September 11: HHS Has Screened Additional Federal Responders for World Trade Center Health Effects, but Plans for Awarding Funds for Treatment Are Incomplete
Released: 2006-09-08T00:00:00

Letter

Background

When the WTC buildings collapsed on September 11, 2001, an estimated 250,000 to 400,000 people in the vicinity 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 responders. Subsequently, an 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, were also exposed.

Health Effects

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. Many health effects have persisted or worsened over time.

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. A recent study suggested that exposed firefighters on average experienced a decline in lung function equivalent to that which would be produced by 12 years of aging.

Commonly reported mental health effects among responders and other affected individuals included 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 have also been reported.

Monitoring Programs

The five programs that were created for monitoring the health of WTC responders vary in aspects such as the implementing agency (i.e., federal, state, or local governments or private organizations) and eligibility requirements. (See table 1.) Each program received federal funding, the majority of which was provided by the Department of Homeland Security’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. FEMA is authorized to use a portion of its WTC-related funding for screening and long-term monitoring of responders. With regard to treatment, however, FEMA may generally 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 the health monitoring programs. OPHEP, which coordinates and directs HHS’s emergency preparedness and response program, entered into separate interagency agreements with FOH to implement the federal responder screening program for current federal workers and with NIOSH to implement the screening program for former federal workers.

We reported in February 2006 that four of the five monitoring programs had made progress in screening and monitoring affected individuals and gathering data. (See table 1.) These four programs—the FDNY WTC Medical Monitoring Program, the worker and volunteer WTC program, the New York State responder screening program, and the WTC Health Registry—had collected information that monitoring officials said 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. In contrast to the progress made by the other programs, the HHS WTC Federal Responder Screening Program had lagged behind and accomplished little. The program was established to provide free voluntary medical screening examinations for 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 WTC health monitoring program. Through March 2004, the program—which started about a year later than the other WTC monitoring programs—completed screenings of 394 federal workers. HHS put the program on hold in January 2004, when it stopped scheduling new examinations, because it wanted to resolve several operational issues, including HHS’s determination that FOH did not have the authority to provide examinations to people who are no longer in federal service. Under an agreement between OPHEP and FOH that was established in July 2005, the program resumed providing examinations for current federal workers in December 2005, and in February 2006, OPHEP executed an agreement with NIOSH calling for NIOSH to arrange for the worker and volunteer WTC program to provide examinations to former federal workers.

Many participants in the monitoring programs required additional testing or needed treatment for health problems that were identified during screening examinations. The FDNY WTC Medical Monitoring Program referred participants to the FDNY Bureau of Health Services, but the other programs primarily referred participants to their primary care physician or to privately funded programs available to responders, such as treatment services provided by the Mount Sinai clinical center that are funded by the American Red Cross. We previously reported that officials told us that finding treatment services for such participants was an important, but challenging, part of the programs’ responsibility. For example, officials from the worker and volunteer WTC 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.

New Federal Funding for Monitoring and Treatment

In December 2005, the Congress appropriated $75 million to CDC to fund programs providing baseline screening, long-term monitoring, and health care treatment for emergency services and recovery personnel who responded to the WTC disaster. The law required CDC to give first priority to programs coordinated by the FDNY-BHS, Mount Sinai-Irving J. Selikoff Center for Occupational and Environmental Medicine, and New York City Department of Health and Mental Hygiene, which have existing monitoring programs, and to programs coordinated by the POPPA program and Project COPE. The mission of the POPPA program, which offers peer-to- peer mental health counseling to New York City Police Department (NYPD) officers, is to reduce unresolved emotional trauma that can result in problems ranging from poor performance to suicide. The POPPA program counseled over 5,000 NYPD officers in the 10 months following the WTC attack. Project COPE, a collaboration of the New York City Police Foundation and Columbia University Medical Center, uses a hotline and outreach efforts to encourage NYPD uniformed and civilian employees to obtain mental health services, which are provided by Columbia University Medical Center and private providers. As of August 2006, over 18,000 employees had attended educational sessions held at police facilities, and over 5,000 had received individual counseling or therapy consultations.

