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UNITED STATES OF AMERICA
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PRESIDENTIAL ADVISORY COMMITTEE ON
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GULF WAR VETERANS' ILLNESSES
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PUBLIC MEETING
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TUESDAY
AUGUST 15, 1995
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WASHINGTON, D.C.
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The Avisory Committee met in the
Congressional Room of the Capital Hilton, 16th and K
Streets, N.W., Washington, D.C., at 9:00 a.m., Dr.
Joyce Lashof, Committee Chair, presiding.
COMMITTEE MEMBERS:
JOYCE LASHOF, Chairperson
JOHN BALDESCHWIELER
ARTHUR L. CAPLAN
DONALD CUSTIS
FREDERICK M. FRANKS, JR.
DAVID A. HAMBURG
JAMES A. JOHNSON
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
ALSO PRESENT:
KARL T. KELSEY
DIANE J. MUNDT
GERARD BURROW
KELLEY BRIX
3
A G E N D A
PAGE
I. OPENING REMARKS 4
II. BRIEFING: INSTITUTE OF MEDICINE,
NATIONAL ACADEMY OF SCIENCES
A. COMMITTEE TO REVIEW THE HEALTH 4
CONSEQUENCES OF SERVICE DURING
THE PERSIAN GULF WAR
B. COMMITTEE ON THE DOD PERSIAN GULF 12
SYNDROME COMPREHENSIVE CLINICAL
EVALUATION PROGRAM
III. DISCUSSION OF ADVISORY COMMITTEE 57
GOALS/OBJECTIVES/STRATEGIES
IV. FUTURE MEETINGS 161
V. PUBLIC COMMENT 173
4
1 P-R-O-C-E-E-D-I-N-G-S
2 9:04 a.m.
3 CHAIRPERSON LASHOF: I believe we are
4 ready to begin this morning. I think we had a very
5 full day yesterday. We heard a great deal, both from
6 the Departments and from the Gulf War Veterans.
7 This morning, we are going to have a
8 briefing from the Institute of Medicine, the National
9 Academy of Sciences. They have had two studies
10 ongoing. One, the Committee to Review the Health
11 Consequences of Service During the Persian Gulf War.
12 And then, the Committee on the DOD Persian Gulf
13 Syndrome Comprehensive Clinical Evaluation Program.
14 And I would like to ask the people who are
15 going to present to come forward at this point. Take
16 their places at the table.
17 Dr. Kelsey, will you be starting off?
18 DR. KELSEY: Yes.
19 CHAIRPERSON LASHOF: Okay. Please
20 proceed.
21 DR. KELSEY: Thanks, Dr. Lashof.
22 I first want to thank the Committee for
23 inviting me and send greetings from John Bailar, who
24 is the chairman of the committee, who couldn't be here
25 today.
5
1 What I am going to do is very briefly give
2 you an overview of the Institute of Medicine process,
3 which is familiar to many of you. And then, describe
4 the workings of our committee, touching primarily on
5 the points from our first report.
6 As many of you know, the Institute of
7 Medicine is a part of the National Research Council.
8 And the members who serve on these committees serve as
9 volunteers. It was established congressionally and
10 operates as an independent body.
11 Our committee was established by public
12 law, a law passed in November of 1992, which was about
13 the time the oil fires were a very large part of the
14 Congressional mind. The law requires the VA and the
15 Department of Defense to enter into a joint agreement
16 with medical follow-up agency, the Institute of
17 Medicine, to fund a study to end in 1996.
18 The funding level is $500,000.00 a year,
19 as you can see, equally split between the two
20 agencies. The study really began with money arriving
21 in October of 1993. And the first meeting was held
22 then, in January of 1994.
23 We issued our first report on January 4th
24 of 1995, with the final report due approximately some
25 time around the summer of 1996.
6
1 We have an 18-member committee. And we
2 have -- I've got the members of the committee listed
3 here, with John Bailar, as I mentioned, the chair.
4 The committee has met nine times. And we are
5 scheduled again to meet in September.
6 We have members with various expertise,
7 including epidemiology, toxicology, biostatistics,
8 infectious disease and vaccination, reproductive
9 health, psychiatry, respiratory illness, immunology --
10 the areas, broadly speaking, needed to touch on the
11 health consequences of service during the Persian Gulf
12 -- in a very broad sense.
13 We have obtained information through a
14 wide variety of means, including presentations from
15 members of the government. Some of the members of the
16 panel have presented information to us.
17 We have also had an excellent staff that
18 have made inquiries broadly, and looking also through
19 the open literature, much of which has been found to
20 be actually quite lacking.
21 The public law that established the
22 committee then, really had three direct points. The
23 first one was to assess the effectiveness of actions
24 taken by the Secretaries of the Veterans
25 Administration and the Department of Defense to
7
1 collect and maintain information useful in assessing
2 these health consequences.
3 That was specifically the first point.
4 The second one was to make recommendations on the
5 means of improving collection and/or maintenance of
6 this information, again aimed at the data base issue.
7 And then finally, to make recommendations
8 as to whether there was a sound scientific basis for
9 an epidemiological study or studies for the follow-up
10 of the veterans' health. And we were also mandated to
11 discuss or recommend the nature of such study or
12 studies.
13 So that, explicitly, is our mandate. As
14 I have mentioned, we released a report on January 4th,
15 an interim report, so to speak, which was motivated by
16 the committee's sense that there were some
17 recommendations that we wanted to make prior to the
18 end of the three years, primarily because we felt that
19 there was some immediate recommendations that could be
20 utilized by the VA and the Department of Defense in
21 moving forward with some of these important and
22 pressing issues.
23 We really stress three areas, data and
24 data bases, coordination, and study design needs.
25 Specifically then, in addressing what we recommended,
8
1 we talked a little bit about the registry, which you
2 have heard quite a bit about.
3 We stressed that this was a self-selected
4 population. That the population itself was not
5 designed for research. And so, while it should be
6 reviewed and updated regularly to monitor sentinel
7 events, which really was its chief purpose. That is,
8 to monitor for sentinel events.
9 We also stressed that it would be useful,
10 certainly, for following up the Persian Gulf Veterans,
11 and definitely for future conflicts, to take a very
12 strong look at the data systems and try very hard to
13 link them.
14 This currently is very difficult, as I am
15 sure you are aware. And it's instances like this that
16 led us to believe that considerable effort might be
17 made to make the data available in linkage systems.
18 Again, we also recommended that the
19 Department of Defense Unit Location Registry be
20 completed with a high priority since, in fact, that
21 could give us both denominator information as well as
22 potential to look at exposure information.
23 We also touched on coordination and
24 recommended that funding be based on scientific merit
25 for any studies that were deemed useful while the
9
1 committee was ongoing.
2 We strongly urged that all activities
3 undergo external peer review and that they be based on
4 scientific merit. This was something that we felt was
5 very important. And there were examples of how this
6 had been lacking in the past.
7 We also recommended that active
8 coordination of the activities of various agencies be
9 undertaken to reduce redundancy. There was a
10 considerable amount of duplication in efforts early
11 on. And we felt the need to stress that coordination
12 was important in this endeavor.
13 The third point then involved study design
14 needs. What we recommended was that we define really
15 what is needed for research. We recommended a
16 population-based epidemiologic study using what we
17 have deemed really data which will be, if it is not
18 currently, available with the completion of some of
19 the work of the Department of the Defense and the VA.
20 We also stressed that information derived
21 from cluster or outbreak investigation was minimally
22 useful. And while it was important in a sentinel
23 sense, this was not the goal of future studies.
24 The mortality study that the VA was
25 conducting -- we also agree it should be extended to
10
1 observe any excess from chronic disease.
2 We use the example of lead to illustrate
3 that many of the possible events that have been tied
4 to chronic disease have not been fully investigated.
5 And certainly, lead deserves a closer look in future
6 studies.
7 We also recommended that the various
8 agencies continue their work looking for appropriate
9 models to evaluate potential interactions in terms of
10 compounds to which the troops were exposed. That is,
11 Deet, permethrin, insecticides, and vaccines,
12 pyridostigmine as well.
13 And then, we further recommended that
14 leishmania tropica be a subject of intensive research
15 as this had been a hypothesis for a considerable
16 amount of disease and represented a very serious
17 research challenge. We felt that it was very
18 appropriate to intensively study this particular
19 problem.
20 We also then addressed some of the
21 putative outcomes associated with servicing the
22 Persian Gulf War. I list here for you some of the
23 things that we have heard about from veterans and
24 which we have considered as part of our list of
25 putative outcomes associated with service.
11
1 And I won't read the list for you. I only
2 show it in an effort to let you know that the list is
3 considerable and is something that we have wrestled
4 with. We also likewise have thought about a number of
5 putative exposures. And the committee has expertise
6 in all these areas.
7 And we looked very closely then at any
8 associations between these putative exposures and the
9 outcomes. And again, I show you the list to
10 illustrate the areas that we are looking at.
11 Finally then, my last overhead really
12 involves our future plans. We continue to look at the
13 evaluation of data collection and the ongoing
14 research. We are continuing, as I have indicated, to
15 look closely at the health problems in general, not
16 just the unexplained illness associated with the
17 Persian Gulf service.
18 Our committee is charged with a broad
19 range of health consequences. And we continue to look
20 at them closely. And finally, we are also continuing
21 to look at potential exposures and outcomes for our
22 research recommendations, as part of our mandate.
23 Thank you. I will be happy to address any
24 questions that you have as well at any point.
25 CHAIRPERSON LASHOF: Thank you very much,
12
1 Dr. Kelsey.
2 I think we will proceed to hear the second
3 annual report. We'll hear from Dr. Burrow, and then
4 open it up for questions from the panel for both
5 reports.
6 DR. BURROW: Thank you. I'm Gerard
7 Burrow, the dean of the Yale University School of
8 Medicine and chairman of the Institute of Medicine
9 Committee on the DOD Persian Gulf Comprehensive
10 Clinical Evaluation Program.
11 The committee was formed in October of
12 1994 at the request of Dr. Stephen Joseph, the
13 Assistant Secretary of Defense for Health Affairs.
14 In the brief time allotted, I'd like to
15 address three topics: a description of the charge to
16 our committee since we have two IOM committees, a
17 summary of the major findings included in our first
18 report on CCEP which was released on December 2nd,
19 1994, and a summary of the major findings included in
20 our second report which we released to your Committee
21 and to the general public yesterday.
22 The charge to our committee was to
23 evaluate the protocol for the Comprehensive Clinical
24 Evaluation Program or CCEP for short, to comment on
25 the interpretation and the results that have been
13
1 obtained so for, to make recommendations relevant to
2 the conduct of the program in the future, and to make
3 recommendations on the broader program of the DOD
4 Persian Gulf health studies, if appropriate.
5 The IOM committee was comprised of 12
6 individuals with a distribution not unlike the other
7 committee, with Dr. Kelley Brix as the study director.
8 We will have held four meetings and produced three
9 reports by the end of the project on September 30th,
10 1995.
11 You have heard about the structure, as Dr.
12 Kelsey has addressed, of the selection and procedures
13 of that IOM committee. Let me simply state that the
14 goal is to make these IOM scientific reports
15 independent, authoritative, and objective.
16 The first report of this committee was
17 released on December 2nd, 1994 based on the
18 information on the CCEP that was available from the
19 DOD in October of 1994. And remember again that it
20 started in June of 1994, so this was very early.
21 The committee at that time concluded that
22 the CCEP design represented a serious attempt by the
23 DOD to evaluate and treat the health problems of
24 military personnel who were on active duty in the
25 Persian Gulf.
14
1 The committee suggested at that time that
2 attention be paid to three issues: the division of
3 labor and other resources between the local medical
4 treatment facilities and regional medical centers and
5 between Phase I, the beginning phase, and Phase II,
6 the referral phase, in the CCEP in light of the
7 enormous large numbers of CCEP patients, and in the
8 light of the apparent use of CCEP by patients to
9 obtain timely, high-quality medical care which would
10 otherwise not be as readily available.
11 We thought there should be attention to
12 the relationship between the clinical care aspects of
13 CCEP for which it was designed and research functions
14 and commented on the prominence of stress and
15 psychiatric disorders as diagnosis and/or as
16 contributing factors in the CCEP findings.
17 The purpose of the second report is to
18 comment upon an unpublished confidential draft DOD
19 report entitled "Comprehensive Clinical Evaluation
20 Program For Gulf War Veterans Report on 10,020
21 Participants."
22 That report was dated June 7th, 1995. I
23 believe you have the report that was issued on August
24 1st which was a revised report. Although the DOD had
25 not seen the IOM's second report, the final DOD report
15
1 which was released on August 1st contained several
2 revisions compared to the June 7th draft.
3 These revisions in the final DOD report
4 address some of the concerns expressed in our second
5 report, even though the IOM committee had no
6 opportunity to review the August 1st report before it
7 was published. So that -- you will see some
8 dissynchrony.
9 The IOM committee reviewed several
10 documents relating to illnesses among Persian Gulf
11 Veterans. These were authored by the Department of
12 Defense and others.
13 I would emphasize that the committee has
14 not performed its own independent research, nor
15 examined individual patients.
16 Second, the committee's second report was
17 based on the following: review of two published and
18 one unpublished report by the Department of Defense
19 which described the results of the program, three IOM
20 committee meetings that included presentations by DOD
21 CCEP physicians, review of several reports which are
22 listed in the appendix of our second report, and
23 attendance by the Institute of Medicine staff at a
24 number of meetings organized by the DOD and Department
25 of Veterans Affairs.
16
1 The CCEP has developed -- has been
2 developed as a thorough, systematic approach to the
3 diagnosis of a wide spectrum of diseases. DOD has
4 made a conscientious effort to build consistency and
5 quality assurance into the CCEP at the many military
6 medical facilities across the country.
7 The protocol has resulted in specific
8 medical diagnosis or diagnoses for most patients. The
9 signs and symptoms of many patients could be explained
10 by well-recognized diseases that are readily
11 diagnosable and treatable.
12 The committee concludes that this is a
13 more likely interpretation -- that a high prevalence -
14 - than the interpretation that a high prevalence of
15 CCE patients are suffering from a unique previously
16 unknown mystery disease that has a very large number
17 of supposedly pathognomonic symptoms.
18 A major DOD conclusion in their report of
19 June 7th, quote:
20 "To date, the CCEP has identified
21 no clinical evidence for a unique or new
22 illness or syndrome among Persian Gulf
23 Veterans."
24 The committee -- our committee urged
25 caution or more justification for this statement. As
17
1 members of the committee are aware, it is always
2 harder in epidemiology to prove that a new disease
3 does not exist than to prove that it does exist.
4 If a new or unique illness were either
5 mild or only affected a small proportion of veterans
6 at risk, the illness might go undetected even in a
7 large case series.
8 On the other hand, if indeed there were a
9 new, unique Persian Gulf-related illness that could
10 cause serious disability in a high proportion of
11 veterans at risk, it would probably be detectable in
12 a population of 10,020 patients. This pattern has not
13 been detected.
14 Dr. Stephen Josephs and other DOD
15 physicians have discussed the likelihood that at least
16 a few CCE patients had developed illnesses that are
17 directly related to the Persian Gulf service.
18 It is also likely that some CCE patients
19 had developed illnesses that are coincidental and
20 therefore unrelated to their Persian Gulf illness.
21 And in some cases, they had predated their Persian
22 Gulf service. These possibilities should have been
23 mentioned in the DOD report.
24 In summary, our overall conclusions were
25 that the program was designed primarily as a clinical
18
1 program to evaluate and treat the health problems of
2 individuals who have served their country during the
3 Persian Gulf conflict.
4 As a secondary goal, the DOD has published
5 a series of reports which describe and interpret the
6 symptoms and diagnoses of the entire group of CCE
7 patients.
8 Overall, our committee is impressed with
9 the quality of the design and the efficiency of the
10 implementation of the clinical protocol. The
11 committee has been particularly impressed with the
12 dedication and commitment of the DOD physicians who
13 actually care for the Persian Gulf Veterans.
14 The committee is also impressed by the
15 considerable devotion of resources to this program and
16 the remarkable amount of work that has been
17 accomplished in just now, a little over a year.
18 Thank you again for the opportunity to
19 address the committee. And I would also be delighted
20 to try and answer any questions that you might have.
21 CHAIRPERSON LASHOF: Thank you very much,
22 Dr. Burrow.
23 The panel is now open for questions. And
24 we can move around our group and --
25 Andrea, any questions?
19
1 (No response.)
2 CHAIRPERSON LASHOF: Rolando, any
3 questions?
4 (No response.)
5 CHAIRPERSON LASHOF: Elaine?
6 DR. LARSON: Several quick questions.
7 First of all for Dr. Kelsey, we heard
8 testimony yesterday about a couple of things I'd like
9 to ask you about. First of all, we heard testimony
10 that there were long months of waiting for
11 examinations. And I am wondering if the committee is
12 going to address anything about timeliness of data
13 collection because that has not only clinical
14 implications, but certainly research implications.
15 And one related question about what we
16 heard yesterday. That is, concern about if there is
17 a Persian Gulf-related syndrome or illness that is
18 characterized by a multiplicity of signs and symptoms.
19 And I understand from yesterday that the data
20 collection is cut off after six symptoms. Is that
21 correct?
22 DR. KELSEY: You know, Dr. Burrows may be
23 a more appropriate person for the question. Certainly
24 the issue of timeliness is critical in a lot of ways.
25 The committee certainly considered that
20
1 issue in trying to determine how to use the registry
2 information because it bears on interpretation of that
3 data. And I think that's part of our recommendation
4 that the data be treated in a certain fashion. With
5 respect to --
6 DR. BURROW: The question of timeliness
7 was why we made that comment after the first meeting.
8 I mean, they were -- the process was simply being
9 overwhelmed by individuals coming in and attempting to
10 see them. And everyone was getting a very complete
11 protocol. And that was altered in that they have
12 processed a very large number of patients.
13 The number of both symptoms and diagnoses
14 are cut off after seven, I think. If one looks at
15 these, there are a multitude of diagnoses, but they
16 vary so that there is a wide variety and --
17 DR. LARSON: Two other questions. What
18 has been the response of the DOD to your
19 recommendations from the report in December of 1994?
20 It's been seven and a half months.
21 DR. BURROW: They have been responsive,
22 have changed the direction in the way that the
23 patients are being used. In a more recent -- in the
24 first draft that we saw of the Defense Department
25 report in June, that they had gone on at some length
21
1 about environmental threat.
2 We question whether that was -- should be
3 in there. And that has been modified in the new
4 report. So that -- in fact, I think that they have
5 been responsive to the committee.
6 DR. LARSON: And last question, what's the
7 interface between your two committees? How do you
8 interact and communicate?
9 DR. BURROW: The two people on either side
10 of me are the probably major interactors.
11 CHAIRPERSON LASHOF: Phil?
12 DR. LANDRIGAN: Yes. Good morning. I'd
13 like to -- one of the recommendations that was made in
14 the report "Health Consequences of Service" -- is that
15 -- is that yours, Karl?
16 -- was a report that the Vice President
17 should chair a committee. I guess this committee is
18 an approximation of that. And that one of our tasks
19 should be to devise a plan to link data systems on
20 health outcomes with standardized forms and an
21 organized system of records.
22 One of the things that we heard repeatedly
23 yesterday were tales of lost records, records that
24 didn't get from the DOD system to the VA, records that
25 were lost in transfer from one hospital to another.
22
1 Basically a system that seems to be still operating
2 largely on paper and not in electronic form.
3 And I wondered if you -- this
4 recommendation is good, but it's also rather brief --
5 if you had any plans to further elaborate upon that
6 recommendation and spell out in more detail your
7 thoughts.
8 DR. KELSEY: Certainly. I think you've
9 hit upon a -- what we view as a very important
10 recommendation. It's something that's crucial to the
11 endeavor we're all about.
12 The word "denominator" has come up I know
13 in your meeting and obviously, if you are interested
14 in following up any of the health consequences of
15 anything like this, the absence of a denominator is a
16 big problem.
17 Our view is that in fact the linking of
18 the data systems between the Department of Defense and
19 the VA is critical in follow up of any soldiers
20 anywhere. And in our view that is very much lacking.
21 It obviously also is going to take major effort to
22 link these systems.
23 But the committee I think in its first
24 report was very much trying to say -- given the amount
25 of effort and the amount of money that has been spent
23
1 to date on this problem, it might be best to think
2 about prevention.
3 And the best way we know of to prevent
4 this type of thing is to get systems in place where
5 denominators are a little more forthcoming.
6 And obviously we feel data systems and
7 data bases exist to computerize this and to make the -
8 - not only the record, but potentially, then,
9 caregiving improved by swift and easy flow of
10 information.
11 So the Vice President's name was there, I
12 think, because of the importance we felt due to this
13 problem. And I think we'll revisit that. I have no
14 doubt that it is still an important problem.
15 DR. LANDRIGAN: Right. It would seem to
16 me that it has implications for the future too. The -
17 - I mean, the world is unfortunately -- remains an
18 unsettled place.
19 And there are likely to be further
20 deployments of American troops overseas to
21 environments that are less than friendly. And these
22 problems in one form or another are going to recur I
23 am afraid in the years ahead. And it would be nice to
24 have the system in place beforehand the next time.
25 DR. KELSEY: I mean, I think your point is
24
1 a very good one. And I'm glad you've raised it. And
2 I think you've hit upon something the committee feels
3 very strongly about.
4 DR. LANDRIGAN: One more question. I --
5 this may go beyond the purview of your committee. And
6 if it is, you'll tell me. But we heard yesterday an
7 interesting point that I had not been previously been
8 aware of.
9 And that is that the Veterans
10 Administration doesn't compensate veterans for
11 service-related disease if the disease first becomes
12 manifest more than two years -- I don't know if it's
13 more than two years after discharge from the service,
14 or more than two years after the exposure has taken
15 place.
16 But in either event, it's an approach that
17 basically cuts off from consideration within the
18 workers comp. -- the VA compensation system -- any
19 disease with long latency.
20 This is an approach, of course, that some
21 state workers compensation systems used to have. And
22 most of them dropped it in the 1950's, recognizing
23 that diseases like the diseases caused by asbestos can
24 develop as long as decades after the exposure takes
25 place.
25
1 And I wondered if you folks had given any
2 consideration -- if either of the two committees had
3 given any consideration to that point.
4 DR. BURROW: Dr. Brix just informed me
5 that we believe it's two years after leaving the Gulf
6 for individuals with unexplained illness. I mean --
7 but our committee didn't really deal with that at all.
8 DR. KELSEY: And we are really not dealing
9 with compensation issues, although it's an interesting
10 point.
11 CHAIRPERSON LASHOF: Marguerite?
12 DR. KNOX: Was there any data related to
13 that about identifiable diseases that are diagnosed
14 after the two-year periods? Do you know anything
15 about that, patients who have diagnosable diseases
16 after the two years?
17 DR. BURROW: I have no information on it.
18 DR. KNOX: I wondered if there was --
19 after your recommendation to DOD --
20 DR. BURROW: I'm sorry. Dr. Brix just
21 said that we do not think there is any limit on that.
