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Report to Congressional Requesters: 

United States Government Accountability Office: 
GAO: 

May 2008: 

September 11: 

HHS Needs to Develop a Plan That Incorporates Lessons from the 
Responder Health Programs: 

GAO-08-610: 

GAO Highlights: 

Highlights of GAO-08-610, a report to congressional requesters. 

Why GAO Did This Study: 

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 Found: 

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. 

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. 

To view the full product, including the scope and methodology, click on 
[hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-08-610]. For more 
information, contact Cynthia A. Bascetta at (202) 512-7114 or 
bascettac@gao.gov. 

[End of section] 

Contents: 

Letter: 

Results in Brief: 

Background: 

Five Important Lessons Can Be Drawn from the Experience of the WTC 
Health Programs: 

HHS Has Taken Steps to Facilitate Responder Registration, but Has Not 
Developed a Plan for Responder Health Programs: 

Conclusions: 

Recommendation for Executive Action: 

Agency Comments and Our Evaluation: 

Appendix I: Key Federally Funded WTC Health Programs, May 2008: 

Appendix II: Comments from the Department of Health and Human Services: 

Appendix III: GAO Contact and Staff Acknowledgments: 

Related GAO Products: 

Table: 

Table 1: Services Provided to Responders through WTC Health Programs as 
of December 31, 2007: 

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: 

[End of section] 

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.[Footnote 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) 
[Footnote 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,[Footnote 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 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 programs[Footnote 4]--and their progress in providing 
services to responders.[Footnote 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.[Footnote 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 states[Footnote 7] 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 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),[Footnote 8] the Centers for Disease 
Control and Prevention's (CDC) National Institute for Occupational 
Safety and Health (NIOSH),[Footnote 9] the Agency for Toxic Substances 
and Disease Registry (ATSDR),[Footnote 10] and the Federal Occupational 
Health Services (FOH).[Footnote 11] We also interviewed experts from 
HHS's National Institute of Mental Health (NIMH)[Footnote 12] and the 
National Institute of Environmental Health Sciences (NIEHS),[Footnote 
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 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. 

Results in Brief: 

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. 

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 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. 

Background: 

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. 

Overview of WTC 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.[Footnote 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.[Footnote 15] The Congress made additional 
appropriations to CDC available for the same purpose in fiscal years 
2007 and 2008.[Footnote 16] Federal funds appropriated or awarded for 
the WTC health programs from October 2001 through December 2007 have 
totaled about $369.2 million. 

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.[Footnote 17] The four programs are the FDNY WTC 
Medical Monitoring and Treatment Program; the NY/NJ WTC Consortium, 
which comprises five clinical centers in the NY/NJ area;[Footnote 18] 
HHS's WTC Federal Responder Screening Program; and the WTC Health 
Registry.[Footnote 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.[Footnote 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 responders residing outside the NYC 
metropolitan area.[Footnote 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,[Footnote 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: Firefighters; 
Initial screening examination[A]: 14,620; 
Follow-up monitoring examination[B]: 17,569; 
Physical health treatment[C]: 2,456; 
Mental health treatment[D]: 2,453. 

Responder category: Workers and volunteers; 
Initial screening examination[A]: 22,748; 
Follow-up monitoring examination[B]: 11,315; 
Physical health treatment[C]: 7,288; 
Mental health treatment[D]: 3,131. 

Responder category: Nonfederal responders residing outside NYC area; 
Initial screening examination[A]: 818; 
Follow-up monitoring examination[B]: 176; 
Physical health treatment[C]: 70; 
Mental health treatment[D]: 70. 

Responder category: Federal responders; 
Initial screening examination[A]: 1,355; 
Follow-up monitoring examination[B]: Not applicable[E]; 
Physical health treatment[C]: Not applicable[E]; 
Mental health treatment[D]: Not applicable[E]. 

Responder category: Total; 
Initial screening examination[A]: 39,541; 
Follow-up monitoring examination[B]: 29,060; 
Physical health treatment[C]: 9,814; 
Mental health treatment[D]: 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. 

[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. 

