Birmingham VA Medical Center
Mr. Boxx: Good afternoon.
As you will recall, earlier this summer our Assistant Secretary for Health Affairs, Dr. Steve Joseph, announced the start of a comprehensive clinical evaluation program to look into DoD personnel who are experiencing illnesses which may be related to their service in the Persian Gulf War. As promised then, he is today here to give you a status report on this ongoing effort and also some other initiatives that we are trying to take to get to the bottom of this.
With Dr. Joseph is an old friend of mine from my earlier life at VA, Dr. Bob Roswell, who is the Chief of Staff at the Birmingham VA Medical Center. He is also the Executive Director of the Persian Gulf Veterans Coordinating Board.
We've asked Dr. Roswell to bring you up to date on the VA's activities and the coordinating board's work, to give you a better understanding of the efforts that this Administration is taking to try to get to the bottom of this very complex issue.
Dr. Joseph will have some opening words. Dr. Roswell will have a few opening words. Then they'll both be happy to take your questions. I will come back at the end of that for any follow-on on other topics that you might have--unless that has worn you out by that time, which is okay.
Dr. Joseph: Thank you, Dennis.
What this is really all about, as we said back in May, is taking care of our people. One point I would really like to hammer in at the beginning is the point I made back then, that it's our conviction that in trying to decipher what symptoms and illnesses in our Persian Gulf vets have been caused by, it's important that we start at the right end of the stick. The right end of the stick is taking care of the patients, and examining as many patients as we can as carefully as we can in a standardized system, in collaboration with the VA. We have parallel systems. And trying from then to work back to see if there might be some causes that clump together.
That is what we've undertaken. It's a part of a much larger effort on the part of the Administration and on the part of the Department to take care of the people who we have responsibilities to. We are undertaking some new initiatives in addition to that now. I'll be talking in a few minutes about our opening two specialized care centers to follow down the more perplexing of these diagnoses as we go on.
We have a number of new research initiatives. In fact DoD will be putting a line item in the '96 budget, somewhere between $15 and $20 million in additional initiatives, both in terms of research around issues related to health in the Persian Gulf and changes in our care patterns in that regard, but we can talk more about that in a moment.
We said back then that we would give you a progress report, and that's what I'm going to do this afternoon. I have to emphasize that these are preliminary findings. I'm going to be reporting on what we feel are fairly complete results on over 1,000 patients. That's a large number. If you look at these issues across medical literature, 1,000 patients has a lot of power, but this is a preliminary finding. As you see in the material that you had, setting up our DoD hotline, we now have 11,000 people who have registered, and I think it will help you follow what I'm going to say. If you think about this as kind of a medical diagnostic funnel -- 11,000 people register and we put them through a diagnostic process like a funnel, trying to make the easiest diagnoses first, and going on through what is really a very sophisticated and intricate series of medical exams and consultations, progressively trying to winnow out more and more diagnoses from the thousand. But remember, 11,000 people, we have about 8,000 already in the diagnostic system somewhere. You'll see in the report the over 1,000 that we feel we've reached a pretty complete understanding of in one sense. In addition, that 11,000 people are not representative, of course, of the entire 700,000 people who served in the Gulf.
So I think you look at this from two perspectives. One, the most important thing we're doing is providing clinical care and diagnosis to our people. The primary emphasis here is to find out what people are hurting from, try and put those symptoms into a recognizable pattern, treat them, symptoms or illnesses. Treat them, try to get them better, and then try to learn from the information that we have aggregated as we work through that large number of people.
Of the 1,000 people who have been through that funnel so far, so to speak, about 85 percent turn out to have recognizable diagnosis or multiple diagnoses. Things that are not unexpected, readily understandable patterns of illness or collections of symptoms. They range far across the board. If you look at the sheet that you have, there's every conceivable type of diagnosis in there. That's a very important finding--multiple, wide-ranging diagnoses in about 85 percent of people.
The other 15 percent are those in which we're really not clear yet as to what the diagnosis is. Those are the people that are the ones for whom it's most important that we now set up these two specialized care centers. One in the Washington, D.C. area which will be Walter Reed and Bethesda; one in San Antonio, Wilford Hall Air Force Medical Center, and Brooks Army Medical Center, and we'll concentrate there our most sophisticated ability with the help of the Institute of Medicine, who is working with us in this effort, what additional diagnostic tests, what additional investigations can we think of to try and again, through that funnel, whittle away at that 15 percent where we're yet not clear enough about what the diagnosis is.
