Unraveling the Impact of Trauma on People With HIV -- and Their Care Providers
An Interview With Edward Machtinger, M.D.
When treating an HIV-positive person, it's already a fair amount of work, and sometimes quite the balancing act, just to focus on the numbers: CD4 count, viral load, lipid levels, renal markers, and so on. But for a massive number of people with HIV, how well they are doing can't solely be measured numerically. The extent to which life trauma affects their health is a major factor, and it can seem daunting to find the time, resources, strategies and confidence to address the impact of profoundly affecting, often-disturbing and frequently ongoing trauma.
Edward Machtinger, M.D., has devoted his career to innovative work with marginalized and vulnerable people living with HIV, and has collaborated with researchers, providers and advocates to develop a scalable model of trauma-informed primary care for women living with HIV that has proven helpful for patients and providers alike.
TheBodyPRO.com recently interviewed Dr. Machtinger, who is a professor of medicine and the director of the Women's HIV Program at the University of California, San Francisco (UCSF). He spoke with us about his research, clinical experiences and collaboration with advocates to create this model, and shared thoughts and resources for its implementation.
Awakening to the Impact of Trauma
Let me start out by asking your background as a provider, how you came to this project, and how you came to understand the importance of trauma-informed care.
I first decided to go into medicine because I was a young, gay activist in college in the mid-'80s in New York City, as the early HIV epidemic was really exploding. I thought of medicine as a way for me to be involved meaningfully in the epidemic. I had, at that time, hoped to run a small, creative, innovative program for vulnerable or marginalized individuals living with HIV.
Ultimately, that's where I ended up. I went to medical school at Harvard, and I did my internship and residency in primary care internal medicine at UCSF, and started working as an HIV primary care specialist right after residency. I run a Ryan White-funded program for women and adolescents living with HIV, including transgender women. The program was among the first in the country specifically designed for women living with HIV.
We got our first grant for the program in 1993 after we realized that the women being seen in the general program weren't doing very well. They would come into the program and most people who were working there were gay and white. Most of the other patients were gay and white. And the women were really different. Most were women of color. Many were poor. Very few of them were out. And the experience of being in the clinic just further reinforced the idea that it shouldn't be happening to them, that something was terribly the matter that they had HIV, and that they were really unique -- when, in reality, there were more and more people just like them getting HIV.
What would happen is, especially because they weren't out about their HIV status, almost to anybody, they wouldn't go get the services they needed that we referred them to -- the gynecological services, social services, mental health services. And so we decided to create a clinic that was a one-stop shop for women and girls living with HIV that has since become the norm, or the model, for Ryan White care services for women across the country.
My awakening to the issue of the impact of trauma on the lives of our patients came when one of our patients was found floating in the San Francisco Bay. That was a patient who we knew and loved very much.
We also knew that she was experiencing horrific domestic violence from her partner, and did everything we could as a clinic and as a community to help her get safe. In the end, that didn't work; he lured her away from where she was staying and murdered her, likely because he realized that she was really going to leave him.
We convened a group of all of the people in the city -- approximately 30 different providers -- who had worked with her, to learn from her death. From those meetings we realized that our clinics, despite having really exceptional HIV services and medical services, were really not designed to help women heal from lifelong abuse and prevent re-victimization.
More fundamentally, we realized that there was a mismatch between the treatment we were providing our patients and the healing that they really needed. From that meeting, we dedicated ourselves to understanding the intersection between recent and past abuse and the health outcomes of our patients.
Recent Abuse Linked to Poor Outcomes, Antiretroviral Therapy Failure
As you came to have an understanding of the impact of trauma on your patients' lives, how were your patients doing? And what did you come to understand were the ways your clinic had to address trauma in order to make a difference in the HIV care continuum?
The first things that we did were two studies that looked at our patients, and then looked at women living with HIV across the country. Amongst our patients, we did a study looking at detailed behavioral and health data that we collect during intake interviews for our prevention-with-positives program. We looked for factors that were associated with core health outcomes amongst our patients.
