PRESIDENTIAL SPECIAL OVERSIGHT BOARD
FOR DEPARTMENT OF DEFENSE INVESTIGATIONS
OF GULF WAR CHEMICAL AND BIOLOGICAL INCIDENTS
Public Hearing
Thursday, April 22, 1999
Buena Vista Theater
University of Texas-San Antonio
San Antonio, TX
ACTING CHAIRMAN:
LTG (Ret.) Marc A. Cisneros (biography)
BOARD MEMBERS IN ATTENDANCE:
Dr. Vinh Cam (biography)
RADM (Ret.) Alan M. Steinman (biography)
ADM (Ret.) Elmo R. Zumwalt, Jr. (biography)
BOARD MEMBERS NOT IN ATTENDANCE:
Hon. Warren B. Rudman (biography)
Hon. Jesse Brown (biography)
CSM (Ret.) David W. Moore(biography)
EXECUTIVE DIRECTOR:
COL (Ret.) Michael E. Naylon (biography)
PARTICIPANTS IN ORDER OF APPEARANCE:
Mr. William Vega, Director of Research & Policy Institute, UTSA
Councilman Roger Flores, Mayor Pro Tem, San Antonio
Ms. Ann McGuire, Designated Federal Officer
General Marc A. Cisneros (ret), Board member
Admiral Elmo R. Zumwalt (ret), Board member
Rear Admiral Alan M. Steinman (ret), Board Member
Dr. Vinh Cam, Toxicologist, Board Member
Mr. Roger Kaplan, Deputy Executive Director
Dr. William H. Taylor, Environmental Health Analyst
CMSgt. M. Wayne Smith (ret), Executive Vice President, NCOA
Mr. Juan Mireles, Commander, Department of Texas, American GI Forum
Dr. Robert Haley, Southwestern Medical School
Mr. Karl B. Laine, Civilian contractor deployed to Gulf
Mr. Gerald W. Sohn, Civil servant deployed to Gulf
Mr. Juri Koern, Civil servant deployed to Gulf
SFC James H. Hager, (ret), Gulf War veteran
Sgt. Michael Hood, (ret), Gulf war veteran
SFC Tyrone Johnson (ret), Gulf War veteran
Sgt. Jonathon Roger Lopez, (ret) Gulf War veteran
Ms. Patricia Axelrod, Director, The Desert Storm Think Tank, and Veterans' Advocate
INDEX
Welcoming Remarks
Mr. William Vega ......................... 4
Councilman Roger Flores .................. 5
Call to Order
Ms. Ann McGuire .......................... 5
Introduction of Board Members ................. 6
Special Oversight Board Presentation
Mr. Roger Kaplan ......................... 13
Dr. William H. Taylor .................... 20
Veterans Service Organizations Comments
CMSgt. (ret) M. Wayne Smith . ............ 25
Commander Juan Mireles ................... 32
Research Presentation
Dr. Robert Haley ......................... 41
Veterans' Comments
Mr. Karl B. Laine ........................ 75
Mr. Gerald W. Sohn ....................... 83
Mr. Juri Koern ........................... 91
Sgt. (ret) James H. Hager ................ 101
Sgt. (ret) Michael Hood ................ 111
SFC (ret) Tyrone Johnson ................ 118
Sgt. (ret) Jonathon Roger Lopez .......... 124
Chemical Weapons Fatalities
Ms. Patricia Axelrod ..................... 128
Final Remarks ................................. 149
MR. VEGA: My name is William Vega, and I am the director of the Metropolitan Research and Policy Institute here at downtown UTSA, and we're happy to have you in our new installation here. I think this is probably only around the 15th or 16th event we've had in here so far since we opened up, so we want to welcome you for what we believe is an extremely important event, and that is why we are very pleased to host this.
On behalf of President Kirkpatrick of the University, on behalf of Jessie Zapata, the provost for the downtown campus, I want to be certain that everything goes well in these hearings.
Quite -- Aside from that, personally I can tell you I am -- in -- in fact had experience as an epidemiologist, and I know that the task that's being undertaken here it is something of real importance, and it's an extremely difficult undertaking to carry out successfully. So I certainly wish the absolute best opportunity, performance, and success for what's going to occur here this evening.
On behalf of the university I'd like to, as I say, welcome you and now welcome to the podium the Mayor Pro Tem, Roger Flores, also Councilman of District 1 of the city of San Antonio. Thank you.
MR. FLORES: Thank you so much, Doctor. Good evening. My name is Roger Flores, District 1 and mayor Pro Tem, and on behalf of the city of San Antonio, greetings, I would like to welcome everyone here tonight.
This topic has been of particular interest to San Antonio due to our strong ties with the military, including five bases and numerous retired, active, and reserve duty residents. I look forward to hearing tonight's comments and would like to express to The Board, who are welcome also to San Antonio, and that not to forget that it is Fiesta week. So when you finish with your tasks, please enjoy the rest of the city.
MS. MCGUIRE: Good evening everyone. And on behalf of the White House, I'd like to thank the Board and the staff for convening this very important meeting. I'd also like to thank those appearing before the Board and those in the audience. This panel was chosen by the President to report to him as an oversight board of the Department of Defense to insure that all their investigations are thorough and timely.
I'm the designated federal officer of the Board, and I'm responsible for calling the meeting to order and for adjourning the meeting. So at this time I'd like to call the meeting to order.
GENERAL CISNEROS: Ms. McGuire, thank you so much. Ladies and gentlemen, my name is Mark Cisneros, I'm a retired lieutenant general from the Army. Currently I'm president of Texas A & M, Kingsville. I am a board member and acting as a chairman for this meeting on behalf of Senator Rudman who is our chair, who regrets he couldn't be here today because of the recent assignment he had from the President involving some espionage and security issues of Los Alamos. And he was not able to be here today. He's a very active participant.
Another prominent member of our board here who is not with us is former Secretary of Veterans' Affairs, Secretary Brown, also regrets not being here, his wife is recovering from surgery, and was not able to attend.
But with me as board members, who will shortly offer you a quick overview of -- of their function -- But let me introduce them at this time. With us today as a member of the board is Admiral Elmo -- Elmo Zumwalt, former Chief of Naval Operations, veteran of World War II, Korea, and Republic of Vietnam. He's an Agent Orange advocate and had a very personal involvement in that in view of his son dying of cancer as a result of Agent Orange.
Also we have with us Dr. Vinh Cam to our -- I'm sorry, to my left. She's an immunotoxologist. She spent 10 years with the Environmental Protective Agency, and a very active participant in our panel. Was from Cambodia. And a very active participant.
Also with us is -- to my left here, Rear Admiral Alan Steinman. He's retired Public Health Service, formally the Surgeon General of the Coast Guard medical department and the -- of the -- and other health -- the Coast Guard and -- and some other service with the government regarding health issues.
I want to start off, ladies and gentlemen, by -- by -- again covering what -- our purpose of our San Antonio meeting. We're here to provide to the public an overview of our Special Oversight Board activity since November, and part of our agenda, we're going to give you a quick overview by some of the staff members of this board's activities and the purpose of it.
We also are here to hear firsthand testimony from Gulf War veterans and spouses about environmental and other potential health exposures.
We're also here to permit the Noncommissioned Officers Association and The American GI Forum, two San Antonio based, national veterans' service organizations, each with over 140,000 members, to present their concerns, as well as their views, on recommended oversight activities.
We're also here to allow Gulf War researchers to discuss their works and findings. And part of that, ladies and gentlemen, I'd like to add my personal remarks to what our purpose here is: We were appointed because each of us are not betoken to anyone. None of us here on this panel are government employees, other than the representative of the White House who was required by -- by the procedures to open and close the hearing. But the rest of us here are not government employees. We're not betoken to anyone, we're not here to defend the Department of Defense or to put down anything or to be advocates or pro or con against any issues like that. We're here to ensure -- as the White House representative said, to ensure that the activities by the Department of Defense and other government agencies addressing the issues are in fact listening to the problems and taking the proper course of action.
We're not going to here -- be here to get into an argument, to defend or to do anything like that. We're here to ask questions, to draw our observations. We will be submitting an interim report to the President, and we're not going to hold anything back, what we feel needs to be said, to try to bring closure to this issue, what is bothering the veterans, what is the problem, and what's being done by the government. And I want to assure you of that and give you my personal commitments. As most of you know, I have spent a lot of time here in San Antonio, and I want to tell you that every member of this panel here is committed to that.
