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

Letter

Background

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.

Health Monitoring Programs Implemented by State and Local Governments or Private Organizations Have Made Progress

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.

Three WTC Monitoring Programs Provided Medical Examinations to Identify Responders’ Health Problems

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.

Programs Provide Data for WTC-Related Health Research

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.

Program Officials Are Concerned That Current Federal Funding Arrangements Will End before Needed Monitoring Is Complete

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.

CDC Is in Process of Deciding How to Distribute New Funds for Monitoring and Treating WTC Responders

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.

HHS’s Program for Screening Federal Responders Has Accomplished Little

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.

HHS Program Screened Few Federal Workers and Recently Started Conducting Examinations after a Hiatus of Almost 2 Years

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.

Two Federal Agencies Established Their Own Screening Programs

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.

Lessons from WTC Health Monitoring Programs Could Assist Future Monitoring Efforts

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.

Concluding Observations

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.

Contact and Acknowledgments

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.

Appendix I: Abbreviations

Appendix II: Government Agencies That Sent Responders Following the World Trade Center Attack

Through our work, we identified the following agencies that sent employees to respond to the World Trade Center attack of September 11, 2001.

Federal Agencies

New York State Agencies

New York City Agencies

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