Gulf War Illnesses: Federal Research Efforts Have Waned, and Research Findings Have Not Been Reassessed
Published: 2004-06-01T00:00:00

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Highlights:
section_title: Why GAO Did This Study
paragraphs: More than a decade after the 1991 Persian Gulf War, there is continued interest in the federal response to the health concerns of Gulf War veterans. Gulf War veterans' reports of illnesses and possible exposures to various health hazards have prompted numerous federal research projects on Gulf War illnesses. This research has been funded primarily by the Department of Veterans Affairs (VA), the Department of Defense (DOD), and the Department of Health and Human Services (HHS). In 1993, the President named the Secretary of VA as the responsible party for coordinating research activities undertaken or funded by the executive branch of the federal government on the health consequences of service in the Gulf War. In 2002, a congressionally mandated federal advisory committee--the VA Research Advisory Committee on Gulf War Veterans' Illnesses (RAC)--was established to provide advice on federal Gulf War illnesses research needs and priorities to the Secretary of VA. This statement is based on GAO's report entitled Department of Veterans Affairs: Federal Gulf War Illnesses Research Strategy Needs Reassessment (GAO-04-767). The testimony presents findings about the status of research on Gulf War illnesses and VA's communication and collaboration with RAC.
section_title: What GAO Found
paragraphs: The federal focus on Gulf War-specific research has waned, but VA has not yet analyzed the latest research findings to identify whether there were gaps in research or to identify promising areas for future research. As of September 2003, about 80 percent of the 240 federally funded medical research projects for Gulf War illnesses had been completed. In recent years, VA and DOD have decreased their expenditures on Gulf War illnesses research and have expanded the scope of their medical research programs to incorporate the long-term health effects of all hazardous deployments. Interagency committees formed by VA to coordinate federal Gulf War illnesses research have evolved to reflect these changing priorities, but over time these entities have been dissolved or have become inactive. In addition, VA has not reassessed the extent to which the collective findings of completed Gulf War illnesses research projects have addressed key research questions or whether the questions remain relevant. The only assessment of progress in answering these research questions was published in 2001, when findings from only about half of all funded Gulf War illnesses research were available. Moreover, it did not identify whether there were gaps in existing Gulf War illnesses research or promising areas for future research. This lack of a comprehensive analysis of research findings leaves VA at greater risk of failing to answer unresolved questions about causes, course of development, and treatments for Gulf War illnesses. RAC's efforts to provide advice and make recommendations to the Secretary of VA on Gulf War illnesses research may have been hampered by VA senior administrators' poor information sharing and limited collaboration on research initiatives and program planning. For example, VA failed to inform RAC about its 2002 major research program announcement that included Gulf War illnesses research. VA and RAC are exploring ways to improve information sharing and collaboration, including VA's hiring of a senior scientist who would both guide VA's Gulf War illnesses research and serve as the agency's liaison for routine updates to the advisory committee. However, most of these changes had not been finalized at the time of GAO's review.

section_title: Letter
paragraphs: I am pleased to be here today as you consider the current status of the  federal government’s research into the health concerns of Gulf War  veterans. In the years following the 1991 Persian Gulf War, approximately  80,000 veterans have reported various symptoms including fatigue, muscle  and joint pains, headaches, memory loss, skin rash, diarrhea, and sleep  disturbances. Scientists have agreed that many veterans have unexplained  illnesses—commonly referred to as Gulf War illnesses—that are  characterized by one or more symptoms that do not conform to a standard  diagnosis. Gulf War veterans’ reports of illnesses and possible exposures  to several known and potential health hazards have prompted numerous  federal research projects on the nature, extent, and treatment of Gulf War  illnesses. Federal Gulf War illnesses research projects have been funded  primarily by the Department of Veterans Affairs (VA), the Department of  Defense (DOD), and the Department of Health and Human Services (HHS).  In 1993, the President named the Secretary of VA as the responsible party  for coordinating research activities undertaken or funded by the executive  branch of the federal government on the health consequences of service in  the Gulf War. In 2002, a congressionally mandated federal advisory  committee—the VA Research Advisory Committee on Gulf War Veterans’  Illnesses (RAC)—was established to provide advice on federal Gulf War  illnesses research needs and priorities to the Secretary of VA. The  committee is made up of members of the general public, including non-VA  researchers and veterans’ advocates.
