Research and Investigations on Gulf War Illnesses

[Arrow]

Examining the Status of Gulf War Research and Investigations on Gulf War Illnesses Tuesday, June 01, 2004 1:00 PM



Chairman of the Subcommittee on National Security, Emerging Threats, and International Relations, will convene an oversight hearing June 1 to assess the status of research on Gulf War illnesses and discuss General Accounting Office (GAO) findings regarding Persian Gulf War veterans? exposures to chemical warfare agents.

The hearing will convene Tuesday, June 1, 2004, 1:00 pm in room 2154 of the Rayburn Building in Washington, D.C.

"Low-level exposures to sarin may play a role in the illnesses and syndromes suffered by more than 125,000 American veterans of the first Gulf War," Shays said. "For those veterans, and for those fighting in toxic environments today, only an aggressive research agenda will produce the answers needed to protect or cure yesterday?s, today?s and tomorrow?s warriors."

Veterans from the United Kingdom have also suffered the range of illnesses and symptoms often called "Gulf War Syndrome." Lord Alfred Morris of Manchester, a former UK Minister of War Pensions, has been an active advocate for Gulf War veterans. As he did in January 2002, Lord Morris will join the Subcommittee in reviewing the status of research into Gulf War exposures and treatments.

Shays said, "Studies indicate our Coalition partners from the UK and elsewhere were also operating in the path of toxic plumes. We welcome Lord Morris? expertise as the Subcommittee examines the international research effort to diagnose and treat the health effects of battlefield exposures."

In recent years VA and DOD funding for Gulf War Illnesses research has decreased, despite the appointment of a new VA Research Advisory Committee. The GAO is expected to testify that the VA has not reassessed the extent to which the current portfolio has addressed key research questions. The last time VA did an assessment was in 2000, when only half of pending research studies were complete.

Committee on Government Reform

Subcommittee on National Security, Emerging Threats, and International Relations

"Examining the Status of Gulf War Research and Investigations on Gulf War Illnesses"

(June 1, 2004)

Witness List

PANEL ONE

Mr. Jim Bunker
Chairman, Veteran Information Network
Gulf War Veteran
Topeka, Kansas

Dr. Derek Hall
Gulf War Veteran
United Kingdom

Dr. Janet Heinrich
Director, Health Care-Public Health Issues
General Accounting Office

Dr. Keith Rhodes
Chief General Accounting Office Technologist
General Accounting Office

Mr. Jim Binns
Chairman
Research Advisory Committee on Gulf War Veterans Illnesses

Mr. Steve Robinson
Executive Director
National Gulf War Resource Center, Inc.

PANEL TWO

Dr. Jonathan B. Perlin
Acting Under Secretary for Health and Acting Chief Research and Development Officer
Department of Veterans Affairs

Accompanied by:

Dr. Mindy L. Aisen
Deputy Chief Research and Development Officer
Department of Veterans Affairs

Dr. Craig Hyams
Chief Consultant, Occupational and Environmental Health
Department of Veterans Affairs

Major General Lester Martinez-Lopez
Commanding General of U.S. Army Medical Research and Materiel Command
Fort Detrik, Maryland

Dr. Robert Haley
Professor of Internal Medicine
University of Texas Southwestern Medical Center

Dr. Rogene Henderson
Senior Scientist
Lovelace Respiratory Research Institute

Dr. Paul Greengard
Vincent Astor Professor and Head of Laboratory of Molecular and Cellular Neuroscience
The Rockefeller University
Nobel Laureate 2000

[Arrow]

SUBCOMMITTEE ON NATIONAL SECURITY, EMERGING THREATS, AND INTERNATIONAL RELATIONS

Christopher Shays, Connecticut Chairman

Room B-372 Rayburn Building Washington, D.C. 20515 Tel: 202 225-2548 Fax: 202 225-2382

May 26, 2004 MEMORANDUM To:

Members of the Subcommittee on National Security, Emerging Threats, and International Relations

From: Kristine K. McElroy

Subject:

Briefing Memorandum for the hearing, Examining the Status of Gulf War Research and Investigations on Gulf War Illnesses, scheduled for Tuesday, June 1, 2004, at 1 p.m. in Room 2154, Rayburn House Office Building.

PURPOSE OF THE HEARING The purpose of the hearing is to assess the status of research on Gulf War illnesses and to look at General Accounting Office (GAO) findings regarding Persian Gulf War veterans? exposures to chemical warfare agents.

HEARING ISSUES

1. What is the status of Gulf War Illnesses research and how can it be improved?

2. How have exposure estimates affected research findings regarding Gulf War Illnesses?

BACKGROUND

In 1990, the Persian Gulf War brought together a number of international Coalition forces in response to Iraq's invasion of Kuwait. Iraq was suspected of possessing weapons of mass destruction (WMD), including nuclear, radiological, biological and chemical (NBC) weapons.

Each nation in the Gulf War Coalition assessed the nature and extent of those threats and took a variety of defensive measures. Those included stockpiling and administering various drugs and vaccines, some of which were experimental.

Since the war's end in 1991, more than 125,000 U.S. veterans of the Gulf War have complained of illnesses. Typical complaints of Gulf War veterans are: flu-like symptoms, chronic fatigue, rashes, joint and muscle pain, headaches, memory loss, reproductive problems, depression, loss of concentration, and gastro-intestinal problems. Others suffer cancers, heart and lung problems, and amyotrophic lateral sclerosis (ALS) or Lou Gehrig's Disease. Many believe they are suffering chronic disabling conditions as a result of wartime exposures to one or more of 33 toxic agents known to be present in the Gulf War theater of operations.

Before, during and after the hostilities, U.S. troops were exposed to a variety of potentially hazardous substances. Potential exposures include chemical and biological warfare agents as well as pesticides, insect repellants, leaded diesel fuel, depleted uranium, oil well fires, infectious agents, the experimental drug pyridostigmine bromide (PB), and multiple vaccines including anthrax. Exposures to WMD, along with defense measures against such exposures, have been evaluated by some researchers as possible causes of thousands of illnesses among United States (U.S.) and United Kingdom (U.K.) forces.

Federal Research on Gulf War Illnesses The federal government has sponsored 240 research projects on Gulf War illnesses. As of 2003, about 80% of these research projects have been completed.

In 1994, federal research was coordinated under the Persian Gulf Veterans Coordinating Board (PGVCB) and was composed of the Secretaries of VA, Defense (DOD), and Health & Human Services (HS). The Research Working Group (RWG) of the PGVCB had primary responsibility for managing research into Gulf War illnesses. However in 2000, the PGVCB was subsumed within the Military Veterans Health Coordinating Board (MVHCB).

In 2002 the Deployment Health Work Group (DHWG) was established and the MVHCB was disbanded. In 2003 the DHWG established the Research Subcommittee to examine research related to the health of troops in all military deployments including the Gulf War.

(Attachment 1) The Deployment Health Working Group (DHWG) Research Subcommittee issued the 2002 Annual Report to Congress on Federally Sponsored Research on Gulf War Veterans? Illnesses on April 2004. According to the report, Federal Government funding for the direct cost of Gulf War research exceeded $227 million from FY94 through FY02. This total does not include indirect costs of conducting the research such as facility, administrative and operational costs since indirect costs can only be computed by facility and not by project. VA estimates the indirect costs were close to $70 million.

(Web Resource 1) The research reports are grouped according to ten focus areas: symptoms and general health status, brain and nervous system function, diagnosis, immune function, prevention, environmental toxicology, depleted uranium, chemical weapons, pyridostigmine bromide and interactions of exposures. (Web Resource 1) Amyotrophic Lateral Sclerosis (ALS) On December 10, 2001, the Department of Veterans Affairs announced preliminary results of a study which found, "veterans who served in Desert Shield-Desert Storm are nearly twice as likely as their non-deployed counterparts to develop amyotrophic lateral sclerosis (ALS), commonly called Lou Gehrig's Disease." (Attachment 2, p. 1)

ALS is a rare, chronic, and fatal disease of the nerves. Scientists do not know the cause of the illness, and there is no effective treatment for ALS. Only half of patients with ALS live more than three years. (Attachment 2, p. 3) 3

Research Advisory Committee The Research Advisory Committee on Gulf War Veterans? Illnesses (RACGWVI) was appointed by the Department of Veterans Affairs Secretary Anthony J. Principi on January 23, 2002, pursuant to Public law 105-368.

The mission of the Committee is to, "make recommendations to the Secretary of Veterans Affairs on government research relating to the health consequences of military service in the Southwest Asia theater of operations during the Persian Gulf War." (Web Resource 2)

The Committee is tasked with reviewing all relevant research, proposed federal research plans, initiatives, procurements and other activities in support of research projects on Gulf War-associated illnesses.

Members of the Committee consist of the general public, Persian Gulf War veterans, representatives of veterans and members of the medical and scientific community. The Committee is required to meet at least twice a year and to submit an annual report on the status and results of government research during the previous year. (Web Resource 2)

A June 25, 2002 Committee Interim report concluded Gulf War veterans "suffer from a pattern of health problems that significantly exceed those seen in comparable populations, beyond that which is explained by stress or psychiatric diagnoses, and different epidemiological studies consistently show 25-30% of the veterans who served in the Gulf are ill, over and above the control population chosen for each study." (Web Resource 2)

The Committee also concluded, "it is increasingly evident that at least one important category of illness in Gulf War veterans is neurological in character, according to recent scientific studies." (Web Resource 2) For example, Gulf War veterans are suffering from ALS at twice the expected rate. Studies have shown ill veterans have "elevated brain dopamine production," and have "low levels of an enzyme, paraoxonase, that is involved in breaking down organophosphate, and are more likely to have genotypes poor at metabolizing certain organophosphates, suggesting biochemical and genetic explanations for why some veterans become ill and others in the same location did not." (Web Resource 2) 4

The Committee report also concluded, "Many risk factors associated with Gulf War Illnesses are present today in Southwest Asia." (Web Resource 2) These include exposures to environmental toxins, low-level nerve agents, depleted uranium, oil fires, mustard gas, and stress." (Web Resource 2)

The Committee report made several recommendations including to use all available methods to identify and evaluate treatments that may hold promise for the unexplained illnesses experienced by Gulf War veterans, to enlist the expertise of specialists in neurobiology and neurological illness, to designate as a research priority the investigation of neurological mechanisms, and to increase funding to support these goals. (Web Resource 2)

Committee Report and Legislative Action The Presidential Advisory Committee on Gulf War Veterans' Illnesses (PAC) criticized the government's approach to research in a Special Report to the President in October 1997.

According to the report, there appeared to be an inadequate response to external peer-review, less than adequate regard for the importance of allocating scarce research dollars to the best designed studies, inattention to the need to communicate effectively with veteran participants, and a need for better management of the research portfolio. (Attachment 3, p. 10)

On November 7, 1997 the Committee on Government Reform & Oversight approved the Subcommittee report which included 18 findings and 18 recommendations (House Report 105-388. "Gulf War Veterans' Illnesses: VA and DoD continue to Resist Strong Evidence Linking Toxic Causes to Chronic Health Effects"). (Web Resources 3)

Among the findings and recommendations are several relating to research into the causes and treatments of Gulf War veterans' illnesses. (Attachment 4, pp. 5-7) Responding to persistent concerns about federal research and treatment programs on Gulf War veterans' illnesses, the Subcommittee report also called for legislative action.

In 1998, Congressman Shays and 213 bipartisan co-sponsors introduced The Persian Gulf War Veterans Health Act of 1998 (H.R. 4036). The bill would establish in law the presumption of service-connection for illnesses associated with exposure to toxins present in the war theatre.

The VA Secretary would be required to accept the findings of an independent scientific body as to the illnesses linked with actual and presumed toxic exposures. By establishing a rebuttable presumption of exposure, and the presumption of service-connection for exposure effects, the bill placed the burden of proof on the VA, not the sick veteran.

