff Member, Health; Tim Pataki, Professional
Staff Member; Graham Pittman, Legislative Clerk; Adrianna
Simonelli, Legislative Associate, Health; Heidi Stirrup, Health
Policy Coordinator; Greg Watson, Staff Assistant; Christine
Brennan, Democratic Press Secretary; Jeff Carroll, Democratic
Staff Director; Waverly Gordon, Democratic Professional Staff
Member; Tiffany Guarascio, Democratic Deputy Staff Director and
Chief Health Advisor; Ashley Jones, Democratic Director of
Communications, Member Services and Outreach; Tim Robinson,
Democratic Chief Counsel; and Samantha Satchell, Democratic
Policy Analyst.
Mr. Pitts. Ladies and gentlemen, if you will, if you will
take your seats, we will begin. I would like to ask all of our
guests today to please take their seats. The subcommittee will
come to order. The Chair will recognize himself for an opening
statement.
OPENING STATEMENT OF HON. JOSEPH R. PITTS, A REPRESENTATIVE IN
CONGRESS FROM THE COMMONWEALTH OF PENNSYLVANIA
Today's Health Subcommittee hearing will examine the World
Trade Center (WTC) Health Program that was created in the James
Zadroga 9/11 Health and Compensation Act enacted in 2011. The
Act allocated $4.2 billion to create the Health Program, which
provides monitoring, testing, and treatment for people who
worked in response and recovery operations, as well as for
other survivors of the 9/11 attacks. The authorization of the
Health Program ends on September 30, 2015. Another part of the
law, the September 11th Victim Compensation Fund, is under the
jurisdiction of the Judiciary Committee. It will continue to
accept applications until October 3, 2016, over a year after
the Health Program authorization ends.
The WTC Health Program funds networks of specialized
medical programs, and these programs are designed to monitor
and treat those with 9/11-related conditions. For responders,
The World Trade Center Medical Monitoring and Treatment
Program; for survivors, the NYC Health and Hospitals
Corporation WTC Environmental Health Center; for NYFD
personnel, the Fire Department of New York Responder Health
Program; the National Program, the WTC Health Program has a
nationwide network of clinics with providers across the country
for responders and survivors who live outside the New York City
metropolitan area. These programs provide free medical services
by health care professionals who specialize in 9/11-related
conditions.
Our colleagues, Representatives Carolyn Maloney, Peter
King, and Jerrold Nadler, have jointly introduced legislation,
H.R. 1786, the James Zadroga 9/11 Health and Compensation
Reauthorization Act, which reauthorizes the Act. This
legislation has begun an important conversation that will lead
to a timely and fully offset reauthorization of the Health
Program.
Today's hearing will allow us to learn more about how the
program is working and whether changes are needed. We will hear
from the Director of the National Institute for Occupational
Safety and Health, who is responsible for administering the
program, as well as from the medical director of the Robert
Wood Johnson Medical School, and 2 first responders who are
enrolled in the World Trade Center Health Program.
Mr. Pitts. I look forward to the testimony today.
[The prepared statement of Mr. Pitts follows:]
Prepared statement of Hon. Joseph R. Pitts
Today's Health Subcommittee hearing will examine the World
TradeCenter (WTC) Health Program that was created in the James
Zadroga 9/11 Health and Compensation Act enacted in 2011.
The Act allocated $4.2 billion to create the Health
Program, which provides monitoring, testing, and treatment for
people who worked in response and recovery operations as well
as for other survivors of the 9/11 attacks. The authorization
of the Health Program ends on September 30, 2015. Another part
of the law, the September 11th Victim Compensation Fund, is
under the jurisdiction of the Judiciary Committee. It will
continue to accept applications until October 3, 2016, over a
year after the Health Program authorization ends.
The WTC Health Program funds networks of specialized
medical programs. These programs are designed to monitor and
treat those with 9/11-related conditions.
For responders--The World Trade Center Medical
Monitoring and Treatment Program;
For survivors--NYC Health and Hospitals
Corporation WTC Environmental Health Center;
For NYFD Personnel--The Fire Department of New
York (FDNY) Responder Health Program;
The National Program--The WTC Health Program has a
nationwide network of clinics with providers across the country
for responders and survivors who live outside the New York City
metropolitan area.
These programs provide free medical services by health care
professionals who specialize in 9/11-related conditions.
Our colleagues, Reps. Carolyn Maloney (NY), Peter King (NY)
and Jerrold Nadler (NY), have jointly introduced legislation,
H.R. 1786--the ``James Zadroga 9/11 Health and Compensation
Reauthorization Act''--which reauthorizes the Act. This
legislation has begun an important conversation that will lead
to a timely and fully offset reauthorization of the Health
Program.
Today's hearing will allow us to learn more about how the
program is working and whether changes are needed. We will hear
from the Director of the National Institute for Occupational
Safety and Health who is responsible for administering the
program, as well as from the medical director of the Robert
Wood Johnson Medical School and two first responders who are
enrolled in the World Trade Center Health Program.
I look forward to the testimony today and yield the balance
of my time to the gentleman from New Jersey, Rep. Leonard
Lance.
[Bill H.R. 1786 appears at the conclusion of the hearing.]
Mr. Pitts. And I would like to yield the balance of my time
to the gentleman from New Jersey, Representative Lance.
Mr. Lance. Thank you, Mr. Chairman. It is my honor to
welcome David Howley, a constituent of mine in New Jersey's
seventh congressional district, to the committee this morning.
David, thank you for making the trip from New Jersey to
share your story, and advocate for those who cannot be with us
today. We look forward to your testimony.
I first met David several months ago when he came into my
office in Westfield, New Jersey, to discuss the bill before us
today. And this Reauthorization Act is, I think, critically
important. David has been a tremendous advocate for the
legislation because, as he will detail in his testimony, he
knows firsthand the importance of these programs for him and
his fellow first responders and survivors.
David joined the New York Police Department in 1985, and
served in various departments over his 21-year tenure. He is a
third generation law enforcement official; following the
tradition of his father and grandfather. He was serving in the
NYPD Operations Division on September 11, 2001, and spent the
next several months in the dust and rubble of Ground Zero.
I am proud to have David here with us today, and I am proud
to be a cosponsor of this critical legislation.
It is my hope, Mr. Chairman, that we can work in a
bipartisan fashion to move this legislation forward quickly,
and I look forward to voting for it not only here and in full
committee, but on the floor of the House of Representatives.
Mr. Chairman, I yield back the balance of my time.
Mr. Pitts. The Chair thanks the gentleman. And I also would
note that some of our colleagues from the New York delegation
who are not on the committee, but very concerned of this issue
and sponsors of the legislation, have requested to sit on the
dais, and we welcome them this morning.
At this point, the Chair recognizes the ranking member of
the subcommittee, Mr. Green, 5 minutes for an opening
statement.
OPENING STATEMENT OF HON. GENE GREEN, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF TEXAS
Mr. Green. Thank you, Mr. Chairman, for holding the hearing
on this important program. I thank the witnesses today, and for
the first responders in the audience who--for their bravery and
service both on and after the tragic day of 9/11. Thank you for
coming today to share your personal experiences and shed light
on the significance of the World Trade Center Health Programs.
No one here can forget the horrific attacks perpetrated
upon our country at the World Trade Center in New York, the
Pentagon, and Washington, and at the field in Shanksville,
Pennsylvania. During and after the attacks, tens of thousands
of first responders, including police, firefighters, emergency
medical workers, jumped into action to assist in rescue,
recovery, and cleanup. As a result of their service, these
responders were exposed to dust, smoke, toxins, such as
pulverized concrete, fibrosis, glass, particulate matter, and
asbestos. This exposure caused many of them to develop a
spectrum of debilitating diseases, including respiratory
disorders like asthma, skin, prostate, and lymphedema cancers.
A GAO report on the 9/11 Health Program suggested that
firefighters who responded to the attack ``experienced a
decline in lung function equivalent to that of which produced
by 12 years of aging.''
In addition to the physical ailments these heroes now have,
many have suffered post-traumatic stress syndrome, PTSD,
depression, anxiety stemming from psychological trauma they
experienced in the aftermath of the attack.
Nearly 1 decade after the September 11 terrorist attacks,
the James Zadroga 9/11 Health and Compensation Act was signed
into law in 2010. The Zadroga Act created the World Trade
Center Health Program within the Department of Health and Human
Services. The program provided evaluation, monitoring, and
medical necessary physical and mental health treatments to
first responders and certified eligible survivors of the World
Trade Center-related illnesses. It has also established a
network of Clinical Centers of Excellence and data centers. For
these responders and survivors who reside outside the New York
area, the Act created a national network of health providers
who provide the same types of services for World Trade Center-
related illnesses. While cancer was not originally listed among
the statutory WTC-related health conditions, 60 types of cancer
were added in 2012, after a petition by Members of Congress. As
of May the 5th of this year, 37,000 members of the health
program had cancer.
The Act also established the Victim Compensation Fund that
provides compensation for harm suffered as a result of debris
removal. Without action by Congress, funding for the current
Health Program will terminate on September of 2016. The James
Zadroga 9/11 Health and Compensation Reauthorization will
reauthorize the critical World Trade Center Health Program and
the Victim Compensation Fund.
As requires under the current program, New York City will
continue to pay 10 percent of the total cost. It is important
to note that WTC Health Program serves our heroes nationwide,
and extends far beyond the New York area. Both these and
currently enrolled and future enrollees live in all areas of
the country. In fact, as of August 2014, 429 of the 435
congressional districts were home to at least 1 9/11 responder
or survivor.
We must not abandon those who bravely sacrificed their own
wellbeing on behalf of the country in the wake of terrible
attacks. We have a duty to serve our first responders and
survivors and heroes with complex healthcare from 9/11. It is
critically important that we support the James Zadroga 9/11
Health Compensation Reauthorization Act.
I would like to thank the first responders for their
gallant and selfless service on and after 9/11. I would also
like to thank the doctors and administrators of the program for
their efforts to treat the complex illnesses afflicted on our
first responders, and continued research on the impact of
exposure to toxins and psychological trauma.
[The prepared statement of Mr. Green follows:]
Prepared statement of Hon. Gene Green
Thank you, Mr. Chairman, for holding a hearing on this
important program. I thank the witnesses today, and to the
First Responders in the audience, for their bravery and
service, both on and after, the tragic day of 9/11.
Thank you for coming today to share your personal
experiences with the committee and shed light on the
significance of the World Trade Center Health Programs. No one
here can forget the horrific attacks perpetrated upon our
country at the World Trade Center in New York, the Pentagon in
Washington, and at a field in Shanksville, Pennsylvania.
During and after the attacks, tens of thousands of first
responders--including police, firefighters, and emergency
medical workers--jumped into action to assist in rescue,
recovery, and clean up. As a result of their service, these
responders were exposed to dust, smoke, and toxins, such as
``pulverized concrete, fibrous glass, particulate matter, and
asbestos.''
This exposure caused many of them to develop a spectrum of
debilitating diseases, including respiratory disorders like
asthma, and skin, prostate. and lymphedema cancers.
A GAO report on the 9/11 Health program suggested that
firefighters who responded to the attack quote ``experienced a
decline in lung function equivalent to that which would be
produced by 12 years of aging.'' In addition to the physical
ailments these heroes now have, many also suffer from Post-
Traumatic Stress Disorder or ``PTSD,'' depression, and anxiety
stemming from the psychological trauma they experienced in the
aftermath of the attack. Nearly one decade after the September
11 terrorist attacks, the James Zadroga 9/11 Health and
Compensation Act was signed into law in 2010. The Zadroga Act
created the World Trade Center Health Program within the
Department of Health & Human Services.
The Program provides evaluation, monitoring, and medically
necessary physical and mental healthtreatments to first
responders and certified-eligible survivors for World Trade
Center-related illnesses.
It also established a network of Clinical Centers of
Excellence and Data Centers. For those responders and survivors
who reside outside the New York City area, the Act created a
national network of health care providers, who provide the same
types of services for World Trade Center-related illnesses.
While cancer was not originally listed among the statutory WTC-
related health conditions, 60 types of cancer were added in
2012 after a petition by members of Congress.
As of May 5 of this year, 3,700 members of the Health
Program had cancer. The Act also established the Victim
Compensation Fund to provide compensation for harm suffered as
a result of debris removal. Without action by Congress, funding
for the current Health Program will terminate in September
2016. The James Zadroga 9/11 Health and Compensation
Reauthorization Act will reauthorize the critical WCT Health
Program and VCF.
As required under the current program, New York City would
continue to pay for 10 percent of the total program costs.
It is important to note that the WTC Health Program serves
our heroes nationwide. It extends far beyond the New York area.
Both those currently enrolled and future enrollees live in
all areas of the country. In fact, as of August 2014, 429 of
the 435 Congressional Districts were home to at least one 9/11
responder or survivor. We must not abandon those who bravely
sacrificed their own well-being on behalf of country in the
wake of the terrible attacks.
We have a duty to serve our first responders, survivors,
and heroes with complex health needs from 9/11.
It is critically important that we support the James
Zadroga 9/11 Health and Compensation Reauthorization Act. I
thank the first responders for their gallant and
selflessservice on and after 9/11. I also want to thank the
doctors and administrators of the program for their efforts to
treat the complex illnesses afflicting our first responders,
and continued research on the impact of exposure to toxins and
psychological trauma.
Thank you, Mr. Chairman. I yield back.
Mr. Green. Mr. Chairman, if someone on our side of the
aisle would like a minute, I would be glad to yield to them. I
would like to yield to my colleague from New York.
Ms. Clarke. I thank the ranking member of the subcommittee,
as well as the chairman. And welcome our witnesses here today.
While not a member of this subcommittee, I am a member of
the full Committee on Energy and Commerce. I am Congresswoman
Clarke of New York. And I wanted to thank Chairman Pitts and
Ranking Member Green for holding this hearing, and allowing me
to sit in this very important hearing. Also want to thank our
panelists. It is a--good that you have shared your experiences
and remind America of the importance of renewing this very
important program. This is a great first step toward
reauthorization, in a time when the American people are
skeptical about the work of Congress, so I am happy that this
committee is working in a bipartisan fashion to move
expeditiously to renew these important health programs.
Congress must move forward to ensure first responders and
survivors of the 9/11 terrorist attacks on the World Trade
Center, the Pentagon, and Shanksville, Pennsylvania, continue
to receive the care they deserve and they so sorely need.