My remarks will summarize our findings on the status of federal research  on Gulf War illnesses and VA’s communication and collaboration with  RAC. My statement is based on our report entitled Department of Veterans  Affairs: Federal Gulf War Illnesses Research Strategy Needs  Reassessment (GAO-04-767), which will be issued today. The report also  includes a description of the status of DOD’s investigations on potential  exposures of service members and veterans to health hazards, such as  chemical and biological agents, and efforts that have been made by VA and  DOD to monitor cancer incidence among Gulf War veterans.
Our findings are based on interviews with senior officials within VA and  DOD and senior managers within each agency’s relevant research offices.  We analyzed pertinent agency documents, including annual reports to  congressional committees describing research priorities, ongoing and  completed projects, and agency funding. Additionally, we interviewed RAC  officials, attended a RAC meeting, and reviewed RAC reports and  recommendations. We conducted our work from September 2003 through  May 2004 in accordance with generally accepted government auditing  standards.
In summary, the federal focus on Gulf War-specific research has waned,  and VA—the agency with lead responsibility for coordination of Gulf War  illnesses issues—has not yet analyzed the latest research findings to  identify whether there were gaps in research or to identify promising areas  for future research. As of September 2003, about 80 percent of the 240  federally funded medical research projects for Gulf War illnesses had been  completed. In recent years, VA and DOD have decreased their  expenditures on research specifically for Gulf War illnesses and have  expanded the scope of their medical research programs to incorporate the  long-term health effects of all hazardous deployments. Interagency  committees formed by VA to coordinate federal Gulf War illnesses  research evolved to reflect these changing priorities, but over time these  entities have been dissolved or have become inactive. In addition, VA has  not reassessed the extent to which the collective findings of completed  Gulf War Illnesses research projects have addressed key research  questions or whether the questions remain relevant. The only assessment  of progress in answering these research questions was published in 2001,  when findings from only about half of all federally funded Gulf War  illnesses research were available. Moreover, the summary did not identify  whether there were gaps in existing Gulf War illnesses research or  promising areas for future research. The lack of a comprehensive analysis  leaves VA at greater risk of failing to answer unresolved questions about  causes, course of development, and treatments for Gulf War illnesses.
RAC’s efforts to provide advice and make recommendations on Gulf War  illnesses research may have been hampered by VA senior administrators’  incomplete or unclear information sharing and limited collaboration on  Gulf War illnesses research initiatives and program planning. For example,  VA failed to inform RAC about its 2002 major research program  announcement that included Gulf War illnesses research. However, VA  and RAC are exploring ways to improve information sharing, including  VA’s hiring of a senior scientist who would guide VA’s Gulf War illnesses  research and serve as the agency’s liaison for routine updates to RAC.  However, most of these changes had not been finalized at the time of  GAO’s review.
subsections: section_title: Background
paragraphs: Although about 700,000 U.S. military personnel were deployed to the Gulf  War in the early 1990s, casualties were relatively light compared with  those in previous major conflicts. Some veterans began reporting health  problems shortly after the war that they believed might be due to their  participation in the conflict. VA, DOD, HHS, and other federal agencies  initiated research and investigations into these health concerns and the  consequences of possible hazardous exposures.