A similar bill, H.R. 4328, was included in the 1998 omnibus appropriations bill (under Title XVI, Division C, Sections 1601 & 1602), and enacted in October, Public Law 105-277. (Web Resources 4)

Plume Modeling For Chemical Exposures Plume modeling is used to recreate or predict the release and dispersion paths of hazardous materials and their effect on the health of the general population. "The methodology for modeling the release of an agent is a process that includes:

? A source characterization to describe the type and amount of agent released, and how rapidly it discharged; ? Data from global weather models to simulate global weather patterns;

? Regional weather models to simulate the weather in the vicinity of the suspected agent release, and

? Transport and dispersion models (often simply called dispersion models) to project the possible spread of the agent as a result of the simulated regional weather." (Web Resource 5)

At the end of Operation Desert Storm in 1991, US Army units were located in southeastern Iraq in an area that encompassed Khamisiyah (also known as Tall al Lahm Ammunition Storage Area). The army?s XVIII Airborne Corps conducted two large-scale demolition operations to destroy munitions and facilities around Khamisiyah. On March 4, 1991, soldiers destroyed 37 ammunition bunkers. Iraq later declared one of the bunkers, Bunker 73, had 2,160 chemical warfare-filled rockets. On March 10, 1991, Soldiers destroyed 40 additional ammunition bunkers and 45 warehouses. In an open-air location outside the Khamisiyah Ammunition Supply Point (ASP) (also known as "the Pit") soldiers destroyed 1,250 rockets, many of which the United Nations Special

Commission on Iraq (UNSCOM) later found contained chemical nerve agents sarin and cyclosarin. In 1996, the Central Intelligence Agency (CIA) developed computer modeling to simulate the possible releases of chemical warfare agents from several sites in Iraq.

However, the CIA only used a single model approach and the results showed the strengths and weaknesses of that model. On November 2, 1996, the DOD asked the Institute for Defense Analyses (IDA) to convene an independent panel of experts to evaluate previous modeling analyses. The panel recommended using several atmospheric models instead of relying on one model. (Web Resource 5)

The methodology behind Persian Gulf War modeling used local and global weather models and dispersions models. Weather models simulated the weather conditions in the area, and dispersion models simulated how chemical warfare agents may have moved in the atmosphere given the weather conditions.

The models used characteristics of the agent such as the amount of the agent, type of agent, location of release, and release rate along with local weather to predict the agent?s dispersal. The CIA, and reports by the United Nations Special Commission on Iraq provided source characterization for the modeling of Khamisiyah.

The dispersion models used to model Khamisiyah used the same weather inputs and source characterization; however they yielded different results due to different assumptions. To account for these differences, a composite of all the various models was created. The hazard projection graphics derived from the dispersion models were sent to the US Army Center for Health Promotion and Preventative Medicine (CHPPM). CHPPM used these graphics with data on US unit locations to create an exposure plot showing the areas and levels of possible exposure.

As a result of DOD modeling efforts, 100,752 veterans were identified based on the plume modeling as possibly being exposed to low levels of nerve agent. (Web Resource 5) Subcommittee Investigations The Subcommittee held a series of hearings on the "Status of Efforts To Identify Persian Gulf War Syndrome."

During a Subcommittee hearing on September 19, 1996, James J. Tuite, III, International Security Consultant and Director, Gulf War Research Foundation, testified, "U.S. soldiers were exposed to detectable levels of chemical warfare agent fallout from the aerial bombings of Iraqi chemical warfare agent research, production, and storage facilities by Coalition forces."

According to Mr. Tuite, "Archived meteorological data, including visible and infrared satellite imagery illustrates that the heat and smoke, and therefore the toxic debris, from these facilities traveled directly towards U.S. military personnel."1 On June 2, 2003, the Subcommittee held a hearing entitled, Following Toxic Clouds: Science and Assumptions in Plume Modeling.

At this hearing, the GAO provided a preliminary assessment of DOD plume modeling. GAO found, "DOD?s conclusion as to the extent of U.S. troops? exposure is highly questionable because DOD and CIA plume modeling results are not reliable. In general, modeling is never precise enough to draw definitive conclusions, and DOD did not have accurate information on source term (such as the quantity and purity-concentration of the agent) and meteorological conditions (such as the wind and weather patterns), essential to valid modeling." (Attachment 5, p. 1)

GAO also found, "DOD?s conclusion, based on the finding of epidemiological studies?that there was no significant difference between rates of illness for exposed versus not exposed troops?is not valid. In the epidemiological studies, the results of DOD?s flawed modeling served as a key criterion for determining the exposure classification-exposed versus not exposed to chemical agents-of the troops." (Attachment 5, p. 1)

GAO will present their final assessment of DOD modeling at the hearing, along with another recent examination of the status of Gulf War Illnesses research. Gulf War Veterans from the United Kingdom have also suffered from illnesses. Lord Alfred Morris of Manchester has been very active in these issues and participated in a January 24, 2002 Subcommittee Hearing entitled Gulf War Veterans? Illnesses: Health of Coalition Force. Lord Morris also invited Subcommittee Members to participate in meetings in London on Gulf War Veterans? illnesses. During these meetings Subcommittee members met Gulf War Veterans, parliamentarians and researchers from the United Kingdom. (Web Resource 6) 1 See Subcommittee files.

DISCUSSION OF HEARING ISSUES

1. What is the status of Gulf War Illnesses research and how can it be improved? There has been much progress in Gulf War Illnesses research. Recent studies have found a neurological element to Gulf War Illnesses. Studies have shown Gulf War veterans are suffering from ALS at twice the expected rate. These findings hold great promise for finding effective treatments for Gulf War illnesses. However, there are concerns regarding funding for research. In an October 30, 2002, VA News release, VA Deputy Secretary Dr. Leo S. Mackay Jr., announced the Department of Veterans Affairs planned to, "make available up to $20 million for research into Gulf War illnesses during fiscal year 2004, a figure twice the amount spent by VA in any previous year." (Attachment 6)

However, a June 2003 video transcript by Secretary of Veterans Affairs Anthony J. Principi stated, "we have doubled the funding available this year to VA investigators for research into Gulf War illnesses and other military deployments. These include large deployment to Bosnia and Kosovo, to Afghanistan, and most recently, Iraq, and smaller, recent deployment, such as to Panama, Haiti and Somalia." (Attachment 7, p. 1)

Thus, the news release was inaccurate and misleading, since it clearly stated $20 million would be set aside for Gulf War illnesses research, not for all military deployments as Secretary Principi later stated.

Currently, the VA has funded only one research project related to Gulf War illnesses research at a cost of $450,000 for FY 2004. (Attachment 8, p. 14) In recent years VA and DOD funding for Gulf War Illnesses research has decreased.

The GAO will testify at the hearing that VA has not reassessed the extent to which the research projects have addressed the 21 key research questions. From 1995 to 1996, the Research Working Group identified 19 major research questions related to Gulf War Veterans illnesses.

Two more questions were added later to create a total of 21 key research questions to serve as a guide for federal research on Gulf War illnesses. (Attachment 8, pp. 32-33) The last time VA did an assessment was in 2000, when the findings from only half of the research were available. (Attachment 8, p. 2)

The government has funded seven research projects dealing with cancer incidence among Gulf War veterans. However, GAO will testify there are several limitations which may affect research related to cancer incidence. For instance some cancers may take years to develop, and some research projects studying cancer incidence have not examined enough Gulf War veterans to reliably assess cancer incidence. Incomplete federal data on the health characteristics of Gulf War veterans may hamper research efforts. (Attachment 8, p. 2)

The GAO report also found the VA made it difficult for the Research Advisory Committee (RAC) to work effectively. The VA failed to provide RAC with complete or clear information regarding Gulf War Illness research and limited collaboration on research initiatives and program planning. (Attachment 8, p. 2)

The GAO will recommend the Secretary of VA conduct a reassessment of the Gulf War illnesses research strategy to determine whether the 21 key research question have been answered.

The GAO will also recommend the Secretary of VA appoint a liaison who is knowledgeable about Gulf War illnesses research is appointed to routinely share information with the RAC, and ensure the research offices of the VA collaborate with the RAC on Gulf War illnesses research program developmental activities. (Attachment 8, p. 2)

2. How have exposure estimates affected research findings regarding Gulf War Illnesses? The DOD has conducted 50 investigations since 1996 on hazardous exposures during the Gulf War. As of April 2003, all investigations were complete. (Attachment 8, p. 2)

Plume modeling done by DOD estimated about 100,000 veterans were exposed to chemical weapons. This exposure information has been used in epidemiological studies. However, according to the GAO, the plume modeling done by DOD and CIA is inaccurate and flawed. Since source data was inaccurate, exposure models patterns cannot be accurately shown. As a result, research study based on these models has flaws since those in

the "unexposed" study group may have been exposed as well, invalidating comparisons.

Some say combining insufficient source information and meteorological data with limited information on troop location can lead to an artificial determination of exposures. GAO will testify DOD epidemiological studies are not valid since they are relying on inaccurate plume modeling to determine what group has been exposed and what group has not been exposed. Since it is difficult to assess the true exposure estimate, GAO will recommend the Secretary of DOD and the Secretary of VA not use the plume-modeling data for future epidemiological studies, since VA and DOD cannot know from the flawed plume modeling who was and who was not exposed. (Attachment 9, p. 3)

Mr. Jim Bunker will testify about his experience in obtaining State funding for Gulf War Illnesses research in Kansas, and recommendations he has for improving Gulf War Illnesses research.

Dr. Derek Hall will testify about Gulf War Illnesses research in the United Kingdom. Dr. Janet Heinrich will testify about GAO findings and recommendations in the recent report entitled Federal Gulf War Illnesses Research Strategy Needs Reassessment.Dr. Keith Rhodes, Chief General Accounting Office Technologist will testify about GAO findings and recommendations in the recent report entitled Gulf War Illnesses: DOD Conclusions About U.S. Troops? Exposure Cannot Be Adequately Supported. Mr. Jim Binns will testify about the work of the Research Advisory Committee on Gulf War Veterans Illnesses. Mr. Steve Robinson will testify about recommendations he has for improving Gulf War Illnesses research.

Dr. Jonathan B. Perlin will testify about the role of the Department of Veterans Affairs in supporting Gulf War Illnesses research.

Dr. Robert Haley will testify about his research and findings regarding the incidence of Amyotrophic Lateral Sclerosis (ALS) in Gulf War Veterans.

Dr. Rogene Henderson will testify about her research and findings regarding low-level sarin exposures.

Dr. Paul Greengard will testify about his Noble Prize winning work in finding treatment for Parkinson?s disease and how he feels a treatment can be found for Gulf War Illnesses.

The Honorable Lord Morris of Manchester, Member of the House of Lords, will be extended the parliamentary privilege of sitting on the dais with the Members of the Subcommittee. (Attachment 10, p. 1)

ATTACHMENTS 1. "A Working Plan For Research On Persian Gulf Veterans? Illnesses." Persian Gulf Veterans Coordinating Board (November 1996).

2. "VA Links Gulf War, Lou Gehrig?s Disease," Washington Post, (December 11, 2001).

3. "Presidential Advisory Committee on Gulf War Veterans? Illnesses," Special Report to the President (October 1997).

4. Summary, Findings & Recommendations. Government Reform & Oversight Committee Report. "Gulf War Veterans' Illnesses: VA, DOD Continue to Resist Strong Evidence Linking Toxic Causes to Chronic Health Effects," November 7, 1997 (House Report 105-388).

5. Highlights of "Gulf War Illnesses Preliminary Assessment of DOD Plume Modeling for U.S. Troops? Exposure to Chemical Agents (GAO-03-833T), testimony before the House Subcommittee on National Security (June 2003).

6. Department of Veterans Affairs News Release entitled "VA Doubles Gulf War Research Funding," (October 30, 2002).

7. Transcript of June 2003 video presentation by Secretary of Veterans Affairs Anthony J. Principi.

8. GAO Draft report entitled, "Federal Gulf War Illnesses Research Strategy Needs Reassessment," GAO-04-767 (June 2004).

9. GAO Draft Report entitled "Gulf War Illnesses: DOD?s Conclusions About U.S. Troops? Exposure Cannot Be Adequately Supported." GAO-04-159 (May 2004)

10. Biography of Lord Alfred Morris of Manchester.

[Arrow]

SUBCOMMITTEE ON NATIONAL SECURITY, EMERGING THREATS, AND INTERNATIONAL RELATIONS Christopher Shays, Connecticut Chairman

Room B-372 Rayburn Building Washington, D.C. 20515 Tel: 202 225-2548 Fax: 202 225-2382 .

