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Top VA official questions use of term 'Gulf War illness'

Undersecretary for benefits said name change would be 'limiting'

By Patricia Kime
Military Times Staff writer

After the Institute of Medicine in March recommended using the term “Gulf War illness” to describe symptoms affecting more than 200,000 Persian Gulf War veterans, a top Veterans Affairs Department official expressed concern that such a change would imply a direct causal link between service in the 1990-’91 conflict and long-term illness.

That potentially explosive news was contained in an email sent by an IOM staffer to panel members who made the recommendation, including chairman Dr. Kenneth Shine. A copy was obtained by Military Times through a third party and later verified as genuine.

In the email, the IOM staffer said Allison Hickey, VA’s undersecretary for benefits, questioned the use of “Gulf War illness” rather than the VA-favored “chronic multisymptom illness” in a briefing on the report, “Chronic Multisymptom Illness in Gulf War Veterans.“

Hickey “was concerned that changing the name from CMI to GWI might imply a causal link between service in the Gulf and poor health which could necessitate legislation for disability compensation for veterans who served in the Gulf,” according to the email.

The statement appears to confirm what many ill Gulf War veterans have long suspected: VA has dodged references to Gulf War illness and research into the condition because officials fear a flood of new disability benefits claims and costly payouts — greatly complicating VA’s highly publicized goal to eliminate its backlog of benefits claims by the end of 2015.

Further fueling some veterans’ suspicions: Why was Hickey, VA’s top benefits official, weighing in on what is, at its core, a health issue?

“If this is true, this is extremely disappointing. Until this is recognized for what it is — Gulf War illness — it’s unlikely that any solutions will be found,” said Diane Zumatto, AMVETS national legislative director.

But VA insists Hickey’s comments had nothing to do with money. Rather, according to VA spokesman Drew Brookie, Hickey’s concerns were that the phrase Gulf War illness might be too restrictive, excluding vets from other eras with similar symptoms.

Hickey “asked about limiting the naming of the conditions to one conflict when they could be experienced by any number of veterans from multiple conflicts. ... VA currently recognizes that Gulf War veterans are experiencing these symptoms, yet they are also being experienced, based on the IOM report, by veterans of the current conflicts, as well as veterans deployed elsewhere,” Brookie said.

Veterans of Operations Desert Shield and Desert Storm often have butted heads with VA, which they say does not recognize their illness as a physical ailment related to military service and has undermined research that might prove a link between the conflict and disease.

According to VA, three illnesses are presumed to be related to Persian Gulf service: medically unexplained illnesses; some infectious diseases; and amyotrophic lateral sclerosis, or Lou Gehrig’s disease.

With the listing of “medically unexplained illnesses” as a presumptive condition, most Gulf War vets with associated symptoms — fatigue, cognition issues, musculoskeletal problems, gastrointestinal issues, breathing problems and neurologic concerns — may already be eligible for compensation.

But getting a claim approved for a medically unexplained illness is tough. As of 2011, the last time VA published statistics on claims for undiagnosed illnesses among Gulf War vets, 20,069 claims had been approved while 16,725 were denied.

VA did not provide updated data by press time.

“It’s been a frustration all along. We’ve had to fight to get care, fight to get a research advisory committee, we’ve had to go to civilian doctors to try to get answers,” said Denise Nichols, a Gulf War veteran and advocate.

The past year has seen continued sparring between the VA and Gulf War veterans. In June, VA made changes to the Research Advisory Committee on Gulf War Veterans Illnesses that led to the removal of all but one of its board members.

VA also has invested in research that looks into stress as a possible cause, which doesn’t sit well with physically sick vets.

VA research was called into question in May, when former researcher Stephen Coughlin testified that VA hid or manipulated data and results. The VA inspector general later cleared the department of all but three of the allegations.

House lawmakers in March introduced legislation to restore the advisory committee’s independence and promote research.

“It is well past time for officials at the VA to focus on identifying veterans who may be affected, instead of trying to sow doubt about the disease’s existence,” said Rep. Phil Roe, R-Tenn., a physician who has pushed for congressionally directed research into Gulf War illness.

Dr. James Baraniuk, a prominent researcher on Gulf War-related illnesses, agreed.

“I was not aware that VA was caring for veterans of other campaigns using the terminology CMI,” Baraniuk said, referring to Hickey’s comments. “What diagnosis code do they use? Is there a CMI diagnosis and treatment statement, guidance, or algorithm within the VA?”

In a written statement, VA spokesman Drew Brookie said the department agrees that “there are health issues associated with service in the Gulf War, and is committed to ensuring Gulf War veterans have access to the care and benefits they have earned and deserve.”

Nichols, whose symptoms include joint pain, fatigue, cognitive issues and chemical sensitivity, said that if VA was truly concerned, it would have changed its policy a long time ago.

“It’s a shame VA cannot be proactive. It’s a shame we have gone through 23, 24 years of this. They have the authority to fix this and they haven’t. Most of us feel betrayed,” Nichols said.