TRANSCRIPTS DOCUMENT
NOTE: UNEDITED DOCUMENT
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UNITED STATES OF AMERICA
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PRESIDENTIAL ADVISORY COMMITTEE
ON GULF WAR VETERANS' ILLNESSES
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MEETING
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Tuesday, March 26, 1996
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The Committee met at Parker House, 60
School Street, Boston, Massachusetts at 8:35 a.m.,
Joyce C. Lashof, M.D., Chair, presiding.
Committee Members Present:
Joyce C. Lashof, M.D., Committee Chair
Arthur L. Caplan, Ph.D.
Admiral Donald Custis, M.D. (Ret.)
Major Marguerite Knox, R.N.C., M.N., C.C.R.N.
Andrea Kidd Taylor, Dr. P.H.
Also Present:
Robyn Nishimi, Staff
Jonathan Foster, Designated Federal Official
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INDEX
SPEAKERS: PAGE:
Joyce C. Lashof, M.D. 3
Lt. Col. Robert Wolfertz 4
Judy Scotnicki 11
Dolly Lymburner 17
SFC Stephen McGarry 24
Cecilia Mason 28
Christopher Dawer 34
Craig Stead 40
MSG Joseph Sturniolo 48
Victor Gordon, M.D. 54
MSG Leon Dodd 61
Edward Bryan 64
Diane Dulka 70
John Chestna 78
Laurance McInnis 81
Robert F. Lawson 87
Discussion of Clinical Syndrome Panel Meeting 89
Boston Environmental Hazard Group Discussion 101
East Orange Environmental Hazards Research 149
Portland Environmental Hazards Research Center 186
VA National Customer Feedback Center 219
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1 P R O C E E D I N G S
2 (8:35 a.m.)
3 MR. FOSTER: Good morning.
4 My name is Jonathan Foster. I'm from the
5 White House Office of Science and Technology Policy.
6 I am the Designated Federal Official for today's
7 meeting of the Presidential Advisory Committee on Gulf
8 War Veterans' Illnesses.
9 And without further ado let me declare the
10 meeting is open and turn it over to the Chairwoman of
11 the committee, Dr. Joyce Lashof.
12 CHAIRWOMAN LASHOF: Thank you very much.
13 We will be proceeding first with the open
14 public comment, that is, as our -- as we always do at
15 these meetings, and we have a number of people who
16 have asked to testify. Each person will have ten
17 minutes, five minutes for presentation and five
18 minutes for questioning, and unfortunately we have to
19 be pretty rigid and stick very much to that schedule,
20 but everyone knows that they can submit additional
21 testimony both today and after the meeting if they
22 wish.
23 I will signal at the end of the five
24 minutes and we'll work hard to keep us on schedule.
25 We will start with Lieutenant Colonel Bob
4
1 Wolfertz. Is he here?
2 COLONEL WOLFERTZ: Here.
3 CHAIRWOMAN LASHOF: Would you come
4 forward, if you want to go to the podium.
5 (Pause.)
6 Go right ahead.
7 COLONEL WOLFERTZ: Thank you for allowing
8 me this opportunity to speak about my experiences in
9 the Persian Gulf War as they relate to a series of
10 ailments known collectively as Persian Gulf Syndrome,
11 PGS.
12 I understand your investigation is aimed
13 primarily at the possible environmental causes of PGS.
14 I will address environmental issues as well as some
15 other possibilities which may be germane.
16 I volunteered to serve in Operation Desert
17 Shield leaving my duty station in Hawaii on August
18 24th, 1990, and arriving in Dhahran, Saudi Arabia, two
19 nights later. My initial assignment was to assist in
20 coordinating the off-load of the Marine Corps'
21 maritime prepositioning ships at the Port of Al
22 Jubayl, about sixty miles north of Dhahran.
23 The heat and humidity were intense, with
24 temperatures sometimes reaching into the low 120's.
25 We drank large quantities of bottled water provided by
5
1 the Saudis. The acclimatization process was slow and
2 long.
3 Once the MPS ship off-load was complete,
4 I moved to oversee the establishment of a combined
5 air/ground camp for U. S. Marine forces at a Saudi
6 Marine Corps base about fifteen miles south of Al
7 Jubayl. Sanitation conditions were not great but we
8 were eventually able to take showers with water from
9 the Persian Gulf purified by our own reverse osmosis
10 water purification units.
11 Periodically the Saudi Marines drove a
12 truck through our compound unannounced spraying a
13 chemical fog for insect control.
14 I spent two or three days a week north at
15 Al Saffaniyah where our initial four defenses were
16 established. On one occasion I acquired a severe case
17 of diarrhea, as did many other Marines, apparently
18 from a tainted chicken dish prepared at the First
19 Marine Division Field Kitchen.
20 In early 1991 I was assigned to serve as
21 the Executive Officer for the 4th Marine Infantry
22 Regimen initially occupying defensive positions
23 astride the Coastal Highway north of Al Mishab, Saudi
24 Arabia. While there, I experienced a severe athlete's
25 foot-like rash on my right foot. I'd never
6
1 experienced athlete's foot before despite many years
2 of participation in organized sports.
3 Operation Desert Storm kicked off in mid-
4 January with the air campaign against Iraq. As my
5 regimen prepared for eventual ground combat, I made
6 several reconnaissance trips to the Saudi-Kuwaiti
7 border scouting for future command post sites for the
8 regimental headquarters. During those ventures I
9 noted piles of dead animals, mostly goats, sometimes
10 camels, at various locations. Strangely, there was an
11 absence of flies or bugs around these carrion heaps.
12 Sometime in early February we received
13 anthrax vaccinations and began a daily dosage of
14 pyridostigmine bromide tablets as preventive medicines
15 for chemical and biological warfare. The Navy doctors
16 explained that these precautions were not approved by
17 the FDA for use in a preventive medicine capacity but
18 that they were safe.
19 The doctors also warned that one possible
20 side effect was kidney problems. We were told to stop
21 taking the tablets if we began experiencing lower back
22 pain.
23 When it came time to commit ground forces
24 to combat the 4th Marines was tasked with attacking
25 into Kuwait west of the Al Wafrah oil fields two days
7
1 before the official start of the ground offensive. We
2 were given the mission of breaching a section of the
3 Iraqi mine fields and obstacle belt and to provide
4 security for the 1st Marine Division's follow-on
5 mechanized armored assault. After exchanging fire
6 with the Iraqis we began receiving large numbers of
7 EPW's.
8 The 4th Marine's attack into Kuwait
9 brought us within close proximity of the burning Al
10 Wafrah and Um Gadair oil fields. On one occasion the
11 expanding cloud of thick, black smoke turned day to
12 night well before sunset. Several days later it
13 rained bringing specks of oil down with the raindrops
14 so that it literally rained oil for most of the day.
15 Our subsequent attack to seize the Al
16 Jubayl Airport from the Iraqis was interrupted by a
17 chemical alert from the German FOCHS vehicle traveling
18 with us with its state-of-the-art chemical/biological
19 detection system. We went to full mission-oriented
20 protective posture for a couple of hours before the
21 all clear was sounded. After the war ended we passed
22 through the area where the gas had been detected.
23 On the morning of February 28th I awoke
24 with a stabbing pain in my lower back. Fearing the
25 negative side-effect of the pyridostigmine bromide
8
1 tablets as warned by the doctors, I stopped taking the
2 pills, but the pain persisted, and finally back in
3 Saudi Arabia in early March I was seen by a doctor.
4 He was unable to tell me what was wrong, suggesting
5 that maybe it was a strain.
6 The pain eventually subsided, then flared
7 up again after I returned to my duty station in
8 Hawaii. It subsided again until after my retirement
9 in July 1991 when I had the pain for several months.
10 Over the course of the next year I began having
11 chronic headaches and fatigue, severe pain in my right
12 elbow, a regularly recurring infection on my right
13 eyelid, spots and rashes on my hands, arms and legs.
14 The rash on my right foot returned frequently. I
15 found myself always clearing my throat.
16 I reported these symptoms to the VA
17 Hospital in Manchester, New Hampshire, and was
18 subsequently diagnosed by Dr. Victor Gordon as having
19 Persian Gulf Syndrome.
20 Over the past four years I've experienced
21 significant pain in my elbow, left knee, and currently
22 my right shoulder. Fatigue remains a problem, maybe
23 because of poor sleep due to the joint pain. I still
24 clear my throat frequently, and the spots and rashes
25 come and go.
9
1 Since taking doxycycline for a month early
2 this year, the eye infection and foot rash have not
3 recurred.
4 The constraints of a five-minute time
5 limit have forced me to shotgun a lot of information
6 in your direction. May I clarify any of it for you?
7 CHAIRWOMAN LASHOF: Thank you very much.
8 Are there questions from the Committee?
9 DR. TAYLOR: I'd like to ask just one.
10 Can you -- you mentioned a lot of dead
11 animals and other environmental exposures that you
12 had. Is there any one that you think might stand out
13 in -- or during the Gulf War?
14 COLONEL WOLFERTZ: The one that's clearest
15 in my mind is a pile of dead camels. Again, I would
16 have thought that ---
17 DR. TAYLOR: Attributed to possibly
18 chemical ---
19 COLONEL WOLFERTZ: I have no idea why they
20 were there or how long they'd been there. No, I don't
21 know.
22 CHAIRWOMAN LASHOF: Dr. Custis?
23 DR. CUSTIS: Did you have a diagnostic
24 workup when you reported to the VA?
25 COLONEL WOLFERTZ: Yes, I did.
10
1 DR. CUSTIS: And they gave you nothing in
2 the way of result?
3 COLONEL WOLFERTZ: I spoke with Dr. Gordon
4 about the results of some of the tests. Most of them
5 didn't show anything conclusive.
6 DR. CUSTIS: Specifically did they have
7 anything to say about your urinary tract, your
8 kidneys?
9 COLONEL WOLFERTZ: No.
10 DR. CUSTIS: You indicated that you had
11 started on doxycycline. How long ago did you go on
12 that and how long did you take it?
13 COLONEL WOLFERTZ: That was -- I saw Dr.
14 Gordon, I believe it was the 9th of January, and I
15 took the doxycycline for a month.
16 DR. CUSTIS: And was that prescribed by
17 Dr. Gordon?
18 COLONEL WOLFERTZ: Yes, it was.
19 DR. CUSTIS: I see. And since you've
20 completed that course what has your symptomatology
21 been?
22 COLONEL WOLFERTZ: I have not -- the
23 infection on my right eyelid used to come about every
24 two to three to four weeks on a regular basis. I have
25 not had that since. And the rash on my foot, about
11
1 the same cycle. I haven't had that since.
2 DR. CUSTIS: What about the joint pains
3 and ---
4 COLONEL WOLFERTZ: I -- at this time -- I
5 am unable to practice Little League baseball with my
6 two sons because I can't throw the ball right now
7 because of the pain in my right shoulder. It seems to
8 -- it travels, the joint pain.
9 DR. CUSTIS: And the fatigue, is that
10 still a problem?
11 COLONEL WOLFERTZ: That's ongoing.
12 DR. CUSTIS: Are you working full time
13 now?
14 COLONEL WOLFERTZ: I am. I'm a property
15 manager for the Church of Jesus Christ Latter Day
16 Saints.
17 DR. CUSTIS: Thank you very much.
18 CHAIRWOMAN LASHOF: Marguerite, do you
19 have any questions?
20 MAJOR KNOX: No.
21 CHAIRWOMAN LASHOF: Thank you very much.
22 We appreciate your testimony.
23 COLONEL WOLFERTZ: You're welcome. Thank
24 you.
25 CHAIRWOMAN LASHOF: Next one is Judy
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1 Scotnicki.
2 MS. SCOTNICKI: Thank you for giving me
3 this opportunity to be here this morning, and I hope
4 you'll be patient if I cough and I won't lose my
5 seconds of my five minutes.
6 As a citizen living in Concord,
7 Massachusetts, who began researching depleted uranium,
8 DU, almost seven years ago, the main motivation for my
9 doing this work was for my concern for my own and
10 other's children. My concern is related to health
11 risk from escaping airborne radioactive particulate
12 because I live a mile-and-a-half from a manufacturer
13 of depleted uranium products, including the depleted
14 uranium penetrator.
15 The depleted uranium penetrator was first
16 used in warfare during the Gulf War. Hundreds of tons
17 of depleted uranium were fired during the Gulf War.
18 Fourteen hundred Iraqi tanks were destroyed by
19 depleted uranium penetrators, as well as numerous
20 vehicles and other equipment. It has been reported
21 four out of five Gulf veterans entered depleted
22 uranium contaminated tanks and vehicles. This means
23 a large number of Gulf veterans could have breathed
24 depleted uranium.
25 The most serious health risk from
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1 particulated depleted uranium are through inhalation
2 and ingestion. Depleted uranium is highly toxic from
3 a radiological and chemical standpoint.
4 I am here before this Advisory Committee
5 today because of my concern both for the Gulf veterans
6 and their children. I also am concerned about the
7 possible connection between depleted uranium and the
8 severe health effects of some of the children born to
9 Gulf veterans, as well as Iraqi children.
10 Two doctors who have gone to post-war Iraq
11 and have raised the possibility that depleted uranium
12 may be killing Iraqi children are Dr. Eric Hoskins and
13 Dr. Segorth Gunther. Dr. Gunther is an epidemiologist
14 and head of the International Yellow Cross. He has
15 made several trips to Iraq every year since 1991. He
16 attributes fallout from depleted uranium to death and
17 radiation sickness among Iraqi children. He observed
18 a high rate of death and illness in southern Iraq
19 where many of these children had collected spent
20 depleted uranium shells left in the desert from the
21 Gulf War.
22 Dr. Eric Hoskins, a Canadian public health
23 specialist, was medical coordinator for a Harvard
24 University health team that went to post-war Iraq. He
25 has recommended that epidemiologists examine the
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1 connection between depleted uranium and cancer.
2 As Dr. Hoskins notes, the health risks
3 from depleted uranium become much greater after a
4 depleted uranium projectile has been fired. Fired
5 shells release airborne uranium particles that can
6 enter the body easily. This uranium then deposits
7 itself in bones, organs and cells. If depleted
8 uranium is in the organs of Gulf veterans, this could
9 potentially affect their children born after their
10 return from the Gulf War.
11 I have found in my years of research and
12 educational work on depleted uranium that there are
13 not many doctors or scientists who know very much
14 about depleted uranium. This is why it is important -
15 - and I urge the Committee to do this -- to be open to
16 learning more about this form of uranium.
17 Repeatedly I'm asked questions, such as,
18 "Is depleted uranium radioactive?" Or, "Isn't
19 depleted uranium like natural occurring uranium?"
20 Yes, depleted uranium is radioactive, and no, it's not
21 like natural occurring uranium. Natural occurring
22 uranium is highly dilute in nature, locked up in
23 minerals in non-metallic form, not easily subject to
24 chemical action; whereas depleted uranium always
25 occurs in highly concentrated form, chemically
15
1 available for uptake in biological systems.
2 The radioactivity of depleted uranium is
3 relevant, not only because it is more than ninety-nine
4 percent uranium 238, an alpha emitter, but also
5 because the uranium 238 is always accompanied by its
6 decay progeny, thorium 234 and protactinium 234.
7 The continuous penetrating radiation by
8 beta particles and gamma rays of these depleted
9 uranium decay products must be considered in cancer
10 risk and genetic damage.
11 In Concord, Massachusetts, where I live,
12 there is worry about health risks from the production
13 of the depleted uranium penetrator in our community
14 where Nuclear Metals, Inc., NMI, has been
15 manufacturing uranium products for thirty-seven years.
16 Nuclear Metals has refused to make public air
17 emissions data from its stacks for the first twenty-
18 four years of the company's operation.
19 My organization, Citizens Research and
20 Environmental Watch, through its own research and that
21 of its commissioned experts, has found high levels of
22 depleted uranium, 18.9 times background, in soil
23 nearly a mile east from the company site. This means
24 depleted uranium has escaped in the past from Nuclear
25 Metals, Inc.'s stacks and been deposited in the soil.
16
1 Teledyne Isotopes of Westwood, New Jersey,
2 did the soil analysis. Harvard University
3 subsequently confirmed the DU finding. Crew and their
4 experts have never said Nuclear Metals, Inc., is the
5 cause of higher cancers in Concord. Certainly many of
6 us wonder if this is an environmental connection.
7 I personally have heard Dr. Richard Clapp,
8 the first Director of the Massachusetts Cancer
9 Registry, say that citizens in Concord should be
10 concerned about high cancer rates. Based on Mass.
11 Cancer Registry data for the years 1982, '86, male
12 leukemia in Concord was one of the highest in the
13 state, and double the state average. Review of Mass.
14 Cancer Registry's data, including up to 1990, finds
15 Concord had a high incidence of six types of cancer
16 relative to state averages. They are breast cancer,
17 skin melanoma, testicular cancer, brain and central
18 nervous system cancers, multiple myeloma and thyroid
19 cancer. Thyroid cancer was the second highest in the
20 state, nearly two-and-a-half times the state average.
21 While the reason for the high incidence of
22 these cancers is not known, according to the
23 Massachusetts Cancer Registry report, ionizing
24 radiation is among the risk factors for all these
25 cancers except testicular cancer.
17
1 Certainly I and other citizens as well as
2 veterans potentially affected by DU are convinced that
3 research must be done to examine the connection
4 between depleted uranium and cancer, other health
5 effects and genetic effects around the depleted
6 uranium processing, manufacturing and testing sites,
7 including long-term health studies of depleted uranium
8 workers and their children and Gulf veterans exposed
9 to depleted uranium and their children conceived after
10 the Gulf War.
11 Thank you very much.
12 CHAIRWOMAN LASHOF: Thank you.
13 Are there questions?
14 The only question I have is you have
15 gotten involved and interested and you have a citizens
16 group working on this because of the plant near you.
17 Do you have any -- have you had any contact with any
18 of the Gulf War veterans' groups and do you have any
19 information related to actual exposure to depleted
20 uranium?
21 MS. SCOTNICKI: Yes. I work with some of
22 the Gulf War veterans' groups in the country through
23 the National Citizen Depleted Uranium Network which is
24 part of the military toxics project. My husband was
25 a Vietnam veteran and so one reason I am very
18
1 concerned about this issue is because I know what it's
2 like to be a veteran's wife and also we have children
3 and we're -- my husband potentially was exposed to
4 Agent Orange in Vietnam and then to come and move into
5 a community when he finally got back from his last
6 tour from Vietnam and find that there was another risk
7 related to military involvement of our country and
8 this weapon was, I can tell you, very unnerving, and
9 that has been part of the impetus in the work that I
10 do.
11 CHAIRWOMAN LASHOF: I see. Thank you.
12 MS. SCOTNICKI: Thank you.
13 CHAIRWOMAN LASHOF: Thank you very much
14 for your testimony.
15 MS. SCOTNICKI: And I'll provide copies to
16 Mr. Ewing of my statement.
17 CHAIRWOMAN LASHOF: Good. Fine. Thank
18 you.
19 Dolly Lymburner?
20 MS. LYMBURNER: You are very good with
21 names. No one ever gets mine right.
22 I'm on staff at the Military Toxics
23 Project, currently working as an organizer for the
24 Depleted Uranium Citizens Network. And I want to
25 thank the members of the President's Advisory
19
1 Committee for allowing me this opportunity to offer
2 testimony and recommendations.
3 The Military Toxics Project is a national
4 non-profit environmental organization whose members
5 are people who have been affected by the military's
6 use of toxics. The Depleted Uranium Citizens Network
7 which Judy spoke about is made up of citizens' groups
8 and individuals living near or working at DU weapons
9 development sites, manufacturing facilities, testing
10 sites, and also veterans of the Persian Gulf War and
11 atomic veterans.
12 The Army Environmental Policy Institute,
13 AEPI, in response to a Congressional request, prepared
14 a report entitled "Health and Environmental
15 Consequences of Depleted Uranium Use in the U. S.
16 Army." The Depleted Uranium Citizens Network
17 critiqued that report with our response entitled
18 "Radioactive Battlefields of the 1990s," which I'm
19 presenting to you today. I've given copies for all
20 the members of the committee also and have brought
21 with me today two copies of the AEPI report, a 200-
22 page report. So, if everyone needs a copy I'm sure
23 the staff will make copies for you.
24 We have a few additional points which we
25 didn't include in this original report that I'd like
20
1 to make to you today.
2 Number 1, AEPI states within the first
3 three pages of its report in its introduction that the
4 Army has not pursued recommended health and
5 environmental studies, and that there is not adequate
6 medical or exposure information to defend the
7 assertion of no significant health effects from
8 depleted uranium.
9 In using the argument that DU, depleted
10 uranium weapons use is justified because of the
11 protection that it gave our troops, as they do on page
12 76 of their report, we could excuse the use of any
13 weapon, why don't we use our arsenal of atomic bombs,
14 or continue the use of such herbicides as Agent
15 Orange? Why not continue to use nerve gas, mustard
16 gas, et cetera, instead of entering into treaties to
17 discontinue the use of those chemical agents because
18 there is a greater picture to consider, that of our
19 responsibility to the health of our troops using those
20 weapons and to humanity at large.
21 I won't even get into the health effects
22 now being suffered by Iraqi children which Judy did
23 touch on, but those health effects should be
24 investigated in our search for the truth behind
25 Persian Gulf veterans' illnesses and the birth defects
21
1 suffered by their children.
2 Number 3, we disagree with the report's
3 assertion on the effects of low level radiation as
4 they do on page 102 and 103.
5 Number 4, we do agree with the training
6 recommendations that were made in the AEPI report as
7 they do in section 65.
8 Although several of our members have given
9 both written and oral testimony on depleted uranium
10 and its health effects, we were disappointed in that
11 this committee's interim report made little, almost no
12 comment on the issue. We sincerely hope that this
13 will be corrected in the final report.
14 As a part of that process, a panel should
15 be convened that would deal specifically with depleted
16 uranium, such as those which you have had on clinical
17 issues, epidemiological research and drugs and
18 vaccines, and the upcoming panel on chemical and
19 biological agents. We would be happy to assist the
20 committee with names of people who might be helpful
21 for you to interview.
22 The many possible pathways of exposure and
23 contamination of troops has not been fully looked
24 into. Depleted uranium after impact and oxidation
25 becomes aerosolized particles. The Persian Gulf area
22
1 with its desert sands stirred up by the movement of
2 troops and their equipment, tanks, trucks,
3 helicopters, created a storm of DU particles. Crews
4 firing DU munitions were subjected to the backfire of
5 DU particles. Troops doing recovery of tanks or
6 entering enemy tanks disabled by DU munitions were
7 exposed to these toxic radioactive DU particles.
8 Large numbers of troops were exposed by the DU
9 munitions fire in Dohar, Saudi Arabia.
10 DU particles can be ingested, inhaled, and
11 even enter the body through open wounds.
12 These are -- the following are our
13 recommendations.
14 Number 1, full body counts, invito
15 monitoring for DU-exposed troops should be done.
16 Although workers at the Aerojet Munitions production
17 facility are given full body counts twice a year, this
18 same opportunity is not extended to our soldiers.
19 Number 2, long term testing and tracking
20 of DU-exposed veterans.
21 Number 3, soldiers on active duty in
22 Bosnia or in any future conflict should be given
23 training and protective gear for DU.
24 Studies previously done on the health
25 effects of low level radiation should be considered as
23
1 you look at the DU issue.
2 Number 5, medical personnel need to be
3 trained to identify and treat DU health products.
4 Number 6, we should establish a peer
5 review committee of radiation health experts from the
6 civilian sector to act as a watch dog authority over
7 all studies conducted by U. S. government departments
8 and agencies on those who have been exposed to DU.
9 Number 7, there should be a coordination
10 of data with allied countries who also served in the
11 Gulf with us and whose veterans are also suffering
12 Gulf War illnesses.
13 Number 8, a moratorium should be
14 established on the use and export of DU munitions
15 until at least the studies that were recommended in
16 the AEPI report are completed.
17 When interviewed by Maggy O'Kane for the
18 British documentary entitled "Riding the Storm," which
19 I know staff has a copy of, Brent Scowcroft, National
20 Advisor to President Bush, said, "DU is more of a
21 problem than we thought when it was developed. It
22 turned out perhaps to be wrong."
23 The position of the Depleted Uranium
24 Citizens Network is that the use of DU weapons should
25 be banned.
24
1 And I just have one other thing I'd like
2 to say.
3 The NRC, the Nuclear Regulatory
4 Commission, regulates very closely the handling, the
5 disposal of depleted uranium, and it's very closely
6 regulated until it goes out into the field and used by
7 the troops and then there are no regulations.
8 CHAIRWOMAN LASHOF: Thank you very much
9 for your testimony.
10 MS. LYMBURNER: You're welcome.
11 CHAIRWOMAN LASHOF: Are there any
12 questions?
13 MAJOR KNOX: I have a question. You
14 mentioned that we should have protective gear that
15 would protect us against depleted uranium. What would
16 that be?
17 MS. LYMBURNER: Suits, I believe, and
18 masks. Whatever is given to workers who are exposed
19 to or have to handle depleted uranium. Exactly what
20 that gear is, I'm not sure, but I'm sure I could find
21 that out for you. But it is recommended in the
22 report.
23 There was also a recommendation that
24 actually came down to the Army during the time of the
25 Persian Gulf that this type of training and protective
25
1 gear be given, and yet it never reached the troops, so
2 that warning was never given to the troops. And I
3 don't know in Bosnia now where DU weapons are being
4 used what kind of training or protection is being
5 given.
6 MAJOR KNOX: Does your research show any
7 of the workers who deal with depleted uranium, do they
8 have abnormal birth defects in their children?
9 MS. LYMBURNER: I don't know about the
10 birth defects. I do know that the workers at the
11 Aerojet plant in Tennessee actually went out on strike
12 for health and safety reasons and two of the problems,
13 and there may be more, I know John Paul has given you
14 testimony, but kidney problems was a big problem, and
15 also leukemia.
16 DR. TAYLOR: And that brings another
17 question to my mind. Were there any symptoms similar
18 to what we've been hearing from other Gulf War
19 veterans with relationship to chronic fatigue syndrome
20 and some of the other things experienced by the
21 workers?
22 MS. LYMBURNER: I, you know, other people
23 that I work with would be glad to let you know that
24 and they do work at facilities. But I think one of
25 the reasons why we have atomic veterans that work with
26
1 us is because they also had radiation exposure, and I
2 know some of these bone problems and kidney problems,
3 leukemia and things like that, are problems that were
4 suffered by both groups of people.
5 CHAIRWOMAN LASHOF: Thank you very much.
6 Just for the record I would say that we
7 have every intention of looking into this area. We do
8 have a copy of the AEPI report, although that is not
9 an official report yet, it's not been officially
10 released, as you know.
11 MS. LYMBURNER: Yes.
12 CHAIRWOMAN LASHOF: And when it's finally
13 reviewed and released it's probably more appropriate
14 to comment further upon it.
15 We did not discuss this in the interim
16 report because in the interim report we only reported
17 on those issues we had actually looked at up until
18 that date, but this is on our agenda.
19 MS. LYMBURNER: Are you planning to have
20 a panel specifically dealing with that issue as you
21 did with all the other issues?
22 CHAIRWOMAN LASHOF: I do not believe so at
23 this time, but those are still open as to what
24 additional panels we'll have. As our work progresses
25 we'll see whether we need to.
27
1 MS. LYMBURNER: All right. Thank you.
2 CHAIRWOMAN LASHOF: Thank you.
3 Stephen McGarry, please. Is Stephen
4 McGarry here? Oh. I'm sorry. Didn't spot you.
5 Thank you.
6 SERGEANT McGARRY: Good morning. I'm
7 Sergeant First Class Stephen McGarry. I'm stationed
8 at Fort Devens, the 94th Regional Support Command.
9 I served over in the Gulf for ten months
10 with the 324th Data Processing Unit. Over that time
11 frame -- or since my return in June 1991 I've had
12 eight surgeries and I've had problems with my liver
13 count, bilirubin count. I'm not really a drinker or
14 anything like that, but that's what they thought that
15 was attributed to it, but I've had a poor reaction to
16 a bilirubin count which has been technically
17 unexplainable.
18 As I said -- mentioned, eight surgeries.
19 I'm on convalescent leave as I speak right now. I
20 just finished two surgeries: one on my ankle and
21 elbow surgery. I'm having problems with every part of
22 my joints, two knee operations, one ankle, my right
23 ankle, my left foot, had throat reconstruction because
24 of breathing problems. And then I had elbow surgery
25 on my right elbow, too.
28
1 The joint problems I've been having is
2 from bone spurs or whatever causing various parts of
3 my body to lock. I've also gained forty-five pounds
4 since the last year-and-a-half which has been really
5 unexplainable, probably a lot because of the lessened
6 physical activity, but I've gone from the MASA
7 Physical Fitness Team now to not being able to
8 participate in any physical activity pretty much at
9 all.
10 And the only thing that could be
11 accountable for it is the unexplained situation would
12 be the nerve agent pills that we had to take. It
13 seemed to affect every nerve in my body, a lot
14 probably could pay for being physically active through
15 my military career, but I'm paying for it now with, as
16 I said, eight surgeries. I've got another surgery
17 coming May 2nd to remove bones from my wrist because
18 my wrist -- I've got severe problems in my left wrist.
19 CHAIRWOMAN LASHOF: Any questions?
20 DR. CUSTIS: Has it ever been suggested
21 that you be processed for a medical dis -- you're on
22 active duty, are you?
23 SERGEANT McGARRY: Yes, I am, sir.
24 Unfortunately for myself right now, all
25 these surgeries have been handled individually. The
29
1 way Uncle Sam works it, they resolve a problem, it
2 gets done, instead of everybody looking at it in one
3 fell sweep or whatever. It's eight different doctors
4 that work, set up a cure or whatever, and tackle each
5 situation as it comes. So the answer is no.
6 I've been -- I went before a Medical
7 Review Board for my latest -- what they call a
8 profile. I have a profile right now because of back
9 problems. I can't stand in any one location for more
10 than then minutes or sit in one location for more than
11 ten minutes and I was considered fit for duty. So
12 that's as it stands right now.
13 CHAIRWOMAN LASHOF: What is your duty
14 assignment at this point?
15 SERGEANT McGARRY: I'm a computer
16 specialist at Fort Devens. I'm a training NCO. I
17 handle all the training schedules and activities that
18 go on on a -- setting up for a weekend drill and two
19 weeks ---
20 CHAIRWOMAN LASHOF: Have you been able to
21 carry out those duties?
22 SERGEANT McGARRY: To the best of my
23 capabilities, yes.
24 CHAIRWOMAN LASHOF: When was the first
25 surgery? Over what period of time have you had all
30
1 the surgeries?
2 SERGEANT McGARRY: The first surgery was
3 back in May of '93. I had the right elbow surgery.
4 My right elbow kept on locking up on me.
5 CHAIRWOMAN LASHOF: And all of them have
6 been for the same thing; that is, bone spurs in
7 different joints?
8 SERGEANT McGARRY: Bone spurs or painful
9 joint areas.
10 CHAIRWOMAN LASHOF: The surgeries have
11 always been to remove the bone spurs?
12 SERGEANT McGARRY: Yes, ma'am.
13 CHAIRWOMAN LASHOF: What have they done
14 for surgery?
15 SERGEANT McGARRY: I had a bunionectomy --
16 excuse me. That was the first one. That was back in
17 1992. I had the problem over in the Gulf with a
18 bunion from wearing the boots over there, and they
19 couldn't -- they didn't have the proper capabilities
20 of doing the surgery over in the Gulf so as soon as I
21 come back I had the operation done in early 1992.
22 So, it has been always somewhat bone-
23 related except for the throat reconstruction.
24 CHAIRWOMAN LASHOF: And what was the
25 throat reconstruction due to?
31
1 SERGEANT McGARRY: I had problems
2 breathing and my tonsils were somewhat swollen so they
3 removed the tonsils and uvula and opened up the
4 passageway to my throat. That possibly, being up in
5 Kuwait or wherever, the Gulf --
6 CHAIRWOMAN LASHOF: Did they give you any
7 diagnosis in relation to the bone spurs?
8 SERGEANT McGARRY: No. They just resolved
9 the problem.
10 DR. CUSTIS: There is a diagnosis:
11 osteochondritis dissecans. Are you familiar with that
12 term? Did they use that term with you?
13 SERGEANT McGARRY: No, sir.
14 CHAIRWOMAN LASHOF: Thank you very much
15 for your testimony.
16 Cecilia Mason.
17 MS. MASON: Good morning.
18 CHAIRWOMAN LASHOF: Morning.
19 MS. MASON: Thank you for the opportunity
20 to be here today to talk about veterans who are sick
21 from the Persian Gulf conflict.
22 My name is Cecilia M. Mason. I am the
23 chairperson for the Desert Storm Committee, founded in
24 1991, this is a Worcester, Massachusetts, non-profit,
25 tax-exempt organization. Our purpose thus far has
32
1 been an official welcoming home tribute in 1991 for
2 the Gulf veterans, the erection of the State War
3 Memorial commemorating the Persian Gulf veterans for
4 the Commonwealth of Massachusetts, in 1993.
5 Plus, we have also become a source of
6 public information and support group. Our focus now
7 is on the Gulf War Syndrome, and we are working to
8 secure funding for the research on those veterans who
9 have been injured by the environmental exposures in
10 the Persian Gulf conflict and who continue to
11 experience chronic illness. I guess I'm coming down.
12 It is essential for the VA to move toward
13 recognition of disability status of this syndrome of
14 which our veterans are so affected. In the interim,
15 it is equally vital to recognize the problems that
16 this disability brings, such as fatigue, sleep
17 disturbance, forgetfulness, joint pain, diarrhea,
18 muscle weakness, rashes, confusion, weight gain, and
19 like a growing number of Gulf War veterans, some of
20 whom remain apparently healthy, has fathered a child
21 with devastating birth defects.
22 Patterns of effects have begun to emerge,
23 patterns unlikely to result from chance alone.
24 Miscarriages are frequent among the spouses and women
25 who served in the Gulf, and the list goes on.
33
1 Gulf veterans may be suffering from a
2 general overload of chemical pollutants and their body
3 fluids are actually toxic, resulting in chemical-
4 induced illnesses, where they find themselves plagued
5 by tremendous physical, emotional and financial costs
6 from their disability.
7 It is the responsibility of this
8 government to take immediate action in order to
9 stabilize or minimize symptoms and avert further
10 disability.
11 There is a remarkable similarity of
12 patterns of these illnesses that these individuals
13 report to those reporting MCS, multiple chemical
14 syndrome, in the civilian population. MCS is also
15 referred to as an environmental illness and a chronic
16 somatic and disability debilitating symptoms triggered
17 by environmental exposures on a day-to-day basis.
18 MCS may be thought of as an acute
19 exposure, and within time the individual begins to
20 react to more and more substances and products at
21 lower and lower exposure levels.
22 The syndrome is most frequently caused by
23 an acute chemical exposure such as those reported
24 during the Persian Gulf conflict who face mind-
25 boggling array of environmental hazards, such as
34
1 pesticides, diesel fuels, oil fires, inoculations or
2 vaccines, depleted uranium, and the list just keeps on
3 going.
