September 11: HHS Needs to Ensure the Availability of Health	 
Screening and Monitoring for All Responders (23-JUL-07, 	 
GAO-07-892).							 
                                                                 
Responders to the World Trade Center (WTC) attack were exposed to
many hazards, and concerns remain about long-term health effects 
of the disaster and the availability of health care services for 
those affected. In 2006, GAO reported on problems with the	 
Department of Health and Human Services' (HHS) WTC Federal	 
Responder Screening Program and on the Centers for Disease	 
Control and Prevention's (CDC) distribution of treatment funding.
GAO was asked to update its 2006 testimony. GAO assessed the	 
status of (1) services provided by the WTC Federal Responder	 
Screening Program, (2) efforts by CDC'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 grantees for treatment services  
and efforts to estimate service costs. GAO reviewed program	 
documents and interviewed HHS officials, grantees, and others.	 
-------------------------Indexing Terms------------------------- 
REPORTNUM:   GAO-07-892 					        
    ACCNO:   A73207						        
  TITLE:     September 11: HHS Needs to Ensure the Availability of    
Health Screening and Monitoring for All Responders		 
     DATE:   07/23/2007 
  SUBJECT:   Disease detection or diagnosis			 
	     Federal aid programs				 
	     Federal employees					 
	     Health care programs				 
	     Health care services				 
	     Health hazards					 
	     Interagency relations				 
	     Occupational health and safety programs		 
	     Program management 				 
	     Terrorism						 
	     HHS WTC Federal Responder Screening		 
	     Program						 
                                                                 

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GAO-07-892

   

     * [1]Results in Brief
     * [2]Background

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

     * [6]WTC Federal Responder Screening Program Has Had Difficulties
     * [7]NIOSH Has Not Ensured the Availability of Services for Nonfe

          * [8]NIOSH's Initial Efforts to Provide Screening and Monitoring
          * [9]NIOSH Has Recently Taken Steps to Establish a National Progr

     * [10]CDC's NIOSH Awarded Funding for Treatment Services to Four W

          * [11]NIOSH Awarded $44 Million in Outpatient Treatment Funding,
          * [12]NIOSH and Its Grantees Have Estimated Costs of Providing Mon
          * [13]HHS Officials Have Taken Steps to Develop More Reliable Cost

     * [14]Conclusions
     * [15]Recommendations for Executive Action
     * [16]Agency Comments and Our Evaluation
     * [17]Appendix I: Comments from the Department of Health and Human
     * [18]Appendix II: GAO Contact and Staff Acknowledgments

          * [19]GAO Contact
          * [20]Acknowledgments

               * [21]Order by Mail or Phone

Report to Congressional Requesters

United States Government Accountability Office

GAO

July 2007

SEPTEMBER 11

HHS Needs to Ensure the Availability of Health Screening and Monitoring
for All Responders

GAO-07-892

Contents

Letter 1

Results in Brief 4
Background 7
WTC Federal Responder Screening Program Has Had Difficulties Ensuring the
Availability of Screening Services and Is Not Designed to Provide
Monitoring 13
NIOSH Has Not Ensured the Availability of Services for Nonfederal
Responders Residing outside the NYC Metropolitan Area 17
CDC's NIOSH Awarded Funding for Treatment Services to Four WTC Health
Programs, but Does Not Have a Reliable Estimate of Service Costs 23
Conclusions 30
Recommendations for Executive Action 31
Agency Comments and Our Evaluation 31
Appendix I Comments from the Department of Health and Human Services 33
Appendix II GAO Contact and Staff Acknowledgments 35

Tables

Table 1: Key Federally Funded WTC Health Programs, June 2007 10
Table 2: NIOSH Awards to WTC Health Programs for Providing Treatment
Services, 2006 24

Figure

Figure 1: Timeline of Key Actions Related to the WTC Federal Responder
Screening Program 15

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
EPA Environmental Protection Agency
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

This is a work of the U.S. government and is not subject to copyright
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separately.

United States Government Accountability Office
Washington, DC 20548

July 23, 2007

The Honorable Christopher Shays
Ranking Member
Subcommittee on National Security and Foreign Affairs
Committee on Oversight and Government Reform
House of Representatives

The Honorable Vito J. Fossella
House of Representatives

The Honorable Carolyn B. Maloney
House of Representatives

Tens of thousands of people served as responders in the aftermath of the
World Trade Center (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.^1 These
responders were exposed to numerous physical hazards, environmental
toxins, and psychological trauma. More than 5 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 report as the WTC
health programs.^2,3 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. We have previously reported on the implementation of these
programs and their progress in providing services to responders,^4 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 lagged behind the other programs and accomplished
little.^5 HHS established the program in June 2003 and then suspended the
program's activities in March 2004, in part because of difficulties
identifying eligible federal responders and providing any necessary
diagnostic services related to responders' screening examinations. After
taking steps to address these concerns, HHS resumed the program in
December 2005; when we testified 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.^6 We also
reported that the National Institute for Occupational Safety and Health
(NIOSH), a component of HHS's Centers for Disease Control and Prevention
(CDC) responsible for administering most of the WTC health programs for
responders, had begun to take steps to provide access to screening,
monitoring, and treatment services for nonfederal responders who reside
outside the New York City (NYC) metropolitan area.^7

1In this report, "responders" refers to anyone involved in rescue,
recovery, or cleanup activities at or near the vicinity of the WTC or
Staten Island site, the landfill that is the off-site location of the WTC
recovery operation.

^2In this report, "screening" refers to initial physical and mental health
examinations of responders. "Monitoring" refers to tracking the health of
responders over time, either through periodic surveys or through follow-up
physical and mental health examinations.

^3One 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.

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.^8,9 This
appropriation was available to provide health care treatment for
responders, the first time an appropriation was specifically available for
this purpose. We reported that in August 2006, CDC had awarded $1.5
million to the FDNY WTC Medical Monitoring and Treatment Program from this
appropriation 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, in part because of uncertainty about the cost of
providing these services.

