September 11: Monitoring of World Trade Center Health Effects Has
Progressed, but Not for Federal Responders (10-SEP-05,		 
GAO-05-1020T).							 
                                                                 
After the 2001 attack on the World Trade Center (WTC), nearly	 
3,000 people died and an estimated 250,000 to 400,000 people who 
lived, worked, or attended school in the vicinity were affected. 
An estimated 40,000 people who responded to the 		 
disaster--including New York City Fire Department (FDNY)	 
personnel and other government and private-sector workers and	 
volunteers--were exposed to numerous physical and mental health  
hazards. Concerns remain about the long-term health effects of	 
the attack and about the nation's capacity to plan for and	 
respond to both short- and long-term health effects in the event 
of a future attack or other disaster. Several federally funded	 
programs have monitored the physical and mental health effects of
the WTC attack. These monitoring programs include one-time	 
screening programs and programs that also conduct follow-up	 
monitoring. GAO was asked to assess the progress of these	 
programs. GAO examined (1) federally funded programs implemented 
by state and local government agencies or private institutions,  
(2) federally administered programs to monitor the health of	 
federal workers who responded to the disaster in an official	 
capacity, and (3) lessons learned from WTC monitoring programs.  
GAO reviewed program documents and interviewed federal, state,	 
and local officials and others involved in WTC monitoring	 
programs.							 
-------------------------Indexing Terms------------------------- 
REPORTNUM:   GAO-05-1020T					        
    ACCNO:   A36360						        
  TITLE:     September 11: Monitoring of World Trade Center Health    
Effects Has Progressed, but Not for Federal Responders		 
     DATE:   09/10/2005 
  SUBJECT:   Emergency medical services 			 
	     First responders					 
	     Health care programs				 
	     Health hazards					 
	     Health research programs				 
	     Locally administered programs			 
	     Medical examinations				 
	     Monitoring 					 
	     State-administered programs			 
	     Performance measures				 
	     FDNY WTC Medical Monitoring Program		 
	     HHS WTC Federal Responder Screening		 
	     Program						 
                                                                 
	     New York State Responder Screening 		 
	     Program						 
                                                                 
	     World Trade Center (NY)				 
	     WTC Health Registry				 
	     WTC Medical Monitoring Program			 

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GAO-05-1020T

     

     * Background
     * Health Monitoring Programs Implemented by State and Local Go
     * Three WTC Monitoring Programs Provided Medical Examinations
     * Programs Provide Data for WTC-Related Health Research
     * Program Officials Are Concerned That Current Federal Funding
          * HHS's Program for Screening Federal Responders Has Accomplis
     * HHS Program Screened Few Federal Workers and Has Been on Hol
     * Two Federal Agencies Established Their Own Screening Program
          * Lessons from WTC Health Monitoring Programs Could Assist Fut
          * Concluding Observations
          * Contact and Acknowledgments
     * Appendix I: Abbreviations
     * Appendix II: Government Agencies That Sent Responders Follow
          * Federal Agencies
          * New York State Agencies
          * New York City Agencies
     * Order by Mail or Phone

Testimony

Before the Subcommittee on National Security, Emerging Threats, and
International Relations, Committee on Government Reform, House of
Representatives

United States Government Accountability Office

GAO

For Release on Delivery Expected at 9:00 a.m. EDT in New York, New York

Saturday, September 10, 2005

SEPTEMBER 11

Monitoring of World Trade Center Health Effects Has Progressed, but Not
for Federal Responders

Statement of Cynthia A. Bascetta

Director, Health Care

GAO-05-1020T

Mr. Chairman and Members of the Subcommittee:

Thank you for inviting me to participate in today's hearing to discuss
issues related to the health effects that people continue to experience in
the aftermath of the September 11, 2001, terrorist attack on the World
Trade Center (WTC).1 After the collapse of the WTC buildings, nearly 3,000
people died, and an estimated 250,000 to 400,000 people who lived, worked,
or attended school in the vicinity were affected. An estimated 40,000
people responded to the disaster, including New York City Fire Department
(FDNY) personnel and other government and private-sector workers and
volunteers from New York and other locations across the nation. These
responders,2 as they took part in various rescue, recovery, and cleanup
activities in the days, weeks, and months following the attack, were
exposed to numerous physical hazards and environmental toxins due to the
destruction caused by the attack. The magnitude and unprecedented nature
of this event also exposed responders and many other people to
considerable psychological trauma.

Four years after the destruction of the WTC buildings, concerns remain
about the long-term physical and mental health effects of the attack.
Several recent studies of responders report that many of them have high
rates of physical and mental health symptoms, of which respiratory
problems are the most persistent physical effects.3 While the nature and
severity of a future terrorist attack cannot be predicted, our prior work
on the health effects of the WTC attack, the 2001 anthrax attacks, and
bioterrorism preparedness, as well as reports by other organizations,
highlight the importance of ensuring the nation's capacity to plan for and
respond to the short- and long-term health consequences likely to result
in the event of a future attack or other disaster, such as the destruction
recently caused by Hurricane Katrina.4

1A list of abbreviations used in this testimony is in app. I.

2In this testimony, the term "responders" refers to anyone involved in
rescue, recovery, or cleanup activities at or near the vicinity of the WTC
site and Staten Island Fresh Kills landfill (the off-site location of the
WTC recovery operation).

3See, for example, Centers for Disease Control and Prevention, "Mental
Health Status of World Trade Center Rescue and Recovery Workers and
Volunteers-New York City, July 2002-August 2004," Morbidity and Mortality
Weekly Report, vol. 53 (2004); Centers for Disease Control and Prevention,
"Physical Health Status of World Trade Center Rescue and Recovery Workers
and Volunteers-New York City, July 2002-August 2004," Morbidity and
Mortaly Weekly Report, vol. 53 (2004); and Gisela I. Banauch and others,
"Bronchial Hyperreactivity and Other Inhalation Lung Injuries in
Rescue/Recovery Workers after the World Trade Center Collapse," Crical
Care Medicine, vol. 33, no. 1 (2005).

As we testified in September 2004, in the aftermath of the WTC attack,
five key federally funded programs were implemented to assess the
short-term, and in some cases long-term, effects on people's physical and
mental health. These programs include the FDNY WTC Medical Monitoring
Program, WTC Medical Monitoring Program (worker and volunteer program),5
New York State responder screening program, WTC Health Registry, and the
Department of Health and Human Services' (HHS) WTC Federal Responder
Screening Program. You asked us to provide information on the progress of
these monitoring programs.6 My testimony today will focus on (1) progress
made by federally funded programs that are implemented by state and local
government agencies or private organizations and were established to
monitor the health of people in the aftermath of the attack, (2) progress
made by federally administered programs established to monitor the health
of federal workers who responded to the disaster in an official capacity,
and (3) lessons from WTC monitoring programs that could assist those who
may be responsible for future disaster-related health monitoring efforts.

