1 UNITED STATES OF AMERICA - - - PRESIDENTIAL ADVISORY COMMITTEE ON GULF WAR VETERANS' ILLNESSES - - - PUBLIC MEETING - - - Monday, August 14, 1995 - - - The Advisory Committee met in the Congressional Room, Capital Hilton, 16th and K Street, N.W., Washington, D.C., at 9:30 a.m., Dr. Joyce Lashof, Chair, presiding. PRESENT: JOYCE LASHOF, Chair JOHN BALDESCHWIELER ARTHUR L. CAPLAN DONALD CUSTIS DAVID A. HAMBURG MARGUERITE KNOX PHILIP J. LANDRIGAN ELAINE L. LARSON ROLANDO RIOS ANDREA KIDD TAYLOR 2 DESIGNATED FEDERAL OFFICIAL: CATHERINE WOTEKI STAFF PRESENT: ROBYN NISHIMI THOMAS McDANIELS 3 C O N T E N T S PAGE Hillary Rodham Clinton 8 The Honorable Donna E. Shalala 18 The Honorable Jesse Brown 21 The Honorable John P. White 28 The Honorable Stephen C. Joseph 53 The Honorable Kenneth W. Kizer 66 Dr. Henry Falk 68 Dr. Robert H. Roswell 78 Public Comment 129 4 1 P R O C E E D I N G S 2 (9:34 a.m.) 3 MS. WOTEKI: Good morning, everyone. My 4 name is Catherine Woteki. I'm the Acting Associate 5 Director for Science at the White House's Office of 6 Science and Technology Policy. I'm also the 7 designated federal official for this very important 8 committee. 9 I would like to welcome all of the 10 committee members to this, the first meeting, and also 11 to thank them for their willingness to embark on the 12 endeavor that you will be embarking upon. 13 I'd also like to welcome all of the people 14 who are going to speak and give testimony today, 15 veterans, members of their families, and also to 16 welcome all of you who are observers. 17 In my capacity as designated federal 18 official, I also have the responsibility for opening 19 and closing all of the meetings of the committee, and 20 at this point this meeting is now open. 21 I'd like to introduce to you Dr. Joyce 22 Lashof, who is the Chair of the committee. 23 CHAIR LASHOF: Thank you very much. thank 24 you, Ms. Woteki. 25 It's my pleasure to be able to chair this 5 1 Advisory Committee, and I want to join Cathy Woteki in 2 thanking all of the members for their willingness to 3 participate in this endeavor. 4 As you know, the concerns of the illness 5 of the Gulf War veterans is a high priority for both 6 the President and the First Lady, and the appointment 7 of this committee really represents their commitment. 8 Our charge is to review all of the 9 activities that are ongoing to get to the bottom of 10 the problem, to assure that veterans are receiving 11 adequate care, and eventually to make recommendations 12 about how future such studies or problems can be dealt 13 with. 14 At this point, I would like to introduce 15 or, rather, ask each member of the Advisory Committee 16 to introduce themselves, and we'll just go around the 17 table here and just ask each of them to identify 18 themselves and just briefly their current positions. 19 Dr. Hamburg. 20 DR. HAMBURG: David Hamburg, President of 21 Carnegie Corporation of New York, which is a general 22 purpose foundation. 23 MS. WOTEKI: Could you use your 24 microphones. 25 CHAIR LASHOF: Push the button on your 6 1 mikes. 2 MS. KNOX: I'm Marguerite Knox. Can you 3 hear me now? 4 CHAIR LASHOF: Yes. 5 MS. KNOX: Okay. I'm Marguerite Knox. 6 I'm a captain in the South Carolina Army National 7 Guard. I'm also a clinical assistant nursing 8 professor at the University of South Carolina in 9 Columbia. 10 DR. LANDRIGAN: I'm Philip Landrigan. I'm 11 a physician, Chairman of the Department of Community 12 Medicine at Mt. Sinai Medical Center in New York. 13 MS. LARSON: My name is Elaine Larson. 14 I'm the dean of the School of Nursing at Georgetown 15 University here in D.C. 16 MR. RIOS: My name is Rolando Rios. I'm 17 a public interest lawyer. I'm a Vietnam veteran and 18 a disabled veteran. 19 MS. TAYLOR: I'm Andrea Kidd Taylor. I'm 20 with the United Auto Workers Health and Safety 21 Department in Detroit. I'm an industrial hygienist. 22 DR. BALDESCHWIELER: I'm John 23 Baldeschwieler. I'm a professor of chemistry at the 24 California Institute of Technology. 25 DR. CAPLAN: I'm Art Caplan. I'm 7 1 professor of bioethics at the University of 2 Pennsylvania. 3 DR. CUSTIS: I'm Dr. Don Custis, retired, 4 previous Chief Medical Director of the Veterans' 5 Administration and previously a career in the Navy. 6 CHAIR LASHOF: Thank you very much. 7 As you can see, this Advisory Committee 8 does represent many disciplines, many areas of 9 expertise, and I believe that we have a committee well 10 able to address the complexity of the problems that we 11 face. 12 At this point the committee comes 13 completely with an open mind. They've been provided 14 with a briefing book of material of previous reports, 15 but the purpose of this meeting is to initially hear 16 from the major departments that have been actively 17 involved in the work and then we will be proceeding to 18 developing a plan of action and strategies by which we 19 will undertake our work. 20 It is our goal to have a report ready for 21 the President as an interim initial report in six 22 months and a final report by the end of December of 23 1996. 24 This meeting will also enable us to hear 25 directly from veterans and others who have been 8 1 concerned for some time, who have specific statements 2 they wish to make to the Committee about the Gulf War 3 veterans' illnesses. 4 I'm obviously waiting for the signal that 5 the First Lady has arrived and will be able to 6 introduce her to you momentarily. 7 All right. As many of you know, the 8 President's commitment to the Gulf War veterans is 9 shared by the First Lady and, thus, as we embark on 10 this effort, it is my distinct pleasure and honor to 11 introduce the First Lady, Hillary Rodham Clinton. 12 (Applause.) 13 MRS. CLINTON: Thank you very much. 14 I am delighted to be here at this first 15 meeting, and on behalf of the President, I want to 16 thank the Chair and members of the President's 17 Advisory Committee on Gulf War Veterans' Illnesses for 18 your willingness to perform this public service. 19 I also want to welcome all of the 20 veterans, their friends and families, who are here to 21 talk about their personal experiences and to hear from 22 the administration officials who have been working 23 diligently on the issues raised in the President's 24 executive order creating this committee. 25 I want to start by emphasizing again how 9 1 proud we all are of our victory in the Gulf War. 2 Because of the enormous skill and bravery of American 3 troops, an end was put to Saddam Hussein's brutal and 4 illegal occupation of Kuwait. Because of the strength 5 of U.S. leadership, the international community came 6 together to stop and reverse unprovoked aggression 7 against an innocent nation. 8 This Presidential Advisory Committee is an 9 important example of the President's commitment to 10 leave no stone unturned in the administration's 11 efforts to understand Gulf War veterans' illnesses and 12 to make sure that the government is responsive to 13 veterans' needs. 14 In his announcement, the President assured 15 Gulf War veterans that we are grateful for their 16 bravery, and we are as proud of them today as all of 17 us were when they returned victorious in 1991, and 18 most important, the President made it clear that just 19 as we relied on our troops when they were sent to war, 20 we must assure them that they can rely on us now. 21 The President and I have heard from many 22 Gulf War veterans and their family members about their 23 illnesses. We have received letters from all over the 24 country and have had the privilege of meeting with 25 many veterans and family members in person. Some of 10 1 these men and women, such as Steve Robertson and Nancy 2 Kapplan, will be speaking to you this afternoon. 3 Veterans have told me about their 4 frustrating efforts to find out why they are ill and 5 how their illnesses can be treated. They have shared 6 moving stories of the devastating effects on families 7 when fathers and mothers become disabled and unable to 8 work. They have described what it was like to serve 9 their country in a desert land where oil well fires 10 turned the day to night and where sand storms made it 11 difficult to breathe. Some describe SCUD missile 12 attacks, were told of frequent use of insecticides to 13 protect them from insect-borne diseases. 14 Many Gulf War veterans have been outspoken 15 in seeking and providing information about their 16 illnesses. This Advisory Committee will determine 17 whether the experiences these veterans describe in the 18 Persian Gulf and in receiving medical care have been 19 adequately addressed or whether there are additional 20 actions that need to be taken. 21 When Secretary Jesse Brown and I met with 22 veterans at the local VA hospital here in Washington, 23 and when then Deputy Secretary of Defense John Deutsch 24 and I met with active duty soldiers at Walter Reed 25 Hospital, the stories we heard touched us deeply and 11 1 provided important information as well. I know you 2 will be working closely with veterans who will be an 3 invaluable resource in your deliberations, and I am 4 pleased you will begin by hearing directly from Gulf 5 War veterans today. 6 I have also met with the physicians, 7 nurses, and other health care professionals from the 8 VA and DOD who have worked with Gulf War veterans who 9 are ill. They, too, express great frustration about 10 the difficulties they have faced in helping some of 11 the veterans and their family members whose illnesses 12 remain undiagnosed. I know you will also work closely 13 with these dedicated men and women and learn from 14 their experiences. 15 When the men and women of the U.S. 16 military reserves and National Guard were called to 17 war in 1990, our nation knew that we could rely on 18 them, and they served our nation honorably. When we 19 look back to the euphoric parades for returning U.S. 20 troops in 1991, we can still remember a great feeling 21 of relief. We had won the war, and most Americans had 22 returned home safely, but through 1991 and 1992 there 23 was increasing concern about some of our Gulf War 24 veterans. 25 There were veterans who described symptoms 12 1 that did not respond to treatment and did not go away 2 as expected. When my husband became President and 3 learned that the numbers of veterans with chronic 4 symptoms seemed to be increasing, he took an active 5 interest in helping our veterans. 6 Because of the leadership and dedication 7 of the Departments of Veterans' Affairs, Defense, and 8 Health and Human Services, this administration has 9 already made unprecedented efforts to help Gulf War 10 veterans. For example, never before has an 11 administration moved so quickly to conduct research 12 aimed at helping returning soldiers who are ill. This 13 year alone, the three departments will spend 14 approximately $15 million to study possible 15 environmental hazards, to determine whether illnesses 16 have been transmitted to spouses and children, and to 17 develop improved treatment programs. 18 With the leadership of the VA, this 19 administration strongly supported laws to insure that 20 compensation is available to those who are disabled, 21 even if the direct causes of the illnesses stemming 22 from their military service are unknown. 23 The VA is also providing priority medical 24 care to Gulf War veterans, and both VA and the Defense 25 Department have established special treatment centers 13 1 to help veterans whose illnesses are particularly 2 difficult to diagnose. 3 The Defense Department has also recently 4 initiated a new program that will declassify documents 5 and other information about the Gulf War and make them 6 available on Internet. 7 All of these efforts will serve our 8 veterans well, and most were accomplished with 9 bipartisan support from the 103rd Congress under the 10 leadership of then Chairman of the Veterans' Affairs 11 Committees, Senator Jay Rockefeller and Representative 12 Sonny Montgomery and their committee members. 13 As President Clinton stated when he first 14 announced this Advisory Committee, he is determined to 15 do whatever it takes to respond to the concerns of the 16 Gulf War veterans. 17 This administration has already convened 18 several other panels of outside experts to examine 19 various issues pertaining to Gulf War veterans' 20 illnesses, but it came to realize that the issues are 21 so complex they require a more comprehensive, 22 sustained effort, and so the President established 23 this Advisory Committee, to be independent and 24 appropriately staffed, with the relevant experience 25 and expertise that the members represent. 14 1 This Advisory Committee is unique because, 2 as the President outlined in his executive order, you 3 will review all aspects of the federal government's 4 programs and policies that affect Gulf War illnesses, 5 telling us what we are doing right and what we should 6 be doing better. 7 The executive order specifies that you 8 will provide advice and recommendations based on your 9 review of the following: research, medical treatment, 10 risk factors from service in the Gulf War, including 11 possible environmental factors and drugs and vaccines, 12 reports of the possible detection of chemical and 13 biological weapons, coordinating efforts that have 14 been established by federal agencies, external reviews 15 by other expert panels, and outreach to veterans. 16 As you can see from that list, the mandate 17 is broad. In your efforts to review all of these 18 programs and policies, the Secretaries are pledged to 19 assist you, and you will find their doors open to you, 20 and the President has made it absolutely clear in his 21 executive order and in his announcement of this 22 Advisory Committee that when you consider your task, 23 no issue is off limits and every reasonable inquiry 24 should be pursued. 25 There are many opinions about how many 15 1 Gulf War veterans are ill, what has caused those 2 illnesses, and how they can best be treated. In 3 talking to veterans and to those who are trying to 4 serve them, it is clear that those opinions are as 5 strongly held as they are diverse, and so your task is 6 a difficult one. There are many unanswered questions, 7 and we are counting on you to make sure that this 8 administration is doing all it can to catalog relevant 9 questions and insofar as possible answer them. 10 For that reason, you were selected on the 11 basis of your wide range of expertise in medical 12 issues, scientific research, policy, and military 13 matters. The veterans on the panel will contribute 14 their invaluable perspectives from their military 15 experiences, and it is particularly important that two 16 of you served in the Gulf War. 17 You all were selected because you do not 18 have preconceived notions about the scope of the 19 problem of Gulf War illnesses or the causes and 20 treatments. 21 None of us knows what the research now 22 being conducted or called for in the future will tell 23 us. So far the research that the government has 24 conducted indicates that thousands of veterans who 25 were healthy when they left for the Gulf War are now 16 1 ill. Many veterans believe that these symptoms 2 clusters together into a Gulf War syndrome that is 3 unique. 4 Based on the research to date, however, 5 experts have concluded that there is not enough 6 evidence to call this a syndrome. This is an issue 7 that will continue to be studied as more research is 8 completed. 9 There are disagreements about the likely 10 causes and the best treatments for these symptoms. 11 These issues also will continue to be studied as more 12 research is completed. 13 The President has appointed this Advisory 14 Committee because we do not yet have the answers to 15 these important questions. These are complicated, 16 scientific questions that deserve careful scientific 17 scrutiny. 18 In his executive order, the President has 19 entrusted you to make sure that the federal government 20 is supporting appropriate research and that whenever 21 possible, the results are being used to inform 22 treatment, compensation, and priorities for future 23 research. 24 You are also entrusted to examine the wide 25 array of federal programs and policies to make sure 17 1 that they not only make sense, but also that they are 2 being administered effectively and humanely. 3 I want to leave you with the image of an 4 open door. Perhaps your most important tool as you 5 serve on this committee is your ability to be open 6 minded, to take advantage of our open door policy to 7 seek out the information you need, to evaluate all 8 existing programs and policies, and to make 9 recommendations to insure that this administration 10 will continue to be responsive and responsible to our 11 veterans. We owe them that much and more, and all of 12 us are grateful for your willingness to take on this 13 important public service. 14 Thank you very much, Madame Chairman. 15 (Applause.) 16 (Pause in proceedings.) 17 CHAIR LASHOF: Now, I think we're all very 18 appreciative of the First Lady coming to join us and 19 of her remarks. The challenge she has given us is 20 certainly a major one that we are willing to 21 undertake. 22 And now it's my pleasure to introduce -- 23 I guess we're going to take a brief break while 24 there's some logistic changes here. We have to 25 rearrange things for the first panel. 18 1 Would the audience just remain seated and 2 wait a few minutes while we move the barriers and get 3 a table up here so we can get the first panel started? 4 (Whereupon, a short recess was taken.) 5 CHAIR LASHOF: I believe we're ready to 6 proceed, and it is my pleasure to introduce the first 7 panel, the Honorable Donna Shalala, Secretary of the 8 Department of Health and Human Services; the Honorable 9 Jesse Brown, Secretary of the Department of Veterans' 10 Affairs; and the Honorable John P. White, Deputy 11 Secretary, Department of Defense. 12 You may proceed. Thank you. 13 SECRETARY SHALALA: Thank you very much. 14 I want to join my colleagues in thanking 15 all of you for your dedication and your energy and 16 your expertise for our veterans and our country. 17 Five years ago thousands of American men 18 and women left their families and their friends and 19 their jobs and their homes behind to defend freedom 20 halfway around the world. I knew dozens of them 21 because they were my students, my staff, and my 22 faculty at the University of Wisconsin. 23 While most returned safely from the 24 Persian Gulf War, the journey for some has been 25 fraught with pain and illness. Today we in the 19 1 administration are renewing our promise to these 2 Americans and to their families. We're committed to 3 finding the answers. All of us, whether we serve on 4 the panel or in the cabinet, are here because the 5 President and the First Lady are determined to get to 6 the bottom of these medical issues. 7 The President has made it very clear that 8 we must leave no stone unturned in our efforts to 9 identify what these illnesses are, how we can help the 10 victims and their families, and what we can do to 11 prevent similar diseases or illnesses from afflicting 12 veterans in the future. 13 At the Department of Health and Human 14 Services, we have taken these challenges very 15 seriously. Our involvement with this issue began when 16 we examined the environmental impact of the oil well 17 fires that occurred in the early days of the war. 18 Since that time we have supported the VA and the DOD 19 for laboratory diagnosis of leishmania infection. 20 Through the National Institutes of Health, we convened 21 a scientific panel to review the health effects of the 22 Gulf War and carefully lay out this country's research 23 needs. 24 We've conducted studies of illnesses 25 reported by some Gulf War veterans in a Pennsylvania 20 1 Air National Guard unit, and we've investigated birth 2 defects reported by others in two National Guard units 3 from Mississippi. 4 Today we are proud to be part of the 5 Inter-agency Persian Gulf Veterans' Coordinating 6 Board, and I'm pleased to say that the department 7 through the Centers for Disease Control and Prevention 8 will soon be collaborating with the Iowa Department of 9 Public Health to conduct an extensive telephone survey 10 examining the health of Iowa Gulf War veterans and 11 their families. 12 In a few minutes Dr. Henry Falk of the 13 National Center for Environmental Health at the CDC 14 will provide you with more details of our work. All 15 of these important steps are essential, but we need 16 you to help us do even more. 17 The commemoration of the 50th anniversary 18 of World War II and the dedication of the Korean War 19 memorial remind all of us of the enormous 20 contributions of our veterans in every war. Time and 21 time again they have sacrificed their lives so that 22 others could be free. Our veterans must know that 23 long after the battle has ended, long after the 24 mission has been accomplished, long after the last 25 enemy stronghold has been captured, and long after the 21 1 flag of victory has been planted that their country 2 will be there for them and their families. 3 Again, I want to thank members of the 4 committee for helping us give our veterans and their 5 families the answers and the assistance they deserve, 6 and I want to pledge our entire arsenal at the 7 Department of Health and Human Services, from the 8 Indian Health Service to FDA, to the National 9 Institutes of Health, to the Centers for Disease 10 Control, and the entire Public Health Service to this 11 effort. 12 Thank you very much. 13 CHAIR LASHOF: Thank you. 14 The Honorable Jesse Brown. 15 SECRETARY BROWN: Dr. Lashof and 16 distinguished members of the committee, colleagues 17 from other department and agencies, fellow veterans, 18 honored guests, ladies and gentlemen, I'm very happy 19 to be here today, but more importantly, I'm very happy 20 that you are here. 21 This is a very significant moment for our 22 veterans and their families. Today's meeting elevates 23 the departments' dealing with the problems of our 24 Persian Gulf veterans to the highest possible level. 25 Your work has been given top priority. 22 1 The facts you find and the recommendations 2 you make will be presented to three cabinet members 3 and through them to the President of the United 4 States. That is the kind of consideration our 5 veterans and their families need and deserve, and it 6 is a level of response that is different from another 7 time and another problem, a time when the problems 8 related to Agent Orange were allowed to manage us. 9 This President and his administration will not allow 10 history to repeat itself. 11 Over the past two years I have been 12 pleased to authorize VA compensation for several new 13 conditions presumed related to exposure to herbicides 14 in Vietnam. We who fought for these benefits never 15 again want to see our nation fail to respond to the 16 health problems of our citizen soldiers. That is why 17 we are being proactive in responding to the needs of 18 our Persian Gulf veterans who are suffering from 19 unexplained illnesses. 20 We know that the Persian Gulf War was a 21 dirty word environmentally speaking. Our warriors 22 were exposed to stressful combat conditions, smoke 23 from oil fires, a hot, dusty climate, leishmaniasis, 24 carp, toxic petroleum products, and depleted uranium. 25 It is very important that the Advisory 23 1 Committee look into all of these risk factors. This 2 includes reports of a possible detection of chemical 3 or biological agents. VA, for instance, will continue 4 to investigate whether any of our veterans are 5 suffering from health problems that might be the 6 result of exposure to these agents. 7 We are also looking into the vaccinations 8 and medications they received to protect them from 9 chemical and biological weapons, and we are concerned 10 about the long-term effects of stress that many of our 11 Persian Gulf veterans experience. 12 It is clear in retrospect that there are 13 many reasons for concern. Many veterans are reporting 14 symptoms. Some have undiagnosed illnesses, and nearly 15 all have questions. All of us have been looking for 16 answers, but the information is incomplete and some 17 answers have been illusive. 18 When I made this issue a top priority 19 nearly two and a half years ago, only one thing was 20 known for sure. Persian Gulf veterans were suffering. 21 They were suffering from fatigue, memory loss, painful 22 joints, and other physical and psychological problems. 23 That is why I committed VA to doing everything 24 possible to assist them. 25 We have initiated our own research 24 1 efforts. This will allow us to team up with other 2 agencies in order to find scientific answers. We are 3 taking a comprehensive approach to the problem. The 4 first step is evaluating immediate problems and 5 providing care. We offer a special health 6 examination, which includes a complete physical 7 examination with appropriate laboratory studies. This 8 is available to all Persian Gulf veterans concerned 9 about their health, whether they are ill or not. 10 Forty-eight thousand veterans have been examined so 11 far, and the results have been entered into our 12 Persian Gulf registry. 13 We continue to monitor the registry, to 14 identify patterns of illnesses and complaints, and 15 this centralized registry allows us to provide 16 veterans with current information on health issues, 17 research findings, and new compensation policies. 18 We have four Persian Gulf referral centers 19 where experts evaluate the cases which are difficult 20 to diagnose. They are located in Washington, D.C., 21 Houston, L.A., and Birmingham. We obtained special 22 authority to offer veterans priority access to VA care 23 for any disability that might be related to service in 24 the Gulf. 25 Following evaluation and treatment, our 25 1 second step deals with disability compensation. We 2 supported and worked hard to enact legislation to pay 3 compensation to Persian Gulf veterans with chronic 4 disabilities even though their conditions are 5 undiagnosed and have not been traced to their military 6 service. We felt veterans deserved the benefit of the 7 doubt. The Congress agreed, and the President signed 8 this law late last year. 9 In February I was proud to join President 10 Clinton in presenting the first compensation check 11 awarded under the new law to a veteran from my home 12 State of Illinois. We are contacting all Persian Gulf 13 veterans who have had a VA registry examination, and 14 we're inviting all of them to file a claim for 15 compensation benefits. 16 We are also reviewing claims for every 17 Persian Gulf veteran who had filed a claim based on 18 environmental hazards. 19 The third step is one which I believe will 20 concern this committee, the question of getting 21 definitive answers. This obviously involves research. 22 We have already begun a large and ambitious effort in 23 this direction. There are now over 30 government 24 research projects. They are looking into areas like 25 general health, environmental effects, and toxic 26 1 exposures. VA and the Defense Department have 2 contracted with the National Academy of Sciences to 3 review existing information on the problem. 4 VA is also moving forward with our own 5 research. For example, we established three special 6 research centers. They will focus on the effects of 7 exposure to environmental hazards. Our mortality 8 study will compare causes of death for Persian Gulf 9 veterans with the cause of death for veterans serving 10 in the same era who were not deployed to the Gulf. 11 Another study will survey symptoms, 12 illnesses, and exposures of 15,000 Persian Gulf 13 veterans. It will compare their experiences with 14 those of a similar size group who served at the same 15 time, but did not go to the Gulf. This study will 16 also evaluate the health status of their family 17 members. 18 The final step in our approach is getting 19 the word out. We're working very closely with our 20 nation's veterans' organizations to reach out to 21 Persian Gulf veterans and their families. Our Persian 22 Gulf Information Center operates a nationwide toll 23 free information line staffed by trained operators. 24 We also provide information through electronic 25 bulletin boards 24 hours a day, seven days a week. 27 1 The Persian Gulf newsletter goes out periodically to 2 everyone on the Persian Gulf registry, providing them 3 with the latest information on research and other 4 developments. 5 We are conducting a series of Persian Gulf 6 health days at some of our medical centers. These 7 seminars allow concerned veterans to get direct 8 answers to their questions, and finally, VA officials, 9 from myself and Deputy Secretary Gober, to facility 10 directors have participated in hundreds of media 11 interviews describing VA programs for Persian Gulf 12 veterans. 13 There are too many things going on for me 14 to describe them all today. However, I believe that 15 we are managing the problem as opposed to allowing the 16 problem to manage us. The Persian Gulf Coordinating 17 Board, which includes the VA, the Department of 18 Defense, and HHS, continues to coordinate extensive 19 work on research, clinical issues, and disability 20 compensation. 21 In the end, as the President has promised, 22 no stone will be left unturned, but I want to state in 23 the strongest terms possible something that I have 24 said on many occasions. If there is anything that we 25 are not doing that you would like to see us do, let us 28 1 hear from you. Your counsel is very important to us. 2 Our veterans have offered their very lives for the 3 nation and peace in the world. It is only right that 4 we serve them as they have served us. 5 I personally believe that the way a 6 society treats its veterans is an indication of who we 7 are as a nation, and as a result, we cannot break the 8 moral obligation the nation has to its veterans. That 9 is why, ladies and gentlemen, you have a very, very 10 important responsibility, and that is why I pledge to 11 you VA's total cooperation. Any records or 12 information you need will be made available to you. 13 All you need do is ask. We will respond fully and 14 promptly. 15 I wish you good luck and Godspeed in your 16 very important work. 17 Thank you so very much. 18 CHAIR LASHOF: Thank you very much, 19 Secretary Brown. 20 And now we will hear from the Honorable 21 John White. 22 DEPUTY SECRETARY WHITE: I thank you, 23 Madame Chairman and distinguished members of the 24 committee. 25 First, let me thank Secretary Brown and 29 1 Secretary Shalala for their leadership and hard work 2 as all three departments have been working 3 aggressively on these efforts in order to fulfill the 4 President's and Mrs. Clinton's commitment, which we of 5 course take very, very seriously. 6 I want to take the opportunity today to 7 just outline for you what we at Defense are doing. 8 First of all, as to goals our first and, of course, 9 fundamental goal is to take care of our service 10 members, and we want to do that openly because people 11 have a right to know. 12 Thirdly we want to do it openly because 13 we're looking for other information and help. We do 14 not have a corner on the knowledge in this perplexing 15 problem. Dr. Stephen Joseph, my colleague and the 16 Assistant Secretary of Defense for Health Affairs, 17 will brief you on more details in our program in the 18 next hour. Secretary Perry has asked me personally to 19 make this one of my highest priorities, and I am doing 20 so. 21 Many veterans of the Gulf War are ill, and 22 they believe it's the result of their service, and 23 that's enough for us to recognize that we must provide 24 them with the medical attention which they deserve. 25 Marcel Proust has said, "Pain we obey," and in this 30 1 case the pain of our veterans we will obey. It is the 2 least we can do for them. It's our responsibility, 3 and it's the right thing to do. 4 Now, Secretary Perry and General 5 Shalikashvili communicated to all of our service 6 members on active duty who served in the Gulf War 7 urging them to come forward and report any illnesses, 8 and as a result of that, we have a four-part program. 9 First and most importantly, to treat the 10 illnesses. This is, of course, fundamental and out 11 initial emphasis. Last June we launched a 12 comprehensive clinical evaluation program for Gulf War 13 veterans. We had some 23,000 veterans respond to the 14 Secretary's and the Chairman's encouragement, and on 15 August 1st we issued our initial report, a review of 16 10,020 such veterans and the in-depth medical exams 17 which have been provided to these veterans. So far 18 they show no evidence of unique Persian Gulf illness, 19 but rather a range of illnesses and symptoms. 20 Now, these studies are clinical. They're 21 not perfect research, nor the final word, but they're 22 certainly very valuable and necessary, and we will 23 continue to conduct the research and to provide the 24 information. 25 Secondly, we're all trying to understand 31 1 these illnesses. The three departments that are 2 represented here have funded in-depth medical research 3 into these problems. In fiscal '95, DOD alone 4 dedicated $15 million to this effort. Research is 5 being done both in the government and by 6 nongovernmental researchers. 7 Thirdly, we need to investigate the 8 illnesses, and again, all three departments are 9 aggressively working at clinical information. We have 10 established an investigative team to analyze Persian 11 Gulf classified and unclassified documents, DOD and 12 otherwise, all related to the actions and the 13 incidents that occurred, to find out where and why 14 there might be some impact on individual's health. We 15 set up an 800 number for people to provide us with any 16 incidents they know of or theories or other 17 information. 18 We are declassifying and analyzing 19 information from the war, and we're trying, based on 20 all of this, to inform people about the illnesses and 21 the possible causes and to ask for their cooperation 22 in dealing with these problems. 23 We will be making operational and 24 intelligence documents available once they are 25 declassified. On August 3rd of this year, we 32 1 announced an initial release of 3,700 pages of 2 records, including Defense intelligence and captured 3 Iraqi documents. We are now up to 4,200. We have 4 literally millions more to go, but an aggressive 5 program of declassification, and we expect to be 6 complete and have all of this information by December 7 '96. 8 We are making this information public via 9 a special program that has been established called 10 Gulf Link. It is a database that is on the Internet. 11 It's directly accessible. I've used it myself. It's 12 very easy to use. It has two fundamental parts to it. 13 First, it has the declassified documents, and it will 14 provide all of those documents, and secondly, it 15 provides the relevant medical reports, journal 16 articles, newspaper clippings, and other information 17 that we think are important in terms of getting to the 18 bottom of this problem. 19 Now, Dr. Joseph, as I said, will 20 illuminate on these initiatives in the next panel, but 21 I want to reiterate our bottom line, and that is that 22 we are doing as we have done over the past. We are 23 continuing to be aggressive in our effort to treat, to 24 investigate, to understand, and to inform people about 25 the illnesses. We are committed most of all, of 33 1 course, to caring for our veterans. 2 Let me end with a personal note, Madame 3 Chairman. My son served as a junior officer in the 4 Marine Corps and a platoon commander in the Gulf for 5 nine months. So I know from him the environment in 6 which our young people lived and the environment in 7 which they fought. So this is not an abstract issue 8 for me. This is a very real issue, a personal family 9 issue, and one in terms of my obligation to all of the 10 veterans who fought there. 11 So I can assure you, again, that we are 12 doing all that we can to get to the bottom of this 13 problem. 14 Thank you very much. 15 CHAIR LASHOF: Thank you very much. 16 Now, the panel is open for questions, and 17 any member of the Advisory Committee is free to ask 18 them. I would just hope that you will indicate to me 19 so that I can call on you as you wish. Your mike, 20 please remember that you push the button down, and 21 once you push it down it will stay on. You don't have 22 to hold it and then release it. 23 Are there questions that any of you would 24 like to address to the panel? 25 MS. KNOX: I would like to ask. You 34 1 mentioned that there was a Gulf Link on the Internet. 2 Are there computers available to veterans maybe at 3 local VAs so that they can go and access the Internet? 4 SECRETARY BROWN: That is really a very 5 interesting question. The answer I'm told is yes. 6 (Laughter.) 7 MS. TAYLOR: I have a question for the 8 last panelist. You mentioned that some of the 9 documents will be made available as soon as they're 10 cleared. How soon do you think that will take? 11 DEPUTY SECRETARY WHITE: Well, we have 12 already cleared over 4,000 documents, and they've been 13 made available. We will not wait to make them 14 available. As soon as they are cleared, we're doing 15 it in batches, but as soon as they are cleared, we 16 will put them on the Gulf Link Internet and so they 17 will be periodically regularly updated and expanded. 18 In fact, even since I made the 19 announcement a couple of weeks ago, we've added more 20 documents to that list. 21 DR. HAMBURG: I guess this goes to all 22 three or whoever who'd want to respond. We have read 23 very impressive material on ways of tackling this 24 problem. As Secretary Brown said, it has a very 25 different feel to it than the Agent Orange situation, 35 1 which I well remember. 2 Nevertheless, it's impossible for us to 3 tell from these documents, sound and thoughtful as 4 they are, what is likely to be the fate of the 5 recommendations in those documents. How can you see 6 to it that these good plans will actually be 7 implemented? 8 I assume that the Coordinating Board has 9 an important role in that, but perhaps we could hear 10 a bit more about the Coordinating Board and any other 11 mechanisms you may have in mind to actually implement 12 these thoughtful recommendations. 13 SECRETARY SHALALA: We do have a 14 coordinated process, and one of the characteristics of 15 actually the Clinton administration is our ability to 16 work across agencies effectively, and we do put 17 together and have an implementation process, David, 18 but I guess we're as concerned about our ability to 19 anticipate these issues as we are of finding 20 everything we can about the illnesses that are related 21 to participation in the Gulf War. 22 It is just not possible in future wars or 23 future activities by the American military not to 24 expect that our soldiers will go out to areas in the 25 world that are environmentally unsafe, and therefore, 36 1 it's not simply responding after the fact, but our 2 ability to anticipate in the future as veterans go to 3 other parts of the world. 4 I personally know this area of the world. 5 I served as a Peace Corps volunteer in southern Iran, 6 and I actually intimately know that area of Iraq 7 around the Persian Gulf, and I can tell you from 8 personal experience about the sand storms and the 9 burning off of oil wells and all of the other things 10 that one faces there. 11 So that I guess my point would be not only 12 do we have an inter-agency effort and an ability to 13 work across, but we need from all of you an ability to 14 anticipate for the future so that we're better 15 prepared. 16 SECRETARY BROWN: I happen to agree with 17 my colleague on her assessment, but I would like to 18 carry it a little bit farther. I'm basically 19 concerned about making sure that our veterans are not 20 adversely impacted upon as a result of having served 21 the nation and served it well. In that regard, we 22 have to look to see what impact that their service 23 actually has on their ability to get on with their 24 lives, to make that transition back from military 25 service into mainstream America. 37 1 And to make that assessment, we look at 2 three areas basically. One is what impact did it have 3 in terms of medical problems, and we are thinking 4 we're responding to that, but there are many gaps in 5 that whole process in the sense that we are kind of 6 like just responding to the symptoms because we really 7 don't understand the etiology of this process, and out 8 of that etiology once we understand it, we can shift 9 those resources from treating the symptoms to actually 10 providing a cure, and that's really where I think 11 Donna's point comes in because then we can share that 12 information with the entire world. 13 The other part of it has to do with 14 compensation benefits. We know that when you are 15 sick, it has an adverse effect on your ability to 16 provide for your family, for your wife, your children, 17 and your family members, and so we want to make sure 18 that we understand exactly what is happening so that 19 we can compensate them fairly. 20 We're moving in that direction. I don't 21 think that we are there. We made great progress last 22 year, but we must continue to look forward to what's 23 going to come out of this year's committee so that we 24 can make further improvements in the process. 