^4GAO, September 11: HHS Has Screened Additional Federal Responders for
World Trade Center Health Effects, but Plans for Awarding Funds for
Treatment Are Incomplete, [22]GAO-06-1092T (Washington, D.C.: Sept. 8,
2006); September 11: Monitoring of World Trade Center Health Effects Has
Progressed, but Program for Federal Responders Lags Behind,
[23]GAO-06-481T (Washington, D.C.: Feb. 28, 2006); September 11:
Monitoring of World Trade Center Health Effects Has Progressed, but Not
for Federal Responders, [24]GAO-05-1020T (Washington, D.C.: Sept. 10,
2005); and September 11: Health Effects in the Aftermath of the World
Trade Center Attack, [25]GAO-04-1068T  (Washington, D.C.: Sept. 8, 2004).

^5See [26]GAO-05-1020T and [27]GAO-06-481T .

^6See [28]GAO-06-1092T .

^7In general, the WTC health programs provide services in the NYC
metropolitan area.

You requested that we update information provided in our September 2006
testimony. Specifically, in this report we assess 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, as well as efforts to estimate the cost of serving
responders.

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)^10 and the Office of the Assistant Secretary for
Preparedness and Response (ASPR).^11 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 who
reside outside the NYC metropolitan area, including the Mount Sinai School
of Medicine 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 and efforts to
estimate the cost of serving responders, we obtained documents and
interviewed officials from NIOSH, HHS's Office of the Assistant Secretary
for Health, and HHS's Office of the Assistant Secretary for Planning and
Evaluation.^12 We also interviewed officials from two WTC health program
grantees^13 from which the majority of responders receive medical
services: the NY/NJ WTC Consortium^14 and the FDNY WTC program. In
addition, we interviewed officials from the American Red Cross, which has
funded treatment services for responders. We reviewed a 2007 report
submitted to the mayor of New York City that included an estimate of the
cost of providing health services to responders,^15 and we attended a
briefing by a NYC official who participated in compiling that estimate. To
do the work for our review, we relied 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 in
accordance with generally accepted government auditing standards.

^8Department of Defense Appropriations Act, 2006, Pub. L. No. 109-148, S
5011(b), 119 Stat. 2680, 2814 (2005).

^9See [29]GAO-06-1092T .

^10FOH 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.

^11ASPR 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
report, regardless of the time period discussed.

Results in Brief

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. After resuming screening examinations in December 2005 and
conducting them for about a year, the program again 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 a timely way to keep the
program fully operational. Second, the program's provision of specialty
diagnostic services by ear, nose, and throat doctors; cardiologists; and
pulmonologists has also been intermittent. The program did not schedule
and pay for these specialty diagnostic services from April 2006 to March
2007 because the program's contract with a new provider network did not
cover these services. A NIOSH official told us that NIOSH is considering
expanding the WTC Federal Responder Screening Program to include
monitoring examinations--follow-up physical and mental health
examinations--and is 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.

^12The Assistant Secretary for Health is chief public health advisor for
the Secretary of HHS; the Assistant Secretary for Planning and Evaluation
is the principal advisor to the Secretary on policy development and is
responsible for major activities in policy coordination, legislation
development, strategic planning, policy research, evaluation, and economic
analysis.

^13NIOSH provides funds to the programs through cooperative agreements,
but refers to award recipients as grantees. Therefore, in this report we
use the term grantee when referring to NIOSH's award recipients.

^14In previous reports we have also referred to this program as the worker
and volunteer WTC Program.

^15See World Trade Center Health Panel, Addressing the Health Impacts of
9-11: Report and Recommendations to Mayor Michael R. Bloomberg (New York:
January 2007).

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. NIOSH made two initial efforts to provide screening and
monitoring services for these responders. The first effort, in which NIOSH
arranged for AOEC to provide screening services, began in late 2002 and
ended in July 2004. From August 2004 until June 2005, NIOSH did not fund
any organization to provide services to nonfederal responders outside the
NYC metropolitan area. In June 2005, NIOSH began its second effort by
awarding funds to the Mount Sinai School of Medicine Data and Coordination
Center (DCC) to provide both screening and monitoring services. However,
DCC had difficulty establishing a network of providers that could serve
responders residing throughout the country--ultimately contracting with
only 10 clinics in 7 states. In early 2006, NIOSH began exploring how to
establish a national program that would expand the network of providers to
provide services for nonfederal responders residing outside the NYC
metropolitan area. However, these efforts are incomplete. In May 2007,
NIOSH and DCC arranged for a national network of providers to screen and
monitor nonfederal responders, and according to DCC officials, the
national network will implement a pilot program consisting of 20
examinations in summer 2007. NIOSH is still investigating how to provide
and pay for treatment services for nonfederal responders who reside
outside the NYC metropolitan area.

CDC's NIOSH awarded and set aside funds totaling $51 million from its $75
million appropriation for four WTC health programs located in the NYC
metropolitan area to provide treatment services to responders, but does
not have a reliable cost estimate of serving responders. In fall 2006,
NIOSH awarded $44 million to four programs to provide outpatient treatment
services to responders enrolled in their programs. NIOSH made the largest
outpatient treatment awards to the two WTC health programs from which
almost all responders receive medical services, the FDNY WTC program and
the NY/NJ WTC Consortium. NIOSH made smaller awards to two WTC health
programs that provide mental health services to members of the New York
City Police Department (NYPD), Project COPE and the Police Organization
Providing Peer Assistance (POPPA) program. The FDNY WTC program and NY/NJ
WTC Consortium used NIOSH's awards to continue to provide outpatient
treatment services and to expand the scope of treatment by offering full
coverage for prescription medications. NIOSH also set aside $7 million for
the FDNY WTC program and NY/NJ WTC Consortium for providing inpatient
hospital care to responders. Officials from these two programs expect that
their awards for outpatient treatment will be spent by the end of fiscal
year 2007. Efforts by NIOSH and its grantees in 2007 to estimate the cost
of monitoring and treating responders in several of the WTC programs have
not produced reliable results because the estimate included potential
costs for certain program changes that may not be implemented as well as
some costs that were mistakenly included, such as a double counting of
indirect program support costs. In addition, in the absence of actual
treatment cost data, the estimate is based in part on questionable
assumptions. For example, NIOSH and its grantees adjusted the estimate to
account for different treatment utilization levels--the complexity or
volume of care provided to responders based on their medical needs--but
NIOSH and its grantees did not have data to support the accuracy of the
specific cost adjustments they made. It is unclear whether the 2007 cost
estimate overstated or understated the annual costs of monitoring and
treating responders. To improve the reliability of future cost estimates,
HHS officials required the NY/NJ WTC Consortium and the FDNY WTC program
to begin reporting detailed cost and treatment data, which the programs
began submitting in February and March 2007, respectively.