Statement of Rep. Christopher Shays

June 1, 2004

Last weekend, in dedicating the World War II monument and celebrating Memorial Day, we acknowledged our profound obligation to those of past generations who made noble sacrifice in the service of liberty.

That same duty to remember demands our focus today on another overdue national remembrance. The living warriors of this generation who fought in operations Desert Shield and Desert Storm need just one thing written in stone ? a sustained commitment to research and treatments for the mysterious maladies and syndromes triggered by battlefield exposures.

And they cannot wait sixty years for their deserved testimonial to become a reality.

This Subcommittee, with oversight purview of the Department of Veterans Affairs (VA) and the Department of Defense (DOD), today convenes our seventeenth hearing on Gulf War veterans? illnesses.

Over the last decade, we?ve followed the hard path traveled by sick Gulf War veterans as they bore the burdens of their physical illnesses and the mental anguish caused by official skepticism and intransigence.

It was their determination that overcame entrenched indifference and bureaucratic inertia. Their persistence, and a home video of chemical weapons munitions being blown up at Khamisiyah, eventually persuaded the Departments of Defense and VA that post-war illnesses are linked to wartime exposures. Page 1 of 2

Statement of Rep. Christopher Shays

June 1, 2004

Page 2 of 2
But characterizing the subtle linkage between low-level toxic assaults and varied chronic health consequences remains a dauntingly complex research challenge.

As we will hear in testimony today, efforts to map uncharted neurological pathways between sarin-induced brain damage and diverse manifestations of illness are made even more difficult by unreliable exposure data.

The dimensions of Gulf War syndromes may be obscured by epidemiological conclusions based on unreliable exposure estimates and plume models.

And, promising research hypotheses and treatment concepts still face institutional obstacles to federal support as both funding and momentum behind Gulf War illnesses research appear to be waning.

So we asked our witnesses to give us their assessment of the status and future direction of Gulf War research.

As in the past, we asked veterans to testify first. Their perspectives always inform and enrich our subsequent discussion, and we appreciate the patience and forbearance of our government witnesses in agreeing to sit on our second panel.

Just as the liberation of Kuwait was an international mission, the search for post-war causes and cures has been a coalition effort as well. Over the years, we have been fortunate to be able to form a close collaboration with our counterparts in the United Kingdom. Continuing that transatlantic partnership, we are joined today by the Rt. Hon. Lord Morris of Manchester. Lord Morris is a leading advocate for Gulf War veterans in Britain, and a strong voice behind the breakthrough research needed to solve the mysteries of exposure-related diseases. This is not the fist time Lord Morris has joined us. Two years ago he and his colleague from the House of Commons, Mr. Bruce George, added invaluable insight and focus to our discussion. So much so that their obvious depth of knowledge and rhetorical flair made some of us feel a little intimidated and tongue-tied. So when we invited him this year, we commoners asked if he would be just a bit less Lordly today and he graciously agreed. He is a valued colleague of ours, and a true friend to Gulf War veterans of all nations. Welcome Lord Morris. You honor the Subcommittee again with your presence and we look forward to your continued contributions to our work.

[Arrow]

Testimony of James A. Bunker

To the SUBCOMMITTEE ON NATIONAL SECURITY, EMERGING THREATS, AND INTERNATIONAL RELATIONS, Christopher Shays, Connecticut Chairman

June 1, 2004

Dear Committee Chair and members of the committee, on behalf of the Veterans Information Network (a grass roots organization of Kansas and Missouri Veterans) and myself, I would like to thank you for giving me time to address you about the issues of Gulf War illness and research problems.

First, let met take a moment to briefly provide background about my involvement and interest in Persian Gulf Illness.

I deployed to the Gulf War with the Fourth Battalion ? Fifth Field Artillery Regiment as a First Lieutenant, stationed at Fort Riley Kansas. While in the war zone, the Big Red One blew up a large Iraqi ammunition storage area. At the time of this demolition, I became ill. I was treated for all of the classic symptoms of nerve agent poisoning, including convulsions. Then, I was given the antidote for the nerve agent and medically evacuated.

Over time I completely lost the use of my arms and hands. I have recovered some use in them, although some numbness, weakness, and tingling continues.

The problems I have with my legs have subsequently been identified as a problem with my sciatic nerve and often require the use of crutches. Although I have had an abnormal EEG, it is not considered to be seizure activity.

Additionally, I deal with headaches and cognitive dysfunction during the day. All of these greatly limit my activities and contribute to my desire to ensure that this issue is addressed and a cure is found.

Returning home, I saw other troops getting sick and being forced out of the service, much the same way I was. No one seemed to care what was making us sick; they only wanted us out to meet a draw down level.

On 19 June 1992, I was discharged from the army. For a career soldier, a medical discharge is not an easy way to lose one?s life long dream, and with no hope of a job due to my illness, life was going to get even harder. At that time, I still could not use my arms and I was barely able to walk without the use of crutches.

The army told me the VA would help me; the VA said it was all in my head Within a short time, I received my service-connected disability rating from the VA.

I began contacting and working with other veterans to find out what happened to us. The first person I talked to was Vic Sylvester, out of Texas who introduced me to online groups whose mission was to find other veterans, uncover common illnesses, and relay information concerning doctors we could go to and any treatments that might help.

As a grass root group, we all worked to pass the first Gulf War Health Bill in November of 1994. At the time I worked with the other groups on the first self-help guide for gulf war veterans.

When they were completed, I bought over 300 of the self-help guides to give out in the state of Kansas. This resulted in many fellow gulf war veterans calling me to get understanding about their illnesses and advice with their VA claim for benefits.

My involvement gradually led me to my becoming the point of contact for media outlets In February of 2001, I put together the ?Project Honor? a daylong tribute held at the Kansas Capital honoring all those that have served. We ended the day with the reading of the names of those who served and died in the Gulf War theatre. Following this we played taps and gave a 21-gun salute.

I formed a group called Veterans Information Network to help get several things passed in Kansas to help our fellow veterans. The most important piece of legislation we worked on was the creation of the Kansas Persian Gulf War Health Initiative which created the advisory board and study of Kansas veterans which then produced a significant piece of research into Gulf War Illness. The study was done by Dr. Lea Steele and is best known as ?The Kansas Study.?

The Kansas study was the first to identify clear links between Gulf veterans' health problems and the time and places in which they served. Results suggest that the unexplained health problems may be due to multiple factors.

The study, conducted by telephone interview, compared the health of Kansas Gulf War Theatre veterans to non theatre veterans who served during the same period.

A scientific article describing the study results was published in the November 15, 2000, issue of The American Journal of Epidemiology.

The study found B types of symptoms connected with Gulf War service: neurological symptoms, pain symptoms, gastrointestinal problems, respiratory problems, problems associated with fatigue and sleep difficulties, and skin problems.

About a third of Gulf veterans affected overall, 34% of Kansas veterans who served in Desert Shield or Desert Storm had symptoms of Gulf War illness. The severity of these problems varied widely.

Some veterans had relatively mild symptoms; others were so ill they could no longer work. The study also found that veterans who did not serve in the Persian Gulf, but reported getting shots from the military during the war, may have some of the same health problems as Gulf War veterans. Gulf War illness symptoms were found in 12% of non-Gulf veterans who said they got vaccines during the war, compared to less than 4% of veterans who did not get vaccines.

The study is significant because it showed that a state could use 1/10 of 1% of the money that the VA spent on GWI and come up with answers that the VA or DOD never did regarding the true status of the health of Veterans within the state. This study made Kansas the leader when it came to Gulf War Illness research.

The findings in this study also showed that there are several issues that still need to be addressed with regard to the care and health of the troops. While the 1994 legislation covering undiagnosed illnesses facing Gulf War Veterans was significant and ground breaking at the time, the legislation is incomplete.

The reason I say that it is incomplete is because it does not address the illnesses that are diagnosed in veterans of the Gulf War at a statistically higher rate than in other veterans or controls.

The following are my recommendations based on the work done in Kansas:

1. Get the illnesses that are being diagnosed at a higher rate in gulf war veterans presumptive service connected for them. This is needed now because many of the veterans are having clams denied for many of these illnesses, even though research has shown a higher rate in PGW veterans.

We need your help to change PL103-446. The Secretary of Veterans Affair, two years ago, added ALS as presumption of service-connection for gulf war veterans. He did this with the rate of ALS being at 2 times the rate of non-gulf war veterans.

As you will see below, there are some illnesses here that are being seen in Gulf War Veterans either at the same rate or an even higher rate than the ALS. The Secretary of Veterans Affair can add them himself and that is one route we could take, but in this time of budget concerns, I feel that legislation is going to be the only effective method to address this in a meaningful way.

With most everyone looking at what is causing Gulf War Illness, it seems that they are over looking the high rates of illness that veterans are diagnosed with. Table 3 of the ?Kansas Study? that was printed in American Journal of Epidemiology (vol.152.no10, Nov. 2000) shows some of the illnesses and the rates they occur in gulf war veterans over non-gulf war vets.

The illnesses that we need to get presumption of service-connection for are: PGW* Non-PGW* Condition(s) (n=1 ,545) (n = 435) OR*,t No. %t No. %t Skin condition(s) (other than skin cancer) 299 21 26 6 3.83 Stomach or intestinal condition(s) 219 15 32 8 2.13 Depression 179 12 30 7 1.85 Arthritis 161 11 24 6 1.99 Migraine headaches 160 11 21 5 2.25 High cholesterol 155 11 36 9 1.24 Chronic fatigue syndrome 142 9 5 1 8.70 Bronchitis 138 10 19 5 2.61

High blood pressure 134 9 33 8 1.24 Allergies 119 10 23 7 1.41 Posttraumatic stress disorder 98 6 6 1 4.74 Asthma 63 4 9 2 2.08 Alcohol or drug dependence 43 3 8 2 1.47 Heart disease 37 2 7 2 1.56 Lung disease 37 2 2 <0.5 4.77 Thyroid condition 30 2 4 1 2.32 Fibromyalgia 24 2 2 <0.5 3.69 Skin cancer 23 2 7 2 1.17 Diabetes 21 1 5 1 1.22 Cancer (other than skin cancer) 18 1 4 1 1.21 Seizures 15 1 1 <0.5 4.17 As one can see, skin conditions is very high at 3.83 time the rate of non-deployed veterans, and the reliability of this study is high too; but there needs to be more work done to show the types of conditions that one is seeing nation wide, not just in Kansas.

Some of the illness, like bronchitis, asthma, and lung disease, are closely related and can lead to less productive lives for the veterans due to their service.

VA compensations is given to sick veterans for their loss of earning power. With so many illnesses continuing to show up in the veterans we need to work at getting the VA to compensate them.

Look closely at the full study provided to you by Dr. Steele. In the full study you will see we do not only need to get these illnesses on a list for presumptive service connection; but we also need to do more research into this area to positively identify nation wide trends in the illnesses of Gulf War Veterans.

2. Track known disease groupings within the veterans? populations in correlation with civilian entities to include death rates. One example of this would be Multiple Sclerosis. Because many of the recognized illnesses found in civilian populations have a higher incidence within the veterans? populations, DoD and the VA should be working with the civilian entities that work with persons who receive civilian diagnosis of these conditions due to the fact that many veterans do not use the VA system for their health care.

At the current time, the only health tracking being done is related to those who do use the VA for their health care, leaving many veterans uncounted. There are veterans who are aware of statistically higher incidents of degenerative neurological issues within the Gulf War Veterans community. These veterans feel the true numbers of veterans with these problems is underrepresented in the current illness counts due specifically to the fact that because many veterans are not service connected and do not use the VA for care, their numbers are not included in the illness reporting system as it stands now.