4 Veterans are also experiencing in their
5 search for validation of their illness the search for
6 a physician and diagnosis, and in their difficulty,
7 the inability to obtain acknowledgement for their
8 disability status.
9 The mechanism involved causing MCS is not
10 known. However, an observation level, those who study
11 exposure to substances and products that trigger their
12 symptoms, become more and more disabled both in number
13 of symptoms and the level of disability. Lack of
14 information on this health problem within the military
15 and the VA structure and the absence of literature to
16 recommend basic lifestyle changes in order to minimize
17 exposures result in continued ill health and more
18 severe health problems.
19 Lack of validation and the acceptance of
20 such symptoms from the VA and DOD all underline those
21 reluctant to address this problem and make necessary
22 adjustments and modifications in their life and
23 lifestyle. This may increase stress levels,
24 thereby exasperating systems for those already facing
25 illness and disability.
35
1 In conclusion, the health problems
2 experienced by Persian Gulf veterans have been
3 numerous and compelling. These veterans have made
4 research on chemical sensitivity imperative. The time
5 has come to determine what is the syndrome? What
6 measures and methods will be taken by this government
7 whose obligation and duty it is and now must be filled
8 without delay, to find out what this elusive
9 affliction is all about.
10 We urge the VA and DOD to work with other
11 agencies already involved with research, policy and
12 social illness. Please, do not reinvent the wheel.
13 Help set it in motion. For you see, I am also the
14 mother of a Persian Gulf veteran who is also afflicted
15 with the same symptoms.
16 CHAIRWOMAN LASHOF: Thank you very much.
17 Are there questions?
18 DR. TAYLOR: Just one quick one. You work
19 with a network of Gulf War veterans, is ---
20 MS. MASON: Correct.
21 DR. TAYLOR: And most of the veterans that
22 are in your network, are they all suffering from the
23 illness in some ---
24 MS. MASON: The majority.
25 DR. TAYLOR: The majority. Okay. How
36
1 many -- do you have a number?
2 MS. MASON: About eighty percent.
3 DR. TAYLOR: Eighty percent. And that's
4 in this area of the country, in Massachusetts, or near
5 your home?
6 MS. MASON: Within Massachusetts that I
7 have with my group. Okay?
8 DR. TAYLOR: How many are in your group?
9 MS. MASON: Well, there are several.
10 Let's see. There's about right now a hundred and ten
11 total. And I have been getting doctors, one of which
12 is a Dr. Edward Driscoll in Worcester, to take on some
13 of these cases at no cost.
14 DR. TAYLOR: Most of them are without
15 medical coverage then?
16 MS. MASON: That's right. And a lot of
17 them cannot get disability because the VA will not
18 recognize this when there's research already underway
19 for this particular problem.
20 CHAIRWOMAN LASHOF: Have they -- the
21 veterans you've worked with -- have they all
22 registered with the VA? Are they on the VA registry?
23 MS. MASON: Most of them. Yes. Most of
24 them did.
25 CHAIRWOMAN LASHOF: And they have sought
37
1 care at VA facilities?
2 MS. MASON: Most of them did, yes, and
3 they come back and tell me the same thing, that the
4 government doesn't want to do anything about this, and
5 I tell them the government has to recognize it because
6 there's what they call the multiple chemical syndrome
7 by the general population, and if these people have
8 been disabled because of everyday chemicals, you can
9 imagine what the veterans are going to be disabled
10 from with the, like I said, the array of chemicals
11 that they had to face.
12 DR. TAYLOR: Have any of these veterans
13 that have sought care at the VA, have they been
14 referred to some of the centers that are set up for
15 that?
16 MS. MASON: No.
17 DR. TAYLOR: So, they're lacking the
18 referral ---
19 MS. MASON: Yes, they are.
20 CHAIRWOMAN LASHOF: --- to the specialized
21 centers.
22 MS. MASON: Yes. And I -- again, I find
23 that a little astonishing. I don't understand why the
24 VA and DOD has not been able to communicate with these
25 agencies.
38
1 DR. TAYLOR: Are they going to the Boston
2 VA?
3 MS. MASON: Well, I've got a few from
4 Connecticut that come in. I don't know if they go to
5 Boston, but most of them do.
6 CHAIRWOMAN LASHOF: Thank you very much
7 for your testimony.
8 Christopher Dawer?
9 MR. DAWER: Madam Chairman and members of
10 the Committee, I want to thank you for giving me this
11 opportunity to speak with you providing information
12 about my illness as a result of the Persian Gulf War
13 and about my treatment by the veterans -- or the
14 Department of Veterans Affairs.
15 I was deployed to the Persian Gulf region
16 on September 29th, 1990, as part of an Air Force
17 active duty thirteen-man air base perimeter defense
18 team from Hanscom Air Force Base, Massachusetts. My
19 primary duty was M-60 machine gunner at a remote
20 ammunition supply depot in central Saudi Arabia.
21 On April 2nd, 1992, I was diagnosed with
22 a brain tumor. This was discovered after my headaches
23 that began during the war worsened and my vision began
24 to deteriorate. This tumor has recurred two more
25 times resulting in a total of four surgeries and
39
1 permanent damage to my endocrine system. The tumor is
2 still present today and I continue to be treated at
3 Mass. General Hospital's neuroendocrine clinic.
4 On May 4th, 1993, I underwent a surgery at
5 Mass. Eye & Ear to remove a large amount of fluid
6 accumulating in my sinuses. The physicians there do
7 not know why this occurred. Other diagnoses include
8 asthma which requires intermittent courses of steroid
9 and nebulizer treatments, and I am also forced to use
10 bronchial dilators throughout each day in order to
11 breathe comfortably.
12 Symptoms I now have that defy diagnosis
13 are near constant muscle pain and spasms, severe
14 fatigue and recurrent rashes.
15 Since the Gulf war has ended I have been
16 treated at nine different hospitals and examined by
17 well over one hundred physicians. This includes the
18 Department of Veterans Affairs which, in my opinion,
19 is a broken system.
20 Fortunately, I and approximately five
21 hundred other Gulf War veterans have found Dr. Victor
22 Gordon, who's present here with us today, at the VA
23 Medical Center in Manchester, New Hampshire. Dr.
24 Gordon is one of the few truly professional and
25 dedicated physicians within the Department of Veterans
40
1 Affairs. Thanks to him and a very small number of
2 others in the VA system, Gulf War veterans have
3 received some of the medical attention that we
4 deserve.
5 God bless you, Dr. Gordon, for not giving
6 in to the ineffective and reckless bureaucracy that
7 governs the very agency sworn to help this nation's
8 veterans.
9 I would like to know why most VA
10 physicians not only dismiss Gulf War veterans'
11 complaints but some have been nothing short than
12 abusive. A perfect example was on April 5th, 1995,
13 when I was asked by the Veterans Administration to
14 report for some tests at the Causeway Street Clinic in
15 Boston.
16 While Dr. Alfred Lanes was examining me
17 for skin rashes, he stated to me with a grin, he
18 stated to me, "Hey, Chris, be a man. Take off your
19 shirt." After telling me to look through hundreds of
20 copies of my medical records for myself for anything
21 that had to do with skin rashes, Dr. Lanes said one
22 more disgusting comment for me. I was a young man
23 with a family living life in the fast lane. Dr. Lanes
24 also told me he had a diagnosis for me: Yuppy
25 syndrome. Yuppy syndrome.
41
1 I resent the fact that Dr. Lanes displayed
2 total and blatant disregard for my health and well
3 being. This VA physician not only ridiculed and
4 insulted me, but also my family, along with thousands
5 of other sick and dying Gulf War veterans. These
6 verbal attacks that Dr. Lanes directed at me were
7 degrading and ugly in every sense, and I'm certain
8 that the Honorable Jesse Brown, Secretary to the
9 Department of Veterans Affairs, would be disheartened
10 to know that this mistreatment is occurring within the
11 VA system.
12 I'm very troubled by the fact that my
13 military medical and shot records apparently along
14 with thousands of other Gulf War veterans are now
15 missing. I have personally spoken with hundreds of
16 sick Gulf War veterans and their records cannot be
17 located either. Is this just another unexplainable
18 coincidence within the Department of Defense?
19 What about Persian Gulf VA claims for
20 service-connected disabilities? Even though I was
21 granted service connection for one of my disabilities,
22 and thank goodness I was, the VA has continuously
23 deferred ruling on several others going on three-and-
24 a-half years. I even submitted hundreds of supporting
25 medical documents and spent a total of six weeks at
42
1 the so-called Persian Gulf Environmental Center at the
2 Washington, D.C., Veterans Administration Clinic.
3 At one point my remaining claims
4 mysteriously disappeared from the VA's computer
5 system. I was forced to seek Senator Kennedy's help
6 to straighten this problem out.
7 The veterans of the Persian Gulf War do
8 not deserve the brush-off from the brass within the
9 Department of Defense. The fact that many of us were
10 sent into chemical and biological combat without
11 adequate training is not only deceptive but purely
12 lethal.
13 The Pentagon states that the winds never
14 blew down from the north carrying biological and
15 chemical warfare agents over us during the war. While
16 the military might not have taught many of us about
17 wind direction, the Boy Scouts did. Most of our
18 chemical and biological protective equipment was
19 manufactured and packaged during the Vietnam War. The
20 fact that there were hundreds of chemical alarms
21 sounding after SCUD missile attacks speaks for itself,
22 and the constant Allied bombing of chemical and
23 biological targets in Iraq and the subsequent fall out
24 on the troops is horrifying.
25 I understand that the Pentagon along with
43
1 government agencies have stated that they do not want
2 this to be another Agent Orange. It already is.
3 Someone once told me that the truth will
4 set you free. Unfortunately, I feel in my heart that
5 there are some in our government who do not believe
6 this, and I sometimes wonder if it was their son,
7 daughter, brother or sister who was an ill Gulf War
8 veteran that there may just be some justice after all,
9 because it's not only the veterans they are hurting
10 but their families as well.
11 My daughter's only three years old and
12 asking questions like, "Is the booboo inside your head
13 all gone yet, Daddy?" And, "Did you take all your
14 medicine today?" Maybe the top brass at the Pentagon
15 could explain to her why her twenty-seven-year-old
16 Daddy spends more time at the hospital than he spends
17 playing with her.
18 I applaud this Committee for gathering
19 information about our plight. I think the most
20 effective way, however, would be to actually spend a
21 week with us sick Gulf War veterans and our families
22 at home. Only then would you know the true magnitude
23 of Gulf War Syndrome.
24 Thank you.
25 CHAIRWOMAN LASHOF: Thank you very much.
44
1 Are there any questions?
2 You said that you've been in nine
3 different hospitals and over a hundred doctors.
4 MR. DAWER: That's correct, ma'am.
5 CHAIRWOMAN LASHOF: Where has that been
6 and ---
7 MR. DAWER: In the Boston area, such as
8 Mass. General Hospital, Mass. Eye & Ear, different
9 hospitals in the Boston area, some in Concord,
10 Massachusetts, Leominster, Massachusetts.
11 CHAIRWOMAN LASHOF: Those have been non-
12 military hospitals, not VA hospitals?
13 MR. DAWER: That's correct. Well,
14 actually, that isn't -- nine hospitals is including
15 the Veterans Administration which is the Washington,
16 D.C., VA, which is the Environmental Clinic, that was
17 set up, and also to see Dr. Gordon on a regular basis
18 up in Manchester VA up in New Hampshire.
19 CHAIRWOMAN LASHOF: The care in the other
20 civilian hospitals has been paid for how?
21 MR. DAWER: Well, thank goodness I have a
22 job, I work for MIT, and they know my situation, and
23 I work when I can work, but they're giving me full
24 benefits, in order for me to get ---
25 CHAIRWOMAN LASHOF: I see. So you have
45
1 comprehensive health insurance that has been able to
2 cover your medical costs?
3 MR. DAWER: Thank God that I do.
4 CHAIRWOMAN LASHOF: Okay. Thank you. Any
5 other questions?
6 Thank you very much.
7 Mr. Craig Stead?
8 MR. STEAD: Madam Chair, members of the
9 Committee, good morning. Thank you for allowing me to
10 speak about petroleum illness, its symptoms, diagnosis
11 and treatment.
12 My name is Craig Stead, and I live in
13 Putney, Vermont. I'm a chemical engineer with two
14 degrees from Cornell University. I'm also a
15 registered professional engineer.
16 I know petroleum illness. As a civilian
17 I've lived with it for twelve years. I got it from
18 drinking oil-contaminated water. For two-and-a-half
19 years I also showered in the water. I know the
20 disabling symptoms of petroleum illness. The
21 inability to breathe, the sleepless nights, the
22 emergency room visits. I've found ways to both
23 diagnose and treat petroleum illness.
24 I was driven to this research by my own
25 health problems, and I've actually gone from in 1986
46
1 when I was sleeping twenty hours a day and
2 unbelievably ill to be able to stand in front of you
3 as a functioning human being.
4 So, what I'd like to do is share this
5 knowledge of my ten years of research with this
6 committee and the veterans ill with Gulf War illness.
7 I've read the transcripts of all twelve
8 days of hearings you've had, and I find the symptoms
9 expressed by many of the ill veterans are my own. I
10 would say that at this point my symptoms, in many
11 cases, I do not have what I had ten years ago, but I
12 am still disabled from severe chronic asthma and I'm
13 on a drug therapy program for it. And I notice in
14 this room there's a problem with the air conditioning
15 system that makes you want to cough; something's in
16 it.
17 One of the things I've noticed from all
18 your hearings so far is I haven't seen anyone
19 connecting the petroleum exposure of the veterans to
20 the Gulf War illness as a causative factor. And one
21 point I'd make is there is a large body of knowledge
22 already available on petroleum illness, its symptoms,
23 its diagnosis and its treatment, and I would emphasize
24 diagnosis and treatment because that seems to be one
25 of the problems we have right now: how do you
47
1 diagnose this illness and how do you treat it.
2 I researched this because I happened to be
3 a scientist and I was very sick and I had been
4 perfectly healthy prior to that, and my doctor at
5 Dartmouth Hitchcock Medical Center directed me to the
6 library. I also have contacts at the Harvard School
7 of Public Health and the University of Massachusetts
8 Chenowith Laboratory which relates to how you diagnose
9 and analyze petroleum in the body.
10 So, to sort of summarize it, I understand
11 and know the methods of diagnosis and treatment for
12 those veterans who have petroleum illness, and I don't
13 believe that's the only causative factor in the
14 Persian Gulf Syndrome, but I think it's a major one.
15 We all know petroleum was a major
16 environmental exposure for our troops in the Gulf War.
17 There was a petroleum mist in the air continuously
18 from the oil field fires, and your exposure to it was
19 a function of the local weather conditions, air
20 inversions and wind direction. Petroleum contaminated
21 the drinking and shower water, both on land as well as
22 on the ships. Combat clothing was soaked with
23 petroleum, and the troops were in this combat clothing
24 for days, or longer. I don't know, I haven't talked
25 to enough of them to find out what exactly was that
48
1 exposure.
2 There was also significant exposure to
3 petroleum fumes and diesel exhaust.
4 The petroleum was inhaled from the air, it
5 was ingested with food and water, and it was absorbed
6 through the skin.
7 The symptoms of petroleum illness are
8 numerous, and they are a function of your genetic
9 makeup. This is my conclusion. If you take a hundred
10 people and put them in a theater like the Gulf War,
11 some will have no symptoms from a petroleum exposure,
12 and from what I can gather from my research it would
13 appear like maybe half of the people would have no
14 symptoms and the other half would have anywhere from
15 mild to intensely severe symptoms.
16 Typical symptoms are -- and this is just
17 a short list -- is shortness of breath, wheezing and
18 cough -- and this is from the petroleum in the lungs.
19 And the petroleum does not come out of the lungs
20 easily.
21 There's an inability to sleep soundly, and
22 this leads and is part of chronic fatigue, although it
23 is not the lack of sleep that is the chronic fatigue.
24 There is a sensitivity to petroleum
25 exposures. There's a catchall which is called
49
1 multiple chemical sensitivity or multiple chemical
2 syndrome. I think it's a little more complex than
3 that. But specifically, you have a -- your symptoms
4 are increased by exposure to petroleum solvents,
5 petroleum fumes, and combustion fumes, in general, air
6 pollution.
7 There's also immune system dysfunction,
8 you could call it immune suppression. You have a high
9 susceptibility to infections, and in my particular
10 case I had incredible lung infections, which I don't
11 have now, but for a time I did.
12 There are other symptoms besides these,
13 but this is just sort of a brief overview.
14 How do you diagnose petroleum illness?
15 One way is you can wash the lungs with a saline
16 solution. It's called bronchoalveolar lavage. You
17 can pull the petroleum out of the lungs and you can
18 analyze that petroleum to find its environmental
19 origin.
20 Another method is computer tomography,
21 which I called it attuned X-ray. I'm not an expert in
22 this at all. But regular X-rays do not pick up
23 petroleum in the lungs.
24 And, of course, there's biopsy of the
25 target organs which is the lungs, liver, spleen and
50
1 lymph nodes. A section of the target organ will show
2 visible petroleum droplets.
3 How do you treat it? The most commonly
4 used treatment is oral steroids. It reduces the
5 inflammation of the lungs. It allows expectoration of
6 the oil in the lungs. And it will reduce the low
7 grade fever which sometimes shows up. There are some
8 diet food groups that appear to help in metabolizing
9 toxic petroleum compounds. One technique was washing
10 the lungs with a detergent which would actually wash
11 the petroleum out and recover lung function. And
12 there's immunotherapy using drugs to boost the immune
13 system.
14 Conclusion: I have some solutions to
15 diagnose and treat petroleum illness. They're based
16 on my own experience and my own ten years of research
17 and working with medical schools. I'm here to share
18 the knowledge with this Committee and the ill vets.
19 And with that, thank you.
20 CHAIRWOMAN LASHOF: Thank you very much.
21 Questions?
22 DR. TAYLOR: I just wanted to ask one.
23 Mr. Stead?
24 MR. STEAD: Yes.
25 DR. TAYLOR: Did you receive a diagnosis
51
1 from a physician from the VA system or is this based
2 on your own research and ---
3 MR. STEAD: This is my own research
4 because I became ill from an unknown cause. I'd been
5 perfectly healthy until I got this exposure, and when
6 I realized ---
7 DR. TAYLOR: Where did you receive the
8 exposure exactly?
9 MR. STEAD: I had a domestic water system
10 that had a pump in it that had an oil-filled motor,
11 and the motor had a hole in it and leaked oil into my
12 water for two-and-a-half years, and not only I got
13 sick but my entire family did from this petroleum
14 exposure. It smelled like diesel oil in our shower.
15 DR. TAYLOR: And you went to a physician,
16 or no? This -- you just ---
17 MR. STEAD: This came out of my own
18 research. I said there has to be an environmental
19 cause to this illness I'm experiencing. My son had
20 three hospitalizations for respiratory problems.
21 DR. TAYLOR: Were there any other water
22 systems affected in your neighborhood, or was this
23 just your own system?
24 MR. STEAD: It's a private drilled well,
25 but I'd also mention I have in my own connecting with
52
1 people found other people with a similar experience
2 with the same type of pump who had similar symptoms;
3 so that's how I've sort of put this together.
4 DR. TAYLOR: And you sampled the water and
5 found out the exact content or the amount of petroleum
6 in the water?
7 MR. STEAD: No. You cannot -- the type of
8 petroleum that was in the water -- and this is, I
9 think, an important point to this Committee -- people
10 think of petroleum as one single compound, say
11 gasoline or diesel or so forth. In fact, it's a very
12 complex mixture of compounds, and a Kuwait crude would
13 have well over a thousand compounds in it, many of
14 them never described in the sense of scientifically.
15 The impact of the petroleum on you in the
16 sense of the health effect is a function of what
17 exactly you breathe in. The material we breathed in
18 was an industrial oil that was one-third aromatic
19 compounds like mothballs, and it's a very, very toxic
20 oil, it turns out. Other oils are much more benign,
21 let's say pharmaceutical grade mineral oil.
22 So, to go back to -- you cannot test for
23 that oil in our water.
24 DR. TAYLOR: You couldn't determine the
25 exact contents of the petroleum, like from the water,
53
1 you could not do that.
2 MR. STEAD: No, you could not. In fact,
3 we had our water tested several times because we said
4 it smells like oil and the labs came back and said
5 there is no problem with your water, but the type of
6 oil that was in there no lab in the world would have
7 tested for, it turns out.
8 Any other questions?
9 CHAIRWOMAN LASHOF: You also said that the
10 diagnosis can be made by bronchoalveolar lavage and
11 also by biopsy. Have you had that done and have they
12 found lipid deposits in any of your organs?
13 MR. STEAD: No. I have not. This comes
14 from my study of the literature and case studies.
15 Basically, if you look at the subset of where this --
16 most of this information is, on the first level it's
17 under a thing called lipoid pneumonia. It has not
18 been done on my because I have not been able to afford
19 it. I am uninsured and I have had incredible medical
20 bills.
21 CHAIRWOMAN LASHOF: Okay. Thank you very
22 much. No other questions.
23 MR. STEAD: Thank you.
24 CHAIRWOMAN LASHOF: Staff Sergeant Joseph
25 Sturniolo.
54
1 SERGEANT STURNIOLO: Madam Chairperson,
2 panel, I'd like to thank you for hearing me.
3 My name is Joseph Sturniolo. I was a
4 First Sergeant over in the Gulf. We deployed over in
5 January '91. We were in Saudi Arabia and Kuwait. Our
6 job was collection, handling and processing prisoners
7 of war.
8 The illnesses since I've come back, I've
9 had shortness of breath, I've been diagnosed with
10 asthma, I've been diagnosed with problems with my
11 liver, I've been diagnosed with problems with my
12 knees, and I've also been diagnosed with post
13 traumatic stress syndrome.
14 In going back to the Gulf, one thing that
15 I know affected my -- that caused asthma that affected
16 me was that a lot of times over there during -- when
17 the oil fires started, up until almost noontime it
18 would be dark, the sky would be black.
19 We'd learn -- because we were out in the
20 desert -- we'd learn that when we washed our clothes
21 or anything to take them in at night and not to touch
22 the tent -- the guide ropes of the tent or the tent,
23 because if you touched them your hands were black,
24 because all this stuff would come down at night with
25 the condensation, with the moisture. So, anything we
55
1 had outside, we had to bring into the tents.
2 So, we knew we were, you know, we had to
3 be breathing this stuff in.
4 In '94 I signed up -- 1994 I signed up and
5 got with the Department of Defense physicals and I
6 took a physical in '94. They called me back in '95
7 and they sent me to Walter Reed Army Hospital for two
8 weeks. That's where they diagnosed me with liver
9 problems. They said my knees -- they call it -- they
10 said my kneecaps were dislocated from the ligaments.
11 The -- I forget what they called them, condensation
12 patella was -- I'm not sure about the pronunciation.
13 They also -- that's where they diagnosed
14 me as having post traumatic stress syndrome.
15 They also told me there I had asthma, and
16 what was amazing about that was first they told me,
17 well, you know, asthma is hereditary. I said nobody
18 in my family's ever had asthma. I don't have any
19 relatives that ever had asthma. And they said, well -
20 - and I have it in writing from the doctor. He says,
21 well, you have asthma now and hopefully you'll outgrow
22 it. I'm forty-five years old. I don't think I'm
23 going to outgrow asthma. I thought it was a
24 ridiculous thing to put down in writing, even to say
25 it to me. You know, you're going to outgrow it.
56
1 I didn't go -- they called me up for Phase
2 3. I didn't go back for Phase 3. They told me it
3 would be a minimum thirty-day stay in the hospital
4 and, you know, I can't afford to do that. I have a
5 job here; I probably wouldn't have it when I came
6 back. Who's going to support my family? And they
7 said just a minimum thirty days, so they could be
8 extended for longer than that, so I didn't go back.
9 When I told them that, they mentioned to
10 sign up with the VA up here in Boston, which I did.
11 In August of '95 I filed a claim. I took all the
12 paper work from Walter Reed and filed a claim with the
13 Boston VA. I haven't heard anything since. They send
14 me letters saying that it's still reading. So, that's
15 about where it left -- where I'm left off with that.
16 They called me for a physical in February
17 and pretty much they just went over what -- the paper
18 work I already had submitted to them, and they just
19 confirmed that yes, you should seek counseling, you
20 have post traumatic stress syndrome; yes, you have
21 asthma, but they just leave it at that. They don't
22 say it was caused by the Gulf; they don't say anything
23 about it. They just say "you now have asthma." All
24 right? You now have psychological problems. Seek
25 counseling. You know.
57
1 Hopefully once they finish the procedure,
2 you know, I'll get -- they'll sign me up for
3 counseling.
4 And as far as the liver problem goes, they
5 said -- they said, you have fatty tissue in your
6 liver. They don't know how it got there, or they
7 didn't have a reason for me. They say, we normally
8 see that in extremely obese people or in alcoholics.
9 I'm neither. I'm not obese and I don't drink. So,
10 you know, they don't have any reason why I have these,
11 you know, I have fatty tissues in my liver.
12 They just told me to come back every six
13 months and retest and see how it goes.
14 I am a little overweight, I'll admit to
15 that. They told me to lose about ten pounds and see
16 what happens. So, that's pretty much it.
17 CHAIRWOMAN LASHOF: Thank you very much.
18 Questions?
19 MAJOR KNOX: You said you didn't go to the
20 VA until 1994. Were you having symptoms at that time
21 that sent you for your physical?
22 SERGEANT STURNIOLO: I was, I -- yes. I
23 had shortness of breath, I had trouble breathing. I
24 had normal aches and pains, but I'm getting old, you
25 know, so I just figured, you know, you're getting old,
58
1 you have normal aches and pains, you know. So I
2 didn't really give it too much concern.
3 And then I had a real bad bout of -- it
4 must have been the asthma, later diagnosed as asthma,
5 and I had really trouble breathing, really severe
6 trouble breathing, so that scared me, and that's when
7 I, you know, I went to -- signed up for a doctor. And
8 they told me about the program that the government was
9 just starting, which they were just starting in '94,
10 so I signed up for it, and that's when.
11 MAJOR KNOX: The other question is you
12 mentioned that you hoped that they would provide
13 counseling for you for post traumatic stress disorder.
14 SERGEANT STURNIOLO: Right.
15 MAJOR KNOX: You feel like you could
16 benefit from that counseling? You don't feel like
17 they labeled you with that unnecessarily?
18 SERGEANT STURNIOLO: I have trouble
19 sleeping; I have a lot of problems. And when I went
20 to the Causeway Street VA when they did that thing,
21 the evaluation there, the psychiatrist recommended
22 group counseling, and he also recommended medication
23 which I really don't know about the medication. But
24 I -- it couldn't hurt. You know. I'd be willing to
25 try it.
59
1 CHAIRWOMAN LASHOF: Are you now receiving
2 counseling ---
3 SERGEANT STURNIOLO: No.
4 CHAIRWOMAN LASHOF: --- or are you just on
5 a waiting list? Are you on a waiting list or what?
6 SERGEANT STURNIOLO: I'm just waiting to
7 hear back from the VA. I haven't started anything.
8 I'm just waiting to hear from the VA. I filed all
9 this paper work with the VA, like I said, and they
10 said they'd get back to me, and I'm just waiting.
11 CHAIRWOMAN LASHOF: How long has that been
12 since they advised counseling until now?
13 SERGEANT STURNIOLO: That was February of
14 -- that was February 14th. And I'm just waiting to
15 hear from them. I haven't heard from them yet.
16 CHAIRWOMAN LASHOF: Okay. Thank you. No
17 other questions. Thank you very much.
18 Dr. Victor Gordon.
19 DR. GORDON: Good morning.
20 I've been taking care of Persian Gulf
21 veterans since '91. I have 504 Persian Gulf veterans
22 under my medical care. Eighty-five percent were
23 younger than thirty years of age when first seen by
24 me. They came from all military branches.
25 When I had twenty Persian Gulf veterans
60
1 under my care, I was not sure what was going on. When
2 the number of these veterans increased to 193, I was
3 convinced that I was dealing with environmentally-
4 related illnesses. When the number increased to 504
5 in '96, I became concerned about their health. The
6 reasons for my concern are multiple. I will mention
7 a few.
8 So far, the scientific research has not
9 been able to provide clear answers in regard to the
10 nature of these illnesses. We are still using
11 hypotheses and no scientifically sound facts. This
12 situation generates endless controversy which
13 precludes progress and understanding of Gulf-related
14 diseases.
15 Five years after the Gulf War some of the
16 studies are still focusing on epidemiology and
17 psychiatric aspects of these illnesses. One of the
18 epidemiology studies which is going on, National
19 Health Service of Gulf War veterans and their
20 families, promises to come up with the final answers
21 as to whether the Gulf War veterans are sicker or not
22 when compared with a controlled group.
23 I have the greatest respect for the
24 investigators of this study, but I also have serious
25 concern as to whether this study can be done correctly
61
1 at this time. The investigators propose to use a
2 random selection for the subjects for this study. The
3 conflagration of Persian Gulf War veterans population
4 group, the way it presents in '96 makes this random
5 selection questionable because of repeat divisions on
6 this population which was incurred by the Persian Gulf
7 registry process.
8 Before the Persian Gulf registry started,
9 the health characteristics and variables could have
10 been accomplished successfully. The attached figure
11 to my statement explains how this division occurs.
12 When the characteristics and variables of a group or
13 groups are known to the investigator it creates the
14 potential for a bias selection as an alternative to a
15 random selection. The bias selection leads to skewed
16 results; skewed results in any direction will generate
17 controversy which could divert our focus from solution
18 of Gulf War health problems.
19 What we need now are studies which must
20 focus on the Gulf physical and environmental hazards
21 which our troops were exposed to, on finding
22 diagnostic physiological and biological markers for
23 these diseases, on the pathogenesis of these
24 illnesses, and on finding a treatment strategy.
25 The promotion of stress duty as the mother
62
1 of all Persian Gulf illnesses will not solve the
2 problems of the majority of Gulf veterans. Less than
3 five percent of veterans in my group present symptoms
4 which my supported diagnosis of PTSD. Even these
5 veterans present other additional symptoms which do
6 not fit the description of PTSD. The causes of this
7 sickness require alternative explanation. A
8 psychiatric diagnosis cannot be established in a
9 particular person until medical evaluation and
10 diagnostic tests to exclude the physical illness has
11 been accomplished.
12 This is a time honored law in medicine
13 which both medical and psychiatric doctors adhere to.
14 Unfortunately, the law is ignored in cases of Gulf War
15 veterans.
16 I would like to bring to your attention a
17 few unusual health problems with my Persian Gulf
18 veteran group. Four individuals developed recurring
19 muscle paralysis which will last two to four hours
20 followed by full recovery. The routine neurological
21 evaluation and workup were negative. One of them had
22 very extensive evaluation and was negative for any
23 organic disease. The final diagnosis given to this
24 patient by doctors was conversion reaction of
25 hysteria, a diagnosis which I do not agree with.
63
1 My many veterans report teeth problems.
2 This consists of softening of teeth with easy
3 breakability followed by infection. On examination I
4 see cracked, broken and worn off teeth. Some cases
5 have periodontal disease and abscesses. Dental
6 specialists have no explanation for these tooth
7 diseases occurring in a young person.
8 Disorientation while driving is commonly
9 reported by veterans. Many veterans report finding
10 themselves in places or towns far from their initial
11 destination.
12 Ten veterans reported skin and general
13 reaction upon contact with sperm on their sexual
14 partners.
15 Six veterans report birth defects and
16 disease in their children conceived and born after the
17 Gulf War.
18 Twenty veterans reported miscarriages in
19 their spouses. Of this, several spouses have more
20 than one miscarriage.
21 The current available treatment for these
22 veterans relies heavily on anti-depressants, mood
23 swing controllers, sleeping pills and conventional
24 treatment for some of the symptoms. This treatment
25 does not address the cause or causes of symptoms in
64
1 the majority of veterans. This treatment is like
2 treating a boil with a Band-aid.
3 How I treat these veterans, I spend
4 unlimited time with them and I'm available for them
5 whenever they need to see me beside their scheduled
6 follow-up appointment. I treat the symptoms using the
7 conventional treatments. I keep an eye on their
8 symptoms in order to observe the trend of this.
9 The general trend is the persistence of
10 these symptoms. In very few cases I noticed some
11 improvement, and in some cases worsening of the
12 symptoms.
13 Thank you.
14 CHAIRWOMAN LASHOF: Thank you very much,
15 Dr. Gordon.
16 Marguerite?
17 MAJOR KNOX: Dr. Gordon, I just want to
18 commend you. To have veterans feel very pleased with
19 the care that you've given them makes the committee
20 feel very good. It saddens all of us to know that
21 there are veterans who feel like they are not
22 receiving the care that they need from the VA, and you
23 need to be commended for that.
24 DR. GORDON: Thank you.
25 DR. CUSTIS: I would second that, Dr.
65
1 Gordon. You're obviously a very caring physician.
2 DR. GORDON: Thank you.
3 CHAIRWOMAN LASHOF: Dr. Gordon, how long
4 have you been with the VA?
5 DR. GORDON: I've been with the VA for
6 seventeen years.
7 CHAIRWOMAN LASHOF: So, you've seen
8 veterans from other wars come back.
9 DR. GORDON: Exactly.
10 CHAIRWOMAN LASHOF: And have you seen
11 similar conditions following Vietnam or ---
12 DR. GORDON: Not at all, but I'm glad you
13 brought this to me. I have some veterans from the Air
14 Force who were stationed during the Gulf War in the
15 Red Sea. Those veterans have fewer or no symptoms as
16 compared to the rest of the veterans being in the war
17 zone.
18 I have four veterans who contacted me
19 because they would like to go on the Persian Gulf
20 registry but those veterans were deployed to the Gulf
21 in the summer of '93 and thereafter. I asked them if
22 they had some problems. They said no, not at all. I
23 asked them, do you see any problems in your comrades
24 of the unit. They said no, I'm not aware of any
25 problems.
66
1 So -- but I don't see, obviously, the same
2 thing or similar thing in veterans from other war.
3 Well, I see, because I'm in charge of Agent Orange,
4 too, I see some of those symptoms like fatigue and
5 memory problems, skin rashes, in some of the Vietnam
6 War veterans who came through the Agent Orange to see
7 me.
8 CHAIRWOMAN LASHOF: Have you treated any
9 of the -- well, you have treated the veterans with
10 doxycycline?
11 DR. GORDON: Exactly.
12 CHAIRWOMAN LASHOF: Yes. Have you treated
13 all the veterans, all five hundred, with it ---
14 DR. GORDON: No.
15 CHAIRWOMAN LASHOF: Or -- how do you
16 select which ones you've been giving ---
17 DR. GORDON: In particular I select
18 veterans who come with sinusitis, I notice sinusitis
19 requires at least four weeks of antibiotic therapy,
20 and I choose doxycycline because it's easy to take
21 once a day for thirty days and it's relatively cheap,
22 and the hospital has no objection.
23 CHAIRWOMAN LASHOF: I see. All right.
24 Are you familiar with the work of Dr.
25 Nicholson?
67
1 DR. GORDON: Yes, I am.
2 CHAIRWOMAN LASHOF: Who has been
3 recommending doxycycline across the board?