HHS continues to fund and coordinate the WTC health programs and has key
federal responsibility for ensuring the availability of services to
responders. We are recommending 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.

In commenting on a draft of this report, HHS stated that our report was
generally an accurate and appropriate account of its activities and
accomplishments concerning health services for responders to the WTC
disaster. HHS did not comment on our recommendations.

Background

When the WTC buildings collapsed on September 11, 2001, an estimated
250,000 to 400,000 people in the vicinity were immediately exposed to a
noxious mixture of dust, debris, smoke, and potentially toxic
contaminants, such as pulverized concrete, fibrous glass, particulate
matter, and asbestos.^16 Those affected included people residing, working,
or attending school in the vicinity of the WTC and emergency responders.
In the days, weeks, and months that followed the attack, tens of thousands
of responders were involved in some capacity.^17 These responders included
personnel from many federal, state, and NYC government agencies and
private organizations, as well as volunteers.^18

Health Effects

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 buildings.^19 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.^20 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.

^16More than 20,000 residences in Lower Manhattan may have been affected
by the dust that blanketed the area. On June 20, 2007, GAO testified on
the Environmental Protection Agency's (EPA) second program to address
indoor contamination. See, GAO, World Trade Center: Preliminary
Observations on EPA's Second Program to Address Indoor Contamination,
[30]GAO-07-806T (Washington, D.C.: June 20, 2007).

^17There 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.

^18The responders included firefighters, law enforcement officers,
emergency medical technicians and paramedics, morticians, health care
professionals, construction workers, iron workers, heavy equipment
operators, mechanics, engineers, truck drivers, carpenters,
telecommunications workers, and day laborers.

^19See, 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).

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.^21 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.^22

Clinicians also anticipate that other health effects, such as
immunological disorders and cancers, may emerge over time. Clinicians at
the FDNY WTC program found an increased incidence of sarcoid-like
pulmonary disease involving inflammation of the lungs. Of 26 cases of this
sarcoid-like pulmonary disease, 13 cases were identified during the first
year after the WTC attack and 13 cases were found during the next 4
years.^23

20Banauch et al., "Pulmonary Function."

^21R. 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).

^22R. 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).

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.^24 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;^25
(3) the WTC Federal Responder Screening Program; (4) the WTC Health
Registry; (5) Project COPE; and (6) the POPPA program.^26 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. Each program uses a variety of
approaches, such as Web sites, toll-free numbers, and community forums, to
conduct outreach to eligible populations.

^23G. Izbicki et al, "World Trade Center `Sarcoid Like' Granulomatous
Pulmonary Disease in New York City Fire Department Rescue Workers," Chest,
vol. 131 (2007).

^24In 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.

^25The 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.

^26Project COPE and the POPPA program 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  
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  employees^a                     
                               consortium's                                   
                               DCC                                            
WTC Federal  NIOSH^b        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     
                                                               services^c     
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  NYPD             o Hotline,     
                               between the    uniformed and    mental health  
                               NYC Police     civilian         counseling,    
                               Foundation and employees and    and referral   
                               Columbia       their family     services; some 
                               University     members          services       
                               Medical Center                  provided by    
                                                               Columbia       
                                                               University     
                                                               clinical staff 
                                                               and some by    
                                                               other          
                                                               clinicians     
POPPA        NIOSH          POPPA          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, NY/NJ
WTC Consortium, NYC Department of Health and Mental Hygiene, 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 these 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 does not provide in-person screening or
monitoring, but consists of periodic surveys of self-reported health
status and related studies, collected baseline health data from over
71,000 people who enrolled in the registry.^27 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.
Clinicians who evaluate and treat responders to the WTC disaster 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.

^27The WTC Health Registry also provides information on where participants
can seek health care.

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),^28 as part of the approximately $8.8 billion that the Congress
appropriated to FEMA for response and recovery activities after the WTC
disaster.^29 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.^30 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.^31 The $75 million appropriation to CDC in fiscal year 2006 also
provided funds that were awarded to the FDNY WTC program, 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.^32
The President's proposed fiscal year 2008 budget for HHS includes $25
million for treatment of WTC-related illnesses for responders.

^28FEMA is the agency responsible for coordinating federal disaster
response efforts under the National Response Plan.

^29See 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.

^30Pub. L. No. 108-7, 117 Stat. 517.

^31The 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 New York City. Pub. L. No. 109-148, S5011(b), 119 Stat.
2814.

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 has two subcommittees, one examining finance issues
(cost and financing of WTC-related health programs) and the other
examining the scientific evidence on the health effects of the WTC
disaster. The task force reported to the Secretary of HHS in early April
2007.

WTC Federal Responder Screening Program Has Had Difficulties Ensuring the
Availability of Screening Services and Is Not Designed to Provide Monitoring

HHS's WTC Federal Responder Screening Program has not ensured the
uninterrupted availability of screening services for federal responders.
Since the beginning of the program, the provision of screening
examinations has been intermittent (see fig. 1). After the program resumed
screening examinations in December 2005^33 and conducted them for about a
year, HHS again placed the program on hold in January 2007. From January
to May 2007, FOH, the program's implementing agency, did not schedule
screening examinations for federal responders. 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 a timely way 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.^34 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.^35 After both agencies signed the agreement, FOH resumed
scheduling screening examinations for federal responders in May 2007. At
that time, there were 28 federal responders waiting to be scheduled for
screening examinations.

^32U.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).

^33The program previously suspended examinations from March 2004 to
December 2005. See [31]GAO-06-481T .

^34The agreement was a modification of ASPR's February 2006 interagency
agreement with NIOSH that covers screenings for former federal employees.