One such veteran is Julie Mock who can be reached at jmock@ngwrc.org One way to ensure that all affected veterans are counted would be to correlate social security numbers of veterans with applications for social security disability applications, as well as social security records on deaths.

Another way would be to make a concerted effort to contact organizations such as National Multiple Sclerosis Society, or American Heart Association to make sure that veterans who request help from these agencies or who apply for national registries are counted separately from their civilian counterparts in an effort to truly determine who is ill, and with what.

3. There needs to be a closer look at the birth defects in children of veterans more so at the female veterans. Studies conducted both inside and outside the VA and DOD have shown a higher number of birth defects in children born to the veterans of the gulf war. Further research should be conducted into the types and severity of these defects, with attention given to the incidence of neurological, behavioral, and learning deficits as well as just the physical abnormalities.

I am sure that Betty Mekdeci, executive director of the Association for Birth Defects Children will cover this area more thoroughly than I am. She came to the last National Gulf War Conference to talk about the birth defects.

4. Work to get all the data on the other NBC sites we blew up out and a new death rate table done using these sites too.

Being one that became sick right after we blew up an ammo stock- pile, I feel it is very important that the DoD openly show all the sites that we blew up that contributed in any way to the chemical gas and fallout that troops in the theater of operations were exposed to.

I have personally seen photos by Paul Lyons, president of Desert Storm Justice Foundation, Inc. that showed the 1st AD in an area filled with chemical munitions, yet the information about the demolition of those munitions remains classified, and is not part of the modeling done regarding potential exposure levels in theater.

The problem with this withholding or denial of exposure is that the troops cannot receive appropriate medical care for the long-term symptomology of this kind of exposure if they do not know they were exposed. Further, without the other chemical munitions demolitions being addressed, we have no clear picture or accurate data concerning the true rates of illnesses and deaths due to this kind of exposure, and we continue to perpetrate the same kind of injustice we have seen in the past.

I do believe that it is the job of the VA and DOD to work at finding out what is wrong and what will make the veterans better in an honest and systematic way; but repeatedly we have seen that it not the case. We have seen that with the veterans of WWII and the

A-bomb tests. We have seen it with the Viet Nam vets and Agent Orange. Only now are we learning about how our troops have been used as guinea pigs with things like Project SHAD. In all of these, our federal government should have acted to help the veterans, but, for whatever reason, it did not.

It takes projects like what we have done in the great State of Kansas to bring changes that will help our veterans.

5.Separate research funding from the entity responsible for providing care and compensation funds to the Veterans. It seems as though it takes having an independent entity to allot research funding based on the merits and potential findings of that research to handle the money before meaningful results and studies will be conducted such as the Kansas study and other independent research that has shown significantly different results than that of the VA and DoD studies. These independent studies have shown that we need to take the research funding away from the VA and let state or private researchers do the work. One entity that could potentially work as the entity responsible for funding independent research is the RAC. Because the RAC is in a unique position to hear about new and innovative studies from the researchers both within the DoD and VA system as well as from the civilian sector. The RAC has the potential ability to guide exploration into previously unaddressed areas of research into the illnesses of the Gulf War Veterans, while having a historical perspective of what research has already been done.

I suggest this in the hope that we would not continue to fund redundant studies, or studies simply designed to refute what has already been shown to be accurate. Essentially, the RAC would still work as it is now, but with the added power of being able to direct the spending the VA?s gulf war research money. Further, they would be overseeing the studies and would have access to the interim data, and have the power to withdraw funding or terminate the studies if the study is not following the protocol written in the proposal. By taking control of the research and funding for research away from the VA, one will reduce conflict of interest that is inherent in the current situation.

This conflict is clearly due to the need for the VA to both save money and limit costs to the government due to veterans claims for compensation and health care; while simultaneously being responsible for finding out if health problems exist due to service to this nation, and if the VA should compensate for them. While in the service, we are trained that the mission comes first. We were also trained to take care of our men to make sure the mission was done. That is why even now the DoD will be giving troops pretreatments, to help them if they are exposed to NBC agents on the battlefield.

There are some that will point to a 1999 study by the RAND Corporation and a 2000 report from a panel of experts convened by the Institute of Medicine, both of which concluded PB, could not be ruled out as causing Gulf War Syndrome.

This set of symptoms includes fatigue, cognitive problems, muscle pain and weakness, and sleep disturbances experienced by some Gulf War vets who served in Iraq in 1990-1991. Now that we are no longer in the service, the mission of the government is to make sure that veterans have the best treatment for anything that happens to them while serving our country. This treatment should not be denied or held up simply because of cost, or research that has not been done due to conflicts of interest.

6. Base future research on a model similar to the following in the hope of not only finding out what caused the veterans to be ill, but with concern for making the lives of the veterans better.

This is the model for phase two of the Kansas study.

The three major research components for this type of study is:

1. Evaluating Practical and Objective Clinical Markers for Illness Detection and Classification

2. Determining Veterans Progress Over Time

3. Identifying Treatments & Activities Associated with Improved Health These components are summarized below:

1. Evaluating Practical and Objective Clinical Markers for Illness Detection and Classification.

Background: There are currently no well-accepted, objective or practical tests available to diagnose and classify Gulf War Illness. Since this illness appears to actually be a family of syndromes, evaluating the value of a particular test depends upon properly classifying individuals when evaluating specific tests.

Based upon the current Kansas database, it is possible to identify individuals with different constellations of symptoms, who would be expected to react differently to different tests.

Methodology:

This study will assess whether biological, biochemical, and physiologic measures previously suggested to be associated with Gulf War illnesses are useful in distinguishing between groupings ill veterans and ill from healthy veterans. It will involve small multiple trials which utilize sub-sets of the existing database, initially drawing upon those Veterans most clearly falling into specific categories. It will emphasize only those measures that either use existing technology or technology that could be made readily available in a non-research clinical setting. Potential Benefits: Veterans who are suffering will stand an improved chance of being correctly diagnosed, receive assistance and potentially receive appropriate treatment when it is available.

Identified markers will allow both clinicians and researcher to better understand the nature of Gulf War illnesses, and guide them in developing and providing effective treatments. Objective biological markers lift the burden from those suffering Veterans who are still fighting the battle with those skeptics who do not recognize their suffering.

2. Determining Veterans Progress over Time Background:

Building on the foundation laid in earlier and current research, the Kansas Gulf War Veterans Project is in a unique position to find answers to outstanding questions about Gulf War-related conditions. This is possible both because of the large number of Kansas Gulf veterans for whom baseline data already exist and because of the reputation of the Kansas program for conducting credible research in an even-handed manner.

Data collected since 1998 by the Kansas Commission on Veterans Affairs on over 2,000 Kansas Veterans provided a unique snapshot of their health. It does not show progress over time.

Since this data has already revealed that there are sub-sets of illness within this group, following these Veterans over time could provide valuable insight into the course of illness for these sub-groups. It may help identify whether specific findings are associated with Veterans health improving, declining or remaining stable. Additional data, not determined in the 1998 study could also be obtained.

Methodology:

This study will utilize the entire database from the 1998 study. Data gathering will be similar to that utilized for the initial research, but further research questions will be added. Morality data on study participants will also be collected through appropriate means. It will continue to utilize sophisticated epidemiological analysis to identify associations and trends. If warranted by results from Research Component # 1(regarding markers and tests), it will attempt to correlate objective findings with prognosis. By identifying who gets better and who gets worse, it will serve as a basis for Research Component #3 (Identifying treatment that works). Potential Benefits: Determining for Veterans, their families and the Government what to expect over time Discovering whether certain groups of Veterans are getting better or worse as a guide to treatment and further research. Providing a background rate for potential spontaneous recovery to help identify when treatment has actually aided recovery Maintaining an invaluable research resource, the Kansas database, that will be a foundation for future research benefiting Veterans

3. Identifying Treatments & Activities Associated with Improved Health

Background:

Although both the Institute of Medicine and the Department of Veterans Affairs have attempted to issue treatment guidelines for Gulf War Syndrome, these have proved of minimum value clinically. Rather then being based upon treatments that have been demonstrated to work in this group of Veterans, these instead are a compendium of treatments for diseases that have some similarity of appearance but have not been subjected to testing in this group.

Anecdotally, there are sporadic reports of treatment attempts that are claimed to be effective in small groups of Veterans, but these have proven elusive to replicate in other groups of Veterans. Historically, it is worth noting that in other ?mystery diseases? (such as Legionnaire?s? Disease) the important breakthrough occurred not in an expensive laboratory, but in the hands of a single clinician who tried something that turned out to work. Currently, there is no established methodology or registry that could provide a clue as to whether a specific treatment, rendered outside the bounds of a clinical trial, might be of value. Furthermore, without a scheme for classifying the subset that a Veteran falls into, treatments that might work for one particular group would appear ineffective if tried on the entire population of sick Veterans.

Methodology:

The first phase of this research would be a component of Research Component #2 (Determining Progress over Time), correlating any changes in Veterans health status with both subgroup and any form of treatment. Intensive analysis and follow-up information gathering will be required regarding any treatment purported to work. This will not constitute a clinical trial in any form, but may provide information regarding potential therapies that could later undergo clinical trials.

Potential Benefits:

May identify potentially worthwhile treatment options that would otherwise have not been noticed. Provide a basis for future treatment trials. Make information about potential treatment efficacy available to Veterans, their physicians and researchers. Background on the Kansas Persian Gulf War Health Advisory Board The Kansas Persian Gulf War Health Advisory Board is an unpaid advisory group, appointed by the State of Kansas to provide recommendations regarding research, services and outreach to the Kansas Commission on Veterans Affairs. The nature of the research outlined here is complex, combining medical, epidemiological and laboratory research. It exceeds the capabilities of a single individual, department or institution to accomplish alone. Fortunately, within the State of Kansas there exist individuals who have cooperated and have made themselves available accomplish these goals. It is foreseen that, with the guidance of Kansas Persian Gulf War Health Advisory Board, this project can be accomplished as a joint venture involving multiple individuals and institutions. This research project shall rely upon the full cooperation and coordination with the Kansas Commission on Veterans Affairs. However, no portion of the research funding shall be used to support any activities of that organization, except for the direct costs of participation in research.

The time frame for this overall project is estimated to be 3 years from the onset of funding availability and appropriate institutional agreements. Work products of some individual components may become available earlier. Because of the potential clinical value of the findings and the benefit to Veterans, findings should be widely disseminated through peer-review journals and other available means.

The following individuals have indicated their willingness to provide their support and cooperation in this project: Lea Steele, PhD is an epidemiologist formerly employed by the Kansas Commission on Veterans Affairs. She is now a Senior Health Researcher with Kansas Health Institute in Topeka. Dr. Steele also serves as a member of the Veterans Administration Research Advisory Committee.

Beginning in 1997 Dr. Steele directed and conducted the research on Kansas Veterans, funded by the State without outside support, that conclusively demonstrated that; Many Kansas Persian Gulf Veterans are sick Their symptoms could be logically grouped into several syndromes These groupings could be associated with geographical location and time of service as well as exposure to suspected risk factors (such as military immunization programs). This research was published November 15, 2000 in the American Journal of Epidemiology {152(10):992-1002}.

This frequently cited research has spurred other research across the country. Dr. Steele is now a co-investigator in ongoing research at the Midwest Research Institute of Kansas City, Missouri looking at certain patterns and biologic markers in these Veterans. Other states are also interested in studying conducting similar studies of their own Veteran populations.

Frederick W. Oehme DVM, PhD is a research scientist at Kansas State University in Manhattan, where he chairs the Department of Toxicology and the Comparative Toxicology Laboratories at the College of Veterinary Medicine. Dr. Oehme is a member of the Kansas Persian Gulf War Health Advisory Board.

Beginning in 1994 Dr. Oehme directed and conducted research into the toxic synergism between Pyridostigmine Bromide (the nerve gas pill) and common insect repellents or insecticides used by our troops. This research, in an animal model, clearly demonstrated those toxic effects. His findings were published in 1996 in both the Fundamentals of Applied Toxicology {1996 Dec;34(2):201-22} and the Journal of Toxicology and Environmental Health. {1996 May;48(1):35-56}.