HHS Has Registered and Screened Additional Federal Responders, and Arrangements for Screening Former Federal Workers outside the New York Metropolitan Area Are under Development

Since February 2006, an additional 1,385 federal responders have registered for screening examinations, bringing the total number registered on the WTC Federal Responder Screening Program Web site to 1,762 as of late August 2006, including 283 former federal workers. Because the total number of federal responders involved in the WTC disaster is uncertain, it is not possible to determine what proportion of the total number of federal responders have registered. HHS’s efforts to conduct outreach to federal agencies resulted in the identification of 2,200 federal responders. As of late August 2006, FOH had completed screening examinations for a total of 907 federal workers, 380 of whom were screened since February 2006. Through OPHEP’s agreement with NIOSH, the worker and volunteer WTC program has provided screening examinations to 13 former federal workers and scheduled 11 more. Most of the former federal workers reside outside the New York metropolitan area, where the worker and volunteer WTC program is located, and NIOSH is working to establish a national network of providers to screen these workers.

HHS’s Outreach Resulted in Registration of Additional Federal Workers Involved in WTC Disaster Response

HHS reported that as of late August 2006, a total of 1,762 federal responders had registered for screening examinations on the WTC Federal Responder Screening Program Web site, including 1,479 current federal workers and 283 former federal workers. Of the 1,762 federal responders who registered, 1,385 had registered since February 2006, including 1,134 current federal workers and 251 former federal workers. It is not possible to determine what proportion of the total number of federal responders involved in the WTC disaster have registered because the total number involved is uncertain. In determining the total number of individuals eligible for its program, the WTC Health Registry developed an estimate of 8,621 federal responders, based on information from 31 federal agencies in the New York area and information from FEMA on 22 Urban Search and Rescue teams that were deployed to the WTC area. This estimate does not account for all federal responders from other geographic areas.

As we reported previously, in the aftermath of the WTC disaster, HHS did not have a comprehensive list of all federal agencies and federal responders who were involved. In an effort to develop such a list, OPHEP and ATSDR entered into an agreement in April 2005 for ATSDR—which had developed the WTC Health Registry—to identify and register federal responders. Under the agreement, ATSDR, through a contractor, contacted federal agencies, developed a list of WTC federal responders, and conducted outreach to encourage the responders to register on the new Web site that the contractor established. As a result of this effort, 46 federal agencies were identified and provided contact information for 2,200 federal responders.

The agreement between OPHEP and ATSDR expired on April 30, 2006, ending the outreach efforts to federal agencies. Under an agreement with OPHEP, NIOSH assumed responsibility for maintaining the WTC Federal Responder Screening Program Web site through December 31, 2006.

HHS Has Screened Additional Current Federal Workers

As of late August 2006, FOH had completed screening examinations for a total of 907 of the federal workers who had registered; 380 of the 907 were screened since February 2006. Under its agreement with OPHEP, FOH is responsible for regularly retrieving from the registration Web site requests for screening examinations for current federal workers and for assigning individuals to a provider for screening. FOH officials told us that they contact the individual and the provider to inform them of the need to arrange an appointment for screening. The program relies on individuals to call the designated provider and schedule their appointment. FOH officials told us that individuals who have registered do not always contact the provider to schedule an appointment or may not keep an appointment or call to reschedule it. FOH officials said that they have attempted to contact such individuals but often received no response.

We reported in our February 2006 testimony that under the July 2005 agreement FOH clinicians can refer current federal workers for follow-up care if the screening examination—which includes a medical questionnaire, clinical tests such as a chest X-ray, and a full physical examination—reveals significant physical or mental health symptoms. On July 31, 2006, FOH told us that it had referred 39 current federal workers with mental health symptoms to an FOH employee assistance program (EAP) for counseling; 24 to ear, nose, and throat specialists; 19 to pulmonary medicine specialists; and 1 to a cardiology specialist.

Screening of Former Federal Workers Has Resumed, but Group Is Widely Dispersed and Nationwide Network of Providers Is Still Being Established

As of late August 2006, 283 former federal workers had registered to receive screening examinations, which under OPHEP’s agreement with NIOSH are to be provided by the worker and volunteer WTC program. Under the agreement, former federal workers receive a one-time examination comparable to the examination that FOH is providing to current federal workers. As of July 31, 2006, 13 screening examinations had been completed and 11 were scheduled. These completed and scheduled examinations are in addition to the 139 former federal workers that FOH screened after the WTC Federal Responder Screening Program resumed because FOH thought they were current federal workers.

