Presidential Advisory Committee on Gulf War Veterans' Illnesses
Final Report

Chapter One

INTRODUCTION

Caring for veterans is not a national option or a partisan program. It is a national tradition and a national duty. . . . There are thousands of veterans . . . who served their country in the Gulf War and came home to find themselves ill. . . . Just as we relied on these men and women to fight for our country, they must now be able to rely on us to try to determine what happened to them in the Gulf and to help restore them to full health. We will leave no stone unturned.

Approximately 697,000 men and women served in Operations Desert Shield/Desert Storm (table 1-1) from August 1990 to June 1991. Americans who fought the Gulf War differed from any force in U.S. history: There was more ethnic diversity, and there were more women, more parents, and more individuals-activated members of the Reserves and National Guard-uprooted from civilian jobs.

During the war, U.S. troops suffered 148 combat deaths and 145 deaths due to disease or accidents; 467 individuals were wounded. Even in the face of these relatively low casualty rates, national leaders anticipated some post-conflict health concerns and initiated programs to address them. The first programs focused on helping veterans readjust to civilian life and cope with the stresses of war. Lessons learned from the Vietnam era prompted officials in the Department of Defense (DOD) and the Department of Veterans Affairs (VA) to provide counseling services-from family therapy to treatment for post-traumatic stress disorder-throughout the war and through the return stateside.

Despite these efforts, some men and women began to experience debilitating illnesses soon after returning from the Gulf. Commonly reported symptoms included fatigue, muscle and joint pain, memory loss, and severe headaches. When several Gulf-deployed members of an Indiana Army National Guard unit reported these symptoms in early 1992, DOD sent in a research team to conduct an epidemiologic study; the team found no evidence of an outbreak of disease. VA contemporaneously established a health registry where Gulf War veterans could report their symptoms. Reports came in, but answers about the nature and cause of the illnesses remained elusive.

THE GOVERNMENT'S INITIAL RESPONSE

Well aware of the problems generated by mishandling Vietnam veterans' health concerns, the government took several actions to address questions about health and Gulf War service, including:

By early 1995, the clinical evaluation programs had enrolled more than 49,000 veterans and the research portfolio included more than 30 studies. Many medical and scientific experts-from inside and outside the government-had reviewed the government's efforts (figure 1-1). Still, a substantial number of Gulf War veterans did not have the answers they sought about what kind of illnesses they had, about exposures in the Gulf region that might have made them sick, or about the strength of the country's commitment to its veterans.

To make sure the government was doing all it could as quickly as it could, President Clinton issued Executive Order 12961 on May 26, 1995, to establish the Presidential Advisory Committee on Gulf War Veterans' Illnesses (appendix A). For the first time, a single body would conduct an independent, open, and comprehensive review of all facets-risks, diagnosis, treatment, and research-related to health issues and Gulf War service.

THE ADVISORY COMMITTEE

Securing a healthy future for Gulf War veterans is important to all Americans. As First Lady Hillary Rodham Clinton noted at the Committee's first meeting in Washington, DC, on August 14-15, 1995, "We owe them that much, and more." The President charged the Committee to review the full range of government activities relating to Gulf War veterans' illnesses, including:

The Committee-a 12-member panel made up of veterans, scientists, health care professionals, and policy experts (appendix C)-was directed to issue its findings and recommendations to the President through the Secretaries of Defense, Health and Human Services, and Veterans Affairs.

The President made clear his belief that only an open government is a responsive government. Thus, the Committee operated under the Federal Advisory Committee Act, conducting its business in open meetings and providing the opportunity for comment from members of the public at each event. Additionally, the Committee received written submissions for consideration throughout its process.

With the assistance of a full-time staff and consultants (appendix D), the Committee held ten full Committee meetings and eight focused panel meetings around the country from August 1995 through November 1996 (appendix E). We heard invited testimony at each meeting, and transcripts of our proceedings and other relevant information were posted on the Committee's home page on the World Wide Web. Staff held in-house expert consultations, received briefings, conducted literature surveys, interviewed veterans, and reviewed government records throughout our tenure.

On February 15, 1996, we delivered our Interim Report. In accordance with our mandate, this Final Report is being delivered by December 31, 1996.

PURPOSE AND ORGANIZATION OF THE FINAL REPORT

This document builds on the analyses of the Interim Report and reexamines that work in light of information gathered since its publication. Most importantly, the Final Report encompasses ground not previously covered-reviewing the full range of the government's efforts to address issues related to Gulf War veterans' illnesses.

This Final Report represents the Committee's best judgment on how to improve government programs targeted to Gulf War veterans' health that are, in the main, addressing the concerns of veterans. Our review of outreach, medical and clinical issues, research, and coordination resulted, principally, in findings and recommendations to help the government fine-tune its efforts. The notable exception to our generally positive report comes from our evaluation of the government's efforts to investigate possible exposures of veterans to chemical and biological warfare agents. In this instance we intend our recommendations to be constructive, but the Committee's findings are severe and unequivocal.

The Committee's conclusions appear in three broad chapters. Within each chapter, the Committee outlines the framework that shaped its inquiry; describes background material it uncovered through testimony, document reviews, and interviews; makes findings based on its investigations; and offers recommendations we believe can improve the government activities under review. The Executive Summary distills our findings and recommendations.

In chapter 2, we present our evaluation of the government's outreach, clinical, research, investigative, and coordination efforts. Chapter 2 includes an assessment of the government's response to recommendations from the Interim Report and reviews de novo issues such as risk communication, access to medical care, the scope of the government's research portfolio, the chemical and biological weapons investigation processes, and the federal government's capacity to respond to veterans' post-conflict health concerns.

Chapter 3 summarizes current data-collected through the clinical programs and from epidemiologic research-on the types of illnesses experienced by Gulf War veterans. Available data are sparse. Generalizable conclusions about the nature and extent of illness will come only from population-based epidemiologic studies that will not be completed until well after this Committee disbands. Already clearly identified, however, are important avenues for research and a continuing need for compassionate care.

The Committee's assessment of possible Gulf War risk factors for service-connected illness appears in chapter 4. We reviewed the limited data regarding the likelihood or extent of exposure to pesticides, chemical and biological warfare agents and the vaccines and drugs used to protect against them, endemic infectious diseases, depleted uranium, oil-well fire smoke and other petroleum products, and psychological and physiological stress. We examined potential health effects of these risk factors in the short- and long-term.