Helping Veterans with Injuries You Can’t See

By: Sheryl Flatow Posted on: Fall 2013


Lynn Santosuosso was an instructor in the Army Reserve when she volunteered to serve in the Gulf War. She was overseas for six months, and was exposed to nerve agents and chemicals while stationed near King Khalid Military City in Saudi Arabia. When she came home in June 1991, she was uncharacteristically angry, antsy, and unable to sleep. Released from active duty, Santosuosso returned to her reserve unit and also went back to work at her full-time job. Her anger turned into rage, and she was so depressed that there were mornings when she couldn’t get out of bed. “I eventually quit my job, moved through a substantial amount of my savings, started drinking more, and sowed some wild oats,” says Santosuosso, who left the military in 1997 when her enlistment was up. “It was like an avalanche.”

New symptoms occurred, including difficulty breathing, memory lapses, gastrointestinal problems, and cognitive issues. She had suicidal thoughts. Friends kept urging her to get herself checked out. In 1996, a physician at the US Department of Veterans Affairs (VA) in Manchester, New Hampshire, diagnosed Santosuosso with Gulf War illness, but told her “it cannot be documented as such in my records, because the VA would not take the term as a legitimate diagnosis.” It wasn’t until 2007 that Santosuosso learned she also had post-traumatic stress disorder (PTSD); the diagnosis was long in coming because she had never disclosed her mental and emotional problems, nor the extent of her drinking. “I was afraid of the stigma,” she says.

That’s a common concern of many veterans, who too often let PTSD go untreated. And though Gulf War illness was officially acknowledged as real in 2008 by the Department of Veterans Affairs, the consensus among veterans and those fighting on their behalf seems to be that help remains elusive. “It’s still difficult to get any VA to put on paper, ‘This person suffers from Gulf War illness,’” says Santosuosso. “That’s why there are a lot of angry veterans. I don’t know anyone who has received benefits from the VA and a disability rating under the term Gulf War illness. We’re not taken seriously and we can’t get help.”

Thanks to work being done at SPH, help might be on the way. The School has a long, mutually beneficial partnership with the VA and has been committed for many years to research designed to improve the care of veterans. In fact, Santosuosso took part in a 1996 SPH study on Gulf War illness. Now, several current studies have the potential to lead to breakthroughs in the treatment of both Gulf War illness and PTSD.

Legitimizing Complaint

Of the 700,000 people deployed in the Gulf War, between 25 and 30 percent—or some 210,000 veterans—have had chronic health problems over the last 22 years. Their wide- ranging, seemingly disparate symptoms include fatigue, joint muscle pain, headaches, concentration and memory problems, gastrointestinal distress, and skin rashes.

Much of what we do know about Gulf War illness is the result of work done by Roberta White, professor of environmental health and associate dean, research. In one study, she linked pesticides to Gulf War illness; in another series of studies, she used brain imaging to reveal that people in the Gulf who were exposed to the nerve gas sarin had evidence of brain damage. “The higher the exposure, the more changes we see in the white matter of their brains,” says White. “So we know the cause of Gulf War illness: exposure to mixed chemicals. The question is, what did these do to the body and how did that produce Gulf War illness? What we’ve done up to this point in our research at BU has been to legitimize these veterans’ complaints as a physical ailment. That has led to the ill- ness being acknowledged as a reason for disability. We are now working on systematic research on treatment.”

Kimberly Sullivan, a research assistant professor who trained with White, is currently leading an interdisciplinary team of researchers from a consortium of institutions in a four-year, $5 million study of 300 veterans, to learn whether chronic inflammation in the brain is the trigger for the illness. “This study is designed to assess whether the chemicals Gulf War veterans were exposed to may have kicked off a process that causes damage to neurons that then continually activate the immune cells in the brain called microglia,” says Sullivan, who runs, along with White, the congressionally directed Research Advisory Committee on Gulf War Veterans’ Illnesses, which oversees research into the illness in the VA. “This can lead to inflammation, muscle pain, headaches, fatigue, and concentration problems by causing a continuous activation loop between the brain and the immune system.”

