September 11: HHS Needs to Ensure the Availability of Health Screening and Monitoring for All Responders
Published: 2007-07-23T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: Responders to the World Trade Center (WTC) attack were exposed to many hazards, and concerns remain about long-term health effects of the disaster and the availability of health care services for those affected. In 2006, GAO reported on problems with the Department of Health and Human Services' (HHS) WTC Federal Responder Screening Program and on the Centers for Disease Control and Prevention's (CDC) distribution of treatment funding. GAO was asked to update its 2006 testimony. GAO assessed the status of (1) services provided by the WTC Federal Responder Screening Program, (2) efforts by CDC's National Institute for Occupational Safety and Health (NIOSH) to provide services for nonfederal responders residing outside the New York City (NYC) area, and (3) NIOSH's awards to grantees for treatment services and efforts to estimate service costs. GAO reviewed program documents and interviewed HHS officials, grantees, and others.
section_title: What GAO Found
paragraphs: HHS's WTC Federal Responder Screening Program has had difficulties ensuring the uninterrupted availability of services for federal responders. From January 2007 to May 2007, the program stopped scheduling screening examinations because there was a change in the administration of the WTC Federal Responder Screening Program, and certain interagency agreements were not established in a timely way to keep the program fully operational. In April 2006 the program also stopped scheduling and paying for specialty diagnostic services because a contract with the program's new provider network did not cover these services. Almost a year later, the contract was modified, and the program resumed scheduling and paying for these services in March 2007. NIOSH is considering expanding the WTC Federal Responder Screening Program to include monitoring--follow-up physical and mental health examinations--and is assessing options for funding and service delivery. If federal responders do not receive monitoring, health conditions that arise later may not be diagnosed and treated, and knowledge of the health effects of the WTC disaster may be incomplete. NIOSH has not ensured the availability of screening and monitoring services for nonfederal responders residing outside the NYC area, although it recently took steps toward expanding the availability of these services. In late 2002, NIOSH arranged for a network of occupational health clinics to provide screening services. This effort ended in July 2004, and until June 2005, NIOSH did not fund screening or monitoring services for nonfederal responders outside the NYC area. In June 2005, NIOSH funded the Mount Sinai School of Medicine Data and Coordination Center (DCC) to provide screening and monitoring services; however, DCC had difficulty establishing a nationwide network of providers and contracted with only 10 clinics in 7 states. In 2006, NIOSH began to explore other options for providing these services, and in May 2007, it took steps toward expanding the provider network. However, these efforts are incomplete. NIOSH has awarded treatment funds to four NYC-area programs, but does not have a reliable cost estimate of serving responders. In fall 2006, NIOSH awarded $44 million for outpatient treatment and set aside $7 million for hospital care. The New York/New Jersey WTC Consortium and the New York City Fire Department WTC program, which received the largest awards, used NIOSH's funding to continue outpatient services, offer full coverage for prescriptions, and cover hospital care. Program officials expect that NIOSH's outpatient treatment awards will be spent by the end of fiscal year 2007. NIOSH lacks a reliable estimate of service costs because the estimate that NIOSH and its grantees developed included potential costs for certain program changes that may not be implemented, and in the absence of actual treatment cost data, they relied on questionable assumptions. It is unclear whether the estimate overstates or understates the cost of serving responders. To improve future cost estimates, HHS officials have required the two largest grantees to report detailed cost data.

section_title: Letter
paragraphs: Tens of thousands of people served as responders in the aftermath of the  World Trade Center (WTC) disaster, including New York City Fire  Department (FDNY) personnel, federal government personnel, and other  government and private-sector workers and volunteers from New York  and elsewhere. These responders were exposed to numerous physical  hazards, environmental toxins, and psychological trauma. More than   5 years after the destruction of the WTC buildings, concerns remain about  the physical and mental health effects of the disaster, the long-term nature  of some of these health effects, and the availability of health care services  for those affected.
Following the WTC attack, federal funding was provided to government  agencies and private organizations to establish programs for screening,  monitoring, or treating responders for illnesses and conditions related to  the WTC disaster; these programs are referred to in this report as the WTC  health programs. The Department of Health and Human Services (HHS)  funded the programs as separate efforts serving different categories of  responders—for example, firefighters, other workers and volunteers, or  federal responders—and has responsibility for coordinating program  efforts. We have previously reported on the implementation of these  programs and their progress in providing services to responders, who  reside in all 50 states and the District of Columbia. In 2005 and 2006, we  reported that one of the WTC health programs, HHS’s WTC Federal  Responder Screening Program, which was established to provide onetime  screening examinations for responders who were federal employees when  they responded to the WTC attack, had lagged behind the other programs  and accomplished little. HHS established the program in June 2003 and  then suspended the program’s activities in March 2004, in part because of  difficulties identifying eligible federal responders and providing any  necessary diagnostic services related to responders’ screening  examinations. After taking steps to address these concerns, HHS resumed  the program in December 2005; when we testified in September 2006, we  reported that the program was registering and screening federal  responders and that a total of 907 federal workers had received screening  examinations. We also reported that the National Institute for  Occupational Safety and Health (NIOSH), a component of HHS’s Centers  for Disease Control and Prevention (CDC) responsible for administering  most of the WTC health programs for responders, had begun to take steps  to provide access to screening, monitoring, and treatment services for  nonfederal responders who reside outside the New York City (NYC)  metropolitan area.
