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2 The Institute of Medicine's Persian Gulf Activities IOM has undertaken several activities focusing on the potential health implications of deployment in the Persian Gulf War and on DoD and VA responses to health concerns. The IOM Medical Follow-up Agency examined the health consequences of service in the Persian Gulf and developed recommendations for research and information systems. The first report of that group (IOM, 1995) recommended that "The VA Persian Gulf Health Registry should be limited and specific to gathering information to determine the types of conditions reported.... There should be efforts to implement quality control and standardization of data collected by the registry." The report went on to recommend that improved publicity regarding the availability of the Registry was needed. For a complete list of recommendations, see Appendix A. The second and final report of the Medical Follow-up Agency (IOM, 1996a) provides 16 recommendations, with accompanying findings, concerning research and information systems needed regarding the health consequences of service during the Persian Gulf War (see Appendix B). In 1994, DoD asked IOM to assemble a group of medical and public health experts to evaluate the adequacy of the CCEP. That committee concluded that specific changes in the protocol would help increase its diagnostic yield but that, overall, the CCEP was a comprehensive effort to address the clinical needs of those who served in the Persian Gulf War. That report also stated that He CCEP was not appropriate as a research tool but that the results could and should be used to educate Persian Gulf veterans and the physicians caring for them, to improve the medical protocol itself, and to evaluate patient outcomes. (See Appendix C for a complete set of recommendations.) 19
20 ADEQUACY OF THE VA PERSIAN GULF~GISTRYAND UCAP DoD asked IOM to continue its evaluation of the CCEP giving special attention to three issues: (1) approaches to addressing difficult-to-diagnose individuals and those with ill-defined conditions, (2) the diagnosis and treatment of stress and psychiatric conditions, and (3) the assessment of health problems of those who may have been exposed to low levels of nerve agents. A report addressing the adequacy of the CCEP relative to nerve agents was released in April 1997 (IOM, 1997~. It concluded that, overall, the CCEP provides an appropriate screening approach to the diagnosis of neurological diseases and conditions but that certain refinements would enhance the program. (See Appendix D for a complete set of recommendations.) The issues of medically unexplained conditions and stress and psychiatric disorders were addressed in a separate and final report. That report concluded that information provided over time has led to the ability to focus CCEP evaluation efforts on emerging areas of importance. To that end the committee made several suggestions including the need to emphasize treatment of symptoms, whether or not a diagnosis has been determined; the need to provide increased screening for depression, traumatic exposure, and substance abuse; the importance of conducting an evaluation across facilities to determine consistency in terms of examinations and patterns of referral; and the need for greater communication between DoD and VA, particularly as it relates to the ongoing treatment of patients. A complete set of recommendations appears in Appendix E. In September 1996, VA asked IOM to convene a panel of experts to fulfill the congressional mandate to review the VA Persian Gulf protocol and its implementation. Specific areas to be addressed included the adequacy of (1) the protocol to address the wide range of medical assessment needs of Persian Gulf veterans, (2) the implementation of the protocol and administration of the program, (3) outreach efforts to inform veterans of available services, and (4) education of providers. Over the course of the project the committee heard presentations and reviewed written material provided by representatives of VA, the Presidential Advisory Committee, the General Accounting Office, the American Legion, aIld Disabled American Veterans. In addition, the committee reviewed the VA manual and protocol for the Persian Gulf Registry and UCAP; received reports of the health and research activities being undertaken in Britain and Canada regarding their Persian Gulf War veterans; examined the relevant scientific literature; solicited written input from national veterans organizations aIld all VA health facilities; conducted site visits to three VA facilities; and received staff updates on testimony, research, quality assurance activities, and other information related to the health of Persian Gulf veterans. This report contains the findings and recommendations of that committee.