Presidential Advisory Committee on Gulf War Veterans' Illnesses
Final Report

APPENDIX G - FINDINGS OF THE ADVISORY COMMITTEE'S INTERIM REPORT

OUTREACH

• DOD's Persian Gulf Medical Registry Hotline and VA's Persian Gulf Helpline effectively educate callers about the availability of the CCEP and the Persian Gulf Health Registry, respectively. Both telephone systems adequately refer callers to points of contact at medical treatment facilities.
• DOD's GulfLINK offers a user friendly, accessible resource that deposits information pertinent to Gulf War veterans' illnesses in a central location.
• Since GulfLINK contains contradictory intelligence reports, the net effect of posting these declassified documents on GulfLINK could be to confuse rather than enlighten the interested public. Without a better system for organizing and presenting information, persons using the resource could gain false impressions or misunderstand documents.
• Although mailings such as the memorandum from Secretary Perry and Chairman Shalikashvili can be expensive, they are a reasonable method of getting information to the concerned population.
• VA's On-line service and World Wide Web home page provide computer users with a widely accessible Gulf War veterans' illness education and referral resource.
• VA's print PSA gives readers useful information on Gulf War veterans' illnesses. VA's broadcast PSAs, which publicize the Helpline number but do not mention illness or potential illness as a reason to call, need improvement.
• VA's use of the term "priority care" in reference to Gulf War veterans' eligibility for health care creates false expectations among a significant portion of its clientele.
• Public and congressional concern for the health of Gulf War veterans has been evident since the world witnessed the 1991 oil well fires on television. DOD did not set up hotlines or sites at medical treatment facilities to provide information and medical referral services to Gulf War veterans until 1994, a significant delay in response time.
• VA's Helpline started late in comparison with its other efforts to address the issue of Gulf War veterans' illnesses. It was established two years after the initiation of the Persian Gulf Health Registry and one year following the passing of Public Law 103-210, which initiated "priority care" services. VA had conducted some outreach in tandem with the establishment of the Health Registry, but its Persian Gulf Review newsletter was sent only to those already participating in the Health Registry.

MEDICAL AND CLINICAL ISSUES

• No uniformity existed among the services in their predeployment or demobilization policies and procedures at the time of Operations Desert Shield/Desert Storm.
• There is little evidence that quality control procedures were employed to ensure that existing policies were actually carried out during deployment or demobilization.
• DOD's policies and procedures were not adequate in all cases to prevent members with preexisting conditions from deploying or to identify health problems extant at the time of demobilization, and these conditions could have contributed to some current health concerns.
• FDA and DOD undertook an urgent and orderly course of action under the circumstances to devise a means to address the real threat of chemical and biological warfare in the Gulf War.
• FDA has not been proactive in addressing public comments on the interim final rule or in devising better long-term methods for governing military use of drugs, vaccines, devices, and antibiotics intended for chemical and biological warfare defense.
• When a waiver of informed consent is granted, the government has a strong obligation to conduct long-term followup of military personnel who receive investigational products.
• DOD did not keep adequate records on who received anthrax and BT vaccines and PB in the Gulf War theater. There is little possibility now of developing reliable data about which or how many persons received those products.
• DOD and VA admit to problems with missing or lost medical records, but neither system appears to place a priority on correcting these problems.
• DOD's rationale for the requirement that records of vaccinations be kept secret was not well understood. This requirement confused and complicated recordkeeping procedures and hindered systematic followup of health issues.
• The issue of accurate medical and vaccination records is central to the concerns of many ill veterans, and the absence of records has been suggested by some as evidence that the government is engaging in a cover-up of its own predeployment practices.

RESEARCH

• Despite the unique features of the Gulf War, it should be possible using epidemiologic approaches to determine whether Gulf War veterans have more or less mortality, symptoms, or diseases than an appropriately chosen comparison population.
• Most of the studies examined by the Committee appear to be well-designed and appropriate to answer questions about mortality, symptoms, or diseases.
• Some studies currently underway or planned at best will add little information to other better designed studies and could provide misleading information, leading to false conclusions.
• External scientific review of the major epidemiologic studies has ranged from nonexistent, to one-time review of protocols, to standing scientific advisory panels which have an ongoing role in the design and execution of the studies. Ongoing external review has proved beneficial to several of the studies.
• Public advisory committees might improve communications with the veterans asked to participate in epidemiologic studies.
• A single coordinating body with an overarching perspective is needed to monitor whether priorities are being established, whether outstanding research questions are being adequately addressed, whether individual studies will contribute to the overall effort, and the extent to which the studies are responsive to recommendations from external reviewers.
• Sharing a subset of basic questions on demographics, symptoms, and exposures across large surveys of Gulf War veterans and controls could provide information useful for comparisons across the studies and better understanding of differences in the study populations.
• There is little exposure data available for Gulf War veterans about many key risk factors. As a consequence, it will be more difficult to link adverse health outcomes detected by epidemiologic studies to some specific exposures or risk factors.
• The Persian Gulf Registry of Unit Locations data from DOD will be important for investigating questions about Gulf War veterans' health issues, but it will not be a substitute for missing exposure data for many risk factors.

CHEMICAL AND BIOLOGICAL WEAPONS

• Although much was known at the time of the Gulf War, UNSCOM's work provides a more definitive picture of Iraq's CBW capability and doctrine, revealing advanced capabilities and underscoring the considerable uncertainty regarding Iraq's intentions to use CBW agents against American and coalition troops.
• The U.S. government's decision to reexamine the records of the Gulf War for evidence of exposure to CBW agents is prudent in light of the health concerns of veterans and the findings from UNSCOM's investigations. The Committee intends to monitor the investigations of PGIT and CIA.
• DOD is taking reasonable steps to improve battlefield CW agent detection capability by developing equipment that will detect mustard agent and that will not sound false alarms in response to common battlefield interferents.
• The inability to provide real-time detection of BW agents constitutes a serious deficiency in the U.S. chemical and biological defense posture.
• The ability to monitor low-levels of CW agents would improve the health care surveillance of U.S. troops.