NOTE: Unedited Document




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OCTOBER 9, 1996

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The meeting was convened at the Sheraton

Inn Tampa and Conference Center, 7401 East

Hillsborough Avenue, Tampa, Florida, at 9:00 a.m.,

Joyce Lashof, Chairperson, presiding.


JOYCE LASHOF, Chairperson

































Public Comment Page

Tim Ivers 4

Robert Struyk 13

Kevin Knight 20

Robert Stroud 28

Cathleen McGarry 34

Suzanne Migdall 41

Scott Vanderheyden 48

Jeffrey Ford 56

Wallace Heath 65

John Lawrence 69

William Carpenter 77

Staff Briefings and Committee Discussion


Michael Kowalok 84

Risk Communications

Tom McDaniels 114


Mark Brown 134


Kelly Brix 181

Lois Joellenbeck 203

Joseph Cassells 220


1 P-R-O-C-E-E-D-I-N-G-S

2 (9:00 a.m.)

3 CHAIRPERSON LASHOF: I'd like to call this

4 meeting to order. This is the ninth meeting of the

5 Presidential Advisory Committee on the Gulf War

6 Veterans' Illnesses, and as is our practice we begin

7 each meeting with public testimony from veterans and

8 other interested persons who have requested to appear.

9 We've had a large request this morning and

10 we will have to move fairly promptly to accommodate

11 everyone and to keep on the schedule of the Committee.

12 Therefore, each person has five minutes to present and

13 five minutes for questioning from the Committee. But

14 be assured that if you have any material that you wish

15 to leave to the Committee, additional information you

16 wish to submit to the Committee, it will be received,

17 read and carefully studied. With that, let me call

18 the first person who is asked to testify, Mr. Tim

19 Ivers.

20 TIM IVERS: Dr. Lashof, distinguished

21 members of the Committee, welcome to Florida. I hope

22 you sample some hospitality while you're here and that

23 your stay is productive.

24 Let me state who I am and why I am here

25 before you today. I am with the Florida Department of


1 Veterans Affairs. This is a State agency that a part

2 of our charter is to advocate for Florida's veterans.

3 We also work for some of the service organizations

4 such as American Legion, Vietnam Veterans and those

5 groups, but they have their own policy and their own

6 stand on Gulf War illness, so I do not represent them

7 today. I only represent Florida veterans.

8 I hope to provide you with some positive

9 input and some food for thought today. Let me begin

10 by speaking to the issue of public law 103446,

11 compensation for undiagnosed illnesses. If I may, a

12 few statements about a reality check on that

13 particular law. The practice of medicine in the

14 1990's does not very often permit a person to be

15 treated without coming to some sort of diagnosis.

16 Doctors who treat people who are covered by insurance

17 in a recent GAO study on veterans' health care found

18 that more than 90 percent of the veterans are covered

19 by health insurance doctors who have to respond to

20 health insurance and have to come up with a diagnosis

21 to be able to bill an insurance company on behalf of

22 that person.

23 VA hospitals live and breathe on DIG,

24 diagnostic related groups. That's how they get their

25 funding. Therefore it is a very rare instance when


1 somebody gets treated for a chronic disability for

2 which there is no diagnosis. The VA stand on this

3 particular issue is that if any diagnosis is found

4 then no compensation will be paid under the provision

5 of law. I submit to you that the law would be

6 considerably more effective if there was an

7 alternative to a simple statement of undiagnosed

8 illness.

9 I think we've come far enough in the study

10 of Gulf War illnesses to be able to identify a complex

11 of symptoms that also should receive compensation,

12 regardless of the diagnosis. The VA has, in its laws,

13 requirements on chronicity and any law that might be

14 used could also have a requirement of the consistency

15 of symptoms throughout the treatment. I would also

16 ask that there be some strengthening of the value of

17 lay evidence versus medical evidence in consideration

18 of these conditions.

19 Now I move on, please, to a second issue. We,

20 in Florida, have had some experience with exposure of

21 veterans to chemicals. In particular, there was a

22 National Guard Unit out of Avon Park, the 325th, that

23 was sent to Saudi to paint vehicles. I shan't go into

24 great detail because Mr. Carpenter is here and he's

25 going to speak to you later and he can -- he's a


1 veteran of the 325th and can provide a much greater

2 detail and first-hand testimony than I. But they were

3 sent to spray chemically resistant -- chemical warfare

4 resistant paint on vehicles without the proper

5 safeguards. A number of them were infected and made

6 ill by this paint, which is a known lung and skin

7 irritant and probably are a carcinogen, but not

8 sufficient study has been done.

9 Two points to be made about this. These

10 men and women were not infected or made disabled by

11 exotic tactical war chemicals from Saddam Hussein.

12 These people were made ill by paint -- simple every

13 day but specifically formulated paint made in the USA,

14 labelled in the USA, bought from the lowest contract

15 bidder and sent to the Department of Defense. The

16 Department of Defense knew better than to have these

17 people spray this paint without adequate protection,

18 but it was done anyway and they were made ill.

19 The second point about this is that when

20 the investigation into this problem began there were

21 no records about it with the Department of Defense.

22 The records were gleaned from the National Guard Unit

23 itself and from the State National Guard Headquarters.

24 The Department of Defense initially denied that any

25 National Guard units had been used to spray this kind


1 of paint. They said it was too dangerous and that

2 only properly trained army personnel were permitted to

3 spray it, but they were wrong.

4 So the point is, is that the records that

5 you might seek regarding chemical exposure are not all

6 going to be found at the Department of Defense.

7 Sometimes you're going to have to dig into the very

8 grass roots, that is the National Guard units and the

9 Reserve units themselves, which brings me to another

10 point -- anecdotal evidence.

11 I've spoken to a number of veterans

12 through the years, not the least of which is my very

13 own son who was stationed near Dhahran before the

14 ground war began and moved north with the units as

15 they advanced through the desert and wound up at the

16 Kuwait City Airport. He and other veterans that I've

17 talked to tell me that there were constant alerts when

18 chemical alarms would go off and they would be told to

19 put on their chem suits. While they had their chem

20 suits on the test strips or the strips, chemical

21 exposure strips on their suits showed that there were

22 chemicals around them, yet none of this is reported.

23 It had to have happened. I mean it happened to too

24 many veterans for it not to have happened.

25 I realize that anecdotal evidence by


1 itself is not determinative. It doesn't really prove

2 anything, but it gives you a place to start. It gives

3 you somewhere to start looking for clues. I think

4 that this has been overlooked by some of the

5 Department of Defense investigators.

6 The point of all this -- I realize that

7 the Committee has to turn in their final report at the

8 end of 1996. I realize that at that point the

9 political atmosphere will be considerably different

10 than it is now. We will either have a very short-term

11 or very long-term lame duck president or we'll have a

12 transition team in place. But regardless of who is

13 here or how the power structure might be, I believe

14 that the Committee's work will nowhere near be done by

15 the end of 1996.

16 I suggest to you that part of your

17 recommendation should be that a committee -- either

18 this committee or one very much like it -- continue to

19 work to resolve these unsolved questions about Gulf

20 War illness some time into the future. I would

21 suggest to you that the committee needs to restructure

22 into two distinct roles. The first role would be an

23 investigatory role. I still think that there is a

24 wealth of evidence that is out there to be found. We

25 see it every day in the newspaper reports, on TV


1 shows, and everywhere else you turn, that new

2 disclosures are made.

3 CHAIRPERSON LASHOF: You have one minute

4 left.

5 TIM IVERS: Okay. Thank you. I think

6 that the Committee could start their investigation

7 with more anecdotal evidence -- go to Reserve and

8 National Guard units. I think that DOD is too

9 fragmented to give you a cogent picture. I do not

10 believe that the truth is going to come to you like a

11 slide projected on a screen, but instead as a jigsaw

12 puzzle, one piece at a time, and you need help to find

13 all the pieces.

14 The second role would be very much as the

15 one that you perform now -- to synthesize, gather and

16 sift through all of the evidenc, put together and make

17 recommendations for legislation and recommendations to

18 the President.

19 My final entreaty to you is I've worked in

20 veterans' business now for more than 25 years. I've

21 watched while it took more than 50 years for the

22 prisoners of World War II to get the recognition for

23 medical disabilities that they deserve. I've watched

24 as it's taken more than 30 years for Agent Orange

25 questions to be resolved. This can't take that long -


1 - I implore you, don't let it take that long.

2 If you make an error, let it be on the

3 side of granting the benefits and the medical care.

4 Twenty-five years from now if we look back and that

5 was a mistake, that's a mistake we can live with. If

6 we make a mistake in the other direction, that's not

7 a mistake that we can live with. Thank you.

8 CHAIRPERSON LASHOF: Thank you very much.

9 I think we have time for maybe one or two questions.

10 DR. KIDD TAYLOR: I have one regarding the

11 paints that were used by the National Guard. What

12 were the contents? Do you have a data sheet that

13 lists what the exposures might have been?

14 TIM IVERS: The acronym for the paint is

15 CRC. It's a paint that was sprayed on vehicles that

16 were brought from northern Europe where army vehicles

17 were stationed at that time and it was intended to be

18 a paint that would resist chemical warfare weapons.

19 DR. KIDD TAYLOR: But you don't know the

20 specific contents of the paint?

21 TIM IVERS: No, but I can get that for you

22 and provide that for you in written form.

23 DR. KIDD TAYLOR: And there were how many

24 veterans that were exposed to that?

25 TIM IVERS: I believe about 120 -- about


1 250.

2 DR. KIDD TAYLOR: Are they still

3 experiencing any symptoms similar to what's been --

4 TIM IVERS: They were recognized by the VA

5 at the time -- at the time that this exposure was

6 discovered the medical records for all of the members

7 of the unit were gathered. They were invited to file

8 claims. Those members who chose to file claims were

9 given a specialty exam at the VA Medical Center in

10 Tampa here in town, with special attention to lung and

11 skin disabilities. If any disabilities were found,

12 then compensation was granted.

13 CHAIRPERSON LASHOF: The staff have been

14 investigation CRC and have prepared a memo which they

15 will be getting to the Committee shortly. Thank you

16 very much.

17 DR. CAPLAN: Thank you for that very

18 eloquent statement. I wanted to make sure I heard

19 your opinion about the first matter you talked about,

20 which was the fit between the public law and the

21 presentation of illness. Were you saying that you

22 thought that the illness constellation is such that it

23 meets the laws that now stand or that the law really

24 does have to be modified relative to the patterns or

25 constellation of illness that is associated with Gulf


1 War service?

2 TIM IVERS: I believe that the law needs

3 to be modified. The laws that currently stand only

4 permit compensation for undiagnosed conditions or some

5 conditions that can be found in other ways to be

6 related to service. As soon as a veteran has a

7 diagnosis the part about the undiagnosed illness is

8 out the window. The VA will not grant compensation

9 unless they find some other condition for which

10 compensation can be granted through routine channels.

11 CHAIRPERSON LASHOF: Thank you very much.

12 I think we must move along.

13 TIM IVERS: Thank you for your time and

14 attention.


16 ROBERT STRUYK: Good morning, ladies and

17 gentlemen. I'd like to start off by thanking the

18 Presidential Advisory Committee for letting me be part

19 of this meeting today. My name is Robert Struyk and

20 I am a Gulf War veteran that was with the 351st

21 Military Police Company, which is the Army Reserve

22 Combat Support Unit out of Ocala, Florida. I was a

23 member of that unit for 22 years and 11 months. It

24 was a little short of my 30 year goal.

25 The reason for not meeting my 30 year goal


1 was because of due to my not being able to perform my

2 physical training test following my return from the

3 Gulf War. This test consisted of a two-mile run, sit-

4 ups, push-ups.

5 Our unit was in Saudi Arabia and Iraq area

6 from 1 November 1990 to 5 April of 1991 and was

7 located in many different areas during Operation

8 Desert Shield and Desert Storm. We started off at

9 Cement City in Dammam and then went to M and M

10 Compound in Dhahran. Log Base Charlie, which was

11 located on the Saudi and Iraq border on the flanking

12 side, Rafha, King Khaled Military City, MSR Texas and

13 into the outskirts of southwestern Iraq.

14 While in the Persian Gulf I was the

15 assigned motor sergeant and was responsible for

16 getting the vehicles and equipment off the boat, as

17 well as reloading the equipment and keeping 70 pieces

18 of equipment running and ready for the battle field,

19 making many trips back to Dhahran to pick up supplies

20 plus other duties that the commander assigned to me.

21 The unit's missions were battlefield

22 circulation control, convoy escorts, various security,

23 working the POWs in the POW compounds. We also opened

24 up Log Base Charlie, as well as controlling traffic on

25 the main supply routes for safety reasons.


1 I, like many other Gulf veterans, have had

2 many health problems while serving in the Gulf and

3 after returning from the Gulf War. It started out

4 with severe chest pains and a rapid heart beat, as

5 well as diarrhea and abdominal pain. I was evacuated

6 to Lance Dual Army Hospital in Germany where I had

7 some blood tests done and a stress test done. I saw

8 the doctor one time and never did get any results back

9 on what they found. As far as any records are

10 concerned, there are none to be found.

11 Other problems that I have are my heart

12 acting abnormal, severe headaches, joint pains,

13 dizziness, blurred vision, fatigue, upper respiratory

14 problems, ringing in the ears, liver and kidney

15 problems, loss of muscle control, memory loss,

16 diarrhea and abdominal pain, swallowing problem,

17 thyroid problem, metallic taste in the mouth, skin

18 rashes, numbness in the fingers, blood in my urine and

19 stool, gums bleed easily, and my cholesterol has

20 skyrocketed to 323.

21 I did take the PB pills and the Anthrax

22 shots. I have been going to the VA hospital in

23 Gainesville, Florida since November of 1993 and I have

24 had over 90 appointments and have seen over 120

25 doctors and two doctors in Ocala that the VA would not


1 take care of. My employer, which is Ocala Lumber

2 Sales, where I am a shop supervisor, has really

3 supported me and has never given me a hard time due to

4 going to the VA hospital or to the doctors in Ocala.

5 I have had two operations since returning.

6 One of the operations was the removal of the right

7 side thyroid, which was done in April of 1994. The

8 other was carotid artery surgery on the right side,

9 which I had done in March of '95. It's stopped up

10 again at 60 to 70 percent.

11 Before I had the thyroid operation I

12 requested that the thyroid be tested for chemical

13 exposure, since I knew I had been exposed to chemicals

14 when our MA chemical alarm detectors went off at KKMC

15 Log Base Charlie. The doctor assured me that it would

16 be done. When I returned to get my stitches removed

17 I asked the doctor what the test had revealed as far

18 as chemical exposure. He replied to me that it had

19 not been tested but wished it had been since it was

20 full of holes and that the person that was supposed to

21 test it had stepped over her boundaries when she said

22 it would be tested.

23 So far I have been diagnosed with these

24 problems. Irritable bowel syndrome, microvalve

25 prolapse, tinnitus, myodegenerative disease in both


1 knees, tachycardia, thyroid nodules, edematous,

2 hyperplasia, post-traumatic stress disorder, major

3 depression and anxiety disorder, and many that are

4 undiagnosed. I have also been in a study by the

5 University of Florida for diarrhea and abdominal pain

6 in Persian Gulf veterans. The study is not complete

7 so I have not received any information on the study so

8 far.

9 Every day I wake up you never know what

10 the day is going to be like. I do a lot of praying

11 and a lot of hoping that soon there will come a day

12 that there will be some kind of a cure for myself and

13 the other veterans that are having so much problem.

14 I know that just with the people I have been in

15 contact with that were in my unit, there have been

16 four that have had thyroid problems, one of them being

17 a 24-year old female that died because of a thyroid

18 disorder, one male that died of upper respiratory

19 problems, and a lot that are having gastro problems as

20 well as other problems like I have.

21 Some that are still in the unit have

22 problems but are scared to say anything because it

23 might jeopardize their military career, and have not

24 even gone for their Persian Gulf physical or are on

25 the Persian Gulf Registry. There are not more than a


1 dozen out of 168 people that went over to the Gulf

2 with me that's left in the unit.

3 You ask a question to yourself, am I going

4 to have to live like this for the rest of my life?

5 What's going to happen to my family when I get to the

6 point where I can't work or have to stay in bed all

7 the time? Taking pills to keep going every day,

8 wondering when my heart rate goes up to 130 or 140

9 beats a minute whether or not it's going to slow down,

10 going out to eat and hope that you can make it home

11 without having a bowel movement in your pants, every

12 time you urinate or have a bowel movement and you see

13 blood and wonder what's happening.

14 I have been asked the question, "Would I

15 go back over to the Persian Gulf if I was physically

16 able?" Yes. I'd go in a heartbeat. The one thing

17 that really hurts me though is why the government

18 covered up chemical exposures for so long after

19 hearing time after time from myself and other veterans

20 that they had been exposed to chemicals, and so many

21 are crippled or have died because of chemical exposure

22 like Michael Adcock, son of Hester Adcock.

23 I have had better luck at the VA hospital

24 than some of the Gulf vets that I have talked to.

25 Some of the vets have tried to get an appointment for


1 a Persian Gulf physical for several months and still

2 have not been contacted. I know this for a fact

3 because I waited eight months and still was not

4 contacted until I made a call to Mr. Rosenbloom's

5 office in Washington. Most of the doctors care, and

6 of course you have the doctors that will brush you off

7 because they don't know what's wrong or have not had

8 adequate information to treat us veterans.

9 I was told the last time I went to urology

10 for the blood in my urine that they would not be able

11 to see me anymore due to the cutbacks that the VA is

12 going through. What happened to the priority health

13 care that Persian Gulfers are supposed to be getting?

14 I would say that also 90 percent of my appointments at

15 the VA hospital were charged to my insurance company

16 or co-payments by myself, which totalled to be over

17 $20,000.

18 After talking to a VA representative that

19 came to my room in the hospital, he advised me to put

20 in a claim with the VA, which I did in May of '94. My

21 records started out in St. Petersburg and from there

22 went to Nashville. From there to Louisville,

23 Kentucky, back to St. Petersburg for a hearing, and

24 now back to Nashville. My claim is still pending to

25 this day. I have sent the VA all the evidence I had


1 and statements from my first sergeant as well as the

2 sergeant that treated me for the chest pains, as well

3 as the doctor's reports and one of my non-commissioned

4 officer's evaluation report dated 2 November of 1993

5 that stated I had medical problems in the Gulf, and

6 still the VA say there is not enough evidence.

7 I think that it's a lot harder for

8 reservists in the National Guard to get a claim

9 approved, especially if you're not active anymore.

10 All I want is the government to help me with my health

11 problems and my family, in case I can't work anymore.

12 I have one question I would like to address the

13 committee. Now that the government has admitted that

14 we were exposed to chemicals, what is going to be

15 done? Thank you, and I'll be glad to answer any

16 questions.

17 CHAIRPERSON LASHOF: We have just about a

18 minute for questions. Are there any questions from

19 the Committee? No? Thank you very much.

20 ROBERT STRUYK: Thank you, ma'am.

21 CHAIRPERSON LASHOF: The next person is

22 Kevin Knight.

23 KEVIN KNIGHT: Good morning. My name is

24 Kevin Knight. I am an active army reservist at this

25 time. Before I actually get started I'd like to offer


1 for the record the statements from two people, one of

2 which is Kevin Treber (phonetic) from the Desert Storm

3 Veterans in North Carolina. The other one is from a

4 Colonel Robert B. Pettijohn from -- he's a medical

5 officer, he's a colonel, from the Florida National

6 Guard. He's an occupational forensic medicine

7 reviewing medical officer. The contents of this

8 particular research will answer your question as far

9 as what CRC paint is and what it contains.

10 I'd like to speak to you today about

11 another type of chemical. These are industrial

12 chemicals. This involves about 200 to 300 people.

13 Incidently, if you'll look in front of you, you should

14 have a brown folder and you can follow along with me.

15 These industrial chemicals were in Saudi Arabia during

16 the time frame of the ground war to the end of

17 December 1991.

18 This particular mission was a clean-up

19 mission. It took place at the vehicle washrack at

20 KKMC and was staffed by several units, one of which

21 was the 164th Maintenance Company. You can see the

22 company roster, pages 28 through 30. The Military

23 Customs Inspectors in which I was in charge of was

24 comprised of soldiers from several units, and there is

25 a partial listing of that on page 32.


1 The sealand containers that contained

2 these chemicals were brought to the washrack and

3 emptied and cleaned and repackaged for shipment back

4 to war readiness or preposition supplies. Of the

5 sealand containers there were hundreds containing the

6 chemicals DS2 and STB. These chemicals are used as a

7 decontaminate for equipment and vehicles that have

8 been exposed to an NBC environment. The MSDS for

9 these two chemicals are on pages 3 through 11. There

10 were trained Hazardous Material personnel from DOD on-

11 site, they were civilians. Not once did the Army or

12 the DOD HAZ-MAT personnel ever explain to any Army

13 personnel or the Military Custom Inspectors what the

14 two chemicals were and how dangerous they are. Army

15 personnel were never given any training in the proper

16 handling of hazardous materials. There was never any

17 safety equipment issued to these soldiers for their

18 protection. Turning your attention to pages 3 through

19 11, the Material Safety Data Sheets, they specifically

20 state the type of safety equipment that's to be used.

21 They include rubber aprons, gloves, boots, full face

22 air mask, oxygen and medical personnel on site. None

23 of these items were available, and I think it's

24 interesting to note here that if the mission had taken

25 place here in the United States we would have not only


1 complied with EPA environment regulations but also

2 OSHA and we would have been provided all of the

3 necessary safety equipment to complete that mission.

4 It's interesting to note also that that

5 particular operation, the commanders there, obviously

6 thought less of the protection of their personnel and

7 more about the completion of their mission at hand.

8 During the time frame of July to August '91 there was

9 a chemical spill in which these two chemicals DS2 and

10 STB came in contact with each other. Now, the books

11 and the MSDS sheets tell us that there should have

12 been an explosion, however there wasn't. The soldiers

13 involved in that particular spill are probably

14 fortunate today that they are still alive. Everyone

15 was evacuated and sent down to the 914th Medical

16 Detachment where they were treated for various

17 illnesses.

18 To compound the problem even worse the

19 washing of these chemicals from the damaged containers

20 and the containers that were intact was done by a high

21 pressure hose system. Picture, if you will, a

22 concrete wash rack with approximately 16 slots in it

23 where you have sealand containers and the emptying out

24 of all of these chemicals and the washing of them with

25 the high pressure hose system. They would run off --


1 the water and the chemicals would run off into this

2 manmade pond. It would, in turn, be sucked out by a

3 pump, putting it back through that high pressure hose

4 system.

5 Now, just as an example, what started out

6 as say a million parts of water to one part of DS2 STB

7 reversed itself soon and became a million parts of DS2

8 STB to one part of water. Now, when soldiers get hot

9 and tired during that operation the only way they have

10 to cool off is, of course, a water fight with the high

11 pressure hose, which actually took place. So

12 consequently, all of these soldiers that were involved

13 in this operation were bathed in this solution.

14 Medically, the soldiers from the mission

15 had all sorts of rashes, toenails falling off, strange

16 bumps on their skin, but the thing that really sticks

17 out is the bronchial respiratory infection that lasted

18 for quite awhile and it seemed that everyone involved

19 caught this infection. Of course over there in that

20 country the treatment was cough syrup. Each and every

21 soldier that had anything to do with that mission

22 should have been retained on active duty until it

23 could be proven they were medically fit to complete

24 their duties in the Military or be medically boarded,

25 medically evaluated and/or retired medically from the


1 Army.

2 Of the soldiers of the 164th Maintenance

3 Company there were two other general supply companies

4 involved in this. One soldier in particular stands

5 out today. She has rashes all over her body, every

6 square inch. The Army has offered her an $11,000.

7 settlement and to be put out of the Army. We are

8 still fighting that today.

9 I was released from active duty on 4

10 December '91 and should have been retained. I

11 specifically told them about the chemical spill.

12 Since that time I've had a lot of problems with that.

13 I've developed a rash. I've been given disability by

14 the Veteran's Administration. To this day, the

15 reactive airway disease that I suffer from, the

16 degenerative joint disease, the muscle spasms, the

17 twitches, all of that is still being evaluated, I

18 assume, by the Veteran's Administration.

19 I don't know how many soldiers of the

20 164th have been through the Persian Gulf illness

21 campaign. We do have a way of contacting them and if

22 you will turn to pages 28 through 30 you will see a

23 company roster for the 164th and you will note that

24 there is a large white area blocked out. I've blocked

25 out the social security numbers, but I'll turn those


1 over to an investigator when asked to do so.

2 I think that it doesn't take a rocket

3 scientist to realize that if a soldier left the United

4 States in extremely good health, and that's backed up

5 by an Army physical prior to leaving, and spends some

6 amount of time in a combat zone then returns home with

7 all these problems, that these problems are connected

8 to that soldier's service in that combat zone. The

9 soldier in front of me, the one to my right, the one

10 behind me, we all deserve better. We all deserve more

11 than the government, the Pentagon, the Department of

12 Defense and the Veterans Administration are giving.

13 Their actions, particularly those most recent

14 revelations, they are absolutely unwarranted, they are

15 unnecessary and they are inexcusable.

16 The citizens in the United States have to

17 wonder at some point in time while a handful of people

18 in these governmental agencies are playing god with

19 these soldiers' lives, who is watching them. We as

20 veterans of the Gulf War, we deserve to be fairly

21 compensated if the need be. But what's most important

22 for our illnesses is to be given adequate timely

23 medical care and research. Those are the two most

24 important issues. We don't ask anything more, nor

25 nothing else. Thank you.


1 CHAIRPERSON LASHOF: Thank you very much.

2 We have about two minutes for questions. Are there

3 any questions from the Committee?

4 DR. KNOX: I just wanted to ask, did the

5 members of the 164th when they returned home, did they

6 undergo physical screening in Conus when they

7 returned?

8 KEVIN KNIGHT: It's there in the

9 statement. I skipped over that part in the essence of

10 time -- the interest of time. They went through a

11 basic eyes, nose, ears, throat demobilization physical

12 and then were sent home.

13 DR. KNOX: So none of them were given

14 complete physicals with chest X-rays or --

15 KEVIN KNIGHT: No. None that I am aware

16 of.

17 DR. KNOX: Did they verbalize the

18 experience that they had had at KKMC to call attention

19 to it, or was it noted at that time when they

20 returned?

21 KEVIN KNIGHT: Probably not, because

22 earlier in my statement I told you that none of them

23 had ever been told what these chemicals were and how

24 dangerous they were. It wasn't until I came back from

25 the Gulf and plugged into the Department of Defense


1 Hazardous Material computer that I realized what these

2 were and how dangerous they are. They are corrosive

3 and the chemicals eat tissue is what they do.

4 CHAIRPERSON LASHOF: Thank you very much.

5 KEVIN KNIGHT: Thank you.

6 CHAIRPERSON LASHOF: The next person is

7 Robert Stroud.

8 ROBERT STROUD: Good morning. Before I

9 start I'd like to say that I have a packet with

10 documentation inclusive of all the things I'm fixing

11 to talk about. I am Robert Stroud, a former staff

12 sergeant crew chief on an F1-11 F aircraft. I was

13 stationed close to Saudi Arabia during Desert Shield

14 and Storm from 2 August '90 to 24 March '91. Then I

15 returned to my duty station at RAF Lake and Heath. I

16 moved to a Texas suburb in the Dallas/Fort Worth area

17 about three years ago after I was compelled to leave

18 my aviation career through a reduction in force after

19 11 and a half years as an aircraft mechanic.

20 My symptoms since wartime duty recently

21 accelerated. I have been healthy all of my life and

22 throughout my earlier career. My parents and wife

23 urged me to have a Gulf Registry exam for years, due

24 to persistent ailments I have experienced since the

25 war. I could no longer do my civilian job building,


1 installing and servicing heavy machinery, so I had to

2 quit working on 20 April '96.

3 I started my long journey with the VA

4 Medical Center a month later. Ever since then I have

5 been haunted by another man named Ernest Stroud. He

6 had the same last name and last four social security

7 as mine. He appeared on my lab samples and medication

8 bottles. This problem continued to the point that I

9 tried to locate Mr. Stroud, only to learn from his son

10 that his father passed away in 1987. Through the

11 repeated efforts, through my repeated efforts, this

12 was finally corrected and he is no longer in the

13 Dallas VA Medical Center computer. The only contrary

14 appointment I could locate between his and my own

15 appointments was a no show for a halter test on 9 July

16 '96. I think this appointment should have been mine

17 but I was never contacted. The main reason I have

18 decided to deal with -- this is the main reason I have

19 decided to deal only with the Dallas VAMC, although I

20 live closer to the Fort Worth clinic where this

21 confusion began.

22 I arrived 45 minutes early for my Gulf War

23 registry appointment in case there were any forms to

24 be filled out. Five minutes before my appointment I

25 was given the registry code sheet to complete.


1 Unfortunately, while filling it out, they called me

2 and said I could finish it later. My Persian Gulf

3 exam was conducted by Robert Griffin. He stated, "Mr.

4 Stroud, haven't I seen you before?" I told him we had

5 never met. As he turned around he said, "Well, Mr.

6 Clark ..." I interrupted him, asking who he was

7 talking to. It seems that he had the wrong chart.

8 How disquieting to realize that a doctor with this

9 kind of responsibility has problems keeping his train

10 of thought for a few seconds.

11 My symptoms of chronic fatigue, abdominal

12 pain, bloody diarrhea, shortness of breath, dizziness,

13 muscle and joint pain, night sweats, back pain,

14 unusual amount of cold sores, ringing in the ears,

15 heart palpitations, are listed in Exhibit A of the

16 packet, except for the ones that I have highlighted

17 that were not put on the form. I explained the

18 experience of my heart racing 200 beats per minute.

19 I finished the code sheet after he completed the exam.

20 I had the nurse call Dr. Griffin back out to ask about

21 the heart problem. Eventually a cardiology consult

22 was set up as well as ones for gastro, infectious

23 disease and a chest X-ray. I have discovered they

24 have been charging me and my insurance for these

25 consults from the exam. It's now over $400. each and


1 they want me to go through Phase Two.