With that, Mr. Chairman, Mr. Ranking Member, I yield back
the time.
Mr. Green. Mr. Chairman, I yield back.
Mr. Pitts. The Chair thanks the gentleman.
Now recognize the chair of the full committee, Mr. Upton, 5
minutes for an opening statement.
OPENING STATEMENT OF HON. FRED UPTON, A REPRESENTATIVE IN
CONGRESS FROM THE STATE OF MICHIGAN
Mr. Upton. Well, thank you, Mr. Chairman.
Now, back on September 11, '01, the world as we knew it was
turned upside down by unthinkable acts of terrorism, which took
the lives of nearly 3,000 individuals in New York,
Pennsylvania, and Virginia, left a mark on every American.
Every one of us was impacted. From the smoldering ruins of the
Twin Towers and the Pentagon to the wreckage of United Airlines
Flight 93, the painful images and heartbreaking personal
stories of that day, every minute, will not be forgotten.
We remember the thousands of innocent lives lost and the
communities of loved ones they left behind, and many of us met
with those. We also honor the countless acts of heroism and
leadership shown by brave American men and women in those hours
of pandemonium and in the days, weeks, months, and now years
that have followed. Then, for me, as chair of the Telecom
Subcommittee on this committee, I led a bipartisan delegation,
both to New York and to the Pentagon, where we witnessed
firsthand the valiant efforts of our first responders who were
certainly exhausted, overwhelmed, but still working 24/7. First
responders spent hours, days in air that was thick with dust
and smoke, digging through the rubble, searching for survivors.
When I visited Ground Zero, New York's finest were still
working round the clock in impossible conditions for the
recovery efforts. Their selfless work took a toll on their
health. We know that. The Federal Government provided aid to
those individuals who were injured and the families of those
who were killed in the attacks through a discretionary grant
program, as we should.
In 2011, the Zadroga 9/11 Health and Compensation Act
established the World Trade Center Health Program and the
Victim Compensation Fund. Our ranking member, Frank Pallone,
and our New York colleagues Representatives Carolyn Maloney,
Peter King, and Jerry Nadler, have jointly introduced now H.R.
1786, the James Zadroga 9/11 Health and Compensation
Reauthorization Act, which would reauthorize both of these
programs.
At today's hearing, we are going to focus on the World
Trade Center Health Program as it is the program that falls in
this committee's jurisdiction. The authorization for the World
Trade Center Health Program ends at the end of September, just
a few months from now, while the Victim Compensation Fund
remains open to applicants into October of 2016.
The WTC Health Program funds networks of specialized
medical programs designed to monitor and treat those with 9/11-
related conditions. The members enrolled in the program are not
just from the greater New York area. In 2014, there were 71,942
individuals in the World Trade Center Health Program from 429
of the 435 congressional districts. In fact, there are 75
Michigan residents currently enrolled in the WTC Health
Program. Today's hearing is, yes, an important opportunity to
learn more about how the World Trade Center Health Program has
operated since its authorization in, and what is needed for it
to successfully operate and meet the needs of its members in
the future.
I want to thank all of the witnesses today for taking the
time to be here, especially thank Officer Howley and Detective
Burnette for their service to our great country, and for
sharing their personal stories and struggles with this
subcommittee. The bill needs to be passed, and I will look to
consider every effort to make sure that we get it to the House
Floor prior to its--prior to the end of September so that we
will have an opportunity to make sure that these victims are
taken care of.
And I yield back the balance of my time.
[The prepared statement of Mr. Upton follows:]
Prepared statement of Hon. Fred Upton
On September 11, 2001 the world as we know it was turned
upside down by unthinkable acts of violent extremism, which
took the lives of nearly 3,000 individuals in New York,
Pennsylvania, and Virginia--leaving a mark on every American.
From the smoldering ruins of the Twin Towers and the Pentagon
to the wreckage of United Airlines Flight 93, the painful
images and heartbreaking personal stories of that day will not
be forgotten. We remember the thousands of innocent lives lost
and the communities of loved ones they left behind. We also
honor the countless acts of heroism and leadership shown by
brave American men and women in those hours of pandemonium and
in the days, weeks, and months that followed.
First responders spent countless hours in air that was
thick with dust and smoke digging through the rubble, and
searching for survivors. The conditions were very difficult and
took a toll on their health. Because of this the Federal
Government provided aid to those individuals who were injured
or killed in the attacks through a discretionary grant program.
In 2010 the Zadroga 9/11 Health and Compensation Act was signed
into law which established the World Trade Center Health
Program (WTCHP) and the Victim Compensation Fund (VCF). Our New
York colleagues Reps. Carolyn Maloney, Peter King, and Jerrold
Nadler have jointly introduced H.R. 1786, the ``James Zadroga
9/11 Health and Compensation Reauthorization Act'' which
reauthorizes both of these programs.
At today's hearing we will focus on the World Trade Center
Health Program as it is the program that falls in our
committee's jurisdiction. The WTC Health program funds networks
of specialized medical programs that are designed to monitor
and treat those with 9/11-related conditions. The members
enrolled in the program are not only from the greater New York
area, but in 2014 71,942 members enrolled in the World Trade
Center Health Program from 429 out of 435 congressional
districts.
Today's hearing gives us an opportunity to learn more about
how the WTC Health Program has operated since its authorization
in 2010 and what is needed for it to successfully operate and
meet the needs of its members in the future. I would like to
thank all of the witnesses for taking the time to be here today
to discuss the WTC Health Program and I would like to
specifically thank Officer Howley and Detective Burnette for
their service to our great country and for sharing their
personal stories and struggles with the subcommittee.
Thank you, Mr. Chairman, and I yield back the balance of my
time.
Mr. Pitts. The Chair thanks the gentleman.
And now the Chair is pleased to recognize the ranking
member of the full committee, a gentleman who has many
constituents impacted by this issue, Mr. Pallone, 5 minutes for
an opening statement.
OPENING STATEMENT OF HON. FRANK PALLONE, JR., A REPRESENTATIVE
IN CONGRESS FROM THE STATE OF NEW JERSEY
Mr. Pallone. Thank you, Chairman Pitts, and also Chairman
Upton. And I particularly want to thank Chairman Upton for the
comments he just made, you know, highlighting how we need to
perceive this as a national program, and impacting people who
came and helped out on 9/11 and the aftermath from all parts of
the country.
My staff probably is tired of my telling this story, but I
remember within a few days after the attack, we went up to New
York City with President Bush, and I was standing next to this
big yellow fire engine that said Hialeah, Florida. And I said,
what is this truck doing from Hialeah, because I think it was
only 1 or 2 days after, and I wondered how it even got there so
quickly. And I talked to the firemen from Hialeah, Florida, and
they said, oh, we just--as soon as this happened, we just got
in our fire truck and we drove up from Florida because we
wanted to help. And it just struck me at the time about how so
many people responded from all over the country, and so many
people were injured because of the fact that they were there
for a few days or a few weeks or a few months even.
So this bill is a critical first step in ensuring that the
9/11 Health Program is extended as soon as possible. As you
both already know, this is one of my top priorities for 2015,
and I am grateful for Chairman Pitts and Upton for your
willingness to work with us to ensure the timely passage of
this bill.
I have to recognize all the first responders who are here,
and to whom we owe a depth of gratitude. I also want to
acknowledge Dr. Iris Udasin, who runs the New Jersey 9/11
Health Clinic. Thank you for being here to share your expertise
and experience with us today. And let me also mention all the
New Yorkers, Representative Maloney, the sponsor of the bill. I
don't know if Representative Nadler is here, but certainly he
has been involved from the beginning. Representative King I
see, who joined the committee today, as well as our
representatives, Yvette Clarke, Eliot Engel, and also my
colleague from New Jersey, Leonard Lance, who is the cosponsor.
Since day 1, you have all fought tirelessly to ensure that our
Nation's 9/11 responders and survivors are cared for, and I am
proud to fight alongside you.
Beyond the immediate loss of life of 9/11, we now know with
great documentation that thousands of first responders and
survivors of the attacks are now suffering debilitating
illnesses from its aftermath, and in fact, more than 100
firefighters and 50 law enforcement officers have reportedly
lost their lives to WTC-related health conditions.
Additionally, more than 1,500 active duty firefighters and EMS
personnel, and over 550 law enforcement officers were forced to
retire due to WTC-related health conditions.
We now have a deep understanding of how the tons of dust,
glass fragments, and other toxins released into the air
affected both responders and survivors. Illnesses include
respiratory diseases, gastroesophageal disorders, mental health
conditions, and cancer. And that is why the James Zadroga 9/11
Health and Compensation Act, signed into law in 2011, is so
critical. It established a program to monitor and screen
eligible responders and survivors, and provides medical
treatment to those who are suffering from World Trade Center-
related diseases. But what is so important to note is that this
program isn't there to provide health insurance. These are
complicated conditions that are chronic in nature, and require
special expertise to appropriately diagnose and treat. That is
why the program includes a network of clinics and providers
specifically trained to treat these diseases. It also ensures
that providers and survivors bear no out-of-pocket costs
associated with these particular health conditions.
The WTC Health Program currently provides monitoring and
treatment services for more than 71,000 responders and
survivors. They reside in every State, and in 429 of the 435
congressional districts. If some of you don't know, the law is
named for James Zadroga, a New Jersey hero who responded on 9/
11 and spent hundreds of hours digging through World Trade
Center debris. Mr. Zadroga died in 2006 from pulmonary disease
and respiratory failure after his exposure to toxic dust at the
World Trade Center site. Like him, thousands of people from all
over this country came to the aid of our country, and helped
others at Ground Zero. Those responders and survivors should
not be abandoned, and I hope we can extend the health program
without delay.
[The prepared statement of Mr. Pallone follows:]
Prepared statement of Hon. Frank Pallone, Jr.
Thank you Chairmen Pitts and Upton for calling today's
hearing. This is a critical first step in ensuring that the 9/
11 Health program is extended as soon as possible. As you both
already know, this is one of my top priorities for 2015, and
I'm grateful for your willingness to work with me to ensure its
timely passage.
Before I get started, I have to recognize all the first
responders who are here and to whom we owe a debt of gratitude.
I also want to acknowledge Dr. Iris Udasin, who I've known for
many years, who runs New Jersey's 9/11 Health Clinic. Thank you
for being here to share your expertise and experience with us
today.
Lastly, let me recognize Reps. Maloney, Nadler, and King
from New York, who have joined the committee today, as well as
our Members Reps. Engel and Clarke. Since day one you have all
fought tirelessly to ensure that our Nation's 9/11 responders
and survivors are cared for. I'm proud to fight alongside you.
Beyond the immediate loss of life of 9/11, we now know,
with great documentation, that thousands of first responders
and survivors of the attacks are now suffering debilitating
illnesses from its aftermath. In fact, more than 100
firefighters and 50 law enforcement officers have reportedly
lost their lives to WTC-related health conditions.
Additionally, more than 1500 active duty firefighters and EMS
personnel and over 550 law enforcement officers were forced to
retire due to WTC-related health conditions.
We now have a deep understanding of how the tons of dust,
glass fragments and other toxins released into the air affected
both responders and survivors. Illnesses include respiratory
diseases, gastro-esophageal disorders, mental health
conditions, and cancer.
That is why the James Zadroga 9/11 Health and Compensation
Act, signed into law in 2011, is so critical. It established a
program to monitor and screen eligible responders and survivors
and provides medical treatment to those who are suffering from
World Trade Center related diseases.
But what is so important to note, is that this program
isn't there to provide health insurance. These are complicated
conditions that are chronic in nature and require special
expertise to appropriately diagnose and treat. That is why the
program includes a network of clinics and providers specially
trained to treat these diseases. It also ensures that providers
and survivors bear no out of pocket costs associated with these
particular health conditions.
The WTC health program currently provides monitoring and
treatment services for more than 71,000 responders and
survivors. They reside in every State and in 429 of the 435
Congressional Districts.
If some of you don't know, the law is named for James
Zadroga, a New Jersey hero who responded on 9/11 and spent
hundreds of hours digging through World Trade Center debris.
Mr. Zadroga died in 2006 from pulmonary disease and respiratory
failure after his exposure to toxic dust at the World Trade
Center site.
Like him, thousands of people, from all across this
country, came to the aid of our country and helped others at
Ground Zero. Those responders and survivors should not be
abandoned. I hope we can extend the WTC health program without
delay.
I yield the remainder of my time to Representative Engel.
Mr. Pallone. I only have 30 seconds left for Mr. Engel, I
apologize, but I yield to him.
Mr. Engel. Well, thank you. I thank the gentleman for
yielding. And let me agree with everything you said.
In the aftermath of September 11, it is estimated that up
to 400,000 Americans were exposed to copious amounts of smoke
and toxic substances, such as asbestos, and as a result, many
of our heroes now suffer from these debilitating conditions;
acute respiratory disorders, cancer, depression, post-traumatic
stress disorder, and it goes on and on. And it is heartbreaking
that the 9/11 survivors and first responders who have already
given so much must now carry the burdens of these lung
ailments, brain, very least we can do in thanks is to help
them.
So I was proud to be an original cosponsor of the James
Zadroga 9/11 Health and Compensation Act, and I am proud to be
an original cosponsor of the reauthorization we are discussing
today. A failure on Congress' part to pass this vital
legislation would constitute an egregious affront to the
Americans who gave so much on 9/11 in service to their country.
And I specifically say Americans because the population of
those who will benefit from this reauthorization spans the
entire United States. It is 429 of the 435 congressional
districts that benefit from these programs. So this is an issue
of national performance. So the first responders who rely on
the World Trade Center Health Program did not hesitate to risk
their lives for fellow Americans on 9/11, and we should not
hesitate to care for them now. So it is of critical importance
that we permanently reauthorize the James Zadroga 9/11 Health
and Compensation Act.
Thank you, Mr. Pallone. Thank you, Mr. Chairman.
Mr. Pitts. The Chair thanks the gentleman.
And as usual, all members' written opening statements will
be made part of the record.
That concludes our time for opening statement. I have a
unanimous consent request. I would like to submit the following
documents for the record. Statements from Representative Peter
King, New York, 2nd District, from the International
Association of Firefighters, from the Sergeants Benevolent
Association, from the National Association of Police
Organizations, and an article from the New York City's
Patrolman's Benevolent Association featuring Mr. David Howley.
