American Legion committee hears no simple solutions for complex conditions.
Doug Thompson, who as a Navy corpsman once spent three days trying to identify the dismembered body parts of children after a suicide attack in Afghanistan, says he would be a statistic today if not for the support of his wife.
George Carpenter, president and CEO of a biotechnology firm that uses brain waves and a database of 12,000 patient files to find the right mix of medicine for post-traumatic stress disorder and traumatic brain injury, does not understand why veterans should endure trial-and-error treatment when big data can produce better-targeted prescriptions and reduce suicides.
Dr. Jeanne Mager Stellman, the Columbia University epidemiologist who, with The American Legion, took on the federal government in the 1980s to prove the toxic effects of Agent Orange exposure in the Vietnam War, says there are no easy answers for PTSD and TBI treatment because trauma is difficult to define and affects people differently.
Each of the three presenters at Saturday’s meeting of The American Legion’s TBI/PTSD Committee in Indianapolis confirmed the group’s primary thesis that there is no magic pill to vanquish the psychological conditions faced by hundreds of thousands of wartime veterans whose 20-a-day suicide rate has drawn serious national concern. “There is nothing that we can do that is cookie-cutter,” committee chairman and Past American Legion National Commander William Detweiler said.
Thompson, board member and co-founder of the Ohio-based Summit for Soldiers, told the committee about the therapeutic value of outdoor “adven-therapy” and the healing power of camaraderie among mental injury sufferers, including, emphatically, their families.
Carpenter of California-based Mynd Analytics, which is building evidence through clinical trials to prove that cloud-stored brain-wave data from thousands of patients can help doctors prescribe the right medicine for veterans with PTSD and TBI, says “if we can crack this code, we can save lives.”
Dr. Stellman says a critical obstacle to treatment is defining the conditions. “When we say PTSD, we have no idea precisely what that means,” she explained. “All traumas are not equal. (PTSD) means different things under different circumstances. Being exposed to a trauma is going to affect different people in different ways. That’s what makes all these biological inquiries difficult.”
The Legion committee has advocated an individualized approach to include such alternative treatments as hyperbaric oxygen and equine therapy – whatever works best for the veteran – as well as expanded research into medical marijuana, which has been reported as effective for some patients.
Detweiler told the committee that a resolution about cannabis, which passed at the 98th American Legion National Convention last summer, drew international media inquiries. “The press response was quite interesting,” he said. “The important thing is that we are supporting research. We are into research, not advocating the recreational use of marijuana.”
Thompson said he has not tried marijuana or hyperbaric oxygen to manage his PTSD, but he has been offered multiple treatment plans from frequently changing mental health providers at Wright-Patterson Air Force Base in Ohio, where he has received his care, over the years. “My current provider is a civilian contractor. I am thinking, OK, stable care. Well, her contract came up, and it wasn’t renewed for four months. So, what did that do to my therapy? It switched again. Each provider has a different approach.”
Summit for Soldiers, he explained, is more than an outdoor recreation program for veterans. It’s a chance to get together to talk about what works and what does not for mental injuries. “Everyone has a war story. A lot of times, you present different treatment options that maybe someone else’s provider hasn’t thought of. The camaraderie, the talking it out, helps immensely.
“When we do these outdoor activities, you have a physical and emotional ride. It’s very supportive. We try to reduce the day-to-day stress. We do something that a lot of the millennials do not like. We ask them to turn their cell phones in. They are allowed to check their messages once a day.”
“What I love about what Doug talks about is you do change your chemical structure with drugs, but you also change it with camaraderie,” Carpenter said. “We can measure that. That’s one of the great things about EEG (electroencephalography). It’s a cheap brain scan, cheaper than MRI or PT. It’s lower resolution, but you actually see physical changes. If it’s a service dog or camaraderie or a drug, your brain can actually change.”
He says that by measuring outcomes based on a variety of stimuli and thousands of variables, an individualized plan can keep veterans in treatment longer and prevent suicides.
