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Q: Talk about it as a public health problem. What was the phenomenon?
A: In 1994. Let's talk about it in 1994. In many ways it was a classical
public health problem. Because there was a scientific dilemma, a medical
dilemma. Here were people with symptoms who had all been in the same place at
the same time, roughly, and with symptoms that didn't lend themselves to a
ready explanation, and so you had the medical dilemma. And then of course,
like all public health problems, there was a very large political dimension to
it, which I'm sure that you have been talking about with other people that
you've interviewed. The political dimension and the tension between the
political dimension and the medical dimension was evident even then back in
1994 when we began.
Our approach was to start with the medical, start with the patients and try,
through that, to understand what was going on and then convey that to people.
As always, the first part is easier than the second part.
Q: Clearly, even in 1994, this wasn't a very straight forward public health
problem because unlike, say, Legionnaires' Disease, or AIDS where you have some
really acute endpoint.
A: No you didn't. Even by 1994 there had been attempts to define what a case
was, to define what a symptom or a syndrome represented, and that was very
unclear. There was no endpoint either in time or in the clinical dimensions.
But more public health problems begin that way than begin with a sharply
defined endpoint. I mean, you used the example of Legionnaires' Disease, but
we could also take the example of AIDS, and if you look at the early months and
even years of the AIDS epidemic there was great confusion and uncertainty not
only about what was going on, but what were you seeing that you could related
to what was going on.
I think that's not infrequent.
Q: In 1994, was it clear that we were not talking about things that kill
people, or was everything still on the table. Had you already excluded things
like Lou Gehrig's disease and arthritis or was it still an open question?
A: We, from the medical point of view, we just were going in with all bets off
and we were going to begin asking people to come forward who had symptoms or
who felt they were ill, and to see what that data showed us. There's a
weakness in that of course, in that you are selecting in a sense, the
population that you're going to try to understand, and you don't have what's
called a representative sample. You get a sample of the people who believe
they're ill, who are ill, who have symptoms, and you have to work with that.
But it was the only place that I could see that we could begin, because there
really was no evidence.
Q: You do this initially, with this group, this selected sample, to try to work
up a case definition. Is that your objective?
A: Yes, to try and see, I think the way I like to put it, to see if we could
find any signposts or markers. If, for example, I don't mean to trivialize
this, but if for example we found that all the people who came forward with
symptoms A, B, and C, had red hair, you would look at that as a signpost. Or
if all the people, to be more realistic, who came forward with A, B, and C, had
other things that tied them together, in time, or space, or the kinds of jobs
they did in the military, or the particular symptoms that they had. Then that
would lead you further and further down a path of trying to create a case
definition.
Q: So is this a registry?
A: Well it really is a registry. We went and asked all the people who had
symptoms, who felt they were ill, to come in, to put themselves on a registry
and to come forward for a medical examination. We worked up the specifics of a
sort of staged medical evaluation, in stages of sophistication and complexity,
with the Veterans Administration and with a committee in the Institute of
Medicine, National Academy of Sciences Committee overseeing our work, and began
to use that as a kind of a template to try and understand what was there.
Q: How many evaluations did you do?
A: By the end of two years we had done 20,000 evaluations. That's a lot of
people. I think probably this was a larger comprehensive medical evaluation
than has ever been done in any of these kinds of instances where a new or
mysterious or unknown combination of symptoms pops up. Remember, at that time
people were still talking about Mystery Illness.
Q: What did you find? Did you find a syndrome?
A: Not really. I think there's been a lot of word play about whether there's a
syndrome or not. What we found was the following:
We found that in looking at 20,000 people in detail very very carefully from a
medical point of view, we found that there was no single unifying hypothesis
that could explain the symptoms of large numbers of people. There was no magic
bullet. There was no mystery illness. There was no Gulf War illness. What
there was was several groups of people in this 20,000 patient sample. The
largest group were people who had illnesses that were readily understood by our
current diagnostic framework. In some cases they were illnesses that people
would have had whether they went to the Gulf or not. In some cases they were
illnesses or injuries that were a result of being in the Gulf. If you have a
chronic arthritis of the hip from an injury that you got jumping off the
mechanized vehicle, that's related to your service in the Gulf very directly.
So that was the largest group. Readily definable illnesses. Then there was a
small group, a much smaller group, who had symptoms that really couldn't be
understood or put into a current diagnostic framework.
Q: What kind of symptoms?
A: They were symptoms that were combinations of physical and psychological
symptoms. The mportant things about this group really were two. One, that's
the group that you really want to look at most carefully to see if there isn't
something that you don't understand at present, but that might become clear as
a cause of these symptoms in the future.
Secondly, it's important to understand that that group of patients is not
unique to this sample of people who served in the military in the Gulf. If you
look at any population of patients, any cross section of patients, you will
find a very significant number, 4, 5, 8, 10 percent, sometimes more, who don't
have readily explainable diagnoses. If you look at what walks in and out of a
doctor's office or a university clinic or an HMO every day, actually a very
large number of patients have symptoms, headaches, fatigue, depression, muscle
soreness, joint pains, etc, that don't fit a pattern of a clear disease
diagnosis.
There were approximately 700,000 Americans who served in the Gulf. Depending
on which figures you use about registries and medical evaluations, perhaps
60,000 people, now, five or more years later, feel themselves ill with a number
of symptoms. A very diverse -- the variation in symptoms among the people in
our medical evaluation was very very large.
