Gulf War Illness "It's a Mess"

by Denise Nichols, Staff Writer 

This following articles provides a very good update on the Gulf War Illness Research Study at UTSWMED by Dr Hailey.  According to my information, after having talked to DR Hailey several times over the past weeks, the Secretary of the VA and UTSWMED are trying to resolves these issues and not to interrupt the progress of research being made. 

Dr Hailey will be testifying at this week’s July 30th House Veterans Committee- Oversight and Investigation Subcommittee in DC.  Dr Hailey has completed the first step which was a ten year follow up study on the Navy Seabee group that was the first group studied by UTSWMED when Dr Hailey first started the research on Gulf War Illness.

That portion was subcontracted out to a nationally recognized company to perform after the survey questionnaire that was used in the initial testing of the Navy Seabee group was updated and revised by UTSWMED and after significant training for the telephone surveyors.  That portion which was step one has been completed.  The thousands that were interviewed represent every major service and every major unit that were in Operation Desert Storm- Gulf War 1(90-91). 

We at VT feel that Senator Akaka response to the VAIG Report was a knee jerk reaction and inappropriate.  Instead of the Senator writing a letter to the Secretary of the VA to immediately cancel this invaluable research contract and to put out a press release covering the same, it seems he should have realized that it was time for all on the Hill to become fully engaged and that he should call for JOINT HEARINGS of the HOUSE and SENATE VA Committees to not only have all parties to this continuing problem at UTSWMED VA Collaborative Center  to testify on this so that all concerned parties on the hill will have full and complete knowledge of the problems and have the opportunity to review the research progress and to address questions involving the progress and intervening complications of the contract situation in order to resolve the conflict and allow the research to continue without interruption but to hear formally from the VA Research Advisory Committee and have time to review and question the findings in the November 08 Landmark report on Research into Gulf War Illness.  Then a hearing to review the progress of all other research through the DOD-CDMRP program and any other research from independent groups that connects with Gulf War Illness.  This would be a review by the Joint House and Senate VA committee that is sorely needed to bring all elected officials up to date and current on Research into Gulf War Illness. 

It is also time to have the same joint hearing approach to the Benefits and Care portion of the Gulf War Illness situation.  Thousands of Gulf War Veterans are still battling for Claims Approval 19 years after the Gulf War 1 (90-91)(Operation Desert Storm) and this group is sorely being forgotten in the mass of returning OIF/OEF casualties that have flooded the VA system.  This current divided approach by the House and Senate VA Committees is only a further delay into resolving the issues that face ill gulf war veterans.  The veterans need to be heard and addressed fully.  The veterans have suffered through 19 years and need to be fully heard by both committees in regards to the claims problems they have suffered and the disjointed response to their care at the VA.  The VA systematically since the start has tried to turf these ill veterans to the psychology department of medicine classifying them as PTSD or psychosomatic and ignoring their PHYSICAL Complications of exposure to multiple synergistic toxic substances that impact each of the body’s systems including the

immune, neurologic, cardiac, gastrointestinal, endocrinological, urological, skeletal, henatological and respiratory systems.  The VA has done a disservice to these veterans of Gulf War I and the House and Senate Jointly should themselves come together to review, question, and take the first coordinated steps to correct this disservice to the Gulf War 1990-91 veterans.  Currently no bills have been introduced in this session of congress addressing health care and benefits of the Gulf War 1 Veterans.  Again all gulf war veteran advocates and groups should be at the table to address their concerns and proposed corrective action that each have to help in full resolution.  The Individual veterans with example cases need to also be allowed to testify to specifically highlight the individual veterans’ problems.

In the meantime one veteran of the thousands that have received poor care and resolution of his health care concerns much less his claim is on his tractor making his way from Missouri to DC to once again highlight the problems of thousands of his fellow Gulf War and to get his own issues addressed correctly.  Matt Letterman that we have featured in VT articles Desert Storm Diaries:  The War after the War is that individual coming to DC as he did in September of 2008 to make public comment at the VA Advisory Committee on Gulf War Veterans but this time is different!  Since then his claim problems have circulated throughout VA Headquarters and the office of his Congresswoman Emerson without resolution.  The VA Judical Review Person Keith Stabler in a letter acknowledges the veteran is significantly disabled, he should move forward, but and this is the kicker CLAIM DENIED.  This time a fellow veteran did not go from Kentucky to Missouri (Central close to Arkansas)to pickup Mr Letterman to go to DC but Mr Letterman is using the only vehicle he can his tractor.

Mr Letterman successfully received Social Security Disability in a record time but apparently that doesn’t count to the VA.  Mr Letterman case is an example of how convoluted and wrongfully the VA system is operating.  When his claim was submitted the VA Regional office in St Louis neglected to schedule a full C and P exam and his DAV service officer has failed in monitoring to be sure that each step was done in a complete manner and has offered no effective consultation with DAV past client, Mr Letterman.

