United States Government Accountability Office

GAO Report to Congressional Requesters

SEPTEMBER 11 

HHS Needs to Develop 

a Plan That 

Incorporates Lessons 

from the Responder 

Health Programs 

May 2008 

 

GAO-08-610 
What GAO Found

United States Government Accountability Office

Why GAO Did This Study

Highlights

Accountability Integrity Reliability

May 2008

SEPTEMBER 11

HHS Needs to Develop a Plan That Incorporates

Lessons from the Responder Health Programs

Highlights of GAO-08-610, a report to 

congressional requesters 

Following the World Trade Center

(WTC) attack, the Congress

appropriated more than $8 billion 

to the Department of Homeland

Security’s (DHS) Federal 

Emergency Management Agency

for response and recovery

activities. The Department of 

Health and Human Services (HHS)

received some of this funding to

establish health screening and 

monitoring programs for

responders to the disaster and later 

received additional appropriations

to fund treatment. In total, about 

$369.2 million has been 

appropriated or awarded for the 

WTC health programs. GAO 

previously reported on problems 

that these programs have had in

ensuring the availability of services 

for all responders. 

GAO was asked to examine lessons 

from the WTC health programs that 

could guide future programs. GAO 

examined (1) lessons from the 

programs’ experience and (2) HHS 

actions or plans that incorporate 

the lessons. GAO interviewed WTC

health program officials and other 

experts and reviewed DHS and

HHS documents. 

What GAO Recommends

GAO recommends that the 

Secretary of HHS develop a 

department-level plan for 

responder screening and 

monitoring services that defines

the roles of HHS components and 

incorporates the lessons from the 

WTC health programs. In its 

comments on a draft of GAO’s 

report, HHS did not comment on 

GAO’s recommendation. 

GAO identified five important lessons from the experience of the WTC health 

programs that could help with the development of responder health programs 

in the event of a future disaster. First, registering all responders during a 

response to a disaster could improve implementation of screening and 

monitoring services. Second, designing and implementing screening and 

monitoring programs that foster the ability to conduct epidemiologic research 

could improve the understanding of health effects experienced by responders 

and help determine the need for ongoing monitoring. Third, providing timely 

mental health screening and monitoring that is integrated with physical health 

screening and monitoring could improve the ability to accurately diagnose 

physical and mental health conditions and prevent more serious mental health 

conditions from developing. Fourth, including a treatment referral process in 

screening and monitoring programs could improve the ability of responders to 

gain access to needed treatment. Fifth, making comparable services available 

to all responders, regardless of their employer or geographic location, could 

ensure more equitable access to services for responders and help ensure that

data collected about responders’ health are consistent and comprehensive. 

HHS has taken steps to facilitate responder registration, but has not 

developed a department-level plan for responder health programs. HHS’s 

Agency for Toxic Substances and Disease Registry has developed a survey 

instrument that state and local entities can adopt to register responders and 

other individuals exposed to a disaster. In a separate effort, HHS’s Office of 

the Assistant Secretary for Preparedness and Response is taking steps to 

establish a system to register HHS employees and other federal public health 

and medical personnel who are deployed to a disaster, but it has not 

completed this effort. HHS has not developed a department-level plan for 

designing and implementing responder health programs that incorporates the 

five lessons from the WTC health programs. As a result, HHS has not indicated 

whether its policies and actions following a disaster or emergency would 

apply these lessons. Another consequence of not having a plan is that HHS has 

not described its components’ roles and responsibilities for designing and 

implementing responder health programs. It has not identified which HHS 

components would be involved in responder health programs, which 

component would take the lead, how the expertise of various components 

would be used, or how efforts would be coordinated. In the absence of a 

department-level plan, HHS’s National Institute for Occupational Safety and 

Health developed a proposal in February 2008 for a project to develop 

strategies to ensure responder safety and health. While GAO concluded that 

this proposal is a step in the right direction for addressing responder health 

issues, it noted that the proposal does not fully address the lessons that have 

been identified from the WTC health programs. 

To view the full product, including the scope 

and methodology, click on GAO-08-610. 

For more information, contact Cynthia A. 

Bascetta at (202) 512-7114 or 

bascettac@gao.gov. 
Contents 

Letter 1

Results in Brief 4

Background 5

Five Important Lessons Can Be Drawn from the Experience of the 

WTC Health Programs 13 

HHS Has Taken Steps to Facilitate Responder Registration, but Has 

Not Developed a Plan for Responder Health Programs 21 

Conclusions 24

Recommendation for Executive Action 24 

Agency Comments and Our Evaluation 25 

Appendix I Key Federally Funded WTC Health Programs, 

May 2008 27 

Appendix II Comments from the Department of Health and 

Human Services 28 

Appendix III GAO Contact and Staff Acknowledgments 31 

Related GAO Products 32 

Table 

Table 1: Services Provided to Responders through WTC Health 

Programs as of December 31, 2007 8 

Page i GAO-08-610 Lessons from Responder Health Programs
Abbreviations 

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 

DHS Department of Homeland Security 

ESF#8 Emergency Support Function #8 

FDNY New York City Fire Department 

FEMA Federal Emergency Management Agency 

FOH Federal Occupational Health Services 

HHS Department of Health and Human Services 

NDMS National Disaster Medical System 

NIEHS National Institute of Environmental Health Sciences 

NIMH National Institute of Mental Health 

NIOSH National Institute for Occupational Safety and Health 

NRF National Response Framework 

NRP National Response Plan 

NYC New York City 

NY/NJ New York/New Jersey 

OSHA Occupational Safety and Health Administration 

POPPA Police Organization Providing Peer Assistance 

PTSD post-traumatic stress disorder 

RRR Rapid Response Registry 

RTI Research Triangle Institute International 

WTC World Trade Center 

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

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without further permission from GAO. However, because this work may contain 

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Page ii GAO-08-610 Lessons from Responder Health Programs
United States Government Accountability Office

Washington, DC 20548 

May 30, 2008

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 

Following the September 11, 2001, attack on the World Trade Center 

(WTC), the Congress appropriated more than $8 billion to the Department 

of Homeland Security’s (DHS) Federal Emergency Management Agency

(FEMA) for response and recovery activities.1

 As part of this assistance, 

the Department of Health and Human Services (HHS)—the lead federal 

agency for public health and medical disaster preparedness and response 

activities under the National Response Framework (NRF)2—received 

funding to establish programs in collaboration with local government and 

private organizations to address health concerns related to the WTC 

disaster. In October 2001, HHS began funding programs to screen and 

monitor the health of tens of thousands of WTC responders,3

 who were 

exposed to numerous physical hazards, environmental toxins, and 

psychological trauma as a result of their work. HHS also provided funds to

the New York City (NYC) Department of Health and Mental Hygiene in 

July 2002 to establish the WTC Health Registry to monitor for self-reported 

health problems among responders, as well as among people who were 

 1

Response activities address the immediate and short-term effects of an emergency or 

disaster. Recovery activities address long-term impacts of an emergency or disaster. 

2

The NRF establishes a framework of how the federal government coordinates with state, 

local, and tribal governments and the private sector during an emergency or disaster. 

3

In this report, “responders” refers to anyone involved in rescue, recovery, or cleanup

activities at or near the vicinity of the WTC or the Staten Island site, the landfill that is the 

off-site location of the WTC recovery operation. Responders included New York City Fire

Department personnel, federal government personnel, and other government and privatesector workers and volunteers from New York and elsewhere. 

Page 1 GAO-08-610 Lessons from Responder Health Programs
living or attending school in the area of the WTC or were working or 

present in the vicinity on September 11, 2001. In fiscal year 2006 the 

Congress first appropriated funds that were specifically available for 

treatment programs for certain responders with health conditions related 

to the WTC disaster. 