4 DR. GORDON: Yes, I am.
5 CHAIRWOMAN LASHOF: You have not adopted
6 that kind of an approach?
7 DR. GORDON: I've been asking for over
8 five years now, let's get busy on research and find
9 out what is going on and come up with a treatment
10 strategy. Until then I don't dare to embark on those
11 ---
12 CHAIRWOMAN LASHOF: That's fine.
13 Again, thank you for your concern and the
14 kind of care you are giving.
15 DR. GORDON: Thank you.
16 CHAIRWOMAN LASHOF: Master Sergeant Leon
17 Dodd.
18 SERGEANT DODD: Good morning, ladies and
19 gentlemen.
20 My name is Leon Dodd. I'm a former First
21 Sergeant in the United States Army, retired after
22 twenty-six years.
23 I never went to the Veterans
24 Administration until after I came back from the
25 Persian Gulf. I had problems from my Vietnam
68
1 experience and I felt that it would be a career-
2 hindering scenario for me to go to the VA. But once
3 I came back from the Persian Gulf suffering from
4 chronic fatigue, lack of any steady sleep which was
5 eventually diagnosed as PTSD, painful joints, muscle
6 spasms, and frequent bloody stool.
7 I was assigned at times to supervising,
8 care and protecting of the lives of as many as five
9 hundred troops at any given time during my tenure over
10 there. We spent forty-five days in Kuwait City during
11 the oil fires running a MASH unit. My vehicle, which
12 just so happened to be a white Jeep Cherokee, ended up
13 being dark gray by the end of that tour of duty over
14 there.
15 When we first were under attack through
16 SCUD attacks, many of us, many of my troops, after we
17 got out, even after we got out of our chemical gear,
18 which was two to three hours after the attacks were
19 over and the all-clear was sounded, we would still
20 feel a misting coming down. It's a misting that was
21 not a petroleum-based mist of a fuel that would be
22 from a device that was set off up above us, but we
23 strongly believe, due to the fact that the next day
24 the flying creatures, birds, were kind of lying about
25 dead.
69
1 All our chemical detection devices went
2 off on every single SCUD attack we had. We were given
3 the story that it was a malfunction.
4 I'm sorry that all our gear is not -- I've
5 heard many people say their training and their gear
6 was inadequate. I've been a senior NCO for my entire
7 -- for half my career. Our training is exemplary, and
8 if it wasn't, that's the fault of their training
9 NCO's. And our equipment is better than any in the
10 world. It protects us. And unfortunately we didn't
11 have enough protection in this war.
12 I don't know what else I can say that
13 everyone else hasn't said here. It's -- there are
14 chronic effects that continually affect us all that
15 are causing our lifestyles to drastically change. I
16 appreciate the fact that there is a committee looking
17 into this scenario for the Gulf War. On the other
18 hand, I'm a little offended we never had such a
19 committee to work on Agent Orange when I spent two
20 years nine months in Southeast Asia. But we can't go
21 back in time, and as long as we can work forward from
22 here and hopefully all the veterans will be taken care
23 of, that would be wonderful.
24 I have found the VA, in my particular
25 scenario, to be extremely helpful. I go to the VA
70
1 over in Bedford, Massachusetts. If there's a problem,
2 I walk in, or if I can't get there I call in, they
3 will give me an appointment, they will look at me,
4 they will diagnose me, or they will try to treat me.
5 I have not had a problem yet, and I don't foresee one.
6 They have been very caring and concerned individuals
7 there and they have looked at all the tests and all
8 the procedures they've done to me, they've given me a
9 colonoscopy, they've done this, they've done that.
10 They've done everything that I believe has been in
11 their purview to be able to do to try to resolve this
12 problem, and unfortunately it hasn't been able to be
13 resolved, but at least my feelings and concerns for
14 the VA are positive.
15 CHAIRWOMAN LASHOF: I'm very glad to hear
16 that, as I'm sure the Committee is.
17 Are there other questions?
18 DR. TAYLOR: Are you currently receiving
19 any treatment now?
20 SERGEANT DODD: I receive treatment once -
21 - I go once a month, or more if I need to. I'm on
22 medication every day.
23 DR. TAYLOR: And you're working now?
24 SERGEANT DODD: Yes. I own my own
25 business.
71
1 CHAIRWOMAN LASHOF: You had been in
2 Vietnam?
3 SERGEANT DODD: Yes, ma'am.
4 CHAIRWOMAN LASHOF: Had you been ill after
5 Vietnam at all?
6 SERGEANT DODD: Yes, I was, but I wanted
7 to stay in the military. I just pushed it aside for
8 a wile.
9 CHAIRWOMAN LASHOF: Are the symptoms you
10 have now similar to the ones you had then, or ---
11 SERGEANT DODD: No. No. My body aches
12 and my muscle pains are totally different. My
13 breathing difficulties are totally different. The
14 fungus that I continually get off and on, which I
15 attribute, because of my -- I've lost very close
16 friends due to this Agent Orange fungus -- I -- it
17 comes and goes on my fingernails and parts of my body,
18 but it's not -- I wasn't affected as heavily as some
19 others were.
20 CHAIRWOMAN LASHOF: Thank you very much.
21 SERGEANT DODD: Thank you.
22 CHAIRWOMAN LASHOF: No other questions.
23 Mr. Edward Bryan.
24 MR. BRYAN: Good morning.
25 CHAIRWOMAN LASHOF: Good morning.
72
1 MR. BRYAN: I have before me today facts
2 and figures on oil. You people report in the federal
3 activities related to health of Persian Gulf veterans
4 that you people found five chemicals in oil. I found
5 twenty-four different chemicals in oil, and I'm pretty
6 upset about that where the government did not come
7 through on the oil companies.
8 There is a lot of problem with the oil.
9 I'm a full-time fire fighter. Oil is hazardous, no
10 matter what type of oil you have, it's hazardous
11 before it's used, never mind after it's used, it's
12 even hazardous after it's used. The oil companies did
13 a good job of keeping it out of the public, keeping it
14 out of the government.
15 The government found five chemicals in
16 oil. It states right on page 36 of March 1995 book
17 from the government. Five chemicals. I don't buy
18 that. And I've got a report here for the Committee.
19 I'm speaking for a lot of veterans today
20 that could not attend.
21 Why wasn't this broadcast in the media?
22 Why wasn't this brought out to the public? I think
23 we'd have a lot more people here, and I think we'd be
24 here for a few days answering a lot of questions.
25 All the veterans are tired of the lowest
73
1 medical care standard there is. There's a difference
2 between civilians and the Veterans Administration
3 Hospital. It's clearly evident. And I'm living
4 proof. They said I shouldn't be here today but I'm
5 here.
6 I found more than the five chemicals in
7 crude oil. I found twenty-four hazardous chemicals.
8 There are all kinds of health effects. And in FM-8-
9 285, the nerve agent book, there are more health
10 effects. And they have a relationship of what we're
11 all complaining about. There was nerve gas over
12 there. You people are going to have to realize, there
13 was some type or form of nerve agent. Sarin gas has
14 been used widely all the way down to World War I.
15 It's just evident that you people are going to have to
16 come down to a consensus for this, for the Gulf
17 veterans. I mean, all the other veterans groups,
18 World War I, Civil War, there was no problem there.
19 The Toms River in New Jersey, the cancer
20 rate's up seven times. Boston Harbor, Chelsea, they
21 all have multiple chemical sensitivity or what's equal
22 to it is chronic fatigue syndrome. There's a problem
23 over in that area of Chelsea here in Massachusetts.
24 Rocky Flats out in Colorado, there's a
25 problem with the nuclear waste out there.
74
1 The government's going to have to do
2 something with the nuclear waste, the nuclear
3 chemicals, the DU, they're going to have to come down,
4 they're going to have to do their job. And I feel the
5 government is not doing their job.
6 The veterans' groups are talking about
7 raising the military budget for the Persian Gulf
8 illness ten billion dollars every year. Presently if
9 you compensated all the veterans, you're talking about
10 sixty billion dollars to date, sixty billion.
11 We can detect one person on the ground at
12 40,000 feet but we cannot detect one million tons of
13 nerve gas in Iraq. I think we should invade Iraq and
14 destroy everything in sight to come up with an answer
15 and get rid of that type of area that's over there in
16 the Middle East. I'm sorry but that's what we might
17 have to do.
18 I have two children. I cannot have any
19 children. I wanted nine. I'm afraid to have another
20 child. What are you people doing on the effects --
21 and I think it's related to the oil fires and nerve
22 gas. Our own uniform was full of chemicals. I didn't
23 know that until a lot of other people were speaking.
24 The DEET that they gave us to put on our
25 uniform to keep the flies away, there's a secret
75
1 formula in there called inert ingredients. We don't
2 know what's in there, but I'll bet you there's a lot
3 of health effects out of it, and we the public want to
4 know what's in those labels. We want to know what
5 we're putting on our bodies every day, either whether
6 I'm in the military, or civilian life, or even for my
7 children.
8 The Persian Gulf veterans still cannot
9 give blood. Every time you go to try, no, we don't
10 want your blood, can't give it.
11 The oil companies did a good job not
12 letting the government or the public know the hazards
13 of oil products. The veterans' hospitals are not up
14 to date on the Gulf War vets. They're just not there.
15 It's just clearly and evident not there.
16 I don't know if you people remember the
17 oil well fires, I don't know if you saw these copies,
18 I don't know if you can remember, but being a full-
19 time fire fighter in any kind of smoke you're going to
20 have all kinds of health effects. And I don't care --
21 we were over there in three miles visibility of smoke.
22 I have government reports from the Department of
23 Defense stating that we were there in three miles
24 visibility. That's health effects.
25 I was just in a fire two years ago for two
76
1 years and I had smoke inhalation. Well, it's a
2 different -- little bit different chemicals in that,
3 but -- and that come out at my blood tests at the VA.
4 It's right here. It's in my medical records. It's
5 not hidden. It's not top secret. But when I came
6 back from that Gulf War I have not been the same.
7 I've been about seventy-five percent strength. I just
8 don't feel good. I don't feel right. I've got
9 headaches. I've got problems with my stool. I got
10 nerve damage. They tell me I'm fine when I go for my
11 compensation hearing. There's nothing wrong with you.
12 Nothing. They say I'm a walking time bomb on another
13 exam.
14 Do you have any questions?
15 CHAIRWOMAN LASHOF: Are there questions?
16 DR. TAYLOR: Yes. How long was your tour
17 of duty in the Gulf?
18 MR. BRYAN: Four months.
19 DR. TAYLOR: Four months. And ---
20 MR. BRYAN: Plus I did a month before,
21 December of '90, a secret operation down in Savannah,
22 Georgia, loading the ships.
23 DR. TAYLOR: And you went to the VA and
24 received treatment for ---
25 MR. BRYAN: Yes. I'm still presently
77
1 right now, it's been four years now, and they're just
2 finding major problems, and I'm concerned about that.
3 This is four years later.
4 I'd like to give you this package here.
5 CHAIRWOMAN LASHOF: Yes. That will be
6 fine.
7 I just wanted to point our, I think you
8 held up a report that you referred to as our report,
9 and I think that was the ---
10 MR. BRYAN: Federal activities related to
11 the health of Persian Gulf veterans?
12 CHAIRWOMAN LASHOF: Yes. That's the
13 coordinating board's report.
14 MR. BRYAN: Well, even still, you people
15 should all ---
16 CHAIRWOMAN LASHOF: Our role is to look at
17 all of these, and we will be dealing with all of that.
18 A copy of our interim report is available at the desk
19 outside.
20 MR. BRYAN: And I want to let the public
21 know if they're going to put it in the paper that
22 Russia has been dumping nuclear waste in the oceans
23 for years and we want to stop that. Nuclear waste,
24 that could be another chemical that's in that area.
25 CHAIRWOMAN LASHOF: Thank you very much.
78
1 MR. BRYAN: Thank you.
2 CHAIRWOMAN LASHOF: Diane Dulka.
3 MS. DULKA: Good morning.
4 I spoke to you in October. Let me refresh
5 your memories. I'm sure you don't remember why I was
6 here.
7 During my last visit many of you seemed
8 concerned about the issue of benzene. They were
9 spraying the Iraqi prisoners with it over in Saudi.
10 Many of you were unaware of this practice.
11 Has the Committee done any investigating
12 into it or learned anything new about it?
13 CHAIRWOMAN LASHOF: Yes. Andrea, do you
14 want to -- we did look into it, and it was lindane.
15 DR. TAYLOR: It's lindane, yes. And it's
16 a pesticide. There are some American industrial
17 hygiene studies that show that there may be some risk
18 to persons exposed if they're not wearing the proper
19 protective equipment.
20 MS. DULKA: Right. Now, were you aware
21 that the MP's were spraying these in enclosed tents
22 with no masks or protective gear?
23 DR. TAYLOR: No, I wasn't aware of that.
24 MS. DULKA: Powdered benzene in
25 pressurized cans.
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1 DR. TAYLOR: No.
2 MS. DULKA: That's one of the issues I
3 wanted to bring up here today.
4 It is an FDA-approved substance for the
5 purpose of delousing prisoners, but it also has very
6 strict regulations on its proper use. Now, the MPs
7 were never instructed on proper use.
8 I also went back and did some research on
9 benzene, which lindane is a form of benzene. Now, I
10 went back, and all the service personnel were inhaling
11 benzene through the oil fires also. Benzene is a
12 large chemical in the oil.
13 According to Dr. -- it's Aksoy -- "Benzene
14 carcinogencenity. Benzene toxicity can occur anywhere
15 from minutes after inhalation to over several years of
16 low exposure inhalation. Benzene toxicity produces
17 initial complaints such as headache, dizziness,
18 nausea, vomiting and loss of appetite."
19 Many of these symptoms were experienced by
20 our service personnel while in the Gulf.
21 In the book he lists study after study
22 which as proven benzene exposure causes cancer in many
23 forms. Benzene has become a major concern for anyone
24 in the Gulf during the war, whether it be a veteran or
25 a volunteer organization.
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1 As I stated on many occasions, the VA is
2 not including cancer statistics in their figures. I
3 have enclosed a letter from Susan Mather of the VA.
4 Her letter states: "Cancer caused by exposure does
5 not occur until between five and thirty years after
6 exposure." This is the basis by which the VA is
7 denying Gulf War veteran claims when they have cancer.
8 Now we have passed the five-year point, so
9 one would assume that the Gulf War veteran who
10 develops cancer now would have a valid claim and be
11 approved. Now the VA is stating that these veterans
12 no longer have a claim because they didn't produce
13 symptoms before the two-year presumptive period.
14 Therefore, the VA is not recognizing any
15 cancer case whatsoever, as far as the Desert Storm
16 veterans are concerned.
17 Now, referring back to the five- to
18 thirty-year window which Susan Mather stated in her
19 letter. I'm not really sure where this information
20 was received, but according to the doctor in the book
21 that I read, which I've enclosed copies of it, and
22 several other experts that are also in the book, after
23 toxic exposure to benzene, cancer can develop as soon
24 as four months after exposure.
25 I believe the five- to thirty-year window
81
1 that she's referring to refers back to Agent Orange
2 laws and radiation poisoning, which has no bearing on
3 a Desert Storm veteran. And I don't understand why
4 they're using Agent Orange laws to evaluate claims by
5 Desert Storm veterans when Desert Storm veterans have
6 specific laws for them.
7 So, it gets a little bit confusing.
8 Okay. Now getting back to the VA
9 statistics. Some very disturbing information was
10 brought to my attention. According to a reliable VA
11 source, the VA is now including all Gulf War era
12 service members in their statistics, therefore
13 slanting the figures with people who were not even in
14 the Gulf. Now, we are now five years after the year.
15 Out of all of the studies and research and
16 medical care given to these veterans, I have not seen
17 anyone go after the cause of these problems. The
18 veterans have been treated with drugs to relieve their
19 symptoms. I have not seen any program which tests the
20 fatty tissue of these veterans.
21 Has there been anything that tests a fatty
22 tissue of any of these veterans that anybody's aware
23 of? No?
24 DR. CUSTIS: Not that I'm aware of.
25 MS. DULKA: Okay. I didn't think there
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1 was. Okay.
2 Is there any study being done to detoxify
3 these veterans that you're aware of? No?
4 DR. TAYLOR: I'm not aware of anything.
5 MS. DULKA: Okay.
6 DR. TAYLOR: I'm not certain I understand
7 what you mean by "detoxify."
8 MS. DULKA: Detoxify. Remove any chemical
9 agent in their body, or try to. Okay. No? Nothing?
10 Okay.
11 If there was a chemical accident, say, at
12 Dow Chemical, persons involved in the accident would
13 immediately be put through a detoxification program.
14 These chemicals would be removed from the body; damage
15 would be limited because of the amount of time that
16 the chemicals would have remained in the body.
17 Now, because these people are veterans
18 they are treated like second class citizens. Any
19 other group would have had answers by now and would
20 have been treated years ago.
21 In closing I would like to let you know
22 that I am tired of waiting for the government to
23 research this to death. I have taken on a study of my
24 own which has started a pilot program to try to
25 detoxify some of these veterans. I will publish the
83
1 results when the study is complete. At least it is a
2 start.
3 There is one more point I would like to
4 make. Before the Gulf War I was a wife, a mother and
5 a part-time realtor. Since the Gulf War I have become
6 mother, father, widow, fund-raiser, researcher,
7 veteran advocate and many more. Why has it become the
8 veterans' responsibility to provide complete proof of
9 any claim made to the VA?
10 In my case, for example, I've had to
11 become a cancer expert, benzene chemist, along with
12 learn and interpret Gulf laws and try to close some of
13 the VA loopholes which they hop through so frequently.
14 The veterans have become the police for the VA.
15 Thank you.
16 CHAIRWOMAN LASHOF: Thank you.
17 Any questions?
18 DR. TAYLOR: You're saying that you've
19 started your own study on detoxify. I guess one
20 question that I have is, are you looking at the
21 specific chemical benzene or ---
22 MS. DULKA: No.
23 DR. TAYLOR: --- are you looking at ---
24 MS. DULKA: All chemicals.
25 DR. TAYLOR: All chemicals.
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1 MS. DULKA: All chemicals, toxins and
2 pesticides that they were exposed to in the Gulf.
3 DR. CUSTIS: What's the technique you're
4 referencing?
5 MS. DULKA: They're using a
6 sauna/oil/vitamin/exercise program. It can go
7 anywhere from two weeks to forty-five days.
8 DR. CUSTIS: That's a detoxifying process?
9 MS. DULKA: I'm sorry?
10 DR. CUSTIS: And that is a detoxifying
11 process you're describing?
12 MS. DULKA: Yes. It's used in Europe.
13 They're doing it now with the Chernobyl children that
14 were exposed to radiation. They're using it in France
15 and Italy and Canada.
16 CHAIRWOMAN LASHOF: Do you have
17 information on that process?
18 MS. DULKA: Not with me, no, I don't.
19 CHAIRWOMAN LASHOF: Would you send that to
20 the Committee, please?
21 MS. DULKA: Sure.
22 CHAIRWOMAN LASHOF: We would like to see
23 it.
24 MS. DULKA: I will. I sent my first
25 veteran out a week-and-a-half ago. He's the first one
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1 to go through the program.
2 CHAIRWOMAN LASHOF: Where is the program
3 being carried out?
4 MS. DULKA: It's out in California.
5 CHAIRWOMAN LASHOF: Pardon? In
6 California?
7 MS. DULKA: It's in California, yes. I've
8 set up housing out there through other veteran
9 families so that the veterans can stay in other
10 veterans' homes while they're there going through the
11 programs.
12 CHAIRWOMAN LASHOF: Well, we would
13 appreciate receiving information about the program,
14 where it is, what's involved, and so on.
15 MS. DULKA: Sure.
16 CHAIRWOMAN LASHOF: Anything else?
17 DR. TAYLOR: Have they seen any results
18 from that?
19 MS. DULKA: Oh, no. We just started a
20 week-and-a-half ago. Oh, no. It's taken me that long
21 just to be able to put it together. I started working
22 on it in September and just to try to even get
23 funding, because it's all got to be privately funded.
24 DR. TAYLOR: The veterans that are in your
25 program or that are coming into your program, are you
86
1 -- have any of them been diagnosed with any specific
2 cancer or ---
3 MS. DULKA: No. If they ---
4 DR. TAYLOR: --- symptoms, or ---
5 MS. DULKA: No. If they've been diagnosed
6 with any cancer they cannot participate in the
7 program. Anything else, any type of kidney failure or
8 urinary tract problem or cancer, they cannot go
9 through the program. Anything other than that they
10 can. The program is modified, it's medically
11 monitored. There is a Gulf War protocol set up,
12 medical protocol.
13 CHAIRWOMAN LASHOF: Okay. Thank you very
14 much.
15 MS. DULKA: Thank you.
16 CHAIRWOMAN LASHOF: John Chestna?
17 MR. CHESTNA: My name is John Chestna. I
18 was stationed in Saudi Arabia from March 7th -- August
19 17th of 1990 to March 28th of 1991. I'm just going to
20 read a letter that I wrote to the VA Regional Office,
21 and also I sent one to Mr. Clinton, Joseph Kennedy,
22 Boston Globe, Senator Donald Riegle, and WBZ Channel
23 4.
24 "At present I am awaiting the outcome of
25 my compensation claim for Persian Gulf Syndrome which
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1 was filed on October 17th, 1994. I'm a Persian Gulf
2 veteran deployed to Saudi Arabia-Kuwaiti theater with
3 1st Combat Engineer Battalion, Support Company,
4 Utility Platoon, from August 17th, 1990, to March
5 28th, 1991.
6 "During this time I had been exposed to
7 many things, including the handling and long-term
8 exposure to petroleum products and smoke, pesticides,
9 and strongly believe chemical weapons as well. The
10 anthrax and botulinum vaccines and the bromide pills
11 which were stated as being experimental were
12 administered to myself and my fellow Marines.
13 "There has been many drastic changes in my
14 health during my service in the Persian Gulf and since
15 my return home, all of which have been documented in
16 either military, VA or local hospital health records.
17 This illness which I have been stricken with has
18 stunted my progress in pursuing my career in music as
19 a musician due to my memory loss, shooting pains in my
20 arms, shoulder pains, joint pains, muscle aches, and
21 being in a constant state of fatigue.
22 "These and many other symptoms are also
23 the cause of being laid off from a job --" As it
24 stands now I'm unemployed; I've lost three jobs
25 because of this. "-- and the continual missing of
88
1 days from work due to the constant decline of my
2 health. This prevents me from even spending quality
3 leisure time with my fianc�e and daughter, and I am no
4 longer able to completely physically engage in the
5 sport of hockey or the league in which I belonged."
6 And this letter was July 4th, 1995. Since
7 then my health has been on a continued downhill run.
8 CHAIRWOMAN LASHOF: Are you under medical
9 care now ---
10 MR. CHESTNA: Yes.
11 CHAIRWOMAN LASHOF: --- with the VA or
12 private?
13 MR. CHESTNA: I'm under Dr. Gordon's care.
14 CHAIRWOMAN LASHOF: Under Dr. Gordon's
15 care.
16 Are there other questions?
17 What was your occupation?
18 MR. CHESTNA: I was purifying water,
19 ma'am. If I can show you a few pictures here?
20 (Photos shown to the Committee.)
21 These are kind of bad pictures of rashes
22 that I've had. And -- I'm not going to disrobe, but
23 I have rashes down my sides right now.
24 That is -- that's what I was doing. Water
25 purification.
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1 CHAIRWOMAN LASHOF: Purification in
2 Kuwait, and ---
3 MR. CHESTNA: This is the oil that came
4 in.
5 (Pause.)
6 These are also pictures of the smoke.
7 That's during the day. This is also during the day.
8 (Pause.)
9 I believe this is a depleted uranium
10 weapon.
11 CHAIRWOMAN LASHOF: Okay. Thank you very
12 much. We'll look at them and return them to you.
13 MR. CHESTNA: Thank you.
14 CHAIRWOMAN LASHOF: If there are no other
15 questions, we will take a break and resume the meeting
16 at 10:45 so that we -- as you know, today is devoted
17 to hearing a discussion and presentations about the
18 various federally-funded research dealing with the
19 environmental hazards, and we have a series of
20 presentations by the research centers about their
21 activities, and the rest of the day will be devoted
22 mainly to that, with some discussion at the end of the
23 day on the outreach from the Department of Veteran
24 Affairs.
25 But we'll take a break now until till
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1 10:45.
2 (Whereupon, a recess was taken.)
3 CHAIRWOMAN LASHOF: There are some others
4 who have asked to testify, so we will take a few
5 minutes before we resume the agenda as printed and
6 allow them to do so.
7 The first one is Mr. Larry McInnis.
8 MR. McINNIS: Good morning, Madam Chairman
9 and panel. My name is Laurance McInnis. I live in
10 Hull, Massachusetts. I'm a former Marine, active. I
11 stayed in the Reserves more or less as a hobby. Used
12 to go one weekend a month, play some cards, have a
13 couple of beers, meet some new friends, talk about
14 different things, and do some training. And at that
15 time I thought it was good training, I thought it was
16 meaningful, and I could pass on a lot of information.
17 Well, little did I realize that our one
18 weekend a month and two weeks during the summer turned
19 into a major deployment over in Saudi Arabia, and I
20 was probably one of the few grandfathers over there
21 with General Schwarzkopf.
22 I was a truck driver over there, heavy
23 equipment, and we delivered medical, water, supplies,
24 mostly ammo.
25 January 17th our whole thing changed. We
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1 were assigned to the 82nd Airborne. 82nd Airborne
2 were not going to jump in, and they didn't have the
3 equipment to bring them in in carriers, so they turned
4 our company and another small, medium truck company
5 from Teaneck, New Jersey, into a mechanized regimen,
6 and we sandbagged our gas tanks, we sandbagged our
7 trucks, our floor boards, our beds, put a .50 caliber
8 machine gun on the front, two squads of 82nd Airborne,
9 fully armed, ready for combat in the rear, and across
10 the desert we went into Iraq. We spent three-and-a-
11 half weeks in Iraq.
12 I come out of there with an injured back,
13 which I still have, which I've been compensated for
14 with twenty percent. Upon returning home I was put on
15 medical hold. After the rest of the company was let go
16 I was on medical hold for over two years, which made
17 me like a rip-roaring maniac. In fact, I was so bad
18 I got in an argument with a chaplain on the stairs of
19 the chapel up at Fort Devens, and that's not like me.
20 Little did I know that I was a victim of
21 PTSD, which I've been told that it's pretty deep, it's
22 pretty serious, and it's a hundred percent.
23 Also I have spent time in many of the New
24 England VA's from White River Junction to Newington,
25 eight months in Northhampton for multiple chemical
92
1 sensitivity, respiratory problems, bleeding stools.
2 I could go on and on and on. I'd sound like all the
3 other veterans here, and we all have similar problems.
4 My problem has just been diagnosed from a
5 cyst on my pituitary gland to a tumor.
6 I had plans to retire and tour the country
7 with my wife. My plans have kind of like gone down
8 the drain.
9 What I'd really like to say is I'd like to
10 speak for the other veterans. We first started the
11 post Gulf War Registry at the Jamaica Plain VA in
12 Boston. You could walk in at any time and you could
13 get your examination.
14 A lot of the younger men -- I know I only
15 have three minutes -- I'm going to go on a little bit
16 longer. I'm sorry. -- but a lot of the younger
17 troopers, they were asking me how can you get so bad
18 in a hundred-hour war? It wasn't a hundred-hour war;
19 it was a little bit longer than that. It come out in
20 the newspapers a hundred-hour war.
21 How can people get so screwed up in a
22 hundred hours, right? We lost, even if it was one
23 person, we lost troopers over there. We had feelings
24 over there. We seen things over there that people
25 have never seen before. We experienced things over
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1 there that people never experienced before.
2 What I'm saying is on the registry when we
3 come home we could walk in any time and you could have
4 your examination and they'd tell you it was stress, go
5 down to Court Street. That's what they told you.
6 Right? They had no inclination that it was anything
7 else involved.
8 Later on we got a little teeny program
9 going through the Vet center in Boston and a Miss
10 Shirley Jackson from the VA, and what we did is we put
11 together a thing on Saturdays where a lot of the
12 doctors from the VA volunteered their time to be there
13 on Saturday, and we ran this two Saturdays -- not in
14 a row -- but two Saturdays within a certain time
15 period, and we had over a hundred veterans, and
16 everybody had a certain time to come in, and we had a
17 hundred veterans on a Saturday -- over a hundred
18 veterans on each one of those Saturdays compared to
19 this dribbling in thing.
20 Now if you go over to the VA and you ask
21 to get an examination to register for the Persian Gulf
22 Syndrome it takes you three months. Why does it take
23 three months? The reason that I understand is that
24 there's only one doctor over there one day a week
25 doing these examinations. Why is there only one
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1 doctor over there doing these examinations?
2 You know, it's funny, we seem to have
3 money for different things. I picked up a small piece
4 in the paper the other day about our former Secretary
5 of Defense Dick Cheney, and there was something about
6 where he was the new CEO/President of a construction
7 unit, and all of a sudden they landed a contract over
8 in Bosnia to build a barracks for $328 million. And
9 this little teeny piece in the paper really struck me
10 kind of strange.
11 If we can spend $328 million on a barracks
12 which is an A No. 1 target for terrorists, right, and
13 not only that, but we have units over there, we have
14 engineer units that can also build this barracks for
15 the money that they are getting for putting in their
16 24-hours duty, right, we got to go outside and spend
17 $328 million where we can better use that money for
18 doctors and to find out really what has gone awry on
19 these younger troopers.
20 Myself, like I say, I'm older, right, and
21 I've come to a reasoning within myself that there's
22 really not too much left, and I'm sorry to take up
23 your time, but I had to say this.
24 Thank you.
25 CHAIRWOMAN LASHOF: Thank you.
95
1 Are there any questions?
2 MR. CASSELLS: Mr. McInnis, which VA
3 hospital are you referring to when you say it's one
4 physician on one day per week?
5 MR. McINNIS: What I understand it's the
6 Jamaica Plain VA. I was there yesterday myself and
7 now they've got me going to see a nutrition doctor
8 because when I come home from the Gulf I weighed 155
9 pounds, injured my back, I've had two operations on my
10 back since I've been home, and I have put on like a
11 hundred pounds. I contribute it to inactivity and I
12 don't eat that much. You can look at me and laugh,
13 but it's true, I don't eat that much.
14 I'm also on medication. I'm on heavy
15 doses of Prozac and I can't even think of the other
16 three.
17 MR. CASSELLS: You said you had been
18 diagnosed as a cyst on the pituitary, perhaps a tumor.
19 What diagnosis are you carrying now? For what are you
20 being treated?
21 MR. McINNIS: I'm being treated for PTSD
22 at Court Street and also at JP and Boston, and I am
23 being treated for prostate, I'm being treated also for
24 the tumor on my -- the pituitary, bleeding from the
25 rectum. It's a horror list, it really is. I'd just
96
1 be -- I do not have anything written. That was
2 another one of my complaints this morning is that I
3 don't think there was enough advertisement on this
4 Committee meeting going out to the -- I look around
5 and I see doctors and whatever and I see a few
6 troopers out there, and I would have liked to have
7 seen something posted at the VA, which I didn't.
8 The Vet Center last night -- I go once a
9 week to the Vet Center in Boston, and it seems to be
10 my only relief is talking to other vets that were
11 actually in similar situations, and it's helpful.
12 MR. CASSELLS: Thank you.
13 MR. McINNIS: I'm sorry. Thank you.
14 CHAIRWOMAN LASHOF: Thank you. Thank you
15 very much.
16 Bobby Lawson?
17 MR. LAWSON: Hello. Good morning. My
18 name is Robert Lawson. I'm a Persian Gulf veteran
19 stationed at 23rd Field Artillery in Germany. I was
20 sent to the Gulf on January 1st, 1991, to June 16th.
21 Upon my return home my parents noticed a different
22 variety of things wrong with me and I went to
23 Manchester VA to meet with Dr. Victor Gordon who has
24 been treating me ever since.
25 I've been a variety of different VA
97
1 hospitals. One of the VA hospitals which I was seen
2 by Claudia Miller, an environmental specialist down in
3 Houston, Texas, and I was diagnosed with MCS and
4 organic brain syndrome and which I was also put on
5 Prozac saying nothing's wrong with me. Upon my return,
6 Dr. Victor Gordon and my mother took me off of it
7 saying it's not curing the problem.
8 Since my return home from April 13th,
9 1992, I have been to at least ten different physicians
10 and no one can still tell me what's wrong with me.
11 I've been experiencing the following things since my
12 return and type of financial assistance from the VA.
13 Fatigue, depression, memory loss, back pain,
14 headaches, night sweats, nightmares, unexplained
15 bruises and rashes, joint/muscle pain, chronic
16 diarrhea, stomach pain, sensitivity to odor and
17 smells.
18 As I sit here today explaining my tour of
19 duty of the war, I realize that my personal war is not
20 over because I don't have my health. Many veterans
21 like myself are sick and in need of a reason why, yet
22 our government chooses to ignore this problem.
23 Thank you.
24 CHAIRWOMAN LASHOF: Thank you.
25 Are there any questions for Mr. Lawson?
98
1 MAJOR KNOX: Are you receiving any
2 compensation from the VA at this time?
3 MR. LAWSON: No, I'm not.
4 MAJOR KNOX: Were you given a referral to
5 one of the other VA's after you had your Persian Gulf
6 physical?
7 MR. LAWSON: I've been everywhere. I've
8 been flown to Texas. Senator Bob Smith flew me there.
9 I've been all over the place. Just waiting. I get a
10 letter in the mail every day. We're looking at your
11 file. I've already been diagnosed with two things
12 already.
13 DR. TAYLOR: That's the multiple chemical
14 sensitivity.
15 MR. LAWSON: Which is Claudia Miller. And
16 I've seen by Dr. Thane, organic brain syndrome, which
17 I believe is brain damage, my left optical region.
18 DR. TAYLOR: Where were you stationed in
19 the Gulf?
20 MR. LAWSON: Two-Third Field Artillery in
21 Germany.
22 DR. TAYLOR: And what were your
23 responsibilities?
24 MR. LAWSON: I was a tanker, front line.
25 DR. TAYLOR: Did you notice any specific
99
1 environmental exposures similar to what has already
2 been ---
3 MR. LAWSON: Upon our arrival there there
4 was dead camels, dogs, cats.
5 DR. TAYLOR: Same thing.
6 MR. LAWSON: All over the place.
7 Unbelievable.
8 CHAIRWOMAN LASHOF: All right. Thank you
9 very much.
10 The next item on our agenda is a
11 discussion of our Clinical Syndromes Panel meeting in
12 which we were planning to report on that meeting to
13 the rest of the Committee. Unfortunately, a number of
14 members of our Committee were unable to attend today's
15 meeting and actually of those of us that are here,
16 most of us were at the meeting in San Antonio. But I
17 think we should spend some time reviewing the summary
18 that has been prepared, and it's in your book at Tab
19 B, and there's a brief summary that's there prepared,
20 and I don't really want to read the whole summary.