VA is the coordinator for all federal activities on the health consequences  of service in the Gulf War. These activities include ensuring that the  findings of all federal Gulf War illnesses research are made available to the  public and that federal agencies coordinate outreach to Gulf War veterans  in order to provide information on potential health risks from service in  the Gulf War and corresponding services or benefits. The Secretary of VA  is required to submit an annual report on the results, status, and priorities  of federal research activities related to the health consequences of military  service in the Gulf War to the Senate and House Veterans’ Affairs  Committees. VA has provided these reports to Congress since 1995. In May  2004, VA issued its annual report for 2002. VA has carried out its  coordinating role through the auspices of interagency committees, which  have changed over time in concert with federal research priorities and  needs. Specifically, the mission of these interagency committees has  evolved to include coordination for research on all hazardous  deployments, including but not limited to the Gulf War. (See fig. 1.)
Federal research efforts for Gulf War illnesses have been guided by  questions established by the interagency Research Working Group (RWG),  which was initially established under the Persian Gulf Veterans  Coordinating Board (PGVCB) to coordinate federal research efforts.  Between 1995 and 1996, the RWG identified 19 major research questions  related to illnesses in Gulf War veterans. In 1996, the group added 2 more  questions regarding cancer risk and mortality rates to create a set of 21  key research questions that have served as an overarching strategy in  guiding federal research for Gulf War illnesses. (See app. I for the list of  key questions.) The 21 research questions cover the extent of various  health problems, exposures among the veteran population, and the  difference in health problems between Gulf War veterans and control  populations. In 1998, the RWG expanded federal Gulf War illnesses  research priorities to include treatment, longitudinal follow-up of illnesses,  disease prevention, and improved hazard assessment; however, no new  research questions were added to the list of 21 key questions. With regard  to veterans’ health status, the research questions cover the prevalence  among veterans and control populations of    symptoms,    symptom complexes,   illnesses,    altered immune function or host defense,    birth defects,   reproductive problems,    sexual dysfunction,    cancer,    pulmonary symptoms,    neuropsychological or neurological deficits,    psychological symptoms or diagnoses, and    mortality.
With regard to exposure, the research questions cover    Leishmania tropica (a type of parasite),    petroleum,    petroleum combustion products,    specific occupational/environmental hazards (such as vaccines and    chemical agents,    pyridostigmine bromide (given to troops as a defense against nerve  agents), and    psychophysiological stressors (such as exposure to extremes of human  suffering).
In 2002, VA established RAC to provide advice to the Secretary of VA on  proposed research relating to the health consequences of military service  in the Gulf War. RAC, which is composed of members of the general  public, including non-VA researchers and veterans’ advocates, was tasked  to assist VA in its research planning by exploring the entire body of Gulf  War illnesses research, identifying gaps in the research, and proposing  potential areas of future research. VA provides an annual budget of about  $400,000 for RAC, which provides salaries for two full-time and one part- time employee and supports committee operating costs. RAC’s employees  include a scientific director and support staff who review published  scientific literature and federal research updates and collect information  from scientists conducting relevant research. RAC’s staff provide research  summaries for discussion and analysis to the advisory committee through  monthly written reports and at regularly scheduled meetings. RAC holds  public meetings several times a year at which scientists present published  and unpublished findings from Gulf War illnesses research. In 2002, RAC  published a report with recommendations to the Secretary of VA. It  expects to publish another report soon.
section_title: Federal Research on Gulf War Illnesses Has Decreased, and VA Has Not Collectively Analyzed Research Findings to Determine Research Needs
paragraphs: As of September 2003, about 80 percent of the 240 federally funded  research projects on Gulf War illnesses have been completed. Additionally,  funding for Gulf War-specific research has decreased, federal research  priorities have been expanded to incorporate the long-term health effects  of all hazardous deployments, and interagency coordination of Gulf War  illnesses research has diminished. Despite this shift in effort, VA has not  collectively reassessed the research findings to determine whether the 21  key research questions have been answered or to identify the most  promising directions for future federal research in this area.
subsections: section_title: Most Federal Gulf War Illnesses Research Projects Are Complete, and Funding Is Decreasing as Research Priorities Evolve
paragraphs: Since 1991, 240 federally funded research projects have been initiated by  VA, DOD, and HHS to address the health concerns of individuals who  served in the Gulf War. As of September 2003, 194 of the 240 federal Gulf  War illnesses research projects (81 percent) had been completed; another  46 projects (19 percent) were ongoing. (See fig. 2.)