We have previously reported on the implementation of the federally 

funded WTC responder health programs—referred to in this report as the 

WTC health programs4

—and their progress in providing services to 

responders.5

 In the course of this previous work, we found that HHS had 

problems ensuring the availability of screening and monitoring services for 

all responders.6

 However, in designing, administering, and implementing 

these services, officials from HHS and the WTC health programs gained 

valuable experience that could guide future federal efforts to develop 

programs for responders following a disaster or emergency that 

overwhelms state and local response capabilities.

As part of its responsibilities as the lead federal agency for public health 

disaster preparedness and response, HHS is directed by the NRF to 

develop policies and plans governing how it would provide resources to 

carry out its role. In the years since the WTC disaster, HHS has taken some 

steps to prepare for disasters and other public health emergencies, 

including participating in planning activities with DHS and other federal 

agencies, conducting research, developing a strategic plan and other 

initiatives, and providing grants and technical assistance to states7 and 

localities to support their efforts to prepare for disasters and public health

emergencies. 

You requested that we determine what lessons have been learned from the 

WTC health programs that could help with the development of responder 

health programs in the event of a future disaster. Specifically, in this report 

we (1) identify lessons from the experience of the WTC health programs 

 4

See appendix I for a description of the key federally funded WTC health programs. 

5

A list of related GAO products is provided at the end of this report. 

6

In 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. 

7

In this report, the term state includes the District of Columbia and the territories. 

Page 2 GAO-08-610 Lessons from Responder Health Programs
and (2) determine whether HHS has taken actions or developed plans that 

incorporate the lessons from the WTC health programs. 

To identify lessons from the experience of the WTC health programs, we 

reviewed our previous work on the WTC health programs and interviewed 

individuals who are experts in this area. Those experts included officials

from the HHS components involved in administering and implementing the 

programs: the Office of the Assistant Secretary for Preparedness and 

Response (ASPR),8

 the Centers for Disease Control and Prevention’s 

(CDC) National Institute for Occupational Safety and Health (NIOSH),9

 the 

Agency for Toxic Substances and Disease Registry (ATSDR),10 and the 

Federal Occupational Health Services (FOH).11 We also interviewed 

experts from HHS’s National Institute of Mental Health (NIMH)12 and the 

National Institute of Environmental Health Sciences (NIEHS),13 agencies 

that funded WTC-related research. Other experts that we interviewed 

included officials from three of the key WTC health programs—the New 

York City Fire Department (FDNY) WTC Medical Monitoring and 

Treatment program, the New York/New Jersey (NY/NJ) WTC Consortium, 

and the WTC Health Registry—and researchers in occupational and 

environmental health. In addition, we reviewed published and unpublished 

reports and articles that examined lessons from the WTC disaster. To 

determine whether HHS has taken actions or developed plans that 

incorporate the lessons from the WTC health programs, we interviewed 

ASPR, ATSDR, FOH, NIEHS, NIMH, and NIOSH officials. We also reviewed 

documents from DHS, HHS, and the Congressional Research Service and 

reviewed relevant disaster-related statutes. Our review focused on the 

 8

ASPR coordinates emergency preparedness activities among HHS agencies; other federal 

departments, agencies, and offices; and state and local officials. 

9

NIOSH conducts research on and makes recommendations for the prevention of workrelated injury and illness. 

10ATSDR performs functions concerning the effect on public health of hazardous 

substances in the environment, including designing and conducting surveillance programs 

and establishing and maintaining registries of persons exposed to toxic substances. 

11FOH provides occupational health and safety services to federal agencies located 

throughout the United States. 

12NIMH supports research on the diagnosis, treatment, and prevention of mental disorders.

13NIEHS conducts and funds research and training on environmental health. The agency 

has two programs, the Worker Education and Training Program and the Superfund Basic 

Research Program, that specifically relate to the effects of the environment on the health 

and safety of workers, including responders. 

Page 3 GAO-08-610 Lessons from Responder Health Programs
physical and mental health needs of responders following a disaster. We 

did not examine HHS’s efforts to prevent physical or psychological harm 

to responders during disaster response, which are important but beyond 

the scope of this report. We conducted this performance audit from 

November 2006 through May 2008 in accordance with generally accepted 

government auditing standards. Those standards require that we plan and

perform the audit to obtain sufficient, appropriate evidence to provide a 

reasonable basis for our findings and conclusions based on our audit 

objectives. We believe that the evidence obtained provides a reasonable

basis for our findings and conclusions based on our audit objectives. 

We have identified five important lessons from the experience of the WTC 

health programs that could help with the development of responder health

programs in the event of a future disaster. First, registering all responders 

during a response to a disaster could improve implementation of screening 

and monitoring services. Second, designing and implementing screening 

and monitoring programs that foster the ability to conduct epidemiologic 

research—that is, scientific research designed to understand the 

distribution and determinants of disease or health status in a population—

could improve the understanding of health effects experienced by 

responders and help determine the need for ongoing monitoring. Third, 

providing timely mental health screening and monitoring that is integrated

with physical health screening and monitoring could improve the ability to 

accurately diagnose physical and mental health conditions and prevent 

more serious mental health conditions from developing. Fourth, including

a treatment referral process in screening and monitoring programs could 

improve the ability of responders to gain access to needed treatment. 

Fifth, making comparable services available to all responders, regardless 

of their employer or geographic location, could ensure more equitable

access to services for responders and help ensure that data collected 

about responders’ health are consistent and comprehensive.

Results in Brief 

HHS has taken steps to facilitate responder registration, but has not 

developed a department-level plan for responder health programs. ATSDR 

has developed a Rapid Response Registry (RRR) survey instrument that 

state and local entities can voluntarily adopt to register responders and 

other individuals exposed to a disaster. In a separate effort, ASPR is taking 

steps to establish a system to register HHS employees and other federal 

public health and medical personnel who are deployed to a disaster under 

the authority of the Secretary of HHS, but it has not completed this effort. 

HHS has not developed a department-level plan for designing and 

implementing responder health programs that incorporates the lessons 

Page 4 GAO-08-610 Lessons from Responder Health Programs
from the WTC health programs. As a result, HHS has not indicated 

whether its policies and actions following a disaster or emergency would 

apply these lessons. Another consequence of not having a plan is that HHS 

has not described its components’ roles and responsibilities for designing 

and implementing responder health programs. According to the NRF, 

agencies should clearly define roles and responsibilities in their disaster 

preparedness plans, but HHS has not identified which components would 

be involved in responder health programs, which component would take 

the lead, how the expertise of various components would be used, and 

how efforts would be coordinated. In the absence of a department-level 

plan, NIOSH developed a proposal in February 2008 for a project to 

develop strategies to ensure responder safety and health. This proposal is 

a step in the right direction for addressing responder health issues, but it 

does not fully address the lessons that have been identified from the WTC 

health programs. 

To ensure that effective programs are developed to deal with the health

effects that responders may experience in the event of a future disaster, 

we recommend that the Secretary of HHS develop a department-level

responder screening and monitoring plan that defines the roles and 

responsibilities of HHS components and incorporates the five lessons 

identified from the experience of the WTC health programs. In its 

comments on a draft of this report, HHS provided additional information 

about ASPR’s responsibilities and activities, as well as technical 

comments, which we incorporated as appropriate. HHS did not comment 

on our recommendation but said that any overall HHS plan should include 

guidance on treatment referral processes and methods to ensure 

comparable treatment services across all responder groups. 

When a disaster or emergency overwhelms state and local response 

capabilities, the federal government can provide assistance with response 

and recovery efforts. FEMA, the federal agency responsible for 

coordinating federal disaster response efforts, collaborates with HHS on 

health issues related to disasters. Following the September 11, 2001, attack 

on the WTC, FEMA provided funding to HHS to establish certain WTC 

health programs. HHS’s disaster response and recovery activities operate 

within an administrative and legal framework that helps to define federal

agency roles and responsibilities and gives HHS certain authorities. 

