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Clinton Presidential Records Digital Records Marker This is not a presidential record. This is used as an administrative marker by the William J. Clinton Presidential Library Staff. This marker identifies the place of a tabbed divider. Given our digitization capabilities, we are sometimes unable to adequately scan such dividers. The title from the original document is indicated below. 01/07/97: CMTE. REPORT ANNOUNCEMENT Divider Title: SCHEDULE FOR HILLARY RODHAM CLINTON TUESDAY, JANUARY 7, 1997 PAGE 2 00am GULF WAR VETERANS' ILLNESSES and STAFF w/ POTUS Oval Office WH PHOTO ONLY FORMAT: The President and HRC do a group photograph with the staff of the Presidential Advisory Committee on Gulf War Veterans' Illnesses. -- The President and HRC do individual photos with members of the Presidential Advisory Committee on Gulf War Veterans' Illnesses. 12 : 00pm- PRIVATE MEETING 12:30pm Residence CLOSED PRESS 12 : 30pm- PRIVATE MEETING 1:00pm Residence CLOSED PRESS 3:00pm- PRIVATE MEETING 3:15pm Residence CLOSED PRESS 3 :15pm PRIVATE MEETING 3:30pm Residence CLOSED PRESS 6:00pm- WOMEN'S LEADERSHIP FORUM RECEPTION w/ POTUS 7:30pm State Floor CLOSED PRESS FORMAT: -- The President and HRC are announced from the Green Room into the East Room and proceed to stage. HRC makes brief remarks and intros the President. The President makes remarks. SCHEDULE FOR HILLARY RODHAM CLINTON TUESDAY, JANUARY 7, 1997 PAGE 3 -- Upon conclusion of remarks, the President and HRC proceed to the Blue Room for a receiving line. -- The President and HRC depart. RON The White House WEATHER FORECAST FOR WASHINGTON, D.C.: -Partly cloudy. Wind northwest at 10 knots. Low 30. High 45. 0046 THE WHITE HOUSE WASHINGTON January 6, 1997 RECEIVE FINAL REPORT '97 JAN 6 PM9:51 PRESIDENTIAL ADVISORY COMMITTEE ON GULF WAR VETERANS' ILLNESSES DATE: January 7, 1997 LOCATION: Oval Office/Roosevelt Room TIME: 10:15 - 11:00 a.m. FROM: SAMUEL BERGER KITTY HIGGINS JACK GIBBONS I. PURPOSE To receive the final report of the Presidential Advisory Committee (PAC) on Gulf War Veterans' Illnesses. II. BACKGROUND The PAC received a broad mandate in May 1995 to review relevant research, medical treatment, outreach, risk factors, chemical and biological agent detections and interagency coordination. The final report is generally positive; however, it is quite sharp in its criticism of DOD past fact-finding related to possible chemical and biological exposures. It recommends that further investigation be conducted independent of DOD. The latter recommendation and the PAC finding that stress may be a significant contributing factor to Gulf War illnesses are likely to get press focus. You recently decided to extend the PAC through FY97 and amend its charter to encompass independent oversight of the ongoing DOD investigative process, as well as monitoring of agency implementation of all recommendations in the final report. You will issue a new Executive Order superseding the initial one signed on May 26, 1995 to accomplish this. PAC Chair Lashof has indicated that continuing the PAC in an oversight role is consistent with their recommendation of independent investigation. Your remarks will highlight your commitment to Gulf veterans, review the positive steps already taken by the departments involved, take credit for establishing the PAC, 2 praise the PAC for its contribution, promise a full Administration response in 60 days and announce two immediate initiatives. The latter provide for extension of the PAC (primarily to oversee DOD's ongoing investigation) and direct that regulatory limits on disability benefits for veterans with undiagnosed illnesses be revisited. III. PARTICIPANTS (OVAL OFFICE) The President The First Lady Dr. Joyce Lashof, PAC Chair Secretary Brown Secretary Shalala Deputy Secretary White Samuel Berger Kitty Higgins Melanne Verveer Jack Gibbons Adm. Paul Busick PARTICIPANTS (ROOSEVELT ROOM) Senator Thomas A. Daschle Senator John D. Rockefeller, IV Senator Arlen Specter Representative Lane Evans Representative Joseph P. Kennedy Representative Bob Stump Advisory Committee Members/Staff (See Tab C) Representatives of Veteran's Service Organization (VSOs) Secretary Brown Secretary Shalala Deputy Secretary White Acting Direct Tenet IV. PRESS PLAN Oval Office - closed; Roosevelt Room - White House press pool plus beat reporters who have been covering this issue. V. SEQUENCE Briefing in Oval Office followed by meeting with the PAC Chair, First Lady and Cabinet Members. Then proceed to the Roosevelt Room and the formal event will begin. When event ends proceed back to the Oval Office for photo-op session with PAC Members/Staff. 3 VI. REMARKS Provided by NSC speechwriter. Attachments Tab A E.O. 12961 of May 26, 1996, B Final Report's Transmittal Memo and Executive Summary C List of PAC Members and Staff 28507 Federal Register Presidential Documents Vol. 60, No. 104 Wednesday, May 31, 1995 Title 3- Executive Order 12961 of May 26, 1995 The President Presidential Advisory Committee on Gulf War Veterans' Illnesses By the authority vested in me as President by the Constitution and the laws of the United States of America, it is hereby ordered as follows: Section 1. Establishment. (a) There is hereby established the Presidential Advisory Committee on Gulf War Veterans' Illnesses (the "Committee"). The Committee shall be composed of not more than 12 members to be appointed by the President. The members of the Committee shall have expertise relevant to the functions of the Committee and shall not be full- time officials or employees of the executive branch of the Federal Govern- ment. The Committee shall be subject to the Federal Advisory Committee Act, as amended, 5 U.S.C. App. 2. (b) The President shall designate a Chairperson from among the members of the Committee. Sec. 2. Functions. (a) The Committee shall report to the President through the Secretary of Defense, the Secretary of Veterans Affairs, and the Secretary of Health and Human Services. (b) The Committee shall provide advice and recommendations based on its review of the following matters: (1) Research: epidemiològical, clinical, and other research concerning Gulf War veterans' illnesses. (2) Coordinating Efforts: the activities of the Persian Gulf Veterans Coordi- nating Board, including the Research Coordinating Council, the Clinical Working Group, and the Disability and Compensation Working Group. (3) Medical Treatment: medical examinations and treatment in connection with Gulf War veterans' illnesses, including the Comprehensive Clinical Evaluation Program and the Persian Gulf Registry Medical Examination Pro- gram. (4) Outreach: government-sponsored outreach efforts such as hotlines and newsletters related to Gulf War veterans' illnesses. (5) External Reviews: the steps taken to implement recommendations in external reviews by the Institute of Medicine's Committee to Review the Health Consequences of Service During the Persian Gulf War, the Defense Science Board Task Force on Persian Gulf War Health Effects, the National Institutes of Health Technology Assessment Workshop on the Persian Gulf Experience and Health, the Persian Gulf Expert Scientific Committee, and other bodies. (6) Risk Factors: the possible risks associated with service in the Persian Gulf Conflict in general and, specifically, with prophylactic drugs and vac- cines, infectious diseases, environmental chemicals, radiation and toxic sub- stances, smoke from oil well fires, depleted uranium, physical and psycho- logical stress, and other factors applicable to the Persian Gulf Conflict. (7) Chemical and Biological Weapons: information related to reports of the possible detection of chemical or biological weapons during the Persian Gulf Conflict. (c) It shall not be a function of the Committee to conduct scientific research. The Committee shall review information and provide advice and 28508 Federal Register / Vol. 60, No. 104 / Wednesday. May 31, 1995 / Presidential Documents recommendations on the activities undertaken related to the matters de- scribed in (b) above. (d) It shall not be a function of the Committee to provide advice or recommendations on any legal liability of the Federal. Government for any claims or potential claims against the Federal Government. (e) As used herein, "Gulf War Veterans' Illnesses" means the symptoms and illnesses reported by United States uniformed services personnel who served in the Persian Gulf Conflict. (f) The Committee shall submit an interim report within 6 months of the first meeting of the Committee and a. final report. by December 31, 1996, unless otherwise provided by the President. Sec. 3. Administration. (a) The heads of executive departments and agencies shall, to the extent permitted by law, provide the Committee with such information as it may require- for purposes of carrying out its functions.- (b) Members of the Committee shall be compensated in accordance with Federal law. Committee members may be allowed travel expenses, including per diem in lieu of subsistence, to the extent permitted by law for persons serving intermittently in the Government service (5 U.S.C. 5701-5707). (c) To the extent permitted by law, and subject to the availability of appropriations, the Department of Defense shall provide the Committee with such funds as may be necessary for the performance of its functions. Sec. 4. General Provisions. (a) Notwithstanding the provisions of any other Executive order, the functions of the President under the Federal Advisory Committee Act that are applicable to the Committee, except that of reporting annually to the Congress, shall be performed by the Secretary of Defense, in accordance with the guidelines and procedures established by the Admin- istrator of General Services. (b) The Committee shall terminate 30 days after submitting its final report: (c) This order is intended only to improve the internal management of the executive branch and it is not intended to create any. right, benefit or trust responsibility, substantive or procedural, enforceable at law or equity by a party against the United States, its agencies, its officers, or any person THE WHITE HOUSE, May 26, 1995. IFR Doc. 95-13484 Filed 5-30-95: 10:36 am] Billing code 3195-01-P FinalReport PRESIDENTIAL ADVISORY COMMITTEE ON GULF WAR VETERANS' ILLNESSES For sale by the U.S. Government Printing Office Superintendent of Documents. Mail Stop: SSOP. Washington. DC 20402-9328 ISBN 0-16-048942-3 Presidential Advisory Committee on Gulf War Veterans' Illnesses MEMORANDUM Chair TO: Secretary William Perry, Department of Defense Joyce C. Lashof, M.D. Secretary Donna Shalala, Department of Health and Human Services John Baldeschwieler, Ph.D. Secretary Jesse Brown, Department of Veterans Affairs Arthur Caplan, Ph.D. RE: Major Thomas P. Cross Final Report Admiral Donald Custis, M.D. (Ret.) DA: December 31, 1996 David A. Hamburg, M.D. James A. Johnson On behalf of the Presidential Advisory Committee on Gulf War Veterans' Illnesses, I am pleased to Major Marguerite Knox, M.N. transmit our Final Report. Over the past 16 months, the Committee has analyzed the full range of the Philip Landrigan, M.D. government's outreach, medical care, research, chemical and biological weapons, and coordination Elaine L. Larson, Ph.D. Rolando Rios, Esq. activities pertinent to Gulf War veterans' illnesses. We also investigated short- and long-term health effects of Gulf War risk factors. Andrea Kidd Taylor, Dr.P.H. Together with our February 1996 Interim Report, we make several recommendations we believe can Executive Director Robyn Y. Nishimi improve our government's approach to addressing the concerns of the men and woman who served our country during Operations Desert Shield/Desert Storm. We emphasize, however, that in the main these Deputy Director/Counsel are suggestions to fine-tune the government's programs on Gulf War health matters. The Committee Holly L. Gwin has concluded that in all areas save one, the government has responded with a comprehensive series of measures to address Gulf War veterans' illnesses. Many veterans clearly are experiencing medical difficulties connected to their service in the Gulf War. First and foremost, continuing to provide clinical care to evaluate and treat veterans' illnesses is vital. At the same time, however, a causal link between a single factor and the symptoms Gulf War veterans currently report remains elusive. And while the Committee finds that stress is likely to be an important contributing factor to Gulf War veterans' illnesses, the story is by no means complete: Veterans, their physicians, and policymakers clearly stand to benefit from the broad array of ongoing research. This benefit can only be achieved with a thoughtful, inclusive dialogue between veterans and your Departments. In light of public skepticism arising from recent revelations related to chemical weapons, the Committee strongly believes that a sustained risk communication effort is the only way to repair what many believe has been a breach of the government's compact with Gulf War veterans. This effort cannot begin soon enough. The Committee is pained by the current atmosphere of government mistrust that now surrounds every aspect of Gulf War veterans' illnesses. It is regrettable-but also understandable. Our investigation of the Department of Defense's efforts related to chemical weapons led us to conclude these early efforts have strained public trust in our government. Hence, evidence of possible chemical warfare agent exposures during the Gulf War must be thoroughly evaluated by a group independent of DOD. This process must be conducted in an open manner and include veterans. The Committee recognizes that in November 1996 DOD announced it was expanding its efforts related to low-level CW agent exposure. These initiatives-combined with independent, vigorous oversight-could begin to restore public confidence in the government's investigations of possible incidents of CW agent exposure. In closing, the Committee notes that in preparing this report, we relied on the generosity of hundreds of citizens committed to addressing concerns about Gulf War veterans' health. We gratefully acknowledge the significant time and effort that individuals within and outside government devoted to our effort-their contributions were invaluable. Lastly, the Committee has been fortunate to have a talented and dedicated staff: This Final Report would not have been possible without them. The Committee members, staff, and I thank you for the unique opportunity to contribute to this critically important issue. Joyce C. Lashaf Joyce C. Lashof, M.D. Committee Chair EXECUTIVE SUMMARY President Clinton established the Presidential Advisory Committee on Gulf War Veterans' Illnesses in May 1995 to ensure an independent, open, and comprehensive examination of health concerns related to Gulf War service. The Committee, a 12-member panel made up of veterans, scientists, health care professionals, and policy experts, held 18 public meetings between August 1995 and November 1996. We heard invited testimony and received public comment at each meeting. Staff held in-house consultations, received briefings, conducted literature reviews, interviewed veterans, and reviewed government documents throughout our tenure. We analyzed information on the full range of activities specified in our research, coordinating efforts, medical treatment, out- reach, reviews conducted by other governmental and nongovernmental bodies, risk factors (exposure and health effects), and chemical and biological weapons- to reach our findings and rec- ommendations. The Final Report presents the Committee's conclusions in three major parts: an evaluation of the government's response to Gulf War veterans' illnesses; an evaluation of available data on the nature of Gulf War veterans' illnesses; and an evaluation of available data on the health effects of Gulf War risk factors. Findings and recommendations specific to the needs of Gulf War veterans appear throughout the Final Report and are summarized here. The Committee's primary focus was on Gulf War veterans' illnesses, but parallels with the health concerns of Vietnam veterans became increasingly obvious over time. Thus, the Committee also decided to include in its analysis, recommendations on how to anticipate and avoid post-conflict health concerns. ADDRESSING GULF WAR VETERANS' ILLNESSES Overall, the Committee is encouraged by the government's response to the range of health-related problems experienced by Gulf War veterans. We found the Vet Centers and Persian Gulf Family Support Program established by the Department of Veterans Affairs (VA) to be effective outreach programs and recommend that these field-based initiatives serve as models for health education and risk communication campaigns. The Committee agrees with the Institute of Medicine's conclusion that the clinical evaluation pro- grams of the Department of Defense (DOD) and VA are excellent for the diagnosis of Gulf War veterans' illnesses. We found some shortcomings in the availability of treatment, particularly with regard to mental health and reproductive health, and recommend better follow-up care in these areas. Presidential Advisory Committee The Committee found that the government's research portfolio is appro- priately weighted toward epidemiologic studies and studies on stress-related - disorders that are likely to improve our understanding of Gulf War veterans' illnesses. To close gaps in the current knowledge base, we recommend addi- tional research on the long-term health effects of low-level exposures to chem- ical warfare agents and on the synergistic effects of pyridostigmine bro- mide - a chemical warfare agent pretreatment- with other Gulf War risk fac- tors. We also recommend more emphasis on basic and applied research on the body's physical response to stress. The existing knowledge base, including results from epidemiologic studies of Gulf War veterans, data from clinical evaluation and treatment programs for Gulf War veterans, and published literature from decades of toxicologic research, enabled the Committee to reach some conclusions about the nature and causes of Gulf War veterans' illnesses. We found that: among the subset of the Gulf War veteran population examined in the ongoing clinical and research programs, many veterans have illnesses likely to be connected to their service in the Gulf. current scientific evidence does not support a causal link between the symptoms and illnesses reported today by Gulf War veterans and exposures while in the Gulf region to the following environ- mental risk factors assessed by the Committee: pesticides, chemi- cal warfare agents, biological warfare agents, vaccines, pyri- dostigmine bromide, infectious diseases, depleted uranium, oil- well fires and smoke, and petroleum products. stress is known to affect the brain, immune system, cardiovascu- lar system, and various hormonal responses. Stress manifests in diverse ways, and is likely to be an important contributing factor to the broad range of physical and psychological illnesses cur- rently being reported by Gulf War veterans. Currently, the extent of service-connected illness among Gulf War vet- erans is unknown, but the Committee anticipates results from the large, population-based epidemiologic studies now underway will shed light on this issue. In addition to the government's existing research, the Commit- tee also recommends that mortality studies of Gulf War veterans con- tinue, since some health effects, such as cancer, would not be expected to appear until a decade or more after the end of the Gulf War. Although somewhat slow to act at the end of the Gulf War, the govern- ment is now providing appropriate medical care to Gulf War veterans and has initiated research in the areas most likely to illuminate the causes of their illnesses. The Committee identified ways to fine-tune those efforts, but found that, for the most part, the government has acted in good faith to address veterans' health concerns. The Committee takes issue with the government's performance in one key area: investigation of possible exposures of U.S. troops to chemical Final Report and biological warfare agents in the Gulf. We found substantial evidence of site-specific, low-level exposures to chemical warfare agents. Moreover, we found DOD's investigations to date superficial and unlikely to provide credi- ble answers to veterans' and the public's questions. DOD's failure to seriously investigate chemical warfare agent exposures also adversely affected deci- sions related to funding research into possible health effects of low-level ex- posures to chemical warfare agents. At the Committee's final meeting in November 1996, DOD announced plans to revamp its investigatory and re- search programs related to low-level chemical warfare agent exposure. The Committee believes these efforts-combined with independent, high-quality oversight-could begin to restore public confidence in the government's in- vestigations of possible incidents of chemical warfare agent exposure. Given that these steps come too late for the Committee to evaluate, however, we emphasize the importance of the following recommendation: 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 meet- ings, opportunity for public comment, and regular reporting are essential. Full public accountability is critical. The government has a significant amount of ground to recover with Gulf War veterans and the American public, who have come to question whether a lack of data-on possible chemical warfare agent exposures, on the pre- or post-deployment health of veterans, or on the location of troops in- theater-indicates a lack of commitment to veterans' health. We recognize the many laudatory actions taken to address the concerns of Gulf War veter- ans, but the Committee believes the government can do a better job of antici- pating and avoiding these types of problems. We offer the following find- ings and recommendations in that spirit. AVOIDING POST-CONFLICT HEALTH CONCERNS The Committee was impressed by the professionalism of the individuals re- sponsible for the government services we evaluated. We believe the exper- tise needed to improve technical performance and implement policy and procedural changes resides within the government, but we also believe that DOD and VA have much to learn from their peers in other agencies. There- fore, the Committee recommends that: A Presidential Review Directive (PRD) be issued to instruct the National Science and Technology Council (NSTC) to develop an interagency plan to address health preparedness for and readjust- ment of veterans and families after future conflicts and peacekeep- ing missions. The President's Committee of Advisors on Science and Technology and other nongovernmental experts, as appropri- ate, should be asked to review the plan 12 months after the PRD is Presidential Advisory Committee issued and again at 18 months to ensure national expertise is brought to bear on these issues. The NSTC's agenda should include the following recommendations for better communication, data, and services, which were developed during the Committee's evaluation of issues related to Gulf War veter- ans' illnesses (see Final Report, chapters 2-4). Better Communication Clearly, the volunteers who serve in defense of our Nation deserve complete and accurate information about the risks they face. An open democracy de- mands that the public, as well, has the opportunity to engage in policy de- bates that accompany the commitment of troops abroad. Therefore, the Com- mittee recommends that: DOD and VA immediately develop and implement a comprehen- sive 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. FDA solicit timely public and expert comment on any rule that per- mits 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 in- vestigational products; review by an institutional review board out- side of DOD; and additional procedures to enhance understanding, oversight, and accountability. Better Data Many of the health concerns of Gulf War veterans may never be resolved fully because of the lack of data. The Committee identified problems related to missing medical records, the absence of baseline health data, inaccurate records of troop locations, and incomplete data on the health effects of what should have been viewed as reasonably anticipated risks. To help prevent similar problems in the future, we recommend that: DOD officials at the highest echelons, including the Joint Chiefs of Staff and the Commanders in Chief, 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 in the field (including classi- fied information, if and when it is needed). DOD and VA should adopt standardized recordkeeping to ensure continuity. Final Report the Persian Gulf Veterans Coordinating Board and other appropri- ate departments and agencies 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. the government develop more accurate and reliable methods of recording troop locations to facilitate post-conflict health research. DOD should make full use of global positioning technologies. the government 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 organophosphorous 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 ap- propriate experts, both governmental and nongovernmental, on organophosphorus nerve agent effects. Studies of human popula- tions with well-characterized exposures will be much more reveal- ing than studies based on animal models, which should be given lower priority. the government continue to collect and archive serum samples from U.S. service personnel when feasible. research on possible causes and methods of prevention of ex- cess mortality from external causes among veterans receives high priority. the government consider methods for routinely sampling military populations regarding reproductive health so that an appropriate baseline exists for evaluating reproductive outcomes following de- ployment. In particular, DOD should consult with the National Center for Health Statistics and strongly consider implementing its National Survey of Family Growth and related methodologies for collecting data. the entire federal research portfolio place greater emphasis on ba- sic and applied research on the physical effects of stress and on stress-related disorders. Presidential Advisory Committee Better Services The Nation has long provided care to veterans for service-connected health problems. Unfortunately, the government continues to give short shrift to veterans' legitimate concerns about reproductive health, and soci- ety at large continues to stigmatize mental health concerns. Therefore, the Committee recommends that: the government conduct a thorough review of VA's policies concern- ing 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 fa- cilities or referral - to assist veterans and their families who have re- productive concerns stemming from military service. the government continue and intensify efforts to develop stress reduction programs for all troops, with special emphasis on de- ployed troops. CONCLUSION Approximately 697,000 men and women answered the call to serve in Opera- tions Desert Shield/Desert Storm. In many important ways - through medi- cal care, outreach, and research - the Nation has begun to pay its debt to these service members. It is essential, now, to move swiftly toward resolving Gulf War veterans' principal remaining concerns: How many U.S. troops were exposed to chemical warfare agents, and to what degree? A continued and sustained commitment to a healthy future for Gulf War veterans - for all current and future veterans - is a priority for all Americans. This Final Report represents the Committee's contribution to that goal. We have given our full dedication to President Clinton's charge and have appreciated the opportunity to serve Gulf War veterans and their families. 148 Presidential Advisory Committee APPENDIX C - ADVISORY COMMITTEE MEMBERS Joyce C. Lashof, M.D., Committee Chair Former Dean and Professor Emerita of the School of Public Health at the University of California at Berkeley, Dr. Lashof was Assistant Director of the Office of Technology Assessment from 1978-81 and Deputy Assistant Secretary for Health Programs and Deputy Assistant Secretary for Population Affairs at the Department of Health, Education, and Welfare from 1977-78. She served as President of the American Public Health Association from 1991-92. John Baldeschwieler, Ph.D. Professor of Chemistry and former Chair of the Division of Chemistry and Chemical Engineering at the California Institute of Technology, from 1971-73, Dr. Baldeschwieler served as Deputy Director of the White House Office of Science and Technology Policy. He is an expert on national security issues, having served on numerous scholarly panels, commissions, and committees. Arthur Caplan, Ph.D. Director of the Center for Bioethics at the University of Pennsylvania, Dr. Caplan was Director of the Center for Biomedical Ethics and Professor of Philosophy and Professor of Surgery at the University of Minnesota from 1987-94. He is an authority on ethics and medicine, and served as the first President of the American Association of Bioethics. Thomas P. Cross Currently a Major in the United States Marine Corps Reserve, Mr. Cross was activated during Operation Desert Shield/Desert Storm. He was an Assistant Operations Officer for the 6th Marine Regiment in the Gulf, where he participated in the initial attack across the Kuwaiti border in February 1991. He is the recipient of the Navy Commendation Medal with Combat "V", the Combat Action Ribbon, and the Kuwait Liberation Medal. Mr. Cross earned a B.S. in marketing from Central Connecticut State University and is continuing his education. He is currently a sales representative for Bell Industries in Meriden, Connecticut. Donald Custis, M.D. Senior Medical Advisor to the Health Policy Department of the Paralyzed Veterans of America, Dr. Custis served from 1980-84 as Chief Medical Director for the Veterans Administration, having joined VA in 1976. During his career, he served as Commanding Officer of the Naval Combat Hospital in Danang, Vietnam (1969), followed by command of the National Naval Medical Center in Bethesda, Maryland. He retired in 1976 as the U.S. Navy Surgeon General, with the rank of Vice Admiral. David A. Hamburg, M.D. President of the Carnegie Corporation, Dr. Hamburg was President of the Institute of Medicine, National Academy of Sciences from 1975-80, and Director of the Division of Health Policy Research and Education and John D. MacArthur Professor of Health Policy at Harvard University from 1980-82. He served as President, then Chairman of the Board, of the American Association for the Advancement of Science, between 1984-86. Final Report 149 James A. Johnson tattending Chairman and Chief Executive Officer of FANNIE MAE in Washington, DC, Mr. Johnson was a managing director at Lehman Brothers from 1985-90, and Executive Assistant to Vice President Walter Mondale from 1977-81. He is Chairman of the John F. Kennedy Center for the Performing Arts, and Chairman of the Board of Trustees of the Brookings Institution. He also serves on the Boards of the Carnegie Endowment for International Peace and the Carnegie Corporation. Marguerite Knox, M.N., R.N.C., C.C.R.N. Clinical Assistant Professor at the College of Nursing of the University of South Carolina in Columbia, Ms. Knox is nationally certified as an Adult/Acute Care Nurse Practitioner. She is a Major in the South Carolina Army National Guard and served with the U.S. Army Nurse Corps during Operations Desert Shield/Storm; she was stationed with the 251st Evacuation Hospital at King Khalid Military City in Saudi Arabia. From 1985-1993, she worked in critical care and vascular nursing at the William Jennings Bryan Dorn Veterans Hospital in Columbia, South Carolina. Philip J. Landrigan, M.D., M.Sc. Ethel T. Wise Professor and Chairman, Department of Community Medicine and Professor of Pediatrics at the Mount Sinai School of Medicine in New York, Dr. Landrigan is an expert on toxic environmental and occupational exposures. He is Editor-in-Chief of the American Journal of Industrial Medicine and former Editor-in-Chief of Environmental Research. In 1988, he served as Chair of the science committee that reviewed the health effects of Agent Orange for the American Legion. Dr. Landrigan served as an epidemiologist with the Centers for Disease Control and Prevention from 1970-1985. He is a Lieutenant Commander in the United States Naval Reserve. Elaine L. Larson, Ph.D., R.N., F.A.A.N., C.T.C. Dean of the Georgetown University School of Nursing and Associate Director of Nursing, Georgetown Hospital, Dr. Larson also currently serves on the Governing Council of the Institute of Medicine and as Editor of the American Journal of Infection Control. From 1985-92, she was Professor and Nutting Chair in Clinical Nursing and Director of the Center for Research at Johns Hopkins University School of Nursing. Dr. Larson has been a consultant in infection prevention and nursing in Australia, Brazil, Egypt, Ghana, Jordan, Kuwait, Peru, Singapore, and Spain. Rolando Rios Personal injury and civil rights attorney in private practice in San Antonio, Texas, Mr. Rios served in the U.S. Army from 1969-72. He earned the rank of First Lieutenant and was disabled while serving in Cam Ranh Bay during the Vietnam War. Andrea Kidd Taylor, Dr.P.H. An industrial hygienist and occupational health policy consultant for the International Union, United Automobile, Aerospace and Agricultural Implement Workers of America (UAW) in Detroit, Michigan, Dr. Taylor also is a health representative on the National Advisory Committee for Occupational Safety and Health. From 1984-87, she was an industrial hygiene consultant for the Maryland Committee on Occupational Safety and Health. 150 Presidential Advisory Committee APPENDIX D - ADVISORY COMMITTEE STAFF AND CONSULTANTS Executive Director Robyn Y. Nishimi, Ph.D. Deputy Director/Counsel Holly L. Gwin, Esq. Director of Public Affairs Gary L. Caruso Research Staff Joseph S. Cassells, M.D., M.P.H. - Senior Advisor for Medical and Clinical Affairs Kathi E. Hanna, M.S., Ph.D. - Senior Advisor for Policy and Reproductive Health Kelley A. Brix, M.D., M.P.H. - Senior Policy Analyst Mark A. Brown, Ph.D. - Senior Policy Analyst Miles W. Ewing - Special Assistant and Coordinator, Public Affairs¹ Lois M. Joellenbeck, Dr.P.H. - Senior Policy Analyst Michael E. Kowalok, M.A. - Policy Analyst and Coordinator, Subcommittee Affairs John D. Longbrake - Research Analyst and Coordinator, Public Affairs Thomas C. McDaniels, Jr. - Policy Analyst Joan P. Porter, M.P.H., D.P.A - Senior Policy Analyst Nicole M. Stern - Research Analyst James C. Turner, Esq. - Senior Policy Analyst Administrative Staff Carol A. Bock, Executive Assistant Barbara A. Bradley - Conference and Travel Services/Technical Editor Michael R. Brown - Administrative Services Philip B. Jackson - Telecommunications and Computing Services² Barbara V. Ketchum - Administrative Secretary Vincent E. McCall, Jr. - Telecommunications and Computing Services Debra J. McCurry - Information and Reference Services M. Cecile Parker - Administrative Officer Linda S. Rayford - Desktop Publishing/Word Processing Specialist Tracy C. Smith - Administrative Secretary Other Contributors Mary Lou Higgs Susan J. Hoffmeyer Timothy E. Phillips, Esq. Jonathan B. Tucker, Ph.D. not attending I Through August 1996 2 Through April 1996 January 6, 1997 MEMORANDUM TO THE FIRST LADY FROM: MELANNE VERVEER RE: GULF WAR SYNDROME EVENTS You have participated in the following events/meetings concerning the Gulf War Illnesses and the establishment of the President's Advisory Committee: Jan., Feb., and March 1995: You convened meetings with: Secretaries Deutch and Brown; senior Administration officials from the Departments of Health and Human Services, Veterans Affairs, and Defense; representatives from VFW and the American Legion; and the National Security Council. February 16, 1995: You visited Washington's VA Hospital with Secretary Jesse Brown and held a discussion with veterans. February 22, 1996: You visited Walter Reed Army Medical Center with Secretary Deutch, held a discussion with veterans and attended a meeting of the Gulf War Research Committee. February, 1995: You reported to the President on your activities concerning the issue of Gulf War illnesses. (Memo attached) August 14, 1995: You testified before the PAC on Gulf War Veterans Illnesses at its first meeting. DRAFT February 10, 1995 MEMORANDUM FOR THE PRESIDENT FROM: THE FIRST LADY You asked me to look into the issue of Gulf War illnesses as a result of the letters the White House has been receiving, as well as the concerns directly raised with you by citizens. Many Gulf War veterans, it seems, have been left with the terrible impression that their country has forgotten them. I wanted to let you know what I have learned in the last several weeks, as I have been consulting with key government officials, Gulf War veterans and their families, and outside advocates. What I have found is that this remains a complex and elusive problem, frustrating both to those who suffer from debilitating illnesses and to the government officials working to address their problems. Background Information: There were 697,000 U.S. troops that served in the Persian Gulf War in 1990-91. Many had flu-like symptoms when they were there and after they came home, but it wasn't until more than a year later that concerns were raised about chronic illnesses by hundreds, and then thousands of PGW veterans, some of whom are still on active duty. Of particular concern are a variety of unexplained symptoms that do not fit any neat diagnosis. Symptoms of the undiagnosed or "mystery illnesses" are varied, including chronic fatigue, memory loss, rashes, difficulty with sleeping, gastrointestinal disorders, allergies, respiratory problems, recurrent infections, headaches, joint pain, nasal discharge, tumors, and unusual bleeding. Nobody knows what has caused these symptoms and it is likely that there are several causes, some of which may interact with each other. For example, if exposure to a chemical agent lowered a soldier's immune response, he or she would be more susceptible to infectious agents. The list of possible causes includes exposures to: toxic by-products from oil fires or tent heaters; depleted uranium; unapproved vaccinations and anti-nerve gas compound (pyridostigmine) ; ; infectious agents (leishmaniasis, malaria, brucellosis, giardiasis) ; chemical and biological warfare; pesticides; microwaves; and special paints and solvents. 