[End of table] 

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.[Footnote 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.[Footnote 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.[Footnote 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.[Footnote 
26] Commonly reported mental health effects among responders and other 
affected individuals included symptoms associated with post-traumatic 
stress disorder (PTSD), depression, and anxiety.[Footnote 27] 
Behavioral health effects such as increased alcohol and tobacco use 
were also reported.[Footnote 28] 

In previous reports we noted limitations of the WTC health programs and 
problems with their implementation.[Footnote 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.[Footnote 30] In December 2004, DHS issued the National Response 
Plan (NRP), which detailed missions, policies, structures, and 
responsibilities of federal agencies for 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.[Footnote 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.[Footnote 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.[Footnote 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 Health Support Annex. 
[Footnote 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.[Footnote 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.[Footnote 36] These personnel include members of the National 
Disaster Medical System (NDMS).[Footnote 37] 

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.[Footnote 38] 

Five Important Lessons Can Be Drawn from the Experience of the WTC 
Health Programs: 

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. 

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.[Footnote 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 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.[Footnote 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 incidence[Footnote 41] 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 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. 
[Footnote 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.[Footnote 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. 

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.[Footnote 
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 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. 

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 
Foundation[Footnote 45] 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. 

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 
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. 

HHS Has Taken Steps to Facilitate Responder Registration, but Has Not 
Developed a Plan for 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 department-level 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. 

HHS Has Taken Some Steps to Ensure That Responders Are Registered 
Following a Disaster, but These Efforts Are Incomplete: 

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. 

In October 2005, ATSDR established a contract with Research Triangle 
Institute International (RTI)[Footnote 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.[Footnote 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 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. 
[Footnote 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 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. 

Conclusions: 

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. 

Recommendation for Executive Action: 

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. 

Agency Comments and Our Evaluation: 

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 [hyperlink, 
http://www.gao.gov]. 

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. 

Signed by: 

Cynthia A. Bascetta: 
Director, Health Care: 

[End of section] 

Appendix I: Key Federally Funded WTC Health Programs, May 2008: 

Program: New York City Fire Department (FDNY) World Trade Center (WTC) 
Medical Monitoring and Treatment Program; 
HHS administering agency or component: National Institute for 
Occupational Safety and Health (NIOSH); 
Implementing agency, component, or organization: FDNY Bureau of Health 
Services; 
Eligible population: Firefighters and emergency medical service 
technicians; 
Services provided: 
* Initial screening; 
* Follow-up medical monitoring; 
* Treatment of WTC-related physical and mental health conditions. 

Program: New York/New Jersey (NY/NJ) WTC Consortium; 
HHS administering agency or component: NIOSH; 
Implementing agency, component, or organization: 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; 
Eligible population: All responders, excluding FDNY firefighters and 
emergency medical service technicians and current federal 
employees.[A]; 
Services provided: 
* Initial screening; 
* Follow-up medical monitoring; 
* Treatment of WTC-related physical and mental health conditions. 

Program: WTC Federal Responder Screening Program; 
HHS administering agency or component: NIOSH[B]; 
Implementing agency, component, or organization: Federal Occupational 
Health Services (FOH); 
Eligible population: Current federal employees who responded to the WTC 
attack in an official capacity; 
Services provided: 
* Onetime screening; 
* Referrals to employee assistance programs and specialty diagnostic 
services[C]. 

Program: WTC Health Registry; 
HHS administering agency or component: Agency for Toxic Substances and 
Disease Registry (ATSDR); 
Implementing agency, component, or organization: New York City (NYC) 
Department of Health and Mental Hygiene; 
Eligible population: Responders and people living or attending school 
in the area of the WTC or working or present in the vicinity on 
September 11, 2001; 
Services provided: 
* 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. 

[End of table] 

[End of section] 

Appendix II: Comments from the Department of Health and Human Services: 

Department Of Health & Human Services: 
Office of the Assistant Secretary for Legislation: 
Washington, DC 20201: 

May 19, 2008: 

Cynthia A. Bascetta: 
Director, Health Care: 
U.S. Government Accountability Office: 
441 G Street, NW: 
Washington, DC 20548: 

Dear Ms. Bascetta: 

Enclosed are he Department's comments on the U.S. Government 
Accountability Office's (GAO) draft report entitled: "September 11: HHS 
Needs to Develop a Plan that Incorporates Lessons from the Responder 
Health Programs" (GAO 08-610). 

