September 11: Improvements Needed in Availability of Health	 
Screening and Monitoring Services for Responders (18-SEP-07,	 
GAO-07-1228T).							 
                                                                 
Six years after the attack on the World Trade Center (WTC),	 
concerns persist about health effects experienced by WTC	 
responders and the availability of health care services for those
affected. Several federally funded programs provide screening,	 
monitoring, or treatment services to responders. GAO has	 
previously reported on the progress made and implementation	 
problems faced by these WTC health programs. This testimony is	 
based on and updates GAO's report, September 11: HHS Needs to	 
Ensure the Availability of Health Screening and Monitoring for	 
All Responders (GAO-07-892, July 23, 2007). In this testimony,	 
GAO discusses the status of (1) services provided by the	 
Department of Health and Human Services' (HHS) WTC Federal	 
Responder Screening Program, (2) efforts by the Centers for	 
Disease Control and Prevention's National Institute for 	 
Occupational Safety and Health (NIOSH) to provide services for	 
nonfederal responders residing outside the New York City (NYC)	 
area, and (3) NIOSH's awards to WTC health program grantees for  
treatment services.						 
-------------------------Indexing Terms------------------------- 
REPORTNUM:   GAO-07-1228T					        
    ACCNO:   A76388						        
  TITLE:     September 11: Improvements Needed in Availability of     
Health Screening and Monitoring Services for Responders 	 
     DATE:   09/18/2007 
  SUBJECT:   Disease detection or diagnosis			 
	     Federal aid programs				 
	     Federal employees					 
	     Health care programs				 
	     Health care services				 
	     Health hazards					 
	     Occupational health and safety programs		 
	     Program management 				 
	     Terrorism						 
	     HHS WTC Federal Responder Screening		 
	     Program						 
                                                                 

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GAO-07-1228T

   

     * [1]Background

          * [2]Health Effects
          * [3]Overview of WTC Health Programs
          * [4]Federal Funding and Coordination of WTC Health Programs

     * [5]WTC Federal Responder Screening Program Has Had Difficulties
     * [6]NIOSH Has Not Ensured the Availability of Services for Nonfe
     * [7]NIOSH Awarded Funding for Treatment Services to Four WTC Hea
     * [8]Concluding Observations
     * [9]Contacts and Acknowledgments
     * [10]Appendix I: Abbreviations
     * [11]Related GAO Products

          * [12]Order by Mail or Phone

Testimony

Before the Subcommittee on Health, Committee on Energy and Commerce, House
of Representatives

United States Government Accountability Office

GAO

For Release on Delivery
Expected at 10:00 a.m. EDT
Tuesday, September 18, 2007

SEPTEMBER 11

Improvements Needed in Availability of Health Screening and Monitoring
Services for Responders

Statement of Cynthia A. Bascetta
Director, Health Care

GAO-07-1228T

Mr. Chairman and Members of the Subcommittee:

I am pleased to be here today to discuss our work on the implementation of
federally funded health programs for individuals affected by the September
11, 2001, attack on the World Trade Center (WTC).1 Tens of thousands of
people served as responders in the aftermath of the WTC disaster,
including New York City Fire Department (FDNY) personnel, federal
government personnel, and other government and private-sector workers and
volunteers from New York and elsewhere. By responders we are referring to
anyone involved in rescue, recovery, or cleanup activities at or near the
vicinity of the WTC or the Staten Island site.2 These responders were
exposed to numerous physical hazards, environmental toxins, and
psychological trauma. Six years after the destruction of the WTC
buildings, concerns remain about the physical and mental health effects of
the disaster, the long-term nature of some of these health effects, and
the availability of health care services for those affected.

Following the WTC attack, federal funding was provided to government
agencies and private organizations to establish programs for screening,
monitoring, or treating responders for illnesses and conditions related to
the WTC disaster; these programs are referred to in this testimony as the
WTC health programs.3,4 The Department of Health and Human Services (HHS)
funded the programs as separate efforts serving different categories of
responders--for example, firefighters, other workers and volunteers, or
federal responders--and has responsibility for coordinating program
efforts.

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

2The Staten Island site is the landfill that is the off-site location of
the WTC recovery operation.

3In this testimony, "screening" refers to initial physical and mental
health examinations of affected individuals. "Monitoring" refers to
tracking the health of individuals over time, either through periodic
surveys or through follow-up physical and mental health examinations.

4One of the WTC health programs, the WTC Health Registry, also includes
people living or attending school in the area of the WTC or working or
present in the vicinity on September 11, 2001.

We have previously reported on the implementation of these programs and
their progress in providing services to responders,5 who reside in all 50
states and the District of Columbia. In 2005 and 2006, we reported that
one of the WTC health programs, HHS's WTC Federal Responder Screening
Program, which was established to provide onetime screening examinations
for responders who were federal employees when they responded to the WTC
attack, had accomplished little.6 HHS established the program in June
2003, suspended it in March 2004, and resumed it in December 2005. In
September 2006, we reported that the program was registering and screening
federal responders and that a total of 907 federal workers had received
screening examinations.7 We also reported that the National Institute for
Occupational Safety and Health (NIOSH), the component of HHS's Centers for
Disease Control and Prevention (CDC) responsible for administering most of
the WTC health programs, had begun to take steps to provide access to
screening, monitoring, and treatment services for nonfederal responders
who resided outside the New York City (NYC) metropolitan area.8

In September 2006 we also testified that CDC had begun, but not completed,
the process of allocating funding from a $75 million appropriation made in
fiscal year 2006 for WTC health programs for responders.9,10 This was the
first appropriation specifically available for treatment for responders.
We reported that in August 2006 CDC had awarded $1.5 million from this
appropriation to the FDNY WTC Medical Monitoring and Treatment Program and
almost $1.1 million to the New York/New Jersey (NY/NJ) WTC Consortium for
treatment-related activities. We also reported that CDC officials told us
they could not predict how long the funding from the appropriation would
support four WTC health programs that provide treatment services.

5See, for example, GAO, September 11: HHS Has Screened Additional Federal
Responders for World Trade Center Health Effects, but Plans for Awarding
Funds for Treatment Are Incomplete, [13]GAO-06-1092T (Washington, D.C.:
Sept. 8, 2006). A list of related GAO products is included at the end of
this testimony.

