“Their struggle serves as both a portender of what the Post-9/11 burn pit veterans of Iraq and Afghanistan would face, as well as a repeat of what the Vietnam veterans continue to battle: a history of denying there is a problem, creating obstacles to research, and denying claims until another group of veterans dies off. Veterans advocates call this process “delay, deny, until they die.”
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"The science is clear and treatments are available now. Everyone—advocates, researchers, and officials alike—say there’s reason to expect even more progress, and more solutions, soon. But for decades, the Department of Veterans Affairs has focused on data collection that experts say will not increase health care outcomes and has ignored study after study as 250,000 veterans continue to suffer symptoms that make it impossible to lead healthy, pain-free lives.
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"As veterans returned to Fort Devens, Massachusetts, after Operation Desert Storm, Kimberly Sullivan started seeing symptoms that startled her:
Stomach problems. Headaches. Extreme fatigue. Muscle pain. Memory problems. Joint pain. Respiratory issues.
“Our leadership, the current administration, is meeting with senior leaders and is interested in military exposures,” Rumm said. He also said that, at his level, “We’re committed to doing whatever needs to be done.”
“Here are our veterans in their 20s and 30s, trying to come back from a deployment and trying to go back to full-time civilian work and go to school on the GI Bill and raise a family,” Sullivan said. “And they should have been able to do all that—and more—at that age. And it was very clear that many of our veterans were having difficulty with that.”
Sullivan worked with veterans as a neuropsychiatrist through Boston University’s partnership with Veterans Affairs. The doctors working with veterans knew from the beginning that something was wrong—they just didn’t know what it was, she said.
“Initially, the question was, was this a stress-related disorder—was this post-traumatic stress disorder?” Sullivan told The War Horse. “And it became clear relatively quickly that that was not the case.”
The doctors, as well as veterans’ advocates, could also see, almost immediately, that having a lot of symptoms and a lot of possible causes would make it easy to obfuscate the real issue—and avoid paying for the disability benefits of as many as 250,000 troops.
The problem seemed obvious, even to a group of scientists known for not jumping to conclusions. In the early 1990s, as the Boston researchers and doctors talked to sick veterans, they started to see a trend: chemicals, specifically acetylcholinesterase (AChE) inhibitors.
“Our Gulf War veterans really had a unique toxic soup of exposures—of similar types of chemicals,” Sullivan said.
With each slather of cream or pill taken, the troops increased their doses.
Sullivan, with Roberta White leading a team as the head of the neuropsychology programs at Boston University and VA Boston Medical Center, began to look at whether the chemicals could be causing the illness.
“We’ve come to see that Gulf War illness is related to these exposures,” Sullivan said.
Acetylcholine sends the messages that tell your smooth muscles to contract, your vessels to push blood, your tears to flow, and your heart rate to slow. It also makes sure food moves through your gut, enables you to learn and remember, and sends messages to the muscles that control the airways in your lungs.
The stress of battle, wonky immune system response after exposure to smoke and dust, and high heat levels may have increased the problems for some people, but ultimately, those factors did not matter: The research shows exposure to AChE inhibitors causes the series of symptoms experienced by Gulf War veterans, Sullivan said.
When the researchers realized those acetylcholine messages were not getting through for veterans who had served in Desert Storm, Sullivan said they coined a term more recent veterans may be familiar with: toxic wounds.
But even though the researchers say they suspected early on what caused Gulf War illness, three decades’ worth of frustrations followed, reading like conspiracy theories from a crime novel: misleading claims from Veterans Affairs that the veterans’ issues were psychological rather than physical; VA officials’ refusals to look at animal research or research that didn’t include a defined dose of toxins—a requirement researchers classify as impossible; the government releasing the information five years after the fact that a cloud of sarin gas had made its way to the troops; and, to this day, an acrimonious relationship between advocates for the sick veterans and VA that includes battles over even the name of the series of ailments that struck the veterans: Gulf War illness.
War planners for the United States projected as many as 40% of their troops would be lost in battle. The losses were much lower: 148 Americans were killed in action, with another 145 losses to nonhostile actions, such as vehicle accidents. But as veterans returned home from the Gulf War in 1991, as many as one-third of them—approximately 250,000—developed symptoms of Gulf War illness. There was no known cure, just lives filled with bouts of pain and exhaustion so extreme that some veterans spent those days in bed. There were rashes and debilitating headaches. There were brain cancers.
Gulf War illness has similarities to fibromyalgia and chronic fatigue syndrome. And, just as people who deal with those illnesses have fought for validation, sick veterans continue, 30 years later, to fight to prove service connection for disability benefits for an illness that, until recently, couldn’t be physically seen, with 80% of their claims being disapproved, as well as fighting to show the symptoms are physical—not psychiatric.
Their struggle serves as both a portender of what the Post-9/11 burn pit veterans of Iraq and Afghanistan would face, as well as a repeat of what the Vietnam veterans continue to battle: a history of denying there is a problem, creating obstacles to research, and denying claims until another group of veterans dies off. Veterans advocates call this process “delay, deny, until they die.”
Still, just as with the medical advancements made for war—prosthetics and blood-staunching bandages and brain injury tests—the treatments, some already in use, for Gulf War illness may also help those who suffer with everything from fibromyalgia to multiple sclerosis to Alzheimer’s, all of which may be tied to brain inflammation.
And the advocates, researchers, and VA officials all say it’s time to move forward: to fix the disability claims issue, to celebrate research that will soon produce more treatments and possibly biomarkers for diagnosis, to work together for future generations of veterans.
After years of funding in spite of the fighting, new research is coming that may provide relief for veterans sick with Gulf War illness, as well as for other diseases where both the cause and the cure remain mysteries.
And as a new administration settles into the executive offices, some see hope for veterans past and future in a president who believes his son may have died from a war-zone exposure, as well as politicians from both sides of the aisle who say they support research and benefits for veterans exposed to toxins in war zones.
“I do think the current administration has a vested interest given that they personally have suffered from military toxic exposures and losing family members,” Sullivan said. President Joe Biden has said he wonders if his son Beau’s glioblastoma, as well as his death, came about after exposure to burn pits while he served in the Army. “I think that brought it home, that this is an issue that really needs to finally be taken much more seriously,” Sullivan said.
That connection led to an election campaign plan that included making it easier for veterans to get disability benefits after exposure to burn pits or environmental toxins, as well as increasing research money by $300 million to look at both toxic exposures and traumatic brain injuries.
That commitment appears to have already seeped down.
“Our leadership, the current administration, is meeting with senior leaders and is interested in military exposures,” Rumm said. He also said that, at his level, “We’re committed to doing whatever needs to be done.”
And 30 years after a three-day ground war, Sullivan has more good news about treatments that can be used now by the hundreds of thousands of veterans sick with Gulf War illness."
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