The Department appreciates the opportunity to review and comment on 
this report before its publication. 

Sincerely, 

Signed by: 

Jennifer R. Luong, for: 
Vincent Ventimiglia, Jr. 
Assistant Secretary for Legislation: 

Attachment: 

Comments Of The Department Of Health And Human Services (HHS) On The	
Government Accountability Office's (GAO) Draft Report Entitled HHS 
Needs To Develop A Plan That Incorporates Lessons From The Responder 
Health Programs (GAO 08-610): 

When the Pandemic and All-Hazards Preparedness Act (PAHPA) was enacted 
to amend the Public Health Service Act in December 2006, the Secretary 
of Health and Human Services (HHS) was tasked with leading the Federal 
public health and medical response to public health emergencies and 
incidents covered by the National Response Framework. PAHPA also 
established the position of the Assistant Secretary for Preparedness 
and Response (ASPR) to carry out functions, subject to the authority of 
the Secretary, related to public health and medical preparedness and 
response for public health emergencies. Among other functions, PAHPA 
tasks the ASPR with registering, credentialing, organizing, training, 
equipping, and having the authority to deploy federal public health and 
medical personnel under the authority of the Secretary. To support this 
function, ASPR is developing an objective methodology to create a 
system intended to address the needs of future disaster responders. 

PAHPA also tasks ASPR to coordinate with relevant federal officials to 
ensure integration of federal preparedness and response activities for 
public health emergencies, with promoting improved emergency medical 
services medical direction, system integration, research, uniformity of 
data collection, treatment protocols, and policies with regard to 
public health emergencies, and with carrying out other duties 
determined appropriate by the Secretary ASPR has coordinated efforts to 
address the needs of disaster and emergency responders with CDC, 
CDC/NIOSH, OSHA, FOH, and OSG/OFRD. In March 2008, ASPR tasked its 
National Disaster Medical System (NDMS) Office of the Chief Medical 
Officer (OCMO) with building on these efforts and creating a Center for 
Responder Safety, Health, and Risk Management. Among other things, the 
NDMS is charged with carrying out ongoing activities necessary to 
prepare for the provision of services to respond to the needs of 
victims of a public health emergency when it is activated. 

The NIOSH Project Plan was developed late 2007 and approved by the 
NIOSH Director February 2008. At that time, NIOSH staff began the 
process of researching the tools and programs currently available to 
meet the needs of responders during a disaster. Recommendations and 
guidance were intended to reach a larger audience than HHS alone. 
Meetings were held with the National Institute of Environmental Health 
Sciences (NIEHS), Office of the Assistant Secretary for Preparedness 
and Response (ASPR), United States Army Corps of Engineers, and other 
partners. In conjunction with CDC's Disaster Surveillance Working 
Group, a workshop will be held for State health department 
representatives in May 2008. The workshop is designed to discuss 
disaster surveillance, and includes a one-day breakout session on 
responder safety and health. NIOSH, in partnership with NIEHS, will be 
sponsoring this breakout session to help determine needs at the State 
level. NIOSH staff will also conduct a focus group with risk managers 
with an interest in responder safety and health in June 2008 to get a 
different perspective on the Project Plan. These are the first steps 
taken in determining available tools, where opportunity exists to build 
on current infrastructure, and determine where the largest gaps exist. 
NIOSH staff plan to discuss the Rapid Response Registry and other 
surveillance tools with ATSDR. 

There may be opportunity to build on the fundamentals of this registry 
to better capture the increased detail of occupational and exposure 
information necessary for a responder population. 

The WTC health program is a unique instance where NIOSH was designated 
to lead health programs. This is not a usual mission of NIOSH. As such, 
when the NIOSH Project Plan was developed, it was not intended to 
include guidance on treatment referral processes or methods of ensuring 
comparable treatment services across all responder groups, although 
these topics should be included in any overall HHS plan. 