Now, we have a large agenda here today, and -- and I would ask that in fairness to the members that are -- the people who have expressed an interest to testify who are at the tail end of the presentation, in fairness to them, as we start hearing these presentations here, that you limit yourselves to the time that has been given to you. And then I would appreciate that when I generally go like this to you (indicating), that means you've got about a minute to go, so that we're not unfair to the people at the tail end of this. We want to hear what you have to say, but I ask that you focus on what the purpose of this panel is here. We're not an investigative panel, we're here to hear your concerns and make sure it's germane to the issue at hand and that we -- we have a recorder here -- and -- and to ask questions. The questions will come from this panel. We're not going to get into cross arguments here at all. That's not the purpose of this panel.
The Board, as I indicated, is prohibited from conducting scientific research. That is not our purpose. And we do not have the authority to oversee clinical care. We're not here to evaluate the clinical care at any one institution itself. But that's part of our concern about addressing, though, what the -- the identification of the issues. We're not involved with the -- with the pro or con on veterans' benefits and other compensatory issues.
The Board is aware of these issues and may consider recommendations in these areas, although they are -- are outside our chartered responsibilities. The board is well aware of and empha -- empathizes with those veterans who are experiencing health problems. The Department of Veterans' Affairs has sent representatives, and I would ask that if they're here for -- if they identify themselves before we proceed. Do we have --
MR. KAPLAN: Pat, could you stand up with Beverly from benefits. [stands]. Thank you. And then Diana Struski and her crowd from the VAMC.
MS. STRUSKI: Dr. Pauly, Henry Brown, and then our research, Dr. (inaudible) and his staff.
GENERAL CISNEROS: Thank you. I now would like to call on board members to comment -- provide their comments to you before we proceed, and I'd like to start with Admiral Zumwalt.
ADMIRAL ZUMWALT: I have very little to add to that excellent presentation by the gentleman who I'm proud have as my boss for tonight's activities. I just want to say a word or two about the confidence that I think you can have in our objectivity and in our interest in getting at the facts that we're permitted to delve into with regard to our charter.
First, Senator Rudman is, based on my knowledge of him and experience with him, a tremendously objective person who will take guidance from everyone and count out no one. Second, this President is dedicated to the issues of care of veterans. I've had the opportunity to work with him over the last 6 years -- years with regard to Agent Orange, and I can tell you that he not only has followed what is going on in the field, but he has pushed the bureaucracy to move faster with regard to recognizing those diseases that science has concluded are related to exposure to Agent Orange. So you've got a board that reports directly to this President, you've got a President who is very interested in the human equation with regard to veterans, and I think you can have high confidence that the truth to the best of our knowledge and ability to see it is going to be presented to the President.
And I think -- I would underline what the General has said about the objectivity of all the board members, and I certainly agree with that. Thank you.
GENERAL CISNEROS: Thank you, sir. Dr. Vinh Cam.
DR. CAM: I just want to say that I'm very honored to serve on this board, and I'm personally committed to the mission of the board that has already been described by General Cisneros. Thank you.
GENERAL CISNEROS: And Admiral -- Rear Admiral Alan Steinman.
ADMIRAL STEINMAN: I concur with the -- the comments of my board members. Since I retired from the Public Health Service and the Coast Guard, this has been the topic that has taken up by far the largest time and interest. I can concur that -- that it's a very interesting topic, a very timely topic. We -- We know that there are a lot of veterans who are ill and wanting answers from the government, and our job is to -- to oversee the fact -- oversee the investigations that the Defense Department does to provide those answers to our veterans.
On a personal note, let me just say it's a pleasure to be back in -- in San Antonio again. As a military medical officer I spent many, many -- visited San Antonio many, many times, and so it's always good to come back, particularly during Fiesta week.
But I don't want to say too much more, I want to save the time for -- to hear comments from the veterans and others to hear what you have to say, suggestions to us on -- on directions that we should take with the board. So with that I will stop talking. Thank you.
GENERAL CISNEROS: Thank you. And what we'll do now is go to the -- the board presentations to you by Roger Kaplan and Bill Taylor.
MR. KAPLAN: Thank you, General Cisneros. And good evening to everybody, thank you for coming, I'm Roger Kaplan, I'm the Deputy Executive Director of the Staff. I served in the Army for 22-and-a-half years, and I'm a 40-percent service disabled veteran.
First slide is pretty self-explanatory, we're the President's Special Oversight Board.
Next slide, please, Sandra.
The President ordered the creation of The Special Oversight Board by executive order. This was in response to recommendations from the Presidential Advisory Commission and advice from other areas that the Department of Defense required additional oversight in the conduct of its investigations of Gulf War illnesses.
Key points to be made is that the board itself is not authorized to conduct its own research; however, this does not prevent us from taking advantage of all ongoing research conducted not only within the federal government but also at the state -- and the -- the non-governmental researchers.
We have two reports that are required, one interim, nine months after we started our oversight activities, which is this August, and then a final report, which will be due in -- in May of the year 2000. And we will be reporting to the President through the Secretary of Defense. However, our findings are not going to be edited or changed by anybody from once we write them and once they get to the President's desk.
Next slide, please.
We are governed by the Federal Advisory Committee Act, which means that we operate in the open. This is not a secretive group. If we have four or more of our board members come together we're required at least 30 days in advance to advertise this in the Federal Register. We also have in terms of -- of shall we say oversight on us -- (nonintelligable) -- responsibilities, OMB, there's congressional offices, senators, congressmen. Also the President himself is looking and seeing what we're doing. In addition, there's an informal review of our activities by individual veterans, veterans' service organizations, the public, the press, so we're just not going on our merry way.
Next slide, please.
Members are eligible for compensation, and generally this is restricted to per diem travel and such. As we talked about meetings, we have advance notice in the Federal Register, plus we also take advantage of the national veterans' service organizations and others to get the word out. Our locations are designed to be easy access. We're not going to be having hearings somewhere in the wilds of Wyoming. We want to be in an area that you can get to easily by major transportation. We invite a number of speakers, and -- who may have something of interest to the audience, particularly for the board, and they're always open to the public.
Next slide, please.
A brief word on the -- the board members. Just like to point a few things out about -- about each of them. They were all very carefully selected at the White House. Senator Rudman started off -- his first job was being an infantry company commander in the Korean war where he received a silver star and a purple heart. He's a two-term senator from New Hampshire, and founded the Concord Coalition. You'll know him from the Graham-Rudman Act. He's in -- He's the head of two other very important boards. He's also -- as General Cisneros recounted, is investigating personally for the President some security lapses at several of the labs in New Mexico. And he is also -- works at a very prominent law firm.
Secretary Brown served in Vietnam as a Marine where he was severely wounded. He later worked himself up through the Disabled American Veterans to become their executive director, and then became the second Secretary of Veterans' Affairs. Did a great job there, and now runs an independent consulting firm.
Dr. Vinh Cam is a noted immunotoxocologist. She's worked as a (nonintelligable) for the EPA. She worked in New York City with the Triborough Bridge Authority, and has her own independent consultancy as well.
General Cisneros didn't mention that he served two tours in the Republic of Vietnam. He didn't mention that he also served in combat in Panama, that his son deployed and then was a veteran of the Gulf War. He ended his distinguished Army career as the commander of Fifth Army here at Fort Sam Houston in San Antonio and is now the president of Texas A&M, Kingsville.
Sergeant Major Moore isn't -- isn't with us tonight, but he spent over 30 years in the Army Reserve. He's a veteran of Vietnam, a veteran of the Gulf War. He retired as the lead murder investigator for a suburban Chicago county. He's now the county coroner for Kane County, Illinois as well.
Admiral Steinman is a -- is a medical doctor, he has a master's in public health, retired as a rear admiral in the Public Health Service and as the Surgeon General of the Coast Guard, and runs his own independent consultancy.
Admiral Zumwalt was the youngest person ever selected to be a full admiral--four stars--in the Navy, the youngest Chief of Naval Operations, commanded U. S. Naval forces during the Vietnam War, a veteran of not only that conflict but World War II and Korea. He -- He's the person who made Agent Orange a success and continues to be involved with a vast number of charitable organizations.
Next slide.
We won't go into much depth about the staff members, but I would like to point out that of the eight members, four of them are military veterans. We do have also an -- an Air Force sergeant who's supporting us, as well as an officer from the Public Health Service.
We have some very strong ties with the veterans' community. Several of us actually worked very closely with them. One member was the executive director of AMVETS. We have on our staff a Ph.D. in toxicology and a Ph.D. in epidemiology. So there's quite a bit of medical expertise, not only on staff but certainly supplementing our board members.
