When Gina Marie Brown was diagnosed with HIV in 1994, she was pregnant, two years sober, and hanging on by a thread.
After her diagnosis that thread threatened to snap. She started squirrelling away pain pills and hatched a plan. When her baby was born, she'd take the pills, "go to sleep and never wake up."
What stopped her was intake case manager Norman Dixon, who got her enrolled in an outpatient substance abuse program right away. It was case manager Tina Louie, who came to her door in "the heart of the hood" to check on her and her baby. It was the child care. It was the ride to the clinic in a van with other women with HIV. It was being able to get therapy at her HIV clinic, so no one in her neighborhood would have to know that she was getting mental health care. It was the sense she had that there were other women like her -- African American, been through hell -- around and available to talk. Maybe she wasn't so alone. Maybe things could be worked through. Maybe, some day, things would get better. She set the pills aside.
"Part D literally saved my life," said Brown, referring to Ryan White Part D, the funding program that sets up separate clinics and wrap-around services for women and children with HIV. "I know that if I hadn't gotten involved with Part D, I wouldn't have stayed in care with all the additional issues I had. I wouldn't be here."
For Brown, those issues include a lifetime of trauma, from childhood sexual abuse to abusive adult relationships, and the addiction, anxiety and complex post-traumatic stress disorder (PTSD) that comes with it. As legislators consider a proposal to fold Part D into Part C (which is expected to eliminate women-only clinics and end grants to community-based organizations), clinicians, advocates, researchers and women with the virus warn that the system's ability to begin to address trauma is at stake.
"This is not the time to be tearing apart pieces of the Ryan White program that are working," said Naina Khanna, executive director of Positive Women's Network-USA (PWN-USA). "We need time to figure out how Ryan White will most effectively wrap around the [Affordable Care Act] and ensure it meets the needs of people living with HIV -- who are particularly vulnerable because they're likely to be poor, likely to be people of color, who have experienced trauma, and because they are facing other difficult barriers while living with a highly stigmatized disease."
From Acute to Chronic Trauma
In the 1990s, Kathleen Sikkema, Ph.D., was a professor at the Medical College of Wisconsin and for several years had been interested in trauma -- in particular, interpersonal violence and traumatic loss when a loved one died from AIDS. Still, she describes herself as an HIV expert with no formal training on trauma when she started to ask how the two interact.
What she and other researchers have found in the last two decades is damning: Women with HIV and gay men are more likely to have experienced childhood sexual abuse, and as many as 55% of women with HIV report having experienced abuse in an intimate relationship. And it's not just cisgender women (that is, women assigned female at birth). There's less research on transgender women, but the research that exists finds that misgendering (calling people by a word that does not correctly reflect their identified gender) by family members can be traumatic, as are the catastrophic levels at which transgender women are targeted for violence in the community.
On top of this, layer in traumatic experiences of food shortages; parental absence or incarceration; witnessing violence in the home; as well as community and structural violence such as racism, homophobia, sexism or transphobia, and you have a community that often comes to HIV diagnosis not only with experiences of trauma but also with PTSD.
The two are not the same. It's normal to have physical, psychological and physiological reactions after a traumatic event such as a rape or even a car accident. But given time, distance and social support, those effects can diminish or disappear almost entirely. But when trauma repeats itself, or multiple traumas pile on top of one another, that's when they can lead to the life-altering symptoms, including insomnia, flashbacks, recurrent thoughts, anxiety and depression, that comprise PTSD.
What's more, as far back as 2000, researchers were realizing that the more traumatic events one has experienced, the more likely one was to progress to AIDS. In fact, a 2000 study by Jane Leserman, Ph.D., a psychology researcher at the University of North Carolina Chapel Hill, found that the risk of progressing to AIDS doubled with every traumatic experience. That study, conducted before the most effective antiretroviral treatments were developed, was replicated in 2007, and found much the same thing: Trauma, chronic depression and stressful life events correlated to a drop in CD4 T-cell counts, an increase in viral load, and a greater risk of death, whether or not one was on treatment.
The things one does to cope with PTSD -- the drinking to quell the nightmares, the survival sex by young people escaping abusive homes -- and the incarceration that can follow can also make one more susceptible to future trauma and an HIV diagnosis. That's what Sikkema's research is about now -- the so-called "avoidant coping strategies," like alcohol use, that people develop as the result of trauma that can lead to more trauma and exacerbate the risks for HIV infection.
The question, said Sikkema, is what to do about it.
"Most providers know that a history of trauma or current trauma is relatively common in their [HIV-positive] patients and that it has a potential impact on care, but they don't necessarily know how to address it," she said. "Does that mean they have to have a specialist? Do you bring these things up or not? Who's giving trauma-related care? Is it the nurse? A counselor? The physician? We have to figure out what is feasible."
How to Begin the Healing
The good news is that there's a lot of research showing that people with PTSD can heal -- but it takes focused effort, access to services, a robust support network and clinicians trained in so-called trauma-informed care to foster healing. For instance, Sikkema's research found that the first step to opening the door for changes that lead to improved quality of life may be to educate people with HIV about the connection between trauma and avoidant coping strategies like skipping doctor's appointments or drinking to excess. Therapy can address the depression, anxiety and underlying trauma, while peer counseling can ease isolation and empower people with trauma. Training physicians, social workers, counselors and front-office staff about PTSD and how it functions can help reduce clinician frustration and foster compassion, as well as help providers work with people living with HIV as they are, instead of demanding that they simply adhere to treatment regimens -- period.
