September 11: Monitoring of World Trade Center Health Effects Has Progressed, but Program for Federal Responders Lags Behind
Published: 2006-02-28T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: After the 2001 attack on the World Trade Center (WTC), nearly 3,000 people died and an estimated 250,000 to 400,000 people in the vicinity were affected. An estimated 40,000 people who responded to the disaster--including New York City Fire Department (FDNY) personnel and other government and private-sector workers and volunteers--were exposed to physical and mental health hazards. Concerns remain about the long-term health effects of the attack and about the nation's capacity to plan for and respond to health effects resulting from future disasters. Several federally funded programs have monitored the physical and mental health effects of the WTC attack. These monitoring programs include one-time screening programs and programs that also conduct follow-up monitoring. GAO was asked to assess the progress of these programs and examined (1) federally funded programs implemented by state and local government agencies or private institutions, (2) federally administered programs to monitor the health of federal workers who responded to the disaster in an official capacity, and (3) lessons learned from WTC monitoring programs. GAO reviewed program documents and interviewed federal, state, and local officials and others involved in WTC monitoring programs. This statement updates information GAO provided to Congress on September 10, 2005.
section_title: What GAO Found
paragraphs: Three federally funded monitoring programs implemented by state and local governments or private organizations after the WTC attack, with total funding of about $104 million, have provided initial medical examinations--and in some cases follow-up examinations--to thousands of affected responders to screen for health problems. For example, the FDNY medical monitoring program completed initial screening for over 15,000 firefighters and emergency medical service personnel, and the worker and volunteer program screened over 14,000 other responders. The New York State responder screening program screened about 1,700 state responders before ending its examinations in 2003. These monitoring programs and the WTC Health Registry, with total federal funding of $23 million, have collected information that program officials believe researchers could use to help better understand the health consequences of the attack and improve treatment. Program officials expressed concern, however, that current time frames for federal funding arrangements may be too short to allow for identification of all future health effects. CDC recently received a $75 million appropriation to fund health screening, long-term monitoring, and treatment for WTC responders and is deciding how to allocate these funds. In contrast to the progress made by other federally funded programs, the Department of Health and Human Services' (HHS) program to screen federal workers who were sent by their agencies to respond to the WTC disaster has accomplished little and lags behind. The program--which started in June 2003, about one year later than other WTC monitoring programs--completed screening of 527 of the estimated 10,000 federal workers who responded in an official capacity to the disaster, and in early 2004, examinations were suspended for almost 2 years. The program's limited activity and the exclusion of federal workers from other monitoring programs because of the assumption that they could receive screening examinations through the HHS program may have resulted in many federal responders losing the opportunity to identify and seek treatment for their WTC-related health problems. Officials involved in WTC health monitoring programs cited lessons from their experiences that could help others who may be responsible for designing and implementing health monitoring efforts that follow other disasters, such as Hurricane Katrina. These include the need to quickly identify and contact people affected by a disaster; to monitor for mental health effects, as well as physical injuries and illnesses; and to anticipate when designing disaster-related monitoring efforts that there will likely be many people who require referrals for follow-up care and that handling the referral process may require substantial effort.

section_title: Letter
paragraphs: Thank you for inviting me to participate in today’s hearing to discuss  issues related to the health effects that people continue to experience in  the aftermath of the September 11, 2001, terrorist attack on the World  Trade Center (WTC). My testimony today updates information we  reported to you in September 2005. After the collapse of the WTC  buildings, nearly 3,000 people died, and an estimated 250,000 to 400,000  people who lived, worked, or attended school in the vicinity were affected.  An estimated 40,000 people responded to the disaster, including New York  City Fire Department (FDNY) personnel and other government and  private-sector workers and volunteers from New York and other locations  across the nation. These responders, as they took part in various rescue,  recovery, and cleanup activities in the days, weeks, and months following  the attack, were exposed to numerous physical hazards and environmental  toxins because of the destruction caused by the attack. The magnitude and  unprecedented nature of this event also exposed responders and many  other people to considerable psychological trauma.
Four years after the destruction of the WTC buildings, concerns remain  about the long-term physical and mental health effects of the attack.  Several recent studies of responders report that many of them have high  rates of physical and mental health symptoms, of which respiratory  problems are the most persistent physical effects. While the nature and  severity of a future terrorist attack cannot be predicted, our prior work on  the health effects of the WTC attack, the 2001 anthrax attacks, and  bioterrorism preparedness, as well as reports by other organizations,  highlight the importance of ensuring the nation’s capacity to plan for and  respond to the short- and long-term health consequences likely to result in  the event of a future attack or other disaster, such as the destruction  recently caused by Hurricane Katrina.
