NOTE: Unedited document
PRESIDENTIAL ADVISORY COMMITTEE
ON
GULF WAR VETERANS' ILLNESSES
September 5, 1997
Holiday Inn
625 First Street
Alexandria, Virginia
PARTICIPANTS:
Committee Members:
Joyce C. Lashof, M.D., Committee Chair
John Baldeschwieler, Ph.D.
Arthur Caplan, Ph.D.
Joseph Cassells, M.D.
Thomas P. Cross
David A. Hamburg, M.D.
Marguerite Knox, M.N., N.N.C., C.C.R.N.
Robyn Nishimi
Rolando Rios
Andrea Kidd Taylor, Dr.P.H.
P R O C E E D I N G S (8:33 a.m.)
DR. LASHOF: We will begin. Our agenda is to walk
ourselves through our final special report. We don't call
this one a final special report, a special letter report.
MS. NISHIMI: No, not a letter.
DR. LASHOF: Okay, it is a special report. We
have to get all this bureaucratic terminology straight,
reviewing, or responding specifically to the charge given to
us by the President when he extended the committee.
As you recall, the charge was to carry out
oversight of further Department of Defense investigations of
any incidents of exposure to chemical or biological weapons,
and to follow up on the implementation of the rather
extensive recommendations that we did make in our final
report in January of 1997.
Staff, I think, have worked very diligently and
very effectively over the last 10 months, in keeping on top
of both the DOD investigations and in keeping on top of the
progress the departments have made in addressing the various
recommendations that we made in that report.
Today we will walk through the draft document that
we have in front of us, which addresses those. I don't
intend to read this document aloud.
I will take it page by page, briefly indicating
what we are discussing, at least, on that page, and ask for
any comments, additions, changes, anything any member of the
committee wishes to say on any aspect.
I will not start with the executive summary. We
will save that until the very end and can discuss how much
we want in that executive summary. Right now it is very
brief.
Page one, then, is merely an introduction. It
sets forth that we were established. It sets forth that we
did a report in January and that this special report is in
response to that charter.
Is there anything else that anyone feels should go
into the introduction before we launch into page two, when
we start right in with the review of the implementation.
MS. NISHIMI: I just want to remind the committee
that recommendations and findings of the special report will
be printed as an appendix. That is why you don't find
continued reference throughout the document to them.
MR. RIOS: There has been some discussion about
maybe adding something into the research.
DR. LASHOF: We will get to it page by page.
MR. RIOS: What I am suggesting as something the
staff might want to discuss is that there may be something
that we want to add insofar as the introduction is
concerned, either a paragraph or a couple of sentences,
having to do with some of the issues that we are going to be
discussing in the research section.
I know that some of the committee members have
felt that perhaps we want to add it in the introduction as
well.
Maybe now is the time to discuss it, or we could
do it when we get into the research section, however you
want to do it.
MS. NISHIMI: I would prefer to march through the
document as it is, section by section. If there are
additional things that need to be put into the introduction,
then revisit it.
MR. RIOS: Then get into that at that point?
MS. NISHIMI: Yes.
MR. RIOS: Okay.
DR. LASHOF: On page 3 we start right in with the
implementation. We discuss the fact that the plan is given.
Is there anything that struck anybody on page 3 that they
want to comment on?
It is, again, sort of an overall introductory
statement in the weight of the implementation.
We then move right into the specific aspects. The
first one is the outreach. We recognize the progress DOD
has made in outreach and the VA.
We recognize the activities of Jesse Brown in
going out and meeting with Gulf members. So, anything there
that strikes anyone or anything that was omitted?
We describe the clinical working groups workshops
that we have heard about. We discuss some of the risk
communication efforts that have been made.
MS. NISHIMI: You are up to 5 now?
DR. LASHOF: Yes, I am up to page 5. We take
cognizance of the fact that the deployment of U.S. forces to
Bosnia gave them an opportunity to test some of our pre-
deployment and in-theater risk communication.
Are there any additions, corrections, concerns on
page 5?
MS. KNOX: Do we want to add anything about their
response to the tick-borne encephalitis and their informed
consent here, or do we want to make?
MS. NISHIMI: That is covered under the use of the
investigational products.
DR. LASHOF: It does come up.
MS. NISHIMI: It is not really outreach, I don't
think.
DR. LASHOF: When we come to it there, if you
think we need to say more about it than we do, we will come
back to it. Let us move on to page 6.
We come to the medical and clinical issues.
MR. CROSS: At the top of the page there, we talk
about comprehensive risk, communication program. It says
the effort should receive heightened priority.
Do we want to put some kind of a deadline on that
or a time frame?
MS. NISHIMI: Joe, is it your assessment that you
could do that?
MR. CASSELLS: It is possible to do that. The
original response to the recommendations when we made them
was to have that plan in place by the first of May of this
year. Of course, that slipped.
If the committee wished to set a date, it could.
It seems to me the heightened priority would accomplish the
same thing.
MR. CROSS: Even a time frame. If you just read
it quickly, it leaves it open ended.
DR. LASHOF: I think that is a fair point. I
mean, we asked for May -- they said they were going to do
May. They missed that date. We are now up to September.
Do we want to say, should receive heightened
priority and should be completed before the end of this
year?
MR. CASSELLS: Or by the end of this year?
MR. CROSS: Would you want to list the original
projected completion date of May of 1997?
MS. NISHIMI: We do.
DR. LASHOF: Did we have it earlier on a previous
page?
MS. NISHIMI: When we discussed the whole program,
just before the recommendation.
DR. LASHOF: Okay, medical and clinical issues.
We note with approval the government's plan for implementing
the recommendations in the interim report and the provision
of care.
We heard some yesterday about the efforts in
primary care and in case management. They are moving in
that direction.
You will note in your draft that on line 19 and 20
there is a parenthetic update with additional information
from September briefing, as appropriate, would be added.
Does anyone on the staff want to comment on what
they think, from what we have heard yesterday, that they
expect to add at this point?
MR. CASSELLS: I think based on testimony
yesterday and answers to some of the questions on the part
of the staff and the committee, we might want to address
ourselves to the case management strategy that the VA is now
undertaking and relate that to the problem of Gulf War
veterans and their access to medical care.
This is particularly since we have noted in the
past the problems with follow-up care.
DR. LASHOF: Yes, I think it would be worth adding
something to that effect.
MR. RIOS: What about the idea of maybe -- I don't
know if it is in this section, but someplace making it
perfectly clear what now appears to be the government's
position on how to take care of all -- what was it?
One of the gentlemen who testified yesterday said
that this is the government policy.
MR. CASSELLS: That was Dr. Rostker's statement in
the afternoon. I am not comfortable that Dr. Rostker could
speak for the Veterans Administration.
MS. KNOX: I think Fran Murphy stated the same
thing, though, in the morning session.
MR. RIOS: What is the policy of the government,
then?
MR. CASSELLS: I think we can make a statement as
to what the policy is, but I would not want to rely
specifically on the words used yesterday afternoon.
MR. RIOS: Maybe something just to clear that up.
MR. CASSELLS: Yes, we can do that.
DR. LASHOF: Anything else on page 6?
MS. NISHIMI: Before we move off page 6, do you
want to address the issue that Joe raised, which is the case
management primary care issue or not?
DR. LASHOF: I think it would be worthwhile to
note with satisfaction or commend the efforts, to proceed
with case management and primary care, and urge that
priority be given to assure that every ill Gulf War veteran
have a primary care or case manager to coordinate or oversee
their care.
I think that is such an important issue to a
patient whose illness is not clear cut, and whose treatment
isn't clear cut, that they get that kind of care.
I think that has been one of the problems for VA.
I think we have understood it. They said they are moving,
they are up to date on that, and their goal is to get 100
percent under it.
I think we should make comment that that is a goal
and that we urge that that be accomplished. Okay, anything
else on 6? Okay, on page 7.
MS. NISHIMI: Seven begins the breakout within the
medical and clinical issues section. Generically, we
address the clinical issues. As you notice from the draft,
we culled out two specific areas, medical surveillance and
then the use of investigational products.
This is still under the medical and clinical
issues, but they were new issues -- they were issues that we
felt deserved fuller treatment in this section.
DR. LASHOF: I think the medical surveillance, of
course, is one of our forward-looking things. If you
remember, in our initial charge to our initial efforts, one
was to have a forward look, not only to analyze what had
gone on in the Gulf, but make recommendations as to what the
future should do.
In medical surveillance, that is one where we have
taken a forward look. We summarize here the DOD finalizing
a directive on medical surveillance policy for deployments,
and we identify what the directive requires.
I think that is fairly thoroughly presented and it
goes on to the top of page 8. After presenting that, we
basically say we approve of this thrust, but note that there
were some problems in Bosnia, despite that.
Let us stop for a minute there and see if there is
anything that should be added.
MR. CROSS: It says DOD is to publish that
directive in September. Do we know if that is going to
happen?
MR. CASSELLS: Yes, I fully expect that to happen.
The instruction actually to implement this has already been
signed. Usually it occurs after the directive being signed.
We expect the directive to be signed on time in
this month.
DR. LASHOF: We note then, as I mentioned, on page
8 the special difficulties. We reference the GAO report and
then we just have a note on the vaccine, that we discuss
that matter later in this document. So, we will come back
to that aspect.
Is there anything anyone else sees on page 8 that
they want to comment on, add, subtract?