Next slide.
As noted earlier, there are two interim reports which you can clearly see yourself.
Next slide, please.
Meetings. This is our second meeting, first one held in Washington. As you can see, we've got a definite date for our next meeting in Washington. We're still working on exact dates for our meetings in Seattle and Washington D. C. If additional meetings are warranted, then we will certainly advise everybody of that.
Next slide. Thank you.
Our first hearings were conducted at the Senate Hart Building, went almost 8 hours each day and we started by providing individual veterans the opportunity to talk to us about their recommendations on our oversight proceedings. In addition, we heard from rep -- representatives from national veteran service organizations. A few because of a variety of reasons, could not be there, and we're glad that -- that we can have them here tonight.
We also had a number of governmental agencies come in to respond to a rather detailed set of questions that we posed to each of them. And we also heard from other researchers as well, both within and without the government.
At this point Dr. Bill Taylor is going to talk to you about the investigations -- rather the analyses of the Department of Defense investigations of several suspected chemical agent usages. Dr. Taylor.
DR. TAYLOR: Thank you. My name is Bill Taylor, and I am staff analyst here with the Oversight Board. I'm an environmental toxicologist, and I am an officer with the U. S. Public Health Service. I'm on loan from the Public Health Service to the Board.
I would like to talk with you very briefly about some of the work that the Oversight Board has done to date. This will not be a comprehensive review of all of the work, but I want to focus on the review that the board has done at this stage of some of the analyses that -- and the reports that have come out of the Office of the Special Assistant (OSAGWI).
Okay. As you can see here, we have a completed analysis of four of OSAGWI's reports and -- that we have sent over to OSAGWI, and we have a number more that are in progress.
Next slide, please.
Some of the ones on this list have actually already made it into the in-progress list, and the Board plans to introduce more of these as we complete our analyses and send them over to OSAG -- our analyses over to OSAGWI as well.
Next slide.
I'm going to go into some of the analyses briefly. There are additional reports that OSAGWI has released, which the board is considering reviewing. Some of those are information papers, and we're taking a look at those and deciding whether that's worthwhile of our time or not. And there are other reports that OSAGWI will be releasing that we're aware of, and we'll take a look at those as they -- as they become available.
All right. The next -- This slide, as well as the next four, I will briefly summarize the board's findings and recommendations in the four reports that we have provided to OSAGWI so far.
The first is the Czech/French chemical detections. And if you are familiar with it, you would know that this is a series of seven chemical detections that either the French or the Czech units detected in Northeastern Saudi Arabia during January of 1991 in the early part of the air campaign of the war.
What the Board found was that OSAGWI relied on previous analyses and evaluations of incidents 1 and 6 and actually did not apply their own methodology to evaluating those incidents. And we have asked AOSAGWE in our recommendations to go back and use their own methodology and come up with their own independent finding.
The second observation that the Board has made is that in the draft report that OSAGWI sent out for comment in their external review process, their report indicated that the remaining incidents were determined as -- as unlikely. And when they got their external review comments, all of their external reviewers concurred with those. The special assistant then took the report and changed the evaluations of those other five incidents and changed them to indeterminate and published the report. We felt that that was a -- circumventing their external review process, and the Board has recommended to OSAGWI that they reevaluate the incidents, the seven incidents, and send it out for external review again and republish the report.
Next slide, please.
The Kuwaiti Girls School was really about a tank of liquid that was found outside of a school in Kuwait. The liquid was analyzed, and it was found that there was no detection of chemical warfare agent and that the liquid tested positive for a substance that was -- that was nitric acid basically. And we didn't find anything unusual with this case narrative or objectionable, and we felt that conclusions that AOSAGWE reached were consistent with the evidence that they presented. So we are asking OSAGWI to make this a final report and not call it interim at this stage. We felt that this was adequate.
Next slide.
OSAGWI pulled together quite a bit of information for their environmental exposure report "Oil Well Fires," and that's about the extent of what they did. This report is essentially an information paper on oil well fires, and the Board felt that they did not adequately characterize any exposures in the report and that that really needed to be done. So we have recommended to OSAGWI that they rewrite their environmental exposure report and engage a party that can make a health call as to whether those exposures occurred at levels of health concern, and then scientifically peer review the report.
Next slide, please.
This and the last slide I'll have here, or the next slide, concerns the depleted uranium environmental exposure report OSAGWI released, and this was the first of theirs that the oversight board reviewed. The Board felt that OSAGWI had not demonstrated adequate support for its bottom-line conclusion that depleted uranium was not a cause of Gulf War illness and felt that that was not -- it was premature to state that. And other findings have included that -- that the report was not clearly written, and also that there were some contradictions in their report.
Next slide, please.
The Board has recommended to OSAGWI that they verify the appropriateness of levels I, II, and III exposures that they have described in their report and to conduct other research into the -- the question of depleted uranium, and finally, to scientifically peer review their report.
All right. If you would like to get in touch with us, here's some information for you: This is our mailing address, our fax number, our e-mail address, and beginning next week we will have a web page. The oversight board's web page address will be WWW.oversight.gov, G-O-V, oversight being one word, and invite you on behalf of the Board to take a look at our -- our web page, which again we hope to have up and running next week. Thank you.
GENERAL CISNEROS: Thank you. And I might add, ladies and gentlemen, that those are our board recommendations in the interim of our -- of our efforts here that we -- that we were asked to review the case narratives and our comments back to them and we're putting out public. As you can see, there's some things we didn't agree with. And -- And we'll continue on with our efforts in that regard.
The next item on the agenda is to allow our veteran service organizations -- There are two, and they will go first in the order of presentations. And the first one who will be talking to us will be the Noncommissioned Officers' Association, Mr. M. Wayne Smith, chief master sergeant, retired, the executive vice president.
MR. SMITH: Good evening General Cisneros, Admiral Zumwalt, other distinguished members of this Special Oversight Board. As the general said, my name is Wayne Smith, I'm a retired chief master sergeant, having served 33 years in the United States Air Force, of which I'm proud to say over 16 years of those years were in the grade of chief master sergeant, having held numerous senior enlisted positions.
Before I go any further, if anyone is interested I have made copies of my presentation available down here on the corner of the stage. The Noncommissioned Officers' Association is delighted that you have chosen San Antonio as the location to hear from veterans' service organizations, advocates, and Persian Gulf veterans who want to share their concern about military service in the Persian Gulf.
Interesting to hear that many of you have had previous experience with San Antonio, and I hope as the Mayor Pro Tem said, you have the opportunity to enjoy our fine city as far as Fiesta is concerned.
Just to share with you a little bit about the NCOA. It's a worldwide total force organization representing enlisted members of all branches of the uniformed services whose current assignment may be active duty element, as a member of the Reserves or National Guard. NCOA members also include military retirees and veterans who have given years of their life in uniformed service to the United States of America. The NCOA International Auxiliary likewise is comprised of the spouses and eligible family members of those whose career was in the profession of arms.
As the general said at the outset, we are an organization of over 140,000. Right now we are sitting at approximately 148,000 members. Just to share with you a little bit about the congressional charter of NCOA, which recognizes the unique services of the association to: Uphold and defend the Constitution of the United States and support a strong national defense with focus on enlisted military and veteran issues; promote military professionalism of currently serving noncommissioned and petty officers; promote health, prosperity, and scholarship for members and their families; improve and extend the benefits for military members, retirees and veterans and their survivors; provide employment transition assistance and claim representation for military personnel veterans and their survivors in both the Department of Defense and veteran communities.
I might add that I am very proud to serve as the executive vice president of NCOA as we continue to support our enlisted personnel. NCOA leaders at the national level, chapter officials, association accredited veteran service officers routinely meet service personnel, NCOA members and their families worldwide to discuss issues, provide counsel or offer military and veteran representation in their respective communities. It is from such organizational activities and private representational meetings that NCOA became involved and proactive on the issues impacting Persian Gulf War veterans and their families.
NCOA is a service organization, and we're here tonight to voice concern on issues believed to be in your sphere of over -- oversight relative to health and other issues consistent with the organizational goals of NCOA, which I just addressed. Our national legislative program over the years has worked legislative solutions for the Persian Gulf Register, presumptive findings for undiagnosed illnesses, processing of claims, VA medical research and other initiatives. Further, NCOA has testified on seven occasions before congressional hearings on the illnesses of Persian Gulf War veterans.