From 1994 to 2003, VA, DOD, and HHS collectively spent a total of $247  million on Gulf War illnesses research. DOD has provided the most  funding for Gulf War illnesses research, funding about 74 percent of all  federal Gulf War illnesses research within this time frame. Figure 3 shows  the comparative percentage of funding by these agencies for each fiscal  year since 1994.
After fiscal year 2000, overall funding for Gulf War illnesses research  decreased. (See fig. 4.) Fiscal year 2003 research funding was about $20  million less than funding provided in fiscal year 2000.
This overall decrease in federal funding was paralleled by a change in  federal research priorities, which expanded to include all hazardous  deployments and shifted away from a specific focus on Gulf War illnesses.  VA officials said that although Gulf War illnesses research continues, the  agency is expanding the scope of its research to include the potential long- term health effects in troops who served in hazardous deployments other  than the Gulf War. In October 2002, VA announced plans to commit up to  $20 million for research into Gulf War illnesses and the health effects of  other military deployments. Also in October 2002, VA issued a program  announcement for research on the long-term health effects in veterans  who served in the Gulf War or in other hazardous deployments, such as  Afghanistan and Bosnia/Kosovo. As of April 2004, one new Gulf War  illnesses research project, for $450,000, was funded under this program  announcement.
Although DOD has historically provided the majority of funding for Gulf  War illnesses research, DOD officials stated that their agency currently has  no plans to continue funding new Gulf War illnesses research projects.  Correspondingly, DOD has not funded any new Gulf War illnesses  research in fiscal year 2004, except as reflected in modest supplements to  complete existing projects and a new award pending for research using  funding from a specific appropriation. DOD also did not include Gulf War  illnesses research funding in its budget proposals for fiscal years 2005 and  2006. DOD officials stated that because the agency is primarily focused on  the needs of the active duty soldier, its interest in funding Gulf War  illnesses research was highest when a large number of Gulf War veterans  remained on active duty after the war—some of whom might develop  unexplained symptoms and syndromes that could affect their active duty  status. In addition, since 2000, DOD’s focus has shifted from research  solely on Gulf War illnesses to research on medical issues of active duty  troops in current or future military deployments. For example, in 2000, VA  and DOD collaborated to develop the Millennium Cohort study, which is a  prospective study evaluating the health of both deployed and nondeployed  military personnel throughout their military careers and after leaving  military service. The study began in October 2000 and was awarded $5.25  million through fiscal year 2002, with another $3 million in funding  estimated for fiscal year 2003.
section_title: VA’s Coordination of Federal Gulf War Illnesses Research Has Lapsed, and VA Has Not Determined Whether Key Research Questions Have Been Answered
paragraphs: VA’s coordination of federal Gulf War illnesses research has gradually  lapsed. Starting in 1993, VA carried out its responsibility for coordinating  all Gulf War health-related activities, including research, through  interagency committees, which evolved over time to reflect changing  needs and priorities. (See fig. 1.) In 2000, interagency coordination of Gulf  War illnesses research was subsumed under the broader effort of  coordination for research on all hazardous deployments. Consequently,  Gulf War illnesses research was no longer a primary focus. The most  recent interagency research subcommittee, which is under the  Deployment Health Working Group (DHWG), has not met since August  2003, and as of April 2004, no additional meetings had been planned.
