Q: How has your health been since you've been back?
A: It's been fine. No problems. I've had a child since the war --
well, the wife had the child-- but regardless everyone's doin' fine.
Q: What are the concerns for an organization like the American Legion
when you start to hear stories about clusters of illness in the Gulf War
veteran population?
A: I'm very proud of how the American Legion listened to the veterans
very early on after the war and took very seriously the reports that there were
clusters of illness amongst Gulf War veterans and the organization moved very
quickly to try to understand from the veterans what was going on, raise these
concerns with our federal government and with members of Congress and push for
investigations to occur to look at these things and see what was happenings.
And we did that really from 1991 on.
Q: So the issue initially was just to get it taken seriously?
A: Get it taken seriously and get it investigated. It was difficult to
understand the reports of clusters in Pennsylvania and Indiana, reports of
clusters of birth defects in Mississippi. It was tough to put these things
together, but fortunately we had Gulf War veterans on staff and we had Gulf War
veterans who had assumed leadership roles within our organization. So we not
only were just hearing these things in the media, we actually had Gulf War
veterans who could talk to us directly about what was going on.
Q: Did you see it at the beginning that it was going to be
complicated?
A: Actually in the beginning I think that we looked at it much as others
did. The Centers for Disease Control approached this as an outbreak and that's
how it was reported to them. So it seemed like it was indeed a Gulf War
Syndrome, that it was an infectious disease or something unique to the Gulf,
something that was contagious and homogenous. That's what it appeared to be at
first. We've since learned that it's much much more complex than that, but I
don't think we were any smarter than anybody else back in the early 1990s after
the war.
Q: We live in a culture where rumors can spread very easily on the
Internet, through the media and so forth--did you see at the beginning that
there might be aspects of this which would get out of hand?
A: Oh, clearly. There were a lot of reckless statements being made
about these illnesses from early on that took on a life of their own and that's
survived today; they're not helpful to the veterans, they frighten those who
are in good health, and they frighten those who suffer from poor health as
well. Yeah, we see our role as helping the veterans understand what's known
about the illnesses and pushing the federal government to take them seriously
and investigate them, but certainly not to perpetuate these theories and these
conspiracy theories that have no basis in fact and no evidence to back them
up.
Q: Let's look at some of the theories and claims.... Claims early on
were made that people were dying in large numbers, people were getting diseases
ranging from heart attacks to Lou Gehrig's disease, babies were being born
deformed. Could you address those?
A: Actually, when I was first appointed to this position two years ago,
those were some of the things that I had at the top of my agenda, the birth
defects and the reported deaths. The two worst outcomes you could imagine
from service in the Gulf.
And what we've found is that we haven't seen an increase in birth defects in
the Gulf War veterans population, we haven't seen an increase in death at least
from internal causes. We've been pretty confident in the investigations that
have occurred so far into those things. But at the same time, we have to
approach those things with some caution. We don't want to alarm people, we
certainly don't want to make reckless statements about what's not known about
those two things -- but in the birth defects there's still some finer, more
sophisticated studies into some rare birth defects that have occurred, like
golden Haer (sp?) syndrome, that hasn't been addressed fully yet . And perhaps
scientists feel very confident that there's no association between that disease
and service in the Gulf, but many veterans are not. And our role is not to
tell veterans about something that isn't true, but is to insure that all their
questions are answered fully.
Q: Part of the problem is that once this thing takes on a life of its
own, as you say, there's a question of trust, of credibility and on where
you're going to find reliable information. Early on--in Congress and in the
media--there were allegations that the Dept of Defense, the CIA, some of these
institutions which emerged victorious from the war had not told the truth and
so forth.
A: There's an undercurrent of mistrust in the United States towards the
federal government, people with Ph.D.'s people with high school diplomas, many
of them share these beliefs and these suspicions of the federal government and
and we can talk about all the reasons why. That's strike one against the
federal government.
Strike two is when Gulf War veterans started going to clinics....There's an
undercurrent of mistrust in the United States, in many of its citizens against
the federal government. They don't trust the federal government and there are
many reasons why that's occurred and we can talk about many of them over the
last several decades since the Second World War, or regardless, this is
something that we have to confront. That's strike one against the
government.