The association was also an aggressive advocate to establish the functional role responsibilities for the Office of the Department of Defense Special Assistant for Gulf War Illnesses, The Persian Gulf War Presidential Advisory Commission, and also your Special Oversight Board.
In addition to the significant work cited above, NCOA asks that your efforts include the following three areas. The first pertains to the charter of The Special Oversight Board. Oversight responsibility details and I quote: "Detection of and exposure to chemical or biological warfare agents and environmental and other factors that may have contributed to Gulf War illnesses," end quote. Your review should include oversight relative to depleted uranium munitions -- munitions and exposure of personnel to depleted uranium.
Related issues in this regard are: Ensure that additional Department of Defense research is programmed to determine the long-term effects of depleted uranium contamination on personnel, equipment, and the battle field environment; determination of whether there was or should be an identification process to identify personnel and all equipment involved in depleted uranium incidents. This policy question would preclude advertising years later for self-reporting of personnel who might have been present or exposed as the result of depleted -- of a depleted uranium incident; insuring Department of Defense's long-term depleted uranium research program continues to advocate need for medical research under the auspices of the VA Medical Research Program. Specifically, to continue monitoring and determining health consequences for the 32 military personnel wounded by embedded depleted uranium fragmentation. Research to continue throughout their lives and that of their offspring.
My second point covers predeployment blood serum samples that were obtained from military personnel assigned to the Persian Gulf. These samples were provided the Maryland Serum Repository to be stored for possible post-deployment comparison as needed. What is the current policy regarding these serum samples concerning any research unrelated to the donor? The ethical question is whether the serum donor will be advised of any medical determination arising from research or analysis. Will these serum samples be available to the veteran's medical care provider if that provider wants laboratory comparison for diagnosis purposes? Lastly, what is the final disposition program for these serum samples?
My third point is NCOA has long advocated peer review of scientific and medical research under the control of federal agencies. Peer review serves not only to validate research findings, but adds credibility to the final conclusions of the research. The NCOA requests that the Board's oversight into research include external peer review as appropriate.
General Cisneros and members of the Board, NCOA greatly appreciates the opportunity you've afforded us to share its concern on these Persian Gulf issues. Thank you very much.
GENERAL CISNEROS: Chief Master Sergeant Smith, before you leave, let me see if -- First of all, let me tell you -- And I almost used the term "sergeant major."
SGT. SMITH: That's quite all right, sir. I've had that done and it's all right.
GENERAL CISNEROS: I want to tell you that I have a clear copy of what you requests are and what you want answers to, and -- and we've got that solid. You have our appreciation. But I'd like to see if any of our members have any questions of you before, if you don't mind any questions.
SGT. SMITH: Certainly, sir.
GENERAL CISNEROS: Sir?
ADMIRAL ZUMWALT: It's a very reasonable series of recommendations.
GENERAL CISNEROS: Thank you, sir. Any -- Any here from this side of the table?
DR. CAM: I'm just curious. You mentioned about final disposition program for serum. Do you have any idea about that? Do you have a suggestion?
SGT. SMITH: I do not at this time.
DR. CAM: That's all.
GENERAL CISNEROS: Thank you, Sergeant Major. I appreciate it.
SGT. SMITH: Okay. Thank you, sir.
GENERAL CISNEROS: Our next presentation is The American GI Forum, Juan Mireles, Commander of the Department of Texas.
MR. MIRELES: Honorable members of the Board, Chairman, General Cisneros, and I guess my first boss, Admiral Zumwalt. I was -- I guess I was in the Navy from 1969 to '73, and it's a pleasure to be in the same -- same room with you today.
The city of San Antonio is very proud to have this full board before us today, so proud that when you wake up tomorrow morning you'll be surprised, but I believe they're going to have a parade in your honor. So try to be there at 2:00 o'clock. I think that City Councilman Flores forgot to mention that, but that's -- that will be my responsibility.
First of all, the organization has been around -- the American GI Forum has been around for 50 years. Finally last year we were honored after 50 years of service to the veteran community in receiving our charter, our congressional charter, in September of 1998. It was signed by the President of the United States, and for that we're very proud and very happy that we now got a chance to join our brothers and sister organizations in the efforts in helping our veterans.
In 1991 I remember that we as an organization came together with other veterans' organizations and had decided to support not only the veterans -- military as they were getting nearer to the Persian Gulf war, but we also supported our country, we supported our government, and we supported our President. And our support to the Persian Gulf veterans has never been wavered. Since 1991 we have supported them when they were over there, and we continue to support them as they return back.
The American GI Forum is the largest Hispanic veterans organization. Somebody once told me we're probably the only one, but we're pretty large. Last year in Corpus Christi, as I mentioned, we received our charter. As an organization that advocates for all veterans, we appreciate the opportunity to come before you with our views and matters before us. As I am sure all of you are aware, veterans' organizations by designs were not professionals in the field of studies this board must review and assess. Our expertise lies in feeling the pulse of our veterans' community and our constituency. We also have probably the best veterans' employment program in the country.
To share that evidence that we receive and we want to provide to you, it is not our views, it is the views of veterans that visit our network of chapters through the country.
The American GI Forum constituency appreciates the efforts undertaken by this body and others at researching the possible factors causing the Gulf War illness. It's frustrating to all this illness, it still defies factors investigated to this date. Nevertheless, it is important to the Department of Defense, researchers, that the Board continue to follow the policy in open and honest disclosure as such potential factors for the illness is studied and eliminated. To this date we are satisfied with the efforts that has been put forth in this regard, and today's presentation is a clear indication of that. And such forums that you have today and the future also help the veterans' community.
It may be helpful, however, to simplify the information as much as possible in distributing to the general public. As you know, we -- our constituency consists of members throughout the country, and as simple as the information can be provided the more easier it is. We remind you that the technical matters of your work may be essential to your deliberations and also for general consumption more basic working and more opportunities.
Some recent commentaries we have received concern the lack of opportunity for active duty personnel in participating in some of the special studies being considered, such as the extensive testing and evaluations that are being performed at the Houston VA medical center in coordination with the Baylor College of Medicine. It is the perception of some that our active duty members that may be missing out on the opportunities that other veterans have by participating in this study.
The American GI Forum membership has been concerned with timeliness on all these studies. Next month will mark the fourth anniversary of the executive order that established the Presidential Advisory Committee on Gulf War veterans' illnesses. We accept the fact a universally accepted cause for the illness has yet to be determined. We are nonetheless gravely concerned that the services that the veterans need are also being delayed.
We encourage this board that exercise the oversight responsibility by ensuring that the progress of the services is not delayed while awaiting the final determination on the pending studies being conducted. Veterans claiming element -- ailments from the Gulf War should be served on the presumption of any actual ailment that all will be eventually be identified and classified. There is too much evidence available to discuss the claims of thousands and thousands of veterans currently suffering from the various medical manifests of the Gulf War illness.
In closing, I would also urge you to allow in your data accumulation for the variables that could apply to race or ethnic groups. Many times before we have experienced the problems that we receive input from the network of members that required inquiry information pertinent to the Hispanic veterans only to be told that the breakdown for Hispanic veterans are not available. It makes sense that your oversight role assures that this data for such breakdown is planned for up-front so that we won't have to hear the same excuses in the years to come that this information was not available.
In closing, we thank you very much for showing up to the beautiful city of San Antonio, and please be there at the parade tomorrow at 2:00 o'clock. Thank you.
GENERAL CISNEROS: Thank you, Commander Mireles. You've hit the essence of what our purpose is, and we're committed to following up on those things, many of which you've mentioned there. I'd like to see if there are any board questions. Yours sir?
ADMIRAL STEINMAN: Okay.
GENERAL CISNEROS: Admiral, sir?
ADMIRAL STEINMAN: Sir, could you expand a little bit on your comment about active duty personnel wanting to be included in the clinical research programs.
MR. MIRELES: It has been brought to our attention that there are some studies being done at Houston at the VA medical center, and it is for veterans, Persian Gulf veterans, but we believe that active duty personnel are not allowed to participate in those studies. We're asking, if that is the case, that these active duty personnel be allowed to participate in these studies as well.
DR. CAM: Yeah. Just one question on your recommendation for minority breakdown. That has never been done before or there is not enough data on that?