In September 2006 we also testified that CDC had begun, but not  completed, the process of allocating funding from a $75 million  appropriation made in fiscal year 2006 for WTC health programs for  responders. This appropriation was available to provide health care  treatment for responders, the first time an appropriation was specifically  available for this purpose. We reported that in August 2006, CDC had  awarded $1.5 million to the FDNY WTC Medical Monitoring and Treatment  Program from this appropriation and almost $1.1 million to the New  York/New Jersey (NY/NJ) WTC Consortium for treatment-related  activities. We also reported that CDC officials told us they could not  predict how long the funding from the appropriation would support four  WTC health programs that provide treatment services, in part because of  uncertainty about the cost of providing these services.
You requested that we update information provided in our September 2006  testimony. Specifically, in this report we assess the status of (1) services  provided by the WTC Federal Responder Screening Program, (2) NIOSH’s  efforts to provide services for nonfederal responders residing outside the  NYC metropolitan area, and (3) NIOSH’s awards to grantees for treatment  services, as well as efforts to estimate the cost of serving responders.
To assess the status of services provided by the WTC Federal Responder  Screening Program, we obtained and reviewed program data and  documents from HHS, including applicable interagency agreements. We  interviewed officials from the HHS entities involved in administering and  implementing the program: NIOSH and two HHS offices, the Federal  Occupational Health Services (FOH) and the Office of the Assistant  Secretary for Preparedness and Response (ASPR). To assess the status of  NIOSH’s efforts to provide services for nonfederal responders residing  outside the NYC metropolitan area, we obtained documents and  interviewed officials from NIOSH. We also interviewed officials of  organizations that worked with NIOSH to provide or facilitate services for  nonfederal responders who reside outside the NYC metropolitan area,  including the Mount Sinai School of Medicine and the Association of  Occupational and Environmental Clinics (AOEC)—a network of  university-affiliated and other private occupational health clinics across  the United States and in Canada. To assess the status of NIOSH’s awards  to grantees for treatment services and efforts to estimate the cost of  serving responders, we obtained documents and interviewed officials from  NIOSH, HHS’s Office of the Assistant Secretary for Health, and HHS’s  Office of the Assistant Secretary for Planning and Evaluation. We also  interviewed officials from two WTC health program grantees from which  the majority of responders receive medical services: the NY/NJ WTC  Consortium and the FDNY WTC program. In addition, we interviewed  officials from the American Red Cross, which has funded treatment  services for responders. We reviewed a 2007 report submitted to the  mayor of New York City that included an estimate of the cost of providing  health services to responders, and we attended a briefing by a NYC  official who participated in compiling that estimate. To do the work for  our review, we relied on information provided by agency officials and  contained in government publications. We compared the information with  information in other supporting documents, when available, to determine  its consistency and reasonableness. We determined that the information  we obtained was sufficiently reliable for our purposes. We conducted our  work from November 2006 through July 2007 in accordance with generally  accepted government auditing standards.
subsections: section_title: Background
paragraphs: 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, 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 emergency responders.  In the days, weeks, and months that followed the attack, tens of thousands  of responders were involved in some capacity. These responders  included personnel from many federal, state, and NYC government  agencies and private organizations, as well as volunteers.
subsections: section_title: Health Effects
paragraphs: 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 buildings. Physical health effects included injuries and  respiratory conditions, such as sinusitis, asthma, and a new syndrome  called WTC cough, which consists of persistent coughing accompanied by  severe respiratory symptoms. Almost all firefighters who responded to the  attack experienced respiratory effects, including WTC cough. One study  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 post- traumatic stress disorder (PTSD), depression, and anxiety. Behavioral  health effects such as alcohol and tobacco use have also been reported.
Some health effects experienced by responders have persisted or  worsened over time, leading many responders to begin seeking treatment  years after September 11, 2001. Clinicians involved in screening,  monitoring, and treating responders have found that many responders’  conditions—both physical and psychological—have not resolved and have  developed into chronic disorders that require long-term monitoring. For  example, findings from a study conducted by clinicians at the NY/NJ WTC  Consortium show that at the time of examination, up to 2.5 years after the  start of the rescue and recovery effort, 59 percent of responders enrolled  in the program were still experiencing new or worsened respiratory  symptoms. Experts studying the mental health of responders found that  about 2 years after the WTC attack, responders had higher rates of PTSD  and other psychological conditions compared to others in similar jobs who  were not WTC responders.
Clinicians also anticipate that other health effects, such as immunological  disorders and cancers, may emerge over time. Clinicians at the FDNY WTC  program found an increased incidence of sarcoid-like pulmonary disease  involving inflammation of the lungs. Of 26 cases of this sarcoid-like  pulmonary disease, 13 cases were identified during the first year after the  WTC attack and 13 cases were found during the next 4 years.
section_title: Overview of WTC Health Programs
paragraphs: There are six key programs that currently receive federal funding to  provide voluntary health screening, monitoring, or treatment at no cost to  responders. The six WTC health programs, shown in table 1, are (1) the  FDNY WTC Medical Monitoring and Treatment Program; (2) the NY/NJ  WTC Consortium, which comprises five clinical centers in the NY/NJ  area; (3) the WTC Federal Responder Screening Program; (4) the WTC  Health Registry; (5) Project COPE; and (6) the POPPA program. The  programs vary in aspects such as the HHS administering agency or  component responsible for administering the funding; the implementing  agency, component, or organization responsible for providing program  services; eligibility requirements; and services. Each program uses a  variety of approaches, such as Web sites, toll-free numbers, and  community forums, to conduct outreach to eligible populations.
