Board Members

Representative Jerry Moran

1519 Longworth House Office Building

Washington, DC 20515

 Dear Congressman Moran;

                 Thank you on behalf of Kansas Veterans, as well as Veterans everywhere for your continued interest and support of efforts to find answers to the health problems suffered by those who served our country during the Persian Gulf War. It is our sincere belief that continuation of Kansas-based research, as well as certain research underway elsewhere, will unravel questions concerning this illness, lead to treatment for those who now suffer and suggest prevention for current and future servicemen and women who must go in harms way.

                 As you know, Kansas has managed to play a significant role on a shoestring and without Federal help. The $2 million requested for future research would build on that starting point, utilizing a network of interested parties and resources that exist within our State. This letter explains what research would be carried out, what benefits can be expected and how the Kansas Persian Gulf War Health Advisory Board, research institutions and individuals have made themselves available accomplish these goals.

                 The three major research components are:

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 are summarized below;

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

 Background:        There are currently no well accepted, objective and practical tests are 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.

1.                   3.             Identifying Treatments & Activities Associated with Improved Health

2.                    

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.

3.                   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.

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.

John S. Neuberger, DrPH is an epidemiologist at the University of Kansas School of Medicine in Kansas City. He has a research interest in the epidemiology of neurotoxins and assisted Dr. Steele in the methods and questionnaire design of the original study. Dr. Neuberger is a member of the Kansas Persian Gulf War Health Advisory Board.