^35Before 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 service.

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

The WTC Federal Responder Screening Program's provision of specialty
diagnostic services has also been intermittent. The health effects
experienced by responders often result in a need for diagnostic services
by ear, nose, and throat doctors; cardiologists; and pulmonologists. When
these diagnostic services are needed after the initial screening
examination, FOH refers responders to these specialists and pays for the
services.^36 The WTC Federal Responder Screening Program stopped
scheduling and paying for these specialty diagnostic services for almost a
year, from April 2006 to March 2007. This occurred because in April 2006,
FOH contracted with a new provider network to provide various services for
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. FOH was therefore unable to pay for these services
for federal responders and stopped scheduling them in April 2006. Almost a
year later, in March 2007, FOH modified its contract with the provider
network and resumed scheduling and paying for specialty diagnostic
services for federal responders. FOH estimated that at that time, 104
responders were waiting for appointments for these services.

The WTC Federal Responder Screening Program was designed to provide a
onetime screening examination; however, NIOSH officials told us they want
to expand the program to offer monitoring examinations--that is, follow-up
physical and mental health examinations--to federal responders.^37
Clinicians involved in the monitoring of responders have noted the need
for long-term monitoring because some possible health effects, such as
cancer, may not appear until many years after a person has been exposed to
a harmful agent. NIOSH officials have said that to expand the WTC Federal
Responder Screening Program to include monitoring, NIOSH would need to
secure funding and determine who would provide the monitoring services. A
NIOSH official told us that one option for funding would be for NIOSH to
use some of the $2.1 million of the existing FEMA-ASPR funding to have the
WTC Federal Responder Screening Program include monitoring. For this to
happen, the NIOSH official said, FEMA, which originally provided the
funding to ASPR to establish the program, would have to agree to change
the scope of the program. In February 2007, NIOSH sent a letter to FEMA
asking whether the funding for the program could be provided directly to
NIOSH and whether the funding could be used to support monitoring in
addition to the onetime screening examination the program currently
offers, but as of June 2007, NIOSH had not received a response from FEMA.
NIOSH officials told us that if FEMA does not agree to this arrangement,
NIOSH will consider using other funding to pay for monitoring. According
to a NIOSH official, if NIOSH either reaches a new agreement with FEMA or
decides to pay for monitoring of federal responders by itself, NIOSH would
have to either negotiate a new agreement with FOH to provide monitoring,
which FOH officials said they would consider doing, or it would have to
make arrangements with another program, such as the NY/NJ WTC Consortium,
to provide monitoring.

^36These services are for diagnostic purposes only. FOH does not initiate
or pay for treatment.

^37Federal responders can currently obtain monitoring through the periodic
surveys of the WTC Health Registry.

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. NIOSH made two initial efforts to provide screening and
monitoring services for these responders. The first effort, in which NIOSH
arranged for AOEC to provide screening services, began in late 2002 and
ended in July 2004. From August 2004 until June 2005, NIOSH did not fund
any organization to provide services to nonfederal responders outside the
NYC metropolitan area. In June 2005, NIOSH began its second effort by
awarding funds to Mount Sinai's DCC to provide both screening and
monitoring services. However, DCC had difficulty establishing a network of
providers that could serve nonfederal responders residing throughout the
country. In early 2006, NIOSH began exploring how to establish a broader
national program that would provide screening and monitoring services, as
well as treatment, for nonfederal responders residing outside the NYC
metropolitan area. However, these efforts are incomplete. In May 2007,
NIOSH and DCC arranged for a national network of providers to screen and
monitor nonfederal responders, and a pilot program consisting of 20
examinations was scheduled to begin in summer 2007.

NIOSH's Initial Efforts to Provide Screening and Monitoring Services for
Nonfederal Responders Residing outside the NYC Area Did Not Ensure Availability
of These Services

In November 2002, NIOSH began its first effort to provide services for
nonfederal responders outside the NYC metropolitan area.^38 The exact
number of these responders is unknown.^39 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. AOEC then
subcontracted with 32 of its member clinics across the country to provide
screening services. For its part, AOEC was responsible for establishing a
network of providers nationwide through its member clinics, referring
nonfederal responders to the AOEC member clinics for screening
examinations, working with Mount Sinai to determine responders' program
enrollment eligibility, ensuring proper billing, and reimbursing its
member clinics for services. From February 2003 to July 2004, the 32 AOEC
member clinics screened 588 nonfederal responders nationwide.

An AOEC official told us AOEC experienced challenges in providing the
screening services nationwide through its member clinics. This official
said, for example, that many nonfederal responders--especially those
residing in rural areas--did not enroll in the program because they did
not live near an AOEC member clinic. In addition, the process to reimburse
AOEC member clinics for clinical examinations required substantial
coordination among AOEC, AOEC member clinics, and Mount Sinai. After a
nonfederal responder was examined by an AOEC member clinic, Mount Sinai
had to review the responder's medical records and determine that all
aspects of the examination were completed before AOEC could issue a
payment to its member clinic.

^38Around that time, NIOSH was providing screening services for nonfederal
responders in the NYC metropolitan area through the NY/NJ WTC Consortium
and FDNY's 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.

^39According 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.

From August 2004 until June 2005, NIOSH did not fund any organization to
provide screening or monitoring services outside the NYC metropolitan area
for nonfederal responders. Mount Sinai's subcontract with AOEC to provide
screening services ended in July 2004 when NIOSH was establishing
cooperative agreements to provide both screening and monitoring services
for nonfederal responders nationwide. A NIOSH official told us that from
July 2004 until June 2005, NIOSH focused on providing screening and
monitoring services for nonfederal responders in the NYC metropolitan area
because the majority of nonfederal responders reside there. NIOSH had
requested applications from organizations to provide both screening and
monitoring services for nonfederal responders and awarded funds to the
FDNY WTC program and NY/NJ WTC Consortium to provide these services in the
NYC metropolitan area. AOEC applied 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.^40 AOEC was the only organization that applied to provide
screening and monitoring services to these responders.