2 In the infectious consult, which is

3 Exhibit B, I was asked if I had ever been tested for

4 AIDS. That was done in 1992 when I left the Military.

5 I asked the doctor if he had heard of mycoplasma

6 incognitus. He said he would consult his findings and

7 that the head physician would probably want to talk to

8 me. The head physician, Dr. Smith, wanted to know if

9 there were any signs of mental disorders. I told him

10 there was no history of mental illness in my family,

11 "I am trying to find my way back to health once again

12 to support myself."

13 On the bottom of this form he states, "He

14 has a good attitude and needs vocational rehab." I

15 discussed the likelihood of mycoplasma incognitus with

16 Dr. Smith. He wanted to know where I had heard about

17 it. I told him my source was irrelevant. I asked if

18 the VA had the capability to do the DNA PCR test

19 required. He explained they had the capability for

20 microplasma pneumonia but not the other. My sources

21 tell me if they can do one, they can do the other.

22 Exhibit C consists of documentation on this subject.

23 The next challenge was my gastro consult.

24 I find it hard to understand how a physician,

25 supposedly trained to do a procedure, has to get a


1 second physician to show him how to operate the scope

2 properly. Dr. Jane had already made several attempts

3 before consulting the other doctor. The nurse pointed

4 out an area that looked abnormal, so biopsies were

5 taken and they said that they were normal. This is in

6 Exhibit D, and I would like for you to note the

7 difference between the two diarrhea descriptions

8 between one being bloody and one being non-bloody.

9 There is some controversy about a halter

10 test given to me this summer. Dr. Shapiro reviewed

11 this test on 26 June '96. I still have not received

12 a personal consultation to date, only conversations

13 over the telephone. The VA tries to convince me that

14 these results are normal. Exhibit E shows my heart

15 ranging from 42 to 125 beats per minute during the 24

16 hour period that I wore the tape recorder and

17 electrodes when sleeping, resting or just walking

18 around the house. I tried to obtain the reading

19 through routine VAMC check-in. Dr. Simms retrieved

20 data once again on Ernest Stroud, who was a no show on

21 9 July of '96. I think the appointment once again

22 should have been mine. Dr. Simms kept asking if I was

23 sure that I wore a halter monitor and suggested that

24 I had the results given to me by the doctor at Fort

25 Worth. There is no way that you can mistake wearing


1 this device. I explained to him I had several

2 problems justifying my records being transferred to

3 Dallas. After the long dispute, I became disgusted

4 with the abuse and told him that I would not be seeing

5 him that day. His statement in my file is inaccurate.

6 My sources tell me the normal range for an

7 adult is 60 to 100 beats per minute. One civilian

8 cardiologist suggested that I may be having problems

9 with the electrical impulses that control the heart.

10 The triple board certified physician who performed an

11 examination for Social Security disability said that

12 I may be having problems from central vertigo and

13 adynamic instability.

14 I recently found this in the June '94

15 letter, VA letter from Washington, D.C. I broached

16 this with Dr. March Nelson, the Chief of Gulf Veterans

17 Examinations, who also heads ambulatory care. He

18 stated to me they decide from the list what is

19 clinically appropriate. This is not what the letter

20 describes in detail. Once again, a general note does

21 not discuss my crucial heart problem.

22 After four months of haranguing and

23 confusion I am still not satisfied with either the

24 medical competence or scientific findings at the

25 Dallas VAMC. My difficulty seemed typical to the site


1 where other veterans' complaints are similar to mine.

2 I have volunteered to help organize a support group in

3 north Texas for Gulf veterans although we receive very

4 little cooperation from the VA facility that is

5 considered to be one of the top five in the nation.

6 Why must a veteran keep the VA straight on what they

7 are supposed to be doing? Do we have Agent Orange

8 once again? If so, we'll be speaking again in about

9 20 years, if we survive that long. But we need

10 answers now. Thank you.

11 CHAIRPERSON LASHOF: Thank you very much.

12 We have about two minutes left for questions. If not,

13 thank you very much.

14 ROBERT STROUD: Thank you.

15 CHAIRPERSON LASHOF: Cathleen McGarry.

16 CATHLEEN McGARRY: Ms. Chairman, members

17 of the Presidential Advisory Committee, I am Cathleen

18 McGarry, a Persian Gulf War Veteran, who has been

19 suffering from multiple illnesses since serving in the

20 Persian Gulf War. In order to bring you up to date,

21 I began experiencing numerous health problems after

22 the bombing of Jubayl and progressed to becoming

23 totally disabled. However, I have such a lengthy

24 diagnosis of medical problems I will only begin to

25 touch the surface and it would be unrealistic to think


1 that I could convey all the pain and suffering I have

2 experienced since serving for my country in the

3 Persian Gulf War.

4 Prior to enlisting in the United State

5 Army, I graduated from Butler University in 1986 with

6 a Bachelor's of Science degree in Physical Education.

7 I have a steady employment history and at times even

8 worked two or three jobs. I have coached soccer and

9 track at the junior and senior high school levels. I

10 substitute taught in New York, as well as being a ski

11 instructor at a local ski area. I was also a seasonal

12 Park Ranger Assistant in Harriman State Park for eight

13 years.

14 I enlisted in the United States Army on

15 January 3rd, 1989. Continuing to excel in athletics,

16 I received the Soldier of the Cycle Award in Basic

17 Training and scored 290 or above on almost every

18 physical training test, to include scoring the maximum

19 score of 300 on my last physical training test. I was

20 deployed with the 519th Military Intelligence

21 Battalion on October 23rd, 1990 to Saudi Arabia. Our

22 first deployment was to the ACBI compound (Arabian

23 Chicago Bridge Inc.) near Dammam. I began

24 experiencing mostly urinary tract infections after the

25 bombing of Jubayl. In January 1991 my team moved to


1 a forward position at KKMC (King Khaled Military City)

2 with a company rendezvous in Riyadh. The Dragon Fix

3 team located near the Patriot Missile Battery

4 experienced a white-grayish like powder sand which

5 soiled their clothes, their equipment and their boots.

6 Everything developed a fine layer of dust. On January

7 13th, 1991 Lieutenant Gonzales and I hand carried

8 intelligence information from various collection teams

9 pertaining to enemy units, including SCUD units, that

10 were a direct threat to soldiers on the front line, as

11 well as my team at King Khaled Military City. After

12 arriving at the French Headquarters near Rafha, I

13 attended a briefing where certain enemy units and

14 likely threats had been identified, at which time we

15 were still informed that the Iraqi's were not using

16 their chemical, nuclear or biological warfare systems.

17 We were not informed about any exposure events. The

18 next morning the Lieutenant and I proceeded to our

19 destination, Team Autovant, north of the French

20 Headquarters along the Iraqi and Saudi Arabia border.

21 From the guard point, using binoculars, I could see

22 the Iraqi bunkers across the desert.

23 My team, consisting of approximately 25

24 soldiers, experienced the SCUD attacks at KKMC on

25 January 19th, 1991. I was standing at the guard point


1 with several others when the attack occurred. During

2 the first week of the ground war, after the attack on

3 KKMC, I was medivac'd by military vehicle to a MASH

4 unit within King Khaled Military City. I was

5 suffering from a fever, nauseousness, vomiting, eyes

6 swollen shut, vaginal infections, and blood in my

7 urine. I was treated, put on antibiotics, released,

8 given quarters and sent back to my unit. Within a few

9 days after the bombing of KKMC, every single MOPP suit

10 was collected and new ones were distributed to the

11 team, even though no explanation was given to us. Our

12 company also had one soldier airlifted from Team

13 Autovaunt, in the vicinity of Rafha. He was given

14 several pints of blood before they reached the

15 hospital in Riyadh. He was in critical condition and

16 remained in Riyadh until his condition stabilized.

17 Then he returned to the United States.

18 During the War, we had been informed that

19 chemical, nuclear and biological weapons were not

20 used. However, now all the evidence confirms not only

21 the presence of these elements but the widespread

22 usage identified in the Reagle Report dated May and

23 October of 1994. Therefore, the 525 Military

24 Intelligence Brigade, which intelligence efforts

25 support the French, the 82nd Airborne Division, the


1 101st Airborne Infantry, and the 1st Calvary, received

2 widespread low-level exposure. I have a close friend

3 who is a retired First Sergeant from the 82nd Airborne

4 Division. He too is suffering from undiagnosed

5 illnesses. He has pictures of the explosions of the

6 ammunition bunker that was just recently identified by

7 the Department of Defense.

8 As part of a rear deployment team, we were

9 permitted to take a bus trip from the ACBI compound in

10 Dammam north towards Kuwait City through the border

11 town of Khafji, passing the burning oil fields and

12 into Camp Freedom, where we took photographs of bombed

13 Iraqi vehicles. We saw Iraqi bunkers and even crates

14 or piles of live Iraqi ammunitions. During our trip

15 we were given no instructions to wear any protective

16 gear. From the map in the Reagle Report, which

17 identifies 15 areas of direct exposure events, I have

18 personally been to 12 of the 15 locations and been in

19 the vicinity of six of those exposure events. I

20 either heard a loud sonic boom, felt the ground shake

21 in tremors, watched dark nights being illuminated, to

22 actually seeing the missiles in the sky. My entire

23 brigade, the 525 Military Intelligence Brigade, was

24 deployed in the vicinity of all 15 areas of direct

25 exposure events, in addition to receiving further


1 exposures during the actual ground invasion of Iraq in

2 Liberation of Kuwait. The rear deployment team,

3 consisting of approximately 50 soldiers, was

4 responsible for washing and scrubbing 210 military

5 vehicles for Customs Inspections. Once again, we were

6 given no orders to wear protective gear. After the

7 War, the 525 Military Intelligence Brigade received

8 unit citations, awards, and individual medals for

9 positive location of enemy units, including enemy SCUD

10 units most likely responsible for the bombings of

11 Rafha, the barracks in the vicinity of Dammam and

12 others. Even though there are other events, these are

13 the most prominent in my mind.

14 In conclusion, I feel that it is necessary

15 to identify some of my health problems which prevented

16 me from even completing a two-hour comprehensive

17 physical examination which has me being completely

18 disabled at a sub-sedentary rate. My medical

19 diagnoses include fibromyalgia, myalgia, irritable

20 bowel syndrome, irritable bladder as well as urethra,

21 interstitial cystitis, cystic breasts and lymph nodes,

22 chronic fatigue, gastritis, duoditus and colitis.

23 Imagine having a Bachelor's of Science degree in

24 Physical Education and being very athletic to

25 presently not being able to lift three pounds without


1 becoming dizzy, nauseous and experiencing a great deal

2 of pain. This year, from the beginning of April

3 through July, I experienced eight menstrual cycles.

4 Unbelievably, I am only rated at a 30 percent service-

5 connection by the Department of Veteran Affairs.

6 I stand before you now to speak for all

7 those Americans that defended our country during the

8 Persian Gulf War, and family members who are ill and

9 suffering. We all served together and were willing to

10 die for our country. Americans are suffering and

11 dying as a result of exposure during the Persian Gulf

12 War. I firmly believe it is time for us to speak out

13 and let our country take care of its own. Thank you.

14 Any questions?

15 CHAIRPERSON LASHOF: Thank you very much.

16 DR. KIDD TAYLOR: Are you currently

17 working at all now?

18 CATHLEEN McGARRY: Yes. I am working

19 part-time in a physical therapy office in West Palm

20 Beach.

21 CHAIRPERSON LASHOF: Any more questions?

22 CATHLEEN McGARRY: There's one other thing

23 that I'd like to bring up concerning some of the

24 exposures, especially with the intelligence units. We

25 had a very expensive system that had over 15 different


1 antennas that had the magnitude to cause sterilization

2 if you were in contact with it while it was

3 transmitting. We were at KKMC. We had units with

4 these magnetic fields all over Saudi Arabia. They are

5 not even addressing the fact that the intelligence

6 units might have a more contrast effect because of the

7 magnetic field that we were in when the exposure

8 events took place.

9 CHAIRPERSON LASHOF: Thank you very much.

10 CATHLEEN McGARRY: Thank you.

11 CHAIRPERSON LASHOF: William Northrop.

12 WILLIAM NORTHROP: Good morning, ladies

13 and gentlemen. If the committee pleases, Suzanne

14 Migdall will make our statement this morning.

15 SUZANNE MIGDALL: Good morning, ladies and

16 gentlemen. My name is Suzanne Migdall. William

17 Northrop and I are the authors of the book Sandstorm

18 which is a military history based on the experiences

19 of 20 American women soldiers who fought in the Gulf

20 War.

21 In researching and telling the stories of

22 these 20 American veterans, we have found that all are

23 suffering to one degree or another from the Gulf War

24 Syndrome. We also found that we could not write their

25 stories without including the Syndrome, which has in


1 many cases become the major focus in their lives.

2 So we want to share with you our

3 observations on the scope of the problem and the

4 general symptomatology among our women vets. Keep in

5 mind that we don't hold ourselves out as experts on

6 female veterans, but I will mention that we

7 interviewed almost 300 women to select the 20 for this

8 book. I would submit that this qualifies us to have

9 some insight into the problem.

10 Our women veterans range in present age

11 from 25 to 51 years. Their average age during the war

12 was 30. The common symptomatology across the board

13 seems to be immune system damage, along with an

14 alarming decrease in natural killer cells, followed on

15 by a cornucopia of ailments. Something is playing

16 havoc with their immune systems. Chemical

17 sensitivities, allergies and flu-like upper

18 respiratory infections usually set in first. Then

19 begins the entire liturgy of symptoms common to all

20 Gulf War vets. Further because they are female,

21 reproductive system problems are manifested early on.

22 Most of our veterans are not having additional

23 children, some by choice, some not.

24 Their medical history show numerous

25 incidences of benign tumors, spiking fevers and


1 abnormal sweating. An inordinate proportion of our

2 women have had their gallbladders removed, along with

3 some gastro-intestinal problems. We have complaints

4 of strange bleeding. This, according to the medical

5 people involved, is not dissimilar to E-coli

6 Hemorrhagic Syndrome, normally associated with E-coli

7 0157H7.

8 We see the symptoms of Toxic Shock

9 Syndrome, organophosphate exposure and Anthrax.

10 Additionally, we are seeing a high incidence of

11 Epstein-Barr antibodies, including the presence of the

12 virus responsible for Brickett's (phonetic) Lymphoma.

13 Finally, we have had three children born since the

14 war. Two suffer from birth defects, and one is

15 normal, thank God.

16 Based on the medical data of our 20 women

17 and other sources, we have drawn a conclusion. Our

18 veterans were exposed to something out there that

19 attacks the immune system, leaving them open to

20 opportunistic infections.

21 Further, we believe that the original

22 agent is biological in nature because in case after

23 case the veteran's immediate families fall immune with

24 immune system damage. Whatever it is travels on

25 equipment and clothing and is infectious from the


1 veteran.

2 In the midst of all this gloom, we have

3 had one resounding success. One of our women, an RN

4 from Michigan National Guard, was cured of most of her

5 symptoms by a homeopath. Amazingly, that veteran

6 experienced immediate relief after five years of

7 suffering when she was administered Anthracene, the

8 Civil War remedy for Anthrax.

9 On a practical basis, the significance of

10 the syndrome, applied to the women veterans, is this.

11 That it is attacking a portion of our American child-

12 bearing generation. Looking at the scope of the

13 problem, our research indicates that it is a great

14 deal more widespread than we originally thought. If

15 one factors in the 650,000 veterans and their spouses,

16 spouses-to-be and significant others, the numbers are

17 running 1.2 million Americans. Add another 650,000

18 representing one child per couple and the figure

19 reaches 1.8 million. This does not factor in

20 casualties from their extended family. If we add

21 another 1.2 million representing the extended

22 families, the figure hovers around 3 million

23 potentially exposed to the syndrome. We are including

24 approximately 3,000 civilian contractors employed by

25 the DOD in Saudi Arabia during the war, but this


1 figure does not include the thousands of refugees from

2 the region consisting in the main of former Iraqi

3 POW's and their families who have been resettled in

4 the United States. We simply do not know these

5 numbers.

6 We have recently been in touch with a

7 number of American employees of Saudi Aramka

8 (phonetic). During the Gulf War these employees had

9 a choice. They could go home and lose their jobs or

10 they could stay on. Their immediate families were

11 given the choice of evacuation at their own expense,

12 after paying a $200. per person war tax. Most chose

13 to stay.

14 In our research we are now finding that

15 the Gulf War Syndrome is sweeping through this ex-

16 patriot community. In the four main concentrations

17 within Saudi Arabia we have attempted to look at

18 Tannruah where there are some 2,000 people in the

19 community. The story is the same. The oppressed

20 immune system and the usual follow-on illness. Since

21 the war they have had 19 cases of Graves Disease,

22 eight premature deaths among the men, eight

23 hysterectomies, increased levels of cancer,

24 particularly Brickett's Lymphoma, brain and breast

25 tumors, and a high incidence of Lupus. They also have


1 the other classic symptoms of the Syndrome.

2 More significant, we believe, is a report

3 of that American ex-patriot community of the deaths of

4 seven indigenous workers family. The cause has been

5 called by their medical personnel untreated pulmonary

6 Anthrax. We are currently awaiting information on

7 this, but if it proves out, the Gulf War Syndrome

8 issue may take another turn, indicating that the post-

9 war environment in the region may well be hazardous to

10 our troops currently deployed there.

11 Additionally, we have been in touch with

12 the government of the Islamic Republic of Iran. As a

13 result of their eight year war with Iraq, their

14 veterans are suffering a similar symptomatology to

15 ours, although in greater numbers. In contacting the

16 Iranians we felt we might get a view of where the Gulf

17 War Syndrome is headed within our own veteran

18 population. We must add that the Iranians have been

19 both sympathetic, helpful and forthcoming with

20 information in their concern for the welfare of our

21 veterans as well as theirs. The contrast with the

22 American government's reaction to this problem is

23 self-evident. The recent revelations about the

24 exposure of our troops to chemical weapons is long

25 overdue. Frankly, it came as no surprise to the


1 veterans' community, and without full disclosure from

2 our government this siege will continue. In spite of

3 this 11th hour dose of honesty by the Pentagon, the

4 conventional wisdom holds that we are looking at even

5 more. As you know, chemical poisoning does not

6 generally cause fevers, and too many spouses and pre-

7 war children are coming down with this syndrome to

8 ignore the biological aspects.

9 In closing, let us belabor a point. In

10 July of 1976 there was an outbreak of what turned out

11 to be viral hemorrhagic fever in two villages located

12 in Zaire's northern frontier on the banks of the Ebola

13 River. There were 284 cases resulting in 151 deaths.

14 The World Health Organization led by our own CDC in

15 Atlanta utilized three labs, 500 investigators, the

16 foreign ministries of 10 countries, the militaries of

17 8 countries at a direct cost of 10 million dollars

18 spent over a period of 5 months to handle the problem.

19 In outbreak after outbreak this country

20 has rallied our considerable resources to find the

21 culprit. For Lhassa Fever that killed 13 in Nigeria,

22 for Toxic Shock Syndrome that killed 110 in Wisconsin

23 and in Minnesota, for Legionnaire's Disease that

24 killed 59 in Philadelphia, and for the Muerto Canyon

25 Hanta Virus that killed 32 in the Four Corners Area in


1 1994.

2 With 3 million Americans at potential risk

3 here, the Iraqi immigrant community in this country,

4 the American ex-patriot population in Saudi Arabia,

5 the veterans from the coalition nations and the

6 American soldiers currently deployed in the Gulf, not

7 to mention the civilian populations of Saudi Arabia,

8 Kuwait, Iran and Iraq, it is clear that we need a

9 national epidemic investigation. Let me repeat that.

10 We need a national epidemic investigation.

11 It seems to us that this would be a great

12 deal more cost-effective than the present catch us,

13 can't catch, can situation. What is so shocking to us

14 is that this type of investigation is not currently

15 under way. Thank you.

16 CHAIRPERSON LASHOF: The time has expired,

17 but if anyone has a question we could take maybe one

18 question. No? Thank you very much. Scott

19 Vanderheyden.

20 SCOTT VANDERHEYDEN: Madam Chairman,

21 members of the Committee, thank you for giving me the

22 opportunity to speak today. My name is Scott

23 Vanderheyden, a United States Marine who served in the

24 Persian Gulf from January of '91 to August of '91. I

25 am the newest staff member of an 18 year old


1 organization called Vietnam Veterans Agent Orange

2 Victims, Inc. We are a 501C3 not for profit

3 organization. Our mission is to conduct case

4 management to sick veterans, their families and their

5 children. These children have medical needs that

6 range from birth defects and chronic health problems

7 to learning disabilities.

8 Direct assistance provided has ranged from

9 purchase of prosthetic devices and reconstructive

10 surgery to educational tutoring and counseling. To

11 date we have provided specific programs for more than

12 30,000 veterans and their families. Most of the

13 veterans we have provided services for are those who

14 have slipped through the cracks of the VA and have

15 turned to us as a last resort. VVAOVI fills a void

16 that no governmental agency wants to take

17 responsibility for.

18 Our organization thrives because of the

19 incompetent policies of the VA and the DOD when it

20 comes to treating sick veterans and their children.

21 It should be a crime that my organization is allowed

22 to survive because of this.

23 As news of our sick returning Gulf vets

24 began to surface, Vietnam Veterans Agent Orange

25 Victims felt compelled to provide assistance to this


1 new generation of veterans. For the last four years

2 our goal has been to embrace the Gulf War veteran and

3 their family members and provide the same outreach

4 referral, advocacy support and direct services that

5 we've been providing for the Vietnam veteran and their

6 families.

7 Historically this country has forgotten

8 about its sick veterans. From the Civil War to the

9 Persian Gulf, veterans who have returned home sick

10 have been slighted. This country's policy of caring

11 for its returning veterans needs to be re-evaluated.

12 We as a country can not expect the next generation of

13 veterans to go off to war and fight for what is right

14 if we can not clean up after the last war.

15 In recent months the Pentagon has

16 indicated that it has known since November of '91 that

17 troops in the Persian Gulf were exposed to chemical

18 agents. On September 18th, 1996 they announced they

19 would be contacting over 5,000 troops it believes were

20 exposed to nerve gas in an effort to evaluate their

21 medical conditions. What about the veterans exposed

22 to "border-line life-threatening concentration of

23 chemical agents" identified several times in KKMC or

24 the many task force reported exposures in the Dhahran

25 incidents? What about the dozens and dozens of other


1 reported exposures?

2 My organization believes the Pentagon

3 should be contacting the over 3.5 million veterans

4 that deployed to the region between '91 and '94, not

5 just the 5,000. For five and a half years veterans

6 world-wide have been coming forward with more and more

7 information of chemical exposures. Most of the

8 outreach and concern has been focused on those who

9 have served in the Kuwait and Saudi Arabian theater of

10 operations, where the majority of our troops were

11 positioned.

12 It is vital, absolutely vital, that this

13 committee does not forget about those troops who

14 served in Operation Provide Comfort in the north.

15 Many of these troops have reported a possible chemical

16 attack north of Iraq. Some time in May of '91 at

17 blocking position number 8, an Iraqi helicopter made

18 four passes over a Marine Corps unit spraying a fine

19 mist, a mist that some veterans believe was nerve gas.

20 VVAOVI has been trying to locate these marines to

21 evaluate their current health status. This incident

22 was reported to the DOD's incident hotline months ago.

23 Veterans eagerly await some kind of answer from the

24 government about this attack. To date, no information

25 has been provided and no after-action reports


1 -- and after action reports are nowhere to be found.

2 I believe that with the Committee's help this incident

3 should be investigated in depth.

4 This is the age of accountability. As the

5 debate rages on, and it will for years to come, Gulf

6 War veterans and their families need to be serviced

7 now by giving them the benefit of the doubt. As this

8 entire country continues to argue about the Gulf War

9 Syndrome issue, let us remember that right now as we

10 speak Gulf vets continue to die, continue to be

11 unemployable, medical bills continue to grow and

12 families continue to suffer. These veterans need

13 direct services now. Productive legislation needs to

14 become a reality today, not tomorrow, and not two

15 decades from now as we saw with the Vietnam veterans.

16 Our current priority is a major ongoing

17 outreach campaign where we are seeking out Gulf War

18 veterans to collect individual statistical data. We

19 are collecting data from a medical questionnaire

20 specifically designed for Gulf War vets. Our

21 statistics are constantly changing as we send and

22 receive questionnaires every day. The questionnaire

23 is filled out and sent back to us or data is gathered

24 over the phone. Our goal with the questionnaire is to

25 get a general overview of our veterans' health status


1 and to educate and inform them of new developments.

2 The government's efforts of outreaching

3 and funneling information to the individual veteran

4 has been unsatisfactory. Too many Gulf War veterans

5 have no idea of where to turn for help. Most Gulf War

6 veterans are educated and informed through the efforts

7 made by the National Gulf War Resource Center, the

8 National Alliance of Veterans Family Service

9 Organizations and congressionally chartered veterans

10 organizations such as the American Legion and the

11 Veterans of Foreign War.

12 I know the DOD and the VA have used a

13 number of techniques from hotlines and internet sites,

14 to public service announcements and newsletters, but

15 the fact is, is that the information is not reaching

16 the individual veteran. I strongly recommend that the

17 DOD and the VA coordinate with Veterans organizations

18 such as VFW, the American Legion, the DAV and Gulf War

19 grass roots organizations to outreach these vets.

20 There are an endless array of networks and channels

21 waiting to be tapped into that would greatly increase

22 productive and direct outreach to these vets and their

23 family members.

24 I have spoken to platoon commanders,

25 company commanders, time commanders and executive


1 officers, and not one of them -- not one of them could

2 tell me what the Persian Gulf War Registry is or where

3 one of their sick troops could turn for help. This is

4 an enormous embarrassment to the government's outreach

5 efforts.

6 The American medical community is one who

7 likes to conduct studies which lead to more studies.

8 We literally risk studying Gulf War syndrome to death,

9 just as we have done and continue to do with the

10 Vietnam veterans suffering from health problems

11 associated with the exposure to Agent Orange.

12 On May 28th of 1996 President Clinton

13 announced that Vietnam veterans afflicted with

14 prostate and acute and subacute peripheral neuropathy

15 were entitled to disability payments based on their

16 Agent Orange exposure 20 years after the war. On

17 September 24th '96, satisfied of a possible link

18 between Agent Orange and birth defects, President

19 Clinton signed a landmark new law that will give

20 Federal benefits to Vietnam veterans' children who

21 suffer from spina bifida, marking for the first time

22 in history that a child of a veteran can now be rated

23 as service connected 20 years after the war.

24 Is this the future of our Gulf War

25 veterans? Will we have to wait 20 years? It is if we


1 continue on the current path. Gulf War Syndrome is in

2 fact a mirror image of the Agent Orange issue.

3 Adequate and unconditional medical treatment should be

4 given to every sick Gulf vet. The VA should establish

5 case management services for the veterans' families

6 and the policy of treating only the veteran should be

7 eliminated.

8 Vietnam Veterans Agent Orange Victims is

9 dedicated to improving the lives of our Gulf War vets

10 and their family members. We will continue to do

11 whatever it takes to achieve this goal. We will push

12 forward until the VA accepts the moral obligation of

13 doing what is inscribed on the wall of the Washington,

14 D.C. VA and I quote, "To care for him who shall have

15 borne the battle, and for his widow and his orphan."

16 If they can not accept this responsibility, then this

17 hypocritical quote should be chiselled off the wall

18 and replaced with, "To dishonor him who shall have

19 borne the battle, and to forget his widow and his

20 orphan."

21 Members of the Committee, this is the

22 reality, this is the crime. In closing, I'd like to

23 add two days ago I met with a gentleman who was

24 stationed in Northern Iraq who believes he was exposed

25 to chemical agents in that area. I think that the


1 Committee, with the help of the Persian Gulf

2 investigating team -- I think this definitely needs to

3 be looked into in depth. It's something that has not

4 been addressed as of today.

5 CHAIRPERSON LASHOF: Thank you very much.

6 We have time for a few questions. Are there any

7 questions?

8 DR. KNOX: If you could change anything

9 about the outreach program that the VA has to offer,

10 what would you do instead?

11 SCOTT VANDERHEYDEN: I definitely believe

12 that the government needs to coordinate with these

13 veterans' groups. The veteran groups are able to

14 touch literally every community from the ghettos to

15 the mountain tops. They could reach any veteran that

16 they want at any place in the country and overseas.

17 So I definitely think they need to coordinate better

18 with them.

19 In closing too, I'd like to also present

20 a structure of my organization with the hope that it

21 will benefit your recommendations to President Clinton

22 concerning health care to veterans.

23 CHAIRPERSON LASHOF: Thank you very much.

24 We'll take the material so submitted. Jeffrey Ford.

25 JEFFREY FORD: Good morning. My name is


1 Jeffrey S. Ford and I reside in Kansas City, Missouri

2 with my wife and two children both born before the

3 Gulf War. I served in the United States Army from

4 October 28th, 1988 to July 13th, 1992. My

5 occupational specialty was that of Combat Engineer and

6 Supply Specialist. Other duties included Company

7 Commander's Driver, Unit Armor, NBC and Field

8 Sanitation NCO. I was assigned to Headquarters

9 Company 307th Engineer Battalion 82nd Airborne

10 Division during Desert Shield and Desert Storm.

11 During Operation Desert Shield I performed

12 primarily supply and operation duties, however during

13 Operation Desert Storm I was assigned to the assault

14 and barrack platoon in support of Alpha Company 307th

15 Engineers First Brigade of the 82nd Airborne Division.

16 My mission for the ground war was to transport, via a

17 five-ton dump truck and employ as needed, 800 land

18 mines and a mine clearing line charge.

19 By the halt of defensive operations we had

20 reached Tall Afar Airfield in south-central Iraq. The

21 morning of March 4th, 1991 myself and members of the

22 307th destroyed three large cachets of bombs just

23 north of the airfield at Tall Afar. Those bombs were

24 American, French and Russian. That afternoon we moved

25 to Kamisiyah as the 37th engineers had finished


1 priming the 43 bunkers inside. We positioned

2 ourselves on the banks of the canal alongside of the

3 road leading into the facility.