As we testified in September 2004, in the aftermath of the WTC attack, five  key federally funded programs were implemented to assess the short-term,  and in some cases long-term, effects on people’s physical and mental  health. These programs include the FDNY WTC Medical Monitoring  Program, WTC Medical Monitoring Program (worker and volunteer  program), New York State responder screening program, WTC Health  Registry, and Department of Health and Human Services’ (HHS) WTC  Federal Responder Screening Program. You asked us to provide  information on the progress of these monitoring programs in September  2005, and to update that information for this hearing. My testimony today  updates the information we reported to you in September 2005 on   (1) progress made by federally funded programs that are implemented by  state and local government agencies or private organizations and were  established to monitor the health of people in the aftermath of the attack,  (2) progress made by federally administered programs established to  monitor the health of federal workers who responded to the disaster in an  official capacity, and (3) lessons from WTC monitoring programs that  could assist those who may be responsible for future disaster-related  health monitoring efforts.
To provide the information we reported in September 2005, we conducted  our work from July through September 2005. We obtained and reviewed  program documents dating from the beginning of the programs, including  grantee progress reports, budget documents, clinical protocols, health  screening and other assessment tools, and selected peer-reviewed articles  based on information collected by WTC monitoring programs. We also  interviewed federal, state, and local officials and others involved in  administering WTC monitoring programs, including officials from HHS and  the Department of Homeland Security (DHS); New York State Department  of Health; New York City Department of Health and Mental Hygiene; and  FDNY. Within HHS, we interviewed officials from the Agency for Toxic  Substances and Disease Registry (ATSDR); the Centers for Disease  Control and Prevention’s (CDC) National Center for Environmental Health  and National Institute for Occupational Safety and Health (NIOSH);  Federal Occupational Health Services (FOH); and the Office of Public  Health Emergency Preparedness (OPHEP). We also obtained information  from the Department of Defense (DOD) and the Department of Justice. We  interviewed medical professionals affiliated with the New York University  School of Medicine, FDNY’s Bureau of Health Services (FDNY-BHS),   Long Island Occupational and Environmental Health Center, Mount Sinai- Irving J. Selikoff Center for Occupational and Environmental Medicine,  Mount Sinai School of Medicine Department of Psychiatry, and the  University of Medicine and Dentistry of New Jersey’s Robert Wood  Johnson Medical School. HHS and New York State officials provided  comments on the information we provided in September 2005, and we  made changes as appropriate. To prepare today’s testimony, we conducted  our work during February 2006 and obtained updated information from  officials at the New York State responder screening program and the WTC  Federal Responder Screening Program. We also obtained updated  information from officials at the WTC Registry about their monitoring  plans. In addition, we obtained information from CDC officials about a   $75 million appropriation the agency received in fiscal year 2006 to fund  health services for WTC responders. For the information in this statement,  we relied on data provided by agency officials and contained in  government publications and did not independently verify the data we  obtained. In our judgment the reliability of the information we obtained  was adequate for our purposes. We conducted our work in accordance  with generally accepted government auditing standards.
In summary, three federally funded programs implemented by state and  local governments or private organizations in the aftermath of the WTC  attack, with total federal funding of about $104 million, have provided  initial medical examinations—and in some cases follow-up  examinations—to thousands of affected responders to screen for health  problems. For example, the FDNY program completed initial screening for  over 15,000 firefighters and emergency medical service personnel, and the  worker and volunteer program has screened over 14,000 other responders.  The New York State program screened about 1,700 state responders  before ending its screening examinations in November 2003; in general,  the program did not inform the approximately 9,800 state responders  when they became eligible to participate in the worker and volunteer  program in February 2004. Worker and volunteer program officials are  working with state employee unions to inform state workers of their  eligibility. These three programs and the WTC Health Registry, with total  federal funding of $23 million, have collected information that monitoring  program officials believe could be used by researchers to help better  understand the health consequences of the attack and improve treatment,  such as by identifying which types of treatment are effective for specific  conditions. Officials of programs that plan to conduct long-term health  monitoring are concerned that the time frames of current federal funding  arrangements may be too short to allow for identification of all the health  effects that participants may eventually experience. In January 2006, CDC  received a $75 million appropriation to fund baseline health screening,  long-term monitoring, and treatment for WTC responders, and is in the  process of deciding how to allocate these funds and how long the  allocated funds will be available for each program that receives funding.