Background 

Page 5 GAO-08-610 Lessons from Responder Health Programs
Following the attack on the WTC, the Congress appropriated 

approximately $8.8 billion to FEMA, over several years, for response and 

recovery activities.14 FEMA entered into interagency agreements with HHS 

agencies, such as NIOSH, ASPR, and ATSDR, to distribute funding to 

government and private organizations to implement health screening and 

monitoring programs for responders and other affected groups. In fiscal 

year 2006, the Congress appropriated $75 million to CDC that was 

available for monitoring and treatment services for certain WTC 

responders.15 The Congress made additional appropriations to CDC 

available for the same purpose in fiscal years 2007 and 2008.

16 Federal 

funds appropriated or awarded for the WTC health programs from 

October 2001 through December 2007 have totaled about $369.2 million. 

Overview of WTC Health 

Programs 

There are four key WTC health programs that currently receive federal 

funding to provide voluntary health screening, monitoring, or treatment 

services to responders at no cost for illnesses and conditions related to the 

WTC disaster.17 The four programs are the FDNY WTC Medical Monitoring 

and Treatment Program; the NY/NJ WTC Consortium, which comprises 

 14See 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. 

15Department of Defense Appropriations Act, 2006, Pub. L. No. 109-148, § 5011(b), 119 

Stat. 2680, 2814 (2005) (available for personnel involved in emergency services or rescue 

and recovery activities) (available until expended). 

16In fiscal year 2007 the Congress appropriated an additional $50 million to CDC, which was 

also available for monitoring and treatment of responders involved in emergency services

or rescue and recovery activities. See U.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) (available until expended). In fiscal year 2008 the Congress provided

an appropriation of about $108.1 million for monitoring and treatment of responders 

involved in emergency services. See Consolidated Appropriations Act of 2008, 

Pub. L. No. 110-161, 121 Stat. 1844, 2172 (also available for residents, students, and others 

related to the WTC attack) (available until expended). 

17Another program, 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. 

Page 6 GAO-08-610 Lessons from Responder Health Programs
five clinical centers in the NY/NJ area;18 HHS’s WTC Federal Responder 

Screening Program; and the WTC Health Registry.

19 Unlike the other key 

programs, the WTC Health Registry does not provide in-person screening 

or monitoring services. Instead it uses periodic surveys of self-reported 

health status to collect health information on responders, as well as 

people who resided, worked, attended school, or were present in the 

vicinity of the WTC.20 (See app. I for more information about these key 

WTC health programs.) 

HHS funded the WTC health programs to serve different categories of 

responders (e.g., firefighters, federal responders, and other workers and 

volunteers). The programs also varied in their geographic coverage. For

example, the FDNY WTC Program and the NY/NJ WTC Consortium 

primarily serve, respectively, firefighters and other workers and volunteers 

who reside in the NYC area or travel to that area for services. HHS’s WTC 

Federal Responder Screening Program provides screening services to 

federal responders nationwide through its network of FOH clinics. In 

addition, beginning in late 2002, NIOSH funded services for nonfederal 

 18This program was formerly known as the worker and volunteer WTC Program. The five 

clinical centers are 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 School of

Medicine 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. 

19In addition to these four programs, two smaller programs, the Police Organization 

Providing Peer Assistance (POPPA) program and Project COPE, have received federal 

funding to provide mental health services through hotline, counseling, and referral services

to NYC Police Department employees and their family members. POPPA and Project COPE

are private programs that operate independently of the NYC Police Department. 

20The WTC Health Registry has collected baseline health data from over 71,000 people. In

the winter of 2006, the registry began its first follow-up survey of adults, and as of June

2007 over 36,000 individuals had completed the follow-up survey. The WTC Health Registry 

also provides information to participants on where they can seek health care. 

Page 7 GAO-08-610 Lessons from Responder Health Programs
responders residing outside the NYC metropolitan area.21 Table 1 provides 

information on the numbers of responders who have received various 

health services. NIOSH is the HHS administering agency for all the WTC 

health programs, except the WTC Health Registry,

22 and 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.

Table 1: Services Provided to Responders through WTC Health Programs as of 

December 31, 2007 

Responder

category 

Initial

screening

examinationa

Follow-up

monitoring

examinationb

Physical 

health

treatment

c

Mental health

treatment

d

Firefighters 14,620 17,569 2,456 2,453

Workers and 

volunteers 22,748 11,315 7,288 3,131

Nonfederal

responders 

residing outside 

NYC area 818 176 70 70

Federal 

responders 1,355 Not applicablee

Not applicableeNot applicablee

Total 39,541 29,060 9,814 5,654

Source: NIOSH. 

Note: NIOSH based these data on reports from the programs that provided the services, with the 

exception of treatment services for nonfederal responders residing outside of the NYC area. Data for 

this category are estimates based on data NIOSH obtained from the Association of Occupational and 

Environmental Clinics. The Association of Occupational and Environmental Clinics provides physical 

and mental health treatment to WTC responders who reside outside the New York City area with 

funds provided by the American Red Cross. 

a

Cumulative number of initial screening examinations performed since program began. 

b

Cumulative number of follow-up examinations performed since inception of monitoring; some 

responders have received multiple monitoring examinations. 

 21From late 2002 to July 2004, NIOSH funded the Association of Occupational and 

Environmental Clinics to provide screening services to nonfederal responders outside the 

NYC area. In June 2005, NIOSH began funding the Mount Sinai School of Medicine Data 

and Coordination Center to provide screening and monitoring services to nonfederal

responders outside the NYC area, and in May 2007 the Data and Coordination Center

contracted with QTC Management, Inc., to provide these services. QTC is a private 

provider of government-outsourced occupational health and disability examination 

services. 

22ATSDR is the HHS administering agency for the WTC Health Registry. 

Page 8 GAO-08-610 Lessons from Responder Health Programs
c

Number of responders who received treatment for physical health conditions, January 1, 2007, 

through December 31, 2007. 

d

Number of responders who received treatment for mental health conditions, January 1, 2007, 

through December 31, 2007. 

e

Responders enrolled in the WTC Federal Responder Screening Program are eligible for an initial 

screening examination only. 

Information collected by the WTC health programs and other researchers 

has helped to identify the physical and mental health effects of the WTC 

disaster. 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.23 Almost all firefighters who responded to the 

attack experienced respiratory effects, including WTC cough. One study 

conducted by researchers affiliated with the FDNY WTC Program found 

that exposed firefighters on average experienced a decline in lung function 

equivalent to that which would be produced by 12 years of aging.24 A study 

conducted by WTC Health Registry researchers found that responders’ 

risk of newly diagnosed asthma increased with greater exposure to the 

WTC disaster site, as indicated by arriving at the site at an earlier date or 

working there for a longer duration.25 The Mount Sinai School of Medicine 

clinical center of the NY/NJ WTC Consortium found that about half of the 

participants in its screening program met the threshold criteria for being 

referred for a clinical mental health evaluation.26 Commonly reported 

mental health effects among responders and other affected individuals 

included symptoms associated with post-traumatic stress disorder (PTSD), 

 23See, for example, S.M. Levin et al., “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, no. 35 (2004), and R. 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). 

24G. I. Banauch et al., “Pulmonary Function after Exposure to the World Trade Center 

Collapse in the New York City Fire Department,” American Journal of Respiratory and

Critical Care Medicine, vol. 174 (2006). 

25K. Wheeler et al., “Asthma Diagnosed after 11 September 2001 among Rescue and

Recovery Workers: Findings from the World Trade Center Health Registry,” 

Environmental Health Perspectives, vol. 115, no. 11 (2007). 

26R.P. Smith et al., “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, no. 35 (2004). 