4 We climbed on top of our trucks to watch

5 the detonations. The explosions were very large with

6 considerable shock waves. After the initial charges

7 went off there were many secondary explosions that

8 followed, and within minutes rockets began propelling

9 out of the bunkers that were not totally destroyed.

10 The first few went overhead, but then they began

11 falling on us. I jumped from the top of a five-ton

12 dump truck to hit the ground. All soldiers began

13 scrambling for cover, however there was none as we had

14 not adequately anticipated the hazardous potential of

15 such a large single detonation.

16 I saw several rounds land within 20 feet

17 of US personnel. Although many of the engineers were

18 in possession of demolition materials, myself and

19 another soldier took cover under the engine block of

20 my truck to avoid shrapnel. The engineers of the 37th

21 loaded up their vehicles and evacuated the area. We

22 were told however by our Alpha Company commander on

23 site that we would be staying. No reason was given

24 and we followed the order.

25 The cloud continued to grow long after the


1 other units left. I remember the sun setting at our

2 backs in the late afternoon. The plume of smoke soon

3 mixed with an approaching storm front and soon the sun

4 was blocked off. I haven't been able to recall

5 anything else from that afternoon, however my next

6 recollection was performing guard duty at

7 approximately 1 o'clock the next following morning.

8 We blocked and restricted traffic to the

9 bunker complex and secured the area. I recall

10 explicitly that the bunkers continued to burn

11 throughout the night, as well as rockets flying out

12 although with less frequency. I have no knowledge of

13 close proximity impacts as night conditions deterred

14 visibility.

15 The next morning I woke to find it was

16 raining. The complex continued to burn, with

17 secondary explosions as described the night before.

18 We moved to protective cover in a building in the town

19 of Tall Afar, nearly 24 hours after the initial

20 detonation. I do not recall anyone I was in contact

21 with as having displayed acute symptoms of nerve agent

22 poisoning, however many were very agitated.

23 Later that afternoon we pulled back to

24 Tall Afar as the complex continued to burn and we

25 could not continue the mission. Within a day or so


1 later we returned to Kamisiyah to continue operations

2 as the two EOD men had given the all clear to re-

3 enter. I began hauling tons of C4 that was air-lifted

4 to us and we ran -- we ran out and we used Iraq

5 materials confiscated by the 37th engineers.

6 Alpha company 307 engineers blew the

7 warehouses, BRAVO Company, and the 37th engineers

8 focused on the bunkers. As I drove throughout the

9 area delivering demolition supplies to all the units,

10 I saw shrapnel and unexploded ordinants strewn all

11 over the ground. I ran over rockets, shells and

12 casings. Some were split open and leaking their

13 contents on the ground. I ran over a few by accident,

14 as they were heavily concentrated, perhaps one every

15 10 feet or so. We worked in Kamisiyah during the day,

16 stayed at Tall Afar at night.

17 I must make these next few points very

18 clear. At no time was I aware of any chemical alarms

19 either being deployed or having sounded off. At no

20 time did I don any chemical protection gear

21 whatsoever. At no time did I see anyone conduct any

22 chemical testing, nor throughout the entire operation

23 was I aware of any specially trained chemical

24 personnel in the area. In fact, I knew nothing of

25 chemicals having been at Kamisiyah until I saw it on


1 60 Minutes.

2 I might also note that I have never met

3 Mr. Brian Martin of the 37th Engineer Battalion,

4 however I have read his testimony from the Chicago

5 meeting, and I must say that his claims are true and

6 correct, based on my own personal experience.

7 I'd also like to point out an expert from

8 the NBC logs pertaining to criteria concerning

9 chemical emissions and their disposal throughout the

10 theater. On the 27th of February, 1800 hours, the EOD

11 of NBC agents ammunitions, they feel the destruction

12 of small quantities using field method is okay. Bulk

13 destruction is not approved because it may have great

14 international implications, more guidance to follow.

15 For the time being, both must be secured and wait

16 further instructions.

17 There was no other mention or instructions

18 given in the logs that we have which follow up to the

19 night before it was blown.

20 My concentration problems began on my

21 return to Fort Bragg, especially when driving. I'll

22 try to shorten it up somewhat. I went, on September

23 17th, 1996, to the VA Medical Facility in Kansas City,

24 Missouri for my Persian Gulf Registry exam. I

25 described my symptoms at the time, and I also informed


1 the doctor at the time that I was two miles away from

2 the chemical explosion and possible exposure. It

3 didn't raise an eyebrow and I was basically given a

4 routine blood test, urinalysis and chest X-ray,

5 referred to mental hygiene and sent home.

6 I went to the hospital administration to

7 inform them of the inadequate exam, and basically was

8 told that to this date the protocol hasn't changed.

9 I was given quite a bit of support to come down here

10 and let you all know that.

11 I would also like to relate my experience

12 with the Persian Gulf Incident Hotline I called on

13 August 28th of this year to give a report to an

14 obviously untrained phone worker. I had to explain

15 many simple military concepts and spell the words as

16 the worker had no idea what I was talking about,

17 except for the statement that she was given to read.

18 I was insured the investigative team would call me for

19 a more detailed report. However, after several weeks

20 I had heard nothing, so I called back to inquire. I

21 was ensured that my report was on file. I was read an

22 excerpt and was assured that it had been forwarded to

23 the team. However, after placing a transcript of the

24 report on my Internet website, I received a call from

25 another worker from the team stating that they had no


1 record of my previous report and would I please give

2 it again.

3 I once again gave the report on my own

4 experience at Kamisiyah. I must again question the

5 competency of the worker as I was asked if I saw

6 anyone conduct an M256 chemical test after I had

7 already stated there was no chemical warning and no

8 one put a mask on. It would seem ridiculous to me to

9 conduct a test for a nerve agent with no protection

10 equipment donned.

11 In conclusion, I do not understand why the

12 Pentagon continues to misinform the American public on

13 these health issues. We must have authorization and

14 appropriations provided for the presumption of service

15 connection for all Gulf War veterans for injuries and

16 diseases related to chronic neurological and

17 immunological diseases, funding for independently

18 reviewed non-governmental research into the course and

19 consequences of illnesses related to the hazardous

20 exposures during the war, ongoing studies by the

21 National Academy of Sciences, Institute of Medicine,

22 and Centers for Disease Control, a large-scale

23 independent peer review epidemiological study on Gulf

24 War veterans deployed, Department of Defense

25 civilians, contractors, veterans' families, including


1 incidences of birth defects and miscarriages.

2 We must establish an independent

3 commission with investigative authority to conduct a

4 civilian review of US chemical and biological warfare,

5 defense capabilities to issue the surrounding

6 perceived inadequacies of US doctrine in this area,

7 with the goal of identifying shortfalls in chemical

8 and biological defense, restoring competence among

9 active duty personnel and the capabilities of

10 detection and protection equipment and to provide for

11 congressional oversight to ensure that current Gulf

12 War related legislation is effectively administrated.

13 Thank you.

14 CHAIRPERSON LASHOF: Thank you very much.

15 The 10 minutes has expired. One question.

16 MR. RIOS: When you were witnessing the

17 explosions at Kamisiyah, was anybody wearing the mock

18 gear?


20 DR. CAPLAN: Just for clarity, how far

21 were you from the explosion then, distance-wise?

22 JEFFREY FORD: I was at the canal

23 approximately two to two and a half miles from the

24 bunker complex where the videotape footage was shot.

25 CHAIRPERSON LASHOF: Thank you very much.


1 JEFFREY FORD: Thank you.


3 WALLACE HEATH: Good morning, ladies and

4 gentlemen. My name is Wallace Heath. I'm from here

5 in Tampa, Florida. I'm a Gulf War vet, also a Vietnam

6 air vet. I served in the Persian Gulf from January

7 1991 to July 1991. I got sick while I was over there,

8 I was treated for chronic lung problems, for gastro-

9 intestinal problems and for the diarrhea. I spent

10 most of my time in KKMC in Kuwait City. I also was

11 part of the Red Crescent Group which carried supplies

12 to Iraq.

13 As of this date, the VA has not recognized

14 my illnesses at all. Alhough I was treated while in

15 the Persian Gulf, they still have not recognized it.

16 I have not been able to work since June of

17 1994. My VA doctor stopped me from working. I was a

18 Deputy Sheriff here in Hillsborough County. I

19 couldn't perform my duties anymore.

20 My VA doctor here has stated -- and I have

21 a document -- that he believes my physical condition

22 is due to my service in the Persian Gulf, yet the VA

23 Board of Health says that is not enough. I did my

24 time. I served. Like a lot of the other vets, we

25 were there, we served our country, we were called to


1 duty, we did what we had to do, yet the VA does not

2 recognize it.

3 While over there in the oilwell fires and

4 the different exposures we would ask our company

5 commanders, "Do we need protective gear?" and we were

6 told, "No. There is nothing here. You don't need

7 it." We would see the patriot missile attacks, the

8 alarms would go off -- they would tell us, "You don't

9 need anything. The alarms are going off accidentally.

10 You don't need nothing."

11 We need help. The veterans need help.

12 Hopefully this Committee can get to the President and

13 with him get to the VA, get to the DOD and get to the

14 bottom of what's taken place and get help for the

15 veterans. Now, a lot of the veterans I've talked to

16 are on active duty. They are being compensated up to

17 30 percent, yet it seems like the Reservist, which I

18 was -- I was a Reserve called up, we are having to

19 fight tooth and toenail for what -- and still getting

20 nothing.

21 I'm not able to do a lot of the fight, but

22 thank God I've got a wife that does. She keeps that

23 phone line burning to Washington all the time trying

24 to get help, not only for me but for the other vets.

25 She's not in good health now. She's getting sick. I


1 have a six year old son. He is now suffering from

2 this same thing. We need help. How many generations

3 down the line are going to suffer from what has

4 happened to us? Will it go through our kids to our

5 grandkids? How far -- when will it end? We don't

6 know. We need answers.

7 I live on 15 medications a day. That's

8 the only thing I've got to keep me going. I've got

9 chronic lung disease, I've got liver disease, I've got

10 kidney problems, gastrointestinal problems,

11 fibromyalgia, I've got chronic sleep disorder -- I

12 could go on and on and on. I've got a bunch of

13 undiagnosed illnesses, yet the VA does not recognize

14 anything so far for me.


16 DR. KIDD TAYLOR: You mentioned that your

17 physician diagnosed -- reported that your illness is

18 related to your service in the Gulf?

19 WALLACE HEATH: As far as he knows. Yes,

20 ma'am.

21 DR. KIDD TAYLOR: Okay. So you're not

22 receiving any kind of compensation --

23 WALLACE HEATH: No, ma'am.

24 DR. KIDD TAYLOR: From the VA? You've

25 applied for compensation?


1 WALLACE HEATH: Not service connected.

2 They offered me non service connected. They said you

3 are 100 percent totally disabled, but we can't give

4 you a service connection disability --


6 WALLACE HEATH: Even though my VA doctor

7 stated he believes my physical condition is due to my

8 service in the Gulf, and on my papers they asked a

9 question that the doctor has got to fill out, "Is it

10 due to a chemical or environmental contaminant?" and

11 he marks yes right on my papers. Yet nobody else will

12 recognize it but him.


14 diagnosis that they say is not service connected?

15 WALLACE HEATH: They say none of mine is

16 service connected, yet I was treated in the Persian

17 Gulf.

18 CHAIRPERSON LASHOF: Okay. Thank you.

19 WALLACE HEATH: And I have medical records

20 to prove it because I keep a copy of my medical

21 records.

22 CHAIRPERSON LASHOF: Any more questions?

23 If not -- thank you very much. John Lawrence.

24 MRS. HEATH: Excuse me. Can I just say

25 something real quick? I'm his wife, and you asked


1 about compensation. He applied over two and a half

2 years ago. They have yet to give him a 2507 exam, yet

3 all of these doctors are VA doctors, the hospital in

4 Washington. So that's the main thing that I wanted to

5 say, because he's been waiting more than he should.

6 CHAIRPERSON LASHOF: Thank you very much.

7 John Lawrence.

8 JOHN LAWRENCE: Good morning. It's an

9 honor to be allowed to speak this morning. This is a

10 proud day in my life that the government is finally

11 making an effort. It's also one of the sadder days in

12 my life. I just signed my retirement papers a few

13 days ago to retire from the Reserves after 27 and a

14 half years. On the day I signed I was probably the

15 ranking enlisted person in the state of Florida.

16 I became a Sergeant Major in November of

17 1985. I never thought I would live to see hypocrisy

18 and lies that I have seen out of Washington since this

19 War. Yes, there are people suffering. I have some

20 friends that could not be here because of that. One,

21 Sergeant Jan Bargo (phonetic), has been in a

22 wheelchair for over two years. She had to fight with

23 the VA to get a wheelchair. The other day she

24 received a call from the Veterans Administration that

25 said that unless she paid the bills that they said she


1 owed them they were going to turn the bills over to

2 the IRS. She is 100 percent disabled and can't walk,

3 but the VA is hounding her even after she declared

4 bankruptcy.

5 Who, what, when, where and why? I thought

6 for several days about exactly how to approach this.

7 As Mr. Wallace Heath said, I served in Vietnam in 1969

8 and '70 as he did. I was proud to do my job there as

9 a very genuine enlisted person. When I came home from

10 Vietnam we were given up to one year to go to a

11 Veteran's hospital to get our teeth fixed. The Army,

12 at that time, displayed more concern for discharged

13 veterans.

14 I joined the Reserves. The day after

15 Thanksgiving in 1990 the phone rang at my house. The

16 next Monday morning I was at the Reserve Center. We

17 got the alert notice officially on Tuesday afternoon.

18 On Saturday morning I had my troops at Fort Stewart,

19 Georgia, the 442nd Personnel Service Company. It

20 consisted of people that strung from Panama City to

21 Jacksonville to Miami and down to St. Pete. Most of

22 them came from Orlando, Florida where my home is.

23 The 442nd Personnel Service Company was

24 the only personnel service company that went up to the

25 border. As soon as we landed, three days before the


1 air war, we moved out to the First Calv Corral 30

2 miles west of Dhahran. We went in to the now famous

3 Khubar Towers, regrouped, and it was at that point

4 that I had the distinct privilege to see the first

5 SCUD fired at Saudi Arabia explode 1,000 feet above

6 Kuhbar Towers. At that time the news media said that

7 Saddam Hussein was firing at the air field. The

8 guards at the air field told me the next morning that

9 it was already past the air field when it exploded.

10 He knew that we were grouping soldiers at Khubar

11 Towers. As soon as we got our equipment together we

12 moved up to the now famous KKMC. At that time it was

13 a well-kept secret, even though it was built by the

14 Army Corps of Engineers at a cost of about 6 billion

15 dollars.

16 We lived in the mud and the tents about

17 two miles away from King Khaled Military City. I know

18 of your companies, Log Base Charlie, Rafha as I got

19 out and visited the units. I went up into Iraq before

20 the ground war started trying to make sure that we

21 knew where people were. I suspect that one of the

22 reasons that they have drug their feet is that the

23 United States government had no idea who was in Saudi

24 Arabia. They didn't even know what units were there,

25 much less people.


1 My wife was running a family support

2 organization back on Coreen Drive in Orlando when the

3 phone rang one day. They were trying to get in touch

4 with the 442nd Personnel Service Company. She said,

5 "I hope you've got money for a long distance call."

6 They said, "What do you mean?" She said, "They're in

7 Saudi Arabia." The answer was, "What do you mean,

8 they're in Saudi Arabia?"

9 At another location in Orlando they asked

10 for the 674 Transportation Company. It had already

11 been deactivated. Working in personnel I knew that my

12 soldiers were going to stay there until everybody was

13 accounted for. That was what our job was, to try to

14 catch their names as they left the country. I talked

15 to the people from DOD about this. They said the same

16 thing happened in Grenada and in Panama. They didn't

17 know who they had on the ground.

18 We took the shots at Fort Stewart. We

19 took the vaccinations. In Saudi Arabia we were even

20 asked at one point to sign a statement that we weren't

21 going to talk about that because it was a secret. I

22 took my nerve pills, as did the other soldiers of the

23 442nd on the night that the ground war started.

24 I left the country weighing 196 pounds.

25 Late April of '91 when I had to spread out and take


1 over the Personnel Services for the entire country, I

2 stepped on a scale and I weighed 145 pounds. From

3 January to April I had lost 51 pounds. It was at that

4 point that some people said, "I think you should see

5 a doctor. I think there is something wrong." I said,

6 "No." I figured it was because of the garbage we were

7 given to eat. The very first meal that I had in Saudi

8 Arabia was prepared by a third country national under

9 contract. We did have a National Guard mess haul up

10 at KKMC for a very brief time. They were moved out

11 and we continued then to be given food by third

12 country nationals. I can not say if that food was

13 ever inspected by a veterinarian. That's what their

14 job was supposed to be.

15 We took showers from water that was open,

16 exposed to the oil smoke. When we took the showers of

17 course -- if you can imagine taking a shower of talcum

18 powder and dumping it over your head, that's what we

19 looked like when we got back to where we were supposed

20 to work. It was a fine yellow dust that covered

21 everything.

22 My folks did their job. I was proud of

23 them -- 89.6 percent of the people that we rounded up

24 here in Orlando made it to Saudi Arabia. That, if you

25 will compare it to some active duty units, is an


1 unbelievable percentage. The 24th Infantry Division

2 got out of Fort Stewart with 70 percent of their

3 people. The two active duty personnel service

4 companies that had gotten to Saudi Arabia before us

5 deployed at 50 percent strength. The majority of the

6 10.4 percent of my soldiers who did not get to go to

7 Saudi Arabia remained on active duty in Fort Stewart

8 until we came back in August of that year.

9 By the time we left, my soldiers were

10 taking care of all of the casualty reports for Saudi

11 Arabia, all of the promotions, all of the awards, all

12 of the incoming flights and all the departing flights.

13 There were 2,000 people left in the country that were

14 there when we got there when we left, and those 2,000

15 people were volunteers that wanted to stay longer

16 because of the financial benefits accruing to them.

17 We were the last unit to come home through Fort

18 Stewart. We had a cursory physical examination. I

19 think I was at the table with the doctor for five

20 minutes, and at that time I mentioned to him that I

21 had rashes or breaking points in my skin that I

22 thought should be looked at. He looked at my hands

23 and said, "Oh, that's just keratosis. They'll take

24 care of it later. It's nothing."

25 I got back to Orlando and I filed the


1 paperwork to have my teeth looked at because one had

2 broken while I was out in the desert. I pulled the

3 piece that was broken out myself because we did not

4 have the type of dental care that I had seen in

5 Vietnam. I found out at that point that the 214 that

6 the Army issued erroneously said that we had all

7 received dental treatment before we were discharged.

8 I realize -- I'm going to wrap it up here pretty

9 quick.

10 The point is you've heard the other people

11 talk about these conditions. I have them. My

12 soldiers have them. In fact, to illustrate what Mr.

13 Heath said about his medications, I used to take one

14 multi-vitamin a day. Now this is my daily requirement

15 (indicating). The multi-vitamin is the one loose one

16 at the bottom. I filed a claim with the VA. They

17 said there is no service connection. In fact, to show

18 the support that I'm getting from the Veterans

19 Administration, when I got home yesterday I had

20 another bill from the VA, even though the people in

21 Orlando had said, "No, you are not supposed to be

22 paying for treatment. But we can't do anything about

23 the billing procedure. When you get the bill, you

24 call us and we will fix it." I said, "That seems like

25 an expensive way to do business. Why can't you


1 instruct them to -- since Connie Mack got a bill

2 passed that says Persian Gulf Veterans will be treated

3 and you do treat them, why are you billing them?"

4 As I said, it's a happy day in my life.

5 I'm glad that you're here. I'm glad that some of the

6 soldiers and airmen and Marines are having the

7 opportunity to hear their voice. Also it is the

8 saddest day of my life that it had to come to this.

9 CHAIRPERSON LASHOF: Thank you very much.

10 JOHN LAWRENCE: Thank you. I'm afraid we

11 don't have time for questions.

12 DR. KNOX: I'd just like to say something,

13 Joyce. The Committee has not asked many questions or

14 made many comments today, and I know many of the

15 veterans have travelled from far distances to come

16 here to Tampa, Florida. Please realize that, you

17 know, this is about the 12th or 13th city that we've

18 been in and unfortunately we hear the very same story

19 in every city. We are very sympathetic to your cause.

20 We know that you're experiencing illnesses and we're

21 working diligently to do something about it. Ms.

22 Migdall talked about Anthrax. We've not heard about

23 a biological agent in quite some time, but I see that

24 DOD has issued an order that all of the troops, active

25 duty and Reserve and guard, will receive an Anthrax


1 vaccine in the future. So we do hear what you are

2 saying and we are listening, whether we have made

3 comments or not.

4 JOHN LAWRENCE: Thank you very much.


6 Marguerite. We have one more person to hear from,

7 William Carpenter.

8 WILLIAM CARPENTER: Thank you, sir. Good

9 morning, members of the Presidential Advisory

10 Committee panel and members of the public. My name is

11 William Carpenter. I'm a Vietnam veteran. I served

12 nine months in the Persian Gulf in the 325th

13 Maintenance Combat Support Unit, a Florida Army

14 National Guard Company.

15 I have chemically induced asthma,

16 experience allergic reaction to various substances

17 from cigarette smoke to household cleaners. I have

18 shortness of breath, muscle aches and cramps,

19 reappearing sores, cognitive disfunction, numbness in

20 my face and hands, and extreme fatigue. Fourteen

21 months after returning from the Gulf I was forced to

22 take a medical disability from a job of 11 years and

23 I'm not able to do the physical labor nor the mental

24 work I did before my Gulf War service.

25 I have been dealing with Infections


1 Administration, VA hospitals and doctors and VA

2 adjudication process for five years. One problem I'd

3 like to address concerns the confusion arising from

4 miscommunication about the Persian Gulf Registry and

5 the comp and pension physicals. Some veterans who

6 applied for comp and pension were assured that --

7 excuse me -- assured they would be added automatically

8 to the Persian Gulf Registry. This was not the case.

9 So many veterans that believe they are on the Registry

10 are not and some veterans, thinking they were getting

11 a comp and pension physical, were actually

12 participating in a registry physical and so have not

13 received a disability rating.

14 Many active duty personnel are ill, yet

15 are afraid to place themselves on the Registry because

16 of concerns for their military careers. Other

17 veterans have not registered because they feel they

18 are not ill at this time. We need a presidential

19 mandate to require registration of all Gulf War

20 veterans. This mandate would remove any professional

21 or social stigma attached to being registered so that

22 those who have been reluctant can be added to the

23 list, and this will enable researchers to gather data

24 from both the veterans who are ill and the ones who do

25 not believe they are sick at this time.


1 According to a Persian Gulf Hotline

2 spokesperson, Registry names are listed

3 alphabetically. Due to misspelling, spelling

4 similarities and duplication, this seems

5 counterproductive to being able to provide information

6 quickly and easily to those veterans who make

7 inquiries as to whether or not they're on the

8 Registry. Since all military personnel are identified

9 by their social security numbers, it would be more

10 sensible to arrange a Registry data base the same way.

11 VA physicals are not comprehensive enough

12 to diagnose Gulf War illness. Almost daily, veterans

13 tell me the extent of their Registry exam was a chest

14 X-ray, simple blood and urine test. In the same vein,

15 the comprehensive clinical evaluation physical, CCEP,

16 mandated by the DOD to uncover undiagnosed illness of

17 Gulf War veterans, is no more comprehensive than the

18 VA physical. Further, the VA physicals offered to

19 children and spouses are a waste of time and taxpayer

20 dollars because the medical tests given are the same

21 tests that the veterans have had for the last five

22 years, none of which have resulted in substantiation

23 of illness, much less the cause of it. Yet civilian

24 doctors, using comprehensive testing and technology,

25 are finding viruses and physical problems that are not


1 showing up in the VA tests.

2 Much time and money could be saved if the

3 DOD would voluntarily disclose information concerning

4 chemical and biological agents and -- excuse me again

5 -- the biological agents and depleted uranium

6 contamination of the soldiers. Research could then

7 focus on treatment rather than wasting precious

8 financial resources searching for a cause. This

9 disclosure would perhaps encourage VA doctors to take

10 the claims of illness more seriously and treat those

11 soldiers with respect rather than scorn.

12 Another problem is the adjudication

13 process. Comp and pension doctors do not know or

14 understand the criteria the adjudication officer

15 needs, to make a fair decision. It would be prudent

16 for the adjudication officer to be present in the VA

17 hospital. The doctor could then discuss the comp and

18 comp pension case with the officer while doing the

19 physical so the correct information could be obtained.

20 I am rated by the VA as 60 percent service

21 connected for chemically induced asthma, 10 percent

22 for cognitive disfunction and 10 percent for a variety

23 of undiagnosed symptoms and 100 percent

24 unemployability. The VA constantly denied a rating

25 until its civilian preliminary doctor administered a


1 methaqualone challenge and proved major lung damage.

2 My own CCEP physical consisted of basic blood and

3 urine tests, my military and VA medical records.

4 The last time I went to the VA hospital I

5 needed medication to help my breathing, and I also

6 hoped there might be something that could reveal the

7 terrible pain in my joints and leg muscles. At the

8 hospital I was assigned to a medical team for Desert

9 Storm veterans and was seen by a physician's

10 assistant. I explained that my leg muscles got rock

11 hard and that they hurt so badly I cry out in pain and

12 tears come to my eyes. He took the routine blood and

13 urine samples and told me to come back the next week.

14 The next week I told him the pains were still frequent

15 and hard, and he explained all the tests were normal

16 and added that we all have cramps at times and I

17 should expect to have some also.

18 Though I had explained that I lived 92

19 miles from the hospital he said he would write me a

20 prescription for twice a week pool therapy so I could

21 use the hospital pool. He did not see the problem

22 with my driving 368 miles each week for his prescribed

23 therapy. He also wrote a consult with a nutritionist

24 for the next week so I could have a 15 minute talk

25 with her about my nutritional needs and how to eat


1 correctly. When I explained again about the 92 miles

2 each way he said I could do what I wanted but the VA

3 was not going to do anything else for me. I have not

4 visited the VA hospital since.

5 In recent weeks the CIA disclosures have

6 validated testimony of thousands of soldiers who have

7 claimed for five years they were a victim of nerve gas

8 agents. As time passes there are going to be more

9 disclosures which will shed light on Gulf War illness.

10 The VA should reevaluate the education information

11 process used to inform their doctors and hospitals

12 concerning Gulf War Syndrome and should stress to them

13 that these soldiers deserve proper and adequate

14 medical treatment, and if there is no treatment they

15 can offer, the veteran still deserves respect as a

16 human being and as a soldier who served his or her

17 country loyally and obediently. Thank you.

18 CHAIRPERSON LASHOF: Thank you. Andrea,

19 you had a question?

20 DR. KIDD TAYLOR: I have a question.

21 Where were you stationed in the Gulf?

22 WILLIAM CARPENTER: I was in Dhahran,

23 Jubayl and up in the desert on the Kuwait border.

24 CHAIRPERSON LASHOF: Are there any further

25 questions? No? Thank you very much. Let me


1 reiterate what Marguerite Knox had to say. We have

2 been listening to stories around the country and we

3 have taken in additional testimony from those who

4 could not testify. All of it has been reviewed not

5 only by the Committee and the staff, and all of it

6 will be taken into consideration as we prepare a final

7 report.

8 Unfortunately this morning we can not take

9 additional testimony. We do have a waiting list of

10 about eight people who also wish to testify, but our

11 schedule is extremely tight. We do have written

12 testimony from a few of the people who asked to

13 testify and we will submit that to the Committee. If

14 any of the other people who could not testify would

15 like to submit additional written material either

16 today or any time over the next few weeks, we are open

17 to accept that testimony and will give it serious

18 consideration.

19 I thank all of you for your willingness to

20 come before us today. We are going to take a brief

21 break now and then we will resume our deliberations of

22 the Committee as we review the findings of our work

23 over the last several months. Thank you very much.

24 We're running a little behind, but let's take a short

25 break and resume at 11:15.


1 (Whereupon a short recess was held.)

2 CHAIRPERSON LASHOF: Our schedule this

3 afternoon is to proceed through a series of staff

4 memos, review the findings and recommendations that

5 staff is suggesting for the Committee, and to discuss

6 each of those. Could I ask the audience to quiet down

7 so that we on the Committee can hear our staff

8 reports, please? We're starting with one on Risk

9 Communication -- no? Oh, okay. I'm sorry. There is

10 a change in order. We're going to start with the

11 Implementation of the interim report recommendations,

12 which is at tab C then. Okay. We're going to begin

13 with tab C rather than tab B, the Implementation and

14 the interim report recommendations. Is Michael or

15 Holly kicking off? Michael?

16 MR. KOWALOK: The Committee's interim

17 report included four staffers addressing specific

18 elements of the Committee's charters. These elements

19 were outreach, medical and clinical issues, research

20 and chemical and biological weapons. For each of

21 these the Committee provided observations of findings

22 and recommendations, including the government's

23 response to several issues encompassing Gulf War

24 veterans --

25 (Whereupon the mike was turned on.)


1 My report is a status of how well the

2 Department of Defense, Veterans Affairs and Health and

3 Human Services have responded to the Committee's

4 recommendations in this interim report. Based on this

5 review, staff suggests new findings and recommendation

6 in areas where a different response or a different or

7 new response appears appropriate or necessary. I will

8 provide these new suggestions at the conclusion of my

9 remarks.

10 I'd like to have the first slide. Those

11 are the recommendations that the Committee made in its

12 interim report. Those recommendations focused on

13 including clarify and utility of DOD and VA techniques

14 for educating veterans and the public about Gulf War

15 veterans' illnesses and about the health care and

16 benefits available to veterans. Committee staff find

17 that DOD and VA have been responsive to these

18 recommendations and are implementing the Committee's

19 suggestions. I would want to add that reflective of

20 some of the prompts that were given in this morning's

21 public testimony, the Committee heard at its September

22 meeting a recommendation presented for its

23 consideration regarding better continuing medical

24 education for medical personnel in the VA and DOD

25 treatment facilities. You will be seeing more about


1 that as drafts of the final report begin to be

2 developed.