In contrast to the progress made by federally funded programs  implemented by state and local governments or private organizations, the  program that HHS implemented in June 2003 to screen federal workers  who were sent by their agencies to respond to the WTC disaster has lagged  behind and accomplished little. Through March 2004, the program—which  started later than other WTC monitoring programs—completed screenings  of 394 of the estimated 10,000 federal workers who responded in an  official capacity to the disaster and were not eligible for any other WTC  health monitoring program. HHS placed the program on hold in January  2004, when it stopped scheduling new examinations, because it wanted to  resolve several operational issues. The program resumed providing  examinations for current federal workers in December 2005, and had  completed 133 additional examinations as of early February 2006. While  examinations have not resumed for WTC responders who are no longer  federal employees, OPHEP recently executed an agreement with NIOSH to  arrange for the worker and volunteer program to provide examinations to  these WTC responders. In addition to the HHS program, we identified two  federal agencies that, in the aftermath of the WTC attack, have  implemented programs to assess the health of their own employees who  responded to the disaster.
Officials involved in WTC health monitoring programs cited lessons from  their experiences that could help others who may be responsible for  designing and implementing disaster-related health monitoring efforts in  the future. These include the need to quickly identify and contact people  affected by a disaster; to monitor for mental health effects, as well as the  more obvious physical injuries and illnesses; and when developing health  monitoring efforts in the wake of disasters, to anticipate that there will  likely be many people who require referrals for further diagnostic and  treatment services and that handling the referral process may require a  substantial level of effort.
subsections: section_title: Background
paragraphs: When the WTC buildings collapsed on September 11, 2001, an estimated  250,000 to 400,000 people were immediately exposed to a noxious mixture  of dust, debris, smoke, and potentially toxic contaminants in the air and on  the ground, such as pulverized concrete, fibrous glass, particulate matter,  and asbestos. Those affected included people residing, working, or  attending school in the vicinity of the WTC and thousands of emergency  response workers. Also affected were the estimated 40,000 responders  who were involved in some capacity in the days, weeks, and months that  followed, including personnel from many government agencies and private  organizations as well as other workers and volunteers.
A wide variety of physical and mental health effects have been observed  and reported among people who were involved in rescue, recovery, and  cleanup operations and among those who lived and worked in the vicinity  of the WTC. 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, and hundreds had  to end their firefighting careers because of WTC-related respiratory  illnesses. The most commonly reported mental health effects among  responders and others were symptoms associated with posttraumatic  stress disorder—an often debilitating disorder that can develop after a  person experiences or witnesses a traumatic event, and which may not  develop for months or years after the event. Behavioral effects such as  alcohol and tobacco use and difficulty coping with daily responsibilities  were also reported.
Several federally funded programs monitor the health of people who were  exposed to the WTC attack and its aftermath. The monitoring programs  vary in such aspects as eligibility requirements, methods used for  collecting information about people’s health, and approaches for offering  referrals. Of the four programs that offer medical examinations to WTC  responders, the only one that is open to federal workers who responded to  the disaster in an official capacity is the one implemented by HHS. (See  table 1.) None of the monitoring programs receives federal funds to  provide clinical treatment for health problems that are identified.
The majority of federal funding for these monitoring programs was  provided by DHS’s Federal Emergency Management Agency (FEMA), as  part of the approximately $8.8 billion in federal assistance that the  Congress appropriated to FEMA for response and recovery activities after  the WTC disaster. One appropriation in 2003 specifically authorized  FEMA to use a portion of its WTC-related funding for screening and long- term monitoring of emergency services and rescue and recovery  personnel. Generally, however, FEMA may fund only short-term care  after a disaster, such as emergency medical services, and not ongoing  clinical treatment.
FEMA entered into interagency agreements with HHS to fund most of  these health monitoring programs. HHS is the designated lead agency for  the public health and medical support function under the National  Response Plan and is responsible for coordinating the medical resources  of all federal departments and agencies. HHS’s OPHEP coordinates and  directs HHS’s emergency preparedness and response program.