Page 9 GAO-08-610 Lessons from Responder Health Programs
depression, and anxiety.27 Behavioral health effects such as increased 

alcohol and tobacco use were also reported.28

In previous reports we noted limitations of the WTC health programs and 

problems with their implementation.29 For example, we reported that 

federal responders were eligible only for screening services and did not 

receive monitoring services as other responders did. We also reported on 

the service interruptions in the WTC Federal Responder Screening 

Program. HHS established the program in June 2003, suspended it in 

March 2004, resumed it in December 2005, suspended it again in January 

2007, and resumed it in May 2007. Similarly, NIOSH’s services for 

nonfederal responders residing outside the NYC area were not 

continuously available for all responders. In addition, some of the 

screening and monitoring programs initially faced difficulties referring 

responders for treatment. Throughout the history of these programs, 

program officials have raised concerns about whether the duration of 

federal funding would be adequate. 

Administrative and Legal 

Framework for HHS’s

Disaster Response 

Activities

HHS’s disaster response activities, including efforts to address the health 

of responders, operate within an administrative and legal framework. In 

response to the attacks on September 11, 2001, the Congress enacted the 

Homeland Security Act of 2002, which established DHS and required the 

department to consolidate existing federal government response plans 

into a single coordinated national response plan.30 In December 2004, DHS 

issued the National Response Plan (NRP), which detailed missions, 

policies, structures, and responsibilities of federal agencies for 

 27R.P. Smith et al., “Mental Health Status;” and M.A. Perrin et al., “Differences in PTSD 

Prevalence and Associated Risk Factors Among World Trade Center Disaster Rescue and 

Recovery Workers,” American Journal of Psychiatry, vol. 164, no. 9 (2007). 

28R.P. Smith et al., “Mental Health Status;” D.Vlahov et al., “Increased Use of Cigarettes, 

Alcohol, and Marijuana among Manhattan, New York, Residents after the September 11th 

Terrorist Attacks,” American Journal of Epidemiology, vol. 155, no. 11 (2002); and M.P. 

Bars et al., “Tobacco Free With FDNY: The New York City Fire Department World Trade

Center Tobacco Cessation Study,” Chest, vol. 129, no. 4 (2006). 

29See GAO, September 11: Monitoring of World Trade Center Health Effects Has 

Progressed, but Program for Federal Responders Lags Behind, GAO-06-481T (Washington,

D.C.: Feb. 28, 2006), and September 11: HHS Needs to Ensure the Availability of Health 

Screening and Monitoring for All Responders, GAO-07-892 (Washington, D.C.: July 23, 

2007). 

30Pub. L. No. 107-296, §§ 101, 502, 116 Stat. 2135, 2142, 2212-13. 

Page 10 GAO-08-610 Lessons from Responder Health Programs
coordinating resource and programmatic support to states, localities, and 

other entities. The NRP was to be invoked when the President issued a 

major disaster or emergency declaration under the Stafford Act.31 The NRP 

was first invoked in August 2005 in response to Hurricane Katrina and was 

subsequently updated in May 2006. In January 2008, DHS issued the NRF 

to supersede the NRP.32

The NRF is intended to provide a coordinated approach to disaster and 

emergency response and short-term recovery. FEMA is responsible for 

assigning work and providing funding to other federal agencies for 

performing operations included in the NRF. To execute this responsibility, 

FEMA uses mission assignments, which are interagency agreements with 

other federal agencies intended to meet immediate and short-term needs. 

When a disaster or emergency is declared under the authority of the 

Stafford Act and FEMA issues a mission assignment, a federal agency has 

60 days after the declaration to complete tasks described in the mission 

assignment, unless time is extended by FEMA due to unusual or 

extenuating circumstances.33

Under the NRF, HHS is the primary agency for coordinating the federal

government’s public health and medical response, and the Department of 

Labor’s Occupational Safety and Health Administration (OSHA) is the lead 

agency for responding to worker safety and health concerns, with HHS as 

a cooperating agency. HHS’s responsibilities for public health and medical 

response are described in the NRF’s Public Health and Medical Services 

Annex, also known as Emergency Support Function #8 (ESF#8). Under 

ESF#8, HHS can deploy its public health and medical personnel, including

civilian volunteers, to the affected area. In addition, HHS can request an 

appropriate organization supporting ESF#8, such as the Environmental 

Protection Agency or the American Red Cross, to activate and deploy its 

public health and medical personnel. HHS can also assist state, tribal, and

local officials in establishing a registry of potentially exposed individuals 

and conducting long-term monitoring for potential health effects. HHS’s 

ASPR coordinates ESF#8 actions. OSHA’s and HHS’s responsibilities for 

worker safety and health are described in the NRF’s Worker Safety and 

 31Robert T. Stafford Disaster Relief and Emergency Assistance Act (Stafford Act), 

Pub. L. No. 93-288, 88 Stat. 143 (1974) (as amended) (codified as amended at 42 U.S.C. 

§§ 5121-5207). 

32The NRF became effective March 22, 2008. 

3344 C.F.R. 206.208 (2007). 

Page 11 GAO-08-610 Lessons from Responder Health Programs
Health Support Annex.34 Under the Worker Safety and Health Support 

Annex, OSHA, in coordination with HHS, is responsible for providing 

technical assistance, advice, and support for medical surveillance and 

monitoring and for evaluating the need for longer-term medical monitoring 

of response and recovery workers. OSHA and NIOSH have established an 

interagency agreement that broadly describes NIOSH’s role in carrying out 

the Worker Safety and Health Support Annex. However, NIOSH would 

receive funding specifically to carry out activities related to the Worker 

Safety and Health Support Annex only if, after a disaster, FEMA issued a 

mission assignment to OSHA for such activities and OSHA in turn assigned 

activities to NIOSH.35

In addition to the NRF, there are certain statutes that are relevant to HHS’s

responsibilities concerning responder health. According to the Pandemic 

and All-Hazards Preparedness Act, HHS is the lead federal agency for 

public health and medical responses to emergencies and disasters. The act 

specifies that ASPR must carry out certain functions during a response, 

including registering federal public health and medical personnel who are 

deployed under the authority of the Secretary of HHS.36 These personnel 

include members of the National Disaster Medical System (NDMS).37

 34The Worker Safety and Health Support Annex indicates that HHS’s responsibilities are to 

be carried out by three HHS agencies—ATSDR, NIEHS, and NIOSH—and indicates that 

OSHA and NIOSH are to collaborate in all areas of the annex. 

35In the aftermath of Hurricane Katrina, FEMA did not issue a mission assignment to 

authorize OSHA to receive reimbursement for evaluating the need for and providing 

medical surveillance and monitoring. Federal agencies involved in the response disagreed 

over which agencies should fund medical monitoring of responders, and in general there 

was no systematic monitoring of the health of responders to Hurricane Katrina. See GAO,

Disaster Preparedness: Better Planning Would Improve OSHA’s Efforts to Protect 

Workers’ Safety and Health in Disasters, GAO-07-193 (Washington, D.C.: Mar. 28, 2007)

and September 11: Problems Remain in Planning for and Providing Health Screening 

and Monitoring Services for Responders, GAO-07-1253T (Washington, D.C.: Sept. 20, 

2007). 

36Pub. L. No. 109-417, §§ 101, 102, 120 Stat. 2831, 2832-2833 (2006). The other functions that

the act assigns to ASPR include credentialing, organizing, training, and equipping federal 

public health and medical personnel who are under the authority of the Secretary; the act

also gives ASPR the authority to deploy these personnel. 

37Under ESF#8, NDMS is a federally coordinated system to supplement an integrated 

national medical response capability for assisting state and local authorities in the event of

a disaster. Components of the system include medical response to a disaster area in the 

form of personnel, supplies, and equipment; patient movement from the disaster site to 

unaffected areas of the nation; and medical care at participating hospitals in unaffected 

areas. 