To conduct this work, we obtained and reviewed program documents dating
from the beginning of the programs, including grantee progress reports,
budget documents, clinical protocols, health screening and other
assessment tools, and selected peer-reviewed articles based on information
collected by WTC monitoring programs. We also interviewed federal, state,
and local officials and others involved in administering WTC monitoring
programs, including officials from HHS and the Department of Homeland
Security (DHS); 7 New York State Department of Health; New York City
Department of Health and Mental Hygiene; and FDNY. Within HHS, we
interviewed officials from the Agency for Toxic Substances and Disease
Registry (ATSDR); the Centers for Disease Control and Prevention's (CDC)
National Center for Environmental Health and National Institute for
Occupational Safety and Health (NIOSH); Federal Occupational Health
Services (FOH);8 and the Office of Public Health Emergency Preparedness
(OPHEP). We also obtained information from the Department of Defense (DOD)
and the Department of Justice (DOJ). We interviewed medical professionals
affiliated with the New York University School of Medicine, FDNY's Bureau
of Health Services, Long Island Occupational and Environmental Health
Center, Mount Sinai-Irving J. Selikoff Center for Occupational and
Environmental Medicine, Mount Sinai School of Medicine Department of
Psychiatry, and the University of Medicine and Dentistry of New Jersey's
Robert Wood Johnson Medical School. We relied on data provided by agency
officials and contained in government publications and did not
independently verify the data we obtained. In our judgment the reliability
of the information we obtained was adequate for our purposes. HHS and New
York State officials provided comments on the facts contained in this
statement, and we made changes as appropriate. We conducted our work from
July 2005 through September 2005 in accordance with generally accepted
government auditing standards.

4See, for example, GAO, September 11: Health Effecs in the Aftermath of
the World TradeCenter Attack, GAO-04-1068T (Washington, D.C.: Sept. 8,
2004); GAO, Bioerrorism: PubcHealth Response to Anthrax Incdents of 2001,
GAO-04-152 (Washington, D.C.: Oct. 15, 2003); GAO, Public Health
Preparedness: Response Capacty Improving, but Much Remainsto Be
Accomplished, GAO-04-458T (Washington, D.C.: Feb. 12, 2004); and Institute
of Medicine, Preparng for the Psychological Consequencesof Terrorsm: A
Publc HealhStrategy (Washington, D.C.: 2003).

5This program was formerly known as the WTC Worker and Volunteer Medical
Screening Program. In this testimony, we refer to the program as the
worker and volunteer program.

6In this testimony, we use the term monitoring program to refer to both
one-time screening programs and programs that include initial screening
and periodic follow-up monitoring.

In summary, three federally funded programs implemented by state and local
governments or private organizations in the aftermath of the WTC attack
have provided initial medical examinations-and in some cases follow-up
examinations-to thousands of affected responders to screen for health
problems. For example, the FDNY program completed initial screening for
over 15,000 firefighters and emergency medical service personnel, and the
worker and volunteer program has screened over 14,000 other responders.
The New York State program screened about 1,700 state responders before
ending its screening examinations; in general, it has not informed state
responders that they are now eligible to receive continued monitoring from
the worker and volunteer program. These three programs and the WTC Health
Registry have collected information that monitoring program officials
believe could be used by researchers to help better understand the health
consequences of the attack and improve treatment, such as by identifying
which types of treatment are effective for specific conditions. Officials
of programs that plan to conduct long-term health monitoring are concerned
that current federal funding arrangements may be too short to allow for
identification of all the health effects that participants may eventually
experience.

7The DHS officials we spoke with were from the Federal Emergency
Management Agency, which became part of DHS in March 2003.

8FOH is a part of HHS's Program Support Center.

In contrast to the progress made by federally funded programs implemented
by state and local governments or private organizations, the program that
HHS implemented to screen federal workers who were sent by their agencies
to respond to the WTC disaster has accomplished little. The program-which
started later than other WTC monitoring programs-completed screening of
394 of the estimated 10,000 federal workers who responded in an official
capacity to the disaster and were not eligible for any other WTC health
monitoring program. HHS placed the program on hold in January 2004, when
it stopped scheduling new examinations. It has not screened anyone since
March 2004. We identified two federal agencies that, in the aftermath of
the WTC attack, have implemented programs to assess the health of their
own employees who responded to the disaster.

Officials involved in WTC health monitoring programs cited lessons from
their experiences that could help others who may be responsible for
designing and implementing disaster-related health monitoring efforts in
the future. These include the need to quickly identify and contact people
affected by a disaster; to monitor for mental health effects, as well as
the more obvious physical injuries and illnesses; and, when developing
health monitoring efforts in the wake of disasters, to anticipate that
there will likely be many people who require referrals for further
diagnostic and treatment services and that handling the referral process
may require a substantial level of effort.

                                   Background

When the WTC buildings collapsed on September 11, 2001, an estimated
250,000 to 400,000 people were immediately exposed to a noxious mixture of
dust, debris, smoke, and potentially toxic contaminants in the air and on
the ground, such as pulverized concrete, fibrous glass, particulate
matter, and asbestos. Those affected included people residing, working, or
attending school in the vicinity of the WTC and thousands of emergency
response workers. Also affected were the estimated 40,000 responders who
were involved in some capacity in the days, weeks, and months that
followed, including personnel from many government agencies and private
organizations as well as other workers and volunteers.9

A wide variety of physical and mental health effects have been observed
and reported among people who were involved in rescue, recovery, and
cleanup operations and among those who lived and worked in the vicinity of
the WTC.10 Physical health effects included injuries and respiratory
conditions, such as sinusitis, asthma, and a new syndrome called WTC
cough, which consists of persistent coughing accompanied by severe
respiratory symptoms. Almost all firefighters who responded to the attack
experienced respiratory effects, including WTC cough, and hundreds had to
end their firefighting careers due to WTC-related respiratory illnesses.
The most commonly reported mental health effects among responders and
others were symptoms associated with posttraumatic stress disorder-an
often debilitating disorder that can develop after a person experiences or
witnesses a traumatic event, and which may not develop for months or years
after the event. Behavioral effects such as alcohol and tobacco use and
difficulty coping with daily responsibilities were also reported.