3 Also later in today's meeting there will

4 be discussion about risk communication, and within

5 that context will be further discussion about outreach

6 to veterans and how to coordinate that effort with

7 veteran service organizations and other

8 intermediaries.

9 May I have the next slide, please? These

10 are the recommendations that the Committee made about

11 medical and clinical issues associated with one, the

12 deployment and demobilization of troops. Two,

13 policies governing the Military use of investigation

14 in drugs and vaccines for defense against chemical and

15 biological warfare agents. And three, the

16 government's performance on record-keeping during and

17 after military engagements.

18 First, regarding deployment and

19 demobilization, Committee staff find that DOD has been

20 responsive to the recommendations about the medical

21 treatment policies that govern the pre, during and

22 post deployment of US troops. DOD has not been

23 responsive, however, to the Committee's recommendation

24 that prior to any deployment DOD should undertake a

25 thorough health assessment of a large sample of troops


1 to enable better notification, better post deployment

2 medical epidemiology, and better and more timely post

3 deployment follow-up.

4 One of the overriding difficulties of

5 research in Gulf War veterans' illnesses is the

6 absence of baseline data on health and environmental

7 hazards. The Committee heard testimony in September

8 1996 about major improvements DOD has implemented in

9 its medical surveillance and environmental monitoring

10 programs. DOD has introduced these techniques in the

11 Bosnian peace-keeping mission but they have not been

12 tested in a large-scale conflict and medical

13 surveillance might be perceived by some personnel as

14 a low priority in a war fighting environment.

15 Second, regarding the investigational

16 drugs and vaccines, in the interim report the

17 Committee discussed the Food and Drug Administration's

18 policies that govern the military use of

19 investigational drugs and vaccines for CBW defense.

20 Specifically, the Committee commented on the FDA's

21 interim final rule that permits a waiver of informed

22 consent for use of unapproved products during military

23 exigencies. It recommended that if the FDA decides to

24 reissue the interim final rule as final, it should

25 first issue a notice of proposed rule-making.


1 Testimony at the Committee's September

2 meeting showed that FDA is now considering the interim

3 role in conjunction with guidelines for CBW profile

4 access approval and is also considering how to address

5 military and civilian use. However, Committee staff

6 remained concerned about the amount of time FDA is

7 taking to move forward on finalizing the interim rule,

8 which was issued more than five years ago.

9 Also regarding the interim final rule, the

10 Committee recommended that given that it is still in

11 effect, DOD should develop enhanced orientation and

12 training procedures so as to alert service personnel

13 that if a conflict presents a serious threat of

14 exposure to chemical or biological warfare, troops

15 could be required to take investigational drugs or

16 vaccines not fully approved by the FDA. Staff find

17 that DOD has made no specific response to the

18 Committee's recommendation that these procedures be

19 enhanced.

20 Third, and finally regarding record-

21 keeping, Committee staff observed that although DOD

22 has made progress in working toward improving medical

23 record-keeping in theater and state-side, increased

24 committee from DOD's joint chiefs of staff and the

25 commanders in chief are essential for increasing the


1 priority of this effort. This attention and

2 commitment are necessary in view of the many and

3 sometimes redundant data collection systems in place,

4 incompatibilities in hardware and software, rapidly

5 changing technologies and bureaucratic turf balance.

6 May I have the next overhead, please? Let

7 me move to the recommendations that the Committee made

8 about the portfolio of research being sponsored by

9 DOD, VA and HHS. Committee staff find that the

10 agencies have been responsive to these recommendations

11 but provide comments on one, the use of public

12 advisory panels for epidemiological studies and two,

13 the utility of the Persian Gulf Registry of unit

14 locations.

15 Regarding public advisory panels,

16 Committee staff find that while both VA and DOD have

17 encouraged their principle investigators to convene

18 and consult scientific advisory committees, they have

19 not taken serious steps to encourage the formation and

20 use of public advisory committees. For example,

21 although public advisory committees will be

22 recommended for the three epidemiological studies

23 recently funded through the 1995 broad agency

24 announcement, the use of such committees was given low

25 priority by contracts and grants administrators.


1 Staff suggest that this is unfortunate because public

2 advisory committees would greatly facilitate the

3 incorporation of veterans' concerns into study design

4 and into the dissemination of results.

5 Regarding DOD's geographic unit locator,

6 Committee staff find that although DOD's

7 congressionally mandated Persian Gulf Registry of unit

8 locations is available to government and private

9 researchers, the data base itself lacks the precision

10 and detail necessary to be an effective tool in the

11 investigation of exposure episodes. More to the

12 point, the unit locator data base has failed in its

13 application to the single incident involving chemical

14 warfare agents that DOD has investigated in any detail

15 to date. That is Bunker 73 and the pit at Kamisiyah.

16 In assessing the personnel placement for

17 the Kamisiyah detonations, DOD's Persian Gulf

18 Investigation Team did not rely on the reports

19 provided from the data base because the assumption on

20 which the data base is premised that individuals

21 remain with their units is the exception rather than

22 the rule. As Committee staff noted at the September

23 meeting, relying on this unit locator data base would

24 have placed the entire 37th Engineering Battalion

25 directly on top of Bunker 73. Instead, the Persian


1 Gulf Investigation Team went back to the operational

2 records and engaged in a series of interviews to try

3 to piece together an accurate measure of troop

4 locations. These measures were based on the field

5 duties assigned to district groups that might or might

6 not be represented by one of the data base's unit

7 identification codes.

8 For these reasons, Committee staff

9 conclude that the unit locator has not been a valuable

10 tool for the investigation of exposure scenarios. The

11 effort is no more successful than the similar effort

12 following the Vietnam War to examine possible

13 exposures to Agent Orange. Regrettably, there were

14 raised expectations about the potential utility of the

15 data base and it had been held out by many as

16 potentially offering more information than it has

17 demonstrated to date.

18 May I have the next slide, please? Let me

19 move now to the recommendations that the Committee

20 made about one, the DOD and CIA review of possible

21 exposures to chemical warfare agents during the Gulf

22 War, two, the level of effort that DOD is devoting to

23 monitoring for low level exposures to CW agents, and

24 three, the level of effort that DOD is investing in

25 developing detectors for biological warfare agents.


1 First, Committee staff find that while CIA

2 analysts have vigorously reviewed both classified and

3 open source information related to CBW exposures

4 during the Gulf War, DOD has failed to take advantage

5 of its unique access to both classified and routine

6 military records to investigate and help answer the

7 public's questions about possible CBW exposures.

8 Second, Committee staff find that DOD has

9 resisted the recommendation that DOD devote more

10 attention to monitoring for low level exposure to

11 chemical warfare agents.

12 And third, DOD has not made substantial

13 progress in fielding a real time detector for

14 biological agents.

15 Finally, Committee staff note that in a

16 series of studies since the end of the Gulf War in

17 1991 the U.S. general accounting office has identified

18 several inadequacies in the U.S. military's

19 preparedness for chemical or biological attacks. GAO

20 briefed the Committee on these matters at the May

21 meeting. While DOD had agreed with virtually all of

22 GAO's findings and recommendations, Committee staff

23 are concerned that the equipment, training and medical

24 shortcomings that GAO identified, these shortcomings

25 may still persist and are likely to result in needless


1 casualties and a degradation of U.S. war-fighting

2 capability. Thank you.

3 Let me now move to staff conclusions. In

4 its interim report, the Presidential Advisory

5 Committee made 22 recommendations for improving the

6 government's response to the several issues

7 encompassed in Gulf War veterans' illnesses. Based on

8 the review I just presented, staff find that the

9 departments have been responsive to 19 of the 22

10 recommendations provided in the interim report. Let

11 me provide staff new suggested findings and

12 recommendations that were formulated to reemphasize

13 the issues where agency responses have been weak.

14 Staff suggest one new finding and one new

15 recommendation regarding the deployment and

16 demobilization of troops. The finding is that DOD has

17 not been responsive to the Committee's recommendation

18 that prior to any deployment DOD should undertake a

19 thorough health assessment of a large sample of troops

20 to enable better post-deployment medical epidemiology

21 along with timely post-deployment follow-up. The

22 recommendation is that the clinical and research

23 working groups of the Persian Gulf Veterans

24 Coordinating Board should be charged to develop a

25 protocol to implement this recommendation.


1 Staff suggests two findings for issues

2 regarding investigational drugs and vaccines. The

3 first finding is that FDA is moving forward toward

4 finalizing the interim final rule that permits the

5 waiver of obtaining informed consent for the use of

6 unimproved products during military exigencies.

7 However, the Committee remains seriously concerned

8 about the amount of time currently exceeding five

9 years that FDA is taking to move forward with this

10 process.

11 The second finding is that DOD has made no

12 specific response to the Committee's recommendation

13 that DOD should develop enhanced orientation and

14 training procedures regarding the investigational

15 drugs or vaccines that are used for defense against

16 chemical and biological warfare agents.

17 DOD's lack of response in this highly

18 sensitive area contributes to the perception of many

19 that US troops were inappropriately subjected to

20 investigational drugs or vaccines during the Gulf War.

21 Staff suggests one new finding regarding

22 record-keeping. This finding is that DOD has made

23 progress in improving medical record-keeping in

24 theater and state-side, but increased and sustained

25 commitment from DOD's joint chiefs of staff and


1 commanders in chief will be necessary for current

2 prototypes and plans to be fully and successfully

3 implemented and integrated.

4 Staff suggests two new findings and two

5 new recommendations regarding the research portfolio

6 on Gulf War veterans' illnesses. The first finding is

7 that DOD and VA have not taken serious steps to

8 encourage their principle investigators to convene and

9 use public advisory committees for its Gulf War

10 veterans' epidemiologic health research. The

11 recommendation for this finding is that the research

12 working group of the coordinating board should require

13 that any proposals for new large-scale Gulf War

14 veterans' epidemiological health research describe a

15 plan to incorporate a public advisory committee into

16 the study design, dissemination of results, or both.

17 The research working group should consider

18 justifying a waiver of such a committee only under

19 rare circumstances.

20 The second claim is that unit locations

21 lack the precision and detail necessary to be an

22 effective tool for the investigation of exposure

23 episodes. This effort has been no more successful

24 than the effort to compile similar information

25 following the Vietnam war to examine possible


1 exposures to Agent Orange. The recommendation for

2 this finding is that DOD should develop more accurate

3 methods for recording troop locations so as to

4 facilitate the health research that will be performed

5 following future conflicts. That concludes my

6 remarks.

7 CHAIRPERSON LASHOF: Thank you very much,

8 Mike. What I'd like to do is have the Committee first

9 review the background material that Mike has presented

10 and raise any questions that they would like to on

11 that part of the memo, and then we'll move to take up

12 each of the findings and the recommendations

13 separately. But first, does anyone have any

14 questions? Yes, Rolando.

15 MR. RIOS: Michael, I have starting off a

16 general question. When we started on this venture,

17 the government's position was that there had been no

18 exposures to chemical agents from our troops. Given

19 the recent disclosures by CIA and DOD has that caused

20 some changes insofar as your -- are you in the process

21 of reevaluating all of these recommendations on

22 outreach, medical and clinical issues, and so on and

23 so forth? In other words, are we going to have some

24 follow-up now because of the new developments and new

25 facts that are before us?


1 CHAIRPERSON LASHOF: Holly, maybe you want

2 to comment on that. Also, I would point out Rolando,

3 that at this point what we're looking at is what were

4 the recommendations. In the interim report a number

5 of those issues will be addressed as we update the

6 staff memo. Holly?

7 MS. GWIN: Well, you remember that at our

8 September meeting and again in Mike's presentation

9 just now, we found that DOD had not been responsive to

10 our recommendation that they do undertake a thorough

11 review of all the records of the Gulf War to discover

12 whether there was any chemical agent exposure. So we

13 are in the process of looking at that issue.

14 Tom McDaniels will be making a

15 presentation later this morning on Risk Communication,

16 which very much does take into consideration the fact

17 that failure to disclose some of these types of

18 incidents has made it harder to communicate with the

19 veterans about what their actual health risks are.

20 CHAIRPERSON LASHOF: But I mean now that

21 we have the disclosures, the new developments, I

22 assume we're going to be reacting to what they've just

23 told us over the past month or so.

24 MS. GWIN: Yes. In fact, we have made

25 several recommendations that were discussed at the


1 last meeting about how to more effectively continue

2 with those investigations now and what ought to be

3 done in terms of notifying veterans about their

4 possible exposure, which is a type of outreach effort.

5 We are discussing in our research portfolio

6 presentation this afternoon some ideas we have for

7 additional research on the effects of low level

8 chemical exposure.

9 DR. TURNER: If I could comment briefly,

10 Mr. Rios. As I noted in September, this is an

11 evolving situation. The number of facts that we have

12 are still being developed, and the exposure areas that

13 we noted in September, at that time staff noted that

14 was subject to change with developing information.

15 We're still working to try to get the best information

16 -- the best factual information that we can, with the

17 Agency and the Department of Defense, to be able to

18 refine those recommendations with respect to

19 exposures.

20 MR. RIOS: It just seems to me that given

21 the new facts that it kind of throws everything into

22 a different --

23 MS. NISHIMI: If I can make just another

24 run at this, Rolando. The staff has been refining the

25 findings and recommendations, including those that are


1 incorporated in this memo. This particular area

2 though is sort of backwards and then forwards. We're

3 looking just in this memo at what we said in the

4 interim report and then how the government responded.

5 The government's response with the Kamisiyah

6 revelations has been discussed in the previous memos

7 and will continue to be revised up until the final

8 report, but this particular area really is confined

9 just to the interim reports recommendations.

10 CHAIRPERSON LASHOF: We will come back to

11 it. It will not be ignored.

12 DR. CAPLAN: I just had two questions so

13 I understand where we are with respect to what we

14 talked about in the interim report. One is to Michael

15 on the unit locator issue. I think a lot of chips

16 have been put down on the notion that in order to

17 figure out who is exposed to what,m where and do some

18 epidemiology, the unit locator information was going

19 to prove crucial. As you have reviewed what's there,

20 both looking at retrospectively an analysis of what's

21 available for where units were and where people in

22 those units were at different times and comparing it

23 to the Agent Orange Vietnam situation, has your views

24 changed since the interim report about the feasibility

25 of ever getting this information? Is this beyond the


1 scope of anybody to keep track of in the midst of a

2 conflict? Can we do correlations that are meaningful

3 in any way? What is your real feeling about that,

4 having looked at this relatively brief conflict and

5 trying to keep track of who is where?

6 MR. KOWALOK: I was disappointed to learn

7 that the unit locator was not used for the PTIT

8 investigation at Kamisiyah. I can not comment myself

9 on how likely it would be useable for other studies.

10 Perhaps --

11 DR. TURNER: But to give you a feel for

12 the level on it, right now it's 100 percent for

13 brigade sized units, which is 5,000. There are other

14 technologies out there. We have not taken an in-depth

15 look at whether they could be useable.

16 DR. JOELLENBECK: I think that as they

17 have done this work, and this was done in response to

18 a congressional mandate, they have been surprised at

19 the magnitude of the job before them as they have now

20 begun to use it to look at Kamisiyah. But now that

21 they are beginning to work with epidemiology studies

22 who are interested in potentially using it as part of

23 their exposure input, they are finding that it

24 contains big gaps. They are interested in being able

25 to identify where the units were on each day, and they


1 are finding that there are tremendous holes in the

2 information that they were able to get out of the

3 theater. So there is holes in the information and

4 then where they have information there are errors at

5 times in that information itself. For example, that

6 led to the thinking that that unit was on the Bunker.

7 So I think that there has been an increasing

8 realization that it's not going to meet the very --

9 the hopes that were raised.

10 DR. TURNER: Part of the reason I'm

11 interested in this too is we've -- as the Committee

12 has pushed and prodded about this issue of the dump

13 and so on, we've watched different projections about

14 who might have been exposed, where they might have

15 been, and obviously some of this mingling is very

16 strongly dependent on this technique of the unit

17 locators and who is within these units. Part of my

18 concern is that we in a sense acknowledge that we

19 don't know, what never could be known if there really

20 are limits here to what's possible to do. Let me just

21 go on to the investigational drug issue. I'm curious

22 about the staff discussion on this one. We've been

23 sort of pointing fingers toward the FDA and saying,

24 "Look, if you're going to finalize the rule here it

25 ought to be done with the ability to have a lot of


1 public input, public discussion."

2 The FDA just put out a rule which allowed

3 for research in emergency situations on people who

4 suddenly become very ill and can't consent for

5 research to be done on things like cardiopulmonary

6 resuscitation or new medical devices that might let

7 somebody in an emergency room have an improved

8 technique. I noted when they issued that rule that

9 they added two provisions. One was that there should

10 be community consultation if you're going to do

11 research in an area where you can't get consent from

12 the subjects in that the IRB system will have extra

13 responsibility to supervise this kind of research,

14 these human experimentation committees.

15 This was of keen interest to me because it

16 seems to be there is a signal about what FDA might do

17 in the military setting. One might talk about

18 community consultation, having a civilian or some

19 other board constituted to have discussions with

20 troops that experimental things might be tried in

21 certain situations, and there may be a committee that

22 is supposed to oversight and follow-up, but I don't

23 understand and I'd just like a few more words. What

24 is holding up the process here of having more

25 discussion and testimony input in situations of


1 research in the military setting? I mean I've read

2 what's here and I've read it in the interim report and

3 we did our hearing to talk about it. What's the

4 feedback from the FDA? They've got this other rule

5 out. Where are they on this one?

6 MS. PORTER: I'd like to comment on this

7 one to say that I believe FDA has not been terribly

8 forthcoming with us about the specifics of their

9 internal discussions or their discussions with DOD or

10 other parties on precisely how they are moving ahead

11 with this. We had testimony at our last committee

12 meeting from the Department of Health and Human

13 Services that some of the considerations about the

14 interim final rule had become entangled in discussions

15 about civilian protections and how there might be

16 considerations of waivers for civilian populations as

17 well.

18 And also the issue of the interim final

19 rule has become enmeshed in discussions about use of

20 surrogate markers or end points for approval of

21 chemical and biological prophylactic agents. So the

22 scope of their deliberations has widened to some

23 degree, but nevertheless the staff's suggested

24 emphasis is that they need to be more forthcoming and

25 they need to move ahead more rapidly because this


1 interim final has been in that status for over five

2 years.

3 CHAIRPERSON LASHOF: I should point out

4 that at the last meeting when Assistant Secretary

5 Phillip Lee testified we pushed him on this and we did

6 not get an answer from him, but I was hopeful that by

7 the time we finished pushing him that he would have

8 gone back to FDA and asked a few questions. Is there

9 any sign of more activity since September from FDA?

10 MS. PORTER: We keep inquiring and we will

11 continue to do so.

12 MS. NISHIMI: But the answer is no.

13 CHAIRPERSON LASHOF: All right. Other

14 questions?

15 DR. KNOX: I just have a question about

16 talking about the unit locations and where people

17 were. Would it be feasible -- one of the veterans had

18 mentioned this morning that we needed to include

19 veteran organizations in that effort of DOD and VA for

20 their outreach. Would it be feasible to include them

21 in some of the outreach to find where units were

22 located? Would that be something that we might want

23 to look at for a recommendation?

24 MS. GWIN: We have not considered the idea

25 of actually using a veteran service organization to


1 help with that. What we are finding with the

2 Kamisiyah investigation is that it is actual

3 discussions with veterans who are noted in the logs or

4 wherever as being assigned to that unit that are

5 providing the best information about who was where and

6 how many people were with them and stuff like that, so

7 there is definitely a role for actual -- actually

8 talking with people rather than just trying to rely on

9 paper logs.

10 DR. KNOX: Is that coming through the

11 PGIT?

12 MS. GWIN: The discussions?

13 DR. KNOX: Uh-huh.

14 MS. GWIN: Yes.

15 CHAIRPERSON LASHOF: Further on that

16 question, if the unit locator itself doesn't help us

17 find out who is where, does it at least help us find

18 out who we should ask who is there? I mean is there

19 value to continue to try to use the unit locator at

20 all or should it be abandoned as an effort?

21 MS. GWIN: I think the implication of what

22 we're suggesting here today is that it doesn't -- the

23 unit locator data base has very little utility because

24 it's based on a written record that for many reasons

25 is incomplete by the time they get around to trying to


1 build the data base. They are, as they go back now

2 and review records that were for one reason or another

3 not able to be recorded as part of the data base,

4 finding out a lot more information. There is much

5 more detail available to the investigators than the

6 data base is able to spit out, but the data base

7 itself is really no more useful, our impression from

8 talking to some staff, at least, than the Order of

9 Battle Chart Map that you can go to for a particular

10 day and start making your phone calls based on that.


12 questions about the general background material

13 presented in this document? If not, let us move to

14 the specific findings and recommendations. That is

15 over on page four of your memo under tab C. It first

16 has to do with a finding on deployment and

17 demobilization, and the recommendation has to do with

18 the coordinating board being charged to develop a

19 protocol to implement. Are there any questions about

20 that? Is that an acceptable finding and

21 recommendation? Hearing none, I'm going to accept it

22 if no one has a question or comment that we accept the

23 finding and recommendation. Marguerite?

24 DR. KNOX: I think that you might want to

25 define what health assessment is. I mean we did have


1 screening prior to going to Desert Storm and they will

2 tell you that it was health assessment. There were

3 not any diagnostics done with that. So you might want

4 to clarify what exactly you want there.

5 MS. GWIN: We were a little bit reluctant

6 to be too specific. What we hoped the research

7 working group and the clinical working group would do

8 actually is sit down and decide, based on years of

9 experience with the aftermath with conflict, what

10 information -- what type of health information going

11 in and coming out would be most useful to us in order

12 to conduct epidemiology that can serve as kind of an

13 early warning. We identify a group of people. We

14 have decided in advance what types of medical

15 information we want to record about them prior to

16 deployment, but we didn't feel as a staff that we

17 wanted to try to prescribe what those tests were.

18 That's the idea we have in mind for the clinical and

19 research working groups is to identify which tests

20 those ought to be.

21 MR. RIOS: Do you know if anything was

22 done before the recent deployment to the Middle East

23 of our troops? Any kind of testing for this most

24 recent deployment? Did they do anything differently

25 recently?


1 MS. GWIN: I think it's -- I don't know

2 specifically the answer to your question. I think

3 it's likely that they did stuff that is substantially

4 different from what they did before the Gulf War

5 because as we heard testimony on in September, DOD has

6 adopted a new protocol for medical surveillance. It

7 involves a better type of medical assessment prior to

8 deployment than they had at that time, but I don't

9 know -- I can't tell you today exactly what they did

10 for those troops.

11 CHAIRPERSON LASHOF: But we do know, or at

12 least according to your memo here, that they have not

13 yet developed a protocol by which they would identify

14 a subgroup for a thorough evaluation and group that

15 would be followed post-deployment and so forth, which

16 is what this is directed to. We think everybody

17 should have a better exam before they go, but this

18 recommendation deals with the specific that they

19 develop a protocol for a subgroup that could be

20 followed so that we're not in the position we are

21 today.

22 DR. CAPLAN: We could see -- and it might

23 tie to this recommendation -- remember we had

24 testimony about that

25 toe-in-the-water effort in the Bosnia deployment?


1 Presumably too they were interested in doing

2 environmental sampling as part of the deployment on a

3 particular subpopulation. It seems to me that might

4 become part of this recommendation or maybe backing up

5 to where the prediscussion is for the recommendation -

6 - I'm not sure where to put it -- but the only thing

7 I've heard since I've been here that got close to the

8 requisite protocol of an in-depth subsample,

9 particularly if you can't really tell who is where on

10 the battle field and what they are exposed to, has

11 been in that little Bosnia toe-in-the-water

12 illustration. I think that's where we might build

13 out. That becomes very crucial for us though in light

14 of the other problems with the unit locator

15 information and so on -- the preimposed and sampling

16 up front, I think we ought to be very precise about

17 that.

18 CHAIRPERSON LASHOF: All right. The point

19 is well taken. Let us move then to the investigation

20 on drugs and vaccines, the finding we've just been

21 discussing. The facts and findings are before you.

22 What I note is we don't have a specific recommendation

23 related to those findings here, but I assume that

24 we're really supporting the recommendation we made in

25 the interim report in this regard.


1 MR. KOWALOK: That's right. Standing

2 behind the initial recommendation and asking them for

3 a refocus of attention on that recommendation.

4 DR. KIDD TAYLOR: So that will be made as

5 the recommendation as they follow --

6 MR. KOWALOK: By making the finding, we're

7 looking for increased or refocused attention to that

8 recommendation that was made in the interim report.

9 CHAIRPERSON LASHOF: And in the final we

10 will basically give that.

11 MS. GWIN: We will pull out that

12 recommendation -- the recommendations we feel like

13 require better focus from the departments will be

14 pulled out again in the final report for attention, so

15 you will see both things.


17 record-keeping.

18 MS. NISHIMI: This is similar to the

19 investigational vaccine and drug issue where we are

20 re-emphasizing a recommendation.

21 CHAIRMAN LASOF: A recommendation that we

22 previously made. Considering what we've now learned

23 with the unit locator, how realistic is it that

24 they're going to be able to develop a better record-

25 keeping during the height of battle? Do we have any


1 sense of how realistic this is?

2 MS. GWIN: Are we talking about the

3 medical record-keeping or the --

4 CHAIRPERSON LASHOF: Oh, I'm sorry. This

5 is medical record-keeping, yeah. No, I was backed up

6 to where people are. The medical record-keeping,

7 hopefully we can do a better job.

8 DR. PORTER: Hopefully in the medical

9 record-keeping arena there is progress being made, and

10 there is evidence that there is progress being made.

11 There is the theater of medical information program

12 which is a part of a larger data collection and

13 integration system. In that regard, many developments

14 have occurred in the Smart cards and in integrating,

15 store and forward information or telecommunications

16 information, so things are happening to improve

17 medical record-keeping, but everybody has to make that

18 a priority, even at the highest echelons, we feel.

19 The joint chiefs of staff and commanders in chief must

20 also give attention to this area as a priority, but

21 there are evidences of progress.

22 CHAIRPERSON LASHOF: Thank you. Let us

23 move then to the research findings. Again, we're only

24 addressing those that were in the interim report. We

25 have a number of others that will come up later in our


1 discussion. Here our recommendations deal with the

2 need for a public advisory committee, and then here's

3 where we get back into the unit locator. It may be

4 more appropriate to ask my question now. Is it

5 realistic to think they can develop a better method of

6 locating the troops?

7 DR. TAYLOR: There is today available

8 bubble position and satellite data that can be

9 deployed at various levels on vehicles, on

10 individuals. I mean the technology is within reach.

11 But it can also be things as simple as good unit

12 discipline -- record your position every day, record

13 your position when you change watches. There is a

14 whole range of improvements that could be made, based

15 on the experience that we have had over the last five

16 years trying to piece together records out of the

17 Persian Gulf. And again, there's a range from, you

18 know, high-tech with bubble positioning to just basic

19 stuff like putting down where you are.

20 MS. NISHIMI: I think it's staff's

21 assessment that given that the situation didn't

22 improve between post-Vietnam and post-Gulf War that

23 things have occurred that DOD could do better.

24 CHAIRPERSON LASHOF: Should we include in

25 our discussion some of the newer technologies to


1 highlight this? Would that be appropriate?

2 MS. NISHIMI: We could in the context of

3 the background. I think that might be appropriate.


5 DR. KIDD TAYLOR: I just had one question

6 about the first recommendation. It says that the

7 research working group should consider justifying a

8 waiver of such a committee only under rare

9 circumstances. Will the rare circumstances be

10 described? I was just wondering why that portion was

11 there instead of just requiring what the coordinating

12 board should require.

13 MS. GWIN: I guess there is always a

14 reluctance to make such a hard and fast rule that

15 people don't have any flexibility.

16 CHAIRPERSON LASHOF: We haven't figured

17 out what the rare is, but we think it should be very

18 rare.

19 DR. KIDD TAYLOR: Very rare. Okay.

20 CHAIRPERSON LASHOF: If there are no other

21 comments on this -- we are running a little late, and

22 I think we should move ahead to the Risk

23 Communication, which is back to tab B. Who is going -

24 - Tom McDaniels is going to come up and walk us

25 through the Risk Communication. Thank you, Tom.


1 MR. McDANIELS: To date, the Departments

2 of Defense and the Department of Veterans Affairs

3 outreach programs have focused on methods of referral

4 to increase participation in the clinical evaluation

5 programs. Few attempts at educating Gulf War

6 veterans, their families and concerned public about

7 environmental hazards to which Gulf War veterans were

8 exposed, probable health effects from potential

9 environmental exposures, and results from ongoing and

10 completed clinical and epidemiologic studies have been

11 made.

12 The Committee heard about the special area

13 of public health education, known as risk

14 communication, at the last meeting in Washington.

15 Staff have summarized essential elements of risk

16 communication raised by the panel. Conducting

17 effective risk communication involves building a

18 communication plan with specific short and long-term

19 objectives using language understandable to lay

20 persons, analyzing the affected community to determine

21 effective methods of presenting health information,

22 sustaining the communication process over a period of

23 time to give the community an opportunity to increase

24 its awareness and understanding, establishing an open

25 process of information exchange between the


1 communicating agency and the affected community, and

2 evaluating the methods of risk communication for

3 effectiveness.

4 Risk communication related to Gulf War

5 veterans' illnesses is not solely about informing

6 individuals who served. In this case, members of the

7 affected community include military active duty,

8 Reserve and National Guard Gulf War veterans and their

9 family members, state veteran service officials and

10 national and local veteran service organizations.

11 Also encompassed are other populations, including

12 social workers and health care providers who come into

13 contact with Gulf War veterans and their reported

14 illnesses.

