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Matt Puglisi
interviews
Spokesman for the American Legion.  A Marine Second Lieutenant, Puglisi was an artillery officer attached to an infantry company during the Gulf War.  Puglisi  analyzes how the media covered this story, what has fueled the

Q: People say the Gulf War was over very quickly -- it was kind of a low stress war. But there must have been a buildup to it.....?

A: Yes. Folks looking backwards at the outcome of the war--fast, one-sided-- forget about the buildup and the pressure to get ready in a relatively short period of time, a huge number of people with a lot of equipment. It was a pretty stressful time leading up to the to the war. The fear of use of chemical weapons, biological weapons, the size of the Iraqi army, that was a really pretty stressful. Now it didn't turn out the way we thought it would, but that doesn't take away the pressures that were on the troops to get ready and actually step up to the plate and fight that battle.

 

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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