That's not an unexpected kind of number. If you look at a small or medium
sized American city on any given day and said to over half a million people,
How many of you in the last four or five years have been ill for some period
of time, or haven't felt well, or have had symptoms of any kind? You would
have a number of probably much larger proportion. Probably much larger than
that. So I think from the medical scientific point of view, that's not the
issue. It's not surprising that four or five years after the event you'd have
40,000 or 50,000 out of 700,000 who are "ill." The important thing from the
public health and the medical point of view is, What are they ill with? What
symptoms do they have? Can you cluster those symptoms into groups that leads
you to look for a single cause, or a number of causes that are behind those
symptoms?
What we found very clearly, and what's been validated by every scientific
group that's looked at this is the answer is that you can't. You can't take
the 20,000 patients in our clinical sample and say that a significant number of
them, a large number of them have symptoms that cluster in a way that are
recognizable as a medical illness or that are likely to relate to a single
cause, this or that. Now, might there be in that group of 20,000 very small
clusters of patients? Might there be small numbers of people, 20, 30 people
who have a series of symptoms that we have not yet been smart enough to cluster
into some recognizable entity? There might. But as time goes on and as the
weight of the medical evidence gets stronger and stronger about the variation
in the symptoms, the non-pointedness of the symptoms to a particular diagnosis,
that likelihood gets less and less.
Q: Talk about the age of the people in this war. This was -- a lot of
reservists served in this war. Was this a different profile to previous
wars?
A: Well there were many reservists. There were many more women in the theater
than in previous conflicts. But I think too much has been made of that issue.
Earlier in the discussions, 1994, 1995, there were some suggested that the
mystery illness was all in reservists and not in active duty military. That
didn't turn out to be true when we looked at the data. There really was
nothing special about reservists versus active duty, men versus women, officers
versus enlisted, ethnicity or race, there really wasn't any marker there that
would point to this.
Q: So with the outcome side, you were not able to find anything unique. Is it
still worthwhile looking at the other end of the equation, the risk factors and
the exposure? Is that going to be helpful?
A: Well it is, but of course you're working more or less blind. What we did
with the clinical evaluation is not the way you would go about a scientific
research project. We self selected in a sense our group of people. We used
them, as I've said before to try and, one, take care of them. Our first
priority was to take care of their illnesses and their symptoms. But at the
same time we tried in our diagnostic and therapeutic work to see if we got
these signposts that would take us further. Now at the same time, while you're
working at that end, if there are likely, possible, risk factors, I think it's
perfectly appropriate to work from the other end at the same time and see if
you can make some kind of combination fit of groups of people with symptoms and
possible risk factors. That's a pragmatic way to approach this, but I think
it's also an appropriate one. But I think what you can't do, and what is
unfortunately a great tendency, particularly in people who don't pay too much
attention to the data and the science, you can't just because you believe
something might be connected, you can't make an assumption and a declaration
that it is connected.
Q: There was a whole number of possible risk factors in this environment that
people were interested in discussing.
A: Depleted uranium. Cocktails of vaccines. Infectious agents. Tropical
diseases. The protective medication against chemical attack. Chemical
weapons, biological weapons. There's a whole laundry list. All of which are
legitimate issues to question. Don't get me wrong in this. It would be really
inappropriate to say, No. Nobody should raise that. Of course they should be
raised, but when you raise a causal issue, I think you have a responsibility
to have some actual basis, to have some data, to have some evidence, to have
some logical connection, not just kind of make it up because it is somehow
appealing, either politically or in a media sense, or whatever. And what was
all too often the case was it was sort of the headline value of a possible
cause rather than any sort of reasonable, logical factual basis for its
existence.
Q: So there was a lot of interest in pyridostigmine bromide wasn't there?
A: Sure.
Portrayed as an experimental drug, using soldiers as guinea pigs, da. da. da.
Let me say first, I wasn't around when that decision was made to distribute it
and have the troops use it under conditions of the threat of chemical attack.
But I totally support and approve that decision and I would like to think that
I would have the wisdom and the courage to make the same decision in those
circumstances in the future if I was in that position. I mean, we knew, this
is all speaking of hindsight, and I'm speaking really from hearsay and
information, because I wasn't in the Department at that time. But we knew they
had chemical weapons. We knew there was a good chance that he would use
chemical weapons. It's now common knowledge that we went so far as to have
Secretary Baker have a talk, get a message to him to that extent, about what
the consequences of his use of chemical and biological warfare.
So we knew this was a very real threat to our people. We knew that we had a
medication which could be of significant importance in preventing a catastrophe
in terms of casualties if troops unprotected were subjected to chemical agents.
We had this medication, which has been used for 30 years, in very significant
numbers of people, but for another purpose. Peritostigmine is an effective
medication against a disease, not a terribly rare disease, but a somewhat rare
disease called myasthenia gravis, and it has been used, by the way, at 10 times
the dose that you use it to prevent again chemical warfare agents, in tens of
thousands of people with very little, no really overriding side effects. It's
a valuable and important medication. The way our drug approval system works,
and there's good reason for this, the fact that's it's approved for treatment
of myasthenia gravis does not make it approved for protection against nerve
agents. Well, how are you going to do the research necessary to prove, in the
clinical trial sense, that peritostigmine is safe and effective against -- you
can't do that research. You can't do that human research. So the drug has not
been licensed for that purpose. But there was every reason to protect our
people with peritostigmine. There was every good medical judgment reason to
not be deterred in using that drug, and the Department went to the FDA and got
approval to use it. So, it was the correct decision in my view.