6See GAO, September 11: Monitoring of World Trade Center Health Effects
Has Progressed, but Not for Federal Responders,  [14]GAO-05-1020T 
(Washington, D.C.: Sept. 10, 2005), and September 11: Monitoring of World
Trade Center Health Effects Has Progressed, but Program for Federal
Responders Lags Behind, [15]GAO-06-481T (Washington, D.C.: Feb. 28, 2006).

7See [16]GAO-06-1092T .

8In general, the WTC health programs provide services in the NYC
metropolitan area.

9Department of Defense Appropriations Act, 2006, Pub. L. No. 109-148, S
5011(b), 119 Stat. 2680, 2814 (2005).

10See [17]GAO-06-1092T .

My testimony today is primarily based on our report issued in July 2007.11
As you requested, I will discuss the status of (1) services provided by
the WTC Federal Responder Screening Program, (2) NIOSH's efforts to
provide services for nonfederal responders residing outside the NYC
metropolitan area, and (3) NIOSH's awards to grantees for treatment
services.

To assess the status of services provided by the WTC Federal Responder
Screening Program, we obtained and reviewed program data and documents
from HHS, including applicable interagency agreements. We interviewed
officials from the HHS entities involved in administering and implementing
the program: NIOSH and two HHS offices, the Federal Occupational Health
Services (FOH)12 and the Office of the Assistant Secretary for
Preparedness and Response (ASPR).13 To assess the status of NIOSH's
efforts to provide services for nonfederal responders residing outside the
NYC metropolitan area, we obtained documents and interviewed officials
from NIOSH. We also interviewed officials of organizations that worked
with NIOSH to provide or facilitate services for nonfederal responders
residing outside the NYC metropolitan area, including the Mount Sinai
School of Medicine in NYC and the Association of Occupational and
Environmental Clinics (AOEC)--a network of university-affiliated and other
private occupational health clinics across the United States and in
Canada. To assess the status of NIOSH's awards to grantees for treatment
services, we obtained documents and interviewed officials from NIOSH. We
also interviewed officials from two WTC health program grantees14 from
which the majority of responders receive medical services: the NY/NJ WTC
Consortium15 and the FDNY WTC program. In addition, we interviewed
officials from the American Red Cross, which has funded treatment services
for responders. In our review of the WTC health programs, we relied
primarily on information provided by agency officials and contained in
government publications. We compared the information with information in
other supporting documents, when available, to determine its consistency
and reasonableness. We determined that the information we obtained was
sufficiently reliable for our purposes. We conducted our work from
November 2006 through July 2007--and updated selected information in
August and September 2007--in accordance with generally accepted
government auditing standards.

11See GAO, September 11: HHS Needs to Ensure the Availability of Health
Screening and Monitoring for All Responders, [18]GAO-07-892 (Washington,
D.C.: July 23, 2007).

12FOH is a service unit within HHS's Program Support Center that provides
occupational health services to federal government departments and
agencies located throughout the United States.

13ASPR coordinates and directs HHS's emergency preparedness and response
program. In December 2006 the Office of Public Health and Emergency
Preparedness became ASPR. We refer to that office as ASPR throughout this
testimony, regardless of the time period discussed.

In brief, we reported in July 2007 that HHS's WTC Federal Responder
Screening Program had had difficulties ensuring the uninterrupted
availability of screening services for federal responders and that NIOSH,
the administrator of the program, was considering expanding the program to
include monitoring but had not done so. We also reported that NIOSH had
not ensured the availability of screening and monitoring services for
nonfederal responders residing outside the NYC metropolitan area, although
it had recently taken steps toward expanding the availability of these
services. As a result of our assessment of these programs, we recommended
that the Secretary of HHS expeditiously take action to ensure that
screening and monitoring services are available for all responders,
including federal responders and nonfederal responders residing outside of
the NYC metropolitan area. As of early September 2007 the department has
not responded to this recommendation. Finally, we also reported that NIOSH
had awarded and set aside treatment funds totaling $51 million from its
$75 million appropriation for four NYC-area programs.

14NIOSH provides funds to the programs through cooperative agreements, but
refers to award recipients as grantees. Therefore, in this testimony we
use the term grantee when referring to NIOSH's award recipients.

15In previous reports we have also referred to this program as the worker
and volunteer WTC program.

Background

The tens of thousands of individuals16 who responded to the September 11,
2001, attack on the WTC experienced the emotional trauma of the disaster
and were exposed to a noxious mixture of dust, debris, smoke, and
potentially toxic contaminants, such as pulverized concrete, fibrous
glass, particulate matter, and asbestos. A wide variety of health effects
have been experienced by responders to the WTC attack, and several
federally funded programs have been created to address the health needs of
these individuals.

Health Effects

Numerous studies have documented the physical and mental health effects of
the WTC attacks.17 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. One study
suggested that exposed firefighters on average experienced a decline in
lung function equivalent to that which would be produced by 12 years of
aging.18 A recently published study found a significantly higher risk of
newly diagnosed asthma among responders that was associated with increased
exposure to the WTC disaster site.19 Commonly reported mental health
effects among responders and other affected individuals included symptoms
associated with post-traumatic stress disorder (PTSD), depression, and
anxiety. Behavioral health effects such as alcohol and tobacco use have
also been reported.

16There is not a definitive count of the number of people who served as
responders. Estimates have ranged from about 40,000 to about 91,000.

17See, 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); "Physical 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);
and "Surveillance for World Trade Center Disaster Health Effects among
Survivors of Collapsed and Damaged Buildings," Morbidity and Mortality
Weekly Report, vol. 55 (2006). See also G. I. Banauch et al., "Pulmonary
Function after Exposure to the World Trade Center in the New York City
Fire Department," American Journal of Respiratory and Critical Care
Medicine, vol. 174, no. 3 (2006); G. Izbicki et al., "World Trade Center
`Sarcoid Like' Granulomatous Pulmonary Disease in New York City Fire
Department Rescue Workers," Chest, vol. 131 (2007); and K. Wheeler et al.,
"Asthma Diagnosed after September 11, 2001 among Rescue and Recovery
Workers: Findings from the World Trade Center Health Registry,"
Environmental Health Perspectives, [19]http://dx.doi.org/10.1289/ehp.10248
(downloaded Aug. 27, 2007).

