September 11: HHS Needs to Develop a Plan That Incorporates Lessons from the Responder Health Programs
Published: 2008-05-30T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: 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.
section_title: What GAO Found
paragraphs: 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.

section_title: Letter
paragraphs: 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. 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)—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, 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—and their progress in providing services to  responders. In the course of this previous work, we found that HHS had  problems ensuring the availability of screening and monitoring services for  all responders. 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 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), the Centers for Disease Control and Prevention’s  (CDC) National Institute for Occupational Safety and Health (NIOSH), the  Agency for Toxic Substances and Disease Registry (ATSDR), and the  Federal Occupational Health Services (FOH). We also interviewed  experts from HHS’s National Institute of Mental Health (NIMH) and the  National Institute of Environmental Health Sciences (NIEHS), 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.
subsections: section_title: Background
paragraphs: 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.
subsections: section_title: Overview of WTC Health Programs
paragraphs: Following the attack on the WTC, the Congress appropriated  approximately $8.8 billion to FEMA, over several years, for response and  recovery activities. 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. The Congress made additional appropriations to CDC  available for the same purpose in fiscal years 2007 and 2008. 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. 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; HHS’s WTC Federal Responder  Screening Program; and the WTC Health Registry. 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. (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. 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, 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.
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. 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. 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. 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. Commonly reported  mental health effects among responders and other affected individuals  included symptoms associated with post-traumatic stress disorder (PTSD),  depression, and anxiety. Behavioral health effects such as increased  alcohol and tobacco use were also reported.
In previous reports we noted limitations of the WTC health programs and  problems with their implementation. 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.
section_title: Administrative and Legal Framework for HHS’s Disaster Response Activities
paragraphs: 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. 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. 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.
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.
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. 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.
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. These personnel  include members of the National Disaster Medical System (NDMS).
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.
section_title: Five Important Lessons Can Be Drawn from the Experience of the WTC Health Programs
paragraphs: 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. 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. 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 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. 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. 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. 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 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.
section_title: HHS Has Taken Steps to Facilitate Responder Registration, but Has Not Developed a Plan for Responder Health Programs
paragraphs: 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.
subsections: section_title: HHS Has Taken Some Steps to Ensure That Responders Are Registered Following a Disaster, but These Efforts Are Incomplete
paragraphs: 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) 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. 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.
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.
section_title: HHS Has Not Developed a Plan That Incorporates the Lessons from the WTC Health Programs
paragraphs: 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.
section_title: Conclusions
paragraphs: 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.
section_title: Recommendation for Executive Action
paragraphs: 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.
section_title: Agency Comments and Our Evaluation
paragraphs: 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.
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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.
section_title: Appendix I: Key Federally Funded WTC Health Programs, May 2008
paragraphs: National Institute for  Occupational Safety and  Health (NIOSH)
All responders,  excluding FDNY  firefighters and  emergency medical  service technicians and  current federal  employees.
Federal Occupational Health  Services (FOH)
Agency for Toxic  Substances and Disease  Registry (ATSDR)
Until December 26, 2006, ASPR was the administrator.
section_title: Appendix II: Comments from the Department of Health and Human Services
section_title: Appendix III: GAO Contact and Staff Acknowledgments
subsections: section_title: Acknowledgments
paragraphs: 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.
section_title: Related GAO Products
paragraphs: 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.