2 An alternative explanation is post-traumatic stress disorder or stress. What is particularly unusual is the growing number of reports of spouses and children who also appear to be ill with similar symptoms, as well as reported miscarriages and birth defects. Thus far, no well designed studies have been conducted to determine whether Gulf War veterans are more likely to have family members with these problems than other veterans. However, the VA and CDC have examined this issue with the limited data that are currently available, and they believe that there is no evidence to support these complaints. VA and DOD Registries PL 102-585 directed VA to establish a Persian Gulf War Veterans' Health Registry that could easily be cross-referenced with a Department of Defense (DoD) registry that had been previously established under the National Defense Authorization Act for FY 1992-1993. The purpose of the Registries was to gather information about individuals that would be useful in determining whether certain exposures or experiences (especially oil fires) resulted in certain illnesses. Unfortunately, according to a report issued on September 30, 1993 by the Office of Technology Assessment (OTA), the VA and DoD registries are not well coordinated. Additionally, OTA indicated that the registries cannot be used to determine cause-and-effect relationships between illnesses and exposures. Because the registries were constructed with emphasis on oil fire exposure, the registries are much less useful for examining other potential exposures. Similarly, the medical testing performed through the VA Registry were not relevant to the diagnosis of disorders that have now been associated with the mystery illnesses (i.e., immune dysfunction, neurologic disease, chemical sensitivities). . Of the 697,000 U.S. troops serving in the Persian Gulf war, more than 337,500 are now veterans. Approximately 40,000 veterans are currently enrolled in the VA Registry, and 85% of them are sick. Of those studied thus far, 17% complain of fatigue, 17% have rashes, 14% have unusual headaches, 14% have muscle or joint pain, and 11% have loss of memory, and 8% have shortness of breath. It is unknown how many of these have undiagnosed illnesses. NIH Workshop on Persian Gulf War Illnesses In April 1994, several Federal agencies co-sponsored a workshop at NIH, where a panel of experts listened to testimony from Government experts, veterans, and scientists. 3 They issued a report that concluded that Gulf War veterans were suffering from undiagnosed illnesses of unknown origins, but that there was no single entity that could be reasonably called "Gulf War Syndrome." They recommended that more research be done. Recent Reports In June 1994, the Task Force on Persian Gulf War Health Effects of the Defense Science Board, chaired by Dr. Joshua Lederberg, issued its report on the possible exposure of US troops to chemical or biological weapons or other hazardous agents. The report concluded that there was no evidence that US troops were exposed to chemical or biological weapons, and that "the overall health experience of US troops in Operation Desert Storm was favorable beyond previous military precedent. " The report also recommended "substantial improvements" in medical assessments of US troops before and after deployment, to enable DOD and VA to better assess the health effects of military service. Although some of its findings received wide support, the report was criticized by veterans and Congress because some of its information was based on DoD reports that were not considered credible. For example the report stated that less than one tenth of one percent of the Gulf War troops have reported undiagnosed illnesses. Although the exact number is unknown, this number is considered by many to be unrealistically low and contributed to the perception of the report as a "DOD cover-up." Dr. Lederberg is a very well respected Nobel Laureate, but his selection was criticized because he has financial ties to DOD. PL 102-585 also required VA and DoD to contract with the Institute of Medicine's Medical Follow-up Agency (MFUA) to review existing scientific, medical, and other information on the health consequences of military service in the Persian Gulf theater of operations. The Institute of Medicine issued an interim report in January 1995. They concluded that research was needed to determine the prevalence and likely causes of Gulf War illnesses. They criticized the VA and DOD research that was underway as not adequately peer reviewed and concluded that the quality of the data was questionable. The Senate Veterans Affairs Committee, chaired by Sen. Jay Rockefeller, issued a staff report in December 1994 that concluded that investigational drugs and vaccines were inappropriately distributed to US troops during the Persian Gulf War. Prior to the war, DOD obtained permission from FDA to use pills (pyridostigmine) in a way that was not proven safe or effective and a botulism vaccine that was not proven safe or 4 effective. The report concluded that U.S. troops were not adequately informed of the possible risks of the drugs or vaccines (as required by law), and that the vaccines and drugs were used in such a way that they probably would not have provided adequate protection against biological or chemical weapons. The Senate report expressed strong concern that the pyridostigmine, which was intended to protect against chemical weapons, may have caused adverse reactions in some individuals, or may have enhanced the toxic effects of insecticides or other chemicals that were widely used in the Gulf. Sen. Donald Riegle, Jr. issued two reports claiming that allied troops were exposed to chemical warfare, resulting from scud missile attacks or U.S. military bombing of Iraq's chemical warfare plants at a time when down-winds were unfavorable. My meetings with DOD, VA and HHS In January, I met with key officials from the DoD, VA, and HHS to discuss how best the Administration can respond to the concerns that have been raised. The agencies have been very engaged in addressing this issue. They are trying to improve medical evaluations and services for Gulf War veterans, conduct research that will enable them to better understand the causes of the illnesses, and provide compensation to veterans who are disabled. I received assurances that the departments are moving quickly to implement legislative provisions that you signed into law in October and November. However, in the course of these meetings, I also learned that some of the research that the law requires to be conducted by independent researchers (such as university scientists) under grants from DoD was mistakenly being conducted by DoD. Deputy Secretary John Deutch assured me that this could be corrected, and suggested that he might ask NIH to assist DoD with a peer review system for these grants. I raised this issue with Dr. Phil Lee, the Assistant Secretary of Health at HHS, who agreed that PHS has much more expertise with peer review of grants than DOD. Agency officials report that they are doing their best under difficult circumstances and feel besieged by Congress and the media. They claim that anecdotes, while compelling, do not constitute scientific evidence, and that Congress and the media are taking these anecdotes too seriously. In contrast, well respected scientists have testified before Congress that these "anecdotes" should be considered case studies, and point out that they may well be the first sign of significant health problems that will become obvious when research is finally conducted. 5 Meeting with Veterans' Service Organization Representatives I also have had meetings with officials from the American Legion and the Veterans of Foreign Wars. Both of these meetings have been extremely helpful in helping me understand how the veterans view our Administration's role in helping Gulf War veterans. For example, I met with Steve Robertson, who is Legislative Director of the American Legion, and is himself a Gulf War veteran with multiple undiagnosed illnesses. One of his concerns was the DoD and VA view that stress was the main cause of these symptoms. He made it clear that he had experienced extreme stress in previous deployments (he gave the example of the possibility that he would have to "push the button" to launch nuclear weapons at the Soviet Union) and made it clear that his Persian Gulf experience was not at all stressful in comparison. He recited a long list of potential toxic exposures that were common in the Gulf; for example, pesticides that were sprayed everywhere, including on cooking utensils. He is very concerned that the combination of these exposures could have been much more toxic than any would have been individually. The Executive Director of the Legion, John Sommer, was clearly supportive of Steve's views. In talking to the Commander of the Veterans of Foreign Wars (Gunner Kent) and their staff, I was assured that the VFW appreciates the legislative efforts that you and the VA have made to provide medical care and compensation to Gulf War veterans. He praised this Administration's quick response, especially compared to the "15 years it took to get anything for Agent Orange." However, the VFW has conducted a survey of more than 2,000 Gulf War veterans, which found that most have undiagnosed illnesses that are not being successfully treated. (This is not a random sample, but it is worrisome nevertheless.) The VFW does not blame the VA, but they do believe that the DOD is not providing VA with the information it needs to help determine the causes of these illnesses. Veterans and Their Family Members I have received many letters from Gulf War veterans and their spouses, and have had the opportunity to speak to some of these individuals on the telephone as well. They express great frustration with VA and DOD, and they clearly feel that the government has not done enough to address this health problem and that the government has not taken their concerns seriously enough. The specter of the government cover-up of the dangers of Agent Orange for Vietnam veterans is frequently mentioned. One recurring theme is that doctors at the individual VA facilities minimize the seriousness of the patients' symptoms, are not particularly well informed about Gulf War illnesses, and sometimes even ignore the law that requires VA to provide free 6 medical care to these veterans. For example, the President of the Gulf War Veterans of Massachusetts wrote on February 9, 1995: "Veterans are bitter, and many of the ones I speak to have concluded that they are never going to get any help from the VA system. Why? First, despite the laws which have been passed, and despite Secretary Brown's convictions, Gulf veterans are still frequently refused service in VA hospitals. The VA claims system is a disaster (my own claim was lost for over a year, and 30 months have passed since I initially filed it.) One of the biggest problems which I have been trying to work with on a local basis is simple ignorance of the situation by many of the VA physicians who are treating us. During my Persian Gulf Registry exam in January 1994, the doctor who examined me had never heard of depleted uranium and did not believe me when I told him of the exposure." I have also heard from veterans who have cancer or who report that an usually high number of young Gulf War veterans have died of cancers or heart conditions. There is great fear that these fatal diseases were caused by service in the Gulf. Many veterans believe that the VA and DOD have not provided full and accurate information about deaths and diagnoses, and some staff from the agencies concur (off the record) with that assessment. I don't think that anyone knows whether there is statistical evidence of an abnormally high number of cancers or heart disease among Gulf War veterans, but it seems to me the thing to do is make sure that kind of information is available to the public, and properly analyzed by CDC. According to reports I have heard, several FOIA requests for such information have gone unanswered, or have been answered with information that is perceived to be inaccurate. Lack of Effective Treatment One of the major problems is that many of the undiagnosed illnesses do not respond to treatment. For example, some veterans complain of having diarrhea for 3 years, rashes that come and go but do not respond to treatment, or sensitivities to chemicals that make it impossible to go to gas stations or sit in hospital waiting rooms. Women who are married to Gulf War veterans report constant vaginal infections and pain related to sexual intercourse; neither the cause nor an effective treatment has been determined. VA does not provide medical care to spouses, so many of these women do not have access to medical tests or treatment. This is especially true if the veteran is too ill to work. This lack of health care makes it especially difficult to determine whether these illnesses are unusual or whether the major problem is lack of appropriate medical care. In cases where VA and DOD medical facilities have been unable to effectively treat Gulf War veterans, many veterans have sought care in the private sector. Some Gulf War veterans have 7 complained that the VA and DOD facilities are too conservative in their treatments. The countervailing point of view is that private sector doctors are taking advantage of the desperation of Gulf War veterans, by selling useless or even dangerous diagnostic tests or treatment. My staff has called scientists from across the country to learn more about the controversial treatments that Gulf War veterans are receiving in the private sector. Thus far, the experts suggest that there are no good diagnostic tools for determining chemical exposures to the brain, and that such diagnostic tools as SPECT scan and brain mapping have limited usefulness. One of the veterans who is very ill is currently going to a private facility for plasma pharesis at a cost of $15,000/month. Several experts have claimed that such a painful, dangerous, and expensive treatment would be difficult to justify except on an experimental basis. So, thus far the academic experts have made statements that are consistent with VA decisions not to use those tests and treatment. However, the usefulness of treatments that have been devised for multiple chemical sensitivity and other controversial diagnoses are more debatable. Compensation Veterans who have disabilities that are associated with military service are entitled to monthly benefits from the VA. The maximum benefit is approximately $23,000/year for a veteran who is considered 100% disabled. As of 1994 there were approximately claims filed by PGW veterans or their survivors for general VA benefits. Approximately 10% were from veterans claiming disabilities from exposure to environmental hazards, but very few of those claims were granted. This is partly a function of the lack of diagnosis for these symptoms, and partly because it is more difficult to prove that an illness is service-connected if it is not reported until after a person leaves the military (battle wounds are obviously much easier to prove when filing a claim) Thanks to the law that you signed in November (PL 103- ), veterans whose illnesses are not diagnosed will, for the first time, be eligible to receive compensation if they can prove that they are disabled as a result of military service. The first compensation checks resulting from this law should be distributed in March. However, proving disability may still be difficult, and it will be essential to monitor this program to make sure that veterans receive the compensation that they deserve. 8 Working as a Team With VA, DOD and HHS Among the VA, DOD, and HHS officials and the Gulf War veterans there is wide agreement that more targeted and coordinated research is needed. The Defense Reauthorization and the Veterans' Persian Gulf War Benefits Act that you signed in October and November include some important new research efforts, including research on the possibility that the veterans's health problems are transmissible to spouses and offspring. It is important that these efforts go forward expeditiously. The agency officials expressed their desire to work together to ensure that the needs of Gulf War veterans are met. We agreed that we must convey to the American people that the Administration recognizes that there are serious questions that need to be resolved, and we are committed to working to address them. For example, Dr. Kizer, the VA Under Secretary for Health, admitted that some VA facilities are doing a better job than others, and indicated his strong commitment to improving that situation, so that all veterans receive the care they deserve. He also is planning a major new effort to examine whether birth defects and reproductive problems are unusually prevalent among Gulf War veterans. As you said when you asked me to follow up on this issue, we must do our very best to guarantee that the concerns of our veterans who served our nation so nobly in the Gulf are addressed properly and honestly, with the compassion their cases merit. This must be our collective guiding principle. I suggested to Secretary Perry and Secretary Brown that together we visit appropriate sites, such as hospitals or research centers, to demonstrate the concern of this Administration and our commitment to working together to get answers and provide assistance to those who are suffering health problems from their service during the Gulf War. My first such visit, at the VA Medical Center in Washington, DC, is scheduled for February 14. I believe that the agencies involved are making great efforts to improve the research and services for Gulf War veterans, but that the statements made by Department officials are often perceived as defensive and less than candid. This may be partly because many of the career employees who are providing information to Department officials are themselves responsible for previous decisions. It is human nature to be reluctant to admit that mistakes might have been made; however, these mistakes were made during the previous Administrations, and we should be willing to admit that they occurred and that we must and will do better in the future. Given the enormous publicity and the increased concerns that the veterans are expressing about the 9 adequacy of the Administration response, I believe it is essential to be more open and let veterans and the American people know that we are not satisfied with the status quo. I believe we can move ahead to immediately reassure the veterans and the public by moving quickly on some new initiatives, and making those initiatives public. We need to let the American people know that we are just as concerned as they are about the veterans whose illnesses are not responding to treatment. And of course, we need to move as quickly as possible to make progress on these issues. I suggest that we consider two very public announcements in the coming weeks: A. DoD Press Conference: 1. The message needs to be that DoD is concerned that the safety of the long-term use of pyridostigmine, alone and in combination with stress, pesticides, and other toxic chemicals, was not adequately studied under the Reagan/Bush Administration prior to the Persian Gulf War. That is why new research is now underway. DoD can announce that research is underway, and that most of it will be peer reviewed, independent research. This will have implications for future soldiers, in addition to Gulf War veterans who are ill. Of course, any future use of these agents will be reviewed in light of the results. Dr. Steven Joseph could be in charge of this effort. 2. Announce that DoD has developed new policies to make sure that all service members are adequately warned about any potential side effects from any vaccines, drugs, pesticides, decontamination agents, and other toxic chemicals that they will come in contact with. Dr. Susan Bailey is the person in charge of this effort. 3. I believe that DOD should announce that they have withdrawn a request for a permanent waiver of informed consent for the use of experimental drugs. [They may still request such waivers on a case by case basis]. This could be done by Executive Order, or Secretary Perry could make the decision. B. President (and Secretary Brown) Announces: 1. You and/or Secretary Brown could request that the VA Inspector General investigate allegations that some VA facilities are not providing appropriate free medical care to Gulf War veterans as required by law. VA does not have enough investigative staff to do this, and anyway, the IG is preferable because it is independent of VA. 10 2. The VA PGW Hot Line will compile information about any reported problems regarding access to medical care or compensation, and Secretary Brown will ensure that information will be used by VA to improve those efforts. 3. The lack of mortality statistics has angered some veterans groups. The VA could announce that, in response to requests from veterans groups, the VA will analyze data from PGW veterans who have died, and CDC will work with them to evaluate whether the number of deaths or diagnoses are unusual. 4. The VA will include information about ill spouses and children, including miscarriages and stillbirths, on the PGW Health Registry starting [insert date]. VA is already including information about birth defects. This will help provide information about whether an unusually large number of these problems are occurring. Dr. Ken Kizer has also proposed an even more ambitious surveillance system for reproductive problems among veterans, which he should announce. 5. Announce that the first compensation checks for undiagnosed illnesses will be sent in March. Blue Ribbon Panel I also believe that we should consider a new "blue ribbon" panel to examine these issues. This panel should have a broader mandate than the Lederberg panel, and should not include members who have contracts or consulting relationships with DOD or VA, or the chemical industry. In order to have credibility with veterans and the public, we need to make sure that the panel includes scientific experts who have reputations as being consumer-oriented or absolutely objective. The panel should have an adequate staff that enables them to monitor the many activities of these three agencies for at least one year. We may want to consider "reinventing" the concept of a blue ribbon panel to make it less reliant on the expertise of a large number of extremely busy scientists. Unfortunately, such experts are often perceived as relying too heavily on the information provided by the agencies. Perhaps the focus should be on a small top-notch, independent investigative staff that is advised by a small number of well-respected experts, such as Admiral Zumwaldt, a medical ethicist, and a small number of scientists. CC: Leon Panetta Defense Issues: Volume 12, Number 1-- Report to the President on Gulf War Illnesses Page 1 of 13 DefenseLINK Search: Go U.S. DEPARTMENT OF DEFENSE Home Site Map Web Sites NEWS IMAGES PUBLICATIONS QUESTIONS? NEWS AMERICAN FORCES INFORMATION SERVICE News Articles DEFENSE VIEWPOINT News Releases TO: News Photos Defense Issues: Volume 12, Number 1-- Report to the President on Gulf War Illnesses The report says the government should continue to care for Live News Briefings these veterans, and next, find why they are sick -- based on existing Daily Activities scientific data, none of the risk factors commonly suspected appears to be Summary the cause. Contracts Memoranda for Volume 12, Number 1 Correspondents Press Advisories Report to the President on Gulf War Illnesses Transcripts of News Briefings Briefing Slides Remarks by President and Mrs. Bill Clinton and Dr. Joyce Lashof, chair of the President's Advisory Committee on Gulf War Illnesses, on receiving Transcripts of Background Briefings the Presidential Advisory Committee report on Gulf War illnesses, followed by questions and answers. Also, press briefing by Lashof and News Archive Coast Guard Rear Adm. Paul Busick, National Security Council staff Speeches senior director for Gulf War Illnesses, White House, both Jan. 7, 1997. Radio News News by E-mail Mrs. Clinton. Thank you, and please be seated, and welcome to the White About News House. I am pleased to see all of you here today for the presentation of Search News: this report of the Presidential Advisory Committee on Gulf War Veterans Illnesses. Go The work of this committee reflects the administration's commitment to Detailed Search Help finding answers for the thousands of brave men and women suffering from undiagnosed illnesses after serving in the Persian Gulf War. And it reflects the president's abiding commitment to being responsive to and Other News Sources responsible for our veterans and their families. Updated: 05 May 1998 Contact Us Security and Privacy I know that there are numbers who are here of the commission, and I'd Notice like them, if they would, to stand so that we could see all -- they're all standing. We appreciate very much the time and effort that went into this service. And I know firsthand how important and difficult your task has been. Over the last four years, the president and I have received many heart- wrenching letters from Gulf War veterans and family members. Many veterans and their family members said they felt that their country had forgotten them. So in the fall of 1994, the president asked me to explore the issues surrounding the health needs of Gulf War veterans and to look into the federal government's efforts to address their concerns. I met with officials from the Department of Defense, the Veterans Administration and the Department of Health and Human Services to determine if we were doing the very best we could to respond to our veterans' needs and to facilitate research into their illnesses. http://www.defenselink.mil/speeches/1997/r19970107-clinton.html 7/5/2000 Defense Issues: Volume 12, Number 1-- Report to the President on Gulf War Illnesses Page 2 of 13 I met with representatives of the American Legion and the Veterans of Foreign Wars, who shared their own observations and told me of their efforts to bring more serious national attention to these illnesses, and I visited with individual veterans, active duty soldiers and their families. At Walter Reed Hospital [Army Medical Center] and the Veterans Hospital here in Washington. I listened to veterans as they tried to describe to me what it was like to live day after day, year after year, not knowing why they had become sick. I heard stories of hard-working men and women who could no longer keep steady jobs and support their families because of their illnesses. One veteran officer who had been diagnosed as 100 percent disabled told me about the healthy and active life he had led before his tour in the Persian Gulf and about his frustration in seeking effective treatments for his systems. In February 1995, I reported to the president and the chief of staff on these findings and recommended some steps the administration could take in the future, including the creation of a blue ribbon panel to investigate these issues further. And I had the privilege of testifying at the first meeting of this committee in August 1995, and I've been following the work that has been done closely ever since. So I'm particularly gratified to be here today, and I'm also gratified that our government is making progress and being responsive in taking affirmative steps to do all that can be done on behalf of our veterans and on behalf of future members of our forces who might be put in harm's way in the future. I want to thank all who served for their persistent efforts on this committee and for considering thoroughly the diverse and strongly held opinions, theories, explanations and evidence about these illnesses. But I particularly want to thank Gulf War veterans and their families for taking the time to share their experiences with this committee. We could not have had a better chairperson of this presidential committee than the one who was persuaded to undertake this significant responsibility, and it's my pleasure now to introduce Dr. Joyce Lashof, who will tell us more about the committee's findings. Lashof. Thank you very much, Mrs. Clinton, especially for your compassion and your interest in this important issue. And thank you, Mr. President, for your very courageous leadership for wanting to get to the bottom of this issue and the effort you've made to bring this committee about. Mr. President, Secretary [of Health and Human Services Donna E.] Shalala, Secretary [of Veterans Affairs Jesse] Brown, Deputy Secretary [of Defense John P.] White and Deputy [CIA] Director [George J.] Tenet, on behalf of the advisory committee it is a pleasure for me to transmit to you this, our final report. Over the past 16 months, we have conducted a broad analysis of issues related to health consequences of Gulf War service. Our efforts to address the complexities of Gulf War veterans' illnesses would not have been http://www.defenselink.mil/speeches/1997/r19970107-clinton.html 7/5/2000 Defense Issues: Volume 12, Number 1-- Report to the President on Gulf War Illnesses Page 3 of 13 possible without the contributions of hundreds of Gulf War veterans and their families. They have served with distinction, and we thank them. Our interim and final reports make several recommendations which we believe can improve the government's approach to addressing the health concerns of veterans who served in the gulf. In all areas save one, these suggestions are to fine-tune the government's programs on gulf health matters. Overall, the government has responded with a comprehensive series of measures to resolve questions about Gulf War veterans' illnesses. Unfortunately, the positive nature of these efforts has been diminished by how the Department of Defense approached the possibility that U.S troops had been exposed to chemical weapons. It is essential now to move swiftly to resolving Gulf War veterans' principal remaining concern -- how many U.S troops were exposed to chemical warfare agents and to what degree. The committee is pained by the atmosphere of government mistrust that now surrounds every aspect of Gulf War veterans' illnesses because of these concerns. It is regrettable, but also understandable. Our investigation of DoD's efforts related to chemical and biological weapons led us to conclude the department's early efforts were superficial and lacked credibility. DoD's failure to seriously investigate these issues also adversely affected decisions related to funding research on health effects of low-level exposure to chemical warfare agents. DoD was intransigent originally in refusing to fund such research until late this year. This has done a disservice to the veterans and the public. But the committee recognizes that in November 1996, DoD announced it was expanding its investigation and research related to low-level chemical warfare agent exposure. We hope these initiatives can begin to restore confidence in DoD's investigation on chemical agent incidents. But moving beyond the specific, albeit important, topic, it is important to reiterate that many veterans clearly are experiencing health difficulties connected to their service in the gulf. First and foremost, it is vital that the government continue to provide the excellent clinical care for these veterans. Next, we must try to find why they are sick. Based on existing scientific data, none of the individual environmental Gulf War risk factors commonly suspected appears to be the cause. And while the government finds that stress is while the committee finds that stress is likely to be an important contributing factor to Gulf War veterans' illnesses, the story is by no means complete. Veterans, their physicians and policy makers clearly stand to benefit greatly from the comprehensive range of ongoing research. We believe a continued commitment to long-term studies is important. Some health effects such as cancer would not be expected to appear until a decade or more after the end of the Gulf War. Additionally, the committee recommends new research in three areas: the long-term health effects of low-level exposure to chemical warfare agents; the synergistic effect of pyridostigmine bromide with other Gulf War risk factors; and the most physical response to stress. http://www.defenselink.mil/speeches/1997/r19970107-clinton.htm 7/5/2000 Defense Issues: Volume 12, Number 1 Report to the President on Gulf War Illnesses Page 4 of 13 However, veterans and their families will realize maximum benefits from such research only through a thoughtful, inclusive dialogue between veterans and the departments. In light of current public skepticism, the committee strongly believes that a sustained risk communication effort is the only way to repair public trust. The volunteers who served in defense of our national interest deserve complete and accurate information about the risks they faced, and I am sure that we will be able to provide it to them. The committee also felt there were lessons to be learned about health matters based on Gulf War experience. We believe the government can avoid many future postconflict health concerns through better communication, better data and better services, and we make recommendations in all these areas. In closing, I would like to re-emphasize that in many important and, in some places, unprecedented ways, the nation has begun to pay its debt to the 697,000 men and women who served in Operation Desert Shield- Desert Storm. We were impressed with the research the government had already initiated to understand the nature and causes of the illnesses so many veterans suffer from. The committee hopes the same degree of commitment will be applied to the issues still outstanding. Finally, the committee gratefully acknowledges the significant time and effort that individuals within and outside government devoted to our effort. We also have been fortunate to have a talented and dedicated staff. On their behalf and on behalf of my fellow committee members, I thank you for your leadership in addressing Gulf War veterans' health concerns and for providing us with the unique opportunity to contribute to this vitally important issue. President Clinton. Thank you very much to Dr. Lashof and the members of the Presidential Advisory Committee on Gulf War Illnesses: Secretary White, Secretary Brown, Secretary Shalala, Deputy Director Tenet. I'd like to say a special word of thanks to Dr. Jack Gibbons [assostant to the president for science and director of the Office of Science and Technology Policy] for the work that he did on this. I thank Sen. [John D.] Rockefeller [IV], Sen. [Arlen] Specter, Congressman Lane Evans for their interest and their pursuit of this issue, and all the representatives from the military and veterans organizations who are here. I am pleased to accept this report. I thank Dr. Lashof and the committee for their extremely thorough and dedicated work for 18 months now. I pledge to you and to all the veterans of this country, we will now match your efforts with our action. Six years ago, hundreds of thousands of Americans defended our vital interest in the Persian Gulf. They faced a dangerous enemy, harsh conditions, lengthy isolation from