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 Well, there are many different
meanings, but I think what many people mean is a particular complex
of signs and symptoms of ill health that are believed to occur
together in individuals who have adverse health effects from the
Gulf War service.
 I think we are looking at the
complex of reported symptoms, rashes, joint and muscle pain, fatigue,
diarrhea, gastrointestinal disorders, memory loss problems, headaches,
irritability, depression, and so on, that have been complained
of by many, many Gulf War veterans both to the Department of Defense
and the Department of Veterans Affairs and during the Senate
Banking Committee investigation.
There is, to my knowledge, no
persuasive story of that type at the present time. There is no
disease which has a separate diagnosis other than through this
cluster of symptoms which can be shown to explain a significant
proportion of this experience. There is no exposure for which
there is good scientific evidence that it plays an ideologic role.
In examining this issue and in
the very early days of the investigation that I conducted in the
Senate, we looked at the complex of symptoms not understanding
what the exposures might have been at the time. And we came to
the conclusion that if, in fact, there was a single cause, it
would have had to have been something that affected the neurological
processes of the body - in other words, those that affected multiple
systems and possibly have caused damage. What we are seeing today
in some of the diagnoses, we are seeing many or a number of vets
being diagnosed with autoimmune-neurologic disorders; other vets
complaining of sinus infections, evidence of chronic opportunistic
or endogenous infections. Those sorts of things could be indicative
of either an impaired immune system, on the one hand, or a damaged
immune system on the other. Now, we know that, for example, mustard
agent has effects on the immune system. Aflatoxins, which we know
that the Iraqis had weaponized, but we have no evidence that they
used, because we can't detect it, has effects on the central nervous
system and the immune system. And low levels of organophosphates,
such as the nerve agents, do have these kinds of effects. Whether
or not that is what is causing this problem, we don't know.
Well, this is not intended to
convey any disrespect to individuals who report their experience,
but it's a statement about scientific phenomenon that when you
are dealing with environmental exposures, which are difficult
to measure under the best of circumstances, when you have to rely
upon individual reports of exposure, it's typically the case that
you aren't able to glean reliable information about associations
between those exposures and disease. And I think particularly
in the case of some of the candidates that have been put forward
in the Gulf, where there is good evidence that the recall and
knowledge of exposures to different vaccines and to mosquito repellent
and other medical resources there was uneven, as well as the real
knowledge of the soldiers as to the levels of exposure to, for
example, smoke from the oil fires. So that's a statement about
a scientific problem, that if you can't measure the exposure variable,
you can't expect to gain much insight about its effect on health.
The whole issue
of self-reporting is, I think, kind of specious and problematic
because every time we go to the doctor to report flu-like symptoms
or a rash or whatever, more often than not the doctor doesn't
have any idea of what is wrong with us except that it may be something
that is going around. He will give us an antibiotic, hoping that
if it's a bacterial infection, that it will go away in 8 to 10
days or 7 to 10 days. If it's a viral infection, it will wear
itself out. But if we don't get better, then we go to specialists.
If the specialists can't figure out what is wrong with us, we
become research patients, and they continue to work until they
found out what is wrong with us. They won't sit there and say,
"Well, I'm sorry sir. We think that this is in your head."
That is where science and medicine are not being very well served
by the processes currently underway. What's happening to these
soldiers is that they go to the doctor, and, if the doctor cannot
explain what is wrong with them, then it's not something that
the doctor is lacking, not a failure in his ability, but it's immediately
interposed that it must be something wrong with the veterans. And that
is wrong.
I would like to make a
distinction between observation and diagnosis, that some symptoms
are observable, others are reported. So that if someone says,
"I feel tired," that's a personal report, which is not
measurable. If someone says, "I have a rash," the doctor
can examine the rash and can document the presence of the rash.
So I think that is one phenomenon. Can you actually observe
the health outcome or is it reported by the individual? That's
a different question than whether there is a diagnosis associated
with the complex of health problems that an individual reports.
I think the discussion about self-report is not about the diagnosis,
but it's about documentation of the presence and prevalence of
the health outcomes themselves.