22 It was just for the unidentified diseases. I mean
23 that is our understanding. In other words, if you
24 have a specific label, then that time limit doesn't
25 hold.
26
1 DR. KNOX: Still, I think veterans are
2 having to prove that the disease was related. And
3 without any patterning and aggregating of certain
4 health diseases, that's very difficult to prove.
5 So I hope there will be some long-term
6 studies looking at patients who have been diagnosed
7 with neoplasias, either benign or malignant, that have
8 occurred in Gulf War Veterans. And I don't think that
9 we've really looked at that very well.
10 DR. BURROW: I feel like a puppet.
11 DR. KNOX: Sorry.
12 DR. BURROW: Both the DOD and the Veterans
13 Administration have information on that.
14 CHAIRPERSON LASHOF: I have no problem
15 with Kelley Brix and Diane Mundt also contributing and
16 speaking and not having to puppet through. We are
17 informal. And we certainly -- it's within our
18 protocol to -- please, I welcome Kelley and Diane to
19 freely speak for themselves.
20 Yes?
21 DR. BRIX: Dr. Knox, you said you were
22 interested in neoplastic activities in particular? I
23 believe that both the Department of Defense and the
24 Department of Veterans Affairs have data on both --
25 particularly this have malignant cancers.
27
1 And they have tables in their -- in the
2 materials that they passed out in the August 1st
3 report, as well as the DVA's most recent report has a
4 list of all the known patients diagnosed with cancer.
5 And all the different types.
6 DR. KNOX: Could you tell me if the exam -
7 - veterans who did not receive the recommended
8 Comprehensive Clinical Evaluation -- I guess, could
9 those veterans go back and have that comprehensive
10 evaluation? Those that did not receive it early on?
11 DR. BURROW: There are two kinds of
12 veterans: one, people who served in the Persian Gulf
13 and are still on active service, and others who have
14 been discharged. If they have been discharged, it
15 would be done through the Veterans Administration.
16 DR. KNOX: So it would be available, is
17 your understanding?
18 (No response.)
19 DR. KNOX: Could you tell me about the
20 environmental toxin, the serum assays that maybe were
21 recommended for that evaluation?
22 (No response.)
23 DR. KNOX: Were there any?
24 (No response.)
25 DR. KNOX: For instance, lead poisoning or
28
1 depleted uranium for those patients that complained of
2 that?
3 DR. KELSEY: Yes. We -- the issue of lead
4 and depleted uranium were both addressed in our first
5 report. And we're -- we recommended that, I think, a
6 little bit more work be done around those issues.
7 The lead levels that were initially drawn
8 clearly indicated that there needed to be some follow-
9 up, certainly of some individuals. And that was one
10 of our recommendations.
11 In addition, the depleted uranium issue
12 also left a small cohort, but albeit a defined cohort
13 that could be followed. And we recommended that as
14 well.
15 There is a serum bank -- that you referred
16 to serum. There is a serum bank. And obviously, this
17 can provide a resource for a lot of research. Areas
18 that we touched on where that might be useful include
19 leishmaniasis and other infectious disease. Exactly
20 what's ongoing at the moment, I think, is unclear to
21 me as I sit here. But I'm certain that that's a
22 resource that many people are thinking about.
23 DR. BURROW: Perhaps it's worth explaining
24 -- the initial in the program -- the initial -- if
25 somebody identifies himself and wants to be cared for,
29
1 that there is a physical -- this Phase I, the primary
2 care treatment, which is probably equivalent to a very
3 thorough executive physical.
4 If then things are identified in problems
5 or areas -- it is -- they are referred on to regional
6 centers where it's really case finding so that it is
7 not necessarily screening for every environmental
8 toxin.
9 But if there were evidence that the
10 individual might have lead poisoning or have a uranium
11 slug, it would be looked for. So it was really case
12 finding rather than screening.
13 CHAIRPERSON LASHOF: Dr. Hamburg?
14 DR. HAMBURG: I wonder whether there are
15 plans for a continuing role for the Institute of
16 Medicine in relation to the Gulf War health problems?
17 And if so, what the nature of that role is likely to
18 be?
19 DR. BURROW: As far as our committee is
20 concerned we are in negotiation with the Department of
21 Defense to continue our committee and we should know
22 then -- obviously by the end of -- that when it ends.
23 DR. HAMBURG: Thank you.
24 And the other committee?
25 DR. KELSEY: We're to issue our final
30
1 report in 1996. And at that point this committee will
2 be disbanded. With respect to other activities of the
3 Institute of Medicine -- Diane?
4 DR. MUNDT: None.
5 DR. KELSEY: As far as I know, there's
6 none planned.
7 DR. HAMBURG: I wonder if there has been
8 any consideration of the areas not covered in the
9 mandates given to the two committees? There've been
10 occasions when there has been concern that the IOM was
11 not really in a position to look into an important
12 problem because it didn't fall within the mandate of
13 either committee, implying that perhaps there should
14 be some new initiative or conceivably even a broad
15 gauge board to address these problems over the longer
16 term.
17 DR. BURROW: Well, I think in answer, I
18 mean, our study is really in response to a contract
19 with the Department of Defense so that we are limited
20 in those areas.
21 CHAIRPERSON LASHOF: Dr. Mundt?
22 DR. MUNDT: To my knowledge, there is no
23 information or no plans for such a board, although it
24 is an excellent idea.
25 DR. HAMBURG: Well, I raise the question
31
1 because it seems to me that this Committee is going to
2 have to think about the question of whether some kind
3 of independent scrutiny of the highest level of
4 objectivity and penetration can be created to go
5 beyond the life of this Committee.
6 These problems are not likely all to go
7 away any time soon. We heard about long latency
8 diseases and so on. I think we will have to address
9 that. And obviously the IOM is an institution that
10 comes to mind as suitable for that role.
11 I suspect -- at least while speaking for
12 myself, I think there will be a continuing need for
13 independent non-governmental scrutiny of the highest
14 caliber over an extended period of time. And that's
15 why I raise the question of an IOM board as one
16 possibility.
17 CHAIRPERSON LASHOF: Well, I would like to
18 ask Dr. Burrow -- the Comprehensive Clinical Protocol
19 Exam -- these are done at DOD facilities on active --
20 people who are still actively in service? Or, those
21 who have been discharged, the veterans who have been
22 discharged, are they included in this common protocol
23 or not?
24 DR. BURROW: No. They are not. I mean,
25 this is specifically a DOD protocol. And I meant to
32
1 correct something because I may have left that
2 impression -- is that if it's a veteran who has been
3 discharged, they could go to the VA hospital, but it
4 would not be part of the CCEP protocol.
5 DR. KNOX: So let me just say that of the
6 700,000 veterans who served in the Persian Gulf,
7 according to the data that they have given us in our
8 notebook, 587,000 have separated from the military.
9 So you are looking at a huge population that has
10 medical services unavailable to them.
11 CHAIRPERSON LASHOF: And it also raises
12 the question of the selection of this population being
13 those that are still on active duty when it is
14 somewhat logical that many of those that would be ill
15 have already left service. Can you tell me how
16 representative you feel this eventual 20,000 will be
17 of the total group that served in the Vietnam War?
18 DR. BURROW: Of the Persian Gulf --
19 CHAIRPERSON LASHOF: Of the -- sorry. The
20 Persian Gulf. Apologies.
21 DR. BURROW: I think that you raise the --
22 one of the issues that the committee raised when they
23 start making comparisons. I mean, this is a self-
24 selected group of individuals who have felt that they
25 -- who were on active duty and felt that they had
33
1 problems and called to do this.
2 So it is a self-selected sample. And it
3 makes it difficult in terms of what the control would
4 be. The issue of others -- I don't -- yes -- I'm
5 saying that the VA has a similar program, but that's
6 not the question.
7 CHAIRPERSON LASHOF: Well, that -- I'll
8 ask that question to accommodate Diane. In the VA
9 program, are they following the same protocol? And do
10 you have any information of where they are in theirs?
11 How many they have done and whether the data looks
12 similar or dissimilar?
13 DR. BRIX: Yes. There's a similar
14 protocol. And in fact, it is my understanding --
15 someone from the VA or the DOD should speak up if this
16 isn't correct -- is that they worked together to
17 develop the protocol that we have been examining for
18 the CCEP. And the VA has a similar protocol. They
19 even call their protocol Phase I and Phase II.
20 I think you heard yesterday something
21 about the Persian Gulf Registry Exam. That's also --
22 that's called Phase I. So they have a similar Phase
23 I. And there are many thousands of people who have
24 been through that program -- is my understanding.
25 They also have a Phase II. Only a small
34
1 handful have been through their Phase II as far as I
2 understand. But again, I'm not as familiar with the
3 VA program as the DOD program. But they are eligible
4 for care.
5 CHAIRPERSON LASHOF: Those that have gone
6 through the Phase I -- if this is beyond you we can
7 just ask staff to get us further information,
8 obviously, direct from VA -- does it appear similar
9 that the pattern of illness and symptom diagnoses --
10 similar among those that have gone through the VA
11 protocol to the DOD protocol?
12 DR. BURROW: I don't think we really know
13 enough to comment.
14 CHAIRPERSON LASHOF: Okay. Fine.
15 Dr. Custis?
16 DR. CUSTIS: I would like the Committee
17 not to be -- not to have the impression that the VA
18 healthcare system is a paper system. It's highly
19 automated. The patient treatment file is only one of
20 many computerized systems. The DHCP, the
21 Decentralized Hospital Computer Program got started
22 something like 30 years ago and today compares
23 favorably with the private medical sector as far as
24 computerized data is concerned.
25 CHAIRPERSON LASHOF: Do you have any
35
1 questions to --
2 DR. CUSTIS: I have no questions for the
3 panel.
4 CHAIRPERSON LASHOF: Dr. Caplan? Art?
5 DR. CAPLAN: I guess I would like to -- I
6 would like to get clearer about making sure that the
7 information that needs to be collected about this
8 problem is getting collected.
9 In some ways our charge is to make sure
10 that things are going well and that all that can be
11 done is being done to identify the nature of Gulf War
12 illness and problems, and set up infrastructure to do
13 things about it, both in the future and to compensate
14 those who may have been injured or become ill now.
15 And one of the things I find troubling is
16 this confusion that's broken out just over the past
17 couple of days about well, is there, is there not Gulf
18 War Syndrome?
19 And I'm looking at the response to the
20 report that you issued yesterday, the August 7th
21 report, in which you commented on the fact that there
22 was not enough evidence for the statement that there
23 was not unique illness or syndrome among Gulf War
24 Veterans.
25 My first question to you is: This report
36
1 appears to have come out after you saw an earlier
2 draft. Could you have seen a second draft? Is there
3 some reason you didn't see that before this one came
4 out? What led you to have to comment after the fact
5 on this second version of the DOD report?
6 DR. BURROW: Our comments were directed to
7 the first version. And the DOD -- I can be corrected
8 by the people next to me -- wanted their report -- I
9 mean, it was a contract -- early so that they would
10 have this -- so that we did not see the second report.
11 And the IOM has a review process it goes
12 through so that, in fact, the IOM by the time we had
13 issued our report, they had already issued the second
14 report without either of us seeing the issue. Is that
15 --
16 CHAIRPERSON LASHOF: John?
17 DR. CAPLAN: I --
18 CHAIRPERSON LASHOF: Oh, I'm sorry. If
19 you have another question, please, Art?
20 DR. CAPLAN: Is there a need then to make
21 sure that that sort of situation is rectified? In
22 other words, if we'd had an advisory board out there
23 trying to watch the protocol, and we're getting
24 announcements that X doesn't exist, and then we have
25 to have retractions that say well, maybe X exists.
37
1 And there are various methodological
2 reasons to think that X might exist, that doesn't seem
3 to be an optimal situation.
4 DR. BURROW: I think for an ethicist
5 that's a fair statement.
6 (Laughter.)
7 DR. BURROW: Let me go on and add. I
8 mean, you are reading the first sentence that was
9 lifted out of the paper. I mean, we do go on in that
10 report to say that if there were, as I mentioned
11 earlier -- as I said, a disability with a high
12 proportion of veterans at risk, it would probably be
13 detectable.
14 I mean, it was the need to couch the
15 statement that the DOD -- in some terms that would
16 leave it open. And it would certainly have been
17 better to be able to work that out because I think a
18 lot of it was simply a matter of wording.
19 DR. CAPLAN: Let me just ask one more
20 question about the protocol because this is important.
21 Again we want to make sure that people are clear. I
22 think we owe it to the veterans and to all Americans
23 that we not give impressions that are false about what
24 does or doesn't exist with respect to the illness and
25 the disease.
38
1 And it plays to my philosophy interest a
2 bit. We've got claims we made about who is ill,
3 what's a syndrome, what's a disease, what's a cluster
4 of diseases. And all of these things swirl around
5 this thing called Gulf War Syndrome which is a lot of
6 things -- a lot of balls up in the air.
7 My question is: When you looked at this
8 protocol, in particular the Defense Department one,
9 we've heard one comment that it may be a sampling
10 problem to talk about Gulf War Syndrome in general.
11 We want to be careful that we always
12 qualify that and say on active military. There
13 doesn't appear to be a description adequate to say we
14 have a single disease going on.
15 But what I am asking is: Are you
16 confident, even within that protocol for the active
17 military personnel, that the reporting by soldiers --
18 they're going to feel comfortable identifying
19 themselves to go in for the physicals?
20 Are you satisfied that the comparison
21 group that was used was adequate? In other words, can
22 you tell us a little bit more -- I don't mean for you
23 to rehash the whole report -- might be improved upon
24 in terms of methods for this DOD study?
25 DR. BURROW: Well, it would have been at
39
1 the beginning to really have a comparable control
2 study. And I tried to -- we emphasized in the report
3 and the committee felt that -- we felt that in terms
4 of case finding, I mean, a responsibility to take care
5 of individuals who had reported themselves not well,
6 if you will, who had been on active duty -- that the
7 Department of Defense had merely set up a system of
8 good quality controls and delivering the best possible
9 care in an attempt to make a diagnosis of specific
10 diseases.
11 Where one gets into less firm ground --
12 and I think the questions that our co-committee talks
13 about when you talk about the comparison groups
14 because then you have to decide who are these
15 comparison groups.
16 And I think one has to look at this as a
17 protocol primarily to deliver care to that group of
18 individuals. Hopefully that answers some of the
19 things you've mentioned.
20 CHAIRPERSON LASHOF: John?
21 DR. BALDESCHWIELER: I think it's
22 important to bear in mind that -- the potential for
23 causative factors that perhaps have not yet been
24 identified. And typically in assays that one performs
25 you only find those things that you look for.
40
1 That is, with the extremely sensitive
2 types of immune assays, for example, you only find
3 those things that you choose to look for. So it's
4 crucial, it seems to me -- the process of postulating
5 potential things to look for is a crucial part of the
6 process.
7 Do you have some thoughts as to how one
8 composes the list of things to look for? Or how well
9 that has been done in fact in this search?
10 DR. KELSEY: Well, I think that's well
11 put. And one of the goals of our work is to look
12 exactly at how questions are asked. Because as you
13 say, you only find what you look for.
14 If you look well, you are likely to find
15 the things that can be repeated and the things that we
16 want to be concerned about. If you do a poor job of
17 looking, you are likely to find things that may not be
18 so important to go after.
19 So I think one of our real concerns, and
20 in particular, one of the motivations for issuing a
21 first report was to stress that people think very hard
22 about how they are going to look.
23 We were impressed with the poor job, if
24 you will, that had been done with coordination and
25 with initial research. And this is why we felt the
41
1 pressing need to issue some recommendations for
2 ongoing work.
3 And I think your questions are good ones.
4 And they are ones that we are very concerned with.
5 And our committee has tried to cast the net broadly.
6 But the mandate is really about the health
7 consequences of the war. And I don't know if you can
8 get any broader than that.
9 So we're -- we're trying to cast the net
10 broadly and begin by really hoping that as research
11 goes forward the quality can be maintained so that, in
12 fact, we can really uncover that which we need to
13 follow up.
14 DR. BURROW: I would just simply say that
15 -- to go back to my earlier statement -- that it's
16 easier to find a disease that is there than a disease
17 that isn't there. And part of the issue that Dr.
18 Caplan is raising is exactly this question.
19 I mean, can we say that there isn't
20 something there that we haven't found. No. And so --
21 that we haven't been able to find it with as complete
22 a study as, I think, that they could do. That needs
23 to remain an open question. And it's part of the
24 research.
25 DR. BALDESCHWIELER: But quite
42
1 specifically, does there exist an operational list of
2 things that are being tested for? And what's on that
3 list? I mean, a list of pathogens? Of potential
4 environmental factors?
5 DR. BURROW: No. Let me repeat that this
6 was self-reported individuals who said they were
7 unwell, who had an initial screening, a very thorough
8 screening. And if one could not make a diagnosis,
9 they were referred on in that at that time it was case
10 finding.
11 In other words, if they complained of
12 musculoskeletal disease, that they were thoroughly
13 evaluated for anything that was wrong in the
14 musculoskeletal system. There was not a screening of
15 any -- of the whole panel of pathogens or viruses or
16 environmental toxins.
17 DR. CAPLAN: But what -- would that be a
18 useful component of a future program?
19 DR. BURROW: I think it would be a better
20 -- part of a research program, I mean, set up to
21 specifically screen, looking for this unit
22 identification. There a number of ways of getting at
23 this.
24 DR. BRIX: I could add one thing about the
25 way the CCEP is designed. In the referral phase, if
43
1 the person has not been able to reach a diagnosis by
2 the time they have gone through the initial
3 examination, they go to a regional medical center.
4 And there is a set of tests that is
5 mandated for a variety of symptoms. And those
6 symptoms were chosen because they are the types of
7 symptoms that people are frequently complaining of.
8 So, for example, for fatigue there is a
9 list of mandated tests that anybody who goes through
10 the regional medical center, who has fatigue gets
11 those tests and those specialty -- subspecialty
12 consultations.
13 Likewise, if a person has headaches, they
14 get a mandated neurological consultation and a CAT
15 scan of the head and so on. So there is a protocol
16 that's laid out very specifically for those symptoms
17 that are very common in this group.
18 CHAIRPERSON LASHOF: Further follow-up
19 questions?
20 DR. LARSON: Yes. A follow-up question.
21 Really, I don't know if there is anybody on the panel
22 who can answer this, maybe Dr. Stoto or somebody from
23 the Institute of Medicine in the audience.
24 From Dr. Hamburg's question, the Institute
25 of Medicine for years has been the repository of the
44
1 data base called the Medical Follow-up Study, which
2 includes data from several wars. I think from World
3 War II, the Korean Conflict, Vietnam.
4 And I think there are some limitations, as
5 I understand it. In the past it has been a data base
6 of primarily, if not completely, white males.
7 And given that that's fixed, and that the
8 data base is expanded to be more representative of who
9 is in the wars, is that a potential source of -- or a
10 repository for data on the Persian Gulf Conflict that
11 could be used for long-term follow-up?
12 I'm not even sure what's in that data
13 base. Maybe you could give us some information.
14 DR. MUNDT: We -- I am, in fact, staff in
15 the medical follow-up agency. We do studies in
16 veteran populations on cohorts of data that have been
17 assembled over the years for various purposes.
18 And you are correct. They are primarily
19 in white male veterans. There are projects being
20 conducted in atomic veterans and in veterans exposed
21 to microwaves, etc.
22 The cohorts are formed primarily to do a
23 specific study.
24 There are several hundred cohorts. We
25 have no cohort data related to Persian Gulf Veterans
45
1 and Persian Gulf service at this point in time.
2 DR. LARSON: But you could?
3 DR. MUNDT: Potentially, yes.
4 CHAIRPERSON LASHOF: David?
5 DR. HAMBURG: I want to ask about the
6 possibilities for a beneficial interplay between IOM
7 committees and the government agencies, particularly
8 the DOD. In part, my question articulates with what
9 Arthur Caplan raised a few minutes ago.
10 The question is on the one hand
11 stimulation by IOM committees -- for the committees
12 from the agencies that have problems and bring the
13 problems to the IOM and say please help us figure this
14 out.
15 But on the other hand particularly
16 focusing on the feedback from the IOM committees to,
17 let's say, the Department of Defense, not only with
18 respect to procedure as we heard -- is this curious
19 disjunction in procedure in the past couple of months
20 about the latest version of the DOD report, which I
21 find puzzling and troubling frankly, but putting that
22 to one side -- substantive issues, for example, in
23 your report, Dr. Burrow, your very interesting report,
24 on page 13 and 14, committee comments having to do
25 with the likely -- say that it's likely that at least
46
1 a few CCEP patients have developed illnesses that are
2 directly related to their Persian Gulf Service.
3 And it gives some categories. And your
4 third category is psychological stress during or
5 immediately after the war.
6 And you go on to say the basis for
7 research in many fields, of course -- it's important
8 to understand that such stressors produce adverse
9 psychological and physical effects that are as real
10 and as potentially devastating as chemical or
11 biological stressors.
12 And you comment that the psychological
13 stressors of the Persian Gulf war have been
14 insufficiently examined by the DOD. That seems to me
15 a very important issue, a very constructive suggestion
16 that you make.
17 There is by now a vast body of research on
18 the biology and psychology and severe stress that it
19 appears not to have been adequately taken into account
20 recently. Although I may say the DOD has a
21 distinguished tradition of research in this field.
22 For example, the Walter Reed Army
23 Institute of Research going back to the 1950's. But
24 it seems to me that's an example. There are other
25 examples in here of a possible connection between the
47
1 IOM's work and the DOD.
2 Is it possible in real time to give them
3 feedback perhaps in more depth beyond the printed page
4 that would help the DOD to address the stress problem
5 or other currently neglected problems that are really
6 salient and should be addressed?
7 DR. BURROW: I think a great deal of that
8 interchange went on at our committee meetings, which
9 really involved interacting with the physicians that
10 were carrying out the program and a number of
11 individuals from Walter Reed and -- specifically in
12 regard to psychological stressors.
13 So I think that this is going on. I mean,
14 the committee disjunction, if you will, or committee
15 report disjunctions, needs to be resolved.
16 But I think that my -- a personal comment
17 -- that they were trying very hard to look for
18 physical causes and to attempt not to focus as
19 strongly on the psychological stressors though they
20 were aware that those were there.
21 CHAIRPERSON LASHOF: I'd like to ask Dr.
22 Kelsey whether -- we heard yesterday that there a
23 number of different epidemiologic studies going on.
24 And we did quiz the panel as to the comparability of
25 those different studies and the ability to pool the
48
1 data from all of them.
2 Certainly you've been looking at that
3 issue and at the whole -- how scientific and solid the
4 epidemiology is. I wonder if you would comment upon
5 that, and how you feel about the fact that there are
6 multiple epidemiologic studies, and how comparable
7 they are, and how well that agencies are really
8 working together to make them more comparable.
9 DR. KELSEY: Well my -- chiefly what I
10 would say is we've been provided protocols for many of
11 the ongoing studies. And we're looking at the
12 questions that they specifically want to ask.