Strike two is that when said Gulf War veterans went to clinics and hospitals
run by the Dept of Defense and Veterans Affairs, they weren't met with open
arms by many doctors, many doctors uh thought that they understood readily what
was occurring with these veterans. It was a short war, this must be mental
illness or post-traumatic stress disorder, not that many people were shot or
stepped on land mines so this was -- this is what must be occurring.
There's a stigma against mental illness in this country as well. Strike two
against the federal government.
And then, when veterans complained about being exposed to chemical weapons in
the Gulf--seeing them, the alarms going off, reporting symptoms consistent with
exposure to chemical weapons--these claims were not investigated seriously or
with any sort of vigor at all by the Dept of Defense, strike three. When after
all that, these agencies now are tasked with investigating Gulf War Syndrome,
do you think veterans are gonna believe the kinds of conclusions they come up
with? Absolutely not.
We see our role trying to be sophisticated in our approach. We have a
medical consultant and we have other medical experts that we consult with and
we oversee the federal government's efforts with fine detail. We try to ensure
that the studies that they're funding are designed well so that we can be
confident in their conclusions and if they're not, then we can point out their
weaknesses and push the government to approach these questions in a different
manner.
The outcome is that we want to insure that we have the best information
derived in a thoughtful way to help educate Gulf War veterans. What we don't
want is approaching rumors and conspiracy theories in an improper way, in a
haphazard way and coming up with information that's not gonna alleviate
veterans' fears.
Q: Some veterans not only distrust the DOD and the CIA, but have
extended their mistrust to bodies like the President's Advisory Committee.
A: Right. The Presidential Advisory Committee has some members on it
who were very involved in the fight with Agent Orange. Dr. Philip Landrigan a
member of the Presidential Advisory Committee, chaired the American Legion's
Scientific Panel and investigated the agent orange for the American Legion.
There are veterans on the committee who are very committed to understanding
what was going on with the Gulf War illnesses.
Many so-called veterans advocates criticize the Presidential Advisory
Committee either because in some cases they didn't understand how they were
going about their work or they were critical of some of the scientific
conclusions that the committee came up with. And if you read their report very
carefully, they clearly pointed out that based on what they knew at that time
in the published literature, this is what they think and that didn't mean that
that conclusion couldn't change as more scientific studies were finished and
those findings came out.
So you know this mistrust was spread liberally around and that's just not a
smart thing to do and again your average Gulf War veteran, average one--not the
ones you see on TV and on the radio and written about in newspapers--the
average one isn't focused on what the national media is focused on. They're
not focused on what the Presidential Advisory Committee has been focused on
lately. If you go out and ask them what are you worried about, they're worried
about VA, they're worried about health care, they're worried about getting
better. If they're disabled, they're worried about disability compensation.
They're not worried about who shot John and all these things that are an
obsession with some folks inside the beltway. They're concerned about how
they're gonna pay their bills and if they're sick how are they gonna get
better.
So the national media keeps talking in many ways to folks who talk about the
Presidential Advisory Committee and the Dept of Defense and CIA. That's not
what the veterans are talking about. That's not what they're concerned
about.
Q: So are you saying that the average veteran has a fairly moderate view
on this?
A: Your average veteran is upset with the federal government as they
interact with it. I will give you an example of how we know this. We've
helped over 25,000 Gulf War veterans file disability claims with the Dept of
Veterans Affairs. We've held hundreds of meetings and forums across the
country on various topics and usually on the agenda are Gulf War veterans.
I've attended dozens of meetings around the country with Gulf War veterans
there, as many as two to a couple of hundred and most of them, the vast
majority, don't believe what the Dept of Defense is saying, but their anger is
directed at the experience they had at the Dept of Veterans Affairs. Their
frustration is that they're just not well since they were in the Gulf and they
went to VA and they can't get better. That's what they're upset about and
that's what we should really focus our energy on.
Q: Are most of them convinced they've been poisoned by chemical
weapons?
A: I don't know. I think many are and while we haven't done any formal
survey of Gulf War veterans asking them what they think the causes of their
illnesses are, but I think it's safe to say that a great many are convinced
that chemical weapons are associated with their poor health. Now do they
believe that because of their experience in the Gulf? In many cases, probably.
I mean the alarms as we all know went off all the time, many times regardless
of what kind of chemical was in the air, whether it was vehicle exhaust or
maybe even the fine dust that was in the Gulf and many of these ideas that the
veterans have were reinforced by what the national media has been saying about
Gulf War illnesses.