Several federally funded programs monitor the health of people who were
exposed to the WTC attack and its aftermath. The monitoring programs vary
in such aspects as eligibility requirements, methods used for collecting
information about people's health, and approaches for offering referrals.
Of the four programs that offer medical examinations to WTC responders,
the only one that is open to federal workers who responded to the disaster
in an official capacity is the one implemented by HHS. (See table 1.) None
of the monitoring programs receives federal funds to provide clinical
treatment for health problems that are identified.

9The responders included firefighters, law enforcement officers, emergency
medical technicians and paramedics, morticians, health care professionals,
and other workers and volunteers, including those in the construction and
ironwork trades, heavy equipment operators, mechanics, engineers, truck
drivers, carpenters, day laborers, and telecommunications workers.
Numerous federal, state, and New York City agencies sent personnel to
respond to the WTC disaster (see app. II).

10 GAO-04-1068T .

Table 1: Key Federally Funded WTC Health Monitoring Programs

           Implementing  Federal                                                  
           agency or     administering Eligible      Monitoring      Treatment    
           organization  agency        populations   methods         referral
                         National      Firefighters  Medical         Refers to    
                         Institute for and emergency questionnaire   FDNY-BHS     
FDNY WTC   FDNY Bureau   Occupational  medical       and examination 
Medical    of Health     Safety and    service                       
Monitoring Services      Health        technicians                   
Programa   (FDNY-BHS)    (NIOSH)                                     
WTC        Five clinical NIOSH         Rescue and    Medical         Refers to    
Medical    centers, one                recovery      questionnaire   privately    
Monitoring of which, the               workers and   and examination funded       
Program    Mount                       volunteers,                   programs     
(worker    Sinai-Irving                except for                    available to 
and        J. Selikoff                 federal                       responders;  
volunteer  Center for                  workers who                   some         
program)a  Occupational                were official                 privately    
           and                         responders                    funded       
           Environmental               and New York                  treatment    
           Medicine,                   City (NYC)                    provided at  
           also serves                 firefightersc                 the clinical 
           as a data and                                             centers      
           coordination                                              
           centerb                                                   
New York   New York      National      New York      Medical         Instructed   
State      State         Center for    State         questionnaire   participants 
responder  Department of Environmental employees and and examination to see their 
screening  Health        Health        National                      primary care 
programd                               Guard                         physician or 
                                       personnel who                 a specialist 
                                       responded to                  
                                       the WTC                       
                                       attack in an                  
                                       official                      
                                       capacity                      
WTC Health NYC           Agency for    Responders    Telephone-based Provides     
Registry   Department of Toxic         and people    health and      information  
           Health and    Substances    living or     exposure        on where     
           Mental        and Disease   attending     interview       treatment    
           Hygiene       Registry      school in the                 can be       
                         (ATSDR)       area of the                   sought;f     
                                       WTC, or                       refers       
                                       working or                    participants 
                                       present in                    to LIFENETg  
                                       the vicinity                  for mental   
                                       on September                  health       
                                       11, 2001e                     services     
WTC        Department of HHS           Federal       Medical         Instructs    
Federal    Health and                  workers who   questionnaire   participants 
Responder  Human                       responded to  and examination to see their 
Screening  Services'                   the WTC                       primary care 
Program    (HHS) Office                attack in an                  physician;   
           of Public                   official                      in future,   
           Health                      capacity                      may refer    
           Emergency                                                 participants 
           Preparedness                                              with mental  
                                                                     health       
                                                                     symptoms to  
                                                                     a Federal    
                                                                     Occupational 
                                                                     Health       
                                                                     Services     
                                                                     employee     
                                                                     assistance   
                                                                     program      

Source: GAO analysis of information from ATSDR, FDNY, Mount Sinai,
National Center for Environmental Health, New York City Department of
Health and Mental Hygiene, New York State Department of Health, and NIOSH.

aThe FDNY WTC Medical Monitoring Program and the WTC Medical Monitoring
Program constitute the WTC Responder Health Consortium. NIOSH established
the consortium in March 2004 to coordinate the health monitoring of the
two programs and to facilitate data sharing.

bThe other clinical centers are located at the Long Island Occupational
and Environmental Health Center, the New York University School of
Medicine, the City University of New York's Queens College, and the
University of Medicine and Dentistry of New Jersey's Robert Wood Johnson
Medical School. The responsibilities of the Mount Sinai data and
coordination center include coordination of the clinical centers, outreach
and education, quality assurance, and data management.

cThe worker and volunteer program excludes responders who were paid as
federal workers or as NYC firefighters for their WTC work; these employees
are eligible for other programs. The program initially excluded responders
who were paid as New York State employees for their WTC work and were
eligible for the New York State responder screening program. That program
ended its screening examinations in November 2003, and as of February
2005, New York State responders became eligible for the worker and
volunteer program.

dThe New York State program ended its screening examinations in November
2003.

eParticipants in the other WTC monitoring programs may also participate in
the registry program.

fThe registry program provides enrollees with a resource guide of
occupational, respiratory, environmental, and mental health facilities
where they could seek treatment. Some of the services provided by these
facilities require payment, while others are free of charge.

gLIFENET is a 24-hour mental health information and referral service
provided by the New York State Office of Mental Health. In cases where WTC
Health Registry interviewers think a person is experiencing moderate
distress, they can immediately transfer the call so the person can speak
to a LIFENET counselor.

The majority of federal funding for these monitoring programs was provided
by DHS's Federal Emergency Management Agency (FEMA),11 as part of the
approximately $8.8 billion in federal assistance that the Congress
appropriated to FEMA for response and recovery activities after the WTC
disaster.12 One fiscal year 2003 appropriation specifically authorized
FEMA to use a portion of its WTC-related funding for screening and
long-term monitoring of emergency services and rescue and recovery
personnel.13 Generally, however, FEMA may fund only short-term care after
a disaster, such as emergency medical services, and not ongoing clinical
treatment.14

11FEMA is the agency responsible for coordinating federal disaster
response efforts under the National Response Plan.

12FEMA provided funds to HHS to support screening and long-term monitoring
efforts from funds appropriated for disaster relief and emergency response
to the September 11, 2001, terrorist attacks. See Consolidated
Appropriations Resolution, 2003, Pub. L. No. 108-7, 117 Stat. 11, 517;
2002 Supplemental Appropriations Act for Further Recovery from and
Response to Terrorist Attacks on the United States, Pub. L. No. 107-206,
116 Stat. 820, 894; Department of Defense and Emergency Supplemental
Appropriations for Recovery from and Response to Terrorist Attacks on the
United States Act, 2002, Pub. L. No. 107-117, 115 Stat. 2230, 2338; and
2001 Emergency Supplemental Appropriations Act for Recovery from and
Response to Terrorist Attacks on the United States, Pub. L. No. 107-38,
115 Stat. 220-221.

