Gulf War illness research threatened by VA, UT-Southwestern disputes

Written by SCOTT K. PARKS / The Dallas Morning News

12:20 AM CDT on Sunday, July 26, 2009

(Dallas, July 26, 2009) - 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.

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

sparks@dallasnews.com