“Often we see patients as difficult or hard to handle and fail to step back and recognize the signs of trauma,” said Michele Andrasik, PhD, from the University of Washington in Seattle, who is a member of the HIV Vaccine Trial Network.
And if providers don’t recognize the signs of trauma, patients can be “even more traumatized” by a healthcare system that sees them as negligent, she told Medscape Medical News.
Often, the experience leads them to “fall out of care. They don’t want to come back, they don’t want to listen to what their providers say, so they don’t adhere to medications and don’t get virally suppressed,” she explained. “And the cycle of trauma continues.”
Practices serving patients with signs of trauma — which include depression, substance use, suicidality, and the inability to think about the future — might need to implement a trauma-informed program.
Trauma lives in the body, Andrasik told a packed banquet hall here at the United States Conference on AIDS 2018.
Many of us don’t know a life without trauma.
“The experience of the traumas we carry with us, we embody it, we pass it down over generations,” she explained. “Many of us don’t know a life without trauma.”
Trauma does not just refer to individual incidents, such as a car accident or even a single sexual assault, she added. To illustrate her point, Andrasik displayed images of men in chains, men being attacked by police dogs, men lined up in orange prison suits, and listed the traumas of generations, such as slavery, violence, rape, lynchings, victimization, the erasure of languages and cultures, and the selling of children to strangers.
And that’s just among black communities, she pointed out. Native American and lesbian, gay, bisexual, and transgender communities have their own variations.
Research has shown changes in the nervous systems of the offspring of trauma survivors (Am J Psychiatry. 1998;155:1163-1171) and that epigenetic changes are associated with increases in processes that can contribute to cardiovascular disease disparities (Am J Hum Biol. 2009;21:2-15).
Epigenetics, Trauma, and the Care Continuum
Trauma, which can manifest as overactive nervous systems that physiologically make everyday stressors more work to manage, does not necessarily make a person more prone to mental health issues, Andrasik said. But symptoms of post-traumatic stress disorder (PTSD) can develop as a result of everyday stressors.
The symptoms of trauma and the coping mechanisms people use to deal with them often manifest as the very behaviors that inhibit people from keeping appointments, taking their medicines, and reaching undetectable viral loads, she said.
“All along the care continuum, trauma has an impact,” she explained. “It is critically important that whatever we do, whatever interventions we implement, we go forward with an understanding of stress and trauma.”
One historic trauma specific to gay men older than 50 years is the trauma of living through the early AIDS years, suggested Ron Stall, PhD, from the University of Pittsburgh. Stall is coinvestigator of the Multicenter AIDS Cohort Study (MACS), which has been following 4964 gay men since 1984.
When MACS participants were asked to identify the PTSD symptoms they experienced — such as isolation, anxiety, trouble sleeping, nightmares, emotional numbing, and a sense that they don’t have a future — 49.1% of the men reported none. But the other half of the cohort did report symptoms, and most of those had three or more. And HIV-negative men who lived through the early years of the epidemic were almost as likely to report symptoms as their HIV-positive counterparts.
The mortality rate for the men who were HIV-positive when they enrolled in MACS is 49%. For the cohort as a whole, it is 30%. In comparison, the mortality rate for British men returning from World War I was about 12%.
“What this means is that in a tightly knit community, folks went through unending loss, with the understanding that it would never end and there would never be a cure,” Stall told Medscape Medical News. In addition, 27% of the cohort reported that they continue to grieve the loss of their friends, lovers, partners, and family members. And 3% report that they still grieve “nearly every day.”
“What you’ve got is people with very specific clinical needs that are right now likely getting in the way of HIV care,” he explained. “If you’re deeply grieving, why would you continue to take your meds?”
The good news is that addressing historic trauma can improve outcomes. A report from the Substance Abuse and Mental Health Services Administration describes how to implement trauma-informed care, which can include emphasizing shared decision-making and providing patients with peer-support networks and programs that build support that can help patients get to appointments.
Esther Ross is proof that recovery from trauma is possible. Ross was diagnosed with HIV in 1993 when she already had AIDS. She had a history of rape, physical and sexual abuse, and drug use, and remembers a doctor telling her, “these medications are too expensive to waste on someone like you.”
But with the help of wrap-around services that included a peer health educator and a social worker, she found a 12-step recovery group and started taking her medications. Today, she’s 57, has a husband, a T-cell count of 4950, and a suppressed viral load.
“I’ve got better health now than when I was younger,” Ross said. “You don’t have to die with HIV.”
A few months ago, Roger Jackson, from the California Prostitutes Education Project (CALPEP), which works primarily with “hard to reach” people with HIV, brought in an outside consulting firm to teach his team about trauma-informed care. Of the clients served by CALPEP, 83% are black and 20% participate in sex work.
Andrasik’s presentation blew that training out of the water, he reported. He said he hopes the information will make his team “open and sensitive enough and aware enough of the needs of the community we serve to make sure we’re doing the best job possible.”
“Instead of approaching this work from a perspective of, ‘I have this I can do for you,’ and ‘I’m going to do that for you,’ we’re looking at why people do the things they do, even if they don’t realize the impetus behind it,” Jackson explained. “You can’t fix it if you don’t know why you’re doing what you’re doing.”
Andrasik’s research is funded by the National Institute of Mental Health. MACS is funded by the National Institutes of Health. Andrasik, Stall, and Jackson have disclosed no relevant financial relationships.
United States Conference on AIDS (USCA) 2018. Presented September 8, 2018.