13 It's obviously part of our mandate. And
14 I think we've urged that these things be done in a
15 coordinated fashion, subject to peer review. And I
16 think that issue is important.
17 And it's something we look at. And
18 obviously something very important for you to look at.
19 Beyond that I don't think I can comment on specifics.
20 CHAIRPERSON LASHOF: I guess part of my
21 question is: You made a series of recommendations.
22 And we clearly are going to have to look at whether
23 your recommendations are being followed. And if you
24 have any insights or ideas at this point about how
25 well -- or any suggestions for us as we look at that,
49
1 it would be helpful.
2 DR. KELSEY: Sure. And I think we'd be
3 happy to be in contact with the committee at any point
4 as well. For us, obviously, it's an ongoing process.
5 And it's -- those questions are very important. And
6 we are actively searching for and asking for protocols
7 and any information that you can provide.
8 And I think the presence of this Committee
9 has made a lot of information available to us more
10 rapidly than it might otherwise have. So it's been
11 useful for us as well. But I think that Dr. Mundt
12 would be happy to provide anything that we have that
13 you can use.
14 CHAIRPERSON LASHOF: Thank you.
15 Elaine?
16 DR. LARSON: It's pretty safe to say, I
17 think, that the resulting -- could be acute
18 musculoskeletal disease, stress, and infectious
19 disease from the indigenous area.
20 That's pretty safe. And that is part of
21 any war. What's missing here is any specific comment
22 about the testimony that we heard yesterday related to
23 autoimmune symptoms and immune dysfunctions of various
24 sorts. And I assume that's what some people refer to
25 as the Gulf War Syndrome.
50
1 You haven't commented that in your report.
2 Did you hear testimony on that? Did you see evidence
3 that that's being examined or looked for?
4 DR. BURROW: Well, I can only go back and
5 repeat that the people who had complaints -- and they
6 are listed -- were examined and if not satisfied by
7 the physician, were again looked at.
8 And what came out were specific diagnoses
9 and not large numbers of any particular autoimmune
10 disease or anything else. So the -- that in that
11 structure, nothing of this sort surfaced in any number
12 that was different than one would expect.
13 And by saying that, let me say there were
14 people who had lupus arimethrotosis, but may have had
15 it before. I mean, if you examine that many people,
16 you are going to get people with illnesses. But there
17 wasn't anything that was particularly out of the
18 ordinary.
19 CHAIRPERSON LASHOF: Dr. Custis?
20 DR. CUSTIS: In connection with Dr.
21 Lashof's question, I wonder, Dr. Mundt, would you
22 repeat your definition of the term "coordinated
23 effort?"
24 DR. MUNDT: I think that the term
25 "coordination" is something that our committee
51
1 discussed at length. And I believe that the committee
2 has looked at coordination in terms of coordinate the
3 activities and the interactions and the participation
4 of the various agencies on particular projects.
5 The word "coordination" -- it's become our
6 understanding -- relates more to the knowledge of or
7 the awareness of various activities. So I think that
8 the word "coordination" may need to be defined
9 explicitly, both in terms of how our committee
10 understands its use as well as how the various groups
11 that we are dealing with are defining the word
12 "coordination."
13 CHAIRPERSON LASHOF: Would it be correct
14 to say that we are talking about coordination and not
15 integration, and maybe we need some more integration
16 of the efforts? Or not?
17 DR. MUNDT: That's really not my place to
18 answer.
19 CHAIRPERSON LASHOF: That's our job, I
20 guess.
21 Any further questions for the --
22 Yes? Phil?
23 DR. LANDRIGAN: Karl -- for Dr. Kelsey --
24 Karl, on page 12 of your report you make the very
25 sensible recommendation that the VA and the DOD should
52
1 determine the specific research questions that need to
2 be answered and should develop methodologies etc. to
3 pursue those questions.
4 It sort of follows up on Dr.
5 Baldeschwieler's question. Have you given any thought
6 to what additional items ought to be on the list?
7 We've obviously heard about some: depleted uranium,
8 leishmaniasis, lead. Any others that you would like
9 to offer specifically?
10 DR. KELSEY: Well, I can comment that I
11 think our mandate is broad. And so that this second
12 report will be much broader than the first. This
13 really was an attempt to direct hypothesis-driven work
14 in the interim. And to the extent that we've done
15 that, we've accomplished our goal with that report.
16 I can -- I can't give you specifics other
17 than to tell you that clearly our second report will
18 be much more broad and address other health
19 consequences.
20 DR. LANDRIGAN: Yes. We learned yesterday
21 that there were -- there either has started or will
22 shortly be starting in the state of Iowa an
23 examination of 3,000 veterans, half of whom were
24 deployed in combat areas, and half of whom were in the
25 service at the same time, but not in combat areas.
53
1 And it seems like a nice start in that
2 direction. It would also be good, though, if that
3 effort were energized by specific hypotheses before it
4 began in fact.
5 CHAIRPERSON LASHOF: Other --
6 DR. KNOX: I just have one more question
7 as to whether you made a recommendation, maybe, about
8 the predeployment physical, now that you've looked at
9 exit physicals from being deployed?
10 DR. BURROW: Well, I think actually it's
11 an -- if I understand the question -- it's an
12 interesting -- because clearly, I mean, there was a
13 war going on. And it's a bad way to set up an
14 experiment.
15 But if, in fact, one really thought about
16 this kind of thing before going in, there were ways in
17 terms of unit identification -- who got vaccinated,
18 when, medications that would be enormously helpful
19 later. So I think that's an area of interest. We
20 have not dealt with that. But it certainly is an
21 area.
22 DR. KNOX: One of the problems that I
23 recognize -- when you look at this study and you look
24 at the number of illnesses that the reserve components
25 complained about, their physicals on active duty
54
1 reserve are only every four to five years unless they
2 are over the age of 40. So that may be some of the
3 reason for the increased number of illnesses in that
4 group.
5 DR. BURROW: Very good.
6 CHAIRPERSON LASHOF: Art?
7 DR. CAPLAN: This is for Dr. Kelsey. In
8 your sort of overall examination of the issues -- one
9 of the things that came up yesterday in the testimony
10 we heard is that people face tremendous problems if
11 they are discharged in terms of insurance coverage and
12 follow-up.
13 I just had two questions for you. One,
14 are you looking at all at the ability of the
15 investigators to protect subject privacy and
16 confidentiality in the various inquiries that are
17 being made?
18 And, two, are they doing a good job
19 warning people about what may happen to them if they
20 get identified as having a problem or syndrome or
21 chronic condition that -- at discharge.
22 In other words, are they -- can you make
23 some recommendations not only about what's there, but
24 about the protection of the subjects of the
25 populations that are involved in some of these studies
55
1 since there clearly are consequences that aren't
2 always beneficial if you are identified as being ill?
3 DR. KELSEY: An excellent point. The
4 overarching fragmentation of healthcare really does
5 not lend itself to endeavors like the epidemiologic
6 examination of this cohort of 700,000. And I think
7 insurance is but one of the many enormous problems.
8 We have discussed at length -- and there
9 is -- it's obviously important both for the individual
10 patient and for caregiving, as well as for data
11 gathering and integration of the resources so the
12 economics of healthcare play a very big role here.
13 In addition -- and that's from our
14 standpoint. It will come out in the report because
15 that's a very important part of this. The other issue
16 of informed consent, if you will, for participating in
17 studies is a concern. And it's one that we have to
18 take into account when we advocate linking records.
19 It's, as you know, a complex problem. At
20 this point, I think we are advocating linking medical
21 records and then dealing with these problems in the
22 way that epidemiologists deal with medical records.
23 That's, I think, the model. And that's what, at this
24 point, we are really thinking about.
25 Going beyond that would require,
56
1 certainly, a rethinking of how one deals with this
2 data because it is a massive data base. And to the
3 extent that a massive data base is being put together
4 with identifiers, that's a critical question.
5 And it's further a critical question when
6 you deal also with the armed services because their
7 confidentiality has an entirely different meaning. So
8 I think your point is a good one. It's one that we
9 have thought a lot about. It certainly will be in our
10 report.
11 CHAIRPERSON LASHOF: Are there any other
12 questions?
13 (No response.)
14 CHAIRPERSON LASHOF: If not, I want to
15 thank you all very much. This has been helpful. And
16 there is no question that we will be in touch. And
17 our staff will be working closely with Kelley and
18 Diane. And any further suggestions you have for our
19 work are certainly welcome. Thank you very much.
20 The committee would like to take a stretch
21 just right here just for a couple minutes.
22 (Whereupon, the proceedings went off the
23 record at 10:14 a.m. and went back on the
24 record at 10:22 a.m.)
25 CHAIRPERSON LASHOF: Can I ask the
57
1 Committee to take their places again?
2 Well, I think we've had a very thorough
3 briefing now for a day and a half. Now we have to
4 face that task of deciding just what our job is and
5 how we are going to do it. And develop some type of
6 time line for accomplishing our goal.
7 What I'd like to do is start first with a
8 discussion of the elements of the charter. Each of us
9 has reviewed the charter ourselves. And each of us
10 discussed it at the time we agreed to serve on this
11 Committee.
12 But we haven't had a chance to discuss it
13 as a Committee, as a whole, and make sure that we all
14 interpret the charter in the same way. Or, if we have
15 differences in views about the charter and our
16 responsibilities, we need to air those and hopefully
17 reach a consensus as to what we need do.
18 If you'll turn in your briefing book to
19 tab B -- the charter is in tab B. And we might all
20 just take a look at it at this point. I think item C
21 is clearly where we are at, at which the duties of the
22 Committee are solely advisory. That, I think we all
23 understand.
24 We have no implementing authority. But I
25 think the weight of our advice -- it will carry a
58
1 great deal of weight. Let me put it that way. I
2 think there is no question that the President, the
3 First Lady, the heads of the departments, are looking
4 to us for advice. And I think they will be
5 responsive.
6 The areas at which we are supposed to look
7 are the research, which we have heard a fair amount
8 about this morning; the coordination efforts we also
9 discussed briefly and again this morning.
10 We are to look at medical treatment. In
11 that regard we have heard primarily from the veterans
12 and their families. We are to look at the outreach
13 issues, which we have had some brief questions about
14 and have been touched on.
15 And we are to look at the external reviews
16 and the -- which really refer to the IOM and others
17 and whether those have been implemented. Look at the
18 NIH reviews and the Health Technology Assessment
19 reviews.
20 We are to look at what possible risk
21 factors. We are again to look at the question of
22 chemical and biological weapons. My view of how we
23 look at those -- well, how we look at them will be the
24 subject of our major discussion.
25 I think that really covers a broad range
59
1 and leaves out only one thing. And I think it's
2 important to note what it does leave out. And it
3 leaves out the issue of compensation. It is not the
4 responsibility of this Committee to look at issues of
5 compensation.
6 And it's also my understanding of the
7 charge that as we look at each of these issues, we
8 will not be undertaking any new research. But rather,
9 we will be reviewing everything that is ongoing and
10 make recommendations about new research.
11 But within a year and a half, which is the
12 life of our Committee, it's clear that we could not
13 launch new research activities in the traditional
14 sense of research.
15 Digging into and researching what has been
16 done in that sense of research is obviously
17 appropriate. Listening and hearing and asking
18 questions and searching, rather than researching, may
19 be the way to put it. Well, that's enough said from
20 me.
21 Let me ask any of the members of this
22 group to raise any questions, feelings, their
23 interpretations of the charter itself.
24 Elaine?
25 DR. LARSON: Two comments. First of all,
60
1 it -- one of the other things that is missing is any
2 consideration about the sort of, if you will, ethical
3 or social implications of all this and whether there
4 are processes in terms of the way people were handled
5 or treated that need to be considered. And we might
6 want to talk a little bit about whether we are
7 interested in making any comments about that.
8 Secondly, obviously, we were reminded
9 several times yesterday that we are the fifth group --
10 and there is a clear mood of discouragement if not
11 questioning about whether any of these are going to be
12 that useful.
13 The first thing we've got to do is make
14 some kind of a chart and figure out who has done what
15 in each of these areas, collect the information,
16 collect the committee reports. That's a staff
17 function.
18 We have some of them. I don't think we
19 have all of the information. And then see where it is
20 that we really can have an oversight function and make
21 some statements that will be of benefit.
22 CHAIRPERSON LASHOF: That's correct.
23 Others?
24 Art?
25 DR. CAPLAN: One of the things that has
61
1 come up a bit in our somewhat sparse comments -- but
2 it's probably the time to bring it up now -- is I
3 think it's not clear to me, although I know which way
4 I lean about this, that it's part of our mandate to
5 make suggestions about what Phil was talking about
6 earlier, the future deployments, repeating the same
7 problems in that we may want to say things about
8 either research or structure or infrastructure that
9 needs to be said.
10 And I lean toward thinking that that would
11 be important and should be part of what we are up to.
12 But it's not clear to me as I look at this that
13 anybody asked, so to speak.
14 CHAIRPERSON LASHOF: I think I can respond
15 to that in the positive. In my discussions with the
16 National Security Council and the representatives of
17 the Agency in assuming this role, that was one of the
18 things that was stressed, that they do look to us to
19 make recommendations as to how future issues of this
20 kind can be addressed so that we don't find ourselves
21 in this situation this long after a deployment of
22 troops.
23 Are there any other questions that come to
24 mind on the Committee on just reading the charter
25 itself and understanding what our responsibilities
62
1 are?
2 (No response.)
3 CHAIRPERSON LASHOF: I suspect there is
4 just one other thing that needs to be said to that.
5 And it's only fair to the veterans that they
6 understand that. We heard so much yesterday of their
7 need to have answers.
8 We are not in a position, probably, to
9 give a definitive answer for all people's individual
10 problems at the end of this time. What we hope we
11 will be able to do is to say whether or not the
12 studies that are ongoing will provide those definitive
13 answers.
14 If studies that are ongoing during the
15 course of our time give us answers, we certainly will
16 act on that and state that. But epidemiologic studies
17 take time. And what we must be sure of, I think, is
18 that everything that should be done is being done.
19 Everything that can be done is being done.
20 And if not, to identify those and
21 recommend that they be done. That is, I think, our
22 final goal. And we need to be clear to ourselves and
23 to the community at large that that's our goal.
24 Phil?
25 DR. LANDRIGAN: Yes. I think in that
63
1 vein, we heard testimony yesterday from many veterans,
2 their families, members of veterans' groups, laying
3 out a long series of diseases and syndromes and
4 symptoms that are bothering them.
5 And we saw a similar list up on the slide
6 a while ago during the IOM presentation. It behooves
7 us to look very carefully at that list and look at the
8 minutes that will be provided us to make sure that
9 we've got all the details of the testimony that was
10 presented.
11 And make sure, as you say, that each of
12 these points is being addressed, at least to the
13 extent it can be, by either the various committees
14 that are already going on, the various studies that
15 are underway.
16 And if they are not, it -- I think it's
17 our job to make suggestions as to how any gaps can be
18 filled so that, indeed, no stone is unturned.
19 CHAIRPERSON LASHOF: All right.
20 Art?
21 DR. CAPLAN: Just following up on the
22 issue of coming up with the answers.
23 I think you put it very well, Madam Chair,
24 about our inability to answer some of these questions,
25 that it's going to have to fall to those actually
64
1 doing the studies to answer some questions.
2 But we did hear yesterday as part of the
3 testimony claims about difficulties in getting
4 physicals, chilling effect if one reported complaints,
5 problems about fears of retribution, and what happened
6 in terms of loss of benefits or coverage for people
7 who are discharged and so forth.
8 And I think it might be appropriate for us
9 not again to try and solve every problem and
10 difficulty that has come up, but at least to look at,
11 again, structural means as part of the research to see
12 that those sorts of things -- what's going on and what
13 could be done to attend to some of that as well. Not
14 just, in other words, the biology, but some of these
15 administrative problems that we hear about.
16 CHAIRPERSON LASHOF: Andrea?
17 DR. TAYLOR: I guess I wanted to follow up
18 with that as far as active duty versus those who have
19 been discharged who are no longer in service --
20 whether they are receiving the help that they need.
21 And I guess that was we heard over and over again. We
22 definitely have to address that.
23 CHAIRPERSON LASHOF: I think the last
24 couple of remarks lead us right into the next things
25 I wanted to take up as we run through, which is a
65
1 discussion of our first day and what issues came out
2 that we feel are burning that we need to look at.
3 But before I move on to that, let me ask
4 whether there are any other questions or
5 interpretations of the charter that anyone wants to
6 make any further comments on before we move into --
7 what I planned to do was -- the structure of our
8 discussion this morning will be around, after the
9 charter, to discuss the first day and what things came
10 out and then to go systematically through what the
11 thrust of our report will eventually look like.
12 How we are going to go about -- staff,
13 what kind of staff we are going to need, and then how
14 the Committee and staff are going to function. What
15 will be staff functions, what kinds of things the
16 Committee is going to have to address as a Committee,
17 a whole, and some of the operational issues.
18 And we -- I think that will follow
19 naturally from this discussion.
20 Anybody have any other suggestions about
21 how we go about this task at this point?
22 (No response.)
23 CHAIRPERSON LASHOF: Okay. If not, then
24 let's launch into further discussion of issues that
25 people feel came up yesterday that they want to
66
1 explore further, either by getting staff to get
2 further information, or by further testimony at future
3 times. Whatever.
4 Andrea?
5 DR. TAYLOR: I wrote down a few things.
6 I've heard a lot of information regarding chemical
7 environmental exposure, or some. I am interested --
8 one of the persons who testified yesterday talked
9 about the kerosene exposure, kerosene use.
10 So I am really interested in following up
11 on that as far as the contents of kerosene, what was
12 being actually used at the point -- in the tents for
13 heating -- whether that had any effect, along with
14 some of the other issues around, the chemical warning
15 signals that constantly went off.
16 And although we've been told that there
17 was no chemical warfare, then why would the chemical
18 warning signals go off and react? And people would be
19 asked to don their equipment as well as take the
20 tablets, the nerve tablets?
21 And that's something that I think we have
22 to investigate further, to make sure that the correct
23 studies are being done.
24 The other thing that came up -- and I am
25 sure we've talked about it before -- is the mycoplasma
67
1 incognitas. I think that's the name that we heard.
2 I've never heard of that before.
3 And I think we need some more background
4 information on that illness or disease. Actually what
5 it is. Who is getting it. How many people are
6 affected. And I think that's what I have. And also
7 the inoculations, whether that had any impact. And we
8 have had a lot of researching done on that.
9 CHAIRPERSON LASHOF: Rolando?
10 DR. RIOS: That's one of the issues that
11 came up to me yesterday -- that loomed in my mind
12 yesterday -- is to try to establish the facts, what
13 actually happened, what kind of elements were the
14 troops actually exposed to.
15 And I think that a significant part of our
16 report should be where we address every claim and what
17 the government's response to it is. We have some
18 pretty important group made up of citizens that
19 believe that the Department is hiding something or --
20 there is this kind of suspicion that is -- I think
21 there is a broad perception that it's difficult to
22 imagine that all this happened over there and that
23 there was no exposure to chemical war agents.
24 And I think that's why people are worrying
25 that there must be something going on here, but the
68
1 government doesn't want to tell us.
2 I do think that an important part of our
3 report must address each claim and what the response
4 of the government is, and what we have been able to
5 determine -- whether or not we agree or whether or not
6 we disagree, or whether or not we, you know, we can't
7 conclude one way or the other.
8 So we've got to address the issue of what
9 are the facts, what were they exposed to. Were
10 chemical war agents there? The government has agreed
11 that they inoculated everybody. So we know that they
12 were exposed to that.
13 We all know that there was a lot of
14 kerosene, a lot of the fires from the wells. That's
15 there. Those are facts that they admit to. So I
16 think that we do need to focus on what we can conclude
17 insofar as what our troops were exposed to.
18 And I think that's going to be an
19 important part because it underlines a lot of the
20 suspicions that people have about what the government
21 is saying these days.
22 CHAIRPERSON LASHOF: Andrea?
23 DR. TAYLOR: I just thought of one other
24 thing regarding the chemical warning signals. We need
25 to know what kind of equipment was used, what was the
69
1 actual equipment, why it -- that was the one thing
2 that I wanted to ask.
3 CHAIRPERSON LASHOF: Elaine?
4 DR. LARSON: Well, first I have to make a
5 comment about the signals going off. That -- it
6 doesn't bother me as much as I think it does other
7 people.
8 And that's probably because in the past,
9 as a nurse I worked in critical care units where
10 monitors are always going off because you have them
11 set so that they go off for muscle movement and
12 everything else just so that you will check.
13 And it's very common in healthcare that
14 you have monitors for everything, EKG's and I.V.
15 lines. And they're buzzing and sort of burping all
16 the time. But anyway, it is something.
17 I think the main thing, again, is that
18 we've got to get the facts straight. Yesterday we
19 heard conflicting information. I don't know what's
20 true. There are some things that we can determine are
21 true, and not true.
22 And I think we may need some more hearings
23 specifically about the infectious diseases, the
24 microsporidium, the mycoplasma. And leishmaniasis,
25 and Q fever to a lesser extent because those are
70
1 expected. And those are endemic in the area. But
2 particularly the new things.
3 We may need some expert help in addition
4 to what's on the panel with the chemical exposures and
5 what the implications of that are. What people were
6 actually exposed to and what the implications are. I
7 think we need some expert help with the vaccine and
8 the potential for the kinds of side effects or that as
9 an exposure.
10 And then we need someone to give us more
11 information about teratogenicity and some of the
12 congenital issues that came up yesterday. That
13 factual information we need.
14 Lastly, I think we need to know what's
15 actually lost and what -- by virtue of whatever you
16 want to call it, inefficiency or whatever -- versus
17 what is available in terms of data on who got what.
18 And we may, again, want to make some
19 recommendations on what data need to be kept in the
20 future for long-term follow-up.
21 CHAIRPERSON LASHOF: Phil?
22 DR. LANDRIGAN: No.
23 CHAIRPERSON LASHOF: Any further comments
24 from yesterday?
25 Marguerite?
71
1 DR. KNOX: I just have a couple of things.
2 I think it's very important, again, that we look at
3 the predeployment physical that veterans have,
4 especially for the Reserve and Guard components.
5 Active duty army has a physical every
6 year. But that's not so. And I think some of the
7 that patients we saw with GI bleeds and myocardial
8 infarcts during the war were because people were not
9 screened well. They really were not physically fit.
10 The other thing is I want to comment on
11 the VA system. I think for the largest healthcare
12 system available, that it is a very good one. VA
13 employees do their very best to meet the needs of
14 veterans. But because of federal funding, it is
15 difficult.
16 I will admit that the VA has problems with
17 records because of the transfer from one facility to
18 the other. And that might be something that we could
19 address to the VA for an administrative purpose.
20 CHAIRPERSON LASHOF: Thank you.
21 David?
22 DR. HAMBURG: Well, our colleagues have
23 already raised a whole series of major questions that
24 came up yesterday that we should clarify. I certainly
25 agree that getting the facts straight is the most
72
1 important task we have.