25 And then finally, for those that are sick, 38 1 we need to have an understanding so that we can help 2 design a vocational rehabilitation program for our 3 veterans so that they can move on. 4 Now, once we pull all of these together 5 and have a good understanding, then, of course, we 6 will not hesitate in pushing for legislation that will 7 give us the authority to begin to actively move 8 forward on these three initiatives that have, quite 9 frankly, been time tested. We at the VA have a lot of 10 experience on it. During the history of our nation, 11 we have lost over a million men and women serving 12 their country and the country and a million and a half 13 of them have come back home suffering from all kinds 14 of problems. 15 And so what we want to do is to make sure 16 that we continue our time honored tradition of 17 responding to their needs, and with your help we will 18 do just that. 19 DEPUTY SECRETARY WHITE: May I just make 20 one comment? 21 While this is obviously a special program 22 with a great deal of intense care and scrutiny, we 23 have taken care to make sure that the people involved, 24 starting with myself and with Dr. Joseph, are people 25 who are in operating management policy positions in 39 1 the department. So this is not something off to the 2 side of what we are doing. We're deeply involved. 3 The Surgeons General of the services are deeply 4 involved so that the information gets put back into 5 the regular chains where it ought to be used in terms 6 of future issues. 7 MR. RIOS: This question is for Secretary 8 White. 9 Do we have a final count as to how many 10 troops we lost during the war, a list, and how many 11 have died since as a result of the exposure to the 12 elements? 13 DEPUTY SECRETARY WHITE: I think we have 14 a count as to the first part. I don't think we 15 probably have a count as to the second, but I would 16 have to be able to go back. 17 MR. RIOS: What was the count for the 18 first part? 19 DEPUTY SECRETARY WHITE: We'll get that 20 for you. 21 SECRETARY BROWN: I just have just one 22 additional question or response that I'd like to make 23 with respect to David's question. I think that for 24 the purpose of clarity so we do not end up getting 25 confused as we move to try to find solutions to these 40 1 very difficult problems, we should view the illnesses 2 that our Persian Gulf veterans are suffering from in 3 the same manner as we would view a gunshot wound to 4 the head or a gunshot wound to the chest or a person 5 who has lost an arm or a leg because they are just as 6 serious as that. It is just simply we do not 7 understand it, but in terms of how it interferes with 8 a person's ability to socialize and interact in our 9 society and how it interferes with their ability to 10 make an industrial adjustment, it is just as 11 devastating. 12 So if we kind of keep that focus, I think 13 it would help us get through this whole process. 14 MS. LARSON: I'd like some clarification 15 on a comment, Dr. Shalala, that you made because I 16 think it's a little different than our charge. If I 17 heard you correctly, you were suggesting that one of 18 the things this commission might do would be to look 19 at how, if and when there are future armed conflicts 20 or wars the government should anticipate an approach 21 that would provide the safeguards necessary. In other 22 words, as you said, it's safe to assume that every 23 armed conflict or war is environmentally unsafe, and 24 so how do we in the future also look at this in a 25 proactive way rather than treating each war as we have 41 1 in the past as unique and isolated? 2 And I thought that you were saying that 3 you wanted us to look at the process as well. Is that 4 correct? 5 SECRETARY SHALALA: Not completely correct. I'm 6 simply interested in the implications, in drawing out 7 the implications here. I'm not sure that your charge 8 involved anything as extensive as that, but we're as 9 interested in the implications of this because it's 10 very clear in the world we're going into in the future 11 that there are many areas of the world that raise some 12 serious issues about the environment as we send in not 13 only troops in terms of wars, but also in terms of 14 peace, and we simply need to think that through, and 15 we will learn some things out of this review, it seems 16 to me. 17 CHAIR LASHOF: I think I can respond a 18 little bit further on that. As I understand our 19 charge, and we'll be discussing that a great deal more 20 tomorrow and make sure we all clearly understand the 21 charge, and that's on the agenda, but at this point I 22 can say that we certainly hope to be able to make 23 recommendations concerning how one would follow up on 24 veterans when they come back in the future so that 25 we're not this many years down the line and now trying 42 1 to decide what epidemiology and so on, and I think 2 that is an issue we will clearly look at. 3 Whether we can anticipate everything you 4 need to do when you send troops out, that's another 5 story, but it's something we can discuss in our 6 strategies and objectives. 7 Are there other questions? Dr. Custis? 8 DR. CUSTIS: I think you've just 9 identified what we feel our responsibility to be. I 10 think it would be interesting to hear from the panel 11 what they expect from us. In other words, there was 12 a question in that regard, but in the larger context, 13 what do you expect from this committee? 14 SECRETARY SHALALA: We helped write your 15 charge. So I think that the charge as outlined both 16 by Mrs. Clinton and in the letters you got is 17 completely consistent with our conversations within 18 the administration. 19 We are enthusiastic participants in this 20 process, and we're very much involved in the decision 21 making and the thinking that went behind it. I don't 22 know whether Jesse or John want to add to that. 23 SECRETARY BROWN: Dr. Custis, I'm looking 24 for answers from you. I know that's kind of a broad 25 statement, but the bottom line is that we are now 43 1 operating in a grey area. The rules and regulations 2 that govern, for instance, VA compensation mandate us 3 to provide disability payments only in the presence of 4 injury or disease. Many of our veterans returning 5 from the Persian Gulf cannot be classified in any one 6 of those categories, neither an injury nor a disease. 7 We need to understand what that means so that we can 8 have a better feel on how to deal with it. 9 Now, we think that we've made progress, 10 but we haven't made progress based on understanding. 11 So we need to understand mechanically exactly what is 12 happening to these people, and we are looking to the 13 science to give us that information. 14 Let me give you one example based on 15 history. Many of our veterans returned from Vietnam 16 suffering from various types of problems that were 17 associated with their service. It took us 20 years 18 for the science to catch up with us, and as a result, 19 we are now, for instance, providing compensation and 20 medical care for life for disabilities that are a 21 direct result of having served in Vietnam and having 22 been exposed to Agent Orange, and these problems 23 include cloagnin, non-Hodgkins, lymphoma, soft tissue 24 sarcoma, Hodgkins disease, multiple myeloma, and 25 respiratory cancers, and the list goes on and on. 44 1 And so what we want to do, we don't want 2 to wait another 20 years to be able to respond to the 3 needs of people who have been hurt carrying out the 4 policies of the nation, and that is why we're trying 5 to be proactive. We're getting our best minds up 6 front to look at this, to see if we can figure out 7 exactly what is going on so that we can take immediate 8 action and not have to wait until thousands of people 9 have died and whole families just disintegrated 10 because we simply didn't have enough information on 11 which died. 12 MS. KNOX: Secretary Brown, I'd like you 13 to address if you could and help me to understand. I 14 know there are veterans from the Gulf War who are 15 still going today to have their exit physicals from 16 the VA system, and they're providing that for them. 17 Do the regulations state that the illness has to have 18 occurred within the first two years after the war? 19 SECRETARY BROWN: Yes. The symptoms and 20 the illness as we define it because we can't classify 21 it as a disease must have occurred within two years 22 after having left the Persian Gulf. Now, that does 23 not mean that that is the only vehicle by which we can 24 service connect, but that is part of the provision, 25 legislative provision, that was enacted last year. 45 1 CHAIR LASHOF: Let me ask Secretary White. 2 You talked about the declassification schedule. It's 3 my understanding that some of the material won't be 4 declassified until 1996. Our charge and our final 5 report is due at the end of '96. What would it take 6 to speed up the declassification? 7 DEPUTY SECRETARY WHITE: It would probably 8 take more resources than we have on it today. I don't 9 think -- and I recognize your concern -- I don't think 10 that's necessarily a problem, and I would suggest to 11 you that we look at it in three or four months, and 12 the reason I say that is that we are trying, first of 13 all, to do it as rapidly as we can. It's millions of 14 pages; secondly, to do it in so-called bulk. That is, 15 we're not sitting there going through it in a slow, 16 methodical way; thirdly, to do it intelligently in 17 terms of looking at that information that is most 18 likely to be of value to you first. 19 So I think, you know, what we end up with 20 is this huge undifferentiated documentation, and we, 21 of course, are organizing it and differentiating it in 22 ways which we hope will be responsive. So I think we 23 ought to look at this in terms of what the yield will 24 be after three or four months, and then we can see 25 whether or not we need a different strategy. 46 1 CHAIR LASHOF: Thank you very much. 2 Yes. 3 DR. LANDRIGAN: Secretary Brown, I'd like 4 to address a question to you. I concerns the matter 5 you were just discussing of the two-year limitation, 6 statute of limitations, if you will. We know in the 7 field of environmental medicine that many diseases 8 that are triggered by environmental exposures, the 9 diseases that are caused by asbestos, the cancers that 10 are caused by Agent Orange, to give just two examples 11 of many, don't develop in some cases until decades 12 have passed between exposure and onset of symptoms. 13 In the event that we conclude at the end 14 of our deliberations that certain disease entities 15 have to be considered potentially related to the 16 Persian Gulf Syndrome, but these -- Persian Gulf 17 exposures, sorry -- but these are disease that may be 18 associated with long latency, how is that going to 19 come together? 20 SECRETARY BROWN: That would be wonderful. 21 That is exactly the kind of information that I'm 22 looking for. The two-years that we used in the 23 legislation is really kind of an arbitrary number, 24 arbitrary in the fact that we used it because many of 25 the symptoms that we had been able to gather 47 1 information on developed within two years, but that 2 doesn't mean that, as you pointed out, there are other 3 conditions that will develop later on or manifest 4 themselves later on, maybe three, four, five, six, 5 seven years. 6 With respect to Agent Orange, we know that 7 the cancers are up to 30 years. So those are the 8 kinds of things that we're looking at, and also you're 9 going to be able to help us because you're going to be 10 able to assist us in bringing some peace to many of 11 our veterans and their families' minds. For instance, 12 many of them are worried about having children because 13 they're worried about birth defects. 14 So that is why the work that you are going 15 to do is so important, because it has a tremendous 16 impact on the quality of life of those who have given 17 a lot for the nation. 18 DR. CAPLAN: This is to any of the panel. 19 I was just curious that as we look in our briefing 20 books and hear your presentations about the many 21 activities that you're undertaking to establish the 22 nature of these problems, if you could share with us 23 either what you feel might be going faster, where you 24 feel things are weak looking at this massive set of 25 activities to collect information and find things out, 48 1 and what ideally you want to do if you could add 2 additional information gathering capacities. 3 In other words, where do you, having 4 started this process, see things to be, if you will, 5 perhaps not quite where they ought to be in terms of 6 gaining information? 7 SECRETARY BROWN: We have about 48,000 men 8 and women on our register. Not all of them have 9 complained about problems, but they at least have 10 expressed some concern. I want to be able to respond 11 to any of their needs. If a person is sick as a 12 result of having done what the nation asked him to do, 13 I want to provide them with lifetime medical care. I 14 want to provide them with vocational rehabilitation. 15 I want to provide them with compensation. 16 And so what I'm looking for is all of the 17 support, scientific support, that we can get so that 18 I can move forward aggressively in recommending 19 legislation that will allow us to do the right thing 20 for our veterans. 21 SECRETARY SHALALA: I think that in part 22 the panel was convened to help us answer that 23 question, and you're going to get detailed 24 presentations from the scientific leaders at the 25 Department of Health and Human Services, for example, 49 1 and what we'd like, in particular, is some of your 2 feedback about the kind of strategy we've embarked 3 upon, some of which is legislatively driven and some 4 of it is driven by our inter-agency group. So I think 5 I would hold off and see what the panel wants to say 6 to us about the approaches that we're taking up until 7 now. 8 DEPUTY SECRETARY WHITE: I would second 9 what Donna said, and also in the next hour I would 10 urge you to ask that question to the people who will 11 be here who are much more intimately involved in 12 managing these programs. 13 DR. HAMBURG: A question for Secretary 14 Shalala. You have in your department two of the most 15 respected agencies in the world with respect to health 16 matters, the CDC and the NIH, and they both will be 17 very important, both for the work of this committee 18 and also more fundamentally for dealing with the 19 problem in the long run. 20 I wonder if you'd say a word about the 21 extent to which you think it's appropriate for the CDC 22 and the NIH to be involved in this, and if so, what 23 sort of channel is the appropriate one for us to use 24 to stimulate their activity in this field. 25 SECRETARY SHALALA: You'll hear from CDC 50 1 people and see where we are in terms of NIH research 2 at the same time, David. So I think it's not only 3 appropriate; it's mandatory for both of them to be 4 involved in this effort, particularly in the case of 5 NIH in a long-range effort, because of the point that 6 was made earlier about environmental health. We're 7 going to need long-term studies to give us some 8 answers, and I think that as you take a look at what's 9 going on, we'll be interested in your suggestions, but 10 both of those agencies, plus the FDA and the Indian 11 Health Service has obviously some responsibility here, 12 as well as the entire Public Health Service, and Phil 13 Lee actually has been leading the coordinating effort 14 within the department. 15 DR. BALDESCHWIELER: The issue of Gulf War 16 illnesses, of course, has been explored by a very 17 large number of distinguished panels and advisory 18 groups already. What do you hope that we can add to 19 this already enormous existing base of review and 20 analysis that is aware of the issues where you are not 21 satisfied? 22 SECRETARY BROWN: Doctor, one of the 23 things that I think that you can do is you can bring 24 all of this information together for us. As you 25 mentioned, a lot of research has been done all across 51 1 the country in different areas. One of the things, I 2 think you can bring it together and present it in a 3 way that it really makes sense that will allow us to 4 understand it so that we can act upon it. I think 5 that's one of the things that's very, very important 6 here. 7 There is a lot of information that's out 8 there, and so we need to figure out how we can use 9 that information, and I think we can go to and I have 10 already pledged from the VA that you have carte 11 blanche to all of our records and information. 12 So if I were just to answer briefly, I 13 would just say that you can bring all of the 14 information together and present it to us in a way 15 that it makes sense so that we can make some use of 16 it. 17 SECRETARY SHALALA: I think that just 18 because something is complex and we're in grey areas 19 doesn't mean that there are not answers, and a good, 20 strong citizen review of people that understand the 21 issues and can speak clearly to the American public 22 about what we know and what we don't know and what we 23 can find out and what we may never be able to find 24 out, and that combined with our own response, which 25 thus far, I believe, under Jesse's leadership has been 52 1 very strong, along with new strategies for the future 2 is exactly what the President has requested. 3 But I think that sometimes when we say 4 that something is complex and there are no single 5 answers it sounds like we're backing off and covering 6 up an issue as opposed to sorting it out very 7 carefully and understanding that in the future all of 8 the answers may be very much like this, so that we've 9 got to be educated as we go through; that we may never 10 again be able to have a single answer to what seems 11 like a straightforward question. 12 So anything we can do to sort this out for 13 all of us, not just for the American people, but the 14 government itself is asking for a strong review. 15 CHAIR LASHOF: Any other member of the 16 committee have a question for this panel? 17 If not, I want to thank you all very much, 18 and we appreciate your coming and sharing your 19 insights with us, and we look forward to working with 20 you. 21 (Pause in proceedings.) 22 CHAIR LASHOF: If the next panel will come 23 forward and take their place at the table, we can move 24 right along. 25 I'm pleased to welcome our second panel 53 1 this morning. It is composed of the Honorable Stephen 2 Joseph, Assistant Secretary of Health Affairs, 3 Department of Defense; the Honorable Kenneth Kizer, 4 Under Secretary for Health, Department of Veterans' 5 Affairs; Dr. Henry Falk, Director of the Division of 6 Environmental Hazards and Health Effects from the 7 Centers for Disease Control; and Robert Roswell, 8 Executive Director of the Persian Gulf Veterans 9 Coordinating Board. 10 We're anxious to hear your testimony, and 11 I'm sure we'll have questions for you. So I think we 12 can proceed promptly with Dr. Joseph. 13 ASSISTANT SECRETARY JOSEPH: Thank you. 14 Dr. Lashof, members of the Advisory Committee, 15 distinguished guests, ladies and gentlemen, especially 16 those veterans of the Persian Gulf, good morning. 17 I appreciate this opportunity to describe 18 for you how the Department of Defense, in cooperation 19 with the Departments of Veterans' Affairs and HHS, is 20 responding to the President's direction. I think 21 three times this morning the phrase "leave no stone 22 unturned" has been used. It's in my text as well. 23 It's probably in Ken's. That is really our objective, 24 and that's the spirit with which we've been 25 proceeding, to leave no stone unturned. 54 1 If I may have the second slide, I think 2 these slides are also in your book. So you may not 3 need to turn around. 4 Encouraged by the President's commitment 5 and building on the department's activities to 6 register and care for returning service members, we 7 now have in place in DOD a comprehensive four-part 8 program as just outlined by Secretary White. 9 The four components are: care and 10 treatment; medical research; incident investigation; 11 and document declassification. I want to highlight 12 the details of these extensive and in some cases 13 unprecedented initiatives for you over the next few 14 minutes. 15 Above all, our bottom line really is to 16 focus and provide the best care possible for those who 17 return from the Gulf War and who today are ill. When 18 we began our clinical program for active duty Persian 19 Gulf vets and their family members, we wanted to do it 20 right. We began, therefore, by looking and focusing 21 on the individual patient, each patient's condition, 22 individually evaluating, examining, and testing to try 23 and find the source of his or her illness. 24 Patient by patient our military medical 25 teams reached diagnoses, developed treatment plans, 55 1 and for the majority helped them to recover. Some 2 patients continue to receive care, and we still have 3 others who are coming into the stream of our 4 comprehensive clinical evaluation program. 5 If I may see the next slide, we set up the 6 so-called CCEP -- and I think you may want to have 7 this in much more detail at a later briefing; I'll 8 give you the highlights now -- in the early summer of 9 1994. It was set up essentially as a clinical program 10 whose first objective was to enhance access to care 11 for our active duty Persian Gulf veterans and their 12 family members, but also to attempt to gain insight 13 into the nature of their symptoms and diagnoses. 14 We developed a very comprehensive tertiary 15 protocol, virtually identical to those used in the 16 Department of Veterans' Affairs, and through the 17 Persian Gulf's Coordinating Board, we share our 18 findings across the agencies in an attempt to have the 19 greatest clinical information available to everyone 20 who's working on this problem. 21 Right now in DOD we have over 23,000 22 active duty veterans and their family members on our 23 Persian Gulf registry. This is a registry that's 24 activated either by coming to a military treatment 25 facility or calling, accessing a 1-800 hotline number 56 1 which has been widely publicized. 2 We've had 17,000 of those 23,000 ask to be 3 evaluated through the clinical evaluation program. We 4 have completed examinations of over 13,000 people and 5 have assessed and entered into the database records 6 for 10,020 participants. That's the report that we 7 issued several weeks ago, and I believe you have that 8 in your packet in front of you. I think that's 9 probably the most extensive published medical 10 examination of this type ever performed. Included in 11 those 10,000 participants are 136 spouses and 81 12 children. 13 The 10,000 comprehensive patient 14 evaluations which we've completed clearly represents 15 the most substantial analysis of Persian Gulf related 16 clinical information that has been reported, but of 17 course, again, as John White said earlier, we 18 understand it is not perfect. It is not what one 19 would describe as a formal research study. 20 It was undertaken as a clinical 21 investigation from which we could formulate research 22 hypotheses and learn what we could. Nevertheless, 23 there are findings in these data which will assist in 24 guiding our ongoing and future research efforts. 25 Very importantly, as soon as we get the 57 1 privacy concerns, considerations worked out, we are 2 going to make this entire database available for 3 scientific researchers in the civilian sector to do 4 further analyses and studies with, and we hope to 5 accomplish that in the next few months. 6 If I may have the next slide, there are 7 three findings that I want to highlight from this 8 report. First, among the 10,000 participants, we have 9 as yet found no evidence for a single, unique illness. 10 Instead we find a range of symptoms and diagnoses 11 which are indicative of multiple causes. 12 I want to emphasize, however, that these 13 clinical evaluations are primarily designed to provide 14 care and treatment rather than definitive research 15 aimed at determining causation. Nevertheless, what we 16 find is a very broad spectrum of symptoms and 17 diagnoses. 18 Next slide. 19 Second, as we considered the clinical 20 profile of our program participants, we found that 21 severe disability does not affect large numbers of our 22 patients. The measure we used in making that 23 determination is the commonly used one of the number 24 of missed work days in the 90-day period prior to 25 initial evaluation. 58 1 Of course, in making this finding we 2 recognize that it's been four years since the Gulf War 3 and that many who may be severely ill would no longer 4 be on active duty. Even for those on active duty, 5 this finding in no way suggests that our patients are 6 not suffering. They are. 7 About seven percent of participants 8 reported missing more than a week of work due to 9 illness, and for these patients and all other CC 10 participants, we will continue to provide the care and 11 treatment they need to relieve their suffering. 12 Nevertheless, the data stand as they are. 13 If I may have the next slide, the third 14 finding, multiplicity of diagnosis, a large percentage 15 without missed work days, and the third finding I want 16 to emphasis is that many of these Gulf War veterans 17 have multiple and chronic symptoms. For example, 18 approximately one third to one half report symptoms 19 such as fatigue, joint pain, headaches, and memory 20 loss. 21 If I may have the next slide, here you see 22 a comparison of those symptoms in our CCEP population 23 with the three large community based studies that we 24 could find in the literature. Although these symptoms 25 are also common among the general population, the 59 1 frequency of some of the symptoms for our Gulf War 2 veterans differs when compared to other studies of 3 U.S. out-patient populations. In some cases, the 4 frequency is greater while in other categories, it is 5 less. 6 We made comparisons with several published 7 studies in order to provide a general context for 8 preliminary interpretation of our CCEP findings. Of 9 course, the groups in these other studies are not 10 strictly comparable to CCEP patients who tend to be 11 younger and mostly male. In fact, there is no genuine 12 comparison group that one can use. 13 Still there are useful insights to be 14 drawn in the comparisons. These are all self-selected 15 clinic populations. 16 Our formal research efforts, which I'll 17 discuss in a few moments, include appropriate control 18 or comparison groups. Generally and for preliminary 19 descriptive purposes, we found the pattern though not 20 necessarily the frequency of symptoms of our CCEP 21 participants to be quite similar to patients seeking 22 primary care in community-based studies. 23 Next slide. 24 Among our findings has emerged an 25 important perspective that I would like to call to the 60 1 attention of the committee. As you look into the 2 issue of Persian Gulf illnesses, keep in mind the 3 differentiation between disease diagnosis and symptom 4 diagnosis. As I just mentioned, some of our patients 5 have presented with a number of symptom clusters that 6 do not fit neatly into a defined category or into a 7 standard diagnostic classification scheme. This 8 situation reflects a limitation in medicine's ability 9 to exactly define each set of symptoms, a situation 10 that is also very common in civilian populations. 11 We will continue to conduct the intensive 12 CCEP evaluations for those remaining on the registry 13 and those who continue to sign up. Additionally, 14 we've established a specialize care center in 15 Washington, D.C., designed to offer the full array of 16 special evaluations, and we will open a similar center 17 in San Antonio if it's needed. 18 Next slide, please. 19 Let me say a word now about medical 20 research. With the VA and HHS, we have a coordinated 21 and intensive scientific research program underway to 22 assess the spectrum of health consequences of service 23 while deployed to the Persian Gulf. These research 24 efforts involve epidemiologic studies, analysis of 25 hospitalizations, review of pregnancy outcomes, 61 1 assessment of current health status, descriptions of 2 symptomatology, and determining the risk of potential 3 environmental exposures. 4 Many of these first truly epidemiologic 5 studies will be coming off line, beginning to produce 6 data, towards the end of this calendar year. 7 If I may have the next slide, for fiscal 8 '95, the DOD had dedicated $12 million for medical 9 research focused on Persian Gulf health issues. 10 Ongoing internal Defense research efforts include a 11 series of epidemiologic studies, studies of infectious 12 and parasitic disease, and analyses of pyridostigmine 13 bromide. 14 Also in response to some of the comments 15 that were made particularly by Secretary Shalala and 16 the panel, we have begun and actually are fairly far 17 along in making changes in our pre-deployment and 18 post-deployment health assessments, preventive 19 medicine, epidemiology teams on the ground during 20 deployment, information and education furnished to the 21 individual soldier, et cetera, as a way to try to get 22 ahead of the current problem and thinking about the 23 future. 24 This perhaps is also a point in which I 25 might give you the numbers I think that Dr. Landrigan 62 1 asked for -- I'm sorry -- that were asked for earlier, 2 the numbers of deaths actually in the Gulf. Battle 3 deaths were 148, and what we call DNBI, disease non- 4 battle injuries, that is, other deaths not directly 5 the result of armed conflict, were 145. So that adds 6 in my math to 293. 7 Next slide. 8 Just recently with the Department of 9 Veterans' Affairs, we announced the availability of $5 10 million for nongovernment, independent research 11 projects, and we are seeking additional proposals from 12 both the public and private sectors for other Persian 13 Gulf health research. 14 The close coordination among our 15 departments serves to foster cooperation, avoid 16 duplication of effort, and insure effective approaches 17 in our research projects. I think my answer to Art 18 Caplan's question of what could we do if we could do 19 more than we're doing it would be both to get others 20 to understand the time that it takes actually to 21 receive data out of the kind of research projects that 22 give you definitive answers. You don't do double 23 blind, prospective, clinical trials, and you don't do 24 epidemiologic studies and have answers in three or 25 four months. I think we're about at the horizon of 63 1 starting to see some of those bear fruit. 2 Next slide. 3 The third component of the DOD'S Persian 4 Gulf illnesses program expands our previous efforts to 5 identify all information pertaining to the health 6 problems experienced by veterans of the Persian Gulf 7 War and their families. In March of this year, the 8 DOD created an investigation team dedicated to 9 tracking down and analyzing all reasonable links 10 between service in the Persian Gulf and possible 11 illnesses related to that service. 12 This team is charged with aggressively 13 investigating all reported incidents, anecdotes, 14 theories, and documentation that could shed light on 15 possible causes of the illnesses being experienced by 16 our Gulf War veterans. 17 We've set up another hotline which was on 18 my first slide. We have the one hotline for clinical 19 registration, if you want to come through the medical 20 examination process, and another if you have a theory 21 or an incident to report that we can then follow down. 22 That, of course, is closely linked with 23 the declassification effort, and the investigation 24 team will have 12 members, mostly health 25 professionals, but also include representatives from 64 1 the intelligence, special investigations, and 2 operational community. They have begun work. 3 My next slide lists some things about the 4 fourth component, the declassification effort that 5 Secretary White referred to. You can see that the 6 investigative team and the declass. effort need to be 7 and are intimately linked together. 8 As we review and declassify the 9 documentation, we are making it available on the 10 Internet. The home page, which is called Gulf Link, 11 is up now to around 4,000 pages. 12 I think it's important for you to think 13 about as you start your work what this information 14 looks like. This is buckets and baskets and boxes of 15 everything from after action reports to hospital 16 records to unit reports scrawled on pieces of paper, 17 in the form of electronically transmitted messages. 18 It's a mass of information that is classified during 19 wartime and quite complex to sort out and sift 20 through. 21 As John White said, we're attempting to do 22 it in bulk as rapidly as possible, and going where the 23 money is first, in a sense, looking for documents that 24 might bear on medical information. This is an 25 enormous task, but just as with the clinical 65 1 examination database, we are going to make this fully 2 available and open to the public. 3 I believe that our four-part program, in 4 coordination with the VA and HHS, strongly supports 5 the spirit and intent of the President's commitment to 6 all veterans of the Persian Gulf War. These programs 7 hold the promise of providing all of us with a 8 comprehensive assessment of the health consequences of 9 Persian Gulf service, and certainly will contribute to 10 our ability to protect the health of military 11 personnel during future deployments. 12 Keeping America's armed forces healthy is 13 the very core mission of military medicine. I've seen 14 first hand the compassion and caring of our military 15 physicians and nurses, and I hope that among the 16 things you do as a committee will be to visit and see 17 some of the people who are doing the work in the VA 18 and in DOD, the docs and nurses and other health 19 professionals who are caring for the patients. 20 Thank you for the opportunity to speak 21 this morning. We in Defense welcome the thoughts and 22 ideas of this presidential commission, and stand ready 23 to assist in whatever way we can. 24 Let me repeat Secretary Brown's offer. 25 Anything you want, all you need to do is ask for it. 66 1 We will put it together and see that you get it. 2 Thank you. 3 CHAIR LASHOF: Thank you very much, Dr. 4 Joseph. 5 Dr. Kizer. 6 UNDER SECRETARY KIZER: Dr. Lashof, 7 distinguished members of the committee, I'm pleased to 8 be here this morning to make a very brief opening 9 comment and hopefully to respond to your questions and 10 engage in some dialogue as we go along. 11 You've heard a number of statements this 12 morning and many others are scheduled for over the 13 course of the day, including some from my staff. Many 14 of the points that I might normally make in this 15 setting have already been made, and I'm not going to 16 repeat all of those things here. 17 Indeed, I'm going to depart from tradition 18 and make this opening statement very brief. I would 19 just reaffirm that our four-pronged effort to deal 20 with the Persian Gulf War veterans' illnesses was 21 described by Secretary Brown earlier. This approach 22 includes providing compassionate and high quality 23 medical care, carrying out necessary research to fill 24 in some of the answers that we don't have at this 25 time, carrying out public as well as caregiver 67 1 outreach and education, and providing compensation 2 benefits. 3 I provided in your briefing booklets and 4 in my written statement additional details about some 5 of the specific activities in this regard, both about 6 the registry program, our clinical protocols, and a 7 number of other things, and I'm not going to repeat 8 all of that here. 9 Indeed, having sat on your side of the 10 table on other occasions and recognizing that this is 11 the first meeting of the committee, and mindful of 12 having time for discussion and the fact that there are 13 two other members of the panel to make comments, as I 14 say, I'm going to make this statement very brief. 15 Let me just reaffirm what Secretary Brown 16 has already said, that it is the VA's intent to 17 respond to the problem of our Persian Gulf War 18 veterans in a proactive and progressive and productive 19 manner, and when other panel members have given their 20 opening statements this morning, I'll be happy to 21 answer your questions, and as I said at the outset, 22 engage in some dialogue. 23 Thank you. 24 CHAIR LASHOF: Thank you very much, Dr. 25 Kizer. 68 1 I did neglect to state that obviously 2 we'll go through all members of the panel presenting 3 and then have an open period for discussion back and 4 forth. 5 Dr. Falk, would you proceed? 6 DR. FALK: Thank you very much. I 7 appreciate the opportunity to be here this morning to 8 meet with the committee, to review our efforts at CDC, 9 and those of Department of Health and Human Services 10 in evaluating the health status of Persian Gulf War 11 veterans. 12 The health of our military personnel and 13 veterans is an important issue with HHS and with this 14 administration, as demonstrated by our many responses 15 to the veterans' concerns, including the establishment 16 of this presidential committee. As you may know, CDC 17 has a long history of involvement in veterans' issues, 18 dating back to the formation of CDC as a public health 19 agency. 20 In fact, CDC evolved from an agency 21 established during World War II to help control 22 malaria among soldiers training in the southern United 23 States. 24 Although CDC has no clinical 25 responsibilities defined within its mission, support 69 1 of the clinical mission of the Departments of Defense 2 and Veterans' Affairs, particularly through the 3 provision of laboratory services, an important 4 resource provided by both CDC and the NIH. For 5 Persian Gulf veterans, this support is focused on our 6 testing for evidence of leishmania infection. 7 From December of '91 through February '95, 8 over 1,600 serum specimens from persons who served in 9 the Persian Gulf region were referred to CDC for 10 testing for evidence of antibodies to the parasite 11 that causes leishmaniasis. We also cultured bone 12 marrow, liver, spleen, and skin specimens. 13 The support of clinical services also 14 includes communication and education activities. 15 After military personnel returned from Operation 16 Desert Storm, CDC published an article in the February 17 '92 issue of the morbidity and mortality weekly report 18 that described cases of leishmaniasis identified in 19 persons who had served in the Persian Gulf region. 20 In addition, CDC staff have worked with 21 staff of the Walter Reed Army Medical Center and 22 others to distribute information to medical, public 23 health, and lay communities about the risk of 24 leishmaniasis in persons who have traveled to the 25 Middle East. 70 1 The preponderance of current knowledge 2 about types of illness among Persian Gulf War veterans 3 has come from registries established by the DOD and VA 4 that you have heard considerably about this morning. 5 They were designed primarily to provide clinical 6 evaluation and treatment for veterans with health 7 concerns. 8 However, a number of other studies have 9 been complete or are underway that should provide 10 critically needed information. HHS, along with DOD 11 and VA, is responsible for the conduct of some of 12 these epidemiologic studies. 13 Our initial involvement with the impact of 14 the Gulf War began in response to concerns about the 15 health impact of exposures to smoke from the burning 16 oil wells. More than 600 oil wells were set on file 17 or damaged throughout Kuwait in February of '91. In 18 response to a request from the Department of State 19 regarding concerns about the health impact of the 20 burning oil fields, the Public Health Service issued 21 a preliminary health advisory in March of '91 22 describing the emissions from the fires, and beginning 23 in April '91, CDC participated with EPA, DOD, the 24 Agency for Toxic Substances and Disease Registry in 25 HHS, and NOAA, the National Oceanic and Atmospheric 71 1 Administration, in the design of surveillance and 2 research projects to assess potential health effects 3 of the oil well fires. 4 These projects included the initiation of 5 a health alert system and the initiation of disease 6 surveillance in selected emergency rooms in Kuwait 7 City. This provided information on the quality of air 8 during 1991 in Kuwait City and areas nearby. It 9 looked at pollutants, in particular TSPs, which were 10 elevated in Kuwait City. Monitors in Kuwait City were 11 approximately ten kilometers from the file, from the 12 site of the fires. Pollutants were carried upwards to 13 high altitudes and dispersed so that the other 14 criteria pollutants were not elevated for most of the 15 people in the region. 