On page 9, we go ahead and make a recommendation
to DOD about placing priority on the pre- and post-
deployment medical surveillance.
Does anybody have any difficulties with anything
in that recommendation?
I will pause whenever we get to a recommendation
and give you a chance to look at it before we pass on.
The next item, then, is on the use of
investigational drugs. Here we go back and point out that
during the Gulf we had pure distigmine bromine and botulinum
toxoid vaccine, and that they were investigational.
We review the problem of the FDA interim final
rule and the waiver, and we review that information, and the
fact that the committee was concerned two-fold, that the
status of the FDA's reaction related to the rule and DOD's
medical record keeping in theater. We found that both
needed improvement.
We then go ahead and discuss the status of the
interim rule. As you know, we have been pushing FDA over
the past 18 months on this issue.
We summarized that on page 10. Then we note that
in July, in the testimony before the committee, the FDA did
identify for the first time in seven years the specific
steps and the appropriate time frame to address the issue.
Then we review the steps they have taken. We
conclude that despite some dissatisfaction before, we now
feel that they are acting appropriately and adequately
responding. We make a recommendation.
MS. NISHIMI: The recommendation basically goes to
the issue of continued forward progress. In this case we do
make a specific recommendation the staff feels would be
adequate for rule-making purposes for FDA to make decisions
about this.
They were somewhat imprecise in how long it would
take them to complete their plan they laid out in Buffalo.
We didn't want imprecise to turn into seven more years.
MS. KNOX: Was this date consistent with what they
had told us? I know they had several things they were going
to do, but did that give them time to do that?
MS. NISHIMI: They had landmarks sort of through
the end of the year, and then it was kind of we will see.
So, we felt that a year from now, or nine months from the
end of their plan was adequate. Would that be a fair
assessment, Joe?
MR. CASSELLS: I think it is quite adequate,
myself.
MS. PORTER: They indicated that they might need
to have a conference, depending on the nature of the public
comment that came in on the request for comment. That would
take up more time.
That is over a year from now. That seems to be a
generous time frame in which to complete this.
DR. LASHOF: I agree. I have reviewed their
proposal, and if they don't need the conference, they should
certainly beat this by a considerable amount.
If they do have that much comment and have a
conference, this allows that time. All right, any other
comments on page 11?
We then move on to the sticky problem of medical
record keeping and investigational products during
deployments. Any comment on the problems there? They have
acknowledged them.
Now this is where we do bring up vaccine; right?
MS. PORTER: Right. This entire section is really
as a result of testimony that came to light in Buffalo on
the tick-borne encephalitis vaccine investigational new drug
application, the study that was ongoing in Bosnia.
DR. LASHOF: I want you to take a look at lines 14
through 19 and see whether that captures what we need to say
on this and whether anyone feels they need to say more.
MS. PORTER: There was some discussion among the
staff about the use of the word abysmal.
MS. KNOX: I appreciate that word.
DR. LASHOF: You make a point that that is
unrelated to the waiver of informed consent because they
didn't need it.
MS. NISHIMI: They didn't seek a waiver. This is
just performance in the conduct of an investigational new
drug application.
DR. LASHOF: Do you remember the testimony we
heard from FDA on this? Okay, we go on, after using the
term abysmal failure. We then go on and describe what the
problem was.
That continues up through the top of page 13. In
fact, we go on through page 13 discussing the capabilities
for evaluating investigational products during deployments.
It is a difficult thing to do, I think.
MS. NISHIMI: I would like to call the committee's
attention to the bottom of the page, lines 22, 23 and 24,
which was one of the issues that Mr. Cross raised about
informed consent generally, and whether the committee is
comfortable with that language. Does that work for you,
Tom?
MR. CROSS: Yes, that is fine.
DR. LASHOF: Go to top of page 14. We comment
further on this area and then come up with a recommendation,
recommending that they seek independent evaluations of their
policies and practices.
MS. NISHIMI: If you recall, General Parker had
indicated at the Buffalo meeting that they were forming an
internal task force or working group to look at the clinical
trials during deployment issue.
The staff view was as presented here, that they
should seek an independent evaluation. Is there a problem?
DR. LASHOF: Any problems with that, any
additions? Art, do you have anything to add to our
discussion here?
DR. CAPLAN: No.
DR. LASHOF: We continue on now to discuss the
review. We noted that in the interim report we commented on
the major epi studies being well designed and appropriate.
We made further recommendations of other studies.
In the final report we said they had been responsive to the
recommendations of our interim report but the problem
remained in a couple of areas, and we made new
recommendations there.
That continues on to the top of 15. In
particular, we note the most recent round of competition for
new research proposals. We talk about the feasibility of
the epi studies.
MR. CROSS: In light of the VA presentation
yesterday, are all these figures still accurate, or does
that need to be reviewed?
MS. NISHIMI: No, they are accurate. Staff was
pre-briefed to get the numbers.
DR. LASHOF: Okay, lines 10 to 18, we comment on
the amount of money that has been allocated to the different
-- that is what you were asking about, Tom, are those
numbers correct.
Is there anything anyone wants to say further
about this research which has been, I think, quite
responsive to our recommendations that we gave in our
January report.
MS. KNOX: I would like to add a statement. Maybe
in line 8 -- this is what I wrote out last night -- because
the amount of data from either humans or animals on low
level exposures are minimal, it is our belief that the
above-described research addresses the inconclusiveness or
unlikeliness that we identified in our final report of
January of 1997.
It is hoped that the research may clarify the
conundrums surrounding Gulf War veterans illnesses. I think
that would fit nicely after line 8 on page 15.
DR. LASHOF: Either there or consider whether it
would be a better fit after line 18. At line 8 we have
outlined what we recommended. From lines 10 to 18 we
outline what they are funding as a result.
MS. KNOX: Either one.
MS. NISHIMI: Eighteen would probably be the one.
I can take it from the transcript.
DR. LASHOF: As you know, you will have an
opportunity to comment on this, the redraft.
MS. NISHIMI: What we will do here is incorporate
the comments using the red line function, so that you see
where the change was made, and then ask you to return it to
us in a quick turn around.
MR. RIOS: Maybe this isn't the time to mention
this, but I know some of the members were concerned about
the initial report using the term unlikely insofar as the
connection between the low level exposures and the long term
effects.
I am just wondering if this is something -- the
staff may want to consider mentioning something in general,
either to clarify that here or in the introductory part of
this second report.
DR. LASHOF: I thought we handled that in the
January report by pointing out that there were uncertainties
and that the research should address those uncertainties.
I thought what Marguerite just read addressed
that.
MS. KNOX: Do you want me to read it again?
DR. LASHOF: Yes.
MR. RIOS: I thought Marguerite addressed it very
effectively. Read it again.
MS. KNOX: It says, because the amount of data
from either human or animal research on low level exposures
is minimal, it is our belief that the above-described
research may address the inconclusiveness or unlikeliness
that we identified in our final report of January 1997. It
is our hope that this research may clarify the conundrums
surrounding Gulf War veterans illnesses.
DR. TAYLOR: I really like that. The only point I
think Rolando is trying to make is that maybe somewhere
else, that in the preamble something similar to that is
mentioned.
MR. RIOS: I am just suggesting that is something
that perhaps you might want to consider in the introduction
as well.
MS. NISHIMI: Yes, I would argue that the
introduction should just lay out who we are, that a similar
type of statement be put in the summary.
MR. RIOS: The summary would be good, and you may
want to run that by --
MS. NISHIMI: The committee will get the entire
draft.
DR. LASHOF: You will get the whole draft. You
will have a chance to have that run by you, I guarantee.
MS. KNOX: I guess I would just be interested, is
there anyone now who has any dissention with that, with
adding that.
DR. LASHOF: Adding what?
MS. KNOX: Adding the statement. Is there anyone
in disagreement?
DR. LASHOF: The statement you just read at this
point.
MS. KNOX: Right.
DR. TAYLOR: No, I think it is good.
DR. LASHOF: I gather everyone is satisfied with
that. Whether we feel it will fit elsewhere as well, we
will have to wait and see. I won't commit myself to that at
this point.
DR. BALDESCHWIELER: I think one do make some
repair to the actual structure of the sentence and the
words.
MS. NISHIMI: They have it on the transcript. We
will be able to work on it.
DR. LASHOF: Anything else on page 15?
MR. CROSS: Yesterday I had made a note that there
were no respondents to research dollars on epidemiology
feasibility studies.
DR. LASHOF: That was on just the epidemiologic
feasibility study of carrying out epidemiology of the
veterans who were at Khamisiyah.
The other epi studies are ongoing and are
excellent ones. It is just, can you really identify those
who were close in at Khamisiyah, that you could assume were
exposed. Is there a feasible way to identify that group and
carry out epidemiological studies.
As I understand it -- staff, correct me if I am
wrong -- what we heard yesterday is that they solicited
proposals for that. They got none. In the absence of
getting it, they then went back to the medical follow up
agency that is based at the Academy of Sciences, part of the
Institute of Medicine now, I believe, and asked them to
submit a feasibility study.
I think that is quite appropriate. They will
either come up with yes, it is feasible, or it is not. If
it is feasible, then they will proceed to put out an RFP for
people to do the study, outlining the elements that they are
supposed to have in it.
Similar things were done with Agent Orange, to try
to get the best study possible.