The WTC health programs that are providing screening and monitoring are  tracking thousands of individuals who were affected by the WTC disaster.  As of June 2007, the FDNY WTC program had screened about 14,500  responders and had conducted follow-up examinations for about 13,500 of  these responders, while the NY/NJ WTC Consortium had screened about  20,000 responders and had conducted follow-up examinations for about  8,000 of these responders. Some of these responders include nonfederal  responders residing outside the NYC metropolitan area. As of June 2007,  the WTC Federal Responder Screening Program had screened 1,305  federal responders and referred 281 responders for employee assistance  program services or specialty diagnostic services. In addition, the WTC  Health Registry, a monitoring program that does not provide in-person  screening or monitoring, but consists of periodic surveys of self-reported  health status and related studies, collected baseline health data from over  71,000 people who enrolled in the registry. In the winter of 2006, the  Registry began its first adult follow-up survey, and as of June 2007, over  36,000 individuals had completed the follow-up survey.
In addition to providing medical examinations, FDNY’s WTC program and  the NY/NJ WTC Consortium have collected information for use in  scientific research to better understand the health effects of the WTC  attack and other disasters. The WTC Health Registry is also collecting  information to assess the long-term public health consequences of the  disaster. Clinicians who evaluate and treat responders to the WTC disaster  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.
section_title: Federal Funding and Coordination of WTC Health Programs
paragraphs: Beginning in October 2001 and continuing through 2003, FDNY’s WTC  program, the NY/NJ WTC Consortium, the WTC Federal Responder  Screening Program, and the WTC Health Registry received federal funding  to provide services to responders. This funding primarily came from  appropriations to the Department of Homeland Security’s Federal  Emergency Management Agency (FEMA), as part of the approximately  $8.8 billion that the Congress appropriated to FEMA for response and  recovery activities after the WTC disaster. FEMA entered into  interagency agreements with HHS agencies to distribute the funding to the  programs. For example, FEMA entered into an agreement with NIOSH to  distribute $90 million appropriated in 2003 that was available for  monitoring. FEMA also entered into an agreement with ASPR for ASPR  to administer the WTC Federal Responder Screening Program. A   $75 million appropriation to CDC in fiscal year 2006 for purposes related  to the WTC attack resulted in additional funding for the monitoring  activities of the FDNY WTC program, NY/NJ WTC Consortium, and the  Registry. The $75 million appropriation to CDC in fiscal year 2006 also  provided funds that were awarded to the FDNY WTC program, NY/NJ  WTC Consortium, Project COPE, and the POPPA program for treatment  services for responders. An emergency supplemental appropriation to  CDC in May 2007 included an additional $50 million to carry out the same  activities provided for in the $75 million appropriation made in fiscal year  2006. The President’s proposed fiscal year 2008 budget for HHS includes  $25 million for treatment of WTC-related illnesses for responders.
In February 2006, the Secretary of HHS designated the Director of NIOSH  to take the lead in ensuring that the WTC health programs are well  coordinated, and in September 2006 the Secretary established a WTC Task  Force to advise him on federal policies and funding issues related to  responders’ health conditions. The chair of the task force is HHS’s  Assistant Secretary for Health, and the vice chair is the Director of NIOSH.  The task force has two subcommittees, one examining finance issues (cost  and financing of WTC-related health programs) and the other examining  the scientific evidence on the health effects of the WTC disaster. The task  force reported to the Secretary of HHS in early April 2007.
section_title: WTC Federal Responder Screening Program Has Had Difficulties Ensuring the Availability of Screening Services and Is Not Designed to Provide Monitoring
paragraphs: HHS’s WTC Federal Responder Screening Program has not ensured the  uninterrupted availability of screening services for federal responders.  Since the beginning of the program, the provision of screening  examinations has been intermittent (see fig. 1). After the program resumed  screening examinations in December 2005 and conducted them for about  a year, HHS again placed the program on hold in January 2007. From  January to May 2007, FOH, the program’s implementing agency, did not  schedule screening examinations for federal responders. This interruption  in service occurred because there was a change in the administration of  the WTC Federal Responder Screening Program, and certain interagency  agreements were not established in a timely way to keep the program fully  operational. In late December 2006, ASPR and NIOSH signed an  interagency agreement giving NIOSH $2.1 million to administer the WTC  Federal Responder Screening Program. Subsequently, NIOSH and FOH  needed to sign a new interagency agreement to allow FOH to continue to  be reimbursed for providing screening examinations. It took several  months for the agreement between NIOSH and FOH to be negotiated and  approved. After both agencies signed the agreement, FOH resumed  scheduling screening examinations for federal responders in May 2007. At  that time, there were 28 federal responders waiting to be scheduled for  screening examinations.