18Banauch et al., "Pulmonary Function."

19Wheeler et al., "Asthma Diagnosed."

Some health effects experienced by responders have persisted or worsened
over time, leading many responders to begin seeking treatment years after
September 11, 2001. Clinicians involved in screening, monitoring, and
treating responders have found that many responders' conditions--both
physical and psychological--have not resolved and have developed into
chronic disorders that require long-term monitoring. For example, findings
from a study conducted by clinicians at the NY/NJ WTC Consortium show that
at the time of examination, up to 2.5 years after the start of the rescue
and recovery effort, 59 percent of responders enrolled in the program were
still experiencing new or worsened respiratory symptoms.20 Experts
studying the mental health of responders found that about 2 years after
the WTC attack, responders had higher rates of PTSD and other
psychological conditions compared to others in similar jobs who were not
WTC responders and others in the general population.21 Clinicians also
anticipate that other health effects, such as immunological disorders and
cancers, may emerge over time.

Overview of WTC Health Programs

There are six key programs that currently receive federal funding to
provide voluntary health screening, monitoring, or treatment at no cost to
responders.22 The six WTC health programs, shown in table 1, are (1) the
FDNY WTC Medical Monitoring and Treatment Program; (2) the NY/NJ WTC
Consortium, which comprises five clinical centers in the NY/NJ area;23 (3)
the WTC Federal Responder Screening Program; (4) the WTC Health Registry;
(5) Project COPE; and (6) the Police Organization Providing Peer
Assistance (POPPA) program.24 The programs vary in aspects such as the HHS
administering agency or component responsible for administering the
funding; the implementing agency, component, or organization responsible
for providing program services; eligibility requirements; and services.

20R. Herbert et al., "The World Trade Center Disaster and the Health of
Workers: Five-Year Assessment of a Unique Medical Screening Program,"
Environmental Health Perspectives, vol. 114, no. 12 (2006).

21For example, see R. Gross et al., "Posttraumatic Stress Disorder and
Other Psychological Sequelae among World Trade Center Clean Up and
Recovery Workers," Annals of the New York Academy of Sciences, vol. 1071
(2006). M. Perrin et al., "Differences in PTSD Prevalence and Associated
Risk Factors among World Trade Center Disaster Rescue and Recovery
Workers," American Journal of Psychiatry, vol. 64 (2007).

22In addition to these programs, a New York State responder screening
program received federal funding for screening New York State employees
and National Guard personnel who responded to the WTC attack in an
official capacity. This program ended its screening examinations in
November 2003.

23The NY/NJ WTC Consortium consists of five clinical centers operated by
(1) Mount Sinai-Irving J. Selikoff Center for Occupational and
Environmental Medicine; (2) Long Island Occupational and Environmental
Health Center at SUNY, Stony Brook; (3) New York University School of
Medicine/Bellevue Hospital Center; (4) Center for the Biology of Natural
Systems, at CUNY, Queens College; and (5) University of Medicine and
Dentistry of New Jersey Robert Wood Johnson Medical School, Environmental
and Occupational Health Sciences Institute. Mount Sinai's clinical center,
which is the largest of the five centers, also receives federal funding to
operate a data and coordination center to coordinate the work of the five
clinical centers and conduct outreach and education, quality assurance,
and data management for the NY/NJ WTC Consortium.

24Project COPE and the POPPA program provide mental health services to
members of the New York City Police Department (NYPD) and operate
independently of the NYPD.

Table 1: Key Federally Funded WTC Health Programs, June 2007

                HHS            Implementing                                   
                administering  agency,                                        
                agency or      component, or  Eligible                        
Program      component      organization   population    Services provided 
FDNY WTC     NIOSH          FDNY Bureau of Firefighters     o Initial      
Medical                     Health         and emergency    screening      
Monitoring                  Services       medical          o Follow-up    
and                                        service          medical        
Treatment                                  technicians      monitoring     
Program                                                     o Treatment of 
                                                               WTC-related    
                                                               physical and   
                                                               mental health  
                                                               conditions     
NY/NJ WTC    NIOSH          Five clinical  All              o Initial      
Consortium                  centers, one   responders,      screening      
                               of which, the  excluding        o Follow-up    
                               Mount          FDNY             medical        
                               Sinai-Irving   firefighters     monitoring     
                               J. Selikoff    and emergency    o Treatment of 
                               Center for     medical          WTC-related    
                               Occupational   service          physical and   
                               and            technicians      mental health  
                               Environmental  and current      conditions     
                               Medicine, also federal                         
                               serves as the  employeesa                      
                               consortium's                                   
                               Data and                                       
                               Coordination                                   
                               Center (DCC)                                   
WTC Federal  NIOSHb         FOH            Current          o Onetime      
Responder                                  federal          screening      
Screening                                  employees who    o Referrals to 
Program                                    responded to     employee       
                                              the WTC          assistance     
                                              attack in an     programs and   
                                              official         specialty      
                                              capacity         diagnostic     
                                                               servicesc      
WTC Health   Agency for     NYC Department Responders       o Long-term    
Registry     Toxic          of Health and  and people       monitoring     
                Substances and Mental Hygiene living or        through        
                Disease                       attending        periodic       
                Registry                      school in the    surveys        
                (ATSDR)                       area of the                     
                                              WTC or                          
                                              working or                      
                                              present in                      
                                              the vicinity                    
                                              on September                    
                                              11, 2001                        
Project COPE NIOSH          Collaboration  New York City    o Hotline,     
                               between the    Police           mental health  
                               NYC Police     Department       counseling,    
                               Foundation and (NYPD)           and referral   
                               Columbia       uniformed and    services; some 
                               University     civilian         services       
                               Medical Center employees and    provided by    
                                              their family     Columbia       
                                              members          University     
                                                               clinical staff 
                                                               and some by    
                                                               other          
                                                               clinicians     
POPPA        NIOSH          POPPA program  NYPD             o Hotline,     
program                                    uniformed        mental health  
                                              employees        counseling,    
                                                               and referral   
                                                               services; some 
                                                               services       
                                                               provided by    
                                                               trained NYPD   
                                                               officers and   
                                                               some by mental 
                                                               health         
                                                               professionals  

Source: GAO analysis of information from NIOSH, ATSDR, FOH, FDNY, the
NY/NJ WTC Consortium, the NYC Department of Health and Mental Hygiene, the
POPPA program, and Project COPE.