A key challenge in providing screening examinations to former federal workers has been that a large number do not reside in the New York metropolitan area, where the worker and volunteer WTC program is based. The 283 former federal workers who have registered for screening examinations reside in 40 states, and about 240 of them reside outside the New York metropolitan area. NIOSH officials said that making arrangements to screen these widely dispersed responders has presented challenges, such as ensuring that the arrangements comply with federal privacy protections. NIOSH is negotiating with the Association of Occupational and Environmental Clinics (AOEC) in an effort to establish a national network of providers to screen these federal workers.

CDC Has Awarded a Small Portion of the $75 Million Appropriation and Plans to Make Decisions about Treatment Coverage before Awarding Most of the Funds

CDC plans to award the $75 million appropriated for screening, monitoring, and treatment to the five organizations that the law identified as having priority for funding. CDC officials expect to make awards to the WTC Health Registry, Project COPE, and the POPPA program over a 3-year period and to award funds to the FDNY WTC and worker and volunteer WTC programs in response to their treatment costs. CDC officials have a proposed spending plan but told us that because they are uncertain about how quickly treatment costs could deplete the available funds, they may need to make adjustments. Officials from the FDNY WTC and worker and volunteer WTC programs told us that they expected that their estimated portion of the appropriated funds would be depleted well before the end of 3 years. As of August 2006, CDC awarded about $4.5 million of the $75 million—about $1.9 million to the WTC Health Registry, $1.5 million to the FDNY WTC program, and almost $1.1 million to the worker and volunteer WTC program. In addition, CDC expects to award $1.5 million to the POPPA program and $3 million to Project COPE in September 2006. CDC is waiting to make further awards until agency officials have reached certain decisions about the coverage of treatment services, such as which prescription drugs would be covered in the FDNY WTC and worker and volunteer WTC programs. CDC expects to begin making further awards around February 2007.

CDC Plans to Award the $75 Million to the Five First-Priority Organizations

CDC has decided to award the $75 million for screening, monitoring, and treatment that was appropriated to the agency in December 2005 to the five organizations identified as having first priority for funding. The organizations to which CDC plans to provide funds are the FDNY WTC program, for monitoring and treatment; the worker and volunteer WTC program, for monitoring and treatment; the WTC Health Registry, for monitoring; Project COPE, for treatment; and the POPPA program, for treatment.

CDC plans to make awards through cooperative agreements with the programs. In general, it plans to send letters to the organizations inviting them to submit applications for funding; the applications would then undergo a two-stage peer review process. At the first stage a panel of outside experts would assess the merit of the application, and at the second stage CDC officials would determine the amount of funding the applicant would receive.

CDC has made preliminary decisions about how to allocate the $75 million among the five organizations. As of September 1, 2006, CDC’s proposed spending plan indicated that awards would be made in the following way: $53.5 million for treatment and $8 million for monitoring, to be divided between the FDNY WTC and worker and volunteer WTC programs; $9 million for the WTC Health Registry; $3 million for Project COPE; and $1.5 million for the POPPA program.

CDC officials expect to make awards to the WTC Health Registry, Project COPE, and the POPPA program over a 3-year period, but are not sure over what period they will make awards to the FDNY WTC and worker and volunteer WTC programs. A CDC official told us that the agency would award funds to the latter two programs in response to the treatment costs they incur. He said that agency officials are uncertain about how quickly treatment costs could deplete the available funds, because CDC does not know how many additional people will seek monitoring and what the extent of their treatment needs will be. For example, previous media reports about illnesses diagnosed in responders have resulted in increases in responders seeking examinations. Officials from the FDNY WTC and worker and volunteer WTC programs told us that they expected that their estimated portion of the appropriated funds would be depleted well before the end of 3 years. CDC has developed a proposed spending plan that indicates that about 36 percent of the funds would be awarded by the end of fiscal year 2007 and about 63 percent would be awarded during fiscal year 2008, although a CDC official told us that, depending on the extent of treatment needs, the funds could be used more quickly. The current plan is based in part on an agreement CDC made with the American Red Cross in April 2006. According to a CDC official, under this agreement, American Red Cross funds would be used for the treatment services that are eligible for American Red Cross support—such as basic clinical examinations and certain tests—for as long as such funds are available and the CDC funds would be used to cover other program expenses—such as infrastructure costs, more sophisticated diagnostic tests, and the conversion of medical records into an electronic format.