In June 2005, NIOSH began its second effort to provide services for
nonfederal responders residing outside the NYC metropolitan area.
Specifically, NIOSH awarded about $776,000 to DCC to coordinate the
provision of screening and monitoring services for these responders.^41
DCC spent about $387,000 of these funds on providing screening and
monitoring services for these responders. In June 2006, NIOSH awarded an
additional $788,000 to DCC to provide screening and monitoring services
for nonfederal responders residing outside the NYC metropolitan area.^42
According to a NIOSH official, DCC budgeted about $393,000 of the $788,000
for providing these services, and received approval from NIOSH to redirect
the remaining amount ($395,000) for other purposes. 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 7 states to provide screening and
monitoring services.^43 DCC officials said that as of June 2007, the 10
clinics were monitoring 180 responders.

^40According to a NIOSH official, AOEC's application did not adequately
address how to coordinate and implement a monitoring program with complex
data collection and reporting requirements. In addition, NIOSH officials
identified other reasons the application was rejected by reviewers,
including the fact that the application lacked an overall statement of
programmatic goals or specific aims, the administrative and clinical
evaluation plans described in the application were too vague, and the
proposed leadership for the program did not include trained mental health
professionals.

^41DCC received this amount as a part of its award continuation for DCC's
second year of funding. DCC's second year award continuation totaled about
$3,778,000 and was for its role as coordinator for the NY/NJ WTC
Consortium. The award continuation was used to pay for all data
management, data analysis, and program coordination activities performed
from June 2005 through May 2006.

According to a NIOSH official, there have been several challenges involved
in establishing 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 board^44
process for a large provider network, and establishing payment systems
with clinics participating in a national network of providers.

^42DCC received this amount as a part of its award continuation for DCC's
third year of funding. DCC's third year award continuation totaled about
$3,924,000 and was for its role as coordinator for the NY/NJ WTC
Consortium. The award continuation was used to pay for all data
management, data analysis, and program coordination activities performed
from June 2006 through May 2007.

^43Contracts were originally established with 11 clinics in 8 states, but
1 clinic discontinued its participation in the program after conducting
one examination. The 10 active clinics are located in Arkansas,
California, Illinois, Maryland, Massachusetts, New York, and Ohio. Of the
10 active clinics, 7 are AOEC member clinics.

^44Institutional 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.

NIOSH Has Recently Taken Steps to Establish a National Program for Nonfederal
Responders to Provide Screening, Monitoring, and Treatment Services, but Its
Efforts Are Incomplete

Since 2006, NIOSH has been exploring how to establish a national program
that would expand the availability of screening and monitoring services,
as well as provide treatment services, to nonfederal responders residing
outside the NYC metropolitan area.^45 NIOSH officials have indicated that
they would like to expand the availability of screening and monitoring
services by establishing a network of providers with locations convenient
to all nonfederal responders. NIOSH officials have also indicated that
they would like to offer the same set of services to these responders that
is offered to nonfederal responders in the NYC metropolitan
area--screening, monitoring, and treatment services. NIOSH has considered
different approaches for this national program. For example, in early
2006, NIOSH officials considered funding AOEC and its network of 50 member
clinics to administer a national program and instructed DCC to discontinue
efforts to establish new contracts with clinics nationwide. However, in
February 2007, NIOSH officials decided that AOEC would not administer the
national program.^46 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.^47 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 took steps toward establishing the national program,
but its efforts are incomplete. 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.,^48 one of the four organizations
that had responded to NIOSH's request for information. QTC has a network
of providers located across all 50 states and the District of Columbia and
will use internal medicine and occupational medicine doctors in its
network to provide these services. In addition, QTC will identify and
subcontract with providers outside of the QTC network to screen and
monitor nonfederal responders who do not reside within 25 miles of a QTC
provider.^49 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.^50 According to DCC
officials, they are working with QTC to establish examination protocols
and administrative systems needed to begin conducting screening and
monitoring examinations, and they will begin a pilot program consisting of
20 examinations in summer 2007. 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.^51

^45According 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.

^46A NIOSH official told us that an AOEC network of 50 member clinics
would not be sufficient by itself to provide the three services to
nonfederal responders nationwide.

^47Department 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).

^48QTC is a private provider of government-outsourced occupational health
and disability examination services.

^49As of June 2007, DCC identified 1,151 nonfederal responders residing
outside the NYC metropolitan area who requested screening and monitoring
services but were too ill or lacked financial resources to travel to NYC
or any of DCC's 10 contracted clinics.

^50In addition to this award, according to a NIOSH official, NIOSH
approved DCC's request to use the funds remaining from the June 2005
award, about $389,000, to provide screening and monitoring services to
nonfederal responders residing outside the NYC metropolitan area.
Therefore, as of June 2007, a total of $1,189,600 is available for this
purpose. In addition, when NIOSH receives DCC's financial status report in
summer 2007, it will decide if any unused funds from the June 2006 award
will be made available to DCC for providing these services.

^51Some 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. The initial grant from the American Red Cross will be expended
by June 30, 2007, but American Red Cross officials told us that funding
may be provided into 2008.

CDC's NIOSH Awarded Funding for Treatment Services to Four WTC Health Programs,
but Does Not Have a Reliable Estimate of Service Costs

In fall 2006, CDC's NIOSH awarded $44 million to four programs in the NYC
metropolitan area for providing outpatient treatment services to
responders. Officials from the FDNY WTC program and NY/NJ WTC Consortium
used some of the funds to provide full coverage for prescription
medications. NIOSH also set aside $7 million for the FDNY WTC program and
NY/NJ WTC Consortium to provide inpatient hospital care. Officials from
these programs expect that the funds they received from NIOSH for
outpatient services will be spent by the end of fiscal year 2007. NIOSH
has worked with two of its grantees to estimate the cost of monitoring and
treating responders; however, the most recent effort, in 2007, has not
produced reliable results because the estimate included potential costs
for certain program changes that may not be implemented as well as some
costs that reduced the estimate's accuracy. In addition, in the absence of
actual treatment cost data, the estimate was based in part on questionable
assumptions. To improve the reliability of future cost estimates, HHS
officials have required some of the WTC health programs to report detailed
cost and treatment data.