“The dominant treatment for most of these disorders is medications,” Carpenter said. “The dominant way to administer that treatment is trial and error. You try a medicine, and the patient either has a side effect or reacts badly, or they respond. At some point, you decide if it’s not working and try something else.”
He said patients in trial-and-error treatment usually don’t complete their programs. Those in clinical trials who have used Mynd Analytics data-driven therapies are staying with their programs at two and a half times the rate of those who typically meet with a doctor for an evaluation, get a prescription and give up. Carpenter said the Mynd Analytics program has also shown substantially reduced suicidal ideation. “If you stay in treatment, you’re much less likely to commit suicide.”
The model for data-assisted treatment, he told the committee, came from childhood cancer physicians who decided to pool their findings in the 1970s. At that time, Carpenter explained, “it was a death sentence. It was 90 percent fatality. The doctors said, ‘You know what, instead of practicing in our silos, let’s make sure that by law that every kid’s data goes into a registry.’”
Through the registry and regular meetings to share outcomes, doctors were able to cross-reference effective treatments based on unique cancer types and, says Carpenter, “we’re now at 90 percent cure rate. It’s a miracle. The idea that that works in one part of medicine and yet it hasn’t been applied to another part of medicine, that’s really what drove us. Can’t we do the same thing? Create a large registry? So we did, and we patented it.”
Dr. Stellman shared with the committee research into connections between PTSD, TBI and depression with later diagnoses of Alzheimer’s disease, dementia and cognitive impairment. She also expressed frustration about the lack of research overall into PTSD treatment even though more than 30 years have passed since it was first accepted as a service-connected condition by the Department of Veterans Affairs. “Everybody has a favorite theory or favorite approach,” she said. “We do not have definitive data yet.”
Carpenter is certain the data-driven approach will produce better results than trial and error. “One of the best ways we think there is to honor veterans is to not give them the wrong drugs. Our technology, at its core, does that. It’s inevitable that this is going to work. We’ve proven that in clinical trials. The question is, will it take 17 years to adopt, or will it take two or three years to adopt? And if it’s 17, how many people will we lose because there wasn’t the courage in the bureaucracy to make it happen?”
“We need help,” Thompson told the committee. “My generation, and the younger generation, we’re not very good at waiting for things to happen. We want to get it moving. The biggest problems we are fighting now are the unseen injuries.”
He also said successful treatment and suicide reduction depend on better understanding by others. “We want to get the community involved. The stigma surrounding PTSD is terrible.
“The unsung heroes are families and the social network. Veterans have responsibilities, too. It is in no way shape or form society’s fault. There has to be a personal responsibility. Every step of the way is difficult. You have setbacks. You have potholes. They come up. How strong that (family) member is and his support group can weigh heavily on whether it’s a successful treatment, or they never get past it.”
The outdoor therapy of Summit for Soldiers – which includes hiking, bicycling, rafting, camping, mountaineering and other activities – he explained, helps reduce the stigma. “If you say, ‘I’m going to mental health to talk to my therapist,’ what does that automatically assume? Well, not stable. But if you say, ‘I’m going camping for the weekend or whitewater rafting,’ what does that say? That sounds like a fun time. That’s how you get people to build that positive network.
“My wife and I have been married for 28 years. I can honestly sit here and tell you that if it was not for my wife, I would be one of those statistics. The aggravation of getting care, the aggravation of people understanding, having to rehash your stuck point or the issue that you cannot get past, is difficult. And then you add into it, ‘We’re going to throw meds at him.’ Meds are not necessarily the end-all, be-all. Family is key.”
“We are complex organisms,” Dr. Stellman said. “We live in a complex world. We react to things in a complex way.”
She said – and the other presenters concur – that the kind of connections veterans make through The American Legion, VA Vet Centers, Summit for Soldiers and other groups can make differences for individuals, just as the childhood cancer doctors discovered and neurological researchers today are arguing – that it takes many collaborators and supporters to address a complicated problem for which no single and clear solution has yet been found.
- Veterans Healthcare