2 I have to say, having been through many
3 similar exercises on other subjects, that it's easy to
4 say and very hard to do. It's very complex. We heard
5 yesterday vivid and poignant and moving accounts of
6 the suffering and the concerns and hope for our
7 veterans and their families.
8 And we have to take those very seriously
9 into account, do everything in our power to see to it
10 that those are matched up with the best available
11 scientific and professional resources of the country.
12 And that will be our ongoing and fundamental task.
13 But it is hard to do. I think we mustn't
14 be presumptuous. That is, the extent to which we can
15 mobilize the capacity throughout the country will be
16 very important. How much we an do ourselves, a
17 relatively small group -- and these issues are very
18 complicated.
19 We will need to think not only about our
20 own staff, about our own members, but I think -- how
21 do we get, for example, people who are doing the best
22 ongoing research on these thorny questions, either
23 directly vis ? vis the Persian Gulf War, or in other
24 contexts, chemical agents and so on.
25 There are a number of different sources of
73
1 information that we are going to have to try to tap
2 quite systematically in the relatively short time
3 available to us. So I am not going to make
4 suggestions about that at the moment.
5 But I think, in effect, the mobilization
6 of the relevant scientific and professional
7 communities and the relevant knowledge bases is a
8 really big job. It's got to go way beyond what we and
9 our staff will actually be able to do ourselves.
10 We'll have to stimulate a lot throughout the country.
11 CHAIRPERSON LASHOF: Thank you.
12 Don? Any comments at this point?
13 DR. CUSTIS: I know it's difficult to deal
14 with anecdotal information. But on the other hand, it
15 seems to me that we possibly could make some use of it
16 by taking some samples, some examples of individuals
17 who are suffering from certain illness and follow
18 through, find out exactly what had been done for them,
19 and perhaps what is left undone, on a sample basis.
20 I think to -- we can't afford to ignore some of this
21 anecdotal information.
22 CHAIRPERSON LASHOF: Okay.
23 Art?
24 DR. LARSON: Joyce, could I just comment
25 on that --
74
1 CHAIRPERSON LASHOF: Sure.
2 DR. LARSON: Because this is a technique
3 that the Institute of Medicine uses with some success
4 quite often. And that is the case study approach.
5 Now there's, you know, pros and cons and ups and
6 downs.
7 But it's not a bad idea to look at some
8 representative cases and follow through the system of,
9 you know, sort of a systems approach to what happened
10 to people. And I don't think that that's been done in
11 any way before.
12 CHAIRPERSON LASHOF: Okay. Let's save
13 that for when we get into the actual discussion of how
14 we are going to do the job. Right now we are
15 discussing what we need to cover, and then we will dig
16 into exactly how we are going to go about doing it.
17 Art?
18 DR. CAPLAN: One of the things that I
19 think we ought to try and cover is something about how
20 the response was mounted to this particular episode
21 and the attempt to muster information. I -- we have
22 the outcomes, if you will, the four committee reports
23 and so forth.
24 But I'm interested in knowing literally as
25 much as we can without turning it into a complete
75
1 history project. But who asked for what when, how
2 quickly, what sort of memos and requests went back and
3 forth. Because I think that would help us know what
4 are options and what's, to follow David's suggestion,
5 what's really practical.
6 I mean, it may take a year to roll
7 something forward or 18 months to get a study up and
8 put our for peer review and so forth. And that may
9 just be a reality.
10 But if you are looking at it from the
11 point of view of someone who is ill and waiting for an
12 answer, it looks like an obfuscation or a plot.
13 And I think it's our -- in some sense our
14 responsibility to get information so that we can
15 explain to people why sometimes these responses take
16 some time, and that's just going to be the way it is.
17 So I'd like to see us at least be able to
18 pull maybe some information about how we got to the
19 reports that we have with memos or documents or
20 whatever there is there.
21 The two other things that I'd like some
22 information on came up yesterday actually in the first
23 panel testimony. What are other countries doing? And
24 what were the illnesses there? And discussions to the
25 extent they've had them and so forth? I'd just like
76
1 to find out what we can about that.
2 And the third thing that occurred to me is
3 I'd like to get some information about actually -- I
4 guess what Marguerite is talking about -- what really
5 is done in terms of base line and standard information
6 collection.
7 I don't know that everybody's physical is
8 kept in a giant megacomputer somewhere. So what is it
9 that's -- what do we know, as we begin the process of
10 sending troops into war, about their health status?
11 What do we know about the indigenous risks
12 that are believed to be out in any area, from
13 intelligence reports or whatever it's going to be? So
14 what do we know when we start?
15 And then maybe we can say something
16 interesting about what we might want to try to learn
17 next time when we start.
18 CHAIRPERSON LASHOF: Fine.
19 John, do you have anything at this point?
20 DR. BALDESCHWIELER: On the basis of
21 yesterday's presentations, I would again recommend
22 that we consider carefully two specific things. One,
23 the mycoplasma incognitas, and the microsporidial
24 species that were mentioned. It seems to me that
25 those are specific things that we can follow up on.
77
1 And that would be a good use of our staff.
2 Also, one other specific issue. I must
3 say I found the descriptions of the environmental
4 exposures unconvincing, and particularly the exposure
5 to the plumes from the oil well fires. It seems to me
6 that there is an enormous amount of release of toxic
7 material in those plumes.
8 And what I thought I heard was that the
9 analysis of serum levels of specific hydrocarbons was
10 used as the measure. It seems to me this may miss an
11 important point. It meant, in particular, the -- it
12 seems to me the major risk is from particulates with
13 carcinogens that are potentially condensed on them.
14 And so it may be that the most important
15 effects of exposure are yet to come in the sense of
16 long-term, long-latency carcinogens. So it seems to
17 me that's an important one to follow up on.
18 Other observations from the presentations
19 -- it seems to me that the reports on the performance
20 of the VA system are very uneven. And long waits,
21 lost records, and so forth.
22 And here I think the case study approach
23 should be very useful, as I think tracking down, you
24 know, what happened in a few individual cases will be
25 very useful. We may find that some hospitals perform
78
1 very well, others do not. And all of that would be
2 useful input.
3 Finally, it seems to me that it's
4 essential to get some sort of credible background
5 measures of incidents of symptoms of the kinds that
6 we've -- that have been reported. Background measures
7 from control groups that are really as comparable as
8 they can be made.
9 CHAIRPERSON LASHOF: Thank you.
10 Okay. Well, I think all of those are good
11 points of things we need to follow up. If we look
12 specifically at the headings in the charter, it might
13 be one way to try to look at the broad areas of
14 inquiry and look at what kind of staffing and what
15 kind of efforts we want to carry out.
16 I mean, the first thing we were to look at
17 was the research. And it's clear that we are going --
18 I mean, we have in our binder the research plan of the
19 -- pulled together by the VA and DOD and HHS. At
20 least all signed off on it. It's a fairly extensive
21 research plan.
22 I think there's no question that we need
23 to do an in-depth -- we need staff to do an in-depth
24 review of that research plan, to understand its
25 status, to look at how comparable the various -- the
79
1 issues I raised about comparability of that area. I
2 think that's a lot of staff work that needs to go on.
3 I guess one of the questions for us is how
4 do we as a Committee address that versus what we have
5 staff try to do and what things you would like to have
6 further Committee meetings specifically address?
7 Phil?
8 DR. LANDRIGAN: Yes. I think there's a
9 basic principle here. And it was enunciated by the
10 folks from the IOM this morning. And I'd like to
11 underscore it. And that is that the results of the
12 various registries that were presented to us yesterday
13 by DOD and VA are nothing more than that. They are
14 registries.
15 In other words, these are tabulations of
16 symptoms in a lot of people, but a relatively small
17 and self-selected fraction of the total population
18 who, for whatever reason, have come forward. There is
19 no -- nobody concedes for a moment that these -- that
20 these registries constitute prospectively designed
21 hypothesis-driven epidemiologic studies.
22 So I think that we have to distinguish
23 carefully between the results of those registries
24 which throw up clues, but are really almost totally
25 unequipped to answer definitive questions.
80
1 We must distinguish those from true
2 epidemiologic studies such as the one we were told is
3 about to be undertaken in Iowa, where a serious effort
4 is going to be made to compare exposed and unexposed.
5 I don't know if that's a perfect study or
6 not. I simply haven't seen the protocols. I have
7 heard that some folks have concerns about it. I don't
8 know those concerns.
9 But I think those are issues that we need
10 to keep clear as we proceed, as we develop lists of
11 exposures that we think ought to be subjected to
12 epidemiologic study.
13 We have to do the testing of those
14 exposures in properly designed epidemiologic
15 protocols, and not merely rely upon the registries to
16 throw out the answers.
17 CHAIRPERSON LASHOF: Any further -- I
18 agree. And I want to caution us -- further thoughts
19 about how we go about evaluating the ongoing research
20 projects and whether, since the key question we'll
21 have to address is: Are these research projects ones
22 that will give the answers? Are there new research
23 projects that need to be done?
24 Certainly we need a lot more briefing from
25 staff. This book is pretty extensive. And I don't
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1 know how many of you were able to go through the
2 reports in it. But we need to do that. But there are
3 lots more reports that we didn't put in the book that
4 we need yet to digest.
5 Marguerite?
6 DR. KNOX: Apparently Dr. Brix was under
7 the impression that the information already existed
8 about the patterning and aggregating of certain
9 diagnosed diseases and the undiagnosed illnesses in
10 the Gulf War Veterans that were not mentioned in the
11 DOD report. And so maybe that would be easily
12 obtainable as well.
13 CHAIRPERSON LASHOF: David, you raised a
14 lot of questions about the psychological stressors.
15 Do you have recommendations about -- in this -- under
16 the heading of research, if you will, how we might
17 address learning more about what we need to know on
18 this score.
19 DR. HAMBURG: Well, operationally we
20 probably need someone on staff who is a specialist in
21 that area. I understand that there are bound to be
22 concerns that stress will not be treated in a proper
23 scientific and rigorously medical public health way,
24 but rather as a way of dismissing the difficulties
25 that veterans and their families have.
82
1 At the extreme, and some times past, there
2 has been -- had the implication that well, there is
3 just a kind of malingering. You know, it's kind of
4 made up. It's invented. It's not real, etc.
5 And that of course is a depreciatory
6 stance which evades responsibility on the part of the
7 officials or institutions who are coping with the
8 problem. That is not what I am talking about.
9 There is a very serious question of how
10 severe stress affects the endocrine system, for
11 example, the cardiovascular system, possibly the
12 immune system, and so on. It's a very extensive body
13 of research over about half a century which has been
14 coming to fruition in the past decade.
15 And I think it just simply has to be taken
16 into account. And it's one of the technical areas we
17 need to cover, being mindful of the distortion to
18 which that area is always susceptible as a kind of a
19 cavalier dismissal of serious problems, which is
20 obviously not the way in which we would treat it.
21 CHAIRPERSON LASHOF: In that regard
22 certainly we would want to add someone on staff.
23 Would you see that as an issue that we ought to have
24 some further panel and hearing about? Bringing in
25 some experts in that field?
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1 DR. HAMBURG: Well --
2 CHAIRPERSON LASHOF: We can wait on
3 deciding that. But --
4 DR. HAMBURG: To the extent we -- it's
5 part of a part of a kind of systematic even coverage
6 of major problem areas. I wouldn't give it a higher
7 standing with let's say the sorting out of possible
8 chemical agents. But it's in that same ballpark.
9 CHAIRPERSON LASHOF: In the same category?
10 DR. HAMBURG: Yes.
11 CHAIRPERSON LASHOF: Fine.
12 Don? Any further thoughts on this aspect?
13 DR. CUSTIS: I think you've pretty well
14 covered it.
15 CHAIRPERSON LASHOF: Art?
16 DR. CAPLAN: One set of information that
17 I think it might be useful to have -- I don't know
18 that everybody has to get it -- but clearly for many
19 of these protocols, when we heard testimony yesterday
20 there were claims made about nonstandardization or
21 incomplete interview things.
22 We have been asking about standardization
23 for information. I would just like to see us
24 archivally get some staff person who could read,
25 store, collate, tell us what's in the basic protocol
84
1 documents. We need somebody who is savvy to be able
2 to read them and call them up and just tell us whether
3 they look comparable or not, or incomplete or even
4 incomprehensible, Lord only knows.
5 CHAIRPERSON LASHOF: Fair enough.
6 John?
7 DR. BALDESCHWIELER: One additional
8 thought. There has been so much previous work and
9 layers of study and analysis upon study and analysis.
10 And I think we saw some of the problem this morning.
11 That is the distinctions between what was
12 literally in the IOM and DOD reports and what was said
13 about what was in the DOD and IOM reports and those
14 seem to be completely orthogonal sets of statements.
15 And so, you know, I think we will have to play some
16 role in sorting all of this out.
17 CHAIRPERSON LASHOF: I think that's a very
18 important point. It was an issue that was raised with
19 me early by the White House group -- is the importance
20 of our thinking through how we communicate with the
21 public about the issues as we do our work, not just at
22 the end when we have a report, but as we go along to
23 be sure that we think through what's the best means of
24 communication beside being on C-SPAN or the newspaper
25 articles, what we want to do in a more proactive way
85
1 ourselves. And that's an issue we'll take up.
2 All right. Well, from that I would say
3 that, you know, in the research area we would
4 certainly want on staff epidemiologic expertise and
5 environmental risk assessment expertise.
6 I think, John, you've raised a lot of
7 questions about the environmental risk. There has
8 been at least one fairly scientific or technical study
9 on risk assessment that I don't pretend that I have
10 completely digested, or frankly, completely
11 understood.
12 But I think we do need some people to do
13 that and obviously I would look to -- the members of
14 the committee have different expertise. I would hope
15 they would concentrate their efforts in that area and
16 take a look at that and make specific recommendations
17 to staff.
18 And if they can help us identify not only
19 people to put on staff, but consultants that we could
20 call in, people that -- the contracts that we might be
21 able to give for consulting efforts. We can go both
22 ways. We have funding for staff as well as for
23 consultants. And we can commission reports to us
24 analyzing reports, if you will.
25 Don?
86
1 DR. CUSTIS: You know, it occurs to me
2 that the statements that were made that the people who
3 put out the fires that were complaining of no illness
4 -- in what depths that has been pursued.
5 That category of people remind me of the
6 ranch handers in the Agent Orange group who were in,
7 you know, were studied with some intensity. I would
8 think that the people who put out the fires would be
9 a very important source of information.
10 CHAIRPERSON LASHOF: Okay.
11 DR. LANDRIGAN: May I --
12 CHAIRPERSON LASHOF: Yes. Sure.
13 DR. LANDRIGAN: I think that's an
14 excellent suggestion. And it sort of goes back to
15 what I was talking about yesterday, with the need to
16 use our common sense, our instinct, and our ears to
17 find subgroups within this enormous population of
18 700,000 people who might have had particularly intense
19 exposures.
20 And sometimes it's much more fruitful to
21 look at a few hundred people who are heavily exposed
22 than many thousands who were minimally exposed. And
23 I wonder if there is some systematic way that we can
24 seek to learn about such groups.
25 There is usually somebody who knows about
87
1 those groups, but you have to find that somebody. And
2 that might be worth some thought. It's a detective
3 process.
4 CHAIRPERSON LASHOF: Okay. I think that
5 would be a good detective process for one of the staff
6 people. It's also one of the reasons that I raised
7 the question of how much longer it's going to take
8 them to do that geographic identification. I really
9 don't understand why this long after, we don't know
10 who was where, and when.
11 All right. Let's move into the clinical
12 care area. It's obviously a major issue that came up
13 from yesterday and how we might tackle looking at the
14 clinical care.
15 One is to consider one of our panel future
16 meetings -- be a panel of physicians who have been
17 caring for veterans, both at the VA and some of the
18 other sources of care that veterans have sought out.
19 But I am open to any idea and suggestions along that
20 line.
21 Elaine?
22 DR. LARSON: Here I think Don's suggestion
23 about case studies is relevant. And if we are going
24 to do panels, I'd like to see not just physicians
25 there, but also -- there's no such thing as a typical
88
1 patient, but somebody who's been a client in the
2 system and perhaps some of the nurses as well because
3 there's a different perspective from those delivering
4 care, outpatient care in the system.
5 CHAIRPERSON LASHOF: Marguerite?
6 DR. KNOX: I think it might be beneficial
7 for the panel as well to get some kind of
8 understanding about how the VA works.
9 CHAIRPERSON LASHOF: Yes.
10 DR. KNOX: Any Gulf War Veteran or any
11 veteran of any kind can go into the VA system for an
12 emergency. If you are not a service-connected
13 veteran, not just coming for a physical, the rules and
14 regulations are very different.
15 So I think it would behoove us to educate
16 ourselves, those of us that are not as familiar to
17 know what the differences in that care is.
18 CHAIRPERSON LASHOF: Okay. Fine.
19 DR. RIOS: I know that I have been
20 contacted by a couple of doctors in Texas who have
21 some Gulf War Veterans who are their patients and have
22 indicated that they would like to present information
23 to this Committee by way of a panel --
24 CHAIRPERSON LASHOF: Yes.
25 DR. RIOS: With their patients and give
89
1 you their perspectives. And I think that would be
2 worthwhile.
3 CHAIRPERSON LASHOF: Okay. You give that
4 kind of detailed information to staff.
5 Art?
6 DR. CAPLAN: That might be a good
7 opportunity for the Committee to maybe think about
8 going to the VA and doing it there.
9 CHAIRPERSON LASHOF: Yes.
10 DR. CAPLAN: My school has a -- at Penn.
11 there is a pretty extensive program now on
12 rehabilitation. And they are interested -- made an
13 offer that maybe we might want to come and both listen
14 and look.
15 CHAIRPERSON LASHOF: Okay.
16 David?
17 DR. HAMBURG: The VA system is not the
18 whole story by any means. But it is an important part
19 of this. And so there are at least two things that
20 occur to me that might be a useful way for us to get
21 an overview.
22 One is that there have been periodic
23 really major reviews of the VA care system by one or
24 another part of the National Academy of Sciences. I
25 don't know if there has been a recent one in the past
90
1 few years. Some of them in the period of 15 or so
2 years ago were really well done, very thoroughly done,
3 enough that they created some flurry of resistance in
4 various circles. But if there is a recent one, we
5 ought to find that out.
6 Secondly, Dr. Kizer, who appeared here
7 yesterday, has been given, I think, the lead role in
8 pushing a major extensive reform. And we probably
9 should find out about that insofar as it's likely to
10 affect Gulf War Veterans and their families and maybe
11 many aspects that go far beyond that.
12 Obviously there will be. But at least
13 that -- how it would impinge would -- for example,
14 it's conceivable that a reform which in general would
15 be very invigorating for the VA might have some
16 adverse side-effects for Gulf War Veterans. I haven't
17 the foggiest idea. But I think since that is
18 perceived at the moment as a major undertaking, we
19 ought to learn what is the nature of that reform.
20 CHAIRPERSON LASHOF: Okay.
21 DR. LARSON: Joyce, obviously --
22 CHAIRPERSON LASHOF: Yes, Elaine?
23 DR. LARSON: It goes without saying that
24 we want to do an analogous thing on the active duty
25 side.
91
1 CHAIRPERSON LASHOF: Pardon?
2 DR. LARSON: I think we want to do an
3 analogous effort on the active duty side as well.
4 CHAIRPERSON LASHOF: Yes.
5 DR. LARSON: In terms of medical care.
6 CHAIRPERSON LASHOF: The DOD is also -- I
7 think Steve Joseph has been ordered to do -- or,
8 ordered is probably the incorrect term, but is
9 undertaking a review of the total medical service at
10 DOD and looking at whether that needs to be
11 reorganized or not. And so I think we can get an
12 update.
13 I think we have to be careful we don't get
14 into too broad in those areas and confine it to the
15 issue, as you point out, that what will be the impact
16 of how they are looking at on the Gulf War Veteran and
17 not try to put ourselves as another panel to critique
18 the reevaluation in the VA and the DOD, but focus on
19 that in relation to the Gulf War Veterans.
20 Any other thoughts about the clinical
21 care, diagnostic treatment? I think we need to know
22 more about the VA registry. I mean, we've gotten this
23 detailed report on the DOD registry.
24 But we don't know whether the data are
25 similar for the VA registry yet and how soon that data
92
1 will be available. And to understand how those
2 examinations are being done, I think we need more on
3 that.
4 DR. BALDESCHWIELER: In the spirit of the
5 case study, it might be interesting to try phoning
6 some of the 800 numbers and see --
7 (Laughter.)
8 CHAIRPERSON LASHOF: To see what happens
9 when you call.
10 DR. BALDESCHWIELER: To se what really
11 happens.
12 CHAIRPERSON LASHOF: All right. Well, one
13 thing we could certainly do is have staff supply all
14 the Committee members with 800 numbers and ask every
15 one of us to make a few calls and find out what
16 happens.
17 DR. BALDESCHWIELER: As an
18 experimentalist, I think this is often very
19 illuminating.
20 CHAIRPERSON LASHOF: That'll be our own
21 original research.
22 DR. LARSON: Actually I was going to do
23 that last night. But I ran out of time. Seriously.
24 CHAIRPERSON LASHOF: Okay. Outreach is
25 another area. I mean, I'm sort of running down our
93
1 charter area as you can see. Outreach was the next --
2 certainly the panel we heard yesterday was our first
3 effort at outreach.
4 And Tom McDaniels, who was at my side
5 during that, is the staff person -- we've brought
6 aboard staff to work on the outreach -- and was
7 instrumental in contacting and getting that group up.
8 We have to admit that, you know, he has not been on
9 board very long.
10 And we weren't able to do the kind of
11 outreach we ought to be able to do in the future. For
12 our very first meeting, we had to pull this one
13 together very quickly.
14 DR. RIOS: Along those lines, are we
15 planning to have hearings out in the field?
16 CHAIRPERSON LASHOF: That's open for
17 discussion. I would like to hear how people feel
18 about hearings in the field, whether those ought to be
19 numerous, limited, whole committees, subcommittees,
20 specific areas, how we decide where --
21 DR. RIOS: I don't know what's out there,
22 but I think the idea of getting away from Washington
23 and hearing from people out in the field might be of
24 some benefit because out there that have something to
25 say about this.
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1 CHAIRPERSON LASHOF: I agree.
2 Don?
3 DR. CUSTIS: One option we might consider
4 would be to contract for some focus group sessions on
5 the part of -- contract with people who know how to
6 handle a focus group, you know, organize focus groups.
7 CHAIRPERSON LASHOF: Yes.
8 DR. CUSTIS: And get a sampling of
9 patients who have been treated.
10 CHAIRPERSON LASHOF: I think that's --
11 DR. TAYLOR: I missed something Donald
12 said. He was saying contract with --
13 DR. CUSTIS: There are commercial outfits,
14 you know, that do nothing but handle focus groups.