Without objection, so ordered.
[The information appears at the conclusion of the hearing.]
Mr. Pitts. We have 2 panels today. On our first panel we
have Dr. John Howard, Director, National Institute for
Occupational Safety and Health. Thank you very much for coming
today, Dr. Howard. Your written statement will be made part of
the record. You will be recognized for 5 minutes to make your
opening statement. At this time, you are recognized. Welcome.
STATEMENT OF JOHN HOWARD, M.D., DIRECTOR, NATIONAL INSTITUTE
FOR OCCUPATIONAL SAFETY AND HEALTH
Dr. Howard. Thank you, Mr. Chairman, and distinguished
members of the committee. My name is John Howard, and I am the
administrator of the World Trade Center Health Program. I am
very pleased to appear before you today to discuss the program
and those it serves, who responded to or survived the September
11, 2001, terrorist attacks on New York City, and those who
responded at the Pentagon and in Shanksville, Pennsylvania.
The program's members responded to an epic disaster, and as
a result, suffer mental and physical injury, illness, and the
risk of premature death. The program's members responded to the
9/11 disaster from all 50 States, and as has been stated, from
429 of the 435 congressional districts. The original effort to
care for those affected by 9/11 toxic exposures operated as a
series of cooperative agreements and grants. As a
discretionarily funded program, it depended on year-to-year
appropriations, making it challenging to plan adequately to--
for the members' ongoing health needs. In January 2011, as has
been stated, the James Zadroga 9/11 Health and Compensation Act
became law. Stabilization of funding allows the program to more
adequately care for 9/11 responders. In calendar year 2014, of
the 71,942 current members enrolled in the program, 20,883
members received treatment for health conditions arising from
hazardous exposures from 9/11, and 28,059 members received
health monitoring to ensure early medical intervention for any
developing health condition that is specified for coverage by
the program.
Since the program's implementation, members have been
treated for a number of different health conditions. For
example, 11,473 members have been treated for asthma, 6,672
members have been treated for post-traumatic stress disorder,
and 6,497 members have been treated for chronic respiratory
disorders. The majority of our members suffer from multiple
mental and physical health conditions, and take multiple
medications for these conditions. Certain types of cancer were
added to the list of health conditions covered by the program
in late 2012. Since then, the program has certified 4,265 cases
of cancer.
The World Trade Center Health Program fills a unique need
in the lives of our members and for our society. First, members
are evaluated and treated by medical providers who have a depth
of experience dating back to September 11, 2001, and the
physical and mental health needs of 9/11 responders and
survivors they are very familiar with. Their extensive clinical
experience with the responder and survivor populations, as well
as their understanding of the role of exposure in causing
disease, exceeds the training of providers unfamiliar with the
types of exposures and health conditions common to the 9/11
population, and how to make the connection between exposure and
illness that the Zadroga Act requires.
Second, our members are receiving health care that cannot
be provided, or only provided with great difficulty, by other
types of insurance plans. For example, health insurance plans
do not routinely cover work-related health conditions, leaving
such coverage to Workers' Compensation insurance. However,
Workers' Compensation insurance often presents coverage
challenges to members because their 9/11 health conditions
often first manifest after 9/11, many years later, beyond the
statute of limitations found in most State Workers'
Compensation laws. The World Trade Center Health Program serves
a vital role in overcoming the difficulties that members might
otherwise experience in its absence. Without the program, 9/11
responders and survivors might end up in limbo instead of in
treatment.
Third, by providing evaluation and treatment for those most
affected by 9/11 as a unified cohort, the program greatly aids
not only the individual members, but also our national
understanding of the long-term health effects of 9/11,
including its effects on children. The program helps us better
prepare for the medical needs arising from large-scale, long
duration disasters that might not, hopefully, occur ever in the
future.
Thank you for the opportunity to testify, and I am happy to
answer any questions you may have.
[The prepared statement of Dr. Howard follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Mr. Pitts. The Chair thanks the gentleman, and I will begin
the questioning and recognize myself 5 minutes for that
purpose.
Dr. Howard, would you continue to elaborate a little bit on
the history of the World Trade Center Health Program, how it
came to be, how it has changed over time?
Dr. Howard. Thank you. The program started as a--an
immediate response to what doctors were seeing, especially with
the New York City Fire Department, in what was called at that
time a World Trade Center cough, and those doctors and others
that were recruited to the effort began to observe that
individuals who were responding were becoming ill from
inhalation of the dust and the toxins contained in the dust. So
immediately, through FEMA appropriations, CDC and then the
National Institute for Occupational Safety and Health, was able
to offer grants and cooperative agreements so that those
doctors could begin now many, many years later, their first
work in trying to articulate, characterize the issues that
responders were facing, and survivors.
Mr. Pitts. Another question: What are the consequences of
letting the World Trade Center Health Program expire in
September of 2015? How would it affect the operation of the
Centers of Excellence across the country, and the patients who
use these facilities and services?
Dr. Howard. Certainly, any of us that receive health care
from a particular health plan, if we are notified that that
plan no longer exists, creates great stress in our life. We
have to adjust to new providers and other changes. Our efforts
to help those who may be a part of our discontinued program,
let's hope that does not happen, would have to receive other
providers of care, and it would be our responsibility to make
sure they did.
The Centers of Excellence would not operate anymore as a
coordinated care operation for responders and survivors.
Mr. Pitts. Thank you. Now, we are aware that Special Master
Sheila Birnbaum administers the Victim Compensation Fund, which
is housed at the Department of Justice. Is there coordination
between the operations of the Victim Compensation Fund and the
World Trade Center Health Program?
Dr. Howard. Yes, sir, there is. We have data sharing and
medical review agreements with the Victim Compensation Fund. We
regularly meet with the staff. Our staff is embedded with their
staff to assist in the medical review. The Victim Compensation
Fund has adopted our program requirements for their medical
review. To date, we have provided information to them on 18,262
of their VCF claimants. We continue to work very closely with
the Victim Compensation Fund.
Mr. Pitts. How much higher is the Federal Employees
Compensation Act, FECA, compensation rate compared to Medicare
Parts A and B reimbursements for hospitals?
Dr. Howard. The statute--the Zadroga Act sets the
reimbursement rate according to the Workers' Compensation rates
of the Federal Government, the FECA rates. Medicare rates are
lower, but maybe by 10 to 20 percent lower. So they are a--the
FECA rates are higher and our reimbursement rates for providers
are higher than Medicare.
Mr. Pitts. Dr. Howard, I can imagine that it is a
logistical challenge to provide care for the responders and
survivors who are scattered all across the country. What can
you do to ensure that a physician in another part of the
country, seeing only a few World Trade Center patients,
benefits from the clinical experience of the physicians in the
New York metropolitan region who have more experience treating
these WTC-related health conditions?
Dr. Howard. The Nationwide Provider Network that we have,
which is currently seeing about 8,287 individuals, we have
total coordination with that provider network. On the one hand,
all of those individuals who do monitoring for our survivors
and responders that are in the nationwide program are trained--
occupationally trained physicians so that they are equivalent
to the physicians that we have in our Centers of Excellence in
New York and New Jersey. We also provide them with additional
training. We are working with Medscape right now to have online
training available for all of our providers. We work with the--
our contractor, LHI, which has the Nationwide Provider Network,
and that physician, their medical director, sits in all of our
groups and committees, and we engage actively with those
physicians. So I would say that for our relationship with the
Nationwide Provider Network, those physicians are on par with
our physicians at the CCEs.
Mr. Pitts. Good. Thank you very much. My time has expired.
The Chair now recognizes the ranking member of the
subcommittee, Mr. Green, 5 minutes for questions.
Mr. Green. Dr. Howard, prior to the passage of the James
Zadroga 9/11 Health and Compensation Act of 2010, you
administered the CDC grant program that funded medical
monitoring and treatment services for 9/11 survivors and
responders. That program was funded through discretionary
dollars, and there is always uncertainty about whether and what
amount of discretionary funding would be appropriated for the
grant program.
Dr. Howard, can you describe how the creation of the World
Trade Center Health Program, through the Zadroga Act, has
improved your ability to ensure that responders and survivors
get the quality medical services that they need?
Dr. Howard. Thank you. I would respond in 2 ways. One, on
behalf of the members, it is very stressful to constantly be
told on a year-by-year basis that your care may go away, your
doctor and the institution, the facility that you go to, may
change. So it created a pervasive sense of stress. Mind you, in
our population, we have many thousands of individuals that
suffer from PTSD, and some highly resistant PTSD, and I am sure
that if they were here with me, they would say how stressful
year-by-year funding is to the program.
From the administrative perspective, it is very difficult
because we were always up to the last minute, thinking should
we start preparing for the program not to be funded, and that
was certainly something that we did not want to happen, but it
requires a long process of preparation. So we were never sure
about that.
Mr. Green. So the dedicated mandatory fundings helped you
not only plan better, but also the reaction from the patients.
Dr. Howard. It is like night and day. When the Zadroga Act
passed, I think all of us, members and us that were
administrating the program, breathed a sigh of relief that we
had 5 years. We never had that before.
Mr. Green. OK. The James Zadroga 9/11 Health and
Compensation Reauthorization would permanently extend the
program. Could you explain how a permanent extension of the
program would ensure that responders and survivors have that
peace of mind? You talked about that medical monitoring and
treatments it is--they come to rely on will continue to meet
their needs.
Dr. Howard. Well, as I say, I think that the assurance of
having the same provider, especially for our patients that
suffer from very serious mental and physical conditions, is a
peace of mind that can only be bought from mandatory funding
without a--an end date. For us in the program, it really helps
us do long-term strategic planning. It is very hard to do
contracts when you can only provide a year or 2, or 5 years,
but being able to look beyond that 5-year horizon is extremely
helpful for the efficiency and the integrity of the program.
Mr. Green. It seems the patients enjoy a great deal of
understanding from the providers--the doctors and providers in
the program. How do you think this affects the patient
outcomes?
Dr. Howard. Without doubt, the providers that I first met
in August of 2002, when I became first involved in this
program, are the very same providers that I see now in June of
2015. Their dedication to this population has been worthy of
note.
Mr. Green. So the doctor-patient relation is important
because of the continuation of the program.
Dr. Howard. The trust that our members have to the
providers that we are fortunate to have cannot be duplicated
anywhere else.
Mr. Green. Do you think continuing the program is so
important it--to ensuring the same level of knowledge and
expertise?
Dr. Howard. Very definitely. Our providers have a wealth of
clinical information that other providers would take them years
to develop.
Mr. Green. OK. Thank you, Mr. Chairman. I yield back my
time.
Mr. Pitts. The Chair thanks the gentleman.
Now recognize the vice chairman of the subcommittee,
gentleman from Kentucky, Mr. Guthrie, 5 minutes for questions.
Mr. Guthrie. Thank you, Mr. Chairman. Thank you, Dr.
Howard, for being here.
And I spent, I guess, 6 years of my life in college and
grad school in metro New York, and one of my favorite things to
do back when I was an undergrad is use the USO, and spent a lot
of time at the USO off Times Square. There was always uniformed
public servants there, and it was always enjoyed getting to
know and talk to them. I am a talker, so I engaged with them,
and what a great service that people feel.
You had--actually I wasn't going to go this direction, but
I think it is important to talk about, and it has opened my
eyes a little bit in what you said. I will kind of emphasize or
maybe go a little bit further. You know, I live in Bowling
Green, Kentucky, so where we take care of our servants as well
as--if a fire--if there is a fire, someone goes into the
firehouse and they get injured or whatever, you know, we have
assistance in place to--disability, insurance and so forth. And
so I think a lot of us that aren't, you know, in New York
continuously and the surrounding areas, like some of my friends
here, is that, you know, are the programs already in place, and
so what you have hit on today is probably the first time I have
thought of it. I know it is unique in the massiveness of it,
but why is it unique in terms of other injuries that people
might receive in other--that requires its own system, other
than just the volume. But--so could you hit the challenges,
because that--because you have opened my eyes to some things
today, and hit the challenges that--you have already kind of
said, but emphasize why this is completely unique, that needs
its own program, why diseases are different than if you were in
a normal or
a--well, I don't know if normal is the right word, but a
more standard, I guess, kind of situation that firefighters or
other people would be in?
Dr. Howard. I would be happy to. And I think the best way
to answer that question is by looking at some of the findings
that we have gotten from the investment that the Act has
allowed us to make in research, looking at this population and
the conditions. And I will just mention a few issues. On the
mental health issue, we have seen a delayed onset of PTSD. Now,
that is not normally seen in other types of situations. That is
something that we are seeing in this population. It is--we have
also seen a worsening of PTSD despite conventional treatments.
So that is something that is new in this population. In terms
of respiratory disease, we are seeing an onset of obstructive
airways disease beyond 5 years after exposure. We are also
seeing bronchial hyper-reactivity persist over a decade, and
that is something new. In terms of asthma, we have seen
patients in our program who have asthma, who have lost full-
time employment because of their asthma, more than we have seen
in the general asthmatic population.
So there are a number of findings that we are seeing from a
clinical perspective in this population that we would never
have learned had we not had the group together.
Mr. Guthrie. If it was just normal Workers' Comp or other
things. And so I want to get to another thing. So you said
there are 71,000 people in the program. How do you--what are
the criteria--do you have--did you have to be on-site for so
many days, or I mean----
Dr. Howard. Well----
Mr. Guthrie [continuing]. Or did you have to actually be in
the rubble, or are you----
Dr. Howard. The simple answer----
Mr. Guthrie [continuing]. Blocks away, I mean what is the--
--
Dr. Howard. The simple answer is that the Zadroga Act is
highly specific about the criteria for eligibility in the
program. And it includes for--let's say for New York City
police officers--location, the duration of their exposure, and
other factors. So eligibility criteria are pretty well spelled
out in the Act.
Mr. Guthrie. What about the non-public safety personnel
that can be in the program?
Dr. Howard. Right. There are criteria for eligibility for
volunteers that came from all over the country to volunteer as
responders. Similarly, in the section of the Act that has to do
with survivors, there are eligibility--5 levels of eligibility
requirements for survivors. So if someone comes to our program,
wants to be a member, the first step is filling out an
application in which they--a lengthy application,
unfortunately, I might add, in which all of that information is
solicited so that we can establish whether or not their
experience meets the eligibility requirements of the Act.
