Appendix A
Presidential Advisory Committee on Gulf War Veterans' Illnesses: Final Report Recommendations*

RECOMMENDATIONS

The Committee's evaluation of the government's response to concerns about Gulf War veterans' illnesses led us to findings in outreach, medical and clinical issues, research, chemical and biological weapons, and coordination. Based on our analyses and these findings, the Committee makes the following recommendations:

Outreach

  • DOD and VA should follow the model of field-based outreach demonstrated in the Vet Centers and the Persian Gulf Family Support Program when developing health education and risk communication campaigns for active duty service members, Reserve and National Guard personnel, and other veterans. General, less specific outreach methods-e.g., hotlines and public service announcements-should be viewed as important supplements, but not as replacements.
  • VA should direct its Transition Assistance Program workshop benefits counselors to specifically mention DOD and VA programs related to Gulf War veterans' illnesses.

*  

This appendix has been excerpted from the Presidential Advisory Committee on Gulf War Veterans' Illnesses report, Presidential Advisory Committee on Gulf War Veterans' Illnesses: Final Report,  Washington, D.C.: U.S. Government Printing Office, 1996.



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--> Appendix A Presidential Advisory Committee on Gulf War Veterans' Illnesses: Final Report Recommendations* RECOMMENDATIONS The Committee's evaluation of the government's response to concerns about Gulf War veterans' illnesses led us to findings in outreach, medical and clinical issues, research, chemical and biological weapons, and coordination. Based on our analyses and these findings, the Committee makes the following recommendations: Outreach DOD and VA should follow the model of field-based outreach demonstrated in the Vet Centers and the Persian Gulf Family Support Program when developing health education and risk communication campaigns for active duty service members, Reserve and National Guard personnel, and other veterans. General, less specific outreach methods-e.g., hotlines and public service announcements-should be viewed as important supplements, but not as replacements. VA should direct its Transition Assistance Program workshop benefits counselors to specifically mention DOD and VA programs related to Gulf War veterans' illnesses. *   This appendix has been excerpted from the Presidential Advisory Committee on Gulf War Veterans' Illnesses report, Presidential Advisory Committee on Gulf War Veterans' Illnesses: Final Report,  Washington, D.C.: U.S. Government Printing Office, 1996.

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--> VA should ensure that its initiatives under the Women Veterans Health Programs specifically provide information about Gulf War-related programs. VA should ensure that its outreach to Latino populations specifically provides information about Gulf War-related programs. As the Committee stated in its Interim Report, DOD and VA should develop and utilize more refined performance measures to determine how well outreach services are reaching concerned parties. DOD and VA officials (specifically those in the American Forces Information Service and its broadcasting arm, the Armed Forces Radio and Television Service) using media products for outreach initiatives should be aware of the difficulty in enumerating the actual readership and viewership figures and be concerned about how effectively their message saturates the targeted population. DOD should reissue its Internal Information Plan on Gulf War-related illnesses. It should make a special effort to note the revision provides the tollfree number and that individuals are encouraged to register for its Comprehensive Clinical Evaluation Program. It also should take this opportunity to provide updated information. In an attempt to increase veterans' and the public's awareness and understanding of the full range of the government's commitment to addressing the nature of Gulf War veterans' illnesses, DOD and VA should reevaluate the goals and objectives of their risk communication efforts. DOD and VA should develop effective methods that provide the affected community with comprehensive information concerning possible exposures to environmental hazards, potential health effects from risk factors, and explanations of ongoing and completed clinical and epidemiologic studies. DOD and VA should immediately develop and implement a comprehensive risk communication plan. This effort should move forward in close cooperation with agencies that have a high degree of public trust and experience with risk communication, such as the Agency for Toxic Substances and Disease Registry and the National Institute for Occupational Safety and Health. Because health risk information and education applies to service members who remain on active duty, members of the Reserves and National Guard, and veterans no longer in military service, DOD and VA should closely coordinate the federal government's risk communication effort for Gulf War veterans and other members of the affected community. Departmental commitments to any plan should be viewed as continuous and long-term; a sustained effort is particularly critical in light of veterans' and public skepticism arising from the recent revelations related to chemical weapons. In its coordinated risk communication plan, DOD and VA should engage veterans service organizations as intermediaries-and include personnel in leadership positions, such as senior enlisted personnel (for active duty military)

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--> and state veterans' service officials-in the effort to establish an efficient information exchange process where veterans receive accurate information and the departments receive valuable feedback on clinical programs, health concerns, and communication efforts. Medical and Clinical Issues Given that the Food and Drug Administration's (FDA) Interim Final Rule permitting a waiver of informed consent for use of unapproved products in a military exigency is still in effect, DOD should develop enhanced orientation and training procedures to alert service personnel they may be required to take drugs or vaccines not fully approved by FDA if a conflict presents a serious threat of chemical and biological warfare. FDA should solicit timely public and expert comment on any rule that permits waiver of informed consent for use of investigational products in military exigencies. Among the areas that specifically should be revisited are: adequacy of disclosure to service personnel; adequacy of recordkeeping; long-term followup of individuals who receive investigational products; review by an institutional review board outside of DOD; and additional procedures to enhance understanding, oversight, and accountability. DOD officials at the highest echelons, including the Joint Chiefs of Staff and the Commander in Chief, should assign a high priority to dealing with the problem of lost or missing medical records. A computerized central database is important. Specialized databases must be compatible with the central database. Attention should be directed toward developing a mechanism for computerizing medical data (including classified information, if and when it is needed) in the field. DOD and VA should adopt standardized recordkeeping to ensure continuity. The Persian Gulf Veterans Coordinating Board and other appropriate departments and agencies should be charged to develop a protocol to implement the following recommendation, which was made in the Committee's Interim Report: Prior to any deployment, DOD should undertake a thorough health evaluation of a large sample of troops to enable better postdeployment medical epidemiology. Medical surveillance should be standardized for a core set of tests across all services, including timely postdeployment followup. VA and DOD should, in their educational outreach programs, specifically target staff members not directly involved in the care of Gulf War veterans. DOD and VA should include timely updates on the Comprehensive Clinical Evaluation Program or Persian Gulf Health Registry, respectively, in their Continuing Medical Education programs.