MR. CROSS: I don't know if you want to mention
that, that they are taking steps to do that.
MS. NISHIMI: So, mention that they didn't get any
and this is what they did to address that. Sure.
MR. CROSS: Don't get me wrong. I am comfortable
with how they are proceeding.
DR. LASHOF: Page 16. We proceed about discussing
the fact that there was competition and external peer review
and how essential that is to good work.
We heard yesterday that there was an awarding of
something -- did we get the exact amount of money awarded
yesterday?
MS. NISHIMI: Outside the broad agency
announcement.
DR. LASHOF: There was an award outside the broad
agency announcement.
MS. NISHIMI: There has been a total of $6.5
million, $3.4 million to Dr. Hyman at the directive of the
Congress. That was an earmark and separately appropriated
funds were provided for that.
DR. LASHOF: Let me stop you there and point out,
I asked about that also yesterday. That money had been
appropriated a number of years ago, had not been released
because there was not an institutional review board approval
for the studies he wanted done.
We were now informed that there is an
institutional review board approval -- two of them. Now the
department felt that they could release the money. I think
that is appropriate and required under the legislation.
There is no need to question that.
MS. NISHIMI: Then there is $3.1 million across
two projects, about $100,000 is my understanding, looking at
the question of mycoplasma as the committee heard about
yesterday.
Then as Dr. Rostker mentioned yesterday, funds
appropriated to Dr. Haley, not under the VAA.
DR. LASHOF: My assessment from what we heard
yesterday -- I would like to know if the committee as a
whole agrees -- that the funding for the mycoplasma does not
fall under research and is an appropriate sole source effort
to confirm and train people on the use of this new
technique, and determine whether that new technique is, in
effect, an appropriate technique to be utilized.
Since he is the developer of the technique, this
would be a logical sole source, non-research use of funds.
MS. NISHIMI: It wasn't just to Dr. Nicholson. It
was to other independent labs.
MR. CASSELLS: Yes, Walter Reed and other labs.
DR. LASHOF: Yes, but to work on that technique
that he had developed.
MR. CASSELLS: That reduces the total figure of
$100,000 to him.
DR. LASHOF: The other part, we were told -- and
here is where I have to admit there seemed to me difficulty
in this question of peer review, or some statements
concerning the fact that it was done without peer review of
the -- the previous proposals had been peer reviewed.
They took out of a bigger proposal those parts
that they thought the peer review had approved. I don't
know how you do that. I found that very confusing
testimony.
So, I think our reiterating the fact that research
should be peer reviewed is important. So, I want you to
take another look at the bullet there and see if you want to
say anything more.
DR. CAPLAN: I have two things that I might want
to say about that section. On line 10, I guess, in the
recommendation with respect to the process to assure that
the highest quality science is funded, I would like to see
some language -- I don't have it in my head -- that it is
not just that the highest quality science is funded, but
that it is able to find credibility because it has gotten
through peer review.
It is just look it is done and people can accept
it or quarrel with it, but it affects the way it is
perceived.
I think we saw that happen with some of the
controversy around some of the stuff that has been supported
that may or may not be within the strict bounds of what has
been peer reviewed.
So, somewhere up there, to assure credibility.
There is nothing worse than getting into a fight after the
fact on a non-straightforward peer reviewed thing of what do
we make of this. That undercuts trust. So, we are back
into that problem again.
I think the other comment I would make is on the
18 to 20 lines. I am not happy with the sentence here. It
says, funding on a non-competitive basis to address narrow
scientific questions that could appear suddenly.
I have this image of things jumping off sides of
streets as questions. The idea that I would look at here is
that it is fine to support pilot inquiries or preliminary
inquiries, and we want to be flexible about that. We
understand that.
Then, we should be moving quickly toward
competitive peer review, et cetera. So, it is just
sharpening that up. I think what they want to get is
flexibility for the preliminary, the new thing, the I got a
big idea, I want to move it along.
MS. NISHIMI: Demonstration project type thing.
DR. CAPLAN: Yes.
DR. LASHOF: I also thought that it might be worth
putting in something sort of along that line, that I had
thoughts about, not precluding calling for proposals to
address specific issues, or even, under some circumstances,
sole source solicitation, sort of the kind of thing that was
done with Nicholson.
Add that peer review of proposed research should
not be abridged. You can call for sole source. You can
have it targeted to address a specific issue. But the
actual proposed research should be peer reviewed.
MR. CASSELLS: That is in fact what they are doing
with the medical follow up agency proposal with regard to
Khamisiyah.
DR. LASHOF: That is right. That is a typical
example of that. I think taking recognition of that, what
we are saying here doesn't preclude that, would be very
helpful.
MS. NISHIMI: Right, I think we know how to
proceed.
DR. LASHOF: Anything else anybody wants to say at
that point? Okay, then let us move on to coordination. The
activities of the coordinating board we take note of. We
take note of the Presidential Review Directive. We feel
that they are addressing that recommendation well.
Any additions, corrections or changes to that
aspect?
DR. TAYLOR: I think we have to at least recognize
that they responded quite well to our recommendations on
research.
MS. NISHIMI: I noticed that was missing, the
generic, we commend the department. I actually had made
that notation. We made that in the other major section. I
am glad you caught that.
DR. LASHOF: Thank you. Now we move on to the
oversight of chemical and biological weapons investigations,
which has been an ongoing problem between us and DOD.
We begin by just the introduction to that, saying
what is the President's Executive Order and what the
supplemental letter report showed what we said on that in
our supplemental report.
We point out that we were going to emphasize three
broad areas that surround it here, the first of which are
the technologies. Well, the three areas we are going to do
are the technologies, the doctrine and the investigation
process.
On page 18 we proceed to get into the discussion
of the technology and where we stand on it.
DR. BALDESCHWIELER: On line 18?
MS. NISHIMI: There was a separate kind of kit for
the water. The 256 A1 is mentioned earlier.
DR. LASHOF: Line 15 talks about the 256 A1.
MR. TURNER: 256 is an error. It is 256 A1 for
the water.
DR. LASHOF: Also, just a section that really just
describes the technology and we review what we recommended
in the interim report.
We talk again about our concerns and on the top of
page 20 we come up with a recommendation.
DR. CAPLAN: I have a comment on that
recommendation. I found myself wanting us to say somewhere
in that recommendation that part of what that group that we
are calling for should do is not just assess the capacity,
but examine the procurement process by which deficient
monitoring and equipment wound up in the Gulf.
I would like to see a little more look back about
how it came to be that things were so easily thrown off by
the conditions that they encountered, in terms of having
modern equipment.
MR. BROWN: I think this is a group point. I
think even if this group that is described in this
recommendation were put together, and looking at the best
technology that the world could put together, that really,
from what we have heard the last days, wouldn't necessarily
be sufficient to assure that it was implemented properly.
DR. CAPLAN: In other words, what I would like to
see them do is -- and this may be hard, we may get the group
that bought the original set of stuff -- but if we are going
to look back, I would like to know, not that they tried to
invent what didn't exist, but that they made clear to the
veterans how it was that they could be sent into the
battlefield theater with assurances of accuracy in detection
that weren't possible.
I am not going to ask them to invent what can't be
invented, but I do want to know why promises about the
sensitivity and specificity of this equipment, given its
cost, were not accurate.
That is a matter of trust. We have got people out
there saying, I detected this, my vehicle detected that,
nobody believes me.
Now the response might be, no, you are wrong, the
equipment is no good. How do we get there?
MR. BROWN: I think many people have reacted that
way. You get the impression, listening to the description
of how this equipment worked from representatives of the
Department of Defense, that it was pretty awful.
MS. NISHIMI: I think we can handle that look back
so that we can do better. Then we will insert that.
DR. BALDESCHWIELER: I think there is a useful set
of lessons that could be learned that should be incorporated
into the report.
DR. CAPLAN: John and I were talking last night.
You reminded me -- if you let me steal this thunder a little
bit -- just this notion of looking to make sure that we
think it is a bad idea to blow up ordinance that is
unmarked.
I mean, part of that should be to -- part of that
is the procurement process.
MS. NISHIMI: I would put that more toward
doctrine.
DR. CAPLAN: Maybe that doesn't fit here.
MR. BROWN: We deliberately divided this into
technologies and doctrine and we identified problems in both
areas.
DR. BALDESCHWIELER: There is a technology issue,
I think, that is associated with unmarked munitions as well.
I think there are ways of determining what is
inside fairly simply.
MS. NISHIMI: I think the staff knows at least
where to take this and then we can run it through the
committee.
DR. LASHOF: Maybe John and Art can talk further
about specific technologies and what your thinking is on
this, John. We would appreciate that.
Then we move on into doctrine. Here we are
talking about the kinds of issues you just raised.
MS. NISHIMI: We can make Art's point about the
demolition activities.
DR. LASHOF: We then pick up the doctrine that we
discuss in detail, or at some level, as the in theater
documentation and records management.
We identify things like, that they weren't
required to keep the fox tapes. Then we comment on the fox
vehicle operation, detection and confirmation. Then we
point out that some of the doctrine for confirming is almost
impossible on a battlefield.
The idea that before we believe anything that fox
says, we have to stop for 20 minutes and so on, leaves us
not in a very logical position, and we make that point, I
think, quite clearly.
Then we go ahead and comment on that current
doctrine addresses only exposures at higher levels, and that
we need to address the question of detection of low level
exposures.