We found that those patients who reported recent abuse were over four times more likely to be experiencing antiretroviral failure. And that, to us, was totally startling. We also found that over half of our patients report active depression. Forty percent of our patients are actively using crack cocaine, methamphetamine or heroin, and the vast majority of them are not out about their HIV status -- many not even to their families or their intimate partners.
If you look at the treatment cascade, our patients in general appear to be doing exceptionally well compared to the national rates: 91% of our patients are prescribed antiretroviral therapy, and 85% of those have an undetectable viral load. But even among those who have an undetectable viral load, the vast majority of the patients, from our perspective, are doing quite poorly. As I mentioned, over half are depressed. Almost half are actively using hard drugs. Very few have supportive networks of friends to help them through difficult situations, and help them avoid abusive partners, and help them be successful with their life and health goals. We hypothesized that, for many of our patients, not being out about their HIV status or histories of trauma was a key impediment to making real friends and creating a support network.
Startlingly Disproportionate Rates of Trauma and PTSD Among Women Living With HIV
The next study we did was a meta-analysis of rates of trauma and PTSD [post-traumatic stress disorder] among women and girls across the United States. In our individual population, approximately 18% reported recent abuse, and approximately 70% reported lifelong abuse. We wanted to know whether those high rates of recent and past trauma were seen in HIV-positive women across the country, or whether that was something very specific to our population. In this meta-analysis, we looked at 29 studies with a combined population of 5,930 individuals, and found really startlingly disproportionate rates of trauma and PTSD among women living with HIV, compared even to the very high rates in the general population of women.
For example, approximately 55% of women living with HIV have experienced intimate partner violence, compared to the already high rates of 24.8% in the general population. Over 60% of women living with HIV have been sexually abused at some point in their lifetime -- five times the national rate of 12%. And, not surprisingly, 30% of women living with HIV have recent or current symptoms of PTSD, which is six times the national rate of 5.2%.
So, the high rates of trauma and PTSD, and their consequences –- which include depression and substance abuse -– that we were seeing locally were representative of what was being seen across the country among women living with HIV.
And our experience in clinic confirms that. Very few of our patients are working. Very few have supportive networks of close friends. Very few are really thriving and achieving the life goals that they have set out for themselves. And so I think that the treatment cascade doesn't capture the actual challenges to health and well-being that are faced by women and girls -- and actually all individuals -- living with HIV.
Bearing Witness: The Impact of Trauma -- Historical or Vicarious -- on Providers
You've written and talked about how trauma-informed care is also helpful to providers who have experienced trauma and who may experience vicarious trauma while working with traumatized patients.
Is there data on that, either that other people have done or that you've collected?
This is a learning process for me, too, honestly. There are people that I'm working with who have been at this for 25 years, and I've been at this for about four. I previously was primarily a clinician, administrative practitioner and leader for poverty/AIDS, but not a trauma expert. I've only become more of a trauma expert recently.
There are two elements of it. One is that -- and this is a subtle distinction -- many providers have trauma histories themselves. And so dealing with trauma just raises a lot of feelings for them; just even asking about it.
That's separate from something called vicarious trauma, which is when you're talking with a patient who comes in and reports just being raped, and you ask her to describe what happened and she describes in detail being kidnapped and the details of exactly what happened in her rape. It's the experience of the terror and your reaction to her trauma -- that's considered vicarious trauma. And that is probably even worse if you've had a trauma history, but is a little bit different than being just triggered by the issue because you have a trauma history.
When I give talks, just starting to talk about this issue, for people who have trauma histories, it is a trigger. Doing the work in depth, and working with people who are reporting recent rapes, and you're kind of holding that, and shouldering that, that is more considered what they call vicarious trauma.
There's a lot of stuff out there, courses and handbooks, on how to heal and prevent vicarious trauma. There's a woman named Maxine Harris who runs an organization called Community Connections, who's on our strategy group in Washington, D.C.; she talks a lot about vicarious trauma. Leigh Kimberg here at UCSF and the San Francisco Department of Public Health, also in our strategy group, runs an organization called LEAP-SF. On her website, she has a lot of resources, like how to start screening for intimate partner violence in clinic, simple screening tools, information about safety planning, resources to deal with vicarious trauma and much more. It is a really great destination to find most of the things you would need to learn about screening for trauma in primary care settings.