Finally, with respect to implications that could be drawn from the 
report that monitoring and treatment, including referral for treatment, 
are appropriate each time a Stafford Act declaration occurs, we note 
that neither the Congress nor the Executive Branch has determined that 
long-term monitoring and treatment will be appropriate each time a 
disaster declaration is made; and indeed the circumstances for such 
events will vary enormously. In fact, the HHS authorities under the 
SAFE Port Act of 2006 allow for case-by-case consideration of the 
circumstances of each disaster. 

[End of section] 

Appendix III: GAO Contact and Staff Acknowledgments: 

GAO Contact: 

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

Acknowledgments: 

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. 

[End of section] 

Related GAO Products: 

September 11: Improvements Still Needed in Availability of Health 
Screening and Monitoring Services for Responders outside the New York 
City Area. [hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-08-429T]. 
Washington, D.C.: January 22, 2008. 

September 11: Improvements Needed in Availability of Health Screening 
and Monitoring Services for Responders. [hyperlink, 
http://www.gao.gov/cgi-bin/getrpt?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. [hyperlink, http://www.gao.gov/cgi-
bin/getrpt?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. [hyperlink, http://www.gao.gov/cgi-bin/getrpt?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. [hyperlink, 
http://www.gao.gov/cgi-bin/getrpt?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. [hyperlink, 
http://www.gao.gov/cgi-bin/getrpt?GAO-05-1020T]. Washington, D.C.: 
September 10, 2005. 

September 11: Health Effects in the Aftermath of the World Trade Center 
Attack. [hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-04-1068T]. 
Washington, D.C.: September 8, 2004. 

[End of section] 

Footnotes: 

[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 private-sector workers and volunteers from New York and 
elsewhere. 

[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. 

[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 work-related injury and illness. 

[10] ATSDR 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. 

[11] FOH provides occupational health and safety services to federal 
agencies located throughout the United States. 

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

[13] NIEHS 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. 

[14] See Consolidated Appropriations Resolution, 2003, Pub. L. No. 108- 
7, 117 Stat. 11, 517; 2002 Supplemental Appropriations Act for Further 
Recovery from and Response to Terrorist Attacks on the United States, 
Pub. L. No. 107-206, 116 Stat. 820, 894; Department of Defense and 
Emergency Supplemental Appropriations for Recovery from and Response to 
Terrorist Attacks on the United States Act, 2002, Pub. L. No. 107-117, 
115 Stat. 2230, 2338; and 2001 Emergency Supplemental Appropriations 
Act for Recovery from and Response to Terrorist Attacks on the United 
States, Pub. L. No. 107-38, 115 Stat. 220-221. 

[15] Department 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). 

[16] In 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). 

[17] Another 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. 

[18] This 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. 

[19] In 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. 

[20] The 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. 

[21] From 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. 

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

[23] See, 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). 

[24] 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). 

[25] K. 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). 

[26] R.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). 

[27] R.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). 

[28] R.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). 

[29] See GAO, September 11: Monitoring of World Trade Center Health 
Effects Has Progressed, but Program for Federal Responders Lags Behind, 
[hyperlink, http://www.gao.gov/cgi-bin/getrpt?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, 
[hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-07-892] (Washington, 
D.C.: July 23, 2007). 

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

[31] Robert 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). 

[32] The NRF became effective March 22, 2008. 

[33] 44 C.F.R. 206.208 (2007). 

[34] The 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. 

[35] In 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, [hyperlink, http://www.gao.gov/cgi-bin/getrpt?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, [hyperlink, http://www.gao.gov/cgi-bin/getrpt?GAO-07-1253T] 
(Washington, D.C.: Sept. 20, 2007). 

[36] Pub. 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. 

[37] Under 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. 

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

[39] There is no definitive count of those who served as responders. 
Estimates have ranged from about 40,000 to about 91,000. 

[40] In addition, some federal agency officials believed that medical 
screening was not necessary for their employees, and some agencies had 
instituted their own screening efforts. 

[41] Incidence is a measure of new cases of disease, illness, or 
condition during a specified time period. 

[42] J.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). 

[43] The WTC Health Registry was designed to conduct epidemiologic 
research. However, the data collected by this program are self-reported 
and not clinically verified. 

[44] See, 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). 

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

[46] RTI is a private corporation that conducts research and provides 
technical assistance to government agencies and businesses. 

[47] ATSDR 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. 

[48] According 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. 

[End of section] 

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