ROANOKE, Va. -- From his small home office more than 200 miles from Washington, Ronald Brown has a direct line to top Department of Veterans Affairs officials, including VA Secretary David Shulkin.
In the time between bouts of illness and his many doctors' appointments, Brown -- a veteran of Operation Desert Storm -- can be found here, working at a laptop filled with scientific studies, written testimonies to Congress and veterans' claims for VA benefits. He's focused, sometimes working on multiple claims at the same time, pausing only to pat the two English bulldogs who lie at his feet or search through binders of documents on his overloaded bookcase.
In this room, Brown has become an expert on filing Persian Gulf War veterans' claims for VA disability compensation and health care. He and the two other veterans who make up the National Gulf War Resource Center intervene in cases all over the country, and are almost always successful at getting the VA to reverse decisions on rejected claims.
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The three-man operation holds seminars to educate veterans service officers with larger organizations, such as the American Legion and Veterans of Foreign Wars, and the trio is in constant communication with the VA.
Their work became more urgent this summer, after a Government Accountability Office report disclosed that the VA denies more than 80 percent of veterans' claims for Gulf War-associated illnesses. That's an approval rating three times lower than all other types of claims. Gulf War claims also make up 30 percent of the VA's inventory of backlogged claims, which is more than those from any other era.
The GAO has issued reports critical of the government's handling of Gulf War claims as far back as 1996.
After years of behind-the-scenes work, Brown is frustrated with the VA and Congress that not enough has changed.
"I figure the only way you can address the issue is if you're actually being invited to the table," Brown said. "But we feel what we've brought forth hasn't been addressed. At some point, something has to change. At some point, the words have to stop and the actions have to start."
His own battle
Brown was near Khamisiyah in southern Iraq in 1991, when engineers there destroyed ammunition containing nerve gas. He was an infantryman with the 82nd Airborne Division. He printed out a map showing his company's location at the time; a green dot indicated he was just southeast of the demolition site.
Brown remembers debris falling from the sky, and finding parts of the munitions around his base. Researchers have estimated at least 100,000 American troops were exposed to chemical warfare agents from the munitions dump.
He returned to the United States in 1991, and by then his health had begun to decline. He was diagnosed with fibromyalgia, irritable bowel syndrome, migraines and chronic fatigue.
By 2010, the VA accepted that his conditions were brought on by military service and started to pay for his health care.
It had taken him 13 years to prove his case.
"It was a slow, meticulous process. It was like getting water out of a rock," Brown said. "I went through many denials. Many denials."
Jim Bunker, president of the resource center based in Topeka, Kan., has been helping veterans with their Gulf War claims since 1994. He helped Brown get service-connected compensation for his conditions, and then recruited him to help other veterans.
"I finally decided I wanted to take some time to hopefully try to help other people, because it's not an easy process," Brown said.
Along with a third veteran ---Mike Jarrett, who lives in Virginia -- they work as volunteers and take on as many claims as they can.
While they're mediating between the VA and individual veterans, they are fighting a larger institutional battle: to change how the VA handles Gulf War claims in order to get more approved.
Earlier this month, Brown and Jarrett made a rare trip to Washington to make their arguments. They met with members of the House Veterans Affairs' Committee to offer solutions for getting more claims approved, including better and more frequent training for VA staff and clearer language to define which veterans are eligible.
They also sought support for more medical conditions -- including brain cancer -- to be recognized by the government as resulting from service in the Persian Gulf War.
Too many denials
Brown compared the fight to the struggle of Vietnam War-era veterans trying to connect their medical conditions to the herbicide Agent Orange.
"You would have figured we learned our lesson from our Vietnam War veterans and how they're treated by the VA," he said.
In 1994, Congress passed legislation allowing a "presumption" for Gulf War veterans with undiagnosed illnesses -- meaning they don't have to prove their illnesses were caused by military service.