their families. And they went to victory for our country with lightening speed. When they came home, for reasons that we still don't fully understand, thousands of them became ill. They served their country with courage and skill and strength, and they must now know that they can rely upon us. And we must not, and will not, let http://www.defenselink.mil/speeches/1997/r19970107-clinton.htm 7/5/2000 Defense Issues: Volume 12, Number Report to the President on Gulf War Illnesses Page 5 of 13 them down. Three years ago, I asked the secretaries of defense, health and human services and veterans affairs to form the Persian Gulf Veterans Coordinating Board to strengthen our efforts to care for our veterans and find the causes of their illnesses. I signed landmark legislation that pays disability benefits to Gulf War veterans with undiagnosed illnesses. DoD and VA established toll-free lines and medical evaluation programs. I am especially grateful to the first lady, who took this matter to heart and first brought it to my attention quite a long while ago now. I thank her for reaching out to the veterans and for making sure that their voices would be heard. To date, we have provided Gulf War veterans with more than 80,000 free medical exams. We've approved more than 26,000 disability claims. HHS, DoD and the Veterans Department have sponsored more than 70 research projects to identify the possible causes of the illnesses. But early on, it became clear that answers were not emerging fast enough. Hillary and I shared the frustration and concerns of many veterans and their families. We realized the issues were so complex they demanded a more comprehensive effort. That is why, in May of 1995, I asked some of our nation's best doctors and scientists, as well as Gulf War veterans themselves, to form a presidential advisory committee that could provide an open and thorough and independent review of the government's response to veterans' health concerns and the causes of their ailments. Since that time, we have made some real progress. The Department of Defense with the CIA launched a review of more than 5 million pages of Gulf War documents, declassifying some 23,000 pages of materials and putting them on the Internet. Through this effort, we discovered important information concerning the possible exposure of our troops to chemical agents in the wake of our destruction of an arms depot in southern Iraq. The committee made clear, and the Defense Department agrees, that this new information demands a new approach, focusing on what happened not only during, but after, the war and what it could mean for our troops. Based on the committee's guidance, the Department of Defense has restructured and intensified its efforts, increasing tenfold its investigating teams, tracking down and talking to veterans who may have been exposed to chemical agents and devoting millions of dollars to research on the possible effects of low-level chemical exposure. I'm determined that this investigation will be comprehensive and credible. We haven't ended the suffering; we don't have all the answers; and I won't be satisfied until we have done everything humanly possible to find them. That's why I welcome this committee's report and its suggestions on how to make our commitment even stronger. I also take seriously the concern regarding DoD's investigation of possible chemical exposure. I'm determined to act swiftly on these findings not only to help the veterans who are sick, but to apply the lessons of this experience to the future. I've asked the secretaries of defense, health and human service, and http://www.defenselink.mil/speeches/1997/r19970107-clinton.html 7/5/2000 Defense Issues: Volume 12, Number 1 Report to the President on Gulf War Illnesses Page 6 of 13 veterans affairs to report to me in 60 days with concrete, specific action plans for implementing these recommendations. And I am directing Secretary [of Defense]-designate [William S.] Cohen, when confirmed by the Senate [confirmed, Jan. 22], to make this a top priority of the Defense Department. I'm also announcing two other immediate initiatives First, I've asked this committee to stay in business for nine more months to provide independent, expert oversight of DoD's efforts to investigate chemical exposure and also to monitor the governmentwide response to the broader recommendations. The committee's persistent public effort has helped to bring much new information to light, and I have instructed them to fulfill their oversight role with the same intensity, resolve and vigór they have brought to their work so far. Dr. Lashof has agreed to continue, and I trust the other committee members will as well. Second, I'm accepting Secretary Brown's proposal to reconsider the regulation that Gulf War veterans with undiagnosed illnesses must prove their disabilities emerged within two years of their return in order to be eligible for benefits. Experience has shown that many disabled veterans have their claims denied because they fall outside the two-year time frame. I've asked Secretary Brown to report back to me in 60 days with a view toward extending that limit. And we will do whatever we can and whatever it takes to research Gulf War illnesses as thoroughly as possible. Every credible possibility must be fully explored, including low-level chemical exposure and combat stress. I know that Congress shares our deep concern, and let me again thank Sen. Specter, Sen. Rockefeller and Congressman Evans for being here. Caring for our veterans is not a partisan issue, it is a national obligation, and I thank them for the approach that they have taken. As we continue to investigate Gulf War illnesses, let me again take this opportunity to urge the Congress to ratify the Chemical Weapons Convention, which would make it harder for rogue states to acquire chemical weapons in the future and protect the soldiers of the United States and our allies in the future. This report is not the end of the road, anymore than it is the beginning. We have a lot of hard work that's been done and we have made some progress, but the task is far from over. The committee's assessment gives me confidence that we are on the right track, but we have much yet to learn and much to do. As we do make progress, we will make our findings public. We will be open in how we view Gulf War illnesses and all their possible causes -- open to the veterans whose care is in our hands; open to the public looking to us for answers. I pledge to our veterans and to every American, we will not stop until we have done all we can to care for our Gulf War veterans to find out why they are sick and to help to make them healthy again. http://www.defenselink.mil/speeches/1997/r19970107-clinton.htm 7/5/2000 Defense Issues: Volume 12, Number 1 Report to the President on Gulf War Illnesses Page 7 of 13 Thank you very much. Q. Mr. President, this has been studied to death. Do you believe that there is a Gulf War illness? A. I believe that there are a lot of veterans who got sick as a result of their service in the gulf. And I believe it took experts to determine whether there is one or a deliberation of them in exactly what the cause and connection is. That has been apparent for some time. That's why the Congress agreed to support our efforts that for the first time paid disability payments for people with undiagnosed conditions. I think that this committee has done a good job. I think I want to compliment the work that has been done in the last few months by John White of the Defense Department in facing up to the things which were not done before. No one has ever suggested that anybody intentionally imposed -- exposed American soldiers to these dangers, and there is nothing -- there is no reason that anyone in this government should ever do anything but just try to get to the truth and get it out and do what is right for the veterans. And there are also I think we need to be a little humble about this. There are a lot of things that we still don't know. That's what Dr. Lashof said. And that's why these research projects are so very important. And the final thing I'd like to say is we don't know all the answers here. You heard Dr. Lashof say that sometimes when people were exposed to substances that can cause cancer it may not be manifested for 10 years, which is why I want to thank Secretary Brown for urging that we stress the two-year rule. We have to -- we have to be vigilant about this. And my successor will be working on it. We will be monitoring this for a long time to come. But we've got a process now the American people and the veterans and their families can have confidence in. We've got the appropriate commitment of personnel and money. And more important, we've got the appropriate commitment of the heart and mind. And I'm convinced now that we will do justice to this issue and to the people that have been affected by it. Thank you, Mr. President. Press Conference Q. Dr. Lashof, just a few minutes ago, Sen. Specter said that they are going to be holding hearings on Thursday on the Hill, and he was talking about the possibility of a cover-up by the Pentagon. Do you agree with that assessment? Do you think that that's ? A. We found no evidence of a cover-up in our work. Q. Could we use another word? I mean, was the information adequately conveyed to the public about what they had found? http://www.defenselink.mil/speeches/1997/r19970107-clinton.html 7/5/2000 Defense Issues: Volume 12, Number 1 Report to the President on Gulf War Illnesses Page 8 of 13 A. Let me put it this way: They were very slow, and the actual investigation for the possibility of exposure was, we say in the report, superficial and inadequate initially. I think now. Q. Was it intentional or ? A. We have no way of judging what their intentions were. We were critical of the lack of effort, and they now have made a commitment. But they can answer that, and I would turn that question to Paul Busick. Q. Dr. Lashof, in the context of the Defense Science Board investigation of '94, which was presented as a thorough, exhaustive study of exposures, how do you rate that study compared to what you've found out? A. Well, we obviously uncovered, and it was brought to light, the incident at Khamisiyah [Iraq] that apparently was not known at that time. Q. Adm. Busick, would you be able to answer the first question? A. Sure. I think that the Defense Department has acknowledged that it needs to do more and has moved very quickly recently to do more. I think that the secretary of defense has taken the allegations of a cover-up very seriously, and the deputy secretary of defense has instructed the secretary of the Army to launch an Army inspector general investigation into the incident at Khamisiyah. Q. Admiral, why was the department so slow, though? A. When we get the inspector general's investigation, then we will have more information about what to do, and we look forward to having that. Q. Why was the initial investigation so slow? You obviously had had the experience of Agent Orange in Vietnam. There was a precedent for this. Why wasn't there a better effort made initially? A. I think that the PAC report has stated that the Defense Department had two triggering events that they viewed as critical. One was whether the Iraqis presented or used offensive chemical weapons, and the second was whether there were acute symptoms. Q. And what did they find? A. Neither of those have been found to be the case, and that's in large part why there was no belief that there was a chemical event. Q. Dr. Lashof, did your inquiry find any evidence of widespread exposure of American troops to chemical weapons, one? And two, do you have any chemical evidence to suggest that low-level exposure causes any of the symptoms that Gulf War veterans are now reporting? A. The only evidence of exposure that we were able to find was the event at Khamisiyah. There are reports of other site-specific reading on M-254s and Fox vehicles that need to be further investigated. And that's why we've asked for further investigation of possible exposures. There are other reports of detections, but an actual source has only been http://www.defenselink.mil/speeches/1997/r19970107-clinton.htm 7/5/2000 Defense Issues: Volume 12, Number 1 Report to the President on Gulf War Illnesses Page 9 of 13 identified in Khamisiyah. To your second question of low-level exposure and is this the cause of the illness, we have no clinical evidence now of long-term health effects from high-level exposures from times when people are ill. The research on long-term effects from low-level is not really available at this point. In my view, it would be unlikely to see results from low level when we don't see long-term effects from high-level exposure. But we believe that research needs to be done around this, and there are, and we suggest in the committee report, that there are two populations that could be looked at. One is the Japanese in the subway who were exposed, and the other are the pesticide applicators who often are exposed for long times to very low levels. And we think these could be investigated and that question put to rest. Q. Just to follow up that, if I might, given the uncertainty about whether any more than one chemical alarm went off at Khamisiyah, do you regard the exposure at Khamisiyah as a case of potential exposure or actual exposure? A. I think we feel that we know that there were weapons that contained chemical agents at Khamisiyah that were exploded. Therefore, we have to assume that there was exposure to the troops from that release from those weapons that were destroyed at Khamisiyah. Q. Even if chemical alarms didn't go off? A. I was going to say, I thought there was a chemical alarm that went off there and one positive detection. We'll get back -- I can get this. They have to research that, and they can get back to you with further detail. Q. You've termed so far today the Pentagon's response to this problem as being inadequate, superficial, incredible, intransigent, various other adjectives. Yet your conclusion is that they will be able to do the follow- up with a tenfold investigative staff. Isn't there a dichotomy there? A. I do not believe there is a dichotomy. In fact, I'm glad you asked the question about that. We feel it's very essential that the follow-up be done and that it be done under very strong oversight with a public view of it. The committee's work, actually, on this issue I think has been misrepresented. I have held back from reporting on the mischaracterizations until our work was finally completed, but let me point out that I think it's unfortunate that our deliberations have been cast in the light that suggests that we have backed off from any suggestion of an independent investigation. At the committee's September meeting, the staff briefed us on its investigations on the exposure half of the chemical and biological weapons issue. In the transcript of that meeting, the staff reported -- and I will quote from that transcript because I'd like this to be on the record correctly because it has been misrepresented: "The Department of Defense has assets that cannot be replaced in pursuing those investigations. DoD has to play a critical role in investigating possible exposures. And credible review cannot be accomplished internally by the http://www.defenselink.mil/speeches/1997/r19970107-clinton.htm 7/5/2000 Defense Issues: Volume 12, Number 1-- Report to the President on Gulf War Illnesses Page 10 of 13 Department of Defense, however. To be credible amongst veterans and the American public in general, there is a need for outside, independent oversight review and involvement." Now, that was the quote from our September meeting. At the November meeting, the committee met to review and complete the recommendation process. For the recommendation in question, our discussion at the November meeting centered around adding language to provide greater context and depth to the recommendation adding language to the report, that is. And I'm aware that many people portrayed this discussion as a re-evaluation of staff's recommendation. As the record clearly shows, however, this is just not true. Our position has been clear from the outset, and our final recommendation reflects that position. The investigation must be done by DoD, but it must be done under very vigorous and extensive oversight. And I think that the president's action today to extend the committee fully meets the intent and the spirit of that recommendation, and we intend to be vigorous in our oversight of this. Q. Adm. Busick, the veterans groups have been on record as saying that in the case of the missing logs and missing records, that there is an issue, potentially criminal issue, of chain of custody, whether they are missing or whether they do exist but have been misplaced. What's the current situation with that? A. I think the Department of Defense has started the investigation to reconstruct what's occurred. I know that the Department of Defense has launched an inspector general investigation into the events surrounding Khamisiyah, and that will include the look at logs. Q. Doctor, this study seems to focus mostly on stress, and in the three that you all list early on about what you've found you can't find any casual link between the illnesses and these types of pesticides and chemicals and the like. What caused the stress? A. Going to war is a stressful situation and having alarms going off around you, the oil well fires, the general conditions under which people were living and working. All of these add stress, and different people are going to react to stress differently, and different degrees of stress have different effects on individuals. Q. Could you see this as any different than any other type of wartime scenario? A. Well, we see effects of stress in any war; that is correct. Whether it's more or less, we have no data on that, one way or the other. Q. You seemed careful in the previous session to say that you found no causal link between any individual factor and the veterans illnesses. A. That's correct. Q. Does that leave the door open to synergistic effects, particularly between stress and, for instance, various chemical agents or even the PB [pyridostigmine bromide] pills? http://www.defenselink.mil/speeches/1997/r19970107-clinton.htm 7/5/2000 Defense Issues: Volume 12, Number 1 Report to the President on Gulf War Illnesses Page 11 of 13 A. I think it does leave that door open. We do recommend further research specifically on the synergistic effects between pyridostigmine bromide and pesticides. You are correct that we say stress is a contributing factor and we don't know what other factors it could relate with. We really have a lot of epidemiologic research ongoing, and until that research is completed, we're not going to be able to answer some of the questions you're now -- you and the vets, appropriately, and we are asking. Q. Doctor, do you come away from this study thinking that the U.S military force structure should somehow be altered so that the Guard and Reserves aren't relied upon so heavily in wartime performance? A. That's not an issue that was in the realm of our committee to consider. Q. Doctor, much was made a few months ago of a claim by two former CIA analysts that documents that they had examined demonstrated beyond doubt Iraqi use of chemical weapons and a CIA cover-up. Are you satisfied you got those documents from the CIA, and did they show any evidence of Iraqi chemical use during the war? A. We reviewed those documents and do not see that they present any evidence that the Iraqis used [chemical] weapons during the war. Q. Did we use any? Lashof. No. Busick. Can I follow up on that? Again, the director of central intelligence found that the accusation, the allegations that there was a cover-up on CIA, were important, and they have also launched an inspector general investigation into that issue. Q. Dr. Lashof, can you address the issue of why Dr. Jonathan Tucker was dismissed, I guess over a year ago -- a member, a researcher on the committee? A. I'm aware of the circumstances concerning his departure, and I will not discuss personnel matters. I know that the staff acted appropriately in that. Q. Do you think that has damaged your credibility at all, dismissing one of your top researchers? He's now saying that there was disagreements among himself and some of the members I think on the research A. I think our report on that stands as a good record. We've obviously dealt very heavily into this area. We have an excellent investigator who has taken on that area and done an excellent job, and I think -- look at the report. Q. Just a very basic kind of technical question, but are you, at this point, aware -- do you feel that you are aware -- of every single chemical that people in that region may have been exposed to, as opposed to how these chemicals may have worked together? In other words, is there any factor, any chemical factor, that you feel you do not know existed there that might have been used? http://www.defenselink.mil/speeches/1997/r19970107-clinton.html 7/5/2000 Defense Issues: Volume 12, Number 1-- Report to the President on Gulf War Illnesses Page 12 of 13 A. Well, it's always hard to know something that you don't know. I believe we know everything that's been issued to them. We know everything that you could logically think about. If there's something that's illogical, unknown out there, I don't know how anyone knows what they don't know. But there's obviously no evidence that anyone has information that they're keeping from us. We certainly know everything that's been issued. We know what oil well fires burned. We know what diesel fuel was used. We went into this extensively. Q. Do you have fixed in your mind a population that shares these multiple symptoms? How many active duty, how many veterans? A. No, the only data -- we do in the report review briefly the data from the comprehensive clinical evaluation protocol of the Department of Defense, and then the VA has a registry, and we give a table that shows what percentage had symptoms of ill-defined conditions and PTSD [posttraumatic stress disorder] and so forth. Q. What do you have fixed in your mind as the population who are complaining or have some illness as a result of this? What is it? A. You mean, how many, numbers? The only numbers we have are the numbers who have gone in for examinations. And until we have the epidemiologic studies, we don't know what percentage that represents, whether it represents who has been ill or not. We've got to await those studies. Q. Dr. Lashof, do you think that nine more months of operations by your committee will produce a definitive conclusion as to what's behind these illnesses? A. I think we'll be able to elucidate a great deal more. I don't think a definitive solution will be known in nine months. It depends really on what the results of the major studies that are ongoing now show as to how far we can go in nine months. They may open up avenues that are new that will need further exploration. They may give us answers. I really couldn't speculate. A. I think the objective on the part of the administration here is to get to credibility in terms of process. One of the major factors that we wanted the PAC to stay on for was to address the issue of the process that the Department of Defense is using to get to the answers that we need, in terms of investigations into low-level chemicals and those kinds of issues. If we can get to a credible process that has been independently verified, then we'll be a long way down the road toward the answers that we need to get at. That's the objective. Published for internal information use by the American Forces Information Service, a field activity of the Office of the Assistant Secretary of Defense (Public Affairs), Washington, D.C Parenthetical entries are speaker/author notes; bracketed entries are editorial notes This material is in the public domain and may be reprinted without permission Defense Issues is available on the Internet via the World Wide Web at http://www.defenselink.mil/speeches/index.html. http://www.defenselink.mil/speeches/1997/r19970107-clinton.html 7/5/2000 LEVEL 1 - 33 OF 87 STORIES Copyright 1997 Bergen Record Corp. The Record <=1> View Related Topics January 21, 1997; TUESDAY SECTION: NEWS; 5 Star, ALSO IN, 4 Star, 3 Star, 2 Star; Pg. A08 LENGTH: 775 words HEADLINE: FOR 2ND TERM, FIRST LADY HINTS HER ACTIVISM WILL BE DISCREET SOURCE: Wire services BYLINE: LISA ANDERSON, Special from the Chicago Tribune DATELINE: WASHINGTON BODY: While her husband builds a bridge to the next millennium, first lady Hillary Rodham Clinton has been quietly planning her own role over the next four years. She has revealed few details of that role, but in recent weeks she has dropped some hints of the essential approach she plans to take: high-octane in content, but low-key in style. While she has mentioned her concern about the impact of new welfare regulations on women and children, and her interest in helping states and municipalities to handle them humanely, she has framed that involvement more in terms of a subdued advocate, rather than an aggressive activist. During her trip to Asia in November, the first lady said she was considering a"formal role"in her husband's second term, a phrase that set off shock waves among Republicans and other critics and a flurry of denials from the White House. But what she said, in context, signaled she may have concluded that discretion is the better part of successful policy implementation. Clinton said she was contemplating"a formal role that would make sense in terms of reporting to the president, kind of like what I did on the gulf war disease, go out, listen to people, maybe write him some memoranda." She said her office quietly had become a point of contact for people concerned about the so-called gulf war syndrome. Having emerged as one of the most controversial first ladies in history during her husband's first term, failing in her effort to spearhead his health-care reform program, Clinton adopted a low profile during the second campaign. And, she steadfastly adhered to it during this inauguration. Compared with her strong inaugural presence four years ago, the first lady's appearances and public utterances have been relatively few and discreet this time around. She gave only two interviews during the inaugural weekend, to C-SPAN and"CBS Sunday Morning." Filling in for her husband, who was preparing his inaugural address and conserving his voice, she stopped by at a party for Arkansas supporters, dropped in at a women's inaugural ball, and made a brief appearance at the MTV-Conde Nast party. Perhaps her most substantial speech of the weekend was the 10-minute address she made to a luncheon for newly elected congressional women hosted by Emily's List, the fund-raising organization for female Democratic candidates. Greeted by a cheering audience of some 2,500, she was introduced by Emily's List President Ellen Malcolm as"our role model." "Who better to celebrate the power of women than the woman who has used her power to help so many," Malcolm said of Clinton. Given a second term to define herself for Americans and history, Clinton clearly seems to have power on her mind, but is shifting the way in which she wields that power and even talks about it. "It is important that there be a balance of power between men and women"in political and private life, she told the luncheon group, repeating a somewhat conciliatory theme she introduced during her Asian trip. "Women do not seek power over men, "she said. "They seek power over themselves." And, in the C-SPAN interview she said,"I want to bring the discussion about women and power out of the dark recesses and put it into the bright light and let women begin to talk about what they want out of life." Clinton may have concluded that the hard-charging, upfront manner she used in the first term was a tactical error, according to Betty Boyd Caroli, author of two books on first ladies. "First ladies have a great deal of power. As Nancy Reagan said, I'm sleeping with the president and, if that doesn't give you power, I don't know what does. The difference is that Hillary Clinton admitted she had power"i her own right, said Caroli. There is no question that bothered many people, driving the first lady's popularity down to 57 percent, according to a recent poll by the Pew Research Center for the People and the Press. But others admired her courage and competence. Shivering along the inaugural parade route Monday, Sandy Butterfield, a health-care consultant, said,"I believe that the first lady should do whatever her education and background allow and, certainly, Hillary Clinton is well-qualified." Butterfield, 52, said she hoped Clinton would not downplay her role in the next term. "I know it's controversial, but I think she needs to take an active role, not just in terms of issues involving women and children, but in any issues in which she's qualified." GRAPHIC: ASSOCIATED PRESS PHOTO - The Clintons taking their turn on the dance floor at the New England Ball. For Hillary Rodham Clinton, it was a day blissfully free of the controversies that dogged her during her husband's first four years in office. LANGUAGE: English LOAD-DATE: January 21, 1997 Clinton Presidential Records Digital Records Marker This is not a presidential record. This is used as an administrative marker by the William J. Clinton Presidential Library Staff. This marker identifies the place of a tabbed divider. Given our digitization capabilities, we are sometimes unable to adequately scan such dividers. The title from the original document is indicated below. 01/07/97: TALKING IT OVER COLUMN Divider Title: Creators Syndicate 310-337-7003 01/7/97 07:30 PM 2/3 TALKING IT OVER BY HILLARY RODHAM CLINTON FOR IMMEDIATE RELEASE For most Americans, the Persian Gulf War, fought nearly six years ago, is a distant memory. But for thousands of brave men and women who served our country in Operation Desert Storm, the experience lingers in a variety of undiagnosed illnesses - from rashes to respiratory problems to headaches to gastrointestinal disorders -- that befell them when they came home. Over the last four years, Bill and I have received many heart-wrenching and haunting letters from Gulf War veterans and their families. Many veterans told us they felt that their country had forgotten them, that America was not doing enough to help them become healthy again. So in the fall of 1994, the President asked me to explore issues surrounding the health needs of our Gulf War veterans and to look into ways to improve the federal government's efforts to address their concerns. I spoke with many veterans on the phone, in my office and at military and veterans' hospitals. I listened as they tried to describe what it was like to live day after day, year after year, not knowing why they had become sick. I heard stories of hard-working men and women who could no longer keep steady jobs and support their families because of their illnesses. One veteran officer who had been diagnosed as 100 percent disabled told me about the healthy and active life he had led before his tour in the Persian Gulf and about his frustration in seeking effective treatments for his symptoms. I also met with officials from the Departments of Defense, Veterans Affairs and Health and Human Services to determine if we were doing the very best we could to respond to our veterans and to facilitate research into their illnesses. Representatives of the American Legion and the Veterans of Foreign Wars shared their own observations and told me of their efforts to bring attention to these illnesses. Almost two years ago, I reported to the President on these findings. Bill then asked some of our nation's best doctors and scientists, as well as Gulf War veterans themselves, to form a Presidential Advisory Committee that could provide an open, thorough and independent review of the government's response to veterans' health concerns. I had the privilege of Creators Syndicate 310-337-7003 01/7/97 07:30 PM 3/3 TALKING IT OVER 1/7/97 Page 2 testifying at the first meeting of this committee in August 1995. And earlier this week, I watched as the committee presented its final report to the President. The committee found that, overall, the government had acted responsibly and comprehensively. In 1994, the President signed legislation that pays disability benefits to eligible Gulf War veterans with undiagnosed illnesses. The Departments of Defense and Veterans Affairs established toll-free lines and medical evaluation programs. Gulf War veterans have received more than 80,000 free medical exams. The government has approved more than 26,000 disability claims and sponsored more than 70 research projects to identify the possible causes of the illnesses. But the committee also noted areas for improvement, especially in the realm of building trust and strengthening the lines of communication between veterans and the government agencies that serve them. It expressed concern that the Defense Department had not investigated possible chemical weapons exposure thoroughly enough in the past. As a result, the Defense Department has intensified its investigation into this issue, tracking down veterans who may have been exposed to chemical agents and devoting millions of dollars to researching the possible effects of low-level chemical exposure. The Defense Department and the CIA have declassified 23,000 pages of documents and placed them on the Internet. And a review of more than 5 million pages of Gulf War documents has already yielded some evidence that our troops may have been exposed to chemical agents. In the years since the Gulf War, there has been no shortage of opinions, theories and explanations about the health problems of veterans who served our country. But at least we can agree that we need to do whatever it takes to bring good health and peace of mind to the men and women who fought on our behalf thousands of miles from home. As the President said this week at the White House, "They served their country with courage and skill and strength, and they must now know that they can rely upon us. And we must not, and will not, let them down." COPYRIGHT 1997 CREATORS SYNDICATE, INC. ALL RIGHTS RESERVED January 7, 1997 Clinton Presidential Records Digital Records Marker This is not a presidential record. This is used as an administrative marker by the William J. Clinton Presidential Library Staff. This marker identifies the place of a tabbed divider. Given our digitization capabilities, we are sometimes unable to adequately scan such dividers. The title from the original document is indicated below. SUPPLEMENTAL TEXT Divider Title: Page 1 of 2 THE WHITE HOUSE Office of the Press Secretary For Immediate Release January 30, 1997 EXECUTIVE ORDER 13034 EXTENSION OF PRESIDENTIAL ADVISORY COMMITTEE ON GULF WAR VETERANS' ILLNESSES By the authority vested in me as President by the Constitution and the laws of the United States of America, it is hereby ordered as follows: Section 1. Extension. The Presidential Advisory Committee on Gulf War Veterans' Illnesses (the "Committee"), established pursuant to Executive Order 12961 of May 26, 1995, is hereby extended for the purposes set forth herein. All provisions of that order relating to membership and administration shall remain in effect. All Committee appointments, as well as the President's designation of a Chairperson, shall remain in effect. The limitations set forth in section 2(c)-(e) and section 4 (a) of Executive Order 12961 shall also remain in effect. The Committee shall remain subject to the Federal Advisory Committee Act, as amended, 5 U.S.C. App. 2. Sec. 2. Functions. (a) The Committee shall report to the President through the Secretary of Defense, the Secretary of Veterans Affairs, and the Secretary of Health and Human Services. (b) The Committee shall have two principal roles: (1) Oversight of the ongoing investigation being conducted by the Department of Defense with the assistance, as appropriate, of other executive departments and agencies into possible chemical or biological warfare agent exposures during the Gulf War; and (2) Evaluation of the Federal Government's plan for and progress towards the implementation of the Committee's recommendations contained in its Final Report submitted on December 31, 1996. (c) The Committee shall provide advice and recommendations related to its oversight and evaluation responsibilities. (d) The Committee may also provide additional advice and recommendations prompted by any new developments related to its original functions as set forth in section 2 (b) of Executive Order 12961. (e) The Committee shall submit by letter a status report by April 30, 1997, and a final supplemental report by October 31, 1997, unless otherwise directed by the President. Sec. 3. General Provisions. (a) The Committee shall http://www.pub.whitehouse.gov/uri-res/I2R?urn:pdi://oma.eop.gov.us/1997/2/4/3.text.2 7/5/2000 Page 2 of 2 terminate 30 days after submitting its final supplemental report. (b) This order is intended only to improve the internal management of the executive branch and it is not intended to create any right, benefit or trust responsibility, substantive or procedural, enforceable at law or equity by a party against the United States, its agencies, its officers, or any person. WILLIAM J. CLINTON THE WHITE HOUSE, January 30, 1997. # # # http://www.pub.whitehouse.gov/uri-res/I2R?urn:pdi://oma.eop.gov.us/1997/2/4/3.text.2 7/5/2000 Page 1 of 3 THIS SEARCH THIS DOCUMENT GO TO Next Hit Forward New Bills Search Prev Hit Back HomePage Hit List Best Sections Help Doc Contents References to this bill in the Link to the Bill Summary & Full Display - 6,071 Congressional Record Status file. bytes.