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Dr. Stephen Joseph
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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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