section_title: Health Monitoring Programs Implemented by State and Local Governments or Private Organizations Have Made Progress
paragraphs: Three federally funded programs implemented by state and local  governments or private organizations, with total federal funding of about  $104 million—the FDNY WTC Medical Monitoring Program, WTC Medical  Monitoring Program (worker and volunteer program), and New York State  responder screening program—have made progress in monitoring the  physical and mental health of people affected by the WTC attack. Federal  employees who responded to the WTC disaster in an official capacity were  not eligible for these programs because it was expected that another  program would be developed for them. The New York State program  stopped providing health screening examinations in November 2003, and  in February 2004 state workers became eligible for initial or continued  monitoring through the worker and volunteer program. The state program,  in general, did not inform state responders that they were eligible to  participate in the worker and volunteer program. Worker and volunteer  program officials are working with state employee unions to inform state  workers of their eligibility. All three programs and the WTC Health  Registry, with total federal funding of $23 million, have collected  information that could contribute to better understanding of the health  consequences of the attack and improve health care for affected  individuals. Officials from the FDNY, worker and volunteer, and WTC  Health Registry programs are concerned that federal funding for their  programs could end before sufficient monitoring occurs to identify all  long-term health problems related to the WTC disaster. In January 2006,  CDC received a $75 million appropriation to fund baseline health  screening, long-term monitoring, and treatment for WTC responders. CDC  officials are in the process of deciding how they are going to allocate these  funds among programs and how long the allocated funds will be available  for each program that receives funding.
subsections: section_title: Three WTC Monitoring Programs Provided Medical Examinations to Identify Responders’ Health Problems
paragraphs: Three federally funded programs implemented by state and local  governments or private organizations, with total funding of about   $104 million, have provided medical examinations to identify physical and  mental health problems related to the WTC attack. (See table 2.) Two of  these programs—the FDNY WTC Medical Monitoring Program and the  worker and volunteer program—are tracking the health of WTC rescue,  recovery, and cleanup workers and volunteers over time. The third  program, the New York State responder screening program, offered one- time screening examinations to state employees, including National Guard  personnel, who participated in WTC rescue, recovery, and cleanup work.  Federal employees who responded to the WTC disaster in an official  capacity were not eligible for any of these programs because it was  expected that another program would be developed for them.
The FDNY program completed initial screening for over 15,000 firefighters  and emergency medical service personnel, and the worker and volunteer  program completed initial screening for over 14,000 other responders. In  both programs, screenings include physical examinations, pulmonary  function tests, blood and urine analysis, a chest Xray, and questionnaires  on exposures and mental health issues. Both programs have begun to  conduct follow-up examinations of participants and continue to accept  new enrollees who desire initial screening. Current plans are to conduct a  total of three follow-up examinations for each participant by 2009. As part  of their federally funded activities, both programs provide referrals for  participants who require treatment. FDNY employees and retirees can  obtain treatment and counseling services from the FDNY Bureau of Health  Services and the FDNY Counseling Services Unit, or they can use their  health insurance to obtain treatment and counseling services elsewhere.  The worker and volunteer program also provides referrals for its  participants, including referrals to programs funded by the American Red  Cross and other nonprofit organizations.
The New York State program provided health screenings to about 1,700 of  the estimated 9,800 state workers and National Guard personnel who  responded to the WTC disaster. Officials sent letters to all state responders  to inform them about the program and their eligibility for it. For each  participant, the screening included a health and exposure questionnaire  and physical and pulmonary examinations. Participants who required  further evaluation or treatment after screening were told to follow up with  their personal physician or a specialist. The program stopped screening  participants in November 2003, in part because the number of responders  requesting examinations was dwindling, and no follow-up examinations  are planned.
In February 2004, worker and volunteer program officials began to allow  New York State responders to participate in that monitoring program. The  officials determined that the worker and volunteer program would have  sufficient funding to accommodate state workers who want to join the  program. The state program did not notify the 9,800 state responders,  including the approximately 1,700 workers it had screened that they were  now eligible for continued monitoring from the worker and volunteer  program. State program officials relayed this development only to those  state responders who inquired about screening or monitoring  examinations following the decision to permit state responders to  participate in the worker and volunteer program. However, officials from  the worker and volunteer program told us that they are working with state  employee unions to inform state workers about their eligibility for the  worker and volunteer program. For example, starting in November 2005,  letters have been sent to union members telling them about the program  and how they can enroll in it. According to worker and volunteer program  officials, as of February 2006, 13 state workers who responded to the WTC  disaster in an official capacity had received examinations from the worker  and volunteer program, and as of mid-February 2006, 9 additional state  workers had registered to obtain examinations through this program.  Worker and volunteer program officials told us that any state worker that  had been screened by the state program would need to receive a new  baseline examination through the worker and volunteer program, because  the screening data collected by the state program differ from the data  collected by the worker and volunteer program. For example, the worker  and volunteer program offers a breathing test not provided by the state  program.
section_title: Programs Provide Data for WTC-Related Health Research
paragraphs: In addition to providing medical examinations, these three programs—the  FDNY program, the worker and volunteer program, and the New York  State program—have collected information for use in scientific research to  better understand the health consequences of the WTC attack and other  disasters. A fourth program, the WTC Health Registry, includes health and  exposure information obtained through interviews with participants; it is  designed to track participants’ health for 20 years and to provide data on  the long-term health consequences of the disaster (see table 2). Physicians  who evaluate and treat WTC responders told us they expect that research  on health effects from the disaster will not only help researchers  understand the health consequences, but also provide information on  appropriate treatment options for affected individuals.
