HIV Spotlight on Center on Caring for the Newly Diagnosed Patient


Unraveling the Impact of Trauma on People With HIV -- and Their Care Providers

An Interview With Edward Machtinger, M.D.

July 21, 2014

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Edward Machtinger, M.D.

Edward Machtinger, M.D., is a professor of medicine and the director of the Women's HIV Program at the University of California, San Francisco.

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. 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.

"Even among [our patients] who have an undetectable viral load, the vast majority of the patients, from our perspective, are doing quite poorly."

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.

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Reader Comments:

Comment by: Dilnoz (Tashkent, Uzbekistan) Mon., Jun. 1, 2015 at 6:43 pm UTC
Greetings dear.. my little sister she is 12 years old and she go t infected by AIDS/HIV in the local medical center either by a needle, or either by a dental tool around 2 years ago.Right now she is taking epivir, reterovir, kaletra medicines, and besides that , she is taking one white medicine against tuberculosis every single day we don't know the name of that medicine cause it is given by local tuberculosis center and now my brother is going to USA to New York. I heard that the best medication is USA which prolongs the health of a HIV/AIDS infected person. So as my brother is going now to NEw York What kind of medications should he buy which are not harmful and best useful for my little sister HIV/AIDS infected sister to prolong her life?
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Comment by: Dianne Nyoni (Sydney, Australia) Sun., Jan. 4, 2015 at 8:39 pm UTC
Thankyou for this detailed work, trauma is indeed prevalent in positive community and I believe a contributing factor. I hope we can all adopt the approach used and demonstrated in this article to approach HIV with a wholistic trauma informed care we can support all who are struggling with a violent history as well as those subjected to trauma daily whilst living with HIV.
Again thankyou as a HIV positive woman.
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Comment by: Teresa (Floral City, FL) Sat., Jan. 3, 2015 at 9:10 pm UTC
Excellent piece, this is me, but y'all put it in better words then I can.
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Comment by: Bob (Los Angeles) Thu., Aug. 21, 2014 at 7:47 pm UTC
I think you are missing the forest because of all of the trees. I believe everyone diagnosed with HIV is recovering from trauma. You seem to be working with individuals exposed to multiple levels of trauma, however I would wish you cast a wider net. There is a huge community of people struggling with how to cope with a disease they won't die from but will forever be judged for. These people need help and it's not there. Keep up the great work!
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Replies to this comment:
Comment by: Edward Machtinger (San Francisco) Sun., Sep. 14, 2014 at 6:44 pm UTC
Great point Bob! I think that the stigma of HIV touches all who are living with it. The stigma of HIV often leads to profound isolation, depression, addiction, and other health problems. One of my greatest hopes is to have clinics that serve people living with HIV have evidence-based services to overcome stigma. One stigma related intervention that we just studied is an intervention (called the Medea Project) that helps women living with HIV develop the confidence and skills to safely and voluntarily publicly disclose their HIV status through dance and theater. Notably, half of those who participated reported leaving or avoiding abusive relationships because they had reduced isolation, made real friends to support them, and overcame many of the debilitating effects of stigma. The people who participated were able to start seeing themselves as much more than just HIV positive and gained a voice to express their beliefs and goals. To your point, helping people cope with HIV in general (in this case by "coming out" and reducing isolation) is key to helping people break the cycle of violence, avoid re-victimization, and overcome stigma. Thanks again for your comment.

Link to tje full article about the disclosure intervention:

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