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Vets worry Gulf War illness board has lost its autonomy

As U.S. military forces entered Kuwait in 1991, Iraqi President Saddam Hussein set the country's oil wells on fire. The smoke was so thick that the service members couldn't see the sun, and droplets of oil rained down from the sky. (Bergmann & Moore/Kelly Kennedy)

As U.S. military forces entered Kuwait in 1991, Iraqi President Saddam Hussein set the country’s oil wells on fire. The smoke was so thick that the service members couldn’t see the sun, and droplets of oil rained down from the sky. (Bergmann & Moore/Kelly Kennedy)

Members appointed, terms ended without input; fewer vets on board; not allowed to release reports to VA secretary without permission from VA

By Kelly Kennedy

Bergmann & Moore

A Gulf War illness advisory committee will take part in its first meeting Tuesday since the Department of Veterans Affairs appointed new members, rather than allow the committee to select its own members, in defiance of Congress’s demands for the committee’s autonomy.

The House, in a bill last year, as well as a letter to VA, insisted that the chairman of the Research Advisory Committee on Gulf War Veterans’ Illnesses appoint the majority of the committee’s members.

Instead, VA informed the former chair, Jim Binns, as well as half the committee’s other members, that their terms would end. It then appointed new board members without bothering to tell the committee’s staff or members of the changes. Instead, it sent out a press release.

It also updated the committee’s website without input from the committee, mistakenly changed the wording of the committee’s charter on the website, and did not include asked-for updates, such as notes from the last meeting, on the site.

“This is about VA leadership not listening to Gulf War illness needs or to the Gulf War community,” said Anthony Hardie, a Gulf War veteran and advocate, and former member of the committee. “The recommendations from the RAC leaders and former members were ignored.”

The relationship between Gulf War vets and VA has often been contentious, beginning with VA’s initial and reoccurring push toward research that would show Gulf War illness was a mental health issue, as well as ignoring research that shows the issues are physical.

Recent research offers visible, physical signs of the disease; probable causes; and hope toward treatment, none of which would likely have come about without an autonomous board to review VA’s work, and all of which VA seems to be working to quash. Researchers say they have not been contacted by VA staff, and VA has not publicized the findings.

Finding markers of the disease, such as recent work that showed differences in sick Gulf War veterans’ brains versus healthy vets’ brains on MRI scans, could mean making sure those vets receive the benefits and healthcare they earned. It also means future generations may be able to avoid exposures that have led to the disease.

See also: Gulf War illness: It’s physical, you can see it, and there is good news on treatment

But now, the original intent of the research advisory board seems to have been lost as VA moves to diminish the committee created for its own oversight.

VA announced earlier this month who had been selected to fill open positions on the committee. But the committee had no say in the appointments and was not notified of the new members, Hardie said. VA also took over the committee’s website, updating it without asking for input, Hardie said.

The replacements lack the diverse mix of sick and well veterans, as well as officers and enlisted vets involved in previous committees, Hardie said.

“All four are officers,” said Hardie, a former special operations soldier. “I was enlisted. Generally, when you’re representing the interest of veterans, you want a good mix.”

Enlisted vets, purely by virtue of numbers, were more likely to deploy than officers, and they were less likely to have a desk job after they arrived in theater, he said.

The committee also now includes no traditional veterans service organization members. In the annual Independent Budget, put out by Disabled American Veterans, Paralyzed Veterans of America, AMVETS and the VFW last month, the VSOs asked Congress to “conduct vigorous oversight on the direction of VA research and its implications with the research community and ill Gulf War veterans.”

Hardie said he expects Congress to take action in 2015, especially with pressure from the VSOs.

“It’s safe to assume we’ll see some sort of legislative effort this year,” Hardie said.

Still, the veterans see some hope in the new board members.

“We need them to do good things for Gulf War veterans,” Hardie said.