15 CHAIRPERSON LASHOF: Don?
16 Phil? Sorry.
17 DR. LANDRIGAN: Yes. I think -- I think
18 field hearings might be useful. I think that maybe
19 two topics where they could most fruitfully
20 concentrate would be on medical care and outreach. I
21 think research is probably less likely to be
22 illuminated by those.
23 CHAIRPERSON LASHOF: Elaine? Did --
24 DR. LARSON: Well, just a point of
25 clarification. My understanding of outreach here is
95
1 not to discuss how we are going to communicate or go
2 out, but it's to evaluate government-sponsored
3 outreach efforts.
4 CHAIRPERSON LASHOF: That's true.
5 DR. LARSON: So we're --
6 CHAIRPERSON LASHOF: That's right. Yes.
7 DR. LARSON: To do that two times a year.
8 CHAIRPERSON LASHOF: That's right. You
9 are right.
10 DR. LARSON: But related to the -- related
11 to the topic or our assignment --
12 CHAIRPERSON LASHOF: Assignment.
13 DR. LARSON: In addition to checking out
14 the 800 numbers I think it would be very useful if
15 anybody has any information about when they started
16 and the extent to which they have been used. It
17 probably isn't possible to get a good sense.
18 But you asked a question yesterday about,
19 okay, we've got these numbers. Do people know about
20 them? How many veterans use the Internet? How many
21 people use a computer? And we need to kind of -- my
22 sense is our mandate is to look at that. Are the
23 appropriate mechanisms being used?
24 I thought the panels yesterday were very
25 responsive. They said, "we are using multiple
96
1 methods" etc., etc., which is what you would want to
2 hear. But we need to get some sense of what media
3 campaigns there have been.
4 Has there been anything on the -- on
5 television? On radio there has. But the question is:
6 Is it appropriate? And is it occurring only at 2:00
7 a.m.? Or, what's going on?
8 CHAIRPERSON LASHOF: Yes. And also
9 newsletters. You know, what newsletters are going
10 out? What kind of mailings? We ought to archive all
11 of those and analyze them.
12 Art?
13 DR. CAPLAN: That's a great area for a
14 contract. One of the things I have been interested
15 over the years is working on tissue donation. And
16 there are, again, firms that just do a nice job in
17 tracking.
18 They can answer the question for you about
19 who knows about the 800 numbers. And does anybody
20 ever read newsletters that go out. And that sort of
21 thing.
22 That's a great place to get somebody with
23 good expertise on media outreach and let them look at
24 this. And they'll call other veterans' samples and
25 find out who has been looking at what and do they know
97
1 about the numbers and that sort of stuff.
2 CHAIRPERSON LASHOF: Yes. That's a very
3 good point. We can look into that.
4 DR. TAYLOR: Are there government support
5 groups at all in relation to Gulf War Veterans
6 illnesses? Is there any kind of support group
7 network? Does anyone --
8 CHAIRPERSON LASHOF: That's a good
9 question.
10 Yes?
11 DR. RIOS: Down in San Antonio there's a
12 group called the Gulf War Veterans Support Group
13 Network.
14 CHAIRPERSON LASHOF: There is a national
15 organization of --
16 DR. TAYLOR: But are they government-
17 sponsored? Or are they on their own with funding from
18 the outside?
19 DR. RIOS: The one in Texas is on its own.
20 DR. TAYLOR: Okay.
21 CHAIRPERSON LASHOF: The one I was
22 contacted by is on its own.
23 DR. TAYLOR: Okay.
24 CHAIRPERSON LASHOF: Do you know one,
25 Marguerite?
98
1 DR. KNOX: My experience has been most of
2 them are on their own. However, I would commend them.
3 They have a great network. They got the information
4 to everybody about this meeting.
5 CHAIRPERSON LASHOF: With the Internet
6 coming up on line I think we ought to look at, in more
7 detail, where those computers are going to be, how
8 useful they are to the vets, how many of them know
9 about it, how user friendly they are, whether they are
10 the difficult ones or the easy ones to get into and so
11 on.
12 DR. CAPLAN: One other thing I was going
13 to comment on about outreach -- if you talk to some of
14 the schools of communication in addition to Internet
15 things, it's possible to put on location things like
16 video disks and other technologies which some people
17 hope are going to start showing up in the library
18 system and in other places where people could find
19 them and know that there's some hope.
20 That maybe -- in Pennsylvania that there
21 is going to be this commitment to put a computer
22 terminal and a CD ROM type player in every library.
23 And that's the sort of place where people could go and
24 get a CD ROM disk that has information about this and
25 who to report to and that sort of stuff.
99
1 So I think we should think very broadly
2 both about what's out there now and what might
3 reasonably be out there that people could really use
4 that may not own a computer or know anything about
5 them or some of these other information technologies.
6 But a lot of cable stations, a lot of
7 technology coming out there -- it may be that in five
8 or ten years if we recommend it there could be some
9 effort to put that into play. So it's not just the
10 Internet, there's a lot of other tactics out there to
11 get information out.
12 CHAIRPERSON LASHOF: So our charge in
13 outreach really is one to look at what is going on in
14 outreach now, what we would recommend ought to be in
15 the outreach, as well as the other aspect that I had
16 started off on and -- how we outreach. So we've got
17 three aspects of outreach there that we'll need to
18 address.
19 DR. CAPLAN: We'll have to get an 800
20 number.
21 (Laughter.)
22 CHAIRPERSON LASHOF: Do we have an 800
23 number?
24 DR. CAPLAN: No.
25 CHAIRPERSON LASHOF: Okay. We'll talk
100
1 about that.
2 The next thing I had listed down to take
3 a look at was the question of the implementation of
4 past recommendations. As we know, there have been
5 others' reports and there have been recommendations.
6 I don't know that there's been any
7 systematic review of all the recommendations that have
8 been made and what's happened to those recommendations
9 and what is the status of the implementation of those
10 recommendations.
11 And Robyn Nishimi and I have been
12 discussing, you know, what maybe our first focus might
13 well be. And it seems to me that that's a logical way
14 to get at this to start.
15 Any thoughts about that?
16 Andrea?
17 DR. TAYLOR: I guess all of the
18 recommendations -- there are so many that have been
19 listed. And I guess it goes back to the agencies --
20 the DOD versus the VA system.
21 I guess -- is it our responsibility to
22 accomplish where these recommendations are and try to
23 investigate the implementations from that end? And
24 how will that be accomplished? I mean, I have a hard
25 time with OSHA doing follow up on inspections. So I
101
1 am just --
2 CHAIRPERSON LASHOF: I think to the extent
3 that it is possible -- and, you know -- for some
4 recommendations it's going to be easy to find out
5 whether they are being followed.
6 Specific recommendations on clinical care
7 and every physical exam will be very difficult for us
8 to know whether they are being implemented in the
9 field. All we can do is look at whether the
10 information got out to the field and so on.
11 Others in terms of the epidemiologic
12 studies that have been recommended by IOM -- whether
13 they have been started and where they stand should be
14 easy for us to find now.
15 And I do think the President and the White
16 House are looking for us to take a look at the
17 recommendations that have been made and let him know
18 whether they are being implemented or not being
19 implemented.
20 DR. TAYLOR: And make suggestions --
21 CHAIRPERSON LASHOF: And make suggestions.
22 DR. TAYLOR: And make suggestions on how
23 to get them implemented.
24 CHAIRPERSON LASHOF: Yes. That's within
25 our charge.
102
1 David?
2 DR. HAMBURG: Yes. I think that's very
3 important to do. That's why I raised with some of the
4 government people about what mechanisms of
5 implementation they had or could construct to pursue
6 the thought for recommendations it could put out
7 there.
8 I think we could ask every relevant agency
9 their response to perhaps a defined set of
10 recommendations that have made by serious bodies that
11 have looked into this up to now.
12 And their reaction, their commentary --
13 probably to a considerable extent they have already
14 reacted. They may have reason, basis, for rejecting
15 some of the recommendations. But the most treacherous
16 territory is where the response is essentially, "Yes.
17 We agree some day, some how we are going to do this."
18 And I think we need, therefore, to press
19 them for rather specific steps being taken and -- and
20 questions about mechanisms of implementation. I asked
21 twice about this coordinating board yesterday. And I
22 have to say the responses, though earnest and in good
23 faith and pleasant, were not very informative.
24 I -- it may be that this coordinating
25 board has real potential to move the agenda of serious
103
1 recommendations toward implementation. But that isn't
2 obvious to me from what we heard yesterday.
3 So I would want to know not only about
4 their response to major recommendations, especially
5 converging recommendations, but also about the
6 mechanisms they have in place or they are thinking of
7 constructing through which they would be likely to
8 respond effectively one way or another.
9 Not assuming that they accept all. But
10 yes or no. But if no, why. And if yes, what concrete
11 steps are being taken.
12 CHAIRPERSON LASHOF: John?
13 DR. BALDESCHWIELER: There's a significant
14 danger in asking a large agency such as DOD for their
15 response to a set of recommendations because they will
16 assign a staff officer to write you something, which,
17 you know, typically is not going to be very helpful.
18 A much more powerful approach, I think, is
19 to look at the end point. And to literally once again
20 look at some cases and see what is happening. I mean,
21 see what's really happening at the -- at the point of
22 care, for example.
23 And if you find some, you know, outrageous
24 inconsistency there, that will certainly elicit a
25 response through the system, I think, much more
104
1 effectively than asking for a bureaucratic response to
2 a set of recommendations.
3 CHAIRPERSON LASHOF: I -- pardon?
4 DR. CUSTIS: So little faith.
5 (Laughter.)
6 CHAIRPERSON LASHOF: I think that does
7 vary with the kind of recommendation. I think the
8 point is very well taken. There are some
9 recommendations that they will tell you, "Oh, yes. We
10 are doing this." But you have to go out in the field
11 and find out whether they are.
12 There are other recommendations like we
13 are going to do this study, and here's where we are in
14 the study and so on. And we'll work with the protocol
15 and so on. So, yes. I think both those points are
16 well taken.
17 Anything else on the implementation of
18 past recommendations?
19 (No response.)
20 CHAIRPERSON LASHOF: Okay. Moving ahead
21 to the hazard exposure assessment, including the
22 chemical and biological weapons. Well, we have talked
23 about that as an important issue that came up
24 yesterday. And clearly, it's one that we are going to
25 have to look into.
105
1 We have on staff, or pending to be on
2 staff very shortly, someone who has military
3 background in the area of chemical and biological
4 weapons who will have the clearance necessary to dig
5 into the records and review all of that.
6 There have been previous studies. Our
7 first thing is to review those, find out the validity
8 of those, see if there are areas that we feel that
9 haven't been looked into that need to be looked into
10 further.
11 And we have to be careful that we don't
12 start from scratch on all of these, and that we look
13 first at what's been done, and then try to analyze
14 those and see whether more needs to be done.
15 Yes?
16 DR. RIOS: On that, I noticed yesterday
17 when we asked them about bombing patterns and what
18 approach the military used on how to decide where to
19 drop their bombs and where not to drop them,
20 apparently a lot of that information is still
21 classified.
22 Whoever we bring in would have to be
23 somebody that knows everything about military planning
24 and what the ramifications are -- dropping bombs in
25 certain areas. I would assume that -- is that -- do
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1 you have somebody in mind already?
2 CHAIRPERSON LASHOF: Yes.
3 DR. RIOS: In mind already?
4 CHAIRPERSON LASHOF: Yes. And he does
5 have that kind of background. We'll get the CV's for
6 all these people. I haven't wanted to put out the
7 CV's until they were processed and aboard. But we'll
8 get them as soon as they have been cleared and we'll
9 be on to all of you.
10 And keep in mind that what we aren't able
11 to -- the expertise that we are not able to obtain as
12 full-time staff here we can bring on as consultants on
13 a part-time basis.
14 So as we proceed through our process and
15 we put staff on -- and you'll get the detailed CV's --
16 and then if you feel that there are areas that there
17 are gaps -- and we can identify consultants to bring
18 in to do those. But we have looked at someone that we
19 think will fit the bill for -- in that area.
20 DR. KNOX: Do you mind if I --
21 CHAIRPERSON LASHOF: Certainly. By all
22 means.
23 DR. KNOX: I think we need to look at a
24 point that someone made yesterday. And that is about
25 the chemical and biological warfare that cannot be
107
1 accounted for, that Saddam had. So I think that's
2 something that we need to look at.
3 CHAIRPERSON LASHOF: John?
4 DR. BALDESCHWIELER: A useful field trip
5 might be to Aberdeen, Edgewood, to have a look at the
6 various sensors and detection systems. I think that
7 would -- for those who haven't seen that, that would
8 be a potentially useful trip for the Committee.
9 And one other aspect in this category.
10 There have been, I think, so many concerns raised
11 about the prophylactic drugs, about the pyridostigmine
12 bromide and the vaccines that it would be useful to
13 have a thorough review of what's known from the
14 standpoint of the original FDA files on these
15 documents.
16 And also from the standpoint of the
17 anthrax vaccine, the British troops of course I think
18 were all vaccinated. And I don't know if the source
19 of the vaccine was the same. I suspect it was not.
20 But -- that is that the U.S. troops
21 received vaccine from the Michigan state origin. And
22 some from the British origin as well. But I think a
23 comparison in that regard would be extremely
24 illuminating.
25 CHAIRPERSON LASHOF: I think that maybe
108
1 another area where we would have a panel present to
2 the full Committee -- I mean, we would get staff to
3 get background information, but this is something that
4 deserves a panel presentation.
5 And a little further down the line after
6 we get all this on the table, we will sort of go back
7 and try to figure out what panels we want at the next
8 meeting and the following meeting, and some kind of
9 time line on that.
10 DR. BALDESCHWIELER: Are the -- the
11 botulinum toxin has not been mentioned.
12 CHAIRPERSON LASHOF: Yes.
13 DR. BALDESCHWIELER: But that one was also
14 distributed to a limited number. I think -- of the
15 order of 8,000 U.S. troops received that. And it
16 seems to me that that would be an important part of
17 that review as well.
18 CHAIRPERSON LASHOF: Yes. Okay. Fine.
19 Other thoughts on this one?
20 Elaine?
21 DR. LARSON: Yes. I was going to concur
22 that the most efficient way for us to deal with this
23 factual information about vaccines and these chemicals
24 is with expert panels.
25 But when I am looking at charge number 7,
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1 I guess I do need a little clarification on what we
2 are supposed to be doing. It just says regarding
3 chemical and biological weapons, we are to:
4 "review information related to
5 reports of possible detection of chemical
6 or biological weapons during the Persian
7 Gulf Conflict."
8 Well, what are we supposed to do with it?
9 And hasn't that been done? I am not exactly clear
10 what we are supposed to do with that information.
11 CHAIRPERSON LASHOF: I think what we are
12 supposed to do is look at the previous studies about
13 that and the response and why they've been passed off,
14 and see whether we think there is any stone unturned
15 or whether we are satisfied that it has been
16 adequately addressed.
17 DR. TAYLOR: Because we did hear yesterday
18 that there was no chemical warfare used. Right?
19 CHAIRPERSON LASHOF: Right.
20 DR. TAYLOR: So --
21 CHAIRPERSON LASHOF: I guess we can read
22 the newspapers and see when the defector from Iraq is
23 going to testify before the U.N. on their chemical and
24 biological warfare. We may get some information.
25 He's going to testify soon. So stay tuned.
110
1 David?
2 DR. HAMBURG: I think there is a general
3 principle there. I think you are absolutely right,
4 Joyce, that we need to start with the existing
5 reports, the serious ones that are science based to
6 the extent possible.
7 But then we also need to look for updates.
8 In the case we were just talking about now, there are
9 some conceivable updated. One was raised yesterday
10 about this U.N. technical group, I guess the group
11 that's headed by Rolf Ichaeus. They've been in and
12 out of Iraq quite a bit since the prior reports were
13 published.
14 And it may be that there is something of
15 importance there. I think you are absolutely right
16 about these recent defectors -- may well be a source
17 of information.
18 In any case, the principle is in each --
19 in each case, we build on what's there, but we ask
20 about updates. Is there new information? Or are
21 there approaches that have never been taken that are
22 feasible to take? It should be built upon the
23 previous reports.
24 CHAIRPERSON LASHOF: Okay.
25 Don?
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1 DR. CUSTIS: I think we ought to find out
2 if the American Legion has a source of information
3 that is not generally known.
4 CHAIRPERSON LASHOF: Pardon? Could you --
5 DR. CUSTIS: I think we ought to find out
6 whether the American Legion has a source of
7 information that is not generally known. They make
8 some pretty categorical statements.
9 CHAIRPERSON LASHOF: Well, all the
10 testimony we heard yesterday, you know, much of it was
11 abbreviated. We will have full records from all the
12 people who testified, and we can have staff follow up
13 and get additional information on any points that were
14 raised that we feel are not adequately covered.
15 And it will be quite a research task. All
16 right. Moving on then to the bioethics and humans and
17 subjects protection area.
18 Why don't we let you, Art, kick that one
19 off for us -- and what you think we need to do and
20 look at in that area.
21 DR. CAPLAN: I think there's really two
22 divisions there to look at that occurred to me as I
23 was listening to the testimony. One is sort of the
24 research ethics question: What can we do to protect
25 those who are asked to take experimental or innovative
112
1 things?
2 The drugs, the vaccines, that whole issue
3 should be looked at in terms of what they were told,
4 risks that they were going to face, what's practical,
5 what's silly in the context of active or imminent
6 conflict.
7 I think there's some questions about how
8 we are doing now in terms of protecting subjects as we
9 try to understand what happened.
10 And that's what I was asking of the last
11 panel in terms of identified information, loss of
12 insurance, the information going back to employers,
13 other third parties, that sort of thing.
14 So there are a set of issues about the, if
15 you will, research or innovative things that might
16 have been done to troops -- or during or just before
17 the conflict.
18 And then as we try to assess what they are
19 exposed to and what the ability is of these studies to
20 figure out what happened, how well do we do in making
21 sure that their welfare is protected?
22 And then there's the ethical issues on the
23 clinical side. How well does the system deal with
24 them? Are they informed? Do they get humane and
25 respectful treatment when they go into the VA or not?
113
1 Do they get dealt with well within the context of the
2 military health system with their complaints? Are
3 they basically getting the kind of care that we think
4 is ethically acceptable?
5 So that's roughly the visions I would be
6 looking at there. I think there's a bigger issue that
7 I flagged before that I just want to come back to
8 again. It seems to me the best ethics is still
9 prophylactic.
10 So anything we can say about how not to
11 get these problems, again, is going to be very useful
12 in terms of what I think would be constructive for
13 Americans to hear about. How to minimize these
14 problems from coming up again.
15 And I'll tell you what I mean by that.
16 I did go -- and I remember being at a hearing on the
17 vaccines. There's a lot of claims that we didn't have
18 basic science and didn't know about animal safety with
19 these things and that you did the best you could.
20 You tried to use these antibiological
21 warfare weapons, antichemical warfare interventions,
22 just assuming that it would be better to be protected
23 than not.
24 I'm not sure today that we are any better
25 off in answering the question: Would we use them next
114
1 week? And that's not a situation we should be in. We
2 just had a big experiment in the field.
3 And I don't know whether we could answer
4 any more -- that if next week we had to go and deploy
5 in a desert situation and somebody said, "I think
6 there might biological or chemical weapons put into
7 place. So should I take this vaccine or do I take
8 this pill?" -- something is not good about that.
9 That seems to me to be an ethical problem.
10 If we sort of miss the opportunity to figure out the
11 answer to the question, we are going to be back at it
12 again a month or a year or ten years from now. So --
13 CHAIRPERSON LASHOF: Any thoughts about
14 how we would go about both aspects of that? First,
15 what they were told, the initial ones. And then the
16 more difficult one, I think --
17 DR. CAPLAN: Some of it's panels again.
18 I think there's some opportunity there for information
19 to be presented to us about what the actual context is
20 of doing -- in wartime situations or in conflict,
21 trying out new medicines, new vaccines, what's policy,
22 getting the documents and then finding out literally
23 from a few people what they think the -- what's
24 reasonable to try and do and what's not reasonable to
25 try and do.
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1 Postwise, I think some of the testimony
2 we'll collect in terms of care, clinical care and
3 outreach, will cover what we need. I don't think
4 we'll need anything special. We'll just have to ask
5 the right questions in there.
6 CHAIRPERSON LASHOF: Well, again, in terms
7 -- in following up with Don's idea that maybe the idea
8 of some focus groups that could --
9 DR. CAPLAN: Yes. It would help.
10 CHAIRPERSON LASHOF: Work on all these.
11 DR. CAPLAN: Yes.
12 CHAIRPERSON LASHOF: Get some good focus
13 groups that are representative and not necessarily
14 just the people who come forward, who, you know --
15 DR. CAPLAN: I think that's a very good
16 idea.
17 CHAIRPERSON LASHOF: Particularly going to
18 be the people who have problems, clearly.
19 DR. CAPLAN: Yes.
20 CHAIRPERSON LASHOF: I mean, that's
21 expected. But if we want a broader, to have focus
22 groups that we could explore a number of these issues
23 with.
24 DR. CAPLAN: I think that's a great idea.
25 CHAIRPERSON LASHOF: Okay.
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1 Phil?
2 DR. LANDRIGAN: Although I think these
3 issues of the vaccine and the antidotes -- they are
4 basically research questions. And what we need to do
5 is look at the state of the data and the data gaps.
6 Where has the testing been adequate? Where is it
7 deficient?
8 CHAIRPERSON LASHOF: Yes.
9 DR. LANDRIGAN: What do we need to know?
10 CHAIRPERSON LASHOF: On that aspect, I
11 think there's no question we could get it. I was
12 thinking in terms of what people were told, how the
13 felt about it and so on.
14 Elaine?
15 DR. LARSON: Well, actually the
16 interesting about the issues that Arthur raises is
17 that they are not research questions. They are
18 ethical questions. They are questions of values. And
19 they are questions of sort of sociologic perspective.
20 And that's beyond our charge.
21 Although I do think that within the
22 context of our, you know, number 3 charge, if you
23 will, we don't have, unless I am missing it, a charge
24 to deal with the bioethics of and so forth. But I
25 think it does go in number 3.
117
1 CHAIRPERSON LASHOF: I think it goes in
2 number 3. And clearly we are expected to, or Art
3 wouldn't be on this panel. So I think his presence
4 here tells us that we ought to be looking at those
5 kinds of issues.
6 DR. BALDESCHWIELER: Well, a major issue
7 of how you behave under a strategic situation of great
8 uncertainty is the quality of the intelligence
9 information that is available. That is, if one knew
10 for sure what the opposition had and their doctrine
11 for using it, you would behave, of course, very
12 differently.
13 CHAIRPERSON LASHOF: That may or may not
14 be part of the classified material that may or may not
15 get unclassified in time for us to discuss it
16 publicly. But all of us I suspect at some point will
17 have our clearance confirmed. And we will be able to
18 look at those things in closed session, anything that
19 we can't have open.
20 Anything else on that score?
21 (No response.)