16 In a study of oil well firefighters, 17 elevated levels of volatile organic compounds, VOCs, 18 were found in their blood. These chemicals are known 19 to be quickly excreted by the body. Among non- 20 firefighting personnel, VOC concentrations were equal 21 to or lower than levels from in a U.S. reference 22 group, suggesting that smoke from the oil well fires 23 did not pose a significant health threat to 24 individuals working in the Kuwait area away from the 25 immediate vicinity of the fires. 72 1 Another area in which CDC has been 2 involved is in assessing birth outcomes among Persian 3 Gulf War veterans. Starting in December of '93, CDC 4 and the Mississippi Department of Health assisted the 5 VA Medical Center in Jackson, Mississippi in an 6 investigation of an apparent cluster of infant health 7 problems among children born to Persian Gulf War 8 veterans from two National Guard units in Mississippi. 9 This investigation found no increase over 10 the expected rates of birth defects or frequency of 11 premature birth and low birth weight. The frequency 12 of other health problems, such as respiratory 13 infections, gastroenteritis, and skin diseases among 14 children born to these veterans also did not appear to 15 be elevated. 16 However, due to the small number of births 17 investigated, this study was not able to examine 18 individual categories of birth defects. In addition, 19 this study was not able to account for confounding by 20 the many well known factors that can increase the risk 21 for conceiving and giving birth to a baby with a 22 congenital malformation. 23 In December of '94, CDC was requested to 24 conduct an investigation of a suspected cluster of 25 illnesses among members of an Air National Guard unit 73 1 in Pennsylvania. All of these persons had been 2 deployed to the Persian Gulf during Operations Desert 3 Shield/Desert Storm. This investigation has been 4 conducted in three phases. 5 Phase one described the clinical 6 manifestations and health concerns among a sample of 7 ill Persian Gulf War veterans served by the Lebanon 8 Veterans Affair Medical Center. The objective was to 9 evaluate and characterize the existence of illnesses 10 and search for possible risk factors. 11 Phase two was a survey of the index Air 12 National Guard unit and comparison military units to 13 document the prevalence of health problems. The 14 objectives of this phase were to determine if illness 15 rates were unusually high in the index Air National 16 Guard unit and determine if illnesses were related to 17 Persian Gulf War service. 18 In this study, we found a pattern of 19 symptom complaints similar to that found in the VA 20 Persian Gulf registry and in the DOD comprehensive 21 clinical evaluation program. The two symptoms 22 identified as most bothersome were fatigue and 23 diarrhea. No consistent abnormalities were identified 24 among the participants on standardized physical 25 examination or by review of medical records and 74 1 accompanying laboratory studies. 2 In all units surveyed in phase two, the 3 prevalence of specific chronic symptoms was 4 significantly greater among persons deployed to the 5 Persian Gulf War than among those not deployed. The 6 prevalence of five symptom categories, chronic 7 diarrhea, other gastrointestinal complaints, 8 difficulty remembering or concentrating, word finding 9 problems, and fatigue, were significantly greater 10 among deployed personnel from the index unit than 11 among deployed personnel from each of the other units. 12 Symptom prevalence among nondeployed personnel were 13 similar in all units. 14 It must be pointed out that these findings 15 are preliminary and are subject to at least two 16 limitations. The data on symptom prevalence reflects 17 self-reported information, and participation rates for 18 the four units surveyed during phase two varied 19 widely, ranging from 36 percent to 78 percent. 20 Phase three is currently underway and will 21 include a detailed case control study of risk factors 22 among ill and health Persian Gulf veterans from the 23 index unit. 24 At the request of Congress, CDC is 25 implementing a survey of Persian Gulf War veterans who 75 1 listed Iowa as their home of record. This survey, 2 being conducted in collaboration with the Iowa 3 Department of Public Health and the University of 4 Iowa, includes a detailed assessment of Persian Gulf 5 War veterans' health concerns, as well as questions 6 about the health of the veterans' family members. 7 The telephone interview will be conducted 8 with a random sample of approximately 1,500 military 9 personnel who served in the Persian Gulf theater of 10 operations and approximately 1,500 Persian Gulf era 11 military personnel who served at sites other than the 12 Persian Gulf. This survey will assess a wide variety 13 of self-reported health outcomes and exposure. 14 Several committees have been established 15 to provide scientific and public oversight for this 16 study. These include a scientific advisory committee 17 composed of distinguished scientists in the fields of 18 epidemiology, reproductive health, psychiatry, 19 environmental medicine, and infectious disease, and a 20 public advisory committee composed of affected 21 veterans and representatives from veterans' service 22 organizations. 23 Pending approval by the Office of 24 Management and Budget, we anticipate beginning data 25 collection in September and having a final report 76 1 prepared by the fall of '96. 2 In addition to these studies, CDC has been 3 an active participant in the Persian Gulf Veterans' 4 Coordinating Board. As you know, this board is co- 5 chaired by the Secretaries of Veterans' Affairs, 6 Defense, and Health and Human Services and is tasked 7 with overseeing health issues related to Persian Gulf 8 War veterans. 9 The Coordinating Board co-sponsored a 10 scientific panel convened by NIH in April of '94. The 11 purpose of the NIH technology assessment workshop was 12 to bring together an independent, nongovernmental 13 panel to review the scientific evidence regarding the 14 health effects of the Gulf War experience and to make 15 recommendations as to what future research is 16 necessary to determine the types and magnitude of the 17 health problems that are associated with military 18 service in the Persian Gulf War. 19 The committee's report was published in 20 the JAMA. The panel's recommendations have served as 21 a basis for much important research in clinical work 22 to date. 23 In addition to participating in the NIH 24 technology assessment workshop, HHS participates in 25 fostering, coordination, and communication among the 77 1 federal agencies involved in Persian Gulf research 2 through active participation on the Persian Gulf 3 Veterans' Coordinating Board. 4 Additionally, CDC staff participate on 5 Department of Veterans' Affairs Persian Gulf Expert 6 Scientific Committee, and we look forward to assisting 7 staff of this Presidential Advisory Committee. 8 HHS staff participate in the development 9 of the working plan for research on Persian Gulf 10 veterans' illnesses and endorse its general strategy. 11 All of these studies will contribute to our 12 understanding of the effects of military service in 13 the Persian Gulf theater of operations. However, most 14 of these studies are limited by their retrospective 15 nature. This was also true of previous CDC studies of 16 military personnel. 17 Baseline data on the health of military 18 personnel is often lacking, which limits the ability 19 to conduct definitive studies. A more proactive 20 approach, as has been outlined here this morning, to 21 evaluate veterans' health concerns will be of value in 22 the future. 23 VA and DOD are responsible for the bulk of 24 the work addressing the concerns of the Gulf War 25 veterans. We recognize their contribution and applaud 78 1 the work that has been done to date. HHS has been 2 called upon for discrete activities both in support of 3 the VA and DOD missions and to undertake independent 4 research. 5 HHS, working closely with VA and DOD, is 6 certainly willing to consider any appropriate role in 7 further efforts on behalf of the veterans. We believe 8 that the health of veterans is a very high priority. 9 We are taking steps toward continuing and increasing 10 our collaboration with other federal agencies that 11 deal with veterans' issues. 12 Thank you. 13 CHAIR LASHOF: Thank you very much, Dr. 14 Falk. 15 Dr. Roswell. 16 DR. ROSWELL: Dr. Lashof, committee 17 members, and honored guests, it is my privilege and 18 honor to appear before you today as you embark upon a 19 very important task that will directly impact the 20 welfare of almost 700,000 veterans of the Persian Gulf 21 War. 22 In the aftermath of that war, as veterans 23 returned home to families and loved ones, reports of 24 illnesses, some of which were not readily explained 25 began to surface. Responding to these reports, the 79 1 Departments of Veterans' Affairs, Defense, and Health 2 and Human Services each became involved in the 3 evaluation of possible causes of unexplained 4 illnesses, development of health care services to 5 treat these illnesses, and compensation programs to 6 deal with the resultant disabilities. 7 Recognizing a need to coordinate these 8 efforts, President Clinton established the Persian 9 Gulf Veterans' Coordinating Board on January 21st, 10 1994. The mission of the Coordinating Board is to 11 provide direction and insure coordination within the 12 executive branch of the federal government on all 13 health issues related to the Persian Gulf War. 14 The Coordinating Board serves as a single 15 focal point and clearinghouse for official information 16 related to the agency's independent and cooperative 17 efforts to address Persian Gulf veterans' health 18 questions. 19 The Coordinating Board has established 20 three primary objectives: 21 First, to assure all veterans have timely 22 access to a complete range of health care services 23 necessary for the diagnosis and treatment of illnesses 24 possibly related to their service in the Persian Gulf 25 War. 80 1 Second, to develop and manage a research 2 program that will result in an accurate and complete 3 understanding of the types of health problems 4 experienced by Persian Gulf veterans and the various 5 factors that may have contributed to these problems. 6 And, third, to develop clear and 7 consistent guidelines for the evaluation, description, 8 and compensation of disabilities related to Persian 9 Gulf service. 10 The Persian Gulf Veterans' Coordinating 11 Board is co-chaired by the Secretaries of Veterans' 12 Affairs, Defense, and Health and Human Services. A 13 support staff includes two physicians, one a highly 14 published investigator in the field of infectious 15 disease, the other directly involved the care and 16 evaluation of Persian Gulf veterans on a day-to-day 17 basis. 18 This support staff also includes a nurse 19 and two health services administrators and is located 20 in office space in Washington, D.C., where it assists 21 in all functions of the board, including daily 22 operations, handling requests for information, 23 coordinating responses, and disseminating relevant 24 information. 25 The Coordinating Board also provides 81 1 direct support and assistance to the activities of 2 three working groups established by the Coordinating 3 Board. These working groups include the Clinical 4 Working Group, chaired by Major General Ron Blank of 5 the Department of Defense; the Research Working Group, 6 chaired by Dr. Raymond Sphar of the Department of 7 Veterans' Affairs; and the Compensation Working Group, 8 co-chaired by Gary Hickman of the VA and Ms. Jeanne 9 Fites of Department of Defense. 10 The Clinical Working Group has been 11 responsible for the development and coordination of 12 patient registries of which you've heard about this 13 morning operated by both the VA and the Department of 14 Defense. This group also develops continuing medical 15 education materials to assist clinicians caring for 16 Persian Gulf veterans. 17 The Research Working Group provides 18 guidance and coordination of VA, DOD, and Health and 19 Human Services research activities to avoid 20 duplication, focus on high priority questions, and 21 share research findings between departments in a 22 timely manner. This group also provides periodic 23 reports to federal oversight authorities. 24 The Compensation Working Group assists in 25 the establishment of fair, clear, and consistent 82 1 guidelines for VA and DOD disability determinations 2 and compensation and also monitors the implementation 3 of new disability compensation rules and procedures 4 established by law or departmental policy. 5 Although the Persian Gulf Veterans' 6 Coordinating Board has existed for less than two 7 years, it has already accomplished several objectives 8 that have aided Persian Gulf veterans. These include 9 the establishment of clinical evaluation protocols not 10 utilized by VA and DOD that generate complementary, 11 comprehensive clinical information, the development of 12 a cohesive inter-departmental research plan, and a 13 centralized research database to catalog and 14 disseminate research findings, and an enhancement of 15 professional and lay understanding of Persian Gulf 16 health issues through the publication of scientific 17 articles, presentation at national scientific and 18 medical meetings, and a variety of public appearances. 19 Equally important has been the creation of 20 a forum for the exchange of ideas within the 21 government and for the development of inter- 22 departmental relations that have fostered greater 23 understanding and cooperation in dealing with the very 24 complex issues affecting the lives of many Americans. 25 I would like to conclude my remarks by 83 1 saying that I believe that the Persian Gulf Veterans' 2 Coordinating Board has effectively focused the 3 efforts, the talents, and the resources of three 4 executive branch departments on the common goal of 5 serving the needs of Persian Gulf veterans. 6 I would be happy to answer any questions 7 you have. Thank you. 8 CHAIR LASHOF: Thank you very much, Dr. 9 Roswell. 10 I think the panel is now open for 11 questions. I think we might just try to move around 12 the table because I'm sure everybody has got some 13 questions, and we'll take them in order. 14 Do you want to? 15 MS. TAYLOR: I have a question for Dr. 16 Joseph. It was regarding the number of illnesses of 17 persons who died from illnesses or diseases. There 18 were 145 you mentioned. Do you have the specific 19 diseases? 20 ASSISTANT SECRETARY JOSEPH: We can 21 furnish those to you. I don't have them with me. 22 Those would normally be in the normal way that DOD 23 calculates casualties everything from a person who was 24 in a vehicular accident to a person who died of 25 malaria or of pneumonia. It would be everything 84 1 except direct engagement with the enemy. 2 CHAIR LASHOF: Let me just -- 3 If I might, with much of the talk, much of 4 it correct about the environment in the gulf, the 5 DNBI, which is a measure of the health of our troops 6 and our ability to use preventive medicine and medical 7 care to keep people health and restore them to health, 8 the DNBI was the lowest in the gulf than it's been in 9 any conflict that we have been in. 10 UNDER SECRETARY KIZER: Just with regard 11 to the question on mortality, as you have probably 12 seen in your materials, we are conducting a study 13 looking at mortality of veterans from the Gulf 14 conflict compared with those who did not participate 15 in those hostilities. Preliminarily, no notable 16 differences have been found, but I would underscore 17 that those are preliminary findings at this point. 18 CHAIR LASHOF: Mr. Rios? 19 MR. RIOS: Dr. Joseph, you said 148 troops 20 were killed in actual combat while the engagement was 21 going on? 22 ASSISTANT SECRETARY JOSEPH: That's 23 correct, Mr. Rios. 24 MR. RIOS: And 145 died as a result -- of 25 the 145, what's the time period that those people died 85 1 in? Over the past year? 2 ASSISTANT SECRETARY JOSEPH: I can't give 3 you the exact time period, but those would be deaths 4 that were directly related to the deployment so that 5 while someone might have been injured -- let's take my 6 example -- while someone might have been severely 7 injured in an automobile accident but survived and 8 then died in a hospital six months later back in the 9 States, they would count in that DNBI. 10 Those numbers do not count, if I think I 11 know where you're going; those numbers do not count 12 Persian Gulf War deployed veterans or active duty who 13 died since returning from the Persian Gulf of a cause 14 that was not diagnosed in the Persian Gulf. Those 15 figures we will have from the study that Dr. Kizer 16 referred to. We are also doing a study comparing 17 active duty to deployed to the gulf and active duty of 18 the same era who did not deploy to the gulf. We'll 19 have information on comparative mortality, comparative 20 hospital experience, reproductive health issues, and 21 the rest, but those results will not be available 22 until some time towards the end of the year as early 23 results. 24 MR. RIOS: And your research shows that 25 our troops were, in fact, exposed to chemical war 86 1 agents while they were over there? 2 ASSISTANT SECRETARY JOSEPH: No. In fact, 3 the finding of every group that has looked at this, 4 beginning with the Defense Science Board, the so- 5 called Lederberg report, all the other reports that 6 have been issued, plus the results of our own 7 investigations in the department show no evidence of 8 the use of chemical or biological weapons in the gulf. 9 MR. RIOS: In other words, you found 10 absolutely no chemical war agents that were in the 11 atmosphere throughout the whole war; is that correct? 12 At no levels? Because I understand that some of these 13 troops that had devices that measured chemical war 14 agents, some of them were going on quite a bit, and is 15 it the government's position that there were no 16 chemical war agents in the atmosphere at all 17 throughout the whole war? 18 ASSISTANT SECRETARY JOSEPH: Let me 19 mention three. You're now deeply into an issue that 20 I'm sure you're going to be into for some time. There 21 were at least three sort of sets of claims or reports 22 during the gulf conflict. One was the frequent going 23 off, setting off of alarms, chemical detection alarms. 24 There were hundreds of these incidents where various 25 alarms were set off. In each one of those incidents, 87 1 a follow-up investigation failed to confirm the actual 2 presence of chemical agents. 3 In part, this is a sensitivity versus 4 specificity issue. 5 Secondly, there's a very well publicized 6 incident where an advanced scout went into a bunker in 7 the desert, came out -- the bunker was full of vats 8 and storage tanks -- came out some time later and 9 sustained a burn on his clothing and on his arm. 10 Initially that was reported as a mustard gas exposure, 11 but in that instance, as well, the chemical, 12 biological, nuclear detection officers who followed up 13 and all follow-up testing on that soldier and on the 14 clothing could not confirm exposure to a chemical 15 warfare agent. 16 And finally, there are the reports, the 17 famous Czech incidents, where a Czech, C-z-e-c-h, a 18 Czech detection team in the desert allegedly reported 19 the presence of chemical agents on the battlefield, 20 and again, those reports have not been able to have 21 been confirmed, including after visits from our people 22 visiting with the Czechs and others. 23 So the position of the department, and 24 it's based on a very thorough review of all the data 25 that we can find and the review by external bodies, 88 1 such as the Defense Science Board, is that there is no 2 evidence of the use or presence of CBW agents on the 3 battlefield. 4 MR. RIOS: I'm sorry. Now, what's the 5 explanation for these meters or devices or whatever it 6 is that the troops were carrying? Why were they going 7 off? 8 ASSISTANT SECRETARY JOSEPH: Well, these 9 devices, one, are not perfect, and (b) they are set to 10 be more sensitive than specific so that many things 11 will set off a device besides the presence of the 12 actual agents. In fact, one of the findings that has 13 been repeated in several of the independent groups and 14 our own internal studies coming out of the gulf is the 15 urgent need for more specific and reliable battlefield 16 usable chemical detection agents. 17 One would expect to have many more false 18 alarms than real. It's a little bit like the smoke 19 alarm in your house. If you broil your lamb chops a 20 little too vigorously, you'll set off the smoke alarm, 21 but you want that to happen because you don't want 22 there to have to be a fire in your house before the 23 smoke alarm goes off. 24 MR. RIOS: And did DOD ever issue any 25 report on the actual bombing sites and whether or not 89 1 any of these bombings that the United States did 2 occurred close to where there were any chemical 3 weapons or that could have -- 4 ASSISTANT SECRETARY JOSEPH: I do not 5 believe so. I don't have that information with me. 6 I'll get you what I think approximates it, but all 7 that data that has been looked at has come up with the 8 same conclusion. 9 MR. RIOS: So right now so that the panel 10 knows it's your position and the government's position 11 that there were no chemical war agents in the 12 atmosphere and that our troops were not exposed to any 13 chemical war agents? 14 ASSISTANT SECRETARY JOSEPH: That is 15 correct, Mr. Rios. 16 CHAIR LASHOF: General Larson. 17 MS. LARSON: Yes, two quick questions. 18 First to staff, I don't recall seeing a copy of the 19 JAMA article that Dr. Falk referred to, and it might 20 be useful to get copies of that. 21 MS. NISHIMI: I thought it was in there, 22 but if not, then we'll get it. 23 MS. LARSON: I just looked through. I may 24 have missed it. 25 MS. NISHIMI: Okay. 90 1 MS. LARSON: Second quick question to Drs. 2 Roswell and Joseph. I read with interest the report, 3 Dr. Joseph, on the comprehensive clinical evaluation 4 program and the reprint from the Archives of Internal 5 Medicine. Those are very useful reports for sort of, 6 if you will, generating hypotheses of disease, but the 7 real important compelling evidence will come from the 8 kind of prospective cohort study that you mentioned. 9 It seems to me we really need that 10 information, and you're saying it will -- would you 11 tell us a little bit more about the status of that 12 prospective cohort and what you're actually studying, 13 when it started, and as you mentioned, the results 14 will be available by the end of this year; is that 15 correct? 16 ASSISTANT SECRETARY JOSEPH: Well, let me 17 just take one point of issue with you. There are 18 things that that kind of prospective epidemiologic 19 study can't tell you. That study will not give us -- 20 that study will not generate the level and detail of 21 clinical information that the other studies have, but 22 the other problem is vice versa. 23 The most important set of studies for us, 24 the so-called Gray studies, are studies that are being 25 carried out by the Navy out of San Diego, and they are 91 1 this family of controlled studies that I mentioned 2 before: mortality experience, hospital experience, 3 and birth outcomes and reproductive health. 4 Those studies began a good year ago, and 5 as I said, the first preliminary data we expect to see 6 in November or December of this year. I don't think 7 that's unusual. It just takes that kind of time to do 8 these kinds of studies, and I can guarantee you that 9 no matter how interesting, provocative, or useful the 10 results of those studies will be, they will lead to 11 additional questions which then will need to be 12 studied in an even more refined matter. 13 It's a little bit like Secretary Shalala 14 was saying here. I don't want at all to give the 15 impression that we're saying this, you know, to back 16 off and sort of give ourselves cover. Well, it's very 17 complex; it takes a long time; it's hard to get 18 answers. That's not my purpose. My purpose is that 19 it does take a long time. Those things will give us 20 very important answers, but I'm not sure they will 21 give us the kind of single channel, yes/or, red 22 light/green light answers that some may be expecting. 23 Science just does not work that way. 24 MS. LARSON: I'm not suggesting that it 25 does, but I am suggesting that it's very useful to 92 1 have comparison groups which are comparable -- 2 ASSISTANT SECRETARY JOSEPH: Absolutely. 3 MS. LARSON: -- in all other aspects 4 except deployment to the gulf, and that's what we 5 don't have in the data now. 6 ASSISTANT SECRETARY JOSEPH: That's 7 correct. 8 DR. ROSWELL: The VA study that was 9 alluded to earlier will actually survey 15,000 10 randomly selected Persian Gulf veterans and compare 11 the answers they provide to answers provided by 15,000 12 randomly selected veterans of the Persian Gulf era who 13 did not serve in theater. 14 That questionnaire that will be used in 15 that process has been evolved with a great deal of 16 cooperation between the three departments and input 17 from our Scientific Advisory Committee. Right now the 18 questionnaire is pending final approval by the Office 19 of Management and Budget, a requirement in law. 20 Once that's obtained, we plan to begin 21 that survey and hope that results would be available 22 within 12 to 15 months, but understandably to 23 aggregate and evaluate that kind of detailed 24 information, it is a lengthy process, as Dr. Joseph 25 has alluded to. 93 1 ASSISTANT SECRETARY JOSEPH: If I might 2 just take another moment more to describe one other 3 study that the committee needs to know about, a 4 terribly important study, the other parameter, of 5 course, is space and time, and the so-called Army 6 geographic locator study, which should be finishing up 7 or at least have usable data early in '96, December 8 '95, January '96, will provide a map of every unit on 9 every day in the Gulf so that if and as we turn up 10 important clinical or epidemiologic information that 11 seems to cluster around particular units, not 12 individual soldiers, but particular units, we can look 13 for patterns of space and time, and that's the other 14 very important thing. It just takes a white to get 15 there. 16 CHAIR LASHOF: Dr. Landrigan. 17 DR. LANDRIGAN: You know, you must have 18 been reading my mind, Dr. Joseph, because I was just 19 going to ask a question along those lines. One of the 20 things that we've learned over the years in 21 environmental and occupational medicine is that all 22 members of a population are not equal in terms of 23 their exposure, but typically there are subsets that 24 have heavier exposure either by virtue of their job 25 classification or their geographic location or some 94 1 other factor. 2 And I wanted to talk with you for a moment 3 about your strategy and also Henry Falk at your 4 strategy in devising the epidemiologic studies. I 5 think it's all well and good, and indeed essential, 6 that you do the big, broad based studies that you're 7 doing, but it seems to me there ought to be a 8 systematic effort afoot to identify groups within the 9 larger population either by virtue of particular 10 exposures that were reported or anecdotal events of 11 disease or other intelligence that you have, and then 12 focus in on them using either clinical studies, case 13 control, or whatever methodology seems appropriate. 14 ASSISTANT SECRETARY JOSEPH: I won't go 15 back over the space, time and comparison group 16 comments that we've all just made, but one of the most 17 important findings, I think, in the CCEP 10,000 so far 18 is that those 10,000 patients are distributed over a 19 very, very large number of units in the gulf, that 20 were in the gulf, and with a few exceptions, all of 21 those, the units described, many thousands of units, 22 had only a very small number each of those who later 23 became registrants on the CCEP. 24 That, I think, is one of the strongest 25 pieces of evidence that whatever these things are we 95 1 are dealing with, we are not dealing with a single, 2 unique cause of illness over this mass population. 3 Of course, that does not tell you whether 4 or not there might be small clusters, particularly in 5 those units that seem to have a larger number of 6 individual participants than one might have imagined; 7 that there might not be some specific things going on 8 in those clusters; and so another important tool for 9 focusing these more discrete studies that you've 10 talked about is now to go back and look at those units 11 where there have been more than one or two people who 12 emerge who later turn up as patients in our program, 13 and also to take all our other clinical data and try 14 to focus it back on that unit, space, time, and 15 comparison group map. 16 DR. LANDRIGAN: I must say I'm not too 17 hung up one way or the other on the issue of a single 18 entity. It may or may not exist. I have no opinion 19 on that, but I'm thinking more in terms of different 20 subpopulations that have distinctly different 21 exposures, oil smoke here, some chemical there, 22 benzene in a third place, and I think of it more as a 23 checkerboard, I guess. 24 ASSISTANT SECRETARY JOSEPH: Both we in 25 the VA in our registry information ask self-reported 96 1 questions about exposures and so does the CDC, and Dr. 2 Falk may want to comment on that. 3 One of the problems, of course, is that 4 you're talking about memory. You're talking about 5 self-selection, and you're talking about events that 6 now are from some time in the past, and for example, 7 we have many more people on our registry self- 8 reporting exposure to various agents than could 9 possibly be the case from what we know about the way 10 either insecticides were used or pyridostigmine was 11 ingested or various vaccines were administered. 12 DR. FALK: In response to your question, 13 I agree with Dr. Joseph in terms of systematically 14 looking at all the people who are in the CCEP registry 15 and trying to find pockets of concern. In addition to 16 that, several of the things that we have done like in 17 Pennsylvania or Mississippi are studies that were 18 generated by concerns from particular units, and I 19 think that that's something we would be attentive to 20 in the future, as well. 21 UNDER SECRETARY KIZER: I would just make 22 two additional comments. When I came to the VA not 23 that many months ago one of the first things I asked 24 was about the geographic locator study. I think that 25 is going to be of great importance, particularly 97 1 insofar as being able to link that with the folks on 2 the registry, both DOD's and the VA's registry, and 3 out of that I would expect a whole number of anecdotal 4 incidents, as well as perhaps some ideas for case 5 control studies will emerge. 6 The second point I wanted to make, and it 7 goes back to a question that -- I apologize -- I don't 8 recall who asked it of the prior panel though that 9 bears on this, and that is the need at least in my 10 judgment that we work with some of our international 11 partners to look at their experience as well. There 12 were other allied forces, although not as numerous as 13 the United States, that have populations. They have 14 been perhaps slower in recognizing the problem and 15 dealing with it, but it is a potential reservoir of 16 information, both anecdotal as well as epidemiologic, 17 that we should not ignore and that we need to be 18 looking at their experience collaboratively just as we 19 look at our own. 20 DR. ROSWELL: With regard to study design, 21 I should also point out that if we look at the 700,000 22 approximate force that served in the Gulf War, we find 23 that the composition included seven percent women, 24 approximately ten percent Reserve troops, and about 25 six to seven percent National Guard. 98 1 Because each of those subsets within that 2 larger force are important components, each of those 3 areas will intentionally be over-sampled in the VA's 4 epidemiologic study to make sure that we achieve 5 statistical significance for each of those 6 populations, as well. 7 All of these are factors. The geographic 8 factors as well as the force composition are factors 9 that have gone into the experimental design that has 10 become a part of the inter-agency research plan. 11 MS. KNOX: Can you give us some insight 12 into why the State of Iowa was chosen for the study 13 that you're going to do? Is it random? 14 DR. FALK: I think we were very directly 15 asked about doing it in the State of Iowa. You know, 16 I think that there will be some differences between 17 the CDC study and the VA study in the sense that as a 18 telephone interview survey, we can do interviews 19 perhaps in more detail in certain aspects. So I think 20 we can take advantage of that wherever we do that 21 study to do it in more detail. 22 So I think, yes, it could conceivably have 23 been done someplace else, but we were requested to do 24 this in Iowa, and I think we can do the study well in 25 Iowa with active participation from the Health 99 1 Department there and the University of Iowa, and 2 there's a very good group working on this together 3 there. 4 So I think it will actually work well 5 there, and it's an effort to do something a bit more 6 intensive in one particular place. 7 DR. ROSWELL: I could probably also shed 8 a little bit of light. Senator Tom Harkin actually 9 conducted a field hearing in Iowa where this and other 10 concerns were discussed, and as a direct result of 11 that field hearing, actually Dr. Satcher (phonetic), 12 Director of the Center for Disease Control and 13 Prevention, made the commitment to initiate the study. 14 MS. KNOX: And what's the sample size of 15 that study going to be? 16 DR. ROSWELL: There'll be -- right now it 17 -- do you want to answer? 18 DR. FALK: Oh, it's anticipated that it 19 will be probably a little over 3,000, 1,500 deployed 20 to the Persian Gulf, 1,500 not deployed to the Persian 21 Gulf. 22 MS. KNOX: The second question I have is 23 about the external research. Is there funding 24 available from NIH for external researchers? 25 DR. ROSWELL: Of course, funding is 100 1 available on a competitive basis through NIH for any 2 researcher. I'm not aware of any special earmarked 3 money available through NIH. However, earlier this 4 year the Department of Defense announced the 5 availability of over $5 million that would be 6 available to any investigator in a call for proposals 7 that would address specific areas of the experience 8 associated with the Persian Gulf health concerns. 9 MS. KNOX: Knowing the publicity of this 10 committee, has that deadline for those proposals been 11 set? 12 DR. ROSWELL: I believe the deadline for 13 the call for proposal is August 24th. 14 (Technical malfunction.) 15 DR. HAMBURG: -- diverse set of health 16 effects. You might or might not find among them some 17 unique condition that would be of considerable 18 intellectual interest. It isn't obvious to me why it 19 would necessarily have particularly great medical or 20 social interest, and maybe you could explain that. 21 ASSISTANT SECRETARY JOSEPH: I think it's 22 the result of the social and political history of the 23 way this problem came to the fore. In the earliest 24 days of concern about this issue, before anyone knew 25 how many people were suffering, what they were 101 1 suffering from, for example, which we're now beginning 2 to learn, there was sort of a fascination with what 3 came to be called "the mystery illness." Part of it 4 had to do with conspiratorial theories around chemical 5 and biological warfare. Part of it had to do with 6 virtually everybody in the country seeing the Scud 7 missile attacks on CNN. Part of it had to do with 8 other kinds of special concerns that this or that 9 particular disease causing agent, the oil well fires, 10 whatever, might have caused illness in a large group 11 of people. 12 And really the idea of a Persian Gulf 13 illness, a mystery illness, a Persian Gulf Syndrome 14 was really the driving force in the early days -- I 15 mean two or three years ago -- of this issue. I think 16 that as the data has begun to come in, there is more 17 understanding of the kind of perspective that you have 18 put on it, Dave, but the earliest, and still you'll 19 see in the media from time to time -- as a matter of 20 fact, one of the newspaper headlines after that report 21 was issued two or three weeks ago was "No Persian Gulf 22 Illness Found," which was a total distortion of what 23 we found and said, but there still is, I think, a 24 fascination with finding the mystery, of proving the 25 agent, or whatever, though I think there is a great 102 1 deal of data on the opposite side of that balance. 2 I would also add or accentuate the point 3 you made, is nothing that we've said so far can be 4 taken as an indication that there is not within those 5 many causes of illnesses and very broad range of 6 symptoms and diagnoses perhaps specific clusters of 7 small numbers of things that are unusual. 8 Well, one we have found, the earliest 9 found was leishmaniasis, which was talked about, and 10 we now have, I believe, 32 cases or 37 cases of 11 leishmaniasis, including about 20 cases of visceral 12 leishmaniasis, coming out of the Gulf War. That is a 13 very unusual finding in American medicine. You don't 14 find leishmaniasis being reported in this country to 15 that extent. 16 But that's quite a different thing that 17 the sort of the specter of a mystery illness. In 18 fact, early in the history there was quite a bit of 19 speculation, much of it irresponsible, that 20 leishmaniasis was the cause of all of these symptoms 21 that were being seen in all our people. 22 UNDER SECRETARY KIZER: Let me just make 23 a couple of additional comments because I think your 24 perspective, Dr. Hamburg, is really one that has been 25 shared from the VA certainly as long as I've been 103 1 associated with the agency. Whether there is or is 2 not a single syndrome is merely a question that needs 3 to be answered, but it really doesn't go to the heart 4 of the much larger question of whether there are 5 multiple syndromes or whether exposures or other 6 things may contribute to the occurrence of these 7 commonly diagnosed conditions. 8 I mean there are several tiers of 9 questioning here. I think the issue of one syndrome 10 or not is really a product of the media and has not 11 colored the investigators' thinking, and there are 12 other questions that have to be answered as to whether 13 whatever occurred in the gulf may contribute to the 14 occurrence of these commonly diagnosed conditions. 15 There's a whole train of reasoning out there that a 16 number of our investigations are looking at. 17 The other thing that I think should not be 18 ignored in this whole process also is the fact that 19 the issues that are being asked or the questions that 20 are being asked have considerable relevance to issues 21 that go beyond the gulf. Indeed, many of the 22 questions related to industrial, occupational, 23 environmental exposures occur in the civilian setting 24 and other settings, and we shouldn't overlook the 25 opportunity that these investigations and this whole 104 1 effort may have in further elucidating or answering 2 questions that go far beyond the specific questions 3 related to the gulf. 4 DR. ROSWELL: As we have this very 5 important discussion about possible causes and whether 6 or not there exists a single syndrome, I think it's 7 imperative that we not lose the perspective of the 8 veteran. These are the people that deserve a complete 9 and truthful answer of factors that may be affecting 10 their health today. They deserve health care that is 11 available now, and in most cases, health care can be 12 very beneficial to veterans of the Persian Gulf War 13 who are now experiencing medical problems. 14 They do not, however, deserve to be 15 stigmatized by incorrect assumptions that they're 16 harboring some type of mystery illness, and that's why 17 I think it's imperative that we maintain these open 18 minded objectivity that we have tried to retain at 19 this point. 20 DR. FALK: May I just make one comment on 21 that quickly? I think different diseases oftentimes, 22 as Dr. Joseph implied, present differently with very 23 different symptoms, and they're easily teased apart, 24 and disease from different kinds of exposures will 25 similarly look differently. 105 1 I think the idea that many of these 2 symptoms overlap in ways lead for some kind of a 3 search for a unitary hypothesis, and so I think it's 4 inherent when many people have similar kinds of 5 complaints that one always looks for, you know, the 6 simplest hypothesis. 7 CHAIR LASHOF: Any other questions? 8 Let me ask a few now and then we'll 9 proceed around. 10 I wanted to ask you, Dr. Kizer, whether 11 the locator data, trying to pinpoint where everyone is 12 -- what it would take to speed that up so that it was 13 done before the end of this year. This committee has 14 less than a year and a half to complete its work. 15 ASSISTANT SECRETARY JOSEPH: Let me answer 16 that. 17 CHAIR LASHOF: Oh, I'm sorry. 18 ASSISTANT SECRETARY JOSEPH: You addressed 19 it to Ken because it's a DOD/Army study. 20 CHAIR LASHOF: I'm sorry. 