I think after the fact it's proven to be the correct decision, and also there
is no firm or even really suggestive reason to think, after the fact, that
peritostigmine might be responsible for Gulf War illnesses. So the whole thing
is really smoke. The whole thing is really smoke and it's been used sometimes
in a very cynical way and more often than that, particularly by members of
Congress, in a kind of irresponsible way. Oh, there's a lot of people with
symptoms. Oh, here's this peritostigmine which, you know, etc., is not
approved for this use. Bang. Let's put them together, and there's the
headline. That's bad medicine. I think in the long run it's bad politics.
But that's not my side of the street.
Q: There was also claims that the vaccines might be responsible. Talk about
that.
A: Well, again, people were picking up -- particularly in the media and in the
Congress, people were picking anything that they thought might sound to them as
if it would be interesting to see if they were causally connected with illness,
and because it was possible, therefore it was real. And when one by one these
things were shown not to be, by any reasonable assumption, connected, then you
would hear people say this kind of idiocy, Well, it is wasn't A, and it wasn't
B, how do you know it wasn't the combination of A and B? And if wasn't the
combination of A and B, how do you know if you added C into it that the
combination of A, B, and C, couldn't been it. That's not a way to proceed to
either be helpful to the people who were suffering, or to enlighten the public.
But that's what was done.
Of course, you know, one of the major issues in the whole thing is that we, we
speaking collectively, for reasons that are unfortunate but understandable,
shied away from looking at the greatest risk factor of all. The greatest risk
factor of all were the stresses of combat and of the environment that we placed
people into. As the medical data and the clinical data began to unroll from
1994 onward, it became apparent, and should not have been a surprise, and
should not be unexpected, that many many people who had physical symptoms also
had psychological symptoms. And all of us know from our own lives how
interconnected these two areas are and how one influences the other and how
difficult it is to tease the psychological components from the physical
components. And that of course was really what much of this was about. It is
regrettable that we were, collectively again as a society, and still are,
unable to look at this squarely in the eye and understand it for what it is.
Q: From your point of view, after you have done, you've begun this
investigation, you've set up these registries and so forth, what kind of
problem did you face communicating these findings? How well did those
conclusions go down with the general public?
A: People have a great resistance to hearing what they don't want to hear.
There are, and were, in this issue, individuals and groups that were determined
to find a mystery illness, determined that there would be a mystery illness,
particularly one that would show the malfeasance of the government. And it was
not an acceptable message, not a palatable message to some members of the
media, to some members of the veterans groups, and regrettably, to some members
of the Congress, to accept what the information, what the scientific data
showed, which is that there was a wide variety of symptoms, there was no single
or unique mystery illness, and most importantly, that stress, that
psychological stresses were very intimately and importantly related to the
physical symptoms. This was a disagreeable message and people did not want to
hear it. So that's number one.
Number two, this is a very complex area. It's not easy to reduce it to sound
bites, particularly when you have the conclusions and the findings that we've
been talking about. And so, even in the best of worlds it's a difficult
complex message to convey, even if it weren't unpalatable.
Number three, there is a great reluctance in our society to accepting that
among the risks and hazards and damage that can be done to people when they
serve their country in a combat or armed conflict situation, is the
psychological damage. Again, it's something that we all know intuitively. All
of us in my age group remember the aftermath of WWII and the Korean War, and
the Vietnam conflict and the psychological casualties of those wars. But we
don't like to talk about it. We don't like to admit it to ourselves in the
open. In a way I think that's the greatest tragedy of this whole Gulf War
illness issues, is that if we really had a chance, perhaps still have a chance
as the longer run of this plays out is to understand and speak honestly and
prepare ourselves for this mind/body combination of symptoms that always
follows an armed conflict. And if we could do that honestly we could be better
prepared, we could prepare our people better before they go, and the society
would be more understanding and more honest in dealing with the problem
afterwards.
Q: Speaking as a public health person, is it crucial when you give a public
health message to give the truth?
A: Absolutely. My deepest conviction in medicine and public health is that
your job is to present the facts honestly and fully to the best of your ability
to understand them, and to communicate them, and also to present with them the
uncertainty that always surrounds them. There is a kind of mistaken perception
in society, it goes along with our deep wish for certainty, that the answers
are squared off and sandpapered at the edges. Life is not that way, and
medicine is not that way. So there is always uncertainty and your
responsibility as a public health official, or as an individual physician, is
to present to your community or to your patients, the best information that you
have, fully, and honestly, and completely. And at the same time convey what
uncertainties there are around that information. Again, that's not always a
very palatable message, either in the community sense in public health or in
the individual sense in clinical medicine. But if you don't do that, what are
you doing? How can you act as a physician, as a healer, or as a person
responsible for the health of a community unless you convey the information
fully and honestly.
Q: Can you talk about the media and how they covered the story from this time.
A: I think it varies. I think you had different segments if you will of the
media. You had, I think, a group in the media that were looking for
sensational aspects of -- what could be more sensational than this? U.S.
Soldiers Gassed in the Gulf, or, Mystery Illness Strikes Down American Military
After the War, or whatever. And there was a good deal of sensationalism. I
think there was some rather cynical self interest in some of the media
approach.