Mr. Guthrie. And I think some concerns, as we debated
before, I just want to emphasize this, is that anywhere in
terms of health care and people getting the care whatever they
deserve, I think--I know I remember asking the question, why
such a separate, unique program, and you have given me some
really good things to think about, so I really appreciate it
very much.
Appreciate it and I yield back.
Dr. Howard. Thank you.
Mr. Pitts. The Chair thanks the gentleman.
And now recognize the ranking member of the full committee,
Mr. Pallone, 5 minutes for questions.
Mr. Pallone. Thank you, Mr. Chairman.
Dr. Howard, the World Trade Center Health Program relies on
Clinical Centers of Excellence to provide most of the
monitoring and medical care through the program, and those
centers employ clinicians that have both the specialized
knowledge base and deep experience in treating the unique
physical and mental health needs of 9/11 responders. And I know
you have already talked about this, I am kind of following up
on what Mr. Guthrie said. I know that patients in the New York
City metropolitan region continue to see their personal
physicians for their general health care needs, but often
obtain monitoring and treatment services for their conditions
at these centers. And I also understand that, you know, if
somebody is in another part of the country they can go to a
network of doctors that are provided through the program. But
some of them also come to the centers. I know that at the New
Jersey centers we get people from all over the country that
will travel just because of the expertise that exists.
So if you could just comment on the treatment benefits of
individuals using these centers rather than their personal
physicians for their 9/11-related health conditions, or even,
you know, traveling when they can see someone who is part of
the WTC network, they could come to the centers.
Dr. Howard. Yes, I would be happy to. And I think it boils
down to the difference in physicians in terms of their
expertise, as you said. Occupational and environmental
physicians who are schooled in that particular subspecialty
know how to connect an exposure with a health condition. When I
went to medical school, I did not learn that. I learned how to
take care of a health condition; I didn't learn to go back and
do an extensive history to try to figure out what were your
exposures, and was that exposure related to this health
condition that I see. That is a specialty of occupational and
environmental medicine where we try to correlate the exposure
and the health condition.
So physicians that are--that we use both in the CCEs that
are--have been involved since 2001, and in the Nationwide
Provider Network, have that capability. Physicians that don't
have that capability would not be able to listen to the
patient's symptoms and be able to say, yes, your exposure--I am
going to make a determination that your exposure caused that
health condition, or contributed to that health condition, or
aggravated that health condition.
Mr. Pallone. All right. I am trying to speed up here
because I wanted to ask you----
Dr. Howard. Right.
Mr. Pallone [continuing]. A few more things. Have there
been any problems with misdiagnosis or improper treatment of 9/
11-related health conditions when individuals have relied on
their personal physicians?
Dr. Howard. Not that I am aware of.
Mr. Pallone. OK.
Dr. Howard. Within the program, of course, we have a
quality assurance where we look at all of the care that is----
Mr. Pallone. OK. And can you just discuss briefly how the
Clinical Centers of Excellence coordinate the care delivered to
responders and survivors at the centers, with care delivered by
their personal medical providers outside the centers, briefly?
Dr. Howard. Sure. As many of you know, the World Trade
Center Health Program is a hybrid program. It is not your
normal health plan where you go in and everything that you may
complain about relative to your body, a physician takes care
of. We have a limited number of conditions. So many conditions
we don't cover, so you have to see an additional physician,
your personal physician. So that coordination is done in the
CCEs so that if those CCE physicians see a condition that we do
not cover, then appropriate referral is made.
Mr. Pallone. OK. Now, let me just--I am going to try to
summarize this last question. My concern, obviously, is that I
don't want this program terminated before we have an
opportunity to reauthorize it, and that is why we are having
this hearing and trying to move quickly. But in preparation,
you know, if reauthorization legislation is not signed into law
by September of next year, the program is terminated. And in
preparation for termination, or possible termination, I
understand that HHS has certain notice requirements you would
have to follow. Can you just tell us, you know, what you would
have to do? I mean, obviously, this isn't what we want to
happen, but I want to stress that, you know, there is always
that danger.
Dr. Howard. Well, it would be a nightmare for me
personally, and it would be a nightmare for our members, it
would be a nightmare for our CCE physicians. You cannot abandon
a patient ever as a care provider. So we must ensure that that
patient is taken care of somewhere, and finding a place for
each of our 71,942 members would be a gargantuan task.
Mr. Pallone. And there are notice requirements. How--when--
--
Dr. Howard. Yes. We have to inform our patients ahead of
time that this may happen, even though we may not be sure that
it is happening, and certainly when it happens, and all of the
efforts that we can make to help them support their efforts in
finding additional----
Mr. Pallone. But when does that process begin? Like do you
have a term notice requirement?
Dr. Howard. Well, the 90-day time limit is sort of an
unwritten notice requirement now. It can vary State by State
because these are often State laws, but we have to go back and
look--since we have members from every State, we would have to
look at every State's abandonment requirements.
Mr. Pallone. All right. Thank you very much.
Thank you, Mr. Chairman.
Mr. Pitts. The Chair thanks the gentleman.
Now recognize the gentleman from Kentucky, Mr. Whitfield, 5
minutes for questions.
Mr. Whitfield. Well, thank you very much. And, Dr. Howard,
thank you for being with us this morning.
I want to just follow up briefly. When we think about
health care systems, frequently people all work with some
company that provides health care, or with Medicare, you have
to be over a certain age, and Medicaid, income below, the trio
of Tricare. So here, the common element is people from around
the country, whether emergency responders or volunteers, came
to respond to this emergency in New York, this disaster on 9/
11. And you touched on the criteria. I think you have indicated
there are 71,000-plus members enrolled in this program. And is
it still eligible--if I am someone that worked there during
that time, would I still be able to enroll today if I am not
enrolled right now?
Dr. Howard. Yes, sir, you would be. And we hope that anyone
listening who is not enrolled in our program, who may be
eligible, will call our eligibility line and sign up for our
program.
Mr. Whitfield. OK. And I won't get into the details, but
the criteria for eligibility, I am assuming you had to have
been there X-days and--is that correct?
Dr. Howard. Right. They are very detailed eligibility
requirements spelled out in the Act itself.
Mr. Whitfield. And does your office make the decision on
whether or not a person is eligible or not?
Dr. Howard. Yes, sir.
Mr. Whitfield. OK. Now, of the patients that you are caring
for right now, what percent of them would you say--or maybe you
don't have this information--had an insurance program already,
they were already covered under?
Dr. Howard. Well, first of all, even if you had health
insurance----
Mr. Whitfield. Right.
Dr. Howard [continuing]. As a responder, you would not be
able to use that insurance because health insurance does not
cover work-related issues. For instance, if you have ever gone
in for an MRI or a CT scan, at the bottom of that form it will
say, ``Is this a result of an auto accident, is this a result
of a work accident?'' If it is, the health insurer will not pay
for it; they will refer you to other insurances. For survivors,
then health insurance could be an issue, and then we recoup as
much as we can----
Mr. Whitfield. Um-hum.
Dr. Howard [continuing]. From the health insurer.
Mr. Whitfield. Well, what percent would have been covered
under, say, the Workers' Compensation Program?
Dr. Howard. Well, theoretically, work-related injuries and
illnesses would all be covered, but there are great
difficulties for responders in accessing Workers' Compensation
benefits because oftentimes their condition, not the original
conditions where, on the event, someone had an acute injury and
it happened within a short period of time, but some of our
diseases in our program, their onset are years later, and a lot
of statutes draw a line----
Mr. Whitfield. Um-hum.
Dr. Howard [continuing]. And say no----
Mr. Whitfield. Um-hum.
Dr. Howard [continuing]. That is beyond our statute of
limitations, we will not cover something that started----
Mr. Whitfield. Um-hum.
Dr. Howard [continuing]. Five years later. So many of our
members are in that situation.
Mr. Whitfield. So would it be unusual that Workers' Comp
may pick up part of it and then this program would pick up--
sort of playing a supplemental role, or----
Dr. Howard. It is not unusual. It is--many of our members
have had Workers' Compensation benefits given, and we are in
the process of recouping----
Mr. Whitfield. Right.
Dr. Howard [continuing]. From Workers' Compensation.
Mr. Whitfield. Um-hum.
Dr. Howard. But it is not the majority, or even near the
majority of our members.
Mr. Whitfield. Um-hum. We know some people have indicated
early on, I remember when there was first discussion about
this, that this was sort of a unique program, but I know that
there are health programs in effect for employees at Savannah
River, Paducah, Oak Ridge, and so forth, which is kind of
similar to this because those workers were exposed to certain
elements many of them were not even aware of, and they came
down with a lot of different cancers. And so those programs are
similar to this program, would you say?
Dr. Howard. Yes, sir. And, in fact, we administer the
Energy Employees Occupational Illness Compensation Program,
together with the Department of Labor and the Department of
Energy. It is a program that bears a lot of similarities to our
program at the World Trade Center.
Mr. Whitfield. Yes. And so if you worked at the World Trade
Center and you are covered, and you have 1 of, say, 12 or 14
illnesses that you all have set out, is there a presumption
that, since you were there and exposed, that you would be
covered under this program?
Dr. Howard. Not a presumption. A physician, not in the
administration of the program, but in our Centers of
Excellence, would examine you, take your history, and make the
connection between the exposure history that you give that
physician and that health condition, and they and they alone
say I think the 2 are connected.
Mr. Whitfield. Right. Well, thank you very much for the
great job you do at NIOSH.
Dr. Howard. Thank you.
Mr. Pitts. The Chair thanks the gentleman.
Now recognize the gentleman from Oregon, Mr. Schrader, 5
minutes for questions.
Mr. Schrader. My questions have been answered, Mr.
Chairman. Thank you.
Voice. Ms. Castor.
Mr. Pitts. All right, then the Chair recognizes the
gentlelady, Ms. Castor, 5 minutes for questions.
Ms. Castor. I want to thank you, Mr. Chairman, for calling
this hearing. And I would like to thank all of the first
responders and survivors, and the medical professionals who
take care of them, for traveling here to Capitol Hill to
encourage the Congress to provide some continuity and certainty
in the World Trade Center Health Program. I would like to thank
my colleagues, especially from New Jersey and New York,
Congressman Pallone and Congressman Lance, you all have been
champions on this committee for this endeavor, along with
Congresswoman Clarke and Congresswoman Maloney, I see
Congresswoman King I think was still here, and the entire New
York delegation, especially.
I strongly support the James Zadroga 9/11 Health and
Compensation Reauthorization Act because it will provide that
important certainty and continuity of care from this point
forward. And when you--it is interesting to see the list and
understand that there are first responders and survivors from
the World Trade Center terrorist attacks all across America
now. And Florida comes in right behind New York and New Jersey.
So it will be very important, and I think that the folks that I
represent back home will be strongly in support of taking care
of their neighbors who were there on September 11, and the
weeks, months, and years afterwards. It is vital that we
continue this specialized care for all of our neighbors, and
all of the brave folks who were there on September 11.
So, Dr. Howard, thank you for being here today. One of the
important parts of the World Trade Center Zadroga Health
Initiative that often gets overlooked is the funding provided
for research into 9/11-related health conditions. Between
fiscal year 2011 and 2014, the program funded 35 projects to
investigate questions about 9/11 related to physical and mental
health conditions. Could you provide examples of the research
that has been funded by the Zadroga Act?
Dr. Howard. I would be happy to. We are very grateful for
the original drafters of the legislation to provide money for
research into the health conditions that our members face. And
as I mentioned before, we have already learned quite a bit from
that research. And I would like to highlight just one aspect of
it, in addition to mental health and respiratory and
cardiovascular, and our cancer research, our research in
autoimmune diseases and others, is the research that we have
done on individuals who were children at the time of 2001
attacks. There were a number of elementary schools and
Stuyvesant High School, for instance, that were immediately
impacted. And we have a number of those projects that are going
on now, about 7 that are funded, and we are learning the
effect--effects on developmental issues in the children's
population. To date, we have funded $88.5 million worth of
research, and we have a significant body of research that is
published in peer review journals. The World Trade Center
Registry alone has published about 60 papers, and our various
clinical researchers at our clinical centers have published the
other papers. Our pivotal papers in cancer, autoimmune
diseases, asthma, and other respiratory disorders have allowed
us to provide better care, more focused care for our members.
Ms. Castor. And are these--the results of the research, are
they disseminated in an organized way to the providers and the
families so that they have access----
Dr. Howard. Yes.
Ms. Castor [continuing]. To all of that information?
Dr. Howard. We have membership newsletters that highlights
various findings that we have from research so that they know.
All of our papers are published on our--on the World Trade
Center Health Program's Web site. And, of course, these are all
peer reviewed publications so they appear in the science
journals. And I am happy to say that the New York media picks
up on those papers and reports them probably more effectively
and more widely than we can on our Web site.
Ms. Castor. So if the Zadroga Act is not reauthorized, will
these research efforts come to an end, and explain to me why
that would be harmful?
Dr. Howard. They would cease altogether, and we would lose
one of, I think, the most important advantages to the program
to our society, is looking at the long-term health effects from
9/11.
Ms. Castor. OK. And you testified earlier that health
conditions often manifest themselves years later. The Zadroga
Act provided funding for outreach efforts to individuals who
may be eligible. We are now several years into the existence of
the program, and you have successfully enrolled more than
71,000 responders and survivors. It seems to me that in
addition to outreach, the continuity of care and retention of
members will be important to protecting the health moving
forward. That is why the Reauthorization Act here clarifies
that funding may be used for continuity of care and retention.
Give me your opinion on why efforts on continuity of care and
retention of members will be important moving forward.
Dr. Howard. Well, as you say, you know, our program
overall, since its inception in July of 2011 with the Zadroga
Act, has grown about 18 percent overall in membership, and we
credit that to the wonderful contractors that we have who have
done recruitment. But the other side of that is once you
recruit a patient into our program, we want them to remain in
our program. And every health plan loses members because we do
not go and do outreach to retain them. So that is on balance
now after our first 5 years. We hope to emphasize, in what we
hope is our second phase, that retention of our patient
population is as important as their original recruitment.
Ms. Castor. And how do you propose to do that for first
responders and survivors outside of the New York/New Jersey
area, say, in the State of Florida?
