Thursday, April 25, 2013

Boston Globe: After two decades of waiting, Gulf War vets see new hope

Source: Boston Globe

After two decades of waiting, Gulf War vets see new hope

Posted by Christina Jedra  April 24, 2013 08:23 AM
When Edward Bryan, then a 35-year-old full-time firefighter, was called to serve in the Persian Gulf War in April 1991, he didn’t know he would come home to the US after 6 months with a slew of medical problems, including headaches, dizziness, gastro-intestinal problems, vision and memory loss, and hearing problems.

Like many Gulf War veterans, Bryan was exposed to nerve gas, pesticides, and oil well fires.

“It was a toxic dump,” said Bryan. 

ed.jpgNow 57 and living in Malden, Bryan is suffering from what is commonly known as Gulf War illness. He is among an estimated 175,000 to 210,000 veterans, out of about 700,000 troops who deployed, to return home with health problems. Many troops who served in the war were exposed to nerve gas, oil well fires and pesticides, and were given pyridostigmine bromide pills, an anti-nerve agent medication.

Bryan, like other veterans, has been waiting for more than 20 years without clear answers or effective treatment for his symptoms. He has gotten used to hearing officials from the US Department of Veterans Affairs assert that the symptoms are tied to psychological stress. 

But in recent months, several breakthroughs have given veterans new hope. New research into the cause and treatment of Gulf War multi-symptom illness is underway in Boston, and recently, a VA whistleblower stepped forward to expose what he says was a cover-up of evidence that Gulf War illness is neurological in nature. 

The recent developments have Bryan and other veterans hopeful that “we may be getting neurological care instead of psychiatric care from the VA,” he said.

Before he was sent to serve in the Gulf War, Bryan owned a house in Melrose, worked as a firefighter and was, in his words, “doing great.” After serving overseas, he lost his job and has been disabled by what he calls “white matter disease,” referring to deterioration in his brain.

Bryan said it has been difficult to navigate the VA to get care. “There’s no guidance, there’s no direction,” he said.

Despite his own illness, he tries to help other veterans deal with the VA, reaching out to them on Facebook and e-mail, or after meeting them at events such as hearings or parades. He said the lack of care has caused some veterans to self-medicate.
“They’re taking more street drugs [or] they’re drinking in excess because of the lack of treatment and care,” he said.

In recent months, there have been some signs that things could change. In March, Steven Coughlin, a whistleblower from the VA, testified to the House Committee on Veterans’ Affairs that the VA withheld information supporting Gulf War illness as neurological in nature.

“Over the past 10 years, there has been a wealth of studies that have shown that it’s very likely that it is neurological in nature due to neurotoxicity,” Coughlin, a former epidemiologist in the Office of Public Health at the VA, said in an interview. “And [yet] the supervisors that I had in the VA, they supported the psychiatric theory.” 

Coughlin participated in a VA study on Gulf War veterans and their exposure to pesticides, nerve gas, and oil well fires. The results have not been released, he said. The reason: “Anything that supports the position that Gulf War illness is a neurological condition is unlikely to ever be published,” Coughlin said in his committee testimony.

A number of studies have provided evidence that Gulf War veterans are suffering from neurological problems. 

A consortium of researchers, led by Kimberly Sullivan, a research assistant professor of environmental health at Boston University, has launched a massive $5 million study to test the theory that a chronic inflammation in the brain is activating brain and immune pathways to cause ailments such as joint and muscle pain, memory problems, fatigue, headaches and gastrointestinal distress. Prior studies have found a deterioration of brain ‘white’ matter in ailing Gulf War veterans. 

Robert Haley, chief of epidemiology at the University of Texas Southwestern Medical Center in Dallas, also has led research linking chemical exposures to neurological changes. Haley found evidence that pesticides, nerve gas, and pyridostigmine bromide pills damage the receptors for an enzyme in the brain, which leaves them unable to respond normally to nerve stimulation. 

When Haley published a study about abnormal brain function, “the government sort of came after us and tried to discredit us,” he said.

Coughlin believes that the VA is pushing psychological stress as the reason behind Gulf War illness because of a conflict of interest between VA’s research arm and the Veterans Benefits Administration, which must pay for treatment of any service-related health problems. VA officials have denied that they are thwarting Gulf War research, saying they are doing all they can to help veterans.

Sullivan said Boston is “leading the way, in terms of treatment trials . . . to try and help these ailing veterans.”  One trial at the Boston VA is testing a low-level laser therapy treatment, which may help with cognitive problems and fatigue. Another trial at the New England School of Acupuncture is using acupuncture to help with chronic pain. Sullivan is leading a treatment trial to test whether intranasal insulin helps with cognitive and other problems.

“This is something that … is very dear to our heart because we’ve been working with these folks for a very long time to understand what’s really happening,” Sullivan said. 

As researchers work to figure out the puzzle, veterans like Bryan struggle to get by. Some days, it’s difficult for him to leave his house, he said. 

“Sometimes if I’m not doing good, I’ll stay home,” said Bryan, who has a wife and two sons, the youngest of whom is also in the Army. “[I’ll] keep my feet up. I’ll try to relax. I go to bed early. Sometimes I stay in my pajamas.” 

Sullivan is hopeful that a treatment can be found.

“We think we’re finally getting to the point where the pieces are coming together,” she said. “We’ve waited a long time for this.”

This article was reported and written under the supervision of Northeastern University journalism instructor Lisa Chedekel, as part of a collaboration between The Boston Globe and Northeastern.

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