GULF WAR VETERANS' ILLNESSES: THE RESEARCH AGENDA TUESDAY, FEBRUARY 24, 1998 HOUSE OF REPRESENTATIVES, SUBCOMMITTEE ON HUMAN RESOURCES, COMMITTEE ON GOVERNMENT REFORM AND OVERSIGHT, Washington, DC. The subcommittee met, pursuant to notice, at 10 a.m., in room 2154, Rayburn House Office Building, Hon. Christopher Shays (chairman of the subcommittee) presiding. Present: Representatives Shays, Snowbarger, Towns, Kucinich, Allen, and Sanders. Staff present: Lawrence Halloran, staff director; Robert A. Newman, professional staff member; and Cherri Branson, minority counsel. Mr. SHAYS. I call this hearing to order and welcome our witnesses and our guests on this very important hearing, and welcome my colleagues, Mr. Towns and Mr. Sanders, as well. In our oversight report on Gulf war veterans' illnesses, adopted without dissent by the full Government Reform and Oversight Committee in November, we found the Federal research effort had been blind to scientifically important but politically inconvenient, hypotheses about neurotoxic exposures. The committee recommended shifting control of the research agenda to an agency free of the institutional biases and doctrinal restraints we found hobbling the joint Veterans' Affairs and Defense Department program. Today, we pursue and amplify that recommendation with an indepth review of the Research Working Group of the Persian Gulf Veterans Coordinating Board, the interagency body now responsible for the evaluation and selection of the epidemiological, clinical and basic research critical to the health, and hopes, of sick veterans. The process and product of their work will tell us where we have been, where we are, and where we need to go in studying the causes and cures of Gulf war veterans' illnesses. The issue today is not blame for false starts and past failures. The issue today, and every day until the discovery of effective treatments, is how to focus a 6-year-old, $115 million research program that appears to confuse motion for progress, quantity for quality, and breadth for depth. The current agenda, although lately pointed toward more probable and promising theories, still projects a diffused, confused path that stretches well over the millennial horizon. (1) Without that focus, without the discipline to ignore the deadening demands of institutional traditions and predispositions, we risk studying Gulf war veterans, literally, to death. In looking for a sharper focus and a greater sense of urgency in Federal research, we are mindful of the incremental nature of the scientific inquiry. We share the inevitable frustration of researchers and patients as nature slowly yields her secrets. Many sick Gulf war veterans present complex, difficult to diagnose symptoms and disease states. Research into similar symptomatically described illnesses in the civilian population-fibromyalgia, chronic fatigue syndrome, multiple chemical sensitivity-appears as fragmented and inconclusive as Gulf war studies to date. But we are convinced the very intractability of the problem justifies, even demands, a more keenly concentrated approach. For sick Gulf war veterans, the question is why private researchers appear to be making better progress than their Government in defining, and therefore understanding, their illnesses. They ask why studies are just beginning on wartime chemical exposures known to produce health effects at low levels in industrial settings. They ask why the starting point for so much research is psychological theory, stress, when their symptoms and pain are intensely physical. To help answer these questions, we will hear testimony from members of the Research Working Group, the General Accounting Office, and researchers who have submitted proposals for evaluation and funding. We appreciate their time and expertise, and we truly look forward to their testimony. Again, I would like to welcome our guests, those from the VA and the DOD and HHS as well as private researchers, and thank them all for being here. At this time I would recognize my partner, Mr. Towns. Mr. TOWNS. Thank you very much, Mr. Chairman. Let me begin by saying I really, really appreciate the work that you have done in this area. You have really been involved, and I thank you and the staff for bringing us to this point in time. I think this is a very important hearing, and I again thank you. Mr. Chairman, I want to also say to you that I think that we need to move in a very aggressive kind of way to make certain that the research that needs to be done is done. Anyone who follows this issue knows that this subcommittee's hearings and reports have led the way in examining the illnesses experienced by Persian Gulf war veterans. Throughout this process, our ultimate goal has been to assure that veterans receive appropriate medical care at VA clinics and hospitals. Appropriate care requires effective treatment and competent practitioners. However, both the efficacy of the treatment and the capability of the professionals are jeopardized by ineffective or inappropriate research. Without proper research concerning the cause of illnesses and development of medicines to treat the disease, the practitioners and patients are left with few options and many frustrations. Therefore, we are here today to assure that serious and substantial medical research is done to address the health problems faced by the Persian Gulf war veterans. In previous hearings we have heard critiques and defenses of the research agenda. Out of those opinions, this subcommittee reached several conclusions. In our report we made several recommendations about the future research agenda and the coordination of research efforts by all agencies