NIOSH Awarded $44 Million in Outpatient Treatment Funding, Which Is Expected to
Be Spent by End of Fiscal Year 2007, and Set Aside $7 Million for Hospital Care

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.^52 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). Officials
from the FDNY WTC program and NY/NJ WTC Consortium expect funds they
received from NIOSH for outpatient treatment services to be expended by
the end of fiscal year 2007.^53 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.^54

^52Federal responders are not eligible for services through these four
programs.

^53In addition to funding from NIOSH, the FDNY WTC program and NY/NJ WTC
Consortium received funding in 2006 from the American Red Cross to provide
treatment services. Officials from the American Red Cross expected that
the funds it provided would be expended by June 30, 2007, except for the
Mount Sinai Clinical Center's funding, which is expected to be expended by
July 31, 2007. American Red Cross officials told us that their
organization is ending its support of the two health programs and does not
plan to renew treatment funding.

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

                                    Amount of award^a (in                     
WTC health program                           millions)  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                                     3.0^b  September 19, 2006 
POPPA program                                    1.5^c  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.

^54Of 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.

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. As of June 1, 2007, there were 15 hospitalizations
of responders, 13 of whom were referred by the NY/NJ WTC Consortium's
Mount Sinai clinic and 2 by the FDNY WTC program. Responders have received
inpatient hospital care to treat, for example, asthma, pulmonary
fibrosis,^55 and severe cases of depression or PTSD. If not completely
used by the end of fiscal year 2007, funds set aside for hospital care
could be 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.^56 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.

^55Pulmonary fibrosis is a condition characterized by the formation of
scar tissue in the lungs following the inflammation of lung tissue.

^56The 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.

NIOSH and Its Grantees Have Estimated Costs of Providing Monitoring and
Treatment Services, but These Efforts Have Not Produced a Reliable Estimate

NIOSH has worked with two of its grantees--the FDNY WTC program and NY/NJ
WTC Consortium--to estimate the annual cost of monitoring and treating
responders. In December 2006, the agency and its grantees estimated that
the annual cost of monitoring and treating responders enrolled in the FDNY
WTC program and NY/NJ WTC Consortium, including associated program
costs,^57 was about $257 million. In January 2007, NIOSH revised the
estimate to also include the cost of monitoring and treating responders
enrolled in the WTC Federal Responder Screening Program and nonfederal
responders residing outside the NYC metropolitan area who participate in
the WTC health programs. The estimate did not include the cost of
providing mental health treatment services through Project COPE and the
POPPA program.^58 The January 2007 estimate projected that aggregate
annual costs for providing monitoring and treatment services, along with
associated program expenses, could be approximately $230 million or $283
million, depending on the number of responders who receive treatment
services.^59

To develop an estimate of outpatient treatment costs, which are generally
higher than monitoring costs, NIOSH and its grantees projected the
incidence of WTC-related health conditions among responders and the number
of responders who would likely obtain treatment. Based on this number,
they projected that in a given year,

^57Associated program costs include expenses for data analysis and program
administration.

^58The estimate also did not include the cost of providing baseline
medical screenings.

^59NIOSH and its grantees estimated that monitoring and treatment costs
could be about $230 million annually if 75 percent of the responders
projected to need medical treatment in a given year received such services
and that these costs could be about $283 million annually if 100 percent
of the responders projected to need medical treatment in a given year
received such services. To estimate the annual cost of monitoring, NIOSH
and its grantees estimated that the cost of examining a responder not
receiving medical treatment from a WTC health program would be $1,500 and
the cost for a responder receiving treatment would be $500. (NIOSH
officials explained that the cost of conducting a monitoring examination
is lower for a responder who is receiving care on a regular basis because
some diagnostic procedures needed for monitoring will have already been
performed.) The January 2007 estimate projected that annual monitoring
costs would account for about $35.7 million of its $230 million estimate
and for about $30.7 million of its $283 million estimate.

           o 25 to 30 percent of participating responders will have
           aerodigestive (combined pulmonary and gastrointestinal) disorders
           that require treatment,

           o 25 to 35 percent of participating responders will have mental
           health disorders that require treatment, and

           o 1 to 4 percent of participating responders will have
           musculoskeletal disorders that require treatment.

           To estimate treatment costs for these conditions, NIOSH and its
           grantees multiplied the estimated per patient cost of providing
           outpatient services by the number of responders projected to need
           these services in a given year. They did not have actual cost data
           on these services because the WTC health programs had not been
           required to report such data when private organizations were
           funding the programs' treatment services. In the absence of actual
           cost data, NIOSH and its grantees relied on workers' compensation
           reimbursement rates for specific services^60 as a proxy for
           outpatient treatment costs. They adjusted the proxy rates to
           reflect different treatment utilization^61 levels--routine,
           moderate, or extensive outpatient care--and used their best
           judgment, based on experience, for the distribution of responders
           into the three treatment utilization levels. Specifically, they
           used the proxy rates to represent moderate utilization, reduced
           the proxy rates by one-third to represent routine utilization, and
           increased the proxy rates by one-third to represent extensive
           outpatient care. Outpatient treatment costs were further adjusted
           to account for the differences in treatment protocols and
           medication costs at the FDNY WTC program and NY/NJ WTC
           Consortium.^62 After estimating the cost of providing outpatient
           services, NIOSH and its grantees estimated other treatment-related
           expenses--inpatient care, medical monitoring, indirect costs,^63
           language translation, data analysis, and expenses incurred by
           NIOSH such as for travel and telephone service. They added these
           estimated expenses to the estimate for outpatient services to
           arrive at a total annual cost amount.

^60NIOSH and its grantees used New York State workers' compensation
reimbursement rates.

^61Treatment utilization is the volume or complexity of care provided to
patients based on their medical needs.

^62NIOSH and its grantees assumed that other providers' treatment costs
would be equivalent to those of the NY/NJ WTC Consortium.

^63Indirect costs are for functions that indirectly support a program,
such as administrative activities, utilities, and building maintenance.