Two other very important things I think to say about where we are to date. One, from the examination of these thousand that we have completed, in essence, or 85 percent of them; and also from the other many thousands who are in that pipeline. It's clear that we have not identified a single or unique cause or agent which would be responsible for a large number or a significant proportion of the illnesses in our Persian Gulf veterans. This is a very broad set of diagnostic categories with many causes, and there is no, sort of in medical parlance-magic bullet. There's not a single agent here which is responsible for this 85 percent, a broad array of diagnoses.
The important question, of course, is what about the 15 percent where we're not sure. It is theoretically possible, I think it's unlikely, but it's theoretically possible, that we'll find a broad cluster there due to a single agent. I don't believe so and there's nothing in the data yet that would indicate that, but obviously, we're going to keep looking.
The final important finding from this is that a number of patients in our first 1,000 have medical conditions of psychologic origin. This is to be expected. In fact I think we would be very surprised if it were not so. In fact, all across the board if you look at this pattern of diagnosis, it's really not that different than you would expect to see in a large clinic or in a hospital out-patient department if you were looking at a comparable population. Of course there is no really comparable population, as near as we can tell.
I think it's important that we understand that those individuals who are diagnosed with psychological conditions, this is as valid, as important, these people are hurting as much from their symptoms as if they had bad hips or arthritic knees. The good news is, as with most of the individuals, the vast majority of the individuals in this first thousand we were able to identify and specify symptoms, we were able to make diagnoses in the significant majority, and most important, we're able then to treat and try to offer people relief from what ails them. The vast majority are responding to that treatment, and that is equally so among the category that have psychological/medical conditions.
That's where we are. This is a work in progress. We've asked the IOM, as you know, to work with us in that. They've had a preliminary look at what we're doing. They issued a report last night. We can talk about that if you wish. We've got many miles yet to go. But I would just reiterate that for the population that we are looking at, 1,000 is a number with some power, and I think we have some indications that are important, some of which I have mentioned.
You can't generalize from that 1,000 people or that 11,000 people who put themselves on the registry to the entire 700,000 that served in the Gulf, but I think we're having a clearer and clearer picture of what we're dealing with. And most important, what we're offering is relief, support, and in some cases a cure to our patients.
I'll quit with that and ask Dr. Roswell to make his comments, then I'll come back up and we'll take questions.
Dr. Roswell: The cooperation currently enjoyed and occurring between the Department of Defense and the Department of Veterans Affairs, as well as the Department of Health and Human Services has, in large part, made the comprehensive clinical evaluation program a study which will provide information that will not only help the Department of Defense better understand the needs, but also help the Department of Veterans Affairs.
The study was designed to be compatible with ongoing activities within the Department of Veterans Affairs, and the findings that you've heard presented here today are consistent with preliminary results from the Department of Veterans Affairs own Persian Gulf registry. This particular registry has enrolled over 34,000 Persian Gulf veterans, and an analysis of initial examination data on over 17,000 Persian Gulf veterans yields similar types of information.
I should point out that the VA Persian Gulf registry, like the comprehensive clinical evaluation program, is a self-reported, self-referred type of registry. Therefore, it's incorrect to extrapolate the types of problems reported on a self-referred basis to a large population. We know there were about 697,000 troops who served in the Persian Gulf, and we don't mean to interpret this information to say that the illnesses identified in these two registries are seen with equal frequency in all troops who served in the Persian Gulf.
But looking at VA's own Persian Gulf registry, the first 17,000 patients examined through that process have revealed very similar information. Specifically, we have seen a wide range of medical problems, lots of problems with multiple etiologies. We've seen a much smaller number of patients who have symptoms that apparently originate from unexplained illnesses. In the VA Persian Gulf registry, approximately 20 percent of the people who have participated to date report symptoms without a specific diagnosis. It seems certain, based on the analysis of information in this registry, that we're dealing with multiple causes, giving rise to the unexplained symptoms, as opposed to a single agent, multiple causes with overlying symptoms in these particular patients.
Further research will certainly be needed to clarify all of the potential factors that may have contributed to current health problems in Persian Gulf veterans. A great deal of this research is planned and in progress. However, today priority care is available for any veteran of the Persian Gulf who feels he or she may have concerns about their health or problems with their health. This care was authorized in 1993 and is available at 171 VA medical centers nationwide.