Dr. Howard. I think, first of all, you know, we do things
as a team. We sit down with our representatives from survivors
and responders. We have a Responder Steering Committee which is
very active, meets every month, and we have a Survivors
Steering Committee that is very active and meets every month.
All of our ideas, suggestions, we go to them and say how are we
going to do this, and together as a group we figure out how to
do it. There are many modalities that we could use, and
oftentimes we are told by our members what is the most
effective.
Ms. Castor. Thank you very much, sir.
I yield back.
Mr. Pitts. The Chair thanks the gentlelady.
Now recognizes the gentleman from Texas, Dr. Burgess, 5
minutes for questions.
Mr. Burgess. Thank you, Mr. Chairman. Thank you for having
the hearing. Dr. Howard, thank you very much for being here
today. And to all our witnesses on the second panel, thank you
for your participation, and the people who are here in
testament to the work that you have done. I also feel obligated
to recognize the work of one of our colleagues, a former
member, Vito Fossella, who was on this committee with us and,
in fact, was responsible for my early interest in this shortly
after I arrived in Congress in 2003. And it was because of that
interest that I did become an early supporter of Representative
King's work on this. And, in fact, I was the one who ran the
bill on the floor in the waning days of the 111th Congress, in
that late lame duck session in December when the bill finally
did pass on the floor of the House.
But, Dr. Howard, I am interested in--you said in your
testimony that you provided for us today that certain types of
cancer were added to the list of health conditions covered
under this Act. Could you share with us what those cancers--
what types of cancers those were--are?
Dr. Howard. Yes. Currently covered in the program are every
type of cancer, is just the short way to approach this--every
type of cancer except uterine cancer.
Mr. Burgess. Are there--but are there those that are more--
I mean what are some--what--if you were to pick the top 3
malignancies, what would those be?
Dr. Howard. I think if you looked at our 4,000 or so cases
right now, probably the top ones would be thyroid cancer. There
are 5 common cancers that Americans get, skin being the one
that is our top cancer. There is breast cancer, that is also a
top cancer for us. There is colon cancer, which is a top cancer
for us. Thyroid cancer is another cancer for us. But we have
seen a lot of very common cancers like that, and we have also
seen some very rare-type cancers, and oftentimes, from an
epidemiological basis, the appearance of rare cancers is
extremely helpful in terms of doing research on a population to
figure out what their exposures are, causing rare cancers.
Mr. Burgess. Sure. That speaks then also to the value in
having people who have expertise in treating the types of
injuries encountered because an uncommon cancer can be a
difficult diagnosis to which to arrive.
Dr. Howard. Exactly. And if they--if this cohort were
distributed, we would not be able to count those. It would be
very hard to find all those rare cancers if they were not--if
the patients were not seen in our clinical centers, and rather,
they were seeing their own personal physicians throughout the
United States. It would be very difficult to do that.
Mr. Burgess. So it provides a focus that otherwise would
not be available. Just as far as just a brief comment, if you
will, on the observed versus the expected cancer rates of the
population that you are following, is this number of--I guess I
calculate it to be 6 percent based on the number of patients
you are following and the cancers you reported, how does that
stack up to the general population?
Dr. Howard. Well, that comparison, I am afraid, we can't do
at this time. That would be something that we would have to
wait and see what our researchers could come up with in giving
us that kind of number. We are now looking at, and the Fire
Department of New York City is doing some research using as a
referent population to compare our World Trade Center
firefighters to, another cohort that was assembled by the
Institute of Firefighters not involved in World Trade Center--
--
Mr. Burgess. Great.
Dr. Howard [continuing]. So we hoped that line of research
could answer your question someday.
Mr. Burgess. So it would give them a better control if you
age-match for people who are in similar occupations.
Dr. Howard. Yes, sir.
Mr. Burgess. Just switching gears a little bit, and you
mentioned also in your testimony that, you know, you are trying
to aid not just the individual members, but help grow the body
of evidence and the body of information so that you can help in
other situations. Are you going to be able to provide feedback
to municipalities and boroughs as to the type of Workers'
Compensation coverage that may be provided to members of the
firefighting community, or the type of health insurance that is
provided? Some of the shortcomings you mentioned were in--
within the Workers' Compensation system. Are there lessons you
have learned that can be extrapolated to other communities?
Dr. Howard. Well, certainly, and I think New York State
itself, its legislature and Governor have already responded to
this issue significantly by providing a mechanism by which
responders, survivors can sign up to a program. They don't have
to actually make a claim, but they can register, and then if
they should develop a condition later on, that their claim
would not be beyond the statute of limitations. So other States
have also looked at that, and we hope that people will learn,
especially from these long-duration disasters.
Mr. Burgess. Thanks, Mr. Chairman. I will yield back.
Mr. Pitts. The Chair thanks the gentleman.
Now recognize the gentlelady from Illinois, Ms. Schakowsky,
5 minutes for questions.
Ms. Schakowsky. Thank you, Mr. Chairman. I too would like
to thank all of the first responders, the survivors, those who
treat them, for coming here today. For the first responders and
the survivors, I am sure in addition to some health conditions
that maybe more visible, that the trauma of the incident and
the loss of friends, coworkers, family, is something that
lingers on forever really.
In Illinois, Dr. Howard, there are 13 first responders, and
between 1 and 9 survivors, the way the data is kept, it is
between 1 and 9, enrolled in the World Trade Center Health
Program. So clearly, there is no concentration of those
individuals in any kind of program of nationwide providers. So
I imagine there are physicians that have 1 or 2, et cetera, so
how do you maintain that--the cohesiveness of that network?
Dr. Howard. I think that is a very good question, and I
think there are a couple of ways that we do that. First of all,
our Nationwide Provider Network is headed by a very capable
physician who is a part of our New York-based Centers--New York
and New Jersey-based Centers of Clinical Excellence. So he
participates in all of our meetings, and is a great educator
and teacher for the cadre of physicians that do monitoring and
evaluation of that population. As you point out, a physician
may have only 1 or 2. Those physicians themselves are
occupationally trained, so they have the same kind of training
to be able to connect exposure and health conditions as
similarly situated physicians at our clinical centers.
As I mentioned, we are also trying to--we have been very
pleased that Medscape is helping us put together constant
training, so to speak, 24/7, you can go to their Web site and
get information about the latest findings from the program that
may influence your practice. So even though we have a
distributed network, and even though those physicians in the
Nationwide Provider Program may have, as you say, 1 or 2
patients, they are seeing, we want to--we want them to be as
similarly situated knowledge-wise as the rest of our
physicians.
Ms. Schakowsky. Great, thank you. So my understanding of
the data is that there are a total of 71,000 people, or
approximately, that are in the program. And then it says, in a
factsheet I have, that more than 30,000 responders and
survivors have at least 1 World Trade Center-related health
condition. So there are some people in the program, I gather,
that are--more than half, that are simply--not simply, but that
are being monitored. Is that the difference in number?
Dr. Howard. Yes. We offer monitoring and treatment. So if
you are in the monitoring program and you do not have a health
condition that is included for coverage in our program, then
you come on a periodic basis for monitoring. So you are not in
treatment. There is no condition that a World Trade Center
Health Program physician has connected to your exposure. So
they are----
Ms. Schakowsky. But the----
Dr. Howard [continuing]. Continuing to be monitored.
Ms. Schakowsky. But the monitoring is done within the
network, and there is not an additional cost to that individual
for the----
Dr. Howard. Yes.
Ms. Schakowsky [continuing]. Monitoring.
Dr. Howard. No.
Ms. Schakowsky. OK.
Dr. Howard. Our members bear no costs.
Ms. Schakowsky. So the population that you serve includes
some number of families of--or spouses of firefighters. Some
are in that program. Survivors that may be workers in the area,
residents, students, daycare, participants, et cetera. I am
wondering what the breakdown is between first responders and
then survivors.
Dr. Howard. In terms of enrolled members in our program? So
currently, total enrollment of the population, as you say, is
71,942. General responders, which would be police, construction
workers, volunteers that came from all over----
Ms. Schakowsky. Firefighters.
Dr. Howard [continuing]. The United States, is about
38,953. Our fire department members are 16,569, which leaves
8,133 survivors in that 71,000.
Ms. Schakowsky. Does anybody leave the program? Aside from
this issue of reenrollment, so do they have to reenroll every
year?
Dr. Howard. I am sorry?
Ms. Schakowsky. Do they have to reenroll?
Dr. Howard. No, no, no, you are enrolled once in our
program.
Ms. Schakowsky. Does anybody leave?
Dr. Howard. I hope not, but I do not know that for a fact.
We have members who have passed away----
Ms. Schakowsky. Well, that is certainly----
Dr. Howard [continuing]. But leaving--they may go to
their--as has been said by Representative Pallone, they may go
to their private physician to obtain health care for other
nonrelated conditions.
Ms. Schakowsky. Thank you very much.
Mr. Pitts. The Chair thanks the gentlelady.
Now recognize the gentleman from New Jersey, Mr. Lance, 5
minutes for questions.
Mr. Lance. Thank you, Mr. Chairman.
I don't have any questions, but I want to thank you for
what you are doing, Dr. Howard. I want to thank Congressman
Pallone who has worked on this issue over the course of the
last more than a decade, and all of the Members of the Congress
who recognize the importance of reauthorization of this
legislation.
This is a bittersweet hearing for me. New Jersey lost more
than 700 residents. My son was playing freshman high school
football, and he had a teammate whose father didn't come home.
I lost a Princeton classmate in the South Tower, and my story
is similar to the stories of many.
I think the best speech that the younger President Bush
ever delivered was on September 14 at the National Cathedral
where he said that this world God created is of moral design.
Grief and tragedy and hatred are only for a time. Goodness,
remembrance, and love have no end. And he concluded by
paraphrasing St. Paul to the Romans that no evil can separate
us from God's love. What you have done is based on goodness,
remembrance, and love, and that is certainly true of the first
responders. And I thank all of the first responders, and I am
sure this legislation will pass unanimously here, in the full
committee, and on the floor of the House.
Mr. Chairman, I yield back the balance of my time.
Mr. Pitts. The Chair thanks the gentleman.
Now recognize the gentleman from New York, Mr. Engel, 5
minutes for questions.
Mr. Engel. Thank you very much, Mr. Chairman. And, you
know, I too--there are none of us that represent New York or
New Jersey and the surrounding area that wasn't deeply
affected. There are 1,851 people in my district who are program
beneficiaries of all you do, Dr. Howard, so we are very
appreciative of it.
You have answered some of my questions, but I want to try
to bring out certain other things. Many of us in the
aftermath--Mr. Lance just mentioned that the Friday after the
Tuesday of the attacks, many of us in the delegation went to
the site of the attacks. It was surreal. You just scratched
your head and you couldn't believe you were really--it was like
a nightmare; you couldn't believe you were really living it,
and then you kind of realized every few seconds this is real.
And so we walked around--other people walked around, we really
weren't wearing the masks. They did give us masks but didn't
really make it seem as if it was that important, so I bet a lot
more people got exposure. I mean I went back several times. I
don't have any ill effects, thank God, but people who are now
starting to get effects, do we have trouble tracing it back
to--is it difficult for people to prove so many years later
that their illnesses are a result of exposure they got at the
World Trade Center site?
Dr. Howard. It is difficult. It is difficult for any of us
to recall exact details of what we did a month ago, a year ago,
let alone this many years ago. So for new members coming in our
program, a lot of the questions that we ask about their
exposure is--they are very difficult to answer. Recall is
imperfect in all of us, but we take that into consideration in
terms of the questions we ask and the answers they give us.
Mr. Engel. First of all, Doctor, thank you for the great
work you do. Really great work. It makes me proud to have been
an original cosponsor of this legislation, and I think in all
the years I have been in Congress, I have never seen our
delegations more united on 1 thing, particularly the New York
delegation. Since the program has been continuing, and
obviously when things continue, you see what works, what
doesn't work, you make adjustments, what would you change in
the program? What have been some of the things that you have
found difficulty with that perhaps we should consider modifying
or changing to make it more efficient?
Dr. Howard. Well, I don't think that we have found anything
in the Act that has been a showstopper for us in administering
the program. We look at all of the items in the Act as helping
us, and we consider the Act to be a well-written document that
has given us a roadmap and, as for so many years, for over a
decade, we had no authorizing language, so we made it up as we
went along, together with our Clinical Centers of Excellence.
So we are extremely happy to have this authorizing outline for
us.
Mr. Engel. How much flexibility exists with regard to the
World Trade Center Health Program's eligibility requirements?
For example, if someone meets 9 out of 10 benchmarks but is
desperately in need of care, can exceptions be made to ensure
that care gets to those who need it? How does that work?
Dr. Howard. We look at every case on a case-by-case basis.
As I said, you know, recall is not perfect this many years
later, and we take that into consideration. We only decide that
somebody is not eligible when we are absolutely certain that
they do not fit any of the stated criteria in the Act. If we
err at all, it is on the side of including someone in the
program.
Mr. Engel. In your written testimony, you noted the work
that has been done through the World Trade Center Health
Program to--work has been done to understand the impact that 9/
11 had on children, and I understand that the program has
funded research projects to specifically examine the effects of
9/11 on the physical and mental health of children and
adolescents. Can you talk a little bit about that?
Dr. Howard. Well, first of all, we are very privileged to
have a number of researchers in New York who are interested in
this area of pediatric research for 9/11. And as I say, we have
7 projects that are funded in this area. They have not been
completed as yet, so we are looking forward to those findings,
so I can't report today about what those studies are showing,
but it is important that the--that we have them and they
continue, and we are very privileged to have a very--a couple
of very good researchers working on that.
Mr. Engel. Thank you, Doctor. And again, thank you for all
you do and we are really very, very grateful to you. It affects
those of us in the New York area every single day and our
constituents are grateful. Thank you.
Mr. Pitts. The Chair thanks the gentleman.
I understand Dr. Bucshon doesn't have any questions. The
Chair recognizes Mrs. Brooks from Indiana 5 minutes for
questions.
Mrs. Brooks. Thank you, Mr. Chairman.