13Pub. L. No. 108-7.

FEMA entered into interagency agreements with HHS to fund most of these
health monitoring programs. HHS is the designated lead agency for the
public health and medical support function under the National Response
Plan and is responsible for coordinating the medical resources of all
federal departments and agencies. HHS's Office of Public Health Emergency
Preparedness (OPHEP) coordinates and directs HHS's emergency preparedness
and response program.

Health Monitoring Programs Implemented by State and Local Governments or Private
                        Organizations Have Made Progress

Three federally funded programs implemented by state and local governments
or private organizations-the FDNY WTC Medical Monitoring Program, WTC
Medical Monitoring Program (worker and volunteer program), and New York
State responder screening program-have made progress in monitoring the
physical and mental health of people affected by the WTC attack. Federal
employees who responded to the WTC disaster in an official capacity were
not eligible for these programs because it was expected that another
program would be developed for them. The New York State program stopped
providing examinations in November 2003, and state workers are now
eligible for initial or continued monitoring through the worker and
volunteer program. In general, the state program has not informed state
responders that they are eligible for the worker and volunteer program.
All three programs and the WTC Health Registry have collected information
that could contribute to better understanding of the health consequences
of the attack and improve health care for affected individuals. Officials
from the FDNY, worker and volunteer, and WTC Health Registry programs are
concerned that federal funding for their programs could end before
sufficient monitoring occurs to identify all long-term health problems
related to the WTC disaster.

14The Robert T. Stafford Disaster Relief and Emergency Assistance Act, as
amended, authorizes FEMA to, among other things, make appropriated funds
available for disaster relief and emergency assistance. Pub. L. No.
93-288, 88 Stat. 143 (1974), as amended. The Stafford Act does not
specifically authorize ongoing clinical treatment.

Three WTC Monitoring Programs Provided Medical Examinations to Identify
Responders' Health Problems

Three federally funded programs implemented by state and local governments
or private organizations have provided medical examinations to identify
physical and mental health problems after the WTC attack. (See table 2.)
Two of these programs-the FDNY WTC Medical Monitoring Program and the
worker and volunteer program-are tracking the health of WTC rescue,
recovery, and cleanup workers and volunteers over time. The third program,
the New York State responder screening program, offered one-time screening
examinations to state employees, including National Guard personnel, who
participated in WTC rescue, recovery, and cleanup work. Federal employees
who responded to the WTC disaster in an official capacity were not
eligible for any of these programs because it was expected that another
program would be developed for them.

Table 2: Monitoring Activities and Associated Federal Funding for WTC
Monitoring Programs Implemented by State and Local Governments or Private
Organizations

                  Completed monitoring    Planned monitoring  Federal         
                  activities              activities          fundinga        
FDNY WTC       Through June 2005,      By June 2009,       $4.8 million    
Medical        15,284 firefighters and conduct three       was provided    
Monitoring     emergency medical       follow-up           beginning in    
Program        service technicians     examinations of     October 2001    
                  received screening      each participant.   for initial     
                  examinations, and 522                       program;        
                  of these participants                       additional $25  
                  completed a follow-up                       million is      
                  examination.                                available       
                                                              through June    
                                                              2009.           
WTC Medical    Through June 2005,      By July 2009,       $15.9 million   
Monitoring     14,110 people received  conduct three       was provided    
Program        screening examinations, follow-up           for initial     
(worker and    and 1,699 of these      examinations of     program;b       
volunteer      participants completed  each participant.   additional $56  
program)       a follow-up                                 million is      
                  examination.                                available       
                                                              through July    
                                                              2009.           
New York State As of November 2003,    No further          $2.4 million    
responder      1,677 of approximately  examinations are    was provided in 
screening      9,800 eligible          planned.            January 2002    
program        employees and National  Participants are    and is          
                  Guard personnel         now eligible to     available       
                  received screening      participate in the  through January 
                  examinations.           worker and          2006.c          
                                          volunteer program.  
WTC Health     As of November 2004,    In 2006, conduct    $20 million was 
Registry       the program completed   follow-up survey of provided        
                  baseline data           participants.       beginning in    
                  collection through                          July 2002,e and 
                  interviews with the     Registry officials  additional      
                  71,437 people who       are developing      funding of      
                  enrolled in the         plans to track      about $3        
                  registry;d registry     participants'       million has     
                  officials estimate that health through      since been      
                  about 385,000 people    2023.               provided.f      
                  had been eligible to                        
                  enroll. In 2005, the                        
                  program updated contact                     
                  information obtained at                     
                  the time of enrollment.                     

Source: GAO analysis of information from ATSDR, FDNY, Mount Sinai,
National Center for Environmental Health, New York City Department of
Health and Mental Hygiene, New York State Department of Health, and NIOSH.

aExcept as noted, FEMA provided these funds to the federal administering
agency for each monitoring program.

b$11.8 million of this amount was provided beginning in July 2002 through
funds appropriated to CDC. An additional $4.1 million was provided in
fiscal year 2003 through an interagency agreement with FEMA.

cThe primary program activity since November 2003 has been data analysis.

dRegistry officials told us that final enrollment numbers may be revised
pending internal verification of data.

eThe grant agreement is between ATSDR and the New York City Department of
Health and Mental Hygiene. However, ATSDR contracted directly with
Research Triangle Institute (RTI), a private not-for-profit organization,
for most of the work to establish the registry, and about $16 million of
the $20 million went directly from ATSDR to RTI.

fThe Environmental Protection Agency provided $2 million of these funds.
In addition, CDC and ATSDR provided $500,000 each.

The FDNY program completed initial screening for over 15,000 firefighters
and emergency medical service personnel, and the worker and volunteer
program completed initial screening for over 14,000 other responders. In
both programs, screenings include physical examinations, pulmonary
function tests, blood and urine analysis, a chest X-ray, and
questionnaires on exposures and mental health issues. Both programs have
begun to conduct follow-up examinations of participants and continue to
accept new enrollees who desire initial screening. Current plans are to
conduct a total of three follow-up examinations for each participant by
2009. As part of their federally funded activities, both programs provide
referrals for participants who require treatment. FDNY employees and
retirees can obtain treatment and counseling services from the FDNY Bureau
of Health Services and the FDNY Counseling Services Unit, or they can use
their health insurance to obtain treatment and counseling services
elsewhere. The worker and volunteer program also provides referrals for
its participants, including referrals to programs funded by the American
Red Cross and other nonprofit organizations.