MR. MIRELES: And we realize that, and that's why we're asking you at this time, if at all possible, we would appreciate if those figures could be accumulated so that we can use these figures in the future. I realize that -- that it has not been in the past, but this is something that we'd like to recommend with this board and hopefully for future boards. In the past they've asked us for information about our own group, how many Hispanic veterans served, how many -- how many participated. And when these figures are asked from us and we cannot accumulate them or get them ourselves, it's very difficult to give these figures as well. And so then it becomes a guessing game for an organization like ourselves, and someone will probably say, "Well, where did you get those figures?" I think it's important to us for us to identify the organization that we serve -- the organization that I serve is how many served -- how many were affected by the illness, how many received disabilities, so that we may use that information and provide that information specifically to our constituency.
DR. CAM: Thank you.
MR. KOERN: Can we have a question from up here?
GENERAL CISNEROS: Are you going to be speaking? Are you on the --
MR. KOERN: I'd like to make him aware of something.
GENERAL CISNEROS: Okay. I'll allow it this time, but very briefly.
MR. KOERN: Sir, yesterday morning I found out the same people that are testing up there, they're excluding the very, very sick people. Because -- Because I had three cancer operations two years ago in '97 and '98 and because I -- I can't breathe, I have no energy, and because I took some antibiotics for 30 days within the last 2 years, I'm excluded from those studies. I wanted to get help, see if I could be tested and cured, and they cannot do that because of -- because of the exclusions.
GENERAL CISNEROS: I don't -- I don't -- I don't think he handles that issue.
MR. KOERN: Well, I understand that.
GENERAL CISNEROS: He just made a statement. But I would encourage you to -- to testify here, because we're -- we're making this --
MR. KOERN: (Inaudible) I'm testifying on what you people asked us to. But I will bring that up if you want me to, sir.
GENERAL CISNEROS: We would appreciate, yes. Yes.
MR. KOERN: Okay.
GENERAL CISNEROS: Because that issue that you're raising should be addressed to the Board. And --
MR. KOERN: All right, sir. I apologize to --
GENERAL CISNEROS: No, no problem. I just want to make sure you have an opportunity, but it's -- it's appropriate that you be up here test -- so we can then have some dialogue with you --
MR. KOERN: All right.
GENERAL CISNEROS: -- rather than a question to one of our presenters. Okay?
Commander Mireles, thank you so much for appearing before us today, and thank you for both -- what both service organizations do for our --
MR. MIRELES: Thank you.
GENERAL CISNEROS: -- soldiers, sailors, and airmen.
Ladies and Gentlemen, that's the end of our veterans' service organizations' presentation. We're now going to go to basically the floor presentation, and we're going to start off, in order to accommodate a schedule -- a schedule, a research presentation that Dr. Robert Haley asked to present to us, and we're offering him that opportunity to do so at this time.
Dr. Haley, are you --
DR. HALEY: Yes, I'm here. Members of the panel and the members of the audience, I'm very pleased and honored to speak to you today. I am an internist in academic medicine at Southwestern Medical School, University of Texas in Dallas. I served a residency at Southwestern Medical School and Parkland Hospital, spent 10 years at the CDC as a commissioned officer in the Public Health Service. There I investigated epidemics and did special studies at CDC for 10 years. Then I returned to the faculty 15 years ago at -- in Dallas to make an academic career of studying epidemics and trying to refine techniques and statistical methods for doing so. And I run a division of epidemiology within the Department of Internal Medicine at Southwestern.
I had no intention of getting involved in the Gulf War illness. I thought it was a psychological problem that -- a very complicated issue that would never be solved. This was back in early '94. One day I was in my office and the president of the university called me up and said, "I need you to come over tomorrow morning, we're going to meet with Ross Perot." And I said, "Well, I don't know Ross Perot. Why do you want me there?" And he said, "Well, he wants to talk about the Gulf War syndrome, that there may be something to this." And so I said, "Good heavens, let's don't get involved in that. It would be a terrible waste of our time. We" -- "We're doing more important things." I -- I had no idea what it was, but I didn't want to get involved.
We met with Mr. Perot, and basically he said, "I go around talking to veterans' groups frequently, have for 30 years, and something new has been happening since the Gulf War. Invariably now when I meet with a group, afterward a wife or a company commander will bring a fellow up and say, 'This isn't the fellow who went over to the war. Something happened and he's a different person now.'" And he said, "You know, the first few times I just excused myself and begged off, but," he says, "this is happening to me every time now and" -- "and increasingly, and I've checked with the" -- "the" -- "the government, and they have said it's stress and nothing to do, and I think they've dropped the ball. And we need an independent study from the government, if you guys will do it, I'll pay for it."
So we said, "Well, look, this is probably psychological, so we're" -- "we will do a study. We'll go out and do a CDC case type control study and see if we can solve this thing, and if it's a psychological problem we'll prove that, and if it's something else, we'll try to get evidence on that as well, but we want you to know there's no preconceived idea."
And he said, "I don't want a preconceived idea, I want to know what it is or" -- "or whether the government's got it right or do we need to go in a different direction."
So we were off and running. We did a study, and I'm not going to present any slides or scientific data, because I know you have the scientific papers we published. Let me just summarize what we've done and where we're going, and then perhaps you'll have some questions about maybe where we should go.
Basically we did what should have been done in 1992 or 1993. There is a well-tested "fire drill" we call it for investigating an epidemic, and if this Gulf War syndrome is an epidemic it should have been handled just -- what we call the "CDC fire drill" for investigating epidemics. It's called a "case control study." It's very simple. Basically what you do is you go into a group of people who you think might contain some of the ill people, you ask for the ill people to step forward, you examine them, you talk to them, and then you write down what's called a "case definition."
Now, look, if I don't get across anything else, the -- the problem -- the reason we're here today instead of having solved this 7 years ago is that they failed to make a case definition: "A case of Gulf War syndrome is defined as this symptom, this symptom, and this symptom or any three of these or whatever," case definition.
Now, Jay Sanford, I'm sure some of you know Dr. Jay Sanford, he was my mentor in medical school, and I -- until he died a year or so ago, he was -- he and I were very close, as I'm sure he was with some of -- some of you all. He came up with a case definition in 1993 from interviewing -- reviewing a large number of records. General Blanck asked him to do this. There's nobody better at doing it. He came up with a case definition, which was known at that time as the "Sanford Definition." For some reason inexplicably in early '94 when Steven Joseph became the Assistant Secretary for Defense, around that era, that case definition was dropped, no case control study was done, and we went off into the CCEP examining individual veterans in a medical context which never could hope to find the -- the -- the nature or cause of an epidemic. In other words, we turned the corner, and we went off into irrelevancy, and that case definition was never used.
In early '94 we got involved, we went to the NIH conference, which by -- by the way, was a terrific effort to set the thing back on the right road. It was -- it was billed as a conference to establish a case definition. Well, at the end, the people on the panel said, "We can't come up with a case definition." So we turned to the right again and -- and went -- lost the opportunity.
Well, sitting there in the audience, I had a toxicologist with me, Dr. Tom Kurt (phonetic), who's also on our faculty and has worked with us all the way through with this, and he looked up at the list of symptoms and then the list of exposures, a third of which where were organophosphate chemicals or similar carbonate chemicals; he, being a toxicologist hypothesized that this may be due to organophosphate induced delayed neuropathy, OPIDN. Organophosphate induced delayed neuropathy. This is simply the brain and nerve damage that is caused by pesticides. It affects agricultural workers. It's a well-known problem in toxicology, but not well known to most doctors, and that was another one of the problems why it wasn't recognized earlier.
He then hypothesized further on that day at the NIH conference that perhaps since no one of these chemicals intoxicated people enough to produce acute symptoms, and that was well known, perhaps combinations of -- people exposed to more than one of these might have had a synergistic reaction, enough to produce a minor brain injury that would not be -- that -- that would -- that would appear months later, which has pressed it in the pesticide injury literature.
We came away from the -- And -- And I was sitting there at the same time thinking, "My goodness, here we are 3 years later, and no one has done the CDC type case control study. How can that be?" So I was sitting there writing the X's and O's about how to do that, since I'd done many of them at CDC, and we came back and immediately designed a study.