21 But just let me go through it relatively
22 briefly and let us focus on the recommendations.
23 The first presentation we heard in San
24 Antonio in addition to, of course, the testimony from
25 the veterans, was a presentation concerning multiple
100
1 chemical sensitivity. We reviewed the case definition
2 of multiple chemical sensitivity and, unfortunately,
3 there's still no real consensus on a case definition,
4 although there are several proposed, and some general
5 agreement among those that have been looking into this
6 issue.
7 The symptoms are relevant to many
8 different organ systems, and including central nervous
9 system symptoms being fairly common.
10 The points were made in the testimony that
11 there's marked overlap between the systems of MCS and
12 what has been referred to as undiagnosed illnesses in
13 the Gulf War veterans. A number of people who were
14 testifying pointed out that many of the symptomatology
15 presented in the CCEP are very similar to that in
16 multiple chemical sensitivity and it was their
17 position that this is what many of the Gulf War
18 veterans were suffering from.
19 We had some discussion about diagnostic
20 procedures and the fact that there is no good way
21 other than by history to make a diagnosis of multiple
22 chemical sensitivity. There's very little data
23 available as to its prevalence in the general
24 population. It's prevalence in the Gulf War veterans,
25 we have only anecdotal reports on people who have
101
1 consulted, Dr. Claudia Miller, who presented. She's
2 seen about a hundred patients at the Houston VA and
3 she reported on her first fifty-nine consultations.
4 We listened to discussions of treatments
5 and the major statement, I think, from Dr. Miller
6 rather summed it up, that we really don't know how to
7 treat multiple chemical sensitivity.
8 We'll be dealing with somewhat more on
9 this issue in some of our presentations today on the
10 environmental issues.
11 And it was pointed out that there is
12 ongoing research being supported, and as I say, we'll
13 be hearing from that today.
14 I think the issue before us is what
15 further steps we would like staff to take in regard to
16 multiple chemical sensitivity and its relationship.
17 On your tab we've indicated that staff
18 should certainly continue to evaluate the East Orange
19 VA research on MCS, as well as continuing to keep
20 abreast of the peer reviewed medical literature to
21 determine if trials or validated diagnostic methods
22 and beneficial treatment techniques are, indeed,
23 published.
24 Of those who were at the meeting, are
25 there other things that you would like to add to this
102
1 or suggestions that you feel need to be followed up
2 on?
3 Then I'll ask those who weren't there if
4 they have further questions.
5 MAJOR KNOX: I think the staff has done a
6 very good job of summarizing that.
7 CHAIRWOMAN LASHOF: Are there any
8 questions from -- Don, you weren't there, and Art
9 wasn't there, right?
10 DR. CAPLAN: I was not.
11 CHAIRWOMAN LASHOF: Do you have any
12 further questions, or is this pretty well -- any areas
13 that you'd like to emphasize we look further into?
14 Okay.
15 The next area that we had presentations on
16 was on chronic fatigue syndrome. Again, the summary
17 in your book, we go through the case definition and
18 CDC had a consensus case definition for chronic
19 fatigue syndrome. And there does appear to be a
20 marked overlap of the symptoms between chronic fatigue
21 syndrome and undiagnosed illnesses. And as you
22 remember at the San Francisco meeting when CDC
23 presented their data from their first initial study of
24 the Pennsylvania veterans they felt that the
25 similarity was great and that it was -- and they
103
1 postulated that we were looking at a form of chronic
2 fatigue syndrome in the veterans.
3 Again, it's a diagnosis by exclusion.
4 Again, there are no confirmatory lab tests, and
5 clinical evaluation as recommended by CDC is listed
6 here.
7 CDC has come up with some estimate of its
8 incidence in the general population, coming up with an
9 estimate of 98 cases per hundred thousand, or a tenth
10 of a percent in the general population. This was from
11 a study in Seattle in 1995, and which was fairly rigid
12 or stringent criterion. It may, indeed, be higher
13 than that in the general population, especially, of
14 course, among those who seek care.
15 The prevalence of chronic fatigue in the
16 Gulf War veterans is really unknown at this time. If
17 one looked at the first 10,000 patients evaluated at
18 the CCEP, it was only .42 percent that met the 1994
19 CDC case definition, but even at that level, that's
20 four times greater than the population survey that CDC
21 had done in the past.
22 We should have further information on that
23 in the next week or so when DOD will be releasing
24 their next analysis of the CCEP. That should be
25 released on April 2nd, I believe, roughly.
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1 MS. NISHIMI: I don't believe they've
2 announced a firm date yet.
3 CHAIRWOMAN LASHOF: I see. Okay. I'm out
4 of order.
5 There was some discussion of treatment
6 techniques. Dr. Ganns presented several approaches to
7 therapy, including the use of anti-depressants and
8 cognitive behavior programs.
9 Again, there is ongoing research supported
10 by DOD and the VA. VA is funding research on CFS
11 among patients enrolled in the registry and at the
12 Environmental Research Center in Boston and in East
13 Orange, and we'll hear more about that today when we
14 hear that testimony.
15 Again, the next steps, the staff will
16 again continue to evaluate the research and keep
17 abreast of what research is going on, as well as the
18 peer reviewed literature.
19 Are there other issues that anyone feels
20 have come up that we need to further pursue?
21 (No response.)
22 Are there any addition ---
23 Yes, Art.
24 DR. CAPLAN: Just one thing that's come up
25 a number of times about the chemical exposures, less
105
1 so with chronic fatigue, but it's just asking the
2 staff to make sure that the research centers that are
3 looking at these and the other syndromes are doing
4 what they can to monitor cancer rates, complications,
5 other things that people think may be associated with
6 the multiple chemical sensitivity diseases, and then
7 in some sense to make sure that they're getting all
8 the diagnostic and investigatory studies done that
9 might help establish an agent.
10 I mean, we've heard a few times about
11 fatty tissue biopsies, PET scans and so on, and it
12 would be, I think, important for the staff to tell us
13 whether that's practical, possible, useful, what the
14 state of the art there is.
15 So, more the associated claims that have
16 been made about other consequences. I'm thinking here
17 more the multiple chemical sensitivity than I am the
18 CFS, but for both. But for both.
19 CHAIRWOMAN LASHOF: Thank you. Staff will
20 note that.
21 We then had an excellent presentation on
22 fibromyalgia, its case definition, again, an overlap
23 of symptoms with the undiagnosed illness in the Gulf
24 War veterans. Again, there are no confirmatory lab
25 tests. Prevalence in the U. S. population is
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1 estimated to be between one to two percent, and the
2 prevalence of fibromyalgia in the Gulf War veterans is
3 unknown at this time. And much of the prevalence for
4 any of these conditions we really won't know very much
5 about until the larger scale epidemiologic studies are
6 completed.
7 Treatment techniques are summarized here
8 and include decreasing pain, mainly symptomatic.
9 And there is ongoing research at the
10 Portland VA and we'll be hearing from them this
11 afternoon.
12 The recommendations are similar to the
13 others, that we continue to keep abreast of the
14 research going on that we know has been funded by DOD
15 but that we also try to keep abreast of the peer
16 review medical literature and keep in touch with the
17 scientists that are working in this area whom I'm sure
18 will keep us informed of any new developments.
19 Are there any additions to that summary
20 that any of the people who were there would like to
21 ask?
22 If not, any other suggestions that anyone
23 has?
24 All right. We -- the next area that was
25 covered at our clinical syndrome panel was a
107
1 presentation from Dr. Edward Hyman on bacteria in the
2 urine. He talked about a technique that he has
3 developed for identifying a form of streptococcal,
4 systemicoccal disease, he calls it, and a methodology
5 for culturing the organisms which he really did not
6 present in any detail, described his methodology,
7 merely stated that he was using an earlier methodology
8 that most laboratories weren't using. And he claimed
9 to be able to make a diagnosis in veterans of this but
10 he didn't present any systematic study that one could
11 draw any conclusions about the percentage of people
12 who were infected.
13 He has been treating patients with
14 antibiotics and claims to have success.
15 There has been an issue concerning the
16 funding of his research. Actually, he had made
17 contacts with his congressman and there was money
18 initially appropriated or has been appropriated in the
19 DOD budget to fund further work of Dr. Hyman but DOD
20 has not released that funding because he has not had
21 a protocol approved by an institutional review board
22 and they are not willing, appropriately so, I believe,
23 to release funding for any studies that haven't been
24 through an institutional review board and have been
25 approved from both their scientific and ethical
108
1 aspects, and he's been offered many opportunities and
2 will continue to be offered the opportunity to present
3 a protocol that has received approval from any IRB
4 anywhere in the country that he can find.
5 And as far as that goes, we will just keep
6 abreast of whether or not he is funded and whether he
7 is able to obtain approval.
8 Anyone want to add anything to that? Any
9 other suggestions?
10 DR. CUSTIS: I was just wondering, was Jay
11 Sanford's participation limited to helping him with
12 his protocol, or is he, too, involved in the search
13 for this bacteria?
14 CHAIRWOMAN LASHOF: He has not -- as I
15 understand it, he's been one that's been -- he's --
16 that Dr. Hyman's referred to him to get his
17 consultation and to help him with the protocol, but he
18 has not been involved in the research. I believe
19 that's correct. Is that correct? Yeah. Dr. Sanford
20 is obviously well known.
21 Dr. Garth Nicholson presented his theories
22 concerning the etiology of the Gulf War veterans
23 illness being due to mycoplasma infection. Dr.
24 Nicholson is a Ph.D. and his work primarily in cancer
25 research, and that's his area of expertise, and he is
109
1 a professor at the University of Texas but has gotten
2 -- taken up this issue, as I would gather, really a
3 side issue from his mainstream funded research which
4 is in cancer biology.
5 He presented information about cases that
6 he has seen and his being able to identify mycoplasma
7 species and has also reported this in the literature.
8 He has developed a new gene tracking test for this and
9 has treated patients with doxycycline and other
10 antibiotics and claims to have results.
11 Data on the prevalence of this infection
12 in the U. S. population is estimated primarily to be
13 seen among homosexual men with AIDS and in HIV-
14 positive. Asymptomatic homosexuals also have had
15 relatively high rates. It has not been seen as much
16 in IV drug users, HIV-positive drug users, or
17 hemophiliacs.
18 The prevalence of mycoplasma in Gulf War
19 veterans is not known. Dr. Nicholson has not carried
20 out any kind of random survey to identify it in a
21 large sample; rather, he's worked with specific people
22 who've come to him with the symptomatology and have
23 been referred to him and whom he feels he has been
24 able to identify this organism.
25 He has also applied for funding under the
110
1 DOD call for proposals. However, that has not been
2 approved, his funding had not been approved, and he
3 was still pursuing other sources of funding. CDC has
4 contacted him and have offered to send him samples to
5 perform a case control study where they could send him
6 blinded samples from people with illness and without
7 illness. He has felt that he doesn't have the lab
8 facilities to do that yet, but at the time of our
9 meeting in San Antonio there were still -- he was
10 still in contact with CDC and CDC, Dr. William Reeves,
11 have -- does want to pursue this with him, and
12 hopefully we will be able to have a more controlled
13 study from which better conclusions could be drawn.
14 We feel that the next step here is to
15 monitor the status of his potential collaboration with
16 CDC. We also will be reviewing other relevant
17 mycoplasma research and see whether any other groups
18 have undertaken research to confirm these findings.
19 Are there any other additions that anyone
20 would like to make concerning that?
21 Yes, Art.
22 DR. CAPLAN: Joyce, one of the things that
23 comes up from your hearing is that there clearly are
24 a lot of people with ideas about what might be causing
25 Gulf War illness syndromes from chemical sensitivity
111
1 to the bacteria to the mycoplasma theories, and I
2 think it's important that we urge staff to seek
3 comment and review as we can from independent sources,
4 because one thing I think the committee must do is
5 make sure that people understand why certain
6 diagnostic or treatment approaches that might be ideas
7 worthy of consideration aren't or are not being
8 aggressively followed. In other words, we don't want
9 to let the issue lie of why is somebody's idea not
10 being actively pursued.
11 And, so, to the extent we can do it, while
12 we're not a peer review body or an IRB, for that
13 matter, I'd like to see a section that draws that
14 together, because I think one of the sources of
15 distrust is that there's an issue that constantly
16 arises about whether a good idea is being squelched by
17 the scientific establishment or by the Defense
18 Department or whoever it is, and we need to make sure
19 that we go at that head on and explain here's where
20 the idea is, here's why people are cool to it, here's
21 what needs to be done to get it funded as responsible
22 stewards of taxpayer money on any scientific research
23 project would be expected to do, and so people are
24 assured that these ideas are not just being rejected
25 because they're being squelched.
112
1 CHAIRWOMAN LASHOF: I think that's a very
2 valid point, and it is one that I have talked with
3 staff about our need to know what kind of proposals --
4 as you say, we're not a peer review group, but we do
5 need to know what is the process DOD has been using in
6 putting out its RFPs, what kind of proposals have they
7 gotten, what process are they using for peer review,
8 what kind of feed back goes back to the scientists who
9 are turned down, and we need to have that analyzed for
10 us and presented to us, and staff are pursuing that at
11 this point.
12 Are there any other -- I think that --
13 that, I think, summarizes our clinical syndrome
14 meeting.
15 Okay. If there are no other comments on
16 that, we're just about on time, and we're ready to
17 move ahead with the federally funded research on
18 environmental hazards from the Boston group, the
19 Boston environmental hazard group.
20 (Pause.)
21 CHAIRWOMAN LASHOF: Dr. White, Dr.
22 Ozonoff.
23 (Pause.)
24 Who's going to start, Dr. White or Dr.
25 Ozonoff?
113
1 DR. WHITE: Dr. White's going to start.
2 CHAIRWOMAN LASHOF: Dr. White, welcome.
3 Welcome to both of you.
4 DR. WHITE: Thank you.
5 CHAIRWOMAN LASHOF: And would you just
6 tell us a little bit about your background and then
7 just launch into what you're doing.
8 DR. WHITE: I'm the Research Director of
9 the Boston Environmental Hazards Center. My training
10 is in neuropsychology. My field of expertise related
11 to public health is behavioral toxicology and
12 validation of behavioral test techniques. I'm a
13 Professor of Environmental Health at Boston
14 University, School of Public Health, and of Neurology
15 at Boston University, School of Medicine, as well as
16 Director of Neuropsychology at the Boston VA.
17 CHAIRWOMAN LASHOF: All right. Fine.
18 Thank you.
19 DR. OZONOFF: I'll introduce myself also.
20 CHAIRWOMAN LASHOF: Okay.
21 DR. OZONOFF: I'm Dave Ozonoff. I'm
22 Chairman of the Department of Environmental Health at
23 Boston University, School of Public Health. I'm a
24 physician. And my research specialty is in
25 environmental epidemiology, especially the effects of
114
1 toxic exposures on communities, hazardous wastes,
2 particularly in the past, and now Persian Gulf
3 veterans. I'm also Director of Boston University
4 Superfund Center, as well as being Medical Director of
5 the Boston Environmental Hazards Center.
6 CHAIRWOMAN LASHOF: Fine. We're anxious
7 to hear from you.
8 Go ahead, Dr. White.
9 DR. WHITE: It's very nice to be here.
10 Thank you for inviting us.
11 The Boston Environmental Hazards Center is
12 a cooperative center involving efforts from the Boston
13 VA and Boston University, School of Health, and Boston
14 University, School of Medicine. The center was formed
15 in response to the VA RFP for environmental hazard
16 centers specializing in research on Persian Gulf
17 illnesses.
18 We consider ourselves to be a basic
19 environmental hazards center. We do research,
20 methodologic and other research in environmental
21 health, and we are focusing our efforts during these
22 first five years on Persian Gulf-related problems.
23 Some of our research is directly with Persian Gulf
24 veterans and some of it involves basic science
25 questions related to issues related to Persian Gulf.
115
1 So, that's how we've set ourselves up.
2 Next slide, please.
3 This is sort of our organizational chart.
4 Our Assistant Director, Dr. Proctor, is here with me.
5 We have a group of core personnel, a group of
6 consultants, and we carry out a number of activities,
7 including research, training and consultation, and
8 across the bottom you see the six projects that we're
9 going to be talking about today that were part of the
10 original grant.
11 Next overhead, please.
12 I had a slide talking about our mission.
13 We see our mission to be basically research, which
14 we're going to talk about in very great detail today.
15 We also do training in environmental hazards issues,
16 and we also provide consultation to government
17 agencies on Persian Gulf-related issues and also other
18 issues in environmental health.
19 Next slide, please.
20 Our core staff is listed on this slide.
21 You've met myself and Dr. Ozonoff and Dr. Proctor
22 who's our Assistant Director. Our co-PI is the Chair
23 of Neurology at Boston University. We have a
24 biostatistician who spends forty percent of his time
25 in the center from the School of Public Health, Tim
116
1 Heeren; and an epidemiologist, Richard Clapp, whose
2 research you're going to hear about; an
3 immunotoxicologist, David Sherr, about whose research
4 you're also going to hear. Our trauma and PTSD
5 specialist Dr. Jessica Wolfe. An occupational health
6 specialist Dr. Lewis Pepper. Dr. Proctor's specialty
7 is environmental health.
8 We also have two advisory boards. Next
9 slide, please. One advisory board consists of -- is
10 what we call our community advisory board. It has
11 veterans, Persian Gulf era veterans, veterans group
12 staff, and staff from some of the local politicians.
13 In addition, we have a scientific advisory
14 board. Our scientific advisory board provides
15 feedback to us on what we're doing, and they also
16 provide advice in specialized areas. So, we can't
17 cover every part of health that might be related to
18 Persian Gulf, and we've enlisted a group of
19 consultants that can help us. These include -- these
20 are people from the VA, the Boston VA, and from Boston
21 University, School of Medicine and School of Public
22 Health.
23 So, we have Dr. Arbeit who's our
24 infectious disease specialist; Les Boden who works on
25 disability issues; David Burmaster in risk assessment;
117
1 David Christiani in environmental and pulmonary
2 medicine; Philippe Grandjean for our international
3 work; John Hayes in pathology, Howard Who in heavy
4 metals, Richard Letz in computerized assessment; Dr.
5 Post in PNS disorders; Dr. Robbins in radiology; Dr.
6 Rudders in immunology; Dr. Samowera in MRI; Dr. Snider
7 in pulmonology; and Dr. Wegman in environmental
8 medicine.
9 We also have some other specialized
10 consultants that we've been working with. George
11 O'Connor has been working on our pulmonary project;
12 Daniel Lieberman in helping with exposure assessment;
13 Dr. Paul working on reproductive hazards issues; Dr.
14 Rush is available for fetal and child health issues;
15 and Dr. Spangler for air pollution issues.
16 The next overhead contains a listing of
17 the six research projects that were funded when the
18 center was funded. It somehow got out of order. I'm
19 sorry.
20 The six research projects that we are
21 conducting, and we're going to describe them in some
22 detail, but just to give you an overview: Project 1
23 is a psychological study. The PI on it is Jessica
24 Wolfe. The co-PI is myself.
25 Project 2 is evaluation of neurological
118
1 functioning on which Robert Feldman is PI.
2 Project 3 is a cancer registry that Dr.
3 Clapp is PI for.
4 Project 4 involves evaluation of pulmonary
5 and immune function. Dr. Pepper is the PI on that.
6 We have an animal study of the aromatic
7 hydrocarbon receptor headed by David Sherr.
8 And a study of computerized testing which
9 I head.
10 We're going to talk about these each in
11 some detail.
12 The next overhead is kind of a complicated
13 one, but what I want you to see here is that we have
14 some related projects that are being carried out
15 through the center that were not part of the original
16 grant proposal. These include psychological studies
17 of a group of Persian Gulf veterans that were deployed
18 to Germany but not the Gulf. They're Gulf-era
19 veterans.
20 A study of treatment seekers, people who
21 think they're ill.
22 We have a sister study in New Orleans in
23 which the procedures from Project 1 are being carried
24 out.
25 And then we're -- we've just received some
119
1 funding to look at Gulf-era veterans who weren't
2 deployed at all, for the psychology studies.
3 And the same under pulmonary, we're going
4 to be looking at pulmonary and immune function in some
5 other subjects besides the Fort Devens cohort that we
6 described in our original grant proposal.
7 Next slide, please.
8 You're going to see this again. It just
9 shows you the progress to date. We've tested 166
10 subjects so far in the psychology study from the Fort
11 Devens sample. Thirty-six people have undergone
12 pulmonary studies and 18 people have been enrolled in
13 the aromatic hydrocarbon receptor study.
14 On the next slide you can see the subject
15 sample sizes so far in some of our other groups.
16 We've looked at 71 people in New Orleans, 50 people
17 who were deployed to Germany rather than the Gulf
18 during the Persian Gulf War, 60 Persian Gulf veterans
19 that came to our VA seeking clinical care. We've
20 recently received a grant from DOD in which we're
21 going to be looking at 200 Persian Gulf-era veterans
22 that are seeking treatment and 200 matched controls
23 that are not treatment-seeking and who were not
24 deployed.
25 I'm going to go on to start to talk about
120
1 the individual projects. I'm going to go on to start
2 to talk about the individual projects. I'm going to
3 talk about the psychology projects and the neurology
4 project, and David's going to talk about the pulmonary
5 studies, the AH receptor studies and the registry.
6 Project 1, the study of psychological
7 functioning in the Gulf War veterans is headed, as I
8 mentioned before, by Jessica Wolfe, with myself as co-
9 PI. We actually started this study back in '93
10 formally with some prior clinical funding through the
11 VA to look at the psychological functioning in the
12 Gulf War veterans and then expanded it a great deal
13 with this center grant.
14 The study has five aims: to examine
15 health symptom reporting patterns in our sample, to
16 examine the relationship between health symptoms and
17 neuropsychological test scores, to examine the
18 relationship between stress measures and
19 neuropsychological test scores, to examine the
20 relationship between environmental exposures and
21 neuropsychological test scores, and to examine the
22 relationship between post traumatic stress disorder
23 and neuropsychological test scores.
24 This study -- next slide, please --
25 emanated from an effort begun in 1991 by Bill Mark, a
121
1 chaplain who was greeting Gulf War vets when they came
2 back through Fort Devens. Jessica Wolfe worked with
3 him at that time and they did some studies of 2,949
4 veterans who came back through Fort Devens. A year
5 later -- a year to a year-and-a-half later 2,315 of
6 these same veterans were again interviewed, and I'm
7 going to show you what they -- what they went through
8 at the two times. And our study number 1 basically
9 focuses on this sample.
10 The study was set up to assess the
11 progression and course of adjustment to coming back
12 from the Gulf, and then we tacked on these other
13 things that we're doing now. We're now doing what we
14 call time three of the study.
15 The next slide shows you -- gives you a
16 description of what the Fort Devens cohort is like,
17 their mean age, education, gender, race, and service
18 type.
19 As you can see, we have a lot of guard and
20 reserve units in our Fort Devens sample.
21 The next slide shows you the data that
22 have been collected at the various times we've sampled
23 this group. Time one, we just looked at demographics
24 and a few PTSD, and combat exposure scales. We
25 expanded what was looked at at time two in 1992 to '93
122
1 to include a symptom -- health symptom check list. We
2 then used the symptom check list to help us choose
3 subjects for the current study.
4 Next slide, please.
5 The current study involves a number of
6 measures including a questionnaire, a
7 neuropsychological test battery, an environmental
8 interview that asks the veterans what they thought
9 they were exposed to in the Gulf, psychological
10 testing including a structured interview for DSM
11 diagnosis, and a PTSD scale that's given by a
12 clinician, and some other psychometric tests,
13 including basically some PTSD measures.
14 In addition to these measures, we have a
15 self-reported health symptom questionnaire that is a
16 check list on a questionnaire form that the Gulf War
17 veterans fill out. We then interview them, go through
18 the check list and we ask them in an open-ended way
19 what symptoms they think they have, and we review
20 their questionnaire with them.
21 Is there one that says "Non-Deployed Gulf
22 Group"?
23 As I mentioned before, we also have added
24 a group to this study. It's a group of National Guard
25 people from Maine who were deployed during the war to
123
1 Germany but not to the Gulf. We thought they would be
2 an interesting control group because they went through
3 some of the trauma associated with deployment, they
4 were active during the war, but they did not actually
5 go to the gulf and have the same exposures as the gulf
6 veterans.
7 So far we have tested 166 Fort Devens
8 subjects, and you can see on the next slide the
9 demographics of the various groups I've described.
10 Fort Devens, you also saw their age, education and
11 gender. New Orleans, the New Orleans sample is here,
12 and also the Germany-deployed sample which are
13 somewhat older than the Devens and New Orleans
14 samples.
15 The reason that the percent female is so
16 much higher than you saw on the original slide is that
17 we purposefully over-sampled to try to get enough
18 females to look at gender as an independent variable,
19 so, there is more females in our study than there are
20 in the Fort Devens sample. That was purposeful.
21 We couldn't control how many women there
22 were in the Germany group, so we're stuck with 14
23 percent.
24 The next overhead will show you a few of
25 very preliminary results that we have from the study
124
1 so far. We have not begun to even summarize all of
2 the data from all of the 166 people that have gone
3 through project one, but we are starting to do so, and
4 we are starting to look at the data in a number of
5 ways. I'm just going to present you a couple of
6 overheads that will sort of summarize the findings so
7 far in terms of symptom rates.
8 The sample described on the left is the
9 CDC sample that was described from Pennsylvania in
10 MMWR by Reeves and Fakuda, and you can see the rates
11 of various symptoms in their group of veterans that
12 was deployed to their -- to the Gulf and their
13 comparison group. And on the right you can see the
14 same symptoms and prevalence rates of the symptoms for
15 our sample, the Gulf-deployed and the Germany-deployed
16 group. And you'll see that the symptom rates are
17 pretty similar in our Fort Devens sample that was
18 deployed to the Gulf that were in this Pennsylvania
19 sample.
20 This is somewhat interesting because the
21 Fort Devens sample were not chosen because they
22 thought they were sick or because they signed up for
23 the registry or anything else. They're just people we
24 sampled after they came back. So, they're not a self-
25 identified group. They're a group we chose.
125
1 The next overhead shows symptom rates in
2 the vets that were deployed to the Gulf and the vets
3 that were deployed to Germany, and you will see that
4 they're significantly higher rates of most of the
5 symptoms on this overhead among the people deployed to
6 -- it shouldn't say "Deployed Devens," it should say
7 "Deployed Germany," but it's the Devens group that was
8 deployed to the Gulf. They have more symptoms, higher
9 rates of symptoms.
10 We also have been looking at our data in
11 terms of what people say on the interview about what
12 their symptoms are, because interview data are used
13 for diagnosis of things like MCS and CF -- multiple
14 chemical sensitivity and chronic fatigue syndrome and
15 post traumatic stress disorder, and what they say on
16 questionnaires, and these are the rates of symptoms
17 that people report on interview when you just say what
18 symptoms do you have, and we're finding that there's
19 a big difference between what we find in interview
20 report, it's much lower than what we find when people
21 just check off symptoms on questionnaires. We're
22 trying to decide what to do about that.
23 We also have found, though, interestingly,
24 from the interview that people really know where they
25 were in the Gulf. We have the information from the
126
1 Army on where the units were, and we've asked people
2 where they were, and we find a very high degree of
3 subject reliability in reporting where they were in
4 the Gulf. So, they seem to be being reliable about
5 that.
6 That's project one, the psychological
7 studies.
8 CHAIRWOMAN LASHOF: Could we stop there
9 for a moment, and let you take up each project
10 separately, and ask if there aren't questions that the
11 Committee might have on the first project.
12 DR. TAYLOR: I'm curious. In
13 psychological testing, based on what you found in the
14 questionnaire, are you looking at the comparison or
15 the relationship of what they're reporting as their
16 symptoms to psychology or the ---
17 DR. WHITE: We're looking at several
18 relationships there. We're looking at the -- it's
19 very complicated. I once drew a diagram of it but I
20 didn't bother to bring it because you would have just
21 gotten cross-eyed looking at it. But the relationship
22 between symptoms and psychiatric diagnosis is looked
23 at. The relation between, quote, environmental
24 illness diagnosis and psychological symptoms is looked
25 at. The relationship between PTSD and
127
1 neuropsychological findings is looked at.
2 Everyone is diagnosed, if they have a
3 diagnosis.
4 We are also looking at stress as a
5 continuous variable, at fatigue as a continuous
6 variable, and chemical sensitivity as a continuous
7 variable, just -- rather than just a yes/no diagnosis.
8 And finally, probably -- well, there's a
9 few other things we're doing, looking at -- trying to
10 see if we can find symptom clusters that might relate
11 to some of these various things. And also we're
12 starting to look at -- we have no results at all yet,
13 but we're trying to look at self-reported exposures.
14 CHAIRWOMAN LASHOF: That was my next
15 question.
16 DR. WHITE: And where they were in the
17 Gulf in terms of their symptoms, their psychological
18 symptoms, their neuropsychological test findings and
19 PTSD.
20 So, we're trying to make an exposure
21 outcome relationship.
22 Dave's going to talk a little later about
23 what our various measures of exposure are, but we're
24 working on the self-reported part of it now in our 166
25 so far.
128
1 CHAIRWOMAN LASHOF: You feel fairly good
2 about the exposure information you're getting from the
3 veterans?
4 DR. WHITE: Well ---
5 CHAIRWOMAN LASHOF: Or do you?
6 DR. WHITE: --- what do you mean "fairly
7 good"?
8 CHAIRWOMAN LASHOF: Well, what I mean is
9 that it's -- are you able to correlate what they say
10 they're exposed to with where they say they are and
11 what data may be available to us, subjective data of
12 what went on where.
13 DR. WHITE: Okay. We're going to talk
14 about exposure more in a little bit, and there's an
15 overhead for it to give us just a structure to talk
16 about.
17 What we can say so far is that we are able
18 to corroborate where -- to a certain extent where they
19 say they were with the Army location data, and we're
20 hoping to put together the Army industrial hygiene
21 data and location data with other data that came from
22 the Gulf, so we're hoping to get some corroboration
23 about what people say about Gulf War fires.
24 Things like pyridostigmine exposure and
25 SCUD exposure and some of the other things we may or
129
1 may not be able to corroborate, so we're going to have
2 to look at them on two different levels.
3 And even where people were in the gulf,
4 the troop location data doesn't go all the way back to
5 December, and if a person was taken away from their
6 unit it might not be the most reliable estimate for
7 their unit. So, it's a complex problem,
8 unfortunately. We don't have any nice little
9 dosemeters that they wore to tell us. I guess we
10 wouldn't be here if they did.
11 CHAIRWOMAN LASHOF: In relation to --
12 well, it looks like you'll be getting into it in the
13 next one -- but from your project one where you have
14 identified symptomatology which clearly was much
15 greater among those deployed to the Gulf than those
16 deployed to Germany, were you also able to -- do you
17 have enough yet to say how many of those would
18 actually fit the criteria that have been accepted for
19 chronic fatigue syndrome and for multiple chemical
20 sensitivity so that you could or could not make a
21 diagnosis of either of those conditions?
22 DR. WHITE: Well, of about the hundred and
23 maybe twenty first people that we looked at, three --
24 two to three had filled the criteria for chronic
25 fatigue syndrome. There were a couple others that
130
1 were sort of borderline. And we had one or two that
2 filled the criteria for multiple chemical sensitivity.
3 And our rate of PTSD was less than ten percent. So,
4 those are our diagnoses so far.
5 CHAIRWOMAN LASHOF: That, then, reading
6 the charts at this point meant that there was a
7 prevalence, a higher prevalence of a lot of
8 symptomatology that don't fit into any of our
9 diagnostic categories yet.
10 DR. WHITE: Right. They don't fit the
11 criteria the way they're written. That's why we're
12 very interested in -- but a lot of people are really
13 tired, and, you know, fatigue on a continuous basis,
14 some measure of fatigue might be a very interesting
15 outcome or prediction variable. Same with stress.
16 PTSD is much lower but in our group -- it's somewhat
17 higher in our New Orleans group. We have some grave
18 registry people in the New Orleans group that have a
19 much higher PTSD rate. But for the Fort Devens group
20 it's quite low. Lower than expected, actually.
21 MAJOR KNOX: Have you found any
22 significant findings with women?
23 DR. WHITE: Well, it appears in all
24 populations that women report more symptoms than men,
25 and there are gender differences in different
131
1 psychiatric diagnoses, so I'm sure we'll see some of
2 that. But mainly what we've noticed so far is
3 somewhat more reporting of symptoms among women than
4 men, which consists of with the rest of the literature
5 on symptom reports and the two genders.
6 DR. TAYLOR: These are women who served in
7 the Gulf, or ---
8 DR. WHITE: Yes. Than men who served in
9 the Gulf. But if you asked women out there in the
10 world and men out there in the world, you sort of have
11 the same thing.
12 MAJOR KNOX: What do you think you could
13 have done differently to find out the same symptoms in
14 the interview versus the questionnaire?
15 DR. WHITE: I'm not sure.
16 MAJOR KNOX: You said that there were some
17 differences, people tended to check things more
18 frequently than when you asked them in an open-ended
19 question. How could you have done that differently?
20 DR. WHITE: Well, I mean, I don't think we
21 needed to do it differently. What we were trying to
22 get at the questionnaire -- in the interview is what's
23 the most salient thing, what do people just report,
24 and then on the questionnaire you have what they
25 report with prompting.
132
1 Then we also go over the questionnaire
2 with them and they still endorse it, but it's sort of
3 a more salient symptom kind of thing that we're
4 getting at with the interview. And also the -- we ask
5 the questions to see if they meet the criteria for any
6 of the diagnoses that we talked about.
7 CHAIRWOMAN LASHOF: The interview is done
8 before the questionnaire.
9 DR. WHITE: The interview is done after
10 the questionnaire, and it still turns out that way.
11 CHAIRWOMAN LASHOF: And it still turns out
12 that way. So, even with the prompting and having
13 filled out the questionnaire, then you ask them in the
14 interview and they pick certain specific ones that are
15 ---
16 DR. WHITE: Right.
17 Yes.
18 MS. JOELLENBECK: I wondered whether the
19 Fort Devens units, do they have -- were they deployed
20 in various places all over the Gulf, or do you find
21 that they tend to be grouped in general?
22 DR. WHITE: All over.
23 CHAIRWOMAN LASHOF: Okay. I guess we --
24 if we spend too much time on your first study we'll
25 never get through all your studies, so we'd better
133
1 move it along.
2 DR. WHITE: It's the study that's the
3 furthest done, so ---
4 CHAIRWOMAN LASHOF: Well, that's good,
5 then. That's fine. Okay.
6 DR. WHITE: Project two is our
7 neurological project, and this is an exploratory study
8 in which we are looking at diagnostic groups of people
9 who have illnesses thought to be environmentally
10 related, including multiple chemical sensitivity, post
11 traumatic stress disorder, and toxicant-induced
12 encephalopathy.
13 We're also looking at control groups of
14 Gulf War veterans who do not carry any of these
15 diagnoses and era veterans who were not deployed to
16 the Gulf.
