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DoD NewsBriefing: Dr. Stephen Joseph, ASD, Health Affairs

Presenters: Dr. Stephen Joseph, ASD, Health Affairs
August 01, 1995 1:15 PM EDT

Tuesday, August 1, 1995 - 1:15 p.m.

(Participating in this briefing were Dr. Stephen Joseph and Mr. Kenneth H.Bacon, ATSD/PA.)

Mr. Bacon: Good afternoon. Welcome to our briefing.

We're presenting a triple play today. First, Dr. Stephen Joseph is going tobrief on the latest report on Gulf War Illness. He has some handouts which Ithink you've already gotten.

Then General John Sheehan, the commander of the Atlantic Command, will comeand talk about OPERATION COOPERATIVE NUGGET which, as you know, is aPartnership for Peace exercise that will begin next week at Fort Polk,Louisiana, with representatives, I think, from 14 countries.

Then I have an announcement to make relating to the Black Hawk shootdowninvestigation, and there will also be some handouts on that, and we'll takeyour questions on that and other topics. But we'll start with Dr. Joseph.

Dr. Joseph: Thank you. Good afternoon, again.

I'm sure you've all had time to read the 50-page report that we'redistributing today, so I'll make a couple of points and some of the bottomlines about it, and then will be happy to respond to your questions.

We're releasing today a report on our clinical investigation of Gulf Warveterans with illness symptoms. I've spoken to you a few times about thisbefore, and today we're releasing really what I believe will be the definitivereport -- although we never closed the book on it. It is a report of extensiveand intensive medical evaluation of over 10,000 patients.

As you'll see when you look at the document, this clearly is not the perfectstudy. The very fact that the patients are self-selected and self-referredpreempts that. But I think what we're releasing today will, in essence, be thestandard that all further discussion and theories about the issue will have tobe compared against. "Ten thousand" is a mighty big number. We believe thatthe work will stand on its own. I think this now gives us a frame of referenceagainst which we can measure theories about disease occurrence -- theoriesabout this and that.

The most important bottom line -- if I could have the first slide. Let mejust say while Colonel Gackstetter is getting up here, these are the varioushotline numbers. I think you have them in your handout. We'll put them backup again.

The top is the clinical program -- clinical evaluation. The middle one is theVA hotline, and the third -- which I think you'll be hearing more about in acouple of days from Deputy Secretary John White -- is a new hotline which isavailable for people who think they have an incident or a particular occurrencethat merits consideration, and then we'd investigate it.

If I might have the first chart there. The bottom line, really, takes offfrom the National Institute of Health finding of a year ago that we do not find-- in this very large series of over 10,000 patients -- we do not find a singleor unique illness responsible for a large -- or even significant -- proportion,or an unusual cause, responsible for a significant proportion of illness.Rather, what we find are multiple illnesses with overlapping symptoms andcauses -- illnesses and symptoms with an extremely broad range.

All these charts come directly out of the report, so you can pick them up whenyou look at that. You can see that the various categories and the standard wayof looking at the diagnosis -- the various categories ranging from 19 percentpsychological conditions on down to one percent of diseases of thegenital/urinary system --, cut clearly all across the field of medicaldiagnostics. That's the first and perhaps single most important point.

The second on the next chart... I think it's important to demonstrate, butwith a caveat. When we actually looked at these 10,000 self-referred patients,the image of disability in those patients is perhaps somewhat different thanmany people have anecdotally supposed in the past. In fact, 81 percent of allthe 10,000 people did not miss any work in the 90 days preceding their medicalevaluation, and only seven percent missed a week or more of work.

I want to be clear that I'm not saying here that there are not people who aresignificantly ill, [or] who are seriously disabled as a result of theirsymptoms post-Gulf. There certainly are. But again, we're looking at theevidence from a large group -- 10,000 patients -- and most of them are notseriously disabled.