Irving A. Cohen, MD, MPH is a physician formerly with the Veterans Administration Medical Center in Topeka. He is currently retired and is assisting this effort as a volunteer. Dr. Cohen is a member of the Kansas Persian Gulf War Health Advisory Board.

Beginning in 1993, Dr. Cohen noticed that Persian Gulf Veterans were suffering physical and psychiatric symptoms unlike those suffered by Veterans of earlier conflicts. He discovered that they had been exposed to pyridostigmine bromide as well as simultaneously exposed to myriad other factors, including pesticides, immunizations, and suspected low-level nerve gas, all of which could combine to disrupt the regulation of acetylcholine, an important neurotransmitter within the human nervous system. He noted that syndromes of acetylcholine disruption were previously documented in separate exposures to low-level nerve gas as well as chronic insecticides. Genetic differences in the regulation of acetylcholine among individuals also had been documented in the medical literature. His warning and call for further evaluation in 1994 at the National Institute of Health Technology Assessment Workshop on Persian Gulf, is documented in the May 25,1994 Journal of the American Medical Association {271(20):1559-1561}.

Charles T. Hinshaw, Jr., MD is a physician formerly in practice as a pathologist and specialist in Environmental Medicine in Wichita. He is currently retired and is assisting this effort as a volunteer. Because of his experience treating patients with Multiple Chemical Sensitivity, he was sought out in 1994 by Veterans who noticed similarities between that syndrome and the symptoms some of them suffered from. In 1995, he proposed research into environmental medicine factors effecting exposed Veterans.

Conclusion: While in the service, I was trained that the mission came first. I was also trained to take care of our men to make sure the mission was done. Now that I and many like me are no longer in the service, and knowing that we were injured by our service, my personal mission is to ensure as many veterans as possible receive just and proper care and compensation for their injuries and illnesses. The mission of our government should the veteran and making sure they have the best treatment for anything that happened to them while answering the call of our country. The mission we have can be best accomplished by:

1. Getting the illnesses that are being diagnosed at a higher rate in gulf war veterans presumptive service connected for them.

2 Track known disease groupings within the veterans? populations in correlation with civilian entities to include death rates.

3.Taking a closer look at the birth defects in children of veterans more so at the female veterans.

4. Work to get all the data on the other NBC sites we blew up out and a new death rate table done using these sites too.

5. Separate research funding from the entity responsible for providing care and compensation funds to the Veterans.

6. Base future research on a model similar to phase two of the Kansas Study in the hope of not only finding out what caused the veterans to be ill, but with concern for making the lives of the veterans better.

Thank you, James A. Bunker

[Arrow]

Dr. DEREK HALL MB ChB FRCSEd MRCGP DRCOG PERSONAL STATEMENT:

I had a happy & healthy childhood, enduring the (then) almost universal infectious including "Whooping Cough", which has turned out to be an unexpected major influence in my adult life. In June 1972 I enlisted as an Officer Cadet in the Royal Air Force Medical Branch. I had never been of an athletic disposition but I was passed fit as A2G1Z1 ? the ?normal standard of fitness? beaten only by A1G1Z1 which was, and still is, reserved for extremely fit candidates for Service who are suitable for deployment as ?Special Services?, of which enough said. I was 5?11" tall, weight 180lbs, chest 38", waist 36", collar size 15.5", cap size 7.25, hand size 7.5 & shoe size 8 ? all in UK measurements & which I was to maintain without effort for 23 years?,

In January 1991 I was ordered to attend a medical parade at RAF Brize Norton for the singular reason that this airbase had been designated as an ?official? Vaccinations & Immunisations centre to "accelerate" the immunological status of personnel expected to be deployed to the impending GWI theatre of conflict. In the space of one morning I was ordered to submit to multiple vaccinations & immunisations, a mixture of active, passive, live & attenuated agents, including some classified as Secret. I knew for sound scientific reasons that this was totally wrong and I demanded to make representation to the Senior Medical Officer available on base.

After communicating my angst to his superiors, he informed me curtly that Headquarters considered advice was that ?it would be in my best interests to comply with the order, and would I kindly set an Officerly example to the Troops!? I left him in no doubt at all that I considered the combination of Pertussis (Whooping Cough) and Anthrax was particularly risky to adults in general and to me in particular ? I already had lifelong natural immunity to it?, I was further angered that only the Anthrax shot was recorded in my personal medical documents. Predictably, the Ministry of Defence claim that all my relevant documents from the time have become ?mislaid?. In the event, I wasn?t deployed to the Gulf but found myself in Gambia instead throughout the duration of the conflict.

6 weeks after the multiple shots, I awoke to find that I had lost central vision in both of my eyes. I had been stricken with bilateral Posterior Uveitis, an extremely rare condition which required treatment with high doses of steroids to suppress, over a period of several weeks. As the condition settled, my specialist had the unenviable task of telling me that I appeared to have developed a Malignant Melanoma in my only ?good-seeing? eye, treatment for which involved permanent loss of sight ? I opted for cautious long-term monitoring. Thankfully, the tumour has not yet proven to be malignant.

In late ?91 & throughout ?92 (as I discovered only 1 year ago!) comments were being made in my Annual Confidential Assessments that I was exhibiting signs of Paranoia. Strangely, this marked the beginning of my colleagues? studious indifference to the rapid decline in my health which didn?t prevent me from being posted overseas into an area where adequate medical treatment facilities were just not available to me.

In early ?93 I suffered a severe atypical pneumonia and in the convalescent phase developed an aggressive migratory polyarthritis which just would not respond to conventional treatment. Thereafter followed, in rapid sequence, altered bowel habit, painless frank haematuria (passing of blood in the water), multiple episodes of renal/ureteric colic, unresponsive (to treatment) iron-deficient anaemia (later diagnosed as the anaemia of chronic disease), combined hepato-renal failure (due to an impacted stone in my ureter) and still the Ministry of Defence refused to allow me access to adequate treatment &/or to repatriate me. It was as if I didn?t exist.

In a matter of months, I was reduced from a ?scratch? 10-pin bowler to a shambling wreck?, By 1996 I had left uniformed service, and by force majeur had to relinquish my profession of surgery. At this stage I could no longer climb or descend stairs, nor dress/undress myself without assistance. I re-located to become a Family Doctor again but my health continued to decline. Clinically, I became Acromegalic & Myxoedematous. The myxoedema responded well to treatment (as did my joints temporarily) but the growth in my skeleton is permanent.

I am now 250lbs with an 18? neck. My cap & glove size has increased, my shoe size is now 10.5, my chest 44? & my waist 42?. The last bone in the human body to complete ossification is the Clavicle and it should attain maximum size at the latest by age 25yrs. I was aged 43 when my skeletal growth started again and my Government continue to deny that this is so. In March 2000 I was obliged to cease work permanently ? I had severe secondary osteoarthritis.

In July 2002 I suffered a combined sub-arachnoid & sub-dural haemhorrage with associated multiple injuries, in circumstances which are yet to be adequately explained. Throughout all of this, I have felt that even my own colleagues have been in denial of what happened to me after the pre-GW1 ?shot? parade.

It took me until February 2004 to convince the authorities that I have disabilities attributable to service. 13 years later and they still seek to deny responsibility! As for me, all I have lost is my career & my health ? no amount of money can ever compensate me for that. Currently, after much insistence on my part, I have been assessed recently by a specialist & I am now awaiting the start of a course of chemotherapy in the vain hope that this will arrest the course of an illness which my elected representatives deny exists even to this day?,

[Arrow]

Testimony Before the Subcommittee on National Security, Emerging Threats, and International Relations, Committee on Government Reform, House of Representatives

GULF WAR ILLNESSES

Federal Research Efforts Have Waned, and Research

Findings Have Not Been Reassessed

Statement of Janet Heinrich

Director, Health Care-Public Health Issues

GAO-04-815T

Federal Research Efforts Have Waned,

and Research Findings Have Not Been Reassessed

The federal focus on Gulf War-specific research has waned, but VA has not yet analyzed the latest research findings to identify whether there were gaps in research or to identify promising areas for future research. As of September 2003, about 80 percent of the 240 federally funded medical research projects for Gulf War illnesses had been completed. In recent years, VA and DOD have decreased their expenditures on Gulf War illnesses research and have expanded the scope of their medical research programs to incorporate the long-term health effects of all hazardous deployments.

Interagency committees formed by VA to coordinate federal Gulf War illnesses research have evolved to reflect these changing priorities, but overtime these entities have been dissolved or have become inactive. In addition, VA has not reassessed the extent to which the collective findings of completed Gulf War illnesses research projects have addressed key research questions or whether the questions remain relevant. The only assessment of progress in answering these research questions was published in 2001, when findings from only about half of all funded Gulf War illnesses research were available.

Moreover, it did not identify whether there were gaps in existing Gulf War illnesses research or promising areas for future research. This lack of a comprehensive analysis of research findings leaves VA at greater risk of failing to answer unresolved questions about causes, course of development, and treatments for Gulf War illnesses.

RAC?s efforts to provide advice and make recommendations to the Secretary of VA on Gulf War illnesses research may have been hampered by VA senior administrators? poor information sharing and limited collaboration on research initiatives and program planning. For example, VA failed to inform RAC about its 2002 major research program announcement that included Gulf War illnesses research.

VA and RAC are exploring ways to improve information sharing and collaboration, including VA?s hiring of a senior scientist who would both guide VA?s Gulf War illnesses research and serve as the agency?s liaison for routine updates to the advisory committee.

However, most of these changes had not been finalized at the time of GAO?s Review.Mr. Chairman and Members of the Subcommittee:

I am pleased to be here today as you consider the current status of the federal government?s research into the health concerns of Gulf War veterans. In the years following the 1991 Persian Gulf War, approximately 80,000 veterans have reported various symptoms including fatigue, muscleand joint pains, headaches, memory loss, skin rash, diarrhea, and sleep disturbances. Scientists have agreed that many veterans have unexplained illnesses-commonly referred to as Gulf War illnesses-that are characterized by one or more symptoms that do not conform to a standard diagnosis. Gulf War veterans? reports of illnesses and possible exposures to several known and potential health hazards have prompted numerous federal research projects on the nature, extent, and treatment of Gulf War illnesses. Federal Gulf War illnesses research projects have been funded primarily by the Department of Veterans Affairs (VA), the Department of Defense (DOD), and the Department of Health and Human Services (HHS).

In 1993, the President named the Secretary of VA as the responsible party for coordinating research activities undertaken or funded by the executive branch of the federal government on the health consequences of service in the Gulf War. In 2002, a congressionally mandated federal advisory committee-the VA Research Advisory Committee on Gulf War Veterans? Illnesses (RAC)-was established to provide advice on federal Gulf War illnesses research needs and priorities to the Secretary of VA. The committee is made up of members of the general public, including non-VA researchers and veterans? advocates. My remarks will summarize our findings on the status of federal research on Gulf War illnesses and VA?s communication and collaboration with RAC. My statement is based on our report entitled Department of Veterans

Affairs: Federal Gulf War Illnesses Research Strategy Needs

Reassessment (GAO-04-767), which will be issued today. The report also includes a description of the status of DOD?s investigations on potential exposures of service members and veterans to health hazards, such as chemical and biological agents, and efforts that have been made by VA and DOD to monitor cancer incidence among Gulf War veterans. Our findings are based on interviews with senior officials within VA and DOD and senior managers within each agency?s relevant research offices.

We analyzed pertinent agency documents, including annual reports to congressional committees describing research priorities, ongoing and completed projects, and agency funding. Additionally, we interviewed RAC officials, attended a RAC meeting, and reviewed RAC reports and recommendations.

We conducted our work from September 2003 through May 2004 in accordance with generally accepted government auditing standards.