The New York State program screened about 1,700 of the estimated 9,800
state workers and National Guard personnel who responded to the WTC
disaster. Officials sent letters to these responders to inform them about
the program and their eligibility for it.15 For each participant, the
screening included a health and exposure questionnaire and physical and
pulmonary examinations. Participants who required further evaluation or
treatment after screening were told to follow up with their personal
physician or a specialist. The program stopped screening participants in
November 2003, in part because the number of responders requesting
examinations was dwindling, and no follow-up examinations are planned.

15When state officials contacted the estimated 9,800 state responders,
some of them informed the program that they were not interested in
participating. Officials sent follow-up letters to state employees who did
not respond to the initial mailing. National Guard personnel were sent
only an initial letter.

In February 2005, worker and volunteer program officials began to allow
New York State responders to participate in that monitoring program. The
officials determined that the worker and volunteer program would have
sufficient funding to accommodate state workers who want to join the
program.16 The state program has not notified the approximately 1,700
workers it has screened that they are now eligible for continued
monitoring from the worker and volunteer program. Program officials
relayed this development only to those state responders who inquired about
screening or monitoring examinations following the decision to permit
state responders to participate in the worker and volunteer program.
Worker and volunteer program officials told us that, through August 2005,
no state workers who responded to the WTC disaster in an official capacity
had received examinations from the worker and volunteer program. According
to worker and volunteer program officials, any state worker screened by
the state program would need a new baseline examination through the worker
and volunteer program because the screening data collected by the state
program differ from the data collected in the worker and volunteer
program. For example, the worker and volunteer program offers a breathing
test not provided by the state program.

Programs Provide Data for WTC-Related Health Research

In addition to providing medical examinations, these three programs-the
FDNY program, the worker and volunteer program, and the New York State
program-have collected information for use in scientific research to
better understand the health consequences of the WTC attack and other
disasters. A fourth program, the WTC Health Registry, includes health and
exposure information obtained through interviews with participants; it is
designed to track participants' health for 20 years and to provide data on
the long-term health consequences of the disaster (see table 2).
Physicians who evaluate and treat WTC responders told us they expect that
research on health effects from the disaster will not only help
researchers understand the health consequences, but also provide
information on appropriate treatment options for affected individuals.

16As of September 1, 2005, the worker and volunteer program was in the
process of establishing a network of providers to serve responders outside
the New York City metropolitan area. State responders had been eligible
for monitoring at existing New York City area clinics since February 2005,
but they will not be able to visit providers in Albany and other areas of
New York until the network is established.

Both the FDNY program and the worker and volunteer program have been the
basis for published research articles on the health of WTC responders. For
example, the FDNY program reported on the injuries and illnesses
experienced by firefighters and emergency medical service workers after
responding to the attack.17 In addition, the worker and volunteer program
published information on the physical and mental health of responders in
2004.18 Officials from both programs plan to publish additional findings
as they track participants' health over time. Although the New York State
program has stopped offering examinations, program officials are
continuing to analyze data from the program with plans for eventual
publication.

The WTC Health Registry program has collected health information through
interviews with responders, people living or attending school in the
vicinity of the WTC site, and people working or present in the vicinity on
September 11, 2001. The registry completed enrollment and conducted
interviews with over 71,000 participants by November 2004. Officials
updated contact information for all participants in 2005, and they plan to
conduct a follow-up health survey of participants in early 2006. Registry
officials would like to conduct subsequent follow-up surveys periodically
through about 2023-20 years after the program began in 2003-but have not
yet secured funding for long-term monitoring.19

The registry is designed to provide a basis for research to evaluate the
long-term health consequences of the disaster. It includes contact
information for people affected by the WTC attack, information on
individuals' experiences and exposures during the disaster, and
information on their health. In November 2004, registry officials
published preliminary results on the health status of registry
participants, and officials expect to submit several research papers for
publication within the next year. In addition, in May 2005, registry
officials published guidelines for allowing registry information to be
used in scientific research,20 and they have since approved three
proposals for external research projects that use registry information.
These proposals include two studies of building evacuations and a study of
psychological responses to terrorism.

17See, for example, CDC, "Injuries and Illnesses among New York City Fire
Department Rescue Workers after Responding to the World Trade Center
Attacks," Morbidity and Mortaly Weekly Report, vol. 51 (2002), and
Elizabeth M. Fireman and others, "Induced Sputum Assessment in NYC
Firefighters Exposed to World Trade Center Dust," Environmena Health
Perspectives, vol. 112 (2004).

18CDC, Morbidity and Mortality Weekly Report, vol. 53, p. 807, and CDC,
Morbidity and Mortaly Weekly Report, vol. 53, p. 812.

19Program officials told us that the registry was designed as a 20-year
program because most long-term health effects that might result from the
WTC disaster would likely begin to appear in the population within that
period of time.

Program Officials Are Concerned That Current Federal Funding Arrangements Will
End before Needed Monitoring Is Complete

Officials from the FDNY, worker and volunteer, and WTC Health Registry
programs are concerned that current federal funding arrangements for
programs designed to track participants' health over time may be too short
to allow for identification of all the health effects that may eventually
develop. ATSDR plans to fund the WTC Health Registry through April 2008,
and NIOSH plans to fund the FDNY program and the worker and volunteer
program through mid-2009. ATSDR's 5-year cooperative agreement with the
New York City Department of Health and Mental Hygiene to support the WTC
Health Registry went into effect April 30, 2003, and extends through April
29, 2008. Similarly, NIOSH awarded 5-year grants in July 2004 to continue
the FDNY and worker and volunteer programs, which had begun in 2001 and
2002, respectively. Health experts involved in these monitoring programs,
however, cite the need for long-term monitoring of affected groups because
some possible health effects, such as cancer, may not appear until decades
after a person has been exposed to a harmful agent. They also told us that
monitoring is important for identifying and assessing the occurrence of
newly identified conditions, such as WTC cough, and chronic conditions,
such as asthma.

HHS's Program for Screening Federal Responders Has Accomplished Little and Is on
                                      Hold

HHS's OPHEP established the WTC Federal Responder Screening Program to
provide medical screening examinations for an estimated 10,000 federal
workers who responded to the WTC disaster in an official capacity and were
not eligible for any other medical monitoring program. OPHEP did not
develop a comprehensive list of federal responders who were eligible for
the program. The program began in June 2003-about a year later than other
monitoring programs-and completed screenings for 394 workers. No
examinations have occurred since March 2004, because officials placed the
program on hold, temporarily suspending new examinations. The program is
still on hold, and OPHEP officials are taking actions intended to lead to
restarting the program. We identified two federal agencies that
established screening programs for their own personnel who responded to
the disaster.