But in terms of data, most of what I know about vicarious trauma has to do, honestly, with my own personal experience with some stories. You know, just getting through to us on a level that is hard to handle emotionally.
Environment, Screening and Response: Trauma-Informed Primary Care
After these data were gathered, you worked with others to host the Strategy Meeting on Trauma-Informed Primary Care for U.S. Women Living with HIV. What did this group come up with?
Once we realized that trauma was playing such a large role in the health and well-being of our patients, we looked for a model that would guide our practice to most effectively respond to it. We were surprised that, despite a large amount of data associating trauma with poor health outcomes amongst people living with HIV, and in many other disease states, there was no model of trauma-informed primary care that integrated a response to recent and lifelong abuse that had been implemented or evaluated.
As a result, we partnered with the Positive Women's Network - USA, which is the largest advocacy organization in the country of women living with HIV, to convene a strategy meeting in August of 2013 at the Aspen Institute in Washington, D.C., that included trauma experts and leaders from the government, military, academia, community organizations and women living with HIV to identify an evidence-based model of trauma-informed primary care. The group continued its work after its two-day meeting and, over the past six months, has developed a model of trauma-informed primary care to help guide implementation and evaluation studies in clinics just like ours, who recognize the need for a trauma-informed approach, but needed some guidance about how to start and what the elements would be.
What we identified was that a trauma-informed primary care clinic has three core components -- environment, screening and response -- and rests on a robust foundation. More specifically, a trauma-informed environment is calm, safe and empowering for both patients and staff, and educates both providers and patients about the impact of trauma on health outcomes. Just as importantly, the environment supports providers, many of whom have had experiences of trauma themselves, to handle being triggered by the issue of trauma, as well as the vicarious trauma that they may experience when hearing the details of their patients' abuse or histories of violence.
A trauma-informed primary care clinic screens for both recent and lifelong abuse, as well as the consequences of lifelong abuse, including PTSD, depression and substance abuse, and does so in a way that is universal and respects the choices and autonomy of the patients. I think it's important to recognize that many patients who are in abusive relationships love their partners, and the choice about how to respond to a violent situation rests with them; our obligation is to be there to support them and provide them with as many options for safety and support as possible.
Finally, a trauma-informed primary care clinic includes on-site or community-based interventions that respond to both recent abuse and lifelong trauma. Responses to recent abuse may include a danger assessment, safety planning and referrals to community-based domestic violence organizations and/or shelters. Responses to lifelong abuse would include on-site or referrals to interventions that treat PTSD or the combination of PTSD with substance abuse, or a number of other evidence-based interventions for the consequences of lifelong abuse. There are actually many proven interventions to deal with PTSD and lifelong abuse. The Substance Abuse and Mental Health Services Agency (SAMHSA) has a website that describes many of these proven interventions.
This whole model rests on a foundation that includes clinic champions, trauma-informed values and robust partnerships with community organizations, because any fundamental change in a clinic or in primary care really can't be done in isolation and will need to be done with leaders who genuinely believe that this is important, and with community partners who have expertise in this area.
From Modeling to Implementation: Helping Patient Behaviors and Choices Seem Less Mysterious
That sounds like a lot. Primary care clinics are already overwhelmed in many regards by the requirements placed upon them. And to some, adding screening for lifelong and recent abuse sounds like yet another task. But for us, the epiphany -- and what's so exciting -- has been that understanding the impact of trauma feels like a way to be far more effective in the work that we are doing.
To us, it helps explain why so many of our patients are still smoking crack cocaine, despite having an array of services available to them here in clinic, including therapy, social work, case management, substance abuse counseling and supportive primary care physicians. It helps explain why our waiting room is just so chaotic, and people act at times so dysfunctionally. It helps explain why some people just can't take their antiretroviral medications, despite intensive pharmacy support. Understanding the role of trauma makes these situations feel less mysterious to us. And it helps me, as a clinician, feel far more compassionate about my patients who are struggling to be healthy in their lives.