CDC Has Awarded about $4.5 Million of the $75 Million Appropriated

As of August 2006, CDC had awarded a total of about $4.5 million of the $75 million to the WTC Health Registry, FDNY WTC program, and worker and volunteer WTC program. According to CDC officials, the WTC Health Registry applied for about $1.9 million in April 2006 for continuation of its collection of health data, and CDC awarded the registry $1.9 million in May 2006 and about $56,000 in July 2006. On August 10 and 11, 2006, respectively, the worker and volunteer WTC and FDNY WTC programs submitted applications to CDC for funds related to treatment services. In response to these applications, CDC made what an agency official termed emergency awards to the FDNY WTC and worker and volunteer WTC programs on August 11, 2006. CDC provided $1.5 million to the FDNY WTC program for leasing treatment space that previously had been provided by New York City at no cost. CDC provided almost $1.1 million to the worker and volunteer WTC program to hire an additional physician to help reduce the 3- to 4-month waiting time for treatment appointments that recently developed at the Mount Sinai clinical center, as well as to hire three administrators and a medical assistant. Officials from the clinical center told us that this waiting time had developed because additional people were seeking monitoring due to media reports about illnesses diagnosed in responders and because the proportion of responders who needed to be referred for treatment had increased.

In addition to having awarded about $4.5 million, CDC plans to award an additional $4.5 million in September 2006. In spring 2006, CDC invited Project COPE and the POPPA program, two programs that provide mental health services to members of the NYPD, to apply for funding through a peer review process. In their applications, the POPPA program requested $1.5 million over 3 years, and Project COPE requested funding of $3 million over 3 years. CDC received their applications in June and July, respectively, and plans to implement the application review process in time to be in a position to make awards in September 2006.

CDC Is Waiting to Award Additional Funds for Treatment Until It Makes Decisions about Coverage

CDC does not plan to award additional funds from the $75 million to the FDNY WTC and worker and volunteer WTC programs until it makes certain decisions about the coverage of treatment services. These decisions include determining which medical conditions will be covered; developing a prescription drug formulary, that is, the list of drugs that will be covered; and determining the extent to which inpatient care will be covered. CDC officials said that they expected to make the coverage decisions in late 2006 and that they would obtain input from the American Red Cross and the programs.

A CDC official told us that making decisions about which prescription drugs to cover could be the greatest challenge CDC and the programs face, because of the potentially high cost of drugs needed to treat responders. An FDNY WTC program official said that prescription drug costs are a looming financial problem for the FDNY WTC program. The CDC official told us that the most common diagnoses of WTC responders— gastroesophageal reflux disease, obstructive pulmonary disease, and mental health conditions—frequently are treated with prolonged and expensive drug therapy. For example, medications for respiratory therapy can cost $1,000 a month and may continue for a year. The FDNY WTC program official estimated that 100 percent coverage of prescriptions for firefighters and emergency medical technicians could cost $10 million to $18 million per year and potentially consume all of the funding that CDC would provide to the program. Clinicians at the worker and volunteer WTC clinical center at Mount Sinai stated that spending on prescription drugs at their center was increasing by $5,000 to $10,000 each month and amounted to $60,000 in July 2006.

Another coverage decision that CDC faces is to determine the extent to which inpatient care will be covered. Currently, the FDNY WTC and worker and volunteer WTC programs provide only outpatient care, but officials involved with these programs believe that the treatment funds from the $75 million should cover some inpatient care, such as when a responder’s WTC-linked asthma becomes exacerbated to an extent that requires hospitalization.

CDC officials told us that they plan to reach decisions about treatment coverage in fall 2006. They also plan to invite the FDNY WTC and worker and volunteer WTC programs to submit applications for treatment funding in the fall. If the applications are submitted by December 2006, CDC officials expect to be able to review them in time to provide funding to the programs by February 2007.

CDC is also in the process of resolving issues related to providing access to screening, monitoring, and treatment services for WTC responders, including former federal workers, who reside outside the New York metropolitan area. CDC is negotiating with AOEC about possibly using AOEC clinics around the country to provide these services. CDC officials told us they intend that monitoring and treatment services available to responders around the country would be comparable to services provided by the worker and volunteer WTC program.

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; Fred Caison; Anne Dievler; Keyla Lee; and Roseanne Price made key contributions to this statement.

Appendix I: Abbreviations

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