A local veteran who struggles with the pain of a traumatic brain injury is in Washington this week, lobbying members of Congress on behalf of himself and others like him who are dealing with poorly-understood headache disorders.
“It’s quite the trip. I drag my bottle all over Capitol Hill, because oxygen is life-saving for cluster headache patients” Bebee said, motioning to the oxygen bottle he relies on for relief.
This will be Bebee’s third trip to Washington as a representative for the The Alliance for Headache Disorders Advocacy, he said.
Aside from an injection that is also used for migraines, oxygen is the only FDA-approved “abortive” for treating Bebee’s symptoms, he said.
“There is no cure, and there is no FDA-approved preventative that works,” he said.
But the lack of treatments for — or even understanding of the causes behind — headache disorders mainly comes down to a lack of research, Bebee said.
Even the treatments that are approved by the FDA are not covered by federal programs such as Medicare, Medicaid or the Veterans Administration.
Bebee said that comes down to a lack of research that shows their effectiveness, but with a limited number of people suffering from headache disorders, there is little economic motivation for anyone to pursue such research.
As part of his advocacy on Capitol Hill, Bebee hopes to help find funding for the research that could not just ease the pain of people like him, but even save lives.
“They don’t call them suicide headaches for nothing,” Bebee said.
“I mean, there’s a knife in your — it makes you feel like there’s a knife in your temple, and somebody’s doing this,” he said, making a twisting motion.
A barracks incident
For Bebee, it all started in 1979, while he was stationed in Germany. He came off duty one night, and was assaulted by a man who was staying in Bebee’s barracks as a holdover.
Bebee had to have his jaw wired together and went through physical therapy after the attack.
But, even though he has had experts weigh in on his behalf, he has struggled to get the VA to recognize that the Germany incident is related to his ongoing struggles with both migraines and cluster headaches.
In the summer, he deals with migraines. When the weather changes in the winter, he has to deal with cluster headaches, Bebee said.
In September 2014, Brian McGeeney -- an assistant professor of neurology at Boston University School of Medicine -- wrote a letter for Bebee to the VA, explaining that the trauma Bebee suffered could cause the pain he deals with. The letter also notes that Bebee first complained of headaches related to the incident beginning in 1980.
However, it wasn’t enough for the Veterans Benefits Administration, and they requested new evidence.
“So, the new evidence is coming from this new TBI research,” Bebee said.
But that research will likely cost millions of dollars, he said. Without federal funding, it’s unlikely that the veterans and civilians who suffer with chronic headache disorders will see any change in the near future.
And that’s what takes Bebee and other members of The Alliance for Headache Disorders Advocacy to Washington.
“It’s all very political,” Bebee said of making sense of all the committees and their members. “I don’t play politics, I don’t play partisan politics. We’re all Americans and we all have to fight together.”
In addition to advocating for research, members of the Alliance will also be talking with administrators who oversee Medicaid and Medicare, advocating for the federal programs to pay for oxygen as treatment for chronic headache disorders.
Right now, federal officials have declined to cover the cost of oxygen treatment without a multimillion dollar study that shows it is effective, Bebee said. “What oxygen oxygen company is going to put up $40 million for a prevalence of .01 percent of the population -- this is rare.”
Living with pain
Though Bebee has had headaches associated with his 1979 injury since almost immediately after it happened, it has gotten worse with time.
At first, he could work, and was even an associate steal inspector for the Golden Gate Bridge in San Francisco.
Until around 2006, his headaches were episodic. But, then he began to deal with chronic migraines.
“As an episodic, I could work still, and I could function somewhat, and use meds and use my oxygen,” he said.
But by 2007, Bebee had to walk away from his career.
“There’s the immediate attack, and then there’s the after-effect of it. It wears you down. You don’t get sleep,” he said.
“On any given day, you become unreliable, and a safety issue,” Bebee said. “I mean, when you’re 700 feet in the air, that’s a safety issue.”
And Bebee, who originally came from Lewistown, Montana, came back home, staying for a time with his sister in Troy.
While he was working, Bebee had good insurance and was able to manage his headaches somewhat. He tried to find jobs with insurance in Montana, but had struggles finding both a job he could work and that had the insurance he needed to be able to keep working.
“Finally I said, enough is enough. I have to file (with the VA),” he said.
That was 2010. It took almost five years and the intervention of then Senator Max Baucus before Bebee would see any progress with the VA.
Having been involved in online support groups for those with headache disorders since around 2002, advocacy became a reasonable next step for Bebee.
“It is a fight for my life, so it became my life,” he said.