The WTC Federal Responder Screening Program’s provision of specialty  diagnostic services has also been intermittent. The health effects  experienced by responders often result in a need for diagnostic services by  ear, nose, and throat doctors; cardiologists; and pulmonologists. When  these diagnostic services are needed after the initial screening  examination, FOH refers responders to these specialists and pays for the  services. The WTC Federal Responder Screening Program stopped  scheduling and paying for these specialty diagnostic services for almost a  year, from April 2006 to March 2007. This occurred because in April 2006,  FOH contracted with a new provider network to provide various services  for federal employees, such as immunizations and vision tests. The  contract with the new provider network did not cover specialty diagnostic  services by ear, nose, and throat doctors; cardiologists; and  pulmonologists. Although the previous provider network had provided  these services, the new provider network and the HHS contract officer  interpreted the statement of work in the new contract as not including  these specialty diagnostic services. FOH was therefore unable to pay for  these services for federal responders and stopped scheduling them in April  2006. Almost a year later, in March 2007, FOH modified its contract with  the provider network and resumed scheduling and paying for specialty  diagnostic services for federal responders. FOH estimated that at that  time, 104 responders were waiting for appointments for these services.
The WTC Federal Responder Screening Program was designed to provide  a onetime screening examination; however, NIOSH officials told us they  want to expand the program to offer monitoring examinations—that is,  follow-up physical and mental health examinations—to federal  responders. Clinicians involved in the monitoring of responders have  noted the need for long-term monitoring because some possible health  effects, such as cancer, may not appear until many years after a person has  been exposed to a harmful agent. NIOSH officials have said that to expand  the WTC Federal Responder Screening Program to include monitoring,  NIOSH would need to secure funding and determine who would provide  the monitoring services. A NIOSH official told us that one option for  funding would be for NIOSH to use some of the $2.1 million of the existing  FEMA-ASPR funding to have the WTC Federal Responder Screening  Program include monitoring. For this to happen, the NIOSH official said,  FEMA, which originally provided the funding to ASPR to establish the  program, would have to agree to change the scope of the program. In  February 2007, NIOSH sent a letter to FEMA asking whether the funding  for the program could be provided directly to NIOSH and whether the  funding could be used to support monitoring in addition to the onetime  screening examination the program currently offers, but as of June 2007,  NIOSH had not received a response from FEMA. NIOSH officials told us  that if FEMA does not agree to this arrangement, NIOSH will consider  using other funding to pay for monitoring. According to a NIOSH official, if  NIOSH either reaches a new agreement with FEMA or decides to pay for  monitoring of federal responders by itself, NIOSH would have to either  negotiate a new agreement with FOH to provide monitoring, which FOH  officials said they would consider doing, or it would have to make  arrangements with another program, such as the NY/NJ WTC Consortium,  to provide monitoring.
section_title: NIOSH Has Not Ensured the Availability of Services for Nonfederal Responders Residing outside the NYC Metropolitan Area
paragraphs: NIOSH has not ensured the availability of screening and monitoring  services for nonfederal responders residing outside the NYC metropolitan  area, although it recently took steps toward expanding the availability of  these services. NIOSH made two initial efforts to provide screening and  monitoring services for these responders. The first effort, in which NIOSH  arranged for AOEC to provide screening services, began in late 2002 and  ended in July 2004. From August 2004 until June 2005, NIOSH did not fund  any organization to provide services to nonfederal responders outside the  NYC metropolitan area. In June 2005, NIOSH began its second effort by  awarding funds to Mount Sinai’s DCC to provide both screening and  monitoring services. However, DCC had difficulty establishing a network  of providers that could serve nonfederal responders residing throughout  the country. In early 2006, NIOSH began exploring how to establish a  broader national program that would provide screening and monitoring  services, as well as treatment, for nonfederal responders residing outside  the NYC metropolitan area. However, these efforts are incomplete. In May  2007, NIOSH and DCC arranged for a national network of providers to  screen and monitor nonfederal responders, and a pilot program consisting  of 20 examinations was scheduled to begin in summer 2007.
subsections: section_title: NIOSH’s Initial Efforts to Provide Screening and Monitoring Services for Nonfederal Responders Residing outside the NYC Area Did Not Ensure Availability of These Services
paragraphs: In November 2002, NIOSH began its first effort to provide services for  nonfederal responders outside the NYC metropolitan area. The exact  number of these responders is unknown. NIOSH awarded a contract for  about $306,000 to the Mount Sinai School of Medicine to provide screening  services for nonfederal responders residing outside the NYC metropolitan  area and directed it to establish a subcontract with AOEC. AOEC then  subcontracted with 32 of its member clinics across the country to provide  screening services. For its part, AOEC was responsible for establishing a  network of providers nationwide through its member clinics, referring  nonfederal responders to the AOEC member clinics for screening  examinations, working with Mount Sinai to determine responders’  program enrollment eligibility, ensuring proper billing, and reimbursing its  member clinics for services. From February 2003 to July 2004, the 32  AOEC member clinics screened 588 nonfederal responders nationwide.
An AOEC official told us AOEC experienced challenges in providing the  screening services nationwide through its member clinics. This official  said, for example, that many nonfederal responders—especially those  residing in rural areas—did not enroll in the program because they did not  live near an AOEC member clinic. In addition, the process to reimburse  AOEC member clinics for clinical examinations required substantial  coordination among AOEC, AOEC member clinics, and Mount Sinai. After  a nonfederal responder was examined by an AOEC member clinic, Mount  Sinai had to review the responder’s medical records and determine that all  aspects of the examination were completed before AOEC could issue a  payment to its member clinic.