I think the media in general did a very poor job, both the print and the
electronic media, did a very poor job of covering what the medical facts and
what the scientific realities were. There was a kind of period where there was
the Disease of the Month. Anything that some Congressman could think up as
might be a cause of mystery illness would be in the headlines or on the
videotape as, The Cause of a Mystery Illness. There was not the kind of
coverage you would expect had you had science reporters. The story from the
beginning was not done by science reporters, or medical reporters. I think
that's a very important fact. It was treated as a political story rather than
a scientific or medical story. I think perhaps that's inevitable, but that's
what happened.
Q: Take something like the Life Magazine piece, what kinds of things do you
think as a public health officer when you see that?
A: I think the Life Magazine piece was both a charade and very cynically done.
We knew that a piece was in preparation. We talked to the people at Life
Magazine, told them what the scientific data showed, told them that within a
week or two of their proposed publication that there would be a scientific
journal article in the most prestigious medical journal in the country that
showed there was no evidence for congenital defects, asked them if not to delay
publication until the scientific article came out, to balance their story with
the information that was there. They went ahead and published in the most
sensationalistic way anyway. I think they did a great disservice to not only
the people who served in the Gulf, but to their families. I think they scared
a lot of people. There was no basis, no scientific factual basis for their
story. It was just a cover and a headline and I think represents the worst
kind of journalism.
Q: What was the antidote to this kind of journalism though? Where was the
other side being heard?
A: I don't think the other side was heard well and for that perhaps you can
criticize all of us, including the medical people. It was a difficult message
to get out. It was, as I've said, complex, it was not particularly palatable,
and there was some uncertainty to it. That's hard to portray as a message
against the kind of single-minded certainty of a sensationalistic easy answer.
In addition, messages from the government and messages from the Department of
Defense don't often have a great deal of credibility. I think, on any given
day, all other things being equal, John or Jane Q Citizen is going to believe
the worst rather than the more balanced account.
This is an enormous, this is probably the most significant public health
problem of our time, i.e., how you convey complicated probabilistic information
in a way that is acceptable and understandable by the public. I don't think we
did a particularly good job with this. I'm not trying to put the blame on the
side of the receiving public. It's not an area where public health does a
pretty good job in general. You can look at AIDS, you can look at
Legionnaires', you can look at any of the environmental threats to health, and
you see the same thing again and again. We need to learn to get much better at
this, both in terms of conveying scientific information and in marketing the
information in a palatable way. But in this case, in the Gulf War issue, it
was not at all successful.
Q: The DOD emerged from the Gulf War victorious....but then seemed to lose
their credibility so quickly and so totally. What do you think contributed to
that?
A: I think there's plenty of blame to go around. I think in part it rests on
the clumsiness with which the government, and the DOD in particular, tried to
convey, first of all concern, which needed to be conveyed. And second of all,
what the data was showing. I think part of the blame rests on those who
continued to whip up the issue. I think there were certainly those in the
media. There were pseudo scientists. There were individual members of
Congress who just would dredge up the most fantastic hypotheses and
explanations without, absolutely without a shred of what I would call
acceptable scientific rationale behind them, and throw them out there and blow
them up in headlines and in video footage of GIs in gas masks. If I have seen
once I have seen 50 times that same segment of soldiers in MOPP gear, in
chemical protective gear, entering a slit trench, and it's always shown in
absolutely no context. Just whenever there's a Gulf War issue you'll see that
same piece of footage.
So there were those in the media. There were those who had axes to grind for
their own scientific research, and I think, most regrettably, there were
individual Congressmen, members of Congress, who just kept blowing this thing
up, I think created a great deal of anxiety, and also made it much harder to
get the message out. And then there were the vets. These people, the 20,000,
60,000, whatever number you want to use. They were hurting. They were ill.
They were worried about it. They were anxious about what the future of their
health was. And they also wanted answers, as we all do. They wanted answers
that were most acceptable to them. They wanted medical labels. I'm the same
way. When I have something that hurts I want a medical label on it and
hopefully I want a direct and complete therapy that will cure that symptom.
And in this case, especially with this most important combination of
psychological stressors and physical symptoms, this was a message that was not,
and is not today, palatable to the vets. They don't want to hear that. You
have to understand that.
But at the same time you also have to recognize it as a position that makes
it more difficult, both for them and for the rest of society. If we could only
find a way to get all of us, not just those who are suffering from the
symptoms, but the entire -- to accept that message, to understand that. When
the Presidential Advisory Committee brought out this issue, as I think they
were very correct to do, of the importance of psychological stress in this
whole equation, they were shouted down. There was a program from the "Wisdom"
of members of Congress and in the media. Why? Why is it so difficult to
accept the message that, when you put young Americans, or anyone, in a
situation that is uncomfortable, dangerous, and uncertain, that a number of
those people come back from that situation with a combination of physical
symptoms and psychological symptoms. I think we all know that. We look at
ourselves in the mirror, everyone of us knows that and understands that in our
lives. When you wake up in the morning and don't feel well and don't want to
go to work because you have something unpleasant that's going to happen to you
at work that day. You understand this combination of physical symptoms,
whether it's sleeplessness or depression, or pains in your joints, or pains in
your stomach, and what's going on in your psyche. So we all know this, but we
can't face -- it's kind of the last taboo of being unable to face the truth
about this. And it's very sad because, if there is an area where we need to do
a better job of protecting our young people when they go in harm's way, and
they will again, this is the area that we need to make progress on. And it's
very difficult when we consciously blind ourselves from talking about it and
facing it and understanding it.
Q: There's been quite a lot of messengers it seems to me in this story.