Both the FDNY program and the worker and volunteer program have been  the basis for published research articles on the health of WTC responders.  For example, the FDNY program reported on the injuries and illnesses  experienced by firefighters and emergency medical service workers after  responding to the attack. In addition, the worker and volunteer program  published information on the physical and mental health of responders in  2004. Officials from both programs plan to publish additional findings as  they track participants’ health over time. Although the New York State  program has stopped offering examinations, program officials are  continuing to analyze data from the program with plans for eventual  publication.
The WTC Health Registry program has collected health information  through interviews with responders, people living or attending school in  the vicinity of the WTC site, and people working or present in the vicinity  on September 11, 2001. The registry program, with total federal funding of  $23 million, completed enrollment and conducted interviews with over  71,000 participants by November 2004. Officials updated contact  information for all participants in 2005, and they plan to start conducting  the first follow-up health survey of participants in late March 2006.  Registry officials would like to conduct subsequent follow-up surveys  every 2 years until about 2023—20 years after the program began in 2003— but have not yet secured funding for long-term monitoring.
The registry is designed to provide a basis for research to evaluate the  long-term health consequences of the disaster. It includes contact  information for people affected by the WTC attack, information on  individuals’ experiences and exposures during the disaster, and  information on their health. In November 2004, registry officials published  preliminary results on the health status of registry participants, and  officials expect to submit several research papers for publication within  the next year. In addition, in May 2005, registry officials published  guidelines for allowing registry information to be used in scientific  research, and as of February 2006, they approved three proposals for  external research projects that use registry information. These proposals  include two studies of building evacuations and a study of psychological  responses to terrorism.
section_title: Program Officials Are Concerned That Current Federal Funding Arrangements Will End before Needed Monitoring Is Complete
paragraphs: Officials from the FDNY, worker and volunteer, and WTC Health Registry  programs are concerned that current time frames for federal funding  arrangements for programs designed to track participants’ health over  time may be too short to allow for identification of all the health effects  that may eventually develop. ATSDR’s 5-year cooperative agreement with  the New York City Department of Health and Mental Hygiene to support  the WTC Health Registry went into effect April 30, 2003, and extends  through April 29, 2008. Similarly, NIOSH awarded 5-year grants in   July 2004 to continue the FDNY and worker and volunteer programs  through mid-2009; the programs had begun in 2001 and 2002, respectively.  Health experts involved in these monitoring programs, however, cite the  need for long-term monitoring of affected groups because some possible  health effects, such as cancer, may not appear until decades after a person  has been exposed to a harmful agent. They noted that long-term  monitoring could result in earlier detection and treatment of cancers that  might develop. Health experts also told us that monitoring is important for  identifying and assessing the occurrence of newly identified conditions,  such as WTC cough, and chronic conditions, such as asthma.
section_title: CDC Is in Process of Deciding How to Distribute New Funds for Monitoring and Treating WTC Responders
paragraphs: In January 2006, CDC received a $75 million appropriation for purposes  related to the September 11, 2001, terrorist attacks. It is available to fund  baseline screening, long-term monitoring, and health care treatment of  emergency services and recovery personnel who responded to the WTC  disaster. CDC is required to give first priority to funding baseline, follow- up screening, long-term medical health monitoring, or treatment programs  implemented by the worker and volunteer program, the FDNY Medical  Monitoring Program, the WTC Health Registry, the New York Police  Foundation’s Project COPE, and the Police Organization Providing Peer  Assistance of New York City. CDC is required to give second priority to  funding similar programs that are coordinated by other organizations that  are working with New York State and New York City. The programs that  may qualify for secondary consideration are not specified in the law.