[Help] Persian Gulf War Veterans Health and Services Enhancement Act (Introduced in the House) HR 4542 IH 103d CONGRESS 2d Session H. R. 4542 To provide an improved system of health-related information for Persian Gulf War veterans and to extend the availability of certain health care for Persian Gulf War Veterans. IN THE HOUSE OF REPRESENTATIVES June 8, 1994 Mr. KENNEDY (for himself, Mr. EVANS, Mr. GUTIERREZ, Mr. HOCHBRUECKNER, Mr. MONTGOMERY, and Mr. SANDERS) introduced the following bill; which was referred to the Committee on Veterans' Affairs A BILL To provide an improved system of health-related information for Persian Gulf War veterans and to extend the availability of certain health care for Persian Gulf War Veterans. Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled, SECTION 1. SHORT TITLE. This Act may be cited as the `Persian Gulf War Veterans Health and Services Enhancement Act'. SEC. 2. TOLL-FREE HOTLINE FOR PERSIAN GULF WAR VETERAN HEALTH INFORMATION. (a) IN GENERAL- The Secretary of Veterans Affairs shall maintain an information system involving the use of a toll-free telephone number to provide veterans of the Persian Gulf War and their family members (and other members of the public at the Secretary's discretion) with information regarding the following: http://thomas.loc.gov/cgi-bin/query/z?c103:H.R.4542 7/5/2000 Page 2 of 3 (1) The Persian Gulf War Veterans Health Registry established by the Persian Gulf War Veterans' Health Status Act (38 U.S.C. 527 note). (2) Access to health services and health-related benefits provided by or under the auspices of the Department of Veterans Affairs, including-- (A) marriage and family counseling available under section 121 of the Veterans' Medical Programs Amendments of 1992 (38 U.S.C. 1712A note); (B) health care available under section 1710(e)(1)(C) of title 38, United States Code; and (C) health examinations, consultation, and counseling available under section 703 of the Persian Gulf War Veterans' Health Status Act (38 U.S.C. 527 note). (3) Compensation and benefits related to disabilities resulting from service in the Persian Gulf War, including disabilities resulting from illness that resulted from such service. (4) Significant developments in research relating to the health consequences of service in the Persian Gulf War. (5) Any other information that the Secretary determines to be appropriate. (b) DATE OF ESTABLISHMENT OF INFORMATION SYSTEM- The Secretary of Veterans Affairs shall establish the information system required by subsection (a) not later than 90 days after the date of the enactment of this Act. SEC. 3. OUTREACH TO VETERANS OF PERSIAN GULF WAR. Section 702(f) of the Persian Gulf War Veterans' Health Status Act (38 U.S.C. 527 note) is amended to read as follows: '(f) ONGOING OUTREACH TO INDIVIDUALS LISTED IN REGISTRY- '(1) IN GENERAL- The Secretary of Veterans Affairs shall notify each individual listed in the Registry, or, in the case of such an individual who is deceased, the surviving spouse, children, or parents of such individual, at least quarterly, by newsletter or by other means that the Secretary determines to be appropriate, of-- '(A) the status and findings of federally sponsored research relating to the illnesses of individuals who served as members of the Armed Forces in the Persian Gulf theater of operations during the Persian Gulf War or to the illnesses of the family members of such individuals; `(B) compensation and benefits, including health care and other health-related benefits, that may be provided by the Department of Veterans Affairs or the Department of Defense to an individual who served as a member of the Armed Forces in the Persian Gulf theater of operations during the Persian Gulf War or, in the case of such an individual who is deceased, to the surviving spouse, children, or parents of such an individual; and '(C) any other information that the Secretary determines to be appropriate. http://thomas.loc.gov/cgi-bin/query/z?c103:H.R.4542: 7/5/2000 Page 3 of 3 '(2) CONSULTATION WITH VETERANS SERVICE ORGANIZATIONS- In preparing the newsletter or other means used to conduct the notification required by paragraph (1), the Secretary of Veterans Affairs shall consult with veterans' service organizations. '(3) DATE THAT QUARTERLY NOTIFICATIONS BEGIN- The Secretary of Veterans Affairs shall make the first of the periodic notifications required by paragraph (1) not later than 90 days after the date of the enactment of the Persian Gulf War Veterans Health and Services Enhancement Act.'. SEC. 4. EXTENSION OF AUTHORITY TO PROVIDE PRIORITY HEALTH CARE TO VETERANS OF THE PERSIAN GULF WAR. (a) HOSPITAL AND NURSING HOME CARE- Section 1710(e)(3) of title 38, United States Code, is amended by striking `December 31, 1994' and inserting `December 31, 1998'. (b) OUTPATIENT CARE- Section 1712(a)(1)(D) of title 38, United States Code, is amended by striking `December 31, 1994' and inserting `December 31, 1998'. SEC. 5. EXTENSION OF MARRIAGE AND FAMILY COUNSELING AVAILABILITY FOR PERSIAN GULF WAR VETERANS. (a) IN GENERAL- Section 121(a) of the Veterans' Medical Programs Amendments of 1992 (38 U.S.C. 1712A note) is amended by striking `September 30, 1994' and inserting `December 31, 1998'. (b) AUTHORIZATION OF APPROPRIATIONS- Section 121(g) of the Veterans' Medical Programs Amendments of 1992 (38 U.S.C. 1712A note) is amended by striking `and 1994' and inserting `through 1999'. THIS SEARCH THIS DOCUMENT GO TO Next Hit Forward New Bills Search Prev Hit Back HomePage Hit List Best Sections Help Doc Contents http://thomas.loc.gov/cgi-bin/query/z?c103:H.R.4542 7/5/2000 Page 1 of 7 THIS SEARCH THIS DOCUMENT GO TO Next Hit Forward New Bills Search Prev Hit Back HomePage Hit List Best Sections Help Doc Contents H.R.5193 Veterans Health Care Act of 1992 (Enrolled Bill (Sent to President)) TITLE VII-PERSIAN GULF WAR VETERANS' HEALTH STATUS SEC. 701. SHORT TITLE. This title may be cited as the `Persian Gulf War Veterans' Health Status Act'. SEC. 702. PERSIAN GULF WAR VETERANS HEALTH REGISTRY. (a) ESTABLISHMENT OF REGISTRY- The Secretary of Veterans Affairs shall establish and maintain a special record to be known as the 'Persian Gulf War Veterans Health Registry' (in this section referred to as the `Registry'). (b) CONTENTS OF REGISTRY- Except as provided in subsection (c), the Registry shall include the following information: (1) A list containing the name of each individual who served as a member of the Armed Forces in the Persian Gulf theater of operations during the Persian Gulf War and who-- (A) applies for care or services from the Department of Veterans Affairs under chapter 17 of title 38, United States Code; (B) files a claim for compensation under chapter 11 of such title on the basis of any disability which may be associated with such service; (C) dies and is survived by a spouse, child, or parent who files a claim for dependency and indemnity compensation under chapter 13 of such title on the basis of such service; (D) requests from the Department a health examination under section 703; or (E) receives from the Department of Defense a health examination similar to the health examination referred to in subparagraph (D) and requests inclusion in the Registry. (2) Relevant medical data relating to the health status of, and other information that the Secretary considers relevant and appropriate with respect to, each individual described in paragraph (1) who-- http://thomas.loc.gov/cgi-bin/query/D?c102:1:./temp/-c102wxaSj2:e104327: 7/5/2000 Page 2 of 7 (A) grants to the Secretary permission to include such information in the Registry; or (B) at the time the individual is listed in the Registry, is deceased. (c) INDIVIDUALS SUBMITTING CLAIMS OR MAKING REQUESTS BEFORE DATE OF ENACTMENT- If in the case of an individual described in subsection (b)(1) the application, claim, or request referred to in such subsection was submitted, filed, or made, before the date of the enactment of this Act, the Secretary shall, to the extent feasible, include in the Registry such individual's name and the data and information, if any, described in subsection (b)(2) relating to the individual. (d) DEPARTMENT OF DEFENSE INFORMATION- The Secretary of Defense shall furnish to the Secretary of Veterans Affairs such information maintained by the Department of Defense as the Secretary of Veterans Affairs considers necessary to establish and maintain the Registry. (e) RELATION TO DEPARTMENT OF DEFENSE REGISTRY- The Secretary of Veterans Affairs, in consultation with the Secretary of Defense, shall ensure that information is collected and maintained in the Registry in a manner that permits effective and efficient cross-reference between the Registry and the registry established under section 734 of the National Defense Authorization Act for Fiscal Years 1992 and 1993 (Public Law 102-190; 105 Stat. 1411; 10 U.S.C. 1074 note), as amended by section 704. (f) ONGOING OUTREACH TO INDIVIDUALS LISTED IN REGISTRY- The Secretary of Veterans Affairs shall, from time to time, notify individuals listed in the Registry of significant developments in research on the health consequences of military service in the Persian Gulf theater of operations during the Persian Gulf War. SEC. 703. HEALTH EXAMINATIONS AND COUNSELING FOR VETERANS ELIGIBLE FOR INCLUSION IN CERTAIN HEALTH-RELATED REGISTRIES. (a) IN GENERAL- (1) The Secretary of Veterans Affairs-- (A) shall, upon the request of a veteran described in subsection (b)(1), provide the veteran with a health examination and consultation and counseling with respect to the results of the examination; and (B) may, upon the request of a veteran described in subsection (b)(2), provide the veteran with such an examination and such consultation and counseling. (2) The Secretary shall carry out appropriate outreach activities with respect to the provision of any health examinations and consultation and counseling services under paragraph (1). (b) COVERED VETERANS- (1) In accordance with subsection (a)(1)(A), the Secretary shall provide an examination, consultation, and counseling under that subsection to any veteran who is eligible for listing or inclusion in the Persian Gulf War Veterans Health Registry established by section 702. (2) In accordance with subsection (a)(1)(B), the Secretary may provide an examination, consultation, and counseling under that subsection to any veteran who is eligible for listing or inclusion in any other similar health-related registry administered by the Secretary. SEC. 704. EXPANSION OF COVERAGE OF PERSIAN GULF REGISTRY. http://thomas.loc.gov/cgi-bin/query/D?c102:1:/temp/-c102wxaSj2:e104327. 7/5/2000 Page 3 of 7 (a) IN GENERAL- Subsections (a) and (b) of section 734 of the National Defense Authorization Act for Fiscal Years 1992 and 1993 (Public Law 102-190; 105 Stat. 1411; 10 U.S.C. 1074 note) are amended to read as follows: '(a) ESTABLISHMENT OF REGISTRY- The Secretary of Defense shall establish and maintain a special record (in this section referred to as the 'Registry') relating to the following members of the Armed Forces: '(1) Members who, as determined by the Secretary, were exposed to the fumes of burning oil in the Operation Desert Storm theater of operations during the Persian Gulf conflict. '(2) Any other members who served in the Operation Desert Storm theater of operations during the Persian Gulf conflict. `(b) CONTENTS OF REGISTRY- (1) The Registry shall include-- '(A) with respect to each class of members referred to in each of paragraphs (1) and (2) of subsection (a)-- `(i) a list containing each such member's name and other relevant identifying information with respect to the member; and `(ii) to the extent that data are available and inclusion of the data is feasible, a description of the circumstances of the member's service during the Persian Gulf conflict, including the locations in the Operation Desert Storm theater of operations in which such service occurred and the atmospheric and other environmental circumstances in such locations at the time of such service; and '(B) with respect to the members referred to in subsection (a)(1), a description of the circumstances of each exposure of each such member to the fumes of burning oil as described in such subsection (a)(1), including the length of time of the exposure. '(2) The Secretary shall establish the Registry with the advice of an independent scientific organization.'. (b) CONFORMING AMENDMENTS- (1) Subsection (c)(1) of such section is amended by striking out `subsection (a)' and inserting in lieu thereof subsection (a)(1)'. (2) Subsection (d) of such section is amended by inserting `pursuant to subsection (a)(1)' after 'Registry'. SEC. 705. STUDY BY OFFICE OF TECHNOLOGY ASSESSMENT OF PERSIAN GULF REGISTRY AND PERSIAN GULF WAR VETERANS HEALTH REGISTRY. (a) STUDY- The Director of the Office of Technology Assessment shall, in a manner consistent with the Technology Assessment Act of 1972 (2 U.S.C. 472(d)), assess-- (1) the potential utility of each of the Persian Gulf Registry and the Persian Gulf War Veterans Health Registry for scientific study and assessment of the intermediate and long-term health consequences of military service in the Persian Gulf theater of operations during the Persian Gulf War; http://thomas.loc.gov/cgi-bin/query/D?c102:1:./temp/-c102wxaSj2:e104327: 7/5/2000 Page 4 of 7 (2) the extent to which each registry meets the requirements of the provisions of law under which the registry is established; (3) the extent to which data contained in each registry-- (A) are maintained in a manner that ensures permanent preservation and facilitates the effective, efficient retrieval of information that is potentially relevant to the scientific study of the intermediate and long-term health consequences of military service in the Persian Gulf theater of operations during the Persian Gulf War; and (B) would be useful for scientific study regarding such health consequences; (4) the adequacy of any plans to update each of the registries; (5) the extent to which the Department of Defense or the Department of Veterans Affairs, as the case may be, is assembling and maintaining information on the Persian Gulf theater of operations (including information on troop locations and atmospheric and weather conditions) in a manner that facilitates the usefulness of, maintenance of, and retrieval of information from, the applicable registry; and (6) the adequacy and compatibility of protocols for the health examinations and counseling provided under section 703 and health examinations provided by the Department of Defense to members of the Armed Forces for the purpose of assessing the health status of members of the Armed Forces who served in the Persian Gulf theater of operations during the Persian Gulf War. (b) ACCESS TO INFORMATION- The Secretary of Veterans Affairs and the Secretary of Defense shall provide the Director with access to such records and information under the jurisdiction of each such secretary as the Director determines necessary to permit the Director to carry out the study required under this section. (c) REPORTS- The Director shall-- (1) not later than 270 days after the date of the enactment of this Act, submit to Congress a report on the results of the assessment carried out under this section of the Persian Gulf Registry and health-examination protocols; and (2) not later than 15 months after such date, submit to Congress a report on the results of the assessment carried out under this section of the Persian Gulf War Veterans Health Registry. (d) DEFINITIONS- For the purposes of this section: (1) The term `Persian Gulf Registry' means the registry established under section 734 of the National Defense Authorization Act for Fiscal Years 1992 and 1993 (Public Law 102-190; 105 Stat. 1411; 10 U.S.C. 1074 note), as amended by section 704. (2) The term `Persian Gulf War Veterans Health Registry' means the Persian Gulf War Veterans Health Registry established under section 702. SEC. 706. AGREEMENT WITH NATIONAL ACADEMY OF SCIENCES FOR REVIEW OF HEALTH CONSEQUENCES OF SERVICE DURING THE PERSIAN GULF WAR. http://thomas.loc.gov/cgi-bin/query/D?c102:1:./temp/~c102wxaSj2:e104327: 7/5/2000 Page 5 of 7 (a) AGREEMENT- (1) The Secretary of Veterans Affairs and Secretary of Defense jointly shall seek to enter into an agreement with the National Academy of Sciences for the Medical Follow-Up Agency (MFUA) of the Institute of Medicine of the Academy to review existing scientific, medical, and other information on the health consequences of military service in the Persian Gulf theater of operations during the Persian Gulf War. (2) The agreement shall require MFUA to provide members of veterans organizations and members of the scientific community (including the Director of the Office of Technology Assessment) with the opportunity to comment on the method or methods MFUA proposes to use in conducting the review. (3) The agreement shall permit MFUA, in conducting the review, to examine and evaluate medical records of individuals who are included in the registries referred to in section 705(d) for purposes that MFUA considers appropriate, including the purpose of identifying illnesses of those individuals. (4) The Secretary of Veterans Affairs and the Secretary of Defense shall seek to enter into the agreement under this section not later than 180 days after the date of the enactment of this Act. (b) REPORT- (1) The agreement under this section shall require the National Academy of Sciences to submit to the committees and secretaries referred to in paragraph (2) a report on the results of the review carried out under the agreement. Such report shall contain the following: (A) An assessment of the effectiveness of actions taken by the Secretary of Veterans Affairs and the Secretary of Defense to collect and maintain information that is potentially useful for assessing the health consequences of the military service referred to in subsection (a). (B) Recommendations on means of improving the collection and maintenance of such information. (C) Recommendations on whether there is sound scientific basis for an epidemiological study or studies on the health consequences of such service, and if the recommendation is that there is sound scientific basis for such a study or studies, the nature of the study or studies. (2) The committees and secretaries referred to in paragraph (1) are the following: (A) The Committees on Veterans' Affairs of the Senate and House of Representatives. (B) The Committees on Armed Services of the Senate and House of Representatives. (C) The Secretary of Veterans Affairs. (D) The Secretary of Defense. (c) FUNDING- (1) The Secretary of Veterans Affairs and the Secretary of Defense shall make available up to a total of $500,000 in fiscal year 1993, from funds available to the Department of Veterans Affairs and the Department of Defense in that fiscal year, to carry out the review. Any amounts provided by the two departments shall be provided in equal amounts. (2) If the Secretary of Veterans Affairs and the Secretary of Defense enter into an agreement under subsection (a) with the National Academy of Sciences-- http://thomas.loc.gov/cgi-bin/query/D?c102:1:./temp/-c102wxaSj2e104327. 7/5/2000 Page 6 of 7 (A) the Secretary of Veterans Affairs shall make available $250,000 in each of fiscal years 1994 through 2003, from amounts available to the Department of Veterans Affairs in each such fiscal year, to the National Academy of Sciences for the general purposes of conducting epidemiological research with respect to military and veterans populations; and (B) the Secretary of Defense shall make available $250,000 in each of fiscal years 1994 through 2003, from amounts available to the Department of Defense in each such fiscal year, to the National Academy of Sciences for the purposes of carrying out the research referred to in subparagraph (A). SEC. 707. COORDINATION OF GOVERNMENT ACTIVITIES ON HEALTH-RELATED RESEARCH ON THE PERSIAN GULF WAR. (a) DESIGNATION OF COORDINATING ORGANIZATION- The President shall designate, and may redesignate from time to time, the head of an appropriate department or agency of the Federal Government to coordinate all research activities undertaken or funded by the Executive Branch of the Federal Government on the health consequences of military service in the Persian Gulf theater of operations during the Persian Gulf War. (b) REPORT- Not later than March 1 of each year, the head of the department or agency designated under subsection (a) shall submit to the Committees on Veterans' Affairs of the Senate and House of Representatives a report on the status and results of all such research activities undertaken or by the Executive Branch of the Federal Government during the previous year. SEC. 708. DEFINITION. For the purposes of this title, the term `Persian Gulf War' has the meaning given such term in section 101(33) of title 38, United States Code. TITLE VIII-COURT OF VETERANS APPEALS SEC. 801. DISCIPLINARY PROCEDURES FOR JUDGES OF COURT OF VETERANS APPEALS. Section 7253(g) is amended-- (1) by inserting '(1)' after '(g)'; and (2) by adding at the end the following: '(2) The provisions of paragraphs (7) through (15) of section 372(c) of title 28, regarding referral or certification to, and petition for review in, the Judicial Conference of the United States and action thereon, shall apply to the exercise by the Court of the powers of a judicial council under paragraph (1) of this subsection. The grounds for removal from office specified in subsection (f)(1) shall provide a basis for a determination pursuant to paragraph (7) or (8) of section 372(c) of title 28, and certification and transmittal by the Conference shall be made to the President for consideration under subsection (f). '(3)(A) In conducting hearings pursuant to paragraph (1), the Court may exercise the authority provided under section 1821 of title 28 to pay the fees and allowances described in that section. http://thomas.loc.gov/cgi-bin/query/D?c102:1:./temp/~c102wxaSj2:e104327: 7/5/2000 Page 7 of 7 `(B) The Court shall have the power provided under section 372(c)(16) of title 28 to award reimbursement for the reasonable expenses described in that section. Reimbursements under this subparagraph shall be made from funds appropriated to the Court.'. Speaker of the House of Representatives. Vice President of the United States and President of the Senate. THIS SEARCH THIS DOCUMENT GO TO Next Hit Forward New Bills Search Prev Hit Back HomePage Hit List Best Sections Help Doc Contents http://thomas.loc.gov/cgi-bin/query/D?c102:1:/temp/-c102wxaSj2:e104327 7/5/2000 Page 1 of 7 THIS SEARCH THIS DOCUMENT GO TO Next Hit Forward New Bills Search Prev Hit Back HomePage Hit List Best Sections Help Doc Contents H.R.4386 Veterans' Persian Gulf War Benefits Act (Reported in the House) AUGUST 4, 1994 Reported with an amendment, committed to the Committee of the Whole House on the State of the Union, and ordered to be printed [Strike out all after the enacting clause and insert the part printed in italic] [For text of introduced bill, see copy of bill as introduced on May 11, 1994] A BILL To amend title 38, United States Code, authorizing the Secretary of Veterans Affairs to provide compensation to veterans suffering from disabilities resulting from illnesses attributed to service in the Persian Gulf theater of operations during the Persian Gulf War, to provide for increased research into illnesses reported by Persian Gulf War veterans, and for other purposes. Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled, SECTION 1. SHORT TITLE. This Act may be cited as the 'Veterans' Persian Gulf War Benefits Act'. SEC. 2. CONGRESSIONAL FINDINGS. The Congress makes the following findings: (1) During the Persian Gulf War, members of the Armed Forces were exposed to numerous potentially toxic substances, including fumes and smoke from military operations, oil well fires, diesel exhaust, paints, pesticides, depleted uranium, infectious agents, chemoprophylactic agents, and indigenous diseases, and were also given multiple immunizations. It is not known whether these servicemembers were exposed to chemical or biological warfare agents. However, threats of enemy use of chemical and biological warfare heightened the psychological stress associated with the military operation. (2) Significant numbers of veterans of the Persian Gulf War are suffering from illnesses, http://thomas.loc.gov/cgi-bin/query/D?c103:6:./temp/~c1032ngoxoe4264 7/5/2000 Page 2 of 7 or are exhibiting symptoms of illness, that cannot now be diagnosed or clearly defined. As a result, many of these conditions or illnesses are not considered to be service connected under current law for purposes of benefits administered by the Department of Veterans Affairs. (3) The Technology Assessment Workshop on the Persian Gulf Experience and Health conducted by the National Institutes of Health concluded that the complex biological, chemical, physical, and psychological environment of the Southwest Asia theater of operations produced complex adverse health effects in Persian Gulf War veterans and that it appears that no single disease entity or syndrome exists. Rather, it appears that the illnesses suffered by those veterans result from multiple illnesses with overlapping symptoms and causes that have yet to be defined. (4) That workshop concluded that the data concerning the range and intensity of exposure to toxic substances by military personnel in the Southwest Asia theater of operations are very limited and that such data were collected only after a considerable delay. (5) In response to concerns regarding the health-care needs of Persian Gulf War veterans, particularly those who suffer from illnesses or conditions for which no diagnosis has been made, the Congress, in Public Law 102-585, directed the establishment of a Persian Gulf War Veterans Health Registry, authorized health examinations for veterans of the Persian Gulf War, and provided for the National Academy of Sciences to conduct a comprehensive review and assessment of information regarding the health consequences of military service in the Persian Gulf theater of operations and to develop recommendations on avenues for research regarding such health consequences. In Public Law 103-210, the Congress authorized the Department of Veterans Affairs to provide health care services on a priority basis to Persian Gulf War veterans. The Congress also provided in Public Law 103-160 (the National Defense Authorization Act for Fiscal Year 1994) for the establishment of a specialized environmental medical facility for the conduct of research into the possible health effects of exposure to low levels of hazardous chemicals, especially among Persian Gulf veterans, and for research into the possible health effects of battlefield exposure in such veterans to depleted uranium. (6) Further research and studies must be undertaken to determine the underlying causes of the illnesses suffered by Persian Gulf War veterans and, pending the outcome of such research, veterans who are seriously ill as the result of such illnesses should be given the benefit of the doubt and be provided compensation benefits to offset the impairment in earnings capacities they may be experiencing. SEC. 3. PURPOSES. The purposes of this Act are-- (1) to provide compensation to Persian Gulf War veterans who suffer disabilities resulting from illnesses that cannot now be diagnosed or defined, and for which other causes cannot be identified, (2) to require the Secretary of Veterans Affairs to develop at the earliest possible date case assessment strategies and definitions or diagnoses of such illnesses, (3) to promote greater outreach to Persian Gulf War veterans and their families to inform them of ongoing research activities, as well as the services and benefits to which they are currently entitled, and http://thomas.loc.gov/cgi-bin/query/D?c103:6:./temp/~c1032ngoxo:e4264: 7/5/2000 Page 3 of 7 (4) to ensure that research activities and accompanying surveys of Persian Gulf War veterans are appropriately funded and undertaken by the Department of Veterans Affairs. SEC. 4. DEVELOPMENT OF CASE ASSESSMENT PROTOCOL AND CASE DEFINITIONS. (a) IN GENERAL- The Secretary of Veterans Affairs shall-- (1) develop and implement at the earliest possible date a uniform case assessment protocol that will ensure thorough assessment, diagnosis, and treatment of all Persian Gulf War veterans suffering from illness attributed to service in the Southwest Asia theater of operations during the Persian Gulf War; and (2) develop at the earliest possible date case definitions or diagnoses for illnesses associated with such service. (b) CONSULTATION- Development of a uniform case assessment protocol under subsection (a)(1) and development of case definitions or diagnoses under subsection (a)(2) shall be carried out by the Secretary of Veterans Affairs in consultation with the Secretary of Defense and the Secretary of Health and Human Services. (c) REPORTS- The Secretary shall submit to the Committees on Veterans' Affairs of the Senate and House of Representatives an annual report on the status of the activities required by this section. The first such report shall be submitted not later than six months after the date of the enactment of this Act. SEC. 5. PROVISION OF INFORMATION TO VETERANS OF THE PERSIAN GULF WAR. (a) OUTREACH PROGRAM- The Secretary of Veterans Affairs shall develop and implement a comprehensive outreach program and information system to provide Persian Gulf War veterans and their families with information regarding the following: (1) The Persian Gulf War Veterans Health Registry established by the Persian Gulf War Veterans' Health Status Act (38 U.S.C. 527 note). (2) Access to health services and health-related benefits provided by or under the auspices of the Department of Veterans Affairs, including-- (A) marriage and family counseling available under section 121 of the Veterans' Medical Programs Amendments of 1992 (38 U.S.C. 1712A note); (B) health care available under section 1710(e)(1)(C) of title 38, United States Code; and (C) health examinations, consultation, and counseling available under section 703 of the Persian Gulf War Veterans' Health Status Act (38 U.S.C. 527 note). (3) Compensation and benefits related to disabilities resulting from service in the Persian Gulf War, including disabilities resulting from illness that resulted from such service. http://thomas.loc.gov/cgi-bin/query/D?c103:6./temp/~c1032ngoxo:e4264 7/5/2000 Page 4 of 7 (4) Significant developments in research relating to the health consequences of service in the Persian Gulf War. (5) Any other information that the Secretary determines to be appropriate. (b) TOLL-FREE TELEPHONE NUMBER- The information system required by subsection (a) shall include the establishment and staffing of a toll-free telephone number for the use of such veterans and their families. (c) FURTHER INFORMATION- Section 702(f) of the Persian Gulf War Veterans' Health Status Act (38 U.S.C. 527 note) is amended to read as follows: `(f) ONGOING OUTREACH TO INDIVIDUALS LISTED IN REGISTRY- (1) The Secretary of Veterans Affairs shall notify each individual listed in the Registry or, in the case of such an individual who is deceased, the surviving spouse, children, or parents of such individual, at least quarterly, by newsletter or by other means that the Secretary determines to be appropriate, of-- `(A) the status and findings of federally sponsored research relating to the illnesses of individuals who served as members of the Armed Forces in the Persian Gulf theater of operations during the Persian Gulf War or to the illnesses of the family members of such individuals; `(B) compensation and benefits, including health care and other health-related benefits, that may be provided by the Department of Veterans Affairs or the Department of Defense to an individual who served as a member of the Armed Forces in the Persian Gulf theater of operations during the Persian Gulf War or, in the case of such an individual who is deceased, to the surviving spouse, children, or parents of such an individual; and '(C) any other information that the Secretary determines to be appropriate. '(2) In preparing the newsletter or other means used to provide information as required by paragraph (1), the Secretary shall consult with veterans' service organizations. '(3) The requirement of paragraph (1) shall not apply regarding notification of any individual if that individual makes a written request to the Secretary of Veterans Affairs that the notification not be provided.'. SEC. 6. COMPENSATION BENEFITS FOR DISABILITY RESULTING FROM ILLNESS ATTRIBUTED TO SERVICE DURING THE PERSIAN GULF WAR. (a) IN GENERAL- (1) Chapter 11 of title 38, United States Code, is amended by adding at the end of subchapter II the following new section: `Sec. 1117. Compensation for disabilities associated with Persian Gulf War `(a) The Secretary shall pay compensation under this subchapter to a Persian Gulf veteran suffering from a chronic disability resulting from an undiagnosed illness (or combination of undiagnosed illnesses) that became manifest to a degree of 10 percent or more before the later of (1) October 1, 1996, or (2) the end of the two-year period beginning on the last date on which the veteran performed active military, naval, or air service in the Southwest Asia theater of operations while on active duty. http://thomas.loc.gov/cgi-bin/query/D?c103:6:./temp/~c1032ngoxoe4264 7/5/2000 Page 5 of 7 `(b) A disability for which compensation under this subchapter is payable shall be considered to be service connected for purposes of all other laws of the United States. `(c) Compensation may not be paid under this section with respect to a disability occurring in a veteran-- '(1) where there is affirmative evidence that the disability was not incurred by the veteran during service in the Persian Gulf theater of operations during the Persian Gulf War; or '(2) where there is affirmative evidence to establish that an intercurrent injury or illness which is a recognized cause of the disability was suffered by the veteran between the date of the veteran's most recent departure from that theater of operations while on active duty and the onset of the disability. '(d) The Secretary may not make payments under this section with respect to a disability for which compensation is paid under this section for any month after the month during which the Secretary determines that such disability was not incurred as the result of service in the Southwest Asia theater of operations during the Persian Gulf War. '(e) For purposes of this section, the term `Persian Gulf veteran' means a veteran who served on active duty in the Armed Forces in the Southwest Asia theater of operations during the Persian Gulf War. `(f)(1) No payment may be made under this section for any month that begins after the end of the three-year period beginning on the date of the enactment of this section. '(2) If, before the end of such three-year period, the Secretary submits to the Committees on Veterans' Affairs of the Senate and House of Representatives a report stating that, as of the date of the report, no diagnoses for the illnesses referred to in subsection (a) can be made based on current medical knowledge, such three-year period shall continue for an additional three years. '(3) The Secretary shall submit to those committees a report addressing the issue of diagnoses of such illnesses not later than April 1, 1997.'. (2) The table of sections at the beginning of such chapter is amended by inserting after the item relating to section 1116 the following new item: `1117. Compensation for disabilities associated with Persian Gulf War.'