There's been five blue ribbon panels, various studies. Pretty much all the
messengers, present a fairly consistent message, I'm talking about the
scientific messengers, and they've all tended to be treated the same way have
they? Am I correct?
A: I think so. That's, but I think that's the nature of the issue. Let's talk
about both sides of it. One is the consistency of the message. There's an old
saying in medicine that says: When you hear hoofbeats in the street and you
look out the window expect to see horses and not unicorns. As the data has
piled up and piled up it's pretty clear that what we're look at are horses in
this situation. There is no unicorn here. There is no mystery illness. That
has been a consistent message in all the groups that have looked carefully and
scientifically at this.
Another problem that we have as scientists and public health people however,
is that we live by probabilities. And we are always reluctant, and for good
reason, to say something is certain when we know that there's some degree, some
small degree of uncertainty attached to it.
Now the rest of the world, the media and the public, and Congress, they live
by certainties. They like to have things clearly black and white, yes or no,
up or down. And we need to get better in my profession, we're not very good,
at conveying those uncertainties to people. So when the scientist says, this
was very clearly evident in the early days of the AIDS epidemic: "No, AIDS is
only transmitted through these ways and not by those. 'Are you sure doctor?'
Well, I'm almost certain, or it is highly probable." But I mean, how many
times have you heard people like me say, "It's almost certain, or We're quite
sure, or It's highly probable." Well when the public or the media hear that,
what they hear is the uncertainty side, and they focus on that as an indication
that this is not sure or not true or more than uncertain.
And of course, when people have reasons for wanting to hear the uncertainty,
either because they can't face the reality of the psychological/physical
symptoms combination, or because they want to make headlines the next day, then
it's easy for them to discredit the argument.
Q: What about Congress. Congress has been very active on this issue haven't
they? They've held a whole lot of hearings, dozens of hearings.
A: Congress has been enormously active on this issue, and I think they should
be. This has been an issue that affects a significant number of people who
served their country, directly. It's an issue that bears on very large
questions of the government and the public and our military establishment. So
this is an area where Congress should have been and has been very active. My
concern is not with that. My concern has been with the way individual members
have reacted to the issue, which is without a sense of responsibility to what
the data shows, and what the data doesn't show.
Q: What's it been like appearing before them?
A: It's like -- it always is, appearing before them, you know, Congressional
hearings are 90% theater and 10% a judicious examination of a situation. That
really is no different in the Gulf War issue than it has been, for me at least,
in any other setting.
Q: But how was it that you became identified for them as a bogeyman to go
after? Why you?
A: Well I think I was the person who was doing something in the department. I
think, particularly in 1994 and 1995, the department really allowed itself to
see this as a medical issue and we did the best we could. I think we did good
work. I think others have validated that we did good work, but it was only a
part of the issue. It was the medical and clinical and scientific side of
this. So I was the person that the department sent up to testify, and I went
up there and said what I had to say. And if that drew fire, that's just the
way it is.
Q: In many ways this is a battle in the public mind, or in the Congressional,
the media mind, between stress as an explanation, or part of the explanation,
and chemicals. Talk about why so many people seem to be so ready to believe
that, of all the things that might have caused this phenomena, chemicals was
the one.
A: Well chemical agents are mysterious, they're frightening, they're
threatening, as well they should be. In my own view the biological and
chemical threat in the military threat of the future. And in a sort of
perverse way there's a positive aspect to the Gulf War illnesses controversy
about this, because it has focused people's attention and people's interest,
inside the Pentagon and in the country in general on this issue. That's not
entirely a bad thing. But it's because the chemical threat is so focused,
frightening, and unknown, that I think people have grasped upon it, to the
exclusion of what the, on the medical side, what the evidence shows. It also
became involved in issues of government conspiracy, of silence, hiding data,
not protecting our people, and the rest. And of course, that's very appealing.
It's got a lot of shock value in the media and it has a great appeal
politically. It's a way to point a finger at a villain.
Q: Do you think the Department of Defense was too quick to dismiss chemical
weapons from the point of view of exposure? That part of the problem they got
into later was that they just were too dismissive of this as a possibility.
A: It's hard for me to say. I will say, and I have tremendous admiration for
the senior military people I worked with in the Pentagon. I came there as
someone without a military background and I have tremendous admiration for
their intellect and for their commitment. So I'm not coming from a sort of
military bashing position on this. But it is clear that the department in
general and the military leadership in particular, did not want, early on, to
see this issue as an important issue for them in a kind of public and policy
sense. They wanted to see it as a medical issue. And we, the medical folks,
were willing to pick up the ball and run with it because we felt that was a
responsibility that we had, to take care of our people and understand what was
going on. So we did that and they were content to let us do that.
Q: The problem is, from a medical issue, is you're kind of dependent on them
for information about exposure aren't you?
A: That's what I was about to say. I don't have a clear judgment, a clear
understanding of how the operational intelligence and military information,
we're really it all lay, and how vigorous the pursuit of those issues was in
the rest of the department. It's hard for me to say. There was not a great
deal of open communication between those areas. We kind of did what we were
able to do and needed to do.
Q: You needed certain information to assess this as a risk factor, didn't
you?
A: Yes and no. Remember what I said, we began with the patients. We began
with the clinical physical and laboratory examination of patients to see where
that would lead us. We could do that to a very significant extent without a
lot of risk and exposure information because it would lead us back there, if it
did, which, in truth it did not. But we did work very much on our own on this
one.
Q: The issue in 1996 became an issue about exposure -- became a very important
one.