From August 2004 until June 2005, NIOSH did not fund any organization to  provide screening or monitoring services outside the NYC metropolitan  area for nonfederal responders. Mount Sinai’s subcontract with AOEC to  provide screening services ended in July 2004 when NIOSH was  establishing cooperative agreements to provide both screening and  monitoring services for nonfederal responders nationwide. A NIOSH  official told us that from July 2004 until June 2005, NIOSH focused on  providing screening and monitoring services for nonfederal responders in  the NYC metropolitan area because the majority of nonfederal responders  reside there. NIOSH had requested applications from organizations to  provide both screening and monitoring services for nonfederal responders  and awarded funds to the FDNY WTC program and NY/NJ WTC  Consortium to provide these services in the NYC metropolitan area. AOEC  applied to use its national network of member clinics to provide screening  and monitoring for nonfederal responders residing outside the NYC  metropolitan area, but NIOSH rejected AOEC’s application. AOEC was  the only organization that applied to provide screening and monitoring  services to these responders.
In June 2005, NIOSH began its second effort to provide services for  nonfederal responders residing outside the NYC metropolitan area.  Specifically, NIOSH awarded about $776,000 to DCC to coordinate the  provision of screening and monitoring services for these responders.  DCC spent about $387,000 of these funds on providing screening and  monitoring services for these responders. In June 2006, NIOSH awarded an  additional $788,000 to DCC to provide screening and monitoring services  for nonfederal responders residing outside the NYC metropolitan area.  According to a NIOSH official, DCC budgeted about $393,000 of the  $788,000 for providing these services, and received approval from NIOSH  to redirect the remaining amount ($395,000) for other purposes. NIOSH  officials told us that they assigned DCC the task of providing screening  and monitoring services to nonfederal responders outside the NYC  metropolitan area because the task was consistent with DCC’s  responsibilities for the NY/NJ WTC Consortium, which include data  monitoring and coordination. DCC, however, had difficulty establishing a  network of providers that could serve nonfederal responders residing  throughout the country—ultimately contracting with only 10 clinics in 7  states to provide screening and monitoring services. DCC officials said  that as of June 2007, the 10 clinics were monitoring 180 responders.
According to a NIOSH official, there have been several challenges involved  in establishing a network of providers to screen and monitor nonfederal  responders nationwide. These include establishing contracts with clinics  that have the occupational health expertise to provide services  nationwide, establishing patient data transfer systems that comply with  applicable privacy laws, navigating the institutional review board process  for a large provider network, and establishing payment systems with  clinics participating in a national network of providers.
section_title: NIOSH Has Recently Taken Steps to Establish a National Program for Nonfederal Responders to Provide Screening, Monitoring, and Treatment Services, but Its Efforts Are Incomplete
paragraphs: Since 2006, NIOSH has been exploring how to establish a national program  that would expand the availability of screening and monitoring services, as  well as provide treatment services, to nonfederal responders residing  outside the NYC metropolitan area. NIOSH officials have indicated that  they would like to expand the availability of screening and monitoring  services by establishing a network of providers with locations convenient  to all nonfederal responders. NIOSH officials have also indicated that they  would like to offer the same set of services to these responders that is  offered to nonfederal responders in the NYC metropolitan area— screening, monitoring, and treatment services. NIOSH has considered  different approaches for this national program. For example, in early 2006,  NIOSH officials considered funding AOEC and its network of 50 member  clinics to administer a national program and instructed DCC to  discontinue efforts to establish new contracts with clinics nationwide.  However, in February 2007, NIOSH officials decided that AOEC would not  administer the national program. On March 15, 2007, NIOSH issued a  formal request for information from organizations that have an interest in  and the capability of developing a national program for responders  residing outside the NYC metropolitan area. In this request, NIOSH  described the scope of a national program as offering screening,  monitoring, and treatment services to about 3,000 nonfederal responders  through a national network of occupational health facilities. NIOSH also  specified that the program’s facilities should be located within reasonable  driving distance to responders and that participating facilities must  provide copies of examination records to DCC.
In May 2007, NIOSH took steps toward establishing the national program,  but its efforts are incomplete. NIOSH approved a request from DCC to  redirect about $125,000 from the June 2006 award to establish a contract  with a company to provide screening and monitoring services for  nonfederal responders residing outside the NYC metropolitan area.
Subsequently, DCC contracted with QTC Management, Inc., one of the  four organizations that had responded to NIOSH’s request for information.  QTC has a network of providers located across all 50 states and the  District of Columbia and will use internal medicine and occupational  medicine doctors in its network to provide these services. In addition,  QTC will identify and subcontract with providers outside of the QTC  network to screen and monitor nonfederal responders who do not reside  within 25 miles of a QTC provider. In June 2007, NIOSH awarded  $800,600 to DCC for coordinating the provision of screening and  monitoring examinations, and QTC will receive a portion of this award  from DCC to provide about 1,000 screening and monitoring examinations  through May 2008. According to DCC officials, they are working with  QTC to establish examination protocols and administrative systems  needed to begin conducting screening and monitoring examinations, and  they will begin a pilot program consisting of 20 examinations in summer  2007. DCC’s contract with QTC does not include treatment services, and  NIOSH officials are still exploring how to provide and pay for treatment  services for nonfederal responders residing outside the NYC metropolitan  area.