Note: Some of these federally funded programs have also received funds
from the American Red Cross and other private organizations.

aIn February 2006, ASPR and NIOSH reached an agreement to have former
federal employees screened by the NY/NJ WTC Consortium.

bUntil December 26, 2006, ASPR was the administrator.

cFOH can refer an individual with mental health symptoms to an employee
assistance program for a telephone assessment. If appropriate, the
individual can then be referred to a program counselor for up to six
in-person sessions. The specialty diagnostic services are provided by ear,
nose, and throat doctors; pulmonologists; and cardiologists.

The WTC health programs that are providing screening and monitoring are
tracking thousands of individuals who were affected by the WTC disaster.
As of June 2007, the FDNY WTC program had screened about 14,500 responders
and had conducted follow-up examinations for about 13,500 of these
responders, while the NY/NJ WTC Consortium had screened about 20,000
responders and had conducted follow-up examinations for about 8,000 of
these responders. Some of the responders include nonfederal responders
residing outside the NYC metropolitan area. As of June 2007, the WTC
Federal Responder Screening Program had screened 1,305 federal responders
and referred 281 responders for employee assistance program services or
specialty diagnostic services. In addition, the WTC Health Registry, a
monitoring program that consists of periodic surveys of self-reported
health status and related studies but does not provide in-person screening
or monitoring, collected baseline health data from over 71,000 people who
enrolled in the Registry.25 In the winter of 2006, the Registry began its
first adult follow-up survey, and as of June 2007 over 36,000 individuals
had completed the follow-up survey.

In addition to providing medical examinations, FDNY's WTC program and the
NY/NJ WTC Consortium have collected information for use in scientific
research to better understand the health effects of the WTC attack and
other disasters. The WTC Health Registry is also collecting information to
assess the long-term public health consequences of the disaster.

Federal Funding and Coordination of WTC Health Programs

Beginning in October 2001 and continuing through 2003, FDNY's WTC program,
the NY/NJ WTC Consortium, the WTC Federal Responder Screening Program, and
the WTC Health Registry received federal funding to provide services to
responders. This funding primarily came from appropriations to the
Department of Homeland Security's Federal Emergency Management Agency
(FEMA),26 as part of the approximately $8.8 billion that the Congress
appropriated to FEMA for response and recovery activities after the WTC
disaster.27 FEMA entered into interagency agreements with HHS agencies to
distribute the funding to the programs. For example, FEMA entered into an
agreement with NIOSH to distribute $90 million appropriated in 2003 that
was available for monitoring.28 FEMA also entered into an agreement with
ASPR for ASPR to administer the WTC Federal Responder Screening Program. A
$75 million appropriation to CDC in fiscal year 2006 for purposes related
to the WTC attack resulted in additional funding for the monitoring
activities of the FDNY WTC program, NY/NJ WTC Consortium, and the
Registry.29 The $75 million appropriation to CDC in fiscal year 2006 also
provided funds that were awarded to the FDNY WTC program, the NY/NJ WTC
Consortium, Project COPE, and the POPPA program for treatment services for
responders. An emergency supplemental appropriation to CDC in May 2007
included an additional $50 million to carry out the same activities
provided for in the $75 million appropriation made in fiscal year 2006.30
The President's proposed fiscal year 2008 budget for HHS includes $25
million for treatment of WTC-related illnesses for responders.

25The WTC Health Registry also provides information on where participants
can seek health care.

26FEMA is the agency responsible for coordinating federal disaster
response efforts under the National Response Plan.

In February 2006, the Secretary of HHS designated the Director of NIOSH to
take the lead in ensuring that the WTC health programs are well
coordinated, and in September 2006 the Secretary established a WTC Task
Force to advise him on federal policies and funding issues related to
responders' health conditions. The chair of the task force is HHS's
Assistant Secretary for Health, and the vice chair is the Director of
NIOSH. The task force reported to the Secretary of HHS in early April
2007.

27See 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.

28Pub. L. No. 108-7, 117 Stat. 517.

29The statute required CDC, in expending such funds, to give first
priority to specified existing programs that administer baseline and
follow-up screening; clinical examinations; or long-term medical health
monitoring, analysis, or treatment for emergency services personnel or
rescue and recovery personnel. It required CDC to give secondary priority
to similar programs coordinated by other entities working with the State
of New York and NYC. Pub. L. No. 109-148, S 5011(b), 119 Stat. 2814.

30U.S. Troop Readiness, Veterans' Care, Katrina Recovery, and Iraq
Accountability Appropriations Act, 2007, Pub. L. No. 110-28, ch. 5, 121
Stat. 112, 166 (2007).

WTC Federal Responder Screening Program Has Had Difficulties Ensuring the
Availability of Screening Services, and NIOSH Was Considering Expanding the
Program to Include Monitoring

HHS's WTC Federal Responder Screening Program has had difficulties
ensuring the uninterrupted availability of services for federal
responders. First, the provision of screening examinations has been
intermittent. (See fig. 1.) After resuming screening examinations in
December 200531 and conducting them for about a year, HHS again placed the
program on hold and suspended scheduling of screening examinations for
responders from January 2007 to May 2007. This interruption in service
occurred because there was a change in the administration of the WTC
Federal Responder Screening Program, and certain interagency agreements
were not established in time to keep the program fully operational. In
late December 2006, ASPR and NIOSH signed an interagency agreement giving
NIOSH $2.1 million to administer the WTC Federal Responder Screening
Program.32 Subsequently, NIOSH and FOH needed to sign a new interagency
agreement to allow FOH to continue to be reimbursed for providing
screening examinations. It took several months for the agreement between
NIOSH and FOH to be negotiated and approved, and scheduling of screening
examinations did not resume until May 2007.33

31The program previously suspended examinations from March 2004 to
December 2005. See [20]GAO-06-481T .