In summary, the federal focus on Gulf War-specific research has waned, and VA-the agency with lead responsibility for coordination of Gulf War illnesses issues-has not yet analyzed the latest research findings to identify whether there were gaps in research or to identify promising areas for future research. As of September 2003, about 80 percent of the 240 federally funded medical research projects for Gulf War illnesses had been completed. In recent years, VA and DOD have decreased their expenditures on research specifically for Gulf War illnesses and have expanded the scope of their medical research programs to incorporate the long-term health effects of all hazardous deployments.

Interagency committees formed by VA to coordinate federal Gulf War illnesses research evolved to reflect these changing priorities, but over time these entities have been dissolved or have become inactive. In addition, VA has not reassessed the extent to which the collective findings of completed Gulf War Illnesses research projects have addressed key research questions or whether the questions remain relevant. The only assessment of progress in answering these research questions was published in 2001, when findings from only about half of all federally funded Gulf War illnesses research were available. Moreover, the summary did not identify whether there were gaps in existing Gulf War illnesses research or promising areas for future research. The lack of a Comprehensive analysis leaves VA at greater risk of failing to answer unresolved questions about causes, course of development, and treatments for Gulf War illnesses.



RAC?s efforts to provide advice and make recommendations on Gulf War illnesses research may have been hampered by VA senior administrators? incomplete or unclear information sharing and limited collaboration on Gulf War illnesses research initiatives and program planning. For example, VA failed to inform RAC about its 2002 major research program announcement that included Gulf War illnesses research. However, VA and RAC are exploring ways to improve information sharing, including VA?s hiring of a senior scientist who would guide VA?s Gulf War illnesses research and serve as the agency?s liaison for routine updates to RAC. However, most of these changes had not been finalized at the time of GAO?s review.

Although about 700,000 U.S. military personnel were deployed to the Gulf War in the early 1990s, casualties were relatively light compared with those in previous major conflicts. Some veterans began reporting health problems shortly after the war that they believed might be due to their participation in the conflict. VA, DOD, HHS, and other federal agencies initiated research and investigations into these health concerns and the consequences of possible hazardous exposures.

VA is the coordinator for all federal activities on the health consequences of service in the Gulf War. These activities include ensuring that the findings of all federal Gulf War illnesses research are made available to the public and that federal agencies coordinate outreach to Gulf War veterans in order to provide information on potential health risks from service in the Gulf War and corresponding services or benefits. The Secretary of VA is required to submit an annual report on the results, status, and priorities of federal research activities related to the health consequences of military service in the Gulf War to the Senate and House Veterans? Affairs Committees. VA has provided these reports to Congress since 1995.

In May 2004, VA issued its annual report for 2002.VA has carried out its coordinating role through the auspices of interagency committees, which have changed over time in concert with federal research priorities and needs. Specifically, the mission of these interagency committees has evolved to include coordination for research on all hazardous deployments, including but not limited to the Gulf War.

Federal research efforts for Gulf War illnesses have been guided by questions established by the interagency Research Working Group (RWG), which was initially established under the Persian Gulf Veterans Coordinating Board (PGVCB) to coordinate federal research efforts.

Between 1995 and 1996, the RWG identified 19 major research questions related to illnesses in Gulf War veterans. In 1996, the group added 2 more questions regarding cancer risk and mortality rates to create a set of 21 key research questions that have served as an overarching strategy in guiding federal research for Gulf War illnesses.

The 21 research questions cover the extent of various health problems, exposures among the veteran population, and the difference in health problems between Gulf War veterans and control populations. In 1998, the RWG expanded federal Gulf War illnesses research priorities to include treatment, longitudinal follow-up of illnesses, disease prevention, and improved hazard assessment; however, no new research questions were added to the list of 21 key questions. With regard to veterans? health status, the research questions cover the prevalence among veterans and control populations of? symptoms,? symptom complexes,? illnesses,? altered immune function or host defense,? birth defects,? reproductive problems,? sexual dysfunction,? cancer,? pulmonary symptoms,? neuropsychological or neurological deficits,? psychological symptoms or diagnoses, and? mortality.

With regard to exposure, the research questions cover? Leishmania tropica (a type of parasite),? petroleum,? petroleum combustion products,? specific occupational/environmental hazards (such as vaccines and

depleted uranium),? chemical agents,? pyridostigmine bromide (given to troops as a defense against nerve

agents), and? psychophysiological stressors (such as exposure to extremes of human

suffering).

In 2002, VA established RAC to provide advice to the Secretary of VA on proposed research relating to the health consequences of military service in the Gulf War.

2 RAC, which is composed of members of the general public, including non-VA researchers and veterans? advocates, was tasked to assist VA in its research planning by exploring the entire body of Gulf War illnesses research, identifying gaps in the research, and proposing potential areas of future research.

VA provides an annual budget of about $400,000 for RAC, which provides salaries for two full-time and one parttime employee and supports committee operating costs. RAC?s employees include a scientific director and support staff who review published scientific literature and federal research updates and collect information from scientists conducting relevant research. RAC?s staff provide research summaries for discussion and analysis to the advisory committee through monthly written reports and at regularly scheduled meetings. RAC holds public meetings several times a year at which scientists present published and unpublished findings from Gulf War illnesses research. In 2002, RAC published a report with recommendations to the Secretary of VA. It expects to publish another report soon.As of September 2003, about 80 percent of the 240 federally funded research projects on Gulf War illnesses have been completed. Additionally, funding for Gulf War-specific research has decreased, federal research priorities have been expanded to incorporate the long-term health effects of all hazardous deployments, and interagency coordination of Gulf War illnesses research has diminished. Despite this shift in effort, VA has not collectively reassessed the research findings to determine whether the 21 key research questions have been answered or to identify the most promising directions for future federal research in this area.

[Arrow]

Since this report is orignially done in pdf file I ambringing it over to the site inRTFso that those of you that have not downloadedthe software Adobe reader which allows you to read pdf filesor don't know how to use it can easilyread the files.

I will put a link up to the original site when I'm finished posting as there are some graphs and foot notes that Ihad to redact for brevity.

I know this is a lot of material. It is notfor the casual reader but for those who have had their life changed forever. It is for families that have huge questions and no answers. This material may help you immensely in the fight you face. That is my hope. Information is power. I can't sit at the computer for long periods of time without paying for it physically. It takes a little time for me to reformat some of these files as I am working only with wordpad but I will get them to you as I am able.

Arrow>>>>>>>>>

[Arrow]

Since 1991, 240 federally funded research projects have been initiated by VA, DOD, and HHS to address the health concerns of individuals who served in the Gulf War. As of September 2003, 194 of the 240 federal Gulf War illnesses research projects (81 percent) had been completed; another 46 projects (19 percent) were ongoing.

From 1994 to 2003, VA, DOD, and HHS collectively spent a total of $247 million on Gulf War illnesses research. DOD has provided the most funding for Gulf War illnesses research, funding about 74 percent of all federal Gulf War illnesses research within this time frame.

After fiscal year 2000, overall funding for Gulf War illnesses research decreased. Fiscal year 2003 research funding was about $20 million less than funding provided in fiscal year 2000. This overall decrease in federal funding was paralleled by a change in federal research priorities, which expanded to include all hazardous deployments and shifted away from a specific focus on Gulf War illnesses.

VA officials said that although Gulf War illnesses research continues, the agency is expanding the scope of its research to include the potential long term health effects in troops who served in hazardous deployments other than the Gulf War. In October 2002, VA announced plans to commit up to $20 million for research into Gulf War illnesses and the health effects of other military deployments. Also in October 2002, VA issued a program announcement for research on the long-term health effects in veterans who served in the Gulf War or in other hazardous deployments, such as Afghanistan and Bosnia/Kosovo.5 As of April 2004, one new Gulf War illnesses research project, for $450,000, was funded under this program announcement.

Although DOD has historically provided the majority of funding for Gulf War illnesses research, DOD officials stated that their agency currently has no plans to continue funding new Gulf War illnesses research projects.

Correspondingly, DOD has not funded any new Gulf War illnesses research in fiscal year 2004, except as reflected in modest supplements to complete existing projects and a new award pending for research using funding from a specific appropriation. DOD also did not include Gulf War illnesses research funding in its budget proposals for fiscal years 2005 and 2006. DOD officials stated that because the agency is primarily focused on the needs of the active duty soldier, its interest in funding Gulf War illnesses research was highest when a large number of Gulf War veterans remained on active duty after the war-some of whom might develop unexplained symptoms and syndromes that could affect their active duty status. In addition, since 2000, DOD?s focus has shifted from research solely on Gulf War illnesses to research on medical issues of active duty troops in current or future military deployments. For example, in 2000, VA and DOD collaborated to develop the Millennium Cohort study, which is a prospective study evaluating the health of both deployed and nondeployed military personnel throughout their military careers and after leaving military service. The study began in October 2000 and was awarded $5.25 million through fiscal year 2002, with another $3 million in funding estimated for fiscal year 2003.

VA?s coordination of federal Gulf War illnesses research has gradually lapsed. Starting in 1993, VA carried out its responsibility for coordinating all Gulf War health-related activities, including research, through interagency committees, which evolved over time to reflect changing needs and priorities. In 2000, interagency coordination of Gulf War illnesses research was subsumed under the broader effort of coordination for research on all hazardous deployments. Consequently,Gulf War illnesses research was no longer a primary focus. The most recent interagency research subcommittee, which is under the Deployment Health Working Group (DHWG), has not met since August2003, and as of April 2004, no additional meetings had been planned.

Additionally, VA has not reassessed the extent to which the collective findings of completed Gulf War Illnesses research projects have addressed the 21 key research questions developed by the RWG. The only assessment of progress in answering these research questions was published in 2001, when findings from only about half of all funded Gulf War illnesses research were available. Moreover, the summary did not identify whether there were gaps in existing Gulf War illnesses research or promising areas for future research. No reassessment of these research questions has been undertaken to determine whether they remain valid, even though about 80 percent of federally funded Gulf War illnesses research projects now have been completed. In 2000, we reported thatwithout such an assessment, many underlying questions about causes, course of development, and treatments for Gulf War illnesses may remain unanswered.

RAC?s efforts to provide advice and make recommendations on Gulf War illnesses research may have been impeded by VA?s limited sharing of information on research initiatives and program planning as well as VA?s limited collaboration with the committee. However, VA and RAC are exploring ways to improve information sharing, including VA?s hiring of a senior scientist who would both guide the agency?s Gulf War illnesses research and serve as the agency?s liaison to provide routine updates to RAC. VA and RAC are also proposing changes to improve collaboration, including possible commitments from VA to seek input from RAC when developing research program announcements. At the time of our review, most of these proposed changes were in the planning stages.

According to RAC officials, VA senior administrators? poor information sharing and limited collaboration with the committee about Gulf War illnesses research initiatives and program planning may have hindered RAC?s ability to achieve its mission of providing research advice to the Secretary of VA. RAC is required by its charter to provide advice and make recommendations to the Secretary of VA on proposed research studies, research plans, and research strategies relating to the health consequences of service during the Gulf War. RAC?s chairman and scientific director said that the recommendations and reports that the advisory committee provides to the Secretary of VA are based on its review of research projects and published and unpublished research findings related to Gulf War illnesses.

Although RAC and VA established official channels of communication, VA did not always provide RAC with important information related to Gulf War illnesses research initiatives and program planning. In 2002, VA designated a liaison to work with RAC?s liaison in order to facilitate the transfer of information to the advisory committee about the agency?s Gulf War illnesses research strategies and studies. However, RAC officials stated that most communication occurred at their request; that is, the VA liaison and other VA staff were generally responsive to requests but did not establish mechanisms to ensure that essential information about research program announcements or initiatives was automatically provided to the advisory committee. For example, according to RAC officials, VA?s liaison did not inform RAC that VA?s Office of Research and Development was preparing a research program announcement until it was published in October 2002.

Consequently, RAC officials said that they did not have an opportunity to carry out the committee?s responsibility of providing advice and making recommendations regarding research strategies and plans. In another instance, RAC officials stated that VA did not notify advisory committee members that the Longitudinal Health Study of Gulf War Era Veterans-a study designed to address possible long-term health consequences of service in the Gulf War-had been developed and that the study?s survey was about to be sent to study participants.