Dr. Howard, I am a former deputy mayor of Indianapolis in
the late '90s, and we hosted the World Police and Fire Games in
the summer of 2001, before the 9/11 attack, and there were many
New York, New Jersey firefighters and police officers who
perished in the attack--New York firefighters and--who perished
that had participated in those games. But we also had a group
called Taskforce 1 that traveled from Indiana to the World
Trade Center, and we have--I have since learned, because of
this hearing, that we have 53 people in the State who
responded. I have 12 in my particular district, and I want to
pay particular tribute, as other colleagues have done, not only
to all of those from New York and New Jersey but people like
individuals from Taskforce 1, engineers and technical experts
and their search dogs traveled immediately that day, and
continued to operate around the clock with all of their
brothers and sisters in New York.
There was a story several years ago about an Indianapolis
fireman and a member of Taskforce 1, Charlie Gleason, who was
deployed, and he said in that TV story, he said, and I quote,
``He got a little bit of that World Trade Center cough'' from
that mix of the fumes, and--but he said that he would gladly
answer the call again. And I understand the risk, but we have
to take care of the men and women that are going, and that
continue day in and day out to risk their lives for fellow
citizens. And I want to thank you and all of the men and women
who are here today for their service, and all the men and women
around the country who did answer that call.
I would like to ask you what you lose sleep about with
respect to this program, what are your greatest challenges, you
have answered incredibly well so many questions posed to you,
but what would you say are the greatest challenges facing this
program that we must reauthorize, and how do you plan to
respond to those programs----
Dr. Howard. Well, the----
Mrs. Brooks [continuing]. Or to those challenges?
Dr. Howard. The biggest thing that worries me is that I
would have to spend any amount of time, waste my time closing
the program as opposed to growing the program.
Mrs. Brooks. And the manner in which you plan to grow the
program, how do you plan to do that?
Dr. Howard. I think, you know, one of the issues that we
have faced in the program, and I think I can speak for all of
our Clinical Centers of Excellence, directors, and our
Nationwide Provider Network, is when the bill passed, the
President signed it on January 3, 2011, we had to be up and
running July 2011. It was a very short implementation time. By
a lot of work, by a lot of people, we were able to open our
doors on July 1, 2011. But I think what we have done over the
last 5 years, and we hope to continue to do, is quality
improvement of the services we offer. Our pharmacy benefit
plan, for instance, and other support for our members. We want
to receive their input so that we can continue to improve the
program.
Mrs. Brooks. Thank you. Thank you for your service.
I yield back.
Mr. Pitts. The Chair thanks the gentlelady.
Now recognize the gentleman from New York, Mr. Collins, 5
minutes for questions.
Mr. Collins. Thank you, Mr. Chairman. And I too want to
recognize all our first responders here. I think any time you
come, as you have, it just helps Members of Congress in what we
know is going to be a bipartisan support, as previously stated,
to unanimously pass this reauthorization.
But first of all, Mr. Chairman, I would like unanimous
consent to enter into the record a statement from
Representative Dan Donovan who represents Staten Island and a
portion of Brooklyn.
Mr. Pitts. Without objection, so ordered.
[The information appears at the conclusion of the hearing.]
Mr. Collins. And I would also like to recognize
Representative Peter King that is with me today, and thank Dr.
Howard for all you have done. You have pretty much answered, I
think, most of our questions. I represent 105 towns of western
New York in the Buffalo, into the Finger Lakes area, and I
believe probably most, if not all, of our volunteer fire
departments--and we are mostly volunteer; we have 1 paid fire
department in my district--sent individuals down to Ground
Zero. That is what firefighters do and first responders. It is
the community of brotherhood, and I am just happy to have
learned more today about how those individuals are more than
likely in your program being monitored, and I think, again, in
a bipartisan way we are with you, and you are doing great work.
And I don't believe you are going to have to lose any sleep
about shutting this program down.
With that, Mr. Chairman, I would like to yield the
remainder of my time to Representative King if he would have
any comments that he would like to add.
Mr. King. If that is appropriate?
Mr. Pitts. The Chair recognizes the gentleman.
Mr. King. Thank you, Mr. Chairman. And I do appreciate the
opportunity of you allowing me to sit in and take part in the
hearing. And I thank the gentleman from Upstate New York, Mr.
Collins, for yielding time.
I would just like to say that there is probably no more
important bill that we have passed during the time, you know,
that I have been in Congress than this 9/11 Zadroga Act. I had
about 150 fatalities from my district, but more than that, I
see every day to this day people still have rare lung diseases,
respiratory illnesses, blood cancers, so this is something that
is absolutely necessary to continue. And I know that people may
find this might be wrong or that might be wrong, the fact is
this is as effective as any program I have seen since all the
time I have been in Congress, and it provides a need which is a
lasting need. It is absolutely essential to go forward, and I
want to thank all these men and women who are here today, the
first responders, FDNY, NYPD, construction contractors, I saw--
before certainly, you know, people who are residents of the
area, and really everyone who answered the call that day,
everyone did what they had to do, and those who are suffering
these illnesses, people in the prime of life who have, again,
lost their jobs, have these debilitating illnesses which have
changed their lives so radically, all because they did what had
to be done.
So again, I thank the chairman for holding this hearing. I
thank the committee for taking this issue up. I thank all of
you for being here today. And I certainly thank Mr. Collins for
yielding me the time. And I yield back to him. Thank you, Mr.
Collins.
Mr. Pitts. The Chair thanks the gentleman.
And now recognize the gentlelady from North Carolina, Mrs.
Ellmers, 5 minutes for questions.
Mrs. Ellmers. Thank you, Mr. Chairman. And thank you, Dr.
Howard, for being with us. And I too want to thank all of the
first responders who are here today.
You know, a very emotional subcommittee hearing, and so I
am going to try hard to stick to the information and get into
some of these questions. Along the lines of where we are today,
and I know that you have already stated, Dr. Howard, that as
the number of affected first responders have come forward,
those who have been determined to have cancer, how many are in
existence right now? How many are with us? What number do you
have of potentially affected patients who have a diagnosis of
cancer?
Dr. Howard. Well, right now, we have about 3,400 cases of
cancer--individual cases of cancer. Some of those cases may
represent an individual that may have more than 1 cancer----
Mrs. Ellmers. Um-hum.
Dr. Howard [continuing]. But generally speaking, that is
the number of members that we have who we are--we have
certified with cancer.
Mrs. Ellmers. Now, as far as the certification process, I
am just curious as to how you determine approval or denial and,
you know, do you have numbers that play out as far as the
possibility of being approved or denied?
Dr. Howard. Sure, and let me just briefly explain the
process. The physician who is seeing the patient makes the
connection between their exposure and the health condition, in
this case, cancer.
Mrs. Ellmers. Um-hum.
Dr. Howard. So they can say that it is caused by,
contributed to, or aggravated by their exposure. That is the
determination that is made by the physician.
Mrs. Ellmers. I see.
Dr. Howard. We don't make it in the program. That is an
independent view that the physician has. Then they submit it to
us----
Mrs. Ellmers. Um-hum.
Dr. Howard [continuing]. And we make sure that all of the
supporting information is there, and then we certify it. If the
supporting information isn't there, we have a question, we go
back and forth----
Mrs. Ellmers. Um-hum.
Dr. Howard [continuing]. Until we are all absolutely sure,
including the determining physician and us that this is a case
to be certified. Certification then means that you get your
cancer covered for health care.
Ms. Ellmers. Um-hum. And having the concentration on cancer
leads me to the next question, which is, Do you anticipate
adding other possible diseases outside of the cancer realm?
Dr. Howard. Well, we have received to date 7 petitions----
Mrs. Ellmers. Um-hum.
Dr. Howard [continuing]. For requests adding conditions.
Two of those were cancer. The original cancer petition that
Chairman Pitts referred to----
Mrs. Ellmers. Um-hum.
Dr. Howard [continuing]. 001, and then soon after that we
had a petition with regard to prostate cancer, and then 5
others. With the 5 others, we did not find sufficient
scientific evidence----
Mrs. Ellmers. Um-hum.
Dr. Howard [continuing]. To support their addition. We get
quite a few requests for adding conditions. It is hard to
estimate----
Mrs. Ellmers. Um-hum.
Dr. Howard [continuing]. What conditions we would add in
the future, but we evaluate each of those requests on their
scientific basis.
Mrs. Ellmers. And then in regard to autoimmune diseases, I
understand that you have made a determination that those would
not be identified or added.
Dr. Howard. Right.
Mrs. Ellmers. And can you just expand on that?
Dr. Howard. Right. We received a petition, our last
petition, to add a large number of autoimmune diseases to our
statutory list. We reviewed all of the information, including
the very excellent study that had recently stimulated that
petition by FDNY----
Mrs. Ellmers. Um-hum.
Dr. Howard [continuing]. And we found that it was
insufficient at this time.
Mrs. Ellmers. Um-hum. Um-hum.
Dr. Howard. It doesn't mean that--and this is why we are--I
emphasize so much the importance of research----
Mrs. Ellmers. Um-hum.
Dr. Howard [continuing]. Funding in this program, is the
additional work that is going on by other CCEs and our World
Trade Center Health Registry to look into that----
Mrs. Ellmers. Um-hum.
Dr. Howard [continuing]. Issue. So it doesn't mean that
forever and ever----
Mrs. Ellmers. Right.
Dr. Howard [continuing]. It will not be added, but at this
time----
Mrs. Ellmers. Um-hum.
Dr. Howard [continuing]. We are not adding it.
Mrs. Ellmers. Well, thank you, Dr. Howard. I do appreciate
all of the information that you have helped us with, and I am
glad to know that this is considered to be an ongoing process
into the future, because we don't know what the future holds
for this. And again, God bless all of the first responders who
are here, and your families. Thank you so much.
I yield back.
Mr. Pitts. The Chair thanks the gentlelady.
Now that all the members of the subcommittee have had an
opportunity to ask questions, with unanimous consent I ask that
the member of the full committee, Ms. Clarke, be given 5
minutes for questioning.
The Chair recognizes Ms. Clarke.
Ms. Clarke. Thank you very much, Mr. Chairman. We have been
joined here by Congressman Gerald Nadler of New York, original
sponsor of the Zadroga Act, and I wanted to yield some time to
him if it is----
Mr. Nadler. I thank you for yielding, and let me thank the
chairman for holding the hearing, and the members.
I simply want to say that as someone who is one of--along
with Mr. King and Ms. Maloney, was one of the 3 original
sponsors of this bill, we struggled for years and years to pass
it, I am glad to--and the history has proven the necessity of
this bill, and I want to thank Dr. Howard for his wonderful
service. I am glad that the chairman has called this hearing,
and that, judging from the comments at the hearing, there seems
to be a lot of bipartisan support for extending this bill. We
know the necessity of that so I just want to urge that that be
done, and that--and I thank the chairman and the committee
again. Extension of this bill is essential because the diseases
won't go away, and this is for both the first responders and
the survivors in the community. And so I urge the extension of
the bill.
I thank Ms. Clarke for yielding, and I yield back to her.
Ms. Clarke. Thank you.
Dr. Howard, just following up on a couple of the questions
that Mrs. Ellmers asked about the conditions. For the record,
what is the process by which you can add new conditions to the
program?
Dr. Howard. Well, first of all, the administrator has the
ability to add a condition on his or her own motion. The other
very common route that we have seen so far is the public can
petition the administrator to add a condition. As I said, we
have received 7 petitions so far; 2 of those we have added the
condition, the first one being cancer, the second one being a
particular type of cancer; prostate cancer. The other 5 we have
found insufficient evidence for.
Ms. Clarke. I understand that the statute outlines specific
timing requirements for you to respond to those petitions.
Could you describe that for us?
Dr. Howard. Right. The administrator has 60 days to respond
to a petition, unless the administrator refers the petition to
our Scientific and Technical Advisory Committee, and then the
time frame is 180 days. So for the--for instance, in terms of
the first petition on cancer, we referred that to our Science
and Technical Advisory Committee. They had 180 days to make
their decision.
Ms. Clarke. Do you have any concerns with the statutory
time frames under which you would have to respond to such
petitions?
Dr. Howard. Well, one of the things that the GAO report
pointed out in their review of our cancer petition and--or
addition of cancer was that there was no external peer review
of our science that we used to justify the addition of cancer.
We believe in peer review very, very much, and we want to do
external peer review, but the time frame of 60 days was just--
given the enormity of the task of adding all those numbers of
cancers, that was a very short period of time, so we were
unable to engage in external peer review.
Ms. Clarke. Very well. Can you briefly tell us about the
registry? It is our understanding it was created to follow
individuals who were exposed to environmental toxins related to
the World Trade Center terrorist attack. Tell us a bit more
about the registry and why it is important--an important tool
for studying the WTC-related health effects.
Dr. Howard. The World Trade Center Health Registry, which
is operated by the New York City Department of Public Health
and Mental Hygiene is a vital participant in the research
aspects of the program. They started very soon after 9/11. They
have, interestingly enough, about 71,000 members also, and I
might add, I was told by the director last week that they have
registrants in the registry from every congressional district,
all 435. And they have produced almost 60 papers in this area.
They followed the same people over periods of time, so they--
every so many years, they study them to figure out what their
experience is. So their research is vital to this program.
Ms. Clarke. Do we have a sense of any of their findings so
far?
Dr. Howard. All of their findings are not only on their Web
site, but also on ours. And I think some of the things that we
have learned already, the issues about asthma, mental health,
persistent PTSD, et cetera, have come largely from the World
Trade Center Health Registry studies.
Ms. Clarke. So you think it is important that we continue
our work?
Dr. Howard. It is absolutely vital.
Ms. Clarke. I thank you very much, Dr. Howard.
And I yield back. Thank you, Mr. Chairman. And I thank the
ranking member.
Mr. Pitts. The Chair thanks the gentlelady.
That concludes the questions of members who are present.
I am sure, Doctor, we will have follow-up questions from
members. We will send those to you in writing. We ask that you
please respond promptly.
Dr. Howard. Thank you, Mr. Chairman.
Mr. Pitts. Thank you.
That concludes our first panel. We will take a 3-minute
recess as the staff sets up the witness table for the next
panel.
Committee stands in recess.
[Recess.]
Mr. Pitts. All right, the time of recess having expired, we
will reconvene. I will ask the guests to please take their
seats.
Ladies and gentlemen. Ladies and gentlemen, please take
your seats. The committee will reconvene. I would ask the
guests to please take their seats, and I will introduce the
second panel.