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--> VA and DOD should regularly brief their staffs on the Gulf War research portfolio and on the results of research studies as they become available. VA and DOD should regularly review staffing needs, particularly in mental health, and increase recruitment and retention of adequate numbers of medical professionals to satisfy patient needs. Staffing reviews should consider that, despite increased medical surveillance and better preventive measures, future deployments also will generate a significant number of veterans who will need care for illnesses that are difficult to diagnose. Since 1986, U.S. service members with certain chronic illnesses, e.g., asthma and diabetes, have been allowed to remain on active duty when regular medical monitoring is necessary. Veterans of the Gulf War with chronic illnesses are no different. Troop commanders should be reminded that adequate time off for follow-up medical appointments is a necessity and a priority. The government should conduct a thorough review of its policies concerning reproductive health and seek statutory authority to treat veterans and their families for service-connected problems. When indicated, genetic counseling should be provided-either via VA treatment facilities or assist veterans and their families who have reproductive concerns stemming from military service. The government should continue and intensify its efforts to develop stress reduction programs for all troops, with special emphasis on deployed troops. Since leadership and unit cohesion are so important in managing stress, DOD should specifically involve senior commanders and senior noncommissioned officers in stress management programs. Research The Research Working Group of the Persian Gulf Veterans Coordinating Board should require that any proposals for new, large-scale Gulf War veterans' epidemiologic health research describe a plan to incorporate a public advisory committee into the study design, dissemination of results, or both. The Research Working Group should consider justifying a waiver of such a committee only under rare circumstances. The government should develop more accurate and reliable methods of recording troop locations to facilitate postconflict health research in the future. DOD should make full use of global positioning technologies. The government should plan for further research on possible long-term health effects of low-level exposure to organophosphorus nerve agents such as sarin, soman, or various pesticides, based on studies of groups with well characterized exposures, including: (a) cases of U.S. workers exposed to

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--> organophosphorus pesticides; and (b) civilians exposed to the chemical warfare agent sarin during the 1994 and 1995 terrorist attacks in Japan. Additional work should include followup and evaluation of an appropriate subset of any U.S. service personnel who are presumed to be exposed during the Gulf War. The government should begin by consulting with appropriate experts, both governmental and nongovernmental, on organophosphorus nerve agent effects. Studies of human populations with well-characterized exposures will be much more revealing than studies based on animal models, which should be given lower priority. Since a number of Gulf War risk factors are potential human carcinogens that could result in increased rates of cancer beginning decades after exposure, VA should continue to monitor Gulf War veterans through its ongoing mortality study for increased rates of lung, liver, and other cancers. Depleted uranium munitions are likely to be used in future conflicts involving U.S. service personnel. To fully elucidate the health effects of depleted uranium munitions, VA should conduct research that compares the health status of individuals with embedded fragments of DU shrapnel with appropriate control groups. The government should continue to collect and archive serum samples from U.S. service personnel when feasible. The Research Working Group should more thoroughly consult with other federal agencies with relevant expertise-such as the National Institutes of Health (particularly the National Institute of Environmental Health Sciences) and the Agency for Toxic Substances and Disease Registry-on basic, clinical, and epidemiologic research and on risk communication. Chemical and Biological Weapons All U.S. service personnel assigned to units near the Khamisiyah demolition activity should be notified and encouraged to enroll in VA's Persian Gulf Health Registry or DOD's Comprehensive Clinical Evaluation Program. In determining the extent of possible chemical warfare agent exposure at Khamisiyah and any other sites that future investigations uncover, the government should use the best theoretical and practical assessment tools available. The Committee recognizes the large number of variables that can affect the outcome of any determination, but identifies the following as essential principles: Where objective, unrebutted evidence suggests the release of chemical warfare agents in the vicinity of U.S. troops, every effort should be made to identify the source of the agent and to model

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--> the downwind footprint of the potential distribution of agent at the general population exposure level (or lower threshold, if appropriate); When a downwind footprint is established, a conservative, presumptive-exposure area should be defined that reflects the uncertainties of the modeling effort. The presumptive-exposure area should, at a minimum, include all sites within a circle that has a radius equal to the length of the downwind footprint; and Troops within the presumptive-exposure area should be notified and encouraged to enroll in the CCEP or Registry. All reports of positive M256 kits and Fox detections must be thoroughly investigated. Where unit logs record positive detections by either type of equipment, members of that unit should be notified and encouraged to enroll in VA's Persian Gulf Health Registry or DOD's Comprehensive Clinical Evaluation Program. To ensure credibility and thoroughness, further investigation of possible chemical or biological warfare agent exposures during the Gulf War should be conducted by a group independent of DOD. Openness in oversight activities including public access to information and veteran participation-public notice of meetings, opportunity for public comment, and regular reporting are essential. Full public accountability is critical. Coordination A Presidential Review Directive (PRD) should be issued to instruct the National Science and Technology Council to develop an interagency plan to address health preparedness for and readjustment of veterans and families after future conflicts and peacekeeping missions. The President's Committee of Advisors on Science and Technology and other nongovernmental experts, as appropriate, should be asked to review the plan 12 months after the PRD is issued and again at 18 months to ensure national expertise is brought to bear on these issues.