. (b) EFFECTIVE DATE- Section 1117 of title 38, United States Code, as added by subsection (a), shall take effect on October 1, 1994. SEC. 7. AUTHORIZATION OF APPROPRIATIONS FOR PERSIAN GULF ILLNESS RESEARCH. There is authorized to be appropriated to the Department of Veterans Affairs $5,000,000 for each of fiscal years 1995 through 1997 for the conduct of research, which the Secretary of Veterans Affairs, in consultation with the Secretary of Defense and the Secretary of Health and Human Services, determines would advance understanding of health risks and effects of service during the Persian Gulf War and effective means of treating such health effects. http://thomas.loc.gov/cgi-bin/query/D?c103:6:./temp/-c1032ngoxo:e4264 7/5/2000 Page 6 of 7 SEC. 8. SURVEY OF PERSIAN GULF VETERANS. (a) IN GENERAL- There is authorized to be appropriated to the Department of Veterans Affairs such sums as are needed for fiscal year 1995 for the conduct of a survey of Persian Gulf veterans to gather information on the incidence and nature of health problems occurring in Persian Gulf veterans and their families. (b) COORDINATION WITH DEPARTMENT OF DEFENSE- The survey under subsection (a) shall be carried out in coordination with the Secretary of Defense. (c) PERSIAN GULF VETERAN- For purposes of this section, a Persian Gulf veteran is an individual who served on active duty in the Armed Forces in the Southwest Asia theater of operations during the Persian Gulf War as defined in section 101(33) of title 38, United States Code. SEC. 9. AUTHORIZATION FOR EPIDEMIOLOGICAL STUDIES. (a) STUDY OF HEALTH CONSEQUENCES OF PERSIAN GULF SERVICE- If the National Academy of Sciences includes in the report required by section 706(b) of the Veterans Health Care Act of 1992 (Public Law 102-585) a finding that there is a sound basis for an epidemiological study or studies on the health consequences of service in the Persian Gulf theater of operations during the Persian Gulf War and recommends the conduct of such a study or studies, the Secretary of Veterans Affairs is authorized to carry out such study. (b) OVERSIGHT- (1) The Secretary shall seek to enter into an agreement with the Medical Follow-Up Agency (MFUA) of the Institute of Medicine of the National Academy of Sciences for (A) the review of proposals to conduct the research referred to in subsection (a), (B) oversight of such research, and (C) review of the research findings. (2) If the Secretary is unable to enter into an agreement under paragraph (1) with the entity specified in that paragraph, the Secretary shall enter into an agreement described in that paragraph with another appropriate scientific organization which does not have a connection to the Department of Veterans Affairs. In such a case, the Secretary shall submit to the Committees on Veterans' Affairs of the Senate and House of Representatives, at least 90 days before the date on which the agreement is entered into, notice in writing identifying the organization with which the Secretary intends to enter into the agreement. (c) ACCESS TO DATA- The Secretary shall enter into agreements with the Secretary of Defense and the Secretary of Health and Human Services to make available for the purposes of any study described in subsection (a) all data that the Secretary, in consultation with the National Academy of Sciences and the contractor, considers relevant to the study. (d) AUTHORIZATION- There are authorized to be appropriated to the Department such sums as are necessary for the conduct of studies described in subsection (a). SEC. 10. EXTENSION OF MARRIAGE AND FAMILY COUNSELING AVAILABILITY FOR PERSIAN GULF WAR VETERANS. (a) IN GENERAL- Section 121(a) of the Veterans' Medical Programs Amendments of 1992 (38 U.S.C. 1712A note) is amended by striking out `September 30, 1994' and inserting in lieu thereof 'December 31, 1998'. (b) AUTHORIZATION OF APPROPRIATIONS- Section 121(g) of the Veterans' Medical http://thomas.loc.gov/cgi-bin/query/D?c103:6:./temp/-c1032ngoxo:e4264 7/5/2000 Page 7 of 7 Programs Amendments of 1992 (38 U.S.C. 1712A note) is amended by striking out `and 1994' and inserting in lieu thereof `through 1999'. SEC. 11. COST-SAVINGS PROVISIONS. (a) ELECTION OF DEATH PENSION BY SURVIVING SPOUSE- Section 1317 of title 38, United States Code, is amended-- (1) by striking out 'No person' and inserting in lieu thereof '(a) Except as provided in subsection (b), no person'; and (2) by adding at the end the following: `(b) A surviving spouse who is eligible for dependency and indemnity compensation by reason of any death occurring after December 31, 1956, may elect to receive death pension instead of such compensation.'. (b) POLICY REGARDING COST-OF-LIVING ADJUSTMENT IN COMPENSATION RATES FOR FISCAL YEAR 1995- The fiscal year 1995 cost-of-living adjustments in the rates of and limitations for compensation payable under chapter 11 of title 38, United States Code, and of dependency and indemnity compensation payable under chapter 13 of such title will be no more than a percentage equal to the percentage by which benefit amounts payable under title II of the Social Security Act (42 U.S.C. 401 et seq.) are increased effective December 1, 1994, as a result of a determination under section 215(i) of such Act (42 U.S.C. 415(i)), with all increased monthly rates and limitations (other than increased rates or limitations equal to a whole dollar amount) rounded down to the next lower dollar. THIS SEARCH THIS DOCUMENT GO TO Next Hit Forward New Bills Search Prev Hit Back HomePage Hit List Best Sections Help Doc Contents http://thomas.loc.gov/cgi-bin/query/D?c103:6./temp/~c1032ngoxo:e4264 7/5/2000 TROOP HEALTH Presidential Review Directive http://www.whitehouse.gov/WH/EOP/OSTP/Science/html/troophealth.html TROOP HEALTH Presidential Review Directive Background: President Clinton established the Presidential Advisory Committee on Gulf War Veterans' Illnesses on May 26, 1995, to ensure an independent, open and comprehensive examination of health concerns related to Gulf War service. Working with the First Lady's Office, Cabinet Affairs, and the National Security Council, OSTP played the central role in establishing this Committee. The Committee issued its Final Report on December 31, 1996, documenting its review of the government's outreach, medical care, research, efforts to protect against and to assess exposure to chemical and biological weapons, and coordination activities pertinent to Gulf War veterans' illnesses. The Committee was asked by the President to continue its oversight of government efforts and they issued another report in October 1997. During the course of the Committee's deliberations, government efforts to address and to resolve veterans' concerns continued, consistent with respective agencies' missions to provide for the health and welfare of active, reserve, and retired service personnel and their dependents. This extensive review and analysis of Gulf War veterans' illnesses and risk factors have identified a number of opportunities for government action aimed at minimizing or preventing future post-conflict health concerns. Ameliorating, avoiding or, ideally, preventing such health effects can be approached through a variety of means. These include improving service personnel's understanding of health risk information; enhancing government collection of health and exposure data; coordinating agency research programs; and improving the delivery of health care services to veterans and their families, as could be accomplished by establishing effective linkages between health information systems. In its December 1996 report, the Advisory Committee recommended that the National Science and Technology Council (NSTC) develop an interagency plan to address health preparedness for and readjustment of veterans and families after future conflicts and peacekeeping missions. Status: In accordance with the Advisory Committee's recommendation, the NSTC develop this plan and released it on November 11, 1998. Acting on its primary recommendation, the President ordered the formation of the Military and Veterans Health Coordinating Board to improve health protection for our armed forces, veterans and families. The Military and Veterans Health Coordinating Board will coordinate the functions of DoD, VA, and HHS in matters concerning: research, deployment health, health care, and risk communication. This Board will oversee the implementation of the NSTC interagency plan. A National Obligation: Planning for Health Preparedness for and Readjustment of the Military, Veterans, and their Families after Future Deployments, November 1998. This report is responsive to PRD/NSTC-5. It lays out a comprehensive interagency plan for improving the health of our military, veterans and their families. Office of Science and Technology Policy 1600 Pennsylvania Ave, N.W 1 of 2 6/19/2000 12:25 PM TROOP HEALTH Presidential Review Directive http://www.whitehouse.gov/WH/EOP/OSTP/Science/html/troophealth.html Washington, DC 20502 202.395.7347 [email protected] OSTP ? To comment on this service, send feedback to the Web Development Team. Read our Privacy Policy 2 of 2 6/19/2000 12:25 PM EXECUTIVE SUMMARY The Persian Gulf Veterans Coordinating Board Action Plan with Respect to the Findings and Recommendations of the Presidential Advisory Committee on Gulf War Veterans' Illnesses Final Report The Persian Gulf Veterans Coordinating Board comprised of the Secretaries of Defense (DoD), Health and Human Services (DHHS), and Veterans Affairs (VA) greatly appreciates the effort, thought and constructive recommendations provided by the Presidential Advisory Committee on Gulf War Veterans' Illnesses in its final report. Like the Presidential Advisory Committee, the three Departments recognize that the issues surrounding Gulf War veterans' illnesses are complex. Since the end of the Gulf War, concerns have been raised as to whether there is a relationship between the illnesses (diagnosed and undiagnosed) being experienced by some Gulf War veterans and their family members and a variety of possible hazardous exposures during service, including chemical warfare agents. We share these concerns and are taking concrete steps to determine the causes of these illnesses and to provide care for veterans who are ill. The Presidential Advisory Committee's "Final Report" provides a number of important findings and valuable recommendations. This plan outlines the Departments' actions, including those already partially or fully implemented, taken in response to the findings and recommendations of the Presidential Advisory Committee in their "Final Report." This Action Plan is a dynamic document which will need to be revisited and adjusted as information becomes available and we learn more. Furthermore, in the upcoming weeks, the three Departments and the Persian Gulf Veterans Coordinating Board will develop specific timelines for the actions proposed. The plan addresses actions to be taken in the areas of outreach, medical and clinical issues, research, coordination, investigations, and chemical and biological weapons. These actions include: Initiation of a Presidential Review Directive pursuant to which the National Science and Technology Council will create an interagency plan to address health preparedness for, and readjustment of, veterans and their families after future conflicts and peacekeeping missions. The Persian Gulf Veterans Coordinating Board's Clinical Working Group will develop a comprehensive risk communication plan. Government and non-government risk communication experts will be engaged to assist in development and implementation of the plan. VA Transition Assistance Program briefings for service members separating from active duty will emphasize the VA programs and services available to Gulf War veterans and their families. VA will ensure that its outreach to the Latino populations provides information on Gulf War- related programs. A Spanish language information pamphlet and federal veterans benefits guide are being produced. Re-evaluation and enhancement of the Persian Gulf Veterans Coordinating Board will include the addition of new members to the existing Clinical, Research, and Compensation Working Groups. Further, a Deployment Planning Working Group will be established to make recommendations for interagency activities, and to monitor pre-deployment, deployment, and post-deployment medical surveillance programs. The Food and Drug Administration is preparing regulations that will solicit public and expert comment on any rule that permits waiver of informed consent for use of investigational products in military exigencies. Deployment health surveillance programs will be carried out involving pre-deployment health screening and education, deployment operational, environmental, and medical surveillance, and post-deployment health surveillance and risk communication. DoD is developing enhanced orientation and training procedures to inform service personnel about the health risks, benefits and proper use of military medical countermeasures to chemical and biological warfare agents. Military medical record keeping will be given particular priority by DoD officials at the highest levels. Computerized medical records, meditags, and compatible information systems are under development. Continuing medical education programs for health care providers in VA and DoD will be enhanced to ensure up-to-date patient education and delivery of high quality health care. DoD is developing a Directive on Combat Stress that will set forth policy, improve stress reduction and management programs, and involve military leadership in stress management and unit cohesion programs. DHHS will engage in a special effort designed specifically to impact the stigmatization of stress-associated and other mental health conditions. DoD has established the Office of the Special Assistant for Gulf War Illnesses, which is responsible for investigation of reported Gulf War-related incidents that may have health consequences. This effort involves case management and release of investigation narratives, and outreach to veterans and Military Coalition organizations. Recent activities include initiation of a Khamisiyah survey to collect information from veterans who were there and to encourage them to participate in the health registries. Service members who may have been exposed at Khamisiyah and other sites will be notified and any needed evaluation and care provided; moreover, appropriate research will be conducted. Research activities are a key component of the government's response. Related initiatives include: The Persian Gulf Veterans Coordinating Board has encouraged Public Advisory Committees be established for all large epidemiologic studies; Federal research requests for proposals include: the possible long-term health effects of chemical and other hazards (including subclinical exposure to chemical warfare nerve agents); studies of combined exposures to pyridostigmine bromide, pesticides and other agents; epidemiologic feasibility studies on Khamisiyah veterans and other groups possibly exposed to low-level chemical agents; and research on stress-related disorders. Development of a strategic plan for research into the potential health consequences of exposure to chemical and other hazards, including low-levels of chemical warfare agents; and Support for long-term mortality studies and cancer registries. The Persian Gulf Veterans Coordinating Board has engaged in a comprehensive, coordinated effort to respond to the health concerns of Gulf War veterans. DoD, DHHS and VA are committed to finding answers to Gulf War illnesses and look forward to working with the Presidential Advisory Committee on Gulf War Veterans' Illnesses to achieve this goal. Our veterans and their families deserve no less. Fact Sheet: VA PROGRAMS FOR GULF WAR VETERANS Page 1 of 5 Office of Public Affairs Washington, D.C. 20420 News Service (202) 273-5700 www.va.gov Department of Veterans Affairs VA Fact Sheet VA PROGRAMS FOR GULF WAR VETERANS April 1998 The Department of Veterans Affairs (VA) offers Gulf War veterans physical examinations and special eligibility for follow-on care, and it operates a toll-free hotline at 800-749-8387 to inform these veterans of the program and their benefits. VA also is compensating veterans under unprecedented regulations addressing undiagnosed conditions. Most Gulf veterans are diagnosed and treated; but for some, such symptoms as joint pain or fatigue have been chronic. Some respond to treatment of symptoms even though their doctors have not yet identified an underlying illness or pathogenic agent. UNEXPLAINED ILLNESS: The prevalence of unexplained illnesses among Gulf War veterans is uncertain. Answers about illness prevalence are expected through epidemiologic research involving representative samples of the Gulf veteran population (see National Health Survey, page 3). Data reviewed from about 10,000 of the most recent exams in the special Gulf War Registry health examination program showed physicians had determined that the veteran had unexplained illness in about 12 percent of the cases. GULF WAR "SYNDROME" UNDEFINED: Several panels of government physicians and private-sector scientific experts have been unable to discern any new illness or unique symptom complex such as that popularly called "Gulf War Syndrome." "No single disease or syndrome is apparent, but rather multiple illnesses with overlapping symptoms and causes," wrote an outside panel led by professors from Harvard and Johns Hopkins University that convened for an April 1994 National Institutes of Health (NIH) workshop. Similarly, neither the independent Institute of Medicine nor the Presidential Advisory Committee on Gulf War Veterans' Illnesses was able to identify any unique symptom complex or new illness. VA has neither confirmed nor ruled out the possibility of a singular Gulf syndrome. RESEARCH AND RISK FACTORS: With variation in exposures and veterans' concerns ranging from oil well fire smoke to possible contamination from Iraqi chemical/biological agents, VA has initiated wide-ranging research projects evaluating illnesses as well as environmental risk factors. The activation of four research centers has enabled VA to broaden its activity from largely descriptive evaluations to greater emphasis on hypothesis-driven research. In the last five fiscal years, the federal government committed approximately $115 million for 121 research projects related to Gulf War illnesses (see Research, page 3). Statistics More than one million servicemembers served in the Gulf from August 1990 through the end of 1997, nearly 697,000 of them serving in the first year. About 786,000 have become potentially http://www.va.gov/pressrel/gwfs.htm 7/5/2000 Fact Sheet: VA PROGRAMS FOR GULF WAR VETERANS Page 2 of 5 eligible for VA care as veterans, having separated from the military or having become deactivated reservists or Guard members. More than 67,000 veterans have responded to VA's outreach encouraging any Gulf veteran to get a free physical exam under VA's Gulf War Program. Not all are ill: 12 percent of the veterans who had the registry health exam had no health complaint (among the first 52,000 computerized records). 26 percent of the same group rated their health as poor or very poor, while 73 percent reported their health as all right to very good (the remaining 1 percent did not have an opinion). -more- Gulf War Veterans Page 2 VA Health Programs for Gulf Veterans SPECIAL HEALTH EXAMINATION: A free, complete physical examination with basic lab studies is offered to every Gulf War veteran, whether or not the veteran is ill. A centralized registry of participants, begun in August 1992, is maintained to enable VA to update veterans on research findings or new compensation policies through periodic newsletters. This clinical database could suggest areas to be explored in future scientific research. The 67,000 Gulf War veterans who have taken advantage of the physical examination program become part of a larger Gulf War Registry. As defined by 102-585, this includes about 242,000 Gulf veterans (generally including those counted in the special examination program) who have been seen for routine VA hospital or clinic care, or who have filed compensation claims or whose survivor registers a claim. If the veteran's illness defies diagnosis, the veteran may be referred to one of four Gulf War Referral Centers. Created in 1992, the first centers were located at VA medical centers in Washington, D.C.; Houston; and Los Angeles, with an additional center designated at Birmingham, Ala., in June 1995. GULF WAR VETERANS INFORMATION CENTER: VA offers a toll-free information line at 800-PGW-VETS (800-749-8387) where operators are trained to help veterans with general questions about medical care and other benefits. It also provides recorded messages that enable callers to obtain information 24 hours a day. SPECIAL ACCESS TO FOLLOW-ON CARE: VA has designated a physician at every VA medical center to coordinate the special examination program and to receive updated educational materials and information as experience is gained nationally. Where an illness possibly related to military service in the Southwest Asia theater of operations during the Gulf War is detected during the examination, followup care is provided on a higher-eligibility basis than most non-service- connected care. As with the health examination registry, VA requested and received special statutory authority to bypass eligibility rules governing access to the VA health system. STANDARDIZED EXAM PROTOCOLS: VA has expanded its special examination protocol as more experience has been gained with the health of Gulf veterans. The protocol elicits information about symptoms and exposures, calls the clinician's attention to diseases endemic to the Gulf region, and directs baseline laboratory studies including chest X-ray (if one has not been done recently), blood count, urinalysis, and a set of blood chemistry and enzyme analyses that detect the "biochemical fingerprints" of certain diseases. In addition to this core laboratory work for every veteran undergoing the Gulf War program exam, physicians order additional tests and specialty consults as they would normally in following a diagnostic trail -- as symptoms dictate. If a diagnosis is not apparent, facilities follow the "comprehensive clinical evaluation protocol" originally developed for VA's referral centers and now used in VA and military medical centers nationwide. The protocol suggests 22 additional baseline tests and additional specialty consultations, outlining http://www.va.gov/pressrel/gwfs.htm 7/5/2000 Fact Sheet: VA PROGRAMS FOR GULF WAR VETERANS Page 3 of 5 dozens of further diagnostic procedures to be considered, depending on symptoms. Risk Factors of Concern to Veterans Veterans have reported a wide range of factors observed in the Gulf environment or speculative risks about which they have voiced concerns. Some are the subject of research investigations and none have been ruled out. There appears to be no unifying exposure that would account for all unexplained illnesses. Individual veterans' exposures and experiences range from ships to desert encampments, and differences in military occupational specialty frequently dictate the kinds of elements to which servicemembers are exposed. -more- Gulf War Veterans Page 3 Veteran concerns include exposure to the rubble and dust from exploded shells made from depleted uranium; the possibility of exposure to the nerve agent sarin or some yet-unconfirmed Iraqi chemical- biological agent; and use of a nerve agent pre-treatment drug, pyridostigmine bromide. Many other risk factors also have been raised. In 1991, VA initially began to develop tracking mechanisms that matured into the Gulf War Registry as a direct consequence of early concerns about the environmental influence of oil well fires and their smoke and particulate. Medical Research Most of the 121 federally supported research projects are being conducted by non-federal investigators. Thirty-nine have been completed, 78 are ongoing and four have been awarded funds that are pending startup. Ongoing VA initiatives include: Environmental Hazards Research Centers. Through a vigorous scientific competition, VA developed major focal points for Gulf veteran health studies at three medical centers: Boston; East Orange, N.J.; and Portland, Ore. With 14 protocols among them, the centers are conducting a variety of interdisciplinary projects, including some aimed at developing a working case definition for an unexplained illness and clarification of risk factors. Some protocols involve areas of emerging scientific understanding, such as chronic fatigue syndrome or multiple chemical sensitivity, while others are evaluating or comparing factors in immunity, psychiatry, pulmonary response, neuroendocrinology and other body systems, some at the molecular level. A fourth research center, the Center for the Study of Environmental Hazards to Reproductive Health, funded in late 1996, is a joint venture of the Louisville VA Medical Center and the University of Louisville's Kentucky Institute for the Environment and Sustainable Development. One project will be addressing reproductive outcomes in Gulf War veterans. National Health Survey of Gulf War Veterans. VA's National Health Survey of Gulf War Veterans is designed to determine the prevalence of symptoms and illnesses among a random sampling of Gulf War veterans. The survey is being conducted in three phases: a mail survey of the health of 30,000 veterans of the Gulf War era, half of whom served in the theater of operations; telephone interviews of samples to determine if there are any response differences between those who responded and those who did not, and to validate responses from the mail survey; and a comprehensive physical examination for a sample of 2,000 veterans participating in the first two phases, as well as a physical examination for their families. Data from the questionnaire phase is being analyzed and the telephone interview phase is nearing completion. Completion of data collection from the physical examination phase is anticipated in mid-1999. VA Mortality Study. VA is pursuing a continuing mortality study, analyzing death certificates to determine any patterns of difference in causes of death between deceased Gulf veterans and matched controls. In their initial report covering the first two years after the war, as has been observed after http://www.va.gov/pressrel/gwfs.htm 7/5/2000 Fact Sheet: VA PROGRAMS FOR GULF WAR VETERANS Page 4 of 5 other wars, veterans of the Gulf War have experienced a higher incidence of death due to accidents. When this contributing factor is excluded, Gulf War veterans have not experienced a higher mortality rate due to disease-related causes. Both the Gulf War and non-deployed control group veterans had a lower death rate than Americans their age in general. A report was published Nov. 14, 1996, in the New England Journal of Medicine. An update of data through December 1995 revealed results similar to the published study. -more Gulf War Veterans Page 4 Exposure-Oriented Clinical Surveillance Programs. Some ongoing VA clinical evaluations respond to hypotheses of specific potential risk factors: A Baltimore clinical evaluation is providing periodic examinations of individuals thought exposed to depleted uranium (DU), a heavy metal used in armaments, including some who retained tiny embedded fragments when in the vicinity of exploding shells. Among 29 (from an initial 33) being followed, at the most recent examination no clinically significant abnormalities were found. The Department of Defense (DoD) estimates that at least 300 veterans may have been exposed to DU by inhalation in the Gulf War during incidents where U.S. troops accidentally fired on U.S. vehicles. DoD is calling these veterans to invite them to come to VA or DoD for evaluation under a protocol developed by the two departments. Another Gulf War health surveillance program is ongoing at the VA medical center in Birmingham. A pilot project there offers an extensive battery of neurological tests aimed at detecting dysfunction that would be expected after exposure to certain chemical weapons. Treatment Trial for Chronic Fatigue Syndrome and Fibromyalgia. VA and DoD are investing $10 million in a joint VA/DoD multi-center treatment trial for chronic fatigue syndrome and fibromyalgia in Gulf veterans as an outgrowth of efforts to seek candidate treatments of clearly defined medical syndromes or illnesses among groups of Gulf veterans. Outside Reviews. In addition to the work of the Presidential Advisory Committee on Gulf War Veterans' Illnesses, VA and DoD contracted with the National Academy of Sciences' Institute of Medicine (IOM) to review existing scientific and other information on the health consequences of Gulf operations. Another IOM contract calls for an assessment of health outcomes and treatment efficacy of VA efforts on behalf of Gulf veterans. VA Disability Compensation Since early 1995, VA has been providing compensation payments to chronically disabled Gulf War veterans with undiagnosed illnesses. This benefit was expanded under an April 29, 1997, regulation that essentially eliminated the date of initial manifestation of latent symptoms as a consideration in adjudication through the end of the year 2001. A disability is considered chronic if it has existed for at least six months. Outside of the new regulation, VA has long based monthly compensation for veterans on finding evidence a condition arose during or was aggravated by service. VA has approved more than 141,700 compensation claims of Gulf veterans for service injuries or illnesses of all kinds, with nearly 95,000 disabled at a compensable level who are receiving monthly benefits. The 141,700 approved claims include 1,500 approved under the new undiagnosed illnesses regulation. Interagency Coordination and White House Response The federal response to the health consequences of Gulf War service is being led by the Persian Gulf http://www.va.gov/pressrel/gwfs.htm 7/5/2000 Fact Sheet: VA PROGRAMS FOR GULF WAR VETERANS Page 5 of 5 Veterans Coordinating Board composed of VA, DoD, and the Department of Health and Human Services. Working groups are collaborating in the areas of research, clinical issues and disability compensation. The Board and its subgroups are a valuable vehicle for communication between top managers and scientists, including a staff office for the Board that follows up on critical issues and promotes continuity in agency activities. President Clinton designated VA as the Coordinating Board's lead agency. The Presidential Advisory Committee on Gulf War Veterans' Illnesses, formed by President Clinton in March 1995, met from August 1995 to October 1997 and made recommendations on Coordinating Board activities; research, medical examination and treatment programs; federal outreach; and other issues ranging from risk factors to chemical exposure reports. It published reports Feb. 15, 1996; Dec. 31, 1996; and Oct. 31, 1997. ### VA Compliments, Questions, Table of Contents Home Page Complaints, and Concerns i Last Updated:04/30/98 20:42:36 http://www.va.gov/pressrel/gwfs.htm 7/5/2000 GulfLINK DoD Fact Sheet Page 1 of 7 DoD FACT SHEET Department of Defense Gulf War Illnesses Initiatives Coordination efforts: Nov 1996. DoD requested the Institute for Defense Analyses (IDA) convene an independent panel of experts in meteorology, physics, chemistry and related disciplines to review the modeling analysis done for the CIA using the U.S. Army's Chemical and Biological Defense Command's NUSSE4 transport and diffusion model. IDA's final report is expected some time in 1997. Nov 1996. Establishment of the Office of the Special Assistant for Gulf War Illnesses under Dr. Bernard Rostker's direction. Nov 1996. DoD expands the size of the Persian Gulf Illnesses Investigation Team from 12 to 110 people. This expanded organization added significant resources to efforts to determine the causes of Gulf War illnesses. Nov 1996. Reconstitution of the Senior Level Oversight Panel. The Panel membership consists of the Chairman of the Joint Chiefs of Staff, the Secretaries of the Military Departments, the Under Secretaries of Defense and the Assistant Secretaries of Defense for Public Affairs and Health Affairs. Oct 1996. Five million dollars designated for new research into low-level chemical exposure. Oct 1996. DoD requests a review by the National Academy of Sciences on issues surrounding the causes of Persian Gulf veteran's illnesses and future force protection efforts. Oct 1996. DoD requested the Institute of Medicine re-evaluate the CCEP clinical protocols in light of Khamisiyah and the possible low-level exposures. Oct 1996. In concert with VA initiated joint health professional education programs, which included video teleconferences with health care providers. Jan 1996. In concert with DHHS began developing a "risk communication" plan on Gulf War veterans' illnesses to ensure that all communications with Gulf War veterans are effective in conveying health information. External Review Efforts: Oct 1996. The Department of Defense requested that the IOM provide recommendations for possible modification to the CCEP with respect to possible low-level exposure to chemical agents. May 1994. DoD contracted with Harrison C. Spencer, Jr., MD, Dean, Tulane University School of Public Health and Tropical Medicine, to review all aspects of unexplained illnesses among Gulf War veterans and to facilitate discussions on epidemiology and tropical medicine. Medical Care Efforts: June 1994. DoD and VA launch an effort to provide standardized health examinations and care to Gulf War veterans with health concerns. (Comprehensive Clinical Evaluation Program (CCEP)) Toll- free telephone hotlines established. Jan 1997 Update: 37,845 total participants, 28,590 participants have or will soon complete medical evaluations and 9,255 have declined medical evaluations. http://www.gulflink.osd.mil/initiativ.html 7/5/2000 GulfLINK DoD Fact Sheet Page 2 of 7 June 1993. Interagency agreement developed between DoD and VA to contract with the Medical Follow-up Agency (MFUA) of the National Academy of Sciences for epidemiological assessments and studies. Aug 1992. A medical reporting system for Gulf War veterans is established. Outreach Efforts: Dec 1996. Initiated call backs to all new 800 calls received. Oct 1996. The Defense Department announced a series of actions to reach out and seek the help of 20,000 Gulf War veterans that may have been near Khamisiyah during the period March 4-15, 1991. These actions include telephone interviews, letters and surveys as well as encouragement to participate in medical evaluation programs. Oct 1996. DoD alerts health providers of the incident at Khamisiyah. Oct 1996. Review of process for declassifying documents placed on GulfLINK. June 1996. DoD announced that some persons who served in the Gulf War may have been exposed to chemical warfare agents as a result of munitions demolition at Khamisiyah ammunition storage area. Sep 1996. DoD announced notifications of some 5,000 service members who were in the possible dispersal area of chemical agent from munitions demolition at Khamisiyah. Sep 1996. Deputy Secretary of Defense White broadened Defense Department investigative actions on Persian Gulf Veterans illnesses. Oct 1995. DoD prints a message on leave and earnings statements for active duty personnel regarding availability of the CCEP and the incident reporting 800 lines. Jul 1995. GulfLINK established. GulfLINK is a worldwide web site on DefenseLINK, which contains information specific to Gulf War issues: hotline numbers, reports issued by the Department regarding the CCEP, information gleaned from declassified documents, list of DoD medical facilities offering CCEP examinations, among others. May 1995. Toll-free Gulf War Incident Reporting Line established. May 1994. Letter mailed to all Gulf War veterans who separated from service following Gulf deployment. The letter explained the formation of the CCEP. Benefits and Compensation Efforts: Sep 1993. Instituted a policy to define Gulf War Veterans' Illnesses for Physical Evaluation Boards (PEB) ratings. Investigation: Oct 1996. Directed Army Inspector General to conduct inquiry into Khamisiyah. Mar 1995. Established the Persian Gulf Investigation Team (PGIT) to analyze classified and http://www.gulflink.osd.mil/initiativ.html 7/5/2000 GulfLINK DoD Fact Sheet Page 3 of 7 declassified material related to the illnesses of Gulf War veterans. The team was created to integrate information from operational, intelligence, medical and research data bases and coordinate with other DoD agencies, the DVA, the CIA and other non-governmental organizations. Mar 1995. DoD establishes the Senior Level Oversight Panel chaired by the Deputy Secretary of Defense and consisting of the Director of the Defense Intelligence Agency, the Principal Deputy Assistant to the Secretary of Defense for Atomic Energy, the Assistant Secretary of Defense for Health Affairs, the Under Secretary of the Army, the Deputy Assistant Secretary of Defense for Intelligence and Security, and the Deputy Director for Current Operations of the Joint Staff. Declassification Efforts: Oct 1996. Conducting a review of previously classified documents to determine whether any relate to chemical exposure or environmental agents relevant to Gulf War veterans' illnesses and should be declassified. Oct 1996. Status report: DoD Declassification Project has reviewed over 5.4 million pages of operational and intelligence information. Seven-hundred sixty-four thousand pages have been provided to the Persian Gulf Investigation Team for further review and 34,600 pages of information have been posted onto GulfLINK. Mar 1995. Establishes a declassification effort encompassing all DoD records in the research, medical, operational and intelligence communities that could relate to possible causes of the gulf War veterans' illnesses. The Army is the Executive Agent. Force Protection Efforts: Jan 1996. Based on "lessons learned" in the Gulf War, DoD refines guidelines for medical surveillance during deployments. Changes include improvements to the collection of data on health and environmental issues and potential exposures and strengthening the training to deploying troops regarding health risks and potential exposures. 