32The agreement was a modification of ASPR's February 2006 interagency
agreement with NIOSH that covers screenings for former federal employees.

33Before an agreement between NIOSH and FOH could be signed, the agreement
between ASPR and NIOSH required several technical corrections. The revised
ASPR-NIOSH agreement extended the availability of funding for the WTC
Federal Responder Screening Program to April 30, 2008.

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

Note: The WTC Federal Responder Screening Program serves current federal
employees who responded to the WTC attack in an official capacity. In
February 2006, ASPR and NIOSH reached an agreement to have former federal
employees screened by the NY/NJ WTC Consortium.

aIn December 2006 the Office of Public Health and Emergency Preparedness
became ASPR. We refer to that office as ASPR throughout this figure,
regardless of the time period being discussed.

bIn providing referrals for specialty diagnostic services, FOH schedules
and pays for the diagnostic services.

cAfter HHS placed the program on hold, FOH completed examinations that had
already been scheduled.

Second, the program's provision of specialty diagnostic services has also
been intermittent. After initial screening examinations, responders often
need further diagnostic services by ear, nose, and throat doctors;
cardiologists; and pulmonologists; and FOH had been referring responders
to these specialists and paying for the services. However, the program
stopped scheduling and paying for these specialty diagnostic services in
April 2006 because the program's contract with a new provider network did
not cover these services.34 In March 2007, FOH modified its contract with
the provider network and resumed scheduling and paying for specialty
diagnostic services for federal responders.

In July 2007 we reported that NIOSH was considering expanding the WTC
Federal Responder Screening Program to include monitoring
examinations--follow-up physical and mental health examinations--and was
assessing options for funding and delivering these services. If federal
responders do not receive this type of monitoring, health conditions that
arise later may not be diagnosed and treated, and knowledge of the health
effects of the WTC disaster may be incomplete. In February 2007, NIOSH
sent a letter to FEMA, which provides the funding for the program, asking
whether the funding could be used to support monitoring in addition to the
onetime screening currently offered. A NIOSH official told us that as of
August 2007 the agency had not received a response from FEMA. NIOSH
officials told us that if FEMA did not agree to pay for monitoring of
federal responders, NIOSH would consider using other funding. According to
a NIOSH official, if FEMA or NIOSH agrees to pay for monitoring of federal
responders, this service would be provided by FOH or one of the other WTC
health programs.

34In April 2006, FOH contracted with a new provider network to provide
various services for all federal employees, such as immunizations and
vision tests. The contract with the new provider network did not cover
specialty diagnostic services by ear, nose, and throat doctors;
cardiologists; and pulmonologists. Although the previous provider network
had provided these services, the new provider network and the HHS contract
officer interpreted the statement of work in the new contract as not
including these specialty diagnostic services.

NIOSH Has Not Ensured the Availability of Services for Nonfederal Responders
Residing outside the NYC Metropolitan Area

NIOSH has not ensured the availability of screening and monitoring
services for nonfederal responders residing outside the NYC metropolitan
area, although it recently took steps toward expanding the availability of
these services. Initially, NIOSH made two efforts to provide screening and
monitoring services for these responders, the exact number of which is
unknown.35 The first effort began in late 2002 when NIOSH awarded a
contract for about $306,000 to the Mount Sinai School of Medicine to
provide screening services for nonfederal responders residing outside the
NYC metropolitan area and directed it to establish a subcontract with
AOEC.36 AOEC then subcontracted with 32 of its member clinics across the
country to provide screening services. From February 2003 to July 2004,
the 32 AOEC member clinics screened 588 nonfederal responders nationwide.
AOEC experienced challenges in providing these screening services. For
example, many nonfederal responders did not enroll in the program because
they did not live near an AOEC clinic, and the administration of the
program required substantial coordination among AOEC, AOEC member clinics,
and Mount Sinai.

Mount Sinai's subcontract with AOEC ended in July 2004, and from August
2004 until June 2005 NIOSH did not fund any organization to provide
services to nonfederal responders outside the NYC metropolitan area.37
During this period, NIOSH focused on providing screening and monitoring
services for nonfederal responders in the NYC metropolitan area. In June
2005, NIOSH began its second effort by awarding $776,000 to the Mount
Sinai School of Medicine Data and Coordination Center (DCC) to provide
both screening and monitoring services for nonfederal responders residing
outside the NYC metropolitan area. In June 2006, NIOSH awarded an
additional $788,000 to DCC to provide screening and monitoring services
for these responders. NIOSH officials told us that they assigned DCC the
task of providing screening and monitoring services to nonfederal
responders outside the NYC metropolitan area because the task was
consistent with DCC's responsibilities for the NY/NJ WTC Consortium, which
include data monitoring and coordination. DCC, however, had difficulty
establishing a network of providers that could serve nonfederal responders
residing throughout the country--ultimately contracting with only 10
clinics in seven states to provide screening and monitoring services.38
DCC officials said that as of June 2007 the 10 clinics were monitoring 180
responders.

35According to the NYC Department of Health and Mental Hygiene, about
7,000 nonfederal and federal responders residing outside the NYC
metropolitan area have enrolled in the WTC Health Registry.

36Around that time, NIOSH was providing screening services for nonfederal
responders in the NYC metropolitan area through the NY/NJ WTC Consortium
and the FDNY WTC program. Nonfederal responders residing outside the NYC
metropolitan area were able to travel at their own expense to the NYC
metropolitan area to obtain screening services through the NY/NJ WTC
Consortium.

37In early 2004, AOEC applied to NIOSH to use its national network of
member clinics to provide screening and monitoring for nonfederal
responders residing outside the NYC metropolitan area, but NIOSH rejected
AOEC's application for several reasons, including that the application did
not adequately address how to coordinate and implement a monitoring
program with complex data collection and reporting requirements.