21 ASSISTANT SECRETARY JOSEPH: The study has 22 already been speeded up with an additional infusion of 23 resources that moved it back to, as I said, about 24 around Christmas, December, January, '95-'96. I think 25 now we're at the limitation of data entry, and I'm not 106 1 sure. I will give you an answer to that question, 2 Joyce, but I think an increment of resources would not 3 bring it back further than where we expect to see it 4 at the end of '95, but I will give you an answer to 5 that. 6 CHAIR LASHOF: On your CCEP study -- well, 7 I won't call it a "study" -- the protocol and 8 evaluation, the clinical assessment, you do give us 9 comparison of the symptom rate with a whole series of 10 clinical ones. One that I thought was in there was 11 the National Ambulatory Medical Care Survey. 12 Now, isn't it possible to obtain from the 13 National Ambulatory Medical Care Survey a group that 14 are comparable in age and sex distribution? And why 15 wasn't that comparison made? 16 ASSISTANT SECRETARY JOSEPH: I'm sure we 17 could get a sample from that study that was gender and 18 age comparable. You would still have the argument 19 that no civilian populations is comparable to the 20 health and fitness and perhaps other characteristics 21 that you and I can't think of of a military 22 population. So we think that there is important 23 information to be mined out of these comparisons. 24 That's why we put them in the report, but we also 25 caution against anything that we can see as an 107 1 existing database that is truly comparable. 2 I must tell you also that the thing that 3 this has done for me most in watching this ride along 4 is a realization of the limits of our medical 5 diagnostic "nosology" and capability. The more you 6 get into symptom diagnosis and trying to see where 7 groups of symptoms compare to other groups of 8 symptoms, the more you find clusters and individual 9 patients who bear out that experience that we all have 10 in practicing medicine, that many patients you cannot 11 pin an ICD-9 definitive diagnostic label upon, and I'm 12 sure that's true in all the ambulatory care studies, 13 as well as the CCEP. 14 DR. ROSWELL: Work that's actually been 15 conducted at the Birmingham VA Medical Center did just 16 what you spoke of, and there we surveyed Persian Gulf 17 veterans seeking care for symptoms being reported and 18 then compared the answers they provided with age and 19 gender match controls, who were also veterans seeking 20 care at the same VA medical center and compared the 21 relative ratio. 22 We did find that certain symptoms, in 23 fact, many of the symptoms mentioned were reported 24 more commonly by the Persian Gulf veterans, although 25 they were quite common in the age and gender match 108 1 controls, as well. 2 CHAIR LASHOF: I think there's no question 3 that these are common symptoms, but I would think that 4 if you're going to publish any kind of comparable 5 group, if there is a group that at least is comparable 6 in age and sex, it would have been more helpful than 7 a generalized population that comes to a clinic who 8 basically are much older and sicker people than one 9 would expect in the veterans, and whether it's worth 10 going back and doing that now, I don't know. It 11 depends on how much work it is, but I would suggest 12 that you might take a look at that. 13 I'd also like to ask Dr. Falk and Dr. 14 Roswell to comment further on the CDC role. CDC, as 15 the epidemiologic arm of the government, I was 16 surprised, frankly, to see that the only epidemiologic 17 studies that they are actively engaged in are the one 18 in Pennsylvania, which they're doing at the request of 19 the Pennsylvania Department of Public Health, and the 20 one in Iowa that Senator Harkin brought to the fore. 21 And I'd like to know more about CDC's role 22 in looking at the protocol of the other epidemiologic 23 studies. I'd like to know whether the studies being 24 done by DOD and VA and any other studies that are 25 being carried out in the country of an epidemiological 109 1 nature are all comparable so that the data could be 2 pooled and a meta analysis performed at the end. 3 DR. FALK: Let me begin. Several things. 4 One is I think the Coordinating Board has really been 5 a very important function and has brought the people 6 from the different agencies together much more so than 7 at least has been my experience in previous situations 8 like this. 9 We have had active participation with the 10 Coordinating Board. We do have efforts that are 11 underway to look at ways of asking comparable 12 questions in similar kinds of studies, and comments 13 back and forth on the different studies. So there is 14 active participation in that regard. 15 I think -- and we very much appreciate, I 16 think, from our perspective the effort of the 17 Coordinating Board to bring the groups together and 18 build that sense of coordination. 19 I think historically as I look back at CDC 20 over the years, I've been at CDC for a little over 20 21 years now, and I have watched several efforts or 22 participated in them from the soldiers who 23 participated in the Nevada test site activities to the 24 Agent Orange activities at CDC, and now Persian Gulf 25 activities. We have in each of those incidences 110 1 either responded to a request from a member of the 2 public in a particular situation or responded to 3 requests directly from the VA and other groups. 4 We've not had in a sense a standing unit 5 working on veterans' affairs. So it has been in a 6 responsive mode, and I think in this particular 7 situation there has been an effort to build a 8 coordination across agencies. 9 DR. ROSWELL: I would certainly endorse 10 what Dr. Falk has said. In fact, a CDC representative 11 serves on the Research Group and, in fact, has had 12 direct input into the development of the epidemiologic 13 study that will be conducted by the Department of 14 Veterans' Affairs. 15 UNDER SECRETARY KIZER: Dr. Lashof, I 16 might also add two points. One of the things that has 17 delayed or at least taken more time than I would like 18 on getting this 15,000 individual study underway has 19 been the efforts to coordinate and make sure everyone 20 has looked at the protocols, bought into the 21 protocols, agreed on the questionnaire, and to assure 22 the comparability of the data, and when you do that 23 type of thing, it does take longer to get your studies 24 underway. 25 The other point I would make is I have 111 1 discussed with Dr. Richard Jackson, the head of the 2 National Institute of Environmental Health, the 3 potentiality of actually having -- at least that part 4 of CDC having more of an ongoing role in veterans' 5 issues. 6 CHAIR LASHOF: Thank you. 7 ASSISTANT SECRETARY JOSEPH: Dr. Lashof, 8 no one has mentioned so far this morning a fact which 9 I presume you all know, that there are two Institute 10 of Medicine committees that are backing up this 11 effort. There's what we call the big committee, which 12 is overseeing the coordinated research portfolio, and 13 there's the so-called small committee, which is 14 helping us with the CCEP. 15 You're going to hear from them tomorrow. 16 CHAIR LASHOF: We're going to hear from 17 them tomorrow. 18 ASSISTANT SECRETARY JOSEPH: And we would 19 welcome anything that comes out of that interaction in 20 terms of methodologic improvements that we can either 21 put into current studies or studies which will 22 undoubtedly be going on in the future. 23 CHAIR LASHOF: Let me ask just one more 24 question and then I'll move it along. The VA is 25 looking at the veterans who have been discharged. DOD 112 1 is looking at those who are still in the service; is 2 that correct? 3 ASSISTANT SECRETARY JOSEPH: And their 4 dependents. 5 CHAIR LASHOF: Pardon? And their 6 dependents. 7 What percentage of the men who served in 8 the gulf are now veterans discharged and what 9 percentage -- what are the numbers in the comparable 10 groups we're looking at? Who's still on active duty 11 and who isn't is the question, I guess. 12 UNDER SECRETARY KIZER: It's about 50-50. 13 I don't have the exact number, but those are the ball 14 park. 15 CHAIR LASHOF: All right. 16 DR. CUSTIS: Just a couple of questions 17 for whomever cares to answer. Regarding the early 18 reports of possible synergistic toxicity of 19 pyridostigmine in insecticides, do you have a measure 20 of how many people, how many actually ingested the 21 pyridostigmine? 22 ASSISTANT SECRETARY JOSEPH: We have an 23 inexact measure because as you know, pyridostigmine 24 was issued to a significant number of troops in the 25 gulf, and we have that number and can give it to you, 113 1 but they were told to take it upon the order of their 2 unit commander. 3 What we cannot tell you, and this is 4 again, I think, the kind of lesson we can learn for 5 improving practice in the future; what we cannot tell 6 you is who took how much, when they took it, over what 7 period of time based on the orders that were given by 8 the unit commander, but we do have rough numbers of 9 both the actual numbers of people who were given 10 pyridostigmine and also the vaccines that have been 11 talked about, and you'll also see in the CCEP some 12 self-reported exposure information. 13 With respect to the insecticide, that's 14 also very complicated because insecticide was 15 available, but during most of this period for most of 16 the individuals, there were really very little 17 problems with insects at that time of year in the 18 desert. That's evidenced by the very low rates of 19 insect borne diseases that we see among the troops. 20 Again, there's no way to have a clear 21 understanding of who sprayed what during what period 22 on which pieces of their clothing. 23 DR. CUSTIS: The other question is based 24 on my ignorance of depleted uranium. Just how 25 dangerous is it to have retained imbedded in fragments? 114 1 ASSISTANT SECRETARY JOSEPH: Well, there's 2 a study going on to look at that issue right now in 3 terms of both those who were exposed to depleted 4 uranium in the handling of munitions and to those 5 casualties that were involved with depleted uranium 6 shell heads. 7 DR. CUSTIS: Is it very dangerous or not? 8 ASSISTANT SECRETARY JOSEPH: I'm not sure 9 that one can give you a good answer to that question 10 until the studies are done. 11 DR. ROSWELL: Dr. Custis, the Baltimore 12 VA, in cooperation with Department of Defense, is 13 following just over 30 individuals who were exposed to 14 depleted uranium. Our concern is not so much one of 15 the radiation. The radioactivity of depleted uranium 16 is extremely low. 17 However, because it is a heavy metal, the 18 concern was its properties as a heavy metal, 19 specifically nephrotoxicity, as a possible concern, 20 and to date we have not seen any decline in creatinine 21 clearances or any change, any measurable changes in 22 renal function of those people who are being followed 23 in this interagency study. 24 So we do know that trace amounts of the 25 depleted uranium is being excreted in the urine of 115 1 these individuals, indicating that it's not totally 2 inert, but so far no measurable changes in physiologic 3 function have been identified. 4 DR. LANDRIGAN: Depleted uranium, about 12 5 or 13 years ago the National Institute for 6 Occupational Safety and Health did quite a thorough 7 study of workers in a plant in Tennessee who were 8 making armaments out of depleted uranium, and the 9 focus, as you say, was on renal toxicity, and 10 hopefully those reports are available to you. I 11 believe it was done as a health hazard evaluation from 12 NIOSH. 13 I'm not sure if it ever was published in 14 the open literature. 15 The other thing that occurs to me about 16 the depleted uranium, its metabolism, its 17 toxicokinetics in the human body are at least roughly 18 similar to those of lead, probably seeks bone, and one 19 technique that you could apply to study these people 20 who were exposed to the depleted uranium that would 21 not have been available to the NIOSH investigators a 22 decade ago in Tennessee is direct measure of any 23 uranium that might be in bone, direct noninvasive 24 measurement using the X-ray fluorescence technique 25 that a half dozen labs around the country now have 116 1 available. 2 CHAIR LASHOF: Thank you very much, Dr. 3 Landrigan. 4 Dr. Caplan. 5 DR. CAPLAN: Well, my first question is 6 about outreach, and it's to any of the panel. Excuse 7 me. If you'd care to comment, about a year ago I 8 moved from Minnesota to Pennsylvania, and I had to get 9 a new driver's license. When I went to get the 10 driver's license, I asked the lady at the desk why she 11 hadn't asked me about organ donation as an option on 12 the driver's license, and she said, "Well, we're 13 supposed to, but you probably wouldn't want to get 14 involved with that anyway." 15 I'm curious about your views, given all of 16 the 800 numbers and efforts that have been made to 17 seek out symptom reporting. Are you satisfied? Do 18 you think this is working? Do you think that people 19 out there who served really do understand that they 20 can report and that they've been called upon if we did 21 a sample out there of some thousand people randomly, 22 they'd tell us, "Yes, we're all aware of this," or, 23 "Gosh, I didn't know," or what's your read on that? 24 UNDER SECRETARY KIZER: This is an area 25 where we think we need to continue to work on it. 117 1 Certainly by the nature of some of the veteran 2 populations that we're focus on, they're sometimes 3 hard to access. We've used multiple vehicles. Using 4 the Internet is not necessarily one that will reach 5 many of them. We've used a variety of mailings and 6 PSAs. 7 I was surprised to hear about three weeks 8 ago a couple of folks called me from California saying 9 they had heard me at 12 o'clock or one o'clock in the 10 morning on a radio station with some of the PSAs that 11 we've done. 12 DR. CAPLAN: You're right. You're right 13 after the organ donation. 14 UNDER SECRETARY KIZER: No, I think that 15 came on later, but we've used a variety of instruments 16 and vehicles to get this out. We know we need to 17 continue to intensify this effort. In some areas we 18 think it has been covered quite well, and we have had 19 good success. 20 Our message has uniformly been to 21 encourage all veterans to come in whether they have 22 complaints or not, to seek care, get on the registry. 23 Indeed, the majority of the folks on the registry 24 don't have specific complaints, but this does provide 25 a baseline for further assessment down the road, and 118 1 as was talked about earlier, ten years, 20 years, 2 whatever, down the road if questions come up, we would 3 like to have as much baseline information on folks as 4 possible. 5 So your question is absolutely right, and 6 certainly in my prior experience in other campaigns of 7 this type you need to use as many vehicles as 8 possible, and even in doing that and over a prolonged 9 period of time, you're still not going to reach 10 everybody that you want to, and you just have to keep 11 trying. 12 ASSISTANT SECRETARY JOSEPH: Our problem, 13 Dr. Caplan, is a little different at DOD than VA 14 because in one sense we have an easier population to 15 access, and I guess the good news is I would say that 16 the efforts that have been made in DOD to access, 17 starting with a joint letter from the Secretary of 18 Defense and the Chairman of the Joint Chiefs of Staff 19 right down through, have really been extremely 20 aggressive and very productive. 21 We have another somewhat different problem 22 than the VA, however, and I would appreciate as you go 23 along any thoughts about this that the committee has. 24 You will hear persistent reports from active duty 25 troops that there is under-reporting or under- 119 1 registration because the sergeant or the lieutenant or 2 the captain in one way or another will discourage 3 members of the unit from reporting in on this or for 4 taking sick time. 5 That comment you will also hear about our, 6 I think, very striking data on lack of disability as 7 measured by work time, and you will hear, I'm sure, as 8 a committee that there are subtle and indirect and 9 sometimes more direct pressures placed upon troops not 10 to come forward. 11 When you try to run those down, they're 12 hard to find, and any light you can shed on that as 13 you go along would be helpful to us because it's an 14 important part of that denominator obviously. 15 DR. BALDESCHWIELER: Two questions for Dr. 16 Falk. 17 CHAIR LASHOF: Oh, I'm sorry. I didn't 18 mean to cut you off. 19 DR. CAPLAN: I just had two other 20 questions. One follows up on this outreach issue, and 21 we've heard a lot so far today about epidemiological 22 inquiry to see who is exposed to what. I'm curious if 23 you could comment for us again, anybody who cares to 24 on the panel, about the understanding of basic 25 science, either animal models or just bench models of 120 1 some of the health effects of things like 2 pyridostigmine and the insecticides and so on. It 3 seems to me as I've followed this issue, basic science 4 knowledge was pretty poor a few years back about what 5 the exposure was in terms of health effects for some 6 of these agents that might have been in play in the 7 gulf, and I'm just curious about what your thoughts 8 are as to what's known now, adequacy of funding there, 9 and so forth. 10 ASSISTANT SECRETARY JOSEPH: I think 11 there's a range ranging all the way from some things 12 -- for example, the licensed and tested and 30-year 13 used vaccine in some cases to a great deal of medical 14 uncertainty about long term and chronic effects of 15 lots of things, particularly in combinations, and this 16 is one of the dilemmas in there. 17 If you say, well, we have very good 18 evidence that Compound X does not cause this pattern 19 of illness, particularly over time, and then somebody 20 says, "Well, what about if you combine Compound X with 21 Compound Y?" Well, we have a little bit of data 22 there, and then somebody says, "Well, maybe it's 23 Compound X and Y and Z." 24 It is difficult. The data isn't there. 25 I would doubt very much certainly within the lifetime 121 1 of this inquiry, not just the committee, but the 2 inquiry, that we will have that kind of perfect data 3 around combinations, but you look where you think. I 4 mean it's, again, Sutton's law. You go where the 5 money is, and you look for those things that might be 6 important. 7 For example, the depleted uranium studies, 8 the studies that have been done since the President's 9 initiative now looking at pyridostigmine and 10 combinations with other agents, first in animal 11 models, et cetera, and you pick off the ones that you 12 think are the ones that are of most concern and where 13 there might be some payoff. 14 As of yet I know of no data that has 15 surfaced on any, starting with the smoke study, oil 16 plume study. I know of no data that's surfaced on any 17 of these questions that has shown a probable 18 relationship to specific illness in the gulf, but 19 that's not to say it's not there. 20 DR. CAPLAN: I appreciate that, and the 21 reason I asked about that was keeping in mind this 22 notion of looking forward as well as back in terms of 23 making sure that maybe for some of these things it's 24 going to be necessary to set up an infrastructure to 25 finally capture some answers to some of these 122 1 questions. 2 Lastly, on the issue of expertise and 3 symptoms, one of the things that I've heard already 4 from some people who've dealt with VA is that maybe 5 the expertise in listening to symptoms and thinking 6 about responses to them isn't what it should be in 7 terms of the kind of population that they're more 8 familiar in dealing with in terms of health problems 9 and health difficulties. 10 So I'm just curious if I could get a 11 comment maybe from Dr. Kizer about, you know, the 12 system is a big one; it's got a big population to deal 13 with; this is a fraction of the population that comes 14 in with their complaints. Is the ability to get 15 information about symptomatology and ideas about what 16 might be going on through the VA adequate? 17 UNDER SECRETARY KIZER: Certainly efforts 18 have been made to, in fact, do that. As you note, 19 it's a large system. It's the nation's largest 20 integrated health care system, and it is undergoing a 21 massive reorganization and transformation for other 22 reasons, and I think based at least on the feedback 23 that I've gotten, talking to patients at various 24 forums, that in some cases it has been excellent and 25 that the service, the attentiveness, the customer 123 1 service, if you will, to patients has been absolutely 2 great. People have been very happy with it. In other 3 cases it has not been what we would like to see, and 4 we're trying to address that. 5 We have had numerous forums and vehicles 6 internally to make sure that our clinicians are 7 approaching the problem in a uniform and standardized 8 manner; that they are, indeed, listening and being 9 judicious in what they say, recognizing that there are 10 many questions that research has yet to answer. 11 So your point is well taken, and any 12 system as large as this, there's going to be a 13 variability in response, but we are certainly making 14 the effort to assure that folks have the audience and 15 get the information and are treated the way that we 16 want them to be. 17 DR. ROSWELL: With over 14,000 physicians 18 in the VA health care system, it is difficult to get 19 to each and every one of those, as Dr. Kizer alluded 20 to. One of the things he did not mention specifically 21 though was his efforts to appoint a physician 22 coordinator for Persian Gulf veterans' care at each of 23 the 172 VA medical centers nationwide. That physician 24 serves as a clinical focal point, and in fact, each of 25 those physicians were recently asked to attend a 124 1 national program in Baltimore where literally the 2 state of the art, so to speak, of our current 3 understanding of Persian Gulf issues was discussed in 4 a three-day workshop. 5 In addition to that, various materials are 6 supplied to the physician coordinator, and as Dr. 7 Kizer alluded, we have had a variety of interactive 8 video tele-conferences, as well as other written 9 publications, to disseminate information. So it's an 10 imperfect effort, but it's a concerted effort to make 11 sure that we have that sensitivity, as well as that 12 clinical expertise when it's needed and where it's 13 needed. 14 CHAIR LASHOF: Dr. Baldeschwieler. 15 DR. BALDESCHWIELER: Two questions for Dr. 16 Falk. You mentioned serum assays with emphasis on 17 leishmaniasis. Did you assay for other pathogens, and 18 what was the rationale for those that you either did 19 or did not assay for? 20 DR. FALK: I know about the serum assays 21 for leishmaniasis. I can't answer specifically what 22 other things were looked for, but I can check on that 23 for you. 24 DR. BALDESCHWIELER: That would be 25 extremely useful. 125 1 And, secondly, with regard to 2 leishmaniasis, there was a hypothesis about a 3 potential low level of leishmania infection below a 4 level sufficient to create an assayable antibody 5 titre. What is the status of that hypothesis? 6 DR. ROSWELL: Well, it's difficult. One 7 of the current areas of research is better diagnostic 8 methods to identify patients who may currently be 9 having or have previously experienced leishmania 10 infection. That's an area of active research both in 11 the Department of Defense and in the VA and CDC as 12 well. We're using the very best diagnostic methods we 13 have available, but as you accurately point out, 14 they're imperfect, and so it's an area for research. 15 With regard to other infectious diseases, 16 we know that there were infectious diseases in the 17 gulf. Most of those were short-term, acute illnesses, 18 diarrheal illnesses that you expect with any type of 19 deployment like that. 20 As far as chronic infectious diseases that 21 might this be affecting some of the 700,000 people who 22 served in the gulf, the only known chronic diseases 23 that we're aware of that may currently be a factor 24 would include malaria, brucellosis, and Q fever. 25 There have been no cases of brucellosis identified, 126 1 one or two cases of Q fever, and a similar number, one 2 or two cases of malaria identified. 3 Other than that, we have just not seen 4 chronic infectious disease. The leishmania infection, 5 including the 12 cases of visceral atrophic leishmania 6 are the most prevalent chronic infectious disease 7 that's been observed out of the gulf experience. 8 DR. BALDESCHWIELER: I understand there is 9 an initiative to develop a PCR based assay to assay 10 the pathogen directly. Has that -- 11 ASSISTANT SECRETARY JOSEPH: I understand 12 that there are expected to be scientific difficulties 13 in bringing that to accomplishment. That's my 14 understanding of the current status. That's not going 15 to be an easy task. 16 CHAIR LASHOF: I have just one final 17 question for Dr. Roswell, and then we will be breaking 18 for lunch. You mentioned that the questionnaire for 19 the protocol for the broad epidemiologic study is over 20 still in the Office of Management and Budget waiting 21 clearance. Having been in the government before, I 22 know how long that can take. 23 How long has it been there, and what can 24 we do to get it out of there for you? 25 DR. ROSWELL: We're anticipating OMB 127 1 approval in the very near future, but we'll certainly 2 appreciate your support in obtaining that approval. 3 Thank you very much, Dr. Lashof. 4 CHAIR LASHOF: I want to thank the panel 5 very much. I think this morning has been very 6 productive, very useful to all of us. 7 We'll stand adjourned for lunch. We will 8 meet promptly at 1:45, and we will hear from the 9 public open comments. 10 Thank you. 11 (Whereupon, at 12:30 p.m., the meeting was 12 recessed for lunch, to reconvene at 1:45 p.m., the 13 same day.) 128 1 AFTERNOON SESSION 2 (1:48 p.m.) 3 CHAIR LASHOF: I'd like to call the 4 session to order. 5 This afternoon we have a series of people 6 who have requested to present comments for us. Let me 7 give the ground rules. Because there are so many 8 people who want to present, we probably will run a 9 little over. We have some additions to the original 10 list, and I think they're posted on the board out 11 there or is there a new list already? 12 Okay. Each person has been allotted only 13 five minutes. That is the only way we can get through 14 the time. The presenter will have five minutes to 15 present, and then the panel will have an opportunity 16 to question the presenter. 17 I will indicate at the end of three 18 minutes. When the presenter has two minutes left, 19 I'll up two fingers, and I will cut them off at the 20 end of five, but then we'll have time for the panel to 21 ask questions. 22 If the presenter goes over, then it makes 23 it impossible for the panel to ask questions, and I 24 think that's important that we be able to do that. 25 So if our first speaker will come forward. 129 1 MR. HOBBS: My name is George Hobbs. I 2 was with the 736th Supply and Service Battalion as the 3 battalion nuclear, biological, and chemical 4 noncommissioned officer or as I will refer to my job 5 as the NBC NCO. 6 In 1985 I completed the NBC officer and 7 NCO defense course, and in 1986 DMOS-54 qualifying 8 course. I will also offer my DD-214 discharge and 9 other papers about my background so the committee can 10 see where I'm coming from. 11 My unit was stationed at King Klied 12 Military City in Saudi Arabia. My unit was 13 approximately five miles west of the city, one mile 14 east of the Saudi Engineer Building, and the airport 15 was about one mile south of our unit. 16 My testimony is about my experience at 17 KKMC. I wish to make it very clear that I do believe 18 that numerous vets are ill and that they are hurting. 19 However, I do not believe that the majority of the 20 cases are from the effects of chemical weapons. 21 In the packet I submitted, there is a 22 letter from the Assistant Commandant of the NBC School 23 in Alabama and states his findings over there in KKMC; 24 also some newspaper clippings about findings between 25 the nerve agent pill and the insect spray. 130 1 I would like to first address the nerve 2 agent pill. When the war was over and I had to turn 3 in the nerve agent pills to a medical unit outside of 4 KKMC, I asked the sergeant in charge of the medical 5 unit what was going to happen to the pills. He told 6 me that the pills were not FDA approved and that they 7 were going back to Germany with his unit, and also in 8 the packet I have in there a public affairs brief from 9 the Department of Defense where the Department of 10 Defense said that the pills were FDA approved. When 11 we turned them in, we were told they were not FDA 12 approved. 13 I also know of two units, the 249th and 14 the 209th, that took the pills like they were 15 aspirins, even though we were told to keep the pills 16 under strict control, and they were not to be used at 17 any time unless word came down from higher 18 headquarters. 19 Second, I would like to address the 20 chemical question. First, if the chemicals were used 21 at KKMC, there would have been reports from the 22 medical units about people with chemical symptoms. 23 There were none. 24 Secondly, I was in constant contact with 25 our higher headquarters. There was not even a rumor 131 1 or a whisper of chemical use. 2 We had our chemical -- we had our MA 3 alarms out. They never registered. We also had the 4 M-256 kits out, which would detect chemicals. None of 5 them ever registered. 6 At this time I wish to address the VA. I 7 also have problems with my hands, my feet, and my 8 knee. I was -- took the physical. I was told at the 9 end of the physical if I had any complaints to come 10 back and get another physical; came back, got another 11 physical. 12 My hands were numb. They set me up and 13 told me I had to wait four months. I have in the 14 meantime gone and seen a specialist. He has got me on 15 two drugs. I spend thousands of dollars of my own 16 money, and I'm only temporarily what you would call 17 healed because I can function pretty good as long as 18 I stay on the pills. 19 I wish to address the VA. In the packet 20 that I handed in, you will find out the VA doctor 21 turned me down even though a specialist said, yes, I 22 have problems, and in the packet the VA doctor says he 23 doesn't even understand why I'm seeing a doctor. 24 I also turned in a statement about my knee 25 from a specialist who said that while being in Desert 132 1 Storm my knee was irritated. I spent two weeks 2 visiting the hospital in Saudi Arabia, and once more 3 the VA doctor says why was I seeing a specialist for 4 my knee. 5 I was one of the lucky ones. Even though 6 I have some numbness that comes and goes and I'm 7 spending my own money seeing a doctor twice a year, 8 paying for my own medicine, at least I can function. 9 There are many vets out there who are not as lucky as 10 I am, and I hope that this panel can find out what's 11 wrong. 12 I would like to make one suggestion to 13 this panel. While you're looking into causes, please 14 looking into the kerosene being used over there. 15 Kerosene was sprayed at least three times a day in 16 front of our unit. People in our unit, in my unit, 17 that has had problems worked with kerosene. I was one 18 of them. I ruined five pairs of gloves working with 19 the kerosene, and from around about or by word of 20 mouth, I was told that the kerosene was not a treated 21 kerosene like we have over here. So that might be 22 something that this committee might want to look into. 23 I would like to thank this committee for 24 their listening to me. 25 Thank you. 133 1 CHAIR LASHOF: Thank you very much. 2 Does the committee have questions? We 3 have five minutes for questioning. 4 Andrea Kidd Taylor. 5 MS. TAYLOR: Mr. Hobbs, you mentioned the 6 nerve pill that members were taking. Was that 7 something different than what we know already? What 8 were the contents of the nerve pill? Do you have any 9 idea? 10 MR. HOBBS: The nerve agent pill was a 11 pre-treatment pill, and this was in case you were 12 going to come under chemical attack. You would take 13 this hours before. 14 MS. TAYLOR: Okay. 15 MR. HOBBS: And what it would do, it would 16 speed up your system to get the chemical rushing 17 through. 18 MS. TAYLOR: That's the other question. 19 You mentioned kerosene. Is this something that our 20 government used, the kerosene that you mentioned that 21 was used quite often? This was something that our 22 government provided to -- 23 MR. HOBBS: No. 24 MS. TAYLOR: Okay. 25 MR. HOBBS: This was from the Saudi 134 1 government. Where I was at KKMC, it got quite cold 2 during the winter weeks, not months, but they had 3 about six weeks of winter, and they would use kerosene 4 heaters, and we had quite a bit of trouble with them, 5 and troops even used the kerosene to put on their 6 wooden floors to keep the dust down. So it was used 7 in the heating, in the roads, and to keep dust down in 8 the tents. 9 MS. TAYLOR: And this was provided by the 10 Saudi government? 11 MR. HOBBS: By the Saudi government, yes. 12 MS. TAYLOR: That's all. 13 CHAIR LASHOF: Mr. Rios. 14 MR. RIOS: You mentioned that they were 15 taking these pills like what did you say, like? 16 MR. HOBBS: Like aspirins. 17 MR. RIOS: Why? Were they concerned about 18 something or why were they taking them? I thought 19 they were under order not to take them unless -- 20 MR. HOBBS: They were, but like the one, 21 you know, like I alleged, the 209th, I was told by 22 their NBC NCO that they just started taking them when 23 they got off the ship. Why? I don't know. From my 24 understanding, there's quite a few units that took 25 them. 135 1 MR. RIOS: They were scared or what? 2 MR. HOBBS: Scared. 3 MS. NISHIMI: Thank you, Mr. Hobbs, just, 4 again, for staff making sure that we have all of this 5 material. Thank you. 6 MR. HOBBS: Thank you. 7 CHAIR LASHOF: Thank you very much. 8 The next person is Teresa Huschart -- 9 Huschart. I'm sorry. 10 MS. HUSCHART: I'm just going to lay that 11 there. That's part of my presentation. 12 Good afternoon, ladies and gentlemen and 13 distinguished members of the Advisory Committee. My 14 name is Teresa Huschart. I'm from the Medenica Clinic 15 and the Cancer Immunobiology Laboratory in Hilton 16 Head, South Carolina. I will be speaking for Dr. 17 Medenica who was unable to attend today. 18 Today I would like to speak to you about 19 our experience and success with a veteran of the 20 Persian Gulf War who was suffering from an auto-immune 21 like disease. Studies performed in collaboration with 22 the Adolph Coors Clinic of Immunoregulation have 23 determined that unexplained symptoms experienced by 24 our patient are attributable to a disease that may 25 fall in the group of multiple chemical sensitivity 136 1 syndrome, a chronic immunological disorder that 2 develops from related exposure to chemicals. 3 Our clinic has experience with patients 4 who suffer from chemical sensitivity syndrome. The 5 difference between multiple chemical sensitivity 6 syndrome and the disease from which the veterans of 7 the Persian Gulf War suffer is that exposure to the 8 two different types of agents are involved: chemicals 9 and biologicals. Although the exact source of the 10 causative agent or agents has not yet been determined, 11 the etiology of the syndrome can be explained. 12 A toxin or toxins which have entered the 13 body for some reason were not metabolized by the human 14 detoxification in totality. These may remain 15 nonmetabolized ingredients. While these chemical and 16 biological molecules are too small to complete 17 antigens by which the body would elicit immune 18 response, these particles act as a heptane by 19 combining with normal proteins, becoming antigenic and 20 inducing the immune system to produce an immune 21 antibody. 22 The combination of heptane and the 23 patient's proteins form autoantibodies which circulate 24 within the blood stream. These are deposited in the 25 organs, including those of the central nervous system, 137 1 producing a wide variety of symptoms depending on the 2 tissue localization of the heptane or immune complex. 3 This activity initiates an autoimmune phenomenon. 4 The signs and symptoms manifested depend 5 on the location of the tissue injury and may mimic 6 known diseases. In our experience with this type of 7 disease from which the veterans are suffering, in 8 multiple chemical sensitivity syndrome we have seen 9 Parkinson-like syndromes, porphyria-like syndromes, 10 multiple skin allergies, rashes, gastrointestinal 11 symptoms, pulmonary problems out of the 12 patients 12 that we have studied. 13 Laboratory findings in these patients 14 include increased levels of interferon inhibitor 15 factor, low serum interferon levels, low T helper 16 lymphocytes, and low suppressor lymphocytes, lower 17 natural killer cells, and reduced macrophage activity. 18 Tissue culture of blood and bone marrow 19 demonstrate an autoimmune phenomenon which indicates 20 an autoimmune problem. 21 The source of the toxins can be from a 22 chemical origin, a biological origin, or from a 23 combination of chemical and biological sources. We 24 have identified crystalline structures in a muscle 25 biopsy from our patient who fought in the Persian Gulf 138 1 War. Although not enough of the muscle was received 2 to definitely identify the crystals, the presence of 3 the structures in the muscle tissue demonstrate the 4 toxins are present. 5 The toxins from biological sources act as 6 a type of viral disease eventually leading to chronic 7 fatigue syndrome which the patients have been 8 suffering from. The important point to remember is 9 that no matter the source of the disease as chemical, 10 biological, or both, an autoimmune response is 11 elicited by the body and which produces antibodies 12 that act against our own proteins in our organs. 13 We can combat this problem in one of two 14 ways. The first is with the development of a 15 monoclonal antibody against this agent which started 16 the activity in the body. Since we do not yet 17 understand the source of the toxin, a monoclonal 18 antibody would be difficult to develop. 19 The second way to combat the problem is by 20 removing the circulating toxins with plasmapheresis. 21 We are currently using plasmapheresis in immunological 22 therapy as the treatment of choice for this disease. 23 Various poisons, drugs, and toxins can be removed by 24 plasma exchange. 25 Due to restriction of molecular size or 139 1 the protein binding, it is impossible for certain 2 toxins to cross the dialysis membrane. So in these 3 situations plasma exchange has been proven to be 4 lifesaving by removing these toxins. 5 The process of plasmapheresis removes the 6 circulating immune complexes, the combination of 7 heptane, protein, and autoantibodies, and the 8 interferon inhibitor factor which works against the 9 natural function of the patient's immune system and 10 circulating toxins. When plasmapheresis is combined 11 with immunomodulation, the abnormalities of the 12 circulating cells of the immune system, such as the 13 circulating lymphocytes, the natural killer cells, and 14 the macrophages, can be reversed. 15 The macrophage activity results in the 16 reduction of chemotaxism and metabolism of 17 phagocytized antigens. This approach to combatting 18 the autoimmune disease experienced by multiple 19 chemical sensitivity patients and by our Persian Gulf 20 War patient has been an effective treatment with 21 minimal side effects. 22 The constituents removed from the plasma 23 can be analyzed to determine any common factors 24 present in patients, possibly leading to the knowledge 25 of common exposures among the Persian Gulf War. When 140 1 the causative agent can be removed and is known, it 2 can be quantitated. Then the quality available in the 3 plasma for exchange can be calculated from the 4 concentration multiplied by the patient's volume. 5 Samples could be pre- and post-drawn and 6 can provide information about the percentage of drop 7 in the plasma factor. Samples taken from the bags of 8 the plasma can provide information about the total 9 quantity of the factor removed. 10 Our study showed strong results in 12 11 patients suffering from multiple chemical sensitivity 12 who were treated with plasmapheresis and 13 immunomodulatory therapy. Plasmapheresis was 14 performed two consecutive days every four weeks for 15 four cycles. An immunomodulatory regime, including 16 interferon, interleuken, and other cytokines, was 17 given for three consecutive days in conjunction with 18 plasmapheresis protocol to increase the immune 19 competent cells. Four patients demonstrated complete 20 response, two showed partial response, and two 21 patients showed progression of their disease. 22 Levels of the toxins were reduced 23 dramatically in six patients. Serum interferon levels 24 were normalized in eight patients. The T helper cells 25 increased in nine patients. T suppressor levels 141 1 remained stable, and the natural killer cells 2 increased in ten patients. 3 With our Persian Gulf War patient, similar 4 results have been noticed. Our patient received 19 5 course of plasmapheresis treatments with 6 immunomodulatory therapy over a period of one year. 7 We have found that the disease has not progressed, and 8 our patient seems to be improving. 