20Under the guidelines, a review committee consisting of public health
scientists and stakeholder representatives evaluates each proposed
research project based on criteria such as the proposal's scientific and
technical merit, funding, and contribution to a community or individuals.

HHS Program Screened Few Federal Workers and Has Been on Hold for over 1 Year

HHS's WTC Federal Responder Screening Program was established to provide
free voluntary medical screening examinations for an estimated 10,000
federal workers21 whom their agencies sent to respond to the WTC disaster
from September 11, 2001, through September 10, 2002, and who were not
eligible for any other monitoring program.22 FEMA provided $3.74 million
through an interagency agreement with HHS's OPHEP for the purpose of
developing and implementing the program. OPHEP entered into an agreement
with HHS's FOH to schedule and conduct the screening examinations.

The launching of the federal responder screening program lagged behind the
implementation of other federally funded monitoring programs for WTC
responders. For example, the medical screening program for New York State
employees and the worker and volunteer program started conducting
screening examinations in May 2002 and July 2002, respectively. However,
OPHEP did not launch its program until June 2003. (Figure 1 highlights key
actions in developing and implementing the program.)

21For this program, a federal worker is defined as being either a
permanent, temporary, or intermittent federal employee.

22According to a FEMA official, federal workers who did not receive
official orders from their agencies to respond to the WTC disaster are not
eligible for this program. According to an official of the worker and
volunteer program, federal workers who volunteered on their own in the
aftermath of the disaster were eligible to participate in that screening
program.

Figure 1: Timeline of Key Actions Related to WTC Federal Responder
Screening Program

OPHEP did not develop a plan for identifying all federal agencies and
their personnel that responded to the WTC disaster or for contacting all
federal personnel eligible for the screening program. Although OPHEP and
FEMA developed a partial list of federal responders-consisting primarily
of HHS and FEMA personnel-OPHEP did not have a comprehensive list of
agencies and personnel, and so could not inform all eligible federal
responders about the WTC screening program. The program's principal action
to communicate with the federal responders was to place program
information and registration forms on FEMA's National Disaster Medical
System (NDMS) Web site.23

The screening program had operated for about 6 months when OPHEP officials
decided in January 2004 to place it on hold by temporarily suspending
examinations. FOH officials told us that they completed 394 screening
examinations24 from June 2003 through March 2004,25 with most completed by
the end of September 2003. According to FOH, a total of $177,967 was spent
on examinations.26 As of September 7, 2005, the program remained on hold,
with 37 people on the waiting list for examinations,27 and OPHEP has not
set a date for resuming the examination process.

OPHEP officials told us that three operational issues contributed to the
decision to suspend the program. First, OPHEP could not inform all
eligible federal responders about the program because it lacked a
comprehensive list of eligible federal responders. Second, there were
concerns about what actions FOH clinicians could take when screening
examinations identified problems. Based on the examinations that had been
completed before the program was placed on hold, FOH clinicians determined
that many participants needed additional diagnostic testing and follow-up
care, primarily in the areas of respiratory functioning and mental health.
However, under the existing interagency agreement there was no provision
for providing follow-up care and no direction for clinicians on how to
handle the provision of further diagnostic tests, treatment, or referrals.
FOH officials told us that they were concerned about continuing to provide
screening examinations without the ability to provide participants with
additional needed services. Third, although the screening program had been
established to provide examinations to all federal responders regardless
of their current federal employment status, HHS officials told us that the
department determined that FOH does not have the authority to provide
examinations to people who are no longer in federal service. OPHEP
officials told us in September 2005 that they were exploring avenues for
providing examinations to federal responders who were no longer federal
employees.

23NDMS provides medical care to victims and responders to domestic
disaster, including acts of terrorism and natural disasters. According to
HHS officials, when NDMS was transferred to FEMA in 2003 as part of the
formation of DHS, key NDMS staff involved in the initial planning of the
screening program were also transferred. During the transition period,
these NDMS staff continued to carry out some tasks related to the
screening program, including working to identify agencies that had sent
employees to the WTC disaster, developing a list of federal responders,
and placing information about the program on the NDMS Web site. Officials
said that overall program management responsibility and funding remained
with HHS.

24FOH officials told us that although FOH clinicians had seen
approximately 460 federal personnel, not all of them completed the entire
examination process.

25FOH continued to schedule and conduct examinations for those people who
had requested an examination before the program was placed on hold in
January 2004.

26FOH officials told us that this amount includes spending on the 394
completed examinations and on examinations that were not completed.

27FOH officials told us that these 37 applications were received after the
screening program was placed on hold in January 2004.

OPHEP has begun to take action to prepare for offering examinations again.
In April 2005, program officials enlisted the assistance of ATSDR-which
had successfully developed the WTC Health Registry-to help develop the
needed lists of federal agencies and personnel for the federal responder
program. OPHEP executed an agreement with ATSDR that allocated about
$491,000 from the program's remaining allocation from FEMA to ATSDR.28
Under this agreement, which is scheduled to run through April 2006, ATSDR
is working with the contractor it used to develop the WTC Health Registry
to develop a new registration Web site, develop and implement a
comprehensive recruitment and enrollment plan for current and former
federal workers, and establish a database containing the names of federal
responders. On September 1, 2005, OPHEP sent a letter to 51 federal
agencies requesting them to provide ATSDR's contractor with contact
information on the employees they sent to respond to the WTC disaster.

In July 2005, OPHEP and FOH executed a new agreement so that when the
program begins examining responders again, FOH clinicians will be able to
make referrals for follow-up care. For example, they will be able to refer
participants with mental health symptoms to an FOH employee assistance
program for a telephone assessment. If appropriate, the participant will
be referred to an employee assistance program counselor for up to six
in-person sessions. If the assessment indicates that longer treatment is
necessary, the participant instead will be advised to use health insurance
to obtain care or to contact a local Department of Labor Office of
Workers' Compensation to file a claim, receive further evaluation, and
possibly obtain compensation for mental health services. The new agreement
between OPHEP and FOH also will allow FOH clinicians to order additional
clinical tests, such as special pulmonary and breathing tests.

28According to OPHEP, as of August 22, 2005, about $3 million of the
original $3.74 million allocated by FEMA for this screening program
remained.