22 CHAIRPERSON LASHOF: I think the
23 pyridostigmine bromide issue --
24 DR. CAPLAN: Joyce, one other comment
25 which I am not sure about how to respond to -- and it
118
1 goes into this problem we got into earlier about
2 trying to comment on the VA or the CHAMPUS program
3 generally, and keeping our focus on the veterans and
4 the Gulf War issue.
5 But clearly some of the problems that come
6 up -- and we were joking about this yesterday -- but
7 it's not a joke from the point of view of access to
8 services.
9 Are problems in the system -- I mean the
10 American healthcare system, not problems -- anybody
11 would have problems who has a preexisting condition or
12 a child with a disability.
13 There are just some problems in the
14 system. An we are not going to review and fix all
15 that. But it seems to me, we may simply have to -- it
16 may be necessary for us to say something about some of
17 the equity or access problems that people face.
18 They are not due to, necessarily, Gulf War
19 experience. They are due to problems that are still
20 unsolved in healthcare. So I don't propose that we
21 review the system again. I think that was last year's
22 project. But we --
23 CHAIRPERSON LASHOF: We didn't solve it
24 last year.
25 DR. CAPLAN: We didn't solve it.
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1 CHAIRPERSON LASHOF: So it --
2 DR. CAPLAN: I think it's been raised
3 again at this year's Congress. But --
4 DR. CUSTIS: If we did solve it, the
5 solution would have been simple.
6 DR. CAPLAN: Right. But we may need to
7 flag that as -- that some of the things we've heard
8 even yesterday in testimony were problems of the
9 system. They are not VA problems. They are problems.
10 CHAIRPERSON LASHOF: I think that's valid.
11 And I don't see how we can avoid without, as you say,
12 reviewing all the healthcare system inequities, but we
13 need to take cognizance of it.
14 Other thoughts about all this before we
15 now dig into in -- and it's so good we are going to do
16 all of this. Just how are we going to do it?
17 (No response.)
18 CHAIRPERSON LASHOF: As I said, we will be
19 staffing up in each of these areas and have
20 consultants available to us as well. And then the use
21 of scientific panels. So I'd like to move at this
22 point into the strategies for doing this. And that
23 means a number of meetings, kinds of panels, what are
24 the issues, which ones, the priority for doing them.
25 The question of subcommittee formats,
120
1 whether we break up into some subcommittees. And
2 especially if we want to do numerous hearings around
3 the country it may not be practical for all of us to
4 attend every hearing.
5 But it may be that we could develop some
6 subcommittees and hold hearings in different parts
7 without the full Committee.
8 Why don't we start with that issue as a
9 whole? Are -- should all of our meetings be full
10 Committee? We are a relatively small Committee.
11 There are 12 of us. Ten of us were able to make
12 today's.
13 We thought we would have had 11, but
14 something came up at the last minute that -- for
15 General Franks. We will continue to -- and this one
16 was called in very short order after your appointment
17 and did interrupt people's vacations.
18 We'll have enough time to hopefully get on
19 everybody's schedules. But everybody has busy
20 schedules. So what are your feelings about number of
21 meetings, subcommittees, small --
22 Andrea?
23 DR. TAYLOR: Sometimes I think it's going
24 to be important that we work in subgroups to discuss
25 these issues further and come up with -- and possibly
121
1 come up with a scheme.
2 It might -- you know, for those of us who
3 are interested in exposure assessment, for instance,
4 I think maybe working in a small group to develop a
5 plan and present it to the full body or something of
6 that sort would be good.
7 The same with some of the other areas,
8 healthcare, primary care. Using it as a subcommittee
9 and then bringing back a full report to the entire
10 body to accept or adopt may be useful.
11 CHAIRPERSON LASHOF: Elaine?
12 DR. LARSON: Along those lines I was going
13 to make a similar suggestion. And that is that we
14 have some subcommittees with specific assignments as
15 much as possible related to the seven charges that we
16 have.
17 But also that each of our subcommittees
18 has assigned staff so that we are working in
19 subcommittee with staff who are collecting data and
20 then the group is assigned to collate the data or do
21 whatever with it.
22 CHAIRPERSON LASHOF: Yes.
23 DR. LARSON: We actually -- I was sort of
24 taking notes as we were talking about ideas and
25 processes. And we actually had laid out some plans
122
1 that I think we could move from there on. One is for
2 charges 2, 3, and 4, we talked about case studies,
3 field visits, and focus groups.
4 Now, for those we may or may not want full
5 committee. There may be some where we'll have a field
6 visit that we'll do, you know, something in a region
7 or whatever. For charges 1 and 5 through 7, first
8 before we can do anything else, we need staff work.
9 CHAIRPERSON LASHOF: Right.
10 DR. LARSON: And so we have got to get all
11 of that done. And I liked your previous idea about
12 starting with number 5, the external reviews, and see
13 where we are with that. And sort of look at where the
14 recommendations are in process. That might be a next
15 full Committee meeting that we need to do.
16 And then for charges 6 and 7 which have to
17 do with risk factors and chemical and biological
18 weapons, there you suggested that we need some expert
19 testimony, which again is full committee work, I
20 think.
21 CHAIRPERSON LASHOF: I think that's an
22 excellent summary. I agree with that.
23 Anyone else want to add to Elaine's --
24 John?
25 DR. BALDESCHWIELER: Let me express a
123
1 concern about credibility. That is to say if we
2 divide the work to -- in too many fine segments, then
3 I guess I am concerned about our individual
4 credibility in those areas where we have a lot of
5 expertise.
6 It seems to me that the issue of
7 credibility would be a highlighted. An important
8 aspect of this Committee is that the Committee as a
9 whole, I think, brings credibility to these issues.
10 That is, if your resident chemist is the
11 only one who speaks to the chemical warfare issues, it
12 seems to me that's somewhat precarious.
13 CHAIRPERSON LASHOF: But I would think --
14 let me react first before I ask everyone else to
15 react. My interpretation -- and, Elaine, correct me
16 if I am wrong -- would be that the subcommittee would
17 work through with staff on that and present something
18 to the full committee.
19 DR. LARSON: That's right.
20 CHAIRPERSON LASHOF: But as resident
21 chemist, you would have to convince all of us first
22 before we would accept it. Not just we'll just take
23 it.
24 DR. BALDESCHWIELER: A Committee consensus
25 it seems to me is a critical part of our output.
124
1 DR. TAYLOR: And that would be my first
2 comment -- is that if we worked subgroups, which I
3 think is a good idea because of all the material that
4 we have, we would bring it back to the full Committee
5 for any kind of acceptance or otherwise rejection of
6 what the recommendations are. That kind of thing.
7 CHAIRPERSON LASHOF: Elaine?
8 DR. LARSON: Another point is that while
9 I think at least one Committee member should be
10 present at each focus group or case study
11 presentation, just in terms of cost benefit and
12 efficiency and getting more information, we could
13 convene some of these focus groups or case studies,
14 however we decide to do it, in various parts of the
15 country, making it possible for subgroups of us to get
16 together with people who might have more difficulty
17 traveling -- some people who might not be able to come
18 here for a variety of reasons that would like to be
19 heard and need to be heard.
20 CHAIRPERSON LASHOF: Yes?
21 DR. RIOS: I was going to ask John a
22 question. Is your concern that if you have a
23 subcommittee and the chairperson is a chemist, say,
24 and that person makes a recommendation -- you are
25 concerned that there is no objectivity insofar as the
125
1 full Committee being able to hear the information
2 that's presented to the subcommittee?
3 I mean, I understand where you are coming
4 from because I think credibility is very important.
5 Are you saying that it's important that we hear all
6 the evidence?
7 Or maybe it could be taken care of by
8 having the subcommittee chair not make
9 recommendations, and just say here is what I heard,
10 and summarize the information? I am trying to get at
11 what you were concerned about.
12 DR. BALDESCHWIELER: I think credibility
13 is the central issue of this exercise, and that
14 operating as individual experts in our own fields, I
15 think that credibility is likely to be questioned.
16 I would say in epidemiology, for example,
17 the same kind of concern. So that I think enough of
18 us have to hear enough of the story from all of its
19 aspects to, you know -- to give a credible consensus
20 view.
21 DR. RIOS: So you are arguing against a
22 subcommittee type of format?
23 DR. BALDESCHWIELER: Or at least a
24 division into subcommittees so small.
25 DR. TAYLOR: I'm not thinking of just one
126
1 person per subcommittee though. I am thinking a
2 little more -- there are what -- 11 of us -- maybe
3 three in each group and don't have more than three
4 focus groups at a time before we decide to tackle
5 something else, three or four.
6 CHAIRPERSON LASHOF: Phil?
7 DR. LANDRIGAN: There may be a useful
8 model here in the way that the National Institutes of
9 Health review grant applications. A grant application
10 comes in and it's assigned to a study session usually
11 consisting of ten or a dozen people, as many as we
12 have on this committee.
13 And the ultimate verdict on the grant is
14 rendered by the whole study session who vote and
15 assign ratings. But within the study session, usually
16 two people, sometimes three, are assigned primary
17 responsibility on the basis of their expertise for
18 reviewing the grant and informing the rest of the
19 committee about the grant.
20 And then there is a discussion. And the
21 committee may entirely accept the recommendation of
22 the primary reviewers or further aspects may emerge.
23 And maybe that's the way to, on the one hand maximize
24 efficiency, because none of us is doing this as a
25 full-time job.
127
1 It's all -- for all of us it's in addition
2 to something else. And it seems to me cumbersome to
3 think that every one of us can attend in full detail
4 to every aspect of this.
5 And yet, at the same time, it's a way to
6 protect the credibility of the one or two people with
7 particular expertise that take primary responsibility
8 for reviewing a particular aspect.
9 CHAIRPERSON LASHOF: Is that, do you
10 think, responsive, John?
11 DR. KNOX: Well, and I think too, if you
12 are interested in a certain area, you certainly should
13 not be restricted from not seeing what that
14 subcommittee does.
15 If you would like to, you know, be
16 involved in more than one subcommittee, or just sit on
17 one and see what all the information received is, I
18 think you should be welcome to do that.
19 CHAIRPERSON LASHOF: David?
20 DR. HAMBURG: I think that the
21 subcommittee structure should really follow the task
22 requirements that we encounter. I don't see any need
23 to -- in fact, it would be very undesirable to say
24 well, we are going to essentially, arbitrarily have so
25 and so many subcommittees or do everything in the
128
1 first instance by subcommittee.
2 On the other hand, it seems to me almost
3 inevitable that the time we have available and the
4 complexity of the task will call for some kind of
5 efficient working arrangements.
6 And subcommittees would be a part of that,
7 including, by the way, conference calls, not
8 necessarily their meeting all the time. But small
9 subcommittees could move the agenda ahead without
10 having, so to say, voting rights to settle the issue.
11 Now, on credibility, John, I think you are
12 right and wrong. The credibility thing cuts both
13 ways. To have a chemist of your stature gives us
14 credibility that we are not, you know, wandering in
15 the dark with respect to chemical issues.
16 On the other hand, those of a suspicious
17 turn of mind may assume that having somebody who has
18 lived his life in the chemical community gives him a
19 warp, a serious warp, a deficiency -- he knows too
20 much.
21 It cuts both ways, depending in some part
22 on who the audience is. And I think we need both. We
23 need your expertise in chemistry or Phil's in
24 epidemiology. We desperately need that. We also need
25 to put some people at certain times around you so that
129
1 there are multiple perspectives on your expertise.
2 And we can do that.
3 DR. BALDESCHWIELER: I think you have said
4 it very, very well. Were right on target.
5 CHAIRPERSON LASHOF: Okay. In that light,
6 do we need to identify any of the subcommittees at
7 this point? Or do we leave that for staff and myself
8 to be in contact as we try to work through the
9 project?
10 DR. HAMBURG: I think you and staff
11 should, in the next week or two, intensively think
12 about this.
13 CHAIRPERSON LASHOF: We'll be on the phone
14 constantly. But I would -- it's obvious that John and
15 Andrea -- and, Phil, I am afraid we'll have you on so
16 many subcommittees, Phil.
17 We'll be looking at some of the
18 environmental risks and the biological and chemical,
19 as well as wanting you on the epidemiological. But
20 that's a natural grouping.
21 And medical care is a natural grouping
22 with Elaine and Marguerite and Art and Don. You know,
23 there is some natural -- I'll float around. But as
24 you say, we'll work on this as we try to -- but what
25 about the oral briefings for the Committee.
130
1 Well, maybe -- what things could be
2 handled in focus groups with then a report from the
3 focus groups to the full Committee. This being focus
4 groups of consumers or veterans really versus what
5 things you would like to see done on expert panels
6 brought forward.
7 They are quite different. I shouldn't put
8 those one against the other. We really identified
9 some areas that lend themselves to focus groups and
10 then some that lend themselves to expert panels.
11 CHAIRPERSON LASHOF: David?
12 DR. HAMBURG: Yesterday it seemed to be
13 that we heard expressions of anguish in two themes,
14 both of which might be suitable for focus groups to
15 clarify. One had to do with the themes of conversion
16 -- coercion -- sorry.
17 Coercion, involuntary participation as in
18 immunization or prophylactic medication. Begin forced
19 to do something without much information and without
20 a choice to opt out and so on. And to understand
21 those kinds of issues it is conceivable that a focus
22 group would convene.
23 We also heard the theme of neglect. Long
24 waits for VA care. Slow processing of disability
25 applications. Denial of benefits and so on. I think
131
1 the themes of coercion and neglect came up over and
2 over again. And those are kinds of issues that
3 professional focus groups, well designed focus groups,
4 have been able to clarify in other settings.
5 CHAIRPERSON LASHOF: Okay. I think those
6 are --
7 Yes? Elaine?
8 DR. LARSON: I think we can proceed
9 simultaneously with two things. First of all we can
10 set up for our next meeting, which I assume will be in
11 the fall. Some expert testimony related to the
12 specific of chemical and biologic and environmental
13 potential hazards, etc.
14 We can set those up, and staff can work
15 with the panel and with others to find out the best
16 way to get the information on that. We can also
17 decide how we want to proceed with these focus groups.
18 The focus groups can't be done in full Committee.
19 CHAIRPERSON LASHOF: No.
20 DR. LARSON: The results need to be
21 presented to full Committee.
22 CHAIRPERSON LASHOF: Right.
23 DR. LARSON: So they need to start now as
24 well and be on -- be in process. They probably won't
25 be ready for sort of synthesis and presentation at the
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1 next meeting in the fall. But in order to have them
2 ready for the one after that, we are going to have to
3 start them now.
4 And so those two things can go on while at
5 the same time, either before or after lunch, we should
6 have some more discussion about whether we or
7 subgroups want to do, in addition to the focus groups,
8 which we don't have to do, except attend.
9 CHAIRPERSON LASHOF: Yes.
10 DR. LARSON: Do we want to do something
11 else in the way of case study panels or in the way of
12 field -- we threw these words around, and we need some
13 more discussion on what we want to do with that. So
14 I think three things going on simultaneously are going
15 to have to occur to get us done in time.
16 CHAIRPERSON LASHOF: Well, you know, I --
17 Robyn? Please?
18 DR. NISHIMI: I just wanted to say one
19 thing about the focus groups so not to raise your
20 expectation that you would even get this by the second
21 meeting, because obviously this will require a fair
22 amount of planning as to what we want.
23 And then we will have to select the right
24 contractor who will then have to get the proper
25 groups. So I just, you know -- I don't want to --
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1 DR. LARSON: No. I agree. Even more
2 reason why we start now thinking about when we want to
3 do that so that we'll have these things lined up and
4 can get the work done.
5 CHAIRPERSON LASHOF: Yes. Well, actually
6 I was going to say if there -- we talk about general
7 principles about this. Then we try to say what should
8 the priorities -- so if we can identify what things we
9 will want to have panels here for the full Committee.
10 What things we have just done on the
11 focus. What we want to do in field hearings where we
12 will hear from veterans in different areas -- separate
13 from the focus groups because I think the focus group
14 is a different kind of structure than the kind of open
15 hearing where anyone, you know, wants to present their
16 position.
17 Do we decide in principle how we feel
18 about those things? Then I think we would try to set
19 up a time line of which are the first ones to do,
20 considering that we have a six-month report due and
21 then a final report that is a year and a half from
22 now.
23 And the six-month report -- I am saying --
24 we'll fudge a little on six months, the end of
25 February, first of March.
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1 No?
2 DR. NISHIMI: No. There's no fudging on
3 that date.
4 CHAIRPERSON LASHOF: There's no fudging on
5 that date.
6 DR. NISHIMI: No. No.
7 CHAIRPERSON LASHOF: Mid-February?
8 DR. NISHIMI: February 14th and 15th would
9 be six months.
10 CHAIRPERSON LASHOF: Okay. We have our
11 marching orders. February 14th and 15th we have to
12 have an interim report ready.
13 DR. CAPLAN: Joyce?
14 CHAIRPERSON LASHOF: Yes.
15 DR. CAPLAN: One thing I would like to
16 suggest is that the next meeting be devoted to the
17 compilation of the recommendations about what
18 information to acquire and some initial step by us to
19 assess that.
20 Because if we are going to say something
21 by February 14th, we want to leave ourselves time to
22 both find out what these recommendations are and then
23 ask about them again if we need to, since that is
24 going to become a crucial part, I suspect, of the
25 interim report.
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1 How well are we doing, given the task
2 that's been put out there to four groups and
3 subsidiary studies to get information? How well is
4 that happening?
5 I think it would be appropriate -- I don't
6 think there is any shift that is going to take place
7 on the biological and chemical warfare area, in terms
8 of what's known, to schedule some expert testimony
9 about that.
10 That simply exists. And the same thing is
11 true about the vaccines and the various prophylactic
12 things that were tried out. We could certainly look
13 to schedule those.
14 It does seem to me we should start to
15 think about the adequacy of care and having some
16 hearings or the ability to collect information out in
17 the field in different locations. I'm not ready yet
18 to say exactly what questions we need to ask.
19 But we certainly need to standardize them.
20 We have been yelling at everybody else to get
21 standardized questions. And if we are going to go out
22 in the field, we have to come with standardized
23 questions to ask to make sure that we can do that.
24 And that's going to be a staff
25 responsibility. And it's going to take a little time
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1 logistically to set those up. So it does seem to me
2 that for the next meeting, which I gather you are
3 talking October --
4 CHAIRPERSON LASHOF: We are talking about
5 mid-October or around --
6 DR. CAPLAN: So that's pretty fast. We
7 might look for the recommendations, try to compile
8 that, see how people are meeting the goals that have
9 been set in terms of getting information, and maybe
10 some of these panel presentations about the areas that
11 at least look like to me they are -- I don't want to
12 say they are settled -- but they are -- the expertise
13 is there.
14 What's known is known. It's not going to
15 change unless we get one of our surprise defector
16 announcements about biological warfare. But short of
17 that, that may be a place to go in the short run.
18 CHAIRPERSON LASHOF: Well --
19 DR. CAPLAN: I'm concerned when we get
20 going on the recommendations that --
21 CHAIRPERSON LASHOF: I agree. I mean, one
22 way to look at our priority of deciding what we want
23 at which level is what do we want to try cover in that
24 first interim report?
25 DR. CAPLAN: Yes.
137
1 CHAIRPERSON LASHOF: And one way is to
2 look at as -- well, some things that are easy to
3 handle we can get out of the way, like chemical and
4 biological, the other is to say well, you know, that's
5 not that burning and immediate an issue. We can
6 handle that later.
7 I think we have to balance which way to
8 go. I think, clearly, looking at the recommendations
9 that have been made, because there is no point looking
10 at those a year and a half from now.
11 DR. CAPLAN: Right.
12 CHAIRPERSON LASHOF: We ought to look at
13 those now and focus our interim report around what are
14 the recommendations that have been made, and where do
15 we stand on those?
16 And maybe if we all agree on that, then
17 trying to determine just what are the panels is not
18 necessarily a good idea at this meeting. We may need
19 some staff work over the next month or so.
20 I don't know, Robyn.
21 DR. NISHIMI: I'm sorry. I --
22 CHAIRPERSON LASHOF: I -- yes. You got
23 distracted too.
24 Well, let's sit on this and mull it at
25 lunch. And -- because I think it's noon. And I don't
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1 know how all of you are feeling, but we've had a
2 pretty intensive morning.
3 Maybe this is a good point to take our
4 lunch break, think about some of this over noon. And
5 we'll com back after lunch and try to go through a
6 time line, priorities for hearings, staff hearings,
7 and so on.
8 (Whereupon, the proceedings went off the
9 record at 12:01 p.m. and went back on the
10 record at 1:36 p.m.)
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1 A F T E R N O O N S E S S I O N
2 1:36 p.m.
3 CHAIRPERSON LASHOF: I believe we're ready
4 to resume. Dr. Landrigan had to leave to catch a
5 plane. And some of the other Committee members may
6 need to leave before our official adjournment at 3:00.
7 But I would appreciate it if the others
8 could hang in here with us until we complete our
9 business. I think we made a lot of progress this
10 morning in going through the charter, what we hope to
11 accomplish and some of the methodologies we'll use.
12 I think at the break we were up to the
13 point of maybe exploring a little further what are the
14 areas we would like to have full briefings on for the
15 full Committee with scientific panels, not necessarily
16 the time order for them, but just what are the subject
17 areas.
18 And I'd like to go back to that question
19 of subcommittees and get a feeling from each of the
20 members of the areas they would like to be most
21 involved in.
22 Then I think we ought to be at the point
23 where we might try to set some priorities and talk
24 about the frequency of meetings, and at least come to
25 an agreement on the next two or three meetings, not
140
1 the specific dates, but roughly the timing and the
2 subject matter for those meetings. And then we can go
3 from there.
4 So with that in mind, let me just open it
5 up again for discussion of subjects for full panels
6 for the full Committee. We did identify clinical care
7 as one. We identified biologic, meaning the
8 immunizations and -- remind me.
9 Chemical and biological. Oh, biological
10 I already had. And chemical war. Oh, the infectious
11 diseases. We wanted to get some good scientific
12 panelists that would deal with the mycoplasma with the
13 microsporidia issue and with Q fever, leishmaniasis,
14 and any of the other tropical diseases that possibly
15 be clinical or subclinical infections.
16 Are there others that -- psychological
17 stress. Others?
18 DR. LARSON: The viral fighters were
19 mentioned. The smoke. Don mentioned something.
20 CHAIRPERSON LASHOF: Don, was the --
21 Well, the -- the environmental exposure,
22 certainly.
23 DR. TAYLOR: And that would include, I
24 think, some of the things that we don't necessarily
25 think of environmentally, with reference to their
141
1 living area. The kerosene use, use of the heaters.
2 And I think we should --
3 CHAIRPERSON LASHOF: Yes. I think living
4 conditions, sand, particulates.
5 DR. TAYLOR: Right. Particulates. All of
6 those should be included.
7 CHAIRPERSON LASHOF: Kerosene. All of the
8 environmental possible exposures we would probably
9 want a scientific panel of experts.
10 Now, some of these -- we're looking at
11 actual members from DOD, VA, certainly in clinical
12 care, but -- well, let's run down them a little bit
13 and talk about the kinds of people we're looking and
14 what would be official and where we would look for
15 other scientific expertise.