9 We believe that combination of 10 plasmapheresis treatments and immunomodulatory therapy 11 is a successful approach to combatting the illness of 12 the unexplained Persian Gulf War veterans. 13 Additionally, a study of the plasma 14 removed from these patients during treatment can serve 15 as an indicator of the origin of the symptoms 16 experienced by these veterans. 17 Thank you. 18 CHAIR LASHOF: Thank you very much. 19 Questions from the panel? 20 MS. LARSON: You're saying that you're 21 treating 12 patients with this syndrome from the Gulf 22 War? 23 MS. HUSCHART: No, we have -- what I'm 24 saying is that we have correlated. We have patients 25 that we treated with multiple chemical sensitivity 142 1 syndrome, which are patients that are similar to the 2 category of what this one patient -- 3 MS. LARSON: Right, and how many were Gulf 4 War veterans? 5 MS. HUSCHART: One. 6 MS. LARSON: Of the 12? 7 MS. HUSCHART: No, it was a different -- 8 if you want to say a total of 13 then. It was one 9 Gulf War and then -- 10 MS. LARSON: Okay, all right. How were 11 the patients referred to your clinic? 12 MS. HUSCHART: Usually by other patient 13 referrals or physicians. The physician that I work 14 with had worked over in Europe for a while. So 15 there's a large population that comes over from there, 16 as well. 17 MS. LARSON: Okay, and in the other 12, 18 you have multiple causes or you think there are 19 multiple causes? 20 MS. HUSCHART: That's correct. We were 21 measuring their serum samples and sending them out to 22 referral laboratories to check for certain chemicals 23 that they had possibly been exposed to. Some of the 24 levels were elevated; some of them weren't, but they 25 were grouped in a category because they had very 143 1 similar type of symptomatology that they were 2 experiencing. 3 MS. LARSON: Thank you. 4 CHAIR LASHOF: Anyone else? 5 I'd like to ask you, the clinic, the 6 Medenica Clinic and Cancer Immunobiology Laboratory, 7 is this specific for the treatment of medical -- 8 chemical, multiple chemical sensitivities, or is it a 9 general medical clinic that does this as well? 10 MS. HUSCHART: We are basically an 11 immunology and cancer clinic, and so we see patients 12 that have cancer and other related disease processes. 13 CHAIR LASHOF: Any others? 14 Dr. Baldeschwieler. 15 DR. BALDESCHWIELER: You mentioned the 16 observation of crystals in musculature. Can you 17 describe those in more detail? 18 MS. HUSCHART: Yes. I had two slides, but 19 I was afraid with the lighting of the cameras that 20 they wouldn't show up. Our patient had, I believe, a 21 muscle biopsy at Walter Reed Hospital, and they did 22 send us a sample, and so we were able to get that in 23 liquid tissue culture and take some pictures of that, 24 and unfortunately there was not enough of the sample 25 to actually find out what the crystal is. 144 1 We did send it off to Yale University, and 2 it came back inconclusive. Basically it's a striated 3 muscle that has some crystalline formation on it. 4 DR. BALDESCHWIELER: But can you describe 5 the crystal? What does it look like? 6 MS. HUSCHART: No. I mean it's unknown at 7 this time. 8 DR. BALDESCHWIELER: No, no, but can you 9 see the shape of the crystal? 10 MS. HUSCHART: Yeah. You can't -- 11 DR. BALDESCHWIELER: Is it colored or is 12 it clear? 13 MS. HUSCHART: It's clear. 14 CHAIR LASHOF: Could you submit the 15 pictures to us? 16 MS. HUSCHART: Yes. 17 CHAIR LASHOF: All right. 18 MS. HUSCHART: Actually in the folder that 19 I have for the committee, there's pictures in there, 20 I believe. 21 CHAIR LASHOF: Okay. We'll ask staff to 22 get that. 23 Any other questions? 24 Thank you very much. 25 MS. HUSCHART: Thank you very much. 145 1 CHAIR LASHOF: Nancy and Barry Kapplan. 2 I'm not sure. Both will be presenting. Please come 3 forward. 4 MR. KAPPLAN: Dr. Lashof, distinguished 5 committee members, thank you very much for allowing my 6 wife and I opportunity to present today. 7 We would never be able to present 8 everything. We have provided a written copy of our 9 testimony. 10 My name is Barry Stewart Kapplan. I'm a 11 major in the United States Army, retired. I just 12 recently retired from the active duty, and one of the 13 things I'd like to talk to you about is the fact that 14 my wife, my children, and I are part of no ongoing 15 litigation. Also we're not a member, official member, 16 of any Persian Gulf War illness group. We're just a 17 soldier and his family helping other soldiers and 18 their families that are dealing with some very bizarre 19 things. 20 But most importantly, I still retain 21 command responsibility for the guys that worked for me 22 during the war who are also sick, members part of the 23 93rd 227th Aviation Support Battalion of the Third 24 Armored Division. 25 Now, it's important to understand that for 146 1 15 years I had perfectly clear blue, 52 flight 2 physicals, not a thing wrong, ostensibly documented 3 cardiac, esophageal, Class 1 and Class 2 flight 4 physicals. Then in April when I was stationed in 5 northern Kuwait and southern Iraq around the Soff One 6 Area, we all became mysteriously ill. We didn't know 7 what was happening. 8 We assumed that it was some sort of 9 problem with the climatization to 120-plus degree 10 weather. Then in approximately about the 8th of May 11 and when I was leading a convoy back down to KKMC, I 12 became violently ill with a nausea, vomiting, and 13 diarrhea attack. I was admitted to the KKMC Saudi 14 Arabian military hospital, and I was an in-patient 15 there for approximately four days. 16 Since then it has been absolute insanity. 17 MRS. KAPPLAN: I would like to speak to 18 you a little bit about the problems that occurred when 19 my husband came home. He came home with numerous 20 symptoms which are annotated in the documentation that 21 we've given you. Some of the more memorable ones were 22 his bleeding gums, his shortness of breath, his 23 cardiac arrhythmias which caused him to be 24 hospitalized right after he came home to rule out a 25 heart attack. 147 1 At that time, they did rule out a heart 2 attack, and he had some esophageal studies done. He 3 was diagnosed with esophageal dismotility and went on 4 medication for that. 5 In December he was hospitalized for a GI 6 bleed, and he was medivaced to Walter Reed where he 7 spent three months. At that time they did an 8 extensive work-up, which showed lymphadenopathy, an 9 enlarged liver, an enlarged spleen, elevated liver 10 function tests, just numerous abnormalities of which 11 they could not provide a clear-cut medical diagnosis. 12 They did go ahead and repair his 13 esophageal sphincter which had a zero sphincter 14 pressure, put him on medication for his blood 15 pressure, and sent him on to his next duty assignment. 16 They have continued to follow him and 17 identify positive Q fever titres and other issues 18 outside of the context of the comprehensive clinical 19 evaluation program. 20 During the time frame immediately after 21 him coming home, I had a 16 month old daughter when he 22 deployed, 22 months old when he came home, who 23 developed gangrene, necrotizing fascitis, and toxic 24 shock syndrome. She has continued to have problems 25 over the last few years. She is six years old and 148 1 weighs 36 pounds. She has had a couple of endoscopies 2 and colonoscopies which document findings very similar 3 to what my husband has: esophagitis, gastritis, 4 chronic nonspecific inflammation in the colon. 5 When we were moved here to Fort Meade 6 where he retired from to participate in the 7 comprehensive clinical evaluation program at the 8 recommendation of the infectious disease doctors at 9 Walter Reed, I entered into the program for an 10 enlarged spleen and some other problems that I had had 11 off and on over a period of a couple of years. 12 At that time they diagnosed 13 lymphadenopathy, a polygamopathy, an elevated 14 sedimentation rate, a granuloma in my lung, just 15 numerous things, abnormal bone marrow, for which at 16 this time I have no medical diagnosis. I have no idea 17 what the causative agents are for my family's 18 problems. 19 The other thing that was very interesting 20 was after the onset of the air war, but prior to the 21 ground war, while we were in Germany, his bags came 22 home, and at that time they were soiled. They were 23 wet. They arrived very quickly. The children helped 24 me handle them, take them downstairs, wash them. 25 Within three weeks of his clothing coming home, we 149 1 were diagnosed with asthma, three of us out of five, 2 which was I thought kind of bizarre. 3 We have had continued hospitalizations and 4 issues that we have not been able to have addressed to 5 our satisfaction. I don't expect that they are going 6 to be able to give us a common diagnosis, but I did 7 expect a very comprehensive and objective evaluation. 8 These problems are occurring to veterans 9 throughout the country, and we do have some 10 recommendations to make to hopefully make things 11 better. 12 MR. KAPPLAN: In summing up, this really 13 is a financial issue because this is destroying 14 American families. You can't get medical insurance, 15 can't get life insurance, can't get supplemental 16 medical insurance for an unknown disease. Immediately 17 the insurance companies say, "Uninsurable. Thank you 18 very much. Here's your premium back." 19 Thank you. 20 CHAIR LASHOF: Thank you very much. 21 Are there questions from the panel? 22 MS. TAYLOR: Mr. Kapplan, while you were 23 stationed in Kuwait, did you notice, other than the 24 extreme heat, were there any other abnormal 25 environmental conditions to speak of, say, airborne 150 1 exposures from contaminants or anything of that sort 2 that you recognized? 3 MR. KAPPLAN: Within the 7th Corps and 3rd 4 Armored Division area during that time period, we were 5 basically southern Iraq, northern Kuwait, which was 6 the entire gambit of oil -- we had two major oil 7 fields that were still ablaze during that time period. 8 So environmentally we had that problem. We had crust 9 of the desert that wasn't kicked up since biblical 10 times we were told. So, you know, you have a lot of 11 track vehicles in an armored division that are tearing 12 up the neighborhood. So there's all kinds of 13 environmental things that were present during that 14 time period, yes, and animals devoid of insects, dead 15 animals. Excuse me. 16 It was the whole gamut, and that's all 17 presented in the written. 18 CHAIR LASHOF: Mr. Rios. 19 MR. RIOS: Mr. Kapplan, are you a disabled 20 veteran right now? Do you have a disability? 21 MR. KAPPLAN: I'm going underneath a C&P 22 evaluation, compensation and pension evaluation, with 23 the VA at this time. 24 MR. RIOS: So you have no determination at 25 this point? 151 1 MR. KAPPLAN: No. I'm in the middle of 2 the evaluation process. 3 MR. RIOS: And what do you think you were 4 exposed to or do you have any suspicions? What's your 5 theory? 6 MR. KAPPLAN: If somebody was going to do 7 everything, I was there. I really couldn't say. I 8 went through bunkers. I went through T-72 and T-50 9 and 60 series tanks as we were clearing the areas on 10 our last battlefields of the 7th Corps and 3rd Armored 11 Division. I couldn't say, but whatever it was, it was 12 low level. It was a very insidious sort of onset. 13 CHAIR LASHOF: Any other questions? 14 Sorry. Ms. Larson. 15 MS. LARSON: You said you were aware of 16 other veterans with similar symptoms and syndromes. 17 MR. KAPPLAN: Yes. 18 MS. LARSON: Do you have a sense among 19 those people that you know how many would you say? 20 MR. KAPPLAN: Well, within our brigade 21 there are approximately 5,500 to 6,000 folks, 22 depending on attachments on a particular day. I was 23 the log ops. officer, and I was responsible for taking 24 care of those folks. 25 Of my support operation cell, the guys, 152 1 the E-8s, the master sergeants, the guys that worked 2 for me, of those eight folks, two are medically 3 retired, one's still on active duty, two retired, and 4 all of them are in the CCEP. 5 CHAIR LASHOF: Yes, Dr. Baldeschwieler. 6 DR. BALDESCHWIELER: I wanted to just 7 confirm that I heard correctly. Did you say that you 8 had a Q fever titre? 9 MR. KAPPLAN: That's affirmative. I'm one 10 of those one or two that has a positive Q fever from 11 USAMRID, the Mayo Clinic, and has been reported to the 12 CDC. 13 CHAIR LASHOF: Thank you very much. 14 MR. KAPPLAN: Thank you. 15 CHAIR LASHOF: We appreciate your coming 16 forward. 17 CHAIR LASHOF: Mr. Steve Robertson. 18 MR. ROBERTSON: My name is Steve 19 Robertson. I'm the Legislative Director for the 20 American Legion and an ill Persian Gulf veteran. 21 Thank you for this opportunity for the 22 American Legion to participate in the first meeting of 23 this independent, unbiased committee assembled by the 24 President. 25 Since its inception, the American Legion 153 1 has actively worked on behalf of veterans and their 2 families. When Persian Gulf veterans initially turned 3 to the government with their health care problems, 4 they ran smack dab into the bureaucratic wall of rules 5 and regulations that turned them away. They next 6 turned to the veterans' advocate groups like the 7 American Legion. 8 Today the First Lady talked about the 9 heart wrenching stories that she and the President 10 have heard from the Persian Gulf veterans and their 11 families. I can tell you that the American Legion has 12 heard the same cries for help. 13 I can also tell you of the thousands of 14 phone calls that I have received from ill Persian Gulf 15 veterans, not one asking me, "How do I get 16 compensated?" Every one asked me, "How do I get 17 well?" 18 That is why the American Legion has 19 lobbied Congress for programs and benefits to address 20 the needs of these veterans and their families. 21 Congress has responded truly in a bipartisan nature, 22 but neither Congress nor the President can legislate 23 a diagnosis or a cure. 24 The American Legion greatly appreciates 25 the dedicated health care professionals who generally 154 1 are concerned about this issue and are working 2 aggressively trying to identify, treat, and cure the 3 medical problems of Persian Gulf veterans and their 4 families. 5 The American Legion understands the deep 6 frustration that everyone involved in this issue is 7 experiencing. This is not an issue of money. It's 8 not an issue of politics. It's not an issue of right 9 or wrong. It is an issue of healthy young men and 10 women who went to war and are now sick. 11 These veterans honestly believe that their 12 medical condition is a result of their service in the 13 Persian Gulf. The government says, "Prove that your 14 medical problems are a result of your service." The 15 veterans reply, "Prove that the medical problems are 16 not as a result of our service." 17 This is the same dialogue that went on 18 between the government and atomic veterans and Agent 19 Orange veterans and other veterans that have been 20 exposed to environmental hazards. The simple fact is 21 that if these symptoms existed prior to deployment, 22 none of these veterans would have gone to the Persian 23 Gulf. In fact, many of them have been discharged 24 because of these conditions. 25 To be declared deployable for 155 1 mobilization, you not only have to be healthy 2 physically. You have to be physically fit, and you 3 also have to be emotionally stable. Military 4 personnel must pass physical fitness training tests. 5 They also are randomly tested for drug use and are 6 also under the personal reliability program. 7 What is significant is all the impact that 8 happened to them while they were in the Persian Gulf, 9 everything from the inoculations and the medications 10 to the oil well fires, to living in unsanitary 11 conditions, to the possibility of biological and 12 chemical warfare; exposed to the burning landfills, 13 and the possibility of depleted uranium. These are 14 just a few of the problems. 15 The American Legion entrusts that this 16 committee will do a few things: validate that 17 credible research is being conducted; insist that 18 statistical data compares apples to apples, not some 19 diluted, irrelevant population. The American Legion 20 would like to see the data compare Persian Gulf 21 veterans to Persian Gulf era veterans, the ones that 22 did not go over to the Persian Gulf. Compare things 23 like the death rate, the rate of cancers, the birth 24 rate, miscarriages, medical discharges, administrative 25 discharges, denial of reenlistment due to various 156 1 medical problems. 2 We also hope that any evidence, whether 3 it's classified or unclassified, that might be an 4 explanation to the medical condition be revealed. 5 We need further research on the 6 inoculations and medications that were administered. 7 We would also like to see research on the oil well 8 fires and particularly focusing on the chemicals that 9 are used in the oil lines by chemical companies in the 10 oil field work. The studies that DOD did were six 11 months after the fires were started. 12 We also think that further research needs 13 to be done on the chemical and biological capabilities 14 of Iraq. A good start would be obtaining a list of 15 all agents that the United Nations inspection team 16 have identified, especially the ones that are missing, 17 and it is also important to determine the DOD's 18 capability to detect and protect us against those 19 agents. 20 Thank you for volunteering to accept this 21 tremendous challenge. The American Legion is prepared 22 to help this committee in any way possible. Please 23 remember through this entire process Gulf War veterans 24 are seeking nothing more than the truth, the whole 25 truth, and nothing but the truth. These veterans 157 1 answered the nation's call to arms. Now it's the 2 nation's turn to answer our call for help. 3 I ask that you read my entire testimony 4 which has been submitted to you. 5 Thank you very much. 6 CHAIR LASHOF: Thank you very much. 7 Are there any questions? Mr. Rios. 8 MR. RIOS: Has the American Legion taken 9 a formal position as to whether or not it agrees with 10 the government that there was no exposure to chemical 11 war agents? And do you have any documentation to 12 support your position? 13 MR. ROBERTSON: Absolutely not. The 14 American Legion still believes that there is viable 15 evidence that we were exposed to possible chemical and 16 biological agents. We have submitted in our testimony 17 the sources that we think that you should review that 18 includes Senator Reigle's reports that were submitted 19 and other data. 20 CHAIR LASHOF: Thank you. 21 Other questions? Dr. Hamburg. 22 DR. HAMBURG: You made a passing reference 23 to the U.N. technical team in Iraq. Would you expand 24 a bit more what you had in mind about what you'd like 25 us to get from them? 158 1 MR. ROBERTSON: Well, yes, sir. First of 2 all, they're doing an inspection to make sure that the 3 chemical and biological agents are accounted for, and 4 one thing that has recently come out in the media is 5 that there is a large quantity of missing biological 6 agents. It would seem to me that if we're running 7 into a brick wall and we can't figure out what's the 8 problem that it might be a pretty logical thing to 9 find out what's missing and try to identify it and see 10 if that's the things we're looking for, and to this 11 date no one has provided any kind of list that I've 12 seen of the biological and chemical capabilities, and 13 especially what's missing. 14 CHAIR LASHOF: Any other questions? 15 MR. ROBERTSON: May I just make one other 16 observation -- 17 CHAIR LASHOF: Yes. 18 MR. ROBERTSON: -- on a question that 19 asked earlier about outreach? 20 CHAIR LASHOF: Yes. 21 MR. ROBERTSON: The American Legion has 22 been doing its part to try to encourage veterans to 23 come forward, and we are constantly contacted by 24 active duty people that say, "I am afraid to come 25 forward because of jeopardizing my career," but the 159 1 comment that was made by the Department of Defense 2 where they said, "Well, we think we're doing a pretty 3 good job," I think they're doing a damned good job 4 being the DOD from the start of this thing that said 5 there were no active duty people that were sick and 6 now their registry has over 26,000 names on it. I 7 think they're doing a pretty good job of outreach with 8 those that have come forward. 9 The same thing with the VA registry. It 10 is well documented that there's over 40,000 names on 11 that list. So I think the outreach is working. 12 What we need is the evidence that's going 13 to encourage the troops that are not coming forward to 14 step forward and say, "I think I may be able to be 15 part of the solution." 16 CHAIR LASHOF: Do you have suggestions of 17 what it is that makes them fearful to come forward 18 since so many have come? What's worrying them and 19 what can we do to convince them that it's safe to come 20 forward? 21 MR. ROBERTSON: I think Major Kapplan made 22 a very good statement to me at lunch. He said that 23 his salary went from a major's salary to where he's 24 eligible for most substance assistance programs as a 25 retired major. Once you lose your job security, you 160 1 think about what happens when a guy gets discharged. 2 He loses his house. He loses health care for himself 3 and his family, and he loses half of his salary the 4 day that he is retired, or if he's discharged without 5 retirement, he loses all of his salary, as well as the 6 rest of those things. 7 Now, he's got to go out and look for a 8 job. When they ask him, "What's your health 9 condition?" what's he going to put on the application? 10 When insurance companies ask, "What's your medical 11 condition?" you're out there. 12 Now, to me that's pretty scary, and 13 fortunately I work for an organization that's going to 14 see this thing through thick and thin, and I have some 15 job security. So I can be an advocate for this issue. 16 CHAIR LASHOF: Thank you very much. 17 MR. ROBERTSON: Thank you. 18 CHAIR LASHOF: The Reverend Doctor Barry 19 Walker. 20 REV. WALKER: I want to thank you very 21 much for this opportunity to be here, the opportunity 22 to speak to you and this unbiased panel. 23 My name is Reverend Doctor Barry M. 24 Walker. I'm also chaplain, a lieutenant colonel, in 25 the United States Army and now Reserves. I want to 161 1 thank you for the opportunity to testify for the 2 veterans of Desert Shield and Desert Storm. 3 I am a disabled veteran of the Vietnam 4 era, as well as the Gulf War era. I first entered the 5 service in the Army in January of 1964, spent time on 6 active duty from 1966 through 1970, the era of Vietnam 7 and all of its related things. I was mobilized with 8 my Reserve unit in September of 1990 with the 475th 9 Quartermaster Unit, Petroleum. We are responsible for 10 theater bulk fuel and water that was handled for all 11 services. 12 As a chaplain, and as the senior chaplain 13 of 475th, I supervise four unit ministry teams which 14 include chaplains and we needed several more because 15 we were so large, in both Saudi Arabia and ultimately 16 in Iraq and in Kuwait. We had some 4,700-plus troops 17 under our command, which is made up of active duty, 18 active Army units, now activated Army Reserves and 19 National Guard. 20 I myself was very healthy. I did have a 21 slight blood pressure problem before I went over. I 22 had no health problems during the first few months 23 that I was there. On January 16th, I received the 24 first of two shots which was not told exactly what 25 they were. I'm an inquiring person, and I went and 162 1 did a lot of investigation and found out. 2 A lot of them do not have the records of 3 their shots. I have my record right here and my 4 assistant's record with me to show the records of A-1 5 and A-2. We were not told what A-1 and A-2 were. We 6 assumed after a period of time that A-1 was anthrax, 7 and that's what we were finally told. 8 We were also told the purpose of this show 9 was to protect us from the anthrax that possibly was 10 there. 11 Also, in January, after the first Scud 12 attack was launched, we were exactly told and ordered 13 -- not exactly told, but ordered -- to take the 14 pyridostigmine pills, though they were not told 15 exactly what they were for either, and even sometimes 16 you had to inquire to find out what the names were. 17 All we were told about these pills was they were to 18 protect us against chemical and biological weapons. 19 We were told to take the pills, given no choice. Some 20 troops were stood there and they watched them take 21 them. Other troops took them privately. 22 I later learned that they were 23 pyridostigmine, and I took my full dose of what I 24 needed, quote, unquote, to the Army there. To my 25 knowledge, none of my 4,700 troops except for the 163 1 commander and the headquarters were given any real 2 information as to the risk of that drug and its 3 vaccines that were there. We were not shown anything 4 in writing or told anything other than they were given 5 to protect us. 6 Our chemical officer was asked to find out 7 more about the pills. She shared the information with 8 the group commander and some of the staff members and 9 other commanders. She said the pills were of no 10 problem. 11 The fact that they were given the vaccine 12 in the drugs is not recorded in my official Army 13 medical record, nor in most of my units. I'm a 14 stubborn one. I had my yellow card and forced my 15 assistants to take it, and that's why we had it 16 recorded, and that took some persistence to get it 17 done. 18 I was a lieutenant colonel. The one 19 giving the things was a lieutenant, and I was a 20 chaplain, and it took some effect, and we finally got 21 it recorded, and those other troops of mine who came 22 over with the yellow shot books got it recorded even 23 though I had to fight for each one of them. 24 Our names were put on a list. The list, 25 we have no idea what happened to it. 164 1 A few of my people did get diarrhea from 2 the vaccines, but there was no major problems, as 3 such, at that time. After the pills were distributed, 4 more people got serious diarrhea, and they stopped 5 taking the pills. Even those who were not sick 6 stopped taking the pills because of the effects they 7 had on our fellow soldiers in combat. 8 Since the pills were taken in privacy in 9 my particular unit, it was thus possible to not take 10 them and not know about it. The fact that the people 11 got sick from taking the pills was not recorded in 12 their medical records. 13 I remember thinking that the vaccine, the 14 pills I was taking were causing me problems, although 15 I stopped taking the pills when I saw they seemed to 16 have a great effect on other people. However, around 17 this same time, which is around January after the air 18 war started, I began to have major problems with 19 respiratory and allergy problems, as I was told by the 20 medics that's what they were. I didn't pay much 21 attention because I didn't really have time to get 22 sick. I had a job to do. I was an officer, and I 23 kept going. 24 I started having problems with my back 25 after the February 25th of '91 Scud attack upon the 165 1 475th Quartermaster group, and one of my down-link 2 units, the 14th of Greensburg, PA. It was probably 3 from moving bodies, lifting debris, and so on, after 4 we were blow up. 5 The attack was horrible. Soldiers were 6 killed. Limbs were lost. One soldier's head was 7 partially blown off, and I had to grab one of my 8 soldiers who had carried her out and just hold him 9 because he literally went wild, and I can't blame him, 10 and afterwards my back injury was considerably bad. 11 I did go to the 85th Medivac Hospital for 12 treatment, and there I was told -- I told them I had 13 been moving bodies and cots and we put the bodies 14 sometimes on the cots to help get them out of the 15 warehouse where the Scud had hit, and they wrote it 16 down it was because of my moving cots on the line of 17 duty. 18 I also with the Scud attack lost some 19 hearing and have a ringing constantly in my ears. 20 We left the Persian Gulf at the end of 21 May. I was discharged again the 19th of June 1991. 22 I was so happy to get home I wasn't worried about 23 anything being wrong with me. I did go down as a 24 walk-in to the VA hospital in Pittsburgh on June 18th, 25 1991 because of the pain and injury to my back of 166 1 which I needed something to do. 2 It wasn't until later that summer when I 3 went to the Pittsburgh-Oakland VA for further 4 treatment that I realized that something else was 5 wrong. The VA doctor had arranged for an EMG, a CAT 6 scan, MRI, myelogram, and so on, to try to find out 7 just what was wrong. 8 With the EMG they found out that the 9 nerves from my waist down were not what they should 10 be, and my right leg was worse than my left. I now 11 have problems, including when I came up the stairs to 12 come in here. My right leg dragged and I fell down 13 and a couple of people came running, but I still have 14 that problem. 15 Because of my symptoms, I was also checked 16 for alcohol abuse. I have a case of beer which I 17 brought summer a year ago still in my refrigerator, 18 which is maybe half there, and most of it drunk by my 19 kids when they came in to visit. So you can see how 20 frequently I drink. 21 I also was checked for diabetes and other 22 causes, such as lead poisoning, but still nothing was 23 found. Now my symptoms include headaches, rashes, 24 constant fatigue, loss of memory, sweating, 25 respiratory, occasional urine in my blood. I'm unable 167 1 to concentrate like I used to. I have definite 2 problems sleeping and night sweats like you wouldn't 3 believe. 4 My mother came to visit about eight weeks 5 ago. She said she was doing some wash. I said, "Mom, 6 would you mind washing these pillows? You know, do 7 you have anything to put in?" as I gave her the 8 pillows. She said, "How come you have so much blood?" 9 Well, you cut yourselves sometimes when you're moving 10 and hitting things, and you really don't even know 11 what you're doing, and so I had blood on my pillows, 12 not much, but more than most people would ever think 13 about having. 14 My symptoms also I have occasional blood 15 in my urine. I have been evaluated at a two-week 16 study at the Washington, D.C. VA, and I'll tell you 17 what. That's probably the best thing that ever 18 happened to me. I was there because of an undiagnosed 19 cardiac problem. They know what's not wrong with me, 20 but they don't know what's wrong with me. 21 I am now taking l-e-v-o-d lepopa, which is 22 for nerve damage, which they will not accept or deny 23 is due to a nerve agent. Pardon me? 24 CHAIR LASHOF: Time. Can you finish up 25 quickly for us? 168 1 REV. WALKER: Okay. I have dealt with 2 over 300 veterans' families presumably in taking them 3 to hospitals and such, taking personally 300 in and 4 over 1,000 families. My question is: how long do I 5 have to live? 6 I've already had two close calls with the 7 heart. This is a progressive disease. The fear in 8 the community, the problems such that when a friend of 9 my daughter's husband at work's kids were infected and 10 she said, "Dad, please don't kiss your grandchildren. 11 Please don't be around them too much." 12 The fear is there. It's in the community. 13 I spend about one to two days a week being treated at 14 the VA hospital. 15 CHAIR LASHOF: We have your complete 16 testimony, and I promise you we will read it 17 thoroughly, but I'm afraid I must ask you to close. 18 REV. WALKER: Okay. 19 CHAIR LASHOF: I'll give you a couple more 20 seconds. 21 REV. WALKER: A couple more seconds? 22 Okay. 23 The American flag was fought for proudly, 24 and this is the one that was put on graves of those 25 who have died. Our government may be putting them on 169 1 my grave and many others well ahead of time, not in 2 vain, but the pride of those who survived and the 3 epithet of those who fell and who are still falling. 4 CHAIR LASHOF: Thank you very much. 5 REV. WALKER: Thank you for the 6 opportunity. 7 CHAIR LASHOF: We can take a few 8 questions. Any questions? 9 (No response.) 10 CHAIR LASHOF: Thank you very much. 11 Mr. Albert Donnay. 12 MR. DONNAY: Thank you, Dr. Lashof and 13 panel. I'm very pleased to be able to come and speak 14 to you today. 15 My name is Albert Donnay. I have a 16 background in environmental health engineering, a 17 Master's degree from the School of Hygiene and Public 18 Health at Johns Hopkins, and I've been a public health 19 researcher for the last 15 years. I work with a Dr. 20 Grace Ziem, who sees patients with multiple chemical 21 sensitivity disorders in her private practice and has 22 seen several Persian Gulf veterans. 23 We've been tracking the VA and DOD 24 response to these Persian Gulf veterans' problems for 25 the last two years. We've written six reports of one 170 1 form or another and submitted five to you in July and 2 the sixth you have in your packet today, and I'd ask 3 you to please take it out. It's entitled "Critique of 4 the DOD's Comprehensive Clinical Evaluation Program 5 for Gulf War Veterans," the report on their 10,200 6 participants. 7 Dr. Joseph said this morning that DOD will 8 eave no stone unturned, and I'm here to try to turn 9 over a few stones. Dr. Joseph told Congress, as has 10 been reported in the first three reports about the 11 CCEP -- he told Congress this is March -- that 84 12 percent of patients have a clear diagnosis or 13 diagnoses which explain their condition. Then he 14 said, quote, about 16 percent of patients with 15 completed evaluations have ill-defined symptoms that 16 are also commonly seen in civilian medical practice. 17 That was a theme he reiterated again today. The first 18 slide he showed you in his presentation, which was in 19 the handout, listed the primary diagnostic categories 20 for the conditions they've identified. 21 Our major criticism of this effort and 22 this public information is that it focuses completely 23 arbitrarily on the primary diagnosis of these 24 patients. As the DOD and the VA are the first to 25 admit, they have multiple overlapping illnesses and 171 1 symptoms. To focus on only the primary diagnosis is 2 to miss all of their other diagnoses, and these 3 patients have many diagnoses. 4 In response to our criticisms -- I hope it 5 was in response to our criticisms -- in this third 6 report they have for the first time given the overall 7 frequency of these diagnostic categories. However, 8 that's not in the handout. It wasn't in the slide. 9 It hasn't been in any of the materials presented to 10 the press, but as I show on the cover of our report, 11 it's on page 14 of the CCEP report. 12 In their table there on the frequency 13 distribution of the diagnoses, they include a second 14 column showing the diagnoses, what they call "any 15 diagnosis," meaning secondary, third, fourth, fifth, 16 sixth, et cetera, and they show that contrary to their 17 claim that only now 17 percent have ill-defined 18 conditions, the actual number is 41 percent. 19 As well, they've made a major focus of 20 their public information on the fact that 19 percent 21 have psychological conditions as their primary 22 category, and they suggested that most of the 23 illnesses may be due to stress or PTSD or some 24 combination of factors. 25 In actuality, that figure is 37 percent 172 1 overall, and third behind ill-defined conditions and 2 musculoskeletal. 3 The other issue I want to point out to you 4 has to do with the quality of the data in this 5 database. They did not tell you that they are only 6 collecting in their database the primary diagnoses and 7 the next six. They're not paying the contractor to 8 keypunch any more than that, and the keypunchers will 9 tell you if you call them up, which is how I found 10 out, that, indeed, many people have more than seven 11 diagnoses, and the rest are simply cut off. They're 12 not being entered into the database, and they can't be 13 evaluated. As we learned in public health school and 14 I think the rules haven't changed, if you're trying to 15 identify an ill-defined syndrome, you must look at the 16 totality of the symptoms and the diagnoses. 17 They speak of finding no pattern of 18 illness in these patients. There is no analysis in 19 the first, second, or third report of the pattern of 20 illness. All they present are the frequency 21 distributions of each individual symptom and each 22 individual diagnosis. 23 We don't know what the pattern is. 24 They're not telling us what the pattern is. Do they 25 have Symptoms A, B, and C or D, E, and F or X, Y, and 173 1 Z? And how do those combinations compare to the 2 civilian population? 3 They did include civilian population 4 controls in their slide you saw this morning. We 5 suggest as you did that there could be better control 6 groups. The CDC had a better control when they 7 published their study of the group in Pennsylvania, 8 and that data is not in the CCEP report. They focus 9 on the civilian data. 10 In the back of our report on page 5, we 11 include the CDC comparison in our comparison Table No. 12 2 to show you that when you do look at nondeployed 13 Persian Gulf veterans, their rates of reporting these 14 symptoms, fatigue, joint pains, headache, and sleep 15 disturbances, are one quarter to one half as great as 16 those that they allege are seen in the civilian 17 population. 18 They had this data. They're not 19 presenting it. I think it's being swept under the rug 20 and for the obvious reason that if 41 percent of these 21 people have ill-defined conditions, this is a much 22 bigger problem than they have admitted to date. 23 And lastly, I want to address the quality 24 control. There's a large problem with ICD codes to 25 diagnose medical conditions. There are a great many 174 1 options available to a physician today -- notice these 2 particular symptoms -- and there's been no guidance 3 from the DOD or the VA to help physicians use a 4 standardized set of codes for the standard symptoms 5 they're seeing. 6 And there's also a dilution factor of 7 including the healthy patients. In no study of a 8 syndrome would you include healthy patients. They 9 came into the CCEP and the VA registry for other 10 reasons, but they shouldn't be included in these 11 percent distributions. As is shown in our table, as 12 well, they say that 11 percent had a primary diagnosis 13 of healthy. Well, 19 percent have an overall 14 diagnosis of healthy. How can you have 19 percent who 15 are healthy in any diagnostic category, first, second, 16 or third, and 11 percent who are healthy in just their 17 primary? It's either 11 or 19, but either way, it's 18 a major dilution of their overall statistics. 19 CHAIR LASHOF: I'm afraid your time has 20 expired. 21 MR. DONNAY: Thank you. 22 CHAIR LASHOF: And we do have your full 23 document, and I assure you it will be reviewed. 24 Are there questions that the panel wishes 25 to address to Mr. Donnay? 175 1 Dr. Baldeschwieler. 2 DR. BALDESCHWIELER: Let me just ask on 3 the basis of your analysis is there any interesting or 4 potentially suggestive pattern? 5 MR. DONNAY: We have not been given and 6 they will not release any data on the pattern. 7 There's nothing in their reports about the pattern. 8 They only give the individual frequency of each 9 symptom, and there's no information on which symptoms 10 are occurring together, and that is what you would 11 need to define the syndrome, and that is simply not 12 being analyzed or presented. 13 I would have not received my degree if I 14 submitted a report like this, I'm afraid. 15 CHAIR LASHOF: Dr. Landrigan. 16 DR. LANDRIGAN: You mentioned the 17 possibility the DOD might offer guidance to physicians 18 on how to properly diagnose folks through ICD. Would 19 you elaborate on that? 20 MR. DONNAY: We've urged them to do that. 21 Dr. Ziem and other independent physicians met at a 22 meeting arranged by several Congressmen last year with 23 high level officials from both the CCEP and the VA 24 registry programs, and we urged them to work with us 25 to make some information available that would 176 1 standardize the way these symptoms were being 2 reported. They never got back to us. 3 They had a three-day meeting in Baltimore 4 on the VA side to inform their designated Persian Gulf 5 physicians how to handle these things, but the DOD has 6 done no similar effort that we're aware of, and the 7 worst thing is the coding. I mean we don't have all 8 the data. It stops at primary plus six, and these 9 patients have many more diagnoses than that, and they 10 have a specific instruction from the DOD to code 11 undiagnosed conditions last. So if anything is going 12 to get cut off at the end of a list, it's most likely 13 to be those undiagnosed conditions, and that they have 14 given an instruction for. That's to be coded 799.9. 15 CHAIR LASHOF: Ms. Larson. 