The top floor of a medical building located on a hill afforded the exam room of the Women’s HIV Program multimillion-dollar views of the San Francisco skyline, and on this particular December day the views were especially dramatic, with cloudy skies and light rain.
The Women’s HIV Program, part of the University of California San Francisco (UCSF) Helen Diller Medical Center in the city’s Parnassus Heights neighborhood, is a trauma-informed primary care clinic for women living with HIV. Most of the women served here (240 women at any given point) suffer from very complex medical and social conditions, and nearly all of them have experienced some type of childhood or adult trauma—from sexual and physical abuse or neglect to structural violence such as racism, transphobia, homophobia, or xenophobia.
The clinic’s director, Edward Machtinger, sat near a computer in the exam room, seemingly indifferent to the view. Instead, he was concerned with his next patient, a sixty-one-year-old woman named Minyon Harlin, who has been a patient here since 1996. Harlin has advanced AIDS and was not on her HIV medicine. Her crack cocaine use continued to interfere with her adherence to the medications, so she had decided to stop taking them a few weeks back, because enough missed doses could render the medication ineffective.
Harlin did not want to stop using crack and sometimes in the past had gotten upset when treatment for her substance use was mentioned, but she didn’t want to die from AIDS, either. The clinic’s goal that day was to support Harlin in using crack cocaine in a safer way and to get her back on HIV antiretroviral medicines.
“There’s something about her day-to-day emotional life where she feels that using substances is really crucial to her being able to tolerate a lot of different feelings,” Machtinger later said. “So what we have been working on a lot is how to stay safe while she’s still using.”
There was a knock on the door, and Harlin, a lanky woman with a big smile, entered the room escorted by her case manager. Harlin hugged Machtinger, calling him “Doctor Eddy.” With a casual style; blazer and chinos; and short, unkempt curly hair, Machtinger doesn’t resemble the typical stuffy primary care doctor in a white coat. Almost everyone calls him Eddy. He often looks so sincere when he’s talking with or about patients that his eyes get glassy as if he might cry, and he is prone to compassionately resting his hand lightly on a patient’s knee. Also sitting in on Harlin’s appointment that day was the clinic’s pharmacist, Jennifer Cocohoba.
The discussion began with Harlin expressing frustration that she lives in a residential hotel in a seedy area of town with shady neighbors. Housing is a common issue among patients, as the city is in the midst of an extreme housing crisis that has made it difficult for them to find affordable, safe, and stable housing.1 But soon the conversation turned to HIV medicines. Harlin admitted that she was concerned about her T cells, an indicator of the strength of one’s immune system. Harlin’s T cells were dangerously low at 111, worrisome enough to get her thinking about getting back on the HIV medicine.
“It’s really clear to me that you have a goal of taking the medicines,” Machtinger said. “But I also know there are things in your life that also get in the way of you taking the medicines. Can you remind me what the biggest problem is?”
“The biggest problem is I indulge—using—and I know that gets in the way,” Harlin answered in a quiet voice.
“Can you tell us a little more about that? Not about your using, but how does it get in the way?” Cocohoba prodded gently.
“Yeah, it gets in the way, when, you know, I have people coming by and…,” Harlin said.
“Ah, so when they come by, is it that you forget to use your medicine or you don’t want to use your medicines in front of them?” Cocohoba asked.
“I think it’s more like I don’t want to. To me that’s my personal…,” Harlin said.
“That’s your own private health business,” Cocohoba said.
“Yeah. Yeah,” Harlin agreed.
“There are a lot of women feeling very private about the medicines that they take. So we’ve done all kinds of things, like stick HIV medicines in a vitamin bottle,” Cocohoba said.
“Ahahhahaha!” Harlin laughed as she slapped her hands together in a single loud clap.
“So when they ask, ‘What are you taking?’ You can tell them, ‘Vitamin pills,’” Cocohoba said.
“Vitamins, ha, that would be cool,” Harlin replied.
Thoroughly impressed with the vitamin ploy, Harlin agreed to start taking the HIV medicine in two weeks, at her next appointment.
Machtinger’s conception of success for his patients has evolved dramatically over the years. With Harlin, success was her showing up at the clinic—which she had been doing every week lately—eating breakfast with the staff, engaging with other women, attending trauma programs, and sometimes getting a massage. For Machtinger, if Harlin is showing up at the clinic, then it means she’s not completely isolated and alone—and, most importantly, she’s alive.
“She may never stop smoking crack cocaine,” Machtinger said. “But she may be able to live, to survive, despite it.”
Other women at the clinic haven’t been so lucky. In the period 2005–18 twenty-seven women in the program died, according to the clinic’s count. And after extensive research by the clinic, they’ve determined that even though the immediate causes of these deaths appeared to be suicide, overdose, domestic violence, or an AIDS-related illness, the underlying root cause was trauma.