15 Some of the Department's outreach efforts

16 do provide information to veterans that is educational

17 in nature. The VA's Persian Gulf Review is a

18 quarterly newsletter sent to those veterans who have

19 participated in the VA Health Registry or received

20 other health services from a VA medical center. The

21 newsletter carries brief segments covering recently

22 released information from reports and studies of Gulf

23 War veterans' illnesses, developments concerning

24 eligibility for medical services and disability

25 compensation regulations, and common questions and


1 answers about how to receive medical care.

2 The VA's Persian Gulf Veterans' Illnesses

3 Internet Site also provides a brief and general

4 information, similar in content to the newsletter.

5 Neither the newsletter nor internet site, however,

6 provide comprehensive risk communication information

7 about exposures or epidemiologic studies underway.

8 DOD's internet site, Gulflink, attempts to

9 provide more salient information such as an assessment

10 of health effects from organophosphate exposures and

11 reports the detections of chemical agents during the

12 Gulf War. However, the Committee previously has

13 criticized the pace and thoroughness of this effort.

14 Additionally, staff has found the tone of some of the

15 posted reports patronizing and dismissive of veterans'

16 concerns.

17 DOD's growing lack of credibility,

18 attributable largely to chemical warfare agent

19 exposure investigations, compounds its difficulty with

20 effective risk communication with Gulf War veterans

21 and others.

22 With respect to a specific risk

23 communication notification undertaking, in August 1996

24 DOD initiated a telephone survey of personnel involved

25 in the 1991 US demolition activities at Kamisiyah.


1 Duty survey script directs operators to collect

2 information about the veteran's experience at

3 Kamisiyah and whether the veteran has experienced

4 medical problems believed to be related to service in

5 the Gulf. There is no information in the script

6 explaining the nature of CBW agent as a health risk

7 factor, or the potential associated health effects

8 from CBW agent exposure.

9 Effective risk communication requires a

10 dialogue, a two-way flow of information, opinions and

11 perceptions. DOD and VA have not established obvious

12 means for veterans to provide feedback to departments

13 about their clinical programs and concerns about

14 exposures, or canvassed the Gulf War veterans'

15 community regarding better methods of communicating to

16 the community.

17 It appears that the only way in which a

18 veteran could provide feedback would be through

19 contact with the clinical personnel at local VA

20 medical centers or military hospitals. This, however,

21 does not seem to be a likely route for transmitting

22 concerns to decision-makers. The VA does conduct

23 periodic interactive video teleconference sessions on

24 Gulf War illness related topics for clinical and

25 social work staff, but this format is designed for


1 staff education, not as a formal publicized mechanism

2 of interaction with veterans and other concerned

3 individuals.

4 Likewise, the telephone hotlines are for

5 referrals only, and in the case of DOD's incident

6 reporting line and Kamisiyah investigation telephone

7 survey, a means to obtain accounts of possible

8 chemical agent exposures.

9 Another important type of feedback by

10 which DOD and VA could engage members of the effected

11 community is in the design and execution of

12 epidemiologic studies. In the interim report, this

13 Committee found that public advisory committees might

14 improve communications with the veterans asked to

15 participate in epidemiologic studies, and recommended

16 DOD, DHHS and VA should urge their principle

17 investigators to use public advisory committees in

18 epidemiologic studies of Gulf War veterans' health

19 issues.

20 Clearly, this area of dialogue and

21 feedback is a problematic area with agencies the size

22 of DOD and VA. Nevertheless, creating a dialogue and

23 feedback relationship with the veterans' population is

24 central to effective risk communication and it

25 warrants increased attention from the departments.


1 Veteran service organizations are

2 organized veterans' groups that represent veterans in

3 social and legislative matters at the national, state

4 and local level. Most VSO's, including the American

5 Legion, Veterans of Foreign Wars and the Vietnam

6 Veterans of America have been chartered in public law

7 by congress. VSO's already have an established

8 working relationship with VA in many areas, including

9 working with vet centers on readjustment issues,

10 sitting on the Persian Gulf expert scientific

11 committee, and providing advocates for the disability

12 compensation claims process. There appears to be a

13 role for VSO's in the development and implementation

14 of DOD and VA health risk communication efforts since

15 many VSO's have extensive networks in place throughout

16 the country.

17 An example of VSO's implementing useful

18 risk communication methods is the Self-Help Guide for

19 Veterans of the Gulf War developed by the National

20 Veterans' Legal Services Program and distributed by

21 the American Legion. The guide provides an overview

22 of the nature of Gulf War veterans' illnesses,

23 explains some health risk factors associated with Gulf

24 War service, and describes eligibility requirements

25 for receiving VA medical benefits.


1 The issue of risk communication will only

2 increase in relevancy as more and more information

3 from studies is released with specific findings about

4 the nature of Gulf War veterans' illnesses. These

5 findings might be unclear to veterans, and indeed some

6 of them could offer a message some veterans would

7 prefer be different. In such cases, trust,

8 credibility and interaction and community involvement

9 are key to successful risk communication. It is

10 unknown whether DOD or VA will have personnel in place

11 to conduct effective risk communication once findings

12 from various reports do present.

13 The VA has Persian Gulf coordinators

14 assigned to each medical center, but these personnel

15 have other responsibilities and typically are more

16 involved with clinical case management. Committee

17 staff have already noted the lack of field based

18 outreach after the VA Persian Gulf Family Support

19 Program ended in 1992.

20 From a written response to the Committee's

21 invitation to speak at the September 4th, 1996

22 meeting, it appears that to date DOD, VA and the

23 Persian Gulf Veterans' Coordinating Board have not

24 devised a plan with specific objectives for effective

25 health risk communication. Based on information


1 provided to date, these entities intend on using

2 existing outreach methods for communicating future

3 Gulf War illness related information.

4 The response states, "Already the

5 strategies outlined above have been effectively

6 utilized to disseminate extensive clinical information

7 from both the VA Persian Gulf Health Registry and the

8 DOD Comprehensive Clinical Evaluation Program, as well

9 as preliminary findings from the Naval Health Research

10 Center concerning birth outcomes in children conceived

11 by Persian Gulf veterans."

12 The strategies referred to include the

13 previous and current use of personal letters,

14 newsletters, public service announcements, internet

15 sites and formal outreach activities employing Persian

16 Gulf coordinators at DOD and VA medical centers.

17 There are many messages to communicate in a health

18 risk communication progress, especially with the

19 situation presented by possible health consequences of

20 service in the Gulf War.

21 A process that adequately addresses risk

22 communication in this area involves educating members

23 of the community about the knowns and unknowns of risk

24 assessment, using the media as a conduit of

25 information, having frequent and sustained contact


1 with the affected community, and validating the

2 information and the source of information with

3 appropriate external reviews. Based --

4 CHAIRPERSON LASHOF: I'm just going to

5 suggest that maybe it would expedite things a little

6 bit if we just stopped at this point on the background

7 and ask whether the Committee had any further

8 questions or comments before we go into the findings

9 and then take each finding up and recommendation as we

10 go along. All right.

11 DR. CAPLAN: I think it was probably maybe

12 seven or eight months ago that this Committee began to

13 push open, pry, agitate, find facts about the

14 Kamisiyah incident. It's taken awhile in some ways

15 for the media to move into this area, but it's been a

16 little mini example of risk communication. We had a

17 situation where we had certain facts come forward,

18 other information come forward, and one thing that

19 caught my ear this morning was one of the folks who

20 came here from Kansas City who was at Kamisiyah said

21 that he found out about what took place from 60

22 Minutes. Well, after all is said and done, this is

23 not very good risk communication.

24 I would like to know, since I did manage

25 to get my little web engine going on my computer and


1 went to the Gulf site and watched as different media

2 accounts began to appear and I saw no change in listed

3 information about much of anything, is there a

4 possibility when new facts come to light of having a

5 more systematic response coordinated to veterans'

6 groups and Persian Gulf parties, interested

7 organizations, to really manage risk information? If

8 you find out about it on 60 Minutes that's good for

9 them but it's not too good for the DOD.

10 MR. McDANIELS: This is exactly what we'd

11 like the agencies to explore. I do think there is a

12 role for veteran service organizations to provide

13 effective health risk communication. As I said this

14 morning, they already have a working relationship with

15 the VA in certain areas. I don't think it would be

16 that difficult to just go ahead and extend that

17 umbrella.

18 DR. CAPLAN: I guess what I'm saying is

19 could we -- briefly, did you see anything or did we

20 pick up anything that was done to outreach, manage

21 this during this past six months?

22 MR. McDANIELS: No, I haven't. I know

23 that they have initiated this survey, which is only an

24 information-gathering technique, but I have not --

25 CHAIRPERSON LASHOF: I think the question


1 that we might consider is whether in the background

2 material -- I think you've done a marvelous job of

3 summarizing what we've heard about risk communication,

4 what we know needs to be done and the elements. What

5 we haven't done as much here is look at some examples

6 that have happened and critique what kind of risk

7 communication DOD has utilized, and Kamisiyah is an

8 ideal one to try to do that. We know the DOD held

9 press conferences, gave press releases, but what else

10 did they do to try to inform the veteran community

11 concerning this, and should we or should we not

12 include that in some of the background material here

13 as backup to the recommendations we're going to make?

14 MS. GWIN: We do allude to their efforts

15 to date on Kamisiyah in the background material. We

16 are still waiting to see some of the products of the

17 notification process. They have initiated a telephone

18 survey to try to get -- to identify people who were

19 actually there. They are notifying the troops within

20 a 25 kilometer radius. They are preparing a letter as

21 well. We wanted to wait and see a copy of that letter

22 to see whether it included more information about the

23 health risks to the individual -- what they knew about

24 them, before we commented on that.

25 DR. CAPLAN: I'm just echoing what Joyce


1 said better than I was trying to say, but it is a case

2 study and many people have said to me that their

3 distrust about risk communication is up very high

4 because of lack of information about risk around this

5 incident, not just finding out who was there and what

6 they might be exposed to, but just generally saying,

7 "Here's what's going on. Here's what we're talking

8 about. Here it is on the web site. Here it is by way

9 of briefing veterans' organizations and so on." I'd

10 really like to see us use this as a case study of how

11 well risk communication was handled.

12 DR. KIDD TAYLOR: The only question that

13 I have regarding risk communication would involve more

14 of the occupational environmental hazardous exposure.

15 We heard today regarding exposures to paints that were

16 used without the proper protective equipment. I don't

17 know if that's the responsibility that you have Tom,

18 is to investigate what kind of programs exist

19 currently within DOD to address training to servicemen

20 on their exposures -- occupational exposures -- what

21 they're using when they're working.

22 MS. GWIN: When you get the memo on CRC

23 you will see that staff found there was actually

24 pretty good policy in place in terms of informing

25 workers about what they were using, what kind of


1 protective gear they ought to have, and there wasn't

2 implementation --

3 MS. NISHIMI: Implementation --

4 MS. GWIN: Like many of the things that we

5 have found, it's the implementation in theater.

6 That's the issue, as opposed to policies and

7 practices, theoretically.

8 CHAIRPERSON LASHOF: A policy that isn't

9 implemented doesn't get us very far, so we'll have to

10 look at it.

11 MR. McDANIELS: I would echo that

12 sentiment, just from my own military experience. The

13 policy is definitely there and it was two, four, ten

14 years ago. It's whether it is actually being

15 implemented.

16 CHAIRPERSON LASHOF: Okay. Well, I think

17 you've gotten the message about trying to be more

18 specific and use a case example in our background

19 material, but I think we do -- if we look at the

20 findings now, we are dealing in the findings exactly

21 with the points we've just raised, it seems to me. Do

22 you want to go through the findings now one by one?

23 MR. McDANIELS: Yes. Okay. There are

24 three findings. The first finding was to adjust it.

25 Risk communication is a central issue in the


1 government's credibility on Gulf War veterans'

2 illnesses, but it has been seriously overlooked to

3 date by DOD and VA.

4 CHAIRPERSON LASHOF: Does anybody doubt

5 that? I think we thoroughly agree.

6 MR. McDANIELS: Okay. Finding number two.

7 DOD and VA have not seriously attempted to educate

8 veterans about health effects of service in the Gulf

9 War or to establish a dialogue concerning research

10 programs relevant to the veterans' concerns.

11 The third finding, DOD and VA have not

12 adopted the standard techniques of health risk

13 communication developed and tested by their peers and

14 other federal agencies.

15 CHAIRPERSON LASHOF: Is there any -- I was

16 surprised again this morning to hear some

17 recommendations made that we should recommend that

18 certain research be undertaken when we know that

19 research has been ongoing and has been undertaken, but

20 apparently the veterans are not aware of the amount of

21 research that is going on. I think finding number two

22 is very important. Any other additional findings that

23 anyone feels should be added? If not, let's move to

24 the recommendations.

25 MR. McDANIELS: Staff suggests the


1 Committee consider four recommendations in an attempt

2 to focus the departments on this important issue. The

3 first recommendation, in an attempt to increase

4 veterans' and the public's awareness and understanding

5 of the full range of the government's commitment to

6 address the nature of Gulf War veterans' illnesses,

7 DOD and VA need to re-evaluate the goals and

8 objectives of their risk communication efforts and

9 determine a way to provide the affected community with

10 comprehensive information concerning possible

11 exposures to environmental hazards, potential health

12 effects from risk factors, and explanation of ongoing

13 and concluded clinical and epidemiologic studies.

14 CHAIRPERSON LASHOF: Any questions on that

15 before we go on? Okay. Hearing none.

16 MR. McDANIELS: The second finding, DOD

17 and VA should immediately develop and implement a

18 comprehensive risk communication plan. This effort

19 should move forward in close cooperation with agencies

20 having a high degree of public trust and experience

21 with risk communication.

22 DR. CAPLAN: I must just suggest amending

23 that one to coordinate it with the Gulf War veterans'

24 organization. Is that what you meant?

25 MR. McDANIELS: Agency in this finding is


1 referring to like what we heard in September -- ATSDR

2 or NIOSH. There is a subsequent finding about

3 integrating veteran service organizations.

4 DR. CAPLAN: Yeah.

5 CHAIRPERSON LASHOF: Should we be more

6 specific in here in naming agencies that we're

7 referring to?

8 MS. NISHIMI: Yeah. For example -- I

9 wouldn't want them to only look to those agencies,

10 which is why we didn't. Okay.

11 A It is in the background material.

12 Q Does the Committee feel that then it

13 should move from the background into the

14 recommendation?

15 CHAIRPERSON LASHOF: I think it would

16 help, for example, in the recommendation. Not

17 everyone is going to read the background as thoroughly

18 as we are. Okay. Go ahead with the next one.

19 MR. McDANIELS: The third recommendation,

20 because health risk information and education applies

21 to both the active duty and non-active duty

22 populations, DOD and VA should closely coordinate the

23 Federal government's risk communication effort for

24 Gulf War veterans and other members of the affected

25 community. Departmental commitments to any plan


1 should be viewed as continuous and long-term. A

2 sustained effort is particularly critical, in light of

3 veterans' and public skepticism arising from the

4 recent revelations related to chemical --

5 MR. CROSS: When you say non-active duty,

6 who do you mean by that when you say non-active?

7 MR. McDANIELS: The Reserves and people

8 who are no longer veterans of the Gulf War who are no

9 longer on active duty.

10 MR. CROSS: Okay. Should we then make a

11 comment to include civilians that were there in

12 support of DOD personnel?

13 MR. McDANIELS: We've got a definition of

14 what we consider the affected community is.

15 MS. GWIN: We had considered those

16 individuals as part of the broader public, who we

17 address in more general terms that they should do

18 better risk communication with veterans and the

19 public. Are you asking for DOD and VA to take special

20 responsibility to identify and communicate with

21 volunteers and other civilians?

22 MR. CROSS: Well, I think at some point

23 you can't exclude them, because I mean they are over

24 there in support of the military. I sense that some

25 of them are going to suffer the same Gulf War Syndrome


1 the active duty personnel will. So at some point will

2 they ever be included?

3 MS. GWIN: So how could you describe

4 volunteers in the Gulf in an official capacity or --

5 I'm --

6 MR. CROSS: I know what you mean. I don't

7 have any answer either. I'm just kind of tossing it

8 out.

9 DR. TURNER: Would that be in the

10 background, just in that -- I have a section on the

11 definition of the affected community, how it's

12 comprised. Would you like to include --

13 DR. KIDD TAYLOR: I mean do we have an

14 affected community here?

15 MR. McDANIELS: Did you want that in the

16 recommendation?

17 MR. CROSS: I have no problem with putting

18 it in the background. I've got to admit that the

19 wording non-active duty, that's the first thing I

20 thought of and that's what prompted me to ask the

21 question.

22 MS. GWIN: Okay.

23 MR. CROSS: If that's the wrong term, then

24 maybe we should change the term.

25 MS. NISHIMI: Maybe we could revisit the


1 issue using non-active duty versus trying to redefine

2 the universe of -- I think we could work with this and

3 address Tom Cross' concern.

4 MR. McDANIELS: Okay. The fourth

5 recommendation, need to coordinate a risk

6 communication plan, DOD and VA should engage a veteran

7 service organization as intermediaries and include

8 personnel in leadership positions such as senior

9 enlisted personnel for active duty military and state

10 veteran service officials in an effort to establish an

11 efficient information exchange process where veterans

12 receive accurate information and the departments

13 receive valuable feedback on clinical programs, health

14 concerns and communication efforts.

15 DR. KNOX: That is very good.

16 MR. CROSS: Let me just say this, Tom. We

17 talked about veteran service organizations and at some

18 point the Committee's work is finished and we move on,

19 but the veteran service -- somebody is going to have

20 to pick up the ball and the veteran service committee

21 organizations are going to be there and maybe it is

22 time for them to get more actively involved.

23 MR. McDANIELS: Right. I think this is

24 also a point, that the agencies is also meeting them

25 and engaging them and not just the VSO's going to the


1 agencies but working together. I think from what I've

2 heard from the veteran service organization officials

3 I talked to, I think they are willing to be involved

4 in this process. So it's a matter of the agency's

5 engaging them.


7 additions or corrections? If not, then I think we've

8 completed these two staff memos on findings and

9 recommendations. We're going to adjourn for lunch and

10 we'll resume again at 1:30.

11 (Whereupon a lunch recess was held.)
















1 A-F-T-E-R-N-O-O-N P-R-O-C-E-E-D-I-N-G-S

2 (1:30 p.m.)

3 CHAIRPERSON LASHOF: I think we are ready

4 to resume our meeting. We are now proceeding on to a

5 discussion on the staff memo on Federally Funded

6 Research on Gulf War Veterans' Illnesses.

7 MR. BROWN: Thank you. Since the end of

8 the Gulf War the Federal Government has initiated a

9 substantial research program on Gulf War veterans'

10 health issues, spending some tens of millions of

11 dollars on a total of 80 different studies on

12 different aspects of Gulf War veterans' health.

13 Because of their historical connection to these

14 issues, nearly all of this research is sponsored by

15 the Departments of Defense and Veterans Affairs, with

16 some support from Health and Human Services.

17 Today I am going to discuss staff's

18 analysis of three issues about Gulf War research.

19 First, I am going to talk about the processes and the

20 institutions that have produced today's federally

21 funded research portfolio. Second, I am going to

22 discuss what health issues are being addressed by this

23 research portfolio, and I am going to compare the

24 overall -- this overall effort to staff's previous

25 analyses of what are the major uncertainties about


1 Gulf War veterans' health today.

2 Finally, based on what we've learned, I'm

3 going to talk about some possible recommendations that

4 the Committee might want to consider about how we

5 might do a better job in the future of managing and

6 developing an effective research program for veterans'

7 health issues in general.

8 Today the management of the federally

9 funded research portfolio is the responsibility of the

10 Inter-Agency Persian Gulf Coordinating Board. This

11 board, established in 1984, is made up of the

12 Secretary of Defense, Secretary of Health and Human

13 Services and Secretary of Veterans' Affairs. The

14 research working group of this board carries the

15 primary responsibility for managing and developing

16 Gulf War health-related research. This coordination

17 is not an easy task. The individual projects and the

18 total research portfolio are independently managed by

19 the three lead departments. Each department has its

20 own well established research agendas and funding and

21 management procedures for both its intra and

22 extramural research programs.

23 Nevertheless, the research working group

24 has developed some innovative approaches to this

25 problem. One example includes the three VA university


1 environmental hazard centers, which have successfully

2 brought together multi-disciplinary teams of highly

3 qualified researchers who have expertise relative to

4 Gulf War veterans' health issues, and this has been

5 the subject of previous Committee meetings -- these

6 hazard centers.

7 The creation of a fourth environmental

8 hazard center was announced this year in response to

9 veterans' concerns about reproductive health and birth

10 defects issues.

11 Since its beginning two years ago, the

12 research working group has played a major role in

13 establishing the research priorities in Gulf War

14 veterans' health. In May of 1996, in response to

15 questions from this Committee, the research working

16 group identified and ranked six priority research

17 areas that it considered the most important research

18 questions to look at as far as Gulf War veterans'

19 health.

20 In order, these areas are reproductive

21 health, mortality follow-up studies, stress, illnesses

22 in non-U.S. coalition forces, toxicology of

23 pesticides, chemical weapons agents, and PB, that is

24 Pyridostigmina Bromide, alone and in combination with

25 other risk factors and the toxicology of depleted


1 uranium, solvents and fuels, and finally infectious

2 diseases, especially Leishmaniasis and biological

3 warfare agents.

4 The research working group applied these

5 priorities to the DOD's fiscal year 1995 broad agency

6 announcement which requested research proposals on

7 Gulf War veterans' health issues. This project, the

8 broad agency announcement, generated 111 extramural

9 proposals which were externally peer reviewed and the

10 final 12 projects were selected by the research

11 working group. These 12 studies focus on a range of

12 health issues including the effects of Pyridostigmina

13 Bromide, PB, in combination with other agents,

14 multiple chemical sensitivity, health effects of

15 stress, diagnostic tools for Leishmaniasis, health

16 status of Gulf War veterans in the United Kingdom,

17 birth defects, muscle function and fatigue in Gulf War

18 veterans, women veterans' health issues, central

19 nervous system functioning in Gulf War vets and the

20 effects from emissions from burning leaded diesel fuel

21 in unvented tents.

22 In addition to these 12 studies which I've

23 just described, staff identified 68 additional studies

24 in addition to the 12, that together make up the

25 entire federally funded research portfolio on Gulf War


1 veterans' health. This adds up to a total of just

2 about 80 studies.

3 What topics are addressed by these 80

4 studies? Can I have the slide, please? This pie

5 chart in seasonal colors is an attempt to illustrate

6 the distribution of the different research that is

7 going on and the different topics that are being

8 covered by this research -- the federally funded

9 research portfolio.

10 It shows the 80 studies in terms of

11 individual studies. Table 1, which is included in

12 your briefing books, also lists the studies arranged

13 by the type of study, the focus of the study, it shows

14 the supporting federal agency, the health issues under

15 investigation and the location and affiliation of the

16 research institution doing the study, which includes

17 both federal laboratories and university laboratories,

18 and the anticipated completion date for each study.

19 Staff have reviewed the research proposals

20 and other available information for each of these

21 studies. External scientific review, which was

22 recommended in the Committee's interim report, is an

23 important aspect of research and was incorporated for

24 at least the larger studies in this collection --

25 larger being studies funded at over $100,000. per


1 year. Some of the smaller VA sponsored studies are

2 more variable in this respect.

3 These 80 studies fall into three major

4 categories -- research categories. The first category

5 are general epidemiologic research on the health

6 status of Gulf War veterans today. The second

7 research category is research on specific health

8 outcomes such as stress, birth defects or muscular-

9 skeletal problems and other health issues. The third

10 category of research is research on the health effects

11 of specific risk factors such as chemical weapons or

12 depleted uranium.

13 There are a total of 18 epidemiologic

14 studies, or 23 percent of the total, which include 17

15 general epidemiologic studies and 1 cancer survey.

16 These studies evaluate the occurrence of disease or

17 death in Gulf War veterans and the factors that

18 influence their occurrence, severity and outcome. The

19 individual studies of this segment of the total

20 research are evaluating different groups of veterans

21 and different diseases and health outcomes, and as I

22 am sure you all know, several of the major federally

23 funded studies on epidemiology of Gulf War veterans

24 were the subject of the Committee's interim report.

25 Also as described in the interim report,


1 the results from epidemiologic research is crucial to

2 our understanding of Gulf War veterans and the health

3 problems that they may be suffering today. When these

4 studies are completed, this research will answer some

5 basic questions about the health of Gulf War veterans,

6 including are Gulf War veterans, as a whole, suffering

7 from specific symptoms, diseases and death at a

8 greater rate than seen with veterans who did not serve

9 in the Gulf War, and if they are, what are these

10 specific diseases or causes of death which have

11 increased? These results will also be crucial for

12 identifying future research priorities.

13 Federally funded research on health

14 outcomes focuses on a variety of issues including

15 multiple chemical sensitivity, stress including PTSD

16 and other effects, chronic fatigue syndrome and

17 fatigue and some others -- muscle function,

18 reproductive health, and so forth.

19 Research on specific Gulf War risk factors

20 is mostly based on using laboratory animal models --

21 rats or other animals, mice sometimes, and it's

22 looking at issues like chemical weapon effects,

23 depleted uranium -- at least one of the studies, for

24 example Pyridostigmina Bromide in combination with

25 other risk factors.


1 Is this research portfolio, taken as a

2 whole, directed at the right questions about Gulf War

3 veterans' health? At the July Committee meeting in

4 Chicago, staff reported its analysis of the health

5 effects expected from various Gulf War risk factors.

6 Based on an exhaustive literature review, on

7 discussions with scientists and relevant regulatory

8 agencies and testimony heard from experts at our

9 Committee meetings, staff identified very few

10 uncertainties about risk factors and health outcomes

11 commonly associated with Gulf War service.

12 Key uncertainties about Gulf War veterans

13 that were identified at that meeting include the long-

14 term health effects from stress, the long-term health

15 effects from low-level exposure to chemical weapon

16 agents, the long-term health effects from exposure to

17 known carcinogenic immunogenic compounds such as

18 mustard agent, and finally possible interactions

19 between PB and other agents.

20 As shown in this figure, the current

21 federally funded research portfolio is a directly

22 significant effort at answering most of these

23 uncertainties. Other portions of the research

24 portfolio, such as that on Leishmaniasis studies or

25 depleted uranium, can only be justified as


1 anticipating health issues in future conflicts.

2 Management of the federally funded

3 research portfolio, which as I mentioned is primarily

4 the responsibility of the research working group, does

5 respond to changing circumstances and the news.

6 Recent revelations about possible exposure of some

7 U.S. service personnel to chemical weapon agents at

8 Kamisiyah has increased attention to research on long-

9 term health consequences of exposure to chemical

10 weapon agents.

11 The research working group is currently

12 attempting to develop an appropriate response to this

13 issue. As you can see now, there are only two studies

14 on chemical weapons. As reported at the July

15 Committee meeting, staff determined that exposures to

16 chemical weapon agents is unlikely to be a source of

17 health problems in Gulf War veterans today, however

18 staff also recommended that further research on groups

19 with well-defined exposures to nerve agents is

20 warranted because of the size of the population

21 exposed to such agent, which basically includes all

22 people living within the United States from pesticide

23 exposure, and because there are only a few well-

24 designed studies that indicate there are no long-term

25 health defects from low level exposures.


1 The research working group has

2 approximately 5 million dollars to spend on this type

3 of research directed at research on low level effects

4 from chemical weapons. This money came from FY96 DOD

5 appropriations for collaborative research by DOD and

6 VA. The research working group has begun by funding

7 three previously unfunded proposals based on animal

8 model experiments with 2 1/2 million dollars, roughly

9 half the total that they have to work with.

10 They next plan to fund additional clinical

11 and epidemiologic studies with the remaining funds.

12 It appears likely they will also be getting an

13 additional 10 million dollars from FY97 funding, DOD

14 funding which is earmarked by Congress specifically

15 for research on low-level effects. The research

16 working group has not yet considered how to apply this

17 funding and they are now facing the task of developing

18 a coherent overall plan for research that addresses

19 this issue -- this health issue.

20 Finally, I want to talk about the future

21 of federally funded research on veterans' health

22 issues. Several of the issues uncovered by this

23 Committee on Gulf War veterans' health have also

24 appeared following previous conflicts that involve

25 U.S. service personnel. These include the lack of


1 information on overall health status of Gulf War

2 veterans, the development of effective epidemiology in

3 the absence of baseline exposure and health

4 information, as we heard earlier today, risk

5 communication with veterans who are concerned about

6 environmental hazards that they may have been exposed

7 to, and uncertainties about the health consequences of

8 environmental exposures. All of these questions are

9 likely to appear again in the aftermath of future

10 conflicts that involve US service personnel.

11 Responsibility for resolving these issues

12 lies today within the domain of several departments

13 and agencies, but it appears to be a principle focus

14 of no one department or agency. Many other

15 departments could also contribute valuable expertise,

16 such as the Environmental Protection Agency, the

17 Central Intelligence Agency, the Department of Energy,

18 the National Science Foundation or the Departments of

19 Commerce and State. All of these individual entities

20 are members of the National Science and Technology

21 Council, NSTC, which is an inter-agency coordinating

22 body established to ensure cross agency attention to

23 matters of critical national importance. The National

24 Science and Technology Council has authority to

25 establish working groups to direct attention to


1 specific tasks that lie beyond the expertise of any

2 single department.

3 The lessons learned from the study of Gulf

4 War veterans' health issues point to the need for the

5 government to formulate a comprehensive strategy to

6 deal with issues that arise in the aftermath of any

7 conflict. These common issues include health issues,

8 outreach and risk communication, record-keeping,

9 research, biological and chemical warfare

10 preparedness, application of technology, and

11 international cooperation and coordination.

12 A specific charge to relevant departments

13 to develop a plan in a timely manner and to have that

14 plan reviewed by an appropriate non-governmental

15 expert would help ensure that these chronic concerns

16 receive attention at the highest national levels.