A: With Khamisiyah?
Q: With Khamisiyah right. Now, talk a bit about that. You'd been
communicating your message, an unpopular message, for several years before
Congress and the media and so forth. Part of the message is that chemical
weapons don't seem to be indicated, partly because of clinical effects, but we
don't seem to have much data of confirmed exposures anyway. And suddenly this
thing comes out. How did you find out about it?
A: I found out about it through the process that surfaced it within the
department. It would be an understatement to say that I was surprised. It
would be an understatement to say that I was embarrassed for the department and
for ourselves. This, the Khamisiyah issue just destroyed any credibility the
Department had, it -- I'll tell you what it did for us on the medical side,
immediately that this came out, we went back and looked at all our clinical --
I mean, there's the best example of what a bombshell, no pun intended, this
was.
We then went back and looked at all the clinical data we had amassed, in
ignorance of Khamisiyah to see if there was anything either geographically or
temporally or symptomatically from the Khamisiyah experience that might change
how we looked at, how we interpreted the data. In fact I went back to the
National Academy of Sciences Group, the Institute of Medicine Group, and I said
to them: Look, we asked you to review our clinical findings and our clinical
process, which they had been very supportive of, and very positive about. We
asked you to do that in ignorance of Khamisiyah, and in ignorance of an
awareness that there well might have been actual chemical exposure. Go back
now and look at our process and our data again, with the other hat on. That
now we know there's a probability, a significant probability that there was
some exposure, to some level, significant or not, of a chemical agent. Look at
it again and tell us if we should do something different. Indeed they did not.
They looked at it but they didn't really see that the Khamisiyah revelation
invalidated anything we'd done. But it threw everything into further
uncertainty, and caused total loss of public credibility.
Q: Now of course, the veterans would say, 'Well we were telling you all along
about our individual experiences in the war when we thought chemicals were
there and you didn't take us seriously, and now this shows, we told you so.' --
that's what they must have thought, with Khamisiyah?
A: Well I don't know what you mean by, You didn't take us seriously --
Q: Not on the medical side but on the exposure side.
A: -- docs and nurses that had taken care of these people and worked the
evaluation program take them very seriously. That's their job to take them
seriously. I think another lesson to be learned out of this is my view, in
the Pentagon, not an open enough communication between the operational and
intelligence and medical side. I believe that our military cares deeply and
does a hell of a good job taking care of its people, from the senior line
commanders down. But at the same time there is a compartmentalization and a
separation between information flow, thinking flow, etc, from the medical side
to the war fighters side. And I think one of the things we should have learned
out of this Gulf War illness experience is how important it is, both for
current and for problems that are going to turn up in the future in any
instance, to have a much more -- I mean, if the medical people had known about
Khamisiyah in 1994, 1993, or even 1992, there probably would have been a
different response.
If those memos that came in and were kind of dust binned, about Khamisiyah
over on the Intel side, because they weren't thought be have been very
significant, if one of my predecessors or somebody in the medical chain had
seen that information it would have had a very different level of significance
to a person in the medical arena.
So that's something I think we can use to improve our system.
Q: After Khamisiyah did it seem like it would be very difficult for you to do
your job?
A: No. I don't think -- Khamisiyah didn't make it any more difficult,
except in the sense that -- because it really shredded the Department's
credibility across the board.
In fact, in one way it may have made it easier. I think that most of the
groups who looked seriously at what's been done on the medical side have said
that we did a pretty good job. And with Khamisiyah, much of the focus shifted
away from the medical issues to the kind of intelligence and operational
issues. Before Khamisiyah I was having irrational discussions with Congressmen
about whether a certain vaccine or a certain infectious agent might have come
down from the moon and caused mystery illness. After Khamisiyah those same
Congressmen wanted to know from the other parts of the Department, What did
they know and when did they know it, etc. etc.
After Khamisiyah it began to shift toward, Where were the missing
intelligence logs and, How come nobody knew that there had been an exposure,
etc. etc. I think some of the media got caught in that divide in that, for
example, New York Times began their most sensational coverage with a focus on
the illnesses and the medical issue and, in my view, did some quite
irresponsible reporting and quite unfactual reporting about what was or was not
known about the medical side of this.
But both as the weight of the medical evidence solidified and after Khamisiyah
their coverage shifted very much toward more kind of military political and
information political aspects of this. Same thing in the Congress. Three or
four years ago, as I said, you had lots of questions, not often with a lot of
scientific intelligence, or any kind of intelligence behind them, about causes
of illness. That's not where the main focus is any more. I think that's in
part because, on the medical side we've done our work. But it's also in part
because the focus has kind of shifted to a paper conspiracy, information
conspiracy kinds of issues.
Q: I want to move on to the issue of how science operates in a highly
politicized area like this, because there's a great interest in getting
answers, right? And you've mentioned the panels and your own research you
funded. But this area also attracted a number of scientists who were more
sympathetic, who had theories which did, which were more acceptable, didn't it?
I'm talking now about the fringes, right?
A: Now I'm going to talk in this unfortunate way that scientists and medical
people talk. I'm going to talk about uncertainty. And clearly the book is not
closed on all of this. The best example is this issue of the effects of low
level exposure to chemical agents.