1996. Developing the Joint Service Warning and Reporting Network (JWARN), an integrated, nuclear, biological and chemical (NBC) agent detection, warning and reporting system capable of interfacing with all NBC sensors and detectors. 1996. Modified the Navy's Improved Point Detection System (IPDS) to reliably detect chemical warfare agents at 90 parts per billion within 30 seconds. The IPDS has also been modified to reduce the false alarm rate caused by non-toxic agents typically found in a 'dirty' environment. 1996. Initiated procurement of over 10,000 Automatic Chemical Agent Detectors (ACADA). ACADA registers significantly fewer false alarms. 1996. Developing the Joint Service Lightweight Stand-off Chemical Agent Detector (JSLSCAD) to scan a wide field of view and automatically detect nerve or blister agents at a distance of up to 5 kilometers. 1994. Developing the Joint Service Lightweight Integrated Technology (JSLIST is a next- generation form of individual protective equipment). The JSLIST is as effective as earlier protective equipment, but is more lightweight, durable and cooler than its predecessor. Jan 1997 Update: Currently in testing stage; fielding expected in Mar 1997. 1994. Emphasized "joint service" approaches to chemical detection research, development and acquisition. The Joint Service Chemical Miniature Agent Detector is a two-year old cooperative http://www.gulflink.osd.mil/initiativ.html 7/5/2000 GulfLINK DoD Fact Sheet Page 4 of 7 effort underway to develop a family of miniature chemical agent detectors for all Services that will provide near real-time information of the presence of chemical agents. 1991. Acquired and fielded a prototype of the improved Chemical Agent Monitor (ICAM). ICAM will reduce required maintenance without lessening the monitor's performance. Research Efforts: Peer Reviewed Research Announcements Dec 1996. Requesting proposals for independent research studies from non-federal agencies and academic institutions on possible causes and treatment of Gulf War veterans' illnesses. Two million dollars has been set aside for these proposals which will address the feasibility of epidemiological studies in human subjects, including those thought to be near Kamisayah, and conduct animal studies designed to assess the possible long-term or delayed clinical effects of low-level or subclinical exposures to chemical agents which are insufficient to cause acute sighs or symptoms. May 1996. Requested proposals for independent research studies from non-federal agencies and academic institutions on possible causes and treatment of Gulf War veterans' illnesses. The U.S. Army Medical Research and Materiel Command (USAMRC) released the request of research proposals on behalf of the DoD, VA and HHS. June 1996 Update: $7.3 million was awarded for 12 research studies on epidemiological studies; health effects of PB alone and in combination with other chemicals; and clinical studies and other research on the causes, modes of transmission and appropriate treatments for Gulf War-related illnesses. Combat Stress Due 1999. A study on Combat Stress Pharmacotherapy. The study objective is on developing countermeasures to casualties of stress. Due 1999. Dysregulation of the Stress Response in the Persian Gulf Syndrome. The purpose of this study is to demonstrate that objective neurohormonal abnormalities in the human 'stress response' are present in Gulf War veterans with unexplained multiple symptons similar to fibromyalgia, chronic fatigue syndrome, somatoform disorder, multiple chemical sensitivity and that these neurohormonal abnormalities are at least partly responsible for these symptons. Due 1998. Combat Stress Diagnosis, PTSD Prevention. The study's objective is to develop diagnostic instruments for far-forward, early diagnosis of soldiers at risk for combat stress reaction (CSR) and posttraumatic stress disorder (PYSD) to allow early intervention to prevent chronic PTSD. Cancer Due 1999. Gulf War and Vietnam Veterans Cancer Incidence Surveillance. Purpose: To examine the pattern of cancer diagnosed in Massachusetts Vietnam veterans as compared with Vietnam-era veterans for the time period 1988-1993. Another objective is to establish a database linkage for New England area Persian Gulf War veterans so as to be able to examine cancer incidence in this cohort at a later point in time. Pyridostigmine Bromide (PB) Studies Due 1999. Neurobehavioral and Immunological Toxicity of Pyridostigmine, Permethrin, and DEET in Male and Female Rats. This study's objectives is to determine the effects of small doses, alone of in combination, in males and females. http://www.gulflink.osd.mil/initiativ.html 7/5/2000 GulfLINK DoD Fact Sheet Page 5 of 7 Due February 1997. A study on Male/Female Differential Tolerances to Pyridostigmine Bromide. March 1995. Initiated a Pyridostigmine Synergistic Study to determine potential toxic interactions when pyridostigmine bromide, permethrin and DEET are given concurrently to male rats by gastric lavage. In addition, DoD analyzed concerns about possible synergism of PB taken by service members during the Gulf War. Report published May 31, 1995. The principle finding is that there is significant increase on the lethal effect in rats given PB, permethrin and DEET simultaneously by gavage when compared to expected additive lethal effect of the individual compounds. May 1992. Launched retrospective studies involving military use of Pyridostigmine (PB) as a pretreatment for nerve agent poisoning initiated with the FDA to help perform retrospective evaluation of effects of PB use in the Persian Gulf. Completed May 1992. Results indicated that pyridsotigmine continues to be safe. Side effects reported were primarily gastrointestinal in nature. Headaches were also reported by the respondents. Infectious Diseases Sep 2001. Forward Deployable Diagnostics for Infectious Diseases. Ongoing. Jan 2000. Development of a Leishmania Skin Test Antigen (LSYA). The study objective is to develop a reliable skin test for Leishmania infection. Jul 1998. Identification of the Genetic Factors Which Control Tropism in Leishmania. Ongoing. 1997. Serologic Diagnosis of Viscerotropic Leishmaniasis (VTL) The goal of the study is to identify an antibody-based serologic assay to detect active infection with Leishmania parasites causing the clinical syndrome of VTL using a standard format such as enzyme-linked immunosorbent assay. To date, none of these peptides reliably discriminates infected from noninfected samples. Low-Level Chemical Exposure Studies Due 1998. A DoD study on Chronic Organophophorus Exposure and Cognition. This study will evaluate the effects of low-level sub-chronic exposure to an organophosphorus cholinesterase inhibitor on normal cognitive function in animal models. The long term goals are to identify the underlying mechanisms of organic brain damage related to environmental toxins to develop novel treatment strategies to improve memory/cognitive performance in affected patients. Oil Well Fire Studies May 1993. Kuwait Oil Fires Troop Exposure Assessment Model (TEAM). This aim of the model is to address the risks to DoD troops located at the eight fixed air/soil sampling sites where actual environmental data were collected and analyzed. This project is ongoing. A majority of the data hae been entered into the system. Both satellite plume and modeled plume boundaries have been digitized. Over 2,000,000 records have been entered into the TEAM database. May 1991. Kuwait Oil Fire Health Risk Assessment. This environmental monitoring study attempted to characterize the concentration of pollutants that DoD personnel were exposed to during their deployment in the Gulf region. Completed Feb 1994. The results indicate the potential for significant long-term adverse health effects for the exposed DoD troop or civilian employee populations is minimal. Other fuels http://www.gulflink.osd.mil/initiativ.html 7/5/2000 GulfLINK DoD Fact Sheet Page 6 of 7 Due 1998. Characterization of Emissions from Heaters Burning Leaded Diesel Fuel in Unvented Tents. The objective is to conduct a study that simulates human exposure to aerosols in invented tents heated by leaded diesel fuel, with the tent and fuel composition similiar to those used in the Persian Gulf, so that the contribution of exposure to this in-tent pollutant can be estimated. Depleted Uranium Studies Due 1998. Carcinogenicity of Depleted Uranium Fragments. Study began Jan 1995. The objectives of this study is to assess the carcinogenic risks associated with long-term exposure to DU-containing shrapnel in wounds. Due 1998. Health Risk Assessment of Embedded Depleted Uranium: Behavior, Physiology, Histology and Biokinetic Modeling. The objectives of this study is to evaluate health risks associated with tissue-embedded depleted uranium (DU) fragments by studying the behavioral, physiological, and histological consequences of implanted DU in a rodent model. 1994. Kuwait Oil Fire Health Risk Assessment. Completed. 1993. Report to Congress: Health Consequences of the exposure of PG Force members to the Fumes of Burning Oil. Completed. Birth Outcome Studies Due 1997. DoD, VA and CDC are conducting three epidemiological studies that addresses the issue of adverse reproductive outcomes among a number of health related topics. -Study 1: A comparative study of pregnancy outcomes among Gulf War veterans and other active- duty personnel. Current status: data collected, manuscripts being prepared. -Study 2: Infertility and Miscarriage in Gulf War veterans. Current status: Data collection stage. -Study 3: Prevalence of Congenital Anomalies Among Children of Gulf War veterans. Current status: Data collection stage. June 1994. U.S. Air Force epidemiologists reviewed pregnancy outcomes among families of Gulf War veterans assigned to Robins AFB, Georgia. Congenital malformations and miscarriages in USAF personnel assigned to Robins AFB were at or below those of the U.S. general population. Jan 1994. Conducted an investigation on 6,392 pregnancies occurring at six selected Army hospitals comparing miscarriage rates for Pre-Desert Storm (1990) and Post-Desert Storm (1991). Results showed that there was no difference among the populations (8% for both time periods - which is almost half that experienced in the general population (15%)). Sep 1993. The Army conducted a study at William Beaumont Army Medical Center examined the postulation that emotional stress and exposure to chemicals were risk factors for spontaneous abortion or miscarriage. Miscarriage rates before and after the Gulf War deployment were evaluated. The results showed no difference in the rates. Health Risk Assessment Studies Due 1998. Study on Acute and Long-Term Impact of Deployment to Southwest Asia on the Physical and Mental Health of Soldiers and their families. http://www.gulflink.osd.mil/initiativ.html 7/5/2000 GulfLINK DoD Fact Sheet Page 7 of 7 Due 1997. Epidemiologic studies of Morbidity among Gulf War veterans: A search for Etiologic Agents as Risk Factors (this is one of the seven epidemiologic studies, of which the three birth outcome studies are included). January 1995. Released a Comparative Mortality Study among U.S. Military Personnel Worldwide during Operation Desert Shield and Desert Storm. Results: Except for hostile action deaths, the overall mortality experience among U.S. military personnel who deployed to the Gulf War did not significantly differ from that observed among U.S. military who did not deploy to the Gulf. Nov 1994. The Pennsylvania State Health Department, VA and DoD requested that CDC conduct an independent evaluation of a group of Air National Guard Gulf War veterans for any pattern of unusual illnesses. Phase 1 and 2 completed. Results: Phase 1 found no consistent abnormalities identified on physical examination. Phase 2 established that in all units, symptom rates (symptoms being fatigue, mood and cognition disorders and musculoskeletal complaints) were higher in veterans who had been deployed to the Gulf than in those not deployed. Nov 1992. Released a report on the Navy Seabee outbreak investigation. Sep 1992. Reported that the Army has directed a standing operating procedure for evaluating afflicted Persian Gulf veterans. Aug 1992. Released a memo from Area Medical Clinic Director, Dhahran, Saudi Arabia, reporting no mystery illness in the local population of Saudi and American citizens. Mar 1992. Released a study on the Indiana outbreak investigation done by Walter Reed Army Institute of Research (WRAIR). Jan 1992. Published a summary of Health Risk Assessment of the 11th Armored Cavalry Regiment. This fact sheet is not intended to be all inclusive, but instead present a representative sample of past, present and future DoD efforts. As of Jan 7, 1997 http://www.gulflink.osd.mil/initiativ.html 7/5/2000 Gulf War Veterans' Illnesses Page 1 of 4 HUMAN SERVICES USA Assistant Secretary for Legislation (ASL) HEALTH DEPARTMENT OF HEALTH & HUMAN SERVICES OF Mission Division Grants Testimony Other Links ASL Home DEPARTMENT Testimony Testimony on Gulf War Veterans' Illnesses by 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 U.S. Department of Health and Human Services Before the House Committee on Government Reform, Subcommittee on National Security, Veterans' Affairs and International Relations 180808 HOME February, 2000 CONTACT US Mr. Chairman, thank you for the opportunity to update the Subcommittee on the Centers for Disease Control and Prevention's (CDC) research programs pertaining to Gulf War veterans' illnesses and to discuss the General Accounting Office's (GAO) report, "Gulf War Illnesses: Management Actions Needed to Answer Basic Research Questions." I am Dr. Drue Barrett, Chief of the Veterans' Health Activity Working Group in the Division of Environmental Hazards and Health Effects of the National Center for Environmental Health (NCEH). I serve as CDC's liaison to the Department of Health and Human Services (HHS) on Gulf War issues and I am a member of the Research Working Group of the Persian Gulf Veterans Coordinating Board. NCEH has been designated as the lead Center at CDC for addressing Gulf War veterans' health concerns, however other Centers within CDC have also been involved in this effort, most notably, the National Center for Infectious Diseases. The purpose of my testimony is to update the Committee on the extent of CDC's Gulf War research activities, the productivity of our research efforts, and how our research has been coordinated with the research being conducted by other Federal agencies. Completed CDC-funded Gulf War Studies: Before describing our current studies, I would like to review the results from two completed CDC-funded studies because these studies are pertinent to questions raised by the GAO regarding the success of the federal government in documenting the symptoms of Gulf War veterans. The Iowa study, conducted in collaboration with the Iowa Department of Public Health and the University of Iowa, was one of the first population-based epidemiologic studies to document that Gulf War veterans are reporting more medical and psychiatric conditions than their non-deployed military peers. In fact, this study was recently described by the Institute of Medicine as "perhaps the strongest study on Gulf War veterans' experience of symptoms related to deployment in the Gulf." The 3,695 subjects who completed this study were selected from a larger population of almost 29,000 military personnel who listed Iowa as their home of record. Furthermore, the subjects in this study were specifically selected to represent individuals from all four branches of the military, and include both regular military personnel and National Guard and reservists. Seventy-six percent of the eligible study subjects completed the detailed telephone interviews. This study is also http://www.hhs.gov 7/5/2000 Gulf War Veterans' Illnesses Page 2 of 4 one of the first controlled epidemiological studies to evaluate the health consequences of the Gulf War. The study included a carefully selected comparison group of military personnel who were not deployed to the Persian Gulf but who served during the time of the Gulf War. The Iowa study found that the Gulf War military personnel were more likely than those who did not serve in the Gulf War to report symptoms suggestive of cognitive dysfunction, depression, chronic fatigue, post-traumatic stress disorder, and respiratory illness (asthma and bronchitis). The conditions identified in this study appear to have had a measurable impact on the functional activity and daily lives of these Gulf War veterans. Among Gulf War veterans, minimal differences were observed between the National Guard or reserve troops and the regular military personnel. The results of the Iowa study were published in the Journal of the American Medical Association in 1997. In addition, a number of other manuscripts from the Iowa study have been published, are in press, or are currently in the process of peer review. These include an article on quality of life and health service utilization among military personnel reporting multiple chemical sensitivities, published in 1999 in the Journal of Occupational and Environmental Medicine, and an article on symptom prevalence and risk factors of multiple chemical sensitivities, in press in the Archives of Internal Medicine. Manuscripts are currently being considered at peer-reviewed journals on the topics of defining a Gulf War syndrome, the relationship between post-traumatic stress disorder and physical health status, and self-reported injuries among Gulf War veterans. Likewise, the CDC Air Force study has significantly contributed to our understanding of the health consequences of the Gulf War. This study organized symptoms reported by Air Force Gulf War veterans into a case definition, characterized clinical features, and evaluated risk factors. The cross-sectional questionnaire was sent to 3723 currently active volunteers from four Air Force populations. Clinical evaluations were performed on 158 Gulf War veterans from one unit, irrespective of health status. A case was defined based on reporting one or more chronic symptoms from at least 2 of 3 categories (fatigue, mood-cognition and musculoskeletal) and was further characterized as mild-to-moderate or severe depending on the severity of the reported symptoms. The prevalence of mild-to-moderate and severe cases were 39% and 6%, respectively, among 1155 Gulf War veterans versus 14% and 0.7% among 2520 non-deployed veterans. Fifty-nine (37%) clinically evaluated Gulf War veterans were non-cases, 86 (54%) were mild-to-moderate cases and 13 (8%) were severe cases. The key observation of the study was that Air Force Gulf War veterans were significantly more likely to meet criteria for severe and mild-to-moderate illness than were non- deployed personnel. There was no association between the chronic multisymptom illness and risk factors specific to combat in the Gulf War (month of season of deployment, duration of deployment, duties in the Gulf War, direct participation in combat, or locality of Gulf War service). The finding that 15% of non-deployed veterans also met illness criteria was equally important and suggests that the multisymptom illness observed in this population is not unique to Gulf War service. The clinical evaluation component of the study found that neither mild-to-moderate nor severe cases were associated with clinically significant abnormalities on physical examination or routine laboratory tests. However, Gulf War veterans classified as having mild-to-moderate and severe illness had a significant decrease in functioning and well-being compared with non-cases. The results from this study were published in CDC's Morbidity and Mortality Weekly Report in 1995 and in the Journal of the American Medical Association in 1998. In addition, an article from the Air Force study examining the relationship between deployment stressors and chronic multisymptom illness is currently in press in the Journal of Nervous and Mental Disorders. Current CDC-funded Gulf War Studies: CDC is currently funding a follow-up to the Iowa study focusing on evaluating self- reported symptoms of asthma. This study involves a detailed clinical evaluation of a sample of subjects who completed the initial telephone survey. This evaluation includes a physical examination; tests of lung functioning; questions regarding medical, occupational, and exposure history; assessment of functional status and quality of life; and assessment of psychiatric history and personality functioning. The examinations are being conducted at the University of Iowa Hospitals and Clinics in Iowa City, Iowa. http://www.hhs.gov 7/5/2000 Gulf War Veterans' Illnesses Page 3 of 4 This study is in its final phases of data collection and we anticipate that results should be available later this year. The University of Iowa has also been funded by the Department of Defense (DoD) to conduct validation studies of additional health outcomes among participants of the telephone survey. These include validation of depression, cognitive dysfunction, and fibromyalgia. CDC is providing technical assistance to DoD and the University of Iowa for this study. We are also funding the Boston University School of Public Health to conduct a study examining the relationship between cognitive function and symptom patterns among Gulf War veterans. In one component of this study, functional magnetic resonance imaging (fMRI) is being used to examine possible differences in brain activation patterns between Gulf War veterans and era controls with different levels of symptoms. A second component of the study is using a new data-driven mathematical technique, Logical Analysis of Data, to examine how Gulf War veterans' symptoms cluster together. This may provide useful information for determining etiology or for developing a case definition. Finally, this study also includes a component examining the neuropsychological functioning of a sample of Danish Gulf War troops. Investigators are currently in the data collection phase for the fMRI component of this study and in the data analysis phase for the other two components. We anticipate that this study will be complete by the end of this year. Finally, CDC is funding the University of Medicine and Dentistry of New Jersey- Robert Wood Johnson Medical School to conduct a study examining case definition issues. The study will assess the persistence and stability of Gulf War veterans symptoms over time, compare the performance of data-driven case definitions to existing definitions for medically unexplained symptoms, and examine the role of psychiatric conditions in Gulf War veterans' unexplained illnesses. We originally expected that this study would be completed in late 2000, however the process of protocol development and clearance took somewhat longer than we anticipated. Thus, we expect that this study will require an additional year to complete. Research Collaborations: CDC is collaborating with DoD and the Department of Veterans Affairs (VA) on a number of projects including a study of health outcomes among Saudi Arabia National Guard members and a study of Amyotrophic Lateral Sclerosis (ALS) among Gulf War veterans. This collaboration has included providing input on study protocols, reviewing human subjects issues, and assisting in laboratory assessments. Future Gulf War Research Planning: In addition to these current research projects, CDC, in collaboration with other HHS agencies, recently sponsored a conference to develop future Gulf War research recommendations. On February 28 through March 2, 1999, CDC brought together scientists, clinicians, veterans, veterans' service organizations, Congressional staff, and other interested parties to discuss and make recommendations regarding the direction of future research on undiagnosed illnesses among Gulf War veterans and their links with multiple chemical and environmental exposures. Concurrent workgroups were convened in order to develop research recommendations in four areas: pathophysiology, etiology, and mechanisms of action; assessment and diagnosis of illnesses; treatment; and prevention of illnesses in future deployments. This conference highlighted the importance of including veterans in the process of planning and implementing research. Veterans and scientists alike expressed that they found the process useful and that future similar efforts should be encouraged. A report is soon to be released that summarizes the outcome of each of the four workgroup sessions. It is anticipated that this report will be of interest to a broad range of individuals and organizations and may provide the basis for development of new research collaborations and exchanges. Recommendations for new research will need to be considered in light of the existing research portfolio of the Research Working Group in order to avoid unnecessary duplication of efforts. http://www.hhs.gov 7/5/2000 Gulf War Veterans' Illnesses Page 4 of 4 Coordination of Federal Research Efforts: Finally, I would like to address the issue of coordination of federal research efforts. There has been HHS representation on the Persian Gulf Veterans Coordinating Board Research Working Group since its inception. In addition to CDC, the Office of the Secretary, the National Institutes of Health, and the Agency for Toxic Substances and Disease Registry are represented. Through its membership, HHS has been involved in providing guidance and coordination for DoD, VA, and HHS research activities relating to Gulf War veterans. Specifically, this has included assessing the state and direction of research, review of government research concepts as they are developed, identification of gaps in factual knowledge and conceptual understanding, and providing recommendations regarding research direction. The Research Working Group also serves as a forum for research data exchange among the three departments and among federally funded investigators. CDC's role in this area has included providing information on the status of projects for a research database of all VA, DoD, and HHS research activities, input on the Annual Report to Congress on federally sponsored Gulf War Veterans' Illnesses research, and participation on the planning committee for the federal investigators meeting where new research results are shared. Conclusions: An intensive research effort to address Gulf War veterans' health concerns has been mounted by federal agencies and non-governmental scientists. As of 1999, there have been 145 federally-funded research projects on Gulf War veterans' illnesses with a cumulative expenditure of $133.5 million for research from FY94 through FY99. These projects represent a broad spectrum of research efforts, ranging from small pilot studies to large-scale epidemiology studies addressing mechanistic, clinical, and epidemiological issues. Similar efforts have been initiated in other coalition countries, most notably in the United Kingdom and Canada. In addition, numerous review panels and expert committees have evaluated the available data on Gulf War veterans' illnesses. As noted in the GAO report, despite these extensive research and review efforts, many questions remain regarding the health impact of the Gulf War. However, these remaining questions do not reflect scientific indifference; instead they reflect the complexity of assessing and predicting the health impact of military deployments. Despite this complexity, the federal research effort continues in an effort to uncover the causes of illnesses among Gulf War veterans so that effective treatment approaches can be developed and similar illnesses in future deployments can be prevented. Mr. Chairman, this concludes my testimony. I would be happy to answer any questions the Subcommittee may have. Privacy Notice I FOIA I What's New FAQs Reading Room Site Info http://www.hhs.gov 7/5/2000 THE PERSIAN GULF VETERANS COORDINATING BOARD ACTION PLAN WITH RESPECT TO THE FINAL REPORT OF THE PRESIDENTIAL ADVISORY COMMITTEE ON GULF WAR VETERANS' ILLNESSES (PAC) CHAPTER 2: THE GOVERNMENT'S RESPONSE Findings and Recommendations Regarding Outreach Finding 2-1: In their geographic areas, Vet Center staffs have established working relationships with the veterans community, veterans service organizations, local municipal and state veterans liaison offices, in-region Guard and Reserve units, community social services organizations, local Department of Veterans Affairs (VA) medical center personnel, and military establishments. These relationships enable Vet Centers to provide education and outreach to local communities about issues and clinical programs concerning Gulf War veterans, and a significant number of Gulf War veterans use their services. Finding 2-2: The outreach initiative of VA's Persian Gulf Family Support Program was an effective method of communicating information about Gulf War veterans illnesses--in particular the established government clinical programs--to veterans, Reservists, National Guard members, and local communities. The outreach component used trained, knowledgeable personnel in the field to establish a communication network with the community and deliver specific information directly to Gulf War veterans. Recommendation: Department of Defense (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 Guard personnel, and other veterans. General, less specific outreach methods--e.g., hotlines and public service announcements--should be viewed as an important supplement, but not as replacements. Response: Concur. After the conclusion of the Persian Gulf War in 1991, Vet Center services were made available to those who served in the Persian Gulf. These Vet Centers had seen over 25,000 Persian Gulf veterans by the summer of 1992. This prompt response by the Vet Centers to the acute Post-Traumatic Stress Disorder (PTSD) and other post-war readjustment difficulties, such as family and employment problems, illustrates VA's commitment to early intervention and outreach. As of September 30, 1996, Vet Centers had seen more than 74,000 Persian Gulf veterans. VA can apply the same successful Vet Center strategy of targeting specific veteran populations, developing intensive networks, and creating referral relationships with other community agencies to formulate health education and risk communication campaigns. These field-based risk communication and health education outreach programs will be directed specifically at Persian Gulf veterans, and Reserve and Guard personnel. Persian Gulf veterans and their families will be invited to participate, as appropriate, in future VA outreach and focus sessions, so VA can provide them with risk communication and health education information and learn more about their health care needs. VA's annual National Training Program conferences update VA medical center Persian Gulf Registry physicians, health care professionals, and Vet Center service providers on the latest information available from the clinical and scientific studies of Persian Gulf veterans' illnesses. Risk communication and health education issues will continue to be included in future National Training Program continuing medical education conferences. VA health care providers attending these conferences will be able to recognize the most common symptoms and diagnoses of Persian Gulf veterans and communicate potential health risks of Gulf War service to their patients. DOD agrees that a strengthened "field-based" outreach system is needed to address post-deployment follow-up. Likewise, DOD has in place an extensive system available for outreach to active duty service members and their families and to Reserve and Guard personnel who are currently associated with DOD. DOD is committed to better using that system, including the command structure, both for Gulf War veterans and for future post-deployment follow-up. As one example, with respect to active duty personnel and their families, DOD will use the Family Service Centers which can achieve the effectiveness of the VA field-based model. Liaison between the Assistant Secretary of Defense (ASD)/Health Affairs and the ASD(Force Management Policy)/Personnel Support, Families and Education will result in a more effective strategy to use existing organizational resources to ensure appropriate dissemination of information. DOD will also make better use of its health personnel with respect to health education and risk communication. These health personnel, including frontline medics, are located throughout the world with our active duty personnel and are supporting active duty personnel and their families on a daily basis. The Office of the Special Assistant for Gulf War Illnesses has in place an outreach office which aggressively performs call-backs to follow-up on hotline calls. This is the first over-arching DOD effort to establish two-way communication in the form of a true dialogue versus only receiving information. These call backs not only provide an in-depth debrief, but also, a single point of contact between the Office of the Special Assistant for Gulf War Illnesses and the reporting Gulf War veteran for the future. The process involves the veteran in the incident investigation process in a significant and meaningful way. DoD's medical-treatment facilities (MTFs) at military installations nationwide offer medical outreach and treatment for Gulf War veterans. As service members call the Comprehensive Clinical Evaluation Program (CCEP) Hotline, their first callback is from the nearest MTF to schedule their evaluation. DOD is in the process of developing a new more proactive GulfLINK website to include adding a Frequently Asked Questions (FAQ) page to address some of the common concerns of those who served in the Gulf, their family members, and the general public. Two-way E-mail will also be added to GuItLINK to allow users to quickly query experts from the Office of the Special Assistant and receive an expeditious reply. The intent is to publish all available public information as well as periodic status reports on investigations in progress in a timely manner. DoD will employ nationally recognized experts in the field of risk communications to develop a DoD strategic plan that is: (1) fully coordinated and integrated with the Persian Gulf Veterans Coordinating Board (PGVCB) plan; (2) provides for the conduct of risk communication training for all DoD personnel involved with direct public interface; (3) seeks the advice of experts on specific events or issues affecting our veterans; and, (4) allows for the review of all products to ensure the most effective dissemination of information. Additionally, DoD recognizes that feedback is an important aspect of risk communication and will ensure the measures are in place to evaluate the effectiveness of this communication plan. VA has a long-standing relationship and communication network with Veterans Service Organizations (VSOs). Additionally DoD's Office of the Special Assistant for Gulf War Illnesses is establishing relationships with member organizations of the Military Coalition that are critical to providing information at the local level. The objective is to share information with the Military Coalition Organizations (MCOs) nationwide, and to invite their participation in information-sharing, investigations and a search for solutions process. This includes encouraging publications of information in Military Coalition organization newsletters and magazines, presentations and briefs, and demonstrations of military equipment that pertains to the detection and identification of chemical warfare agents. The PGVCB will incorporate these activities into the comprehensive risk communication plan. Finding 2-3: Ninety percent of separating active duty service members attend Transition Assistance Program (TAP) workshop briefings conducted jointly by DoD, VA, and DOL. VA benefits briefings during the TAP workshop could be an effective method of outreach about DoD and VA programs