Hundreds of veterans with terminal brain cancer and their families were close to being fast-tracked toward millions of dollars in government benefits and compensation -- before a White House decision this fall prevented it.
The White House denied a recommendation from the Department of Veterans Affairs that would establish a connection between brain cancer and service in the Persian Gulf War, fast-tracking VA benefits and compensation. As it stands, veterans and families have the burden of proving the connection - a process that can take years and require hundreds of pages of military and medical records.
"What it means is years more of struggling," said Ron Brown, president of the National Gulf War Resource Center. "I just find that unacceptable. It's like leaving veterans and their families behind."
'An extreme burden'
Laura Edwards, 54, knows the struggle of trying to obtain VA benefits.
After a recent phone conversation with a VA representative, she felt so frazzled she "couldn't remember my own phone number," she said.
Her husband, retired U.S. Air Force Sgt. 1st Class David Edwards, died at 53 of glioblastoma -- a form of brain cancer -- in 2013.
In the conversation with the VA that November morning, she had attempted to take another small step in a years-long process to prove her husband's brain cancer was a result of his service in the Persian Gulf War.
"It's really stressful," she said. "It's a real sappy, horrible day."
In 2015, the VA established a work group to decide whether there was a clear connection between brain cancer and servicemembers in Southwest Asia in 1990 and 1991, when troops were exposed to hazards such as oil-well fires and nerve agents.
David Edwards had worked on generators at U.S. bases in Saudi Arabia with the 323rd Civil Engineering Squadron. Her late husband used to talk about the chemical alarms going off at the bases, Laura Edwards said, and he said their superiors told them the alarms were false.
Later, studies would show that in some cases wind carried nerve agents from Khamisiyah in southern Iraq, triggering the alarms.
Laura Edwards, now living alone in small Warrensburg, Mo., submitted her first claim to the VA in 2014 but it was quickly denied.
According to a copy of that denial letter, she didn't provide enough supporting evidence.
She has struggled, even with help from Brown and a local veterans service officer. In the ongoing effort to make her case, Edwards recently arranged the exchange of about 170 pages of medical records.
If the VA determines that Edwards' death stemmed from his service, Laura Edwards would be eligible for dependency and indemnity compensation. Those payments go to survivors of veterans whose deaths resulted from a service-related injury or disease.
The current basic monthly payment is set at $1,254.19, or about $15,000 annually. For each child under 18, $310.71 is added to the payment.
Brown, a Gulf War veteran, served with three men in the 1st Battalion, 504th Infantry Regiment, who were later diagnosed with brain cancer, he said. As president of the National Gulf War Resource Center, he's heard from spouses, including Edwards, asking for help to qualify for compensation.
"It's very hard; there have been a very small number of veterans who have been successful at it," Brown said. "It places an extreme burden on the families."
Brown said he was optimistic this summer, when the VA work group stated that soldiers who served near Khamisiyah were at a higher risk of dying from brain cancer. The group proposed a rule allowing VA employees to automatically presume a connection when faced with a claim for compensation, said Dr. Ralph Erickson, a VA physician who led the effort and a Persian Gulf War veteran.
VA Secretary Bob McDonald backed the group's recommendation. But when it was sent to the executive branch for final approval, the VA was told there wasn't enough evidence, Erickson said.
"It was felt that at this time the data, the evidence are just not strong enough to really support a presumption," he said. "In the end, the decision was made by the executive branch that we need to do more research."
Before a federal regulation such as this one is established, it has to go through the president's Office of Management and Budget. The office did not respond to requests for comment.
"I was disappointed that we didn't get it," McDonald said at a public meeting earlier this month. "I was disappointed that we didn't get it for Gulf War veterans and their families, and I was disappointed because we had a great team of experts who put a tremendous effort together to see if we could put together a case and convince our partners in the White House that we should have a brain cancer presumptive."
The work group estimated that if the fast-track process were approved, about 400 veterans or their families would seek treatment and compensation within the first year, Erickson said.
Brown, who has worked closely with Erickson throughout the process, said the cost to the government for first year was about $14 million.
In comparison, the VA adopted a fast-track process in October for veterans who served at Camp Lejeune, N.C., when the base drinking water was contaminated. According to a VA analysis, the cost to the VA will be $379.8 million in the first year and more than $2.2 billion total over the next five years.