Edward Machtinger, M.D., director of the Women's HIV Program at the University of California, San Francisco, and author of several studies on trauma in women with HIV, says that giving women control over how and when they address their needs -- opting for harm reduction rather than complete abstinence from drug use, for instance -- begins to heal a part of the PTSD that leaves the sufferer feeling like everything is out of their control and hopeless.
Part D and Trauma-Informed Care
Before Part D, women with HIV in San Francisco got their care at a very gay-friendly HIV clinic -- which is great, except that the beefcake pictures on the wall, the many gay men who worked as clinicians and nurses, not to mention the gay male patients in the waiting room, all left women feeling like something was very wrong with them for having HIV. It can be, said Machtinger, restigmatizing.
"They were being given the message, 'You're not welcome here,'" he said. "Something's really wrong with you if you have this disease."
Fast-forward 22 years, and the environment is very different. First of all, it's a woman-specific clinic including both transgender and non-transgender women. There are case managers from Catholic Charities located at the clinic, as well as psychiatrists and therapists from South Van Ness Adult Behavioral Health. There are gynecologists. There are nurses and clinicians. And, of course, there's no sense that there's anything unusual about a woman being there, said Machtinger.
And because most of their care, from reproductive health care to mental health services to primary care and HIV care, is met there, they don't have to come out to their providers over and over again about having HIV.
"Many women are not out about their HIV status, as compared to men," said Machtinger. "There's such tremendous stigma and isolation among women of color and transwomen of color living with HIV, so the clinical environment needs to allow for both community and confidentiality."
And because community-based therapists, peer counselors and case workers are all part of the physician's care team, it means that they don't just assess a patient for her viral load and then move on. They meet and discuss each patient as a team, coordinating care and trying to figure out who on the team was the last one to see the patient. If a woman has missed appointments, they don't just drop it. Community-based outreach workers go out into the neighborhood and knock on patients' doors. They provide transportation and child care. In short, they care for the whole woman, and not just her HIV, said Khanna.
"That's the difference between a clinical and community-based environment," said Khanna, who herself is HIV positive. "In community-based organizations, often, when a woman comes in, she is asked what her vision for her future is, what her dreams are -- not just whether she's taking her meds and using condoms. She may feel more comfortable sharing with someone she identifies as a peer, in a non-medical setting, which can ultimately help her address her health care needs, too."
Ryan White 2.0
Eighty percent of Machtinger's patients are on treatment, and 80% of them have a suppressed viral load -- a metric of health. But for Machtinger, Khanna and Brown, it's not just about getting women to a place of having undetectable viral loads. Machtinger has said publicly before that the treatment cascade isn't enough when you're dealing with people who have experienced severe trauma. They need to heal from their trauma and also have a reason to live. That kind of healing requires leadership and support, he said -- additional training partnerships and resources -- that most Part D clinics don't currently receive. Last month, Machtinger, in collaboration with PWN-USA, released a blueprint for how to bring trauma-informed primary care into the Ryan White Part D clinic.
That's what's next, said Machtinger -- not dismantling the system that provides what little trauma-informed care is now available.
"We'd be losing a great opportunity by dismantling Part D and thus risking the dismantling of highly-effective interdisciplinary clinics for women," he said. "These clinics should be the sites where Ryan White innovates, yet again, by integrating a response to trauma into primary care, and showing the rest of the health system how to provide genuinely effective health care -- like we did at the beginning of Ryan White, when we invited community-based organizations into the clinic in the first place."
And it shouldn't just be for women, said Khanna. Lots of people with HIV have experienced high levels of trauma. One study found that 42%, nearly half of people living with HIV, have PTSD -- that's more than nine times the rates of PTSD in the general public. Given that, the answer should be to "uplift and expand" the best parts of Part D, said Khanna, including sexual and reproductive health care, to all people with HIV, rather than removing those pieces from care for women.
"This should be Ryan White 2.0," she said.
Listening With Different Ears
From her experience, Brown says there's something different about Part D. The fact that case managers like Louie visit patients in their homes can shift things in the lives of women with HIV and complex trauma. It did for her.
"She would come to my house. She would actually come to my house to see me," repeated Brown, who, years later, still seems moved by the gesture. "That was huge. This woman who I know she has to be terrified, I know she has to be scared -- she knocked on my door because she cares. Right then, I thought, 'If I ever get the opportunity, that's the person I want to be.'"
Brown did become that person -- and more. At one point, she was a direct services coordinator for a community-based organization funded through Part D, managing the cases of 188 people living with HIV, helping them get the rent and bus tokens -- whatever they needed -- to stay in care and stay in a stable environment. Eventually, she got her master's degree and now works as a trainer and coordinator for the local Ryan White Council. Sometimes, she said, clients still stop by her office and tell the receptionist that Brown is their case manager.
But Brown is clear: Recovery from trauma is a long, hard-fought process. She can still get spun out and retreat into a traumatized state. But it's so much better than it was, and it started, she said, with Part D.
"We do a lot of hand-holding and stroking our egos, and telling each other we can make it, that we're doing a good job" in Part D, she said. "What I really believe, though, is that, in Part D, people listen with different ears."