Page 12 GAO-08-610 Lessons from Responder Health Programs
Section 709 of the Security and Accountability for Every Port Act of 2006 

(also known as the SAFE Port Act) provides that the President, acting 

through HHS, may establish and implement a program to provide 

screening and monitoring services for certain individuals affected by a 

presidentially declared disaster, including responders. The act specifies 

that such a program may include collecting exposure data, developing and 

disseminating information and educational materials, performing baseline 

and follow-up clinical and mental health evaluations, establishing and 

maintaining an exposure registry, studying short- and long-term health 

effects through epidemiologic and other health studies, and providing 

assistance to individuals in determining eligibility for health coverage and 

identifying appropriate health services. The act also authorizes the 

President, acting through HHS, to establish cooperative agreements with a 

medical institution, including a local health department or a consortium of

medical institutions, to carry out this program.38

We have identified five important lessons from the experience of the WTC 

health programs. These lessons relate to activities during the response to a 

disaster as well as during the recovery period, when follow-up monitoring 

or treatment may be needed. Although some of the difficulties

encountered by the WTC programs resulted from the unique nature of the 

WTC disaster, applying these lessons could help to improve the response 

to and recovery from future disasters. 

Five Important 

Lessons Can Be 

Drawn from the 

Experience of the 

WTC Health Programs

Lesson 1: Registering all responders during a response to a disaster

could improve implementation of screening and monitoring services. 

During the WTC disaster response, neither NYC nor the federal 

government developed a registry of all responders who worked at the 

WTC disaster site. Therefore WTC health program officials subsequently 

had to compile a list of responders who were potentially eligible to receive 

services—a difficult, time-consuming, and costly task that was only 

partially successful.39 WTC Health Registry officials and WTC Federal 

Responder Screening Program officials tried to compile a list of potentially

eligible responders by contacting government agencies, private-sector 

employers, and volunteer organizations to locate employees who had 

 38Pub. L. No. 109-347, § 709, 120 Stat. 1884, 1947. 

39There is no definitive count of those who served as responders. Estimates have ranged

from about 40,000 to about 91,000. 

Page 13 GAO-08-610 Lessons from Responder Health Programs
responded to the WTC disaster. According to an ATSDR official, some 

government agencies and many employers did not cooperate with program 

officials, primarily because of concerns about confidentiality.40 According 

to an ATSDR official, the effort to compile a list of responders potentially 

eligible for the WTC Health Registry cost about $1 million and took about

19 months. 

Not registering responders during disaster response efforts affects 

outreach activities and hinders efforts to plan services. An official from the 

NY/NJ WTC Consortium said that without a definitive list of responders, 

the program had to issue widespread and costly public service 

announcements to identify and enroll eligible responders. The lack of a 

complete registry with demographic and exposure information also made 

it difficult to quantify the needs for screening, monitoring, and treatment 

services for responders. For example, a WTC health program official told 

us that not knowing where responders are located around the country has

made it difficult to determine how to design services and allocate 

resources for the responder population living outside the NYC 

metropolitan area. 

Without a complete registry of responders, it is difficult to accurately 

determine the incidence41 and causes of health problems experienced by 

the responder population. An epidemiologist involved in the NY/NJ WTC 

Consortium told us that efforts to determine the incidence of health 

effects among responders were complicated because the number of 

responders who were exposed is not known. The WTC health programs 

have been able to collect information only on responders who seek out 

their services or fill out their surveys. Because these responders constitute 

a self-selected population, program officials have not been able to 

determine the incidence of health effects among the total population of 

responders. In addition, because there was no registry with reliable 

information on the amount, duration, and types of exposure (e.g., physical 

hazards, environmental toxins, psychological trauma) experienced by

responders, it has been difficult to determine the relationship between 

level of exposure and changes in physical and mental health. The WTC 

 40In addition, some federal agency officials believed that medical screening was not 

necessary for their employees, and some agencies had instituted their own screening 

efforts. 

41Incidence is a measure of new cases of disease, illness, or condition during a specified 

time period. 

Page 14 GAO-08-610 Lessons from Responder Health Programs
health programs have had to rely on participants’ recollection of their 

exposure. Most of the federally funded WTC health programs were not 

started immediately, but rather months after the disaster, which affected 

the ability of participants to remember their exposures accurately. For 

example, WTC Health Registry officials told us they did not begin 

surveying responders until 2 years after the WTC disaster. 

WTC health program officials told us that registering responders during a 

response to a disaster would help ensure that responders are contacted

before some scatter and become more difficult to locate. Having a 

complete registry could improve the ability of responder health programs 

to conduct outreach for screening and monitoring services, improve 

efforts to plan services and allocate resources, and provide data for 

epidemiologic research.

Lesson 2: Designing and implementing screening and monitoring 

programs that foster the ability to conduct epidemiologic research could 

improve the understanding of health effects experienced by responders

and help determine the need for ongoing monitoring. 

Despite an accumulation of evidence about the health effects experienced

by responders, researchers have acknowledged that there remains some 

uncertainty and controversy about the health risks associated with the 

disaster, especially the long-term health effects.42 In addition to a lack of 

information about the number and identity of responders and their 

exposures, another serious limitation to understanding the health effects 

of the WTC disaster is the fact that the WTC screening and monitoring 

programs were not explicitly designed and implemented to conduct 

research, in particular epidemiologic research. Therefore, certain 

opportunities to collect and analyze data were lost. NIOSH officials told us

that the FDNY WTC program and the NY/NJ WTC Consortium were not 

designed to conduct epidemiologic research but rather were established as 

clinical programs focused on the health of individual responders.43 For 

example, the programs were not designed to test specific hypotheses 

about health effects or to compare participants’ health with the health of a 

comparison group. 

 42J.M. Samet, A.S. Geyh, and M.J. Utell, “The Legacy of World Trade Center Dust,” New 

England Journal of Medicine, vol. 356, no. 22 (2007). 

43The WTC Health Registry was designed to conduct epidemiologic research. However, the

data collected by this program are self-reported and not clinically verified. 

Page 15 GAO-08-610 Lessons from Responder Health Programs
A NIOSH official told us NIOSH did not design and implement FDNY’s and 

the Consortium’s monitoring programs to conduct research because of 

restrictions that FEMA placed on the funding for the programs. Because 

FEMA primarily provides funding for programs to address the short-term 

effects of a disaster, in its interagency agreement with NIOSH to establish 

the monitoring programs, FEMA specified that the funding it provided 

could not be used for research. HHS’s Federal Responder Screening 

Program also was not designed to collect any information on responders’ 

health for the purposes of research. The interagency agreement between 

FEMA and ASPR to establish the program limited the program to a 

onetime screening examination, and HHS officials said they did not have

the resources to conduct epidemiologic research with the federal 

responder population. HHS officials told us that, in hindsight, such 

research clearly would have provided useful data and benefited the 

program. 

Because of the restrictions on the use of federal funding for research, the 

FDNY WTC program and the NY/NJ WTC Consortium relied on other 

resources to conduct research, and the programs vary in the type and

amount of studies they have published. Many of the studies have been 

descriptive, such as reports of the incidence of upper and lower 

respiratory symptoms among responders. The FDNY WTC program 

initiated its own research on the health effects of the WTC disaster on 

firefighters and quickly published a series of papers about the health 

effects experienced by firefighters in peer-reviewed journals.44 It was able 

to do this because the FDNY WTC program is based in FDNY’s Bureau of 

Health Services, which has an established research infrastructure. In 

addition, the bureau had baseline medical data on all firefighters, and all 

firefighters are required to have an annual physical examination. In 

contrast, the NY/NJ WTC Consortium has had more difficulty conducting 

research. There have been fewer studies conducted by researchers 

affiliated with the Consortium, and it has taken longer for the studies to be 

published. The NY/NJ WTC Consortium serves a more heterogeneous 

responder population of workers and volunteers and lacks baseline health

 44See, for example, D.J. Prezant et al., “Cough and Bronchial Responsiveness in Firefighters

at the World Trade Center Site,” New England Journal of Medicine, vol. 347, no. 11 (2002); 

G.I. Banauch et al., “Persistent Hyperreactivity and Reactive Airway Dysfunction in 

Firefighters at the World Trade Center,” American Journal of Respiratory and Critical

Care Medicine, vol. 168 (2003); G.I. Banauch et al., “Pulmonary Function after Exposure to

the World Trade Center Collapse in the New York City Fire Department,” American 

Journal of Respiratory and Critical Care Medicine, vol. 174 (2006); D.J. Prezant, “World 

Trade Center Cough Syndrome and Its Treatment,” Lung, vol. 186, suppl. 1 (2008). 