for evaluating Gulf War veterans illnesses, yet there is no evidence their clinical programs receive mention. Recommendation: VA should direct its Transition Assistance Program workshop benefits counselors to specifically mention DoD and VA programs related to Gulf War veterans' illnesses. Response: Concur. The outcome outlined by the recommendation is a part of Veterans Benefits Administration's (VBA) transition assistance briefings. We agree that VA benefits briefings conducted in association with TAP workshops are an effective method of outreach to Gulf War veterans. To ensure the effectiveness of these briefings, the Veterans Services Program Staff (VSPS) (which is responsible for TAP administration within VA) provides Military Services Coordinators (MSCs) with materials and/or guidance related to briefing content. The VSPS has previously directed MSCs to include Gulf War issues in their benefit presentations. In addition, VSPS creates and distributes overheads, photographic slides, fact sheets, and pamphlets for use in benefit presentations. The latest version of the slides includes a series covering the following Persian Gulf War issues: (1) disability compensation for undiagnosed illnesses; (2) the types of evidence needed to support compensation claims for undiagnosed illnesses; (3) other VA programs or services available to Gulf War veterans and their families; and, (4) toll-free numbers that service members may call for more detailed information and assistance. The VSPS has distributed a revised set of transparencies to MSCs which provide more information about VA and DoD programs for Gulf War veterans. These transparencies stress the importance of continued discussion of VA and DoD programs for Gulf War veterans during benefit briefings. DoD supports this approach and the DoD Director of Transition Support and Services will coordinate with the VA and help ensure that information on DoD and VA clinical Persian Gulf veterans health care and compensation programs is effectively provided to separating active duty service members. The Compensation and Benefits Working Group of the PGVCB will monitor this process and explore options for improvement. Finding 2-4: Through the initiatives of the Women Veterans Health Programs, VA has implemented a range of efforts to inform women veterans about available health services. Recommendation: VA should ensure that its initiatives under the Women Veterans Health Programs specifically provide information about Gulf War-related programs. Response: Concur. Operations Desert Shield and Desert Storm involved the largest deployment of women to a war zone in our nation's history; women composed 7 percent of the approximately 697,000 deployed troops. VA's Office of Public Health and Environmental Hazards is the Veterans Health Administration (VHA) program office for both the Women Veterans Health and Persian Gulf Veterans Programs. In the past, the Office has coordinated VA program planning in these two areas. VHA is committed to long term continuation of these efforts as they relate to medical care, research outreach and education for Women who served in the Persian Gulf War. Information will be included regarding Gulf War-related women veterans' programs in both Persian Gulf and Women Veterans Health communications and education programs in May and June 1997. The Clinical Working Group (CWG) of the PGVCB will monitor these efforts and explore options for improvement. Finding 2-5: In regions with significant Latino populations, Veterans Centers and VAMCs deliver bilingual, cross-cultural outreach services. Recommendation: VA should ensure that its outreach to Latino populations specifically provides information about Gulf War-related programs. Response: Concur. In 1996, VA published and distributed copies of the first Spanish language version of Federal Benefits for Veterans and Dependents entitled "Beneficios Federales Para Veteranos y Sus Dependientes." The Spanish language benefits book was distributed to all VA Regional Benefits Offices and VA Medical Centers with significant Latino populations. This booklet provides information regarding compensation benefits for chronically disabled veterans who suffer from undiagnosed illness believed to be the result of their service in the Gulf. In addition, Gulf War veterans are informed about the Persian Gulf War Registry Program and special eligibility for any Persian Gulf War veteran who may have been exposed to a toxic substance or environmental hazard during the Gulf War. The Spanish language version of the benefits book also lists the Persian Gulf Veterans information phone number (800-PGW-VETS). VA will redistribute a 1997 version of the Spanish language benefits book later this year. VA will also conduct Spanish language print, radio and television interviews designed to inform Gulf War veterans of their benefits as well as update them on VA's research agenda. In addition, VA is developing a new information pamphlet for Gulf War veterans that will be distributed in English and Spanish by Summer 1997. Finding 2-6: While newspaper articles and television and radio broadcasts disseminated by DoD's American Forces Information Service provide adequate media coverage of Gulf War illnesses-related issues, few of the media products perform the outreach functions of publicizing government-sponsored Gulf War veterans clinical programs and methods of referral into them. Recommendation: 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 Armed 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. Response: Concur. VA conducted a Gulf War Veterans Public Service Announcement (PSA) campaign in 1995 consisting of video, radio and print announcements. The Committee's Interim Report recommended that the content of the announcements be more specific regarding services available to and illnesses suffered by Gulf War veterans. VA revised the PSAs and conducted another outreach campaign in 1996. VA hired a media marketing firm to distribute the print, radio and television PSAs and provide follow-up reports to VA regarding market penetration. In addition, VA purchased satellite time to conduct one-on-one interviews with television stations in the country's top media markets. These interviews afforded VA prime time viewership and provided substantial outreach to Gulf War veterans and their families. VA's Regional Public Affairs Offices will continue to augment its outreach effort by placing news articles in regional media outlets to inform veterans and their families of available benefits. Since the Interim Report, the VA Persian Gulf Helpline has begun to collect data on how veterans heard about that service. A summary will be provided to the Committee. In late FY 96, DoD conducted a survey that addressed the awareness of the CCEP and the Gulf War Incident Hotline in a representative sample of 54,000 active duty and retired active duty Gulf War veterans. This survey indicated that a relatively low proportion of active duty and retired active duty Gulf War veterans are aware of the CCEP and the Incident Hotline. The survey findings will be useful in designing more effective communication strategies for future outreach efforts. DoD agrees that there is a need to assess which communications mechanisms are most effective for reaching Gulf War veterans and will continue to do so in cooperation with the PGVCB. A critical element of DoD's new Office of the Special Assistant for Gulf War Illnesses is a public affairs/public outreach arm that is focused on reaching the public through the organizations of the Military Coalition command information programs and media channels. One of the primary charters of public outreach is to develop an effective dialogue and to solicit feedback from veterans. The Office of the Special Assistant will develop an assessment of all means of reaching out and informing the public to include Armed Forces Information System (AFIS) and the Armed Forces Radio and Television Service (AFRTS). This will be a part of DoD's strategic public affairs plan and risk communication strategy as previously discussed (response to 2-2). AFIS is a primary channel for disseminating information to active duty and reserve component service members and their families. The information provided by AFIS and used in installation and activity newspapers is available to all uniformed and civilian personnel departmentwide. In addition, AFRTS is available to service members and DoD civilians at 156 overseas locations and aboard ships at sea. The CCEP toll-free number has been publicized through the Armed Forces Radio and Television Service, and has been reported in over 1,100 DoD publications around the world. AFIS is also available via the Worldwide Web. The CCEP hotline number will continue to be publicized in numerous AFIS print and broadcast products. We will continue to make our target audiences aware of the toll-free number and other important information on Gulf War Illnesses. These efforts will be incorporated into the PGVCB's comprehensive risk communication plan. Finding 2-7: DoD's 1996 Internal Information Plan--Persian Gulf Illnesses describes its Comprehensive Clinical Evaluation Program, yet fails to provide the most basic information on how to register for it. Recommendation: DoD should reissue its Internal Information Plan on Gulf War related illnesses. It should make a special effort to note the revision provides the toll-free number and that individuals are encouraged to register for its Comprehensive Clinical Investigation Program (CCEP). It also should take the opportunity to provide updated information. Response: Concur. The AFIS Internal Information Plan (IIP) is a management plan which lists broad topic areas to be addressed by DoD internal information media during the year. Topics for FY 96 included subjects such as recycling, the flag, child abuse and financial management. One page was allocated to each topic. Gulf War illnesses will be included as a major focus in next year's plan. Additional public affairs guidance on encouraging service members to register in the CCEP, how to register and publication of the toll-free number will be issued. The PGVCB risk communication plan will incorporate information on registration for clinical examinations. Recommendation: 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. Response: Concur. VA, DoD and the Department of Health and Human Services (DHHS) will collaborate, through the PGVCB, to refine goals and objectives and develop more effective methods for risk communication regarding Gulf War veterans' illnesses. Risk communication will address possible exposure to hazards (chemical, biological, and environmental hazards), explain potential health effects from these risk factors, and provide information on studies on potential health risks and how to respond to those risks. In that effort, DoD and VA will involve DHHS and their risk communication experts as well as using the expertise of nationally recognized experts in the field of risk communications. Since June 1996, when the Defense Department first learned of the potential exposure of our troops to chemical agents during the destruction of ammunition and equipment at Khamisiyah, DoD has conducted an extensive multimedia campaign designed to inform soldiers and veterans of the events at Khamisiyah. Our coordinated and expanded outreach program asking soldiers to provide information of their experiences at or near Khamisiyah and encouraging them to seek assistance for health problems they believe may be a result of their service in the Persian Gulf has been well-received, providing much new information and involving thousands more veterans in the process. In order to accomplish these goals, the PGVCB CWG will conduct a day-long conference with risk communication experts to design a Gulf War veteran risk communication plan. The plan will take into account the size and location of the Gulf War veteran population and the existing communications tools of the Departments including direct mail, newsletters, radio, print and television media. The goal of the CWG will be to develop a risk communications plan that will be effective communicating with Gulf War veterans and their families regarding information on possible exposures to environmental hazards, potential health effects, treatment options and ongoing research. The plan will be submitted to the Committee by May 1, 1997. Finding 2-8: Effective risk communication is essential to the government's credibility on Gulf War veterans' illnesses, but DoD and VA have not seriously attempted to educate veterans about health effects of service in the Gulf War or to establish a dialogue concerning research programs relevant to veterans' concerns. Finding 2-9: Several federal agencies have developed, tested, and validated techniques for health risk communication that could be adopted by DoD and VA. Recommendation: 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 (ATSDR) and the National Institute for Occupational Safety and Health. Response: Concur. The PGVCB will develop and implement a comprehensive risk communication plan within the next six months. The Board recognizes that substantial expertise exists within DHHS at the ATSDR, and National Institute for Occupational Safety and Health (NIOSH), and will be collaborating with these agencies as well as using the expertise of nationally recognized experts in the field of risk communications. Recommendation: Because health risk information and education applies to service members who remain on active duty 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. Response: Concur. The PGVCB agrees that the risk communication must be coordinated, forward-looking, and dynamic with a commitment to long-term and sustained communication to our Gulf War veterans. DHHS, DoD and VA will work closely in sharing information. For example, the PGVCB's CWG will provide their plain language fact sheets for dissemination to veterans, family members and other interested parties on Gulf War-related topics. Copies of these materials will be sent to the Committee for review by May 1, 1997. DoD will make available the narratives on investigative activities as they become available. Recommendation: In its coordinated risk communication plan, DoD and VA should engage MCOs and veterans service organizations as intermediaries--and include personnel in leadership positions, such as senior enlisted personnel (for active duty military) 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. Response: Concur. VA and DoD are working towards development and implementation of a comprehensive risk communication plan within the next six months and with advice and assistance from ATSDR and NIOSH. VA and DoD will closely coordinate the federal government's comprehensive plan for disseminating clinical and epidemiological information to members of the affected community and other interested parties through the interagency PGVCB. The PGVCB's CWG is currently developing fact sheets on Gulf War-related issues for this purpose. The CWG and Research Working Group (RWG) will collect information from clinical investigations, epidemiological studies and basic research findings for dissemination to veterans, health-care providers, researchers, and the general public. VA and DoD view these risk communication efforts as a continuous long-term process, and will maintain the activities necessary for accomplishing these objectives as. long as the need exists. VA and DoD agree that their coordinated risk communication plan should engage veterans service organizations and include personnel in leadership positions, such as senior enlisted personnel (for active duty military) and state veterans service organization 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. VA has long recognized the importance of involving stakeholders in developing health-care programs and, along with DoD, will utilize this process for designing a comprehensive risk communication plan. VHA will continue to use its monthly liaison meeting with veterans service organizations to seek their advice and guidance, and receive feedback on clinical programs, health concerns, and communication efforts. VSO representatives serving on VA's Persian Gulf Expert Scientific Committee also serve as intermediaries in the information exchange process. In the interests of both providing Gulf War veterans with health-related information and receiving feedback on DoD health programs, DoD will engage active duty personnel, including senior enlisted personnel and officers, MCOs and VSOs, working with VA, in the process of information exchange within the next six months. Also, in response to the PAC findings, DoD established a veterans outreach program designed to communicate information about Gulf War veterans' illnesses to veterans and local communities. The Office of the Special Assistant for Gulf War Illnesses communicates with MCOs and VSOs and feedback is received. In this manner, the MCOs and VSOs can participate in the dissemination of information regarding Gulf War Illnesses and ongoing efforts in providing care incident investigation, research and education. At the same time, the MCOs and VSOs are able to communicate to the outreach section the interests and concerns of the veterans making up their organizations. One action taken by DoD was a demonstration and review of the type of chemical alarm and detectors used in the Gulf War. This demonstration, conducted on December 11, 1996, was well-received with representatives from nearly 20 organizations attending. Additionally, VSO workshops were conducted on January 30, and February 26, 1997. DoD will continue to host VSO workshops to stimulate a dialogue with veterans. Findings and Recommendations Regarding Medical and Clinical Issues Finding 2-10: DoD has not been responsive to the Committee's recommendation that prior to any deployment, DoD should undertake a thorough health evaluation, including a core set of diagnostics, of a large sample of troops to enable better postdeployment medical epidemiology along with timely postdeployment followup. Recommendation: The PGVCB 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. Response: DoD concurs with this recommendation. Deployment medical surveillance programs are composed of three major components involving pre-deployment health screening and education, deployment operational, environmental, and medical surveillance, and post-deployment health surveillance and risk communication. DoD strongly agrees with the importance of pre-deployment health assessment. The Department is developing a medical surveillance policy for deployments which specifies a uniform concept for health screening. Rather than targeting sample populations for assessment, the Department's position is that all deploying service members of specified deployments receive pre- and post-deployment screening to include standardized health screening questionnaires with medical follow-up as clinically indicated. This policy was partially implemented in Bosnia and is being fully implemented for Southwest Asia. We expect the new medical surveillance policy to be formally adopted during 1997. VA and DoD have expertise relevant to this program area. Deployment medical surveillance planning and programs are of key importance to the success of future deployments and veterans health. The planning required overlaps the responsibilities of the CWG and RWG of the PGVCB. For these reasons, a fourth, newly constituted Deployment Planning Work Group will be formed by the PGVCB to make recommendations for appropriate action, coordinate interagency activities, and monitor these important programs. Finding 2-11: FDA is moving toward soliciting public comment on alternatives to the Interim Final Rule related to permitting a waiver of informed consent for use of unapproved products during military exigencies. The Committee remains seriously concerned about the amount of time--currently exceeding six years--FDA is taking to open the process to public comment. Recommendation: 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. Response: Concur. Since receiving the Committee's Interim Report, the Food and Drug Administration (FDA) has carefully evaluated the Committee's recommendations as well as other information that has come to its attention. FDA has engaged in discussions within the agency, with the DoD, and with others on this important topic. The issues that have been raised are complex and require extensive coordination. As a result of these discussions, the FDA is preparing regulations that will solicit public comment in line with the Committee's report. This public comment will be directed toward whether the FDA should finalize the Interim Final Rule, modify it, or eliminate it completely. As part of that process, FDA is exploring the approval mechanisms that should be applied to drug and biological products that may be used in military or civilian exigencies. DoD agrees with the need for FDA to solicit timely public and expert comment on rules that permit waiver of informed consent for use of investigational products in military exigencies. DoD intends to work with FDA on ways to more expeditiously process such rules in order to ensure that we have effective countermeasures to deal with existing and new chemical and biological warfare threats. DoD agrees that, to the full extent feasible, there should be disclosure to service personnel, good record- keeping, and other procedures which enhance understanding, oversight and accountability. As one example, the long-term follow-up of individuals who receive investigational products such as pyridostigmine bromide (PB) will be enhanced by current research into the potential interaction of DEET, Permethrin and PB, which is being carried out at DoD laboratories as well as at the University of North Carolina and the University of Florida. Finding 2-12: DoD has not been responsive to the Committee's recommendation that it should routinely inform recruits and troops, through orientation and training procedures, about the possible use of investigational drugs or vaccines for chemical and biological warfare agent proposed. DoD's lack of response in this highly sensitive area contributes to the perception of many that U.S. troops were inappropriately subjected to investigational drugs or vaccines during the Gulf War. Recommendation: Given that 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. Response: Concur. Although medical personnel who participated in Operation Desert Storm were thoroughly briefed about the side effects of PB, this information did not, in most cases, get down to the individual service member. Some of the service members' concerns could have been alleviated had they known that the side effects they experienced were, in fact, attributed to the known side effects of PB, and which in most cases would go away as the service member became tolerant to those effects of PB. To address this issue, all new procurements, as well as existing stockpiles of PB, will contain appropriate labeling to inform the individual service member of potential side effects and provide warnings for use. DoD already does some orientation and training for new troops on the chemical and biological threat and on the countermeasures which may be needed. More needs to be and will be done within the next twelve months. The goal of DoD is that every service member is fully informed during orientation and training of the health risks, benefits, and proper use of all medical countermeasures, and, that when used, such countermeasures are documented and maintained as a part of the individual's health record. Given the potential for serious chemical and biological threats for future conflicts, both using countermeasures and having our service members fully informed are critical to effectively protecting them. Our troop information program and the new DoD medical surveillance policy combine to enhance soldier welfare. Given that FDA's Interim Final Rule permitting a waiver of informed consent for use of unapproved products in a military exigency is still in effect, DoD will 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. Finding 2-13: DoD has made progress in improving medical record keeping in-theater and stateside, but increased and sustained commitment from DoD's Joint Chiefs of Staff and Commanders in Chief will be necessary for current prototypes and plans to be fully and successfully integrated and implemented. Recommendation: DoD officials at the highest levels, including the Joint Chiefs of Staff and the Commanders 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 record keeping to ensure continuity. Response: Concur. DoD continues to actively develop an automated medical records system that is used during deployments and when Service members are at their home base health facilities. Major portions of that system are already being used in Bosnia. Further refinements, including the addition of an automated patient record and "meditag" record, are being made as quickly as is feasible. These new information svstems will be compatible with the records systems being used worldwide. As part of a reengineering effort under a joint agreement between DoD and VA, the two agencies are working to ensure compatibility of DoD and VA systems and to facilitate the appropriate exchange of health information. VA and DoD jointly pursue resource sharing to promote continuity of health care between the two departments and reduce costs of services by avoiding the duplication of facilities, staff and equipment. To address automation sharing issues, the Chief Information Officer (CIO) of the Veterans Health Administration (VHA) established a Directorate for VA/DoD IRM (Information Resources Management) Sharing to provide a central point for the management of interagency agreements and the implementation of hardware and software to allow for non-VA workload in VHA's automation environment. A variety of mechanisms are available to promote sharing between the agencies. The Federal Information Resources Sharing Work Group (FIRSWG) meets quarterly to discuss sharing issues concerning VA, DoD, and the Indian Health Service (IHS). DoD's Technical Integration Work Group (TIWG) encourages VA's participation in their monthly meetings to share technical policies, philosophies, and directions. Additionally, the VA-maintained Federal Health Care Resources Sharing (FHCRS) Database allows the VA/DoD Sharing Office to manage information about the more than four thousand sharing agreements between VHA and DoD facilities. The VA/DoD IRM Sharing Directorate recently initiated the VA/DoD Data Exchange Project and is working with contractors to develop a national solution to the problem of sharing data between the two departments. The project's specific emphasis is on sharing laboratory data, and success in this area will significantly benefit VA and DOD health care providers. Inputs to this project include documentation and findings from related VA, DoD and commercial efforts. The I&I Laboratory will be used to develop and test the VA/DoD Data Exchange prototype. The Pacific Medical Network (PACMEDNET) Project (now known as the Theater Medical Information Infrastructure (TMII) Project) demonstrated successful data sharing between Composite Health Care System (CHCS) and Veterans Health Information Systems Technology Architecture (VISTA) during the Cobra Gold exercises in Thailand in May 1996. The focus of the project is the use of a Transportable Computer-Based Patient Record (TCPR) to provide a comprehensive view of a patient's care history gathered from all medical facilities, DoD and VA, where a patient has received care. Following the success of the Cobra Gold demonstration, the TMII Project was expanded to include facilities outside the Pacific geographical area. The CWG of the PGVCB will actively encourage and monitor these interagency medical information systems efforts. Recommendation: The PGVCB and other appropriate Departments and Agencies should be charged to develop a protocol to implement the following recommendation, which is 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 post-deployment medical epidemiology. Medical surveillance should be standardized for a core set of tests across all services, including timely postdeployment follow-up. Response: Concur. As stated previously, DoD strongly agrees with the importance of pre- and post-deployment health assessment. The Department is developing a medical surveillance policy for deployments which specifies a uniform concept for health screening. Rather than targeting sample populations for assessment, the Department's position is that all deploying service members of specified deployments receive pre- and post-deployment screening to include standardized health screening questionnaires with medical follow-up as clinically indicated. This policy was partially implemented in Bosnia and is being fully implemented for Southwest Asia. Interim and final recommendations regarding deployment surveillance have been taken seriously by the PGVCB. DoD expects the new medical surveillance policy to be formally adopted during 1997. The newly established Deployment Surveillance Work Group will foster this activity. Finding 2-14: Clinical staff not directly involved in VA's Registry and DoD's CCEP are not well informed about the programs. Recommendation: VA and DoD should, in their educational outreach programs, specifically target staff members not directly involved in the care of Gulf War veterans. Recommendation: DoD and VA should include timely updates on the CCEP or Persian Gulf Health Registry, respectively, in their Continuing Medical Education programs. Recommendation: 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. Response: Concur. VA and DoD recognize that Gulf War-related continuing medical education (CME) is an important component of assuring quality health care for Persian Gulf veterans and their families. Within the next twelve months, VA and DoD will coordinate their departmental CME programs through the activities of the CWG. VA has used a multifaceted approach to continuing medical education combining quarterly mailings of up-to-date scientific and clinical information, interactive conference calls, national satellite video-teleconferences, and on-site CME annual conferences. Future programs will continue to incorporate updates of clinical case series (Registry and CCEP) information, clinical findings in Coalition Forces, research developments and VA program updates. In order to better address the needs of non-Persian Gulf Registry health care providers, VA has developed a print material CME self-study program which is scheduled for publication in the Spring of 1997. Copies of these materials will be made available to non-VA health care providers on request. DoD has already begun to develop an information distribution plan concerning Gulf War veterans' illnesses through the three Service Surgeons General for health care providers within the Military Health Services System. DoD and VA will work together to expand the distribution of clinical and research information regarding Persian Gulf illnesses to all of their respective clinical staff through timely updates and CME programs. Recommendation: 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. Response: Concur. DoD is reviewing the clinical staffing needs required to satisfy Gulf War veterans' health needs, including mental health, and ensuring that those staffing needs are met. With respect to future deployments, the Department has in place its CCEP, including support to all military treatment facilities, to assist with the evaluation and care of illnesses that may result from those deployments and are difficult to diagnose. VHA's Prescription for Change made quality care, customer satisfaction and timely access to health-care services for eligible veterans a primary goal. Staffing requirements will be adjusted to meet these goals and reach the minimum performance measures set for primary care and consultations at VA Medical Centers. An established annual reporting of these performance measures will accomplish the "regular review" of staffing needs recommended by the Committee. VA and DoD have programs in place to deal with the expected number of difficult-to-diagnose illnesses resulting from future deployments. The Departments are committed to provide quality health care and will take the Committee's staffing recommendation seriously. Finding 2-15: Follow-up treatment, particularly when mental health visits are involved, is problematic within both VA and DoD. Staffing constraints occasion long delays in scheduling appointments. Commanders are sometimes resistant to making sufficient time off available for active duty veterans to maintain an adequate treatment program. Recommendation: 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. Response: Concur. DoD will, within the next three months, develop an information distribution plan for Commanders concerning Gulf War veterans' illnesses. The Department will ensure that troop commanders are knowledgeable about the health needs of Gulf War veterans and are supportive when follow-up medical appointments are needed for Gulf War veterans with chronic illnesses. Finding 2-16: Reproductive health care benefits available to active duty service members and their families through the Military Health Services System are comprehensive and the standard of care. Finding 2-17: Reproductive health concerns are addressed on a case-by-case basis within DoD, and VA has extremely limited authority to treat such concerns at all. Neither DoD nor VA have widespread or systematic policies in place to address the concerns and questions of Gulf War veterans concerning reproductive health. Recommendation: The government should conduct a thorough review of its policies concerning reproductive health and continue to 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 referral--to assist veterans and their families who have reproductive concerns stemming from military service. Response: Concur. DoD provides reproductive health care for its service members and their families, and has made reproductive health concerns a higher priority for all beneficiaries in their reproductive years. Currently, the Department is putting into place performance matrices to better assess reproductive health outcomes and the associated health care and to assist in the overall management of that care. Special efforts are being made for Gulf War veterans in the areas of evaluation and care and epidemiological and other research. VHA is conducting a review of reproductive health services offered to eligible veterans as part of its Eligibility Reform activities. Reproductive health services for Persian Gulf veterans will receive serious consideration as part of this program review. Finding 2-18: DoD and VA have implemented innovative programs to help veterans cope with combat-related stress. Recommendation: The government should continue and intensify its efforts to develop stress reduction programs for all troops, with special emphasis on deployed troops. Response: Concur. DoD is currently writing a Directive which addresses the recognition and management of combat stress. When this policy directive is published, the Services will be expected to publish implementation instructions within 120 days. These instructions will focus on stress reduction programs, particularly for deployed troops. Meanwhile, special combat stress coping units have deployed to Bosnia and conduct critical incident stress debriefings for catastrophic incidents that occur in the Services. VA, DoD and DHHS will work together through the PGVCB CWG to monitor and enhance the Departmental programs. Recommendation: 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. Response: Concur. DoD, through the forthcoming Directive on Combat Stress (discussed above), will set the policy to have senior commanders and noncommissioned officers involved in stress management programs. Findings and Recommendations Regarding Research Finding 2-19: DoD and VA have not taken serious steps to encourage their principal investigators to convene and use public advisory committees for its Gulf War veterans' epidemiologic health research. Recommendation: The RWG of the PGVCB 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 RWG should consider justifying a waiver of such a committee under rare circumstances. Response: Concur. Principal Investigators (Pls) conducting large epidemiologic studies have been encouraged to establish Public Advisory Committees. Future Requests for Proposals will require Pls to incorporate Public Advisory Committees into the study design and results dissemination phases of the research. The RWG of the PGVCB agrees with the Committee recommendation that any proposals for new, large-scale Gulf War veterans' epidemiological studies of Persian Gulf veterans incorporate a Public Advisory Committee. In the December 19, 