The truth is that we don't have firm iron-clad complete, New England Journal
of Medicine publishable data which show that there cannot be long term effects
of low level exposure. The truth is that everything that we know and is
accepted according to the rules or the way we know things in science and
medicine points us away from that. That there is not, or are not, long term
effects of low level exposure, but all the edges aren't closed off. So the
scientists says, We can't be certain. The public hears, Oh Oh, maybe there are
long term effects. And it is important to continue to do the research. To
continue to push the thing forward so that you get greater and greater
certainty.
The question becomes, how you do that? And which of all the many questions
you could ask, and in the practical sense, which of all the research you could
fund, a lot of questions out there. Which do you chose to do, and how do you
chose to do that?
Now -- our society in the United States has worked out what I believe,
painfully and over decades, the best, the best ground rules for which research
we fund and which research we don't fund. Which questions we put resources to
to answer, and which we don't. And we have a system of peer review and a
system of the way research is funded, exemplified by the National Institutes of
Health, that has its problems, but is by far, by far the best way to do this.
Because it removes nepotism. It removes patronage. It requires the person who
is asked for resources to do research, to jump through hoops set up by his or
her peers. Undoubtedly with that we probably miss asking some good questions
in our larger research arena. But at the end of the day it is the most
efficient and the most honest way of proceeding with research. This is
something that is, I mean it's right next to the heart of everybody who is in
science and medicine.
What happens when a public health issue is politicized, and it happens in all
politicized issues, but it's been sharper in the Gulf War issue than any issue
that I know of in my 35 years or so in this business, is that those rules are
broken. And that, either because of sensationalism or because of political
patronage, pure and simple, naked and pure and simple, the political process
intrudes itself into the scientific research peer review process and says, Thou
shalt fund this research, or that research and not this research. That is a
very dangerous thing to happen.
Q: Why?
A: Well, if it's true that science is too important to be left to the
scientists, I understand that and I believe that deeply, it's also true that
science has got to be always played by the rules of science. Whether you get
$4 million of federal money to do research on a bizarre theory of Gulf War
illnesses or not, depends on who's Congressional district you live in. That
should never be the case. What should be the case is whether you get $4
million of federal money to do research on some bizarre theory of Gulf War
illnesses should depend on your playing by the rules of peer review, playing by
the very strict rules of protection of human subjects in research, etc.
We have a whole system. It's ponderous, but it works better than any country
in the world. And it has -- I mean, look at the results in American medical,
biomedical research. The real reason that we're so strong in the world, and
still the leader in the world of biomedical research is not because of our
wealth or resources. The real reason is this very delicate and rigid, one
might say, system that requires research to conform to certain criteria. When
that's broken because one person lives in somebody's Congressional district or
another person has a sensational idea that gets blown up in the media and then
picked up by the Congress, and there's an intrusion into that process, and peer
review is broken and human subject protection requirements are broken, that's
very dangerous, not only for the Gulf War issue, but for all issues. If you do
it here, why can't you do it anywhere?
Q: Can you give me an example of how it might have been broken here?
A: There have been several. There have been several. There has been
insistence on funding, written into the Congress -- written into Department of
Defense appropriation acts, has been direction for the Department to fund
particular research. It doesn't belong there. It doesn't belong there. What
should be written into the DOD legislation in the year, perfectly
appropriately, is for the Department to spend money, or how much money, or to
go into these areas. That's Congress's job. But to specify research,
particularly when that research doesn't conform to other standard criteria to
meet the rigors of peer review and human subject protection, it really is a
perversion of our whole research system.
Q: Is junk science being funded?
A: Yes. Junk science is being funded. Good science is being funded as well.
I don't want to leave that impression. That's very important. There's been a
lot of very good research funded by DOD and VA and the Public Health Service,
CDC, very good research.
The other issue here is of course that junk science often promises a quick
answer. We've got the magic bullet. Real science often is much more aware of
how complicated and time consuming it is. That doesn't often generate
headlines. That doesn't grab the kind of sensational attention. So that's
another part of this dynamic.
There's a lot of good research that's being funded and I think it's going to
lead to some real progress in a number of areas. But there's also some junk
science being funded. There's some junk science being directed.
Q: I spoke with Congressmen Shays and Sanders the other day, and they said the
biomedical communities had six years to sort this problem out. They haven't
solved it. There are these guys who think they can solve it. Why shouldn't we
fund them?
A: Well one could say that Congress has had 175 years to sort out some of their
problems and they haven't got -- I mean, that's a ridiculous argument. Hard
problems are hard. You can't make them easier by plucking solutions out of the
air, particularly when there is either a special interest or no rationale, a
special interest rationale or no rationale to those solutions.
Q: Talk also about the dangers from the human subjects thing, of say, promising
a cure for something. There are some people here who are claiming that
symptoms, and even major diseases, can be cured with antibiotics. Is that a
troubling phenomena?
A: There's two issues there on the human protection side. First of all, we
have rules, and it's a good thing we have -- and we have seen what's happened
in our society, including in some of the history of the DOD. What happens when
you break those rules. We have rules about informed consent. We have rules
about blinding investigators so that they don't, that they're not the ones who
judge the efficacy of the experimental medications or regimes that are given.
When you break those, again, you pervert the process. Then there's a kind of
indirect harm. The indirect harm is the false hope harm, the snake oil harm,
and both the disillusionment that causes, and the lack of credibility in the
medical system that causes, and also the opportunity cost.