           Several factors reduced the reliability of the January 2007
           estimate. It is unclear whether the overall estimate overstated or
           understated the costs of monitoring and treating responders.
           First, the estimate included potential costs that reflect certain
           program changes that may not be implemented. For example, when
           NIOSH and its grantees projected the cost of medically monitoring
           responders, the estimate assumed a more frequent monitoring
           interval, which has been discussed by program officials but has
           not been adopted.^64 Similarly, they included costs for providing
           monitoring and treatment services to federal responders, who are
           not now eligible for such services.

           Second, NIOSH mistakenly included certain costs in the estimate.
           According to NIOSH officials, the estimate included a calculation
           for indirect costs associated with monitoring and treating
           responders. However, NIOSH officials later learned that the
           workers' compensation reimbursement rates that were used as a
           proxy for outpatient treatment costs already contained an
           adjustment for indirect costs. As a result, total indirect costs
           were overstated. In addition, the estimate included the cost of
           monitoring services provided by the FDNY WTC program and NY/NJ WTC
           Consortium without taking into account that these services were
           already funded through mid-2009 by other NIOSH funds.

           Finally, in the absence of actual data on the cost of providing
           treatment services, the estimate was based in part on two
           questionable assumptions. First, when NIOSH and its grantees used
           the assumption that adjusting the proxy rates up or down by
           one-third would account for the differences in treatment
           utilization levels, there were no data to support the accuracy of
           such adjustments. As a result, it is unclear whether the
           projections of treatment costs have resulted in an overestimate or
           underestimate of treatment costs. Second, the assumption used to
           estimate the cost of medical monitoring was not consistent with
           the historical participation rates reported by the NY/NJ WTC
           Consortium. NIOSH and its grantees based the estimate on the
           assumption that every responder would keep his or her appointment
           for periodic medical monitoring. However, NY/NJ WTC Consortium
           officials told us that the rate at which responders have kept
           scheduled appointments is 50 to 60 percent.^65

^64The WTC medical monitoring protocol calls for an in-office assessment
of a responder's physical and mental health every 18 months; the estimate
assumes that these visits occur every 12 months. NIOSH officials told us
that they assumed a 12-month interval because that is what clinicians
prefer for optimal identification and treatment of illnesses.

           HHS Officials Have Taken Steps to Develop More Reliable Cost Estimates

           To improve the reliability of future efforts to estimate the cost
           of providing services to responders, NIOSH officials and the
           Assistant Secretary for Health--in his capacity as chairman of the
           HHS WTC Task Force--have required the FDNY WTC program and NY/NJ
           WTC Consortium to report detailed demographic, service
           utilization, and cost information. The information requested from
           each program includes

           o the number of responders monitored and treated,

           o diagnoses of responders monitored and treated,

           o medical services provided and the cost of those services, and

           o responders' occupations and insurance coverage status.

           These data are to be reported on a quarterly basis, and the first
           reports were received from the NY/NJ WTC Consortium in late
           February 2007 and from the FDNY WTC program in March 2007. These
           reports included data covering 2 quarters--July through September
           2006, when treatment funding was provided by the American Red
           Cross, and October through December 2006, when treatment funding
           was provided by NIOSH and the American Red Cross.^66

           According to an HHS official who is a member of the HHS WTC Task
           Force, some of the cost reports submitted in February and March
           were incomplete and therefore did not provide sufficient
           information to support a reliable estimate of the annual cost of
           medical services provided by the WTC health programs. For example,
           some clinical centers submitted expense reports for only 1 quarter
           instead of 2. Furthermore, a NIOSH official told us that some of
           the data that were compiled manually were not accurate. According
           to the task force member, HHS will need at least 4 quarters of
           complete and accurate data before it can make reliable estimates.
           This would mean that HHS may not have data needed to develop a
           reliable estimate of costs until October 2008. NIOSH officials
           told us, however, that as they, the FDNY WTC program, and the
           NY/NJ WTC Consortium gain experience and as report data are
           automated, the quality of the data they develop and the
           reliability of cost estimates will improve.
			  
^65In an effort separate from the estimation effort of NIOSH and its
grantees, an NYC mayoral panel that reviewed WTC health effects issued a
report in February 2007 that contained an estimate of the cost to provide
medical services through the FDNY WTC and the NY/NJ WTC Consortium
programs. This effort resulted in a lower estimate of the cost of
providing medical services through these two programs--approximately $107
million in fiscal year 2008. The NYC effort was affected by some of the
same factors that limited the reliability of the estimate of NIOSH and the
grantees, such as the lack of actual treatment cost data. See World Trade
Center Health Panel, Addressing the Health Impacts of 9-11: Report and
Recommendations to Mayor Michael R. Bloomberg.

^66These data were not available when NIOSH and its grantees made their
estimate of WTC costs in January 2007.	

           Conclusions		  

           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 are eligible only for
           the initial screening examination provided through the WTC Federal
           Responder Screening Program and are not eligible for federally
           funded follow-up monitoring examinations. In addition, many
           responders who reside outside of 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, it is
           important for HHS to make a concerted effort, without further
           delay, to ensure that health screening and monitoring services are
           available to all people who responded to the attack on the World
           Trade Center, regardless of who their employer is or where they
           reside.
			  
			  Recommendations for Executive Action

           To ensure that comparable screening and monitoring services are
           available to all responders, we are recommending that the
           Secretary of HHS expeditiously take two actions: (1) ensure that
           screening and monitoring services are available for federal
           responders and (2) ensure that screening and monitoring services
           are available for nonfederal responders residing outside of the
           NYC metropolitan area.
			  
			  Agency Comments and Our Evaluation

           HHS reviewed a draft of this report and provided comments, which
           are reprinted in appendix I. HHS also provided technical comments,
           which we incorporated as appropriate.

           HHS commented that overall, our report is an accurate and
           appropriate account of its activities and accomplishments
           concerning health services for responders to the WTC disaster.
           However, HHS stated that an inaccurate understanding of our
           findings would likely result if a reader read only the summary
           information about the WTC Federal Responder Screening Program and
           services for nonfederal responders residing outside the NYC area
           in the Highlights and Results in Brief. Where appropriate, we
           revised the language in the Highlights and Results in Brief to be
           consistent with the findings in our report. HHS also stated that
           our description of the services available to nonfederal responders
           residing outside the NYC metropolitan area did not acknowledge
           that over 60 percent of these responders have been examined by the
           DCC network or by AOEC. However, because the total number of
           nonfederal responders residing outside the NYC metropolitan area
           is unknown, we believe it is not possible to determine what
           percentage of these responders has been examined.

