


                                                                          1

                            UNITED STATES OF AMERICA


                                   + + + + +

                        PRESIDENTIAL ADVISORY COMMITTEE ON

                                   + + + + +

                          GULF WAR VETERANS' ILLNESSES


                                   + + + + +

                                PUBLIC MEETING

                                   + + + + +


                                    TUESDAY

                                AUGUST 15, 1995

                                   + + + + +

                                WASHINGTON, D.C.


                                   + + + + +

                      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


                                                                         81

     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?


                                                                         83

     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.


                                                                         94

     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


                                                                        106

     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,


                                                                        109

     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?


                                                                        111

     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.


                                                                        115

     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.


                                                                        116

     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.


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     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


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     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.


                                                                        119

     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,


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     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


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     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


                                                                        132

     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 --


                                                                        133

     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.


                                                                        134

     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.


                                                                        135

     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


                                                                        136

     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


                                                                        138

     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.)

    11

    12


    13

    14

    15


    16

    17

    18

    19


    20

    21

    22


    23

    24

    25


                                                                        139

     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


                                                                        142

     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


                                                                        144

     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.


                                                                        146

     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


                                                                        148

     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


                                                                        149

     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.


                                                                        150

     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


                                                                        157

     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


                                                                        158

     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.


                                                                        160

     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


                                                                        162

     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


                                                                        165

     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.


                                                                        168

     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.


                                                                        184

     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.)

    24     

    25