Well, okay, most of the symptoms
that the veterans are complaining of are measurable; they are
quantifiable. Or at least we can do testing to rule out problems.
For example, chronic and severe headaches may be the result of
a psychological disorder. It also may be the result of a brain
tumor. It also may be the result of brain damage. What the veterans
deserve is the right to know: is there anything there?
The study establishes that in
the first two years after the war that there is no significant
increase in morbidity or mortality. The illnesses that we are
seeing in the veterans, for the most part, seem to be chronic illnesses.
If someone had HIV and it caused immune system problems, it's
rare for them to die within a two-year period right now, given
what we know about the illness. Is a morbidity and mortality
study in that short time-frame after whatever happened to them
happened to them valid? I would suggest probably not, but it
is an issue that we have to continue to revisit. The hospitalization
study, however, I think is an invalid study.
"What this study tended to do was
systematically exclude the very
soldiers who are likely to be ill."
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The military tends to discharge individuals who are not healthy.
People who are no longer well enough to continue to perform their
service are discharged from the military. Now this study did
not do follow-up on people who, for example, were discharged in
1992 or who left the military in 1992 because they were too sick,
couldn't do their PT (physical training) test or whatever. What
this study tended to do was systematically exclude the very soldiers
who are likely to be ill.
One thing to keep in mind is that
they both are studies of very large numbers of persons. So that
one thing they don't rule out is the possibility of a subgroup
of soldiers of sufficient size to be important from a public health
point of view, but not of sufficient size to drive up the mortality
or hospitalization rates for the cohort as a whole.
In fact, the mortality data were pretty compelling, if you looked
at them category by category. You really felt pretty confident
that it gave a very strong signal that there wasn't much going
on with the mortality, despite what I have said about the subgroups.
It would have to be an awfully small subgroup because there was
just no suggestion of any increase in mortality. But that is time-limited.
It's limited to that two or three year period. Also it is mortality.
It's only one of the questions. On the hospitalization study it's
true that this study was limited to those who remained in service.
The rationale for that really reflects the way medical care is
organized and delivered and record keeping is done in this country.
It was relatively easy for the Department of Defense to gather
data on the soldiers who remained in service, whereas to track
the individual soldiers who went into the private medical care
system in a myriad of different settings is a much more challenging
job and will never be done with the same level of completeness. It does, however,
leave open the question that what we are seeing is no increase
in hospitalization among those who remained on duty. Is there
a possibility that some soldiers who were ill were either discharged
or did not re-up and that that is an incomplete part of that story?
No, I wouldn't use the term.
I think, particularly, the term "invalid" is not an appropriate
term, I believe, for the mortality study. The mortality study
is absolutely valid, but it is limited. Its implications are
limited. Its scope is limited. The hospitalization study? I
would not use the term "invalid." It has a limitation,
which one must weigh, and places value then on pursuing information
about those who were discharged from service. So that one can
never fully be confident of the conclusions from that study without
some knowledge about those who were discharged.
Now, a scientist who looks at
that study is going to sit there and say, "Of course, this
cohort is only those people who are well enough to remain on active
duty." We don't even have any idea what that number is, based
on the study.
That's true. The reason I don't
regard it as such a devastating criticism is that there is really
not good evidence that, during periods of service, soldiers who
have this complex of health experiences that we are talking about
are more likely to leave service during their tour of duty.
If you follow this phenomenon,
you will also understand that prior to the summer of 1993, there
was a tremendous downward pressure on Gulf War vets in the active
military services not to come forward for two reasons. One is
that we were going through a period of down-sizing. The second
reason was that people who came forward and said they had sicknesses
related to their service in the Gulf were told that they had psychiatric
problems or they were malingerers. That was a record up to that
point. So, in addition to the systematic exclusion of individuals
as a result of discharge from the service, you also have this
structural, downward pressure on these veterans to prevent them
much more than somebody who wasn't in the Gulf who is prevented
from coming forward and saying, "Oh, I just don't feel good.
I am going to the sick hall."
Now I don't discount that study.
That study is an example of what we call in our report "outbreak
studies." An outbreak study is an investigation stimulated
by a report of what's believed to be a pattern of cluster of illness.