           In its comments, HHS raised concerns about our use of the terms
           HHS, CDC, and NIOSH with respect to their role in particular
           activities. We modified the report where appropriate to clarify
           respective agency responsibilities. Finally, HHS acknowledged that
           the estimate of the costs of monitoring and treating WTC
           responders was imprecise. HHS also noted, as we have reported,
           that the clinical centers of the NY/NJ WTC Consortium and the FDNY
           WTC program have begun submitting quarterly cost and treatment
           reports and that this information will be used to improve cost
           estimates. We believe this is an important step toward the
           development of a reliable estimate.

           HHS did not comment on our recommendations.

           As agreed with your offices, unless you publicly announce its
           contents earlier, we plan no further distribution of this report
           until 30 days after its issue date. At that time we will send
           copies of this report to the Secretary of Health and Human
           Services, congressional committees, and other interested parties.
           We will also make copies available to others upon request. In
           addition, the report will be available at no charge on the GAO Web
           site at [32]http://www.gao.gov .

           If you or your staffs have any questions about this report, please
           contact me at (202) 512-7114 or [33][email protected] . Contact
           points for our Offices of Congressional Relations and Public
           Affairs may be found on the last page of this report. GAO staff
           who made major contributions to this report are listed in appendix
           II.

           Cynthia Bascetta
			  Director, Health Care
			  
  			  Appendix I: Comments from the Department of Health and Human Services
			  
			  Appendix II: GAO Contact and Staff Acknowledgments
			  
			  GAO Contact

           Cynthia A. Bascetta, (202) 512-7114 or [34][email protected]
			  
			  Acknowledgments
			  
           In addition to the contact named above, Helene F. Toiv, Assistant
           Director; George Bogart; Hernan Bozzolo; Frederick Caison; Anne
           Dievler; and Krister Friday made key contributions to this report.
			  
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[41]www.gao.gov/cgi-bin/getrpt?GAO-07-892 .

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Highlights of [42]GAO-07-892 , a report to congressional requesters

July 2007

SEPTEMBER 11

HHS Needs to Ensure the Availability of Health Screening and Monitoring
for All Responders

Responders to the World Trade Center (WTC) attack were exposed to many
hazards, and concerns remain about long-term health effects of the
disaster and the availability of health care services for those affected.
In 2006, GAO reported on problems with the Department of Health and Human
Services' (HHS) WTC Federal Responder Screening Program and on the Centers
for Disease Control and Prevention's (CDC) distribution of treatment
funding.

GAO was asked to update its 2006 testimony. GAO assessed the status of (1)
services provided by the WTC Federal Responder Screening Program, (2)
efforts by CDC'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 grantees for treatment
services and efforts to estimate service costs. GAO reviewed program
documents and interviewed HHS officials, grantees, and others.

[43]What GAO Recommends

GAO recommends that the Secretary of HHS expeditiously ensure that
screening and monitoring services are available for (1) federal responders
and (2) nonfederal responders residing outside the NYC area. In its
comments on a draft of GAO's report, HHS said that the report was
generally accurate. HHS did not comment on GAO's recommendations.

HHS's WTC Federal Responder Screening Program has had difficulties
ensuring the uninterrupted availability of services for federal
responders. From January 2007 to May 2007, the program stopped scheduling
screening examinations because there was a change in the administration of
the WTC Federal Responder Screening Program, and certain interagency
agreements were not established in a timely way to keep the program fully
operational. In April 2006 the program also stopped scheduling and paying
for specialty diagnostic services because a contract with the program's
new provider network did not cover these services. Almost a year later,
the contract was modified, and the program resumed scheduling and paying
for these services in March 2007. NIOSH is considering expanding the WTC
Federal Responder Screening Program to include monitoring--follow-up
physical and mental health examinations--and is assessing options for
funding and service delivery. 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 7 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. However, these efforts
are incomplete.

NIOSH has awarded treatment funds to four NYC-area programs, but does not
have a reliable cost estimate of serving responders. 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. Program officials expect that
NIOSH's outpatient treatment awards will be spent by the end of fiscal
year 2007. NIOSH lacks a reliable estimate of service costs because the
estimate that NIOSH and its grantees developed included potential costs
for certain program changes that may not be implemented, and in the
absence of actual treatment cost data, they relied on questionable
assumptions. It is unclear whether the estimate overstates or understates
the cost of serving responders. To improve future cost estimates, HHS
officials have required the two largest grantees to report detailed cost
data.

References

Visible links
  22. http://www.gao.gov/cgi-bin/getrpt?GAO-06-1092T
  23. http://www.gao.gov/cgi-bin/getrpt?GAO-06-481T
  24. http://www.gao.gov/cgi-bin/getrpt?GAO-05-1020T
  25. http://www.gao.gov/cgi-bin/getrpt?GAO-04-1068T
  26. http://www.gao.gov/cgi-bin/getrpt?GAO-05-1020T
  27. http://www.gao.gov/cgi-bin/getrpt?GAO-06-481T
  28. http://www.gao.gov/cgi-bin/getrpt?GAO-06-1092T
  29. http://www.gao.gov/cgi-bin/getrpt?GAO-06-1092T
  30. http://www.gao.gov/cgi-bin/getrpt?GAO-07-806T
  31. http://www.gao.gov/cgi-bin/getrpt?GAO-06-481T
  32. http://www.gao.gov/
  33. mailto:[email protected]
  34. mailto:[email protected]
  35. http://www.gao.gov/
  36. http://www.gao.gov/
  37. http://www.gao.gov/fraudnet/fraudnet.htm
  38. mailto:[email protected]
  39. mailto:[email protected]
  40. mailto:[email protected]
  41. http://www.gao.gov/cgi-bin/getrpt?GAO-07-892
  42. http://www.gao.gov/cgi-bin/getrpt?GAO-07-892
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