Additionally, VA has not reassessed the extent to which the collective  findings of completed Gulf War Illnesses research projects have addressed  the 21 key research questions developed by the RWG. (See app. I.) The  only assessment of progress in answering these research questions was  published in 2001, when findings from only about half of all funded Gulf  War illnesses research were available. Moreover, the summary did not  identify whether there were gaps in existing Gulf War illnesses research or  promising areas for future research. No reassessment of these research  questions has been undertaken to determine whether they remain valid,  even though about 80 percent of federally funded Gulf War illnesses  research projects now have been completed. In 2000, we reported that  without such an assessment, many underlying questions about causes,  course of development, and treatments for Gulf War illnesses may remain  unanswered.
section_title: RAC’s Efforts to Provide Advice May Be Hindered by VA’s Limited Information Sharing and Collaboration, but Several Changes to Address These Issues Have Been Proposed
paragraphs: RAC’s efforts to provide advice and make recommendations on Gulf War  illnesses research may have been impeded by VA’s limited sharing of  information on research initiatives and program planning as well as VA’s  limited collaboration with the committee. However, VA and RAC are  exploring ways to improve information sharing, including VA’s hiring of a  senior scientist who would both guide the agency’s Gulf War illnesses  research and serve as the agency’s liaison to provide routine updates to  RAC. VA and RAC are also proposing changes to improve collaboration,  including possible commitments from VA to seek input from RAC when  developing research program announcements. At the time of our review,  most of these proposed changes were in the planning stages.
subsections: section_title: RAC Officials Cite VA’s Poor Information Sharing and Limited Collaboration as Impediments in Meeting Its Mission
paragraphs: According to RAC officials, VA senior administrators’ poor information  sharing and limited collaboration with the committee about Gulf War  illnesses research initiatives and program planning may have hindered  RAC’s ability to achieve its mission of providing research advice to the  Secretary of VA. RAC is required by its charter to provide advice and make  recommendations to the Secretary of VA on proposed research studies,  research plans, and research strategies relating to the health consequences  of service during the Gulf War. (See app. II for RAC’s charter.) RAC’s  chairman and scientific director said that the recommendations and  reports that the advisory committee provides to the Secretary of VA are  based on its review of research projects and published and unpublished  research findings related to Gulf War illnesses.
Although RAC and VA established official channels of communication, VA  did not always provide RAC with important information related to Gulf  War illnesses research initiatives and program planning. In 2002, VA  designated a liaison to work with RAC’s liaison in order to facilitate the  transfer of information to the advisory committee about the agency’s Gulf  War illnesses research strategies and studies. However, RAC officials  stated that most communication occurred at their request; that is, the VA  liaison and other VA staff were generally responsive to requests but did  not establish mechanisms to ensure that essential information about  research program announcements or initiatives was automatically  provided to the advisory committee. For example, according to RAC  officials, VA’s liaison did not inform RAC that VA’s Office of Research and  Development was preparing a research program announcement until it  was published in October 2002. Consequently, RAC officials said that they  did not have an opportunity to carry out the committee’s responsibility of  providing advice and making recommendations regarding research  strategies and plans. In another instance, RAC officials stated that VA did  not notify advisory committee members that the Longitudinal Health Study  of Gulf War Era Veterans—a study designed to address possible long-term  health consequences of service in the Gulf War—had been developed and  that the study’s survey was about to be sent to study participants. RAC  officials expressed concern that VA did not inform the advisory committee  about the survey even after the plans for it were made available for public  comment.
Information sharing about these types of issues is common practice among  advisory committees of the National Institutes of Health (NIH), which has  more federal advisory committees than any other executive branch  agency. For example, a senior official within NIH’s Office of Federal  Advisory Committee Policy said that it is standard practice for NIH  advisory committees to participate closely in the development of research  program announcements. In addition, NIH’s advisory committee members  are routinely asked to make recommendations regarding both research  concepts and priorities for research projects, and are kept up-to-date  about the course of ongoing research projects.
section_title: VA and RAC Are Exploring Methods to Improve Information Sharing and Collaboration
paragraphs: In recognition of RAC’s concerns, VA is proposing several actions to  improve information sharing, including VA’s hiring of a senior scientist to  lead its Gulf War illnesses research and improving formal channels of  communication. In addition, VA and RAC are exploring methods to  improve collaboration. These would include possible commitments from  VA to seek input from RAC when developing research program  announcements and to include RAC members in a portion of the selection  process for funding Gulf War illnesses research projects. As of April 2004,  most of the proposed changes were in the planning stages.