So the veteran/veterans suffer years and who else?  Well Mr Letterman is sole support to his five children and they are suffering tremendously.  Mr Letterman’s marriage of umpteen years has fallen apart and the lack of care and claim resolution with the VA has to be one factor that did not help.  Mr Letterman is a proud veteran with a quiet dignity that knows this is wrong not only for himself but the thousands of others.  Mr Letterman’s health is at stake here, last September his feet were swollen so much he had to wear boots with the flap open!  Now his swelling has extended up both legs and he cannt even bend his knees!  His Abdomen is swollen like a nine month pregnancy.  He has experienced severe chest pains that at the time he thought his time on earth was ending.  He can not walk far because he is short of breath and certainly cannt keep up with someone even his own age!  Mr Letterman has Senator Bond now involved.  How many at VA DC, regional and how many on the hill does  it take to screw in the lightbulb and make this system work for not only Mr Letterman but the thousands of Gulf War I veterans?

Follow with us Mr Letterman’s travel by tractor at  http://tractortodc.blogspot.com/

Gulf War illness research threatened by VA, UT Southwestern disputes

10:38 AM CDT on Sunday, July 26, 2009
By SCOTT K. PARKS / The Dallas Morning News
sparks@dallasnews.com

 10:38 AM CDT on Sunday, July 26, 2009
By SCOTT K. PARKS / The Dallas Morning News
sparks@dallasnews.com
The UT Southwestern Medical Center conference room was brimming with dignitaries on April 21, 2006. U.S. Sen. Kay Bailey Hutchison and Dallas billionaire Ross Perot looked on as university administrators and the federal government agreed to spend $75 million to research the causes of Gulf War illness.

More than three years later, the U.S. Department of Veterans Affairs has spent only a fraction of the earmarked money, and contract disputes between the VA and UT Southwestern are threatening the entire project run by noted epidemiologist Robert Haley.

Also Online Link: Learn more about the illness that affects 200,000 veterans
The parties who set up the project – the VA, UT Southwestern and Hutchison – say they are working to resolve the disputes and keep the contract going.

"We are going full tilt," Haley said last week. "My understanding is that we are doing research and not to worry."

But a flurry of behind-the-scenes activity this month indicates that plenty of people were worried about the future of Haley’s investigation into why so many 1991 Persian Gulf War veterans suffer from chronic fatigue, loss of muscle control, headaches, dizziness, memory loss and joint pain.

A critical report issued by the VA’s inspector general on July 15 sheds light on years of infighting and conflict between the VA’s contract managers and UT Southwestern.

The main dispute centers on Haley’s reluctance to fulfill a contractual obligation to provide the VA with some medical records of the veterans who participate in his study, according to the inspector general.

When Gulf War veterans sign up to participate in research studies – they subject themselves to sophisticated MRI brain scans and other tests – they must sign forms consenting to share their medical records with researchers.

Haley declined last week to talk about his position on the consent forms.

Tim Doke, UT Southwestern’s vice president of communication and public affairs, said Haley and his team were concerned about veterans’ privacy. But Doke acknowledged that researchers will retrace their steps and get the veterans to sign new consent forms acceptable to the VA.

"We are going to re-consent the veterans in the study so the amount of information the VA needs is available to them," he said. "Everyone is working in good faith."

The report also criticizes UT Southwestern for ignoring contract provisions requiring protection of veteran medical data and privacy.

"Given UTSWMC’s continued refusal to comply with the terms and conditions of the contract, UTSWMC has given VA no option other than to terminate the contract for default," the inspector general report said.

Sen. Daniel Akaka, D-Hawaii, chairman of the Senate Veterans Affairs Committee, wrote to VA Secretary Eric Shinseki the day after the inspector general’s report became public.

"I ask that you look into this matter immediately and implement the recommendation to terminate the contract for default so that VA’s funds can be directed to research projects that will help those veterans affected by Gulf War Illness," Akaka wrote.

What’s at stake

Millions of dollars are at stake, and Jim Bunker is among the many Gulf War veterans who want the money to keep flowing to UT Southwestern and Haley.

Bunker, now 50 and living in Topeka, Kan., was an Army artillery officer in the Persian Gulf from December 1990 to May 1991. He believes he was exposed to nerve gas after American troops blew up Iraqi ammunition dumps.

The VA classifies Bunker as 100 percent disabled from post traumatic stress disorder. He suffers from headaches, chronic fatigue, body aches and diminished ability to think clearly. He doesn’t believe his symptoms result from stress. Instead, he blames his problems on battlefield exposure to toxic chemicals.

Bunker said Haley is the only researcher who is pursuing the real causes of Gulf War illness, which affects the brains of an estimated 200,000 veterans.

"They need to quit messing with our health care and just let him do his work," Bunker said. "He is not wasting the money."

