SOURCE: Forbes, Rebecca Ruiz reporting
http://www.forbes.com/sites/rebeccaruiz/2013/06/21/advocates-fear-va-changes-to-gulf-war-illness-research-panel/
PHARMA & HEALTHCARE
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6/21/2013 @ 1:17PM |22 views
Critics Concerned Over VA's 'Sweeping' Changes To Gulf War Illness Research Panel
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Many veterans with Gulf War Illness see the past two decades as one battle after the next.
First, they began experiencing chronic unexplained symptoms like fatigue, joint and muscle pain, and headaches following their service in the Gulf War. Then, the Department of Defense denied for years that soldiers had been exposed to chemical agents – until the agency reversed itself and acknowledged that, in fact, some may have breathed the nerve gas sarin after American forces destroyed an ammunition depot in Khamisiyah, Iraq.
The government, critics say, did a poor job of researching causes and treatments for the disease, attributing its symptoms to the effects of wartime stress. In 1998, as a counter-measure, Congress created an advisory committee to provide rigorous oversight of research conducted by the government, particularly the Department of Veterans Affairs. For the past decade, that committee has reviewed scientific literature, worked on a strategic plan to treat Gulf War Illness, and published comprehensive reports (PDF) on the disease’s origins and possible avenues for treatment.
Now advocates say that recent changes to the committee’s charter approved by VA Secretary Eric Shinseki strip the panel of its independence and its mandate to press the federal government to develop treatments.
“The [research advisory committee] was intended to be an independent body that provided an accountability check on the federal government,” said Anthony Hardie, a Gulf War veteran and member of the panel since 2005. “Collectively, these changes are sweeping.”
In the 2010 charter, the committee’s “guiding principle” is described as ensuring that government research on Gulf War Illness ultimately improves the health of sick veterans, but that language has been omitted from the new document. The charter also leaves out a sentence that charged the panel with assessing the “overall effectiveness of government research to answer central questions on the nature, causes and treatments for health consequences of military service…during the 1990-1991 Gulf War.”
In addition, the Office of the Secretary no longer supports the committee. Instead, the Veterans Health Administration’s Office of Research and Development now has this responsibility, which has traditionally involved determining the budget and providing support staff. This change, Hardie said, means the committee will be under the auspices of the very staff it is designed to scrutinize. Finally, VA has announced that is not renewing the appointment of half of the committee’s members, and it is removing its longtime chair next year.
Dr. Robert Jesse, the VA’s principal deputy undersecretary of health, said in ablog post Wednesday that revisions to the charter were made for administrative purposes after a review in October 2012. Jesse applauded the research advisory committee’s work: “Since its inception, the RAC has been the catalyst for change and unquestionably guided VA to deliver on its core mission to care for our Nation’s Veterans. They have my greatest confidence in continuing that mission, and we look forward to working with them to achieve our mutual goals.”
Yet, Hardie, along with other committee members and Gulf War veterans, are suspicious of the timing. Last year, the committee said in a report that it had “no confidence” in VA’s ability to “formulate and execute an effective VA Gulf War illness research program.” In March, members of the panel, including Hardie, testified before Congress about VA’s alleged failures in commissioning rigorous Gulf War Illness research. At the same hearing, a leading epidemiologist and former VA investigator accused the agency of suppressing important data on Gulf War Illness research.
In a letter to Jim Binns, the chairman of the advisory committee, VA interim chief of staff Jose D. Riojas said that the group’s work should focus on proposed research studies, plans and strategies, and not on “being a ‘watchdog’ for all Gulf War related work at VA.” He noted that VA “has robust oversight and investigation capability to address alleged wrongdoing.” On Monday, Riojas spoke to the committee in Washington, D.C.; Hardie and two other Gulf War veterans walked out in protest.
Rep. Mike Coffman, R-Colo., chair of the House Veterans’ Affairs Subcommittee on Oversight and Investigations and a Gulf War veteran, is skeptical of the changes.
“I don’t think there’s anything procedural about it,” he said of the new charter. “I think the [committee] has been able to report to Congress on what the Veterans Administration has done or hasn’t done and VA is taking action against that. I worry that voice will now be gone.”
Coffman called the quality of VA’s Gulf War Illness research “alarming.” An inquiry earlier this year by the subcommittee on oversight and investigations found that VA infrequently publishes its research and has regularly spent funding for Gulf War Illness research on important but unrelated projects, including a brain tissue bank for patients with Lou Gehrig’s disease.
In his blog post, Dr. Robert Jesse touted a nearly $2 million increase – to $7.3 million –for research this year and noted that it had funded all proposals that met “scientific and quality merit review standards.” He also said that VA has “rejected the notion the symptoms result from mental health issues like post-traumatic stress.”
While VA is set to move forward with the new committee charter, Coffman said he and other legislators are considering a bill that would address VA’s changes.
“There were years they weren’t doing research,” Coffman said of the government’s response to Gulf War Illness. “I think that there’s just a history of well-founded distrust by Gulf War veterans of the actions of the VA in addressing this issue.”