section_title: CDC’s NIOSH Awarded Funding for Treatment Services to Four WTC Health Programs, but Does Not Have a Reliable Estimate of Service Costs
paragraphs: In fall 2006, CDC’s NIOSH awarded $44 million to four programs in the  NYC metropolitan area for providing outpatient treatment services to  responders. Officials from the FDNY WTC program and NY/NJ WTC  Consortium used some of the funds to provide full coverage for  prescription medications. NIOSH also set aside $7 million for the FDNY  WTC program and NY/NJ WTC Consortium to provide inpatient hospital  care. Officials from these programs expect that the funds they received  from NIOSH for outpatient services will be spent by the end of fiscal year  2007. NIOSH has worked with two of its grantees to estimate the cost of  monitoring and treating responders; however, the most recent effort, in  2007, has not produced reliable results because the estimate included  potential costs for certain program changes that may not be implemented  as well as some costs that reduced the estimate’s accuracy. In addition, in  the absence of actual treatment cost data, the estimate was based in part  on questionable assumptions. To improve the reliability of future cost  estimates, HHS officials have required some of the WTC health programs  to report detailed cost and treatment data.
subsections: section_title: NIOSH Awarded $44 Million in Outpatient Treatment Funding, Which Is Expected to Be Spent by End of Fiscal Year 2007, and Set Aside $7 Million for Hospital Care
paragraphs: In fall 2006, NIOSH awarded and set aside funds totaling $51 million from  its $75 million appropriation for four WTC health programs in the NYC  metropolitan area to provide treatment services to responders enrolled in  these programs. Of the $51 million, NIOSH awarded about $44 million for  outpatient services to the FDNY WTC program, the NY/NJ WTC  Consortium, Project COPE, and the POPPA program. NIOSH made the  largest awards to the two programs from which almost all responders  receive medical services, the FDNY WTC program and NY/NJ WTC  Consortium (see table 2). Officials from the FDNY WTC program and  NY/NJ WTC Consortium expect funds they received from NIOSH for  outpatient treatment services to be expended by the end of fiscal year  2007. In addition to the $44 million it awarded for outpatient services,  NIOSH set aside about $7 million for the FDNY WTC program and NY/NJ  WTC Consortium to pay for responders’ WTC-related inpatient hospital  care as needed.
The FDNY WTC program and NY/NJ WTC Consortium used their awards  from NIOSH to continue providing treatment services to responders and to  expand the scope of available treatment services. Before NIOSH made its  awards for treatment services, the treatment services provided by the two  programs were supported by funding from private philanthropies and  other organizations. According to officials of the NY/NJ WTC Consortium,  this funding was sufficient to provide only outpatient care and partial  coverage for prescription medications. The two programs used NIOSH’s  awards to continue to provide outpatient services to responders, such as  treatment for gastrointestinal reflux disease, upper and lower respiratory  disorders, and mental health conditions. They also expanded the scope of  their programs by offering responders full coverage for their prescription  medications for the first time. A NIOSH official told us that some of the  commonly experienced WTC conditions, such as upper airway conditions,  gastrointestinal disorders, and mental health disorders, are frequently  treated with medications that can be costly and may be prescribed for an  extended period of time. According to an FDNY WTC program official,  prescription medications are now the largest component of the program’s  treatment budget.
The FDNY WTC program and NY/NJ Consortium also expanded the scope  of their programs by paying for inpatient hospital care for the first time,  using funds from the $7 million that NIOSH had set aside for this purpose.  According to a NIOSH official, NIOSH pays for hospitalizations that have  been approved by the medical directors of the FDNY WTC program and  NY/NJ WTC Consortium through awards to the programs from the funds  NIOSH set aside for this purpose. As of June 1, 2007, there were 15  hospitalizations of responders, 13 of whom were referred by the NY/NJ  WTC Consortium’s Mount Sinai clinic and 2 by the FDNY WTC program.  Responders have received inpatient hospital care to treat, for example,  asthma, pulmonary fibrosis, and severe cases of depression or PTSD. If  not completely used by the end of fiscal year 2007, funds set aside for  hospital care could be used for outpatient services.
After receiving NIOSH’s funding for treatment services in fall 2006, the  NY/NJ WTC Consortium ended its efforts to obtain reimbursement from  health insurance held by responders with coverage. Consortium officials  told us that efforts to bill insurance companies involved a heavy  administrative burden and were frequently unsuccessful, in part because  the insurance carriers typically denied coverage for work-related health  conditions on the grounds that such conditions should be covered by state  workers’ compensation programs. However, according to officials from  the NY/NJ WTC Consortium, responders trying to obtain workers’  compensation coverage routinely experienced administrative hurdles and  significant delays, some lasting several years. Moreover, according to  these program officials, the majority of responders enrolled in the program  either had limited or no health insurance coverage. According to a labor  official, responders who carried out cleanup services after the WTC attack  often did not have health insurance, and responders who were  construction workers often lost their health insurance when they became  too ill to work the number of days each quarter or year required to  maintain eligibility for insurance coverage.
section_title: NIOSH and Its Grantees Have Estimated Costs of Providing Monitoring and Treatment Services, but These Efforts Have Not Produced a Reliable Estimate
paragraphs: NIOSH has worked with two of its grantees—the FDNY WTC program and  NY/NJ WTC Consortium—to estimate the annual cost of monitoring and  treating responders. In December 2006, the agency and its grantees  estimated that the annual cost of monitoring and treating responders  enrolled in the FDNY WTC program and NY/NJ WTC Consortium,  including associated program costs, was about $257 million. In January  2007, NIOSH revised the estimate to also include the cost of monitoring  and treating responders enrolled in the WTC Federal Responder Screening  Program and nonfederal responders residing outside the NYC  metropolitan area who participate in the WTC health programs. The  estimate did not include the cost of providing mental health treatment  services through Project COPE and the POPPA program. The January  2007 estimate projected that aggregate annual costs for providing  monitoring and treatment services, along with associated program  expenses, could be approximately $230 million or $283 million, depending  on the number of responders who receive treatment services.