16 In the clinical care, we want to hear from
17 the physicians, the VA physicians, and the DOD
18 physicians, who have been actively involved in the
19 care of veterans. But in addition, we wanted to hear,
20 I believe, from some of the other physicians who have
21 been caring for veterans.
22 Rolando, you had some physicians in Texas
23 who wanted to present.
24 We had some referred to yesterday at the
25 hearing. And I would think we would want to hear from
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1 some of them.
2 Are there other thoughts along that line?
3 Art?
4 DR. CAPLAN: We just wanted to make sure
5 that we had the nursing allied health input. And
6 there are people in rehab now --
7 CHAIRPERSON LASHOF: Yes.
8 DR. CAPLAN: That are doing that.
9 CHAIRPERSON LASHOF: We would want to hear
10 from some of those of the special referral centers.
11 DR. CAPLAN: Right.
12 CHAIRPERSON LASHOF: That are doing some
13 of that work. So, you know, that could be a session,
14 a day or more in itself just to deal with these
15 various clinical aspects -- be the subject of one
16 whole meeting.
17 Okay. And the biologics, I would think we
18 would want to get some of the national experts in
19 vaccine and the vaccine development.
20 We would want staff to do some background
21 work for us and get as much facts as we can about
22 where the vaccine is manufactured and how it --
23 whether it's similar to what is used by other troops,
24 a point you raised, John.
25 And then we want some of the infectious
143
1 disease experts in the country to tell us what we know
2 about these vaccines and how they have been used
3 before and so forth.
4 Anything else on that score?
5 (No response.)
6 CHAIRPERSON LASHOF: Okay. On chemical
7 warfare we have discussed the issues that we want
8 there. We are bringing someone on full time on the
9 staff who will be doing thorough review of all the
10 material available and we'll be guided by staff
11 reports to us -- and then decide later, and by the
12 subcommittee work.
13 DR. RIOS: Let me see if I understand
14 this. Is that going to be a different committee or a
15 different set of hearings from the environmental
16 exposure?
17 CHAIRPERSON LASHOF: Yes. I would think
18 that chemical warfare is separate -- well, it's a
19 separate issue from environmental exposure. They are
20 looking at different things. It may be the same
21 subcommittee. They are both environmental. But it's
22 a particular issue in that area.
23 DR. RIOS: Okay.
24 CHAIRPERSON LASHOF: It may well be that
25 we cover both at the same meeting. That would be
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1 logical.
2 DR. TAYLOR: Right.
3 DR. BALDESCHWIELER: And don't forget the
4 prophylactic drug issue.
5 CHAIRPERSON LASHOF: Oh, yes.
6 Prophylactic drugs.
7 Be sure to push your mic.
8 DR. TAYLOR: Prophylactic drug use goes
9 with the vaccines that they were --
10 CHAIRPERSON LASHOF: Yes. When we do the
11 pyridostigmine bromide. We can decide how to group
12 these and what's the best ones to do at the same
13 meeting and which ones go with others. But I think
14 maybe we could leave that to staff and myself to work
15 on.
16 Then the infectious disease aspect -- that
17 might be combined with the biologic immunization work.
18 David, how would you like to see us and
19 what kind of panels would you like to see us pull
20 together in the psychological stress factors?
21 DR. HAMBURG: Well, in principle, the same
22 -- use the same kind of criteria as for the other
23 problem areas. There have been -- for example, right
24 after the Gulf War, the National Institutes of Mental
25 Health put out a request for proposals, and they have
145
1 stimulated quite a number of research studies.
2 They are underway around the country. I
3 think we should find out from NIMH who are the leading
4 investigators in this field and get people who are
5 really at the frontier on the different facets of
6 stress response. Plus, we should probably tap into
7 the basic research community on neuroendocrine
8 relations.
9 DR. TAYLOR: The American Public Health
10 Association has a sort of a psychological stress
11 group. And they are planning a big conference. I'm
12 not certain if it's this year or the following year.
13 Bob Karasek, Jeffrey Johnson from Johns
14 Hopkins -- there are quite a few folks in the field
15 who are doing work on psychological stress. So we may
16 want to tap into what they are doing and find out.
17 CHAIRPERSON LASHOF: In all these areas,
18 you know, as you go home and think about them all, if
19 you identify any experts that you personally know in
20 an area that you think would be key for a panel,
21 please let staff know. Feed that back regularly.
22 Art?
23 DR. CAPLAN: This isn't actually about
24 substance, it's about process. And I just wanted to
25 get this in before I leave. Just two comments.
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1 One is I think we should let people know,
2 when we have expert panels, that we are certainly
3 willing to take written materials in in terms of
4 asking questions about what was said or things for us
5 to ask about. I don't mind being open to what anyone
6 out there wants to raise for us to ask.
7 And I think it should be -- I joked before
8 about an 800 number -- but I think we need some
9 mechanism -- if we say we are going to have a hearing
10 on X and someone wants to send in a question and say,
11 "Why don't you ask them about Y?" -- when you get to
12 the hearing, they should have a place to do that.
13 CHAIRPERSON LASHOF: Yes.
14 DR. CAPLAN: It just seems to me that we
15 can be open. We don't have to be the sole source of
16 every question that is out there. And it seems to me
17 too that it would be useful for us in looking for even
18 comments about themes and topics to be open to
19 suggestions as well.
20 So what I'm saying is as we make the
21 agenda up, I have the correct thoughts, but I don't
22 mind hearing from other people in the world who might
23 have other thoughts.
24 CHAIRPERSON LASHOF: It's a point well
25 taken. And, you know, I think it was clear this
147
1 morning as we identified some of these issues -- they
2 were clearly based on what we heard yesterday.
3 And some areas we intend to explore are
4 merely in response to those comments. And in that
5 same spirit, we will certainly be open. I hope
6 everyone at this point has the address for the office
7 and would urge that all communications be addressed to
8 Dr. Nishimi, who is the chief of staff, the executive
9 staff director for the Committee. The address of the
10 Committee is 1411 K Street, N.W. And the zip is --
11 DR. NISHIMI: Two, zero, zero, zero, five
12 dash three, four, zero, four (20005-3404). Suite
13 1000.
14 CHAIRPERSON LASHOF: Okay.
15 John?
16 DR. BALDESCHWIELER: I wondered if
17 epidemiology will be on your list of major issues?
18 CHAIRPERSON LASHOF: Well, certainly the -
19 - that's right. We did say that one of the first
20 things we'd be doing would be to look at all the
21 recommendations that have been made and whether they
22 have been implemented.
23 And we'll certainly be having a full
24 hearing around that issue as the staff get that work.
25 And key among that will be the recommendations for the
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1 epidemiologic studies, the issues we raised this
2 morning and yesterday, the comparability of the
3 different epidemiologic studies that have been
4 started.
5 And I think getting some other
6 epidemiologists to testify after they have reviewed
7 that's planned would be worthwhile.
8 Other things we need to flag for future
9 hearings?
10 (No response.)
11 CHAIRPERSON LASHOF: Okay. Well, I think
12 we've covered that. Now, the question of
13 subcommittees. I wonder if maybe the most efficient
14 way is to -- for me to just go around the table and
15 for each of you to indicate the areas you'd be most
16 interested in working on if we develop subcommittees.
17 And how we develop them and the timing of
18 them and so on will depend on further staff analysis
19 of how fast we get our various staff on and how
20 quickly they can go through the material that's
21 already in existence.
22 But, Andrea --
23 DR. TAYLOR: My interest, I guess, is the
24 environmental exposure, exposure assessment area
25 regarding -- from chemical warfare to some of the
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1 other exposures that we've talked about earlier.
2 CHAIRPERSON LASHOF: Fine.
3 Rolando?
4 DR. RIOS: My interest would also be in
5 chemical and biological warfare and the environmental
6 exposure issues.
7 CHAIRPERSON LASHOF: Elaine?
8 DR. LARSON: Infectious diseases and the
9 clinical systems issues.
10 CHAIRPERSON LASHOF: Marguerite?
11 DR. KNOX: Are you lumping the
12 pyridostigmine under the clinical -- the anthrax and
13 that under the clinical? Or is that environmental?
14 CHAIRPERSON LASHOF: That's a good
15 question. It crosses all boundaries, doesn't it?
16 It's involved with both. You are interested in it,
17 clearly.
18 DR. KNOX: Right. And also the ethical
19 issues.
20 CHAIRPERSON LASHOF: And the ethical
21 issues. Fine.
22 DR. HAMBURG: From your list of seven, I
23 guess I would do either research or clinical care or
24 implementation of past recommendations. And -- either
25 one of those.
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1 CHAIRPERSON LASHOF: Okay.
2 Don?
3 DR. CUSTIS: Clinical care and infectious
4 diseases. Are you going to have the staff handle the
5 implementation of past recommendations? Or is that
6 also --
7 CHAIRPERSON LASHOF: I think that will be
8 one staff will do most of the initial work on and
9 we'll have complete hearings around. I doubt that
10 we'll do that one in subcommittee. But I don't know.
11 But if so, we'll put it down.
12 DR. CUSTIS: I have some particular
13 interest in some of those recommendations.
14 CHAIRPERSON LASHOF: Right.
15 DR. CUSTIS: I think clinical care and
16 infectious diseases.
17 CHAIRPERSON LASHOF: Fine.
18 DR. CAPLAN: I am interested in the --
19 wherever the anthrax and prophylactic agents go. And
20 I am interested in clinical care.
21 CHAIRPERSON LASHOF: And, John, you are
22 the natural --
23 DR. BALDESCHWIELER: I think I would
24 follow all those things with the molecular basis,
25 including chemical and biological warfare, the
151
1 environmental exposures, prophylactic drugs,
2 immunization, and the assays for the infectious
3 diseases.
4 CHAIRPERSON LASHOF: Fine. Thanks.
5 Well, you can see why we were all
6 selected. We really do cover the waterfront. And I
7 think that's a good way to get about. I guess, then,
8 there's the question of what we think the priorities
9 ought to be, the order in which we might be taking
10 these up.
11 For staff, the first priority will be
12 gathering the data on all the previous
13 recommendations, previous reports, getting that
14 analyzed, and beginning to find out, and tracking that
15 material. My guess is they won't be ready to report
16 on that for a couple of months.
17 Robyn, let me turn that part to you.
18 DR. NISHIMI: I would say not in
19 September. But I think we can start, you know, laying
20 out a framework, certainly, by October, put together
21 that typology, you know, have started the interview
22 process of departments as well as the end users.
23 But certainly, the typology could
24 presumably be completed by October and some
25 preliminary information gathering be presented to the
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1 Committee.
2 CHAIRPERSON LASHOF: Okay.
3 Any questions on that? And we can aim for
4 that for an October session.
5 (No response.)
6 CHAIRPERSON LASHOF: What would be our
7 next priority we would like to see addressed? Does it
8 matter to us? Or should we wait and see how staff are
9 moving on all these areas and --
10 DR. LARSON: Using your criterion that you
11 discussed before lunch -- and that is, what do we want
12 to put in that first six-month report --
13 CHAIRPERSON LASHOF: Yes.
14 DR. LARSON: That interim report. Clearly
15 we need to be finished with reviewing the
16 recommendations. And then it -- maybe the next
17 priority might have something to do with if there are
18 problems of access, waiting times, clinical issues.
19 We know that the research studies are
20 beginning to get going. Perhaps the next thing to do
21 is to address some of those things that might hinder
22 the rest of the progress --
23 CHAIRPERSON LASHOF: Yes.
24 DR. LARSON: Of inquiry. So we might want
25 to focus on getting those focus groups started and
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1 getting -- looking at the clinical groups. And we had
2 also talked before lunch about the possibility on
3 these panels of patients. Now, that may be a
4 different panel.
5 CHAIRPERSON LASHOF: Well -- oh, that's
6 right. We wanted to come back to the question of
7 hearings around the country.
8 DR. LARSON: Yes.
9 CHAIRPERSON LASHOF: And I think those
10 will be the kind of hearings, like we had yesterday
11 afternoon, that we might hold in different spots
12 around the country. But I think staff will have to do
13 research as to where the concentration of vets are.
14 And I guess the issue for us is whether
15 those need to be the full Committee, or, we hold some
16 regional hearings with two, three, four
17 representatives of the Committee at each one of the
18 hearings.
19 DR. LARSON: Well, that's one issue. And
20 then, the other issue is we talked about doing some
21 case studies walking through the system.
22 CHAIRPERSON LASHOF: That's right.
23 DR. LARSON: For what happens when someone
24 enters the system as an active duty person or as a new
25 veteran in the VA system. And just walking through
154
1 that system with them as a case study.
2 CHAIRPERSON LASHOF: Yes.
3 DR. LARSON: Which is a little different
4 than the focus groups --
5 CHAIRPERSON LASHOF: Yes.
6 DR. LARSON: And the individual hearings.
7 CHAIRPERSON LASHOF: Right. Right.
8 DR. LARSON: And I would suggest that we
9 might want to do that sooner rather than later to
10 approach some of the clinical systems problems.
11 CHAIRPERSON LASHOF: Is that possible,
12 Robyn?
13 DR. NISHIMI: Sure. I mean, we start on
14 all of these initially. But I think in terms of what
15 one can begin to do immediately in the near term to
16 gather these facets --
17 CHAIRPERSON LASHOF: Right.
18 DR. NISHIMI: For, certainly, the field
19 hearings because that's the type of thing where you'll
20 be able to get immediate impact.
21 So I do think that if the Committee could,
22 you know, reach some kind of sense of whether they
23 want to do this as a full Committee or whether they
24 feel that subcommittees of some combination or
25 combinations is adequate is an important thing for us
155
1 to settle today.
2 DR. LARSON: Maybe one way to approach it
3 with the case studies is to use the same format and
4 then have it again.
5 We could do more if we did in two or three
6 groups a similar case study in a different -- like at
7 lunch, you were saying, Don, that each VA is
8 different.
9 There is a wide quality and spectrum of
10 care across the VAs depending on whether they are
11 associated with academic health centers or out in a
12 community or whatever. So we might want to select --
13 DR. CUSTIS: You shouldn't quote me.
14 DR. LARSON: Well, I'll quote myself then.
15 They are different. But anyway, it might be nice to
16 have more than one of those case studies.
17 DR. CAPLAN: One thing we could do is
18 agree, I think, that it would be good to have small
19 groups going out to these hearings because we'll get
20 more information and we'll give more people the
21 opportunity to talk to us. We'll just be able to
22 cover more of a big country.
23 So I would strongly come down on the side
24 of two or three person subcommittees trying to do this
25 in different parts of the country, giving people
156
1 access who can't get to Washington. It's too
2 expensive. They are too sick. Whatever.
3 And I would also like to urge that if we
4 are going to get ready for that, we need one other
5 thing, which is a kind of succinct summary of what
6 people are supposed to be entitled to for clinical
7 care, legally and otherwise.
8 What are they supposed to get? What were
9 they promised? What was supposed to be delivered?
10 That should certainly inform some standard set of
11 questions, whether in a case study format or just --
12 And I had another thought, which is in
13 addition to doing a case study walk-through. If we
14 could, instead of asking people to simply testify to
15 us, sort of hanging out the shingle and saying, "We're
16 here. We've come to your town. Here we are." If we
17 could come up with a list of questions and say we want
18 you to tell us about A, B, and C, that will move it
19 along for us too.
20 I mean, I don't mean to just limit it to
21 what we want to know about, but we certainly could
22 suggest as part of --
23 CHAIRPERSON LASHOF: Their testimony that
24 they address certain issues that --
25 DR. CAPLAN: Their testimony, these are
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1 key themes that we are interested in.
2 CHAIRPERSON LASHOF: Good point. We'll
3 note that.
4 Okay. Any other -- I sense a consensus of
5 the group that we try to get those going in the fall,
6 maybe use September, October --
7 DR. LARSON: But we may be talking about
8 two different things. I mean, you are talking about
9 hearings. I was talking about case -- where you
10 actually look at -- okay, here is where you entered
11 the system, and here's how.
12 CHAIRPERSON LASHOF: Yes.
13 DR. LARSON: And then on X date, Y date,
14 here's what happened, here's the test that occurred.
15 CHAIRPERSON LASHOF: Yes.
16 DR. LARSON: Here's the symptoms. You
17 know, just that kind of a walk-through.
18 DR. BALDESCHWIELER: For a specific
19 person?
20 DR. LARSON: Yes.
21 CHAIRPERSON LASHOF: Yes. Yes. We would
22 identify some specific people. We'll have to stave
23 off the work on the logistics. We could combine that
24 with the small hearings at the same time -- that we
25 are having a small hearing somewhere, have a case
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1 study also from that area, that region, that VA.
2 DR. NISHIMI: I think you have to be --
3 we'll have to be careful about privacy considerations.
4 CHAIRPERSON LASHOF: Privacy.
5 DR. RIOS: I was going to mention that it
6 -- there may be some privacy problems. Plus it also
7 seems like it could be something done by staff. If
8 you get somebody and you find out what their complaint
9 was, where it started, and what happened.
10 I mean, that's just -- sounds like
11 something that staff could work up. I don't know how
12 many cases you want to look at just to see what
13 happened. It doesn't seem like it's something
14 conducive to having hearings on. I don't know.
15 CHAIRPERSON LASHOF: No. I think it was
16 separate from the hearings.
17 DR. LARSON: Two separate issues.
18 CHAIRPERSON LASHOF: That was the thought.
19 DR. LARSON: And in fact --
20 CHAIRPERSON LASHOF: Of this whole --
21 DR. LARSON: I wonder if the hearings is
22 not better served at this point by focus groups. I
23 don't know. I mean, we are talking about three things
24 now.
25 CHAIRPERSON LASHOF: I think they are
159
1 different. They're three different things.
2 DR. LARSON: Right.
3 CHAIRPERSON LASHOF: One would be
4 individual case studies.
5 DR. LARSON: Right.
6 CHAIRPERSON LASHOF: And we'll have to
7 determine -- I think we'll need some staff work to
8 determine how to select those and what the exact
9 specifics. Regional hearings are for those veterans
10 who wish to be heard by this Committee, who have not
11 been able to come here.
12 DR. LARSON: Yes.
13 CHAIRPERSON LASHOF: Focus groups will be
14 an order sample, a more representative sample of Gulf
15 War veterans to explore the issues that have come up
16 as part of the process and the studies. And we will
17 do all three.
18 Is that -- is that the consensus of what
19 I've heard here?
20 DR. LARSON: Right.
21 CHAIRPERSON LASHOF: Okay. Well, to me it
22 sounds like then that by our October meeting we'll be
23 able to get the initial recommendations issues. We
24 would get started on some of the case studies,
25 possibly, and some of the hearings.
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1 The actual focus groups would not be held
2 by then. That's more complicated until we select a
3 firm and identify that. But we could develop the next
4 meeting -- and we'll have to talk about the frequency
5 of meetings -- but the meeting after the October
6 meeting, around the clinical care issues, and focus on
7 clinical care.
8 Maybe that's as far as we ought to go in
9 trying to set priorities until we see where staff are.
10 There's too much that needs to be done and too many
11 unanswered questions.
12 DR. NISHIMI: Yes. I think so.
13 CHAIRPERSON LASHOF: I think --
14 DR. NISHIMI: That's all we are going to
15 get done before the report is due, the six-month. If
16 we had an October meeting and then another one in
17 December or whatever, the report's due in early
18 February, right?
19 CHAIRPERSON LASHOF: Mid-February.
20 DR. NISHIMI: So it'll either be December
21 or January. I don't think we are going to get more
22 than two more meetings in before then. So if we've
23 decided those two are our priorities, we can deal with
24 those before February.
25 CHAIRPERSON LASHOF: Well, that brings us
161
1 to the frequency of meetings. Are we aiming for
2 monthly? Bimonthly? I can see everyone voting at
3 different times. And what's realistic?
4 DR. NISHIMI: I think you also have to
5 think about the fact that you are going to have these
6 smaller group field hearings. So, you know, when you
7 commit to a -- either, you know, every four weeks, six
8 weeks, eight weeks schedule, remember that there will
9 be subgroups of you also taking on the responsibility,
10 you know, at some point in between those meetings of
11 convening for a separate small gathering.
12 DR. TAYLOR: On that note --
13 CHAIRPERSON LASHOF: What is the
14 preference? On that note, what would you like to say?
15 DR. TAYLOR: Bimonthly. Every other
16 month.
17 CHAIRPERSON LASHOF: Every other month?
18 DR. LARSON: Whatever it takes to get the
19 work done.
20 CHAIRPERSON LASHOF: To get the work done.
21 DR. LARSON: Yes.
22 CHAIRPERSON LASHOF: Well, let us see.
23 We've asked you for calendars. Those have been
24 distributed. We'll have a sense by the October
25 meeting. And maybe we'll leave this open to see and
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1 see what we can do in the --
2 DR. CAPLAN: What I'd like to suggest,
3 maybe, is that we could presume that we are going to
4 meet at least bimonthly.
5 CHAIRPERSON LASHOF: Yes.
6 DR. CAPLAN: So we could set those in now.
7 CHAIRPERSON LASHOF: Okay. Well, we won't
8 take this time to set the calendar. But staff will be
9 back in touch with you all.
10 DR. CAPLAN: Well --
11 CHAIRPERSON LASHOF: All of you have in
12 the book a calendar with x's in there already, which
13 are my x's out. Some are wrong. And I've corrected
14 them.
15 DR. BALDESCHWIELER: It's extremely
16 helpful to at least --
17 CHAIRPERSON LASHOF: Yes. I think as many
18 as we can do ahead --
19 DR. BALDESCHWIELER: Schedule ahead --
20 CHAIRPERSON LASHOF: And just say if we
21 could set the bimonthly for the whole year, and then
22 if we need additionals, fit them in and do
23 subcommittees. That would be helpful.
24 Okay. Are there any other --
25 Robyn reminds me that in the environmental
163
1 that includes the depleted uranium issue as well. And
2 -- okay. I am open now for anything else any member
3 of the Committee wants to raise at this point. Issues
4 we've missed. Additions. Suggestions.
5 Andrea?
6 DR. TAYLOR: Yes. Our next meeting I note
7 thus far is the week of October 16th. So then, we
8 don't have the dates yet?
9 DR. NISHIMI: No. Because we don't even
10 have all the responses in. But that was what was sort
11 of looking good. Although I got a few more yesterday.
12 And so maybe now it's toward -- anyway -- some time --
13 DR. RIOS: That's going to be here?
14 DR. NISHIMI: Well, that's for the
15 Committee to decide.
16 CHAIRPERSON LASHOF: Yes. That's one of
17 the questions, is how frequently we meet in
18 Washington. How frequently do you want to come to
19 California? And whether we ever meet somewhere else
20 in between. If we do subcommittee hearings around the
21 country, there's less need for the whole Committee to
22 move west. And you are heavily eastern loaded. But
23 John and I do live in California.
24 DR. KNOX: I think most of the Gulf War
25 veterans did come from the east. I don't want to make
164
1 that too big of a statement. But I think a lot of
2 them were from the East because it was closer.