So the outbreak study was a frequently-used tool of CDC in tracking
infectious disease. It's frequently been used in environmental
work that people report that there is an increased frequency of
cancer near a dump site, and they head over there to try to figure
out what's going on. In this case the CDC study in Pennsylvania
that you are referring to is one of several actually. There was
a study by Dr. DeFraites in Indiana. There were
several of these studies in which a group of soldiers -
the seabees
[Navy engineers], in fact, are in an
instance of this - in which a particular group of soldiers
reported what seemed to be to the local physician, the physician
caring for them, a troubling pattern of illness. So in general,
it's a study design which has
really important limitations in terms of trying to find out what
is going on. For one thing, if you take a large population, there
are always going to be clusters of things. There is a lot of natural
variation in disease. Secondly,
one has to be aware that these are, again, self-reported complaints
in many instances among a group of individuals living together
in a community. So one asks the question: why is there this remarkably
high frequency of reporting these conditions in this group, but
there is not the systematic evidence in the cohort as a whole?
To me two concerns
about the CDC study in Pennsylvania were, first, that they were
tracking a cluster like the "Everready Bunny"
and, secondly, that this relies heavily on self-reports of a community
of soldiers. So you wonder to what degree there is that shared
perception or conclusion about what they're experiencing.
The issue of a natural variation
based on geographic location really isn't a legitimate issue since
what they compared here was deployed versus non-deployed soldiers
"The issue of a natural variation
based on geographic location
really isn't a legitimate issue."
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Tuite
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in the same geographic location. So we are not going to see that
kind of variation like we might see in one part of Massachusetts
versus another part of Massachusetts. These were people who were in the
same unit; some were deployed and some weren't. The issue of
the self-reporting was an issue that the CDC was very concerned
about at the end of Stage Two. Stage Three was intended to resolve
some of that. In a recent presentation to the Persian Gulf
Scientific Expert Panel in November of this year, they
said that Stage Three will, in fact, identify the fact that there
are clusters of symptoms that go beyond this self-reporting.
There was a strength of the study
that the first unit identified was identified through a report
of an excess of symptoms. They did then go to three other units
and did compare. So in those additional units, then, that criticism
of geographic variation is less relevant or less plausible as
an explanation. It is true that in those units, when they compared
the deployed to the non-deployed troops, they found an increased
reporting of those symptoms. A dilemma is, of course, those soldiers
know that they went to the Gulf. So again you are having self-
reported symptoms from two groups who, in a way, know their exposure
status and know the thrust of the investigation. So it has that
limitation of a potential for bias. I hope, in the end, that
will prove not to be an important issue. There is this overlay,
too, of access to medical care, which I think has confounded the
behavior and, really, the appropriate behavior of individuals.
Your access to medical care is contingent on whether you have
a condition which is secondary to your service in the Gulf War,
in some instances.
In the current charged political
environment, I think that neither the Department of Veterans Affairs
nor Department of Defense is competent to do the epidemiological
studies.
"In the current charged political environment,
I think that neither the Department of
Veterans Affairs nor Department of Defense is
competent to do the epidemiological studies."
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Tuite
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I really believe that right now, based on the information
that we have, there is grounds for a larger epidemiology to be
done by the Centers for Disease Control to find out if, in fact,
we do have a disease that can be identified as an official syndrome
listed in the medical catalog of diseases or if we are dealing
with isolated pockets of phenomena. But what we have seen so
far indicates that the Pentagon and the VA have agendas that are
more than pure science, and that the Centers for Disease Control
have shown that they are willing to do this as scientists in an
open and objective manner.
What we see and what is said in
the report of the committee of which I serve, the
Institute of Medicine committee, is that it would be important
to do good epidemiology. There are important epidemiologic questions
and ideologic questions that remain unanswered. There are also
plenty of opportunities to waste money here. I believe that a
considerable amount of public money has been used less than optimally
in an effort to track this down. So what we recommend in our
report is that proposals for epidemiologic studies in this setting
be subject to peer review and that they meet the standards of
good science.
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