RAC officials expressed concern that VA did not inform the advisory committee about the survey even after the plans for it were made available for public comment. Information sharing about these types of issues is common practice among advisory committees of the National Institutes of Health (NIH), which has more federal advisory committees than any other executive branch agency For example, a senior official within NIH?s Office of Federal Advisory Committee Policy said that it is standard practice for NIH advisory committees to participate closely in the development of research program announcements.

In addition, NIH?s advisory committee members are routinely asked to make recommendations regarding both research concepts and priorities for research projects, and are kept up-to-date about the course of ongoing research projects.

In recognition of RAC?s concerns, VA is proposing several actions to improve information sharing, including VA?s hiring of a senior scientist to lead its Gulf War illnesses research and improving formal channels of communication. In addition, VA and RAC are exploring methods to improve collaboration. These would include possible commitments from VA to seek input from RAC when developing research program announcements and to include RAC members in a portion of the selection process for funding Gulf War illnesses research projects. As of April 2004, most of the proposed changes were in the planning stages.

Since the February 2004 RAC meeting, VA and RAC officials said they have had multiple meetings and phone conversations and have corresponded via e-mail in an attempt to improve communication and collaboration. VA officials said they have already instituted efforts to hire a senior scientist to guide the agency?s Gulf War illnesses research efforts and to act as liaison to RAC. According to VA officials, this official will be required to formally contact RAC officials weekly, with informal communications on an as-needed basis. In addition, this official will be responsible for providing periodic information on the latest publications or projects related to Gulf War illnesses research.

In an effort to facilitate collaboration with RAC, VA has proposed involving RAC members in developing VA program announcements designed to solicit research proposals, both specifically regarding Gulf War illnesses and in related areas of interest, such as general research into unexplained illnesses. RAC officials stated that throughout March and April 2004, they worked with VA officials to jointly develop a new research program announcement for Gulf War illnesses. In addition, VA has proposed that RAC will be able to recommend scientists for inclusion in the scientific merit review panels. VA also plans to involve RAC in review of a project?s relevancy to Gulf War illnesses research goals and priorities after the research projects undergo scientific merit review.

This could facilitate RAC?s ability to provide recommendations to VA regarding the projects that the advisory committee has judged are relevant to the Gulf War illnesses research plan.

Although about 80 percent of federally funded Gulf War illnesses research projects have been completed, little effort has been made to assess progress in answering the 21 key research questions or to identify the direction of future research in this area. Additionally, in light of decreasing federal funds and expanding federal research priorities, research specific to Gulf War illnesses is waning. Without a comprehensive reassessment of Gulf War illnesses research, underlying questions about the unexplained illnesses suffered by Gulf War veterans may remain unanswered.

Since RAC?s establishment in January 2002, its efforts to provide the Secretary of VA with advice and recommendations may have been hampered by VA?s incomplete disclosure of Gulf War illnesses research activities. By limiting information sharing with RAC, VA will not fully realize the assistance that the scientists and veterans? advocates who serve on the RAC could provide in developing effective policies and guidance for Gulf War illnesses research. VA and RAC are exploring new approaches to improve information sharing and collaboration. If these approaches are implemented, RAC?s ability to play a pivotal role in helping VA reassess the future direction of Gulf War illnesses research may be enhanced. However, at the time of our review most of these changes had not been formalized.

[Arrow]

National Gulf War Resource Center

Presented by Steve Robinson Executive Director Before the Subcommittee on National Security, Emerging Threats, And International Relations Regarding Examining the Status of Gulf War Research and Investigations on Gulf War Illnesses June 1, 2004 1

Mr. Chairman, On behalf of the National Gulf War Resource Center (NGWRC), I want to thank the Chairman and other distinguished members for affording us the opportunity to testify before you here today. Too many years have passed for our Government to not find effective treatments for veterans suffering from Gulf War Illnesses.

As you know, the battle was first waged in the court of public opinion based on Department of Defense (DoD) and in some cases, Department of Veterans Affairs (VA) spin.

Today, we can report that science is unraveling the mystery surrounding Gulf War Illnesses because there is a political will to look for answers. Nothing that happened to Gulf War veterans in 1991 should be a mystery in anyone?s mind based on science produced today.

However, there are still researchers and doctors in DoD and the VA healthcare system that refuse to read, recite and promote, the new science or new committees formed to address this issue. This continued effort by a few bad people who hold key positions is the reason we are just now looking into treatment modalities for ill veterans. The corruptness and nepotism of these few players needs to be addressed for the future of all veterans in the DoD and VA Healthcare system.

Mr. Chairman, I believe you will agree with me when I say we need a "Manhattan Project-like" effort to understand the consequences of the modern battlefield. If we can find the political and scientific will to place a rover on Mars then we can certainly spend the required capitol to understand, find and deliver effective treatments for exposures. The reason this effort is so necessary is because you, this committee, your state, and our America will face these same type exposures, if predictions about terrorist activities and intent prove to be true in the future. It?s not enough to hold hearings on this issue to expose the flaws in the system. The time has come for accountability and focused determination.

Where needed, Congress must pass laws mandating research and treatment efforts. When discovered, Congress must punish those who deliberately lean away from the veteran or those who purposely manipulate and inhibit science based on old theories that have long since been found to be untrue. We call on this committee to take bold steps and we hope our testimony will provide insight and direction for the road ahead. 2What we have now

DoD:

For all intents and purposes, the DoD is not conducting research nor investigating anything related to Gulf War Illness. The Department continues to fund things like Cognitive Behavioral Therapy and Exercise Behavioral Therapy. Both of these programs are fine for addressing depression and helping soldiers cope with illness, but do nothing to address the illness itself. DoD medical research continues to press on with the "Stress Theory" model of medical care.

Let me cite a few examples. Recently, soldiers who have returned from Iraq have had their medical concerns classified as "In your head hysteria" when they asked for screening for dangerous substances like Depleted Uranium and Lariam Toxicity. Several days ago, a sarin filled 155 shell exposed two soldiers to low levels of sarin. In all the cases above, the Department downplayed the exposures even in the face of scientific data that is clearly irrefutable. Something must be done to get away from the "Risk Communication "model that downplays exposures and give the veterans the information they need to address their health concerns.

The soldiers recently exposed to sarin in Iraq should have been given:

1. Blood tests (including PON concentrations and activity levels & genotype; AChE levels and variants), blood archiving, and formal monitoring. Monitoring should include symptom testing to include, cognitive, muscle strength and fatigability. Testing should be repeated several weeks after the exposure. Then a long-term plan with a 5 to10 year follow-up so that subjects can later be compared to their earlier performance. Identifying a control group of comparable age and sex to follow would also be desirable as to assess whether "age-related" losses are more rapid in the exposed group.

2. Exposed persons should be informed of the risk factors to include signs and symptoms to watch out for.

3. The soldiers should be given autonomic tests that have been found effective in ill GWV?s, such as forearm erythema with methacholine challenge, visceral and cutaneous sensitivity.

4. Sample soldiers for how long traces of sarin or potential toxic degradation products remain on hair; hair is a high surface area item that can serve as a depot following exposures, and hair or hair products often are good substrates for holding lipophilic substances (which could then engender secondary low-level exposure through direct contact or repeated re-deposition. These soldiers should also be eligible for the Purple Heart. A chemical weapons exposure at the hands of the enemy is no different than an IED attack or a vehicle ambush.

Undersecretary of Defense for Health Affairs, William Winkenwerder, is responsible for the lack of pre-deployment screening prior to this war; he is also responsible for all health affairs policies that mitigate exposures through public relations tactics used by the Deployment Health Support Directorate. Under Doctor Winkenwerder?s leadership, the Army failed to pre-screen thousands of deploying soldiers headed to Operation Iraqi Freedom and continues to put future veterans at risk by not telling the truth about the dangers of a wide variety of exposures.

Shamefully, the same people who denied the existence of illnesses in Gulf War veterans are now responsible for monitoring the health outcomes of Operation Iraqi Freedom and Enduring Freedom veterans. The single most egregious problem related to research and DoD is the lack of population identification. The DoD is not providing researchers, the VA or soldiers, unique information identifying where soldiers served. Simply stating that a soldier served in Southwest Asia is not the kind of data the IOM or the VA will need to conduct epidemiological studies. VA: Chairman Binns will discuss the lack of funding for VA Gulf War related research and treatments. He will detail lost opportunities and the VA Secretaries response once he found out that his wishes were ignored by those beneath him.

We however, are not surprised since there continues to be a cadre of people in the VA system below Secretary Principi that are the culprits who create delay and lack of implementation of the Secretaries intent. It is critical that these people either get on board with the science and direction of the Secretary or be rooted out and relieved of responsibility. We know that there is room for healthy debate when science is weak or not yet founded; in fact, we expect such debate to take place.

However, when science is rock solid and clearly points to a treatment or research possibility, we expect action, especially when the Secretary of the Department of Veterans Affairs directs it. Some examples of this continued refusal to acknowledge the science are contained in the Veterans Health Initiative (VHI), a program supposedly designed to recognize the connection between certain health effects and military service.

If you read the VHI for Gulf War Illnesses, Caring for War Wounded and Health Effects from Chemical, Biological and Radiological weapons, you will clearly see that current science is not cited in these educational materials. The independent study courses show nothing about current studies related to sarin or any other development since 1999. This lack of current science cannot be an oversight since some of the most compelling research was done by both DoD and VA researchers. What we need immediatelyDoD:

Many service members in Iraq are being wounded by physical trauma, psychological injury and endemic disease. There are early indications of chemical warfare agent exposure, Depleted Uranium exposures, Lariam toxicity and anthrax/smallpox vaccine induced heart problems. This sounds very familiar to events that occurred post 1991.

The difference this time is that we understand that all the exposures above can cause health effects. However, what hasn?t changed is DoD is continuing to downplay the health outcomes that this war will present. As Executive Director of the NGWRC, my charge is to focus on ensuring the "Lessons Learned" from the first Gulf War are implemented.

Soldiers of this war should not have to face the significant obstacles Gulf War and other war veterans have faced when trying to receive care after serving their country. If DoD is allowed to have discretion in the implementation of public laws designed to screen soldiers and then also, allowed to present a false statement about the risk of exposure on the battlefield, then we have learned nothing from the mistakes of 1991.

We need this committee and Congress to STOP DoD from creating another generation of veterans who will suffer because current DoD policies don?t address the real health effects of the modern battlefield.

We need tracking systems that provide meaningful data that clinicians can cull trends from.

We need DoD to sponsor treatment research into alternative therapies that veterans are seeking on their own.

We need DoD to immediately release all studies paid for with tax dollars related to Gulf War Illnesses. A classic example is the Rand Study on the Anthrax Vaccine; this report was written, paid for, and yet never released. We need DoD to continue to study Gulf War illnesses issues where warranted.

Many opportunities still exist in researching the following areas. MILITARY IMMUNIZATIONS

A. Multiple Vaccinations.

1. Anthrax / smallpox vaccines and the dangers posed by multiple vaccinations. Recent reports suggest a connection between heart problems and multiple vaccinations

2. Genetic Screening - It is clear that the "one size fits all" approach to military vaccinations needs study and recent data shows promise in screening soldiers for genetic predispositions to vaccines and investigational new drugs.

The Department of Defense should be required to modify its Defense Medical Surveillance System (DMSS) medical reporting systems to insure it is capable of identifying whether current and future bio-defense vaccines and drugs have genetic risk factors.

DEPLETED URANIUM A. Depleted Uranium Oxides

1. Science has never been fully conducted to rule in or rule out, the harmful effects of Depleted Uranium exposures. Now that we control Iraq we should conduct large-scale studies to prove or disprove the long-term effects of DU on Iraqis and US Forces serving in Iraq from 1991 to now.

2. Soldier Screening - It is clear that DoD ignored both public law and common sense when it recently denied returning war veterans DU screening. More troubling is the fact that these soldiers medical records did not indicate that they served in an area where DU was a risk. Congress needs to mandate DU screening if DoD is not going to track and report where DU is used on the battlefield. Then we can conduct studies to access the risk.