In addition, recent legislation enacted in November of this year authorizes for the first time disability compensation for veterans of the Persian Gulf War who have chronic disabilities resulting from their service in the Persian Gulf and characterized by the unexplained symptoms we've talked about. This is landmark legislation and will allow the Department to very soon begin providing disability compensation for disabled veterans with unexplained illnesses originating from these symptoms.
There is also a great deal of research ongoing. As I said, the Persian Gulf registry, the comprehensive clinical evaluation program are self-referred registries. To really understand the incidence of unexplained illness and compare that with the normal population, large epidemiologic studies now being planned will be conducted. Early next year the Department of Veterans Affairs will survey 15,000 Persian Gulf veterans and compare the information they provide with similar information provided by 15,000 veterans who did not serve in the Persian Gulf. Similar studies being conducted at the Naval Health Research Center out of San Diego, as well as the Center for Disease Control surveying Iowa veterans, will yield similar information that will help us better understand that.
In addition, the VA has established three national environmental hazard research centers located in Boston, East Orange, New Jersey, and in Portland, Oregon. These national environmental hazard research centers are currently conducting a wide range of research activities. In fact, over 14 projects directed to look at a wide variety of potential exposures and factors that may be influencing the health of Persian Gulf veterans.
Certainly we have come a long ways. We've learned a great deal of information. We still have questions left to answer. But the high level of cooperation between the Department of Defense and the Department of Veterans Affairs is moving us much closer to those answers.
Thank you. I'd be happy to answer any questions, along with Dr. Joseph.
Q: The 11,000 are all veterans who came forward saying that they believe they had an ailment which, in their mind, stemmed from the war.
Joseph: That's right. We set up a hotline. It's housed in Monterey. Secretary Perry and General Shali sent letters to all active duty troops. That was the mechanism for generating those registries.
Q: Of the 85 percent, is it your conclusion or have you reached any conclusion that the known ailments that they suffer from do in fact stem back to the Gulf War in some connection or other?
Joseph: That's a difficult question to answer. For example, if I'm in that 85 percent and I have chronic arthritis in my right knee, and I fell off a HUMVEE in the Gulf, injured my right knee, that's a pretty clear relationship. But if I have rheumatoid arthritis or diabetes, and the first occasion when I became ill or reported symptoms, was when I was on service in the Gulf. It's very difficult to tie those two things together.
In our position, I think is the same as the VA's. We don't require a relationship of causality in that sense. Nor, I believe, do they.
What's behind your question, I think, let me try to talk directly to, is the question of whether there is or was anything in the Gulf environment which was causal of these diagnoses or symptoms. What I tried to say in my opening statement is if you look at the broad range of diagnoses that we find, at what we understand medically, and of course medicine is a very inexact science in that sense, of the multiple causes of those multiple diagnoses, we on't find any magic bullet, any indication of a single agent or a single causality that would cover that broad spectrum.
Q: What are some of the causes that cause these illnesses?
Joseph: If you look at that list you have, if there are people who have muscular skeletal injuries, whether or not they got the first symptoms in the Gulf, that would be pretty easy and direct. If they're people who have chronic respiratory disease, that may have been something they had before they went to the Gulf. It was exacerbated or aggravated by their service in the Gulf. If someone has a more systemic condition, somebody who has asthma, somebody who has an atopic skin condition, that may or may not have been either aggravated by or begun when they were in the Gulf. Across that range, we're really talking in what we portray here in these first thousand patients of almost the entire range of medicine. Some of those things we know clearly what "the cause" is. Other things, no one is sure. What is the cause of diabetes mellitus? We can explain its mechanism, but don't know its ultimate cause.
The key point is coming back to what we know about agents, that there's no specific thing that we can point to, in a really rather sophisticated range of investigation, that would from anything we know about medicine to date, that would explain that kind of range.
Q: ...combination of an insect repellant and some type of vaccine? Did you find any information...
Joseph: There's nothing that we have in working this data before, nor, I guess I would add, there's nothing in what we know in terms of the background of insect repellant and the pyridoxamine, that would connect to what we're seeing in this broad range. We're looking at that question. We're looking at that question in the clinical evaluations themselves. And as you probably know, we're also supporting research to look specifically at that issue. I think the thing best to say is at this point, and I think you know we're well along on that road, there's no indication of effects of either of those agents individually or in combination.