Finding a Treatment

Sullivan is also working on two additional studies—companion pieces, in a sense, to the larger one. All three are funded by the Department of Defense. The second four- year study, done in conjunction with the Boston VA, the Bronx VA, and Mount Sinai School of Medicine, is a treatment trial based on the premise that inflammation will prove to be the mechanism that triggers Gulf War illness.

Veterans will be given intranasal insulin, a remedy that’s been found, in small studies, to be effective in treating Alzheimer’s disease. “It’s helpful in reducing neuroinflammation, the signaling of those chemical messengers, and it’s been shown to improve memory and attention,” says Sullivan. “It also modulates cortisol levels, which have been shown to be altered in Gulf War veterans as well. We’re really excited about this trial, because if we can show in the initial study that the mechanism really is inflammation, we hope that this could be a viable treatment for multiple symptoms of Gulf War illness.”

The third study, a collaboration between SPH and the Boston VA, is a survey of a large cohort of Gulf War veterans that came through Fort Devens, an Army training and reservist institution in Massachusetts. This study aims to get a clearer picture of symptoms and how they change over time. The veterans have been followed and periodically assessed since shortly after the war. “It will help us determine a good case definition,” says Sullivan. “That’s an ongoing problem: people are using different definitions for Gulf War illness right now. What we’re trying to do with these new studies is get these objective markers so that we can say, ‘You have this marker, therefore you have Gulf War illness.’ I think we’re close to understanding the cause. Then we can develop treatments.”

Getting Help—From the Couch

For veterans with PTSD, the treatments already exist; the problem is, vets often don’t seek help. Symptoms of PTSD include flashbacks, nightmares, and eruptions of anger, often exacerbated by drinking. Fifteen years after the end of the Vietnam War, roughly 15 percent of veterans—500,000 people—still had PTSD. Even after more than a decade, there’s no definitive data on the most recent operations in Afghanistan and Iraq, though screening rates suggest that between 20 and 30 percent of veterans have PTSD and/or a mild traumatic brain injury, which share many symptoms.

Yet many veterans suffer in silence, afraid of the stigma; afraid of looking weak; afraid of how it will affect future job opportunities. Another problem is logistics. Therapy requires a time commitment, which many veterans are unwilling or unable to give; often, they live so far from a treatment center that the trip would take longer than the session.

VetChange, a web-based initiative developed by the Boston VA, SPH, and BU School of Medicine, could soon give them the ability to get treatment in the privacy of their own homes. “Fewer than half of all veterans are actively enrolled with the VA,” says David Rosenbloom, professor and interim chair, health policy & management. “We built this program to be totally outside that system, so we can reach as many people as possible and give them anonymity.” Six hundred veterans of Operation Iraqi Freedom volunteered to take part in the initial randomized, controlled, yearlong trial on alcohol and PTSD, which was funded by the American Recovery and Reinvestment Act.

The program required a commitment of 20 minutes at the computer once a week for eight weeks. Participants were divided into two groups; the second group had to wait for the initial eight weeks to conclude before beginning. There was concern that people would drop out, but they didn’t—in fact, the results were as good as “regular” therapy, with a substantial number reporting a decline in drinking. “The waiting list group, or comparison group, was not only will- ing to wait, but did every bit as well as the initial group,” says Terence Keane, director of the Behavioral Science Division at the National Center for PTSD, and a professor and vice chair of the Department of Psychiatry at Boston University School of Medicine. “These are amazing findings.”

Keane and the rest of the team are now preparing a second study. “We learned a lot from the first study,” he says. “We want to make the next one more efficient and faster, and focus on the things that we think actually helped the most, like feedback and goal setting. We’re also hoping to use handheld devices and mobile platforms, so people will be able to participate wherever and whenever they want to.” The researchers have also been given $1.5 million in grants—from the Bristol-Myers Squibb Foundation and the VA’s National Center for PTSD—to launch free public versions of VetChange.

Many of the researchers involved in veterans’ health issues have spent most, if not all, of their careers trying to help those who served in the military. Often, their commitment is as personal as it is professional. “When you work with a group that’s been maligned for so long, it makes you want to stick with them even more,” says Sullivan of Gulf War veterans. “They’ve waited 22 years for answers, and at this point it’s become a social justice issue.”