The next two charts -- first just one, please -- makes an important pointabout the symptoms that I've already described as being of such a large andbroad array. We looked at the best comparable studies we could find -- whichare large out-patient studies that have been done on civilian populations inthe United States -- and the distribution of symptoms really is quite similarbetween the Gulf War veterans group, the CCEP, and those other studies. Thisis the distribution of symptoms among our 10,000 patients. You'll see, as youalready know, fatigue, joint pain and headache are the three largest singlecauses, but most of the symptoms are over here in this broad range of othergroups.

 

If you compare that distribution of symptoms with three large prior ambulatorycare studies done in the United States. Again, this is all described in detailin the report. You'll see, really, that the distribution of symptoms among theGulf War veterans is really quite similar to the other three studies in acivilian, large-scale out-patient population.

What we really have, then, is a group in which symptoms, rather than diseasediagnoses, are the overwhelming important thing. A very broad range ofsymptoms, and this is not unlike what you find in current and common practicein not exactly the same; because there is no exact same group to compare theseveterans with, but with similar populations in the U.S. A broad range ofmultiple symptoms, including results of stress and an important series ofthreats in the environment in which they lived.

I want to stress that this isn't the end for us. The research program thatwe've talked about on several occasions -- looking at population-based studiesto honing in even further on diagnostic possibilities to compare Gulf War eraveterans who deployed with those who didn't employ; hospital experience;mortality; birth outcomes and the rest. All these things are ongoing, and, ofcourse, we'll continue to run these assessments of the clinical population.

You remember I said the first time I came up here -- I should repeat itagain

-- that our number one objective here is to provide care for our people. Andin doing so, and while doing so, try to understand better what may have gone onin that setting.

In several months' time we will be taking the data -- as soon as we deal withthe privacy issues, protecting the privacy issues -- we'll be taking all thedata that we have -- this is an enormous mass of data on 10,000, soon it willbe 15,000 patients -- and making that data available to independent researchersso they can look at it and do whatever analyses they are particularlyinterested in.

I think those are the bottom lines. I'd be happy to respond to questions thatyou have.

Q: Have there been any indications at all in this of anything caused by gasattacks or use of chemicals?

A: As we've said before, let me say it again: neither from the perspective ofany information that we have found from the point of view of biological orchemical weapons on the battlefield in the area, nor certainly from theperspective of what we find in the clinical profile of these 10,000 selectedpatients. There is no clinical indication, nor is there indication from theinformation of biological or chemical agents playing a role in this.

Q: Does this comprehensive evaluation suggest that Gulf War illness is amyth?

A: It is absolutely not a myth. The key phrase there turns on what you meanby Gulf War Illness. We know that these patients, indeed a number larger thanthis, came home from the Gulf and, in the time since, have had a variety ofmedical symptoms and clinical diagnoses. What I believe we also know -- at thelevel I think of if not certainty, at least confidence -- is that that varietyof clinical symptoms and diagnoses was, A, not one thing, not a single mysteryillness or unique Gulf War illness, but rather a combination of symptoms andillnesses that you would expect to find in this population, and that you wouldparticularly expect to find in a population that was exposed to the kinds ofstresses that people were in the Gulf. So this is not a myth.

As I've said before, people with these complaints are suffering from thosesymptoms. But there is not "a" Gulf War Illness.

Q: The chart that you have up there right now... I thought you indicated thatamong a large number of the patients you looked at, you would find similarproblems in just the general population.

A: In the general population presenting with symptoms. Remember, the otherbars here are people who have gone into an out-patient care facility becausethey are bothered by symptoms.

Q: Does that suggest that had these veterans not gone to the Gulf War, thatmany of them might be suffering from the same symptoms...

A: I think without doubt, many of them would be suffering from the samesymptoms that they are. Many of them also have those symptoms as a result ofphysical or psychological experiences that they had in the Gulf. It's acombination of those two things.

Q: If I recall correctly, in the last presentation you made earlier this year,there was a small percentage of the group that presented a problem that youcouldn't diagnose. What was the conclusion on that group...