We make one recommendation concerning doctrine, to
address all the issues that we have just raised. Does
anyone have anything they want to add, subtract, et cetera,
to the recommendation there?
MS. KNOX: Help me understand something on page
21, lines 1 through 8, where it talks about the fox
vehicles.
In that last sentence where it says that,
moreover, doctrine is clear that unless a full spectrum
analysis is conducted, detection should be dismissed for
lack of confirmation.
We are disagreeing with that; is that correct?
MS. NISHIMI: Yes.
MS. KNOX: I don't know that that is clear, that
we disagree.
MS. NISHIMI: Okay. So, something along the line
such as, the series of events was impossible to follow.
DR. LASHOF: Don't we have, at the top of 22, we
say, in the midst of combat, during the marine breaching,
such a series of events was impossible to follow. Doctrine
was incompatible with the battlefield use of the fox vehicle
detectors.
MS. KNOX: Yes. I just think that last sentence
rebuts what we said at the top.
MS. NISHIMI: What I could do is actually move
that down to the bottom.
MS. KNOX: That is what I am thinking.
MS. NISHIMI: Then I don't have to repeat it.
DR. LASHOF: Thank you. Now we address the
question of the investigations, which has been a more sore
point.
We summarize briefly that in our final report we
call for openness in oversight activities and independence.
MS. NISHIMI: That became us.
DR. LASHOF: That became us. We then go on to
talk about how they have expanded significantly their
resources to address those.
You have been hearing for several meetings now the
narratives they are preparing, their efforts to be more
open. We comment on the modeling.
We take up this question of who gets notified of
what, and we make a recommendation along that line, pointing
out that it is important to notify people who think that
they were under the plume, that they were not under the
plume, as well as telling people who were under the plume.
MR. RIOS: Would it make sense at this point --
again, I don't know whether it should go here or maybe in
the summary, to clarify what the government policy is.
Joe, do we understand now that the government
policy is that if you are sick and you served in the Gulf
War, there is a presumption that your illness is due to
possible exposure?
MR. CASSELLS: They don't make that presumption.
They don't rule it out. The eligibility for access to care
is not dependent on anything other than having been present.
MR. RIOS: Is that something that vets are
notified about?
MR. CASSELLS: It seems to me we would address
that in the earlier issue, where we talked about what the
current government policy is relative to Gulf War veterans.
MR. RIOS: There has been no change, then?
MR. CASSELLS: There was a change in the window
for access from two years to 10 years.
MS. NISHIMI: We made note of this.
DR. LASHOF: That is under medical clinical. Here
we are talking about notifying you, whether you might have
been exposed or whether you would have been unlikely to have
been exposed.
MR. RIOS: Does it make sense to notify them,
insofar as what the policy is, the government policy?
DR. LASHOF: That should be addressed in outreach.
The staff might go back and take a look at whether the
outreach adequately addresses that question of whether all
the Gulf War veterans know that they are eligible for 10
years.
DR. CAPLAN: It may be, if I can piggy back onto
just what Rolando is asking, whenever a communication goes
out from the Department of Defense on plumes or anything
else, it might be appropriate in that communication to tell
them what their eligibility is, regardless of whether they
were standing under the plume or not, if they are sick.
MS. NISHIMI: Those do. They do.
DR. CAPLAN: I am just sort of saying, keep doing
it.
MS. NISHIMI: They do.
MR. CASSELLS: Dr. Murphy has just corrected me on
one point. The eligibility for access to VA medical care is
not restricted to the 10-year window. That is only related
to compensation.
DR. TAYLOR: It is ongoing.
DR. CAPLAN: If you could just repeat it again.
Whenever you talk to vets, tell them.
MS. NISHIMI: They do.
MR. RIOS: My concern is that sometimes I get the
feeling that the veterans are not completely aware as to
what the government policy is now.
MS. NISHIMI: That is why we believe that the
notification should be expanded. That is what this
recommendation goes to. Then they do get told what the
current policy is.
DR. LASHOF: Okay, anything else on this aspect?
Now we come to the question that you have heard us belabor
yesterday and previous times about objective standards.
I think it has been staff's view, as they have
expressed here, and certainly the committee's view as we
have listened that things like best evidence, preponderance
of evidence, which have changed from common sense, still
leave us fairly subjective.
MS. KNOX: Let me ask a question about that
notification process the DOD does. How are we evaluating
that indeed those people who were in those units are getting
that letter? Are we checking on that in any way? Are we
evaluating that process?
MS. NISHIMI: DOD, as part of its process,
updates, I think weekly, what the status is of the X
thousands of letters that have gone out, how many have come
back, how many now they have been able to recontact.
Yes, you can tell how many went out and how many
have come back due to insufficient addresses and how many
they have been able to recontact.
My assessment is, in following the numbers, that
it is well within, if not better, frankly, as well as
delivery as measured by what you get back, from what one
would expect for a mailing of that size.
DR. LASHOF: Are we ready to move on into this
area of objective standards, then?
I wonder whether, in the preamble before we get to
our objective standard, we want to make -- I am not sure
whether it fits there or later -- that they are putting out
narrative reports.
We might not say how long it takes to get
narrative reports, but have we taken recognition of the fact
that they are trying to put out narrative reports and, in
those reports, present the data on which they base their
conclusions, even if they have not given objective standards
to tell us how they reached their conclusion?
MS. NISHIMI: I see what the deal is. We
mentioned the standard without measuring how they are
reaching the standard through the case narrative. We could
add intro text to that.
DR. LASHOF: Yes, something to explain the case
narrative approach and why they feel that is addressing the
openness and so on.
Then the actual recommendation we make about that
starts on line 20 on page 25 and goes on over to the top of
26. Take a couple of minutes and let you all read it once
more, in view of all the discussion yesterday, and tell me
whether you --
DR. CAPLAN: One thing I think we have to be
careful about here, just watching language closely, since
this one is a language fight, we talk in this section about
objective standard and objective criteria.
Robin just put on the table the need to capture
process as part of what this is. I think what we are
talking about is an objective standard that consists of
verifiable criteria and process.
That is really what we are looking for, what is
the criteria and the process. There are three witnesses,
there is the taking of testimony.
So, what I would like to see us do is, if we keep
saying objective standard they keep rebelling and saying,
well, there is no yes/no.
I think what we want is verifiable criteria plus
process. So, it is saying, that is what we want to see is,
you lay those out. Then we will know how you get to the
magic moment of common sense judgement on a case narrative.
MS. NISHIMI: What I tried to do with process is
the next section, which was bias and fact finding and
analysis.
Perhaps what should happen is that should flip
first and then proceed to standards. Is that what I hear?
DR. CAPLAN: It is almost whatever we say in here
in the recommendation and the lines that go before, we seek
an objective standard. That consists of verifiable criteria
and a different kind of process determination. You put it
there all the time.
MS. NISHIMI: I think we can capture that and then
reverse the --
DR. LASHOF: I think that is a good point. You
really do need to reverse the order and discuss fact finding
and bias and then put the recommendation at the end of that
part of the discussion.
MS. NISHIMI: Then that actually captures the case
narrative because that is discussed here. That makes great
sense. Thank you.
DR. LASHOF: In fact, the whole section here.
MS. NISHIMI: Organizationally, it fits quite
nicely.
DR. LASHOF: Then we get down at the bottom of
page 26, which of course we all talked about earlier
highlighting three examples to illustrate our concern.
I found a little confusion between the three
examples and the three aspects that gave us concern. I
think what we want -- you might even reverse that sentencing
and say the committee is concerned about DOD's
predisposition to -- and then list those three things.
Then say, we cite three examples to illustrate
this concern, or these concerns.
MS. NISHIMI: I could set down the examples in
bullets, too.
DR. LASHOF: Then the examples could be bullets.
So, here are the things we find deficient and here are
examples that support that deficiency.
That discussion then, and the examples, go on
through page 26 and 27, and on to page 28. Let me stop for
a few minutes and let you all look at that part and tell me
whether you are all satisfied with where that stands.
I stop here to give you time to look at that again
because it is an important aspect in reaching one of our
major recommendations.
MS. KNOX: I just want to commend staff on those
paragraphs. I think they are excellent, just the discussion
about DOD's reluctance to admit there were chemicals in
theater for six years. That whole process, she did a very
good job of that.
MS. NISHIMI: Thank you.
DR. LASHOF: Thank you. I concur entirely. That
leads us, then, on page 29, to a major recommendation,
asking the government to -- first, to ask the international
security council to develop a plan, whether that should be
the security council, or to just ask the President or the
White House.
MS. NISHIMI: That would probably be more
appropriate, that the White House should.
DR. TAYLOR: Then give some examples?
DR. LASHOF: I think it is probably better to let
the White House decide, whether it is science and technology
or where. I find the structure of the White House too
complex to say who should do what over there.
MS. KNOX: I think there are several places in
here where we recommend a certain office to look at things.
Maybe we should delete those recommendations and just allow
the White House or the Executive Branch to make that
decision.
MS. NISHIMI: Some of them are things that are
already being done at places, though. It makes sense to
target those directly. This is sort of something new,
develop a new plan.
Since the recommendation essentially says there
needs to be a step back, we had no one to step back within
the agencies on this particular one. We could take a look
at all the other recommendations and see if they fit that.
