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UNITED STATES OF AMERICA
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PRESIDENTIAL ADVISORY COMMITTEE
ON GULF WAR VETERANS' ILLNESSES
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PUBLIC MEETING
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Monday, August 14, 1995
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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
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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
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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.
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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
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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
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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
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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
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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
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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
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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
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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.
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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
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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.
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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.)