The group's full findings, with detailed cost estimates of a fast-track policy, were put into a report that is going through peer review, Erickson said. He said it would likely be published in the next few months.
Erickson reiterated that the cost would not have played into a decision to deny the recommendation.
"The reason this didn't make it to completion was the science itself was insufficient," he said.
But it's unclear how - or when - more evidence can be found.
Goal set for 2018
The VA has been studying the connection between brain cancer and Persian Gulf War service for over a decade.
In March 1991, U.S. forces destroyed chemical munitions at Khamisiyah, releasing nerve agents into the air. It's been reported that servicemembers downwind from the site were at twice the risk of dying from brain cancer than others in the theater.
Another study linked exposure to smoke from oil-well fires to a slight increased risk for death from brain cancer.
The VA has a 16-member research committee dedicated to illnesses among Persian Gulf War veterans. Just over a year ago, the group voiced concerns about the prevalence of brain cancer.
The new analysis built on what's already been found.
"We felt like we didn't have a good handle on exactly what the exposures were," Erickson said. "The Gulf War veterans who were in the thick of things would've had a whole variety of exposures."
After their recent proposal was denied, Erickson and McDonald said the VA would continue to look for enough evidence to get it passed.
Erickson said he couldn't provide a timeline for when the fast-track process could be proposed again.
McDonald spoke earlier this month about working with the National Academy of Medicine to create another work group. The next issue of the academy's "Gulf War and Health" report is planned for 2018, McDonald said, with the thought that getting a study into that publication would help boost the evidence.
"There's a mark on the wall; we would like to get this done before then," McDonald said. "This initial denial doesn't mean that the issue is finished. It just means we have more work to do."
McDonald is unlikely to be at the VA to see the goal through. President Barack Obama appointed McDonald in 2014, and as Obama prepares for his exit, the VA chief will likely be replaced soon with a new leader named by President-elect Donald Trump.
Searching for clues
In addition to uncertainty because of political change, the science is "limited," Erickson said.
This year marked the 25th anniversary of the end of the Persian Gulf War, and not enough data on environmental hazards were collected at the time of the conflict.
"One of the biggest challenges we have - the daily challenge I have - is oftentimes we've gone to war, and yet we have not measured things very well," Erickson said. "Our attention is drawn to fighting battles and being able to win those battles. We don't always have the ability to say, 'Yes, there's an exposure, here's who was affected.'"
A similar situation occurred with Vietnam veterans and the herbicide Agent Orange, which the U.S. used from 1961 to 1971. The health effects to veterans were not fully understood until years later, and more illnesses continue to be linked to the herbicide.
It wasn't until 1991 that the Agent Orange Act put into place a fast-track compensation process such as the one the VA is seeking for Persian Gulf War.
The VA and the Department of Defense are attempting to create a system in which data on environmental hazards could be collected and cataloged in real time.
"That's the future, where we want to go," Erickson said. "But the Gulf War occurred now 25 years ago."
More veterans may have to be diagnosed with brain cancer before more is known about the connection to service in the Persian Gulf War.
Veterans who served Southwest Asia in 1990 and 1991 are aging into their 50s and 60s - the average age for developing brain cancer.
"We need to tease out how the experience of veterans, and if they have more brain cancer, the same amount or less than the general population," Erickson said. "Science is like this river that continues to flow. We will continue to gather information from that river as new breakthroughs become available. There's always new information."
While researchers continue their attempts, families are waiting, said Brown, who speaks with a sense of urgency about the issue.
"The families deserve to be taken care of," he said.
Searching for acknowledgement
Laura Edwards buried her husband on March 30, 2013, which would've been their 11th wedding anniversary.
She called the VA for the first time one year later, not realizing at first that she was eligible for compensation, she said.
She called to tell the agency her suspicions that David Edwards' death was caused by his military service, in case anyone was keeping track. She wanted an acknowledgement that he died as a result of fighting for his country.
Now, two years after that first phone call, Edwards doubts it's worth it at times.
"Sometimes I wish I had never even started this," she said. "It's dredging it up all the time. It's like I can't get any peace from it. I'm getting to the point where I want to just forget it."
But then, she said, she remembers her husband, whom she described as extremely proud of his military service and hardworking until the end.
"He wasn't a complainer," she said. "He was such a strong man. He loved his country. He did not deserve to die the way he did. What I want is justice."