Undiagnosed illnesses are a group of undefined and unexplained symptoms found in veterans of that era -- headaches, fatigue and joint pain and neurological, skin and respiratory issues.
One problem, Brown said, is that once a doctor makes a diagnosis -- even if veterans have received different diagnoses for the same issue -- they're no longer eligible for the presumption. VA medical examiners find it difficult to identify something as undiagnosed or unexplainable, the GAO report says.
The majority of Gulf War claims between 2010 and 2015 were from veterans with undiagnosed illnesses, and that was the type of claim that was most-often rejected.
Overall, the VA approved only 13 percent of veterans claims for undiagnosed medical issues during that period, according to the GAO report. Of the 58 VA offices nationwide that decide the claims, eight offices approved fewer than 5 percent of those types of claims.
One office in Muskogee, Okla., approved 70 claims and denied more than 2,000.
The GAO reported the same phenomenon 20 years ago. Between 1994 and 1996 - the first two years the presumption existed -- the VA denied 7,424 of 7,845 claims of undiagnosed illnesses in Gulf War veterans - an approval rate of 5 percent.
"It's a hot topic for a moment, and then it fades away and you don't hear anything about it until the next big report comes out," Brown said. "Then we talk about the same things we've already been discussing, then that dies down and fades away again. It's about as screwed up as a chicken-wire canoe."
"The legislation was done with good intentions, but it's not working. I think we need to scrap it and start over."
There are other ways that Gulf War veterans can get compensation and health care, but those are often denied as well.
An amalgam of unexplained chronic illnesses among Gulf War veterans, including fibromyalgia, fatigue and gastrointestinal disorders, was added to the list of VA presumptions in 2001. Nine infectious diseases were added in 2010. To secure benefits, veterans must have served on active duty in Southwest Asia after Aug. 2, 1990, and have an illness that falls into one of those categories.
From 2010 to 2015, the VA approved 29 percent of claims for chronic multi-symptom illnesses and 14 percent for infectious diseases.
Combining both categories, Gulf War veterans saw a 17 percent approval rate - 18,000 out of 102,000 claims.
Lack of training
The VA attributes the low approval rating to the complexity of Gulf War Illness, which complicates the claims process.
Brown says veterans contribute to the confusion by filing for conditions that aren't presumptive, and misinformation in the veteran community spreads rapidly.
"If you break that denial rate down, I think 60 percent of that falls on the veteran. Most veterans, they don't understand the procedures and regulations with the VA, and quite frankly I don't think the VA makes it that simple for them to," Brown said. "But on the VA side of this -- a tremendous amount of training needs to be done there."
In an official response to the GAO report, VA Deputy Chief of Staff Gina Farrisee said the VA would work to determine a single case definition for Gulf War Illness. The process is expected to take several years, and it's already been attempted once. In 2014, the VA spent about $2 million to fund an Institute of Medicine report on the issue. The committee couldn't determine a single case definition.
Melissa Emrey-Arras, who authored the GAO report, said there are other things the VA can do to clear up confusion. She found that VA medical examiners -- key in providing information for veterans' claims -- lacked training on Gulf War illness. The training was optional, and about 90 percent of them hadn't taken it.
Farrisee said examiners would go through training on Gulf War illness by November. The VA said earlier this month that all examiners were on track to complete the course by October.
Bunker has asked VA officials to have personnel trained specifically in Gulf War claims work out of one office. Right now, raters spread among 63 offices nationwide handle all types of claims.
"That way they can work [Gulf War claims] more often and [be] very familiar with how to do it," Bunker said. "Right now, they're spread out and some people may not be acquainted with them or understand."
Brown has asked that the House Committee on Veterans' Affairs increase its oversight and require quarterly or biennial reports on VA staff training on Gulf War claims.
Brown was critical of a hearing hosted by committee members in July addressing the GAO report. He said lawmakers missed opportunities to ask hard questions and showed little urgency about the issue.
