Lessons from the World Trade Center Responder Health Programs

1. Lessons from the World Trade Center Responder Health Programs Cynthia A. Bascetta, George Bogart, Hernan Bozzolo, Frederick Caison, Anne Dievler, Roseanne Price, and Helene F. Toiv

2. Congressional Request • Representative Christopher Shays (R-CT) • Representative Vito J. Fossella (R-NY) • Representative Carolyn B. Maloney (D-NY)

3. Introduction • Thousands of responders to the September 11, 2001, World Trade Center (WTC) disaster have experienced serious physical and mental health problems. • The Department of Health and Human Services (HHS) established programs, in collaboration with local government and private organizations, for screening, monitoring, or treating responders. • Officials involved in the administration and implementation of these programs have derived lessons from their experience that could improve the design of such programs in the future.

4. Research Objectives • Identify lessons from the experience of the WTC health programs • Determine whether HHS has taken actions or developed plans that incorporate the lessons from the WTC health programs.

5. Background Health Effects • Physical Health • Injuries • Respiratory conditions (e.g., sinusitis, asthma, “WTC cough”) • Mental Health • Post-Traumatic Stress Disorder (PTSD) • Depression • Anxiety

6. BackgroundWTC Health Programs • Four key programs receive federal funding to provide screening, monitoring, or treatment services to responders. • FDNY WTC Medical Monitoring and Treatment Program • NY/NJ WTC Consortium • WTC Federal Responder Screening Program • WTC Health Registry • In previous work, GAO noted problems with the implementation of these programs.

7. Background Administrative/Legal Framework for HHS’s Disaster Response Actions • National Response Framework (NRF) • Pandemic and All-Hazards Preparedness Act (PAHPA) • Section 709 of the Security and Accountability for Every Port Act of 2006 (also known as the SAFE Port Act)

8. Methodology & Scope • Conducted interviews with • HHS officials (e.g. ASPR, NIOSH, etc.) • WTC health program officials • Experts in occupational and environmental health • Reviewed documents and reports • Obtained agency comments on draft • Focus: health of responders following a disaster; not prevention

9. Lesson 1:Registering all responders during a response to a disaster could improve implementation of screening and monitoring services • No registry of all responders developed by NYC or federal government during WTC response • Officials subsequently compiled a list of responders—a difficult, time-consuming, costly task that was only partially successful • Affected outreach, hindered planning, and made it difficult to determine incidence and causes of health problems • Applying this lesson could: • Allow officials to contact responders before they scatter, and improve efforts to conduct outreach and plan health services • Provide data for epidemiologic research

10. Lesson 2: Designing and implementing programs to conduct epidemiologic research could improve understanding of health effects and determine the need for monitoring • FDNY WTC program and NY/NJ WTC Consortium established as clinical programs and focused on the health of individual responders. • Programs were not designed to test hypotheses or to conduct comparisons • Limited resources for epidemiologic research • Applying this lesson could: • Improve the ability to scientifically document the health effects of a disaster among responders • Help determine the need for ongoing monitoring

11. Lesson 3: Timely mental health services integrated with physical health services could improve ability to diagnose conditions and prevent progression of mental health conditions • Despite high risk, mental health initially did not receive as much attention as physical health • Mental health initially assessed with short written questionnaire, and when needed, referrals for in-person evaluation • Recognizing seriousness of problems, mental health screening and monitoring services were later expanded • Applying this lesson could: • Prevent mental health conditions from progressing • Improve ability to accurately diagnose and differentiate physical and mental health conditions

12. Lesson 4: Including a treatment referral process in screening and monitoring programs could improve the ability of responders to gain access to needed treatment • WTC program officials said that, before treatment funding became available, it was a challenge to find providers available and willing to treat responders • Responders who carried out cleanup services often did not have health insurance • Construction workers often lost their health insurance when they became too ill to work • Applying this lesson could: • Help responders whose screening or monitoring examination indicated a need for treatment to gain access to needed treatment services

13. Lesson 5: Making comparable services available to all responders could ensure equitable access to services and help ensure collection of consistent and comprehensive data • WTC programs were set up as separate programs • Eligibility and participation in WTC programs were based on the responder’s employer and geographic location • Types of services available and information collected varied by program • Applying this lesson could: • Ensure no group of responders would be unable to obtain certain services on the basis of employer or location • Ensure timely care for conditions and collection of consistent and comprehensive data

14. HHS Actions/Plans • HHS has taken some steps to ensure that responders are registered following a disaster, but these efforts are incomplete • HHS has not developed a department-level plan that incorporates the lessons from the WTC programs

15. HHS’s Actions to Register Responders • Rapid Response Registry (RRR) • Survey instrument that state and local entities can voluntarily adopt to register responders and other individuals exposed to a disaster. • As of February 2008, 21 states had included the RRR survey in their disaster planning. • Interim guidance for postexposure medical screening of workers leaving hurricane disaster recovery areas

16. HHS’s Actions to Register Responders (cont’d.) • New Center for Responder Safety, Health, and Risk Management within the Office of the Assistant Secretary for Preparedness and Response (ASPR) • Center is working to develop a system to register responders, record their health problems, and make referrals, but these efforts are incomplete.

17. HHS Has Not Developed a Department-level Plan for Responder Health Programs • In the absence of a plan, the National Institute for Occupational Safety and Health (NIOSH) has developed a proposal for working with some of the relevant HHS components • NIOSH’s proposal addresses some aspects of the lessons from the WTC programs

18. Conclusions/Policy Significance • Consequences of not having a department-level plan • HHS has not indicated whether its policies and actions following a disaster or emergency would apply the lessons from the WTC programs. • HHS has not described the roles and responsibilities of its components in designing and implementing responder health programs.

19. Conclusions/Policy Significance • Until HHS completes its work to establish a system to register responders and develops a department-level plan, 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.

20. For a copy of the full report • See GAO-08-610 at www.gao.gov