DR. LASHOF: That would also mean taking a look at
lines 14, 15 and 16 here, which we said in short, we give
four examples. Do we want to give the four examples or do
we want to leave that at the White House.
Robin, do you have any feelings about, on lines
14, 15 and 16?
MS. NISHIMI: I don't have a strong feeling about
giving examples or not.
DR. CAPLAN: I don't like giving examples. I
would like to sort of say leave it over there.
DR. TAYLOR: They still make the decision. This
just gives them advice.
DR. LASHOF: All right, we will leave the four
examples.
DR. CAPLAN: I do have a style suggestion, though,
a point of anguish about page 29. I would like to see this
recommendation split into two parts, the one that is on line
three --
MS. NISHIMI: I thought about that after I read
the length of the recommendation.
DR. CAPLAN: The second one is a separate one. It
is a key one for us. I personally don't believe that they
would have admitted chemical weapons if we hadn't been here.
They are not doing it now.
We basically say they have to have someone
external to them. Let's really feature that.
MS. NISHIMI: I came away with the same thing
after I read it for the 10th time.
DR. LASHOF: So, we will have two recommendations
here. I think the second recommendation can't really begin.
You are going to have to rework the wording there to put it
in a better form.
DR. BALDESCHWIELER: What is the second
recommendation?
MS. NISHIMI: The first one is lines one through
three, as Art said, which is essentially the first sentence.
Then the second one would be recaptured. Obviously, this is
follow on, so the intro verbiage would have to be changed
slightly.
The second part would be the bulk of that, and
moving up the public accountability aspect, which is what I
heard Art say.
The last sentence, to ensure public
accountability, would then serve as the intro for that
recommendation, is what I heard.
DR. CAPLAN: Exactly.
DR. BALDESCHWIELER: Okay, I follow it.
DR. LASHOF: If you get down to line 13, 14 and
15, that would be the beginning of the second bullet and
would precede the sentence that begins, with strong
consideration.
DR. CAPLAN: Structured that way, the only reason
I was agitated slightly about the examples we were giving
about the types of oversight that could be there, I just
don't know if those groups have any veterans on them or have
any "public" members on them. I just don't know.
Since we are asking for public accountability and
oversight, I don't want to just give them a list of groups
that don't have what we want.
That is what my problem is. I don't mind
suggesting for instances, it is just --
MS. NISHIMI: I think we know how to recapture
that, yes.
DR. LASHOF: Any more questions or comments on
that aspect?
There are some comments at the bottom there on
credibility. We speak positively as to the efforts of ATSD,
Assistant to the Secretary for Intelligence Oversight on the
top of page 30.
Here we are commenting on the work of Mitre. You
were given a summary last night. I am not sure how many
were able to digest it.
MS. NISHIMI: You weren't actually given the
summary. You were given a chapter.
DR. LASHOF: I am sorry, not summary, a chapter.
MS. NISHIMI: If after reading that you have
comments pertaining to this, if in the next go-round you
could make those comments, then we will work it again.
DR. LASHOF: If you could get the comments in
before the next draft goes out, that would be much better.
I would suggest that you take a good look at that chapter
and see whether you feel comfortable or want changes,
additions or deletions from that paragraph one through nine.
MS. NISHIMI: Keep in mind that that is one
chapter out of a document that is about two-and-a-half,
three inches thick.
DR. TAYLOR: I am sorry?
DR. LASHOF: There is a document that is about
this thick. All the staff have reviewed that document, a
classified document at this point.
All the staff have clearance. All the staff have
reviewed it and all the staff are unanimous that the
paragraph here at the top of page 30 reflects their view.
So, what we were given was a redacted chapter,
which is one small chapter.
MS. NISHIMI: Actually, it was fully declassified.
It was redacted for Privacy Act purposes with the exception,
I believe, of about two paragraphs.
MR. TURNER: Of classified material?
MS. NISHIMI: Of classified material.
MR. TURNER: The substance of the chapter you have
fully reflects the substance of the classified version.
DR. LASHOF: We then go on to credibility and
commitment. There is no question that one of the things
that has plagued all of our activities and all of the
previous groups that preceded us and will probably plague
those who follow us is the problem of credibility.
That is not limited to this situation, in terms of
the public and government these days, but it is beyond our
scope to get into the broader credibility.
We have tried to address the problem of how we can
deal with the credibility of the government efforts around
this particular issue of Gulf War veterans.
I commend you to take a careful look at the
wording between lines 12 through 20, because that forms the
basis of the final recommendation we make.
MS. KNOX: I have a question about this
recommendation. The sentence, for benefits and future
research purposes, starting on line 20, of the available
scientific evidence regarding associations between illnesses
and service in the Kuwaiti theater of operations --
DR. LASHOF: You are now on page 31.
MS. NISHIMI: I want to go through the
recommendation in detail, if we could focus on the actual
precise wording.
DR. LASHOF: I was just going to say, I was giving
you time to reread page 30 and top of page 31, because it is
the background that leads to the recommendation. Then I
will carefully go through and read the recommendation.
MS. NISHIMI: So, are there any questions then?
DR. LASHOF: Do you want to make some further
comments about the material on page 30 and the top of 31?
MS. NISHIMI: I just want to make sure that the
committee is comfortable with the lead-up to this final
recommendation.
What the staff has tried to do in this section on
credibility and commitment is to point out that the well has
been poisoned in essence, and that the government's
credibility continues to be questioned and continues to
grow.
The committee would conclude that the credibility
gap between the public's views of the government's efforts
to address concerns and the reality of its initiatives
cannot be bridged without a more bold policy action.
That is to say, we have been making incremental
progress in policy refinements. They have been important.
But the committee would conclude that this incremental
progress is not going to be enough to address the pervasive
perception that the government lacks a commitment to its
veterans.
Is the committee comfortable with that lead-in?
DR. TAYLOR: I am.
MS. NISHIMI: John, is the committee comfortable
with the lead-in, the text leading to that recommendation.
DR. LASHOF: Is there anything to be gained or
does it make it less useful to try to put some context about
the fact that there is a general problem of credibility
concerning government and the public that is a much broader
issue and is one that we cannot solve, nor necessarily any
action that we can take will solve all of that context.
But, specific to the goal, we have to move ahead
and do whatever we can to bridge that.
David, do you think comments of that sort would be
helpful or not, at this stage in the report.
DR. HAMBURG: First of all, there is intensive
social science research going on at the present time about
that problem, and particularly looking at sophisticated
survey research which shows that there has been, since about
1974, a rather massive decline of public confidence, not
only in government -- this is a very interesting point --
but in other major institutions, and not only in the United
States but in the democracies of western Europe as well.
There is a context of broader distrust of
government and other powerful institutions that goes beyond
our scope, but presumably influences the attitudes that
occur in the context of Persian Gulf War illnesses.
It may well be that we should recognize, at least
in the sentence, that is part of the context. It is
certainly conceivable to me that, no matter what we
recommend, that that context is so powerful that such
distrust will continue and perhaps even grow.
However, within our context, we should address
what we think is sensible to address it, to try to make
initiatives and efforts regarding the Persian Gulf War more
credible than they have been in the past. We should try to
do that.
The question is whether we recognize the larger
context. Personally, I would rather have a sentence or two
to recognize that, because I don't think the attitudes of
the public toward the Persian Gulf War can remained
uninfluenced by the larger context of distrust that exists
out there. It is well known to exist.
MS. LASHOF: I think that is a very important
point.
MR. RIOS: To me, one of the problems with this
particular issue is that it took so long to get the
information out as to what happened, that five-year gap is
probably a factual matter that has fed into the public
mistrust.
The only suggestion I would have is that if you
want to add some meat to it here, you might want to refer to
how long it took to get the facts out.
MS. NISHIMI: The timeliness factor.
MR. RIOS: Especially when you are dealing with an
issue that is so hard to pin down and the research is so
limited and has so many shortcomings.
MR. TURNER: Something along the line of the DOD's
delays and denials have fed the public mistrust, or
something like that.
DR. CAPLAN: One other line of introduction to the
recommendation that I would like to see staff consider, and
again, I don't have the sentence in my head right now, but
if we think about our own existence and we think about the
fact that many veterans have come to lots of hearings and
told us about different problems and issues they have,
whether they have been frustrated or not, I think we have
been seen as a court of last resort, or a sounding board.
If they want to have credibility on this, part of
the problem is that people have come to the committee and
tried to tell us about their health problems of get heard
seriously or get their views heard about whatever they think
the cause might be of their illness.
That impact of hearing lots of people come makes
us understand the depth of the credibility problem and also
highlights the problems that standing institutions don't
seem to have been up to the task of meeting those concerns.
We have spent a long time hearing people come here
and say, will you hear us or will you pay attention to us.
Whether we did a good job of that or not, we will see.
That is part of the reason that credibility thing
is persuasive in my mind.
MS. NISHIMI: I am not sure how to capture that.
DR. CAPLAN: We heard too many times from too many
places unhappiness with existing institutions and approaches
and systems and it weighs on our minds and it has got to be
dealt with, just because those voices were so insistent.
MS. NISHIMI: Okay, I will take a crack at it.
DR. LASHOF: I am ready to go to the
recommendation unless anybody has anything else they want to
put into the introduction to the recommendation.
Our recommendation calls for the Department of
Veterans Affairs should work with the Congress to establish
a permanent statutory program for Gulf War veterans
illnesses.