Page 16 GAO-08-610 Lessons from Responder Health Programs
status information on this population. In addition, in our discussions with 

clinicians and researchers affiliated with the NY/NJ WTC Consortium, they 

raised concerns such as the program lacking sufficient in-house 

experience for conducting research or lacking data collection and 

management tools to facilitate conducting research. For example, it did 

not have an adequate electronic medical records system. In addition, 

information collected by the program had to go through a protracted data

cleaning process before it could be analyzed. 

WTC health program officials and others also noted that there was a lack 

of previously tested, scientifically based protocols for conducting physical 

and mental health screening, making it difficult to obtain conclusive data

to conduct research about the health effects of responders. One clinician 

noted that the mental health protocol used by the NY/NJ WTC Consortium 

focused on delivering good clinical services but that there was not enough 

emphasis on making the protocol scientifically sound for drawing 

definitive conclusions about the mental health effects experienced by 

responders. 

Officials involved in the WTC health programs and other experts have 

learned that screening and monitoring programs need to be able to 

scientifically document the health effects of a disaster. They have 

observed that to achieve this goal the programs should be designed to 

have the capacity to conduct epidemiologic research, such as by having

research hypotheses, using data collection protocols that will produce 

information useful for understanding health effects, and studying 

comparison groups of people not affected by the disaster. In addition, 

conducting scientific research of health effects can help public health

officials determine whether long-term monitoring is needed. In 2007, 

NIOSH officials identified a need for additional funding to allow the 

monitoring programs to conduct research and answer important scientific

questions about the health of WTC responders. 

Lesson 3: Providing timely mental health screening and monitoring 

that is integrated with physical health screening and monitoring could 

improve the ability to accurately diagnose physical and mental health 

conditions and prevent more serious mental health conditions from 

developing. 

Page 17 GAO-08-610 Lessons from Responder Health Programs
Responders to the WTC disaster were at high risk for mental health 

problems. They experienced an unprecedented, highly traumatizing event.

Many workers and volunteers worked for extended periods of time 

without sufficient respite. Some of them did not have training in disaster 

response and were therefore more vulnerable to the stress of the event. 

Despite the early recognition of the need for mental health services, the

mental health status of responders did not receive as much attention 

initially as their physical health status. For example, when the Mount Sinai 

School of Medicine, one of the clinical centers in the NY/NJ WTC 

Consortium, implemented its federally funded screening program in July 

2002, the emphasis was on conducting a thorough physical health 

assessment. The mental health status of responders was initially assessed 

with a short written questionnaire, and depending on a person’s score, 

individuals were referred for an in-person clinical mental health 

evaluation. Recognizing the seriousness of mental health problems among 

responders, the Mount Sinai School of Medicine Department of Psychiatry 

sought private funding from the Robin Hood Foundation45 to develop a 

broader mental health component to the screening program. With the 

additional funds, the program was able to develop and use a more 

extensive mental health questionnaire and have a trained mental health 

professional conduct in-person interviews. 

Screening and monitoring programs that integrate physical and mental 

health assessments can have several benefits. According to clinicians and 

researchers, such programs can improve the ability to accurately diagnose

and differentiate physical and mental health conditions because mental 

health conditions sometimes present as physical symptoms. For example, 

gastrointestinal problems can sometimes be a sign of psychological stress. 

Timely mental health screening and monitoring can also prevent some 

mental health conditions from progressing to more serious disorders. For 

example, obtaining treatment for mild depression might prevent a major 

depressive disorder from developing, or treating depression might prevent

alcoholism. 

Lesson 4: Including a treatment referral process in screening and 

monitoring programs could improve the ability of responders to gain 

access to needed treatment. 

 45The Robin Hood Foundation is a charitable organization based in New York City. 

Page 18 GAO-08-610 Lessons from Responder Health Programs
Before federal funding became available in fiscal year 2006 to pay for 

treatment of responders’ health effects, WTC health program officials told

us that it was a challenge to find providers who would treat responders 

whose screening or monitoring examination indicated a need for 

treatment. As clinicians at the FDNY WTC program and the NY/NJ WTC 

Consortium began screening responders, they immediately recognized that 

some responders required additional diagnosis or treatment for physical or 

mental health conditions. Although the FDNY WTC program was able to 

refer firefighters to its Bureau of Health Services, which provided 

treatment, the NY/NJ WTC Consortium did not have a similar option. 

Officials from this program said that identifying providers available and 

willing to treat participants was a major part of their operations and was 

especially difficult when participants lacked health insurance, which was 

often the case. For example, 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 required to maintain eligibility for coverage. 

HHS officials, clinicians involved with the WTC health programs, and 

other experts said that an integral part of screening and monitoring is the 

establishment of a linkage to treatment services. Some indicated that as 

professionals they also felt an ethical obligation to be able to refer people 

in need of care to treatment services. An NIMH official told us that a 

working group of agency officials and other experts examining responder 

mental health issues concluded that providers who identified a need for 

treatment during screening examinations acquired a responsibility to 

provide access to care. 

Lesson 5: Making comparable services available to all responders, 

regardless of their employer or geographic location, could ensure more 

equitable access to services for responders and help ensure that data 

collected about responders’ health are consistent and comprehensive. 

Screening and monitoring programs for responders to the WTC disaster 

were set up as separate programs on the basis of the responder’s employer 

and geographic location, and the types of services available and 

information collected about responders varied by program. For example, 

the WTC Federal Responder Screening Program provided an initial 

screening examination for federal responders, while the FDNY WTC 

program and the NY/NJ WTC Consortium provided an initial screening 

examination followed by monitoring examinations every 18 months for 

firefighters and other workers and volunteers. Additionally, from 2002 

Page 19 GAO-08-610 Lessons from Responder Health Programs
until summer 2007, NIOSH did not consistently ensure the availability of 

screening and monitoring services for nonfederal responders residing 

outside the NYC area. For example, 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. 

Responders who traveled to NYC from around the country following the 

attack have testified before the Congress about having difficulty receiving

services. Finally, because the WTC Federal Responder Screening Program 

collected only limited data, less is known about the health effects 

experienced by federal responders than is known about other categories 

of responders. 

Officials involved with the WTC health programs have recognized the 

value of designing responder health programs that provide comparable 

services to all responders and of centrally coordinating these services, and 

they have been making efforts to provide comparable services to all WTC 

responders. For example, NIOSH took steps to increase the availability of

services to nonfederal responders outside the NYC metropolitan area 

when in June 2007 it arranged for QTC Management, Inc., to provide 

screening and monitoring examinations nationwide for 1 year. In March 

2008, CDC issued a request for organizations to indicate their interest in 

coordinating a national program for WTC responders that would ensure 

that all WTC responders who reside outside the NYC metropolitan area 

have access to federally funded screening, monitoring, and treatment 

services. 

In the event of a future disaster, providing comparable services to all 

responders would ensure more equitable access to services; that is, no 

group of responders would be unable to obtain certain services on the 

basis of who their employer was or where they reside. This could help 

ensure that responders receive timely care for conditions and illnesses 

related to the disaster. In addition, ensuring consistency in program design 

could help ensure that programs collect data that are consistent and 

comprehensive. 