17 Next overhead, please.
18 These studies are in the planning stages.
19 We're intending to look at spec studies, FMRI and the
20 neurological exam, a standard neurological exam is
21 being done on all of the veterans as part of project
22 four. These -- we're just planning these studies now.
23 We don't have very many Gulf War veterans, as you've
24 heard, in these diagnostic groups. The original study
25 plan, we were going to over -- we were also going to
134
1 select people with these diagnoses from non-veteran
2 groups, so, we may do some of those studies with non-
3 veteran groups.
4 And the other clinical methodological
5 study that we're doing, project six ---
6 CHAIRWOMAN LASHOF: Let me stop you and
7 just see if there are a couple of questions. Granted
8 that it's just being planned at this point.
9 How many do you hope -- what's your goal
10 of the number you would hope to get in multiple --
11 with each of the diagnoses, multiple chemical
12 sensitivity ---
13 DR. WHITE: We're hoping to get at least
14 twenty with each of the diagnoses.
15 CHAIRWOMAN LASHOF: And target time frame
16 for ---
17 DR. WHITE: For finishing the neurologic
18 studies?
19 CHAIRWOMAN LASHOF: Yes.
20 DR. WHITE: We hope to have the protocols
21 all in place -- because of the center being funded,
22 our VA -- or somewhat related, at least, to the center
23 being funded -- our VA went ahead and is upgrading its
24 MRI to functional MRI, so we're getting ready to start
25 piloting hopefully this summer. We hope by summer to
135
1 have all our final protocols in place and to have run
2 a few pilots, and then this study will probably take
3 three years to get enough people and get it all going,
4 sort of.
5 We're concentrating really on projects one
6 and four, the psychological and immune function, and
7 pulmonary studies for the first two years, and then
8 hopefully at that point we'll have enough subjects to
9 do some of our more specific diagnostic studies.
10 CHAIRWOMAN LASHOF: How broad a sample are
11 you able to draw from to try to get the number of
12 people?
13 DR. WHITE: The twenty?
14 CHAIRWOMAN LASHOF: Yes.
15 DR. WHITE: Well, we're taking them from
16 the Fort Devens sample. We were also -- one reason
17 that we applied for the DOD funding to look at people
18 with clinical -- who came in complaining that they
19 were sick, was that we were hoping -- first of all, we
20 want to see how they're different from the Fort Devens
21 group, are they more extreme, are their symptoms
22 different, are their clusters different. But also we
23 were hoping that there might be more diagnosable
24 veterans in the clinical sample.
25 And that study is -- we're setting up the
136
1 contract now with DOD. That study should start this
2 summer. So hopefully that will help us. And those
3 will also be New England-area veterans.
4 CHAIRWOMAN LASHOF: Would it make sense or
5 would it just not be good scientific protocol for you
6 to try to recruit veterans who've identified
7 themselves as having this disease from further centers
8 around the country?
9 DR. WHITE: Well, we may have to do that -
10 --
11 CHAIRWOMAN LASHOF: If you had enough
12 money.
13 DR. WHITE: We might want to do that if we
14 had enough money. We also have in our clinic in
15 Boston five hundred people who have seen the registry
16 physician and who carry diagnosis -- some of these
17 diagnoses that we can tap into.
18 There's also a group of five hundred
19 veterans who have sought care at the Manchester VA.
20 We're working with Victor Gordon there. And he has
21 identified some people that he thinks may have these
22 diagnoses, and so we will be able to sample from those
23 groups also.
24 So, hopefully that will get us up to
25 twenty.
137
1 CHAIRWOMAN LASHOF: Okay.
2 DR. WHITE: And we have New Jersey that
3 we're cooperating with.
4 CHAIRWOMAN LASHOF: Okay. Go on. Any
5 other questions on this one?
6 DR. WHITE: The last study that I'm going
7 to describe is a basic methodology study.
8 We are using a set of computer-assisted
9 neuropsychological tests that have been developed for
10 studying people exposed to neurotoxicants to measure
11 the behavioral effects of exposure.
12 I have been involved in a long line of
13 research on this in which we have taken the tests and
14 attempted to subject them to the gold standard as
15 measures of central nervous system function, which is
16 that they show deficits in patients who have known
17 brain damage and known specific types of brain damage.
18 So, what we're doing in this study is
19 looking at neurological patients with specific
20 neurological diagnoses. We're also looking at the
21 MCS, CFS and PTSD patients in order to see if there
22 are any of these computer-assisted tests that will
23 help us in diagnosing central nervous system or
24 cognitive dysfunction associated with any of these
25 diagnoses.
138
1 These tests are much easier to give
2 because they're computer-assisted. They're not
3 computerized. We don't put the subject in front of
4 them or the patient in front of them and say "do this
5 by yourself." But the test stimuli and responses are
6 measured by the computer. So, that's project six.
7 CHAIRWOMAN LASHOF: Time table for project
8 six? Number of people?
9 DR. WHITE: We are starting to pilot that
10 study now. We changed some of the tests because our
11 prior validation studies showed that some of the tests
12 didn't work the way they were expected to work so we
13 developed some new tests, and we expanded the
14 flexibility of the testing system so people could be
15 tested auditorially in tactile. We now have all the
16 tests in place.
17 The person who -- Dr. Letz who helped us
18 with the revision of the battery is going to be in
19 town next week and will have all the new stuff on our
20 computer and will be able to up and go with some
21 pilots.
22 We're going to be using some undiagnosed
23 Gulf War veterans as our pilots to make sure our
24 system works the way we want it to, and then we'll
25 start the validation study.
139
1 It has a lot of subject groups so it'll
2 probably take the rest of the five years to get them
3 all into the study.
4 DR. TAYLOR: How are you identify the
5 neurotoxicants? What is that exactly?
6 DR. WHITE: For neurotoxicant induced
7 encephalopathy, we are -- Dr. Proctor actually has a
8 career award to look at this particular group, and
9 this particular group for this study, for project six,
10 is a group of people who have a well-defined and
11 described exposure to a neurotoxicant like lead or
12 carbon monoxide or mixed solvents or perchlorethylene,
13 something like that, mercury, we have a number, and
14 who have been shown by clinical workup with an
15 environmental health physician, a neurologist and a
16 neuropsychologist, to have secondary brain damage, and
17 those will be the -- that will be the subject group
18 for the validation of this battery on the
19 neurotoxicants.
20 CHAIRWOMAN LASHOF: Any other questions on
21 that? Okay.
22 DR. WHITE: Dr. Ozonoff's going to talk
23 about exposure assessment and some of the other
24 projects.
25 DR. OZONOFF: You've heard about projects
140
1 one, two and six. You'll now hear about projects
2 three, four and five, not in that order, but starting
3 with project four.
4 The fulcrum of much of this research is in
5 exposure assessment. One of my colleagues who I
6 suspect was once a real estate agent says that the
7 three most important principles of environmental
8 epidemiology are exposure assessment, exposure
9 assessment and exposure assessment; perhaps an
10 overstatement, but certainly it's a critical piece of
11 the entire picture. And unfortunately it's one of the
12 fuzzier pieces, the one -- one of the pieces with the
13 most indistinct edges, the one that's most difficult
14 to fit into the rest of the puzzle because we don't
15 know its shape that well.
16 Here are the sources of data that we have
17 for the exposure assessment. The first two are self-
18 report information on Gulf locations and dates and
19 theater from the structured environmental interview
20 that the sample is undergoing at time three.
21 At the same we asked them about various
22 exposures that they took, for example, did they take
23 pyridostigmine, did they use insect repellent, or were
24 they involved in SCUD missile attacks, what was their
25 experience with the oil well fires and so forth.
141
1 There are, I suppose, several schools of
2 thought on the reliability of self-report information.
3 I guess the first thing I would say is that self-
4 report information is the backbone of clinical
5 medicine. I mean, that's what patients come in and
6 tell doctors what their chief complaints are and it's
7 served well for clinical practice throughout these
8 many years.
9 Secondly, we adopt the position that -- of
10 trust with the people who come to us. We believe what
11 they say. And I think our experience in all the
12 validations that we've done is that that trust is well
13 placed.
14 Thirdly, it's -- perhaps it's the only
15 source of information on most of this. So, under the
16 assumption that some information is better than no
17 information, with the added caution that we believe
18 the information is not wrong deliberately or
19 accidentally, we feel that this is valuable sources of
20 information.
21 As Dr. White said, that insofar as we can
22 validate some of this, for example, self-reporting
23 information on locations and dates and theater, we
24 have information from the Defense Manpower Data Center
25 on dates in and out of theater. We have some
142
1 information on troop location for the units that are
2 involved in the Fort Devens sample. And insofar as
3 we're able to check information from categories one
4 and two with information documentation from categories
5 three and four, we find it to be reliable information,
6 which is reassuring.
7 Our research work also is focusing on one
8 of the aspects of exposure. There are so many kinds
9 of exposures that occurred to veterans in the Gulf
10 that I suppose, you know, when I first looked at it,
11 the question was not why are some of the veterans
12 sick, but why aren't they all sick.
13 On the other hand, in order to do
14 efficient research work you really have to focus on
15 some things, and that means not looking at other
16 things.
17 We have elected to look at the oil well
18 fires. We understand that there are some differences
19 of opinion as to the importance, the long-term
20 importance of the oil well fires for the overall
21 health effects that have occurred in this population.
22 We have several reasons for believing the
23 oil well fires are important to look at. One of them
24 is if you look at the very scanty but existing
25 industrial hygiene data for particulates in this area,
143
1 they're very high, and they persisted for reasonably
2 long periods of time.
3 If you compare them with other levels that
4 are known to produce acute health effects, for
5 example, the London fog levels or the Donora -- what
6 was assumed in Donora, Pennsylvania, in 1948, they are
7 comparable, same order of magnitude. So, instead of
8 a thousand micrograms per cubic meter, it's maybe four
9 or five hundred micrograms per cubic meter, but it
10 went on for a much longer period of time.
11 The materials involved, the products of
12 combustion are biologically active, not only as
13 mutagens or carcinogens, not only as respiratory
14 irritants, but as also they affect many other systems,
15 they punch a button in the cell called the AH receptor
16 which you'll hear a little bit more about in a moment,
17 which can have manifold effects on the body. So, for
18 that reason, we thought it was important.
19 And lastly we believe it's important
20 because it's a matter of considerable concern to the
21 veterans that we've talked to. This is one of the
22 exposures that they bring up time and again as
23 something that they are concerned about, and if for no
24 other reason than that, it's important to look at it.
25 And as I say, for the first several reasons why we're
144
1 looking at it, we think that it makes sense, it's a
2 plausible place to look for problems.
3 So, along with the first four areas of
4 information here, we are hoping at some point in the
5 future to get the result of an air-modeling effort
6 being done by the U. S. Army Environmental Hygiene
7 Agency team. This is a meso scale regional modeling
8 of the particulate exposures from the oil well fires.
9 Because of it, it's a meso scale modeling effort, that
10 means it's being done on a fairly coarse grid of
11 fifteen kilometers by fifteen kilometers.
12 The idea will be to put together the unit
13 location information with this fifteen-kilometer-by-
14 fifteen-kilometer grid and by tracking units in their
15 locations throughout the time period of exposure, be
16 able to cumulate, to get a cumulative measure of
17 exposure to the oil well fires through this air
18 modeling exposure data.
19 Now, we're very -- we've used, actually,
20 air modeling data, usually industrial source complex
21 models for our studies in the past, and we're fairly
22 well aware of the limitations of this kind of air
23 modeling data for exposure assessment. It is not our
24 claim that we can predict with any high degree of
25 accuracy exactly how much particulates individuals
145
1 were exposed to as a result of a model like this,
2 especially one on such a coarse scale.
3 On the other hand, we think that it's
4 probably a fairly good relative measure of exposure.
5 It takes into account meteorological conditions; it
6 takes in -- there's a source term involved; and,
7 therefore, we think that it makes sense to use that.
8 The other kinds of measures that would
9 typically be used, for example, the amount of time in
10 theater, as a measure of the exposures during the oil
11 well fires, that would be a very good and a normally
12 used cumulative measure of exposure. This is even
13 better because it, in fact, incorporates that term,
14 plus the meteorological conditions and a source term
15 for the modeling as well.
16 However, we are going to look at other
17 measures of exposure, other metrics of exposure as
18 well.
19 Next slide, please.
20 Here is project four. This -- these are
21 detailed clinical examinations that are being done on
22 the Fort Devens sample. Fort Devens sample, as you
23 may recall, started out with 3,000. They're now being
24 brought a few hundred a year. And those individuals
25 are being looked at very intensively with a very
146
1 intensive neuropsych battery that Dr. White has just
2 described to you, but at the same time they're being
3 looked at with clinical studies.
4 The set of hypotheses for project four
5 essentially say that if you were exposed to a lot of
6 smoke from the oil well fires there's going to be some
7 effect on your pulmonary function. That effect on
8 pulmonary function might be at the level of the
9 symptoms that you report. It might be at the level of
10 a standard pulmonary function test. Or it might at
11 the level of a greater irritability of your bronchial
12 tree. So, we're testing that third possibility with
13 pulmonary function testing with methacholine
14 challenge.
15 One of our consultants, George O'Connor,
16 is the deviser of a particularly sensitive way to do
17 methacholine challenges and we're using that protocol.
18 Next slide, please.
19 In order to carry out the study which is
20 now underway, we need to assign exposures. That is
21 being done separately with the evaluation of the
22 health outcomes so that essentially both exposure
23 assessment and the health outcomes are being done
24 blinded. And, in fact, we're still waiting for the
25 industrial hygiene data nad the modeling data.
147
1 Then we need to assess outcomes and risk
2 factor variables. That's being done on the basis of
3 a physical exam and pulmonary function testing, and
4 then test the relationship with that. And at the same
5 time establish a roster of veterans with well
6 documented respiratory status.
7 This is important, we feel, because it may
8 be that down the line there will be differences in
9 groups with slightly different pulmonary and
10 respiratory status. At the moment the model for that
11 is the Donora, Pennsylvania, air pollution episode of
12 1948 where people who came in sick in 1948 were seen
13 in the emergency room, were followed up seven to eight
14 years later and increased rates of morbidity and some
15 increased mortality was found in the people with the
16 acute symptoms who later appeared to recover but down
17 the line didn't fare as well as the people who didn't
18 come in.
19 Next, please.
20 And here's the protocol for this project.
21 There is a pulmonary history questionnaire adapted
22 from the American Thoracic Society and the
23 International Union Against Tuberculosis. There is a
24 physical exam which concentrates on cardiopulmonary
25 function and also a detailed neurological exam. The
148
1 detailed neurological exam, of course, feeds back into
2 projects one and two insofar as if there are any frank
3 neurological deficits or neurological disease it's
4 important for the interpretation of the neuropsych
5 testing as well.
6 There is a standard set of blood tests, a
7 CBC, the blood chemistry, which is a smack twelve
8 which is the same thing that's being used in the
9 registry.
10 We are also looking at IGE's because of
11 the relationship with asthma. These are
12 immunoglobulins. And then we are doing some flow
13 cytometry to look at some immunologic status.
14 The pulmonary function tests are standard
15 pulmonary function tests being done under NIOSH
16 protocols under NIOSH-protocol-trained technicians,
17 and then in the next year we will begin methacholine
18 challenges.
19 Methacholine is a substance that you
20 expose through inhalation to the subject and if they
21 have hyperactive airways, so-called reactive airway
22 disease, you can pick it up with graded exposures to
23 methacholine.
24 And then there's a follow-up health
25 symptom interview associated with that.
149
1 And the next slide.
2 Here's what's transpired to date as of,
3 say, a week ago. Thirty-six subjects have completed
4 the respiratory questionnaire. Twenty-six of them
5 have had pulmonary function testing. Twenty-three
6 have had physical exam. And twenty-two have had blood
7 drawn. Some of those bloods have also been sent to
8 project five which I'm going to describe in a minute.
9 I think that's the rundown on project
10 four. Let's see the next slide and if it's -- yes,
11 okay, project three. So I'll pause here for a moment
12 if you have any questions about this effort.
13 DR. TAYLOR: Can you go back to the
14 previous slide that showed the sample size? This is
15 what you have thus far in that sample group is thirty-
16 six subjects?
17 DR. OZONOFF: This is what's been run
18 through the sample so far. The size of the study
19 population is the same as project one, it's the Fort
20 Devens population that's coming back. Besides getting
21 the test that Dr. White described, they're also
22 getting these.
23 DR. WHITE: What happened is this was a
24 year delayed from the other stuff, so we had already
25 done a lot of people on the psychological studies
150
1 while we were buying the PFT machines and getting
2 people trained and so on. Now we're -- now when
3 somebody comes in for project one they get everything,
4 but we're calling all the people that had the psych
5 studies back in for this project. For the people that
6 were seen before, we had all this methodology in
7 place.
8 DR. TAYLOR: I had one other question.
9 You mentioned that you -- can you explain
10 again specifically about how you're going to look at
11 exposures to Gulf War fires. Are you using actual
12 reports from the environmental group of sampling that
13 was collected during the Gulf War, or this is going to
14 be a group where you're testing ---
15 DR. OZONOFF: Well, there are several
16 sources of information. One of them is, you know,
17 what the subject tells us about their exposure.
18 That's a piece of information. We'll have to look to
19 see what kinds -- what the nature of those reports are
20 to figure out how to code it properly.
21 But certainly if somebody says they were
22 in the midst of a cloud of black smoke, their uniforms
23 were soaked with oil day after day, this is a piece of
24 information that clearly would be relevant.
25 Second piece of information might be some
151
1 gross measure of exposure, for example, how long they
2 were in country during the fires.
3 Third piece of information would be using
4 modeling efforts. Now, those modeling efforts do not
5 explicitly take into account the industrial hygiene
6 measurements that were done. There weren't very many
7 measurements done. There were a handful of locations,
8 six or eight or so where measurements were done.
9 There actually is some additional industrial hygiene
10 information available from the Saudis which we are
11 trying to obtain now. But in terms of the Army
12 measurements, there are not very many measurements.
13 So, in the absence of many measurements,
14 and those only snapshots at certain points in time,
15 the alternative is to try and figure out on the basis
16 of the volume of material that was burned and the
17 meteorological conditions at the time which are
18 available, exactly where that stuff would have gone
19 and how long it would have stayed along and what the
20 concentrations would have been at various places.
21 So, that uses a source term which is how
22 much stuff is coming up, and it uses meteorological
23 conditions, wind direction, mixing heights, and amount
24 of cloud cover and so forth, and insulation, that is,
25 the amount of sunlight that comes down. And it, on
152
1 the basis of a physical model, makes a prediction as
2 to what the levels would have been in a square fifteen
3 kilometers by fifteen kilometers. And if you know
4 where the unit was at any particular time, you can
5 assign them to a square and then cumulate over time
6 the amount of exposure they would have gotten
7 according to that model.
8 It's probably -- in fact, it almost
9 certainly in our view does not predict how much they
10 were really exposed to, but what it does is it
11 provides a relative exposure from one unit to the
12 next.
13 CHAIRWOMAN LASHOF: Who's doing the
14 modeling?
15 DR. OZONOFF: The -- I forget the title.
16 U. S. Army Environmental Hygiene Agency Team which is
17 in ---
18 MS. JOELLENBECK: Aberdeen.
19 DR. OZONOFF: Aberdeen.
20 MS. JOELLENBECK: Their name is now the U.
21 S. Army Center for Health Promotion and Prevention,
22 Preventive Medicine.
23 CHAIRWOMAN LASHOF: And the time frame for
24 completing project four?
25 DR. OZONOFF: It's concurrent with project
153
1 one, so it's going to proceed at the pace of a hundred
2 and twenty, I think, a year, for the next two or three
3 years.
4 DR. WHITE: We hope to have two hundred
5 and fifty people through project one by the end of the
6 summer, and it will take a bit longer to get everybody
7 back for the -- so that they've had the full protocol,
8 but we hope sometime by the middle of the next year
9 we'll have two hundred and fifty people with both
10 projects, one and four.
11 CHAIRWOMAN LASHOF: What's the limiting
12 factor on speeding things up?
13 DR. WHITE: Well, we have to randomly
14 sample our larger sample. We chose two hundred people
15 for our first group. We've now called up another
16 hundred-and-fifty names. And it's basically getting
17 people to come in and getting it set up. We -- you
18 can only go so fast through those names, get people
19 set up for so long.
20 How many people do we have scheduled now?
21 We probably have about two hundred and
22 five scheduled now. But they have to take off work,
23 you know, you have to bring them in, they have to ---
24 CHAIRWOMAN LASHOF: What I was trying to
25 get at is whether the limiting factor is that sort of
154
1 thing, trying to get them and how fast they can come
2 in, or how much manpower you have at the center to
3 actually handle how many you can handle a day and what
4 it will take it do it faster.
5 DR. WHITE: Well, I mean, there's some of
6 that, but the other thing we've done is we've gone to
7 them, so if we have a group of people in Rhode Island
8 or a group of people in New Hampshire, we've gone and
9 scheduled some weekends where we've gone to them, and
10 then we've been able to do a whole bunch of people at
11 once. So, when we can do that, we do that.
12 And I think if we weren't doing that our
13 numbers would be much lower.
14 CHAIRWOMAN LASHOF: Okay. Thanks.
15 MS. BRIX: Are you going to be testing all
16 the people who are in project one also in project
17 four? And another question is, do you have medical
18 exclusion criteria such as previous history of head
19 trauma before a person went to the Persian Gulf or
20 something like that that would -- where you would
21 decide not to include them in the study?
22 DR. WHITE: Everyone in -- well, we're
23 going to try to get everyone who was in project one to
24 do project four. Obviously there'll be some people
25 that we won't be able to get back for various reasons.
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1 But our goal is to get as many as we can of the people
2 who've done the psychology project to do the project
3 four, and everybody who comes in now has both at the
4 same time.
5 We don't exactly have exclusion criteria.
6 What we're doing is we're keeping track of people's
7 medical history, neurological history, physical
8 history, problems they had before, substance abuse,
9 alcohol abuse. We have a very extensive protocol that
10 looks at historical factors, and we will note them and
11 consider them when we need to when we're looking at
12 different problems within our data set.
13 DR. CAPLAN: I know you've got a lot of
14 variables to measure and you've explained how you
15 picked out the oil fire exposures, but are you going
16 to be able with these sample sizes to look for
17 synergistic effects between other things that people
18 might have been exposed to, or -- whether it's the
19 delousing or certain microbes and so forth? Is that
20 possible?
21 DR. OZONOFF: Well, I think it's difficult
22 to say at the moment. Of course, once you have more
23 than one independent variable involved, the cells
24 start to get small, and it's going to depend on what
25 the numbers are. So, I think the answer at the moment
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1 is not clear, although other kinds of variables can be
2 looked at separately.
3 When you start looking at variables in
4 combination and interactions, then you begin to have
5 statistical power problems.
6 DR. WHITE: One of our plans is to look at
7 -- we are looking at reports about insecticide use and
8 reports about pyridostigmine and SCUDS and depleted
9 uranium, anything, and when we have a big enough end
10 we're starting to design some studies where we're
11 looking at these separate exposures and outcome. If
12 we get some hypotheses from what we see there, or some
13 hypotheses about some interactions and we think we
14 need more people, then we'll try to sample so that we
15 can look at those questions.
16 I mean, our original plan had been to do
17 a big thing for five years with these people and do
18 five hundred people, but what our plan now is to do
19 these first two hundred and fifty in the first two-
20 and-a-half years or so and then see if we can look at
21 some more specific questions with our data later on,
22 so that, you know, maybe we can get at mechanisms or
23 interactions or whatever. But we feel that we may
24 have to be flexible about our methodology as we see
25 what we see in our data.
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1 DR. CAPLAN: One other question. What
2 sort of feedback are you giving to the subjects about
3 your findings? When will they find out?
4 DR. OZONOFF: For example, if there's any
5 clinical information, that's referred to the clinical
6 side of the VA, and ---
7 DR. WHITE: With the subject's permission.
8 DR. OZONOFF: Yes.
9 With respect to the research, we're
10 telling them that this is research information and,
11 therefore, not necessarily of value ---
12 CHAIRWOMAN LASHOF: To them.
13 Any other questions on this one?
14 Okay. Go ahead to the next.
15 DR. OZONOFF: Next slide, please.
16 Project three is really an outgrowth of
17 the -- it's a combination of an update of the
18 previous Agent Orange study and a new study involving
19 the Persian Gulf veterans.
20 Just to put the Persian Gulf portion of it
21 in perspective, let me just briefly describe the
22 Vietnam study.
23 In Massachusetts veterans who served in
24 Vietnam were offered a bonus of $300 and Vietnam-era
25 veterans were offered a bonus of $200. It was
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1 automatic. You just show them your discharge and if
2 it says you were in Vietnam you got three hundred;
3 otherwise you got two hundred if you were a veteran in
4 the Vietnam era.
5 A tape of people who receive those bonuses
6 is kept in the Secretary of State's office here in
7 Massachusetts, and Dr. Clapp who was conducting the
8 study a number of years ago decided to link that
9 information with the Cancer Registry in Massachusetts,
10 and he has done several studies, a mortality study and
11 a standardized morbidity odds ratio study showing
12 increased risk of soft tissue sarcoma in that group.
13 He has always wished to update that study
14 with a further passage of years to see whether
15 additional cancers -- he's particularly interested in
16 thyroid cancer -- would show up.
17 This is primarily a central cancer
18 veteran-type linkage study. When this project here
19 came along, we decided that we wouldn't wait for the
20 complaints of cancer which we assume will probably
21 materialize some years down the line, but set up a
22 roster right away that we can then keep track of as
23 the years pass. And, so, we are linking the veterans'
24 tapes of New England veterans with all the central
25 cancer registries in the New England area, and as a
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1 result of the federal legislation that was passed a
2 year or two ago under the sponsorship of Congressman
3 Sanders, all states now have to have central cancer
4 registries.
5 And, so, we are setting up that linkage.
6 It's a relatively inexpensive project. It's
7 preparation for the future since the latency period is
8 not sufficient if there were any carcinogens involved
9 here for cancers to show up.
10 On the other hand, we thought that it's
11 best to have a system like this set up, and that's the
12 purpose of project three. There are no results to
13 report to you, but I'd be glad to answer any questions
14 about it.
15 MAJOR KNOX: Are you going to look back at
16 the previous years since the Gulf just to look at the
17 number of cancers that have already occurred?
18 DR. OZONOFF: Yes. We will be surveilling
19 the cancer results year by year, and we're setting it
20 up now -- we're setting up the linkage now, and that
21 linkage will also be good for the years prior to this
22 if there was an extant cancer registry in the state.
23 Vermont, for example, has just set one up. On the
24 other hand, Massachusetts has had one since 1982 and
25 so we can look at all cancers that have appeared from
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1 '91/'92 on.
2 CHAIRWOMAN LASHOF: Any other questions?
3 Okay. Go ahead.
4 DR. OZONOFF: And finally project five.
5 Oil well fires produce products at combustion, many
6 products at combustion. What they have in common is
7 that they appear to work their biological effects
8 through a button they push on the cell called the
9 aromatic hydrocarbon receptor, or the AH receptor,
10 sometimes called the dioxin receptor because it's the
11 same button that dioxin pushes and PCBs and many other
12 things.
13 So, although this project is specifically
14 aimed at Persian Gulf exposures, in fact it produces
15 information that's useful to the Agent Orange question
16 and to all veterans who might be involved, say, with
17 exposure to diesel exhaust or other products of
18 combustion.
19 The hypothesis in the field is that the
20 level of the AH receptor and perhaps the quality of
21 the AH receptor is important in how these biological
22 effects work, but that's never been confirmed, and so
23 a basic part of the study is to confirm that the AH
24 receptor is the essential button that gets pushed.
25 The harder you push the button, the bigger the effect
161
1 that you get, or the bigger the button is, or how well
2 the button works. And this is being done by producing
3 transgenic mice, both knockout mice and mice with
4 elevated levels of AH receptor.
5 So, it's a basic science study with direct
6 and very pertinent application to the Persian Gulf
7 problem.
8 The original proposal described also
9 another series of animal studies which would develop
10 the methods whereby the level of AH receptor in
11 veterans could be measured and then followed by a
12 phase in which this would be measured in veterans.
13 We've had a great deal of success in this
14 particular research project and we have now skipped
15 over the animal portion and the assay for single-
16 stranded confirmation polymorphism analysis has been
17 perfected and is being used currently in seventeen or
18 eighteen bloods from the Persian Gulf veterans
19 obtained in project one have now been run through that
20 assay, so we are now able to make quantitative
21 measures of the amount of AH receptor in veterans, and
22 we hope with the passage of not much more time we will
23 also be able to look at the quality of those AH
24 receptors, that is, to see whether there is a genetic
25 polymorphism involved.
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1 The basic question here really is if you
2 have two people in the same unit exposed to an oil
3 well fire and one of them feels rotten and the other
4 one doesn't, what's the difference between the two of
5 them.
6 If these biologically active compounds
7 present in abundance in this environment work by
8 pushing this button, then the difference might be that
9 one of them has a bigger -- one of the individuals has
10 a bigger button, or no button at all, or more buttons
11 on their cells, or they may have buttons that don't
12 work as well, so you push them and they don't send as
13 big a signal.
14 That's what this research is trying to get
15 at is why are there differences between the way people
16 react to polycyclic aromatic hydrocarbons, which are
17 the compounds present in the oil well fires.
18 I'll leave it at that and be glad to
19 answer any questions about this particular project as
20 well.
21 DR. TAYLOR: You said there are eighteen
22 individuals?
23 DR. OZONOFF: Eighteen bloods have been
24 sent over for SSCP analysis, but we will eventually
25 run all of the bloods through them. What's just
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1 happened is that the assay has been perfected so that
2 it can be used on human blood to quantitate the amount
3 of AH receptor.
4 The transgenic mice are in various stages
5 of production. Chimeric mice have been produced and
6 they're being bred with each other and we're looking
7 to see whether the knockout gene will go germ-wide or
8 not so that we can produce homozygous recombinants.
9 CHAIRWOMAN LASHOF: What's the data that
10 we now have that there are genetic differences in
11 humans on ---
12 DR. OZONOFF: There is not very much, if
13 any, information about human polymorphisms for the AH
14 receptor, but polymorphisms in mice are very well
15 described and known, both in quantity and in quality.
16 There are dioxin-resistant mice and dioxin-sensitive
17 mice. And this is primarily due not only to the
18 amount of AH receptor in their cells, but to the level
19 of binding of the AH receptor in the polymorphic
20 varieties.
21 And there's very I would say sound reason
22 to believe that there are similar polymorphisms in
23 humans, although nobody has looked at it, and this
24 assay will be one of the first to really -- to look at
25 human populations for this kind of polymorphism.
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1 CHAIRWOMAN LASHOF: So, obviously then, we
2 have no idea what the distribution might be ---
3 DR. OZONOFF: That's correct.
4 CHAIRWOMAN LASHOF: --- at this point.
5 Okay. Are there other questions?
6 We're right on time. Thank you very much.
7 That was really very helpful and very fascinating
8 work, and I wish you the best and wish you could do it
9 all in about half that time.
10 DR. WHITE: So do we.
11 (Whereupon, a lunch recess was taken.)
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1 AFTERNOON SESSION
2 CHAIRWOMAN LASHOF: The rest of the
3 Committee should be joining us momentarily, but I
4 don't want to delay anyone else. So, this afternoon
5 the first session will be on the environmental hazards
6 research work of the Veteran Affairs Medical Center at
7 East Orange. Dr. Ottenweller and Dr. Natelson will
8 present.
9 Welcome, Dr. Ottenweller and Dr. Natelson.
10 It's a pleasure to have you here. Whoever is to go
11 first -- if you'd both just introduce yourselves, a
12 little bit about your background, and then whoever
13 wants to kick it off.
14 DR. OTTENWELLER: My name is John
15 Ottenweller and I'm a Professor of Neuroscience at the
16 New Jersey Medical School, and I'm the Research
17 Director for the Environmental Hazards Center in New
18 Jersey with a long time research interest and training
19 in neuroendocrinology and chronic stress.
20 DR. NATELSON: And I'm Benjamin Natelson.
21 I am a neurologist at the VA Medical Center and
22 Professor of Neurosciences at our sister medical
23 school, the New Jersey Medical School, and I've had
24 merit review funding from the VA since 1974 to look at
25 my interests in experimental behavioral medicine, the
166
1 effects of stress on the outcome of disease in
2 animals. And I'm the Medical Director of our center.
3 And I'm also the Director of an NIH-funded center at
4 the medical school to study chronic fatigue syndrome.
5 CHAIRWOMAN LASHOF: Very good. Thank you
6 very much for joining us today. And who would like to
7 begin?
8 DR. NATELSON: Let me, please. Let me
9 give you a little overview of how we've organized
10 things at New Jersey. We basically have a set of
11 clinical and basic science studies. The clinical
12 studies consist of an epidemiological survey to
13 identify risk factors for veterans complaining of
14 problems after the Gulf, and also to provide subjects
15 for our research studies.
16 As you can see, our clinical studies are
17 focused on chronic fatigue, and that's because we are
18 going to use the knowledge that we've gleaned in our
19 civilian population, the patients with chronic fatigue
20 syndrome, based on our NIH-funded studies, to look to
21 see whether the answers are the same for the veteran
22 with chronic fatigue.
23 And we're also studying chemical
24 sensitivity because our colleagues at EOHSI, the
25 Environmental and Occupational Health Sciences
167
1 Institute at our sister medical school, have NIH
2 funding to look at chemical sensitivity.
3 And then the last piece is the behavioral
4 studies on genetic stress and responsiveness to
5 pyridostigmine.
6 Now, the thing that captured our attention
7 early on concerning the veteran who returned from the
8 gulf was the fact that the most common complaints of
9 four Persian Gulf veterans with unexplained illnesses
10 were complaints that patients with chronic fatigue
11 syndrome and multiple chemical sensitivity have;
12 specifically, fever, headache, muscle and joint pain,
13 loss of memory and sleep disturbances. The ones we
14 bolded are part of the case definition of chronic
15 fatigue syndrome and although there is not a case
16 definition for multiple chemical sensitivity, are
17 complaints that these patients have.
18 So, we thought that the veteran may also
19 have had CFS or MCS, and so to look at that question,
20 what we did was take our questionnaire that we used to
21 identify patients in the community with chronic
22 fatigue syndrome and mailed that questionnaire to over
23 two hundred and thirty veterans on the registry,
24 randomly selected, and another two hundred and about
25 ten veterans who complained of fatigue as one of their
168
1 three major complaints.
2 And what we did was we went through --
3 these questionnaires essentially have been built to
4 identify on paper patients that look like they have
5 CFS or MCS to come into our respective centers for a
6 careful history and physical and rule out bloods to
7 corroborate the illness, and then in our CFS center to
8 participate in our NIH-funded research.
9 So let me just go through the case
10 definitions of CFS.
11 CFS has now two case definitions. This
12 was the original one published in the Annals in 1988,
13 and basically what we do on our questionnaire is we
14 are sure the patient has a fatigue illness. We ask
15 the patient whether that illness has produced greater
16 than a fifty-percent reduction of activity. And what
17 chronic fatigue syndrome is, is it is fatigue plus.