The committee envisions legislation that directs
the government to contract with the National Academy of
Sciences or other appropriate scientific organization for
periodic review, for benefits and future research purposes,
of the available scientific evidence regarding association
between illness and service in the Kuwaiti theater of
operations.
The object of such an analysis should be to
determine statistical associations between service in the
Kuwaiti theater of operations and morbidity and mortality as
well as whether a logical biological mechanism exists,
whether research results are capable of replication and of
clinical significance, and whether the data withstands peer
review.
Based on the external evaluation, the Secretary of
Veterans Affairs should make a determination of a
presumption of service connections or publish reasons for
not doing so.
We believe specific details of such -- I would
suggest the word program rather than arrangement there. So,
I will read it as, we believe specific details of such a
program, for example, the timing, the length of an
individual presence in the Gulf, the frequency of the
scientific review, risk factors, are best left to the
department and to the legislators in developing the program.
I would stop and ask you to --
MR. RIOS: Are we going to keep that
recommendation that the committee envisions legislation that
directs the government to contract with the National Academy
of Sciences, or are we going to leave that up to the White
House?
DR. TAYLOR: We could change that around to say,
contract with the appropriate scientific organizations,
i.e., the National Academy of Sciences, for a periodic
review.
MR. NISHIMI: For example?
DR. LASHOF: Yes, contract with the appropriate
scientific organizations, for example.
DR. CAPLAN: You might even say, contract with an
organization with the appropriate scientific expertise. The
only reason I am watching that language carefully is because
there is this issue of the public nature of NAS meetings and
so on.
That is for another day, but there might be
reasons why in this case what you want might be the
scientific expertise that is available in a particular kind
of a format.
DR. LASHOF: You will note, however, that prior to
the recommendation we state that advisory committees like
ours are not well suited for such tasks.
DR. CAPLAN: Yes, I did.
DR. LASHOF: I don't think another advisory
committee is the kind of thing, primarily because it has to
be an ongoing institution that is going to survey from one
administration to another.
DR. CAPLAN: If the chair wishes to recommend
groups that it should not be, I would be happy to be
supportive.
DR. LASHOF: No, I think we have handled it in the
introduction.
DR. BALDESCHWIELER: What is the vision of when
this would come to pass. The recommendation is directed
toward the Congress.
DR. LASHOF: The VA is directed to work with the
Congress.
DR. BALDESCHWIELER: So, would the VA, for
example, draft legislation?
MS. NISHIMI: In the normal course of events, the
Congress ultimately has to introduce a legislation.
Depending on the particular topic or issue, there can be,
you know, multiple versions, give and take.
So, we don't specify VA should try to find a
member of Congress to introduce its version of legislation.
I don't think that is an appropriate role.
DR. LASHOF: But that is the way it works.
DR. BALDESCHWIELER: I understand. It is not
envisioned that the White House play a role in this.
MS. NISHIMI: Yes. The Secretary of Veterans
Affairs is part of the President's cabinet, so yes.
DR. LASHOF: We could put the White House rather
than the Department of Veterans Affairs, if you prefer.
Clearly the Department of Veterans Affairs does not
introduce legislation that hasn't been passed, reviewed by
the President and endorsed.
No department head goes down and introduces
legislation that the President doesn't give his okay to.
MR. RIOS: John, were you concerned about using
the Veterans Administration?
DR. BALDESCHWIELER: I am just wondering about how
this would work. The earlier recommendation identifies the
National Security Council.
MS. NISHIMI: Right, which is now the White House.
That is because the interested parties, that recommendation
went to the fact that we believed there needed to be an
entirely new oversight plan. That is why the White House.
This is a specific policy and a specific agency.
DR. LASHOF: This requires legislation. The other
did not. The other was something the White House could do
by itself. This is the kind of a program the White House
can't just establish. It has to be legislatively mandated.
DR. BALDESCHWIELER: The earlier recommendation
focuses really on the chemical and biological warfare issue.
DR. LASHOF: Right.
DR. BALDESCHWIELER: Here the issue is tracking
the health issues and the epidemiological issues.
DR. TAYLOR: And the credibility issues.
DR. LASHOF: For the government, not the DOD. This
is designed to assure the veterans that the government will
take an ongoing look at all the data and all the policies
and issues involved that relate to their benefits and the
results of the research and how it could influence that, the
health care, the total aspect, in an ongoing systematic
manner to address the issues that we have all been looking
at before that are not going to come to a conclusion with
us.
DR. HAMBURG: Let me think out loud about what we
are fundamentally trying to do. It seems to me right but I
am a little bit mixed up about how we are saying it.
I think we are fundamentally trying to say that we
have addressed certain critical issues that were brought to
our attention by the veterans and others.
It is very important that these issues continue to
be addressed in an ongoing way for some years to come.
Therefore, some strong mechanism is needed to do that.
Then we are saying that the mechanism created for
the purpose needs to have as much credibility as is human
possible in an atmosphere of distrust.
Then we are saying that to assure that that would
be done, we think it would require legislation.
We are furthermore saying that that legislation
would be most -- the part of the government most pertinent
to that legislation is the Veterans Administration.
Therefore, we are asking the Veterans Administration to take
the initiative to get it done.
DR. LASHOF: Correct.
DR. HAMBURG: I guess it is a logical sequence. I
have some misgivings to us. First, we are an advisory
committee to the President. Is it obvious why we don't say
we recommend to the President that he take these actions
with special attention to the role of the Veterans
Administration?
Maybe that is just a matter of protocol because we
are an advisory committee to the President. It may not be.
It might be that there are resources in the
government beyond the Veterans Administration that would
have a strong bearing on how well this is done in the
future.
For example, the main capacities of the government
in health, by far, is the Department of Health and Human
Services.
I understand that they are not primarily focused
on the veterans. However, their resources have in the past
and could in the future augment the capabilities of the VA
in this respect.
Maybe it is more than protocol to say that the
President should, in fact, mobilize the Veterans
Administration to establish the kind of mechanism we want,
with primary attention to the role of the Veterans
Administration. I am not sure, but I want to raise that
issue.
MS. NISHIMI: I think we can sort of capture that.
I do want to point out that in particular one of the reasons
that we want to link back to the Department of Veterans
Affairs is that this doesn't go just to the issue of
research. It also goes to the issue of the benefits.
So, I want to make sure that the committee
understands that. It is not just about evaluation of
research periodically. There is this issue of benefits.
DR. HAMBURG: I am trying to say -- I am not sure
that it is quite adequately said, but you are trying to say
that the ongoing review in the years ahead and the research
would include this implication for benefits.
MS. NISHIMI: Yes, it needs to be tied quite
closely and absolutely to the disability compensation
process.
MS. KNOX: Robyn, on that note, and we are talking
about benefits for veterans, I think we really need to look
at the sentence that says, associations between illnesses
and services in the Kuwait theater of operations.
I think there are veterans who have experienced
stress that were in Germany, that were in CONUS, that would
be included in this legislation as well.
MR. CROSS: I also have a concern with that. I am
somehow in my mind, we are establishing the limit to
eligibility.
DR. HAMBURG: Service in the war.
MS. KNOX: Service in the Gulf War, rather than
limit it to the Kuwaiti theater of operations. If you were
in Germany, you may have taken PB tablets preparing to go.
So, you may have some of the same risk factors, wherever you
were.
DR. BALDESCHWIELER: Let me come back to make sure
I understand what it is that we are suggesting once again.
That either the Executive Branch in some form present
legislation to the Congress to do what; to create a review
committee that meets periodically?
MS. NISHIMI: No, to create a permanent statutory
program. Program means entity.
DR. BALDESCHWIELER: Permanent employees doing
something?
MS. NISHIMI: Yes, people have to administer a
program.
DR. BALDESCHWIELER: So, this is a full-time staff
somewhere?
MS. NISHIMI: Yes, there is a full-time staff
somewhere because someone has to administer the type of
program that Congress would create legislatively as
envisioned here, which directs a contract with -- I am
trying to recapture Art's language -- an organization with
the appropriate scientific expertise, such as the National
Academy.
That scientific expertise body and staff would
conduct an analysis.
DR. BALDESCHWIELER: In the academy framework, for
example, this would be a full-time staff in the National
Research Council plus an outside expert committee that would
meet periodically?
MS. NISHIMI: Yes, that would be one mechanism
within the academy. It wouldn't necessarily be the same
committee, every two or three years, whatever Congress
specified.
DR. BALDESCHWIELER: But there would be a full
time staff with documentation and record keeping.
MS. NISHIMI: Correct.
DR. LASHOF: And a well-established plan as to the
methodology that would be used to evaluate research to draw
conclusions and to interpret the importance of that data on
the issue of benefits as well.
MS. NISHIMI: The committee should know that this
is not unlike functions that the academy already does for
the VA in many respects. It is exactly comparable.
They do it. They evaluate the scientific
information for many things.
DR. CROSS: Suppose that committee ends up
residing in the DOD?
MS. NISHIMI: That is what this recommendation --
well, we don't tell Congress they can't do that, but our
advice is that it go in this direction.
MR. CROSS: Should that be mentioned?
DR. LASHOF: That is why we said, to contract with
a scientific organization. That is an outside organization,
if you will. We can put in the word outside. Congress can
decide to do it any way they wish.
MS. NISHIMI: They can recommend to put it inside
DOD. I don't think they will.