3 CHAIRPERSON LASHOF: Today, I mean for
4 this hearing, but then there are others from around
5 the country.
6 DR. KNOX: Oh, right. Right.
7 CHAIRPERSON LASHOF: That might want to
8 attend the full meeting as well as be present at the
9 hearing.
10 DR. KNOX: Right.
11 CHAIRPERSON LASHOF: So I think we
12 shouldn't have all of the meetings in Washington. We
13 clearly have to have some in other cities to give
14 other people beside the hearings a chance to actually
15 sit through a full meeting.
16 DR. RIOS: Did you say the -- most of the
17 troops that went to the Gulf War were from the east
18 coast?
19 DR. KNOX: I think a majority of the
20 troops that went into the Gulf War were on this side
21 of the United States. And simply because it was
22 easier to transport them from the east coast than it
23 was from the west coast.
24 DR. RIOS: It may have been -- they may
25 have been stationed on the east coast, but they are
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1 not from the east coast.
2 CHAIRPERSON LASHOF: John?
3 DR. BALDESCHWIELER: I would like to raise
4 what is a complex and confusing issue of economics and
5 ethics. And that is, presumably if this panel and the
6 Administration responds to recommendations to improve
7 the care and the access of this group of veterans --
8 if one is dealing with the zero sum game, that means
9 that somebody else gets less care.
10 That is, if the system is conserved in
11 terms of resources and facilities. I suppose that is
12 not in our charter, but somehow it seems to me utterly
13 essential that one understand just how the dynamics of
14 the system will respond to recommendations that we
15 make.
16 CHAIRPERSON LASHOF: I think that's
17 something that we may want to talk about when we come
18 to final recommendations, as to costs of
19 recommendations and prioritizing them in some way.
20 But final decisions of how governmental resources are
21 allocated remains in the hands of the President and
22 the Congress, through the appropriation processes and
23 many others. But these are issues that I think we'll
24 have to address downstream.
25 The immediate issues for us are our own
166
1 budget, and that we live within that budget. Which
2 may put constraints on how many hearings where, how
3 much travel and so on. And staff is going to have to
4 struggle with that a little bit with me as we --
5 DR. BALDESCHWIELER: But the frequent
6 outcome of recommendations of this sort is a, in a
7 sense, an unfunded mandate. The system is asked to do
8 something. And those resources come from somewhere
9 else. And then you succeed in shifting the problem.
10 But not necessarily making an overall improvement.
11 DR. CUSTIS: Unfunded mandates are very
12 popular. It's an imponderable.
13 CHAIRPERSON LASHOF: It's an imponderable.
14 I'm not sure how fruitful it is for us to discuss that
15 at any length, but --
16 Elaine?
17 DR. LARSON: No. I was just going to
18 suggest that first we need to lay out the issues and
19 see where we are. And then, I agree with you. The
20 final recommendations -- it might be something we need
21 to -- it will be something we will address in terms of
22 prioritization and so forth.
23 In terms of deciding where our meetings
24 are, I am wondering if it might be helpful to first
25 have -- just talk about whether -- where we might,
167
1 what might be logical places to have hearings based on
2 the location of where we might get more information,
3 more vets, and also where we are located around the
4 country.
5 And then maybe a simple way to do it with
6 the Committee is to at least every third meeting, if
7 not every other, reverse coasts or go across and back.
8 I don't know.
9 CHAIRPERSON LASHOF: Well, I -- it's a
10 question of whether that's worth our exploring that
11 more here, or we need staff to do some more work on
12 this --
13 DR. LARSON: That's fine. Yes.
14 CHAIRPERSON LASHOF: And find out where
15 some key spots --
16 DR. LARSON: It sounds fine.
17 CHAIRPERSON LASHOF: -- that we need to be
18 and so on.
19 DR. NISHIMI: Yes. I mean, I think
20 because it wouldn't be very fruitful here for us to --
21 all the data points aren't here. But we also have to
22 have financial considerations, quite frankly, taken
23 into account.
24 CHAIRPERSON LASHOF: It's not only our
25 trouble, it's staff trouble as well.
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1 David?
2 DR. HAMBURG: Joyce, on the process of the
3 near term, it's been pretty easy for me and others
4 today to say the staff will do this and the staff will
5 do that, except we don't have much staff yet.
6 These kinds of operations begin with a
7 desk and a pencil. When you start from ground zero,
8 it's not as if you had an established institution.
9 You turn to the established institution to do a study.
10 You create an institution in a sense, a
11 transitory one to be blown away at the end of next
12 year. But in the meantime, how do you get up and
13 running expeditiously?
14 And in effect, we are piling on
15 suggestions for a non-existent staff to do. I think
16 we need to focus on how we get a staff in place of the
17 right calibre as rapidly as possible.
18 I think one part of that, quite frankly,
19 is an intensive interaction between the chair and the
20 staff director in the next few weeks. A very
21 intensive one. If you had any thoughts of doing
22 anything else, I suspect they'll soon evaporate.
23 But more than that, I believe we ought to
24 volunteer -- I think every member of the Committee
25 would want to be helpful to the extent you want to
169
1 involve us in identifying people or helping to assess
2 or recruit people to join the staff as soon as
3 possible.
4 You might also want to consider some
5 flexibility, some first-rate people who are not
6 available full time might be available half time in
7 the near future, something of that sort. We ought to
8 be open to that.
9 It's more important to get the right sort
10 of people, with the competence and the integrity and
11 so on, than it is to have them in any particular
12 arrangement, in my judgement.
13 In any event, I am volunteering for the
14 Committee to help the Chair to work this out to get
15 the staff up and running as soon as possible.
16 CHAIRPERSON LASHOF: Thank you, David. I
17 appreciate that. And I welcome that help. Robyn and
18 I have been in almost daily contact since the end of
19 June, I guess, around staffing issues. We are -- I
20 think have made amazing progress for how short.
21 But there are a lot of positions unfilled
22 at this point. It might be helpful for Robyn to run
23 down and give you a brief description of the people
24 who are on board and the areas that we are still
25 searching very hard for and elicit you to help.
170
1 Robyn, would you like to do that?
2 Okay.
3 DR. NISHIMI: There's myself, the
4 executive director. We have a deputy director and a
5 counsel, Holly Gwin, who has been doing all of -- most
6 of the logistics for the meeting.
7 There will need to be some type of senior
8 medical advisor. And I believe we have already
9 identified a person who has familiarity with the
10 policy world, military health, veterans' health,
11 clinical issues, bioethics, a lot of experience.
12 A director of communications, obviously,
13 is important. And we are, I think, close to achieving
14 closure on that. The same with the congressional and
15 public affairs coordinator to work with the director
16 of communications.
17 There will be sort of a medical veterans'
18 military ombudsperson that Joyce has previously
19 mentioned. And we have a couple of people in line
20 there.
21 And then we are looking at, you know, what
22 I would call the policy analysts, senior policy
23 analysts, across a range of issues, clinical care, the
24 ones we've been discussing. Clinical care. Research.
25 Hazard and risk assessment. Outreach. Implementation
171
1 of the past recommendations.
2 And they would fill out the analytic
3 staff. And we have identified people for many of
4 those positions. Some of them are still being
5 interviewed. Some of them -- their papers are being
6 processed.
7 And then a couple of research assistants.
8 The administrative staff is pretty much in place,
9 except for probably a contractor to help with the
10 archival material and things like that.
11 DR. LARSON: Did -- were you clear on --
12 or, I'm not clear on what our priorities are -- our
13 priority needs are, based on that?
14 CHAIRPERSON LASHOF: Priority needs, I
15 believe, are in epidemiology and --
16 DR. NISHIMI: Well, in epidemiology we
17 have a strong candidate now identified that we were
18 following up on. On the psychological factors, Dr.
19 Hamburg has, I think, discussed that with Dr. Lashof.
20 CHAIRPERSON LASHOF: He's going to before
21 he leaves today.
22 DR. NISHIMI: Or, he's going to. Clinical
23 care, we have a physician and then another possible
24 part-time consultant physician. But I think it would
25 be also important to look into, as Art indicated, some
172
1 of the allied health professionals, perhaps full time,
2 perhaps not, to assist in going out and evaluating
3 both the DOD and the VA care systems.
4 CHAIRPERSON LASHOF: Did -- wouldn't we
5 feel that we would like to find a nurse who could help
6 us in this area and could look at some of the
7 healthcare and medical care issues? And that's one we
8 haven't identified. And the outreach we have.
9 Otherwise, we are in reasonable shape, actually.
10 We've been hard at work.
11 Okay. Others? Other issues?
12 Suggestions? Things we need to cover before we --
13 (No response.)
14 CHAIRPERSON LASHOF: If not, we did have
15 a request earlier today that there were some veterans
16 who wished to testify yesterday who did not have an
17 opportunity. And I said that if we had time at the
18 end of today's session before we had to adjourn, I
19 would grant them time.
20 If they would identify themselves?
21 Let me take a five minute break and ask
22 anyone who wishes to so testify to come forward and
23 identify themselves to Robyn? You, or?
24 DR. NISHIMI: No. I am looking for --
25 CHAIRPERSON LASHOF: Diane's over there.
173
1 DR. NISHIMI: No. Is Mike Kowalek here?
2 Or is he out front?
3 CHAIRPERSON LASHOF: Okay. Let us take a
4 couple-minute break. And we'll have someone to
5 identify anyone who wishes to testify. And we should
6 be able to wrap up in the next 20 minutes.
7 (Whereupon, the proceedings went off the
8 record at 2:16 p.m. and went back on the
9 record at 2:31 p.m.)
10 CHAIRPERSON LASHOF: I think we'll resume.
11 I was approached this morning and informed that there
12 were some people that wanted to testify. But it does
13 not appear that we've been able to -- we have. Okay.
14 We're waiting to try and see if we have
15 identified -- there is one person who wishes to
16 testify.
17 The name is Diane St. Julian, I believe.
18 Will she come forward now to the mic. We'll be happy
19 to hear her.
20 We may need to lower the mic. They
21 clearly need to lower the mic. for you. We'll do
22 that. Just wait one minute.
23 The floor is yours.
24 MRS. ST. JULIAN: Good afternoon. My name
25 is Diane St. Julian. And I am reading a statement on
174
1 behalf of Jeffrey St. Julian.
2 "Members of the committee, I served
3 my country in the United States Army for
4 over nine years, during which time I have
5 been awarded for outstanding service on
6 numerous occasions.
7 "I was ready and willing to defend,
8 fight, or die for my country just so my
9 family or fellow Americans could have all
10 the rights afforded to them under the
11 Constitution.
12 "During Desert Shield and Desert
13 Storm I was assigned to 25th ID,
14 Schofield, Hawaii. I never deployed to
15 Saudi Arabia.
16 "Nevertheless, my unit was briefed
17 for predeployment and predeployment plans
18 and conducted countless training
19 exercises in preparation for deployment
20 with the main focus on NBC training.
21 "In a series of PALMING exercises -
22 - PALMING is done when a rapid deployment
23 unit reaches a unit that can deploy
24 worldwide within 18 hours, going through
25 a series of checklists, such as updating
175
1 wills, insurance policies, to include
2 receiving shots for diseases that are
3 contrary to that region of the world you
4 are deploying to."
5 "Some time before the war began,
6 the 25th ID was placed in a unit on alert
7 to have the unit ready to deploy and act
8 as an escort to the ground troop
9 commander.
10 "At this time, my unit did prepare
11 for deployment to the Gulf Region, to
12 include taking shots that were to protect
13 us from various diseases and threats in
14 that region.
15 "Most of the shots went unrecorded.
16 I was also involved in a mission to
17 support the unit that did deploy to the
18 25th ID to escort the commander.
19 "The mission involved receiving,
20 cleaning as needed, and turning in
21 equipment. Also during this time, I
22 received several investigations of shots
23 and pills.
24 "I was forced to take one of the
25 shots, and it was Japanese encephalitis,
176
1 and a mysterious malaria pill.
2 "I called the pill mysterious for
3 two reasons: first, because after
4 contacting a medic who remembered the
5 pill, I could not find any record of
6 them; secondly, because after questioning
7 numerous doctors about such a pill, none
8 of them was aware of a malaria pill taken
9 in the fashion we took these.
10 "We were -- the malaria pills
11 finished. The pill was white and one was
12 taken after each meal. I took these
13 pills for 60 days.
14 "In the summer of 1991, I had what
15 I now consider my first unexplained
16 medical symptom. My problems have
17 continued and became more and more
18 frequent.
19 "I was lost when my family started
20 having medical problems and conditions
21 that were very similar to my own. In
22 fact, I was referred to mental health for
23 my symptoms, and on several different
24 occasions.
25 "I finally admitted myself into the
177
1 hospital in December of 1994 because the
2 symptoms I was experiencing were coming
3 so often.
4 "After giving my symptoms to the
5 doctor, I was repeatedly questioned about
6 whether I served in the Persian Gulf
7 during the war.
8 "I answered the question no. I did
9 not serve in the Persian Gulf. I could
10 not understand the connection between my
11 symptoms and the Persian Gulf.
12 "After contacting DOD registry, I
13 found that my symptoms that I had been
14 complaining about for the last couple of
15 years were the same as the Persian War
16 illness.
17 "Colonel Jones of Walter Reed Gulf
18 War Registry wanted me seen there. After
19 being informed of my developing
20 situation, my unit told doctors I was
21 faking my symptoms.
22 "I did not receive another medical
23 treatment for over seven days. When I
24 was discharged from the hospital on the
25 21st of December, after contacting the
178
1 center at my home town, I was placed on
2 medical hold to receive medical testing
3 and treatment at Walter Reed.
4 "I was not allowed to receive any
5 medical treatment. I was counseled that
6 I was not due anything but clinic
7 insulation I was assigned to.
8 "I was escorted everywhere I went.
9 In fact, on Christmas day, I was in the
10 hospital receiving a needed medical
11 surgery which otherwise I could not get
12 on a normal duty day.
13 "The doctor who treated me felt I
14 needed to be seen by specialists for the
15 problems I was having and gave me
16 consultation to have problems looked
17 into.
18 "After going on one of the clinics
19 the next day, I was once again counseled.
20 This time I was counseled and warned that
21 if I attempted to get medical attention
22 again, I would be court martialed.
23 "I was then escorted and taken to a
24 separation physical which found me not
25 qualified for separation. Nevertheless,
179
1 I was escorted to continue clearance and
2 ordered to sign a DD-214.
3 "I did as I was ordered. I have
4 attempted to be seen through the VA, but
5 because I am not medically cleared from
6 the service, I have not been seen there.
7 "In addition, I was told because I
8 didn't serve in the Gulf, I am not a Gulf
9 War Veteran. So I am not qualified to be
10 seen by a VA Gulf clinic.
11 "Furthermore, on each visit to the
12 VA, I was sent to the Pentagon and to
13 DODIG regarding errors in the discharge
14 from service.
15 "For this reason, I requested
16 assistance from Senator Thurmond's
17 office, Congressman Jefferson Williams,
18 Senator Robb's office, Senator Moran's
19 office.
20 "While dealing with Senator
21 Thurmond's office, a DOD investigation
22 was conducted. The military furnished
23 false information in regards to the
24 investigation, such as Sgt. St. Julian
25 did not complete a separation physical,
180
1 so there is no reason to retain him on
2 active duty.
3 "I have provided official
4 documentation in response to these false
5 statements, such as a copy of my official
6 separation physical.
7 "The final response from the
8 military was for me to take it to the
9 Military Board of Corrections. I have
10 contacted every source I know for help,
11 to include the Military Board of
12 Corrections.
13 "The bottom line is that my family
14 and my medical problems are caught up in
15 politics. Who is a Persian Gulf Veteran?
16 Who is isn't? I served my country
17 proudly. I wore my uniform proudly.
18 "I want you to realize I was a
19 career soldier, highly decorated. I
20 wouldn't let anything stand in my way. I
21 have a contract with the United States.
22 And today it's not worth the paper it's
23 written on.
24 "I'm not a veteran because I am not
25 qualified for discharge. I am not a
181
1 soldier because I signed a DD-214 after
2 being ordered to do so. How can these
3 be?
4 "What have I done with the last ten
5 years of my life? Today I have to seek
6 medical help the best way I can. I know
7 that I was not in the war zone.
8 "But I know I was prepared to go
9 and I supported a unit going to and
10 coming from the Gulf. That must count
11 for something.
12 "I don't think that I am being
13 unreasonable to want the rights I was
14 told I would receive if I needed them. I
15 have earned them. Jeffrey St. Julian."
16 CHAIRPERSON LASHOF: Thank you very much.
17 Just for the record, I'd like to clarify that you were
18 reading a statement from --
19 MRS. ST. JULIAN: Jeffrey St. Julian.
20 CHAIRPERSON LASHOF: St. Julian.
21 MRS. ST. JULIAN: Yes.
22 CHAIRPERSON LASHOF: I see. And you are?
23 MRS. ST. JULIAN: Diane St. Julian.
24 CHAIRPERSON LASHOF: And you are Diane St.
25 Julian.
182
1 MRS. ST. JULIAN: Yes.
2 CHAIRPERSON LASHOF: So that you were
3 reading the statement on behalf of your husband?
4 MRS. ST. JULIAN: Yes.
5 CHAIRPERSON LASHOF: I understand that
6 now.
7 MRS. ST. JULIAN: Okay.
8 CHAIRPERSON LASHOF: I wasn't clear on
9 that, and I wanted that clear for the record.
10 MRS. ST. JULIAN: Okay.
11 CHAIRPERSON LASHOF: Thank you very much.
12 MRS. ST. JULIAN: Okay.
13 DR. TAYLOR: One question, Diane?
14 CHAIRPERSON LASHOF: Oh, yes. Questions.
15 DR. TAYLOR: Diane, you said that he
16 received the vaccines? In his statement, he said that
17 he had received a vaccine but never served in the
18 Gulf. So he received some of the similar shots that
19 many of the other veterans --
20 MRS. ST. JULIAN: Yes. He received all
21 the vaccines. He was even loaded on the plane to go,
22 with bags and everything, and then was told to stand
23 down.
24 CHAIRPERSON LASHOF: Are there any other
25 questions.
183
1 (No response.)
2 CHAIRPERSON LASHOF: If not, thank you
3 very much.
4 MRS. ST. JULIAN: Okay. Thank you.
5 CHAIRPERSON LASHOF: I think before we
6 close we had one request from one of the Gulf War
7 Veterans. Denise Nichols would like to make just a
8 few remarks about her reactions to the day and a half,
9 almost two days.
10 MS. NICHOLS: It's awfully low here.
11 CHAIRPERSON LASHOF: Denise, I will ask
12 you to be brief because we must return promptly --
13 MS. NICHOLS: It will be brief.
14 CHAIRPERSON LASHOF: And I do have a few
15 more minor business things to cover.
16 MS. NICHOLS: We want to make a couple of
17 statements. First of all, we appreciate the
18 dedication that you've shown. And you've picked up on
19 some of our concerns. We do hope we have some
20 communication with the staff as you go along.
21 I want to mention that we have had quite
22 a few deaths. And we have different figures. And we
23 hope that if you get those death data that you can
24 help facilitate the release of that so recognition for
25 these soldiers and the troops can be started.
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1 I think they need to be recognized in some
2 way. Col. Kline is one example. And I would like to
3 move that forward so that those families have some
4 recognition. I want to stress again that time is very
5 definitely a factor.
6 A lot of the vets feel like their time is
7 short, that they are dying. And so I hope that even
8 though your final report is not due until quite a ways
9 away, that if you find data that will provide the
10 answers, that you will communicate clearly with the
11 troops.
12 There was one thing that I was taught when
13 I came into the military as an officer. And I am
14 retired now. It was always said if you take care of
15 the troops, they would take care of you. We've done
16 our duty. We would like you to help us find the
17 answers and get them addressed.
18 We hope that you will also consider the
19 base line data that a lot of troops didn't have. Some
20 of us do have base line data from before we went to
21 war, with the physicals. A lot of our records are
22 missing.
23 Some people being reservists guards might
24 be able to provide some of that. And it's never been
25 asked for. But one of the things I've seen is it may
185
1 not be abnormal lab results yet, but they are
2 different from their base line. They have changed
3 over time.
4 And I was always taught as a nurse to look
5 at a base line first. And it may not be abnormal yet.
6 But if it's changing, you need to watch it. And it's
7 an indicator.
8 I want to stress that they have not been
9 doing testing for depleted uranium. And in a
10 sandstorm situation, like we were in over there, with
11 the weather factors and all, that we have great
12 concern for the inhalation, ingestion, of depleted
13 uranium.
14 And we have not had any testing across the
15 board for depleted uranium in our bodies, and heavy
16 metals, and the lead that came out in one of the
17 reports in the past.
18 We also have not had sufficient testing
19 for leishmaniasis and some of the endemic diseases
20 that may be affecting the families and could be
21 addressed quite quickly, I do believe. I think those
22 things that may affect the family we should put on a
23 high priority -- would be our feed in because there's
24 great concern for our family members out there.
25 And in ending this, I would hope that --
186
1 we heard the figures 58,000 on a registry. I went to
2 the Wall last night, stopped by early this morning --
3 58,000 and something names on the Vietnam War. And I
4 hope that we are not looking at -- and delayed an
5 expectant category of people that are looking to be
6 not with us. And I hope that that doesn't happen.
7 That would be a real tragedy for our nation. And
8 thank you for your sincerity. And thank you for
9 addressing some of our concerns from yesterday.
10 CHAIRPERSON LASHOF: Thank you very much.
11 We are about ready to close up. I just
12 have a couple of final things to say to the Committee
13 and then to anyone in the audience who wants to
14 approach anything.
15 Over the next few days we'll be getting
16 out to you follow-ups on some of the issues that we've
17 discussed. Robyn will be back in touch with you about
18 dates and we'll try to resolve some of those.
19 Again, the -- I wanted to make clear to
20 any of the audience who wishes to submit any
21 additional material to our office. That is open
22 throughout the duration of our study which runs to
23 December 1996.
24 I would urge you not to submit anything
25 during the last month or two, but the sooner we get
187
1 additional information from you, the sooner we can
2 address your concerns and look into it.
3 This is not like a Congressional hearing
4 where you only have ten days after the hearing to
5 submit material. Our office will be open to
6 submissions from any veterans or any other concerned
7 people who have information or data.
8 Again, I'll give you the address of that
9 office. That's 1411 K Street, N.W., Suite 1000, and
10 the zip code is 20005-3404.
11 Thank you, Robyn.
12 And if there are any other closing remarks
13 any member of the Committee cares to make?
14 (No response.)
15 CHAIRPERSON LASHOF: If not, I will turn
16 the gavel over to Cathy Woteki, who officially opens
17 and closes our meetings.
18 MS. WOTEKI: And as the designated federal
19 official for the Gulf War Veterans' Illnesses
20 Committee, you are now adjourned.
21 (Whereupon, the Public Meeting of the
22 Presidential Advisory Committee on Gulf War Veterans'
23 Illnesses was adjourned at 2:49 p.m.)
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