We found a unit to study, a military unit. In other words, we didn't ask for volunteers to come forward, that's a mistake, you don't learn anything from volunteers stepping forward. We picked a unit that went to the war and decided to try to contact as many people as we could from that unit so that we would be reaching out and bringing in our own subjects to study. We got -- We picked the 24th Reserve Naval Mobile Construction Battalion, a Seabees unit that participated in the war, reserve Seabees unit, because reserves all come back to the same neighborhood and we can find them. Seabees because Seabees tend to go all over the battlefield, they're not located in just a single area. And so like the sentinel chickens in (inaudible) viral surveillance, if -- if there was a geographical risk somewhere, some of these guys would have had it. So that's why we picked them. We -- We got 250 of them together and administered a questionnaire on their symptoms and a questionnaire on their exposures. We then brought the data back -- and a psychological battery to see if this was post-traumatic stress disorder, or a psychological test. We brought it -- the data back to Dallas, computerized it, did an analysis, expecting to find this was post-traumatic stress disorder or depression or a combination of that sort of thing, and it wasn't. In fact, the psychological -- there was not one psychological profile that suggests PTSD in this unit. We were really surprised.
We then did -- We then tried to establish case definition. Well, there -- that was difficult, and that's why everybody had failed so far. So we used a technique called "factor analysis." It's a fancy mathematical technique to see is there a group of symptoms that hang together. That is, was there a group of people -- could we find a group of people, all of whom complained of about the same group of symptoms. That's what a syndrome is. And in fact there was. There were three -- There -- There was a syndrome with what appeared to be at least three variants. Okay? And this is mathematically. We published this in JAMA, and I'm sure you have those papers. If not, I can certainly provide them. We then thought, "Well, it looks like there really is a syndrome that doesn't look like anything we've seen except possibly a neurological problem, a very subtle neurological problem with three different manifestations."
We compared it to Jay Sanford's case definition and in fact in the paper we show that Sanford's definition overlapped perfectly with our syndromes I and III, our syndrome variance I and III, but it totally missed No. II. Well No. II were the sickest guys. Half of them were unemployed by 1994 and had all left the military right after the war, too sick to serve. Well, I showed that to Dr. Sanford and he said, as I said, "That's obvious. The reason I didn't see any of your syndrome II's, these were the ones that had ataxia, different balance disturbances, really severe difficulty with cognition, with reading and thinking and so forth." He said, "You know, the reason that we didn't see those is because I made my definition in 1993, late '93, from looking at people who were still on active duty in '93, so I saw the syndrome I and syndrome III, but I didn't see the II's, because they were too sick and they were gone by '93. They were out in the private sector by then."
We then compared our case definition with the psychological tests and showed it was clearly not any known psychological condition. We then -- We didn't publish that. We then sat on it because we realized that could be just statistical artifact. It was a big mathematical analysis. Clearly we could have fooled ourselves with a statistical artifact, so we decided at this point to bring in a group of those guys who -- who made -- who had these syndromes, what appeared to be syndromes, to bring them to Dallas along with a carefully matched group of their -- their fellow Seabees who were not ill, matched for age, sex, and education levels, so they would be just like the sick guys, but not sick. So we brought them in, in groups of two to three and four, and put them through a whole bunch of very subtle neurological tests.
In other words, I basically went through the faculty at Southwestern, which is one of the best, largest clinical research centers in the country and said to everybody, "What is the test that would show this subtle brain damage, what is the most sensitive test," because obviously a regular neurological test won't show anything. So we put together a battery of tests, we proposed this to the Defense Department, it went up to Secretary Joseph's office and it was turned down for funding. So Ross Perot funded it, as he said he would.
We brought the people in, the doctors remained blinded to who was sick and who was well so they couldn't influence the results. They just did the tests, put the data in the computer. When we broke the code at the end of the study and analyzed the data, sure enough, the fellows with the symptoms had abnormal neurological signs on these very subtle neurological tests, and the well guys were totally normal. And we published this in the second paper in JAMA. But we still didn't publish this because that suggested that we really did have a neurological syndrome, a subtle neurological syndrome, but it didn't tell us what the cause was.
So we then -- Remember we had -- we had given the -- the people a questionnaire on their exposures, and we put in a questionnaire all the exposures that had been developed by the Defense Science Board, the Institute of Medicine Committees and so forth. This -- this list of risk factors is well known. Put them all in, analyzed this in the computer, and in this analysis, typical CDC epidemic investigation analysis, you're looking for one or more risk factors that all of -- almost all of the sick guys said they were exposed to but almost all of the well guys said they were not exposed to. You see? And that's then a clue to what the cause is.
Now remember, we're the first ones to do this. We're still the only ones who have done this, 7 years later, no one else has done this. Well, in the analysis it jumped out the first day, it didn't take very long. The first day four risk factors that were chemical exposures were strongly associated. Almost all the sick guys said yes and almost all the well guys said no. It's important to point out though there were about ten other risk factors that were not chemical exposures, depleted uranium exposure, combat exposure, the different medicines they took, Ciprofloxacin, etcetera, all of those risk factors were no different between the two groups. So it's not as the -- many of our critics have pointed out, it's not recall bias, that all the sick guys endorsed everything and all the well guys didn't, it wasn't that way at all. It was very specific for risk factors that are chemical exposures, and those were exposure to chemical -- what appeared to be chemical weapon exposures, where the alarms went off, people got in their MOPP 4, up to -- MOPP 4 and put on their uniform -- impervious suits, the marines said, "This is not a drill" and -- and so forth. You know what that is.
The second risk factor was having severe side effects after taking the pyridostigmine tablets. Now, everybody who takes those gets a little bit of diarrhea, maybe a little gastrointestinal stuff, but about 10 percent of Israeli troops in a published study and about 10 percent of our troops in our study had a severe reaction to the pyridostigmine tablets. Okay? That is, they had not only the -- the GIs, but they also had a little clouded consciousness, muscle fasciculations, muscle cramps, and so forth, indicating a much more severe type of side effect.
The third risk factor was exposure to high potency insect repellent. That is, those people who wore insect repellant that was issued by the military that had 75 percent DEET and ethanol. Now, many of the people brought insect repellants from home. Off, which has only about 20 to 30 percent -- 10 to 30 percent DEET in an emollient that's not absorbed. Or Avon Skin So Soft was very popular. You know, that's the toilette water that is a good repellant, but it has no DEET in it. DEET is diethyltoluamide, it's an active ingredient that it repels insects. But the GI -- the government issued stuff was 75 percent DEET and ethanol. Now, both DEET and ethanol, ethyl alcohol, are what are called percutaneous absorption enhancers. They will suck any medicine right through the skin. They're highly lipid soluble, they'll go right through the skin, and they'll pull each other right through the skin. And so that was a very high risk, and it sure -- Sure enough, the risk factor was exposure to DEET. That is, the guys who were sick, many of them said that they used the government issue insect repellent, where that was fairly less -- much less common in the well guys.
Now, we put this scenario together then in an analysis and found that our three syndrome variants had different risk factor profiles, which made sense, suggesting that different combinations of these chemicals would produce damage to a different part of the brain that would result in slightly different symptoms. And that really hung together.
So we then submitted that to the Journal of the American Medical Association, one of the top two journals in the country. It went through 8 months of peer review. This was peer reviewed three times. The Journal was being so careful because this is so controversial and our findings were so countercurrent to what people had -- were saying at the time. All nine peer reviewers ultimately signed off on it and agreed that it was meritorious, should be published. It was published then in January of '97.
We followed up now -- We -- We then proposed -- We -- I went up and visited Steven Joseph, I visited a number of people. We then submitted a grant proposal for -- Given -- Given here that we had these clues -- The first epidemic investigation has come out with some really important clues, we weren't saying that this was the answer, but they were important clues that we felt should be followed up. We submitted a grant proposal to repeat this study -- repeatability is the key thing -- wanted to repeat it. We wanted to enlarge upon it in animal -- Oh, I got ahead of myself.
We then -- Concurrently with this, we -- we -- as soon as we saw those risk factors we made a deal with our colleagues at Duke University and Kansas State University and the EPA and put together a -- sort of the dream team of toxicology animal researchers and tested these chemicals in animals. Sure enough, DEET in insect repellants, pyridostigmine, and the pesticides that were implicated in these things singly by themselves did not produce brain injury, but any two of them cause brain injury in animals, and any three cause severe brain injury. Now, this is the first time is -- that we know that chronic long-term permanent brain damage has been shown to occur from combinations of chemicals. That was a unique finding, and has not been disputed, by the way, in the literature. So here we had clinical risk factors, a clue -- neurological tests, a clue of what the disease is, and even a clue of what the cause was. We put in a grant proposal to follow this up with human studies, animals studies, basic chemistry studies and even some treatment trials to start seeing if we could come up with some treatments spinning off this. Absolutely turned down.