MS. KNOX: Can I just add something further to
that.
DR. LASHOF: Sure.
MS. KNOX: In the recommendation that we made back
on page 25, I think it was commendable. You say at the end
of that, when the facts of the situation are indeterminant
or ambiguous, you said the DOD decision making related to it
should weigh in the favor of veterans.
Can we add that concerning the VA when a situation
is indeterminant or ambiguous to this recommendation?
DR. LASHOF: I don't see how we can here. What we
are doing -- that would be involved in writing the
legislation or helping write the guidelines for the
organization that is established.
MS. NISHIMI: You are kind of far down the tree
there.
DR. LASHOF: I think we have to leave that.
MS. KNOX: Well, you say here the Secretary of
Veterans Affairs should make a determination of a
presumption of service connection, or publish reasons for
not doing so.
Could you add something to that at that point that
would -- as it is now we are leaving specific details to
legislation and to departments.
DR. TAYLOR: Where are you now again?
DR. LASHOF: She is now up at the top of page 32,
lines 2, 3, 4.
MS. NISHIMI: Arguably that sentence should go,
too, because that is farther down the tree, frankly.
DR. LASHOF: If that stays, I suspect your
addition should be added. Whether that statement should be
there, maybe we should remove that and really leave that
kind of an issue --
MS. KNOX: We say based on the external
evaluation. I just think there will always be incidents
that will be indeterminant and we should weigh it in the
favor of the veteran.
MR. RIOS: I kind of like the language there that
says they should make a determination of a presumption of
service connection.
MS. NISHIMI: Presumption implies. We could put
semicolon, our view again is policy decisions of
indeterminant or ambiguous findings should weigh in favor of
veterans.
DR. BALDESCHWIELER: I guess I am uncomfortable
with that. I am not sure what that means. Weigh in favor
of which, the veterans view on which issue?
MS. KNOX: When you are talking about their
benefits and service connection.
DR. BALDESCHWIELER: In the earlier case I don't
think it makes sense either.
MS. NISHIMI: The staff is going to have to recast
much of this. Why don't we play with both sentiments and
see if we can move forward that way and in the next
iteration you can check it out.
DR. LASHOF: It might be that some of that might
go in the preamble to it, rather than in the program. Even
after the recommendation we could put some of the issues we
think need to be addressed are, something like that, and
leave that open.
MS. NISHIMI: Not part of the bullet. I think I
know where I could take this.
DR. LASHOF: Any other? Are we comfortable, then,
clearly with the point of this recommendation, recognizing
we will see new language that makes it a little clearer.
This is a new program that is being mandated
legislatively.
MR. CROSS: Would it be fair to mention veterans
service organizations in here? At some point they are going
to become a watch dog in a lot of these efforts.
DR. LASHOF: They always are. We don't have to
tell them.
MS. NISHIMI: I think that legislators and the
department are going to hear from many quarters. To single
out organizations versus individuals, no.
DR. TAYLOR: I don't think it would be necessary
in this context.
DR. LASHOF: In a sense we try to capture that in
lines 8, 9 and 10, where we recognize our charge to
Congress, our recommendations urging action by the Executive
Branch, and we hope a partnership among all the concerned
parties can implement this. Clearly, concerned parties
would be veterans, veterans organizations and others.
We recognize that the burden will rest ultimately
with Congress to address the recommendation in legislation.
Okay, we make, then, a final statement about the legacy and
that we hope that this legacy will now also include that the
government acknowledges and does honor its obligation to
care for the men and women who served in the Gulf.
We express our appreciation to the President for
being given this opportunity to serve the veterans and their
families.
Are there any other final statements that anyone
else wants incorporated in our closing statement here at the
end of this special report?
DR. HAMBURG: I don't think it is a closing
statement but somewhere -- it is a concern. I think what we
have now before us I think is generally excellent.
It starts off and goes straight to our mandate for
an extension, these additional months. It is very
businesslike and very well focused.
At the same time, it lacks any concise overview of
our whole mission from start to finish, how we pursued it
and what we hoped would come out of it.
I really think it is important for us to have such
a concise statement of what we were trying to do, how we
pursued it and what we hoped would come out of it.
It could be the preamble, it could be the
executive summary, it could be a covering letter.
I think in a way in a certain sense it is too
bureaucratic to say, the President asked us to extend this
for a certain number of months and this is what we have done
in those months.
We do have some history. In other words, you
could say something like this. We undertook to
comprehensive, systematic thorough examination of all facets
of the Persian Gulf War illnesses with strong encouragement
from the President to pursue all lines of inquiry in an
independent way.
That included trying to get the facts straight
about what happened during the war that had a presumptive
bearing on illness, and also about the insight derived from
research about causes, prevention and treatment of such
illnesses.
We tried to learn from experience of previous
post-war situations and to go beyond them where necessary,
those other earlier wars.
I think it would sensible to say concisely what we
tried to do to fulfill this charge; stimulate departments
and agencies of government and also the national and
international scientific community to address the problems
of Persian Gulf War illnesses in their full complexity.
Finally, as we have just been discussing, that we
try to set in motion a process, both within the government
and outside the government to sustain -- I emphasize sustain
-- this work to promote the understanding and care of
veterans for many years, and to apply the lessons learned
from the Gulf War experience to future deployment.
That is kind of a crude first approximation of an
overview of sort of where we were coming from and where we
are headed.
I believe that we need that somewhere. Whether
that is in the introduction or at the end of a covering
letter, I am not sure.
I would hate to see us send this off without
giving some kind of overview of what this whole thing had
been about.
MS. NISHIMI: I think I could work with that play
around with placement and then you will see it in the next
version.
I understand what you are trying to capture; sort
of the role of the committee in the bigger picture, not just
this.
DR. HAMBURG: Above all, Joyce and Robyn have led
us through this enterprise and I might take a moment to say
how deeply I appreciate that. I think I speak for all the
others.
The leadership we have had, our chairman and the
superb staff is really extraordinary. I have done a lot of
these things and this has sort of had a remarkable quality
of leadership.
DR. LASHOF: Thank you very much, David, for that.
I concur with your desire to see that kind of an overview.
My feeling at this point would be the introduction might be
the most appropriate. We can defer that to see how staff
works on it.
MS. NISHIMI: My feeling would be the transmittal,
but we will work on it.
DR. LASHOF: Okay, transmittal or introduction.
The introduction, we can discuss that.
MS. NISHIMI: I will capture it, put it in there
and then you all decide where you want it.
MR. RIOS: It may make sense -- I think this is
taking off what David said -- to kind of look briefly at
where we were when we started and where we are now, the
presumptions, the government's disclosure, the research that
is underway, where things were when we started two years ago
or a year and a half ago.
MS. NISHIMI: I understand the gist of it.
DR. LASHOF: Do we want to take a moment, Robyn,
to take a look at the executive summary?
MS. NISHIMI: What I would like to do, because I
think there were several important sort of broad topics that
were interjected, is to work that into the summary and then
you will see it in the next iteration.
The summary as it stands really right now is not
an exact replication.
DR. TAYLOR: The executive summary goes at the
beginning of our report?
MS. NISHIMI: Well, what I had hoped to do, but I
don't believe we will now be able to do, was to have this
report, in terms of the summary -- in essence, a summary is
like an abstract of a paper. So, it is all contained on the
first page.
I think there would be a high degree of utility if
we can remain with that format. This is a relatively short
report, it is essentially 30 pages double spaced now. Once
it goes down to a single space type face, it would be
formatted.
That was my feeling, to try to go for that
abstract format. I think we should still proceed along that
line until the summary becomes as big as the report, which I
hope that it would not. In that case, we would rework the
format.
Yes, I do think it would be useful to have, in
essence, the abstract/summary up front.
DR. LASHOF: Any other comments on the text itself
now? Do you want to tell us a little bit about the process
and time table, Robyn, before we complete?
MS. NISHIMI: Yes. What I intend to do,
obviously, is to take all the comments. Staff will feed in
with the additions and the rearrangements and edits. I
anticipate that there will be no problem getting a revised
version out to you by the end of next week.
Frankly, I could do that by Monday or Tuesday.
DR. LASHOF: That is because you work 24 hours a
day and on weekends.
MS. NISHIMI: It is Friday and the staff probably
would shoot me if I demanded that. So, we will take a few
days and we will get it out to you and ask you to read it
quite quickly, frankly, to turn it around.
Then it needs to go out to external parties for a
review and fact check. I don't intend to send out -- my
intention is to send out a redacted copy -- that is, the
committee's recommendations would not be included.
Those are the committee's words and the
committee's works and, let's face it, we have had a problem
with leaks before. I would do that. There would be a
redacted version sent out for review. Then that would come
back in.
Again, I would impose a requirement on the
external parties that it be a very quick turnaround.
Then one last version would be created based on
the external review. That would go to the committee one last
time. Then it would come back in and we would go through
the typesetting and production process.
DR. TAYLOR: So, it sounds like your projected
date for completion is somewhere near the end of September.
MS. NISHIMI: I believe that if we can get it to
the printer by the end of the first week in October, we will
be able to receive the printed copies to deliver to the
President by October 31, as we were required to do under the
Executive Order.
So, it will demand some sort of immediate
attention periodically from the committee and I appreciate
in advance your attention.
DR. LASHOF: Any further questions anyone on the
committee has to Robyn or any member of staff?