Roswell: I wanted to make a comment on the kinds of illnesses that we have seen in association with service in the Persian Gulf. Currently the VA has awarded service connection compensation benefits to over 12,000 veterans who served in the Persian Gulf. Now these benefits are awarded based on a temporal association between the illness or disability and service in the Persian Gulf. But the most common conditions that have been service-connected in Persian Gulf veterans include respiratory conditions, such things as chronic sinusitis, bronchitis, asthma, and skin conditions, various types of skin rashes, tend to be the two most common conditions that have been established as service connected. Musculoskeletal, orthopedic type injuries. Arthritis is another common factor.
With regard to infectious diseases, we know of a handful of cases, I believe about 31 or 32 cases of a parasitic infectious diseases known as leishmaniasis. Yet this accounts for a very, very small percentage of the overall problem in the Persian Gulf.
I might also point out that with regard to your question about pyridostigmine, that's a question that has been of great concern to many of us. When the National Institute of Health panel convened in April of this year, they concluded that the pyridostigmine bromide taken by U.S. troops and then exposed to pesticides which were known to have been present in theater might enhance the acute toxicity of the pesticides, but would not likely cause the kind of chronic problems being seen in Persian Gulf veterans. That was a conclusion of the NIH panel.
Q: What's been the experience after previous wars? Have we had the same kind of, any of the same kind of complaints about a mystery disease?
Joseph: I don't think there really is any comparable experience: one, in terms of the concentrated focus of troops in that theater; two, in terms of the concentrated focus on those troops by the media and with the resultant focus on their illnesses. As near, I think, as we can tease out, in all previous conflicts you see a mixture of garden variety consequences, like the fellow who falls off the HUMVEE. You also see specific conditions that are related to the theater, such as high rates of malaria in terms of people who served in the 2nd World War in Southeast Asia, and those who didn't take their prophylaxis in the Vietnam War, and you do see a clustering of psychological issues in people exposed to environments of high threat and high anxiety.
So I think, although I'm talking about medical impression rather than hard data, from what we're seeing in the evaluation program, there really is nothing surprisingly different from what we would expect to see, or probably from what our forbearers saw, although they didn't look at it in the same sort of organized way nor under the same scrutiny from previous conflicts.
Q: Is there any similarity among the 15 percent as far as symptoms, the 15 percent who have not been diagnosed? Are there parallels between them and some of the people you have diagnosed?
Joseph: That's one of the important questions. The answer is, to date, no. We don't see anything in terms of clustering of symptoms, partial diagnoses, other clues. That is, of course, the reason for setting up these specialized care centers, is to take that group that is the least clear and put them in a situation where hey, we have continued standardization of examination, further sophistication of workup, and with a group where we're looking precisely for that. To date, we see no correlations across that group, but that's what we'll be looking for in the specialized care centers.
Q: There were thousands of children who also went through this program. Were there results similar? Did they have any connection to the veterans...
Joseph: Same kind of spread. We have a small number, it's a relatively small number of that first 1,000 -- I think about 50 are dependents, and maybe a third of those are pediatric patients. Again, in the group of spouses and children, we find a wide variety of mostly common diagnoses and nothing that would point to a kind of single magic bullet or unique agent.
Q: Is it becoming less likely that there's a single, previously unknown Gulf War Syndrome or does the 15 percent suggest that it's quite likely, we don't know what it is so it's quite likely that there is such a thing?
Joseph: Since I'm 30-some-odd years out of medical school I went back yesterday. I looked up Webster on syndrome. What a syndrome is, I thought this was so and it is so, is a collection of symptoms or conditions not necessarily referable to a single diagnosis or disease. A syndrome is really a collection of symptoms. So what I've described to you in one sense is a syndrome -- a large collection of multiple diagnoses and overlapping symptoms. This is not the same thing as saying there is a single illness or a single disease. In fact I think what both Dr. Roswell and I have been saying is the nature of the broad spread of symptoms and diagnoses that we're finding points very strongly away from there being a single illness or disease.
Roswell: If I could maybe just emphasize that point. Even though the 20 percent in our registry, the 15 percent in the CCEP, with unexplained symptoms is an area of great concern, and we do see similarities that symptoms such as fatigue, joint pains, memory loss, headaches, are consistently reported. If you look at individual patients, as I do each week when I have my clinic back in Birmingham and see these veterans, every veteran is somewhat different. Every veteran is an individual and needs to be treated and evaluated individually. Even though there are consistent patterns of reporting symptoms, in individual patients the patterns m