A: The conclusion with that group -- and it's still about the same percentage-- is again, that these are symptoms that do not group themselves into aclear-cut disease diagnosis. But the symptoms themselves, again, are similarto symptoms that you see in analogous studies and do not cluster in any wayinto a definable disease category -- particularly one that would be due to aunique or unusual cause.

Q: Would you say that the results you found are any different than the resultsthat might have been found after any of the previous wars?

A: One of the problems with that is... I would say there are two problemswith that. One is, this type of study has never been done after a previousconflict. I think this -- in terms of the focus and the size and intensity ofthe evaluation -- is different than anything that has been done before.

Two, I'm not sure we would have known after any of the previous conflicts toask the same questions in the same ways.

Three, every conflict, though it has some underlying similarities in terms ofstresses and environmental dangers, has its own special ones. Sitting in thedesert for six months in an environment where many people expected chemicalweapons to fall out of the sky in perhaps the next 30 minutes, is a differentsituation than people faced in Vietnam, or than people faced in the trenches inthe 1st World War, etc. So I think you have to view it as a unique situation,but with a very strong common denominator. I would venture to say that ifsimilar studies had been done in prior conflicts or following prior conflicts,you probably would have had results that are not dissimilar from these.

Q: Can you provide an update on what evidence of a Gulf War syndrome you havefrom other veterans in other countries that served in the Gulf War -- theextent of their illnesses and problems? And also, if you have a cost estimateof what this particular clinical analysis has cost.

A: On the first one, the other nation that has looked most intensively at thisissue is the United Kingdom. I believe they have approximately 500 -- I'm notsure of the number, so don't hold me to it -- but approximately 500, severalhundred Gulf War veterans who are concerned about similar symptoms that we havehere.

I believe there is also a very small group -- again, I'm not sure of thenumbers -- in Canada who claim similar symptoms.

To the best of my knowledge in most or all of the coalition partners, therereally is no public awareness of descriptions of symptoms such as this. Youremember also from earlier briefings, when we went back and checked with thepartners in the Gulf nations themselves, they had no light that they could shedon either the prior occurrence or the current existence of any kind of symptomcomplex in their countries or among their troops.

With regard to cost, this particular study, as opposed to the other morediscreet research programs separate from this, we have funded this basicallyout of hide. Again, the primary purpose here was to do what we do, which wasto provide care to our people; and all the physicians and nurses and dataprocessing and laboratory tests and specialty consultations and the rest, wedid out of our ongoing defense health program system. So I couldn't give youan actual number, a dollar amount, for what was spent on this. But we hadpeople specifically working -- physicians and nurses and teams and laboratoryand the rest of it -- at each one of our major medical centers, and certainlyif you were able to break the cost out of our ongoing O&M -- defense healthprogram O&M -- it would, I'm sure, run into the tens of millions of dollars,but I can't give you a closer figure than that.

Q: Of the 10,000, how many of them were you not able to make any kind ofdiagnosis, and how many of them were you able to say this person has this, thisperson has that?

A: Let me use that opportunity, again, to differentiate between diseasediagnosis -- this person has rheumatoid arthritis -- and symptom diagnosis --this person has chronic joint pain, not specifically diagnosed as a particularillness. In fact, that person with rheumatoid arthritis probably has chronicjoint pain, perhaps some anxiety and depression, perhaps easy fatiguability,etc., so let me divorce those two things.

What I'm saying here today is that clearly what's the most important here interms of what's going on is the symptom complexes rather than the diagnoses.

Back to the diagnostic entities themselves, that same percentage of, it'sapproximately... Here it is, 17 percent. This is the group that falls undersigns, symptoms, and ill-defined conditions -- do not reach a definitivedisease diagnosis -- but indeed, many of their symptoms are quite similar tothe symptoms of people in other disease diagnostic categories. Thosepercentages have been similar.

Another thing gives us confidence here. Remember when I talked about ourfirst thousand and our first two thousand? Those percentages have not changedall along the way.

Q: In terms of the illnesses and diseases that you found, did you find anycluster of them that were related to Gulf service at all?