18 Plus a series of neuropsychiatric infectious
19 rheumatological complaints. And here you can see the
20 ten minor symptoms which the case definition requires
21 be present for at least six months, and we've asked
22 the veteran to endorse seven of them.
23 Now, on our questionnaire we also get a
24 chance to do some screening for exclusions because
25 obviously fatigue is an incredibly common complaint in
169
1 many medical illnesses, and we have to rule out other
2 causes of fatigue. So, we ask whether the veteran had
3 other medical problems, for instance, unresolved
4 hepatitis.
5 One of the rule-outs for CFS is the
6 presence of psychotic or delusional disorder. Severe
7 depression in the melancholic or manic-depressive
8 range, but not simple depression, not major
9 depression, that's not an exclusion.The presence of
10 dementia and then the presence of an eating disorder.
11 So, if a veteran had indicated that he or
12 she had one of those exclusions, then we would assume
13 even though he or she endorsed fatigue that there was
14 a medical cause for it.
15 Well, a year ago in December a number of
16 us got together in the CDC because of concern that
17 perhaps that definition was a bit too rigid, and so
18 the idea was to open up, to get a bigger denominator
19 of patients with severe fatiguing illness and be a
20 little bit less restrictive. And so there were a
21 couple of changes made in this '94 publication in the
22 Annals.
23 Again, the individual -- and here again,
24 the veteran -- had to be sick with a fatiguing
25 illness. Instead of asking for a percent decrease in
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1 activity we're now looking for substantial reductions
2 in activity in one of these four aspects of life, and
3 then the number of minor symptoms was reduced. They
4 dropped fever and chills because fever was rarely
5 documented by the patient, and weakness. And so,
6 again, the minor symptoms consist of symptoms in the
7 neuropsychiatric, infection, and rheumatological
8 domains, and now only four of those minors needed to
9 be endorsed. And again, the same exclusions.
10 Now, we also screened for patients who
11 might have multiple chemical sensitivity, and on our
12 questionnaire we asked the veteran are you unusually
13 sensitive to chemicals, and if the veteran said yes,
14 we then asked him or her to tell us whether they had
15 had to change their life because of that chemical
16 sensitivity. Did they have to take a special diet?
17 This is the so-called Cullen criteria. Special
18 precautions in home furnishings. Special precautions
19 in clothing. Trouble shopping or eating out.
20 So, if they endorsed two out of four of
21 these and said yes, that they were sensitive to
22 chemicals, then we would say that they might have MCS
23 and we bring them in for history and physical.
24 But we had another set of questions that
25 were used by a California study in MCS in which we
171
1 asked the individuals -- and these, of course, are
2 questions that are given both to veterans and to our
3 civilian subjects -- whether there were specific
4 situations related to chemical exposure which made
5 them feel ill.
6 And if the individual endorsed five out of
7 eight of these at the moderate severity, then we would
8 also say that they might have MCS. And you can see
9 these are the sorts of odorants that the chemically
10 sensitive individual over and over again tells us are
11 problems for them.
12 Now, what we did then is we got these
13 questionnaires back and the put them together to look
14 at on pencil -- on paper what is the possible
15 prevalence of CFS using the '88 more rigid criteria,
16 because, after all, we did this before 1994, before
17 those 1994 criteria were out. And so, what we found
18 was about a five-percent -- when we then went to the
19 group of veterans who were on the registry without
20 fatigue, this was a random group, we found about five
21 percent of them appeared to have CFS and three percent
22 chemical sensitivity.
23 Now, the data on chronic fatigue syndrome
24 suggests that probably the most comparable data came
25 out of Boston from a CFS center here in Boston, and
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1 suggested a prevalence of a -- based on a thousand
2 consecutive patients to the doctor's office, a
3 prevalence of about .3 percent.
4 Now, obviously, this is a much higher
5 number and this number is based on paper and pencil
6 and it's quite possible, therefore, that on a face-to-
7 face sort of basis that that number will come down,
8 but this did support the hypothesis that we had in our
9 mind that perhaps there was something about serving in
10 the Gulf that might have produced a mini-epidemic of
11 chronic fatigue syndrome.
12 And also, quite a few of these patients --
13 and there's a good overlap here -- have chemical
14 sensitivity.
15 Now, as far as the patients -- as far as
16 the veterans on the registry who told the registry
17 doctor that fatigue was one of their problems, we see
18 a doubling of that paper and pencil prevalence. So
19 that ten percent seem to report at least the criteria
20 consistent with CFS, and six percent fulfilled that
21 operational definition of MCS that I shared with you
22 just a few minutes ago.
23 Now, what Dr. Ottenweller and I and center
24 staff have done to get going has been to take every
25 Persian Gulf veteran seen at the East Orange VA and
173
1 send them that same questionnaire. Again, what we
2 want to do is identify veterans so that we can fine
3 tune our protocols and get started.
4 And based on those data, again we're
5 seeing about the same prevalence of paper and pencil
6 CFS, five percent, and then if we go to the new
7 relaxed criteria, nineteen percent, many more because
8 that's an easier criteria-- set of criteria to obtain,
9 and about ten percent have apparent chemical
10 sensitivity. Half seem to be with CFS.
11 So, there's a big overlap between CFS and
12 MCS, but let me make -- let me hasten to say there are
13 chronic fatigue syndrome patients, fifty percent of
14 them down here, that don't have any chemical
15 sensitivity. So, it's a very interesting population
16 that we've then been able to identify.
17 Now, I'm just going to mention the
18 projects, and then Dr. Ottenweller will go into each
19 of them in detail.
20 The first project, which is headed by
21 Howard Kipen who's head of occupational medicine at
22 our sister medical school, is a health and exposure
23 surveyor of Persian Gulf vets, and a major reason for
24 that survey, besides identifying risk factors, is to
25 identify veterans who we can invite to come to East
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1 Orange to participate in our research.
2 Now, project two is the project that I am
3 the PI, principal investigator on, and this really is
4 a project that allows me to build on the template of
5 chronic fatigue syndrome, because our center, our CFS
6 center for the civilians has been in existence since
7 1991, and we know a lot about the physiological and
8 psychological accompaniments of chronic fatigue
9 syndrome and so we can really build on that by not
10 asking unnecessary questions of our veterans.
11 And then project three -- and this is the
12 time line, so we're right -- we're in the heart of
13 project one right now, we're well into project two,
14 and project three begins after project two, and that
15 is to look at exertion and chemical stress on vets.
16 And the other project, the basic science
17 project, is one which is now ongoing to look at the
18 effects of genetics and stress on responses to toxins.
19 Now, there are certain things that are
20 sort of important about the way we put our center
21 together that I want to share with you.
22 First of all, as I've said already, that
23 our Gulf center is tightly interfaced with the two
24 centers in our medical school, the one, the NIH-funded
25 CFS Cooperative Research Center at our medical school
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1 and at the other medical school, the Robert Wood
2 Johnson Medical School, a similar NIH-funded set of
3 studies on chemical sensitivity.
4 That allows us, therefore, the ability to
5 compare the Persian Gulf veteran with chronic fatigue
6 and multiple chemical sensitivity to the civilian with
7 the same problems.
8 And then we have the control groups from
9 the NIH-funded center, so that instead of just
10 studying veterans with CFS and era vets that don't
11 have problems, we are then able to compare the veteran
12 with the civilian.
13 So, what should be obvious is that we are
14 focusing our attention on veterans that have two
15 problems, chronic fatigue and chemical sensitivity.
16 Obviously, as was discussed in the earlier
17 presentation, veterans do have other problems, but in
18 order to use our resources appropriately, we're
19 focusing on what seems to be a real problem, chronic
20 fatigue and chemical sensitivity, and using our
21 expertise in order to move the process ahead for the
22 veteran. And so, we can use specific hypotheses,
23 again based on ongoing studies with civilians.
24 Now, because the chronic fatigue and the
25 multiple chemical sensitivity patients in the
176
1 community are about eighty-five percent women, our
2 plan is to skew our subject selection toward women.
3 Only about seven percent of Gulf War military were
4 women, about fifty percent more than that are on the
5 registry, so women are over-represented on the Gulf
6 War registry, and our plan is to bring in even more
7 women than that so we have a direct comparison between
8 our veterans and our civilians with chronic fatigue
9 syndrome.
10 And last, that we then have this broad
11 multidisciplinary approach so that we can address many
12 of the issues related to chronic fatigue and chemical
13 sensitivity.
14 Now, let me just bring you to where we are
15 today at this meeting.
16 The call for proposals went out in January
17 '94 and about two weeks after we heard that the VA
18 wanted to establish centers, we decided to go the
19 mini-epidemiological survey route that I just reported
20 to you. So, we -- that was a considerable effort to
21 get the questionnaires out and get them back in the
22 short amount of time between the announcement and our
23 submission.
24 In October we learned that our center was
25 funded -- was approved, and funding was received
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1 several months thereafter. At the time of approval we
2 didn't have a Gulf War center at the East Orange
3 Medical Center and so significant construction and
4 alteration was necessary of a wing of the hospital
5 which was then dedicated with Dr. Kizer's visit in
6 April of '95.
7 From October -- really from January
8 through July we staffed and we then started buying the
9 equipment for the center, and we have -- and we
10 finished finalizing our protocols. And I'm delighted
11 to say that the last protocol finally went through the
12 IRB last month. So, all our protocols are now through
13 the IRB and are up and going.
14 We began seeing veterans in July. Our
15 epidemiological survey, which is mailed to twenty-
16 eight hundred registry vets, went out in September,
17 and we are now entering those data and will finish
18 data entry by early next month.
19 So, let me now turn the podium over to Dr.
20 Ottenweller.
21 DR. OTTENWELLER: The first project, as
22 Dr. Natelson mentioned earlier, is a fairly
23 substantial epidemiological survey of registry
24 veterans. We've mailed that to twenty-eight hundred
25 veterans, as he said, and it's designed to understand
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1 the range of the medical problems in the veterans, to
2 estimate the incidence of chronic fatigue and chemical
3 sensitivity, and importantly, to recruit potential
4 subjects for projects two and three.
5 This survey was in development for a
6 number of months. We initially formulated the
7 questions and brought in -- I think it went through
8 three different revisions with focus groups of
9 veterans to make sure that we were asking the
10 questions that we should be and that they understood
11 the form in which we were asking the questions.
12 The survey has been distributed in waves
13 and follow-ups with reminder postcards and second
14 mailings to non-respondents have taken place.
15 The questions that we asked are really to
16 characterize a whole series of parameters, and I'll
17 talk a little bit more about that in a minute, but to
18 collect demographic, psychosocial information and
19 medical data, looking both before and after their
20 service in the Gulf, and then to actually characterize
21 their experiences when they were in the Gulf.
22 And an overriding idea or approach that we
23 took in looking at this survey was not only to focus
24 on CFS and chemical sensitivity, but also with the
25 review of systems to let the veteran tell us what the
179
1 problems was, and I'll allude some more to that in a
2 minute.
3 It starts out, the survey, your staff is
4 provided a copy of that. I don't know if it's been
5 distributed to all of you. But it starts out with a
6 review of symptoms and importantly a rating of symptom
7 severity which is a little unusual in this kind of
8 survey. And it permits us to estimate the relative
9 severity of the symptoms when we compile this data and
10 to do some of the multi-factorial analysis that we're
11 going to do with it.
12 Then we take the approach of providing the
13 opportunity for the veteran to rank the top six
14 symptoms they had and to explore those in detail so
15 that we can ask questions about severity, time course,
16 how soon after the war ended did the problem arise.
17 And then in that section we also provide
18 the veteran with the opportunity to describe the
19 problems in more detail in their own words, again,
20 trying to understand more about the particular
21 symptoms and how they feel about them.
22 The next section of the survey allows us
23 to identify veterans who might be suffering from
24 chronic fatigue or chemical sensitivity and PTSD as
25 well, much like our earlier survey forms that Dr.
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1 Natelson talked about.
2 And then finally we asked them a series of
3 questions related to exposure during the Gulf and
4 their experiences, both stressful experiences as well
5 as chemical exposures and attitudes towards command
6 and how they were treated. Again, looking for items
7 that later we could correlate with the presence or
8 absence of specific types of illness.
9 We know that the latter are subject to
10 biases of self-report, but we feel it's important to
11 collect this data, and we will be assessing the DOD
12 database on unit deployment to try to supplement this
13 exposure information that we're getting from the
14 veteran.
15 To date we've received about fourteen
16 hundred responses, and that represents a just over
17 fifty-percent response rate, but they're still coming
18 in. We expect to attain our target of sixty percent
19 response rate. Data entry is proceeding and should be
20 completed in the middle of next month, and we expect
21 to have the full analysis of that data done by the end
22 of this year.
23 The second component that we're working
24 with here in project one, again, is to identify
25 veterans for participation in project two, a detailed
181
1 physiological and psychological assessment of Persian
2 Gulf veterans, again, driven by our work with
3 chemically sensitive and chronic fatigue patients,
4 civilian patients.
5 Dr. Natelson has described the CFS and
6 chemical sensitivity criteria that we use. We'll be
7 expecting to get four groups, those with CFS alone or
8 chemical sensitivity alone, a combined group because
9 of the significant overlap between them, and a group
10 of health control subjects that will also be Persian
11 Gulf veterans.
12 So, I thought I'd just show you very
13 quickly how we intend to screen for the healthy
14 veterans, because they will have been deployed
15 veterans. They will not be sick with a fatiguing
16 illness or other serious medical illnesses, not taking
17 any significant medications, no prior treatment for
18 some psychiatric disorders. And again, in terms of
19 our questionnaire, not responding as if they have
20 chemical sensitivity.
21 When he went over all of the symptoms,
22 we're asking our healthy group not to endorse any of
23 those symptoms for chemical sensitivity or for chronic
24 fatigue. We might have gone overboard in that, but it
25 turns out that we've been successful at identifying a
182
1 significant number of healthy veterans that will be
2 sufficient for the size of the control group that
3 we'll be studying here.
4 The first part of this study will look at
5 -- as we bring these patients into the East Orange VA,
6 they get a very thorough medical evaluation
7 specifically by physicians trained in looking at
8 chemical sensitivity and chronic fatigue. When we do
9 the surveys and identify these people again, we're not
10 making a diagnosis and they will not be entered into
11 the further parts of our study until this phase
12 wherein the face-to-face interview the clinician will
13 make the affirmative diagnosis of chronic fatigue or
14 chemical sensitivity.
15 We're also looking for any other medical
16 problems at that that time that they might have. And
17 blood samples are drawn and tested to rule out any
18 other potential causes of fatiguing illness, thyroid
19 screens, ANA for rheumatoid arthritis, and a series of
20 lyme tests and a series of exclusion criterion that
21 were used.
22 They receive a complete psychiatric
23 evaluation as part of this medical evaluation by a
24 clinical psychologist, and it's to determine the
25 presence of any illnesses that are, again, the
183
1 exclusion criteria for studies of chronic fatigue and
2 chemical sensitivity, as well as making specifically
3 a diagnosis of PTSD and other mental illnesses.
4 Then if the subject is not excluded at
5 that point, they'll go on to the other parts of this
6 study.
7 The first one is looking for potential
8 viral and immunological factors that might be present
9 in Persian Gulf veterans. Again, those with chemical
10 sensitivity and chronic fatigue compared to the
11 healthy veteran.
12 And we're looking in terms of viral
13 factors at Epstein Barr virus, cytomegalovirus and
14 HHV-6 and 7 now, and we will probably be adding HHV-8
15 that's just been recently identified. And we're
16 looking for the presence of those viruses in mRNA, or
17 mRNA for those viruses extracted for peripheral blood
18 lymphocytes.
19 In addition to that, we're also assaying
20 cytokine messenger RNA in the peripheral blood
21 lymphocytes to look for signs of covert infection.
22 You've often heard about the problems -- I presume the
23 problems about diagnosis leishmania and the fact that
24 there are presumably people that have it and you can't
25 pick up the pathogen. But an infection like that
184
1 should alter the ratios of some of the cytokines and
2 we should then be able to get an index or an idea
3 about whether there might be covert infection.
4 And in addition to that, both the viruses
5 that we're looking at and the cytokine have all been
6 hypothesized to be connected with chronic fatigue
7 syndrome. In particular, for the cytokines, that came
8 about with therapies where they were treated with IL-2
9 and interferon gama in clinical trials and induced
10 severe fatigue in the patients,in addition to some of
11 our findings in civilian populations where some of
12 these cytokines might be elevated.
13 The next step is to do a thorough
14 psychiatric/psychological behavior, a
15 neuropsychological evaluation of these four groups,
16 and in particular we're examining, for example,
17 lifetime traumatic experiences to determine whether a
18 history of trauma prior to the war might have
19 contributed to the development of illness after the
20 war.
21 In addition, we're studying coping
22 strategies and social support structures before and
23 after deployment to see if those might have influenced
24 the development of illness.
25 In addition to that, all subjects will
185
1 receive an MRI which we have reported in several
2 studies to be abnormal in a significant population of
3 CFS patients, and the results there will be correlated
4 with the performance on a battery of
5 neuropsychological tests aimed at uncovering
6 information processing and memory deficits. Again,
7 what we've done is taken the specific findings on
8 civilian CFS patients and where we know these tests
9 are abnormal and are checking to see if they're also
10 abnormal in the Persian Gulf veteran with fatigue.
11 The fourth part of this study is to look
12 at autonomic factors and stress reactivity. We have
13 noted, as have others, an autonomic disregulation in
14 chronic fatigue. In particular, the Baltimore group
15 at Hopkins doing tilt testing on chronic fatigue
16 patients. We started doing tilts before they
17 published their information because we also had
18 developed data of autonomic dysfunction.
19 And we then have developed a series of
20 tilt tests, pace breathing and valsalva maneuver to
21 assess potential abnormalities in autonomic function.
22 And what we've seen in the civilian CFS patients is a
23 presumptive hypovagal state, and we can assess that by
24 looking at the EKG signal through the mathematical
25 techniques of heart rate spectrum.
186
1 In addition, we're looking at
2 cardiovascular reactivity to cold presser tests --
3 that's an ice pack on the forehead -- speech
4 preparation and mental arithmetic. And our hypothesis
5 is that although we may see normal autonomic function
6 basally, under the face of some of these challenges we
7 may uncover an autonomic dysfunction that occurs to
8 the people when they undergo a cognitive stressor or
9 a physical stressor, and that that autonomic
10 dysfunction contributes to their fatigue, that they
11 can't maintain that level of activity because
12 something goes wrong.
13 As the final part of this project, and
14 actually at the time of the medical exam, the veterans
15 will receive a caffeine breath test which assess his
16 hepatic cytochrome P450 IA2 activity in the liver.
17 And the purpose of this test is to provide a
18 cumulative estimate of exposure to aromatic
19 hydrocarbons over the past four to five years. This
20 enzyme remains up-regulated for that long. The
21 problem is that it's only been validated for some very
22 high exposure situations, and what we're attempting to
23 do, then, is to see if we can detect low exposure,
24 relatively low exposure to the aromatic hydrocarbons
25 and see then if that might distinguish or if that's
187
1 correlated first with what we can get from exposure
2 assessment and then ultimately to provide an objective
3 marker for low-level exposures to the aromatic
4 hydrocarbons.
5 We've now seen thirty-two veterans in our
6 center for project two, and they're at various stages
7 of going through each of these protocols that I've
8 described. Our goal is to study about fifty subjects
9 in each of the four study groups over the course of
10 this project. And although we have accumulated some
11 data, we would clearly prefer not to comment on that
12 at this time for fear that might change as we
13 accumulate reasonable numbers of subjects in each of
14 those groups.
15 Does anybody have any specific questions
16 they'd like me to stop here or to go on to the next
17 set of studies?
18 CHAIRWOMAN LASHOF: Let's stop at this
19 point and take questions now.
20 Okay. I guess you can go ahead. You're
21 doing a good job so there are no questions.
22 DR. OTTENWELLER: Oh. Okay.
23 Project three is scheduled to start next
24 year, and it's designed to probe reactivity to
25 environmental challenges, including chemical exposures
188
1 and exertional stress.
2 Again, the idea is the reactivity to these
3 challenges either in the environment or with exertion
4 produce an abnormal response in the civilian CFS and
5 chemically sensitive patient, and the question is do
6 we see that same kind of maladaptive response in the
7 Gulf veterans with these two particular problems.
8 I'll make it a little easier for you to
9 read there.
10 The first part of this project, the
11 chemical exposures, will be done at EOHSI down in
12 Piscataway, New Jersey, in their new state of the art
13 human exposure facility. The central issue to be
14 addressed is whether one can identify specific
15 objective responses to chemical exposures in
16 chemically sensitive individuals. What we're trying
17 to do here is separate psychological factors related
18 to both the expectation of chemical exposure and the
19 perception of that exposure from objective indications
20 of responses to the chemical. In the first set of
21 studies we're going to do inhalation exposures to
22 phenyl ethyl alcohol at 7 ppm. Phenyl ethyl alcohol
23 is what gives perfumes the sense or the smell of
24 roses, and it's very common. It's not just in
25 perfumes that smell strongly of roses, but it's mixed
189
1 into almost all perfumes that are combination smells.
2 And a lot of chemically sensitive people report
3 sensitivity to this odor.
4 The second part of this -- and we're going
5 to be measuring them before exposure to look at
6 anticipation, and then to see whether we can get a
7 different response once they actually are exposed to
8 the odor.
9 Some studies like this have been done in
10 chemically sensitive patients and the whole question
11 there becomes whether what you have is a psychological
12 perception that induces a physiological response.
13 We're hoping to get around that by doing a double-
14 blind dermal exposure in these people so that we can
15 use the same substance and induce the same body burden
16 with a patch on the skin that will deliver the phenyl
17 ethyl alcohol transdermally and reach the same levels
18 in the blood without the subject being aware that
19 they're being exposed to the chemical.
20 It'll be a double-blind crossover placebo
21 type of design. And then again, the idea is to
22 measure objective responses without the perception of
23 exposure to the chemical.
24 We'll be looking at physiological,
25 psychological and physical symptoms. Do they report
190
1 that they are being exposed to the PEA instead of the
2 placebo?
3 We'll be looking at cognitive function
4 using a continuous performance task before, during and
5 after the exposure.
6 And then in addition we're looking at
7 cardiovascular and respiratory responsiveness
8 indicative of autonomic arousal, again to see if we
9 can find objective evidence in this double-blind
10 design.
11 We're looking at nasal resistance and also
12 with nasal lavage looking at immune kinds of responses
13 in the nasal epithelium.
14 The second part of this study deals with
15 exertional stress and fatigue. These people report
16 chronic fatigue. We'll be doing primarily that study
17 in chemically sensitive patients, or subjects. In the
18 second part of this we'll be mainly focusing on
19 chronic fatigue subjects.
20 And what happens in those people is if
21 they make a trip to the supermarket or relatively mild
22 exertion, it can put them in bed for days. You and I
23 could recover from that even relatively moderate
24 exertion in a couple of hours and they might be out
25 for weeks.
191
1 And so what we're going to do is to take
2 these people and give -- and we've successfully done
3 that in the civilian population -- and give them a
4 maximal exercise test, and then give them -- follow
5 that with a sub-maximal treadmill exercise. It gives
6 them a standard workload, relative workload. We're
7 going to work them at about seventy percent of their
8 VO2-max for about thirty minutes on a treadmill.
9 That gives us a standard stimulus, an
10 exercise stimulus across groups, even if their
11 absolute workloads are very different between the two
12 groups.
13 And then we can look at hormonal and
14 cytokine responsiveness to exercise. In fact, we're
15 going to look at the same cytokines I outlined for
16 project two just a minute ago, and we're looking at a
17 series of hormones including adrenal cortical
18 hormones, catecholamines from the adrenal medulla,
19 growth hormone, prolactin; again, a number of hormones
20 whose abnormal function can be associated with
21 prolonged fatigue. And the same thing with the
22 cytokines.
23 We're just in the process. We've finished
24 collecting the samples but not doing the assays yet on
25 a study exactly like this in our civilian CFS
192
1 patients, and what we're going to do then is use that
2 to pare down and select specific parameters that we
3 will look at in the Persian Gulf veterans, and instead
4 of the largely exploratory nature of this project in
5 civilian chronic fatigue patients where we're looking
6 at twenty or thirty different parameters in them.
7 In addition to that, we're looking at this
8 prolonged fatigue and we're looking at cognitive
9 impairment. We find -- I'm fairly certain that we
10 find now that subjects after one of these exercise
11 challenges will have some significant cognitive
12 impairment. That is the mental problem, the
13 concentration and memory problems reported by those
14 with chronic fatigue may be associated with the
15 physical aspects of their fatigue somehow flowing over
16 into their cognitive processes.
17 In addition to these studies on exercise
18 tolerance, we have used the resources of our center to
19 collaborate with a group at the University of
20 Pennsylvania to study bioenergetics using their large
21 magnet facility down there. We've been doing that for
22 the past three years in civilian CFS patients and a
23 small group of fatigued veterans were seen there, and
24 we found actually very significant deficits in
25 oxidative metabolism in the mitochondria from those
193
1 severely fatigued veterans which are indexed in vivo
2 in a working calf muscle inside the NMR magnet.
3 And we heard last week, actually, that the
4 Department of Defense has funded those studies for
5 three years now to examine muscle function in the
6 fatigued veterans that will go through this part of
7 the project of our center, so that some of our
8 veterans then will go down to Philadelphia with a
9 detailed assessment of muscle strength and function
10 and looking at oxidative metabolism.
11 Project four is an animal basic science
12 project that's an attempt to get a handle on the
13 perplexing problem of why some veterans in a military
14 unit, the first, the eighth and the twelfth veteran or
15 service person became ill and yet other people are
16 perfectly healthy in between there.
17 And from our work in behavioral medicine
18 and stress, we hypothesize that there might have been
19 individual differences in susceptibility to stress
20 that might have caused some veterans to over-respond
21 to stress and that that inappropriate stress response
22 made them more vulnerable to environmental exposures.
23 In the case of veterans, such differences
24 in susceptibility may be due to the psychosocial
25 factors or coping strategies or others that we've
194
1 explored retrospectively in project two.
2 Instead, in project four we're using a
3 genetic difference between two strains of rats. The
4 rate that we've been studying for the last, oh,
5 fifteen or twenty years, the Sprague-Dawley rat, but
6 in comparison to the Wistar-Kyoto rat which is a
7 genetic strain which are stress hyperresponsive
8 compared to the Sprague-Dawley rat.
9 What we're doing is superimposing upon
10 that difference in responsiveness our chronic stress
11 model that again we've been studying where we stress
12 rats for three consecutive days, and what we're
13 interested in here is not the acute response to
14 stress, but we're interested in those responses or
15 persistent responses that last anywhere from twenty-
16 four hours up to two or three weeks after the stress
17 is over, reasoning that the longer you get an abnormal
18 physiology after stress, the more pathogenic capacity
19 that disturbed physiology might have.
20 We've already collected extensive
21 neuroendocrine, physiological and immunological,
22 biochemical, behavioral and cognitive data on Sprague-
23 Dawley rats over the past ten years, and we're now
24 comparing those responses to WKY rats. We had
25 originally proposed, if you've looked at our original
195
1 proposal, to look at whether these responses, these
2 stress responses modified the toxicity of nerve gas
3 agents and dioxins.
4 However, we've revised our -- if you -- in
5 terms of the chronology, the grant was prepared before
6 the NIH consensus conference or a number of other
7 conferences, and as we attended those conferences we
8 were convinced that there is less likelihood that the
9 Persian Gulf veterans were exposed to nerve agents
10 than at the time we prepared the proposal. And
11 there's been increased interest now in the possibility
12 that pyridostigmine bromide might be contributing to
13 the problems.
14 So, what we've done is switched over and
15 looked at the idea that this stress and genetic
16 background might modify the response to the
17 pyridostigmine in the veteran.
18 This points to one of the important facets
19 of our center, and that is we wrote a very narrow,
20 well-defined proposal but that we're getting
21 continuing updating of information about potential
22 exposures from our surveys, from the hearings of your
23 committee, and that what we've done then is to put in
24 place a team of people that can adjust to various
25 findings and can then move off of that to help to
196
1 solve the new problems that might be identified by
2 subsequent research.
3 Although it's not central to your mission,
4 one of the purposes of the VA in establishing these
5 Environmental Hazards Centers was to have an ongoing
6 program in place so that they could address new
7 environmental problems that our servicemen might face.
8 If something, for example, comes back from Bosnia,
9 these centers will be in place to address that
10 quickly, the infrastructure will be there to go
11 forward with that.
12 Your task to us specifically asked us for
13 recommendations. If you'd like, I'd stop now and
14 address any questions about the experiments that were
15 going on. The last -- I have just one more figure to
16 talk a little bit about specific recommendations that
17 we might have.
18 CHAIRWOMAN LASHOF: I think we'd better
19 stop and get the questions. You're really -- we've
20 hit our time limit, but we got started a little late
21 so we'll give you a little more time to give us the
22 recommendations.
23 Does anyone have any questions?
24 I have a couple myself while the rest of
25 the committee is thinking about some more.
197
1 Back to your first study you presented
2 where you're looking at some of the viral and
3 immunologic and etiologic aspects, have -- are you
4 familiar with the work of Garth Nicholson and his
5 postulative mycoplasma?
6 DR. NATELSON: I'm aware of the postulate.
7 I have not seen the data.
8 CHAIRWOMAN LASHOF: And you at this point
9 are not looking for or trying to coat tromycoplasma.
10 DR. NATELSON: We're not, Dr. Lashof.
11 Here's our logic.
12 CHAIRWOMAN LASHOF: Are you able to if you
13 thought this was necessary?
14 DR. NATELSON: Well, we're collaborating
15 with the chair of microbiology at Stonybrook and we
16 would be able to adjust -- and we have already
17 adjusted -- his interest has been in the herpes virus
18 family, and of course our interest in the herpes virus
19 family is these are viruses that infect, go latent and
20 become reactivated.
21 And so what we're really doing is looking
22 across the herpes virus family, across Epstein Barr,
23 CMV, and now the newly described human herpes virus 6
24 and 7. And that was targeted because of the idea that
25 chronic fatigue syndrome may be reactivated herpes
198
1 virus because there is that infectious and that flu-
2 like component to the illness.
3 So we really again, I think my colleague
4 Dr. Ottenweller made clear that we have the ability in
5 our center to make coarse changes, and we have been
6 able to build bridges and those include
7 microbiological and immunological bridges with people
8 that have tight liaisons with people outside of the
9 herpes virus area. So if it looks like mycoplasma is
10 going to be a tenable candidate, yes, we would be able
11 to make appropriate changes.
12 CHAIRWOMAN LASHOF: Thank you.
13 You've been looking at chronic fatigue
14 syndrome for some time. Do you have any hypotheses as
15 to the etiology, obviously of the herpes? There's one
16 you've mentioned. Are there others that you think are
17 hot prospects that you're actively pursuing?
18 DR. NATELSON: Well, Dr. Lashof,
19 hypotheses as you know are a dime a dozen, and proving
20 the hypotheses, the elbow grease, that's, you know,
21 that's the hard part. So, I don't like to speculate.
22 I mean, you know, there are hypotheses still -- this -
23 I picked up Neurology Magazine yesterday and saw --
24 read an editorial about fibromyalgia, which we believe
25 is just a rheumatologist's name for chronic fatigue
199
1 syndrome, in which he again -- this particular person
2 views it as no problem, somatization, hypochondriasis.
3 So, we have this extreme political range. It's like
4 politics, you know, from the extreme left wing to the
5 extreme right wing, where the extreme left wing is
6 that these people are shirkers, and the extreme right
7 wing it is one sole virus.
8 And I think that what we've tried to do in
9 the NIH-funded center is to not worry about the ink on
10 the page but to ask the testable questions. And our
11 advances in the civilian population seem to be the way
12 medicine always advances. What it is is careful
13 description and then the use of stratification.
14 Obviously if you took a hundred patients with sore
15 throat back in 1944 or '38 when penicillin was found
16 and you treated them and only ten got better, that
17 would not make the front page of the Times. But if
18 you took those ten patients, the ten out of a hundred
19 that had culture-positive strep and you gave them
20 penicillin and all ten got better, okay, that would be
21 very, very important.
22 So, what we've done is we've stratified in
23 our civilian population based on mode of onset, is it
24 sudden or gradual, and based on the presence or
25 absence of an axis one disorder.
200
1 And we have data that are really just
2 tentative but that suggest that that is a wise way to
3 go.
4 The one thing that we have now put
5 together in a manuscript is the cognitive testing in
6 those stratified -- again, these are civilian patients
7 with CFS. And importantly to me as a neurologist, the
8 group of patients that has the greatest difficulty in
9 cognitive processing is the group of patients that has
10 no evidence of any psychiatric problem at all.
11 Now, I must hasten to say that the
12 cognitive problems that we are able to document by
13 careful neuropsychological testing are not great; they
14 are statistically significant, they exist. We are not
15 talking, thank God, about a dementia here. But the
16 patient is disabled by this. This is a very
17 disruptive process.
18 But, in other words, if the group of
19 patients that has the more -- the more significant
20 cognitive processing problem are the group without any
21 psychiatric problem, that suggests to me that they
22 have an encephalopathy. So that's the group now, see,
23 we're coning down from a syndrome which is a set of
24 signs and symptoms that's very large, using the
25 stratification techniques to develop a more homogenous
201
1 group, and that's the group then that we're willing to
2 bet will have the kind cytokine or viral abnormality
3 that might be watered down if we didn't stratify.
4 So that's the tactic that we've used in
5 the civilians and that we're going to apply exactly
6 the same to our veterans.
7 CHAIRWOMAN LASHOF: Okay. Thank you.
8 And another question on your environmental
9 group. The MCS group of patients that you're
10 considering. We heard last month -- I guess it was
11 earlier this month, wasn't it -- from Claudia Miller,
12 Dr. Claudia Miller, about the need to have an
13 environmentally clean room, specially constructed room
14 to try to test. What's your reaction to the need for
15 that and how do you feel we'll get any closer to being
16 able to define MCS?
17 DR. OTTENWELLER: We have, in fact, been
18 in the phase, began before the center began, of
19 constructing just such a facility. That's the human
20 exposure facility that we talked about down in
21 Piscataway, New Jersey, that has like GC meospecs on
22 the input line and the output line of all the air flow
23 to this. It's all stainless steel. There's no
24 fabric.
25 We had to go through special precautions
202
1 to put a computer monitor in there to do our
2 continuous performance testing. That has to be
3 separately sealed off and vented separate from the air
4 to the rest of the room.
5 And it seems to us that bringing the
6 patient in for, you know, a half a day or a day's
7 worth of study where they're bringing stuff from the
8 environment in with them, car exhaust fumes just to
9 get to the facility, it's important for us to get that
10 -- to have the facility as clean as possible for those
11 people, particularly to get perhaps what may be
12 relatively small changes to be measured in the
13 laboratory under these artificial situations.
14 So, that facility is up and in the past --
15 about a month ago it received the full IRB approval
16 which was exhaustive, to say the least, to expose
17 people to some noxious odors, not what we're doing but
18 for some other work there. And so we think it
19 provides us with the facility to do -- I keep asking
20 people, but I believe still for the first time, these
21 double-blind control studies that will really get us
22 at the objective responses in chemically sensitive
23 patients for the very first time anywhere.