Two Federal Agencies Established Their Own Screening Programs

We identified two federal agencies that established medical screening
programs to assess the health of the personnel they had sent to respond to
the WTC disaster. One agency, the Army, established two screening
programs-one specifically for Army Corps of Engineers personnel and one
that also included other Army responders. The Army Corps of Engineers
established a voluntary program to assess the health of 356 employees it
had sent to respond to the disaster.29 The program, initiated in November
2001, consists of sending employees an initial medical screening
questionnaire covering physical health issues.30 If questionnaire results
indicate symptoms or concerns that need further evaluation, the employee
is offered a medical examination.31 As of August 2004, 92 Corps of
Engineers employees had participated in the program, with 40 receiving
follow-up examinations. The Army's Center for Health Promotion and
Preventive Medicine initiated a program-the World Trade Center Support
Health Assessment Survey-in January 2002. It was designed as a voluntary
medical screening for Army military and civilian personnel, including
contractors. From January 2002 through September 2003, questionnaires were
sent to 256 employees.32 According to DOD, 162 employees completed and
returned their questionnaires. In addition, the U.S. Marshals Service,
within the Department of Justice, modified an existing agreement with FOH
in 2003 for FOH to screen approximately 200 U.S. Marshals Service
employees assigned to the WTC or Pentagon recovery sites. The one-time
assessment includes a screening questionnaire and a medical examination.33
FOH officials said that as of August 2005, 88 of the 200 U.S. Marshals
Service employees had requested and obtained examinations.34

29The screening program has no closing date, and employees can request a
screening examination at any time.

30The questionnaire collects information on prior and WTC-related
occupational exposures and prior and current physical health status.

31The medical examination includes a comprehensive history and physical
examination, chest X-ray, and pulmonary function, blood, and urine tests.

32The Army's questionnaire was distributed to active-duty service members,
activated members of the Reserves and National Guard, civilian employees,
and civilian contractors. These included 125 New Jersey Army National
Guard members. The 474 active-duty members of the New York Army National
Guard who responded to the WTC disaster were not included due to their
eligibility to participate in the medical screening program established
for New York State workers.

Lessons from WTC Health Monitoring Programs Could Assist Future Monitoring
                                    Efforts

Officials involved in the WTC health monitoring programs implemented by
state and local governments or private organizations-including officials
from the federal administering agencies-derived lessons from their
experiences that could help officials design such programs in the future.
They include the need to quickly identify and contact people affected by a
disaster, the value of a centrally coordinated approach for assessing
individuals' health, the importance of monitoring both physical and mental
health, and the need to plan for providing referrals for treatment when
screening examinations identify health problems.

Officials involved in the monitoring programs emphasized the importance of
quickly identifying and contacting people affected by a disaster. They
said that potential monitoring program participants can become more
difficult to locate as time passes.35 In addition, potential participants'
ability to recall the events of a disaster may decrease over time, making
it more difficult to collect accurate information about their experiences
and health. However, the time it takes to design, fund, approve, and
implement monitoring programs can lead to delays in contacting the people
who were affected. For example, the WTC Health Registry received funding
in July 2002 but did not begin collecting data until September 2003-2
years after the disaster. From July 2002 through September 2003, the
program's activities included developing the registry protocol, testing
the questionnaire, and obtaining approval from institutional review boards
and the federal Office of Management and Budget.36 This delayed the
collection of information from participants. To prevent similar delays
during the response to future disasters, ATSDR officials are developing a
questionnaire, known as the Rapid Response Registry, to allow officials to
identify and locate potentially affected individuals immediately after a
disaster and collect basic preliminary information, such as their current
contact information and their location during the disaster.37 ATSDR
officials expect that using this instrument would reduce delays in
collecting time-sensitive information while officials take the time
necessary to develop a monitoring program for disaster-related health
effects.

33The medical examination includes an occupational exposure history and
physical examination, chest X-ray, blood and urine tests, pulmonary
function test, audiogram, and electrocardiogram.

34FOH officials told us that under the terms of the agreement, eligible
employees can still request a screening examination.

35The extent of the challenge of locating potential participants varied
among WTC monitoring programs, depending on the population involved. For
example, FDNY had contact information for all potential participants in
its monitoring program because they were employed by FDNY during or after
the disaster. In contrast, the worker and volunteer program and the WTC
Health Registry had to expend considerable effort to identify people who
were eligible to participate and inform them about the programs.

Furthermore, officials told us that health monitoring for future disasters
could benefit from additional centrally coordinated planning. Such
planning could facilitate the collection of compatible data among
monitoring efforts, to the extent that this is appropriate. Collecting
compatible data could allow information from different programs to be
integrated and contribute to improved data analysis and more useful
research. In addition, centrally coordinated planning could help officials
determine whether separate programs are necessary to serve different
groups of people. For example, worker and volunteer program officials
indicated that it might have been possible for that program to serve
federal workers who responded to the disaster in an official capacity,
which might have eliminated the need to organize and administer a separate
program for them.

Officials also stated that screening and monitoring programs should be
comprehensive, encompassing both physical and mental health evaluations.
Worker and volunteer medical monitoring program officials told us that the
initial planning for the program had focused primarily on screening
participants' physical health, and that they did not originally budget for
extensive mental health screening. Subsequently, they recognized a need
for more extensive mental health screening, including greater
participation of mental health professionals, but the program's federal
funding was not sufficient to cover such screening. By collaborating with
the Mount Sinai School of Medicine Department of Psychiatry, program
officials were able to obtain philanthropic funding to develop a more
comprehensive mental health questionnaire, provide on-site psychiatric
screening, and, when necessary, provide more extensive evaluations.

36Institutional review boards are groups that have been formally
designated to review and monitor biomedical research involving human
subjects. Under the Paperwork Reduction Act, agencies are required to
submit proposed information collections to the Office of Management and
Budget for approval. See, 44 U.S.C. S: 3507.

37The Rapid Response Registry has been approved by CDC's Institutional
Review Board and has undergone initial review by the Office of Management
and Budget.

Many participants in the monitoring programs required additional testing
or needed treatment for health problems that were identified during
screening examinations. Officials told us that finding treatment sources
for such participants is an important, but challenging, part of the
programs' responsibility. For example, officials from the worker and
volunteer program stated that identifying providers available to treat
participants became a major part of their operations, and was especially
difficult when participants lacked health insurance. The officials said
that planning for future monitoring programs should include a
determination of how best to help participants obtain needed treatment.

                            Concluding Observations

Federally funded programs implemented by state and local governments or
private organizations to monitor the health effects of the WTC attack on
thousands of people who responded to the disaster have made progress.
However, the program HHS established to screen the federal employees whose
agencies sent them to the WTC after the attack has accomplished little,
completing screenings of fewer than 400 of the thousands of federal
responders. Moreover, no examinations have occurred for over a year.
Because of this program's limited activity, and the inability of federal
workers to participate in other monitoring programs because of the
assumption that they would have the opportunity to receive screening
examinations through the HHS program, many federal responders may not have
had an opportunity to identify and seek treatment for health problems
related to the WTC disaster. For state responders, the opportunity for
continued monitoring could be lost if they are not informed that they are
now eligible to participate in the worker and volunteer program.

