Gulf War Illness Research at UT Southwestern Medical Center

THE STAKES ARE HIGH FOR GULF WAR VETERANS(90-91)

Can The System of Government ie VA Work with a Collaborative Center?

The landmark VA – UT Southwestern Medical Collaborative Center was a first!  It came about because VA kept spending money for Gulf War Illness in the wrong direction with the focus always on Psychological instead of Physiological damage.  The Research Advisory Committee on Gulf War Illness had repeatedly documented and examined the problem. 

A Senate VA Committee hearing documented the stalemate.  It was a hearing that did not receive much press coverage but should have at the time.  But at the lead table of witnesses was Dr Bernard Rostkner, Mr Ross Perot, and Dr Robert Haley.

The government was dragging its feet and not being supportive of gulf war veterans that continued to bring their issue of poor health to the forefront.  The Gulf War Veterans had fought and gotten legislation that set up the Research Advisory Committee on Gulf War Illness. 

They had continued to see the funding for research and studies that would connect exposures from the gulf war be directed into psychological stress research.  The care the gulf war veterans were receiving and still receive was PTSD based and heavy on the stress.

Gulf War veterans were complaining and still complain that the symptoms were more physiological and quality of life issues were not being resolved.  The debilitating fatigue, muscle weakness and neurocognitive issue along with other gastrointestinal, rashes, visual changes, and other physical problems were not being connected or dealt with effectively.   

Psychotrophic type drug therapy was failing this group of veterans.  The gulf war illness was proving itself not to be PTSD and in 2004 the VA RAC GWI published their first report and its conclusions were that this was not stress.  In an effort to get more answers the research funding was basically redirected to UTSW to find the answers that were needed.

The funding was for five years, the project just entering into the third year after extensive work had been done to form a world class team of experts at UTSW Medical. The plans had been laid through extensive collaboration.  The first portion was the National Telephone Survey utilizing the  survey questionnaire that had been originally developed by Dr Haley’s team. 

The telephone surveys were the most extensive ever done.  The survey was subcontracted out to a national recognized company and training of interviewers was extensive.  The time spent doing this was significant for the veteran and many times it was done through several indepth phone interviews.  Through this extensive work sampling and comprehensive neurological testing of veterans could be accomplished by unit, location, and many factor analyses.

The Naval Seabees who had been Dr Haley originial sample group from the 90′s were used as the first test group to be brought back in for the complete testing that took 7 days.  Through doing this work they were able to have a follow up study after ten years to assess their health status to see what changes had occurred, to have the newer more extensively developed test panel and to determine which specific tests would be the best diagnostic protocol and to cut down the panel of tests from 7 days to 4 days. The testing being used was cutting edge diagnostic neurological testing.

It is strange that an VA IG report was started under the previous VA leadership of Secretary Peake and continued under the New Secretary of the VA.  Why was this investigation started, who started it and why?  Who are the players and what is the true motivation behind this situation?  Our questions are why cann’t this situation be resolved instead of the funding suddenly cut at a critical period of the research?!  Extensive work had been done.  There has been friction continuously but why?  Why did Senator Akaka Chair of the Senate VA Committee not have full hearings that involved the full committee membership on this issue? 

Why did the House VA Committee remain quiet despite hearings on July 30th that included extensive testimony from the VA RAC GWI and Dr Haley?  Is political party politics entering into the process when it should not be when our Gulf War Veterans Health Issues are so involved after 19 years?  Why when the situation seemed to be being resolved a sudden unexpected conclusive meeting held in Dallas, Texas that cut off the funding?  It appears to all concern that an immediate Joint Hearing of the House and Senate Full VA Committees should be called immediately so that this issue can be fully explored and the work that has been done that is so critically important to the Gulf War Veterans not be delayed or stopped.  It would also be of interest if there is any White House administration involved in this review.

Why is a landmark collaborative VA and a major highly respected institution project being cut at the beginning of the third year, is there more to this than meets the eye?  Why cann’t the issue be resolved productively?  Which side is not playing straight?  The Gulf War Veterans deserve a thorough review and the importance of what stands to be lost fully investigated!  The VA needs to rebuild trust with the Gulf War Veterans and this certainly is not helping the veterans.  The veterans stand to lose time and a team that was working in their benefit to get answers.  It was more independent than anything else the veterans had had in the past 19 years.

Here was the latest published news coverage of the situation:

DALLAS MORNING NEWS EDITORIAL: "Find the Truth About Gulf War Illness"
Dallas Morning News Editorial

(Dallas, Tex. – September 1, 2009) — Just a few weeks ago, congressional influence and a large dose of common sense seemed to have saved UT Southwestern Medical Center’s research efforts into why so many veterans of the 1990-91 Gulf War returned home with unexplained illnesses.

But despite the efforts of Sen. Kay Bailey Hutchison and Rep. Chet Edwards, D-Waco, to resolve the dispute, the U.S. Department of Veterans Affairs last week pulled the research plug.

It’s critical that this potentially ground-breaking research doesn’t wilt on the bureaucratic vine. Unless a new arrangement is reached quickly, the VA’s decision would dash the hopes of veterans seeking answers to their illnesses and could leave UT Southwestern holding the bag for millions of dollars in research for which it hasn’t been paid.

The solution rests with the VA. In the same report in which it urged termination, the VA’s inspector general noted that the project could have been funded with a federal grant instead of a contract. Moreover, it was noted that this change would have reduced bureaucratic red tape associated with federal contracts and averted the disputes that led to the contract’s cancellation.

It is particularly ironic that it was the VA that originally pressed for a contract instead of a grant, which is the more common scientific research agreement.

This strikes this newspaper as a relatively simple change that would allow the research to move forward.

Research findings could change the lives and treatment options for thousands who bravely served their country and have lived for nearly two decades without answers. Reactions to nerve gas, other chemical weapons, pesticides, depleted uranium munitions or some combination are among the possible causes being investigated.

Too many avoidable squabbles have stalled the research since Hutchison earmarked the original $75 million in 2005 to fund the five-year research program. VA officials say the agency will continue its own research into the source of the illnesses and not abandon Gulf War veterans.

Perhaps, but given the ongoing battle between Vietnam veterans’ organizations and the VA over the effects of Agent Orange, a chemical defoliant used throughout that conflict, we think Gulf War vets deserve the sort of independent research that UT Southwestern can provide.

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SIDEBAR: Anatomy of a stalemate
Complications in the partnership between the U.S. Department of Veterans Affairs and UT Southwestern Medical Center:

•The two have struggled over which owns data generated by research on Gulf War veterans.

•UT Southwestern tried to stop the VA from accessing some research info. Both sides cited concerns about veterans’ privacy.

•UT Southwestern’s method of calculating researcher salaries prevented the VA from determining whether they complied with the contract.

•The VA initially claimed ownership of all $5,000 and up equipment, including laptop computers.

•The VA rejected invoices for reimbursement because of errors involving unauthorized travel, salary rates and other matters.

•The two disagreed about research personnel training of research personnel.

•The VA moved personnel to UT Southwestern to help researchers, but their laptops didn’t have the proper software to do their jobs.

SOURCE: Department of Veterans Affairs, Office of Inspector General

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