16 MS. LARSON: I apologize. I'm not 17 familiar with MCS referral and resources. Could you 18 just tell us a little bit about it, who funds it and 19 what your mission is, in addition to the -- it's not 20 just the Gulf War? 21 MR. DONNAY: No, it's not just the Gulf 22 War veterans. The organization was founded by myself 23 and Dr. Ziem to address three areas of need in the MCS 24 community, multiple chemical sensitivity. We felt a 25 need to provide professional outreach to physicians 177 1 and other health care professionals who deal with MCS 2 patients and who are not aware of current research on 3 MCS. So we distribute a lot of peer reviewed 4 literature to them, and we did that also for the DOD 5 and the VA. 6 The second need is patient support. The 7 organization distributes Dr. Ziem's patient literature 8 to hundreds of patients who don't even get to go on 9 her waiting list. She sees patients from around the 10 country. 11 And the third area, public advocacy, 12 addresses issues of quality of science in MCS 13 research, and that is my main concern. I've been such 14 a watchdog of this effort. I see so many glaring 15 problems with the quality of the science. I can't 16 even call it "science." 17 We keep badgering them to do better. The 18 oversight committee specifically charged with this 19 responsibility, which you'll hear from tomorrow, what 20 they call the small committee, issued a first report 21 after just two of its members had been briefed by the 22 DOD. It said nothing about these problems. 23 Three reports have been issued since. 24 These problems continue in the reports, and the 25 oversight committee is apparently having no impact on 178 1 correcting them, but they and all of these other 2 committees have received all of our reports to date. 3 We've never even received an acknowledgement of any of 4 our reports. 5 CHAIR LASHOF: Yes. 6 MS. TAYLOR: I had one question about the 7 patients that you've seen. How many have actually 8 been Gulf War veterans or is there a number? And what 9 symptoms are you seeing? Are you seeing similar 10 symptoms? 11 MR. DONNAY: Dr. Ziem has seen less than 12 a dozen, and the reason she's stopped seeing more is 13 that two thirds of those were diagnosed as having 14 active mycoplasma incognitos infection, and given 15 that that condition is not yet necessarily treatable 16 or curable, she feels it's too great a risk to bring 17 those patients into her office to exposure herself and 18 other patients to that mycoplasma. 19 I don't know if you will receive reports 20 today about that or not, but these patients were 21 tested by Dr. Nicholson in Texas as part of his 22 current research program into mycoplasma incognitos. 23 We think that there's a variety of problems in these 24 patients, not just MCS, but MCS is a critical symptom, 25 and it's a symptom that's not being tracked. It's 179 1 simply not being coded. 2 You mentioned our funding, Dr. Larson, and 3 I should say that we have very little funding. I'm 4 unpaid. We have an office manager who's paid by funds 5 we've raised from our research fees and our 6 publications. We are a nonprofit organization, but 7 without any substantial funding of any kind. 8 CHAIR LASHOF: Thank you very much, Mr. 9 Donnay. 10 MR. DONNAY: Thank you. 11 CHAIR LASHOF: Gina Whitcomb. 12 MS. WHITCOMB: Good afternoon. My name is 13 Gina Whitcomb. I'm a Public Affairs Officer for the 14 Desert Storm Justice Foundation. We are a charitable 15 organization formed to help the Gulf War veterans. 16 There are tens of thousands of those 17 veterans that deployed that are now battling for the 18 proper and adequate health care that they need to 19 resolve their serious health issues, and that's what 20 I'm here to address today because Secretary Brown 21 announced many good programs that are begin trying to 22 be put out there, and it's not happening. It's not 23 happening in Oklahoma City where I'm from. It's not 24 happening in a lot of hospitals as I talk to veterans 25 all over the nation. 180 1 I have brought today and attached a sample 2 of our database that we have established from 3 testimonies that we have received from these veterans. 4 As a definitive insight regarding comprehensive Gulf 5 War health issues, these reports are anonymous due to 6 our membership, spanning all services from the lowest 7 ranks to the highest ranking officers, both active 8 duty and the Reserve components. 9 A brief review of this data reveals that 10 these reports are coming from all over the nation, 11 from small towns to large cities. This indicates the 12 seriousness that you just apply in your work on these 13 issues as requested by the President of the United 14 States. 15 The enclosed evidence from the DSGF 16 database outlines the following: a symptom check 17 list, when the veteran first realized the problem and 18 on the scale of one to ten a severity of the problems 19 at that time. We find the severities are increasing 20 as time goes by. 21 It is interesting to note that many of the 22 so-called undiagnosed illnesses correlate to the very 23 symptoms most troubling to our veterans. We 24 recognized that very early in our data collection. 25 Yet it took the VA until late 1994 to recognize this 181 1 by crafting legislation known as the Veterans' Persian 2 Gulf Benefits Act of 1994. 3 Many service members still on active duty 4 after the Gulf War are being diagnosed after reporting 5 the same symptoms as many who are no longer on active 6 duty. We believe this is a way to remove those 7 service members from active duty on an ongoing 8 reduction in forces. They are the lucky ones in that 9 their service connected will be well documented. 10 Those released from active duty soon after 11 the war do not have that same luxury. Many must now 12 fight to obtain the bottles of aspirin being 13 prescribed for migraine headaches or the Motrin which 14 slightly eases the pain enough till our veterans use 15 their arms to cover a crying baby. 16 Again, this same group of people are 17 reporting the same symptoms. Yet only the veterans 18 still on active duty are generally being diagnosed and 19 for discharge. 20 To assist in such problem solving, the 21 Desert Storm Justice Foundation has formed a working 22 group with the Oklahoma City VA Medical Center. The 23 members of that include the Chief of Staff, Chief of 24 Ambulatory Care, the Persian Gulf Environmental 25 Physician, the Persian Gulf Hospital Coordinator, and 182 1 the officers of DSJF. 2 While this has been helpful in resolving 3 small issues, we have determined that many major 4 issues go completely unaddressed to the very poor 5 communication at all levels of the VA. Primarily the 6 Chief of Staff and his colleagues lack knowledge of 7 the comprehensive clinical evaluation protocol many 8 months after its inception. We had to take this 9 information to them ourselves. 10 We have further determined that many 11 programs and issues are not being communicated and 12 studies are not taking place or being disseminated. 13 Because the VA's Persian Gulf review newsletter is 14 issued so sporadically, the information may not be 15 accurate or timely, but that is no excuse for the lack 16 of implementation of major programs mentioned in the 17 Persian Gulf review. 18 Ironically after recently going to great 19 lengths to gather information on specific testing, we 20 were told not to disclose this to our members. A 21 direct quote from Dr. D. Robert McCaffery, Chief of 22 Staff, Oklahoma City VA Medical Center: "so we don't 23 have to test every Tom, Dick, and Harry." 24 Other problems as evidenced over and over 25 in the enclosed testimonies are lack of timely 183 1 scheduling of appointments, long waits to see doctors 2 at scheduled appointments, apathy, and hurried 3 examinations from doctors, lack of documenting 4 symptoms in the patient's file, long waits for follow- 5 up appointments. I'm talking months. I'm talking of 6 one gentleman that waited eight months to have a 7 follow-up to a cardiac problem that had had three 8 abnormal EKGs. 9 Misplacing of records and files 10 continuously; lack of communications to patients 11 regarding their results. One example of receiving 12 negligent health care through the VA is the case of a 13 22 year old man, a former combat engineer, 82nd 14 Airborne, now in a wheelchair. He is unable to 15 receive follow-up appointments at his local VA 16 hospital until his medical file is returned from the 17 Special Gulf Referral Center in California. He 18 returned there from May and still has not received 19 results from the testing. 20 After complaining over a year at the 21 Oklahoma City VA Hospital to no avail about a bladder 22 condition, he had to undergo bladder surgery at the 23 Special Referral Center in Houston. Upon returning 24 from Houston to Oklahoma City, the doctor there 25 questioned his wheelchair use and diagnosis from 184 1 Houston. After he explained, the doctor said, "Oh, 2 don't listen to those doctors in Houston. They don't 3 know what they're talking about." 4 Another doctor, without even glancing at 5 his medical file, told him he had tendinitis from 6 over-use of his joints. This, after having to walk 7 with a cane for three years and in a wheelchair for 8 almost a year. 9 Although non-VA physicians have given him 10 medical diagnosis, the VA hospitals continue to focus 11 on depression and post-traumatic stress disorder. 12 What young man wouldn't suffer from depression over 13 the loss of his health? However, the depression is 14 not the cause of his pain and illness. 15 After his medical discharge, this young 16 man whose IQ previously tested at 137 has had several 17 psychological testings. They reveal that his IQ is 18 steadily dropping as his illness continues from 126 in 19 1992 to 112 in 1994, to the present rating of 92. 20 From 137 to 92, that's a 67 percent drop. This has 21 been explained by a brain scan expert as neurotoxic 22 damage. 23 This is my son that I just explained. 24 This is his picture before, when he was tall and 25 straight and healthy. This is his picture now as he 185 1 sits in his wheelchair, as he walks short distances 2 with his cane. 3 The submitted testimonies tell the same 4 story over and over from every corner of this country. 5 The priority health care veterans receive in VA 6 hospitals would never be tolerated in the private 7 sector. The filth that has been reported to me in the 8 patient's room in VA hospitals would never be 9 tolerated in private sectors. I have observed this 10 first hand. 11 Why are veterans, the very citizens who 12 serve our nation in time of war, treated worse than 13 second class citizens? The time has arrived and the 14 time is now to change this inequitable treatment. 15 I thank you very much. 16 CHAIR LASHOF: Thank you. 17 (Applause.) 18 CHAIR LASHOF: Open for questions from the 19 panel. Anyone? 20 (No response.) 21 CHAIR LASHOF: Thank you very much. We 22 appreciate your -- 23 MS. WHITCOMB: Okay. I'd like to take 24 this opportunity to invite the press and the panel to 25 a reception following this in the Ohio Room that is 186 1 being sponsored by the Desert Storm Justice Foundation 2 and the audience in whole. 3 Thank you. 4 CHAIR LASHOF: Thank you. 5 Captain Julia Dyckman. 6 CAPT. DYCKMAN: I'd like to exchange my 7 time with Jim Tuite. I will take his time at 4:30 if 8 that is all right. 9 CHAIR LASHOF: Okay. Jim Tuite; is that 10 correct? 11 MR. TUITE: Yes, Madame Chairman. 12 CHAIR LASHOF: The 4:30 time. Okay. 13 MR. TUITE: During the 103rd Congress, the 14 Senate Banking Committee investigated U.S. export 15 policies that contributed to Iraqi chemical, 16 biological, and nuclear weapons development programs. 17 One aspect of the investigation focused on the health 18 consequences of the Gulf War. I directed that 19 investigation. 20 In September 1993, former Senator Donald 21 Reigle reported the findings of the preliminary study 22 on the Senate floor. Shortly after the release of 23 that report, the Department of Defense took the 24 position that there were no confirmed detections of 25 chemical or biological agents in theater, and that no 187 1 chemical or biological munitions were discovered south 2 of the Euphrates River. 3 Secretaries Perry, Brown, and Shalala 4 assured the committee in writing on May 4th, 1994, 5 that there was no classified information that would 6 indicate any exposures to or detections of chemical or 7 biological agents during the war. This statement was 8 expanded on May 25th, 1994, when Secretary Perry and 9 General Shalikashvili wrote that there is no 10 information classified or unclassified that indicates 11 that chemical or biological agents were used in the 12 Persian Gulf. 13 CIA Director Deutsch has repeatedly said 14 that there is no convincing evidence of widespread 15 use. 16 While we may debate that there are some 17 loopholes in these statements, clearly the message 18 that they are selling is that there is no evidence 19 that the troops were exposed, and this is absolutely 20 false. 21 The committee uncovered documentation that 22 U.S. firms provided anthrax, clostridium, botulinum, 23 and nearly all of the other pathogenic materials 24 discovered in the Iraqi biological warfare program. 25 In February 1994, the committee briefed a Defense 188 1 Science Board task force on these findings. Later it 2 was learned that the task force director, Dr. Joshua 3 Lederberg, according to corporate reports, was serving 4 on the board of directors of one of the principal 5 suppliers of these pathogens to Iraq. 6 In some cases, these exports, all licensed 7 by the U.S. Department of Commerce, were shipped 8 directly to facilities believed to be involved in the 9 Iraqi biological warfare program. 10 In March 1994, the committee requested all 11 classified and unclassified material related to 12 possible chemical, biological, or radiological 13 detections, exposures, or munitions. The requested 14 documents were never received by the committee, but 15 through a series of confidential contacts throughout 16 the military and intelligence communities, materials 17 were received that confirmed that DOD was withholding 18 substantial information. 19 In January 1995, DOD released CENCOM logs 20 that confirmed reports of chemical agent detections, 21 but these log entries corroborate many of the 22 incidents reported by the veterans. 23 Other DOD documents confirm that Czech 24 units reported multiple chemical agent detections 25 using biochemical nerve agent alarms that detected 189 1 cholinesterase reactivity, and that these detections 2 were confirmed using another biochemical 3 cholinesterase reactive test and that the specific 4 nerve agent was identified in a laboratory using a 5 series of wet chemistry tests, technology unavailable 6 to U.S. forces. 7 How these agents got there really doesn't 8 matter. Cholinesterase was being affected. 9 Further, on January 23rd, 1991, the CENCOM 10 logs show that a directive was issued to disregard any 11 reports coming from the Czechs. 12 Marine Corps documents reveal the 13 discovery of dusty mustard during the ground war. 14 Recently declassified documents reveal that Iraq used 15 these types of chemicals in the Iran-Iraq war; that 16 the U.S. protective over-garments under certain 17 conditions are vulnerable to these agents; and that 18 U.S. chemical agent detectors do not readily identify 19 them. 20 This, in my opinion, is information that 21 should never have been declassified. It gratuitously 22 exposes a vulnerability of equipment still in use. 23 Other documents reveal that units repeatedly detected 24 both nerve and blister agent in both the 1st and 2nd 25 Marine Division area of operations. 190 1 The 1st Marine Division also reported the 2 discovery of chemical weapons munitions bunker in an 3 area designated as the 3rd Iraqi Armor Ammo Supply 4 Point just outside of Kuwait City. The bunker tested 5 positive for mustard agent, using the GC mass 6 spectrometer on the Fox vehicle. The crates and 7 munitions were marked with skulls and crossbones. 8 Recently declassified documents confirm 9 that Iraq marked their chemical weapons with skulls 10 and crossbones. 11 The committee investigation and follow-on 12 independent investigation confirmed that in several 13 cases U.S. soldiers found munitions with skulls and 14 crossbone markings; that these materials tested 15 positive for chemical warfare agents with the GC mass 16 spec. on the Fox vehicle; and that the soldiers who 17 were present were injured or are now sick. 18 On numerous occasions during the air and 19 ground war, U.S. chemical specialists detected and 20 confirmed chemical agents in the field. They were 21 told to run repeated tests until the results were 22 negative, proper procedure to assure the passing of 23 the threat, but the findings were recorded as a 24 negative test. 25 Official documents also confirmed that 191 1 anthrax was detected after a Scud attack, but these 2 findings were also later discounted. Prior to and 3 during the war, U.S. commanders were warned of the 4 impact of bombing of chemical weapons facilities and 5 storage depots by the National Laboratories. The 6 commander of the Soviet Chemical Forces, French, 7 Czech, and U.S. commanders publicly commented that 8 there were traces of neurotoxins being detected as a 9 result of the bombing of chemical agents facilities. 10 The fact is, according to Army safety 11 standards, the levels detectable by the sensors 12 deployed are hundreds and even thousands of times 13 higher than the levels believed to be safe in 14 sustained or chronic exposures and require the use of 15 protective equipment. This is all confirmed in 16 official documentation received directly from the 17 United States government. 18 DOD asserts that there are different 19 illnesses with overlapping symptoms, whatever that 20 means. Further, they say that most have been 21 diagnosed. Yet the etiology of the diagnosis remains 22 unknown in many of these cases. Their own statistics 23 reveal that 41 percent of the veterans still have 24 undiagnosed symptoms, albeit with a primary diagnosis. 25 Very few of these veterans have received 192 1 sophisticated toxicological, biological, and 2 neurological tests necessary to identify the effects 3 of these types of exposures, despite a striking 4 similarity between the symptoms and the effects of 5 these types of exposures as reported in much of the 6 relevant medical literature. 7 Our veterans and their families have 8 traveled here to describe their illnesses and relate 9 their experiences. Most, if not all, have traveled 10 here at their own expenses. You are the fifth 11 independent panel that they have come to explain their 12 problems to. They have also come to Washington 13 testify before Congress on several occasions. 14 Two of the previous panels, the Defense 15 Science Board Task Force and the Institute of Medicine 16 study, both relied on individuals who were deeply 17 involved in the defense and intelligence process to 18 conduct a review of chemical and biological warfare 19 related exposures, and the material they received was 20 regulated by the Department of Defense. 21 I have come here to tell you today 22 publicly and with definite knowledge, our veterans and 23 the U.S. Congress have been repeatedly lied to by the 24 Department of Defense. These veterans sit here before 25 you today as if in a civil court where the government 193 1 is the defendant, the judge, the investigator and has 2 hand-picked the jury. Certainly if you have any doubt 3 as to the nature and causes of their illness, you must 4 recommend favorably on their behalf. 5 I ask that the commission permit me to 6 provide at a later date either in public or private a 7 complete briefing related to the substance of this 8 statement. 9 The full text of this statement and all 10 supporting documentation is being submitted for 11 inclusion in the record. 12 CHAIR LASHOF: Thank you very much. I 13 assure you we will be in touch, and we will review all 14 of the documentation you've given us and we'll follow 15 up to get additional documentation. 16 MR. TUITE: Thank you. 17 CHAIR LASHOF: Are there other questions 18 that the panel wishes to address to Mr. Dyckman at 19 this time. 20 MR. TUITE: I'm Tuite. 21 CHAIR LASHOF: Sorry. Yeah, we switched. 22 (No response.) 23 MR. TUITE: Thank you. 24 CHAIR LASHOF: If not, thank you very 25 much. 194 1 The next person who was scheduled to 2 speak, Wendy Wendler, is going to submit her 3 testimony, but is not able to speak. 4 MS. WENDLER: I had ask that my time be 5 given to the only active duty officer here today. 6 (Inaudible) refused to let me do that, but Captain 7 Hamden is here and would like to take my (inaudible) 8 and my statement if you will let him. 9 CHAIR LASHOF: Oh, very well. 10 MS. WENDLER: We would really appreciate 11 it. 12 CHAIR LASHOF: All right. 13 MS. WENDLER: Thank you. 14 CAPT. HAMDEN: Good afternoon. My name is 15 Captain Charles Hamden, and I do hope that General 16 Franks is feeling better. 17 The Persian Gulf War was the largest 18 opportunity for manufacturers of military hardware to 19 showcase their latest models, and it was also an 20 opportunity for the military medical community to try 21 its new arsenal of preventive inoculations and 22 chemical precursors. 23 But unknown to those that were part of 24 this experiment were the lasting side effects that we 25 would suffer. Steve Robertson, the Legislative 195 1 Director of the American Legion, said in an interview 2 on public radio, along with Dr. Stephen Joseph, that 3 he did not consider Gulf War vets to be used as guinea 4 pigs. The fact of the matter is that we were human 5 guinea pigs. 6 Four years after the war ended, the 7 Department of Defense position searched for an answer 8 for Gulf War Syndrome. They have looked at sand 9 fleas, oil well fires, environmental hazards, and 10 others looking for a silver bullet. All of these 11 factors were present, but no one has begun to look at 12 the vaccines as the cause of the maladies that 13 veterans and their families suffer from. 14 The comprehensive clinical evaluation 15 program, a series of tests being administered for the 16 cause of this illness, have been evaluated by civilian 17 physicians as being superficial and limited. It would 18 seem that if you know what you're looking for, you 19 would know what tests not to run, and with the 20 scientific research being done by Drs. Garth and Nancy 21 Nicholson, they wouldn't know where to look. 22 The Nicholsons have isolated a 23 microbacterium called mycoplasma incognitos. That is 24 communicable between humans and should be considered 25 moderately infectious. This finding contradicts the 196 1 Veterans' Administration's claim that there is no 2 evidence of transmissibility. 3 This mycoplasma is being spread among 4 family members and causes clusters just like chronic 5 fatigue syndrome. Unfortunately, the antibiotic 6 treatment that they recommend is only a treatment for 7 as now there is no cure. The question that the 8 Department of Defense needs to answer is: where did 9 this mycoplasma come from and was it in vaccines? 10 Dr. Chi Lowe of the Armed Forces Institute 11 of Pathology has stated that this mycoplasma is also 12 found in chronic fatigue syndrome patients and AIDS 13 patients. Dr. Lowe has gone on record to say that 14 this mycoplasma could cause death on its own. Based 15 on Drs. Nicholson and Dr. Lowe's finding, we are 16 suffering from a non-HIV autoimmune deficiency 17 syndrome or non-HIV/AIDS. 18 The government has claimed that no 19 chemicals were used in the gulf. That may be true to 20 a certain extent, but they gave it to the soldiers via 21 pyridostigmine bromide pills. Senator Jay Rockefeller 22 in the Senate Veterans' Affairs report dated December 23 8, 1994, stated that pyridostigmine is a nerve agent 24 itself and in conjunction with Deet pesticide makes 25 the Deet seven times more toxic. 197 1 So it doesn't matter if the chemicals are 2 deployed in the gulf, our leaders chemically altered 3 the soldiers themselves. 4 The injections of anthrax and botulism 5 that the soldiers received were given investigational 6 status and were given to soldiers with no warning of 7 possible side effects. When I received my 8 inoculations, I was told what the shot was, but did 9 not receive any information concerning the vaccine, 10 and it has not and will not be transcribed in my 11 medical records. 12 These vaccines have no history of human 13 testing and were not FDA approved and should not have 14 been used on soldiers. By the Defense Department 15 saying that they were necessary to protect the 16 soldiers in case of exposure, it takes responsibility 17 off those individuals that approved their use. These 18 bureaucrats made a decision based on so-called 19 military intelligence from other officers, and now the 20 soldiers they were protecting are suffering. 21 Everyone is avoiding the fact that the 22 vaccines were tainted. During Operation Desert Storm, 23 Pentagon officials had to supplement sources of 24 vaccines with experimental drugs produced by the 25 British and Japanese. These companies are not 198 1 regulated by the FDA and are not subject to their 2 convoluted approval guidelines. Whether the vaccines 3 are made in the United States or in other countries, 4 the soldiers were guinea pigs, part of a sick 5 experiment. 6 Even the federal court system has thrown 7 soldiers and their freedom against involuntary 8 participation in medical experiments out. In early 9 1991, Public Citizen filed a federal suit, John and 10 Jane Doe v. Secretaries Chaney and Sullivan, to block 11 the government from using GIs as unwilling guinea pigs 12 to experiment with, untested and unproven vaccines to 13 allegedly protect the soldiers against certain bio 14 warfare agents. 15 Also the military has a record of using 16 unapproved and delicensed vaccines on soldiers. An 17 example, as late as 1982, soldiers were still 18 receiving adenoviruses vaccines delicensed by the FDA 19 in 1963. 20 My family as well as thousands of others 21 are sick. They are suffering mental, physical, and 22 financial hardship while our leaders decide which lie 23 to tell next. Soldiers throughout the years have 24 suffered at the hands of the governments, and when 25 will it stop? It is time for our leaders to take a 199 1 stand and tell the truth and support our veterans 2 through actions, not rhetoric. 3 CHAIR LASHOF: Thank you very much. You 4 are -- 5 (Applause.) 6 CHAIR LASHOF: I would ask the audience to 7 hold applause. It only takes up our time. 8 You're Captain Charles Hamden? 9 CAPT. HAMDEN: Yes, ma'am. 10 CHAIR LASHOF: Is that correct? You were 11 on the schedule for 4:20 this afternoon. I don't know 12 where the mix-up in information was. So, Wendy 13 Wendler, if you would like to testify this afternoon 14 at 4:20 in Captain Hamden's spot, you may do so and 15 we'll get both of you because we had both of you on 16 the schedule. 17 Are there questions for Captain Hamden? 18 Dr. Baldeschwieler? 19 DR. BALDESCHWIELER: Can you tell me 20 anything more about the mycoplasma incognitos? 21 CAPT. HAMDEN: The research that Drs. 22 Garth and Nancy Nicholson have done, what they do is 23 they do forensic PCR and gene tracking to go within 24 the white blood cells, the leukocytes, to find the 25 mycoplasma that has imbedded itself within the cell 200 1 structure and the nucleus. So the Nicholsons have 2 done extensive work with that. 3 MS. TAYLOR: Do they have any kind of 4 scientific reports yet on what they've found? They do 5 have something? 6 CAPT. HAMDEN: They have preliminary 7 reports out. Dr. Garth Nicholson had spoken to 8 officials of the VA and DOD a week ago last Friday 9 about some of the work that he's doing. Dr. Mather 10 and Dr. Murphy were there. They might be able to give 11 you more information on his speech, and also Dr. Lowe 12 was there. 13 CHAIR LASHOF: I'm sure we'll be able to 14 get that information. 15 Dr. Caplan. 16 DR. CAPLAN: Do you know if there are any 17 samples of lots of the vaccines still in existence? 18 CAPT. HAMDEN: I'm not sure if there are 19 anthrax and the botulism were gone. We also received 20 gamma globulin shots. When the soldiers were 21 preparing to go to Saudi Arabia the second time, they 22 had run out of gamma globulin shots, but one thing 23 that they also did with the soldiers going there, they 24 gave doxycycline as a prophylactic measure, and they 25 did not receive some of the shots. 201 1 Another thing that the problem is having, 2 people that were prepared for deployment for Desert 3 Storm received the shots but did not go. They're also 4 suffering the same maladies that the people who were 5 in theater. 6 CHAIR LASHOF: Dr. Landrigan? 7 DR. LANDRIGAN: Captain, you said your 8 vaccines were never recorded on your medical record 9 and never would be. What do you mean by that? 10 CAPT. HAMDEN: When we got our vaccines, 11 we got our botulism vaccine approximately one month 12 before the ground war started. We got our anthrax 13 injection February 23rd. We signed our name on a 14 yellow piece of legal paper, have never seen it in my 15 medical records. That piece of paper is probably 16 sitting in the desert somewhere in Iraq right now for 17 all I know. They have never been recorded. 18 The people that I've seen that were in my 19 unit in the 101st Airborne Division, theirs have never 20 been recorded either. 21 CHAIR LASHOF: Further questions? Yes. 22 MS. KNOX: Just for the record, I would 23 like to say that I received anthrax vaccine as well, 24 and I wanted to see for myself whether or not it was 25 in my medical record, and it is not recorded. 202 1 CHAIR LASHOF: It is not. Okay. Thank 2 you very, very much. 3 CAPT. HAMDEN: Thank you. 4 CHAIR LASHOF: We're just on time and 5 ready for a break. We will resume again promptly at 6 3:30. 7 (Whereupon, a short recess was taken.) 8 CHAIR LASHOF: Can I ask everyone to take 9 their seats, including my committee? 10 I think we'll resume. Major Richard 11 Haines. 12 MAJ. HAINES: I'm getting you a flier, my 13 report to the White House. I trust that you received 14 this. 15 My name is Richard Haines, President of 16 Gulf Veterans International. We became involved about 17 three years ago when a lot of this started. We were 18 the first to amass national statistics on symptoms 19 from different units, on different exposures, provided 20 reports to the National Academy of Sciences that was 21 shocked at the number and different types of 22 exposures, and I'm going to talk a little bit about 23 leaded fuels and the benzenes because some of the 24 other toxics have been covered here so far. 25 We finished a state-wide meeting in 203 1 Michigan this weekend. So I got here a little late 2 this morning, and when I was in Michigan, I was 3 reminded of a great governor we had, George Romney, 4 who made a little off-the-cuff remark on the way back 5 from a flight from Vietnam that maybe we had been 6 brainwashed, and it was just a little off-the-cuff 7 thing. He didn't think it would get out, and what 8 happened was that remark, that idea was so colossal, 9 so comprehensive, so significant, economically, 10 politically, socially, and morally, that it was 11 unthinkable that such a thing, such a colossal 12 misrepresentation might have been made. 13 And Kingston Smith, the veterans' counsel 14 in the Senate, said to me, "Why would the government 15 lie? What reason would they have to do that?" 16 So as this issue has continued and the 17 letter we sent to the command, the 123rd ARCOM three 18 years ago to explain how this illness seemed to fit 19 one predominant illness, some might call it chronic 20 fatigue syndrome, an immune dysfunction; some might 21 call it multiple chemical sensitivity. They just 22 said, "Thank you, Major Haines." So I decided if you 23 want a battle, you've got the right man. 24 So after three years and about $100,000 of 25 my own time and effort, we collected about 1,000 hours 204 1 of interview information around the country, and the 2 first thing we noticed was the multiple systems nature 3 of this illness, a characteristic that was, in fact, 4 noticed in the early 1950s when this multiple systems 5 disorder was first observed, and there was a common 6 theme in it, and it was when a person is reexposed to 7 those incitants to which he has recently acquired 8 sensitivities or allergies, that he would react. His 9 brain waves change. Sometimes they have 10 lightheadedness, sudden joint ache, face puffiness, 11 restrictive airway. 12 The recent unification conference that met 13 in Dallas where they're in a treated room and made 14 them keel over. Four of them had to be taken to 15 emergency. 16 The Yellow Ribbon Committee that met two 17 weeks ago here in Washington had some kind of pool 18 chemical, I guess, that had been recently used, and 19 they had a major problem. 20 The single characteristic, the single 21 distinguishing characteristic about this illness and 22 with all these vets, and all you have to do is ask 23 them and I hope you will talk to at least ten vets and 24 take them through a quality symptoms check list 25 because they've got brain damage, and the tests prove 205 1 that with spec. scans, to help them jiggle their 2 memory about all their symptoms. 3 It appeared on me on Channel 4 in Battle 4 Creek on Friday. Mike Lawrence, 57 symptoms, and what 5 is VA getting him? Motrin for 57 symptoms, and this 6 is what's happening all over this country, and this is 7 what these people are doing to these vets, and the 8 spouses are almost as bad. 9 And this report I just gave out to you 10 spells out a linear progression and a logic as to how 11 and why the spouses are sick, and I'll get back to 12 that in a moment. 13 I testified before the Science Board at 14 the Pentagon with Josh Lederberg. Dr. Lederberg said, 15 "I think these allergies are imagined. I don't think 16 that these are real," because he's testified against 17 chemical victims for years. He's written articles. 18 He said, "I think they're just imagined." 19 Well, I'd like you to explain to me how a 20 group that can stand in front of 1,000 tanks at 21 gunpoint are suddenly queasy and nervous about some 22 few micro parts per million or billion of Pinesol or 23 Clorox bleach or fragrances and all of the things that 24 they have become reactive to, because different ones 25 may react to different toxics, incitants as we call them. 206 1 But whenever you administer or ingest or 2 expose them to the one that they are reactant to, they 3 will have the same symptoms, and that's the constant 4 in this illness, and that's the question to home in 5 on. 6 But those are the types of tests which are 7 validated with sublingual types of tests, with 8 pinprick tests, with blood tests using the ALCAT 9 computer that can test chemical and food reactivity, 10 tests that this group, VA and DOD, will not do, but 11 which they have known about. They could clinically 12 validate it. They won't do it. They could have; they 13 haven't. All kinds of tests. 14 Much of the tests that have been done, the 15 diagnostics, all over this country have come from the 16 private sector and groups that have pitched in and 17 tried to help. Dr. Ruth McGill and I, she's from San 18 Angelo, Texas, multimillionaire, environmentally 19 sensitive, retired disabled psychiatrist, did liver 20 function tests. Nineteen of the 21 were abnormal. 21 CHAIR LASHOF: I'm sorry. You've gone 22 over your time. I will give you another 20 seconds to 23 finish up. 24 MAJ. HAINES: Okay. 25 CHAIR LASHOF: And we'll have your written 207 1 testimony. 2 MAJ. HAINES: I was up at Walter Reed, and 3 on his death bed was Victor Ramis, dying from 4 pancreatic cancer, and he and his mother and I took a 5 hair sample off him. We had it tested, and he was 6 loaded up with lead, and the military found a lot of 7 lead in some of their autopsied soldiers. 8 The 1173rd National Guard Unit from 9 Michigan, transportation company, found lead in almost 10 half of those tested of about 30, and maybe some of 11 these people call it overlapping symptoms. I call it 12 medical murder. 13 Over 4,000 have died, and you should 14 demand to get the list of the 4,000 that have died 15 looking not just at the cause of death, but the 16 illness they had before the death because they are 17 dying of bizarre cancers, the most bizarre cancers 18 their doctors say they have ever seen in their medical 19 career. 20 So I encourage this committee to look at 21 these things and dig into this and to understand 22 multiple chemical sensitivity, to use good symptoms 23 questionnaires and exposures questionnaires, and to 24 understand this illness. 25 Thank you. 208 1 CHAIR LASHOF: Thank you. 2 Are there questions the panel has for 3 Major Haines? 4 (No response.) 5 CHAIR LASHOF: All right. We'll move on 6 to -- thank you very much -- Betty Zuspann. Wait a 7 minute. There's a change. Go for Veterans of the 8 Carolinas. Is there someone here to speak on behalf 9 of the Go for Veterans of the Carolinas? Thank you. 10 MR. MORRIS: Good afternoon. My name is 11 Travis Morris. 12 I have more relevant issues than I have 13 time. So I'll get right to the most relevant one. At 14 Mountain Home VA Medical Center in Johnson City, 15 Tennessee, they have identified a spore, 16 microsporidia, that is usually only found with people 17 who have extremely compromised immune systems. They 18 found this in every Persian Gulf veteran that they 19 have tested. 20 These spores have been found in stool, 21 urine, in the skin rash itself, in sinus mucuses, eye 22 mucuses, and sweat. I'm passing around photographs 23 that have been taken of slides of some of these 24 veterans. Some of those are from myself. 25 We've been told that if microsporidia goes 209 1 untreated it can be fatal. It has been successfully 2 treated in Australia with Australian Persian Gulf 3 veterans and by Dr. Hymen in Texas. I don't have a 4 lot of information on his treatments. 5 There is some evidence that this could 6 possibly be a biological weapon. Based on the 7 chemical logs that have been declassified from U.S. 8 Central Command, NBC weapons were quite possibly used. 9 There's some evidence to that based on the 10 declassified chemical log. 11 This is a pretty serious illness, and the 12 VA has given a lot of resistance against recognizing 13 it. A man put his career on the line by giving me 14 those photographs. 15 I'd like to tell you here that by serving 16 in the Persian Gulf -- excuse me -- I've lost a 17 civilian career as well as a military career. I've 18 had a marriage fall apart. My family may quite 19 possibly be in danger. 20 People gave their lives for this country 21 and continue to do so. We'd like to have a cure, not 22 compensation and not sympathy, not pity, but be taken 23 seriously and to be cured. 24 Public statements have been made recently 25 that there's no evidence to support that any illness 210 1 exists. Forty thousand people on the VA registry with 2 very similar symptoms who were healthy one year, 3 returned from the Persian Gulf the next year and are 4 sick seems to be quite a bit of evidence in and of 5 itself to me, and this evidence, microsporidia, as 6 well as some of the other evidence that people have 7 presented here today I feel to be pretty compelling 8 evidence. 9 I urge you to look at that evidence, and 10 I thank you for your time. 11 CHAIR LASHOF: Thank you. 12 Questions for Mr. Morris? 13 Ms. Larson. 14 MS. LARSON: You said your family was in 15 danger. Would you clarify if that's because of 16 disease or what? 17 MR. MORRIS: Well, I said they possibly 18 may be in danger. I don't know what this is or what 19 it may do, how I got it. I know that I didn't have it 20 when I went to the Persian Gulf and I've had these 21 problems since I've come back. There's no definite 22 information on how contagious this could be or whether 23 I could transfer this to another person by being in 24 the room with them if they come in contact with 25 equipment or clothing that I had in the Persian Gulf. 211 1 So I'm frightened. 2 DR. LANDRIGAN: I don't want you to be a 3 doctor about how this bug may get spread, but what did 4 you do in the Persian Gulf? Could you tell us what 5 your -- 6 MR. MORRIS: Well, I served with the 7 Second Squadron, 17th Calvary, which is an aerial 8 reconnaissance squadron, in the 101st Airborne 9 Division. We moved around through the theater. I was 10 an intelligence analyst myself. I spent quite a bit 11 of time in several areas in the Kuwaiti-Iraq theater. 12 We came under some attacks. We had 13 chemical alarms go off. We had tests that tested 14 positive, repeated tests until they became negative as 15 was already mentioned here. We had been told 16 previously that if you were hit with these chemical or 17 biological weapons that people would immediately fall 18 over and die. That didn't happen. So at the time we, 19 you know, "rucked" up and did our job, which is what 20 we were supposed to do. It was a combat situation, 21 and you don't have time to worry. You just do what 22 you've got to do. 23 Looking back on it, I feel certain in my 24 mind that those times that we were told they're false 25 alarms, don't worry, move out; I feel certain in my 212 1 mind now that we were attached with chemical and 2 biological weapons, and I think that the reason that 3 we had testing that proved to be negative or positive 4 -- sometimes tests made simultaneously rendered 5 different results -- is that we're dealing with a 6 binary agent that's both chemical and biological, 7 which we have some intelligence information the Iraqis 8 were working on, and that it was a new type of agent 9 that our equipment did not test for. 10 That's a layman's opinion, but as I said, 11 I was an intelligence analyst, and I have some 12 knowledge. I'm by far not an expert. I have some 13 knowledge of Iraqi doctrine and weapon systems, and 14 that's my opinion. 