24 CHAIRWOMAN LASHOF: Thank you very much.
25 Other questions? Anyone?
203
1 Okay. What about your recommendations?
2 We'll move right along.
3 DR. OTTENWELLER: Okay. When chartered
4 with this and having attended a number of these
5 conferences, we've thought hard about what would help
6 us and the veteran. And one of the problems is that
7 we recognize that the Department of Defense isn't
8 tasked particularly with some of the recommendations
9 that we're going to make. But I would make the case
10 that what we've seen here in terms of the registry is
11 that approximately five to ten percent of veterans
12 returned from the Gulf and have medical problems that
13 they associate with their service there.
14 And the publicity surrounding these
15 medical problems is perfectly appropriate, but it may
16 lead to problems recruiting soldiers in the next war.
17 A number of early respondents to our
18 survey have said that they specifically have put off
19 having children -- I believe somebody told you this
20 morning -- because of fears that their children may
21 have medical problems related to their parent's
22 service in the Gulf. If those kind of fears and the
23 fears of unknown environmental exposures and depleted
24 uranium become large, then there's going to be major
25 problems in recruiting young men and women for the
204
1 next war.
2 So, I think that not only this Committee
3 but the DOD needs to really consider some of the
4 things that we would recommend.
5 The first recommendation is that the
6 Environmental Hazards Centers that you've heard about
7 from Bobby White and Dave Ozonoff and you'll hear from
8 Peter Spencer about the Portland work, they've
9 established a really substantial infrastructure,
10 experimental approaches to the problems that have been
11 reviewed by outside reviewers, they're collecting a
12 lot of medical information. We've established
13 personal contacts with large numbers of Persian Gulf
14 veterans, and they should really be viewed as a
15 tremendous resource for addressing the ongoing
16 problems of these veterans.
17 It is hoped that there will be a
18 continuing commitment to these centers and the use of
19 them to catalyze other projects that will bring even
20 more expertise to bear on the medical problems the
21 veterans face.
22 For example, in our HIH-funded
23 cooperative research center for CFS there's a program
24 where there's a certain amount of money set aside, not
25 a large amount, but where the local CFS centers review
205
1 and monitor pilot projects for unexpected new problems
2 that arise or approaches that might be productive, and
3 some kind of idea -- again, thinking of these
4 Environmental Hazards Centers as a regional resource
5 we think is important.
6 For example, again, we've leveraged some
7 of our resources in our center into collaboration with
8 experts on muscle physiology that were really very far
9 beyond the scope of our original center proposal. And
10 it might help if this coordination and outreach could
11 be supported explicitly in some kind of way.
12 There's been a lot of discussion in your
13 preliminary review and in the recent oversight
14 committee looking at AIDs research at NIH about the
15 issue of coordination of research efforts and
16 oversight. And we clearly recognize it's important to
17 reduce redundancy and make sure that absolutely the
18 best science and the most appropriate research is
19 being done. But the three hazard centers do talk
20 monthly in phone conference and have met two or three
21 times and have had much discussions about the issue of
22 standardization of questionnaires and research
23 tactics. And we as a group have decided that too much
24 standardization may cause us to really miss some
25 important, subtle factors that might be contributing
206
1 to the Persian Gulf veterans.
2 Again, we have this coordination, but
3 slight differences in the way we ask questions on
4 questionnaires or the framework, where in the
5 questionnaire the question appears may reveal some
6 subtle nuances that if everybody's asking all the
7 identical same questions that you could really miss.
8 In terms of the issue of duplication of
9 research, that should be held to a minimum, but we
10 should recognize the fact that different research
11 teams will bring different expertise to the same
12 problem. And, again, who knows which particular
13 approach is going to be a breakthrough?
14 We know it's crucial that there be
15 coordination and oversight, but it need not become an
16 end in itself.
17 We've studied ---
18 CHAIRWOMAN LASHOF: I'm going to have to
19 ask you to ---
20 DR. OTTENWELLER: The last two are real
21 short.
22 That we should get more help from the DOD.
23 The idea is to set up prospective plan studies on the
24 ground before deployments so that we can collect
25 medical information before and after their deployment.
207
1 We think that there's a problem with
2 education in terms of the military personnel at the
3 unit level understanding what the specialists know
4 very well about pyridostigmine, for example, or DEET
5 and other pesticides.
6 And I would echo some of the concerns that
7 might have been raised by David Ozonoff earlier about
8 needing just better assessment exposures. Without
9 better assessment we're going to have more of a
10 problem linking specific exposures to specific
11 illnesses that will occur.
12 Thank you.
13 CHAIRWOMAN LASHOF: Thank you very much.
14 We appreciate your coming, and it really is
15 interesting work, and we wish you the best and hope
16 you get lots of answers in a hurry.
17 Now we will hear from the Center for
18 Research and Occupational Environmental Toxicology and
19 the Portland VA Medical Center, Oregon State -- Oregon
20 Health Sciences University. Dr. Bourdette and Dr.
21 Spencer.
22 Is Dr. Bourdette going to be joining you,
23 Dr. Spencer, or ---
24 DR. SPENCER: Dr. Lashof, unfortunately
25 Dr. Bourdette is unwell and has been unable to travel
208
1 to Boston. He sends his apologies. And I will do my
2 best to represent the center.
3 CHAIRWOMAN LASHOF: Very good. Go ahead.
4 DR. SPENCER: Just by introduction, my
5 name is Peter Spencer. I'm a U.K. born American
6 citizen. I'm currently a Professor of Neurology and
7 Director and Senior Scientist at the Center for
8 Research on Occupational and Environmental Toxicology
9 at the Oregon Health Sciences University. I therefore
10 represent the university side of this VA/university
11 enterprise.
12 Dr. Bourdette is the Medical Director of
13 the Portland Environmental Hazards Research Center.
14 Dr. Bourdette is Acting Director of Neurology at the
15 Portland VA Medical Center.
16 Dr. Bourdette, therefore, and I share the
17 responsibility of leading an interdisciplinary team of
18 medical scientists. The acronym for our center,
19 PEHRC, PEHRC has established a close relationship with
20 the Director of the Portland component of the Gulf War
21 Veterans' Registry to facilitate the care and
22 treatment of symptomatic veterans. And our center was
23 reviewed by independently appointed committees of
24 medical scientists prior to its inception and again in
25 March 1996.
209
1 The center's mission is to address the
2 impact on human health of environmental hazards
3 encountered in military service -- past, present and
4 future -- with particular initial focus on unexpected
5 illnesses associated with service in Southwest Asia
6 during the Persian Gulf War. Unexpected illnesses
7 include (1) "viscerotropic" leishmaniasis and (2) a
8 constellation of symptoms designated here as Persian
9 Gulf War Unexplained Illness or Illnesses. The long-
10 term research goal is to develop a solid understanding
11 of the nature of these conditions, their risk factors,
12 and their treatment and prevention. The broad array
13 of fundamental research at PEHRC is supplemented by
14 educational activities, firstly to enrich the training
15 and experience of participating researchers, thereby
16 improving the clinical sensitivity of basic scientists
17 and the scientific rigor of physicians and nurses
18 within the center; and secondly, to respond to the
19 needs of veterans and the public for accurate
20 information and interpretation of data relating to the
21 health effects of environmental hazards associated
22 with military service.
23 The center's research focus concerns
24 environmental factors encountered in military service
25 that pose a threat principally to the neurological and
210
1 musculoskeletal systems; these systems being
2 associated with the dominant symptoms (fatigue, muscle
3 and joint pain, cognitive complaints) of the
4 unexplained illnesses. The gastrointestinal,
5 integumentary and other systems involved in
6 unexplained illnesses also receive research attention.
7 The program seeks to elucidate, in a coordinated
8 manner, the health impact of a wide range of exogenous
9 exposures encountered in the wartime theater.
10 PEHRC comprises, firstly, an Epidemiology
11 and Medical Research Core at the top center; secondly,
12 a Protozoal Disorders Study; and, thirdly, four
13 projects involving clinical and basic research.
14 Projects one and two conduct clinical research with
15 the Research Core, respectively addressing
16 perturbations of higher cortical function and the
17 neuroendocrine basis of unexplained illness
18 musculoskeletal symptoms as they relate to
19 fibromyalgia. Projects three and four carry out
20 fundamental research on the toxicology of selected
21 environmental substances pertinent to the battlefield
22 experience of Persian Gulf War veterans and to
23 military service in the future. The Medical Director
24 oversees the clinical research aspects of PEHRC and
25 has specific responsibility of human subjects enrolled
211
1 in the research programs within the center. The
2 Scientific Director establishes and oversees the
3 research direction of the center. And the center
4 operates under the guidance of an External Advisory
5 Committee composed of national and international
6 experts in medical epidemiology, biostatistics and
7 survey design, infectious disease -- this person is
8 yet to be named -- clinical neuropsychology,
9 toxicology, tropical neurology and cellular
10 neurophysiology. The External Advisory Committee
11 operates both on an informal basis, consulting on
12 specific issues as needed, and a formal basis, with
13 representation at PEHRC Scientific Retreats. The
14 research effort of the center is shared with a Public
15 Advisory Group consisting principally of
16 representatives of veterans' service organizations.
17 Dr. Linda Shortridge-McCauley of CROET, in
18 concert with a second epidemiologist, Dr. Sandra Joos
19 of the VA Medical Center, together with the Medical
20 and Scientific Directors, leads the center's
21 population-based epidemiological survey and case-
22 control clinical study. This is designed to identify
23 risk factors for unexplained illness in those from the
24 northwest United States who were deployed in the
25 Persian Gulf region during the approximately one-year
212
1 period following August 1990. We seek to determine
2 why some veterans who were in Southwest Asia for
3 Desert Shield, Desert Storm and/or desert clean-up are
4 now healthy, that is controls, while others have
5 symptoms and represent cases. The primary research
6 question is thus framed: Are there differences
7 between cases and controls in relation to individual
8 subject factors and environmental exposures in the
9 Persian Gulf theater of war? Environmental exposures
10 in-theater will be educed by, one, stratifying
11 subjects by their deployment period, that is Desert
12 Shield only, Desert Storm only, desert clean-up only,
13 or combinations of the foregoing.
14 Each of these is associated with a unique
15 set of exogenous factors, and by separating these
16 clean deployment periods we believe that we will have
17 a better chance of making associations between illness
18 and exposures; secondly, examining the geographical
19 location in the Persian Gulf within the specific
20 deployment periods; and thirdly, assessing the duties
21 and self-reported data on exposures in the Persian
22 Gulf.
23 This is entirely hypothetical, but it will
24 give you an idea of the type of approach that we're
25 seeking.
213
1 By separating individuals into pre-combat,
2 combat and post-combat periods, and then by crossing
3 that with geographical location, we will -- we hope by
4 determining the distribution of cases by space and by
5 time, begin to get some idea as to whether or not
6 there is any temporal clustering within space or time
7 which may lead us down a particular pathway to focus
8 on specific environmental subsets of exposure.
9 Subsets of environmental exposures.
10 The detailed design of our epidemiological
11 study and case-control study of northwest Persian Gulf
12 veterans has been supplemented by pilot and
13 feasibility studies conducted in three phases. Phase
14 one comprised the execution and analysis of detailed,
15 open-ended interviews with Persian Gulf War veterans
16 reporting a range of symptoms and diverse exposures in
17 the theater of war. Taped transcripts were analyzed
18 for themes relating to knowledge of exposure to
19 chemical, biological, physical and psychosocial
20 factors. Those interviewed and other veterans who
21 generously volunteered their time commented on
22 specific items planned for inclusion in the study
23 questionnaire. The questionnaire was completed and
24 pre-tested, approval was received from the VA and
25 Oregon Health Sciences University human research
214
1 review boards, and the proposed instrument was
2 submitted to the Office of Management and Budget as
3 required which judged the instrument superior to
4 related questionnaires submitted for review at that
5 time.
6 Phase two consists of the development of
7 a working case definition of unexplained illness based
8 in part on an analysis of symptoms recorded on 388
9 forms of registrants in the Portland component of the
10 VA Gulf Veterans' Registry. Our cases must have at
11 least one of the following leading symptoms, that is,
12 greater than ten percent registry prevalence: muscle
13 and joint pain, cognitive changes, abdominal pain with
14 or without diarrhea, skin and/or mucous membrane
15 lesions or unexplained fatigue. Symptom onset must
16 have occurred during or following the Persian Gulf
17 War, persisted for at least one month and be present
18 during the three-month period preceding clinical
19 examination by PEHRC staff. Analysis of medical
20 records of a subset of Portland veteran registrants,
21 that is 222 subjects, revealed that only nineteen
22 percent had symptoms which were fully explained by the
23 coded registry diagnoses, substantially lower than the
24 percentage reported nationally.
25 Phase three was a feasibility study of a
215
1 random sample of 422 Persian Gulf War veterans drawn
2 from a Department of Defense Manpower Data Center data
3 tape of Oregon and Washington residents. These
4 veterans received a mailed questionnaire describing
5 the proposed plan for a formal epidemiological survey.
6 Potential response rates and barriers to participation
7 in the planned study were identified, and appropriate
8 modifications introduced into the research protocol.
9 The final survey which commenced in December 1995 is
10 representative of the geographical distribution of all
11 Oregon and Southwest Washington residents in the DOD
12 database who are eligible for our study. Sampling
13 strategies and power analyses for this survey were
14 developed with the assistance of a survey specialist
15 and a biostatistician who were both independent of the
16 center. Standard algorithms are used to identify
17 potential cases and healthy controls from the sample
18 responding to the mailed survey. Potential cases and
19 controls are recruited for a comprehensive clinical
20 and neurological examination, including Leishmania
21 tropica screening, and assessed for psychological,
22 neurobehavioral and psychosocial factors in project
23 one, and fibromyalgia, project two. Samples of blood
24 and skin will be taken for additional studies,
25 including those related to cellular DNA damage and DNA
216
1 repair and blood will be stored for potential future
2 studies as needs arise.
3 The epidemiological survey is being mailed
4 to -- in stages to approximately 3,000 northwest
5 Persian Gulf War veterans in '96-'97. From those who
6 respond, a total of 250 cases and 250 controls will be
7 recruited for the clinical case-control study. We
8 have achieved a satisfactory questionnaire response
9 rate from the first mailing wave, all 387, and we have
10 begun clinical assessment of cases and controls. Our
11 goal is to examine 20 subjects per month. A team of
12 clinicians conducts the examinations and obtains
13 specialized consultation as necessary. The Portland
14 VA Medical Center has assumed responsibility for the
15 majority of the clinical screening costs, and the
16 Occupation Environmental Toxicology Center at the
17 University has contributed support staff, travel and
18 consultant costs, and the facilities of its Toxicology
19 Information Center.
20 Multivariate analyses will be conducted to
21 compare cases and controls with respect to deployment
22 period, geographical location, self-reported exposures
23 and psychophysiological factors. These analyses
24 should allow us to develop a hierarchical risk profile
25 for Persian Gulf War unexplained illnesses.
217
1 Analysis of the early responders,
2 approximately sixty percent of anticipated, to the
3 first mailing wave of our population-based random
4 survey shows the following interesting but -- I
5 emphasize -- very preliminary illustrative findings.
6 First of all, our target population is
7 highly mobile and actively employed. We have found
8 that these veterans require incentives to participate
9 in surveys and clinical protocols, as well as
10 intensive tracking and follow-up.
11 Secondly, symptom frequencies in these
12 veterans are closely comparable to those reported by
13 the Centers for Disease Control following their
14 analysis of deployed subjects in Pennsylvania and
15 Florida military units.
16 Thirdly, a majority of symptomatic
17 respondents states that they have not entered the VA
18 Gulf Veterans' Registry. A majority of symptomatic
19 respondents.
20 And fourthly, approximately half the
21 respondents replied affirmatively to the question "Do
22 you believe you were exposed to chemical or biological
23 warfare agents at any time while in the Gulf?"
24 The protozoan disorders study is led by
25 Dr. Michael Riscoe of the VA Medical Center. Clinical
218
1 assessment of cases and controls includes the
2 examination, as I mentioned, of serum samples for
3 antibodies to Leishmania tropica, the sand fly-
4 transmitted protozoan parasite responsible for the
5 unexpected illness of "viscerotropic" leishmaniasis.
6 This disease was identified by others in a small
7 number of Persian Gulf War veterans with twelve
8 verified cases and a similar number of suspected
9 cases. The possibility of prolonged latency and
10 apparent clinical dormancy, up to twenty years,
11 underlines the need to include L. tropica, we believe,
12 among the potential risk factors for the unexplained
13 illnesses.
14 Serum analysis for L. tropica is
15 supplemented by original research carried out by Dr.
16 Riscoe focusing on the development of novel
17 chemotherapeutic agents for the treatment of
18 leishmania and other protozoal disorders, for example,
19 malaria, associated with long-term morbidity. Dr.
20 Riscoe's laboratory has developed a mechanism for
21 delivery of chemotherapeutic agents as pro-drugs,
22 which are activated by endogenous oxygen radicals.
23 Based on these findings, Dr. Riscoe's group is working
24 towards the development of a combination
25 chemotherapeutic regimen for leishmaniasis; this
219
1 employs a novel agent of Dr. Riscoe's design together
2 with a standard anti-leishmanial agent. Promising
3 drug efficacy in vitro has been shown for synthetic
4 analogs of a chemical derived from echinoderm. These
5 discoveries have been disclosed to the Department of
6 Veterans Affairs. Future research will focus on both
7 the in vitro and in vivo pharmacological efficacy of
8 the drug against the viseralizing form of L. tropica.
9 Project I. The overall objective of this
10 project is to determine if Persian Gulf War veterans
11 have adverse neurobehavioral or psychological effects
12 result from service in Southwest Asia during the
13 Persian Gulf War. Triggering events, such as
14 environmental exposures, combat stressors and life
15 stressors will be explored in conjunction with the
16 Epidemiology/Medical Core. The project leader is Dr.
17 Kent Anger, and he's working in collaboration with
18 Drs. Binder and Campbell of the VA.
19 Now, veterans in the case-control study
20 serve as the study's subjects for Project I. At the
21 time of clinical examination at the VA, each subject
22 receives a screening assessment with a for-hour
23 battery of psychosocial, neuropsychological and
24 behavioral performance tests. In addition to this
25 screening examination, 25 cases and 25 controls per
220
1 year will be chosen randomly from this group to
2 participate in detailed clinical neuropsychological
3 examinations to characterize the nature of
4 neurobehavioral deficits or disorders in this study
5 population. This examination will include both
6 neuropsychological testing and structured psychiatric
7 interviews. Veterans with post traumatic stress
8 disorder will be invited to come back after two years
9 to assess whether the disorder has progressed.
10 The tests selected for the screening
11 battery required lengthy administration times, offered
12 a bewildering array of administration formats
13 requiring individual explanation and, in some cases,
14 were poorly constructed. We met this challenge, and
15 I believe this has been shared with the subset of this
16 committee by Dr. Anger in former previous weeks --
17 we've met this challenge by developing a user-friendly
18 and consistent computer-administration format that
19 does not require individual explanations for each
20 test. Twelve validated psychosocial tests were
21 selected and developed into this common presentation
22 format to improve acceptability and facilitate
23 administration.
24 The format was programmed on a lap-top
25 computer, and a brief training program developed to
221
1 teach veterans to complete the questionnaires. The
2 newly developed computerized testing format was
3 administered to 20 Persian Gulf War veterans in a
4 pilot evaluation of all 12 psychosocial tests and the
5 prototype training program. Test subjects in the
6 pilot study and in the formal project have been very
7 positive about these test systems.
8 In sum, Project I has developed and
9 implemented a sophisticated battery of tests in a
10 portable package that serves as a screen to assess
11 cognitive function and psychological domains. While
12 the method is playing an important role in the
13 clinical examination of subjects for the case-control
14 study outlined before, it also has the potential
15 utility for the clinical assessment of subjects prior
16 to, during, and following military service in the
17 future. Improved methods for the identification of
18 subjects at risk for psychological illness might
19 reduce the prevalence of future post-war morbidity
20 associated with cognitive dysfunction.
21 Project II addresses clinical and
22 neuroendocrine aspects of fibromyalgia.
23 Fibromyalgia is a diagnosable condition of
24 unknown cause associated with Persian Gulf War
25 unexplained illness-like symptoms, notably
222
1 musculoskeletal pain, and other conditions such as
2 irritable bowel syndrome and restless legs syndrome.
3 Symptoms consistent with fibromyalgia have been
4 reported in veterans returning from previous wars.
5 This clinical research, led by our Chair of Medicine,
6 Robert Bennett, and Andre Barkhuizen and Stephen
7 Campbell of the Portland VA, draws on subjects in the
8 case-control study to determine the relationship
9 between unexplained illness among veterans and
10 fibromyalgia, and the association of this illness with
11 the environmental exposures as defined above.
12 Selected samples of subjects with positive clinical
13 screens for fibromyalgia and depressed serum levels of
14 insulin-like growth factor-1, which is the biological
15 mediator of growth hormone, together with healthy
16 controls, will undergo studies designed to seek the
17 neuroendocrine stress response previously
18 characterized in civilians with fibromyalgia.
19 Neuroendocrine examination will include: growth
20 hormone-stimulation testing with drugs L-DOPA and
21 clonidine, nocturnal secretion of growth hormone, and
22 circadian patterns of cortisol and growth hormone
23 secretion. The results will be examined in concert
24 with the Epidemiology/Medical Core in relationship to
25 deployment period, geographical location, self-
223
1 reported exposures in the theater of war, and
2 psychophysiological factors. And repeat clinical and
3 neuroendocrine testing will be performed on veterans
4 with fibromyalgia and abnormal clinical neuroendocrine
5 findings 24 to 30 months after the initial evaluation
6 to assess the influence of the passage of time
7 following the stress associated with the Persian Gulf
8 War.
9 Preliminary studies have been carried out
10 to determine the frequency of musculoskeletal symptoms
11 in the 388 subjects entered in the Portland component
12 of the VA Gulf War Veterans' Registry. The rate of
13 approximately 30 percent in the Portland sample
14 compares to a 32 percent national rate and a 47
15 percent in the DOD Registry. Our feasibility study of
16 157 shows a comparable, that is, about a 38 percent
17 rate of self-reported musculoskeletal pain in both
18 female and male subjects. Clinical examination of
19 potential cases and controls drawn from our
20 population-based survey has revealed the presence of
21 subjects with clinical criteria consistent with a
22 diagnosis of fibromyalgia, but there are no data, no
23 quantitative data at the present time. The frequency
24 of fibromyalgia in our sample of veterans with
25 musculoskeletal symptoms will be determined as these
224
1 studies progress over the next two years.
2 Identification of veterans with fibromyalgia we
3 believe is an important goal because treatment
4 regimens for this condition are under investigation.
5 Project III looks at the neurotoxic
6 potential of PB and hydrocarbon solvents.
7 The project is directed by Rosemarie
8 Drake-Baumann of the VA and Fredrick Seil, Dr.
9 Fredrick Seil of the VA. This is designed to assess
10 the impact on the nervous system of pyridostigmine
11 bromide and selected aromatic hydrocarbons
12 representative of those found in petroleum-based
13 solvents used for military and civilian purposes.
14 Now, these studies have been performed
15 with structurally and functionally coupled explants of
16 mouse spinal cord, dorsal root ganglia, sensory
17 neurons and striated muscle that together develop in
18 culture in a manner comparable to the development of
19 the neuromuscular system in animals and humans. These
20 combination cultures reproduce normal morphology and
21 physiology. They respond to a wide array of
22 chemicals, including hydrocarbon solvents, in a
23 specific manner that mimics the spatial-temporal
24 pattern of pathophysiology and neuropathology found in
25 animals and humans exposed for similar periods of time
225
1 to the same substances at comparable concentrations.
2 The ability contemporaneously to monitor several parts
3 of the neuromuscular system exposed to known
4 concentrations of the test agents provides a special
5 advantage to the experimentalist focused on toxic
6 mechanisms. Additionally, the same cultures serve as
7 test beds to screen chemicals alone and together for
8 neurotoxic potential.
9 The studies to date have focused on
10 pyridostigmine bromide, which reversibly inhibits the
11 acetyl cholinesterase and thereby helps protect
12 peripheral sites from the effects of nerve gases such
13 as sarin and soman. PB was used, as you know, orally
14 as a nerve-gas-antidote enhancer by an estimated
15 250,000 American service men and women during Desert
16 Storm exclusively. A significant percentage of
17 Persian Gulf War veterans reported symptoms, both
18 expected and unexpected, while on this regimen. Mouse
19 spinal-cord- dorsal-root-ganglia-muscle co-cultures
20 treated with a concentration of pyridostigmine bromide
21 relevant to serum levels likely encountered by Persian
22 Gulf War veterans displayed pathophysiological changes
23 consistent with a site of action at cholinergic
24 synapses. Short-term treatment over minutes has
25 increased spontaneous muscle contractions in a manner
226
1 consistent with the inhibition of acetylcholinesterase
2 and the consequent greater availability of the
3 neurotransmitter acetylcholine at the neuromuscular
4 junction. Prolonged treatment, days to weeks, with a
5 single concentration of PB caused a progressive
6 decrease of muscle contractions and sensitivity to the
7 neurotransmitter in association with pathological
8 changes in the region of the neuromuscular junction.
9 Concentration-effect studies have yet to be conducted.
10 Our preliminary findings appear to be consistent
11 qualitatively with those reported by others in studies
12 of laboratory rodents treated under controlled
13 conditions with large doses of pyridostigmine bromide.
14 While a detailed assessment of the morphological
15 damage induced by PB in organotypic cultures is under
16 way, our studies to date demonstrate a useful model to
17 assess the neurotoxic potential of PB in the presence
18 or absence of other substances.
19 A second area for future study in this
20 project addresses the neurotoxic potential of certain
21 aromatic hydrocarbon solvents. Previous studies with
22 aliphatic hydrocarbon solvents, specifically n-hexane
23 and its metabolites, demonstrated that these cultures
24 reproduce the specific type and spatial-temporal
25 evolution of nerve fiber damage seen in humans and
227
1 animals exposed to n-hexane in uncontrolled and
2 controlled conditions, respectively. Mouse neural
3 cultures will be used to assess in vitro the
4 neurotoxicity of diethyl benzene isomers. These
5 chemicals are representative of a group of aromatic
6 hydrocarbons which, upon systemic exposure, induce a
7 remark blue discoloration of animal tissues and human
8 urine. Previous studies suggest a direct relationship
9 between the chromogenic and neurotoxic properties of
10 these substances which, in laboratory rodents, is
11 initially expressed in the form of hyperirritability.
12 Comparable behavioral effects in humans would be of
13 significance, we propose, both in military and
14 civilian life.
15 Project IV addresses DNA damage from
16 chemical agents and its repair. This project, we
17 believe, is pertinent to both the long-term health of
18 Persian Gulf War veterans and the ability biologically
19 to monitor exposure to chemical agents long after
20 exposure has ceased. Led by Dr. Glen Kisby, Project
21 IV employs the nitrogen mustard drug mechlorethamine,
22 a surrogate for sulfur mustard or mustard gas, to
23 determine the type and quantity of DNA adducts in skin
24 and brain, and the cellular capacity to repair these
25 adducts. While there is no evidence that mustard gas
228
1 was used offensively in the Persian Gulf War, it was
2 stored by Iraq, apparently presently in the theater of
3 operations, and reportedly caused injury to at least
4 one American serviceman. the February 15, 1996,
5 Interim Report of this Committee states that mustard
6 gas was undetectable by the primary U. S. system, the
7 M8A1, "designed to provide early warning of chemical
8 attack during the Gulf War." Regrettably, mustards
9 and other chemical-warfare agents are likely to be a
10 threat in future conflicts.
11 The goals of this study are threefold:
12 Firstly, to determine the type and quantity of
13 specific DNA adducts and the capacity to repair these
14 adducts in control and mustard-treated genomic DNA
15 isolated from normal human skin. Secondly, to assess
16 the relationship between DNA damage, DNA repair and
17 cell degeneration in mouse cerebral cortical cultures
18 treated with nitrogen mustard; and thirdly, to compare
19 and contrast DNA damage, DNA repair and cytotoxicity
20 in primary nerve cell and glial cell cultures, and
21 human neuroblastoma cultures treated with this agent.
22 In vitro cytotoxicity studies have demonstrated that
23 rodent nerve cells and human neuroblastoma cell lines
24 are more vulnerable than rodent astrocytes to low
25 concentrations of the drug. Similarly, the
229
1 restoration of mustard-induced DNA damage by a key
2 DNA-repair protein appears to be more efficient in
3 glial than in nerve cells. The accumulation of DNA
4 damage in nerve cells has unknown consequences in the
5 long term; in other tissues, it has been linked to
6 aging and cancer. Preliminary studies using a tissue-
7 culture model of human skin treated in vitro for days
8 with high concentrations of nitrogen mustard
9 demonstrated reduced immunostaining for the DNA-repair
10 protein in the epidermal cell layer.
11 And the development of a biological marker
12 for mustard exposure would be a useful tool, we
13 believe, in seeking studies to link health effects
14 with chemical exposures. A future goal is to
15 determine whether DNA damage attributable to mustards
16 can be detected differentially in skin biopsies of
17 cases and controls drawn from our epidemiological
18 study of Persian Gulf War veterans.
19 I'd like to conclude the testimony by
20 stating the potential benefits for veterans' health of
21 our research program.
22 First of all, protozoal disorders: The
23 prospect of new drugs to treat protozoan disorders
24 both of tropical and temperate climes, including
25 respectively, malaria, leishmaniasis and giardiasis,
230
1 in terms of temperate-related protozoan disorder.
2 Secondly, fibromyalgia: The prospect of
3 diagnosing and treating veterans with fibromyalgia.
4 Thirdly, with regard to unexplained
5 illness: the determination of the role of exogenous
6 and endogenous factors in the generation of illnesses
7 as a foundation for appropriate treatment and
8 prevention.
9 Fourthly, health screening: The provision
10 of a new, user-friendly computerized tool to screen
11 subjects for psychological health prior to, during,
12 and following military service.
13 Fifth, as a long-term health marker: The
14 prospect of new biological indicators of prior mustard
15 exposure.
16 And sixth, with regard to nerve gas-
17 antidote safety: Clarification of the health hazards
18 associated with the prophylactic use of pyridostigmine
19 bromide as a nerve-gas-antidote enhancer.
20 So, in conclusion, the Portland
21 Environmental Hazards Research Center, directed by Dr.
22 Dennis Bourdette, who unfortunately cannot be here, as
23 I mentioned, has a broad program of fundamental and
24 clinical research pertinent to the future demands of
25 military service, as well as the immediate health
231
1 concerns of Persian Gulf War veterans. We seek to
2 identify risk factors for unexplained illnesses among
3 veterans and the best approaches to treatment and
4 prevention. We also wish to elucidate mechanisms
5 underlying health hazards associated with selected
6 chemicals encountered in warfare and thereby help
7 promote the future well being and safety of our
8 service men and women. These goals, we believe, are
9 consistent with those laid out by the Persian Gulf
10 Veterans' Coordinating Board in their August, 1995,
11 "Working Plan for Research on Persian Gulf Veterans'
12 Illnesses."
13 Thank you very much for letting me present
14 this program.
15 CHAIRWOMAN LASHOF: Thank you very much,
16 Dr. Spencer. We appreciate this.
17 Let me open it now for questions from our
18 panel or staff. Do the Committee members have any
19 questions?
20 DR. TAYLOR: I just have one.
21 CHAIRWOMAN LASHOF: Yes. Go ahead.
22 DR. TAYLOR: Dr. Spencer, I wanted to ask
23 you a little bit about some of the exposures related
24 to -- we've heard earlier with depleted uranium and
25 some of the oil fires. Are you looking at any
232
1 environmental exposures related to those kinds of
2 exposures?
3 DR. SPENCER: Thank you for the question.
4 The slides are still on. This question of
5 environmental exposure assessment is obviously one of
6 the most thorny questions that we have to face.
7 Ideally we would like to be there doing real time
8 measures. If the toxicologist doesn't have that
9 available to him or her, then measuring residual
10 chemicals in the body would be the appropriate way.
11 We know of no residual chemicals that we should
12 measure.
13 Failing that, we would turn to biological
14 markers of exposure. Unfortunately, we don't have any
15 biological markers of exposure, although we, of
16 course, are working on one.
17 So, what could we do, we asked ourselves,
18 in order to try to get some hard data on exposures?
19 And we felt that the best way we could come up with
20 this would be to stratify in time the different
21 experiences of subjects who went to the Gulf, namely
22 by taking individuals who deployed exclusively for
23 Desert Storm, exclusively for Desert Shield,
24 exclusively for the clean-up period, as well as
25 combinations of those, because in this way we will at
233
1 least be able to be firm about different groups'
2 subsets of exposures. We know when people arrived in
3 the Gulf, we know when they left.
4 When we then combine that with their
5 geographical location, and we unfortunately have yet
6 to receive the DOD database but we're looking forward
7 to receiving it any day, we believe that we will then
8 be able to narrow down, spatially and temporally,
9 their experiences, which will then relate to more
10 specific environmental exposures.
11 And as my colleagues in Boston and New
12 Jersey have commented previously, we also place a high
13 degree of importance on self-reported exposures of the
14 veterans, and we will be able to fit those experiences
15 within this particular model.
16 Frankly, we do not expect to come up with
17 a single causal risk factor. We do expect to come up
18 with a hierarchical risk profile for unexplained
19 illness which will be a construct both of exposures
20 and of endogenous factors and the interactions between
21 the two.
22 DR. TAYLOR: I guess the second question
23 is the follow-up to that. What's your time line for
24 the study?
25 DR. SPENCER: The research planning period
234
1 for the epidemiology study was conducted over the
2 first year; the feasibility and pilot studies over the
3 first half of the second year; and the formal survey
4 had to await OMB approval. This finally went ahead
5 with the formal survey in December 1995 and the cases
6 and controls are now coming in.
7 We anticipate that this study will spread
8 over a three-year period. We hope to pick the brains
9 of our survey statisticians and biostatisticians with
10 regard to when we will be statistically justified to
11 analyze our preliminary data so that we can make some
12 preliminary statements on the basis of our formal
13 population-based survey.
14 I am personally impressed with how news
15 broadcasts can make very accurate predictions about
16 the outcomes of elections on the basis of a few
17 percent of sampled. I don't wish to do that, but I do
18 wish to ask my statisticians and survey consultants
19 when we will be justified in breaking open the data
20 and looking at preliminary findings.
21 CHAIRWOMAN LASHOF: Don?
22 DR. CUSTIS: You've stratified the
23 veterans' study group into three cohorts ending with
24 the cleanup phase. There are still American troops in
25 Kuwait and Saudi Arabia. Does that constitute a
235
1 cohort that's worthy of any study at all?
2 DR. SPENCER: I would say that there are
3 many cohorts which are worthy of study, and that would
4 certainly be one, perhaps with different subsets of
5 exposure. It might be of interest, for example, to
6 look at the experiences of these American service men
7 and women with respect to time during the year. We
8 don't have a very firm handle on the differential --
9 on the temporal distribution, differential temporal
10 distribution of sand flies, for example, within the
11 Gulf region as a function of climate, and that would
12 be important feed -- important information in
13 relationship to the opportunity for infestation with
14 a protozoan parasite.