In mid-February 2006, CDC officials told us that they were engaged in  discussions with congressional stakeholders and the organizations  specified in the law to help the agency decide how to spend the  appropriated funds. Officials said that to aid their decisionmaking they  were also consulting with private philanthropic organizations, including  the American Red Cross, to learn more about the grant funds the  organizations have provided to support the recovery needs of people  affected by the WTC attack. CDC officials told us that they plan to first  decide how they will allocate funds among screening, monitoring, and  treatment programs and then make other decisions, such as how long the  allocated funds will be available for each program. They said that they  anticipated reaching a decision about the allocation of the funds by the  end of February 2006, but did not know when they would reach other  decisions.
section_title: HHS’s Program for Screening Federal Responders Has Accomplished Little
paragraphs: HHS’s OPHEP established the WTC Federal Responder Screening Program  to provide medical screening examinations for an estimated 10,000 federal  workers who responded to the WTC disaster in an official capacity and  were not eligible for any other medical monitoring program. OPHEP did  not initially develop a comprehensive list of federal responders who were  eligible for the program. The program began in June 2003—about a year  later than other monitoring programs—and had completed screenings for  394 workers through March 2004. No additional examinations were  provided until the program resumed in December 2005, because OPHEP  officials had temporarily suspended new examinations until they could  resolve several operational issues. The program resumed conducting  examinations for current federal workers in December 2005, and  completed 133 additional examinations for current federal workers as of  early February 2006. The examination process has not resumed for WTC  responders who are no longer federal employees, but OPHEP recently  executed an agreement with NIOSH to arrange for the worker and  volunteer program to provide examinations to these WTC responders. We  also identified two additional federal agencies that established screening  programs for their own personnel who responded to the disaster.
subsections: section_title: HHS Program Screened Few Federal Workers and Recently Started Conducting Examinations after a Hiatus of Almost 2 Years
paragraphs: HHS’s WTC Federal Responder Screening Program was established to  provide free voluntary medical screening examinations for an estimated  10,000 federal workers whom their agencies sent to respond to the WTC  disaster from September 11, 2001, through September 10, 2002, and who  were not eligible for any other monitoring program. FEMA provided   $3.74 million through an interagency agreement with HHS’s OPHEP for the  purpose of developing and implementing the program. OPHEP entered  into an agreement with HHS’s FOH to schedule and conduct the screening  examinations.
The launching of the federal responder screening program lagged behind  the implementation of other federally funded monitoring programs for  WTC responders. For example, the medical screening program for   New York State employees and the worker and volunteer program started  conducting screening examinations in May 2002 and July 2002,  respectively. However, OPHEP did not launch its program until June 2003.  (Figure 1 highlights key actions in developing and implementing the  program.)
Initially, OPHEP did not develop a plan for identifying all federal agencies  and their personnel that responded to the WTC disaster or for contacting  all federal personnel eligible for the screening program. Although OPHEP  and FEMA developed a partial list of federal responders—consisting  primarily of HHS and FEMA personnel—OPHEP did not have a  comprehensive list of agencies and personnel, and so could not inform all  eligible federal responders about the WTC screening program. The  program’s principal action to communicate with the federal responders  was to place program information and registration forms on FEMA’s  National Disaster Medical System (NDMS) Web site.
The screening program had operated for about 6 months when OPHEP  officials decided in January 2004 to place it on hold by temporarily  suspending examinations. FOH officials told us that after examinations  were suspended, 35 additional people requested examinations and they  were placed on a waiting list. FOH officials told us that they completed   394 screening examinations from June 2003 through March 2004, with  most completed by the end of September 2003. According to FOH, a total  of $177,967 was spent on examinations through March 2004.
OPHEP officials told us that three operational issues contributed to the  decision to suspend the program. First, OPHEP could not inform all  eligible federal responders about the program because it lacked a  comprehensive list of eligible federal responders. Second, there were  concerns about what actions FOH clinicians could take when screening  examinations identified problems. Based on the examinations that had  been completed before the program was placed on hold, FOH clinicians  determined that many participants needed additional diagnostic testing  and follow-up care, primarily in the areas of respiratory functioning and  mental health. However, under the existing interagency agreement there  was no provision for providing follow-up care and no direction for  clinicians on how to handle the provision of further diagnostic tests,  treatment, or referrals. FOH officials told us that they were concerned  about continuing to provide screening examinations without the ability to  provide participants with additional needed services. Third, although the  screening program had been established to provide examinations to all  federal responders regardless of their current federal employment status,  HHS officials told us that the department determined that FOH does not  have the authority to provide examinations to people who are no longer in  federal service.
In April 2005, OPHEP began to prepare for resuming the examination  program by enlisting the assistance of ATSDR—which had successfully  developed the WTC Health Registry—to establish a database containing  the names of federal responders, develop a new registration Web site, and  develop and implement recruitment and enrollment plans for current and  former federal workers. OPHEP executed an agreement with ATSDR  allocating about $491,000 of the funds remaining from FEMA for these  activities. OPHEP officials told us that, as part of the program’s  recruitment and enrollment efforts, in mid-October 2005, a letter was sent  to about 1,700 people identified as having responded to the WTC disaster  to inform them about the program. According to OPHEP, the new  registration Web site was activated in October 2005, and through early  February 2006, 345 additional current federal workers and 32 former  workers had registered to obtain an examination.