Six months, the peer review, the peer reviewers said, we don't believe this theory. There's selection bias and recall bias, and they came up with 15 reasons. And, listen, this was a brilliant, wonderful protocol.
We then went to Ross Perot, and he funded part of it, and then I went up and talked to some -- to members of the -- service chiefs and the Secretary of Defense and others, Senator Rudman, I talked with him, Sam Nunn and others. They felt there was enough here to follow-up, and they gave us a 3 million dollar grant in a -- a cooperative agreement. So we then under -- undertook part of these studies, not all what we wanted to do, but part of them.
We've now finished that, we're getting ready to publish another series of papers, and we haven't published those. In our shop we don't talk about what we found until -- until it's published. Let me just tell you a quick synopsis of what we've done or sort of the main findings that we'll be publishing on without going into the findings.
First of all, we were referred a special forces colonel, and some of you probably know who this is, but he's well known in the military. This is a guy who was -- was a real top performer in the Gulf War. He received several awards for his service in the Persian Gulf war. Within months after the war he was unable to function. He was referred to me by a general officer in Washington who wondered if we could help, given what we had found. So we brought the fellow down. Turned out he had a -- an identical twin. Well, in medicine, as you know, in research an identical twin is gold, because an identical twin is the same DNA, and so ev -- all tests should give exactly the same results on the two people. So we -- so we got the twin to participate, we brought the twin and the -- and the special forces colonel down, brought them down six times to Dallas, and Ross Perot paid the full ticket, about a quarter of a million dollars, and we did every possible test that we could possibly think of, including tens of hours, 20 -- 25 hours in different MRI profusion scans, SPEC scans, brain scans, etcetera. We found brain lesions in this colonel, brain abnormalities in the colonel, and neurological abnormalities, abnormalities -- secondary abnormalities of the sympathetic and parasympathetic nervous system that we think account for the symptoms.
We then developed a protocol based on these findings, and we brought back our cases and controls that we did originally from the Seabees' group and put them through the most promising tests, and that cost about a quarter of a million dollars -- I'm sorry, about $2 and a half million. So you see, we put $2 and a half million into the testing of 50 people, rather than putting $500.00 into the testing of 40,000 people. You see the logic? The main things that we're exploring through this, we're -- we are really focusing on trying to find the newest brain imaging techniques that will show where the brain damage is in the brain.
The second major tenet is we're -- we've undertaken a huge array, a huge effort in genetic testing to see if we can find the genetic difference that explains why some people got sick from these chemicals, got a brain injury, and the person standing right next to them didn't. We suspect that there is a genetic difference, that some people are born with -- with high levels of these protective enzymes that chew up these organophosphate chemicals when they get into your blood, and other people have lower -- are just born with lower levels. And normally this difference doesn't bother you until you're exposed to these organophosphates, and then the group with low enzyme levels, they get brain damage because the stuff gets through the blood into the brain. Now, we have several that we're working on, that if those pan out they would be the very enzymes that protect you from Sarin, DEET, pesticides and so forth. If those are the ones that pan out, then that will be very strong evidence that will -- you see, will give us a clue from the other direction, it comes around the other direction, to look at the etiology or the cause of this illness. We've looked this way with risk factors, we're looking this way with genetic predispositions, and if those marry up, then we'll have a very, very strong scientific finding.
Now, in addition, we designed -- we spent a year-and-a-half with about half a million dollars of this money that we got from the Defense Department working with Research Triangle Institute, RTI. And you -- I'm sure you all know RTI, they're the most famous research organization that services the military and -- and other health-related issues. RTI -- We have basically turned our methodology over to RTI. They have put our questionnaires into computer-assisted telephone interview technique. They have drawn a random sample of the sick guy -- of the people who went over and a random sample of the people who didn't go over. Okay? They're going to now -- They are prepared and ready to do a telephone survey that exactly duplicates what we did before, but this time in a truly representative sample of the ones who went over and the ones who didn't go over. We -- We will then compare the -- the frequency or the rate of our syndromes in the deployed veteran group versus the rate in the non-deployed group. We hypothesize it will be ten times or more common in the deployed guys. If that's true, then our hypothesis is confirmed. Moreover, we'll then sub-sample the sick guys and the well guys in each of the groups, bring them to Dallas, do the genetic tests, do the brain tests, and thus corroborate what we're finding in the Seabees, the small little test sample, we'll corroborate it in the ultimate sample, which is a representative sample. You see, this is the -- the old CDC fire drill that no one else has bothered to do.
Now, we -- we presented this plan for this national survey, corroborating survey, replicating survey, we submitted this about a year ago to the defense department through the Fort Detrick procurement process, and it was turned down. We actually submitted two proposals, one to extend our case control study to get a larger number so it would be more significant, you know, the testing that we're doing on the Seabees, and another -- another proposal to -- to do the national survey. Well, guess what the reviews -- the peer reviews said: "Premature to do this national survey until you do a more extended clinical study to show your syndromes really work." And then the other group said: "Well, it's premature to do this extended clinical study until you do a national survey to show that this occurs in more than the Seabees." You get it? Well, it was turned down. It's now in the ash heap at this moment. Now, we're talking to the Defense Department, but right now there's no interest in funding this. Now, we need the Defense Department to collaborate in this because they have the computer files from which we need to generate the random sample. We generated the random samples, but we don't have the names of those samples and the addresses and phone numbers, and only they can give it to us, so we have to collaborate.
Let me tell you, if there's ever going to be a solution to this, it's going to come through science. It's going to come through a case control study that generates a hypothesis, that is publishable in a scientific journal, and then goes to a random sample for corroboration. Let me tell you, we are five years ahead of the rest of the field. Nobody has even started any of this but us, and we're on the ash heap.
We also, under funding from Ross Perot -- I'll just briefly mention -- we have undertaken a whole new set of animal studies. This time instead of hens that we did with Duke, which was the right way to start to show if this was plausible, we're now developing rat models, because in rats if we can -- and we have just successfully done this, we generated now a brain injury from these same chemicals that's not a whopping brain injury like the hens had, you know, that really incapacitates them, this is a subtle behavioral change in rats with no peripheral neuropathy, no massive brain or nerve injury. So we have an injury, chemical injury in rats now that looks very much clinically like the Gulf War syndrome. And we don't know if it is, but at least it's a model that's plausible. We're now starting behavioral and brain studies to try to see where in the brain the injury occurs to see if we can then get clues to match the brain imaging studies we're doing in the veterans.
And finally, treatment. Can brain damage be treated? Well, when we first found this -- this finding and showed Ross Perot, I said to him, I said, "Well, look this is brain damage." He said, "What's the treatment?" I said, "Well, it's brain damage, there isn't a treatment." He said, "Wrong answer. You haven't done anything. Until you find the treatment you haven't done anything."
So I, all disappointed, expecting approval, went back home to the -- to the school and talked with my colleagues and put the word around, you know, "Is there any treatment?" Well, it turns out once you ask that question, there's a -- there's a ton of things you can do. There are new drugs coming along all the time that treat brain damage. There are drugs for Alzheimer's disease, there are drugs for stroke, there are drugs for all kinds of brain injuries, and there are new ones coming out all the time. So as soon as we realized the error of our initial reflex, we started -- we asked Mr. Perot for some additional money, and he gave it to us and we started a clinical trial. This was over a year ago. We've -- We're testing five promising medicines, we've got almost through, they'll be through in June, we'll break the code, analyze the data and see if we've -- see if we've help any of these people. And we've already got a list of five more drugs that we're going to put on the end of this and start another one.
You know, look, let me just finish with this: At the bottom of my handout here I've got -- there are five objectives here to the national research effort. One is, what's the cause of all this illness we see in Gulf War veterans? The second, what's the nature of the injury? And we think it's a brain injury. What's the nature, where does it affect the brain? How does that cause the symptoms? Third, we need a diagnostic test. How do you diagnose it? We've got 150,000 people out there, maybe more, who want to be tested to see if they've got this. Well, we need a diagnostic test. We're well on the way to a diagnostic test if we're right. How do you treat it? What's the way of treating it? How do you make these guys well? Or at least how do you reduce the symptoms so they go along leading a better form of life than they've got now. And then how do we prevent it in the next -- in the next war? We've got to understand it now. This may be very similar to some of the injuries that occurred from Agent Orange. There are a lot of similarities chemical-wise, and this could be something similar.