When the VA and UT Southwestern inked the research contract in 2006, the deal was said to be worth $75 million in federal funding – $15 million a year for five years.

Today, no one is quite sure how much of that $75 million UT Southwestern will see.

Doke said Haley and his team have incurred an estimated $19.2 million in expenses so far. UT has sent an estimated $15.5 million worth of invoices to the VA and has received $9.1 million in reimbursement payments.

"This is not a trivial gap," Doke said.

The reimbursement gap stems from the disputes between VA contracting managers and UT Southwestern administrators. They’ve been disagreeing about whether researcher salary scales are justified and whether UT Southwestern or the VA should end up owning computers and other equipment purchased for the Gulf War illness project.

But the main bone of contention was how much medical information and data on human research subjects UT Southwestern is obligated to share with the VA.

The inspector general says that the VA’s contract required Haley and his staff to share medical information with the VA and that the information would become the exclusive property of the VA.

In October 2008, Haley and his staff "unilaterally changed" the informed consent forms that veterans must sign to participate in the study, according to the inspector general’s report. The changes, in effect, were designed to prevent the VA from getting some medical records.

It seems that Haley and his staff felt many veterans feared that the VA might somehow use the medical data to deny them benefits.

"The principal investigator [Haley] has not provided any evidence to support his conclusions," the inspector general’s report said.

‘Syndrome’ label

The contract dispute between the VA and UT Southwestern is only the latest controversy surrounding the study of Gulf War illness.

Haley is a leading proponent of the theory that the multiple symptoms reported by thousands of Gulf War-era veterans should be labeled a "syndrome."

The symptoms are caused, he believes, by battlefield exposure to toxic agents such as pesticides, radioactive material used in armor-plated vehicles, sarin nerve gas and pills that veterans took as an antidote to nerve gas.

Others are not convinced. Some researchers believe the sick veterans suffer from psychological disturbances similar to post traumatic stress disorder.

"Our end-point goal here is to hand the VA a diagnostic test that they could then franchise out to all VA medical centers and see how many veterans have this brain illness," Haley said last week. "And then everyone can develop a promising set of treatment ideas."

A change in parties

The politics in Washington have changed dramatically since Hutchison obtained federal funding for the UT Southwestern project in 2005. Back then, she and her fellow Republicans controlled the House and Senate. And Republican President George W. Bush controlled the VA and other federal agencies.

Democrats now control both houses of Congress and President Barack Obama is in the White House, where everyone remembers that Texas went for Sen. John McCain in the 2008 presidential election. Obama’s appointee, Shinseki, is now secretary of veterans affairs.

Privately, UT Southwestern and its supporters know the politics don’t bode well for a smooth path to federal funding. U.S. Rep. Chet Edwards of Waco, who chairs the House Appropriations subcommittee on military construction and veterans affairs, may be UT Southwestern’s ace in the hole in Washington. He is an influential Democrat on Capitol Hill.

Publicly, Hutchison, the VA and UT Southwestern are saying they want to put veterans’ health care above bureaucratic bickering.

"I think there has been a legitimate disagreement, and that has caused a lot of delay," Hutchison last week. "Now, we’ve cleared the air and I have every confidence that this research will go forward."

Hutchison’s confidence is based, in part, on a July 15 letter she received from Shinseki, who promises that "the VA has no intention" of using Haley’s research in connection with VA determination of benefits for individuals who participate in the UT Southwestern study.

"As we have discussed," Shinseki wrote to Hutchison, "I very much want to see this study pursued to a successful conclusion."

AT A GLANCE: INSPECTOR GENERAL’S REPORT The Office of Inspector General of the U.S. Department of Veterans Affairs reviewed a contract under which the VA is funding UT Southwestern Medical Center’s research into the cause of Gulf War illness. Among the office’s findings:

•The VA and UT Southwestern have struggled over which entity owns the data generated by research on thousands of Gulf War veterans suffering from various illnesses.

•UT Southwestern tried to prohibit the VA from getting access to some information gathered in the project. Both sides said they were concerned about veterans’ privacy.

•The method that UT Southwestern used to calculate researcher salaries did not allow the VA to determine whether those salaries were proper under the contract.

•VA officials claimed ownership of all equipment that cost $5,000 per item – such as laptop computers. Only later did the VA realize that the contract stipulates that the equipment is owned by UT Southwestern.

•VA contract officers repeatedly rejected UT Southwestern invoices for reimbursement of expenses because they contained errors about unauthorized travel, salary rates and other matters.

•The VA and UT Southwestern argued about training of research personnel. UT asked the VA to waive some requirements under the contract, but the VA denied the request.

•In an effort to work more closely together, the VA moved personnel onto the UT Southwestern campus to work with researchers. But the VA provided its people with laptops that didn’t have the proper software to do their jobs.

SOURCE: Department of Veterans Affairs, Office of Inspector General