In July 2005, OPHEP and FOH executed a new agreement for providing  examinations to WTC responders who are current federal workers. Under  this agreement, FOH clinicians can now make referrals for follow-up care.  For example, they can refer participants with mental health symptoms to  an FOH employee assistance program for a telephone assessment. If  appropriate, the participant can then be referred to an employee  assistance program counselor for up to six in-person sessions. If the  assessment indicates that longer treatment is necessary, the participant  can instead be advised to use health insurance to obtain care or to contact  a local Department of Labor Office of Workers’ Compensation to file a  claim, receive further evaluation, and possibly obtain compensation for  mental health services. The new agreement between OPHEP and FOH also  allows FOH clinicians to order additional clinical tests, such as special  pulmonary and breathing tests. FOH officials told us that they resumed  providing examinations in December 2005 and that 133 examinations have  since been completed.
The examination process has not resumed for WTC responders who are no  longer federal employees, but in late February 2006, OPHEP executed an  agreement with NIOSH to arrange for the worker and volunteer program  to provide examinations to these WTC responders. Under this agreement,  former federal workers will receive a one-time examination comparable to  the type of examination that FOH is now providing to current federal  workers. Patients with eligible conditions will be referred to the treatment  programs supported by the American Red Cross or other available  programs.
section_title: Two Federal Agencies Established Their Own Screening Programs
paragraphs: In addition to the OPHEP program, we identified two federal agencies that  established medical screening programs to assess the health of the  personnel they had sent to respond to the WTC disaster. One agency, the  Army, established two screening programs—one specifically for Army  Corps of Engineers personnel and one that also included other Army  responders. The Army Corps of Engineers established a voluntary program  to assess the health of 356 employees it had sent to respond to the  disaster. The program, initiated in November 2001, consists of sending  employees an initial medical screening questionnaire covering physical  health issues. If questionnaire results indicate symptoms or concerns that  need further evaluation, the employee is offered a medical examination.  As of August 2004, 92 Corps of Engineers employees had participated in  the program, with 40 receiving follow-up examinations. The Army’s Center  for Health Promotion and Preventive Medicine initiated a program—the  World Trade Center Support Health Assessment Survey—in January 2002.  It was designed as a voluntary medical screening for Army military and  civilian personnel, including contractors. From January 2002 through  September 2003, questionnaires were sent to 256 employees. According  to DOD, 162 employees completed and returned their questionnaires. In  addition, the U.S. Marshals Service, within the Department of Justice,  modified an existing agreement with FOH in 2003 for FOH to screen  approximately 200 U.S. Marshals Service employees assigned to the WTC  or Pentagon recovery sites. The one-time assessment includes a screening  questionnaire and a medical examination. FOH officials said that as of  August 2005, 88 of the 200 U.S. Marshals Service employees had requested  and obtained examinations.
section_title: Lessons from WTC Health Monitoring Programs Could Assist Future Monitoring Efforts
paragraphs: Officials involved in the WTC health monitoring programs implemented by  state and local governments or private organizations—including officials  from the federal administering agencies—derived lessons from their  experiences that could help officials design such programs in the future.  They include the need to quickly identify and contact people affected by a  disaster, the value of a centrally coordinated approach for assessing  individuals’ health, the importance of monitoring both physical and mental  health, and the need to plan for providing referrals for treatment when  screening examinations identify health problems.
Officials involved in the monitoring programs emphasized the importance  of quickly identifying and contacting people affected by a disaster. They  said that potential monitoring program participants can become more  difficult to locate as time passes. In addition, potential participants’  ability to recall the events of a disaster may decrease over time, making it  more difficult to collect accurate information about their experiences and  health. However, the time it takes to design, fund, approve, and implement  monitoring programs can lead to delays in contacting the people who were  affected. For example, the WTC Health Registry received funding in July  2002 but did not begin collecting data until September 2003—2 years after  the disaster. From July 2002 through September 2003, the program’s  activities included developing the registry protocol, testing the  questionnaire, and obtaining approval from institutional review boards.  To expedite such information collection during the response to future  disasters, ATSDR officials have developed a model data collection  instrument, known as the Rapid Response Registry, to allow officials to  identify and locate potentially affected individuals immediately after a  disaster and collect basic preliminary information, such as their current  contact information and their location during the disaster. ATSDR officials  expect that using this instrument would reduce delays in collecting time- sensitive information while officials take the time necessary to develop a  monitoring program for disaster-related health effects. According to  ATSDR officials, state and local agencies can request the instrument and  adapt it to their specific needs, and ATSDR can provide technical  assistance on how to use the instrument. To date, 14 states have requested  the Rapid Response Registry from ATSDR.