A: We have not. One of the ongoing research activities is the Army geographicstudy. But at the current level, we have not found major clusters in time andspace of people with symptoms, and certainly not of particular symptomcomplexes. You'll see in the report that the unit of assignment of people whothen later self-referred -- the unit of assignment in the Gulf of people whonow self-referred to the CCEP -- covers thousands of different units, and mostof them are of very small numbers of people from that unit turning up withsymptoms later. We don't find any definite pattern as yet, but again, we'renot closing the books on this, and we will keep looking.

Q: Given your findings, are you happy with continuing to call it Gulf WarSyndrome?

A: We got into this last time as to what's a syndrome and what's not. Onedefinition of a syndrome is a collection of symptoms otherwise undefined. Inthat sense, you could say there is a Gulf War Syndrome.

Another definition of a syndrome takes it more to this idea of a specificdisease entity, and, in that sense, I think this shows very clearly that thereis not a Gulf War Syndrome of any size or scale in this group, so it depends alittle bit on your definition.

The symptoms are real, the symptoms are important. But they don't clusterinto specific diseases or an identifiable syndrome.

Q: You say that one in five of these people have psychological conditions.What do you mean by that? Are they crazy or...

A: Absolutely not.

Q: Do they imagine that they have certain symptoms that they don't...

A: No. Psychological symptoms, my friend, are as real and as troubling and aspainful as symptoms referable to your hip or your back. Among the CCEPpatients with psychological conditions, let me read you a list of the mostcommon diagnoses. Tension headache, mild or stress-related anxiety ordepression, post- traumatic stress disorder, and alcohol-related disorders.Again, when you look at this, well, this doesn't show up on this slide. Whenyou look at this, you find a very similar distribution of psychologicalconditions and symptoms that you would find in the kinds of studies that wereferred to on this chart. It's the garden variety psychological symptoms andconditions that you find in an out-patient department.

Again, go back to my slide of disability. That gives me a chance to say thatmost -- the very large proportion of people -- with psychological as well asall symptoms, were not severely disabled in terms of inability to function.Now some are and were -- and I don't want to gloss over that -- but the numbersspeak for themselves in terms of what the population experience is.

Q: Would these people be predisposed to that kind of thing, or is this becauseof special stress under wartime conditions...

A: I think it's probably a combination of those things. I don't think ittakes a rocket scientist to understand that people exposed to the kind of harshenvironment that they were in in the Gulf, under the stresses of imminentconflict and... We all saw the tape, and living in and through thoseexperiences, it's not, to me, a great stretch of the imagination to say thatsome among that group -- a significant number, perhaps, among the group -- wholater turn up with symptoms, had symptoms that were a result of those stresses.That, to me, is hardly revolutionary medical insight.

Q: When you say no unique cause, do you mean you've ruled out many of thetheories we've heard about in the last couple of years, including the reactionof the vaccine and multiple chemical sensitivity, and the biological chemical,have you ruled all those out as credible?

A: I try to be very careful not to talk about ruling out. But when you have anumber of this power and you find this kind of dispersion and no focus thatwould knit it together with regard to one cause or a unique agent or other, itbegins to be highly, highly improbable.

There's an old saying in medicine, when you hear hoofbeats in the street andyou look out the window, you expect to see horses, not unicorns. Now you mightsee a unicorn, and it's important for us to keep looking. But there'scertainly nothing in this data, and that's why I refer to it now . I thinkthis is the standard that arguments now have to have measured against. There'snothing in this data that would say, "Oh, yes, that's a unicorn."

Q: What about the flea collar problem? There were some reports that peoplewho wore in the Gulf the flea collar, and that interacted in some way...

A: We could stand up here for as long as we have time and talk about thistheory or that theory. I think that's what I was trying to respond to in theprior question. Both in the breadth of the symptoms and the comparability ofthe symptoms with what one would expect to see in a symptomatic population, andthe non-identification of a single cause or potential cause that would spanthose symptoms or be clustered in one group, begins really to make it very hardto sustain an argument that whether it was a flea collar or a what or awhatever, could be responsible for any significant proportion of this.

Thank you.

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