Well, that's a summary of what I've got. I think if there's one thing I want to leave you with, and that is, we are 2 months away from having all our studies analyzed, final results. We -- We're getting ready to submit papers to journals right now, we'll be submitting some more over the summer. We'll be ready to approach the Defense Department again probably in the middle of the summer with a full deck of cards, ready to present them these findings in a confidential manner without going public before we're published in peer review journals. We need to get this survey going. Somebody's got to break the ice and go survey and see if we can corrob -- corroborate our hypothesis. This is a fairly low-cost deal for -- as surveys go because it's a telephone survey with a cheap follow up. So we might be needing your help when we go talk to the Defense Department, because there doesn't seem to be a lot of interest right now. Well, that's the end of my remarks. Questions?
GENERAL CISNEROS: Well, thank you, Dr. Haley. Yes, we do have some questions, and in view of the time went over, I'd like to try to keep the -- the answers as crisp as possible --
DR. HALEY: I will -- I will answer --
GENERAL CISNEROS: -- in order to -- in consideration of the --
DR. HALEY: Right. I'll answer succinctly.
GENERAL CISNEROS: So do we have a question? Admiral?
ADMIRAL STEINMAN: I have several questions I think you can answer very quickly. First is, is it your hypothesis that -- that chemical weapons on the battlefield is -- is required for each of the three syndrome patterns that you've identified?
DR. HALEY: Our main concern is what's the brain injury right now. Etiology, that first thing there, is not of great concern to us right now.
ADMIRAL STEINMAN: Okay. In your treatment protocol in your handout that you started in October '98, I assume you use appropriate -- there are appropriate controls, and that's --
DR. HALEY: Yes.
ADMIRAL STEINMAN: -- the blind study? Okay.
DR. HALEY: It's randomized, blind, etcetera.
ADMIRAL STEINMAN: Have you discussed your findings with U. K., United Kingdom, or Canadian forces --
DR. HALEY: Yes, I spoke with the Minister of State for Defense personally about last summer.
ADMIRAL STEINMAN: For UK.?
DR. HALEY: Yeah.
ADMIRAL STEINMAN: And Canada?
DR. HALEY: Not -- No one up there has called us.
ADMIRAL STEINMAN: Okay. They have a similar prevalence of -- of Gulf War injuries as we do.
DR. HALEY: Right. Right.
ADMIRAL STEINMAN: In your RTI questionnaire survey, are you also going to include a sample of non-Gulf War deployed vets?
DR. HALEY: Yes. We have a random sample of the 700 went over, a random sample of the 3 million who didn't go over.
ADMIRAL STEINMAN: No, I was asking non -- deployed vets but not to the Gulf. We had a bunch of vets who've gone to Bosnia and other places.
DR. HALEY: Oh. They -- They will -- Yeah, that's a very good question. We have not decided that yet. We've -- We are thinking about adding another stratum. If so, it would be a third stratum.
ADMIRAL STEINMAN: With Somalia and Bosnia. I mean, there's a lot of places that --
DR. HALEY: Yeah. This is something we'd like to negotiate with the Defense Department. Are they really interested? Mainly my -- that is not my interest. My interest is I want to know what's the difference between this group and this group. You know, there are a bunch of nuances we could do, and if the Defense Department is interested we could add stratum, but the key is this versus that.
ADMIRAL STEINMAN: Well, the nuance, of course, would be --
DR. HALEY: Yeah.
ADMIRAL STEINMAN: -- the deployment itself --
DR. HALEY: Sure.
ADMIRAL STEINMAN: -- has something to do with this.
DR. HALEY: Yeah.
ADMIRAL STEINMAN: And finally, would you be willing to come to D. C. to discuss -- further discuss your hypotheses and proposals with us and with members of health affairs and OSAGWI.
DR. HALEY: Be happy to any time.
ADMIRAL ZUMWALT: You mentioned four risk factors that were common to the sick, but you only gave us three.
DR. HALEY: Yeah. The fourth one, flea collars. As you know, a number of a people brought flee collars from home. These were pet tick and flea collars that have a pesticide in them. You look on the package cover, there's a skull and cross bones, says, "Do not get on your skin." The reason for that, they have mostly Dursban in them, which is known to produce this same kind of brain injury. Our syndrome I was highly associated with wearing flea collars.
GENERAL CISNEROS: Did they wear flea collars over there? I wasn't aware of that.
DR. HALEY: It was not authorized, and -- and it was discouraged by the military command, but people brought them, and they were underneath the uniforms so they couldn't see them, and so it was hard to police. But I think -- One thing it's important to point out, shortly after our results came out, the military command has -- has changed their -- their -- their doctrine for the use of Pyridostigmine. It's going to -- It's now still in the picture, but I think much more restricted indications. They've eliminated the high potency DEET insect repellant, they've really cracked down on the flea collars. They basically implemented things that if we are right, and, you know, we're -- we're not saying we're right yet, but if we're right, they've already, I think, covered this for the future, which is -- which is -- But -- But there's some other things we need to learn, like the genetic predispositions and other things that I think would be incredibly important in trying to protect our troops from chemical nerve gas in the future, which as you know we're going to see again.
DR. CAM: Yeah. I have a couple of things. My first question is, who keeps the code in your study? My second question is more of a comment. In -- In your reply to the letter to the editor by Jessica Wolfe & Associates in 1998, you had mentioned this: "Simultaneously psychiatrists conducting definitive structured interviews for PTSD in Veteran Affairs' medical centers were finding only rare cases of true PTSD but were not speaking out, presumably inhibited by the public policy." I would like you to elaborate a little bit on that.
And my third question is, in your future study, are you planning on assessing the role of cortisol (inaudible) as a result of the stress as a lot of people have mentioned?
DR. HALEY: Right.
DR. CAM: If you know what I'm talking about.
DR. HALEY: Yeah, this is -- Your -- Your first question, who holds the code. We have a doctor who's a pharmacologist and runs the clinical trial who holds the code.
The whole issue of post traumatic stress disorder, is this due to stress, does it have anything to do with the cortisol theory. First, I don't think there's any credibility at all to the stress theory. That was, I believe, a -- It was a natural thing that doctors jumped at after the war when they saw a bunch of people coming in with real troubling symptoms. They believed the symptoms, but they -- there was nothing wrong in the physical exam and nothing wrong in the laboratory, and they jumped and said this is post-traumatic-stress disorder, I guess. And that then proliferated, and everybody was saying PTSD or somatization disorder. Both of those are absolutely untenable diagnoses. The PTSD thing was built on a -- on a false premise, which I -- I published the journal -- an article in the American Journal of Epidemiology in which I addressed that, Is The Gulf War syndrome Due to Stress, the Evidence Reexamined. If you don't have copies, I can provide that to you. But basically there was a statistical error in 16 studies that were done right after the war by psychiatrists in the military and the VA in which they examined veterans with the Mississippi PTSD scale. It's a psychometric test to detect posttraumatic stress disorder. It's basically 35 questions, and the person answers "yes" or "no" to each -- or marks for each one, and they add them up, and if it's above a certain score you have PTSD. The problem with it is -- I don't know if -- Well, I'm not being succinct. The problem is the analysis of that was -- was completely misinterpreted. None of those showed posttraumatic stress disorder. It was a misinterpretation. So the whole stress argument was brought up for a wrong reason. So therefore, there's nothing to lead us to think that this is due to stress in any way. In all the rhetoric, from the Presidential Advisory Committee particularly, that would say, This has got to be stress and stress related disorder, that is -- there's absolutely no one -- not one shred of evidence that that has happened, could happen. And -- And certainly the cortisol theory, while true in rats, is -- is not known to be true in humans. This is a complete misadventure in my view.
And -- And about the psychiatrists, that was my own personal observation. I've spent a lot of time in Washington talking to the Veterans' Affairs Committee up there and other groups, talking to the psychiatrists who were talking about stress and asked them, "How many of you have really examined these people, performed what's called a structured clinical interview for DSM4 criteria for PTSD," and they all say, "Well, yeah, our guys have been doing it, but they don't really find much by that." Well, that's the standard. That's the gold -- the gold standard for making the diagnosis. The PTSD scales, the Mississippi PTSD scale is a screening test that does not make the diagnosis. You have to have a structured interview to make the diagnosis. When those were done there was almost no PTSD from the Gulf War. This was a misadventure. Well, that's all my time.
GENERAL CISNEROS: Thank you, Dr. Haley. We're now going to go to individual veteran comments. Again, you're -- like to keep it to 5 minutes each so that if there's any follow along questions. We'll start off with the first person who signed up, Mr. Karl Laine. You're welcome to come up and address the Board.