Page 20 GAO-08-610 Lessons from Responder Health Programs
HHS has taken steps to ensure that responders are registered, but it has 

not developed a department-level plan for responder health programs. 

ATSDR has developed a survey instrument that state and local entities can

voluntarily adopt to register responders. ASPR is also taking steps to 

establish a system to register HHS employees and certain other volunteers, 

but it has not completed its effort. HHS has not developed a departmentlevel plan for designing and implementing responder health programs that 

incorporates the lessons from the WTC health programs. In addition, HHS 

has not described the roles and responsibilities of its components in 

designing and implementing responder health programs. In the absence of 

a department-level plan, NIOSH developed a proposal for a project to 

develop strategies to ensure responder safety and health. NIOSH’s project 

would address some aspects of the lessons from the WTC health 

programs. 

Using experience gained from the WTC disaster, HHS’s ATSDR has 

developed and tested a Rapid Response Registry (RRR) survey instrument 

that state and local entities can voluntarily adopt to register responders 

and other individuals exposed to a disaster. The RRR survey instrument, a 

two-page form that can be distributed in paper or electronic format, is 

designed to collect information that would enable officials to inform 

individuals about follow-up health services and facilitate research studies. 

It contains 38 questions that are intended to collect basic demographic and 

health information, including contact information; exposure information; 

and information on exposure-related health effects, immediate health and 

safety needs, and health insurance. 

HHS Has Taken Steps 

to Facilitate 

Responder 

Registration, but Has 

Not Developed a Plan 

for Responder Health 

Programs 

HHS Has Taken Some 

Steps to Ensure That 

Responders Are Registered 

Following a Disaster, but 

These Efforts Are 

Incomplete 

In October 2005, ATSDR established a contract with Research Triangle 

Institute International (RTI)46 to support state and local efforts to 

implement the RRR survey instrument during responses to disasters. RTI’s 

responsibilities include providing information to the entire at-risk 

population on how to enroll in the RRR.47 RTI is also responsible for 

identifying individuals who left the disaster area before being enrolled in 

the RRR. According to an ATSDR official, data would be collected and 

 46RTI is a private corporation that conducts research and provides technical assistance to 

government agencies and businesses. 

47ATSDR officials told us they provided the RRR instrument in response to several requests

during Hurricane Katrina. However, they do not know whether the RRR was implemented 

to any significant extent after the hurricane. 

Page 21 GAO-08-610 Lessons from Responder Health Programs
maintained by state or local entities with ATSDR’s and RTI’s assistance. 

ATSDR has shared the instrument with other federal agencies, all state 

health departments, and local response organizations; an ATSDR official 

told us that as of February 2008, 21 states had included the RRR survey in 

their disaster planning.48

NIOSH has also taken some steps that relate to the registering of 

responders. In 2005, NIOSH posted interim guidance on its Web site to 

help occupational health and other clinicians conduct postexposure 

medical screening of workers leaving hurricane disaster recovery areas. 

The guidance states that all responders should receive some basic 

screening services and that their identity and contact information should

be obtained on their completion of or return from response activities. The 

guidance outlines minimum screening information needs, including 

contact information, health status information, type of response work, 

exposure information, and injuries or symptoms. 

Finally, although ASPR is required under the Pandemic and All-Hazards 

Preparedness Act to register federal public health and medical personnel

who are deployed under the Secretary of HHS’s authority, it has not 

completed efforts to ensure that these responders would be registered in 

the event of an emergency or a disaster. As part of its efforts, ASPR 

recently established the Center for Responder Safety, Health, and Risk 

Management, which is working to develop a system to register responders 

and record their health problems and make referrals. An ASPR official told

us that the Center is exploring how to adapt two existing electronic record

systems used by NDMS for this purpose: the Joint Patient Tracking System 

and the Electronic Medical Record. 

HHS Has Not Developed a 

Plan That Incorporates the 

Lessons from the WTC 

Health Programs 

HHS has not developed a department-level plan for designing and 

implementing responder health programs that incorporates the five 

lessons from the WTC health programs. As a result, HHS has not indicated 

whether its policies and actions following a disaster or emergency would 

apply these lessons, such as by building epidemiologic research into the 

design of screening and monitoring services. Another consequence of not

having a plan is that HHS has not described the roles and responsibilities 

 48According to an ATSDR official, the 21 states are Arizona, California, Colorado, 

Connecticut, Florida, Georgia, Guam, Kentucky, Massachusetts, Michigan, Minnesota, 

Nebraska, New Jersey, New York, North Carolina, Oklahoma, Oregon, Rhode Island, South 

Carolina, Tennessee, and Texas. 

Page 22 GAO-08-610 Lessons from Responder Health Programs
of its components in designing and implementing responder health 

programs. According to the NRF, agencies should clearly define roles and

responsibilities in their disaster preparedness plans, but HHS has not 

identified which components would be involved in responder health 

programs, which component would take the lead, how the expertise of 

various components would be used, and how efforts would be

coordinated.

In the absence of a department-level plan describing the roles of all 

relevant HHS agencies with regard to responder health programs, NIOSH 

developed a proposal in February 2008 for working with some of the 

relevant HHS components to develop strategies to ensure responder safety 

and health. A NIOSH official told us that the purpose of the project would 

be to help HHS determine how it would respond to an activation of the 

NRF and how it would implement the SAFE Port Act. One of the 

objectives of the project would be to produce a guidance document for 

federal, state, and local governments and private businesses and 

organizations to assist them in providing services to responders. A second 

objective would be to develop a responder surveillance system to 

document and integrate data on exposures and health effects to identify 

ways to control potential hazards and determine the need for long-term 

monitoring. NIOSH partnered with other HHS components, such as ASPR 

and NIEHS, to develop the proposal. As part of the project, NIOSH 

officials plan to meet with ATSDR officials about adapting the RRR and 

other surveillance tools to collect more specific information about a 

responder’s occupation and exposure. In addition, to obtain other 

perspectives on the project, NIOSH officials plan to meet with state health 

department representatives in May 2008 and to conduct a focus group with 

risk managers with an interest in responder safety and health in June 2008. 

NIOSH’s project would address some aspects of the lessons from the WTC 

health programs. For example, regarding the first lesson—registering all 

responders during the response to a disaster—the proposed guidance 

document would include guidelines for tracking responders during an 

event, including their activities, exposures, and physical and mental health 

effects. In addition, the project’s objective to develop a responder 

surveillance system acknowledges aspects of the second lesson—ensuring 

that screening and monitoring programs are designed to foster 

epidemiologic research.

Page 23 GAO-08-610 Lessons from Responder Health Programs
Thousands of responders to the WTC disaster have experienced serious 

physical and mental health problems as a result of their response and 

recovery efforts. Over the past several years the federal government has 

provided significant resources to support screening, monitoring, and 

treatment services for these responders, and designing and implementing 

these services has involved many challenges. We have identified lessons 

from this experience that include both practical issues, such as the need to

develop a list of responders, and policy approaches, such as the 

importance of ensuring comparability of services for all responders. 

Although HHS has taken some steps to apply the first lesson concerning

registering responders, it has not completed work to adopt a system to 

register responders who are deployed to an emergency or a disaster under 

the Secretary’s authority. Timely implementation of such a system, prior to 

a disaster or emergency occurring, is important. Although NIOSH’s 

proposal for a project to develop strategies for addressing responder 

health issues is a step in the right direction, HHS has not developed a 

department-level plan that incorporates the five lessons from the WTC 

program and defines the roles and responsibilities of all HHS components 

with regard to planning and implementing responder health programs. 

Until HHS completes this work, responders to a future disaster could be 

left vulnerable if they experience health problems as a result of carrying 

out critical response and recovery activities. 