17 With those points, I have both some findings and

18 recommendations for the Committee to consider. Should

19 I just go through the --

20 CHAIRPERSON LASHOF: Let's stop at this

21 point and see if there are any questions about the

22 background material or any issues someone wants to

23 raise before we get to the findings. I was wondering,

24 Mark, whether you think it would be helpful to include

25 a table or a pie chart showing how the money is


1 actually allocated. We've got, you know, the number

2 of different studies, but -- you're smiling. It makes

3 me think there must have been a debate among staff.

4 MR. BROWN: The subject has come up

5 before.

6 CHAIRPERSON LASHOF: I figured it would,

7 but go ahead and tell me why you didn't do it.

8 MR. BROWN: I think that there is no

9 perfect way to represent this distribution. Money

10 would be another way, the dollars spent on the

11 different projects, but I think it would have its own

12 problems. I think basically what you would see is

13 that the epidemiology studies would spread out and

14 tend to cover up some of the other studies, just

15 because epidemiology research tends to be more

16 expensive -- comparatively more expensive.

17 The second problem is that it turns out

18 it's very difficult to get your hands on information

19 about costs. We've spent a significant amount of

20 staff time calling up principle investigators and

21 research organizations where this research is being

22 carried out to get cost information, and it's been

23 very difficult.

24 For instance, in some cases the way VA

25 counts research it may have a couple of people


1 designated as principle investigators, and their

2 salary may be overhead. So some of the projects that

3 we're looking at have zero money associated with them,

4 which is obviously not accurate. I mean they're

5 spending money, but the way they do the accounting, it

6 just turned out that -- although there may be a way of

7 -- it may be interesting to see how the monies were

8 distributed across different topics. It just turned

9 out to be too difficult to do -- unless you make us.

10 CHAIRPERSON LASHOF: I can't make you do

11 the impossible. Is that what you're suggesting?

12 MR. BROWN: We can do anything.

13 CHAIRPERSON LASHOF: Would it help at

14 least to tell us what the total amount has been spent

15 each year, or even that is probably not very --

16 MR. BROWN: I think we can get that data,

17 but it requires we're going to have to work with both

18 VA and DOD to get at least the aggregate amounts on an

19 annual basis. I think -- we don't have it now, but I

20 think we can do that, to look at the overall amounts

21 per year. I think that that would be useful to give

22 us at least a sense of the overall level of effort.

23 I think that's important, yeah.

24 CHAIRPERSON LASHOF: Okay. The other is

25 on the actual briefing memo itself. You didn't read


1 it all, thank you, but --

2 MR. BROWN: I wrote it all.

3 CHAIRPERSON LASHOF: I read it. You have

4 a sentence which isn't very clear to me exactly what

5 thought you're trying to get across. This deals with

6 a summary of the research. You make a statement that,

7 "Since research resources are not unlimited, the

8 question exists as to whether the RWG should direct

9 awards first and/or exclusively toward the question

10 specific to the needs of Gulf War veterans." What are

11 you trying to suggest?

12 MR. BROWN: I tried -- in my remarks today

13 I tried to bring up that issue without harping on it.

14 I think some of the research -- and I think a good

15 example of this is the research that is going on today

16 on Leishmaniasis. As far as I know, no one on any

17 side of this issue is seriously proposing that

18 Leishmaniasis is an important risk factor for Gulf War

19 veterans. There are a few individuals who are

20 diagnosed with Leishmaniasis, but overall it's

21 probably not an important risk factor. Nevertheless

22 it is counted by the research working group as part of

23 the total research portfolio.

24 On the other hand, it's probably perfectly

25 legitimate research. We do not have good quality


1 diagnostic tools -- non-invasive diagnostic tools for

2 this particular disease. It's endemic to many areas

3 of the world. So I think it's perfectly reasonable to

4 do such research. I guess the question is, is it

5 reasonable to count it as part of the total package

6 directed at Gulf War veterans' health issues. And

7 second of all, if given -- the point of that sentence,

8 I think, is given that we have limited resources, you

9 know, we can't do all the research that might be done,

10 wouldn't it make more sense to focus on the issues

11 that are clearly the most necessary to understand Gulf

12 War health issues.

13 CHAIRPERSON LASHOF: Okay. Well, may I

14 suggest you rework the sentence, because I interpreted

15 the exact opposite. I thought you were trying to say

16 something like well, you know, should they just be

17 working on the Gulf War or shouldn't the research

18 money go to things that have a broader -- I wondered

19 why you wanted to make that point.

20 MR. BROWN: Well, if you heard it that

21 way, we better work on it. Sure.

22 CHAIRPERSON LASHOF: Okay. That's the

23 only ones I had in relation to the actual background

24 material. Does anyone else have any questions on the

25 background material? Nothing. We can move ahead then


1 and take a look at your specific findings.

2 MS. GWIN: May I make a quick statement

3 here?


5 MS. GWIN: As you go through the findings

6 and recommendations you're going to hear some things

7 that are familiar to you. What we've done is take all

8 of the recommendations that we have made in previous

9 meetings that deal with research issues and repeated

10 them here so that you can have kind of a comprehensive

11 overview of what the committee has considered for

12 research.

13 CHAIRPERSON LASHOF: I think that's a very

14 good idea.

15 MR. BROWN: Okay. The first finding,

16 overall the government's current research portfolio on

17 Gulf War veterans' health is appropriately weighted

18 towards the epidemiologic studies and studies on

19 stress-related disorders that are the most likely to

20 improve our understanding of Gulf War veterans'

21 illnesses. For the most part, the government's

22 prioritization process has worked in this case.

23 CHAIRPERSON LASHOF: Any -- we'll take

24 them each as we go. I'll wait a second and if no one

25 has anything we'll move right along. Okay.


1 MR. BROWN: Okay. The second finding, the

2 government's research effort has some notable gaps in

3 areas that are relevant to Gulf War veterans'

4 illnesses, yet some of the research funds recently

5 awarded under the auspices of the inter-agency Persian

6 Gulf coordinating board, that's the research working

7 group, can not reasonably be characterized as directed

8 at questions specifically about Gulf War veterans'

9 illnesses.

10 For example, uncertainties remain about

11 the long-term health effects of low-level exposure to

12 chemical weapon agents, including both nerve agents

13 and mustard agent. The current research portfolio

14 only has a minimal focus to this issue, although as

15 described earlier the research working group is

16 expanding this particular area.

17 On the other hand, research on

18 Leishmaniasis will only be useful in the context of

19 protecting troops in future conflicts or for global

20 assistance programs and has no relevance to the health

21 of the vast majority of Gulf War veterans today.

22 CHAIRPERSON LASHOF: Okay. This is where

23 you're making the point that I didn't quite follow

24 earlier. Let's stop for a minute on that because it

25 is implying that -- I guess we're implying there that


1 we think maybe the studies on Leishmaniasis aren't

2 appropriate out of this fund, so maybe they should

3 come from some other funds. Does anyone have some

4 strong feelings one way or the other on that subject?

5 How significant a portion of the funds is this?

6 MR. BROWN: In terms of funding, I don't

7 know. It's six studies, including some from the

8 recent VAA.

9 CHAIRPERSON LASHOF: Are there any other

10 examples of things you feel that they are doing at

11 this point supposedly by the research working group on

12 Gulf War that you think aren't relevant, or is

13 Leishmaniasis the only one?

14 MR. BROWN: No. I picked Leishmaniasis

15 because I think it's a good example to understand, but

16 I would apply that to a number of the other risk

17 factors based on what we discussed at the Chicago

18 meeting in which we discussed what health outcomes we

19 might expect from the different risk factors,

20 including depleted uranium, chemical weapons, well

21 fire smokes and so forth, and where we came to the

22 conclusion that it's unlikely that most of those risk

23 factors are likely to cause any health effects today,

24 then by that argument research --

25 CHAIRPERSON LASHOF: Well, if we're doing


1 research on those, the only reason to be doing them

2 however would be because there still is concern

3 related to the Gulf. It's not like we're doing it

4 because there is a concern of some future war.

5 MR. BROWN: Well, not necessarily. I

6 think in the case of depleted uranium, it's likely

7 that it will be used -- you know, I would argue most

8 of these risk factors are likely to be of concern in

9 future conflicts.

10 DR. KIDD TAYLOR: Even Leishmaniasis, too?

11 MR. BROWN: Well, yes. It's endemic to --

12 DR. KIDD TAYLOR: That's what I thought.

13 MR. BROWN: All around the world. It's

14 likely that U.S. troops in conceivable future

15 deployments might come up against it.

16 DR. KIDD TAYLOR: And the question is if

17 we did not have studies regarding that, how --

18 CHAIRPERSON LASHOF: Yeah. I myself think

19 it's perfectly appropriate at this point to look at

20 both -- those that are important to this and have at

21 least been postulated, as well as those that would

22 have an impact on the future. I'm not sure we need to

23 make that distinction or make an issue of this, but

24 that's just my opinion. I don't know how the rest of

25 you feel or how the staff feels.


1 MR. BROWN: I definitely try to soft

2 peddle that point a little bit. I think the research

3 on Leishmaniasis, my personal opinion, is it's

4 probably a good idea for the future. On the other

5 hand, one hopes that we learn some lessons from what

6 types of health problems arose during the Gulf War

7 that we could apply to future -- even if we don't need

8 to know that to understand more about Leishmaniasis to

9 understand Gulf War veterans' health, it's based on

10 what happened in the Gulf War, a better diagnostic

11 tool. It could be very useful, clearly. So we should

12 -- you know, man learns from his mistakes and her

13 mistakes.

14 MS. GWIN: That's where you get back to

15 the idea of there not being infinite resources. We

16 don't know exactly how much money the government is

17 spending on Gulf War veterans' illnesses research, but

18 assuming they have a limited amount of money that they

19 are willing to devote toward that, we think they ought

20 to direct that money to the questions that are

21 specific to Gulf War veterans' illnesses and they

22 ought to find another pot of money to direct to

23 research that will help with future conflicts, in an

24 ideal world. So it's -- if you want to say that they

25 spent 20 million dollars to date, they may come up


1 with additional monies in the future -- would this

2 Committee like to say all that money or 90 percent of

3 that money, some substantial fraction of that money,

4 ought to be directed at the primary uncertainties

5 about Gulf War veterans' illnesses which we have laid

6 out before you?

7 DR. KIDD TAYLOR: To kind of split that

8 difference, what the Committee could consider is that

9 -- as Holly alluded to at the end -- the issue is what

10 new monies can be directed as opposed to the existing

11 pot of money, if you want to take --

12 DR. CAPLAN: Just for a number, under --

13 we don't know the dollar amount, but we do know under

14 risk factor, group 36 of 25 are Leishmaniasis, so it's

15 25 percent roughly of the studies. I don't know what

16 the dollar amount is.

17 MR. BROWN: That tells you something.

18 Yeah.


20 something. I guess the question is whether we feel at

21 this point that there are significant areas of

22 research related to the Gulf War that aren't being

23 funded now that we think should be given high priority

24 to future funding, or whether we feel that these array

25 of studies -- granted we don't have answers yet, but


1 that the studies that are funded will provide the

2 answers we need and that we're not recommending

3 additional new money be directed at specific issues,

4 then I'm less concerned about the fact that we're

5 spending some money that would help us in the future.

6 We do have to worry about future wars, unfortunately.

7 MR. BROWN: Well, my take on it is if

8 these studies are answering the key outstanding

9 questions plus a little bit more, we're getting a

10 little extra.

11 DR. CAPLAN: It might be -- one way to put

12 that recommendation could be that instead of trying to

13 highlight particular areas to look at, that in setting

14 the funding out that they give an explanation of how

15 it is that it addresses the specific risks that are

16 believed to have been present in the Gulf and why it

17 might make sense to extend it further. In other

18 words, it's to meet that rationale. That's what we

19 want. We want to make sure no one looks down this

20 list later and says, "Why are you funding this? It

21 has nothing to do with anything."

22 CHAIRPERSON LASHOF: Why don't you play

23 with that a little bit more and give us another one

24 next time around.

25 MR. BROWN: I've got a couple of more


1 findings to get through here.

2 CHAIRPERSON LASHOF: Okay. Next finding.

3 MR. BROWN: Where was I? I guess finding

4 three. Stress appears to be a major contributing

5 factor to illnesses being reported today by Gulf War

6 veterans. Stress however is the least well understood

7 in terms of diagnoses, physiologic supply and

8 defective prevention and treatment strategies.

9 Additional attention to basic and applied research on

10 stress related disorders across the entire health

11 related federally funded research portfolio would

12 benefit DOD's and VA's capabilities to manage combat

13 stress and its effects in the future.

14 CHAIRPERSON LASHOF: Agreed? Agreed.

15 MR. BROWN: Next finding. The efforts of

16 the coordinating board's research working group would

17 benefit from the active participation of additional

18 representatives from the Department of Health and

19 Human Services and other federal agencies with

20 relevant expertise. In particular, the Department of

21 Health and Human Services has historic strengths in

22 public health that currently are contributing to the

23 research working group's efforts, however many

24 Department of Health and Human Services basic

25 biomedical research activities such as those of the


1 National Institutes of Health are only peripherally

2 involved, if at all.

3 CHAIRPERSON LASHOF: Would you also

4 include in there the National Institutes of

5 Environmental Health Sciences and CDR as well?

6 MR. BROWN: The thought is -- we gave an

7 example, and maybe we should expand on that to make it

8 -- the thought was to make it all-inclusive.

9 CHAIRPERSON LASHOF: I think it would help

10 if you at least expand to at least one or two more.

11 MR. BROWN: Sure. We're not singling out

12 any.


14 comments on that? Okay. Moving right along.

15 MR. BROWN: Next finding. VA's May 1996

16 solicitation to establish a new environmental hazard

17 center which is focused on reproductive health and the

18 development outcomes from environmental exposures is

19 an important first step to respond to veterans'

20 concern about these issues.

21 CHAIRPERSON LASHOF: Okay. That's fine.

22 MR. BROWN: Next finding. Many issues

23 related to the post conflict health concerns of Gulf

24 War veterans are common to the aftermath of military

25 engagements in general, and governmental


1 responsibility to address such concerns spans the

2 missions of several federal departments and agencies.

3 Resolving these issues in a timely and effective

4 manner requires inter-agency coordination at the

5 highest levels of government.


7 MR. BROWN: And of course there is a

8 recommendation to go with that.


10 MR. BROWN: Okay. I'll move right along

11 to the corresponding recommendations. The first

12 recommendation, the Department of Defense, through the

13 coordinating board's research working group, should

14 plan for further research on the long-term health

15 effects of low-level exposure to organophosphorus

16 nerve agents such as Serin, Soman and various

17 pesticides, based on studies of groups with well

18 characterized exposures. We include the following

19 suggestions.

20 The first is cases of U.S. workers exposed

21 to nerve agent pesticides in the United States.

22 Second, civilians exposed to the chemical warfare

23 agent Serin during the 1994 terrorist attacks in Japan

24 -- two attacks. Finally, an appropriate subset of any

25 U.S. service personnel who were exposed during the


1 Gulf War. The research working group should begin

2 this effort by consulting with appropriate experts,

3 both governmental and non-governmental on

4 organophosphorous nerve agent effects. Studies that

5 are based on animal models are much less likely to

6 shed light on health symptoms of Gulf War veterans

7 today and should be given lower priority.

8 CHAIRPERSON LASHOF: Could you comment

9 further on that? Why have you reached the conclusion

10 that animal models are not going to be helpful? We

11 certainly don't want to do experiments on humans --

12 MR. BROWN: Of course not.

13 CHAIRPERSON LASHOF: Especially combining.

14 MR. BROWN: Well, the combination effects

15 is a different situation.


17 MR. BROWN: But specifically I think in

18 general the best data about health effects, if you're

19 concerned about human effects, is with -- if you can

20 get data from humans. We have very well characterized

21 exposure groups to these types of agents, both -- from

22 several unfortunate incidents in Japan from these

23 terrorist attacks and also from occupational exposure

24 to these types of agents here in the United States

25 where the key feature is that the exposure is very


1 well characterized.

2 The second point is that we're looking for

3 fairly subtle effects. I think it's pretty clear.

4 We're not looking for mortality, probably. We're

5 looking for fairly subtle effects, which are primarily

6 in the neuropsychological category. My thinking is

7 that animal models are not good for determining these

8 types of effects, in general.

9 As a corollary, my concern is if we test

10 chemical agents at low levels -- not effects where you

11 get overt poisoning, but at low levels -- that it's

12 going to be very difficult to get results that are

13 going to be interpretable in terms of what's happening

14 to humans. You know, it's hard to look for subtle

15 neuropsychological effects in a rat or a mouse.

16 MS. NISHIMI: I would also add that this

17 goes to the fixed pool of funds argument. We're not

18 saying that animal models are worthless. It's that

19 weighed against these three identified populations, it

20 should be given a lower priority.

21 MR. BROWN: Yeah.

22 MS. NISHIMI: They've already obligated 2

23 1/2 million dollars for animal studies.

24 MR. BROWN: And I guess my opinion is that

25 it's unlikely that those studies are going to be


1 helpful.

2 DR. KIDD TAYLOR: Then what would be the

3 proposal for an alternative? Clearly when you're

4 researching those drugs or something like that you

5 would not use humans.

6 MR. BROWN: Well, as I say, unfortunately

7 we have humans exposed to these agents, and my point

8 is to use an epidemiologic occupational health

9 approach and follow these studies of populations of

10 people.

11 DR. KIDD TAYLOR: But I thought the

12 information there was inconsistent. I mean we have a

13 group that we can follow?

14 MR. BROWN: Yes. The examples I can think

15 of are in general for organophosphorous agents. Some

16 of the states in the U.S. in particular have excellent

17 programs that monitor exposure of workers to pesticide

18 agents, so that would be one population.

19 DR. KIDD TAYLOR: Using a different

20 population?

21 MR. BROWN: I'm sorry. Yeah.

22 DR. KIDD TAYLOR: hat's what I'm trying to

23 get in my mind.

24 MR. BROWN: Yeah. Because the problem

25 with the Gulf War veterans is that characterizing


1 exposure is going to be very difficult. I think

2 that's pretty clear.


4 MR. BROWN: The second group is the

5 Japanese civilians who were unfortunately exposed

6 during the Tokyo --

7 DR. KIDD TAYLOR: Now I get it.

8 MR. BROWN: I'm sorry.

9 CHAIRPERSON LASHOF: Would it be helpful

10 if this were just reworded somewhat to say something

11 along the line that results of the studies of known

12 exposed humans will be more revealing than the animal,

13 and lower priority should be given to animal models,

14 or something like that?

15 MR. BROWN: That was the sense --

16 DR. KIDD TAYLOR: That would be helpful.

17 MR. BROWN: You want to make it clear?

18 Okay.

19 CHAIRPERSON LASHOF: That's the idea. I

20 mean if we can understand it, then the feds might

21 understand it.

22 MR. BROWN: That's a good suggestion.

23 DR. CAPLAN: Just related to this -- this

24 may be the first time anybody's called for funding

25 this kind of thing. I want to see what you think


1 about this work and the staff. On the exposure we've

2 gotten a lot of information and people have come

3 before us and said at different times they know these

4 things are bad and they're bad quickly and instantly,

5 and they're not as worried about low level exposures

6 at some level. We've heard that a number of times.

7 Would it be useful to encourage funding of

8 state-of-the-art overview review med analysis type

9 things as well as the primary? In other words, this

10 sort of says let's do more with what might be out

11 there for humans and take advantage of that. But I

12 have the feeling that what is known maybe isn't pulled

13 together -- you know what I'm saying? There's sort of

14 this tension that these substances are so bad and

15 intended to be lethal very quickly and that the low

16 level exposure thing isn't a problem given what's

17 already known. Can we encourage some sort of review

18 oversite med analysis, something like that?

19 MR. BROWN: Well, I guess to do some type

20 of med analysis, for instance, assumes that you have

21 a number of

22 --a handful of studies.

23 DR. CAPLAN: Yeah.

24 MR. BROWN: Frankly, I was shocked to

25 learn -- to realize how few studies -- there are a lot


1 of studies with humans poisoned at -- that were

2 severely poisoned by these types of agents and then

3 survived. You can follow them and you can find long-

4 term effects. There are remarkably few -- a couple of

5 studies -- that look at humans where you didn't have

6 overt poisoning, where maybe you had no symptoms. You

7 know they are exposed but you had no -- you couldn't

8 see any of the normal symptoms we associate with the

9 acute poisoning from these agents.

10 I am surprised, as I say, because of the

11 breadth of the exposure to these agents. Fortunately

12 there aren't a lot of occupational poisonings,

13 although there are some in the United States area.

14 There are deaths every year from these types of

15 agents. But basically every American is exposed to

16 trace levels of organophosphorous agents in their

17 diets because of the use of pesticides, and the policy

18 assumption is that this is okay, that this is safe.

19 I believe it probably is. There is no reason to think

20 that it isn't.

21 Nevertheless, there are scant studies

22 where people have followed these types of issues, and

23 I think you could make the argument that it would be

24 prudent to maybe do some additional studies, given the

25 size of the exposed population. But I think as far as


1 doing a med analysis to come up -- we don't have the -

2 - we aren't quite there yet.

3 CHAIRPERSON LASHOF: There is an awful lot

4 of use of pesticides used much less carefully in the

5 developing world than here. Is there much literature

6 on exposure and follow-up, and would it be fruitful to

7 look at populations in the developing world the way

8 pesticides are used indiscriminately?

9 MR. BROWN: In principle, yes. If you

10 look at WHO's figures for pesticide poisonings around

11 the world, severe poisoning is much, much more likely

12 to occur in developing countries, possibly because of

13 less rigorous control and so forth. On the other

14 hand, it may be more difficult to conduct a study.

15 You would have -- it might be more difficult to -- I

16 think the key thing to doing this study here is

17 getting populations where the exposure is well

18 characterized, and that might be difficult in

19 developing countries. Unfortunately we have a good

20 sized population here in the United States of

21 occupational exposures where the exposures are very

22 well characterized. I think to do these studies

23 adequately, having a really good characterization of

24 what the exposure levels were, will be crucial. There

25 are a lot of studies that purport to look at low-level


1 effects, but when you look at them they really have no

2 idea of were they exposed to a lot or a little or was

3 it over a long period of time or short period of time?

4 It is just impossible retrospectively to be certain

5 what the exposures are. So to get useful information,

6 I think, understanding exposure is going to be

7 crucial.

8 CHAIRPERSON LASHOF: Okay. Anything more

9 along that line? Okay. Next one.

10 MR. BROWN: I've forgot where I am here.

11 Let's see. Okay. Next finding. Since a number of

12 Gulf War risk factors are potential human carcinogens

13 that could result in increased rates of cancer

14 beginning decades after exposure, the VA should

15 continue to monitor Gulf War veterans through its

16 ongoing mortality study for increased rates of lung,

17 liver and other cancers.


19 MR. BROWN: Next recommendation. Because

20 depleted uranium ammunitions are likely to be used in

21 future conflicts involving U.S. service personnel, the

22 VA should continue to research that closely monitors

23 the health status of individuals with imbedded

24 fragments of depleted uranium shrapnel in order to

25 elucidate the health effects of this type of


1 ammunition.

2 DR. KNOX: With both of these

3 recommendations, if they do find higher rates, are we

4 going to recommend that they do anything about it?

5 MR. BROWN: We won't be here, but of

6 course --

7 CHAIRPERSON LASHOF: The question is

8 should we be adding something on that?

9 MR. BROWN: And if they find something --

10 CHAIRPERSON LASHOF: It would go without

11 saying that if they found something there would be

12 action taken.

13 MR. BROWN: I guess the implicate

14 assumption is that if you found something you would

15 then take whatever the next step was suggested.

16 CHAIRPERSON LASHOF: It would probably be

17 covered under current compensation.

18 DR. KNOX: Dr. Cassells, do you think that

19 would be covered under current compensation laws if

20 they did find something that they would

21 retrospectively go back and cover it? You have a

22 pretty good knowledge of that.

23 DR. CASSELLS: That is a reasonable

24 assumption to make. Yes.

25 MR. BROWN: I mean I think that's what's


1 happened with Vietnam era veterans. As new research

2 turns up, some connection.

3 CHAIRPERSON LASHOF: It might be something

4 we'll deal with this other question of what kind of

5 follow-up. You were skipping around. We'll come back

6 to that. You might keep that in mind when we get to

7 recommendations that are going to be followed.

8 DR. KNOX: Okay.


10 MR. BROWN: To facilitate future research,

11 Department of Defense should continue to collect and

12 archive serum samples from U.S. service personnel when

13 feasible.


15 MR. BROWN: The next recommendation. The

16 research working group should more thoroughly consult

17 with other federal agencies with relevant expertise,

18 such as the National Institute of Health, on basic

19 clinical and epidemiologic research. This is

20 particularly true for stress-related disorders and on

21 reproductive health where the National Institute of

22 Health has extensive programs of international

23 stature.


25 MR. BROWN: Last recommendation. The


1 assistant to the president for Science and Technology

2 should establish an ad hoc working group of the

3 National Science and Technology Council, the NSCC and

4 develop an inter-agency plan that addresses health

5 preparedness and readjustment to veterans and families

6 following future conflicts and peace-keeping missions.

7 The President's Committee advisors on science and

8 technology and other non-governmental experts as

9 appropriate should be asked to review the plan 12

10 months after the National Science and Technology

11 Council working group is established, and again at 18

12 months to ensure national expertise is brought to bear

13 on these issues.

14 CHAIRPERSON LASHOF: Let's stop over that

15 one. I think that's excellent in terms of looking to

16 the future, but I also wonder whether that same group

17 or another group under the assistance of the President

18 shouldn't also be charged with following up on

19 reviewing the implementation of the agency's -- of the

20 recommendations in this report, and periodically

21 reviewing the results of all of the research that's

22 ongoing. My fear is that we've spent a year and a

23 half pushing hard looking at these issues, and we're

24 going to be at the point of saying that there is a

25 great deal more research to be done, that the


1 appropriate research is underway and the real answers

2 will have to come from that research. I would like to

3 feel that there is some group that would see that the

4 recommendations we make are implemented, that would

5 periodically review the results of the research and

6 see that appropriate action was taken. It would seem

7 to me that this would be an appropriate space maybe

8 somewhere else in the report, but going on a similar

9 role for a committee set up under the assistant to the

10 President's for science and technology policy.

11 MS. GWIN: The Persian Gulf Veterans

12 Coordinating Board was established by the President in

13 early '94 and is the Secretary of Defense, the

14 Secretary of Health and Human Services and the

15 Secretary of Veterans Affairs. So you would propose

16 a different body than -- I mean they have the

17 responsibility you were describing. So you think that

18 ought to be --

19 CHAIRPERSON LASHOF: Well, they had that

20 responsibility but we were asked to come in, in

21 addition to that group, even though that group was set

22 up. We think we played a role.

23 MS. GWIN: But you understand that the

24 NSTC is strictly governmental? It's not an advisory

25 committee that sits outside --


1 CHAIRPERSON LASHOF: No, but at least it's

2 outside the agency.

3 MS. GWIN: True.

4 CHAIRPERSON LASHOF: While the research

5 coordinating board, the Gulf Coordinating Board is the

6 three agencies that are involved. The Office of the

7 Assistant Secretary, OSTP, sits outside those agencies

8 and has therefore a somewhat more independent role and

9 could play a better oversight role, I believe, but I

10 think this is an issue for the Committee to discuss

11 and consider.

12 DR. CAPLAN: My only gripe about this is

13 I don't think it belongs here. I think it belongs in

14 the section of major recommendations up front of all

15 this.

16 MS. GWIN: We're not talking necessarily

17 about it's placement here. It's, I think, the notion

18 of --

19 CHAIRPERSON LASHOF: Where it goes -- we

20 can put it somewhere else, but it just hit me here

21 because of what's here. So where we put it in the

22 report is less important than whether we want it in

23 the report and what we want it to say, and whether we

24 feel that the current coordinating group is the one

25 that will follow up and see that whatever we have


1 suggested is implemented, and we'll keep on top of

2 this and keep running with it and whether we think

3 there's another group that needs to have that

4 responsibility.

5 DR. CAPLAN: Well, I would argue for

6 another group to have that responsibility, and I think

7 part of the issue is to whom it reports and then part

8 of it is what's its makeup. I think we might want to

9 not only worry about where it goes but who's got

10 representation on it in terms of implementation,

11 whether it's veterans' groups or others with expertise

12 in research and so forth. I don't think it should

13 just be the Persian Gulf Coordinating Board. That

14 would be my -- it shouldn't just be there.

15 MS. NISHIMI: What about the NSTC and

16 PCAST which is sort of how this recommendation is

17 couched?

18 CHAIRPERSON LASHOF: That would be okay

19 with me because PCAST also -- which is the President's

20 Committee on Advisors and Sciences and Technology --

21 does involve people who are not government employees.

22 It's an outside advisory group. So if the National

23 Science and Technology Council has the responsibility

24 of reviewing whether our recommendations are

25 implemented and keeping abreast of the research and


1 then turns to the President's Committee on Advisors on

2 Science and Technology as to further recommendations,

3 that would give us the governmental function over all

4 with an outside group that's already in place to

5 periodically look at these issues rather than look for

6 another committee.

7 MS. NISHIMI: And PCAST does meet in

8 public and Sunshine -- just so the Committee is aware

9 of that.

10 DR. KNOX: I guess the next question would

11 be do they have good risk communication?

12 CHAIRPERSON LASHOF: Well, I think after

13 this experience they would certainly be looking at it,

14 and at least there's one member of this Committee who

15 is also on PCAST. Dr. Hamburg is a member of this

16 Committee and is also a member of PCAST.

17 DR. KIDD TAYLOR: What about the other

18 expertise on the Committee, the PCAST Committee?

19 MS. NISHIMI: It's quite broad-based,

20 covering science and technology.

21 CHAIRPERSON LASHOF: Maybe for the next

22 meeting before we finalize you could get us a list of

23 the members of who the members of PCAST are, Robyn?

24 MS. NISHIMI: Sure.

25 CHAIRPERSON LASHOF: We could take a look


1 at this again.

2 DR. CAPLAN: What I'd like to know too for

3 the next meeting is what are the administrative or

4 bureaucratic placement options? It would be nice to

5 know what the -- I mean is it IOM, is it this, is it

6 what, freestanding but reporting to, etcetera,

7 etcetera. That would be interesting to know.