1996 teleconference of the RWG, the members unanimously agreed to make funding of future large-scale epidemiological studies contingent on the appointment of a public advisory committee. The RWG has also recommended that ongoing epidemiological studies institute Public Advisory Committees. This recommendation has been transmitted to the relevant PIs. Finding 2-20: DoD's Persian Gulf Registry of Unit Locations lacks the precision and detail necessary to be an effective tool for the investigation of exposure incidents. The effort has been no more successful than the effort to compile similar information following the Vietnam War to examine possible exposures to Agent Orange. Recommendation: The government should develop more accurate methods of recording troop locations to facilitate post-conflict health research in the future. DoD should make full use of global positioning technologies. Response: Concur. The PAC is correct in pointing out that the Persian Gulf Registry of Unit Locations database lacks the precision to serve as the basis for determining individual locations for investigation of exposure incidents. Individuals do not remain with their units throughout a conflict but rather deploy in small groupings or as individuals. Combat, Combat Service and Combat Service Support soldiers frequently are called upon to cross march or work in small teams on a temporary basis to satisfy mission requirements, e.g., fuel handlers regularly make 50 kilometer round trips to refuel front line units. Individual and team movements are too numerous to track in detail in unit level daily journals. Although it cannot be considered to be a singularly authoritative source of information, the Joint Services Environmental/Support Group database does provide decision makers with a valuable tool for the investigation of unit movements in the Gulf War. It should not and can not be used as the exclusive source for investigation of exposure incidents. The recommendation that DoD make full use of global positioning technologies is sound and this technology is being tested and incorporated throughout the Services. The efficacy of global positioning technologies to track individual and unit situational awareness will be demonstrated by the Army and other Services during the March 1997 Task Force YXI Advanced Warfighting Exercise at the National Training Center, Fort Irwin, California. Finding 2-21: Overall, the government's current research portfolio on Gulf War veteran's illnesses is appropriately weighted toward epidemiologic studies and studies on stress- related disorders that are more likely to improve our understanding of Gulf War veterans' illnesses. For the most part, the government prioritization process has worked. Finding 2-22: Research on Gulf War veteran's illnesses is treated, appropriately, as a subset of the government's broader research portfolio on the health consequences of military service. Any new research should be directed toward the principal uncertainties, which are: long-term health effects from stress; long-term health effects from low-level exposure to chemical weapons; long-term health effects from exposure to known carcinogenic and mutagenic compounds, such as mustard agent; and long-term health effects of interactions between pyridostigmine bromide and other agents. Finding 2-23: Stress is not well understood in terms of diagnoses, physiological sequelae, and effective prevention and treatment strategies; yet it is likely to be an important contributing factor to illnesses currently reported by Gulf War veterans. Additional attention to basic and applied research of stress-related disorders across the entire federally funded biomedical research portfolio would benefit DoD's and VA's capabilities to manage combat stress and its effects. Recommendation: The government should plan for further research on possible long-term health effects of low-level exposure to organophosphorus 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 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. Response: Concur. The recommendation for more research on low-level exposure to organophosphorus agents is fully supported by the PGVCB. In December 1996, the RWG has released the 1996 revision of A Working Plan for Research on Persian Gulf Veterans' Illnesses (Working Plan) first published in 1995. The RWG developed the revision as a part of its ongoing commitment to continually reevaluate the research needs for Persian Gulf veterans' illnesses. In the 1996 Working Plan, the RWG developed focused research recommendations based on the current state of information and understanding regarding the nature and potential causes of Persian Gulf veterans' illnesses. Near-term recommendations for additional research include: Follow-up of the mortality experience of Persian Gulf veterans, encompassing cause- specific mortality, at appropriate future time-points; More longitudinal follow-up studies of the health of Persian Gulf veterans, including those with illnesses that are difficult to diagnose; Critical peer-review of models used to predict exposure concentrations of environmental pollution (such as the Kuwait oil well fires) and chemical warfare agents (such as the demolition of weapons storage sites at Khamisiyah in March 1991 and aerial bombing of chemical weapons facilities during the air war); Assessment of the potential for clinical investigations of the health status of the service members in the vicinity of Khamisiyah when weapons bunker 73 and the storage pit were detonated in March 1991. If deemed possible, such clinical investigations should be carried out; Additional research on health-related issues arising from the Persian Gulf experience but with potential for more general applicability to future conflicts is also recommended, including: Investigation of the risk factors for the development of stress-related disorders including, but not limited to, post-traumatic stress disorder (PTSD); Exploration of the development of practical, sensitive, and specific biomarkers of exposure to chemical agents, including organophosphate nerve agents and vesicants such as sulfur mustard; Toxicological and, where feasible, epidemiological research on the potential for long-term health effects resulting from low-level, subclinical exposures to chemical agents, particularly organophosphate agents such as sarin; Development of a strategic plan for research into the potential long-term health consequences of exposure to low-levels of chemical warfare agents; and, If a simple, sensitive and specific, as well as economic, test for L. tropica infection becomes available, seroepidemiologic studies may be undertaken in Persian Gulf veterans. Indeed, when feasible and practical, sera of veterans should be stored in expectation of the possibility for such studies. Despite the declining importance of L. tropica as a risk factor in Persian Gulf veterans, continued research on tests for L. tropica infection is valuable for potential future deployments. In addition to a study of the feasibility of conducting epidemiological investigations of the health of veterans present at Khamisiyah in March 1991, the RWG is explicitly recommending more research on the potential toxic effects of low-level chemical warfare agents. A Broad Agency Announcement from DoD in December 1996 solicits applications to conduct the aforementioned feasibility study, and it solicits applications for toxicological research on the toxic effects of low-level chemical warfare agent exposure. DoD is asking the scientific community to help us determine what mix of human population and animal model studies will provide the best understanding of this complex issue. The RWG agrees that population studies of low-level chemical weapons exposure should consider a variety of exposed populations including U.S. pesticide workers, civilians exposed to sarin in Japan during terrorist attacks in 1994 and 1995, as well as appropriate subsets of Persian Gulf veterans who may have been exposed during the Persian Gulf War. Investigators with the VA are collaborating with Japanese scientists on studies of the health of victims of the Tokyo subway incident in 1995. The RWG also agrees that it should broaden its expertise base for consultations on the health effects of nerve agents. As part of an effort to do this, the RWG sponsored a Symposium on the Health Effects of Low-Level Exposure to Chemical Warfare Nerve Agents as a part of the Annual Meeting of the prestigious Society of Toxicology held on March 7 and 8, 1997. In the coming months the RWG will be developing a comprehensive research strategy for studies of the toxic effects of low-level exposures to chemical warfare agents. This strategy will be developed using input from appropriate government and non-government experts. Recommendation: 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. Response: Concur. VA's Environmental Epidemiology Service is studying mortality rates and cause-specific mortality among Gulf War veterans through December 1995. VA plans to support periodic updates and long-term mortality studies on deployed and non deployed Gulf era veterans. Recommendation: 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. Response: Concur. The depleted uranium health surveillance program is located at the Baltimore VAMC. VA recognizes the importance of research and health surveillance activities which will improve our knowledge of the potential health effects of human exposure to depleted uranium. VA is committed to long-term monitoring of the health of the Army veterans with retained depleted uranium fragments. Furthermore, the RWG of the PGVCB will monitor and foster the research which is ongoing within the U.S. Army and VA. Recommendation: The government should continue to collect and archive serum samples for U.S. service personnel when feasible. Response: Concur. Currently, DoD is finalizing a medical surveillance policy which will require serum collection for specified deployments. This policy will be in place during 1997. The RWG recommends that when feasible, all research studies should collect and archive serum samples. Finding 2-24: The efforts of the PGVCB's RWG would benefit from the active participation of additional representatives from other federal agencies with relevant expertise, such as the National Institutes of Health and the Agency for Toxic Substances and Disease Registry. Recommendation: The RWG should more thoroughly consult with other federal agencies with relevant expertise--such as the National Institutes of Health (NIH) (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. Response: Concur. The PGVCB will work with the other members of the RWG to obtain the active participation of appropriate expert representatives from NIH and ATSDR as well as experts from other agencies within the next three months. The RWG's current membership includes the following Departments and Agencies: Department of Veterans Affairs Office of Research and Development Office of Public Health and Environmental Hazards Department of Defense Office of the Assistant Secretary for Health Affairs Office of Defense Research and Engineering Division of Environmental and Life Sciences Department of Health and Human Services Office of Public Health and Science Centers for Disease Control and Prevention Agency for Toxic Substances and Disease Registry National Institutes of Health National Institute of Environmental Health Sciences Environmental Protection Agency National Center for Environmental Assessment These members will be supplemented by a broader membership with the expertise from a wider range of government agencies. Finding 2-25: VA's November 1996 establishment of a new Environmental Hazards Center focused on reproductive health and developmental outcomes from environmental exposures is an important step forward in developing policies for the treatment of veterans and addressing their concerns. Response: Concur. With the increasing number of women veterans, VA recognizes the growing need to understand the potential consequences of military service on reproductive health and outcomes in both men and women. VA research historically has not focused on these areas. However, in the Spring of 1996, VA issued a solicitation for a fourth Environmental Hazards Research Center focusing on potential reproductive and developmental outcomes associated with toxic exposures during military service. After a comprehensive and competitive scientific peer review, VA announced in November 1996 the award of this new Environmental Hazards Research Center to the Louisville VA Medical Center in collaboration with the University of Louisville. The new Center is an important step to enhance VA's research efforts in these important research areas. Findings and Recommendations Regarding Chemical and Biological Weapons Finding 2-26: In the face of credible evidence of the presence or release of chemical warfare agents, low-level exposure of U.S. personnel at the affected site must be presumed while efforts to develop more precise measures of exposure continue. Finding 2-27: The evidence of chemical warfare agent release at Khamisiyah is overwhelming, and low-level exposure to troops within a 50 kilometer radius should be presumed while efforts to develop more precise measures of exposure and more detailed knowledge of the demolition activities continue. Recommendation: 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 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. Response: Concur. DoD initiated a notification program in August 1996 for all service members assigned to units thought to have participated in the operation at Khamisiyah. The total number of individuals assigned to these units, and therefore included in this notification program, totaled ,168. This telephone outreach program informed service members assigned to these selected units of the incident and of the medical evaluation programs available to them through VA and DoD. During this period, the Central Intelligence Agency (CIA) attempted to model the conditions at Khamisiyah in order to estimate the dispersion of any chemical agents. Preliminary information from the model indicated exposures which could produce immediate health effects, may have occurred as far as 25 km from Khamisiyah on the date of the "pit" demolition, March 10, 1991. To cover the dates surrounding the bunker and "pit" demolitions and to build a larger margin for error, the notification program expanded to include service members attached to any unit within a 50 kilometer radius of Khamisiyah at any time on or between the dates of March 1-15, 1991. These parameters were considered conservative enough to absorb any possible variation in the geographic and temporal distribution of chemical agents modeled by the CIA. This action increased the number of veterans to be notified to 20,867. A letter was mailed notifying the involved individuals of the incident and encouraging them to participate in the medical evaluation programs available to them through the VA or DoD. In addition, a survey to gather information to better understand the events surrounding the Khamisiyah demolition and Gulf War illnesses has been mailed to all affected individuals. In order to better understand any relationship between the demolitions, potential exposure and subsequent illness, DoD and VA are sponsoring epidemiological studies and funding research. For any other sites that may be identified in the future and for any other service members who may have been exposed, similar steps will be taken with respect to notification, evaluation, care and research. Finding 2-28: Other site-specific exposures of U.S. troops to low levels of chemical warfare agents cannot be ruled out. A theater-wide time/distance analysis is insufficient to address positive detections by Fox reconnaissance vehicles and M256 kits. Recommendation: 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. Response: Concur. All confirmed positive detections that meet the standard of Recommendation 2-27 will be thoroughly investigated. DoD will examine records to encourage all veterans of units in the vicinity of these detections to enroll in the VA's Persian Gulf Health Registry or DoD's Comprehensive Clinical Evaluation program as was done for the Khamisiyah incident. The current list of possible detections should not be taken as definitive. DoD intends to apply the PAC's standard stated in Recommendation 2-27 and adopt a conservative and cautious approach with regard to possible detections. DoD's improved veterans outreach program may uncover additional information of possible detections. Each reported detection will be investigated. In order to better understand any relationship between the demolitions, potential exposure and subsequent illness, DoD and VA will sponsor appropriate epidemiological studies and research. DoD's Office of the Special Assistant has established a new case management structure to ensure a thorough and complete investigation of all events surrounding a case. Reported detections are only one piece in the analytical process surrounding a particular incident. The PGVCB will incorporate this knowledge into its activities including clinical care, research and risk communication. Finding 2-29: DoD has conducted a superficial investigation of possible chemical warfare agent exposures, that is unlikely to provide credible answers to veterans' questions. Recommendation: 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. Response: Concur in part. Consistent with the principle of independent oversight, on January 30, 1997, the President signed Executive Order 13034 extending the Presidential Advisory Committee on Gulf War Veterans' Illnesses. The Executive Order directed the Committee to provide "oversight of the ongoing investigation being conducted by the Department of Defense with the assistance, as appropriate, of other executive departments and agencies, into possible chemical or biological warfare agent exposure during the Gulf War." The Committee was also assigned the role of evaluating the Federal government's plan for and progress towards the implementation of all of the Committee's recommendations set forth in its Final Report. Finally, the Executive Order established two milestones for the Committee with respect to providing advice and recommendations related to its two principal roles: an interim status report by April 30, 1997; and a final supplemental report by October 31, 1997. DoD is fully committed to a comprehensive and credible investigation of Gulf War veterans' illnesses, and has pledged a thorough investigation and will share the results of that investigation with our veterans and the American people. DoD is committed to ensuring a successful resolution of this issue for those Gulf veterans who served as well as those who will serve in future operations. DoD is morally obligated to provide our veterans an explanation that maintains the confidence of the force and the support of parents whose sons and daughters wear the uniform of our country. The expertise and knowledge to investigate, analyze and to understand what happened resides in the Pentagon. DoD welcomes oversight and is committed to openness, communication and truthfulness. As indicated, the Office of the Special Assistant has an office for a PAC representative within our complex and will make available, as necessary, space for other oversight activities. Committee Findings and Recommendations Regarding Coordination Finding 2-30: Many issues related to post-conflict health concerns of Gulf War veterans are common to the aftermath of other military engagements. Governmental responsibility to address such concerns spans the missions of several federal departments and agencies, but it is a priority for no agency. Resolving these issues in a timely and effective manner requires interagency coordination at the highest levels of government. Recommendation: 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. Response: Concur. VA, DoD and DHHS support a Presidential Review Directive (PRD) process to address the many post-deployment health concerns highlighted by the Gulf War experience including the conduct of relevant research efforts. A draft PRD, entitled "Development of Interagency Plans to Address Health Preparedness for and Readjustment of Veterans and their Families After Future Deployments," has been drafted by the Office of Science and Technology Policy in the White House. That draft is currently circulating for final interagency clearance; it is anticipated that the clearance process will be completed by the end of March 1997. Once the directive responding to the PAC's recommendation is approved, the relevant agencies will be asked to review policies and programs and identify relevant actions that may be taken by the Federal government to better safeguard those individuals who risk their lives and well-being on deployments to defend our Nation's interests. The PRD will be specifically addressed to the following officials: the Vice President; the Secretaries of Defense, Health and Human Services, and Veterans Affairs; the Director of the Office of Management and Budget; the Assistant to the President for National Security; and the Assistant to the President for Science and Technology. If the PRD process within a given agency generates recommendations to support higher priority budgets, programs or policies, then the responsible official must include in the agency report a specific strategy on how these recommendations can be accommodated within and among the balance of the agency's budget priorities. All of the agency-specific inputs with respect to the issues identified by the PAC will be integrated into a comprehensive report by the National Sciences and Technology Council (NSTC) within one year after the issuance of the PRD. The President's Committee of Advisors on Science and Technology (PCAST) will provide input for the report review process, then take cognizance of the report for final review and approval. CHAPTER 3: NATURE OF GULF WAR VETERAN'S ILLNESSES Finding 3-1: Gulf War veterans have experienced no excess mortality from natural causes during or after the war. Gulf War veterans have experienced excess mortality from external causes such as injuries, which is consistent with the experience of veteran populations from previous conflicts. Recommendation: Research on possible causes and methods of prevention of excess mortality from external causes among veterans should receive high priority. Response: Concur. Long-term mortality follow-up studies concerning external causes are important to determine the cause of excess rates among deployed troops compared to other troops. As a result, DoD and DHHS will collaborate with VA investigators to conduct these long-term mortality studies with the goal to identify risk factors and develop appropriate interventions. The mortality study carried out by VA's Environmental Epidemiology Service found that Gulf War veterans experienced a small, but significant increased death rate as compared to non-deployed Gulf era veterans. However, this increased risk was almost entirely accounted for on the basis of external causes, such as automobile accidents. There was no difference in death rates due to medical conditions and Gulf War and non- deployed Gulf era veterans had almost half the mortality rate of the general U.S. population. This increased risk of accidental death was also seen in Vietnam veterans. VA's Environmental Epidemiology Service has already begun a feasibility study of mortality due to external causes. In addition, VA's Environmental Epidemiology Service is completing an extension of the mortality study results through December 1995. PGVCB made research in this area a priority in its recently published 1996 update of the Working Plan and is committed to continuing this work. Finding 3-2: Information from the clinical programs indicates musculoskeletal conditions and ill-defined conditions are common components of Gulf War veterans' illnesses. Recommendation: Research on Gulf War veterans' illnesses should emphasize investigating the causes and methods of prevention and treatment of musculoskeletal conditions. Response: Concur. Musculoskeletal disorders have been an important source of morbidity in all veteran populations, including the Persian Gulf War. As a part of their broader research agendas, both VA and DoD have significant resources devoted to musculoskeletal disorder research. The PGVCB agrees that research on causes and methods of prevention and treatment of musculoskeletal conditions is an important area for investigation. In funding future research, VA and DoD will look for opportunities that would increase understanding of causes, prevention and treatment of these health problems. Finding 3-3: Data from the clinical programs and epidemiologic studies indicate stress-related disorders are common components of Gulf War veterans' illnesses. Recommendation: Research on Gulf War veterans' illnesses should emphasize investigating the causes and the methods of prevention and treatment of stress-related disorders. Response: Concur. Traumatic and non-traumatic stress-related disorders may be an important contributing factor to Gulf War veterans' illnesses. Research will be solicited which investigates the possible association of traumatic and non-traumatic stress and Gulf War veterans' illnesses. We agree that research on causes and methods of prevention and treatment of stress-related disorders is an important area for investigation. In funding future research, the government will look for opportunities which would increase understanding of causes, prevention and treatment of these health problems. Finding 3-5: Stigmatization of psychosomatic illness seriously interferes with some veterans seeking care. Recommendation: Since the stigmatization of mental illness continues to be a problem for society at large, DHHS should place a priority on developing public education outreach programs that note the indissoluble association between the mind and the body. DoD and VA should make a special effort to address and target such needed educational outreach to their communities. Response: Concur. DHHS believes that there unfortunately continues to be societal- wide stigmatization of those with mental illnesses. DHHS, principally through the National Institute of Mental Health and the Substance Abuse and Mental Health Services Administration, has been working diligently for several decades to improve the awareness of all Americans about the nature of mental health. Significant strides have been made since 1990 when DHHS launched its "Decade of the Brain" theme, providing a focus not only on neuroscience, but on improving public awareness and understanding of a broad range of diseases, including psychosomatic and stress induced conditions. Much of the integrative efforts of the program are directed toward making precisely the mind-body linkage recommended in the Committee's report. To heighten awareness of the nature of mental health, improve the public's understanding of these illnesses, and bring focus to the legitimacy and treatability of psychological conditions, DHHS has taken the initial steps to commission a Surgeon General's Report on Mental Health. DHHS believes that this report, along with its ongoing educational efforts, will positively impact how society approaches issues of mental health and stress-associated problems. DHHS is fully supportive of the Committee's recommendation. DoD concurs with this recommendation and sees the release of the DoD Directive on combat stress in 1997 as a landmark directive, the first that the Department will have published on combat stress. The integration of psychological assessment into the overall physical assessment for predeployment examinations should help to destigmatize the psychophysiologic processes. In addition, a Directive on Mental Health Assessment should help to further destigmatize the use of mental health services. The publication of these directives will be further enhanced by educational outreach efforts suggested above. VA, DoD, and DHHS will incorporate this issue into the 1997 comprehensive risk communication plan. Finding 3-4: Among the subset of the Gulf War veteran population examined in the ongoing clinical and research programs, many veterans have illnesses likely to be connected to their service in the Gulf. Currently, the extent of service-connected illness in the population is unknown. Finding 3-6: It is unlikely that exposures in the Gulf War theater are responsible for the birth defects of children born to veterans. Finding 3-7: VA's examination program for spouses and children of Gulf War veterans has little or no value as a research program and offers no incentive for participation, thus raising expectations about the government's ability to respond to health care needs in veterans and their families that are impossible to meet. Recommendation: Since Congress has extended VA's examination program for spouses and children of Gulf War veterans, VA should formulate what it intends to do with the results and consider mechanisms to reimburse travel and other costs. Response: Concur in part. Section 107 of PL 103-446 did not grant VA general authority to treat or provide medical care to the spouses and children of Persian Gulf veterans. In addition, the study conducted under this section can only render data of limited scientific value, because of the inherent limitations of the required study design. More specifically, under section 107 of Public Law 103-446, VA medical evaluations can be offered to any individual who: is the spouse or child of a veteran, who (a) is listed in the Persian Gulf War Veterans Registry established under Public Law 102-585, and (b) is suffering from an illness or disorder; is suffering from, or may have suffered from, an illness or disorder (including a birth defect, miscarriage, or stillbirth) which cannot be dissociated from the veteran's service in the Southwest Asia theater of operations; and has granted VA permission to include in the Registry relevant medical data from the evaluation. Given the limited authority provided by this law, VA established a program that provides standardized medical evaluations and establishes a Registry database for health surveillance. The Department plans to analyze this database in a manner comparable to the VA Persian Gulf Registry database and the DoD CCEP database. This analysis will maximize our ability to compare the examination results of PGW veterans' spouses and children with the existing VA and DoD Persian Gulf health registries. In the absence of authority to reimburse travel costs for participants in this program, VA is exploring means to reduce this burden and increase access to the program. In January 1997, VA increased the participating examination centers to 33 sites nationwide and is encouraging VHA Network Directors to add additional sites. It should also be noted that VA's National Persian Gulf Veterans Health Survey is studying the health status of Persian Gulf veterans, their spouses and children, and VA will be providing physical examinations of veterans and family members during Phase III of this study. This randomized, controlled study will allow VA to assess the health status of Persian Gulf veterans and their families in a scientifically valid manner. Finding 3-8: The absence of baseline data regarding the reproductive history and health of military personnel makes determinations of the effects of exposures during deployments more complex and difficult. Recommendation: The government should consider methods for routinely sampling military populations regarding reproductive health so that an appropriate baseline exists for evaluating reproductive outcomes following deployment. In particular, DoD should consult with the National Center for Health Statistics and strongly consider implementing its National Survey of Family Growth and related methodologies for collecting data. Response: DoD agrees and is considering several options to establish appropriate reproductive outcome baseline data including survey instruments, adverse birth outcomes registries and other reproductive outcomes surveillance systems. As part of these deliberations over the next twelve months, DoD will be consulting with a number of outside organizations, including the National Center for Health Statistics. CHAPTER 4: SCIENTIFIC ANALYSIS OF GULF WAR RISK FACTORS Finding 4-1: Although some veterans clearly have service-connected illnesses, current scientific evidence does not support a causal link between the symptoms and illnesses reported today by Gulf War veterans and exposures while in the Gulf region to the following environmental risk factors assessed by the Committee: pesticides, chemical warfare agents, biological warfare agents, vaccines, pyridostigmine bromide, infectious diseases, depleted uranium, oil-well fires and smoke, and petroleum products. Some of these risk factors explain specific, diagnosed illness in a few Gulf War veterans, for example, leishmaniasis has been diagnosed in 32 individuals. Prudence requires further investigation of some areas of uncertainty, such as the long-term effects of low-level exposure to chemical warfare agents and the synergistic effects of exposure to pyridostigmine bromide and other risk factors. Response: Concur. Prudence dictates a continued investigation of all potential risk factors in which scientific evidence does not clearly indicate that health effects in Persian Gulf veterans are unlikely. Furthermore, the PGVCB recognizes that findings from these investigations will have relevance to the health consequences of future military deployments and to the health of the civilian community as well. Therefore, the RWG believes that a broad based research agenda is prudent, warranted, and ultimately beneficial to both military service members and civilians. Finding 4-2: A number of Gulf War risk factors -- e.g., mustard gas, aflatoxin, and certain petroleum products--are potential human carcinogens that could cause increased rates of cancer beginning decades after exposure. Recommendation: DoD and VA should perform long-term mortality studies of Gulf War veterans appropriate for investigating cancer rates in the Gulf War veteran population in the coming decades. Response: Concur. Long-term mortality follow-up studies are important and should be funded to determine cancer rates among deployed troops compared to other troops. Currently, VA's Environmental Epidemiology Service is collecting information on the mortality experience and cause-specific mortality among Gulf War veterans through December 1995. In the future, VA plans periodic updates and long-term mortality study on deployed and non-deployed Gulf era veterans. Finding 4-3: Stress is known to affect the brain, immune system, cardiovascular system, and various hormonal responses. Stress manifests in diverse ways, and is likely to be an important contributing factor to the broad range of physiological and psychological illnesses currently being reported by Gulf War veterans. Recommendation: The entire federal research portfolio should place greater emphasis on basic and applied research on the physiologic effects of stress-related disorders. Response: Concur. Stress may be an important, but not the exclusive, risk factor for Gulf War veteran's illnesses. The PGVCB agrees on the need for a greater emphasis on physiologic effects of both traumatic and nontraumatic stress in its research plan. This issue was incorporated into the December 1996 update of the Working Plan. In proceeding, the first step is to examine the research that is already being conducted, learn from that research and identify gaps in research knowledge. The PGVCB agrees about the need for a better understanding of the relationship between exposure to both traumatic and nontraumatic stress and its role in physical and psychological illnesses. In PTSD research alone, VA has invested nearly $7 million and VA investigations have received another $4.5 million from non-VA sources, such as NIH. VA and DoD are partnering in an effort to expand their resource portfolios on stress-related research through the DOD/VA cooperative research program. It will be very important to compile the ongoing and past research that is relevant to stress disorders in the format used by the PGVCB: methods, completion date, findings. This would allow a current review of areas that have and have not been addressed and an opportunity to better use current research knowledge, as well as help determine future research priorities. DoD, through the PGVCB, is actively participating in the process for finding and selecting the best scientific proposals for funding involving the health outcomes associated with stress. Two efforts are underway: proposals are being sought by a formal Request for Proposals for researchers external to the federal government as well as through via the VA intramural system.