After Desert Storm ended in 1991, about one out of four troops returned home with or developed later a series of symptoms that included gastrointestinal issues, headaches, muscle fatigue and short-term memory loss. Some researchers believe those symptoms may be different stages of the same ailment. And, just last week, research found that some veterans who took pyridostigmine bromide pills—or anti-nerve agent pills—who had a particular gene type were 80 times more likely to become sick. This appears to be yet another sign that the disease has a defined cause. Other studies have found connections between other AChL inhibitors, such as insecticides, repellents and Sarin gas, and veterans with different symptoms of Gulf War illness.

Binns, the former committee chair, said he thinks Stephen Hauser is a good choice as the new chairman. He’s a former president of the American Neurological Association, and research has shown direct ties to neurological injury in Gulf War veterans. And, Binns said, Hauser chaired the 2010 Institute of Medicine report that determined Gulf War illness is a real and not a psychiatric condition.

“His report also emphasized  that answers to treatments could still likely be found with the right research,” Binns said. “Dr. [Ronnie] Horner should also be good, as he was the principal investigator of an important study several years ago that showed Gulf War veterans have a higher rate of ALS than other veterans.”

But he said he was not personally familiar with any of the other new members, none of whom have been involved in Gulf War illness research or advocacy in the past. And while he said he hopes the appointments mean VA is trying to do the right thing, he believes there needs to be increased pressure to ensure that is the case.

“In the future, it won’t be in the public eye,” Binns said. “The changes made by VA to the [committee] charter in 2013 ensure that the committee can no longer criticize VA programs and no longer has a right to its own independent staff.  It almost certainly will not be allowed to testify before Congress without VA censorship.”

The censorship began in 2013 when VA determined the committee is not allowed to release any documents without VA permission—including to the VA secretary. When Binns attached a research report to his letter to the VA secretary in 2013, it was removed by VA staff members. The committee members worry the secretary hears glowing reports from his staff without learning of the reality.

“Unless the VA secretary gets pretty wise, pretty quickly, he’s not going to understand,” Hardie said. “It all looks good on paper.”

Last year, Representatives Mike Coffman, R-Colorado, and Ann Kirkpatrick, D-Arizona, co-sponsored a bill that required that the committee be appointed by its own members, as well as returning oversight responsibilities over Gulf War illness research back to the committee.

The legislation allowed the committee to have independent control over its budget, staffing, spending and personnel decisions. It also required that animal research be considered by VA, just as human studies are. Often, animal studies are the only research available for environmental exposures because researchers aren’t allowed to dose humans with Sarin gas. The committee also would not have required VA approval before releasing its reports.

The House passed the bill, but the Senate did not take it up. It is expected to come up again in 2015.

The changes to the committee were made under Sec. Eric Shinseki, and board members believe they were in retaliation for work the board had done.

First, the board offered a no-confidence vote in VA in 2012, and then a whistle-blower testified VA had intentionally misled the public about research that would have led to benefits for veterans.

Because none of the new board members have worked on the committee before, Binns fears it will lose any institutional knowledge of the work that has already been done, and that it still does not have the independence to alert Congress or even the VA secretary of the work it does.

“It lacks the independence and authority it had before,” Binns said. “Even if the new VA leadership is serious about pursuing good research, if the wind changes again in two years, that will all go away, and no one in Congress or the public will be the wiser.”

For call-in information for Tuesday’s meeting, please email kkennedy@vetlawyers.com.

Bergmann & Moore, LLC, is a national law firm dedicated to serving the needs of veterans in compensation claims before and against the Department of Veterans Affairs. The firm’s partners are former VA attorneys who are very familiar with the VA system. Bergmann & Moore handles all kinds of cases, but has a concentration in claims involving PTSD, military sexual trauma, Gulf War illness and complex medical issues, such as brain cancer or degenerative issues, veterans exposed to Agent Orange often face. For more information, to submit news or to sign up for an email version of this blog, contact Kelly Kennedy at kkennedy@vetlawyers.com

 

 

 

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