8 MS. NISHIMI: Okay.

9 MR. BROWN: You mean to develop some

10 options?

11 DR. CAPLAN: Yeah.

12 CHAIRPERSON LASHOF: Develop some options

13 for somebody, some group, not a person but group that

14 would have the ongoing responsibility to see that our

15 recommendations are implemented and to see that timely

16 action is taken in reviewing all of the research.

17 There is going to be too many unanswered questions

18 when we finish that will be answered over the next

19 year or so.

20 MR. BROWN: I just would like to add that

21 part of this recommendation is directed not so much at

22 Gulf War Veterans but at future --


24 think should stand as it is because -- and what I'm

25 talking about is another recommendation.


1 MR. BROWN: I see.

2 CHAIRPERSON LASHOF: This is for the

3 future, that we don't face this sort of thing again.

4 I think that is very important.

5 MS. NISHIMI: I think we know where to go

6 now.

7 MS. GWIN: Well, I don't exactly on the

8 options. Are you future oriented in your options or

9 do you want options for oversight as well?

10 DR. CAPLAN: The latter.


12 comfortable with this recommendation as far as future

13 orientation?

14 DR. KIDD TAYLOR: This is for future, but

15 it isn't necessarily just what happens to our

16 recommendation.

17 MS. NISHIMI: So this is just this

18 recommendation in the context of the background

19 material.

20 CHAIRPERSON LASHOF: Okay. We'll accept

21 this as it is. We will accept options and further

22 discussion on the other at the next meeting. Okay.

23 Very good. Moving along.

24 MS. NISHIMI: We have our last set of

25 staff briefings.


1 CHAIRPERSON LASHOF: You have another one.

2 MS. NISHIMI: This is a place holder just

3 to remind the Committee that in fact we do have a

4 research related type of recommendation in the context

5 of Kamisiyah -- something that Mr. Rios brought up

6 earlier, that will continue to undergo revision. If

7 there is any additional discussion, we'd be happy to

8 entertain it now.

9 DR. TURNER: This is a finding and

10 recommendation relative to Kamisiyah that came up at

11 our previous meeting that we just put there in case it

12 was an issue.

13 CHAIRPERSON LASHOF: To remind us that we

14 all have it, right. That will come up at the next

15 meeting as things evolve over the next month. Okay.

16 Now we're ready to move. I'm going to hold us up one

17 more minute as long as we're not doing too badly on

18 time. On the Table 1 -- I know I had some more

19 questions on the background material -- there are a

20 number of studies here that are stated to be finished

21 in '95 and then say ongoing or finished in September

22 '96 and ongoing. I didn't understand that. I don't

23 know how do we estimate they are finished and they are

24 ongoing, and when I looked at the next part where we

25 had results on those that were completed, some of


1 those weren't there. So --

2 DR. KIDD TAYLOR: The way I read it is

3 what the estimated finish date would have been, but

4 they are still ongoing. Right?

5 MR. BROWN: Well, I can answer something

6 like this. Different studies have different aspects

7 about them. For instance, some of the mortality

8 studies are listed as finished but they're ongoing --

9 they finished with a certain set of data but they are

10 following -- they will be ongoing, they'll go

11 essentially indefinitely. But that type of logic

12 doesn't apply to all these cases. I can't explain

13 some of them.

14 CHAIRPERSON LASHOF: I'm not nailing you

15 out here, Mark.

16 MR. BROWN: I should say this data comes

17 from a report from the research working group and from

18 the coordinating board to Congress, their most recent

19 report, and that's how they list it.

20 CHAIRPERSON LASHOF: See if you can

21 clarify it before we put out our final report because

22 I don't want to have to try to explain what estimated

23 finish date ongoing means until someone can tell me.

24 MR. BROWN: We'll work on that.

25 DR. CAPLAN: When Joyce does this, because


1 she's been a dean, but if I get a report from somebody

2 that says the research is done but ongoing, it usually

3 means somebody is trying to write it up -- I mean

4 write the paper or something. I'd like to know not

5 only is the research done or not, but it would be

6 useful to know paper submitted, paper abstract, what -

7 -

8 MR. BROWN: Well, what you get to, I

9 think, is a very important point -- who is this

10 research for and how is it being communicated to those

11 target audiences, through papers or lay audience or

12 for a technical audience. We have not tried to do

13 that analysis.

14 DR. CAPLAN: Briefing schedule.

15 MR. BROWN: Okay. Kelly just reminded

16 that we have collected that information about types of

17 products, so maybe we should include that in this

18 table.

19 MR. CROSS: In my mind, ongoing means that

20 the funding hasn't dried up yet. There is still more

21 money there to spend. But let me say this that you

22 can put another column on here and say, "Well, should

23 the study be continued? Should we fund it into the

24 future because they still need more additional

25 information before they make their final --"


1 MR. BROWN: Okay. We'll investigate this

2 issue.

3 CHAIRPERSON LASHOF: Okay. Thank you very

4 much. We'll take five minutes stretch in place while

5 we rearrange.

6 (Whereupon a short recess was held.)

7 CHAIRPERSON LASHOF: We're ready to go to

8 tab E which is fairly extensive and has several parts

9 to it. We're going with a new cast of characters, or

10 the same rearranged -- prearranged seats. Okay. All

11 right. We're going to move to something called Data,

12 but I think it's much more extensive than Data on tab

13 E.

14 MS. GWIN: What we tried to do here was

15 pull together all the data that is available from the

16 clinical studies, the data that's available from the

17 completed epidemiologic studies, and then reach a

18 combined set of findings and recommendations that

19 apply to the combined data set. So Dr. Brix will

20 present on the data from the clinical programs, Dr.

21 Joellenbeck will present on the data from the

22 completed epidemiologic studies, and Dr. Cassells will

23 present the findings and recommendations. It's up to

24 you whether you want to do background questions after

25 Kelly's and after Lois' or save it all for the end.


1 CHAIRPERSON LASHOF: I think it best to do

2 the discussion on background after each separately and

3 then deal with findings and recommendations after we

4 have discussed -- I can't remember stuff that long.

5 Go ahead, Kelly.

6 DR. BRIX: Today I would like to summarize

7 the results of the medical evaluations of Gulf War

8 veterans. I'll be using slides that correspond to the

9 tables that are attached to the data memo -- clinical

10 data memo that you have in your briefing books, so you

11 might want to pull that out and follow along.

12 There are four main topics. First, an

13 overview of the results of the VA Registry and the

14 CCEP, then details on stress-related disorders and

15 psychological conditions in both registries, then a

16 characteristic of undiagnosed illnesses in both

17 registries, then a summary of illnesses diagnosed in

18 spouses and children in CCEP.

19 In your briefing books there is also a

20 summary about the preliminary results of the medical

21 evaluations of Gulf War veterans in Great Britain and

22 Canada which I will not be covering today. May I have

23 the first table, please?

24 As you can see, this corresponds to Table

25 1 in your briefing book. As of August 1996 more than


1 60,000 individuals had requested an exam in the VA

2 Registry and the results for the first 52,216 veterans

3 have been summarized. For the CCEP more than 21,000

4 individuals had requested an exam in the CCEP as of

5 April 1996. The results for the first 18,075 military

6 personnel have been evaluated and are summarized here.

7 Information for 332 spouses and 191 children of active

8 duty service personnel are also briefly described.

9 Information derived from these data sets

10 have clinical utility and are being used by DOD and VA

11 to address several concerns from a descriptive

12 perspective. In addition, these data have provided

13 guidance in formulating a number of research

14 questions, however results from analyzing both VA's

15 registry and DOD CCEP, which are two self-selected

16 case series, can not be generalized for the entire

17 population of Gulf War veterans. As Lois will

18 describe later, generalizing mileage is one of the

19 expected outcomes of the epidemiological research that

20 is currently in progress.

21 If you look at Table 1 you will see that

22 in terms of characteristics such as age, race, sex,

23 branch of service, disciplines in the two registries

24 represent a broad cross-section of service members who

25 deployed to the Gulf War, however army personnel,


1 women and older individuals, which means over the age

2 of 26 years in 1990, are over-represented in these two

3 data bases. In addition, in the VA registry, Reserve

4 and National Guard personnel are over-represented as

5 well.

6 Now, let's turn to Table 2.

7 CHAIRPERSON LASHOF: Pardon me a minute,

8 Kelly. Let me ask the Committee whether any of them

9 shared my feeling, which usually carries weight, that

10 maybe we might take questions as we go -- as you go

11 through tables if there are questions about the data

12 we might try to ask them then. It will be easier for

13 me, I think, and it might be better.

14 DR. BRIX: Sure.

15 CHAIRPERSON LASHOF: This table, the one

16 question that came to my mind was that we know the

17 total number that participated in the Gulf and we've

18 got the numbers for each of the two different

19 registries. What percentage of those that served in

20 the Gulf are still on active duty and would be

21 eligible for CCEP and what percentage have been

22 discharged and would have appeared in the VA Registry?

23 DR. BRIX: The last number that I heard is

24 some time in the last several months that about almost

25 500,000 of the 700,000 are no longer on active duty,


1 but I don't have that exact number. I will have to

2 find that out for you. As you can well imagine, this

3 number has changed every month for several years. The

4 VA Registry started in 1992 and the CCEP started in

5 the middle of 1994, so in the middle of 1994 when it

6 started, a much higher fraction was still on active

7 duty at that time.

8 DR. KIDD TAYLOR: You said almost 500,000

9 are now --

10 DR. BRIX: Are no longer on active duty

11 now. That is my most recent understanding, but I will

12 check on that.

13 CHAIRPERSON LASHOF: I guess what I was

14 trying to calculate in my own mind, the number

15 represented in the two registries is about ten percent

16 of the total --

17 DR. BRIX: Right.

18 CHAIRPERSON LASHOF: And whether it's ten

19 percent of those on active duty and ten percent of

20 those discharged, or whether it's a higher percentage

21 of one or the other was a question in my mind. The

22 other was are they still registering a significant

23 number? Has it peaked? Have we hit probably as many

24 as we're going to hit under the two registries? Do

25 you have any sense on that?


1 DR. BRIX: There was a much higher number

2 per month that were registering for both of these

3 programs earlier on than there is now. It is slowing

4 down, but I certainly wouldn't say that it has reached

5 a standstill. When Dr. Cassells and I did our site

6 visits at several locations they were still actively

7 enrolling people, but at a slower rate.


9 DR. KNOX: Can I ask a question?


11 DR. KNOX: I would be interested in

12 knowing how many veterans were still on active duty

13 and in the Guard and Reserves when the CCEP and the

14 Registry exam began, because most of the downsizing

15 had already occurred and people who were ill and

16 didn't pass their PT test or whatever were already put

17 out before this was even begun. I think we've missed

18 some of them because of that.

19 DR. BRIX: I'll try and find that out for

20 you.

21 MR. RIOS: Let me ask you in terms of --

22 I notice you have there on Hispanics that the

23 information is not available. Are you going to get

24 that, and number two, do you have any idea what the

25 number is, and also why is it unavailable at this


1 time?

2 DR. BRIX: I was relying on published

3 sources and I can -- again, I'll try and find that out

4 for you. That has not been published, so I'm not sure

5 if it's available or not.

6 MR. CROSS: This is just a general

7 comment. Since I've been on the Committee it still

8 boggles my mind while folks won't register or get

9 themselves registered -- why they keep waiting --

10 52,000 is just a fraction of the total number. It

11 still amazes me the number of people who won't

12 register and get on the program. Maybe with the

13 additional recent news articles and on TV and

14 everything, maybe we'll get an influx of people that

15 say it's probably not a bad idea to get the name --

16 DR. BRIX: It was --

17 MR. CROSS: On the data base.

18 DR. BRIX: I'm sorry. I didn't mean to

19 interrupt you. It was our experience when we went on

20 our site visits that the medical personnel said that

21 usually they noticed an influx when there would be a

22 lot of media coverage about something. They would

23 promptly see a peak of people coming in, so maybe

24 you're right.

25 MR. CROSS; When we started the Committee


1 it was 50,000 and now there's 52,000. There's been an

2 increase of 2,000, is that correct?

3 DR. BRIX: No. What I'm reporting on is

4 the number for which we have the medical information

5 on. More than that have enrolled and more than that

6 have been through the examination, but this is the

7 number for which all of the data has been computerized

8 and it's been reported.

9 MR. CROSS: Okay. Fine. Go ahead.

10 DR. BRIX: Okay. Could we please turn to

11 Table 2? I'd like to turn to the topic of symptoms.

12 The 18,075 disciplines in the CCEP report a broad

13 range of symptoms that span a variety of organ

14 systems. The most common primary symptoms reported,

15 as you can see, are joint pain, fatigue, headache,

16 rash and memory loss. Ten percent of the people in

17 the CCEP are asymptomatic -- they have no symptoms.

18 The ten most frequent symptoms seen in the CCEP are

19 also common in the general adult population.

20 Also you can see on Table 2 the most

21 common symptoms reported by people in the VA Registry.

22 The most common symptoms reported in the VA Registry

23 are also very similar to the most common symptoms in

24 the CCEP. In the VA Registry 12 percent of the

25 individuals are asymptomatic.


1 Can we please go to Table 3? This table

2 summarizes the diagnoses for the two registries. In

3 the first 18,075 CCEP participants you can see the

4 major diagnostic categories in this table. The most

5 prevalent primary diagnosed categories are

6 psychological conditions at 18.4 percent, muscular-

7 skeletal system diseases at 18.3 percent, an ill-

8 defined group called symptoms, signs and ill-defined

9 conditions at 17.9 percent, and healthy 9.7 percent.

10 Beyond those four categories, the primary diagnoses do

11 not appear to concentrate in any single organ system.

12 Also on Table 3, the same table you are

13 looking at now, the most important diagnoses are

14 computerized for the VA Registry. You can see that

15 the top three are the same as for the CCEP --

16 psychological conditions at 15.1 percent, muscular-

17 skeletal diseases at 25.3 percent and symptoms, signs

18 and ill-defined conditions at 19.9 percent. 7.8

19 percent of the people in the VA Registry are healthy.

20 Now let's stay on Table 3 and I'm going to

21 discuss the three most prevalent categories of

22 diseases in the two registries in a little bit more

23 detail starting with muscular-skeletal diseases, which

24 as you can see is the -- one of the most common in

25 both registries.


1 In the CCEP it accounted for 18 percent of

2 primary diagnoses, and 47 percent of the people in the

3 CCEP had either a primary diagnosis in muscular-

4 skeletal system or a secondary diagnosis. More than

5 50 percent of these problems are included in three

6 different diagnoses, which include joint pain,

7 osteoarthritis and backache. The DOD reported that

8 the occurrence of muscular-skeletal disease is higher

9 than the rate in the general population of the same

10 age group. Specifically, the rate of muscular-

11 skeletal problems is about two times higher and about

12 three times higher in women in the CCEP than you would

13 see in the general population. Whether this rate of

14 muscular-skeletal problems for CCEP participants

15 differs from the frequency in the general military

16 population is not known, and this is due to the

17 paucity of baseline information on the health status

18 of service members.

19 Military personnel must maintain certain

20 levels of physical fitness and many are required to

21 participate in demanding physical training programs

22 and these can place considerable stress on joints and

23 muscles. DOD has reported that the majority of these

24 muscular-skeletal problems diagnosed in CCEP

25 participants are wear and tear disorders such as


1 recurrent strains, sprains and degenerative arthritis

2 due to trauma on a joint, that to be expected in a

3 physically active population.

4 Also on the same table you see the

5 muscular-skeletal problems in the VA Registry

6 participants, which are 25.3 percent and the most

7 prevalent problem of all the diagnostic categories.

8 Again, in the VA Registry the commonest muscular-

9 skeletal problems were joint pain and low back pain.

10 Now I'd like to turn to Table 5 if there

11 are no questions on Table 3. I'd like to summarize

12 the clinical data now on stress related disorders in

13 Gulf War veterans. Physicians have observed in many

14 previous wars that physical and psychological stress

15 can lead to the development of higher rates of

16 psychiatric illnesses than are observed in the general

17 population. Post-traumatic Stress Disorder, or PTSD,

18 and depression, are particularly prevalent problems in

19 combat veterans. As might be expected from

20 experiences in previous wars and other traumatic

21 events such as sexual assault, some Gulf War veterans

22 have expressed symptoms that frequently can be

23 manifestations of psychological stress. These include

24 physical symptoms such as fatigue, headaches, loss of

25 appetite and sleep problems, and cognitive


1 difficulties such as memory problems and difficulty in

2 concentration.

3 If you look at the table, you can see that

4 there are a number of psychological conditions that

5 are common among CCED participants, and these include

6 major depressive disorder, neurotic depression which

7 is also called Dysthymia, PTSD, anxiety disorders,

8 adjustment disorders and alcohol and substance related

9 disorders.

10 Also on the same table you can see that

11 amongst the 52,000 participants in the VA Registry

12 there were a number of common psychological problems

13 which included depression, PTSD and anxiety disorders.

14 In addition to these out-patients that are summarized

15 on this table, more than 15,000 Gulf War veterans had

16 been admitted for treatment to a VA hospital by

17 September 1995 and psychological conditions were the

18 most common diagnostic category for these in-patients

19 in 43 percent of their total diagnoses, and the most

20 common problems that they had included PTSD and

21 adjustment disorders and alcohol and drug dependance.

22 The types of psychological problems that

23 are diagnosed amongst Gulf War veterans are also

24 common in the general population. The best estimates

25 of the prevalence of psychiatric disorders in the


1 general population are based on something called the

2 National Comobidity Survey, which is a comprehensive

3 survey of over 8,000 adults nation-wide aged 15 to 54

4 years. In this national survey there were a number of

5 psychological problems that were fairly common. These

6 included major depressive disorder, Dysthymia, anxiety

7 disorder, alcohol and substance related disorder and

8 PTSD. As you can see from this list, this is a

9 similar list to the types of psychological problems

10 that are fairly common in the Gulf War veterans as

11 well.

12 Now I'd like to turn to some symptoms that

13 are associated with stress. Cognitive difficulties

14 are commonly reported by Gulf War veterans. These

15 symptoms can be caused by psychological distress which

16 is associated with diseases like PTSD and major

17 depression. For the CCEP, 34 percent of participants

18 reported memory loss and 27 percent reported

19 difficulty concentrating. Fourteen percent of

20 Registry patients reported memory loss. So memory

21 loss is common to both registries.

22 To date, only a few CCED participants have

23 demonstrated cognitive deficits when they have

24 undergone structured neuropsychological testing. This

25 type of structured testing has ruled out an underlying


1 neurologic ideology for most of the reported memory

2 problems. As a matter of fact, organic brain syndrome

3 is the primary diagnosis in 0.6 percent of CCED

4 participants. This is a generic medical term for

5 brain damage due to several diseases such as head

6 trauma or Alzeheimer's Disease. So fortunately these

7 kinds of cognitive problems are rare in this group

8 over all.

9 Now I'd like to see Table 6, please. The

10 major symptoms or diagnostic criteria of common

11 psychiatric conditions overlap with some of the

12 symptoms that are frequently reported by Gulf War

13 veterans. We've talked about some of the common

14 problems such as major depression, PTSD and anxiety

15 disorder. On Table 6 you can see the diagnostic

16 criteria for major depression, and as you can see,

17 there is considerable overlap between the symptoms for

18 major depression and some of the symptoms which are

19 frequently reported by CCEP participants which have

20 been summarized earlier on Table 2.

21 The ones that overlap include criteria

22 one, depression. Criteria three, weight loss.

23 Criteria four, sleep disturbance. Criteria six,

24 fatigue. Criteria seven, memory loss. And criteria

25 eight, difficulty concentrating. So there is a great


1 deal of overlap.

2 If there are no questions, I would like to

3 continue on to Table 7 which summarizes the

4 undiagnosed illnesses. These are called symptoms,

5 signs and ill-defined conditions in the CCEP. They

6 are the primary diagnostic category for 18 percent of

7 participants in the CCEP.

8 This category includes an extremely

9 heterogeneous group of miscellaneous symptoms that do

10 not fit anywhere else in the coding system. As you

11 can see, this group includes generalized symptoms such

12 as malaise and fatigue, isolated abnormal laboratory

13 results such as a non-specific reaction to the

14 Tuberculin test, and symptoms that are transient, such

15 as an episode of seizures or a rash by history only.

16 In general, no significant anatomical,

17 physiological, biochemical or pathological

18 abnormalities are detectable in individuals whose

19 symptoms were in this code group. DOD has reported

20 the frequency of symptoms in this code group for CCEP

21 participants is about 5 times higher than the

22 frequency of coding in this group in the general US

23 population in that same age group.

24 Now I'd like you to turn to Table 8, which

25 includes very similar data as in the VA Registry. In


1 the VA Registry 10,391 individuals, or about 20

2 percent of the total, reported some symptoms but they

3 did not have a characteristic set of signs and

4 laboratory test abnormalities but a lot of medical

5 diagnoses to be made.

6 This group of registered participants is

7 comparable to the group of CCEP people who we just

8 talked about a moment ago that have the primary

9 diagnosis of symptoms, signs and ill-defined

10 conditions. As you can see, the list of symptoms is

11 similar as well.

12 If there are no questions about this, then

13 I would like to go to my final topic, which is

14 illnesses diagnosed in spouses and children in the

15 CCEP. Let's turn to --

16 CHAIRPERSON LASHOF: Before you do, there

17 is one question I have on all of the data and all of

18 the comparisons you've given to quote general

19 population. You reference two populations, I think in

20 here, one being the National Ambulatory Care Survey

21 and the other being the National Comorbidity Survey.

22 Can you tell me the difference between those samples?

23 The National Ambulatory Care is a cross-section of a

24 general population, is it not, not those appearing for

25 illness or clinic -- just the general population?


1 DR. BRIX: Well, the National Ambulatory

2 Care Survey was done in an outpatient setting. It was

3 people who were seeking care at a primary care

4 practitioner's office, and that was a national survey.


6 DR. BRIX: The National Comorbidity Survey

7 was not looking at every type of disease as the other

8 one was. It was only looking at psychological

9 conditions and it was not clinically based. It was

10 population based. It was a survey of over 8,000

11 adults that underwent long detailed questionnaires,

12 telephone questionnaires, and some of them were

13 visited at home as well, so this was population based.


15 DR. BRIX: I'm sorry? Yes, it was

16 population based and it was nation-wide.

17 CHAIRPERSON LASHOF: A random sample of

18 the population?

19 DR. BRIX: Exactly. Yes.

20 CHAIRPERSON LASHOF: Not presenting for

21 anything?

22 DR. BRIX: Exactly. They looked at adults

23 15 to 54, and as I say there was standardization of

24 instruments, and it's the best data that we have

25 currently available on psychological conditions in the


1 general population. It was published in 1994-95.

2 CHAIRPERSON LASHOF: And when you refer in

3 your text to the general population, you're referring

4 to the National Ambulatory Care Survey, is that

5 correct, and you're referring to the National

6 Comorbidity only when you're looking at comparing

7 psychiatrics?

8 DR. BRIX: Yes. That's right.


10 symptoms and ill-defined conditions comparison of five

11 times as much among this group --

12 DR. BRIX: Is the National Ambulatory

13 Care.

14 CHAIRPERSON LASHOF: Is compared to the

15 National Ambulatory Care, and that was matched for

16 age, sex, and they were all seeking care?

17 DR. BRIX: Yes. Uh-huh.

18 CHAIRPERSON LASHOF: As a clinician

19 yourself and Joe, could you tell me how consistent

20 would it be for clinicians to categorize somebody in

21 the signs, symptoms and ill-defined conditions versus

22 having put them into chronic fatigue or muscular-

23 skeletal or --

24 DR. BRIX: Could you be a little more

25 clear on your question? I'm sorry.


1 CHAIRPERSON LASHOF: Well, what I'm saying

2 is that if somebody presents with joint pains, muscle

3 aches, fatigue, one physician may call that chronic

4 fatigue. One physician might list them as muscular-

5 skeletal, joint pain, backache, and another physician

6 might list them as signs, symptoms and ill-defined

7 conditions. Do you know whether there was any

8 standardization in the diagnoses in these two

9 registries, or could we have a potpourri and throw all

10 those together and end up with stew?

11 DR. BRIX: Well, I can speak specifically

12 about a couple of things that you mentioned. The

13 chronic fatigue syndrome, for example, both DOD and VA

14 physicians have been educated as to the CDC criteria

15 for that and have been advised to only use that

16 particular diagnostic term if the person does indeed

17 meet the diagnostic criteria for that.

18 In general, if someone comes out in this

19 category as fatigue, they may or may not have long-

20 term fatigue, but they probably do not meet the actual

21 chronic fatigue syndrome criteria. This is sort of a

22 catch-all term. Likewise, if someone came with a main

23 presentation of joint pain and they headed for a

24 workup and they were shown to have osteoarthritis or

25 rheumatoid arthritis of the left knee, it would


1 probably be coded as that as opposed to strictly joint

2 pain with no other kind of description to it. So this

3 is sort of a miscellaneous group.

4 CHAIRPERSON LASHOF: Well, those I can

5 see. I mean clearly if you make a diagnosis of

6 osteoarthritis or rheumatoid arthritis those are

7 relatively clear-cut diagnoses, but if you end up with

8 a diagnosis of joint pain one doctor may call it joint

9 pain and another may categorize it under the ICD code

10 for symptoms, signs and ill-defined conditions. So

11 I'm trying to get a sense of what, if anything, I can

12 draw from the fact that the signs, symptoms and ill-

13 defined conditions are somewhat higher in CCEP than VA

14 or vice-versa, whichever it was, and as compared to

15 the general population whether this is meaningful or

16 whether this is a reflection of how one group of

17 doctors will diagnose similar conditions. Any

18 insights? Joe?

19 DR. CASSELLS: That's a very hard question

20 because we don't know the elements of -- even if you

21 have a standardized definition that you give to the

22 people who are conducting the survey, you're not

23 always sure that they follow the -- as we've had with

24 all the other stuff -- relative to policy versus

25 implementation, whether in fact that stand was


1 strictly adhered to. I'm certain that in both

2 instances that very likely there were deviations from

3 whatever set standard there might have been. How you

4 get rid of this ambiguity or uncertainty I'm not sure.

5 We're looking back retrospectively. But I believe

6 that the figure in the CCEP that indicate that it is

7 5 times higher than the background noise, if you will,

8 within the population is probably significant.

9 DR. BRIX: I think that one thing we can

10 say is that the VA and DOD positions are encouraged to

11 do a thorough examination. This is not intended to be

12 a 10 minute exam that you would get in a primary care

13 office if you came in for a headache. This is

14 supposed to be much more comprehensive and more

15 thorough. So if the person had overt abnormalities on

16 their physical exam or overt abnormalities on their

17 blood test and urine tests that should have showed up

18 during that exam, so this is sort of a residual for

19 people who have symptoms but don't have a connected

20 physical abnormality or lab test abnormality.

21 CHAIRPERSON LASHOF: I guess I'm just a

22 little concerned whether the muscular-skeletal, and

23 many of them that fell under that muscular-skeletal

24 diagnosis, could have also fallen under signs,

25 symptoms and ill-defined conditions if they didn't


1 have clear-cut rheumatoid or osteo? I guess partly

2 what I'm struggling with is whether we can get any

3 more insights out of these two registries as to the

4 percentage of the population that were being seen --

5 there is no clear-cut ideology more important than

6 which of these diagnostic categories they fall into.

7 DR. BRIX: I think that the best way to

8 try to answer your question -- the question that you

9 just asked is not going to be trying to mine these

10 data bases much more. I think that we'll get a much

11 more clear-cut answer when we get the results for the

12 VA national survey, which not only has an interview

13 for the 30,000 participants but it also has detailed

14 medical record review, and indeed even calling people

15 in for exams and lab tests. So I think that if we

16 have a randomly chosen group like that where we have

17 questionnaire data and exams and lab tests and we can

18 look at the patterns of people who have symptoms but

19 do not have the abnormalities on lab tests and try to

20 have a better understanding of that, I think that's

21 the best way to approach this.

22 CHAIRPERSON LASHOF: I think that's quite

23 correct, and maybe we shouldn't really even try to

24 mine this at all.

25 DR. CASSELLS: It is, however, an issue of


1 -- a very important question because this is the set

2 of the population that we are talking about here, the

3 Gulf War veterans with their illnesses that fall into

4 that undiagnosed category and aren't covered by the

5 compensation law specifically. So that national

6 survey will be very useful for us.

7 CHAIRPERSON LASHOF: Yeah. Okay. Thanks.

8 DR. BRIX: I'd like to just finish up very

9 briefly. Let's take a look at Table 9 which mentions

10 illnesses diagnosed in spouses and children in CCEP.

11 Since its inception in 1994 spouses and children of

12 active duty military personnel have been eligible for

13 the CCEP. DOD has recently reported their results

14 with evaluation of 332 spouses and 191 children.

15 In addition, VA began a similar program

16 for spouses and children in April of '96. As of

17 August '96 about 800-850 individuals had enrolled in

18 the VA program but the clinical results are not yet

19 available.

20 In Table 9 you can see the frequency of

21 the primary diagnoses and all diagnoses in the 332

22 spouses. Overall, the distribution of diagnoses in

23 the 332 spouses is similar to the distribution of the

24 diagnoses in the 18,000 active duty personnel. The

25 most prevalent major diagnostic categories are


1 psychological conditions, muscular-skeletal diseases

2 and symptoms, signs and ill-defined conditions.

3 Now look at Table 10, which provides the

4 frequency of primary diagnoses in 191 children in the

5 CCEP. As you can see, 72 of the children or 38

6 percent are healthy, 35 children were born with

7 various congenital abnormalities that were not

8 concentrated in a single organ system. The remaining

9 children had either skin problems or a number of

10 diseases in many different organ systems.

11 Now I'd like to take any other questions

12 you have about either the spouses and children, or any

13 other part.

14 CHAIRPERSON LASHOF: No questions? That's

15 fine. Okay. Lois, do you want to proceed on then

16 with the federally funded epidemiologic research?