DR. TAYLOR: I just want to say thank you to the
staff for the superb job you have done on this. We have
said this before.
DR. LASHOF: I will give everybody a chance to
make any closing statements. I want to finish the business
aspects first.
Since this is our last meeting, I would be happy
to go around the table and have anybody make any closing
statement they want on any aspect of our work over the past
essentially two years now.
We had our first meeting in August of 1995 and
here we are two years later, 23 meetings later, in September
1997.
We will start at Art's end of the table and just
go through. You are not obligated to say a word if you
don't want to. It is just the last opportunity.
DR. CAPLAN: I will just say I was very
appreciative of the chance to serve the veterans community
and to benefit from having such able fellow committee
members and to learn a lot from the staff.
I felt that people really did yoeman's service on
the committee and I learned a great deal from each one of
you and appreciate the chance to have had that opportunity.
MR. RIOS: My comments would also just be
addressed to the veterans. When we started out this
process, the government's position was that there was no
evidence of any exposures to our veterans in that Gulf War.
As we end the process, I think it is clear that
the government has now taken the position that it is very
likely that there were low level exposures.
Tremendous resources are going to be spent on
research, research that was not even thought of before we
started this process.
Also, there appears to be a presumption that if
you are ill, it was probably caused by your service in the
Gulf War.
I hope that the veterans feel that we have served
them well.
DR. BALDESCHWIELER: I would like to add that this
has been a very illuminating process. As so often happens
when one gets together a committee of capable people with a
mandate to look critically at issues, a number of things
turn up that none of us would have expected at the outset to
find.
As one example, I think that the process has
really illuminated some serious deficiencies in the U.S. war
fighting capability with respect to chemicals and
biologicals.
I think those deficiencies should not go
unnoticed, and are a matter of important and urgent future
attention.
MR. CROSS: Let me first say that it has been an
honor for me to serve on this panel. I just want the
audience to understand that other than staff here, all of us
have other full-time careers, families and other interests.
Yet, I always found it amazing that the committee
members would show up and put in an effort to put closure to
this issue.
Again, I would like to thank the full-time staff.
I think they did an outstanding job in the background when
obviously the rest of us were out doing our regular work.
I hope I personally added a little insight in
terms of an actual veteran of the Gulf War. I learned a lot
from my counterparts here.
I mentioned it earlier but I need to highlight it
again. This committee does go away. Yet, the sick veterans
and the questions still remain.
I would like to charge the veterans service
organizations. I think you all need to step up to the plate
now and take a couple of swings at this.
There is a lot of -- they have a lot of vehicles
and an organization all among themselves. To be the future
watch dog of efforts in terms of future research, I think
they are key to this whole thing.
Again, to all my counterparts here, thank you very
much. It was a pleasure.
DR. TAYLOR: I wanted to say again, thanks, to the
staff. Also, I work for the United Auto Workers. I
represent workers on their jobs.
I feel your pain as veterans because we have some
of the same problems when we are trying to identify
exposures in the work place.
It is very hard to identify what causes illnesses
in many cases. I want to say I think the government has
responded to our recommendations.
They have done a good job at responding with the
research that is ongoing. I want to caution the veterans
that we may never know what the causes of the veterans
illnesses are.
With all the research that is being funded, with
all the money that is being given, we may never identify an
exact cause.
What we should be concerned with and what I hope
we have learned and what the government has stated they will
do is that they will treat any veteran who served in the
Persian Gulf for their illness.
They will be cared for and they will not go to a
physician in the VA system and be identified or brushed off
as not being a serious illness. I hope that is what we have
learned from all of us, that that actually happens.
Maybe there will be some answers, but again, I
just want to err on the side of caution. There may not ever
be, and thank you again.
DR. HAMBURG: I already expressed the deep
gratitude I feel for our chair and our staff. We are very
fortunate.
Working with this committee has been, as others
have said, a privilege. I have learned a lot.
I want to say a word about the inherent
frustration for us and for the veterans in the nature of
this situation. It flows somewhat from what Andrea just
said.
There is so much that is unknown and so much that
is unknowable in light of present techniques and capacity.
We were bumping up against very complicated considerations
that were terribly hard to sort out, even to a modest
degree.
A lot of it is the inherent fog of war, the
classic fog of war. From time to time, I suppose, our
colleagues in the Department of Defense were saying to us,
in effect, look, we were fighting a war to win a war. We
weren't running a school or a clinic or a social service
agency. I understand that.
We pointed out the deficiencies in the record
keeping and all of that. It was awfully hard to know who
was exposed to what, when and where and for how long, let
alone what the consequences of it might be for health.
They are very, very hard problems. Part of it is
in getting the facts straight about what went on during the
war. Part of it is in the research based information to
understand what it would mean for health.
I know that we and the veterans were constantly
hearing about very technical, complex, ambiguous reports
that are very hard to understand and somehow or other you
have to trust somebody to some degree, that the information
available is being adequately analyzed and all of that.
There are inherent frustrations about the known
and the knowable in this experience. Yet, as I think others
have pointed out, we have made an impact, I believe.
I believe we have made a difference, perhaps just
as a stimulus to a lot of good people in a lot of different
places in government and out of government to look harder at
these problems, to apply a great deal of human ingenuity and
dedication to figuring out what happened and what we can do
now about all of that.
I think particularly insofar as we have stimulated
the international scientific community -- and I believe we
have -- there is a real possibility that the insights that
will emerge in five and ten and twenty years time will not
only be helpful to those who served in the Persian Gulf War,
or even to those who serve in future military deployments,
but really to people at large.
For example, the relation of the chemical agents
involved in the Gulf War to insecticides that are widely
used throughout the world is a significant one.
Who knows what other ramifications there may be
that would be helpful to people everywhere. At least I do
believe there is some basis for anticipating a broadly
useful outcome from the kind of work that has been set in
motion.
I don't just mean by what this committee has done
at all, but by fundamentally the President's elevating this
to a level of broad public concern, giving us a license to
go hunting in any way we saw fit.
More than that, it was to getting a lot of people
thoughtfully addressing these problems and seeing what could
be done about them in the future.
So, I think there is some basis for supposing that
this has been a constructive enterprise and will have
ramifications for years to come.
MS. KNOX: Gosh, this is an emotional time because
this has been a wonderful two years. There have been a lot
of accolades that have come with being a member, as a
veteran who served on a Presidential advisory committee.
I will say, however, there has been a lot of pain
and a lot of sacrifice.
I do want to thank Joyce and Robyn because they
have shown good leadership. I will say that I have been one
of Joyce's biggest supporters. I have been to every meeting
except three.
I have also probably been her biggest concern
because we have not always agreed on matters, and she has
allowed me to share my opinion about veterans opinions very
openly.
So, the Gulf War experience was not a good one for
me. I left a six-week-old baby to serve in the Gulf, to
participate in the 251st evacuation, which was at King
Khalid Military City in Saudi Arabia.
So, this was a pleasure to serve my fellow
veterans. However, I will say, at each public testimony I
felt your pain. I still do.
I regret the fact that research and technology has
not revealed what the causes of many of the veterans'
illnesses are.
I do hope that you will take with you the fact
that our final report -- you know, we didn't have all the
information that we needed and we still don't.
But our hope is that changes in policy will allow
you to continue to receive care and also to get the
compensation and the benefits that you so deserve.
We appreciate what you did for the American
people. Many people don't realize that the freedom that we
have is not free. Your service is very much appreciated.
DR. LASHOF: Thank you very much, Marguerite. Let
me say, as chair, again, I share with all of my colleagues
at the table our gratitude and confidence in the work that
Robyn and the total staff have done.
It has been a yoeman's job. I found it a real
pleasure to work with them on all the issues. I have been
in contact with them every step of the way and yet it is
their work that made our work possible.
So, I join all of those in that. I thank you all
for the thanks you have given to me.
I want to thank every one of you for the
contribution you have made. Each of you have come from a
different kind of discipline and bring to the committee
knowledge and the expertise of your discipline.
Especially to Marguerite and Tom, the veterans in
our group, I know how hard this has been for them, to share
the pain of the veterans, as Marguerite has so beautifully
expressed it.
I know how difficult it has been for her to not be
able to come up with all the answers. I think we have had a
good relationship. I appreciate her support and I
appreciate her being honest and open about how she feels all
the time. That is her role. That is what she should be
doing and she has done it well. Tom as well.
I think everyone has contributed very
significantly to this work. I have chaired lots of
committees in my career. This has been one of the more
fascinating ones among them.
It has been one in which I cannot think of another
committee that has had as dedicated a staff or as dedicated
members to the committee as this one.
I really do believe that, between our interim
report, our final report and this special report, we have
made progress in moving ahead on these very complex issues.
I am not going to repeat them. David said a great
deal.
I can't resist closing, as Robyn would probably
expect me to do, that the real dream is to have a day
without war, so that we don't have to face these kinds of
things, and a day in which every one of our citizens is
eligible for health care without worrying about means tests
and special programs.
With that, I turn it back to McGuire to close
this, our final meeting.
MS. MC GUIRE: As the designated federal official
and the President's representative, I would like to extend
the White House's appreciation for all of the committee and
the staff's extraordinary work, and acknowledge all that you
have accomplished. The meeting is adjourned.
(Whereupon, at 10:48 a.m., the meeting was
adjourned.)