Q: Talk about some of the problems of the exaggeration you were talking
before. What, for instance, might be the downside, public health effects of
somebody saying that people who served in the Gulf had a risk of having
deformed children?
A: The Dept of Veterans Affairs has reported that in that in one
epidemiology study they're conducting, in one health survey that's being
conducted, a majority of male Gulf War veterans responded that they've delayed
having children because of reports of excess birth defects in the Gulf War
veterans population. That -- that's a tremendous change in behavior and that's
been affected by these reports that there --
Q: What kind of reports? The media reports?
A: Sure, the media. I mean that's how most people get their information
and particularly pictures. You look at the Life Magazine article two years ago
and the impact it would have. I'm a Gulf War veteran, I'm in good health and
I've had a child since the Gulf War yet I had relatives copying that thing and
mailing it to me, very, very concerned about my daughter's health yet so far we
haven't found an excess in birth defects in the Gulf War veterans children's
population.
So should Gulf War veterans be concerned about their children's health?
Sure. You should always be concerned about your children's health from all the
different things that can happen to your children, but we just haven't found
the evidence yet and we're looking...
Q: Now the Presidential Advisory Committee, in common with some of the
other blue ribbon committees, have suggested that stress is a major
contributing factors. This has been a very unpopular conclusion as far as I
can tell. What's the American Legion's view on this?
A: We're a large organization and we have tens of thousands of Gulf War
veterans who are members and they all come at this issue whether they're well
or whether they're sick from different angles. Some you know look at different
things as the possible causes for Gulf War illnesses. Some of these veterans
have been diagnosed with post-traumatic stress disorder, some of them have been
diagnosed with mental illnesses and they're seeking care. So the last thing
I'm going to do is denigrate mental illness amongst veterans of any war. This
occurred after every war and they suffer from illnesses that have occurred to
warriors throughout history. So the American Legion is not in the business of
denigrating mental illness amongst Gulf War veterans.
But having said that, we're open and we encourage decision-makers to be open
to investigating all the possible causes of Gulf War illnesses. It may be
chemical weapons for some or all the vets, it may not be at all. Stress,
according to the Presidential Advisory Committee is an underlying factor and
animal studies looking at piridistigmine bromide, it's been shown to break the
blood barrier in rodents who are suffering from a lot of stress. Just makes
sense to include that on the table to ensure that you're understanding how
stress could affect different drugs, low-level chemical exposure and other
things. Rejecting stress out of hand, you're not doing the veterans a service
at all. Blaming it all on stress or dismissing Gulf War illnesses as just
stress is also the wrong thing to do. You've got take a balanced approach to
this.
Q: Now part of the problem you said for veterans getting service from
the VA is this notion of service connectedness of the complaint.
A: Right.
Q: Seems to me as an observer, a very complicated system. Talk me
through what's happened with this one because the regulations have been relaxed
considerably haven't they?
A: They have. It's evolved. VAs a huge monster and it's -- to its
credit people at VA have been thinking hard about how to approach compensation
for Gulf War veterans and there has been progress. A lot of it's been directed
by the Congress at this point. When several years ago VA was being pushed to
relax the rules for service connections it really took an act of Congress to
force VA's hand and push them to do that. Service connections for VA used to
be a pretty simple thing way back when. You were shot, you stepped on a mine,
you were run over by a tank or some other awful thing that occurred in combat
and you had a clear injury that you went to the battalion aid station with or
the ship's sick bay, you were treated, it was in your medical records and then
you could be compensated.
When you're talking about chemical exposure or investigational drugs that were
taken and no records were made in your medical records, that's something
altogether different, what's VA to do? The system it had was inadequate to
deal with something like that.
Q: Harder for the veteran to prove.
A: It's impossible for the veteran to prove. If the veteran was given a
pill in the Gulf and it wasn't recorded in their medical record, most of them
didn't even know what it was, most didn't keep diaries recording when they took
the pill and how often and -- etc. It's impossible for them to prove these
things. If they were exposed to environmental hazards -- and again there
weren't note-takers traveling with the troops recording everything they were
exposed to -- it's impossible for them to prove that they were exposed to these
things. So VA now presumes at least in theory that there were environmental
toxins in the Gulf and you may have some sort of illness related to that
exposure, but there isn't a clear connection yet and what we've seen is that
out of the over 10,000 veterans who have filed for this kind of compensation,
just about 1,000 have been granted compensation and of those --
Q: -- disability --
A: Right, for undiagnosed illnesses. And for those who have been
granted compensation only about half are actually receiving money every month
and of those the vast majority are receiving a pretty small amount.