To develop an estimate of outpatient treatment costs, which are generally  higher than monitoring costs, NIOSH and its grantees projected the  incidence of WTC-related health conditions among responders and the  number of responders who would likely obtain treatment. Based on this  number, they projected that in a given year,    25 to 30 percent of participating responders will have aerodigestive  (combined pulmonary and gastrointestinal) disorders that require  treatment,   25 to 35 percent of participating responders will have mental health  disorders that require treatment, and   1 to 4 percent of participating responders will have musculoskeletal  disorders that require treatment.
To estimate treatment costs for these conditions, NIOSH and its grantees  multiplied the estimated per patient cost of providing outpatient services  by the number of responders projected to need these services in a given  year. They did not have actual cost data on these services because the  WTC health programs had not been required to report such data when  private organizations were funding the programs’ treatment services. In  the absence of actual cost data, NIOSH and its grantees relied on workers’  compensation reimbursement rates for specific services as a proxy for  outpatient treatment costs. They adjusted the proxy rates to reflect  different treatment utilization levels—routine, moderate, or extensive  outpatient care—and used their best judgment, based on experience, for  the distribution of responders into the three treatment utilization levels.  Specifically, they used the proxy rates to represent moderate utilization,  reduced the proxy rates by one-third to represent routine utilization, and  increased the proxy rates by one-third to represent extensive outpatient  care. Outpatient treatment costs were further adjusted to account for the  differences in treatment protocols and medication costs at the FDNY WTC  program and NY/NJ WTC Consortium. After estimating the cost of  providing outpatient services, NIOSH and its grantees estimated other  treatment-related expenses—inpatient care, medical monitoring, indirect  costs, language translation, data analysis, and expenses incurred by  NIOSH such as for travel and telephone service. They added these  estimated expenses to the estimate for outpatient services to arrive at a  total annual cost amount.
Several factors reduced the reliability of the January 2007 estimate. It is  unclear whether the overall estimate overstated or understated the costs  of monitoring and treating responders. First, the estimate included  potential costs that reflect certain program changes that may not be  implemented. For example, when NIOSH and its grantees projected the  cost of medically monitoring responders, the estimate assumed a more  frequent monitoring interval, which has been discussed by program  officials but has not been adopted. Similarly, they included costs for  providing monitoring and treatment services to federal responders, who  are not now eligible for such services.
Second, NIOSH mistakenly included certain costs in the estimate.  According to NIOSH officials, the estimate included a calculation for  indirect costs associated with monitoring and treating responders.  However, NIOSH officials later learned that the workers’ compensation  reimbursement rates that were used as a proxy for outpatient treatment  costs already contained an adjustment for indirect costs. As a result, total  indirect costs were overstated. In addition, the estimate included the cost  of monitoring services provided by the FDNY WTC program and NY/NJ  WTC Consortium without taking into account that these services were  already funded through mid-2009 by other NIOSH funds.
Finally, in the absence of actual data on the cost of providing treatment  services, the estimate was based in part on two questionable assumptions.  First, when NIOSH and its grantees used the assumption that adjusting the  proxy rates up or down by one-third would account for the differences in  treatment utilization levels, there were no data to support the accuracy of  such adjustments. As a result, it is unclear whether the projections of  treatment costs have resulted in an overestimate or underestimate of  treatment costs. Second, the assumption used to estimate the cost of  medical monitoring was not consistent with the historical participation  rates reported by the NY/NJ WTC Consortium. NIOSH and its grantees  based the estimate on the assumption that every responder would keep his  or her appointment for periodic medical monitoring. However, NY/NJ  WTC Consortium officials told us that the rate at which responders have  kept scheduled appointments is 50 to 60 percent.
section_title: HHS Officials Have Taken Steps to Develop More Reliable Cost Estimates
paragraphs: To improve the reliability of future efforts to estimate the cost of providing  services to responders, NIOSH officials and the Assistant Secretary for  Health—in his capacity as chairman of the HHS WTC Task Force—have  required the FDNY WTC program and NY/NJ WTC Consortium to report  detailed demographic, service utilization, and cost information. The  information requested from each program includes  the number of responders monitored and treated,   diagnoses of responders monitored and treated,    medical services provided and the cost of those services, and  responders’ occupations and insurance coverage status.
These data are to be reported on a quarterly basis, and the first reports  were received from the NY/NJ WTC Consortium in late February 2007 and  from the FDNY WTC program in March 2007. These reports included data  covering 2 quarters—July through September 2006, when treatment  funding was provided by the American Red Cross, and October through  December 2006, when treatment funding was provided by NIOSH and the  American Red Cross.