15 MR. RIOS: Are you a disabled veteran 16 right now? 17 MR. MORRIS: I have filed a claim that I 18 filed in November of 1993 with the VA. It has been 19 processed since November of 1993 with no results given 20 to me. I continually check on it. The last thing 21 that they told me was that they were waiting on 22 medical records from the Army. I informed them that 23 they had those medical records in my file already. 24 After four months they admitted that, yes, they did, 25 that there would be some delay, but they were 213 1 continuing to process my claim. 2 At this point I have received no 3 compensation, and I'm not listed as a disabled 4 veteran. 5 MR. RIOS: So it's still pending, in other 6 words? 7 MR. MORRIS: That's correct. 8 MR. RIOS: And it's your position that 9 from what you saw and experienced that there were some 10 chemical war agents used against you by the Iraqi 11 government. Is that your testimony? 12 MR. MORRIS: That's my belief. 13 MR. RIOS: Pardon me? 14 MR. MORRIS: That's my belief, yes, sir. 15 MS. TAYLOR: I have a follow-up. When the 16 chemical alarms went off, were you ordered as well to 17 take the pills, the pyridostigmine? 18 MR. MORRIS: We were ordered immediately 19 after arriving in country. We received several 20 injections that we were told were anti-nerve agent, 21 and we were immediately ordered to begin taking a 22 series of pills. I have no idea what those pills 23 were, but we were observed by our medics and 24 commanders. We had to take them under observation, 25 and we took them daily, one pill a day, for the entire 214 1 time I was deployed in the theater. 2 MS. TAYLOR: And when the alarms would go 3 off, was there anything present that you were aware of 4 or you were just told that there was nothing to be -- 5 MR. MORRIS: We came under artillery fire. 6 We received fire from what's called a free rocket 7 overground 7, which is a piece of Soviet equipment 8 that the Iraqis have. It landed within an assembly 9 area. So it didn't hit directly on the unit. There 10 were two explosions, one of them quite loud, one of 11 them muffled. The chemical alarms started going off 12 immediately throughout the 101st Aviation Brigade 13 area. Everybody went to MOP 4. Everybody began 14 conducting tests. Those test results were both 15 positive and negative at the same time. 16 We conducted tests for hours. We 17 redeployed out of the area. We were beginning the 18 decontamination process when we received word from 19 higher command that this was a false alarm, that they 20 had entered the area with the division assets to check 21 for chemical presence and that there was none 22 detected; that if we were getting negative results at 23 our location at that time to unmask, to take off our 24 MOP gear, and go about our business, which we did. 25 MS. TAYLOR: I just have one more 215 1 question. 2 CHAIR LASHOF: Yes, sure. 3 MS. TAYLOR: Are there others in your unit 4 that you know of that have been affected or have 5 similar symptoms to what you're having? 6 MR. MORRIS: I've only had contact with 7 one person since I left the Army that was in the same 8 unit as myself. He is having some severe problems 9 that are, again, undiagnosed. They can't say it's 10 this, it's that, but he's having a multitude of 11 problems. 12 I know of several people who were in the 13 101st Airborne Division that I've come in contact with 14 since, while they weren't in the same unit, were in 15 the same general areas that I was in, and they report 16 much the same symptoms that I have myself. 17 CHAIR LASHOF: Dr. Baldeschwieler. 18 DR. BALDESCHWIELER: Excuse me. Is it 19 your belief that the microsporidia was part of an 20 Iraqi biological weapon or that that was an endemic? 21 MR. MORRIS: That's my belief. My belief 22 is that it was part of a weapon. As far as the 23 medical evidence, there is some evidence from a lab 24 that I believe to be in Texas. I got this information 25 last night. So I don't have it fully, but that they 216 1 had singled -- that in this microsporidia from 2 equipment that had been brought back from the Persian 3 Gulf that had single strand DNA rather than dual 4 strand DNA, and that that was indicative of some kind 5 of biological tampering. I'm not a biologist, so I 6 can't speak to that a whole lot. I just know what 7 little I read in the report. 8 As far as the medical evidence goes, the 9 microsporidia is there, and it's been there in every 10 Persian Gulf veteran that they have tested at Mountain 11 Home VA Center in Johnson City, Tennessee, and 12 normally they only find it in and it's rare to find it 13 in people such as AIDS patients or patients who have 14 received severe chemotherapy. In fact, that's how it 15 was discovered. The chief microbiologist realized he 16 had these spores in a stool specimen, and he thought 17 that he had uncovered somebody who had HIV, reported 18 to that person that they likely had HIV, began testing 19 him. The man didn't have HIV. They conducted some 20 more tests, couldn't find anything that was wrong with 21 his immune system, but he had this HIV, but he was 22 also being processed for the Persian Gulf protocol. 23 So just out of curiosity they tested another veteran. 24 They continued to test Persian Gulf veterans as they 25 got positive results on each one they tested, and 217 1 eventually issued a call to all Persian Gulf veterans 2 to come in for testing that were being seen at 3 Mountain Home, and every veteran that they've tested 4 from the Persian Gulf at Mountain Home has shown 5 positive for microsporidia. 6 However, they have been told at Mountain 7 Home not to call it microsporidia, to call it by a 8 name of unidentified spore. They keep separate logs 9 in the microbiology department there because they feel 10 like it's being negligent not to treat people. 11 I don't know what all the treatments are. 12 I know that I've seen some reports that Australian 13 gulf veterans have been treated with extensive therapy 14 of some type of drug that clears this up, and I have 15 heard that a doctor in Texas has had some success 16 treating this with the same drug. 17 You know, again, some of this is 18 unsubstantiated. You know, you hear things, and at 19 this point we're trying to listen to everything that 20 we can because, quite frankly, we're scared. 21 CHAIR LASHOF: Thank you very much. I 22 think we'll need to move on. 23 MR. MORRIS: Thank you. 24 CHAIR LASHOF: The next person is 25 Christopher Brown. 218 1 MR. BROWN: Good afternoon. I want to 2 thank the President and the members of this committee 3 for your interest and attention. 4 I'm a local attorney in the Glen Burnie 5 area with a lot of contact with the Fort Meade 6 military personnel. A lot of what we've heard today 7 has to do with the interest and concern for the 8 soldiers. Well, the interest also was to not leave 9 any stone unturned, and I have another stone that I'd 10 like to turn over here. 11 The soldiers go to fight for their country 12 and for their friends, but they also go to fight for 13 their family, and much has been said today about the 14 soldiers. Very little has been said today about the 15 families. 16 Senator Rockefeller said that the soldiers 17 take the risk. They know what they sign up for. 18 That's part of the deal. What's not part of the deal 19 is what may happen to their families, to their 20 children, to their spouses. 21 The soldiers here were injected 22 experimentally with anthrax and pyridostigmine 23 bromide. I, along with the office of Peter Angelos, 24 represent 30 families that have seriously injured, 25 disabled children by these experiments. The drugs 219 1 were used even though they weren't sure of the 2 effectiveness of the drugs. They were used without 3 knowing the long-term effects of them. The soldiers 4 were given them without the solders' knowledge or 5 permission, very often against their will, and we know 6 that the injections are not always recorded in the 7 medical records. 8 I happen to have a copy of an order that 9 indicated from the Department of Defense that the 10 anthrax vaccine was not to be recorded in the records 11 until after the operation, after the theater was 12 completed, and then it was supposed reannotated back 13 into the records. Of course, at that time most of the 14 soldiers had gone and the records were separated from 15 them, and it never got done. So it does not surprise 16 me to hear that it's just not present in their 17 records. 18 The profile of the average client that 19 we're representing is essentially a healthy couple who 20 may have had one or two or three healthy children. 21 Then they receive these experimental inoculations. 22 They fought. Husband or wife fought overseas. Some 23 didn't go. Some just received the inoculations and 24 stayed here in the States. It's a very critical 25 issue, why we believe that a lot of what's happening 220 1 is from the inoculations and not from any exposure 2 overseas. 3 Then we have them coming back. Then we 4 have repeated miscarriages, not just one, not just 5 two, but several miscarriages, unreported 6 miscarriages. I personally know that they are 7 unreported because I tried to report them, and they 8 would not accept any information of any children that 9 were not then alive at the time in the VA registry. 10 I tried to report a child that was one 11 year old and had just previously died, and they would 12 not accept the information. I tried to report a 13 miscarriage, and they would not accept the 14 information. I know that that is being under- 15 accounted for. 16 Then after the miscarriage, we have 17 children born with disabilities, not only here, not 18 only to our soldiers who fought over there, not only 19 to our soldiers who stayed here and never went 20 overseas, but to soldiers in Britain and other places 21 around the world. 22 And the disabilities are consistent. 23 They're a mirror imagine type of disabilities. Most 24 of these families have also had genetic testing done, 25 which has proven that genetics was not the cause of 221 1 the defects to the children. 2 The deformities to the children are 3 startling. They're very repetitive. I'll show you 4 several pictures here. These involve facial 5 deformities as well as body deformities. These are 6 four separate families, four separate people involved 7 in receiving the inoculations. 8 The deformities are bowel, rectum 9 deformities, kidneys, either enlarged or missing, 10 multiple ureters or missing ureters, bowel 11 dysfunctions, diaphragmatic hernias, heart 12 irregularities, shrunken esophaguses, and then 13 continuing up the midline up into the facial 14 deformities, as you see here one side of the face 15 smaller than the other side, sometimes ears missing, 16 sometimes jaw missing. Call it Goldenhar Syndrome, 17 whatever you want to call it. It's the repetitive 18 nature of the type of disabilities that we see in all 19 these children, and we're hearing constantly from all 20 the families not only just the physical deformities 21 that are being operated on and that are being dealt 22 with, but also immune problems, that the kids are not 23 recovering well. They're not receiving antibiotics 24 well. They're not snapping back as you would expect 25 the kids to do. 222 1 My point in being here today is to 2 indicate that what's missing from what you've heard so 3 far is the study. You've received some of the data of 4 the 36,000 veterans registered, and you have 1,400 5 showing birth defects. What are they? How bad are 6 they? Are they all Goldenhar type syndromes? Are 7 they all just midline type syndromes? 8 These things are going unevaluated, are 9 going missed. So the point is please in your 10 investigation while you're making recommendations, 11 don't forget the children. They can't wait 20 years. 12 It's got to be done now. 13 CHAIR LASHOF: Thank you very much. 14 Questions for Mr. Brown? Any questions? 15 (No response.) 16 CHAIR LASHOF: No. Thank you very much. 17 MR. BROWN: Thank you. 18 CHAIR LASHOF: Oh, I'm sorry. 19 DR. LANDRIGAN: Do you have any hypothesis 20 as to what component of the vaccine might be 21 responsible? 22 MR. BROWN: We have talked with about ten 23 different doctors, epidemiologists, toxicologists, 24 teratologists, and what they all tell me is that it's 25 logically consistent that there's something in the 223 1 inoculations that is affecting the production of male 2 sperm and that it's causing birth defects because of 3 the timing of a developing embryo and when these 4 defects become present, and what they know of the 5 inoculations. 6 Unfortunately we don't have any of that 7 finished. That's still an ongoing process. 8 CHAIR LASHOF: Yes, doctor. 9 DR. LANDRIGAN: Have semen analyses, sperm 10 analyses been done on some of the fathers? 11 MR. BROWN: We have been asking for that 12 to happen. I don't believe the Veterans' 13 Administration is doing that as a regular course, and 14 we have not had it done privately, but that's going to 15 be the next step. 16 MS. LARSON: Point of clarification on 17 sort of a side issue. Several people have testified 18 that they received vaccine not knowing what it is. 19 You also said that some people received the vaccine 20 against their will, and that's the first time we've 21 heard that. 22 Can you verify that that's -- 23 MR. BROWN: From talking with my clients, 24 they're under orders. They have to -- they have to 25 submit. 224 1 MS. LARSON: So they were not able to say, 2 "We won't have it"? 3 MR. BROWN: That's according to what they 4 have told me, but that's also borne out in the 5 Rockefeller report that showed that many of the 6 veterans were not allowed to decline. 7 Thank you. 8 CHAIR LASHOF: Thank you very much. 9 David Addlestone, National Veterans Legal 10 Services. 11 MR. ADDLESTONE: My name is David 12 Addlestone. I'm the Joint Executive Director of the 13 National Veterans Legal Services program here in 14 Washington. We're a nonprofit institution that is 15 involved in veterans' law and policy issues. 16 I've been involved with the military and 17 veterans' law for 30 years and hope that I could 18 perhaps offer some suggestions that might guide your 19 course of inquiry. 20 Some of the work we're currently doing in 21 the area of Persian Gulf veterans is included in your 22 packets, the self-help guide for Persian Gulf 23 veterans, and I would suggest you compare that to 24 government publications to see how we're trying to aim 25 things at the public so they can understand them. 225 1 I have a prepared statement that goes into 2 some details, and I apologize for not getting it to 3 you until late today. I'll just try to hit the high 4 points in my oral testimony, and my staff would be 5 certainly available to assist in any way possible in 6 the future. 7 One point I'd like to try to make here is, 8 I mean, we seem to be split. We have people on one 9 extreme who think that everything that's wrong with 10 anybody who went to the Persian Gulf was caused by the 11 Persian Gulf, and we've got people on the other 12 extreme that think that everybody that is claiming 13 they're sick are a bunch of chiselers, and most of us 14 certainly are somewhere in between and open minded, 15 but the debate is somewhere between those two poles, 16 and I hope I'm not preaching totally to the choir, but 17 I mean the dynamics of all of this are very important. 18 I'm speak from having spent about 20 years 19 working on the Agent Orange issue, and there was a 20 great lack of dialogue among the public, the people 21 who felt they were affected, and the government and 22 scientists. 23 We've got young, healthy people here who 24 went to war and came home either unhealthy or feeling 25 not quite as healthy. Obviously some people have some 226 1 common post-war letdown in their feelings, and there 2 are some people that imagine that all kinds of things 3 are wrong with them. However, most of these folks are 4 interested in getting well or some sort of reassurance 5 that they are well, and I've heard all of this today 6 from all the other witnesses. So I don't need to 7 repeat it. 8 The government is certainly not attempting 9 to be callous in this regard. However, the processes 10 of government are just what they are, and they can 11 appear to be so. There are certain institutional 12 restraints. Government lawyers tend to demand proof 13 of things and seek causation, which is not really a 14 terribly relevant issue here when dealing with perhaps 15 an epidemiological problem. 16 Government press people like to put out 17 positive stories because there's no point if you're a 18 government press person in putting out a negative 19 story. The same thing with government scientists and 20 doctors. There are certain institutional mindsets 21 that make it difficult to resolve issues like this. 22 But the government sort of sometimes is in 23 a can't win situation. There are a lot of very 24 useful, short-term studies that can be done obviously 25 to advance science, but you issue a partial study like 227 1 the recent DOD report, and it can be immediately 2 attacked depending on how the publicity spin is placed 3 on it, and it creates a lot of harm. 4 On the other hand, the government can't 5 withhold the information from the interested public. 6 I don't have a ready solution for this other than 7 perhaps some sort of centralized control over what are 8 known to be the normal processes of government. This 9 might facilitate the dissemination of information to 10 the public in a way that won['t create a firestorm of 11 criticism or a lack of understanding. 12 I think the recent DOD report was a good 13 example. I was in the Pacific Northwest and read the 14 wire service stories, and basically the wire service 15 stories said, "Conclusive study of veterans proves 16 there's no definitive illness." Well, I suppose 17 that's one interpretation of it, but from my 18 standpoint it certainly wasn't a study of veterans. 19 It was a study of generally healthy active duty 20 people. 21 I looked at the press release. The press 22 release is not that bad from DOD, but the press just 23 jumped on it and ran with something that simply is not 24 the truth, and of course that first day's news is 25 over. 228 1 Now, I would suggest that this committee 2 recommend to the administration that there be some 3 sort of centralized coordinating agency that can 4 anticipate these problems. 5 In the case of Agent Orange, I think the 6 problems were intended, but here I think everybody 7 means well, but by the very nature of the way 8 government issues press releases and press coverage, 9 you're asking for problems. 10 A central oversight mechanism would be 11 appropriate in our view. The inter-agency task force 12 on these issues frequently doesn't work. I mean 13 everybody has a dog in the hunt, as we Southerners 14 say, and I think maybe we're better off with a 15 centralized mechanism that can oversee the foibles of 16 agencies, and I don't mean this in a negative sort of 17 way. It's just the inherent nature of government 18 agencies. 19 CHAIR LASHOF: Your time is up. So could 20 you finish up, please? 21 MR. ADDLESTONE: Some of the 22 recommendations we make are that we focus on health 23 care first. Compensation benefits are fine, but most 24 of the people want to get well and get back to work. 25 These seem to be illnesses as a family 229 1 problem, and that families cannot be treated under 2 most legislative schemes currently in existence for 3 the people affected. 4 It would be a healthy opportunity of there 5 could be some forums outside of Washington where 6 people could express their feelings. There may be 7 some way to make health care customers feel like 8 they're being satisfied. I mean there are very 9 negative feelings about people that are going for 10 treatment. Whether it's the agencies' fault, I don't 11 know. 12 And the chemical and biological warfare 13 issue is real. I mean people out there believe it 14 happened. I haven't a clue where it did, but from a 15 lawyer's standpoint of there were 10,000 false alarms, 16 I'd be curious if the manufacturer who made the alarms 17 is getting paid for them. There are probably ways to 18 deal with that. 19 I'd be happy to answer or try to answer 20 any questions. 21 CHAIR LASHOF: Thank you. 22 Dr. Hamburg. 23 DR. HAMBURG: You referred to the need for 24 a central oversight mechanism because of the 25 wobbliness of inter-agency cooperation. Do you have 230 1 any suggestions about how that might be done 2 effectively on this particular problem? 3 MR. ADDLESTONE: Well, maybe we could look 4 back at the Agent Orange experience. There was a 5 coordinating council established in the White House, 6 and they did a pretty good job of keeping the lid on 7 things because that was -- I mean what I have seen and 8 read -- their intention was to keep a lid on things, 9 frankly, and that was not an unreasonable political 10 decision. It was going to be a very expensive 11 proposition to pay people for Agent Orange claims. 12 It would probably be a very difficult 13 thing to do. I've never done it, but it was certainly 14 done there, and it was staffed at an extremely high 15 level. I mean it was at the level where the 16 President's views were known to the agencies, and it 17 wasn't just everybody delegating down, down, down to 18 the same people who are still or generally still 19 there. 20 I've tried to touch on a little bit of 21 that in my written statement. 22 CHAIR LASHOF: We will, of course, review 23 all of the written statements. 24 Ms. Larson. 25 MS. LARSON: No. 231 1 CHAIR LASHOF: Thank you very much. 2 MR. ADDLESTONE: Thank you. 3 CHAIR LASHOF: Tom Hennessy. 4 MR. HENNESSY: Good afternoon, Dr. Lashof, 5 panel, esteemed guests. We very much appreciate you 6 listening today. 7 As a person who's been almost totally 8 disabled for eight years with three out of four of 9 these conditions here, I am very heartened by the 10 Presidential Commission, that it happened, and second, 11 heartened by the quality of the questions that you 12 have been asking of the presenters today. You seem to 13 have an open mind, and that's definitely what we need. 14 In the interest of time, I did submit a 15 written statement which most of you have. It's got 16 the little RESCIND logo on the front, and also a chart 17 that shows similarities between Gulf War Syndrome and 18 chronic fatigue syndrome. That's going to be pretty 19 much the heart of my talk. It's a gray and black 20 chart. 21 It was put together by this Dr. Garth 22 Nicholson, who you have heard mentioned by several 23 people today. He called me last week and told me that 24 he was coming up to give a briefing to the Department 25 of Defense. Dr. Chi Ching Lowe, some of General 232 1 Ronald Blank's people, some of Phil Lee's people, and 2 we were not allowed to attend. So we are very happy 3 that you're here today. 4 I did make one copy for Dr. John 5 Baldeschwieler of his manuscript, but it is not 6 published yet, and he asked if you make a copy and 7 then maybe mail it back to me, and I have a phone 8 number where he can be reached. 9 I'm the President of RESCIND, which is a 10 small organization. It has members in about 20 states 11 and about 12 foreign countries. It is our contention 12 that there is no one Gulf War illness. There are 13 multiple illnesses. The four major ones we believe 14 are chronic fatigue immune dysfunction syndrome, which 15 is on your sheet; myalgic encephalomyelitis, which is 16 older names for it; Gulf War Syndrome or Gulf War 17 illness; fibromyalgia syndrome; and multiple chemical 18 sensitivities. All four of these overlap, and the way 19 I describe it is like five blind men describing an 20 elephant. If you're holding the tail, you describe it 21 one way. If you're holding the trunk, you describe it 22 another way. If you're holding one of the feet it's 23 a totally different description. 24 But we believe there is a common 25 biological pathway to all of the insults these people 233 1 talked about, whether it be a pyridostigmine pill, 2 depleted uranium, chemical virus. 3 Some of the descriptions that I have used 4 for up to six years is very simple. It's a train on 5 a track. Think of the engine of the train as your 6 brain, the body of your train is your body. It has to 7 run on two rails to meet its destination. One is your 8 immune system, one is your central nervous system. It 9 is supported by railroad ties. We say, number one, 10 it's how you handle stress. Most of us are Type A, 11 workaholics, 14-hour days, seven days a week. We 12 internalize stress. 13 A lot of my friends don't like to admit it 14 but there's a psychological predisposition. Most of 15 us are workaholics. The whole Army, as far as I know, 16 in the Gulf was a volunteer army. It was people who 17 wanted to serve their country. 18 Genetic predisposition, they just found 19 there might be a genetic predisposition for fatness, 20 for breast cancer, for other cancers. Maybe there is 21 a predisposition, and with all of the speed of the 22 human genome project, we ask you to incorporate some 23 of that information in your studies. 24 Environmental toxins, they could be 25 anything. I personally got sick after eating a plate 234 1 of bad oysters in Houston, Texas, eight years ago, but 2 my job was leasing construction equipment to all of 3 the big refineries and chemical makers and biological 4 agents, and at the time Saddam Hussein was on our 5 side, and we were financing a lot of his biological 6 and chemical weapons, and I think that's one of the 7 reasons that DOD has been sweating bullets for having 8 someone like you to come in and ask as many questions. 9 Vaccines, I don't know the nature of all 10 these vaccines, but there's still even a discussion 11 today about the Sabine and the Salk polio vaccine and 12 others. What I say is any train can race along a 13 track. They can have rotten railroad ties, and you'll 14 still get to your destination unless there is some 15 agent that causes the train to buck. When it hits a 16 place where there's eight or nine rotten railroad 17 ties, that's when you get CFIDS, ME, or Gulf War 18 Syndrome. 19 I have elucidated ten different points, 20 and with all due respect to David Letterman, I just 21 want to go through it. 22 Your name. Calling us chronic fatigue 23 syndrome or Gulf War Syndrome, it's like calling 24 living a chronic breathing syndrome. It means 25 nothing. Any chronic illness will result in fatigue 235 1 to the people that have it. 2 Dr. Nicholson's chart which you all have 3 on your table, it overlaps almost identical with one 4 exception, and that is sensitivity to light. I don't 5 know how these people could stand up here with these 6 bright lights. Most of us who have Gulf War Syndrome 7 or CFIDS are very sensitive to light. 8 A written instrument. If they're talking 9 about going on the Internet, why don't we get ten 10 questions from the best chemical person, best 11 biological person, best psychological person? Then we 12 put it on there, in the Internet or in doctors' 13 offices, with a hidden number such as a PIN code plus 14 your social security number and your mother's maiden 15 name. That PIN code would enable these people who are 16 still fighting to keep their jobs to be honest, but 17 still have privacy. 18 Avoid duplication of effort. There is a 19 lot of money being spent at the CDC which is in there 20 now on chronic fatigue syndrome, on multiple chemical 21 sensitivities. Let's use the data. Tens of thousands 22 of people they've interviewed. Dr. William Reeves is 23 one of the people who's in charge of both Go for 24 Syndrome and CDC. I can provide you a lot of 25 information, and the most polite statement I could say 236 1 is he's probably not the best guy for the job. 2 The degrees of severity. No one mentioned 3 that anywhere in the world. I've research 15,000 4 pages of information. There are three levels. One is 5 a 40-hour work week, but you're just dragging your 6 behind. You can't cook, shop, clean, anything. 7 Number two, a lot of nurses and teachers 8 are doing this. They're sharing a job code with 9 someone else. 10 Number three, you're like myself. Someone 11 has to drive you, cook, pay your bills. 12 So a 35 year old person, instead of making 13 100,000 a year and paying 30 to 40 to Uncle Sam, I'm 14 a 41 year old person totally bedridden getting 13 15 grand a year on disability. It's a double loss, a 16 blow to Social Security and Medicare. This same thing 17 is happening to these people. 18 Any CDC and NIH cohort studies, absolutely 19 you have to have age and sex matched controls. I 20 think it was Dr. Lashof this morning. There's no way 21 they can do a definitive study at DOD without 22 including age and gender matched controls for young 23 healthy people. 24 A lot of these Go for veterans -- I was on 25 Larry King about four years ago talking about chronic 237 1 fatigue syndrome. He said, "What do you feel like, 2 Tom?" 3 I said, "I feel like this." Lieutenant 4 Jeffrey Zahn had just been shot down in an A-6 fighter 5 plane, and he was all beaten up in front of the 6 cameras. I said, "I look okay, but I'm sick as a 7 dog." 8 Cutting off? 9 CHAIR LASHOF: Do you want to finish up? 10 MR. HENNESSY: Okay. Finishing up, 11 treatment protocols. There is no known treatment 12 protocol. While you're researching this, we have 13 bills to pay, food to get on the table, rent to stay 14 alive. 15 Nationwide database, we're privacy. Last 16 week there's a brand new company, Netscape, $2 billion 17 market, capitalization on the first day of business, 18 dealing with the Internet. Use it. 19 And last but not least, listen to the 20 patients. The database requirement we can go through 21 later. I just want to leave with one quote. 22 President Clinton has mentioned we'll leave no stone 23 unturned. I think just by being here you've turned 24 over a lot of stones today, but I want to give you our 25 hero, which is Florence Nightingale, a nurse, over 100 238 1 years ago who had Crimean fever. But she was also a 2 contemporary of Dr. Louis Pasteur, and he said, "The 3 antigen is nothing. The terrain is everything." 4 And I have some more things to submit. 5 Thank you for your time. 6 CHAIR LASHOF: Thank you very much. 7 Are there questions, please? 8 Dr. Baldeschwieler? Oh, I'm sorry. 9 You indicated that your illness is not 10 related to the Gulf War; is that correct? 11 MR. HENNESSY: Yes, ma'am. I was a 12 salesman in Houston, Texas, working in refineries, and 13 I ate a bad plate of oysters, and I thought it was 14 food poisoning, but my symptoms are identical, and 15 after I made the statement on Larry King Live, 16 veterans started calling me, and they've been calling 17 me for four years saying, "We've got what you got." 18 CHAIR LASHOF: I see. 19 MR. HENNESSY: And there's been a lot of 20 government research. So I'm saying let's not reinvent 21 the wheel, and if you do a symptom check list -- 22 remember the gentleman that stood up and said that 23 it's cut off after six? They never go to 20. You've 24 got to go to at least 20 because it is only driven by 25 symptoms, and when 93 percent are men, they'll believe 239 1 it more. 2 Unfortunately when it was nurses and 3 teachers, 75 percent female, it was hysterical women 4 who couldn't handle it. 5 CHAIR LASHOF: Thank you very much. 6 MR. HENNESSY: I'd like to just submit 7 this videotape of some MacNeil-Lehrer, Larry King 8 Live, and a two-hour video of snippets for your 9 perusal. 10 CHAIR LASHOF: Fine, thank you. 11 Okay. Wendy Wendler, would you like to 12 take Captain Hamden's spot or have you departed? 13 Okay. Carol Picou. 14 MS. PICOU: She'll be passing out our 15 written testimony that was prepared for me by my 16 husband. My husband does most of my writing only 17 because what comes to mind is one time a soldier was 18 raised through the VA system and he was giving written 19 testimonies, and the VA told him that if he could 20 write this well, he's not really that sick. Well, my 21 husband helps me prepare all of my reports, and the 22 soldier never told them that his wife is the one that 23 helps him to write his also because of the long-term 24 and short-term memory diagnosis that we had suffered. 25 But before I begin, I'd like to thank the 240 1 Presidential Advisory Committee and my colleagues and 2 Wendy Wendler for submitting her time to me. 3 I am from the MISSION Project. I'm a 4 spokesperson today. MISSION Project stands for 5 Military Issue Service in our Nation. This 6 organization was originally Operation Desert 7 Shield/Desert Storm. My husband started this 8 organization while in San Antonio, Texas, on the 9 behalf of the returning San Antonio soldiers. He 10 started the support group because he saw how ill we 11 were. 12 Our mission, currently what we do is we 13 provide Desert Storm soldiers, family members, anybody 14 in the public information regarding what's happening 15 on Capitol Hill, on the testimonies, the NIH hearings, 16 all the other panels. We provide soldiers VA numbers 17 to contact them, and that's our main goal as the 18 MISSION Project. We're currently trying to gain some 19 funding to bring some soldiers and get tested and go 20 through the testing that I have gone through. 21 I was an active duty soldier for 15 and a 22 half years during the Persian Gulf War. I am now 23 permanently retired. Two years ago I stood before a 24 committee testifying as an active duty soldier. I 25 have lost my military career. 241 1 You have repeatedly asked questions why 2 soldiers refuse to call in and call the 1-800 numbers. 3 As the Honorable Stephen Joseph said, it's available, 4 but because when we do come forward and we speak out 5 and we talk about our illness, they tell us we're no 6 longer fit for active duty and we're not worldwide 7 deployable. 8 That's what happened to me. I'm not 9 worldwide deployable, and my condition had worsened. 10 So the best thing they said that was thought to do was 11 to medically retire me. 12 A bill was passed a year ago about TDRL 13 status, that no soldier should be put out unless they 14 are placed on TDRL status at a 50 percent disability 15 and to remain on that for the next five years until 16 they can evaluate their health conditions. I was on 17 TDRL status. I didn't even make it 14 months, and 18 they said that I was not fit. My condition hasn't 19 improved any, and that it would be best if I was 20 permanently disabled. They took my rate and didn't 21 allow me to submit any additional information because 22 they said it wasn't from my previous board. 23 I spent a year going through evaluations 24 through the VA hospital and the Department of Defense 25 because I had the best of both worlds. However, they 242 1 lost my records. The VA never received my active duty 2 records. So I am not awarded any disability on 13 3 outstanding diagnoses until they find my records. 4 The VA awarded me 100 percent permanent 5 disability, and looking at me I don't look disabled. 6 It's like Dr. Joseph said. One of the doctors had 7 said if we would have come back with an arm or a limb 8 missing, we would have been medically taken care of. 9 You can't see my illnesses most of the time. 10 Today I have the rash from underneath my 11 arms all the way down to my naval. I have the 12 blisters on the back of my legs. These come and go. 13 Unfortunately when they break out by the time I get an 14 appointment to the VA, the VA can't even biopsy them 15 because of the fact that they disappear. 16 So Monday I have an appointment with the 17 VA and hopefully they'll still be there when they see 18 me on Monday. 19 The problem is when you talk about the 20 depleted uranium issue, I don't stand and neither does 21 our organization on one cause or effect. We were 22 exposed to depleted uranium which was used for the 23 first time in our battlefields during the Persian Gulf 24 War. We inhaled those particles as front line troops. 25 I was a nurse in the front lines. I removed bodies 243 1 from the tanks. I received those bodies. We sat in 2 a convoy for over hours breathing, inhaling the 3 vehicles that were just burned. 4 I had served for 15 years. I was in the 5 Flugtag disaster in Germany in 1988 where I body 6 bagged 300 people. When I saw those bodies in Iraq, 7 they were as black as this, and this really startled 8 me because we were not in MOP gear. We were not 9 ordered to be in MOP gear, and I said this doesn't 10 look normal to have these bodies that charred. 11 So I was driving with my platoon sergeant 12 and chief ward master. I said, "Guys, I'm going to 13 take photos." I took photos of this because I was 14 concerned. 15 Seventeen days sitting in Iraq on our last 16 day, General McCaffery from the 24th Infantry Division 17 which we supported came and said, "Why aren't you all 18 in chemical suits? This is a contaminated area." The 19 last day deploying out of Iraq as we tore down our 20 hospital, we put our chemical suits on to leave Iraq. 21 I have photos of me in my just regular 22 uniform while the military support of the Marines were 23 around us in full MOP gear. 24 My problem was the pyridostigmine. I have 25 taken pyridostigmine. We were ordered to take it 244 1 three times a day, 30 milligram tablets the day of 2 deployment of the ground war. We were told every 3 eight hours. They woke us up, put us in formation, 4 and mandatory made us take this pyridostigmine. 5 One hour after I ingested it, I had 6 developed the tearing of my eyes, the twitching of my 7 eyes. I start drooling. My nose started running. I 8 started having muscle aches and twitches, and I told 9 my platoon sergeant, "I'm not taking this anymore. I 10 think I'm having a severe reaction." 11 He said, "You have to. It's mandatory." 12 So that kept up one hour after I ingested it. Finally 13 the third day as we're driving our convoy he said -- 14 I didn't take it. I spit it into my Pepsi can. He 15 said, "You didn't take your pill, did you?" I said, 16 "Well, no." He said, "Take it." So I took it; one 17 hour later, same problems. 18 When I finally set up our hospital, we got 19 there at eight o'clock at night. We were fully 20 operational at two in the morning. The next morning 21 I reported my symptoms, and they said, "Take it and 22 come see me." So I showed them my symptoms. They 23 told me, "Just keep taking you. You proved that it 24 peaked and it's working you the neurological system." 25 That was the results. I couldn't rescind 245 1 taking it. I was still ordered to keep taking it. 2 Pyridostigmine has never been tested on 3 healthy women or healthy human beings. That was my 4 concern. They gave the same amount of dosage to the 5 same men of different height and weight as they did to 6 women. 7 As in Senator Rockefeller's hearings, it's 8 not supposed to be prescribed like that. It's a nerve 9 agent that they give for myasthenia gravis, and even 10 with those patients you still have to watch for levels 11 of toxicity. 12 Also Dr. Joseph talked. You asked about 13 the levels of uranium, depleted uranium. I have a 14 soldier that contacted me two years ago after seeing 15 me up on Capitol Hill. He was hit by friendly fire, 16 and they didn't even know about him. We sent him to 17 Dr. Frank Keough in Baltimore, Maryland, who is doing 18 a depleted uranium study. 19 This soldier was tested, and he had 20 fragments in his shoulders and in his face. This is 21 part of the support group. We try to help soldiers 22 get to where they need to go. They removed his 23 fragments. However, just recently he had another 24 urinalysis study and his levels have increased even 25 though his depleted uranium has been removed. 246 1 They told him he was going to have an in 2 vitro monitor done in Nevada. Unfortunately they told 3 him that the machine was down. For two years this 4 soldier is still waiting for the in vitro monitor to 5 see if it's affected his lungs. 6 I requested to be tested for depleted 7 uranium only because when I came back someone called 8 me up here and they called me and it was an atomic 9 veteran. He said, "I'm really concerned about you. 10 You have the same symptoms I've had, and they used 238 11 which is a particle of depleted uranium. You have 12 depleted uranium poisoning." 13 So I requested to be tested. In March of 14 1994, through a Congressman, they ordered Fort Sam 15 Houston to test me for depleted uranium. I got 16 tested. My results came back September 17th. The 17 results were levels of uranium. However, they were 18 low levels, and the doctor said, "It's just background 19 radiation from living in San Antonio." 20 Prior to the war I didn't live there. I 21 was in Germany. I signed in my unit on the first. I 22 was alerted for the war on the second. I was never 23 exposed to depleted uranium until on the front lines. 