Based on their experiences, officials involved in the monitoring programs
have made a number of useful observations that will apply to future
terrorist attacks and natural disasters such as Hurricane Katrina. For
example, screening for mental as well as physical health problems in New
Orleans and along the Gulf Coast will be critical to the recovery of
survivors of Hurricane Katrina and the responders to the disaster. The
federal, state, and local government officials who are responsible for
planning and implementing health monitoring activities in the aftermath of
disasters could improve their effectiveness by incorporating the lessons
learned from the World Trade Center experience.

Mr. Chairman, this completes my prepared remarks. I would be happy to
respond to any questions you or other Members of the Subcommittee may have
at this time.

                          Contact and Acknowledgments

For further information about this testimony, please contact Cynthia A.
Bascetta at (202) 512-7101 or [email protected]. Contact points for our
Offices of Congressional Relations and Public Affairs may be found on the
last page of this statement. Helene F. Toiv, Assistant Director; George H.
Bogart; Alice L. London; Roseanne Price; and William R. Simerl made key
contributions to this statement.

Appendix I: Abbreviations

ATSDR Agency for Toxic Substances and Disease Registry CDC Centers for
Disease Control and Prevention DHS Department of Homeland Security DOD
Department of Defense DOJ Department of Justice FDNY New York City Fire
Department FDNY-BHS New York City Fire Department Bureau of Health
Services FEMA Federal Emergency Management Agency FOH Federal Occupational
Health Services HHS Department of Health and Human Services NDMS National
Disaster Medical System NIOSH National Institute for Occupational Safety
and Health NYC New York City OPHEP Office of Public Health Emergency
Preparedness RTI Research Triangle Institute WTC World Trade Center

Appendix II: Government Agencies That Sent Responders Following the World
Trade Center Attack

Through our work, we identified the following agencies that sent employees
to respond to the World Trade Center attack of September 11, 2001.

                                Federal Agencies

Department of Defense Department of Energy Department of Health and Human
Services Agency for Toxic Substances and Disease Registry Centers for
Disease Control and Prevention National Institutes of Health Substance
Abuse and Mental Health Services Administration Department of Homeland
Security Federal Emergency Management Agency1 U.S. Coast Guard2 Department
of the Interior National Park Service Department of Justice Federal Bureau
of Investigation U.S. Marshals Service Department of Labor Occupational
Safety and Health Administration Environmental Protection Agency

                            New York State Agencies

Department of Environmental Conservation Department of Health Division of
Military and Naval Affairs Emergency Management Office Office of Mental
Health

1At the time of the World Trade Center attack, the Federal Emergency
Management Agency was an independent agency.

2At the time of the World Trade Center attack, the U.S. Coast Guard was in
the Department of Transportation.

                             New York City Agencies

Department of Design and Construction Department of Environmental
Protection Department of Health and Mental Hygiene Department of
Sanitation Fire Department Metropolitan Transportation Authority Office of
Emergency Management Police Department

(290482)

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Highlights of GAO-05-1020T , a testimony before the Subcommittee on
National Security, Emerging Threats, and International Relations,
Committee on Government Reform, House of Representatives

September 10, 2005

SEPTEMBER 11

Monitoring of World Trade Center Health Effects Has Progressed, but Not
for Federal Responders

After the 2001 attack on the World Trade Center (WTC), nearly 3,000 people
died and an estimated 250,000 to 400,000 people who lived, worked, or
attended school in the vicinity were affected. An estimated 40,000 people
who responded to the disaster-including New York City Fire Department
(FDNY) personnel and other government and private-sector workers and
volunteers-were exposed to numerous physical and mental health hazards.
Concerns remain about the long-term health effects of the attack and about
the nation's capacity to plan for and respond to both short- and long-term
health effects in the event of a future attack or other disaster.

Several federally funded programs have monitored the physical and mental
health effects of the WTC attack. These monitoring programs include
one-time screening programs and programs that also conduct follow-up
monitoring. GAO was asked to assess the progress of these programs. GAO
examined (1) federally funded programs implemented by state and local
government agencies or private institutions, (2) federally administered
programs to monitor the health of federal workers who responded to the
disaster in an official capacity, and (3) lessons learned from WTC
monitoring programs. GAO reviewed program documents and interviewed
federal, state, and local officials and others involved in WTC monitoring
programs.

Three federally funded monitoring programs implemented by state and local
governments or private organizations after the WTC attack have provided
initial medical examinations--and in some cases follow-up examinations--to
thousands of affected responders to screen for health problems. For
example, the FDNY medical monitoring program completed initial screening
for over 15,000 firefighters and emergency medical service personnel, and
the worker and volunteer program screened over 14,000 other responders.
The New York State responder screening program screened about 1,700 state
responders before ending its examinations in 2003. Most state responders
have not been informed that they are now eligible to participate in the
worker and volunteer program, and New York State responders could miss the
opportunity for continued monitoring. These monitoring programs and the
WTC Health Registry have collected information that program officials
believe researchers could use to help better understand the health
consequences of the attack and improve treatment. Program officials
expressed concern, however, that current federal funding arrangements for
long-term monitoring may be too short to allow for identification of all
future health effects.

In contrast to the progress made by other federally funded programs, the
Department of Health and Human Services' (HHS) program to screen federal
workers who were sent by their agencies to respond to the WTC disaster has
accomplished little and is on hold. The program-which started about one
year later than other WTC monitoring programs-completed screening of 394
of the estimated 10,000 federal workers who responded in an official
capacity to the disaster, but HHS officials suspended examinations and the
program has not screened anyone since March 2004. The program's limited
activity and the exclusion of federal workers from other monitoring
programs because of the assumption that they could receive screening
examinations through the HHS program may have resulted in many federal
responders losing the opportunity to identify and seek treatment for their
WTC-related health problems.

Officials involved in WTC health monitoring programs cited lessons from
their experiences that could help others who may be responsible for
designing and implementing health monitoring efforts that follow other
disasters, such as Hurricane Katrina. These include the need to quickly
identify and contact people affected by a disaster; to monitor for mental
health effects, as well as physical injuries and illnesses; and to
anticipate when designing disaster-related monitoring efforts that there
will likely be many people who require referrals for follow-up care and
that handling the referral process may require substantial effort. HHS and
New York State officials provided comments on the facts contained in this
testimony and GAO made changes as appropriate.
*** End of document. ***