In early 2006, NIOSH began exploring how to establish a national program
that would expand the network of providers to provide screening and
monitoring services, as well as treatment services, for nonfederal
responders residing outside the NYC metropolitan area.39 According to
NIOSH, there have been several challenges involved in expanding a network
of providers to screen and monitor nonfederal responders nationwide. These
include establishing contracts with clinics that have the occupational
health expertise to provide services nationwide, establishing patient data
transfer systems that comply with applicable privacy laws, navigating the
institutional review board40 process for a large provider network, and
establishing payment systems with clinics participating in a national
network of providers. On March 15, 2007, NIOSH issued a formal request for
information from organizations that have an interest in and the capability
of developing a national program for responders residing outside the NYC
metropolitan area.41 In this request, NIOSH described the scope of a
national program as offering screening, monitoring, and treatment services
to about 3,000 nonfederal responders through a national network of
occupational health facilities. NIOSH also specified that the program's
facilities should be located within reasonable driving distance to
responders and that participating facilities must provide copies of
examination records to DCC. In May 2007, NIOSH approved a request from DCC
to redirect about $125,000 from the June 2006 award to establish a
contract with a company to provide screening and monitoring services for
nonfederal responders residing outside the NYC metropolitan area.
Subsequently, DCC contracted with QTC Management, Inc.,42 one of the four
organizations that had responded to NIOSH's request for information. DCC's
contract with QTC does not include treatment services, and NIOSH officials
are still exploring how to provide and pay for treatment services for
nonfederal responders residing outside the NYC metropolitan area.43 QTC
has a network of providers in all 50 states and the District of Columbia
and can use internal medicine and occupational medicine doctors in its
network to provide these services. In addition, DCC and QTC have agreed
that QTC will identify and subcontract with providers outside of its
network to screen and monitor nonfederal responders who do not reside
within 25 miles of a QTC provider.44 In June 2007, NIOSH awarded $800,600
to DCC for coordinating the provision of screening and monitoring
examinations, and QTC will receive a portion of this award from DCC to
provide about 1,000 screening and monitoring examinations through May
2008. According to a NIOSH official, QTC's providers have begun conducting
screening examinations, and by the end of August 2007, 18 nonfederal
responders had completed screening examinations, and 33 others had been
scheduled.

38Contracts were originally established with 11 clinics in eight states,
but 1 clinic discontinued its participation in the program after
conducting one examination. The 10 active clinics are located in seven
states: Arkansas, California, Illinois, Maryland, Massachusetts, New York,
and Ohio. Of the 10 active clinics, 7 are AOEC member clinics.

39According to NIOSH and DCC officials, efforts to provide monitoring
services to federal responders residing outside the NYC metropolitan area
may be included in the national program.

40Institutional review boards are groups that have been formally
designated to review and monitor biomedical research involving human
subjects, such as research based on data collected from screening and
monitoring examinations.

41Department of Health and Human Services, Sources Sought Notice: National
Medical Monitoring and Treatment Program for World Trade Center (WTC)
Rescue, Recovery, and Restoration Responders and Volunteers, SSA-WTC-001
(Mar. 15, 2007).

42QTC is a private provider of government-outsourced occupational health
and disability examination services.

43Some nonfederal responders residing outside the NYC metropolitan area
may have access to privately funded treatment services. In June 2005 the
American Red Cross funded AOEC to provide treatment services for these
responders. As of June 2007, AOEC had contracted with 40 of its member
clinics located in 27 states and the District of Columbia to provide these
services. An American Red Cross official told us in September 2007 that
funding for AOEC to provide treatment services would continue through June
2008.

44As of June 2007, DCC identified 1,151 nonfederal responders residing
outside the NYC metropolitan area who requested screening and monitoring
services and were too ill or lacked financial resources to travel to NYC
or any of DCC's 10 contracted clinics.

NIOSH Awarded Funding for Treatment Services to Four WTC Health Programs

In fall 2006, NIOSH awarded and set aside funds totaling $51 million from
its $75 million appropriation for four WTC health programs in the NYC
metropolitan area to provide treatment services to responders enrolled in
these programs. Of the $51 million, NIOSH awarded about $44 million for
outpatient services to the FDNY WTC program, the NY/NJ WTC Consortium,
Project COPE, and the POPPA program. NIOSH made the largest awards to the
two programs from which almost all responders receive medical services,
the FDNY WTC program and NY/NJ WTC Consortium (see table 2). In July 2007
we reported that officials from the FDNY WTC program and the NY/NJ WTC
Consortium expected that their awards for outpatient treatment would be
spent by the end of fiscal year 2007.45,46 In addition to the $44 million
it awarded for outpatient services, NIOSH set aside about $7 million for
the FDNY WTC program and NY/NJ WTC Consortium to pay for responders'
WTC-related inpatient hospital care as needed.47

45In August 2007 a NIOSH official told us that NIOSH did not expect that
all of these funds would be spent by September 30, 2007.

46In addition to funding from NIOSH, the FDNY WTC program and the NY/NJ
WTC Consortium received funding in 2006 from the American Red Cross to
provide treatment services. In September 2007 an official from the
American Red Cross told us that it was the organization's understanding
that most of the clinics in the NY/NJ WTC Consortium had expended the
American Red Cross funds but that one of the Consortium's clinics was
expected to request a no-cost 6-month extension up to the end of calendar
year 2007. The American Red Cross had already granted a similar extension
for the same period to the FDNY WTC program.

47Of the $24 million remaining from the $75 million appropriation to CDC,
NIOSH used about $15 million to support monitoring and other WTC-related
health services conducted by the FDNY WTC program and NY/NJ WTC
Consortium. ATSDR awarded $9 million to the WTC Health Registry to
continue its collection of health data.

Table 2: NIOSH Awards to WTC Health Programs for Providing Treatment
Services, 2006

Dollars in millions                                                        
WTC health program                    Amount of awarda  Date of award      
NY/NJ WTC Consortium                             $20.8  October 26, 2006   
FDNY WTC Medical Monitoring and                   18.7  October 26, 2006   
Treatment Program                                                          
Project COPE                                      3.0b  September 19, 2006 
POPPA program                                     1.5c  September 19, 2006 
Total amount of awards                           $44.0                     

Source: NIOSH.

aAmount is rounded to the nearest $0.1 million.

bNIOSH will provide $1 million annually to Project COPE beginning in
September 2006 through September 2008, for a total award of $3 million.

cNIOSH will provide $500,000 annually to the POPPA program beginning in
September 2006 through September 2008, for a total award of $1.5 million.