Since the February 2004 RAC meeting, VA and RAC officials said they have  had multiple meetings and phone conversations and have corresponded  via e-mail in an attempt to improve communication and collaboration. VA  officials said they have already instituted efforts to hire a senior scientist  to guide the agency’s Gulf War illnesses research efforts and to act as  liaison to RAC. According to VA officials, this official will be required to  formally contact RAC officials weekly, with informal communications on  an as-needed basis. In addition, this official will be responsible for  providing periodic information on the latest publications or projects  related to Gulf War illnesses research.
In an effort to facilitate collaboration with RAC, VA has proposed  involving RAC members in developing VA program announcements  designed to solicit research proposals, both specifically regarding Gulf  War illnesses and in related areas of interest, such as general research into  unexplained illnesses. RAC officials stated that throughout March and  April 2004, they worked with VA officials to jointly develop a new research  program announcement for Gulf War illnesses. In addition, VA has  proposed that RAC will be able to recommend scientists for inclusion in  the scientific merit review panels. VA also plans to involve RAC in review  of a project’s relevancy to Gulf War illnesses research goals and priorities  after the research projects undergo scientific merit review. This could  facilitate RAC’s ability to provide recommendations to VA regarding the  projects that the advisory committee has judged are relevant to the Gulf  War illnesses research plan.
section_title: Concluding Observations
paragraphs: Although about 80 percent of federally funded Gulf War illnesses research  projects have been completed, little effort has been made to assess  progress in answering the 21 key research questions or to identify the  direction of future research in this area. Additionally, in light of decreasing  federal funds and expanding federal research priorities, research specific  to Gulf War illnesses is waning. Without a comprehensive reassessment of  Gulf War illnesses research, underlying questions about the unexplained  illnesses suffered by Gulf War veterans may remain unanswered.
Since RAC’s establishment in January 2002, its efforts to provide the  Secretary of VA with advice and recommendations may have been  hampered by VA’s incomplete disclosure of Gulf War illnesses research  activities. By limiting information sharing with RAC, VA will not fully  realize the assistance that the scientists and veterans’ advocates who serve  on the RAC could provide in developing effective policies and guidance for  Gulf War illnesses research. VA and RAC are exploring new approaches to  improve information sharing and collaboration. If these approaches are  implemented, RAC’s ability to play a pivotal role in helping VA reassess the  future direction of Gulf War illnesses research may be enhanced. However,  at the time of our review most of these changes had not been formalized.
Mr. Chairman, this completes my prepared statement. I would be happy to  respond to any questions you or other Members of the Subcommittee may  have at this time.
section_title: Contact and Staff Acknowledgments
paragraphs: For further information about this testimony, please contact me at (202)  512-7119 or Bonnie Anderson at (404) 679-1900. Karen Doran, John Oh,  Danielle Organek, and Roseanne Price also made key contributions to this  testimony.
section_title: Appendix I: Key Gulf War Illnesses Research Questions
paragraphs: Between 1995 and 1996, the Research Working Group (RWG) of the  interagency Persian Gulf Veterans’ Coordinating Board identified 19 major  research questions related to illnesses in Gulf War Veterans. The RWG  later added 2 more questions to create a set of 21 key research questions  that serve as a guide for federal research regarding Gulf War illnesses.  (See table 1.)
section_title: Appendix II: Charter For the VA Research Advisory Committee On Gulf War Veterans’ Illnesses (RAC)
paragraphs: This is a work of the U.S. government and is not subject to copyright protection in the  United States. It may be reproduced and distributed in its entirety without further  permission from GAO. However, because this work may contain copyrighted images or  other material, permission from the copyright holder may be necessary if you wish to  reproduce this material separately.