CHEMICAL WEAPONS EXPOSURES A. Sarin

1. We are concerned about the dismissive tone the Army has taken related to the recent Chemical Weapons exposures in Iraq. Exposure to sarin nerve gas in concentrations too low to produce immediate symptoms causes irreversible brain damage according to studies by researchers at the University of New Mexico, Albuquerque, and the U.S. Army Medical Research Institute of Chemical Defense, Aberdeen, Maryland.

2. Anyone exposed to sarin gas should be identified by entry into his or her medical record.

3. The soldiers should be advised to monitor their neurological function as well as be required to undergo complete neurological testing upon return to their duty station. If any symptoms develop, they should be directed to Magnetic Resonance Spectroscopy to look for damaged areas of the brain.

4. Additional evidence supporting the link between adverse health effects and low-level sarin exposure is coming out everyday. We need DoD to pursue this science and develop treatment modalities rather than ignoring the facts.

VA: Congress should mandate that VA research be only Veteran related. Congress should mandate that all VA clinicians be certified in unique veterans exposures rather than allowing them the option to study the VHI series. All staff, plus residents and interns, must take all of the continuing medical education curricula that are listed at www.va.gov/vhi.

However, this data must first be updated with current knowledge and scientific input regarding exposures before mandating the curricula. By doing all of the simple no-cost steps outlined above, the VA could take a giant step toward making VHA more of a "Veterans' health care system" with real data culled from inpatient and outpatient records and military history taken at initial examination.

The VA Research Advisory Committee on Gulf War Illnesses should be given oversight into proposed and funded research projects at the VA. They should also be given the responsibility to review and make changes to the Gulf War Illness VHI series. We need the VA to put forth a real effort to share data, conduct studies and direct treatment for ill veterans.

We are encouraged by recent statements given by Dr Perlin and Dr Aisen on their commitment to making this happen. Gulf War veterans illnesses appear to be neurological in nature.

The time has come to stop looking for causes and start finding treatments. This means we also must service connect veterans for illnesses like ALS, MS CFS, FMS and MCS, which are more prevalent amongst Gulf War veterans and most likely connected to chemical warfare agent exposure.

Finally, we need to continue to monitor access and gather data from Gulf War veterans. What are their health complaints? What are the most service connected disabilities? Are they getting better or worse over time? These and many more important questions remain unanswered.

Some things have improved, but many things remain broken. I retired in October 2001 and filed an original claim in June 2003. I have been asking the VA to provide me with a Gulf War C&P examinations, pursuant to their statutory obligations under the Veterans Claims Assistance Act of 2000. As of today, I have had no response from VA. If someone at my level can?t get an exam, if doctors at the VA don?t have access to the current science, if the VA doesn?t promote the committee it stood up to look at the status of Gulf War Illness Research, if you cant find the Gulf War coordinator at your local VA center, then what does it say for the how the VA system is working for Gulf War veterans? We need Congress to refocus the VA. Secretary Principi cannot do it all by himself.

Some accountability would go a long way to fixing these problems. If there were consequences for bad actions, then people would at least be forced to change or loose their jobs. National Gulf War Resource Center Funding Statement National Gulf War Resource Center (NGWRC) is a national non-profit veteran?s organization registered as a 501(c) 3 with the Internal Revenue Service. NGWRC is not in receipt of any federal grant or resource. For further information Contact: President of NGWRC Mike Woods (301)-585-4000 10

Biography of Stephen L. Robinson

Since September 2001, Steve Robinson has been the Executive Director of the National Gulf War Resource Center (NGWRC), the nation?s leading advocacy group for veterans of the 1991 Gulf War and recent conflicts in Iraq and Afghanistan. A tireless advocate for veterans, Robinson has been at the forefront of the debate on a broad spectrum of veterans? issues ranging from Gulf War Illness to the medical and mental health treatment of returning Operation Iraqi Freedom (OIF) and Operation Enduring Freedom (OEF) veterans.

He has been called to testify numerous times before the House and Senate on veterans? issues. He also works daily with veterans in need as well as with the national and international media, speaking out for veterans and advocating on their behalf.

Robinson currently serves on the 12-member Veterans Affairs Research Advisory Committee on Gulf War Illnesses, a White House directed panel that NGWRC was instrumental in establishing. He is also a Special Advisor to Vietnam Veterans of America on chemical and biological weapons exposures resulting from Project 112 testing during the 1960 and 1970s.

A former Airborne Ranger and Special Forces Instructor, Robinson served with the 1st /10th Special Forces immediately following the 1991 Gulf War. In 1991, he deployed as a medic with the Operational Detachment Alpha Team 32 to Northern Iraq in support of Operation Provide Comfort, where he worked providing humanitarian assistance and aiding in the repatriation of Kurds.

In his final assignment, Robinson served as a briefer and analyst for the Gulf War Illnesses research effort in the Office of the Secretary of Defense.

Robinson is a graduate of numerous Army schools and training courses including: Airborne, Ranger, Jungle Warfare, Marine Corps Amphibious Scout Swimmer, Advanced International Long Range Surveillance Course, Special Forces Jumpmaster Course, Instructor Training Course, Advance Trauma Lifesaving Course, Combat Lifesaving Course, Tactics Certification Course, Survival Escape Resistance Evasion Course - High Risk, and the Explosive Ordnance Demolition Course. He has used his expertise to train numerous organizations in survival, Hostage Rescue and Close Quarters Battle, and Hostage Rescue and Negotiations. Among the agencies he has worked with are the U.S. Air Force Security Police during the worldwide Peacekeeper Challenge competition, and the Correctional Emergency Response Teams of Panama City and Eglin Air Force Base in Florida. Robinson was hand selected to teach survival and land navigation to the U.S. Embassy Staff in Bonn Germany. He also founded and trained the volunteer Search and Rescue Organization for Santa Rosa County, Florida. He trained the staff and participants of a Youth Outreach Program called Adventure Challenge. This program took adjudicated youth from the juvenile justice system of North West Florida and exposed them to outdoor living and positive role models from the local University.

The program was adopted as an elective for collage students pursuing a criminal justice degree. Robinsons? military decorations include: the Defense Meritorious Service Medal, the Army Meritorious Service Medal, the Army Commendation Medal with four oak leaf clusters, the Army Achievement Medal with four oak leaf clusters, the Humanitarian Service Medal, Expert Infantry Badge, Master Parachutist - US, Master Parachutist - German, Master Parachutist - Korean, German Marksmanship - Silver, German Expert Infantry Badge - Bronze, Ranger Tab, and Special Forces Combat Patch.

[Margaret Diann]

First off, what hearing was going on when the TV C-Span switched to news of President Regan's death? ... and would they be willing to rebroadcast it?

Little Sparrow, do you have too many immature red blood cells? This could be the fatigue of the 'gulf war syndrome' CFS and CFIDS. This is the most provable harm, if all gulf war syndrome vets have this, it would indicate that 2-butoxyethanol poisoning should be seriously considered

I believe a chiropractor who came down with melanoma eye cancer in 1992 was a victim of the 2nd hand solvent exposure of the Exxon Valdez oil spill cleanup. He died in Jan, 2004 from a rare liver cancer.

Other things you mention, metabolic disorder (there is endocrine disruption with this) and the main cause of kidney stones in your group.

Blood? Kidneys? Paranoia? These are things caused from this chemical, too; in fact, it masks true psyciatric disorder.

I share the following of what to look for with this chemical's harm:
Somewhere in Louisiana there is a medical facility that is trying to diagnose why Richard collapsed ... why his red blood cell count is so low he shouldn't be walking around. (One cause of grande mal seizures is lack of oxygen, by the way)

He and others who worked the Exxon Valdez oil spill cleanup can give medical science a valuable comparison to other groups whom I also suspect are harmed by 2-butoxyethanol I am talking about the common cause of fatigue that has been eluding medical science: the fatigue by the immune system going awry and prematurely destroying the red blood cells.

Check this for all with 'gulf war syndrome' symptoms regardless of when the fatigue began; check it for those with CFS and CFIDS, ME & similar descriptions of these multiple, odd symptoms. Even MAYO clinic has seen some of these workers and is 'stumped' on what is going on. But should that surprise us? How much time and money and effort has gone into the study of the harm to the gulf war vets of 1990, and even with this chemical on the list of solvents & pesticides that has harmed them, it is still not suspect.

Also known as ethylene glycol monobutyl ether ... this chemical is in hundreds of products used by the public ... it is NOT SAFE. But, the warnings are not heeded

Why is medical information from those known harmed to 2-butoxyethanol so important? Because it masks itself in so many multiple other ailments that it has been getting away with a lot of harm, and other ailments are given the 'credit' ... skewing medical studies BIG TIME! Remove all those with too many immature red blood cells from the prostate cancer research results and see what is left!

What odd assortment of symptoms would someone have?

Compensated Hemolytic Anemia will be evidenced by too many immature red blood cells (Reticulycite ratio will be off) and what is the size and shape of the red blood cells? (Do a manual cound of th e White Blood Cells, if there are too many immature red blood cells... also expect a lot of other tests to give false OK's like the liver test, for instance.

Immune System is prematurely destroying the red blood cells & possibly other organs/glands, too

Bone Marrow Compensates by making more red blood cells, but they are low functioning - Thus the FATIGUE shows up ... within 2 days from too much exposure - It will underlie all other health ailments. (These blood cells don't become mature and can't store and help the body utilize the iron ... the oxygen) Paralysis possible

Disrupts the glandular system - Endocrine Disruption high or low blood pressure, high or low blood sugar (auto-immune pancrease?), metabolic imbalance (check thyroid when kidney stones show up)

Targets Kidneys - Blood in urine

Targets Liver Tests are off when there are too many immature red blood cells

Damages Central Nervous System Very irritable personality changes, all-the-time depression, difficulty sleeping, suicidal tendencies, short term memory loss, difficulty concentrating. Note also that those chemically overexposed, or poisoned look OK, but they are not ok

Muscular and skeletal Systems Including joints. Eventually bones don't heal

Dries skin Warning signs will say that it 'defats' the skin. It kills fat cells leaving behind 'leathery' skin. It reminds me of what accutane does. Why would anyone deliberately remove moisture from their body for the rest of their lives ... in an effort to dry up acne?

It is a teratogen It damages the unborn; it damages the testes and can cause zero sperm Also, the quality and quantity of sperm in our men nationwide has been diminishing at 2% per year for the last 40 years or so. This chemical should be considered as a cause. People coming down with brain tumors today should also consider whether their parents were overexposed to 2-butoxyethanol ... such as Thelma

Cancers Leukemias, lymphomas, tumor of the brain, kidney cancer, liver cancer, thyroid cancer, and other glands, such as pancreas ... Also prostate cancer and ovarian cancers.

Horrible headaches Pituitary headaches?

What else do we need to learn about 2-butoxyethanol? Many are harmed by this chemical. It is so prevalent, I believe everyone must know someone and are at risk for harm themselves!

PRAYER TO AGREE WITH for these

Hazardous professions: painters, plasitics and dry cleaning business, oil clean up and home clean up products; those living near airports (jet fuel additives #s 2-6 are listed as pesticides by EPA)

Worst exposure: vapors in one's eyes
Simple Green example I understand that DAWN has a spray version for cleaning pots 'n pans. I'd be very careful if I used that product and would suggest getting chemical goggles before doing so. Same for mechanics who might spray CLP or de-rust products or use brake fluid.

Second hand solvent exposure possible for children, spouses, those in small areas where those harmed frequent (doctors' offices, museums, shopping malls, marathon racers)

As an aside, there is a book being released July 15, 2004 on the effects of the Exxon Valdez oil spill. Its emphasis is more on the environment; however, there are worker issues, too

What were you doing when the 'fatigue' began?

By vapors from a chemical like 'Corexit' per 2 different reports of Gulf War Vets on 2 other discussion forums! The ARMS room, the ARMS room!