If people think, let's go back to what I was saying before, if there is a
great resistance to accepting that my symptoms are related between
psychological and physical components, if I'm resistent to believe that in the
first place and you come to me and say, I've got this little bottle of magic
oil here and if you rub it on you'll be better. First of all, I am likely to
like that approach rather than the more hard and complex and difficult one
which I resist anyway. But in taking your snake oil I make it even harder for
you, as my physician, to do the difficult and time consuming and painful work
with me to reach an acceptance of what's really going on. So there's a kind of
opportunity cost in the way that economists would face it.
Q: ...The other argument from Congress that I heard this week was that, Yes,
sure there've been five blue ribbon panels look at this. But scientists have
been wrong in the past. So why do I have to listen to them?
A: If my grandmother had wheels she'd be a motorcycle. Journalists and
politicians do not understand probabilities. That is a very big problem.
Scientists have been wrong in the past and they will be wrong in the future
but whether they are right or wrong on this particular instance depends -- the
whole system we have for judging fact from fiction, depends on a series of
agreed-upon rules. Rules of probability, rules of evidence, rules of
methodology, etc. And you cannot say, I mean, it is idiocy to say that because
they've been wrong in the past, and because they will be wrong in the future,
that they're wrong this time so we ought to ignore it.
It takes us back to our discussion about risk communication, neither from your
side of the business, the media side of the business, or the public health, my
side of the business, we don't know how -- we are not able to credibly,
convincingly, simply, directly, communicate probabilities to people, and
relative risks to people. We don't know how to do that well. If we did, a lot
of these problems would be much smaller.
Q: The President's Advisory Committee is going to give its final report in a
few days. I want you to talk about the influence in this debate that these
panels have had, the basically, the scientific message. How effective has this
message been in getting out?
A: I think marginal effectiveness. I think not only ourselves and the DOD, but
also all the scientific groups and panels are really swimming upstream on this
one. That doesn't sound like I'm an optimist. But I am an optimist. I think
the real value is, both from our work on the medical side in the Department,
from the Presidential Advisory Committee, going way back to Josh Letterberg's
group, the OIM and the National Academy of Sciences groups, eventually this
will all sort out. Eventually those self-interested loud voices of
sensationalism will pass away. Eventually people will look back at this, three
years, five years from now and say-- what did we learn from this? And they
will then have that scientific and medical evidence to look at as the basis for
coming to an understanding of this.
So I am an optimist on this one. I think, though in the short run it's hurt
us on this issue that I've spoken about several times and I care very much
about, why can't we face the issue of psychological and physical combinations
and psychological stresses in combat? While we've done ourselves some damage
in the short run on that, by all this hype, and media hype, and political
huburus(ph) on it, in the long run we'll gain some wisdom from it and we'll be
better off than we can otherwise. That's why you keep doing the work,
otherwise, you know, if you only did it for the short run you wouldn't do it.
I think eventually it will sort of all wash out and the scientific and medical
evidence will be important in helping people realize what did happen and what
didn't happen.
Also eventually, we will understand better the mistakes that we all made,
including the ones that we've talked about, not being quick enough off the
mark, not recognizing the importance of this as a military and not just a
medical issue, etc.
Q: What about individual veterans who continue to believe their illnesses is
Gulf related? What's the sort of prognosis, you'd say, speaking as a physician
now? Do you think it's likely they will get closure on this?
A: I think some will and some won't. I -- the people I work with in the
Pentagon, the doctors and the nurses, the medical people, are first rate, and
they care about their patients. They are connected to their patients in a way
that civilian medical people are not. I think those individuals, whether they
have purely physical symptoms or purely psychological symptoms, or
combinations, those individuals who can work through that have a responsive
medical system to work it through with. Those who resist it and can't probably
won't get closure on this. I think just as post every conflict that we've had,
there will be permanent casualties of the type that I'm talking about. But
many will recover. I think many have recovered. My understanding, it's
anecdotal, but my understanding is that the result of the clinical programs has
been very strongly that people feel better. That the vets who came into the
program and got the diagnostic and the therapeutic -- and active duty people
got the therapeutic and diagnostic work done, the large majority of them feel
better. Many perhaps are totally relieved. Many perhaps are partially
relieved. But I think many will reach closure on this, yes. And you know, if
those who keep hyping the issue illogically, don't get me wrong, I'm not
against -- I mean I'm very much for working the issue in a logical and
appropriate way, but those who keep inflaming it over their own hobbyhorse, if
they would get off that case a lot of people would get better faster.
Q: Is there anything personally you would do differently -- you were criticized
for being too blunt, too direct, not showing enough empathy. Is there anything
you'd do differently?
A: You know, I'm originally a pediatrician and pediatricians are not notably
hard nosed people. I guess I'm a hard nosed guy. I tend to believe that the
way you can be most empathetic with people is to be straight with people. That
being direct and clear and honest is not being unempathetic. Perhaps it's only
one of my fallibilities that I don't make that case well enough. But I do the
best I can.
Q: Will this happen again?
A: Yes. It will happen again. Will it happen again on this scale? Will there
be a next mystery illness? I don't know. But this happens every time, every
time, civilian crisis workers go into a bomb explosion in Oklahoma City.
There's some very interesting work being done on the firemen and life support
workers, police and fire emergency workers in the aftermath of the Oklahoma
City bombing. We'll be in combat again. We'll send out kids overseas again.
How much better it would be if the moms and dads would understand when their
kids go overseas and come back how important the psychological stresses are and
how important it is to deal with that openly and honestly, and empathetically
and sincerely, and not hide it away in the closet. That's the real thing we've
got to take out of the -- the real lesson we've got to take out of this is to
do better next time. Sure there'll be a next time.
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