The concern that we have and we've been seeing this occur, is that when Gulf
War veterans go to their general practitioner or to VA or to the Dept of
Defense and some of these doctors take a sort of traditional approach to their
patient, let's run some tests, they come up negative, I don't know what's wrong
or you must be mentally ill.
These veterans then leave, sometimes disgusted with the care they got and
they're gonna go somewhere else and there are many people out there ready,
willing and able to take them in and not always give them the proper kind of
care that they should get and not always telling them the kind of things that
they need to hear and our concern is that these veterans aren't gonna get
better by going to these people.
There are some people telling veterans to take antibiotics without any
evidence that that's gonna help them and our concern is not only is that not
ethical, but it's immoral and there are a lot of folks out there who aren't
even medical doctors or medical professionals who have all sorts of ideas about
how to treat Gulf War illnesses and what Gulf War veterans should do. Last I
heard, it was illegal to practice without a license in this country.
So we're concerned about that and the way we approach is not to attack these
people that do these things, but try to get at the veterans and let them know
what we've learned and let them know about information that we feel confident
about, to reassure them about which approach is best and what's not and at the
same time we've been trying to get the nation focused on what's happening at
the Dept of Veterans Affairs. I mean national media again is fascinated about
what's happening at the Dept of Defense, what they did when, who knows what,
who shot John, doesn't affect veterans, no. What -- the Pentagon can't pay
compensation to disabled Gulf War veterans. Pentagon doesn't offer health care
to veterans. It doesn't. Focusing our attention on the Pentagon is important
to understand what happened during the Gulf War, but if we want to help
veterans today, it's the wrong place to go.
Q: The role the media's played in this, you touched on the Life Magazine
story, have they helped or hindered in this story?
A: [sigh] That's a good question. Media's done both. The media has
helped because of its focus on the person and that helped the American people
understand what these numbers mean. When we say tens of thousands of Gulf War
veterans report poor health since the Gulf War, I mean, what do tens of
thousands mean? The media's been able to go in veterans' homes, talk to them
and their spouses about the impact the veterans' illnesses had on the family.
They've been able to talk to veterans who have had bad experiences at the Dept
of Veterans Affairs and put a face behind these numbers. That's been
important. The media, to its credit, took seriously the beliefs of the
veterans and maybe it wasn't backed up by science, but the veterans had a
strong set of beliefs and those are important things that leaders have to
address and they didn't for a long time. So that's where the media's helped.
Where the media hasn't helped and through no conscious effort on it's part,
but just sort of the nature of the media, its short attention span, its rush to
get things out there as quickly as possible, the turnover in the media either
in personnel and agencies or giving different people the story to do this week,
is that they haven't remembered what's been learned and many times the media
will interview so-called experts to react to a scientific study and that expert
will lambast it. Maybe it was a good one, maybe it had information that's
important to Gulf War veterans, but instead many national media outlets have
undermined the findings, put doubt in people's minds about what we've learned
and that's not doing a good thing for --
Q: Why? Because they're seeing it as a political story that requires
political balance?
A: The New York Times --which has some of the best medical reporters in
the nation-- hasn't been allowing them, hasn't encouraged their medical
reporters to cover this issue. Why not? They've been covering it from a
political angle with their Pentagon reporter. Doesn't help the nation
understand what's really important about Gulf War illnesses. Helps the nation
understand some of the in-fighting that's occurring in Washington, DC, but it
hasn't helped us understand what are veterans concerned about, what are the
medical complexities of this and how should we approach it.
Q: What about TV? 60 minutes? 20/20?
A: TV's got great images and great pictures but -- TV doesn't have the
time to educate the viewer about how sophisticated and complicated this is.
It's the Pentagon says this and they pick somebody to say, no, wrong. And
sometimes they pick somebody who isn't even a Gulf War veteran to express the
views of Gulf War veterans and again that's not really helping people
understand what's occurring with Gulf War illnesses.
If they really found that average Gulf War vet, that average Gulf War vet
would rail about how poor the care was at VA long before they would bring up
the Dept of Defense. And that's not to let the Dept of Defense off the hook.
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