17 DR. JOELLENBECK: As was observed this

18 morning, epidemiologic studies are crucial for better

19 understanding Gulf War veterans' illnesses in a large

20 population that will include people who are

21 experiencing a variety of different illnesses. While

22 the clinical programs just described provide valuable

23 information about illnesses which a self-selected

24 group of Gulf War veterans are experiencing, they can

25 not provide answers to whether and how rates of


1 illnesses or death in the whole Gulf War veteran

2 population are different from those in any similar

3 large population.

4 This information can better focus effort

5 toward the most useful intervention or treatment for

6 the veterans. Unfortunately, carefully designed

7 epidemiologic studies are time-consuming and many were

8 not begun until several years after the Gulf War, so

9 many important studies addressing the epidemiology of

10 Gulf War illnesses are still underway or have not yet

11 made results publicly available.

12 For example, the VA's national health

13 survey, the health assessment of Persian Gulf war

14 veterans from Ohio, and several epidemiologic studies

15 based at the VA Environmental Hazards Research Centers

16 have not yet made results public.

17 I will be briefly reviewing data from

18 completed epidemiology studies in which the results

19 have been published or publicly released in

20 preliminary form. These include studies of mortality,

21 general health outcomes, psychiatric effects and birth

22 defects.

23 First, results of studies of mortality in

24 the veterans. Next one -- thanks. Two epidemiologic

25 studies have been completed on service member deaths


1 which occurred during the period of the Gulf War.

2 When rates for various causes of death were compared

3 to those deployed elsewhere, excess unintentional

4 injury deaths such as from motor vehicle and aircraft

5 accidents were observed in Gulf campaign participants.

6 The studies did not find unusual deaths from natural

7 or unexpected causes.

8 A thorough study of mortality in Gulf War

9 veterans and a comparison population since the war has

10 been conducted by VA's Environmental Epidemiology

11 Service. Mortality in all people who served in

12 Operations Desert Shield and Desert Storm compared to

13 that in air veterans matched the study subjects by

14 branch and unit status. Careful ascertainment of

15 deaths and causes of death to the end of September

16 1993 was carried out, and during this time 1765 deaths

17 occurred among Gulf War veterans and 1729 deaths

18 occurred among the air veterans who were sampled.

19 The preliminary results indicate that Gulf

20 veterans had a significant excess of deaths compared

21 to air veterans deployed elsewhere, as a result

22 primarily of external causes such as accidents. Among

23 active duty Gulf War veterans, the mortality rate is

24 15 percent higher than in active duty veterans from

25 the same era. Most of the excess mortality came from


1 external causes such as motor vehicle and other

2 accidents, while rates for natural causes such as

3 infectious diseases, cancers and other diseases, were

4 lower in the Gulf veterans.

5 Next slide, please. The studies described

6 above indicate no excessive deaths from natural causes

7 during either Operation Desert Shield, Desert Storm or

8 in the two years which followed. Death rates from all

9 illnesses, including infectious diseases and cancers,

10 have been lower in the population deployed to the Gulf

11 than those deployed elsewhere. Death rates from

12 external causes have been elevated.

13 Elevated mortality from external causes,

14 particularly from motor vehicle accidents, is

15 consistent with trends observed in other populations

16 of the war veterans. Several studies of mortality in

17 Vietnam veterans have shown an increased mortality

18 rate from external causes such as accidents.

19 Epidemiologic studies have been directed

20 at illnesses in Gulf War veterans as well as

21 mortality. The best studies in which to address

22 whether Gulf War veterans and their family members are

23 experiencing health problems more frequently than a

24 comparison population are population based, meaning

25 they draw information from samples representative of


1 the entire population of interest. At this time there

2 remains a lack of information from population based

3 studies designed to address whether and how rates of

4 illnesses differ between Gulf deployed and non-

5 deployed populations, but some data are emerging.

6 Next slide, please. The studies

7 undertaken most quickly after reports of illnesses in

8 Gulf War veterans surfaced were investigations of

9 clusters of reported illnesses or analysis of computer

10 data bases of components of the Gulf veteran

11 population. Two early studies, which could be

12 considered cluster investigations, were carried out in

13 groups of reservists in which health complaints had

14 been reported. One in the 123rd Army Reserve Command

15 at Fort Benjamin Harrison, Indiana, the other in

16 divisions of the 24th Naval Mobile Construction

17 Battalion. Both studies reported high levels of

18 symptoms in the study participants but the absence of

19 unusual patterns or frequencies of physical findings

20 or diagnosed illnesses. Both groups were self-

21 selected, and therefore the results can not be

22 generalized to the larger reserve or Gulf War

23 population.

24 The Center for Disease Control and

25 Prevention of Infectious Disease Center has carried


1 out a study of illnesses reported among Gulf War

2 veterans in the Pennsylvania Air National Guard Unit.

3 This three stage study began in late 1994 as a rapid

4 response to reports of an outbreak of illnesses in the

5 unit, and at this point findings from the first two

6 phases have been published or presented publicly. The

7 first two stages of the study verify the presence of

8 multiple symptoms and characterize a lack of

9 consistent objective clinical findings in physical

10 exams. They also establish that in the populations

11 investigated, the prevalence of multiple symptoms was

12 higher in deployed personnel.

13 Findings from the survey were used to

14 develop an operational case definition for use in the

15 final phase of the study. The case definition

16 featured chronic symptoms of fatigue, mood incognition

17 and muscular-skeletal problems. It was similar to

18 that for Chronic Fatigue Syndrome but lacked a

19 requirement of severity of symptoms.

20 Criteria for the case, as defined for the

21 purposes of this study, were met in 45 percent of the

22 surveyed veterans who were deployed to the Gulf, but

23 were also met in 15 percent of the non-deployed

24 veteran respondents and in 12 percent of a San

25 Francisco civilian population surveyed, suggesting


1 that the causes of the problems as captured in this

2 case definition are not unique to Gulf War service.

3 No association of symptoms was seen with where in the

4 Gulf the respondents served, the number of

5 deployments, or the timing of deployment during

6 Operations Desert Storm and Desert Shield.

7 The final stage of this study explored

8 associations between having the symptoms defined in

9 the study as being a case and selected infectious,

10 behavioral and environmental risk factors for

11 developing illness. A voluntary subset of the index

12 unit, which was less than half of the unit members who

13 were deployed to the Gulf, were administered thorough

14 physical exams, laboratory analyses of blood, urine

15 and stool samples, and instruments to evaluate

16 extensive disability and psychiatric status. Exposure

17 data was gathered from self report. Serologic

18 evidence of exposure to a wide array of known

19 infectious agents was low, with no differences between

20 cases and controls. No physical or laboratory

21 abnormalities were associated with being defined as a

22 case.

23 Despite the absence of physical findings,

24 veterans who fit the definition of a severe case had

25 measurable deficits in reported functioning. Veterans


1 in this group also were more likely to meet screening

2 levels for PTSD on the Mississippi scale. Data from

3 the study stage are still preliminary and undergoing

4 additional analyses.

5 Because the study relied upon volunteers,

6 who are a minority of the target population, there is

7 potential for bias in these findings. Furthermore,

8 the generalized ability of the findings of the study

9 to the whole Gulf War veteran population is limited in

10 that study subjects were all members of the Air

11 National Guard or Air Force and were not chosen to

12 reflect the makeup of the larger population.

13 Preliminary data from an exploratory study

14 of hospitalizations in active duty Military personnel

15 were presented to the Committee in November of '95.

16 The only differences in hospitalization rates observed

17 between active duty personnel who had been deployed to

18 the Gulf and those non-deployed were that the deployed

19 experienced more hospitalizations with mental disorder

20 or genital urinary diagnoses.

21 Results of cognitive testing of four

22 populations of Gulf War veterans have been published

23 or presented at national medical conferences.

24 Although these four studies were small, groups of Gulf

25 War veterans ranging in size from 19 to 149 people,


1 several consistent findings emerged. On objective

2 testing, memory and concentration performances were

3 the same or only slightly decreased in groups of Gulf

4 War veterans compared to controlled participants.

5 Perceptions of memory disfunction, however, were

6 greater among the groups of Gulf War veterans. A

7 small minority of Gulf War veterans, who were

8 significantly distressed due to PTSD or other

9 psychiatric diseases, did have objective memory and

10 concentration impairment. These data are preliminary

11 and require replication and additional studies.

12 Next slide. The morbidity study

13 summarized in this section provides suggestive

14 information about selected populations of Gulf War

15 veterans. These studies show an increase in symptoms

16 such as fatigue, joint pain, memory problems and

17 headaches in individuals who were deployed to the

18 Gulf. The study results, however, do not indicate

19 consistent abnormal laboratory or physical findings in

20 these groups. Until results from some of the larger

21 population based epidemiologic studies become

22 available, few conclusions can be generalized from

23 these studies regarding the nature and extent of

24 illnesses in the Gulf War veteran population as a

25 whole.


1 May I have the next slide? Thank you.

2 Research targeted to increase knowledge about the

3 effects of stress on Gulf War veterans has involved

4 several large-scale efforts, as well as examinations

5 of discrete populations of certain veterans who

6 performed specific duties or were subjected to

7 specific events during Operations Desert Shield and

8 Desert Storm. I will first review results from

9 several large studies.

10 One of the earlier studies to collect

11 information on acute war stress and readjustment in

12 Gulf War veterans has been carried out by the Boston

13 VA Medical Center. It's called the Fort Devens Study

14 and the investigation has followed about 2,300 Gulf

15 veterans from Fort Devens since 1991. It periodically

16 evaluates their psychiatric status. The analysis done

17 thus far indicated an increase in symptoms of PTSD 18

18 to 20 months after their return home, followed by a

19 decrease in these symptoms when assessed two years

20 later. At both the initial and second evaluations

21 women reported more PTSD symptoms than men. Overall,

22 rates of PTSD in the sample have ranged from 4 to 15

23 percent at different time points. Rates of general

24 psychological distress and several physical symptoms

25 were highly correlated with symptoms of PTSD.


1 Reported stress levels increased over time, as was

2 also observed in the New Orleans and West Haven

3 studies that I will describe.

4 Researchers of the New Orleans VA Medical

5 Center evaluated a sample of 1,500 National Guard and

6 Reserve troops. The first assessment took place

7 within a few months after the war, and included

8 personal characteristics and resources, nature and

9 severity of stressors, negative mood states,

10 psychiatric and physical symptoms, and PTSD symptoms.

11 Compared to non-deployed troops, individuals from

12 deployed units reported more physical symptoms and had

13 more negative mood states, including depression, anger

14 and anxiety. The two groups differed in prevalence of

15 reported headaches, general aches and pains, lack of

16 energy and sleep disturbance. Twenty-three percent of

17 war zone deployed troops reported at least mild levels

18 of clinical depression, while 14 percent reported

19 clinically significant levels of PTSD. Individuals

20 diagnosed with PTSD also displayed less proficient

21 cognitive performances in neuropsychological

22 functioning pertaining mostly to attention and new

23 learning.

24 Another study was carried out at the

25 Walter Reed Institute of Research in response to a


1 congressional mandate requesting them to investigate

2 the effects of the Gulf War on the health and

3 readjustment of military personnel from Pennsylvania

4 and Hawaii. In response, Walter Reed performed a

5 research survey in military populations in these

6 states to identify any sub-populations demonstrating

7 higher than usual levels of psychological symptoms and

8 to analyze probable risk factors. Subjects included

9 active duty and Reserve personnel assigned to all

10 Army, Navy, Air Force and Marine units in Pennsylvania

11 and Hawaii. Approximately 14,000 questionnaires were

12 distributed to these units in mid-1993 and surveys

13 were returned from roughly 31 percent. Regrettably,

14 the response rate is too low to extrapolate results

15 from this study to the overall Gulf War veterans'

16 population. This study was the only published study

17 that includes such a large sample of active duty

18 troops.

19 Veterans in the study who were deployed to

20 the Gulf War experienced significant levels of stress.

21 Some observed dead and wounded, and anxiety and

22 concern over chemical, terrorist and SCUD missile

23 attacks were widespread. The great majority worked

24 long hours and faced severe environmental extremes and

25 working conditions.


1 Data on the psychological symptoms in this

2 group was gathered with a brief symptom inventory.

3 Deployed troops had significantly higher brief symptom

4 inventory scores of psychological symptoms than the

5 non-deployed troops, even after adjustment for age,

6 race, rank, education, marital status, branch of

7 military service, and use of cigarettes and alcohol.

8 An index developed by Walter Reed assessed the risk of

9 PTSD. The index was consistently higher for deployed

10 troops, whether active duty or Reserve. There were

11 strong correlations between reported exposures to

12 traumatic experiences in the Gulf War and PTSD

13 symptoms.

14 While the primary focus of the project was

15 on psychological adjustment, Walter Reed also compared

16 the rates among deployed and non-deployed of 23 self-

17 reported symptoms within the month preceding the

18 survey. Veterans who had been deployed reported

19 significantly higher rates of symptoms compared to

20 non-deployed subjects. The reported rates often were

21 two or three-fold higher in the deployed group. Such

22 differences remain significant, even after controlling

23 for age, rank, education, marital status, branch of

24 military service, and the use of cigarettes and

25 alcohol.


1 The Walter Reed Study Group concluded the

2 data leave no question that numbers of active Reserve

3 and National Guard forces called to service in

4 Operations Desert Shield and Storm are now troubled by

5 physical and mental distress to a degree not seen

6 among military personnel who did not deploy. Their

7 major recommendation was that the Military needed to

8 undertake efforts to collect baseline information from

9 units likely to deploy in the future, and to update

10 that information regularly.

11 Another study grew out of efforts to

12 provide support and debriefing services to vets at the

13 West Haven VA Medical Center. Samples of two units of

14 the Connecticut National Guard who had experienced

15 severe combat stress completed questionnaires one

16 month after the war and then both six months and two

17 years later. There was an overall significant

18 increases in PTSD symptoms over the two years as

19 measured on the Mississippi PTSD scale. Clinically,

20 it appeared that for the group as a whole, most PTSD

21 specific symptoms had already developed by six months.

22 Levels of exposure to combat were significantly

23 associated with scores on the Mississippi PTSD scale.

24 Several other studies examining stress

25 levels and responses on the Mississippi scale for PTSD


1 indicate perceived deterioration in quality of

2 relationships and increased interpersonal disfunction

3 in Gulf veterans compared to their status prior to

4 activation. Deployed Gulf War veterans demonstrated

5 significantly higher rates of psychological symptoms

6 than troops deployed elsewhere. Gulf War veterans

7 also reported significantly higher rates of depression

8 and higher rates of global psychological distress.

9 In units that suffered significant combat

10 injuries or performed grave registration duties,

11 studies indicated higher levels of psychological

12 symptoms than non-deployed troops, and also higher

13 reported rates of physical symptoms.

14 Can I have the next slide? In summary,

15 epidemiologic studies to assess the effects of

16 stressors, ranging from activation and deployment to

17 deaths and injuries from a SCUD missile attack, have

18 been studied in thousands of Gulf War veterans from

19 several states. The studies, which generally rely on

20 standardized tests, invariably find higher rates of

21 PTSD in Gulf War veterans than among individuals in

22 non-deployed units or in the general U.S. population

23 in the same age group. It also appears that groups

24 with the most severe stress, such as the group injured

25 by the missile attack, have a greater risk of PTSD


1 than other Gulf War veterans.

2 To date, in the large epidemiologic

3 studies performed in Boston and New Orleans, the rates

4 of PTSD and other psychologic conditions had increased

5 at the one year follow-up evaluation, rather than

6 ameliorating over time. Longer-term follow-up to

7 determine the effectiveness of treatment and outreach

8 efforts is indicated in these study groups. The long-

9 term effects of stressors of the Gulf War on active

10 duty troops remain largely unexplored.

11 Results from the competed studies on birth

12 defects were presented to the Committee in September.

13 At that time Dr. Kathy Hanna (phonetic) reviewed

14 findings from the three studies listed in front of

15 you. The studies, to date, have not demonstrated an

16 unusually high prevalence of birth defects in off-

17 spring of the Gulf War veterans. Ongoing studies will

18 be important in providing additional relevant

19 information to address the question of whether there

20 is an increased prevalence of birth defects and other

21 adverse reproductive outcomes among Gulf War veterans.

22 I'd be happy to address your questions.

23 CHAIRPERSON LASHOF: Does anyone have any

24 questions? Lois, on these studies on the

25 psychological impact, primarily they were the ones you


1 reviewed on PTSD as a result of stress related, did

2 they categorize any of the other psychological and

3 other diagnoses of stress related beside PTSD?

4 DR. BRIX: Yes. The other main thing that

5 was looked at quite often was depression. That was

6 frequently examined using standardized instruments.

7 In addition, many of the studies also looked at a more

8 global measure of psychological distress as well.

9 There are a couple of standardized instruments for

10 that. Those are the major things that they looked at.

11 CHAIRPERSON LASHOF: Did they include in

12 their diagnosis of the things they looked at, signs,

13 symptoms and ill-defined conditions?

14 DR. JOELLENBECK: Some of them did, and I

15 specifically referred to some of the studies that also

16 asked for health symptoms. The Walter Reed Study, for

17 example, they found that those symptoms -- those

18 symptoms were increased in those who would have been

19 deployed to the Gulf.

20 DR. BRIX: I could add that both in the

21 Walter Reed study and some of the other studies as

22 well, they looked at some of the symptoms like fatigue

23 and headache and so on, and in every instance that

24 they looked at that there was a strong relationship

25 between the existence of a psychiatric illness and a


1 higher prevalence of those types of symptoms.

2 DR. KNOX: So what does the literature

3 show of people who have chronic illness in the general

4 population and their co-existing diagnosis of

5 depression? Is it relatively high?

6 DR. BRIX: Yeah. There have been a number

7 of studies that have looked at that question, and

8 there is two ways to look at it. First, the person

9 could have been depressed first and then developed

10 some other type of chronic illness, or the person

11 might have had a chronic illness of some sort to begin

12 with and then became depressed as a result of that.

13 There is a high relationship either way, whichever was

14 first.

15 CHAIRPERSON LASHOF: Any more questions?

16 All right. Joe, I guess you're ready to tell us --

17 out of all of this that we've heard, you're going to

18 review the findings for us and the recommendations.

19 DR. CASSELLS: Based on the reviews you've

20 just heard, as well as other considerations and also

21 taking into account the uncertainties that we still

22 have as a group about some of these issues, the staff

23 recommends that the Committee consider four findings,

24 and they are as follows.

25 One, Gulf War veterans have experienced no


1 express mortality from natural causes during or after

2 the war. Gulf War veterans have experienced excess

3 mortality from external causes such as accidents,

4 which is consistent with the experience for veteran

5 populations from previous conflicts.

6 CHAIRPERSON LASHOF: s that clear? Does

7 anybody have comments? Okay. Go ahead.

8 DR. CASSELLS: Number two. Information

9 from the clinical programs indicate that muscular-

10 skeletal conditions are common components of Gulf War

11 veterans' illnesses.


13 DR. CASSELLS: Number three. Data from

14 the clinical programs and epidemiologic studies

15 indicate that stress related disorders are common

16 components of Gulf War illnesses.


18 DR. CASSELLS: Number four. Among the

19 subset of Gulf War veteran population examined in the

20 ongoing clinical and research programs, many veterans

21 have illnesses which are likely to be connected to

22 their service in the Gulf.

23 DR. KNOX: Can I just ask a question? If

24 you included the information about the muscular-

25 skeletal disease and stress-related disorders, why


1 didn't you also include the ill-defined symptoms? I

2 mean that was third. I'm talking about the

3 undiagnosed illnesses. If you're going to include the

4 top two, why don't you include the third one as well?

5 DR. CASSELLS: How does the Committee

6 feel?

7 CHAIRPERSON LASHOF: I had the same

8 reaction. I almost wonder about whether the finding

9 isn't that information from the clinical programs

10 indicate that a significant proportion of those have

11 illnesses of unknown ideology, including the muscular-

12 skeletal signs, symptoms and ill-defined conditions

13 and psychological symptoms, or something like that

14 that would -- or at least group the muscular-skeletal

15 and signs, symptoms and ill-defined conditions

16 together as being significant findings of undiagnosed

17 illness -- undiagnosed ideology, I mean.

18 DR. CASSELLS: I would prefer that latter

19 definition.

20 CHAIRPERSON LASHOF: Yeah. Any other

21 feelings about that?

22 MS. NISHIMI: I think Joe knows how to --

23 CHAIRPERSON LASHOF: How to word that.

24 Then you would still keep the data from clinical and

25 epidemiology to indicate stress-related disorders or


1 common components.

2 DR. CASSELLS: Right. Yes.


4 DR. CASSELLS: Because we had a special

5 meeting relative to that subject.

6 CHAIRPERSON LASHOF: That was separate --

7 those two we would consider separate. Clearly the

8 fourth one, I wondered whether you would consider

9 adding another finding and I'll throw it out to all of

10 you, as to whether following the finding among the

11 subset are likely to be connected to their service in

12 the Gulf, to add at the present time it is not

13 possible to make a definitive statement concerning the

14 extent of illness experienced by the Gulf War

15 veterans.

16 MS. NISHIMI: You want to combine that

17 into that finding?

18 CHAIRPERSON LASHOF: We could combine it

19 with the finding above rather than a separate finding.

20 MS. NISHIMI: Yeah. I think that can

21 work.

22 CHAIRPERSON LASHOF: It would be just a

23 second sentence in that one finding.

24 DR. CASSELLS: Right.

25 CHAIRPERSON LASHOF: It could begin with,


1 "However, at the present time --"

2 MS. NISHIMI: Right.


4 statement concerning the extent of illness

5 experienced.


7 CHAIRPERSON LASHOF: Any others? Okay.

8 Are there any other findings that people feel we

9 should pull out of the material we've heard today? I

10 don't know whether we should or should not, and I

11 throw it open for the Committee to consider, whether

12 another finding in there should be the statement that

13 did appear in the text clearly that the -- well, maybe

14 it's handled. I'm thinking aloud. It may be handled

15 by our statement, "At the present time it's not

16 possible to make a definitive statement." As to

17 whether it's necessary to also say something that the

18 registry and CCEP can not be used to make estimates of

19 the amount of illness, whether we want to throw that

20 into the findings or leave that in the background,

21 point out that that is a self-selected population only

22 and we do need to await the epidemiologic --

23 MS. GWIN: I think our judgment was that

24 it was more appropriate for background than for a

25 finding.


1 CHAIRPERSON LASHOF: Okay. All right.

2 I'll buy that. We're ready for the recommendations.

3 DR. CASSELLS: We'll move to the

4 recommendations, of which there are three. Number

5 one, research on possible causes and methods of

6 prevention of excess mortality from external causes

7 among veterans should receive high priority.

8 CHAIRPERSON LASHOF: Does everyone agree?

9 Okay.

10 DR. CASSELLS: Number two, research on

11 Gulf War veterans' illnesses should emphasize the

12 investigation of the causes and methods of prevention

13 and treatment of muscular-skeletal conditions and

14 stress-related disorders. Perhaps you want to also

15 include ill-defined diagnoses?


17 think you can't find causes and methods of prevention

18 --

19 DR. CASSELLS: Although there is an area

20 of research concern that is aimed in that particular

21 direction.


23 DR. CASSELLS: We'll leave this one as it

24 is?

25 CHAIRPERSON LASHOF: I think you could


1 leave this one as it is. Whether -- I mean the other

2 is really covered by our other research proposals that

3 we have under epidemiology, and so forth. We have

4 other research recommendations that we looked at last

5 time, do we not? We did? Yeah.

6 DR. CASSELLS: All right. Recommendation

7 number three, the government should continue to

8 provide high quality health care to Gulf War veterans

9 and continue to conduct research to identify the

10 causes and methods of prevention and treatment of Gulf

11 War veterans' illnesses.

12 CHAIRPERSON LASHOF: We can't argue with

13 that, but it's hardly a new recommendation and it's a

14 little bit of apple pie. I don't know that it's

15 specific enough to add a great deal to what we're

16 saying. Again, if you feel the need to put that in.

17 DR. KIDD TAYLOR: It says continue to

18 provide high quality health care. I guess the

19 question is have they been provided high quality

20 health care in the past, based on the perceptions of

21 the persons --

22 MR. CROSS: Joe, I would also say high

23 quality as opposed to quality health care. We're

24 hoping they're getting quality health care, regardless

25 of whether there's a high or low.


1 DR. CASSELLS: We are, but we also know

2 from our earlier September meeting that there are

3 problems with follow-up care in this community.

4 CHAIRPERSON LASHOF: We didn't really

5 discuss in this background material very much the

6 problems of coordination of care and some of the

7 clinical issues that we have discussed, and we've

8 heard a great deal about. We know that the government

9 and the VA has been moving toward getting veterans

10 under primary care physicians and case management

11 approach, but we also know that's fallen through the

12 cracks at least for some samples. It's hard to know

13 how many. Whether we need a recommendation to take a

14 look at the issue of coordination and case management

15 specifically as it affects the Gulf War veterans, it

16 does seem like even though -- and maybe it's even more

17 of a problem for those who come into the Registry or

18 the CCEP because they get sent to a separate clinic

19 and a separate set of doctors and then they go back to

20 ongoing care under a different setup because they are

21 travelling different distances and locus of care.

22 Maybe we need to say something more about that problem

23 of coordination and case management of care.

24 DR. CASSELLS: If we do that -- and I

25 don't think that's a bad idea -- would we put it here?


1 Would it go elsewhere?

2 DR. KIDD TAYLOR: I would suggest that

3 could go with the clinical access. Perhaps what we

4 could do with this recommendation is, along with the

5 sort of more global recommendation that we discussed

6 in the context of implementing the final reports and

7 recommendations and that was sort of this overarching,

8 is the staff could consider this in the context of

9 that kind of a placement in the final report and then

10 you would review that in that context, rather than

11 placing this recommendation here.

12 CHAIRPERSON LASHOF: I don't know where we

13 place these at this point in time, partly because I

14 can't keep in my mind all the ones we did at the last

15 meeting and which ones we included in the clinical

16 access and what the best placement -- and indeed we've

17 talked about the general outline and how the flow

18 would go for the report.

19 DR. CASSELLS: We talked about the

20 problematic aspects of it at the last meeting, so we

21 could certainly express that further.

22 CHAIRPERSON LASHOF: Yeah. When we do try

23 to incorporate all of this and reorganize it as we try

24 to make a more smooth-flowing report, we can leave it

25 to staff to where you want to put some of these


1 recommendations.

2 MS. NISHIMI: I guess so all we need here

3 is the guidance on whether the Committee would like to

4 retain the essence of this bullet as a recommendation,

5 regardless of its placement, or if there is something

6 about it that you find objectionable.

7 DR. KNOX: I think it's applicable, but it

8 just doesn't really belong here.

9 MS. NISHIMI: So you'd prefer to keep it?

10 DR. KNOX: Yes.

11 MS. NISHIMI: Is there any sentiment to --

12 let's put it this way. Is there any sentiment to

13 throwing it out? Okay. So then we will keep it and

14 we will --

15 CHAIRPERSON LASHOF: Put it in where it

16 seems to fit in a better way than standing out as a

17 sore thumb here. Okay. Are there any other questions

18 you have for the panel? Any additional on any of the

19 work that we've covered today on recommendations

20 specifically? Any recommendations any of you have in

21 mind that have not been hit upon either today or last

22 September, knowing that all of you remember all of the

23 recommendations that we agreed on in September?

24 DR. KIDD TAYLOR: It will be interesting

25 to see it combined.


1 DR. KNOX: I think so, too.

2 CHAIRPERSON LASHOF: Okay. I think then

3 we're ready to briefly discuss the next steps and wind

4 up today's meeting. Robyn, can you go through how we

5 plan to proceed from here to --

6 MS. NISHIMI: To November? The staff has

7 already begun to tear apart the previous staff memos

8 and put it into the outline that you've all received

9 previously, and they've been working toward that.

10 Prior to the next meeting, which will be in

11 Washington, D.C. on November 13th, you will receive a

12 draft to review and to get back to the staff and it

13 will be further revised. We will basically go through

14 the same process that we did for the interim report,

15 march through -- you know, make revisions, have the

16 Committee review it, make further revisions and then

17 move towards publication and delivery to the

18 Secretaries and the President before the end of the

19 year.

20 At each step of the way, obviously the

21 staff will take into account any late-breaking events

22 as they arise until it goes to the printers, after

23 which it will just be out of our --

24 CHAIRPERSON LASHOF: Robyn, when do you

25 expect to have the next draft to us prior to the


1 November 10th meeting?

2 MS. NISHIMI: I can't remember the target

3 date off-hand.

4 CHAIRPERSON LASHOF: The November 13th

5 meeting.

6 MS. GWIN: The first mailing of the draft

7 report is planned for it's next Friday -- is that the

8 18th or the 17th? Then the one just prior to the

9 November meeting I believe is now scheduled for

10 October 31st, is that right?

11 MS. NISHIMI: No, because the meeting is

12 on November 13th, so it must be like the Thursday

13 before for a Friday delivery, and I think the meeting

14 is on a Wednesday.

15 CHAIRPERSON LASHOF: Okay. So, in other

16 words, we will be getting a draft that you will expect

17 comments back from us --

18 MS. GWIN: Within a week.

19 CHAIRPERSON LASHOF: Within a week, and

20 those will then be incorporated into the draft that we

21 will see at November 13th?

22 MS. GWIN: Well, you'll get the draft a

23 few days before November 13th.

24 CHAIRPERSON LASHOF: Yeah, before the

25 13th, but we will review it on the 13th?


1 MS. GWIN: Right.

2 CHAIRPERSON LASHOF: Then after that it

3 will be --

4 MS. NISHIMI: We'll make further

5 revisions.

6 MS. GWIN: All will be mailed by that

7 point.

8 CHAIRPERSON LASHOF: Yeah, but that should

9 be our last meeting, unless you all suddenly get

10 unhappy with them. Okay. Any other questions anybody

11 has on the logistical issues that -- if not, we will

12 adjourn the meeting.

13 (Whereupon the meeting was adjourned at

14 3:50 p.m.)











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