The FDNY WTC program and NY/NJ WTC Consortium used their awards from NIOSH
to continue providing treatment services to responders and to expand the
scope of available treatment services. Before NIOSH made its awards for
treatment services, the treatment services provided by the two programs
were supported by funding from private philanthropies and other
organizations. According to officials of the NY/NJ WTC Consortium, this
funding was sufficient to provide only outpatient care and partial
coverage for prescription medications. The two programs used NIOSH's
awards to continue to provide outpatient services to responders, such as
treatment for gastrointestinal reflux disease, upper and lower respiratory
disorders, and mental health conditions. They also expanded the scope of
their programs by offering responders full coverage for their prescription
medications for the first time. A NIOSH official told us that some of the
commonly experienced WTC conditions, such as upper airway conditions,
gastrointestinal disorders, and mental health disorders, are frequently
treated with medications that can be costly and may be prescribed for an
extended period of time. According to an FDNY WTC program official,
prescription medications are now the largest component of the program's
treatment budget.

The FDNY WTC program and NY/NJ Consortium also expanded the scope of their
programs by paying for inpatient hospital care for the first time, using
funds from the $7 million that NIOSH had set aside for this purpose.
According to a NIOSH official, NIOSH pays for hospitalizations that have
been approved by the medical directors of the FDNY WTC program and NY/NJ
WTC Consortium through awards to the programs from the funds NIOSH set
aside for this purpose. By August 31, 2007, federal funds had been used to
support 34 hospitalizations of responders, 28 of which were referred by
the NY/NJ WTC Consortium's Mount Sinai clinic, 5 by the FDNY WTC program,
and 1 by the NY/NJ WTC Consortium's CUNY Queens College program.
Responders have received inpatient hospital care to treat, for example,
asthma, pulmonary fibrosis,48 and severe cases of depression or PTSD.
According to a NIOSH official, one responder is now a candidate for lung
transplantation and if this procedure is performed, it will be covered by
federal funds. If funds set aside for hospital care are not completely
used by the end of fiscal year 2007, he said they could be carried over
into fiscal year 2008 for this purpose or used for outpatient services.

After receiving NIOSH's funding for treatment services in fall 2006, the
NY/NJ WTC Consortium ended its efforts to obtain reimbursement from health
insurance held by responders with coverage.49 Consortium officials told us
that efforts to bill insurance companies involved a heavy administrative
burden and were frequently unsuccessful, in part because the insurance
carriers typically denied coverage for work-related health conditions on
the grounds that such conditions should be covered by state workers'
compensation programs. However, according to officials from the NY/NJ WTC
Consortium, responders trying to obtain workers' compensation coverage
routinely experienced administrative hurdles and significant delays, some
lasting several years. Moreover, according to these program officials, the
majority of responders enrolled in the program either had limited or no
health insurance coverage. According to a labor official, responders who
carried out cleanup services after the WTC attack often did not have
health insurance, and responders who were construction workers often lost
their health insurance when they became too ill to work the number of days
each quarter or year required to maintain eligibility for insurance
coverage.

48Pulmonary fibrosis is a condition characterized by the formation of scar
tissue in the lungs following the inflammation of lung tissue.

49The NY/NJ WTC Consortium now offers treatment services at no cost to
responders; however, prior to fall 2006 the program attempted when
possible to obtain reimbursement for its services from health insurance
carriers and to obtain applicable co-payments from responders.

According to a NIOSH official, although the agency had not received
authorization as of August 30, 2007, to use the $50 million emergency
supplemental appropriation made to CDC in May 2007, NIOSH was formulating
plans for use of these funds to support the WTC treatment programs in
fiscal year 2008.

Concluding Observations

Screening and monitoring the health of the people who responded to the
September 11, 2001, attack on the World Trade Center are critical for
identifying health effects already experienced by responders or those that
may emerge in the future. In addition, collecting and analyzing
information produced by screening and monitoring responders can give
health care providers information that could help them better diagnose and
treat responders and others who experience similar health effects.

While some groups of responders are eligible for screening and follow-up
physical and mental health examinations through the federally funded WTC
health programs, other groups of responders are not eligible for
comparable services or may not always find these services available.
Federal responders have been eligible only for the initial screening
examination provided through the WTC Federal Responder Screening Program.
NIOSH, the administrator of the program, has been considering expanding
the program to include monitoring but has not done so. In addition, many
responders who reside outside the NYC metropolitan area have not been able
to obtain screening and monitoring services because available services are
too distant. Moreover, HHS has repeatedly interrupted the programs it
established for federal responders and nonfederal responders outside of
NYC, resulting in periods when no services were available to them.

HHS continues to fund and coordinate the WTC health programs and has key
federal responsibility for ensuring the availability of services to
responders. HHS and its agencies have recently taken steps to move toward
providing screening and monitoring services to federal responders and to
nonfederal responders living outside of the NYC area. However, these
efforts are not complete, and the stop-and-start history of the
department's efforts to serve these groups does not provide assurance that
the latest efforts to extend screening and monitoring services to these
responders will be successful and will be sustained over time. Therefore
we recommended in July 2007 that the Secretary of HHS take expeditious
action to ensure that health screening and monitoring services are
available to all people who responded to the attack on the WTC, regardless
of who their employer was or where they reside. As of early September 2007
the department has not responded to this recommendation.

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.

Contacts and Acknowledgments

For further information about this testimony, please contact Cynthia A.
Bascetta at (202) 512-7114 or [21][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;
Hernan Bozzolo; Frederick Caison; Anne Dievler; and Roseanne Price made
key contributions to this statement.

Appendix I: Abbreviations

AOEC Association of Occupational and Environmental Clinics ASPR Office of
the Assistant Secretary for Preparedness and Response ATSDR Agency for
Toxic Substances and Disease Registry CDC Centers for Disease Control and
Prevention DCC Data and Coordination Center FDNY New York City Fire
Department FEMA Federal Emergency Management Agency FOH Federal
Occupational Health Services HHS Department of Health and Human Services
NIOSH National Institute for Occupational Safety and Health NYC New York
City NY/NJ New York/New Jersey NYPD New York City Police Department POPPA
Police Organization Providing Peer Assistance PTSD post-traumatic stress
disorder WTC World Trade Center

Related GAO Products

September 11: HHS Needs to Ensure the Availability of Health Screening and
Monitoring for All Responders. [22]GAO-07-892. Washington, D.C.: July 23,
2007.