involved. Essentially, we are here today to determine whether the Research Working Group has implemented those recommendations and how we can help in assuring the implementation of our suggestions and the overall success of the research effort. Mr. Chairman, I look forward to hearing from these outstanding witnesses about this very serious matter that we need to spend a lot of time on to make certain that we get to the bottom of it as fast as we possibly can. Thank you, and I yield back. Mr. SHAYS. I thank the gentleman. At this time I recognize the gentleman from Maine. We are catching you just as you walk in here, but would you like to make a statement? Mr. ALLEN. Very briefly, Mr. Chairman. I just want to say how much I appreciate your leadership on this particular issue. This subcommittee reported last fall that, in our view, the Federal Government has failed to address the chronic ill effects which have disabled and compromised the health of thousands of our Gulf war veterans. A coordinated effort in addressing the neurological disorders afflicting a growing number of servicemen and women who served in the Gulf war theater is critical, and I look forward to today's testimony by the Research Working Group and the General Accounting Office on what measures the Federal Government has taken to coordinate research efforts and the effectiveness of those efforts. I am particularly interested in learning how the Research Working Group is responding to the recommendations made by this committee. Thank you very much, Mr. Chairman. I yield back. Mr. SHAYS. Thank you, Mr. Allen. Just to get some housekeeping out of the way, I would ask unanimous consent that all members of the subcommittee be permitted to place any opening statements in the record and that the record remain open for 3 days for that purpose. Without objection, so ordered. I ask further that all witnesses be permitted to include their written statements in the record. Without objection, so ordered. At this time I will call on our panel: Dr. John Feussner, Chief Research and Development Officer, Department of Veterans Affairs, accompanied by Dr. Timothy Gerrity, Special Assistant to the Chief in the Research and Development Office, Department of Veterans Affairs. Second is testimony from Dr. Anna JohnsonWinegar, Director of Environmental and Life Sciences, Department of Defense. Dr. Drue Barrett from Environmental Hazards and Health Effects Division, Centers for Disease Control and Prevention. Also accompanied, not giving testimony but here to respond to questions in her soft voice, Dr. Sheila Newton. So we will have testimony from three and we will have five participate in the dialog. I want to just call you all doctors now. Since my wife is seeking her doctorate, I know what it involves, and so I am in awe of all of you for that. But if you would stand, I will swear you all in. [Witnesses sworn.] Mr. SHAYS. For the record, all of the witnesses have responded in the affirmative. If we could go in the way I called you, Dr. Feussner, you are first and we look forward to your testimony. What I am going to do is, I am going to have a clock on and it will be on for 5 minutes, and then I will click it on for another 5, and if you could kind of finish up in that second 5, that would be great. So good to have you. STATEMENTS OF JOHN FEUSSNER, M.D., CHIEF RESEARCH AND DEVELOPMENT OFFICER, DEPARTMENT OF VETERANS AFFAIRS, ACCOMPANIED BY TIMOTHY GERRITY, SPECIAL ASSISTANT TO THE CHIEF RESEARCH AND DEVELOPMENT OFFICER; ANNA JOHNSON-WINEGAR, DIRECTOR, ENVIRONMENTAL AND LIFE SCIENCES, DEPARTMENT OF DEFENSE; DRUE H. BARRETT, PH.D., DIVISION OF ENVIRONMENTAL HAZARDS AND HEALTH EFFECTS, NATIONAL CENTER FOR ENVIRONMENTAL HEALTH, CENTERS FOR DISEASE CONTROL AND PREVENTION, U.S. PUBLIC HEALTH SERVICE; AND SHEILA NEWTON, NATIONAL INSTITUTE OF ENVIRONMENTAL HEALTH SCIENCES, DEPARTMENT OF HEALTH AND HUMAN SERVICES Dr. FEUSSNER. Good morning, Mr. Chairman, other members of the committee. Thank you for this opportunity to discuss the status of the Federal research program on Gulf war veterans' illness. As you indicated, I serve as the Department of Veterans Affairs' Chief Research and Development Officer and chairperson of the Research Working Group of the Persian Gulf Veterans Coordinating Board. The primary charge to the Research Working Group is to assess the state and direction of research, identify potential new approaches, collect and disseminate scientifically peer-reviewed research information, and ensure that appropriate peer review and oversight are applied to research conducted and sponsored by us, the Federal Government. The Research Working Group has guided the Federal research portfolio using a number of different sources of input. These sources include results from ongoing research; various expert panels and oversight committees, such as the Institute of Medicine, the Defense Science Board, the National Institutes of Health; several congressional committees, including this congressional committee; the Presidential Advisory Committee on Gulf War Veterans' Illnesses; independent scientists; and veterans. The Research Working Group, has synthesized this advice and information into a research strategy embodied in a working plan for research on Persian Gulf veterans' illness. This morning I want to highlight three of the ongoing research efforts into Gulf war veterans' illness. Shortly after the June 1996 announcement of events at Khamisiyah, the Research Working Group met and acted to recommend funding by DOD of three proposals that had previously been deemed scientifically meritorious. The three projects are valued at approximately $2.5 million and involve investigations con |