Furthermore, officials told us that health monitoring for future disasters  could benefit from additional centrally coordinated planning. Such  planning could facilitate the collection of compatible data among  monitoring efforts, to the extent that this is appropriate. Collecting  compatible data could allow information from different programs to be  integrated and contribute to improved data analysis and more useful  research. In addition, centrally coordinated planning could help officials  determine whether separate programs are necessary to serve different  groups of people. For example, worker and volunteer program officials  indicated that it might have been possible for that program to serve federal  workers who responded to the disaster in an official capacity, which might  have eliminated the need to organize and administer a separate program  for them.
Officials also stated that screening and monitoring programs should be  comprehensive, encompassing both physical and mental health  evaluations. This observation is supported by CDC’s recent report that  about half of the adults that CDC assessed in areas heavily affected by  Hurricane Katrina exhibited levels of emotional distress that indicated a  potential need for mental health services. Officials from the WTC worker  and volunteer medical monitoring program told us that the initial planning  for their program had focused primarily on screening participants’  physical health, and that they did not originally budget for extensive  mental health screening. Subsequently, they recognized a need for more  extensive mental health screening, including greater participation of  mental health professionals, but the program’s federal funding was not  sufficient to cover such screening. By collaborating with the Mount Sinai  School of Medicine Department of Psychiatry, program officials were able  to obtain philanthropic funding to develop a more comprehensive mental  health questionnaire; provide on-site psychiatric screening; and when  necessary, provide more extensive evaluations.
Many participants in the monitoring programs required additional testing  or needed treatment for health problems that were identified during  screening examinations. Officials told us that finding treatment sources for  such participants is an important, but challenging, part of the programs’  responsibility. For example, officials from the worker and volunteer  program stated that identifying providers available to treat participants  became a major part of their operations, and was especially difficult when  participants lacked health insurance. The officials said that planning for  future monitoring programs should include a determination of how best to  help participants obtain needed treatment.
section_title: Concluding Observations
paragraphs: Federally funded programs implemented by state and local governments  or private organizations to monitor the health effects of the WTC attack on  thousands of people who responded to the disaster have made progress.  However, the program HHS established to screen the federal employees  whose agencies sent them to the WTC after the attack has accomplished  little, completing screenings of 527 of the thousands of federal responders.  Moreover, no examinations occurred for a period of almost 2 years, and  examinations for former federal workers have not yet resumed. Because  of this program’s limited activity, and the inability of federal workers to  participate in other monitoring programs because of the assumption that  they would have the opportunity to receive screening examinations  through the HHS program, many federal responders may not have had an  opportunity to identify and seek treatment for health problems related to  the WTC disaster.
Based on their experiences, officials involved in the monitoring programs  have made a number of useful observations that will apply to future  terrorist attacks and natural disasters, such as Hurricane Katrina. For  example, screening for mental as well as physical health problems in New  Orleans and along the Gulf Coast will be critical to the recovery of  survivors of Hurricane Katrina and the responders to the disaster, as  indicated by CDC’s early assessment of the extent of mental health  distress among people affected by Hurricane Katrina. Another observation  was the importance of quickly identifying and contacting people affected  by a disaster. The model data collection instrument developed by ATSDR  has the potential to enable officials to quickly and systematically identify  people involved in future disasters, a necessary first step in conducting  health monitoring. Finally, officials noted the value of centrally  coordinated planning of health monitoring, which could improve the  underlying database for research and eliminate the need for separate and  sometimes incompatible monitoring programs for different populations.
Mr. Chairman, this completes my prepared remarks. I would be happy to  respond to any questions you or other members of the subcommittee may  have at this time.
section_title: Contact and Acknowledgments
paragraphs: For further information about this testimony, please contact Cynthia A.  Bascetta at (202) 512-7101 or bascettac@gao.gov. Contact points for our  Offices of Congressional Relations and Public Affairs may be found on the  last page of this statement. Helene F. Toiv, Assistant Director; George H.  Bogart; Alice L. London; Roseanne Price; and William R. Simerl made key  contributions to this statement.
section_title: Appendix I: Abbreviations
section_title: Appendix II: Government Agencies That Sent Responders Following the World Trade Center Attack
paragraphs: Through our work, we identified the following agencies that sent  employees to respond to the World Trade Center attack of September 11,  2001.
subsections: section_title: Federal Agencies
section_title: New York State Agencies
section_title: New York City Agencies
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