24 Out of my unit was 300 people. One 25 hundred fifty went forward, and 150 stayed to the 247 1 rear. Two years ago I asked the other panels to take 2 my unit and do a study on them in San Antonio. We 3 have thousands of soldiers. Our babies are born with 4 birth defects, hypothyroidism. I asked them to take 5 our unit. Out of 150 of us that went forward, 40 of 6 my comrades are ill. We were discharged before this 7 ever became a Desert Storm issue. 8 So out of these soldiers the rest don't 9 want to come forward because of their careers. Most 10 of us had 15, 17 and 18 years in. 11 When the men refused to go to the front, 12 I was the next highest ranking female. I recruited 13 seven other women to go. We took the units, and we 14 went in. We drove five ton trucks. We set up the 15 operating room, and we were the first ones to drop on 16 line. 17 Those women, six of them, have admitted 18 their illness and four of them have been discharged, 19 and the other two won't say anything because of fear 20 of their careers because they have one year left. 21 This has been happening to not only 22 myself, but to the family members. Three of our 23 babies in San Antonio have the missing eyes, the ears, 24 the thyroid. 25 I went to the VA hospital in September. 248 1 My condition was getting worse. I have the abdominal 2 distension, the fluid retention. I have the 3 neurological damage. I have an autoimmune deficiency. 4 It was all diagnosed by a civilian doctor through my 5 medical insurance. Since then my medical insurance 6 said they're not paying because this is combat 7 related. I got discharged noncombat related. The 8 Army CHAMPUS said they're not paying because I was 9 ineligible for CHAMPUS because I was still on active 10 duty. 11 This is what's happening to soldiers. I 12 had 16 and a half years. I just got retired this 13 March. I was hoping to see 20 years as a commissioned 14 officer. I was up for a commission when the war broke 15 out. 16 So this is what has happened to my life, 17 my family. I have no feelings from my waist down. I 18 have to catheterize. This was the solution the Army 19 gave me. Catheterize yourself six to eight times a 20 day, wear diapers because I have lost all the muscles 21 in my bladder, my rectum, and my vaginal muscles have 22 now deteriorated, and this was the solution that they 23 told me. 24 At my last medical board in March, it was 25 the same thing. Go to Social Security now. I went to 249 1 Social Security. Results just came back two weeks 2 ago. She has too much education. She's 38 years old, 3 and she can still use her hands. Disability denied. 4 So this is what soldiers are up against. 5 I ask you today if you look in the back, I have 6 several suggestions on recommendations, to keep 7 researching. We challenge this board. We've gone 8 through five other boards. We challenge this board 9 to, like you said, turn over all the stones and 10 investigate it and do it with an open heart, and we're 11 praying and God bless you that you can find an answer 12 for us before more soldiers die. 13 Thank you. 14 CHAIR LASHOF: Thank you very much. I 15 have allowed you to go quite over time, but I will 16 open it up for any questions. 17 (No response.) 18 CHAIR LASHOF: If not, okay. Thank you. 19 MS. PICOU: Any questions? 20 CHAIR LASHOF: I guess not. 21 MS. PICOU: Thank you. 22 (Applause.) 23 CHAIR LASHOF: Captain Julia Dyckman. 24 CAPT. DYCKMAN: I'm Captain Julia Dyckman. 25 I'm a drilling Reservist. I'm a Vietnam vet, and I 250 1 was recalled for Saudi Arabia for the Persian Gulf. 2 I'm a nurse, and I served with Fleet Hospital 15 in El 3 Jubail, Saudi Arabia. 4 I thank the committee for the opportunity 5 to present, but I'm also presenting for Colonel Herb 6 Smith, who was a recalled Army veteran who was a 7 practicing veterinarian and is in deteriorating 8 health. At this time he is also under care in the 9 hospital. 10 You have a copy of his report, and you 11 have a copy of my report. I would like to because of 12 time restraints deal with his conclusion. 13 He is a Persian Gulf vet who started 14 having symptoms after he returned and has been 15 constantly having problems proving his disability and 16 looking for treatment. He has gone through extensive 17 medical tests, some of them very elaborate, and is 18 still dealing with the Army Evaluation Board on his 19 medical condition. 20 I would like to at least read his 21 conclusions. The Gulf War Syndrome is controversial 22 because abnormalities in standard laboratory tests 23 produce results that do not match the intensity of the 24 symptoms recorded by the affected veterans. The 25 severity of the complaints from a young, healthy, war 251 1 fighter population was not expected. The 2 abnormalities anticipated from a tour in the Persian 3 Gulf did not appear. A routine office exam and a CBC 4 very likely will show nothing in most veterans. 5 Objective findings are few and far 6 between. Subjective findings are predominant. The 7 physician, especially a military physician, will not 8 be inclined to verify all of the subjective complaints 9 or believe the intensity of the complaints. Doctor- 10 patient relationships as a result are adversarial. 11 Consequently, specialized testing that 12 will reveal a medical problem will not be ordered. If 13 specialized testing is ordered, the resultant 14 deviations are so mild and subtle the physician will 15 not believe them and will not try to correlate the 16 results with the radical complaints of the patient. 17 Also, please remember all of the 18 specialized testing that was needed to verify that I 19 had a real problem and not a somatoform disorder, such 20 as PTSD. Few Persian Gulf veterans will have the 21 opportunity for such extensive testing. I repeat, 22 most Gulf War veterans have only subtle or mild 23 laboratory abnormalities that do not match the radical 24 symptoms which they report. It is not the character 25 of the abnormal results of the individual tests, but 252 1 rather the multiplicity of the mild or subtle 2 abnormalities that should be considered. 3 The difficult task is in inspiring the 4 military physician to correlate these subtle and mild 5 laboratory deviations with the symptoms and the 6 subjective complaints of the affected veteran. The 7 reality is that the veteran and his subjective 8 complaints are being ignored. Without a truly hard 9 look, a look that includes specialized testing, how 10 can DOD undisputedly hope to find the cause of Gulf 11 War Syndrome? 12 I'm making this presentation to explain 13 the problems that are being encountered in dealing 14 with the military, VA administration, and various 15 evaluation programs. As I said, I served with Fleet 16 Hospital 15 in El Jubail, Saudi Arabia. While on 17 active duty and in the Persian Gulf, I had the 18 following symptoms: rashes, open blisters, flu 19 symptoms, bronchitis, reaction to the anthrax 20 vaccines, chronic gastritis, rapid heart rate, and 21 uncontrollable high blood pressure. They all started 22 in February of 1991. 23 Upon my return to the States, I was 24 discharged from active status and went to the drilling 25 Reserve status. I was discharged from active duty 253 1 with conditions not resolved. 2 After discharge I was ineligible for any 3 care as a Reservist, and so I was forced to go to VA. 4 I went to VA in Harrisburg, Pennsylvania, and Lebanon. 5 They constantly disregarded most of the symptoms and 6 any specialized testing. So I asked to go to the VA 7 Medical Center in Washington, D.C. 8 At that time I was confirmed with Persian 9 Gulf Syndrome and irritable bowel syndrome. The 10 results proved on change in care. I received no 11 treatment and was returned to VA Lebanon waiting for 12 more possible types of treatment, but none was done. 13 I constantly had to insist on specialized testing to 14 prove that I was actually ill. 15 In 1994, I went to the clinical evaluation 16 program at Bethesda. The clinical evaluation program 17 produced the following diagnosis: chronic fatigue 18 syndrome, resting tachycardia, fibromyalgia, 19 irritable bowel syndrome, short-term memory loss, 20 chronic bilateral foot pain, chronic gastritis, 21 chronic headaches, and chronic sinusitis. 22 The problem is in some of the coding of 23 these conditions. I could not be given Gulf War 24 Syndrome. I had to be given a codable illness. So 25 the most predominant thing was fatigue. So it came 254 1 out as chronic fatigue syndrome, but what results with 2 these codable illnesses is the relationship that these 3 are all conditions that are found in the general 4 population and, therefore, difficulty in proving that 5 they're service connected. 6 I filed a claim with VA in 1991 for 7 service connection, and you have the list of all the 8 things I filed for. I was denied service connection 9 except for a foot problem with zero percent 10 disability. I appealed the decision, and two months 11 ago I got a decision saying there is no connection to 12 any medical condition and 30 percent PTSD. 13 The reason for the denial was given: 14 confirmation of any -- I can't read this -- 15 confirmation of my symptoms was past the two-year date 16 of service in the Persian Gulf. The rapid heart rate 17 was documented in theater, but the evaluation and 18 confirmation was past the two-year requirement. Most 19 of the evaluation programs and access to them were 20 started after the two-year requirement, which was set 21 by VA. 22 Chronic fatigue was denied because without 23 a finding of chronic fatigue syndrome during active 24 duty, which was a little hard to get that for the two 25 months we were there, there's no basis on which to 255 1 have service connection. 2 I'll close with some of the statements of 3 concern. One were the immunizations. Those 4 immunizations were given to us. They were not 5 recorded. We had books at our hospital. They were to 6 be recorded when we returned. I had contacted Admiral 7 Hagen, the Surgeon General for the Navy. He said they 8 would be added, but none of those records can now be 9 found. 10 One final thing, and that is I have 11 Persian Gulf disease. It is not one disease, but a 12 combination of illnesses. No other war had veterans 13 returning with the combination of symptoms and 14 illnesses that the Gulf War has produced. I feel that 15 the environmental exposure and the immunizations were 16 a major part in the symptoms that I am now having. 17 CHAIR LASHOF: Thank you very much. 18 Are there questions for Captain Dyckman? 19 (No response.) 20 CHAIR LASHOF: If not, thank you. 21 I've been allowing some of the people to 22 go on further since we're cutting out some of the 23 questioning time. 24 Aubrey Leager. 25 MR. LEAGER: I'd like to thank the 256 1 committee for allowing me to speak today. My name is 2 Aubrey Leager. 3 In 1974, while on active duty in the 4 United States Air Force, I received a vaccination 5 under questionable conditions. Shortly thereafter, 6 another unusual event occurred in which I was coerced 7 into eating a sandwich. Within 48 to 72 hours later, 8 I was deathly sick. In the later stage of the 9 illness, I had become so ill that I could not even 10 make it to the phone to call for an ambulance. 11 I went into a coma for over 18 hours. 12 When I awoke I was no longer the same person. 13 Whatever it was nearly killed me, and probably should 14 have. 15 There were many unusual symptoms during 16 the initial stage of the illness, and there were more 17 symptoms that developed later on. The latter of these 18 symptoms are known today as chronic fatigue immune 19 dysfunction syndrome, CFIDS. The initial symptoms of 20 the illness I now know today were those of intestinal 21 anthrax exposure. 22 Over the years there have been many 23 questionable incidents that have occurred that I feel 24 may have been related to my illness. Medical records 25 concerning the initial symptoms of my illness 257 1 disappeared. The Chief of Internal Medicine at 2 Weisbaden Hospital in Germany, who had been handling 3 my case, was suddenly reassigned. These are just a 4 few. 5 In 1990, I was diagnosed as having CFIDS 6 and began researching the disease. This is when I 7 first heard about mycoplasma incognitos and Dr. Chi 8 Ching Lowe of the Armed Forces Institute of Pathology. 9 I was able to contact the doctor's lab and requested 10 to be tested for incognitos. I was told the doctor 11 was out of country and that they did not know when he 12 would be back. They said if I wanted to get tested 13 that I would have to keep calling back. 14 In later calls some sort of cover-up 15 transpired in which I was told that the Armed Forces 16 Institute of Pathology did not employ a Dr. Lowe, and 17 that they had never heard of him. When I finally got 18 up with an associate of Dr. Lowe's at the institute, 19 I was told they could not test me. I now knew I was 20 on the right track and began checking into Dr. Lowe's 21 background. 22 I was able to find out that Dr. Lowe 23 specialized in the research of four diseases. One of 24 these diseases is anthrax. Around the same time I 25 heard about a CFIDS researcher who had discovered a 258 1 spumovirus in CFIDS patients. This researcher was Dr. 2 Elaine Dephratis of the Wistar Institute in 3 Philadelphia. 4 I contacted her and told her my story 5 about the military. She said she wanted to test my 6 blood, but that if she found anything unusual, that 7 she could not go against the government as she 8 depended on grants from them. She employed PCR and 9 other high tech methods in her research and told me 10 that it would take six to eight weeks for the results. 11 During this time I was still working as a 12 civilian for the Department of Defense and had a 13 disability claim in based on my illness. On several 14 occasions I was asked questions about what I was being 15 tested for, who had my blood, and which institute was 16 involved. It took several months to get up with Dr. 17 Dephratis as she would not return my calls. When I 18 finally got her, she reminded me of what she had told 19 me and then stated that she had found nothing. 20 I later heard stories that Dr. Dephratis' 21 lab had been broken into and that research work was 22 destroyed or missing. I was able to confirm that Dr. 23 Dephratis had left Wistar. 24 On Thursday night, August 10th, 1995, I 25 was able to contact Dr. Dephratis. She was able to 259 1 confirm that strange things had happened at Wistar. 2 She also said that her superiors at Wistar had 3 received a letter from the CDC discrediting her work. 4 She strongly feels that there was government 5 intervention to purposely discredit her. 6 When I first made contact with Garth and 7 Nancy Nicholson in October of 1994, they told me that 8 that very day they had received calls from the 9 Pentagon, Department of Defense, and other government 10 agencies threatening to discredit their work if they 11 went public. They also said that their superior at 12 the institute had received a threatening call from the 13 CIA. 14 In March of this year, I had my family's 15 blood drawn and flew to Houston where the Nicholsons 16 tested me and my family's blood for mycoplasma 17 incognitos. I and my family are positive for 18 mycoplasma incognitos. 19 I have been told by researchers in the 20 field of anthrax, as well as other researchers, that 21 the possibility of an experimental vaccine against 22 anthrax causing the creation of a mycoplasma is highly 23 probable. It is my opinion that in 1974 an 24 experimental recombinant DNA vaccine was tested upon 25 me and others, and that this vaccine caused the 260 1 creation of the original strain of incognitos. 2 I further believe that this vaccine was 3 altered by restructuring the DNA sequences to try to 4 prevent the creation of the mycoplasma and that this 5 new vaccine was covertly tested on our troops during 6 the Gulf War with the same unfortunate results. 7 At a recent Yellow Ribbon Panel conference 8 on the Gulf War illness, I was able to find out that 9 a Sergeant Jeff St. Julian and his unit received an 10 experimental Japanese vaccine. They were told that it 11 was an investigational Japanese encephalitis vaccine. 12 Sergeant St. Julian was never deployed to the Gulf, 13 but came down with the Gulf War illness. 14 This vaccine was produced at Osaka 15 University in Osaka, Japan. 16 I am now holding up a book entitled The 17 Unit 731, Japan's Secret Biological Warfare in World 18 War II. This book is a documentary based on secret 19 Japanese documents that were accidentally discovered 20 in 1987. At the end of World War II, it was 21 discovered that the Japanese had been conducting 22 secret biological warfare tests in occupied China, and 23 that they had used American and Allied POWs as human 24 guinea pigs. 25 CHAIR LASHOF: Mr. Leager. 261 1 MR. LEAGER: Yes. 2 CHAIR LASHOF: I'm going to ask you to try 3 to finish up. We'll take your full testimony. 4 MR. LEAGER: Okay. To make this short, 5 one of the researchers at the end of World War II -- 6 they were basically -- a deal was cut in which they 7 could walk. One of those researchers went on to a 8 career at Osaka University in Osaka, Japan. 9 I guess I won't have time to go on with 10 the rest of this, but I think I've made my point that 11 the vaccines -- 12 CHAIR LASHOF: It's your belief that -- 13 MR. LEAGER: -- are the most likely cause. 14 CHAIR LASHOF: -- the vaccine is the 15 cause. 16 Are there questions for Mr. Leager? 17 (No response.) 18 CHAIR LASHOF: If not, thank you very 19 much. 20 MR. LEAGER: Thank you. 21 CHAIR LASHOF: Denise Nichols. 22 MS. NICHOLS: I know it's late, and I know 23 all of us Desert Storm veterans are very, very tired, 24 and so I'll try to just make my comments short and get 25 us back on time. I have some prepared materials that 262 1 you'll be able to read in full. 2 When I got involved with this is by going 3 to war for my country, and now it seems like a 4 disaster. It seems like Armageddon or worse, and the 5 deeper I took trying to find out something to help 6 troops, to help myself, to help my family, it just 7 gets deeper and deeper. 8 We all love our country. In this group of 9 soldiers, the first time I met a lot of them in person 10 was at the NIH meeting, and I don't know about you, 11 but I hope that you have some of the reactions I have 12 when I met them there. I had served with them, and 13 when they were coming forward and trying to tell us, 14 tell all of us -- I was still in denial at times -- 15 what was going on, they are true Americans. 16 We all swore to defend the Constitution as 17 all officers and military officers and even the 18 President. We need answers. This is like a dark, 19 dark story, and I have a hard time sometimes keeping 20 logical, and we hear all kinds of things, and looking 21 at other things that we hear, and it's a struggle, and 22 it's a struggle when you're suffering with memory 23 problems. You have low grade fevers. You're trying 24 to travel, trying to fight for your own rights, trying 25 to help others. 263 1 Not anyone in this room has a very low 2 phone bill. We've been trying to help each other. 3 I got caught on national TV at Senator 4 Reigle's hearings. I never dreamed that I would ever 5 get up to Secretary Dorn and be really mad and telling 6 him, hey, we're taking care of each other and we're a 7 family and we're a team. We went over together and we 8 did the job. Now, where is the VA and DOD? 9 Now I have the question of where is the 10 President. What's he going to do? We cannot keep 11 suffering. We cannot. 12 We lost one of our brave pilots two weeks 13 ago, Colonel Don Kline, and I want him recognized 14 today, and I want him recognized by the President. 15 Colonel Don Kline was in the first wave of planes into 16 Baghdad. He hit biological and chemical facilities, 17 and then evading another plane, he flew right back 18 through the plumes. I had heard about him for a long 19 time. In March when I organized and had the meeting 20 in Dallas, I met the man, a full colonel, highly 21 decorated like Colonel Herb Smith, a pilot. 22 I'm a flight nurse or was. He couldn't 23 talk. He was paralyzed. He was skin and bones. This 24 shouldn't be happening. 25 I told him I'd fight. I'd fight for the 264 1 ones that didn't have a voice or had already gone on 2 before us, that I wouldn't stop until we got answers 3 and got care for our veterans and our families. 4 He gave me a thumbs up. We're not giving 5 up. We want the truth. We want action and action 6 now. I am tired of handling wives over the phone when 7 their husbands die. Some of them their husbands tell 8 them or their wives -- I don't know if we've lost any 9 female vets. It seems like I get the phone calls on 10 the male vets -- and they put in for benefits and 11 they're denied. 12 They're 23 years old. They have two kids. 13 The kids are sick. What is going to happen? We've 14 got to stop this now. I don't know what has happened 15 that's wrong, but we've got to stop it and turn it 16 around because this is a national security item when 17 your public health of your country is involved. 18 And we haven't said that word here today, 19 but it is involved, and we're concerned. We've been 20 coming to you and coming to you. We come a great 21 distance, and it only makes us suffer more because our 22 physical bodies start tearing down every time we 23 travel up to Washington or we try to get together to 24 share information, to keep in touch with each other. 25 We go home and we're tired and we're sicker and it 265 1 takes our bodies a little time. We dose them up with 2 vitamins and whatever else to try to keep holding on 3 and keep getting answers. 4 Our phone bills are horrendous. We're not 5 getting any help from the government, and I'm sorry. 6 Today at lunch when you all left and you went across 7 the hall, I think you had a lunch. Hey, the veterans 8 have traveled up here. We've gone at great expense. 9 We've been messed around by the government, pushed 10 down on psych. reasons. We can't afford to eat here. 11 If we get a hospitality room we get in trouble if we 12 bring in food from across the street. 13 This has not been a user friendly meeting, 14 and you need to change that. We're sitting up here, 15 standing up, holding onto this. I've had chest pains 16 today. I've been sick. I've been flushed with 17 whatever my fever is waiting my turn. You don't even 18 have a table and a chair for us, and you rush us 19 through our documentation for you. 20 So you need to think how you're treating 21 us, too. I'm tired of people being labeled 22 psychiatric patients. It's like it was pre-termed to 23 happen. That's what's scary, when you sit here and 24 look at things and you know the first thing they 25 pushed everybody through was get that psych. bill 266 1 through the VA or through the DOD, you know, and then 2 you can have a neuro. eval., but everybody, almost 3 everybody had to go to psych. It was like they were 4 going to write us off as psych. 5 I'm sorry. We were highly trained. I 6 don't know what's going on, but it sure is scary out 7 here, and we want answers and we can't wait much 8 longer. We're sick, physically not mentally. Okay? 9 CHAIR LASHOF: Thank you. 10 Are there questions? 11 (No response.) 12 CHAIR LASHOF: Okay. Thank you very much. 13 Reina Duval, Reina Duval. I guess she has 14 left. 15 Robert Slavin. 16 MR. SLAVIN: My name is Robert Slavin. 17 I'm speaking on behalf of SIC, Save the Innocent 18 Children, and currently I'm assigned to Fort Meade, 19 the Fort Meade Military Police. 20 I'd like to thank the members of the 21 committee for the opportunity to convey my feelings on 22 what has been a trying four years. I would also like 23 to, due to time, there are other members of this group 24 that were going to speak, and due to a mis-scheduling 25 I was put in at the last minute, but there's a 267 1 Sergeant Brad Mins also from Fort Meade who won't get 2 a chance to speak. You have his letter along with his 3 wife's. Also another family that this is the second 4 anniversary of a miscarriage of their first child. 5 They were unable to make it for emotional reasons, 6 also staying home taking care of their second child 7 who is developmentally or born with severe birth 8 defects known as Goldenhar Syndrome. 9 In April of 1991, I was deployed to 10 northern Iraq for Operation Provide Comfort, which has 11 been overlooked by many people as part of the Persian 12 Gulf War. My unit at the time was the 284th MP 13 Company under the 18th MP Brigade stationed at 14 Frankfurt, Germany. Our mission was to provide 15 humanitarian service and support for the resettlement 16 of the Kurds out of the northern mountains as well as 17 security against the Iraqi military. 18 My time spent in Iraq was very self- 19 rewarding, in knowing the large numbers of devastated 20 Kurds that our military assisted. I am confident in 21 saying that the majority of people in this room today 22 will never know first hand the effect our U.S. troops 23 had on hundreds of thousands of people in need. 24 For this reason alone I can stand proud 25 and say I'm glad I was part of this humanitarian 268 1 effort. 2 My return to Frankfurt, Germany was brief. 3 In December of 1991, I returned to CONUS and was 4 stationed at my present duty station at Fort Meade, 5 Maryland. In March of '93, my wife Brenda and I were 6 blessed with the news of our first child due in the 7 coming November. We had everything we wanted and 8 thanked God for our gifts. This feeling was soon 9 shattered with fear after the first ultrasound 10 revealed the baby had enlarged kidneys. Additional 11 ultrasounds later revealed a diaphragmatic hernia. 12 Our daughter Amanda was born on November 13 6th, 1993, with multiple birth defects which according 14 to the geneticist was classified as FRINS syndrome, 15 which is a parallel syndrome of Goldenhar. 16 Amanda underwent eight major operations, 17 approximately seven months of her first year spent in 18 the hospital. During this time, Brenda and I stood by 19 Amanda and watched her overcome every obstacle thrown 20 at her. We were anxious to learn every need Amanda 21 would have, and in doing so we questioned every avenue 22 of what could have caused Amanda's condition. 23 The one question of could this have been 24 Gulf War related was asked several times to a large 25 number of doctors and geneticists. Each time the 269 1 answer was immediately answered no. 2 Amanda's fight ended five days shy of her 3 first birthday where mismanaged care and misdiagnosis 4 was too much for her small body. 5 During the above time frame and up until 6 presently I have undergone testing for various health 7 reasons. In 1992 I noticed a cyst on my right 8 testicle. An ultrasound revealed the cyst to be 9 present. However, it was dismissed by the military 10 hospital as being of no concern, although recently 11 I've discovered in the Encyclopedia Britannica that a 12 cyst on the testicle can be the cause of birth 13 defects. 14 I also have a cyst on my left knee, which 15 again was dismissed by the military hospital as being 16 in a bad spot so they didn't want to deal with it, 17 thus having no regard for my pain. One captain at 18 physical therapy even mocked my ailment because I 19 showed good strength in my leg. 20 I have developed rashes, occasional 21 burning of semen, pain in my joints, fatigue, 22 headaches, tiredness, and a loss of vision. So far my 23 condition has not hindered my physical ability to 24 work, although my work performance has suffered. 25 In the course of the past four years, I 270 1 have seen what I consider a total disregard for the 2 men and women that fought for our country. Testing by 3 a committee that is selective and prejudiced and 4 finding true answers as opposed to the accurate 5 answers, answers that suit the government and the 6 multi-billion dollar pharmaceutical corporations, 7 leaving the unseen faces of the families behind those 8 statistical numbers to wonder why they have lost all 9 sense of security and trust from the so-called 10 humanitarian government, a government that does not 11 hesitate to assist a foreign country but in the same 12 breath fights to dispute the claims of so many of its 13 own nation. 14 Although I stand for all the servicemen 15 and women that answered the call of their country, my 16 main focus is on the children of those brave men and 17 women. These are the victims of total innocence that 18 are suffering with a total disregard of the 19 seriousness and urgency of their care. 20 In February 1994, Brenda and I attended a 21 committee hearing where I was afforded the opportunity 22 to speak. I stated that the programs were not 23 reaching the people they were meant for, and that 24 while your studies may take years, people are still 25 suffering. 271 1 After that hearing several people thanked 2 my wife and I for coming forward. One of those people 3 was a committee representative from the VA. She 4 offered her support and stated she would assist in any 5 way to get my wife and I tested through the VA. Only 6 later did we find out that the empty offer fell to the 7 system, not allowing the VA to test the spouse of an 8 active duty member. 9 After the conflict of interest with my 10 daughter's care at Walter Reed Army Medical Center, 11 there was no possible way we would go to the same 12 hospital for Gulf War testing. This type of pacifying 13 by officials has been a constant stumbling block for 14 not only my family, but for the many families we have 15 met throughout this ordeal. 16 I would like to leave you with this 17 thought while you are planning the government's next 18 course of action. Since the last committee hearing my 19 wife and I have learned that we are expecting a second 20 child. This child has also been diagnosed with the 21 same severe birth defects Amanda had with virtually no 22 foreseen chance of survival. So for anyone that 23 thinks because they have children of their own that 24 they know how we feel, let me remind you that while 25 your children sit on your lap or on your chair, my sit 272 1 in an urn on my shelf. 2 You can't possibly know how these families 3 feel or the day-to-day fear that they live in. So 4 please help these families and let these urns in my 5 house be the last. You might wish that we'd just go 6 away, but I want to clarify that parents fighting for 7 their children will never end. That's the feeling 8 that those of you with children might rightfully 9 understand. 10 I've got a couple of photos. One second. 11 CHAIR LASHOF: It's okay. 12 MR. SLAVIN: Previously the committee 13 talked about quality care. You should take a trip to 14 the hospital in D.C. to see the quality of care they 15 give. I'd like you to see the quality they have. It 16 stinks. 17 CHAIR LASHOF: Thank you very much. Does 18 anyone have any questions for Mr. Slavin? 19 (No response.) 20 CHAIR LASHOF: Thank you. We appreciate 21 your coming and understand the emotional pain you're 22 suffering. 23 I believe Reina Duval has come into the 24 room, and if so, I would call on her now. Reina 25 Duval. 273 1 MS. DUVAL: Yes, ma'am. Good afternoon. 2 I wanted to first tell you I was with the 4th Civil 3 Affairs Group. I was a lieutenant colonel in the 4 United States Marine Corps Reserves, and it was a 5 pleasure to go out and serve my country because that's 6 what I signed up for when the occasion presented 7 itself. However, I was very much dismayed and broken 8 hearted to see the treatment of Reservists while on 9 active duty. 10 One of these came across particularly in 11 the processing out of active duty where a female major 12 whose duty it was to accelerate the processing came to 13 do that at El Jubail in Saudi Arabia. I don't recall 14 the young lady's name. I do have a picture of her so 15 I would be able to find out who she is, but it 16 appeared that no one was quite concerned with the 17 medical disposition of individuals as they were 18 leaving the active service. Our people were 13 days 19 away from having 180 days active duty. We had a lot 20 of young troops who had various and sundry things 21 wrong with them, some that happened while they were in 22 Saudi Arabia, broken bones and operations that didn't 23 go well, ankles that didn't set properly, who because 24 they were young were afraid that the Marine Corps 25 would throw them out or their employer wouldn't -- 274 1 they would no longer be employable if they didn't hush 2 up about it. But they didn't get medical care coming 3 out. 4 While I was there, a rather active, 5 healthy individual -- at least I used to be -- my 6 hands would get so rigid I couldn't open my sleeping 7 bag in the morning. Now, to not be able to open your 8 sleeping bag when you're under threat is kind of 9 serious. I would stand up on my feet and couldn't 10 feel my feet and would fall down on my face. This 11 happened frequently. 12 Now, I did have a slight bit of arthritis 13 since 1972, nothing that ever prevented me from doing 14 anything. Change my diet; just don't have a lot of 15 fat and fruits and what have you; never any problems 16 with it. I go over there, and all of a sudden 17 everything is accelerated. 18 My blood pressure, I ended up with blood 19 pressure that was well above what my blood pressure 20 normally is. It's usually 90-something over 60- 21 something. My blood pressure was like 128 over 90- 22 something. It stayed that way constantly. It's been 23 that way every since. 24 When I came back I had numbness in my 25 hands. I felt as if I had my finger in a light socket 275 1 all the time. As time went on it dissipated some, but 2 just this past weekend my hands were numb. My hands 3 all the way up to here were numb. They just go off 4 and on. I can't tell you when it's going to happen. 5 It just does it, you know. There's no reason for it. 6 It wasn't until this past January that I 7 was able to get more than two hours' sleep at one 8 time. For four and a half years I have not been able 9 to sleep. I sleep two hours, get up, sleep two hours, 10 get up, sleep two hours, get up. I can't sleep, and 11 I wake up wide awake, and I walk around exhausted, 12 irritable. 13 It costs me approximately 50 to $60 a 14 week, $20 twice a week for shots. I have arthritis 15 medicine that doesn't do all that much anymore. You 16 know, I lost my voice a couple of days ago, just lost 17 my voice. It just goes off and on. 18 I mean I don't have things that make any 19 sense. It's just a bunch of irritating things that 20 keep me from feeling like a healthy person. The colds 21 that I used to get in the winter are now asthma and 22 allergies and other kinds of things, and that happened 23 as soon as I came back in the fall. It says in my 24 medical plan it is out of plan. If you're familiar 25 with that, it means that I have to pay for it out of 276 1 my pocket. So I'm paying $50 a week out of my pocket, 2 and my medicine costs me about $320 a month. Half of 3 it is not something that the medical plan pays for, 4 and we have a pretty decent medical plan. 5 I'm a stock broker in my other life, but 6 you know, this is just out of pocket all the time, and 7 I feel like I'm getting something in my chest now. So 8 tomorrow I've got to go to the doctor for the shot and 9 for that. 10 I have troops who I must say were mentally 11 very much on an even keel before going to Desert 12 Storm, and they seemed pretty much like they were on 13 an even keep when they were there. They're not on an 14 even keel anymore. I know a couple of folks who are 15 homeless. I know a couple of folks who tried to 16 commit suicide, and these were not people who were 17 slightly off. 18 I recall, too, getting anthrax shots when 19 I was overseas. They refused to put them in our 20 medical records. I insisted that something be put in 21 my medical records since I was being given some kind 22 of medicine and I didn't know what it was. I finally 23 got one corpsman to put one of my three shots in my 24 medical record. 25 All of our packages of our medicine was 277 1 collected before we left. There were just things that 2 did not make you feel like folks were taking care of 3 you. When I came back off of active duty, I was home 4 about two weeks. I was called in my office by a 5 lieutenant colonel Marine who asked me if I wanted to 6 spend 179 days on active duty. If you understand the 7 significance of that, why would someone ask me if I 8 wanted to spend 179 days of active duty as opposed to 9 176 or 181? I think there's an issue of economics 10 there, but I found it insulting. 11 In case you don't know what the 12 significance of that is, it means you don't have any 13 benefits or what have you if you don't have 180 days. 14 For my troops not to get full physicals 15 before they left active duty and they only had 13 days 16 before they had 180 days, it makes me suspicious. It 17 doesn't make you feel like the service that you care 18 for so much, the country that you care for so much is 19 taking care of you. 20 Now, I am not interested in any admin. 21 discharge. I'm not interesting in crying any stories. 22 I am just not interested in having to pay for a whole 23 lot of medical bills that I don't think was my own 24 normal physical way, my own normal health. 25 I was an extremely healthy, vigorous 278 1 person before, and now I am also seeing a therapist 2 for irritability. I have mood swings that go like 3 this, okay? One moment I'm fine. The next moment I'm 4 doing something else over here. I was not like that 5 before. 6 So I'm trying to find out -- trying to get 7 an even keel in my life, and on one occasion I spoke 8 with an individual whose husband had been to Desert 9 Storm who was in the Air Force who flew, and he was in 10 Riyadh, and I started talking to her about some of the 11 -- she asked me did I have any after effects from 12 Desert Storm, and I told her some of the things I had. 13 He had some of the same things also, and he had never 14 stepped foot in Kuwait. I thought that was 15 interesting. 16 So my own summation was the one thing that 17 we all did, it was intake nerve pills, anthrax shots 18 and all these other things that no one could quite 19 tell us what it was. I was told that if you did not 20 take the medicine, if something happened to you and 21 there was a biological threat, then your relatives 22 would not get any of the monies from your insurance 23 and so forth. So it's kind of like darn if you do, 24 darn if you don't. 25 So I kept a log of the pills I took. 279 1 There were so many of them. Even if someone was 2 trying to keep track of it, it's very difficult to be 3 in a situation where there's a lot of confusion 4 because of threat of life and to have to keep a log 5 book to know when to drink what when because it was 6 extensive, what we have to take, and I dare say 7 someone who is a private or a lance corporal might 8 have a little bit more problem trying to keep track of 9 what kind of medicine they're supposed to take when. 10 I do think and I feel in talking with my 11 troops that I served with over in Desert Storm no one 12 has an interest in bleeding the government. I know I 13 don't. I've had a lot of folks ask me, "Well, why 14 doesn't the government do something?" And I said, 15 "Well, if you have half a million people get sent to 16 war, that would break the government. I don't think 17 anybody is interested in doing that, and I don't think 18 it's very practical." 19 At the same time, if you want people to 20 serve, you take care of them. I do know for a fact 21 that my troops were up on the front. Reservists were 22 put a lot of times up on the front because they said 23 since there were going to be a lot of casualties, let 24 them go, you know, and there was a lot of resentment 25 for that. Okay? 280 1 Make it half and half. Do something 2 that's equitable. Don't make people feel that they're 3 some second class citizen. 4 It costs me -- 5 CHAIR LASHOF: Your time is up. 6 MS. DUVAL: Right. It cost me about 7 $110,000 to go to this war. Okay? And it cost a lot 8 of the troops, I know, who were students. If you went 9 a salaried employee, you did not get any salary from 10 your employer. If you were a student, some of the 11 students had to repeat the school. Some of the 12 students had to miss a whole semester. 13 Some continuity of how that is going to be 14 taken care of would have been helpful for the troops 15 that are in school, especially the young ones who 16 don't have any alternatives. 17 Okay. So I thank you very much for 18 listening to my comments, and have a good day. 19 CHAIR LASHOF: Thank you. 20 Are there any questions for Major Duval? 21 (No response.) 22 CHAIR LASHOF: If not, thank you very 23 much. 24 I think that completes all the testimony 25 for today. We will adjourn in just a minute or two. 281 1 I just want to review the schedule for tomorrow for 2 any of you. It's an open meeting. We will start 3 against at 9:00 a.m. We will begin with a briefing 4 from the Institute of Medicine of the National Academy 5 of Sciences, who will review their two studies that 6 they have been doing and reviewing the activities. 7 Then we will move into a discussion of the 8 Advisory Committee's goals, our objectives, and our 9 strategies, and essentially determine our game plan as 10 we go forward in this study. 11 Thank you all for coming, and we stand 12 adjourned. 13 (Whereupon, at 5:17 p.m., the meeting was 14 adjourned, to reconvene at 9:00 a.m., Tuesday, August 15 15, 1995.)