"It was extremely frustrating to see a lack of understanding about the gravity of the situation that these veterans face," Brown said. "There's more they can do."
Following Brown's recent meeting with committee staff, he said he was optimistic there would be more accountability, and that there could be a potential legislative fix to the complexity of Gulf War claims.
Griffin Anderson, press secretary for Democrats on the committee, said lawmakers and staff have been meeting with veterans service organizations about the GAO report "to figure out the best way to address the issues."
Tiffany Haverly, communications director for the committee and its chairman, Rep. Phil Roe, R-Tenn., said committee members would continue to take input, but "no additional legislative action is planned at this time."
Working for change
Brown, Jarrett and Bunker handle claims from veterans all over the country. Brown recently worked on claims from California, Texas, Maryland, New York and Florida. Bunker has helped train service officers with Veterans of Foreign Wars, the American Legion and Disabled American Veterans, as well as smaller state agencies. He held a seminar about Gulf War claims in northern Wisconsin last year and will hold another in Tampa, Fla., in November.
Often, they help veterans figure out what kind of medical evidence or military documents they need to submit. But sometimes other types of errors come up.
In July, Brown handled a claim that was denied because a veteran misspelled the name of the country Qatar. The veteran spelled it "Quatar," which the VA said was "not considered part of the GW theater of operations."
Brown intervened, and the VA quickly reversed its decision, he said.
"I see a lot of stupid errors being made by everyone, all around," Bunker said.
Other cases are much more difficult.
In 2016, the VA attempted to create a fast track for hundreds of veterans with terminal brain cancer. The White House denied the VA's recommendation, citing a lack of scientific evidence.
Though the VA didn't succeed, it put out new directives advising health care providers to determine whether it's more likely than not that a veteran's brain cancer was brought on by hazardous exposure during the Gulf War. Doctors are now asked to provide a medical rationale for their decisions.
That made a difference for Laura Edwards of Warrensburg, Mo. She had been fighting the VA since 2014, attempting to prove the glioblastoma that killed her husband, David, a retired Air Force sergeant, was caused by toxic exposure.
In May, the VA denied her claim again, and she was ready to give up. She found Brown's group on Facebook, and he suggested she get a letter from one of her husband's doctors.
His neurologist wrote just a few sentences, saying it was likely that Edwards' brain cancer was caused by his military service. Laura Edwards sent the letter to Brown on July 10. A week later, she received a package from the VA, dated July 18, awarding her eligibility for dependency and indemnity compensation. Those payments go to survivors of veterans whose deaths resulted from a service-related injury or disease.
"I sat on my porch and read and reread it. I had my daughter read it," Laura Edwards said. "I'm still just stunned."
Brown quickly went on to get another widow's similar claims approved. But he doesn't believe that two wins are enough. He remains unflinching in his fight to have it declared a presumptive condition.
The issue was a priority for former VA Secretary Bob McDonald, Brown said. He wants Shulkin's administration to prove it's important as well.
"I haven't given up on it," Brown said. "I want someone [at the VA] to explain to me why they won't take this to the White House again. How much discussion has to take place before anything is changed?"
Continuing the fight
In his office in mid-August, Brown sorted through claims on his computer -- ones he had helped get approved and others he is working on. He printed pages and pages of documents from a well-used Epson printer and talked absentmindedly to his two English bulldogs, Tigger and Ms. Piggy.
A framed recognition of service in the 82nd Airborne Division -- originally belonging to McDonald, who gifted it to Brown -- marks the relationship between the two men. They both served in the same company, about 15 years apart.
When Brown looks up from his laptop out the window in front of him, he stares directly at the Blue Ridge Mountains. It's a nice spot, Brown said, and close enough to Washington for periodic visits to VA headquarters and Capitol Hill. Still, he and his wife and daughter are looking to move to a warmer climate because the cold worsens his chronic pain.
That won't affect his commitment to helping other veterans.
"I'll do what my health allows," he said. "I'll do what I can."