According to an HHS official who is a member of the HHS WTC Task  Force, some of the cost reports submitted in February and March were  incomplete and therefore did not provide sufficient information to support  a reliable estimate of the annual cost of medical services provided by the  WTC health programs. For example, some clinical centers submitted  expense reports for only 1 quarter instead of 2. Furthermore, a NIOSH  official told us that some of the data that were compiled manually were  not accurate. According to the task force member, HHS will need at least   4 quarters of complete and accurate data before it can make reliable  estimates. This would mean that HHS may not have data needed to  develop a reliable estimate of costs until October 2008. NIOSH officials  told us, however, that as they, the FDNY WTC program, and the NY/NJ  WTC Consortium gain experience and as report data are automated, the  quality of the data they develop and the reliability of cost estimates will  improve.
section_title: Conclusions
paragraphs: Screening and monitoring the health of the people who responded to the  September 11, 2001, attack on the World Trade Center are critical for  identifying health effects already experienced by responders or those that  may emerge in the future. In addition, collecting and analyzing information  produced by screening and monitoring responders can give health care  providers information that could help them better diagnose and treat  responders and others who experience similar health effects.
While some groups of responders are eligible for screening and follow-up  physical and mental health examinations through the federally funded  WTC health programs, other groups of responders are not eligible for  comparable services or may not always find these services available.  Federal responders are eligible only for the initial screening examination  provided through the WTC Federal Responder Screening Program and are  not eligible for federally funded follow-up monitoring examinations. In  addition, many responders who reside outside of the NYC metropolitan  area have not been able to obtain screening and monitoring services  because available services are too distant. Moreover, HHS has repeatedly  interrupted the programs it established for federal responders and  nonfederal responders outside of NYC, resulting in periods when no  services were available to them.
HHS continues to fund and coordinate the WTC health programs and has  key federal responsibility for ensuring the availability of services to  responders. HHS and its agencies have recently taken steps to move  toward providing screening and monitoring services to federal responders  and to nonfederal responders living outside of the NYC area. However,  these efforts are not complete, and the stop-and-start history of the  department’s efforts to serve these groups does not provide assurance that  the latest efforts to extend screening and monitoring services to these  responders will be successful and will be sustained over time. Therefore, it  is important for HHS to make a concerted effort, without further delay, to  ensure that health screening and monitoring services are available to all  people who responded to the attack on the World Trade Center, regardless  of who their employer is or where they reside.
section_title: Recommendations for Executive Action
paragraphs: To ensure that comparable screening and monitoring services are  available to all responders, we are recommending that the Secretary of  HHS expeditiously take two actions: (1) ensure that screening and  monitoring services are available for federal responders and (2) ensure  that screening and monitoring services are available for nonfederal  responders residing outside of the NYC metropolitan area.
section_title: Agency Comments and Our Evaluation
paragraphs: HHS reviewed a draft of this report and provided comments, which are  reprinted in appendix I. HHS also provided technical comments, which we  incorporated as appropriate.
HHS commented that overall, our report is an accurate and appropriate  account of its activities and accomplishments concerning health services  for responders to the WTC disaster. However, HHS stated that an  inaccurate understanding of our findings would likely result if a reader  read only the summary information about the WTC Federal Responder  Screening Program and services for nonfederal responders residing  outside the NYC area in the Highlights and Results in Brief. Where  appropriate, we revised the language in the Highlights and Results in Brief  to be consistent with the findings in our report. HHS also stated that our  description of the services available to nonfederal responders residing  outside the NYC metropolitan area did not acknowledge that over   60 percent of these responders have been examined by the DCC network  or by AOEC. However, because the total number of nonfederal responders  residing outside the NYC metropolitan area is unknown, we believe it is  not possible to determine what percentage of these responders has been  examined.
In its comments, HHS raised concerns about our use of the terms HHS,  CDC, and NIOSH with respect to their role in particular activities. We  modified the report where appropriate to clarify respective agency  responsibilities. Finally, HHS acknowledged that the estimate of the costs  of monitoring and treating WTC responders was imprecise. HHS also  noted, as we have reported, that the clinical centers of the NY/NJ WTC  Consortium and the FDNY WTC program have begun submitting quarterly  cost and treatment reports and that this information will be used to  improve cost estimates. We believe this is an important step toward the  development of a reliable estimate.
HHS did not comment on our recommendations.
As agreed with your offices, unless you publicly announce its contents  earlier, we plan no further distribution of this report until 30 days after its  issue date. At that time we will send copies of this report to the Secretary  of Health and Human Services, congressional committees, and other  interested parties. We will also make copies available to others upon  request. In addition, the report will be available at no charge on the GAO  Web site at http://www.gao.gov.
If you or your staffs have any questions about this report, please contact  me at (202) 512-7114 or bascettac@gao.gov. Contact points for our Offices  of Congressional Relations and Public Affairs may be found on the last  page of this report. GAO staff who made major contributions to this report  are listed in appendix II.
section_title: Appendix I: Comments from the Department of Health and Human Services
section_title: Appendix II: GAO Contact and Staff Acknowledgments
subsections: section_title: GAO Contact
section_title: Acknowledgments
paragraphs: In addition to the contact named above, Helene F. Toiv, Assistant Director;  George Bogart; Hernan Bozzolo; Frederick Caison; Anne Dievler; and  Krister Friday made key contributions to this report.