Using trauma treatment to break down what one HIV patient calls 'stinking thinking'

February 28, 2023
brown pill lying in front of a multicolored box
A Biktarvy pill that contains three medicines to treat HIV sits in front of a colorful pillbox. Photo by Sarah Pack

A woman who asked to be called Shirley to protect her privacy has been haunted both emotionally and physically by what began as a fun night out in 2001. “I had been partying and was back home when I got a phone call from a friend, and everybody was over by her house. So I wanted to go back out again. But she lived too far away to walk.”

So the Charleston-area woman caught a ride. What happened next would change her life. “I felt like it was all my fault. If I had never got in the car, if I had never been wanting to go out to get high, I would've never been raped because I would've been in my house,” she said.

She was not only hurt and traumatized. Her rapist, the driver of that car, also gave her HIV. Human immunodeficiency virus causes AIDS if left untreated.

Unfortunately, trauma and HIV are a combination that experts in this area see all too often. One estimate put the number of people with both HIV and PTSD between 35% and 64%. That’s a big problem because trauma can affect patients’ physical and mental health and even their comfort with taking the medications that can keep HIV from progressing.

Christina Lopez 
Dr. Cristina Lopez

That caught the attention of clinical psychologist Cristina Lopez, Ph.D., an associate professor in the Department of Psychiatry and Behavioral Sciences at the Medical University of South Carolina. She’s leading a clinical trial testing whether adding PTSD treatment to patients' HIV care can make them healthier. The National Institute of Mental Health is funding the study.

“There's a lot of research showing that people who live with PTSD are less likely to take their antiviral therapy,” Lopez said, referring to the pills and shots that can control HIV.

“So for example, if you were sexually assaulted, and that's how you contracted HIV, taking a daily pill serves as a constant trauma reminder potentially. So then how do you, short term, get rid of your PTSD symptoms? You don't take your pill that day,” Lopez said.

Skipping pills can allow HIV to mutate and cause the medicine to quit working. Lopez said PTSD may also make people more likely to miss the medical appointments they need throughout their lives to make sure the virus stays under control.

So she's recruited 60 participants for her study at MUSC to try to change that. All have both PTSD and HIV. 

Every one of them will get an hour-long session called Lifesteps, which they can do in person or online. It emphasizes the need for people to take their medications as prescribed, shows what can happen if they don’t and gives them tools to motivate them to stay on track.

But half, including Shirley, will also get 12 sessions of cognitive processing therapy. Lopez said it uses education and cognitive training, also known as brain training, to help people identify thoughts and feelings about their traumas. It then gives them tools to change unhelpful beliefs. Each session will be 90 minutes long and take place at MUSC's Ryan White HIV/AIDS Clinic.

Dr. Allison Eckard 
Dr. Allison Eckard

Infectious diseases expert Allison Eckard, M.D., takes care of patients at that clinic. She’s also part of the study team. “It's just really exciting to see HIV patients get the help that they need in a very specific way. Because what I have learned is that trauma-focused therapy is very different than regular mental health services. This study allows us to offer that in a meaningful way,” she said.

“We all know anecdotally how vulnerable this population is and how at risk they are for traumatic events and how trauma plays into their medical care and the psychosocial aspects of their lives. But it's only been in the last couple of years that people started recognizing that this population needed trauma-specific mental health services.”

In South Carolina, that population includes about 20,000 people living with HIVThe virus hits some groups harder than others, especially racial and ethnic minorities and men who have sex with men. About a quarter of the people with HIV are women, like Shirley. Women are most likely to get it through sex with men who have HIV.

Despite the relatively big numbers, Eckard said some people think HIV isn’t a problem anymore. “The HIV epidemic in the U.S. is one of those things that many people either deliberately or subconsciously sweep under the rug – particularly in the South, because there's a lot of stigma and other things related to HIV that nobody wants to talk about. And so a lot of our patients with HIV suffer in silence. They don't have anybody to talk to about their HIV.”

Shirley feels that stigma. “I'm not out with my status yet. I've been diagnosed since 2005. I have two children, and they are the only ones that know.” 

But she’s comfortable talking with therapists about what happened to her. In fact, Shirley said the MUSC study’s cognitive processing therapy led to a breakthrough. She described the process. “When we did CPT, we used a booklet and wrote down the things that we're struggling with, some of the issues that we have to face,” Shirley said.

Pill bottle labeled Biktarvy lying on its side with a single brown pill in front of it. 
Skipping HIV treatments can allow the virus to multiply quickly in the body. The MUSC study aims to help patients make sure they stick to their medication regimen. Photo by Sarah Pack

“It's like breaking down what I call stinking thinking. It's each thought that you have that's negative about your existence, due to whatever trauma you've been through. And you feel that the guilt and the blame is on you.”

A therapist helped Shirley talk through that guilt and blame. “I learned through the counseling how to break each one of those down and dissect it and really understand what I was going through and that the blame was not mine. And it took some figuring out. I mean, still, I have some guilt behind it because of the fact that I was raped is how I contracted HIV,” she said.

“So I have that bias about blaming myself for the situation, and it took the therapist to really explain to me and break it down to me that it wasn't my fault. It would've happened to anyone, and I just happened to be in the wrong place at the wrong time. If it wasn't me, it would've been anybody else. It was just that type of situation. He was just that type of person.”

The realization was a relief, she said – peace of mind for a woman who has been living with HIV and PTSD for more than two decades. 

Shirley said she never let the PTSD keep her from taking her medication, but it did weigh on her. And doctors say PTSD isn't just a mental health issue. It can also cause physical problems such as higher blood pressure, a raised heart rate, tiredness, muscle tension, nausea, joint pain, headaches, back pain and other types of pain. It can even lead to a shorter life.

The study is still underway, but Shirley said the PTSD treatment had big benefits for her. She wants people to know that HIV is not a death sentence, as she first thought, but something people can live with if they keep it under control. 

Shirley hopes the study will lead to more widespread PTSD treatment for patients with HIV who need it like she did, allowing them to live healthier, happier lives. “I go to work every day. I laugh. I giggle. I enjoy life to the best of my ability.” 

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