September 11: HHS Has Screened Additional Federal Responders for World
Trade Center Health Effects, but Plans for Awarding Funds for Treatment
Are Incomplete. [23]GAO-06-1092T. Washington, D.C.: September 8, 2006.

September 11: Monitoring of World Trade Center Health Effects Has
Progressed, but Program for Federal Responders Lags Behind.
[24]GAO-06-481T. Washington, D.C.: February 28, 2006.

September 11: Monitoring of World Trade Center Health Effects Has
Progressed, but Not for Federal Responders. [25]GAO-05-1020T. Washington,
D.C.: September 10, 2005.

September 11: Health Effects in the Aftermath of the World Trade Center
Attack. [26]GAO-04-1068T. Washington, D.C.: September 8, 2004.

(290659)

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[32]www.gao.gov/cgi-bin/getrpt?GAO-07-1228T .

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Highlights of [33]GAO-07-1228T , a testimony before the Subcommittee on
Health, Committee on Energy and Commerce, House of Representatives

September 18, 2007

SEPTEMBER 11

Improvements Needed in Availability of Health Screening and Monitoring
Services for Responders

Six years after the attack on the World Trade Center (WTC), concerns
persist about health effects experienced by WTC responders and the
availability of health care services for those affected. Several federally
funded programs provide screening, monitoring, or treatment services to
responders. GAO has previously reported on the progress made and
implementation problems faced by these WTC health programs.

This testimony is based on and updates GAO's report, September 11: HHS
Needs to Ensure the Availability of Health Screening and Monitoring for
All Responders (GAO-07-892, July 23, 2007). In this testimony, GAO
discusses the status of (1) services provided by the Department of Health
and Human Services' (HHS) WTC Federal Responder Screening Program, (2)
efforts by the Centers for Disease Control and Prevention's National
Institute for Occupational Safety and Health (NIOSH) to provide services
for nonfederal responders residing outside the New York City (NYC) area,
and (3) NIOSH's awards to WTC health program grantees for treatment
services.

For the July 2007 report, GAO reviewed program documents and interviewed
HHS officials, grantees, and others. In August and September 2007, GAO
updated selected information in preparing this testimony.

In July 2007, following a re-examination of the status of the WTC health
programs, GAO recommended that the Secretary of HHS take expeditious
action to ensure that health screening and monitoring services are
available to all people who responded to the WTC attack, regardless of who
their employer was or where they reside. As of early September 2007 the
department has not responded to this recommendation.

As GAO reported in July 2007, HHS's WTC Federal Responder Screening
Program has had difficulties ensuring the uninterrupted availability of
screening services for federal responders. From January 2007 to May 2007,
the program stopped scheduling screening examinations because there was a
change in the program's administration and certain interagency agreements
were not established in time to keep the program fully operational. From
April 2006 to March 2007, the program stopped scheduling and paying for
specialty diagnostic services associated with screening. NIOSH, the
administrator of the program, has been considering expanding the program
to include monitoring, that is, follow-up physical and mental health
examinations, but has not done so. If federal responders do not receive
monitoring, health conditions that arise later may not be diagnosed and
treated, and knowledge of the health effects of the WTC disaster may be
incomplete.

NIOSH has not ensured the availability of screening and monitoring
services for nonfederal responders residing outside the NYC area, although
it recently took steps toward expanding the availability of these
services. In late 2002, NIOSH arranged for a network of occupational
health clinics to provide screening services. This effort ended in July
2004, and until June 2005 NIOSH did not fund screening or monitoring
services for nonfederal responders outside the NYC area. In June 2005,
NIOSH funded the Mount Sinai School of Medicine Data and Coordination
Center (DCC) to provide screening and monitoring services; however, DCC
had difficulty establishing a nationwide network of providers and
contracted with only 10 clinics in seven states. In 2006, NIOSH began to
explore other options for providing these services, and in May 2007 it
took steps toward expanding the provider network.

NIOSH has awarded treatment funds to four WTC health programs in the NYC
area. In fall 2006, NIOSH awarded $44 million for outpatient treatment and
set aside $7 million for hospital care. The New York/New Jersey WTC
Consortium and the New York City Fire Department WTC program, which
received the largest awards, used NIOSH's funding to continue outpatient
services, offer full coverage for prescriptions, and cover hospital care.

References

Visible links
  13. http://www.gao.gov/cgi-bin/getrpt?GAO-06-1092T
  14. http://www.gao.gov/cgi-bin/getrpt?GAO-05-1020T
  15. http://www.gao.gov/cgi-bin/getrpt?GAO-06-481T
  16. http://www.gao.gov/cgi-bin/getrpt?GAO-06-1092T
  17. http://www.gao.gov/cgi-bin/getrpt?GAO-06-1092T
  18. http://www.gao.gov/cgi-bin/getrpt?GAO-05-1020T
  19. http://dx.doi.org/10.1289/ehp.10248
  20. http://www.gao.gov/cgi-bin/getrpt?GAO-06-481T
  21. mailto:[email protected]
  22. http://www.gao.gov/cgi-bin/getrpt?GAO-05-1020T
  23. http://www.gao.gov/cgi-bin/getrpt?GAO-06-1092T
  24. http://www.gao.gov/cgi-bin/getrpt?GAO-06-481T
  25. http://www.gao.gov/cgi-bin/getrpt?GAO-05-1020T
  26. http://www.gao.gov/cgi-bin/getrpt?GAO-04-1068T
  27. http://www.gao.gov/
  28. http://www.gao.gov/
  29. http://www.gao.gov/fraudnet/fraudnet.htm
  30. mailto:[email protected]
  31. mailto:[email protected]
  32. http://www.gao.gov/cgi-bin/getrpt?GAO-07-1228T
  33. http://www.gao.gov/cgi-bin/getrpt?GAO-07-1228T
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