For example, when I am engaging somebody who is actively smoking crack cocaine, I now tend to say, "Of course you're smoking crack cocaine. Crack is obviously providing you with something helpful in your life. Let's talk about the good things about crack cocaine, and how it's helping you." Underlying that is my understanding that many people who are smoking crack cocaine have PTSD from having had a lifelong history of childhood sexual and physical abuse, adult sexual and physical abuse, and intimate partner violence that has led them to be profoundly anxious and isolated. And crack cocaine has been one of the few ways of coping with that. Unless we can address their underlying profound anxiety, dealing with their substance abuse and medication non-adherence and health issues is just not going to be effective.
For clinics interested in making this transition, what's the first step?
Is there a potential danger in opening a Pandora's box by not fully implementing a trauma-informed primary care approach?
The model of trauma-informed primary care that we articulate is aspirational. Very few primary care clinics or clinicians have the power to change their clinical environment to become trauma informed, initiate comprehensive screening and begin performing interventions that are evidence-based into recent and past trauma. Most of us don't have the buy-in from our institutions, the resources or power to do all of that.
I do not think it is necessary to implement a comprehensive model of trauma-informed primary care to begin utilizing the understanding of trauma and its impact on patients to help our patients heal. I think the first step would be to educate ourselves about the role trauma plays in the lives of our patients, and how our clinics themselves -– the care environments -- are either helping our patients heal or triggering their trauma even further.
I think we have come to accept that frontline poverty AIDS clinics are by nature chaotic. And many of us have actually been drawn to this field because of that chaos.
What I've come to realize is that that chaos is not serving our patients, and it's not serving us, as providers, and that our clinical environment needs to acknowledge that the way we treat our patients and the way we treat each other and support one another have a big impact on how our patients respond to our medical care.
The other thing I would suggest is being willing to start asking the questions. So many of us in HIV are surprised that people outside of the field of HIV are terrified to even raise the topic of HIV. People outside of the field of HIV don't want to know about someone being HIV positive, because they fear that they won't know how to handle it. And we in the field of HIV are always surprised about that, because HIV is a health condition, like any other health condition.
Similarly, even in our field, people are scared to ask about abuse. Yet most of us know how to deal with a positive response to questions about recent or past trauma -- that a danger assessment, safety planning or referrals to community organizations are the first step to help a woman who's experiencing acute intimate partner violence become more safe. Simply knowing about past abuse may help us care for our patients over time, so that their current behaviors (which may include substance addiction, or depression, or medication non-adherence) or other factors in their lives can be understood in that context. In my experience, understanding their histories of trauma has led me to have far more effective, real conversations with patients about those issues.
An Adaptable Model for the Cross-Community Need for Trauma-Informed Care
Your research has looked at a range of women, including transgender women. Have you seen that transgender women and non-transgender women are in need of a similar set of practices and services under trauma-informed primary care, or are there some areas in which transgender women's needs differ, and the response should also address them differently?
The model of trauma-informed primary care that we created with the strategy group isn't really limited to women. There's a large body of data that suggests that lifelong abuse is related to the majority of morbidity, mortality and disability across many diseases in the United States in both men and women -- including heart, lung and liver disease; obesity; diabetes; substance abuse; depression; as well as HIV.
Many transgender women, in particular, have experienced an array of traumas, some of which are unique, I believe, to being a transgender woman -- including widespread discrimination and an unacceptable level of harassment and violence that many experience on a daily basis.
I also believe that this model is appropriate for other populations of people living with HIV. For example, many young, black gay men come from communities that are very violent and who personally may have experienced sexual abuse, neglect and other personal traumas. I don't believe that the model of trauma-informed primary care is substantially different for the various types of individuals affected by trauma, including women, transgender individuals and men. Addressing trauma in all of these populations has the same exciting potential to help transform primary care from treating peoples' symptoms with medications to one that gets to the root of so many problems and is genuinely healing. I believe that this new focus has the potential to significantly improve the primary care experience for both patients and providers, which would be great.
Thanks so much for your work, and for taking time for this interview.
This transcript has been edited for clarity.
Julie "JD" Davids is the managing editor for TheBody.com and TheBodyPRO.com.