To ensure that effective programs are developed to deal with the health

effects that responders may experience in the event of a future disaster, 

we recommend that the Secretary of HHS take the following action: 

develop a department-level responder screening and monitoring plan that 

defines the roles and responsibilities of HHS components and incorporates 

the five lessons identified from the experience of the WTC health 

programs. Specifically, this plan should facilitate the registration of all 

responders and ensure that screening and monitoring services are 

designed to foster epidemiologic research; provide timely mental health 

screening and monitoring that is integrated with physical health screening 

and monitoring; include a treatment referral process; and make 

comparable services available to all responders, regardless of their 

employer or geographic location. 

Conclusions 

Recommendation for 

Executive Action 

Page 24 GAO-08-610 Lessons from Responder Health Programs
HHS reviewed a draft of this report and provided comments on our 

findings. HHS’s comments are reprinted in appendix II. HHS did not 

comment on our recommendation that HHS develop a department-level 

responder screening and monitoring plan, but acknowledged that any 

overall HHS plan should include guidance on treatment referral processes 

and methods to ensure comparable treatment services across all 

responder groups. 

In its comments, HHS provided additional information about ASPR’s 

responsibilities and activities under the Pandemic and All-Hazards 

Preparedness Act, which we incorporated as appropriate. For example, 

HHS discussed ASPR’s establishment of the Center for Responder Safety,

Health, and Risk Management to address health issues related to public 

health emergencies. HHS also said that the recommendations and 

guidance that it plans to develop through NIOSH’s project for responder 

safety and health are intended to reach a larger audience than HHS and 

that NIOSH has held or is planning meetings with state health department 

representatives, risk managers with an interest in responder safety and 

health, and other federal organizations, such as the United States Army 

Corps of Engineers, to obtain their perspectives on the project. 

Finally, HHS said that it was possible to infer from our draft report that 

long-term monitoring and treatment, including referral for treatment, are 

appropriate each time a Stafford Act declaration occurs following a 

disaster. However, our discussions of the lessons on the importance of 

registering responders and of designing responder health programs to 

foster epidemiological research noted that implementing these lessons 

would help public health officials determine whether a specific disaster 

resulted in health effects and whether long-term monitoring was 

necessary. 

HHS also provided technical comments, which we incorporated as 

appropriate.

As agreed with your offices, unless you publicly announce its contents 

earlier, we plan no further distribution of this report until 7 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 on request. 

In addition, the report will be available at no charge on the GAO Web site 

at http://www.gao.gov. 

Agency Comments 

and Our Evaluation 

Page 25 GAO-08-610 Lessons from Responder Health Programs
If you or your staffs have any questions about this report, please contact 

me at (202) 512-7114 or bascettac@gao.gov. 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 III. 

Cynthia A. Bascetta 

Director, Health Care 

Page 26 GAO-08-610 Lessons from Responder Health Programs
Appendix I: Key Federally Funded WTC Appendix I: Key Federally Funded WTC Health Programs, May 2008

Health Programs, May 2008 

Program 

HHS administering

agency or component 

Implementing agency, 

component, or

organization Eligible population Services provided

New York City Fire 

Department (FDNY) 

World Trade Center 

(WTC) Medical

Monitoring and

Treatment Program 

National Institute for 

Occupational Safety and 

Health (NIOSH) 

FDNY Bureau of Health 

Services 

Firefighters and

emergency medical 

service technicians 

• Initial screening

• Follow-up medical 

monitoring 

• Treatment of WTCrelated physical 

and mental health 

conditions 

New York/New Jersey 

(NY/NJ) WTC 

Consortium 

NIOSH Five clinical centers, one of 

which, the Mount Sinai-Irving

J. Selikoff Center for 

Occupational and 

Environmental Medicine, also 

serves as the consortium’s 

Data and Coordination 

Center 

All responders, 

excluding FDNY 

firefighters and

emergency medical 

service technicians and 

current federal 

employees.a

 

• Initial screening

• Follow-up medical 

monitoring 

• Treatment of WTCrelated physical 

and mental health 

conditions 

WTC Federal 

Responder Screening 

Program 

NIOSHbFederal Occupational Health 

Services (FOH) 

Current federal 

employees who 

responded to the WTC 

attack in an official 

capacity 

• Onetime screening 

• Referrals to 

employee 

assistance 

programs and 

specialty diagnostic 

servicesc

WTC Health Registry Agency for Toxic 

Substances and Disease 

Registry (ATSDR) 

New York City (NYC) 

Department of Health and 

Mental Hygiene

Responders and people 

living or attending school 

in the area of the WTC 

or working or present in 

the vicinity on

September 11, 2001 

• Long-term 

monitoring through 

periodic surveys 

Source: GAO analysis of information from NIOSH, ATSDR, FOH, FDNY, NY/NJ WTC Consortium, and NYC Department of Health and

Mental Hygiene. 

Note: Some of these federally funded programs have also received funds from the American Red 

Cross and other private organizations. In addition to the four programs listed in this table, two smaller 

programs, the Police Organization Providing Peer Assistance (POPPA) program and Project COPE, 

have received federal funding to provide mental health services through hotline, counseling, and 

referral services to NYC Police Department employees and their family members. POPPA and 

Project COPE are private programs that operate independently of the NYC Police Department. 

a

In February 2006, the HHS Assistant Secretary for Preparedness and Response (ASPR) and NIOSH 

reached an agreement to have former federal employees screened by the NY/NJ WTC Consortium. 

b

Until December 26, 2006, ASPR was the administrator. 

c

FOH 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. 

Page 27 GAO-08-610 Lessons from Responder Health Programs
Appendix II: Comments from the Department Appendix II: Comments from the Department of Health and Human Services 

of Health and Human Services 

Page 28 GAO-08-610 Lessons from Responder Health Programs
Appendix II: Comments from the Department 

of Health and Human Services 

Page 29 GAO-08-610 Lessons from Responder Health Programs
Appendix II: Comments from the Department 

of Health and Human Services 

Page 30 GAO-08-610 Lessons from Responder Health Programs
Appendix III: GAO Contact and Staff Acknowledgments 

Page 31 GAO-08-610

Appendix III: GAO Contact and Staff 

Acknowledgments 

GAO Contact Cynthia A. Bascetta, (202) 512-7114 or bascettac@gao.gov

In addition to the contact named above, Helene F. Toiv, Assistant Director; 

George Bogart; Hernan Bozzolo; Frederick Caison; Anne Dievler; and 

Roseanne Price made key contributions to this report. 

Acknowledgments 

Lessons from Responder Health Programs
Related GAO Products 

Page 32 GAO-08-610

Related GAO Products 

September 11: Improvements Still Needed in Availability of Health 

Screening and Monitoring Services for Responders outside the New York 

City Area. GAO-08-429T. Washington, D.C.: January 22, 2008. 

September 11: Improvements Needed in Availability of Health Screening 

and Monitoring Services for Responders. GAO-07-1229T. Washington, 

D.C.: September 10, 2007. 

September 11: HHS Needs to Ensure the Availability of Health Screening 

and Monitoring for All Responders. GAO-07-892. Washington, D.C.: 

July 23, 2007.

September 11: HHS Has Screened Additional Federal Responders for 

World Trade Center Health Effects, but Plans for Awarding Funds for 

Treatment Are Incomplete. GAO-06-1092T. Washington, D.C.: 

September 8, 2006. 

September 11: Monitoring of World Trade Center Health Effects Has 

Progressed, but Program for Federal Responders Lags Behind. 

GAO-06-481T. Washington, D.C.: February 28, 2006. 

September 11: Monitoring of World Trade Center Health Effects Has 

Progressed, but Not for Federal Responders. GAO-05-1020T. Washington,

D.C.: September 10, 2005. 

September 11: Health Effects in the Aftermath of the World Trade Center

Attack. GAO-04-1068T. Washington, D.C.: September 8, 2004. 

(290578) Lessons from Responder Health Programs
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