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Dr. Stephen Joseph
interview

Q: So, when you began on this, what's this story look like? How much of a problem is it?

A: When I got to the department in early 1994 issues were just coming to sort of public visibility and consciousness. And there really wasn't much going on in the department. The important thing from my perspective was that we get started where you ought to start, which was with the patients. And to begin to try medically to begin to understand what was going on and so we began a clinical evaluation program working with the VA and putting together what turned out to be, I think, a rather sophisticated individual clinical work up of current and former military personnel who had symptoms.

 

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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