Machtinger, Cocohoba, and others in the clinic reject the HIV Care Continuum and its prioritization of biomedical factors as the be-all and end-all of HIV care. The continuum—which is how HIV clinics are measured and evaluated by the federal Health Resources and Services Administration—is a series of steps that model HIV care, beginning with getting people tested, then linked to care, and then on sustained antiretroviral therapy. The continuum (or cascade, as it is sometimes called) has as its end goal viral suppression, a term that refers to when someone no longer has any detectable viral load and is no longer contagious.2 But what Machtinger and colleagues discovered was that a lot of people who were virally suppressed still had a poor quality of life and were dying from other preventable illnesses.
That’s why now, even when a patient achieves viral suppression, Machtinger explained, “We don’t think our job is done here.” This sense of treating the patient, not just the disease, according to Machtinger, is “what informs this whole effort. Our job is not done, because people aren’t viruses”
Individual trauma is defined by the Substance Abuse and Mental Health Services Administration (SAMHSA) as “an event, series of events, or set of circumstances that is experienced by an individual as physically or emotionally harmful or life threatening and that has lasting adverse effects on the individual’s functioning and mental, physical, social, emotional, or spiritual well-being.”3
Machtinger refers to trauma as the original gateway drug—opening the pathway to depression, anxiety, substance use, health problems, and early death.
At UCSF’s Women’s HIV Program, almost a third of the women at the clinic have posttraumatic stress disorder (PTSD), and nearly all have suffered from childhood or adult sexual and physical trauma, according to Machtinger. In fact, women living with HIV have five times the rate of recent PTSD than the general population of women and twice the national rate of intimate partner violence.4 Machtinger refers to trauma as the original gateway drug—opening the pathway to depression, anxiety, substance use, health problems, and early death. HIV isn’t the cause of childhood or adult trauma but is a marker for it, he says.
For Machtinger, the trauma-informed care model proved to be the missing link. At the heart of this approach is a foundational philosophy of compassion, guided by an understanding that trauma can render some people more vulnerable to health conditions while also acting as an obstacle to effective treatment for those conditions. Looking at his patients through the lens of trauma and how it affects nearly every part of their lives and well-being demystified why so many of them reported having a low quality of life. It explained to Machtinger why so many patients didn’t get better despite medicines that made HIV an entirely treatable condition and despite a robust number of wraparound services.
But the incident that ultimately inspired the transition into a fully functioning trauma-informed primary care clinic was the brutal murder of one of their most beloved patients.
She was a patient at the Women’s HIV Program when her body was found in San Francisco Bay in 2010. “Even though we had lost many patients before, and some to really terrible violence, this one was particularly upsetting,” Machtinger said, “because it felt like we watched it happen.”
The woman had been with the clinic a long time, and they had helped her through many scary brushes with death brought on by the violent acts of her boyfriend—who, later investigations found, eventually killed her. Right before she was murdered, this patient decided to leave the boyfriend for good. The clinic even helped her find refuge in a skilled nursing facility so she could stay safe and get her life back together. Ultimately, though, the boyfriend lured her away and murdered her.
After the woman’s death, Machtinger and his team concluded that even in a program with more resources than most front-line clinics, they still didn’t have the interventions or knowledge to help someone like this patient gain the social support and confidence needed to leave such a violent man. Nor were they able to help her stop smoking crack—an addiction that made it even harder for her to end the abusive relationship.
After such a shocking tragedy, the clinic entered a period of reflection. They began to have regular meetings about causes of death to figure out what was killing their patients. That’s when they discovered that many of their patients weren’t dying from HIV or AIDS—they were dying from suicide, overdoses, and drug-related organ disease.
“Very few of our ladies actually passed away due to an HIV-related opportunistic infection—only three” of the twenty-seven who have died, said Cocohoba.
That’s when it all became clear that the common denominator among their patients wasn’t HIV or AIDS. It was trauma.
“These women were all very different individuals, but almost all of them shared a history of very significant childhood and adult physical and sexual abuse,” Machtinger said.
As the team looked back, they realized that not only was their clinic not responsive to trauma, it was actually trauma inducing to the patients, providers, and staff, Machtinger said. Patients felt too ashamed to reveal their substance use, which was a problem because using substances was often the main reason why people were getting sick and dying. Yet for a long time the providers and staff didn’t fully appreciate the extent to which patients coped with trauma by using drugs and alcohol. Consequently, when patients relapsed, they were not always treated at the clinic with the fullest compassion and understanding.
Under the old model, providers and staff struggled to handle the burden of caring for patients in such precarious situations. The clinic also devalued its nonmedical staff. For example, team meetings were led by the medical providers, who sat at the table, while members of their psychosocial support team sat around the edges of the room. “A case manager would be lucky if they got to pipe something in,” said Katy Davis, director of trauma-informed care at the clinic.Read Full Article on Health Affairs