We have 3 witnesses on the second panel, and I will
introduce them in the order in which they will present
testimony.
First, we have Dr. Iris Udasin, Medical Director,
Environmental and Occupational Health Sciences Institute,
Robert Wood Johnson Medical School. Welcome, Dr. Udasin.
Secondly, we have Mr. David Howley, retired police officer, New
York City Police Department. And finally, we have Ms. Barbara
Burnette, a former detective, New York City Police Department.
Thank you very much for your patience, for coming, for your
testimony. Your written testimony will be made a part of the
record. You will each be given 5 minutes to summarize. There
are a series of lights on the table, so you will see green
fist, then yellow. When red appears, we ask that you please
conclude your testimony.
So at this time, Dr. Udasin, you are recognized for 5
minutes to summarize your testimony.
STATEMENTS OF IRIS G. UDASIN, M.D., DIRECTOR, ENVIRONMENTAL AND
OCCUPATIONAL HEALTH SCIENCES INSTITUTE, ROBERT WOOD JOHNSON
MEDICAL SCHOOL; DAVID G. HOWLEY, RETIRED POLICE OFFICER, NEW
YORK CITY POLICE DEPARTMENT; AND BARBARA BURNETTE, FORMER
DETECTIVE, NEW YORK CITY POLICE DEPARTMENT
STATEMENT OF IRIS G. UDASIN
Dr. Udasin. My name is Iris Udasin, and I serve as Director
of Rutgers Clinical Center of Excellence in New Jersey. We are
1 of 6 clinics in the New York/New Jersey area that provide
medical monitoring and treatment for World Trade Center first
responders. I am a physician who is board certified in internal
and occupational medicine, and am a professor at Rutgers, and a
member of the National Toxicology Panel, an expert panel that
advises the National Institute of Environmental Health Sciences
concerning the relationship between exposure to toxic chemicals
and health.
I want to thank the committee for giving me the opportunity
today to testify concerning the importance of our Clinical
Centers of Excellence, and for the opportunity to provide the
best quality medical care through the Zadroga Act to those
brave responders who have suffered from multiple, chronic and
often disabling medical illnesses, including pulmonary
fibrosis, sarcoidosis, asthma, gastric reflux, sinusitis, and
sleep apnea.
We have been monitoring World Trade Center patients in New
Jersey since January 2003, and began treating patients with
Federal funding starting in 2007. In addition to the treatment
of the aforementioned conditions, over the past 3 years we have
been able to use our funding under the Zadroga Act to optimize
cancer care. This is critical, since as early as 2008, our
responders were already showing a cancer rate that was 15
percent higher than people their age, who were not at the
disaster site. This rate is only increasing, and our patients
are much younger than usual cancer patients and are nonsmokers.
They were highly exposed to environmental toxins as well as
severe mental health trauma from what they witnessed at Ground
Zero. From seeing people jumping off tall buildings to their
death, or finding charred remains.
Our designation as a Clinical Center of Excellence has
allowed us to provide quality of care for these responders by
centering all their care in a convenience location with staff
members sensitive to their needs, coordinating treatment from
start to finish. The combination of program-wide knowledge
gained over 12 years of care delivery, in addition to my
personal knowledge in New Jersey, has allowed us to understand
this cohort of patients using medical and pharmaceutical
resources wisely to accomplish the following objectives, which
I will illustrate with specific patient examples. Coordination
of care for complex cases. Diagnosis and treatment of patients
considering both physical and mental health aspects of disease.
Use of state-of-the-art diagnostic techniques for early
diagnosis and treatment. Use of knowledge gained in our
treatment of patients to allow for early intervention, enabling
our skilled patients to stay at work.
I am proud to share this panel with David Howley, a retired
police officer, who performed many months of search and rescue
work at the site. David presented with swelling in his neck in
2006, which was eventually diagnosed as an aggressive
metastatic cancer of the throat. This is an unusual and rare
cancer in healthy, nonsmoking Americans. However, in my center,
we have seen 8 other patients with this cancer in New Jersey
alone. David's treatment has required a team of doctors,
including myself as primary care, the general oncologist, the
radiation oncologist, the general surgeons, the ear, nose, and
throat surgeons. Because of the complicated nature and location
of his cancer, it has been extremely difficult to treat, but at
the present time, he is tumor-free since April of 2014.
The second patient I want to tell you about is a retired
detective, with severe shortness of breath, chest discomfort,
fatigue, and inability to perform his duties as a police
officer, who was present at the 9/11 site on the date of
disaster, reported being engulfed in the dust cloud, and
witnessing people jumping out of buildings. He was treated by
his personal physician, with 5 medications for his respiratory
issues, but no other conditions. His evaluation at our center
confirmed the presence of asthma, but we were also able to
diagnose rhinitis, gastric reflux, sleep apnea, post-traumatic
stress disorder, and panic attacks. This patient was given
treatment for those conditions, and received therapy for PTSD
and panic disorder. The patient was able to recognize that his
panic attacks were causing him to use increased amounts of his
asthma medication, and he learned to control his attacks. At
his most recent examination, he no longer needs mental health
medications, and is enjoying his retirement.
The third patient I want to speak about works as a
consultant to prevent tax fraud. An abnormality was noted on
his chest x ray, and he was referred for a CT scan. A small
nodule was noted in November of 2014, which grew larger in
January. This was evaluated by a radiologist who is an expert
in interpreting lung CT scans. She was concerned about the
suspicious nature of this nodule and its growth since the
original CT scan. This patient was referred to our university
surgeon who removed a stage 1 lung cancer, which does not need
chemotherapy or radiation. And I want to say this patient is
back at work. He is overseas looking for people who have
cheated the Government paying taxes.
And finally, Rutgers University and NYU have combined to do
research, finding markers for sleep apnea associated with
environmental exposure. This expertise has allowed for early
diagnosis and treatment of obstructive sleep apnea, enabling us
to get people to work safely.
My fourth patient is a pilot for a law enforcement agency,
with a history of GERD and sinusitis, which are risk factors
for sleep apnea. Thanks to early diagnosis, this patient has
been successfully treated for his conditions, and he is fully
qualified under Federal standards to skillfully operate his
aircraft. He asked how he could thank me for his treatment, and
I said that he should continue catching terrorists.
In summary, all of our patients are honored and treated by
skilled clinicians. We believe we are continuing to acquire the
knowledge to provide early diagnosis and treatment of emergency
responders who were exposed to toxic agents and psychosocial
stressors. We are striving to continue to achieve excellence
and cost-effectiveness in treating our patients, as well as
preparation for providing the best possible medical care for
any emergency responders who were exposed to a multitude of
unpredictable exposures.
[The prepared statement of Dr. Udasin follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Mr. Pitts. The Chair thanks----
Dr. Udasin. Thanks for the extra time.
Mr. Pitts [continuing]. The gentlelady.
And now recognizes Mr. Howley, 5 minutes for your summary.
STATEMENT OF DAVID G. HOWLEY
Mr. Howley. Thank you, sir. First thing I would like to do
is thank you for having this hearing. It is obviously very
important by the amount of people that are here today, and it
is both an honor and a privilege to be here and address you.
There are a lot of things I would like to say about this,
but I think the most important is to answer a question that you
all basically posed to Dr. Howard, and that is what happens if.
And Dr. Howard was wonderful in his answers, but I think I am
going to be a little more blunt about it. People are going to
die. The men and women that are sick, that are being taken care
of now. I have only been cancer-free a little over a year. I
could easily--and if it wasn't for this lady right here, I
wouldn't be here at all. So to end this program, people are
going to die. It is just--it is a fact. It is unquestionable,
and that is what is going to happen.
I was born and raised in Mr. Pallone's district, and I
lived in his district once I retired, and then I moved a few
years ago, and I live in Congressman Lance's district. So I
have both sides of the aisle covered here. This is not
something that should have any political fighting. This should
be an absolute bipartisan, 435-to-0-type bill. This is a ground
ball and no-brainer, as far as I am concerned.
And as--the other--and the last point I would like to make,
because I am going to try to keep this brief, is, I wouldn't be
here, sitting here, if it wasn't for the doctors and Dr.
Udasin's and her other colleagues' knowledge, skills,
abilities, research. They have become the absolute experts in
what is ailing us, and not just me but all the other people
that are part of this program. You can't go to your regular
doctor. They don't have the knowledge. They just don't. They
are not bad doctors, there is nothing wrong with it, but what
has happened to us because of the conditions that we were in
is--has become very specific. And I didn't have a normal
cancer, and there are a lot of other people who don't have
normal or normal blood diseases, and because of their absolute
dedication, they have come up with plans and outlines and--that
they can treat and get us through these difficult diseases. And
that is the most important thing is that we can have a quality
of life to go forward.
And I am going to leave it at that. I will be happy to
answer any of your questions.
[The prepared statement of Mr. Howley follows:]
[GRAPHICS NOT AVAILABLE IN TIFF FORMAT]
Mr. Pitts. The Chair thanks the gentleman. And now
recognizes Ms. Burnette 5 minutes for your opening statement.
STATEMENT OF BARBARA BURNETTE
Ms. Burnette. Thank you subcommittee--Ranking Member Green,
and members of the subcommittee on Health for inviting me to
appear before you today.
My name is Barbara Burnette, and I live in Bayside, New
York. I am 52 years old, a wife, a mother, and a grandmother.
With me here today are my husband, Lebral, Sr., and my son,
Lebral, Jr. I am a proud former New York City police detective.
I retired from the department after 18 \1/2\ years of service.
My career came to an end because of an illness I developed from
the time I served at the World Trade Center site. I served
there for more than 3 weeks; about 23 days in total. The
morning of September 11, 2001, I was working in Brooklyn, New
York, in the Gang Intelligence Division. When my fellow
officers and I learned that the morning--the terrorist attacks
in New York City, we rushed to lower Manhattan the fastest way
possible, which was by boat. When we arrived, the towers had
collapsed. The air was thick with dust and smoke. I put my
hands over my mouth and noise just to breathe. My fellow
officers and I worked all day and well into the night. We
evacuated people from around the World Trade Center site. We
directed them away from the disaster. There was so much dust,
but I was not given any respirator or any kind of protection
for my eyes, throat, or lungs. I had to wash out the debris of
my eyes and throat, picking up a hose. My fellow officers and
I, along with all the rescue workers and first responders,
could not stop doing what we had to do. The first night I
finally left the World Trade Center around 10:00 p.m., after 12
hours. Five hours later, I reported back to the World Trade
Center site at 4:00 a.m. in the morning on September 12. I
removed debris by using buckets and shovels, and at no time was
I provided with respiratory protection. If I was not crying
over what I was seeing in the room, tears streamed down my face
from burning, irritating dust.
I spent weeks at the World Trade Center site, shoveling,
clearing away debris, searching for survivors, and later
sifting for body parts of the dead. We worked side-by-side and
hand-in-hand with ironworkers, construction workers,
firefighters, police officers, all of us searched in the dust
and removed debris together. We were searching and removing
wreckage of the World Trade Center. We were working right on
top of the burning, smoky, hot rubble. The fires never stopped
burning. Air quality, we were told, was not a concern. All of
us working 24/7.
The work was tough and dirty, we were choking, and it was
dangerous, but there was never a time when I even thought about
quitting or leaving. I thought of thousands of poor victims. If
our work brought the removal and recovery efforts closer to the
end, we were glad to contribute.
I live with the consequences of 9/11 every day. I have been
diagnosed with interstitial lung disease; more specifically,
hypersensitivity pneumonitis with fibrosis in my lungs. The
inflammation in my lungs interferes with my breathing, and
destroys the tissues that get oxygen to my blood. My lungs are
permanently scarred. I cannot move around my home or take the
stairs without wheezing or gasping for breath. I start each
morning connecting to a nebulizer and inhaling multiple doses
of medications. I am told I will eventually need a double lung
transplant. Long steroid use has caused weight gain and other--
and has--and other prescription medications have caused many
additional illnesses. I have been diagnosed with diabetes, high
blood pressure, osteoarthritis, and rheumatoid arthritis. I
have suffered partially detached retinas in both eyes, each
requiring surgery. Prior to my World Trade Center service, I
was in top shape. I had no history of lung disease, I never
smoked, I always had a physically demanding lifestyle and
career. During my time with NYPD, I worked for 5 years in the
Plainclothes Narcotics Unit. These assignments required me to
walk 4 miles per day, making arrests in buy-and-bust
operations, and executing search warrants. I have made over 200
arrests in my career, and have assisted in hundreds more. I
have been recognized by the NYPD numerous times for excellent
police duty. I have also received several medals for
meritorious police duty.
I was born and raised in Brooklyn, New York. I played high
school and college basketball. I played on the police league
women's team which competed across the United States
internationally. Life has become very different since I became
sick. Every month, I see the doctors at Mount Sinai to receive
care and renew my prescriptions. This program saves lives. It
is saving my life today. It provides medical structure in my
life by coordinating doctors and medications. My family does
not have to suffer the financial burden of doctors' visits,
copayments, deductibles, and the terrible cost of prescription
medication, which I--would not be available to me without the
program.
I would also note that the health conditions are worsening.
Many of the first responders' colleagues have been diagnosed
with cancer. Many colleagues have died of cancer. The amount of
dust to which we were exposed was unprecedented. Many of us
fear cancer and other injuries that arise late after toxic
exposure.
Recently, more than 60 types of cancers have been
identified by medical researchers as being directly related to
the toxins found at Ground Zero. Cancer arises years and years
later. For these reasons, I would urge the committee to approve
the bipartisan legislation before it.
Thank you.
[The prepared statement of Ms. Burnette follows:]
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Mr. Pitts. The Chair thanks the gentlelady. And thanks to
all the witnesses for their testimony.
I will begin the questioning by members and recognize
myself 5 minutes for that purpose.
Dr. Udasin, we will begin with you. In your testimony you
talk about the coordination of care that your client provides,
and that you can spend time with your patients. Can you
elaborate in more detail about that?
Dr. Udasin. Since David is sitting next to me, it is a
really good example. David's condition was in such a peculiar
location that we had to find different surgeons that were able
to get to where his cancer were--was. So this required speaking
to people individually to determine who had the right expertise
to actually take care of his cancer. Where he could get the
right radiation, that was a big issue in David's case also
because there were certain issues with how he was receiving
radiation, and he could better go to one place and not go to
another place. And the good news for David was that he had a
supportive family to take care of his other needs, but we have
had other patients not as fortunate as David where,
unfortunately, we have had to coordinate getting them into
things like hospice care. So my staff--and I would like to
acknowledge Tracey Berspese, my administrator, who is sitting
there, who helps us arrange a lot of the important things that
we do with our patients. Getting them from place to place,
making sure they get a good appointment and a prompt
appointment.