15 There are additional questions that could
16 be asked of that group and of other groups,
17 individuals who were deployed only to Germany.
18 Individuals who thought that they were going to go to
19 Germany and then on to the Gulf but who never left the
20 continent of the United States.
21 Unfortunately, we do not have the funding
22 to address all of those groups, and we've narrowed our
23 efforts to those subjects who were deployed in the
24 Gulf. We did seek additional funding but were
25 unsuccessful for a comparison study between U. S. and
236
1 U. K. veterans because we believe that that's an
2 important additional cohort that we could gain
3 information from, because they had somewhat different
4 experiences in the Gulf. They -- the U. K. group
5 representing a second -- the second largest, a group
6 of subjects from the -- within the Coalition force.
7 CHAIRWOMAN LASHOF: Mark?
8 MR. BROWN: Thank you. I have two
9 questions, if you don't mind, Peter.
10 First of all, both the other environmental
11 hazard centers that we heard from made a very obvious
12 emphasis on chronic fatigue syndrome and multiple
13 chemical sensitivity, I guess because of the obvious
14 overlap between the types of symptoms that some
15 veterans are showing and those diseases. And I'm
16 wondering in your definition of case, you have some of
17 those issues, too, you have cognitive changes,
18 unexplained fatigue and some others, and I'm wondering
19 if you're -- I didn't hear you mention it, and I'm
20 wondering first of all if you're -- if you have any
21 thoughts or if you're specifically looking at chronic
22 fatigue syndrome and multiple chemical sensitivity
23 issues. That's my first question.
24 And then my second question is just
25 briefly, did I understand you to say that you have in
237
1 this assay with a mouse motor, nerve/motor/muscle
2 junction system, an in vitro system, that you can show
3 effects at the neuromuscular junction with
4 pyridostigmine bromide that shows some type of damage
5 at physiological relevant concentrations? That
6 strikes me as a fairly remarkable finding, and I'm
7 wondering, is that going to be published, I guess, is
8 my ---
9 DR. SPENCER: No, these are just
10 preliminary findings. In regard to your second, there
11 have been a number of studies conducted previously in
12 animals, looking at both single exposures to sarin and
13 soman and repeated exposures to pyridostigmine
14 bromide. These were reported over ten years ago.
15 These studies were primarily ultra-
16 structural studies I think carried out in the
17 laboratory of Dr. Edson Albuquerque in Baltimore.
18 What I said was that our findings in the
19 tissue culture system are consistent broadly with the
20 findings of both are expected with this drug and our
21 reported.
22 We have yet to do the electromicroscopy,
23 so we cannot specifically state that the ultra-
24 structural findings in these cultures are identical,
25 but we do find evidence of the spreading of
238
1 localization of the neuromuscular junction which would
2 be consistent with early denervation, but I can't tell
3 you that we have concrete proof of denervation at this
4 point. The electrophysiological changes would be
5 consistent with this, but I would say that we do not
6 view these findings as great surprise since they're
7 sitting in the literature for some time.
8 With regard to your point about multiple
9 chemical sensitivity and chronic fatigue syndrome,
10 yes, indeed, we're following this very carefully. We
11 will be looking at subjects, a subset of subjects that
12 fulfill the criteria of chronic fatigue syndrome.
13 With regard to multiple chemical
14 sensitivity, this Committee may not be aware that a
15 few weeks ago in Berlin the WHO brought together a
16 group of European and other experts to address the
17 issue of multiple chemical sensitivity. The
18 recommendations -- I'm not sure whether they're
19 recommendations -- a summary was published, and I
20 believe it may be widely available at this time.
21 The multiple chemical sensitivity syndrome
22 that was addressed there considered not only
23 sensitivity to chemicals but also to other factors
24 that people complain of, particularly in Europe; for
25 example, proximity to radiation sources, and, for
239
1 example, electromagnetic radiation, and other
2 environmental factors which greatly concern them and
3 impact their health.
4 This particular group felt that the
5 evidence that there was some chemically-triggered
6 sensitivity has yet to be collected, as outlined by my
7 colleague in the VA research team, and specifically
8 the studies that were recommended by WHO will be
9 carried out by Dr. Watermiler and his colleagues.
10 The provisional name of idiopathic
11 environmental intolerance was substituted for multiple
12 chemical sensitivity at this particular meeting.
13 Idiopathic environmental intolerance was used as a
14 descripter, not as a diagnosis, and this particular
15 international group felt that idiopathic environmental
16 intolerance could then be added to it, intolerance to
17 chemicals, intolerance to other environmental factors.
18 This descripter was used in order to set
19 up an opportunity for research, to ask as you've heard
20 before about whether psychological factors or
21 toxicological factors or both drive this particular
22 phenomenon, and the specific recommendation was to
23 carry out a double-blind crossover placebo controlled
24 study to address this question, and from that it was
25 assumed that the data would indicate whether or not
240
1 there was concrete evidence of sensitivity to
2 chemicals, justifying the term multiple chemical
3 sensitivity, and from that appropriate toxicological
4 studies could be launched and the appropriate
5 treatment could be launched.
6 If, on the other hand, psychological
7 factors were dominant, that would lead to another
8 method for diagnosis and for treatment.
9 I might underline that every member of
10 this WHO working group recognized that this was a
11 significant health problem that needed to be addressed
12 promptly.
13 CHAIRWOMAN LASHOF: Yes, Dr. Brix.
14 DR. BRIX: Dr. Enger came and gave us a
15 demonstration about two months ago. He said that at
16 about that same time in late January was the time of
17 bringing people in for the -- the first people for
18 project one and project two. And I would just like to
19 have an update from you as to approximately how many
20 people you brought in for those and what is your
21 overall goal over the next three-and-a-half years,
22 please.
23 DR. SPENCER: Well, the overall goal is to
24 draw 250 cases and 250 controls for the clinical case
25 control study, and these will be taken from the random
241
1 population-based survey of some 3,000 Northwest
2 veterans. And our goal is to examine about 20
3 subjects per month, and I do not have a precise number
4 to give you at the present time. It is measured in
5 the tens. I'd be certainly pleased to get that study
6 -- that number for you immediately after the end of
7 the meeting.
8 CHAIRWOMAN LASHOF: I have a couple of
9 questions about the pyridostigmine bromide and the
10 changes in them. There's a footnote in here about
11 bromism. Are these changes seen and would bromism
12 continue after therapy had been stopped, or is it only
13 while they are on the pyridostigmine bromide that you
14 would see this?
15 DR. SPENCER: Dr. Lashof, this is a
16 theoretical construct. It's based on the
17 consideration that pyridostigmine bromide has two
18 potential neurotoxic moieties, the pyridostigmine on
19 the one hand and the bromide ion on the other hand.
20 The bromide ion, as you know, is of interest because
21 it can cross the blood/brain barrier. It has been the
22 cause of a considerable amount of illness in prior
23 decades when bromides were very widely used.
24 Of particular interest here, we believe,
25 is that because bromide substitutes for the chloride
242
1 ion in intracellular and extracellular fluids, in
2 situations when subjects are dehydrated, and because,
3 for example, subjects in Desert Shield spent many
4 months in the desert and were at risk for dehydration,
5 we're uncertain whether they had salt tablets with
6 them to replace their chloride.
7 But theoretically, in a situation of
8 depletion of chloride, the subsequent presentation of
9 bromide from pyridostigmine bromide would
10 theoretically lead to a greatly enhanced half life for
11 the bromide ion. And this is being shown
12 experimentally in early dog studies, in fact, in the
13 early 1930s, where the half life of the bromide ion
14 changed from days, the normal half life, to months.
15 That's the half life, not the full life.
16 CHAIRWOMAN LASHOF: Right.
17 DR. SPENCER: And so, there is the
18 potential for effects to be seen both in the short
19 term and in the long term if one has subjects who are
20 chloride depleted.
21 We have particular interest in this regard
22 because the American population has switched in recent
23 years to a relatively low salt diet, and we were keen
24 to compare this group with U. K. citizens which still
25 maintain a rather high salt diet; in fact, estimates
243
1 of -- estimates have been given as to the differential
2 salt exposure. And thus we were curious about the
3 prospect that military subjects went into the Gulf
4 with potentially different salt loads and were
5 subjected to heat stress, had enormous amounts of
6 sweat within the Gulf, within the desert, perhaps were
7 not replaced with -- perhaps the chloride was not
8 replaced with salt tablets. And then on top of that
9 they were exposed to PB such that there was the
10 environment, the internal milieu upon which the
11 bromide ion could exert its toxicity.
12 I emphasize this is a theoretical
13 construct, but I would also say that if one was
14 designing an agent for a nerve gas antidote enhancer,
15 one wouldn't think of bromide as the anion that one
16 would attach to pyridostigmine from the point of view
17 of toxicological considerations. One might want to
18 choose another anion like chloride.
19 Having said that, there may be some other
20 important consideration to which I am not privy as to
21 why the bromide was chosen.
22 CHAIRWOMAN LASHOF: Thank you very much.
23 It's an interesting suggestion, hypothesis or what
24 have you. Certainly deserves further work, and I'm
25 glad you're doing that.
244
1 DR. SPENCER: Excuse me. Unfortunately we
2 are only doing this in a very limited degree. We were
3 unsuccessful in our application to conduct a formal
4 study on this question. But we do believe it is an
5 important question to be addressed, and we would
6 certainly like that opportunity in the future.
7 CHAIRWOMAN LASHOF: I'm sure you'll
8 reapply.
9 It strikes me that I think you're the only
10 group who is taking as your control people who were
11 deployed to the Gulf but at different times and
12 different exposure report. Practically all the other
13 epidemiologic studies that I think -- and staff can
14 correct me if I'm wrong -- that have been presented to
15 us have used deployed and non-deployed. And I was
16 struck that I think this is a very useful approach to
17 this difficult problem we have of trying to figure out
18 who was exposed to what, and using your case control
19 to be both drawn from those who were over there but
20 with different exposure.
21 DR. SPENCER: Thank you, Dr. Lashof. We
22 felt that this was where the veterans' interest was
23 perhaps paramount as to the question as to whether
24 there was something in the Gulf which was associated
25 between illness and health, and that's why we decided,
245
1 upon the advice of our consultants, in addition, to
2 place our activities, focus our activities.
3 CHAIRWOMAN LASHOF: Any other questions?
4 If not, we'll take a break at this point
5 and resume at 3:45 promptly. Just a ten-minute break
6 please.
7 (Whereupon, a recess was taken.)
8 CHAIRWOMAN LASHOF: I think we're going to
9 resume now. I'll ask if Nancy Hunter-Young will come
10 forward and give us a briefing at this point on
11 outreach activities at the Department of Veterans
12 Affairs. Nancy Hunter-Young from the VA National
13 Customer Feedback Center, Roxbury, Massachusetts.
14 Tell us about the feedback center.
15 MS. HUNTER-YOUNG: Well, thank you, Dr.
16 Lashof and Committee members for inviting me to come
17 and tell you about the center. My background is -- I
18 am currently the Acting Director of the center. I
19 have a background in critical care nursing and health
20 care business management and health services research
21 and development.
22 Our center is located on the campus of the
23 Brockton/West Roxbury VA Medical Center in West
24 Roxbury. Organizationally, we are a newly-created
25 decentralized program within the VHA Office of Quality
246
1 Management, and that is headed by our former Director,
2 Dr. Nancy Wilson.
3 Our center was officially funded in 1994
4 and our staff includes myself, our chief survey
5 methodologist, a research assistant, a program
6 assistant and a program specialist.
7 We receive biostatistical staff support
8 through the Office of Quality Management in
9 Washington.
10 And we provide the following services:
11 National standardized surveys of recently discharged
12 ambulatory care and long term care veteran patients.
13 We provide private sector comparison data in working
14 with a Boston-based group, the Picker Institutes. We
15 provided customized analyses of our survey data
16 nationally from requests from VA Medical Center
17 directors, network directors and special programs.
18 And we provide consultative support for VA Medical
19 Center level and network level initiatives, including
20 advice on survey content, sampling, data collection
21 and data analysis.
22 What I'd like to do this afternoon in
23 terms of telling you about the Feedback Center is
24 cover some background in terms of how the patient
25 feedback service originated, primarily the concerns
247
1 with the former satisfaction system that VA had in
2 place, go over the original pilot study that we
3 conducted, and then tell you about our current methods
4 for survey services.
5 I'd also like to talk about the
6 relationship of the customer service to the VA's
7 customer service standards and show you some brief
8 data from the 1994 national survey of recently
9 discharged veterans.
10 I've already gone over what our basic
11 services are, and then I'd like to talk a little bit
12 about my discussions with Dr. Fran Murphy, the
13 Director of the Persian Gulf program, and a plan for
14 evaluating Gulf War veterans' survey responses in our
15 in-patient and out-patient samples.
16 VA started serving veterans in 1974 with
17 a traditional hospitality satisfaction survey,
18 basically asked questions like was the staff
19 courteous, yes/no; was the room clean. Similar to
20 what you would find in a hospitality survey.
21 The Office of Quality Management took over
22 the system in 1991 and early in 1992 Dr. Nancy Wilson
23 began a fellowship at the Brockton/West Roxbury VA
24 Medical Center in health services research and
25 development and primary care. She was an internist
248
1 who had an interest in patient satisfaction and had
2 done some research in that in the private sector, and
3 she worked with Dr. Jennifer Daley who's now the
4 Director of Health Services Research and Development
5 at the West Roxbury VA to design a pilot study that
6 would measure veteran patients' reports of
7 satisfaction with their health care in the VA.
8 And ultimately the plan was that if this
9 study was successful and feasible, it would replace
10 the old patient satisfaction system.
11 The main problems with the former VA
12 patient satisfaction surveys were that the quality of
13 the methodology varied by hospital. It was conducted
14 primarily by patient representatives. There was no
15 uniform random sample of patients to survey. It was
16 a hand out survey, hand back in survey.
17 There was a common belief that the
18 questions were not true measures of quality, and the
19 results showed no variability over time.
20 The original pilot study purpose was to
21 explore the relationship between patient reports and
22 their overall ratings of the quality of their health
23 care, and the design involved, first of all, focus
24 groups of veterans and their families to ascertain
25 what veterans would report as a high quality health
249
1 care experience. And the reason why that was done, we
2 were working collaboratively with the Picker Institute
3 who conducts private-sector surveys of both medical
4 and surgical in-patients and ambulatory care patients.
5 They were using a survey instrument that
6 had been well field tested, and we wanted to use a
7 similar model. One concern, though, from our advisory
8 panel for the original pilot was that we wanted to
9 make sure that veterans had similar priorities if we
10 were going to use a private sector survey and then use
11 that as bench mark comparison data later on.
12 So, we began conducting focus groups
13 nationwide of veterans and their families to ask them
14 what they thought would exemplify a high quality
15 health care experience in the VA.
16 The random sample was 12,000 veterans for
17 the pilot discharged between May 1st and July 31st,
18 1993, from twenty VA medical centers nationally. The
19 survey instrument, as I said, was modeled after the
20 one developed and in use by the Picker Commonwealth
21 Program for patient centered care. This program was
22 established in 1987 in Boston's Beth Israel Hospital
23 and Harvard Medical School to promote an approach to
24 hospital and health services focusing on the patient's
25 needs and concerns as the patient defines them, and to
250
1 explore models of care that make the experience of
2 illness and hospitalization more humane.
3 Our center continues to work
4 collaboratively with the Picker Institute in both
5 survey design and comparative data analysis.
6 Once the focus groups were completed a
7 descriptive cross-sectional mail survey was designed
8 and implemented. When the responses were received
9 they were then merged with the VA's patient treatment
10 file which is the discharge to abstract database for
11 both in-patient and out-patient care.
12 The key results that we found from the
13 thematic analysis of the pilot were that patient mail
14 surveys are feasible in VHA. We had a seventy-percent
15 overall response rate in the pilot. Over half the
16 variation in the patients' overall satisfaction
17 ratings with the quality of their health care could be
18 explained by their reports about the priorities that
19 we were measuring in the survey, and these priorities
20 were specifically taken from the analysis of the focus
21 group with veterans and their families.
22 The third was that patients can and do
23 distinguish between priorities of quality health care,
24 and that controlling for age, health status, hospital
25 service and teaching status, there was marked
251
1 variability across -- existing between VA hospitals on
2 scores that measured their performance on the veteran-
3 defined indicators of quality health care.
4 In terms of the nationwide focus groups of
5 patients and their families that we conducted, the
6 primary purpose of this was to elicit patient
7 priorities for quality health care and then to elicit
8 patient descriptions of specific behaviors that
9 characterize each of these priorities. And those
10 behaviors were categorized, then, into ten main
11 constructs, that in the area of emotional support,
12 coordination of care, respect for patient preferences,
13 physical comfort issues, provider continuity, staff
14 courtesy, timeliness of access to care, information
15 and education, family participation and involvement in
16 their care, and transitions from in-patient to the
17 out-patient setting.
18 We then collaborated with the Picker
19 Institute researchers and a questionnaire was written
20 to measure the current performance on each priority.
21 The questions asked patients to report the frequency
22 of behaviors that characterized each priority, and
23 they asked patients to evaluate the adequacy of those
24 behaviors. There are also questions in the survey
25 that ask for overall impressions of the quality of the
252
1 care.
2 This is an example of the survey
3 questionnaire that we used for the 1994 in-patient
4 survey. It's an optically scannable format, and I have
5 a couple of questions since it's not so easy to see
6 that I've highlighted on the next slide.
7 This is an example of the wording of the
8 questions. For example, "Were you told what danger
9 signals about your illness or operation to watch out
10 for after you got home?" "Did you know who to ask
11 when you had questions about your health care?" "Did
12 someone explain the purpose of your medicines in a way
13 you could understand?"
14 The current status of our surveys
15 conducted at the National Customer Feedback Center.
16 Our first national survey after the pilot of recently
17 discharged in-patients was conducted in February of
18 1994. We mailed to 69,500 veterans nationwide. We
19 had an overall response rate of 68 percent.
20 The second national survey was just
21 completed in terms of data collection in September of
22 '95, and we have a raw response rate of 63 percent,
23 and that was mailed out to a sample of 68,000
24 veterans.
25 Ambulatory care, we did a nationwide pilot
253
1 for that survey in January to 7,400 patients
2 nationwide, and the first national survey was
3 conducted in August to 41,000 ambulatory care patients
4 at 157 VA medical centers representing 276 ambulatory
5 clinics. We had a very good response rate of 76
6 percent.
7 And long term care, we're now designing
8 the survey. We've just begun that design. The plan
9 time line is for a pilot in the third quarter of this
10 fiscal year, and then the national roll-out in the
11 fourth quarter.
12 In terms of our methods and data
13 collection, we mail the questionnaires from the
14 National Customer Feedback Center and they're sent
15 back directly to us. We use a modification of the
16 total design method which was developed by Don Dilman
17 at the U. S. Census Bureau in terms of receiving high
18 response rates.
19 A pre-notification letter telling the
20 patient that they've been randomly sampled is sent
21 out. Seven days later they receive the first mailing
22 which includes a cover letter explaining the purpose
23 of the survey and the questionnaire. A week later
24 they receive a reminder/thank you/follow-up postcard
25 which is sent to everyone in the sample, and then two
254
1 weeks later we send a second mailing to the non-
2 responders.
3 The questionnaires when received at the
4 center are optically scanned into a data set. The
5 responses are then merged with the patient treatment
6 file for both responders and non-responders. We use
7 that to obtain additional demographic data.
8 This gives you an idea in this table of
9 the overall response rates for patients in the 1994
10 survey of recently discharged in-patients, that should
11 say on the slide. As you can see, we experienced very
12 good overall response rates from veterans, 68 percent
13 overall, and a range of 48 percent in psychiatry. The
14 unit of analysis in the in-patient survey is at the
15 department level, in-patient department level. 48
16 percent at a low in psychiatry to 78 percent for
17 surgical patients.
18 When we report the results, the content of
19 the reports are the specific veteran-defined indicator
20 and how the hospital performs, and that's emphasized
21 in the report. The relative importance of those
22 indicators to the overall quality of care rating is
23 given and we provide benchmark comparisons using risk-
24 adjusted performance.
25 The recipients of the report in central
255
1 office are the Undersecretary of Health for the
2 Department of Veteran Affairs, Dr. Kizer, and the
3 Office of Quality Management. We provide reports to
4 the 22 VA network directors, the VA medical center
5 directors and service chiefs, and then they distribute
6 the reports to quality management coordinators,
7 patient representatives and the TQI councils at the
8 hospitals.
9 In response to the Presidential executive
10 order on September 9th, 1994, VA was directed to
11 develop and implement a customer service plan, and the
12 specific areas of the order stated that VA should
13 identify their customers, survey their customers to
14 determine the kind and quality of services they want
15 and their level of satisfaction with existing
16 services, post those service standards and measure
17 results against them. Benchmark performance should be
18 provided against the best in business.
19 They should provide their customers with
20 choices in both the sources of service and the means
21 of delivery, make the information services and
22 complaint systems easily accessible, and then provide
23 means to address customer complaints.
24 The process of establishing those customer
25 service standards involved a multi-disciplinary field
256
1 and central office work group in which we at the
2 center were integrally involved. VHA central office
3 policy boards and various senior officials in central
4 office as well as personnel from the National
5 Performance Review met. It was decided during those
6 meetings that the ten indicators which veterans had
7 defined as a priority in determining a high quality
8 health care experience would be operationalized into
9 the customer service standards for VHA.
10 And these are the same standards that I --
11 indicators that I showed you earlier. They've become
12 the operationalized standards.
13 Here's an example of one of the standards,
14 emotional support, and it's the way that it's actually
15 stated when it's written as the standard. "We will
16 provide support to meet your emotional needs." The
17 questions that are underneath it are the in-patient
18 component questions that load into that particular
19 standard for scoring the customer service standard,
20 and there are four of them in the in-patient survey.
21 In terms of how scores are reported, this
22 table shows you how we calculate the problem scores.
23 A problem score was computed for each VA medical
24 center's customer service standard, and it was done by
25 first assigning a score of zero to each question that
257
1 was answered in a favorable manner and a score of one
2 to each question that was answered in an unfavorable
3 direction.
4 After coding all the questions in that
5 fashion, the questions related to each customer
6 service standard were averaged together to obtain a
7 problem score for each patient for that service
8 standard.
9 You can see on the table that the
10 computation of the problem scores for hypothetical
11 three patients in a sample. Patient 001 answered only
12 one question out of four in a manner indicating a
13 problem experienced resulting in a problem score of
14 .25. Subject three earned a problem score of .75 for
15 this customer service standard because his responses
16 indicated negative experiences on three out of four of
17 the component questions. And as you can see, the
18 trend is that the higher problem scores indicate less
19 favorable patient perceptions.
20 The problem score then for each VA medical
21 center on any given customer service standard was
22 simply the average of the problem scores for the
23 individual patients discharged from that hospital.
24 For example, if the three patients listed in the table
25 were the entire sample for a particular VA medical
258
1 center, the problem score for that VA on the patient
2 education customer service standard would be .25 plus
3 .75 plus .10 -- I'm sorry -- plus one, divided by
4 three, so the problem score on education would be .67.
5 This just shows you an example of all the
6 customer service standards for the in-patient 1994
7 survey data for medicine patients adjusted for age and
8 health status among four different VA medical centers,
9 A, B, C and D.
10 Earlier I had mentioned that one of the
11 problems with the old patient satisfaction system in
12 VA was the lack of variability of results, both within
13 VA medical centers and across VA's nationwide. This
14 slide illustrates customer service standard scores for
15 emotional support for medicine patients in the 1994
16 study across the VA medical centers. And as you can
17 see, there is almost a three-fold difference between -
18 - in problem scores in the area of emotional support
19 between the lowest and the highest scores at VA
20 medical centers, so we were able to demonstrate
21 considerable variability across VA medical centers.
22 Variability among scores on the customer
23 service centers within a VA medical center are also
24 seen. This bar graph shows for the seven customer
25 service standards in the 1994 survey for medicine
259
1 patients the ranked order of scores. Remember, lower
2 scores mean that you have fewer problems.
3 We routinely provide comparative data when
4 reporting results. Comparisons are provided to the VA
5 national average and to the non-VA Picker private-
6 sector data. This is taken directly from a report.
7 It's a little bit hard to see. But it's a benchmark
8 chart for medicine patients in the 1994 survey, and
9 the customer service standards are across the bottom
10 and the problem score is on the Y axis. And it shows
11 confidence intervals for this VA hospital's medicine
12 patients in terms of their score, 95 percent
13 confidence interval, and then it shows the Picker data
14 and the national average for medicine patients so that
15 they can look to see how they compare to those
16 populations.
17 Several months ago I was contacted by Dr.
18 Fran Murphy, the Director of the Persian Gulf Program
19 in Central Office, and she was interested in finding
20 out if we had a variable in our data set that showed
21 period of service for the respondents and non-
22 respondents to the survey. We do collect period of
23 service from the patient treatment file when we do the
24 merger, and we were able to identify Gulf War-era
25 veterans in our sample.
260
1 We then talked about how we could go about
2 looking to see whether those veterans had been
3 deployed or not. We are in the process right now --
4 we have identified the Gulf War veterans in our 1995
5 databases, both in-patient and ambulatory care. We
6 are working with a biostatistician from Dr. Murphy's
7 program to match our sampling frame against the
8 Austin, Texas, Gulf War veteran roster of those
9 veterans who were deployed between 8/90 and 6/91, and
10 we were able to match those yesterday, so we're able
11 to find out at this point who was deployed.
12 The standard analysis then, the plan is
13 that the standard analysis will be run for those
14 veterans, that subset of veterans, to determine the
15 customer service standard scores, percentages of
16 problems that were reported, and the overall quality
17 ratings that those veterans report for both
18 respondents and non-respondents.
19 The report results then will be to Dr.
20 Murphy in the Persian Gulf program.
21 We were able to find for our 1995 recently
22 discharged in-patients we were able to match 702
23 deployed veterans in the sample against the Austin
24 database, and for the out-patient database we were
25 able to match 713 deployed veterans who were matched
261
1 in the sample.
2 In terms of other variables in that data
3 set, we need to have further discussion with Dr.
4 Murphy about the variables that exist in the roster
5 data set in terms of whether they would be of interest
6 in an analysis of that group.
7 That's it.
8 CHAIRWOMAN LASHOF: Thank you very much.
9 MS. HUNTER-YOUNG: You're welcome.
10 CHAIRWOMAN LASHOF: I think that's very
11 helpful.
12 Are there questions that the panel has?
13 DR. TAYLOR: All of this was from in-
14 patient surveys.
15 MS. HUNTER-YOUNG: What I showed you was
16 from
17 in-patient.
18 DR. TAYLOR: Just beginning with looking
19 at those who were deployed and who received ambulatory
20 care; is that correct?
21 MS. HUNTER-YOUNG: We're going to match it
22 against both the data sets, both ambulatory care and
23 in-patient care.
24 DR. TAYLOR: So, we don't have any scores
25 yet.
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1 MS. HUNTER-YOUNG: No. No. We just
2 started. We just got the matches yesterday, so the
3 next step would be -- it will be fairly easy to
4 determine the scores because the analysis is fairly --
5 is complete for in-patient and out-patient.
6 MAJOR KNOX: Sounds like you have a pretty
7 sound survey. What's the plan for the interventions
8 based on the surveys? Have you thought that far?
9 MS. HUNTER-YOUNG: Well, the hospitals,
10 once they receive the reports, there's a lot of
11 activity going on right now in terms of initiatives.
12 We get called in for a consultation in strategic
13 planning as to what to do with the data now, or data
14 interpretation. Some of the hospitals are focusing on
15 -- have sent people in quality management or the TQI
16 council for focus group training, and they are
17 conducting their own small focus groups with veterans
18 at their facility to work on a customer standard --
19 service standard that they did particularly poor in,
20 as a way of including the veterans' opinions in what
21 would be a good initiative to develop to improve in
22 this particular area.
23 CHAIRWOMAN LASHOF: Any other questions?
24 MS. NISHIMI: When do you anticipate the
25 entire package to be complete and then also the
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1 subset?
2 MS. HUNTER-YOUNG: For which population?
3 In-patient?
4 MS. NISHIMI: Both.
5 MS. HUNTER-YOUNG: Okay. Well, we have
6 the out-patient data. That's already been distributed
7 to the field. And last year's in-patient report.
8 We're doing the analysis for this year's in-patient
9 report currently, and that should be out at the end of
10 May, distributed to the field. So, I'm hoping that we
11 can work on the analysis for -- the sub-analysis for
12 Gulf War deployed veterans within the next month in
13 both of those data sets. We can do it pretty quickly
14 in the out-patient set because that analysis is
15 complete, but in-patient we are still finishing up the
16 last bits of that analysis.
17 DR. TAYLOR: For the in-patient data that
18 you already collected, what was the average stay in
19 the hospital? Do you have any way of knowing that?
20 MS. HUNTER-YOUNG: For 1994, I don't have
21 that off the top of my head. I can -- we do collect
22 length-of-stay variable, and I can take a look at that
23 if you would like that and give you that information.
24 MAJOR KNOX: Nancy, the other thing that
25 you might think about doing is publishing some of your
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1 results in The Registry, a quarterly magazine that
2 Persian Gulf veterans get, so that they can get some
3 feedback as well as to what you're doing to following
4 up on complaints.
5 MS. HUNTER-YOUNG: Yes. Okay.
6 MR. McDANIEL: So, your office is involved
7 with helping the medical centers interpret the data.
8 MS. HUNTER-YOUNG: Yes. Yes, we are. We
9 receive a lot of follow-up calls after the results go
10 out for additional analyses, cutting the data by
11 primary diagnosis or by gender or just interpretation
12 of what the scores mean and how do the benchmark
13 scores compare and how are they adjusted. So, we do
14 a lot of work with VA medical centers.
15 CHAIRWOMAN LASHOF: What work do you do
16 with them on -- after analyzing the data of corrective
17 action that needs to be taken, if any?
18 MS. HUNTER-YOUNG: Well, we get involved
19 in consultation with them if they request some
20 assistance in follow-up survey design or planning.
21 We've done some of that. That has been the choice of
22 certain directors, instead of going the focus group
23 route they have decided to do a small follow-up
24 survey.
25 Some of the hospitals recently in the past
265
1 two months have had an interest in replicating our
2 exact methodology on a more frequent basis. We
3 currently do these surveys annually and they are
4 interested in maybe doing the exact -- using the exact
5 same methodology and doing it biannually using our
6 national survey once a year and then conducting it
7 locally at their facility.
8 So, we've gotten involved recently in a
9 lot of requests for that to measure interventions that
10 they're planning to put in place.
11 CHAIRWOMAN LASHOF: Any other questions?
12 If not, thank you very much. It was very
13 interesting. We appreciate the time.
14 MS. HUNTER-YOUNG: Okay. Thank you.
15 CHAIRWOMAN LASHOF: Our next item on our
16 agenda, then, is for further discussion about the next
17 steps that are planned and any additional follow-up
18 that any of the committee feels are indicated from any
19 of the things we've heard today, where we go from
20 here.
21 Maybe first, Robyn, you could review what
22 is planned for us so far, and then people can say what
23 more they want.
24 MS. NISHIMI: Sure. What the staff is
25 interested in knowing primarily from this section is
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1 what follow-up you might want us to pursue on the
2 topics that we heard here.
3 To keep it in context, the upcoming
4 events, on April 16th there'll be a panel meeting in
5 Atlanta, Georgia, at the Atlanta Radisson Hotel. The
6 focus of that particular meeting will be chemical and
7 biological weapons.
8 On May 1st and 2nd there will be a full
9 committee hearing in Washington, D.C., at the Omni
10 Shoreham, and the primary focus, although not the
11 exclusive focus, again, will be chemical and
12 biological weapons.
13 And then on July 8th and 9th there will be
14 a full committee meeting in Chicago, Illinois, and at
15 the Ambassador West Hotel. And at that meeting staff
16 hopes to be able to brief the committee on its work in
17 evaluating the various risk factors. So we'll
18 dovetail somewhat with today's meeting.
19 CHAIRWOMAN LASHOF: Okay. Any suggestions
20 people have for staff about specific things that they
21 want them to be sure to follow up on, look into, be
22 sure we cover either at the panel meeting or at the
23 next two full meetings?
24 MAJOR KNOX: Joyce, I think just following
25 up on the presentation that she just now made, we have
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1 a lot of complaints from veterans that give testimony
2 about certain physicians and certain VA's. And is
3 there any way we're tracking that regarding their
4 testimony such that staff could provide her survey
5 team with those names and facilities?
6 MS. NISHIMI: I hadn't thought about
7 providing Nancy Hunter-Young with the facilities about
8 which we have heard testimony, but that's certainly
9 something we can explore with the VA.
10 CHAIRWOMAN LASHOF: All right. That's a
11 good suggestion that we at least find who is the most
12 appropriate, if it's not Nancy, that we make sure that
13 the VA gets that feedback ---
14 MAJOR KNOX: And the good feedback as
15 well.
16 CHAIRWOMAN LASHOF: --- and get some
17 follow-up back and that we get feedback on where that
18 stands.
19 MS. NISHIMI: On an informal basis,
20 obviously. Many VA employees have attended some of
21 the regional panel meetings, and so they receive the
22 feedback as it comes in to you. On a formal basis, we
23 don't transmit it per se. But that's how we've been
24 handling the public comment that we receive.
25 CHAIRWOMAN LASHOF: Any other issues that
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1 -- well, I think staff have been doing an excellent
2 job of getting us good background material and setting
3 up these meetings and making sure they do cover the
4 major things that we want to cover.
5 Could you tell us a little more about the
6 plans for the panel meeting on chemical and biological
7 warfare for April?
8 MS. NISHIMI: The chemical -- the panel
9 meeting in April will be obviously to receive public
10 comment from the Atlanta, Georgia, area and surrounds,
11 and we'll spend a fair amount of time on that. And
12 then the principal focus of this panel meeting will be
13 to look at the government's investigations ongoing
14 into chemical and biological warfare incidents,
15 reported incidents, and as well as non-governmental
16 investigations into potential exposures as reported by
17 a couple of private sector individuals who have been
18 following the topic.
19 The full committee meeting on May 1st and
20 2nd will report on that panel meeting, and then we'll
21 continue the exploration with health effects, health
22 risks of possible low-level exposure, et cetera, and
23 there will be several panels that encompass those
24 topics related to CBW.
25 CHAIRWOMAN LASHOF: What further work are
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1 we planning to do around the depleted uranium report?
2 MS. NISHIMI: I anticipate that that will
3 be part of the July meeting when the committee
4 evaluates the potential risk factors of service in the
5 Gulf War.
6 CHAIRWOMAN LASHOF: Okay. Any other? If
7 not, I guess I can turn it over to you, Jonathan, to
8 close the meeting.
9 MR. FOSTER: The meeting is now concluded.
10 (Whereupon, the meeting was concluded at
11 4 :24 p.m.)
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