So, you know, you go into a doctor's office, and you have
an abnormal test, and then you have to go and see a specialist.
If you go in just by yourself, they say, oh, you can have an
appointment next November. That is their next available
appoint. But I can assure you, when I call up, you will be in
by Tuesday. So if that answers your question.
Mr. Pitts. Yes. Well, just to follow up with the
coordination and having time, very important for the level of
care that you give. Was it possible to provide this level of
care before Congress established the World Trade Center Health
Program?
Dr. Udasin. It was not possible to obtain this degree of
care. Initially we had, in--the end of 2002, 2003, we just had
the monitoring program, and it was very frustrating because you
could find something wrong with a person and we really didn't
have the resources to make sure they got to see the correct
person. And I am grateful for the Zadroga funding that we have
now so that we can do that.
Mr. Pitts. Thank you. For Mr. Howley and Ms. Burnette, can
you talk about your care before and after the creation of the
Centers of Excellence in the Zadroga 9/11 Health and----
Mr. Howley. I----
Mr. Pitts [continuing]. Compensation Act, and in your view
is it better coordinated?
Mr. Howley. I was thinking of a story when you just asked
the doc a question. I am probably one of her original patients
going back to the monitoring program back in 2003. The first
time I went there, my blood pressure was basically somewhere
off her chart. My sinuses were completely blown out. I had
constant infections, I had GERD, which is acid reflux, and she
basically refused to let me leave her office unless I went
straight to my doctor to get treated for the blood pressure.
And I am 6'3'' and she is about 5'1'', and I believed here that
she wasn't going to let me out of the office.
So yes, there is a big difference. As far as--and she is
just wonderful, and I am sure--and I haven't really dealt--I
have only dealt with one other of the doctors at her office,
and I have never been to any other offices, so I can't speak
about any of them. But the doctors at--you know, are just
tremendous, and they--as she was saying, when the cancer has
kept coming back for me, and it has reoccurred 4 times for me.
You can now--she can make those phone calls now, where--and get
me to the right--and when she says Tuesday, she is not kidding
you.
Mr. Pitts. Thank you. Ms. Burnette, would you respond to
that, you know, as a patient in the World Trade Center Health
Program, are you satisfied with your access and the care you
have received, and compare before and after.
Ms. Burnette. Yes, I am very satisfied with my care because
in 2004, I started blacking-out at work and nobody knew why,
and with the regular doctors I was just being sent out for
different kind of tests. In the program, they send me to 1
doctor, who sends me to another doctor to make sure everything
is covered. They schedule everything for you. And I think it is
very important that they follow up in what is going on, and how
they treat us is very well.
Mr. Pitts. thank you. My time has expired.
The Chair recognizes the ranking member, Mr. Green, 5
minutes for questions.
Mr. Green. Thank you, Mr. Chairman.
Mr. Howley, from your testimony I understand you have been
seeing Dr. Udasin since the permanent World Trade Center Health
Program was established under Zadroga. Would you explain what
being able to see Dr. Udasin at the Rutgers Center of
Excellence has meant to you? And I know it sounded like a
little bit from the earlier question.
Mr. Howley. That is fine. How do I phrase this in--their
knowledge that they have acquired, because they have seen so
many of us, when I present the next set of conditions or a
former set of conditions that I had, she can tell me, Dave, go
see Dr. X, Y, and Z, and not Dr. A, B, and C, because of her
knowledge and skill and what she has been able to put together
by seeing so many of us, she has that template, those tools in
her belt----
Mr. Green. Yes.
Mr. Howley [continuing]. That will send me to the right
person.
Mr. Green. Do you think you would have been in worse
condition without being in the center?
Mr. Howley. I wouldn't be here. This chair would be filled
with somebody else. I would not be here. There were only 3--the
last surgery I had last year, there were only I believe it was
4 surgeons that were qualified to do what I needed to get done.
Mr. Green. OK. Ms. Burnette, from your testimony I
understand you receive medical monitoring treatment services at
the Mount Sinai Clinical Center of Excellence. Could you
explain what care you have received at Mount Sinai, and what it
has meant to you?
Ms. Burnette. The care I received has been excellent. They
did an open lung biopsy which determined that I--which lung
disease I had and how they were able to treat it, and what
doctors I needed to see.
Mr. Green. OK. And could you explain what the care you
received at Mount Sinai--I assume it is similar to what Dr.
Udasin, you know, your--they are treating the whole person.
Ms. Burnette. Yes. I have a primary doctor. They send me to
individual doctors for the different diseases I have, like
GERD, asthma, sinusitis, and one primary doctor coordinates all
of that.
Mr. Green. OK. Do you think your condition would be worse
if you hadn't had--didn't have access to the 9/11 Health
Program?
Ms. Burnette. I believe it would be terribly worse because
I was--I had that World Trade Center cough. I was not able to
hold a conversation without the program providing me with the
medications that I needed.
Mr. Green. Dr. Udasin, why does this cohort of patients
need the types of specialized care that is provided at the
Clinical Centers of Excellence?
Dr. Udasin. We have people with rare conditions like David
that need specialists' help. We have been able to use our best
university resources to get people that have seen many
abnormalities on things like CT scans to get patients, like the
gentleman I mentioned, to have the cancer removed. But I think
really, the total--the number of conditions that we see and the
complicated cases that we see, so you might have one condition
and that influences another condition, and makes the third
condition worse. So if you have mental health issues and you
have reflux, and then you get chest pain, and you have asthma,
you end up taking too many medications, and then you get a
side-effect from medications. Many of the asthma medications,
if you take too many of them, can precipitate heart disease. So
I feel like early recognition and treatment of all the
conditions correctly allows for much better outcomes for
people.
Mr. Green. It sounds like, with so many possible illnesses,
misdiagnosis would be--would not be uncommon.
Dr. Udasin. Well, that is correct. And Ms. Burnette
described her shear number of conditions. And, yes, that is the
issue because you don't want to--so you treat one condition
really effectively, but you kill the patient while you are
doing it because she had some other condition that you ignored.
And so that is what I believe we are able to do. As the primary
care gatekeeper-type person, I can make sure that all the
specialists are talking to each other, and making sure that the
total patient is treated correctly.
Mr. Green. Thank you, Mr. Chairman. And I think because of
the complications and the exposure to no telling what, that you
need to have someone who looks at the whole person and actually
treats all of the illnesses that you are subject to.
Thank you, Mr. Chairman.
Mr. Pitts. The Chair thanks the gentleman.
Now recognize the gentleman from New Jersey, Mr. Lance, 5
minutes for questions.
Mr. Lance. Thank you, Mr. Chairman.
Dr. Udasin, can you explain in a little more detail your
Center of Excellence and what that means, and how many there
are in the metropolitan region, and what qualifies your
organization as being a Center of Excellence?
Dr. Udasin. Well, thank you. We are part of the Non-FDNY
Responder Program, and so FDNY has a separate center. We are
one of the New York/New Jersey consortium, which includes
centers at Mount Sinai, NYU, Stony Brook, Queens College, and
Rutgers.
Mr. Lance. Mount Sinai and NYU would be in Manhattan, and--
--
Dr. Udasin. Yes.
Mr. Lance [continuing]. Stony Brook is on Long Island,
and----
Dr. Udasin. And----
Mr. Lance [continuing]. Queens is obviously in Queens, and
Rutgers----
Dr. Udasin. Queens is sort of in Nassau also. It is kind of
on the border over there. And we serve as a Center of
Excellence in New Jersey. What makes us different, our
physicians are board certified in primary care specialties,
internal medicine, and occupational medicine. It is double
board certified. Almost all of our physicians have at least 2
board certifications. As I said, Rutgers has an Environmental
Center of Excellence in our same building, and we do extensive
work on exposure and health effects, and that happens beside--
that is the rest of the faculty that I work with in Rutgers. So
we have a lot of experience with exposure and illness.
We have a pulmonary doctor that actually comes into our
practice and sees patients with us. We have mental health
people that come into our practice and see patients. And then
across the street from us we have our surgeons, our
gastroenterologists and a number of other specialties--
specialists that we need in the Rutgers Center.
By the way, we changed our name to Rutgers. We need to get
that on the record that we changed from UMDNJ to Rutgers. In
any event----
Mr. Lance. That is because our State legislature has
permitted the combination of the University of Medicine and
Dentistry and Rutgers.
Dr. Udasin. Right. So in any event, then I have my
registered nurses who are there helping us take care of
patients, making sure that histories are obtained correctly,
making sure that people actually know how to use their
medications. This is really very important that we have people
making sure that not only medications are used, but they are
used correctly. Then I have, as mentioned, my mental health
corps, then I have my administrative corps which Tracey
Berspese heads, and that group of people is performing audits
to make sure that everybody else is doing everything correctly.
We are using our pharmacy correctly. We are doing the best that
we can to keep costs down, using generic drugs, and that all of
our providers and people that are writing prescriptions, that
everybody is certified appropriate to do this, and that our
patients actually get their medications when they get to the
pharmacy. So that is part of coordination of care. And I can
assure you we are performing these audits because I want to
make sure that we have funding to treat our patients.
Presumably you guys are going to unanimously confirm this bill,
and I want the money to be there to treat our patients.
Mr. Lance. Thank you very much, Doctor.
And to Mr. Howley and Ms. Burnette, thank you for your
superb public service, and certainly, we honor that public
service.
Ms. Burnette, what position did you play in basketball when
you played basketball?
Ms. Burnette. Point guard.
Mr. Lance. Point guard. I was 5'8'' so I never played
basketball.
Mr. Chairman, I have a letter from, I think, 38 members of
the New York and New Jersey Delegation to Speaker Boehner and
Leader Pelosi requesting early passage of this bill. I would
request that it be submitted for the record.
Mr. Pitts. The gentleman seeks unanimous consent----
Mr. Lance. I seek----
Mr. Pitts [continuing]. To put in the record.
Without objection, so ordered.
[The information appears at the conclusion of the hearing.]
Mr. Lance. Thank you, and I yield back 7 seconds.
Mr. Pitts. The Chair thanks the gentleman.
Now recognizes the ranking member of the full committee,
Mr. Pallone, 5 minutes for questions.
Mr. Pallone. Thank you, Mr. Chairman.
Dr. Udasin, I wanted to get into the--try to have you
explain, if you will, the importance of not only the Rutgers
Center but all of the centers that are part of this World Trade
Program in terms of research, because there is an extensive
research component, and I want you to kind of emphasize if you
can how you are developing diagnosis and treatment of disorders
that, you know, people might not even be aware of, and how that
research and, you know, the uniqueness of the center makes that
possible. Could--so could you just kind of describe how the
Rutgers Center is involved in research into World Trade Center-
related conditions, and how that research is improving our
ability to diagnose and treat WTC-related health conditions,
and the benefits of that research?
Dr. Udasin. So answering the Rutgers only----
Mr. Pallone. That is fine, sure.
Dr. Udasin [continuing]. Rutgers and NYU research is, we
have a lot of sleep apnea experts in those 2 centers, and what
I am really proud to say is that between our laboratory
toxicologists and our sleep experts, we have developed certain
markers that we are seeing in certain of our patients. Dr.
Sundaram, one of our sleep experts, presented this at the
recent American Thoracic Society meetings, that certain markers
were developed that certain people can be predicted possibly to
have sleep apnea. And this is really important because these
are inflammatory markers, and these people at 9/11 site were
exposed to all kinds of toxins that can cause inflammation. And
so because of that association between environmental exposures
and inflammation, we have been able to find people a lot
sooner, get them treated. And for people to think about sleep
apnea and the environment, because traditionally sleep apnea
was thought of something that you had to be enormously obese to
get, and we have patients that are not quite playing point
guard, but are in awfully good shape that have sleep apnea. And
we are able to--as I said, we--because of our occupational
expertise, sleep apnea is a very serious condition. There was
somebody who died recently, a celebrity, on the New Jersey
Turnpike because a bus driver fell asleep. And we have a lot of
our patients who have to drive commercial vehicles, operate
planes, operate the subway, operate all kinds of heavy
equipment, and it is really good that we are able to treat them
and keep them safe and awake. And I feel like that is one thing
our research has accomplished, which is not only applicable to
our patients, but it is applicable to other people with
environmental exposures.
Mr. Pallone. I appreciate that. The other thing I wanted
to--if you could get across is how we can expect an increase
among the population that--of these 9/11-related conditions. In
other words, my understanding is as time goes on, we find more
cancers, more disorders, you know, as people get older, that
maybe didn't exist before and that have to be--and that now we
are finding through your research or others in these centers
that are related to 9/11 that we didn't know about before.
Dr. Udasin. So I want to say that certain kinds of
malignancies--poietic malignancies, have very short latency
periods, and you would expect to see something like that within
just a couple of years after exposure to toxins, but other
toxins like asbestos have much longer latency periods, and they
might be seen later on and at a different time.
And if I could use just a few minutes to also answer a
question that you asked Dr. Howard earlier about mistakes made
by providers outside of the program. If I could just add that
we have found in the program that people have been undertreated
by local providers for various cancers, for various severe lung
conditions like pulmonary fibrosis, and I do want to say, even
though that wasn't exactly the question you asked, I do want to
say that we have been able to improve the health care by tuning
up, by getting better diagnostic services to our patients than
they were able to get from some of the local people.
Mr. Pallone. Thank you very much.
Thank you, Mr. Chairman.
Mr. Pitts. The Chair thanks the gentleman.
That concludes the questions of the members. They will have
follow-up questions in writing. We will submit those to you,
ask that you please respond promptly.
I would remind members they have 10 business days to submit
questions for the record. And they should submit their
questions by the close of business on Thursday, June 25.
Thank you very much for sharing your personal experience,
for your excellent testimony. The committee will take up this
legislation, I assure you, and act on it. And you have
performed a public service by being here today. Thank you very
much.
And without objection, the subcommittee is adjourned.
[Whereupon, at 12:41 p.m., the subcommittee was adjourned.]
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