Mark Paige Discusses Building Trust and Fighting HIV Stigma in Black Communities

Maggie Barrows, Mark Paige
February 07, 2024

At SIG, a key research focus is the design and implementation of evidence-based interventions to reduce HIV, and improve linkages to treatment and care in communities of color. Mark Paige, who is currently the project manager and co-investigator for two active studies focused on HIV testing, self-testing, stigma, and racism, has been deeply involved in addressing those issues for the past ten years.

For National Black HIV/AIDS Awareness Day, Paige spoke about Project TRUST , an intervention identified by the CDC as a best practice for increasing HIV self-testing. Paige was the project director for TRUST.

SIG: What does the TRUST intervention do?

TRUST is an intervention arm that has been shown to increase HIV testing and thus may prevent HIV, as testing is the first step toward biomedical treatment and prevention. We designed the intervention for friend pairs of people, and to teach them to self-test and do those tests every three months. We see knowing your HIV status as a form of empowerment. When a participant was recruited to the study, we asked them to reach out to a friend or relative who would participate in the study with them, and they were followed together for 12 months. Participants who had HIV at the baseline test were linked to care.

In the control arm, they received information about self-screening for diabetes, drug addiction, alcohol addiction, STIs, testicular cancer, etc. Participants in the control arm were tested for HIV separately, not together, and there was no active intervention, just delivering information.

In the experimental arm, the two participants were tested for HIV together. Before testing, the facilitator did HIV counseling with both participants at the same time and in the same room. They were taught about HIV, and we tried to show them how to lower their risk and opportunities for infection. Then the facilitator administered the Alere Determine HIV 1/2 Ag/Ab Combo HIV test afterward to both, and taught them how to do HIV self-tests. They were given their results at the same time and in the same room, and encouraged to test together every three months.

SIG: Why was TRUST developed? What makes it different from previous HIV testing interventions?

When we were doing [our previous study] CHHANGE, Victoria [Frye] and I talked about how to trust each other along with doing HIV testing. There was already research being done on couple testing, with people in relationships coming in to be tested together for HIV. We built off that but geared it toward testing together as friends and empowering them to test together and test themselves at home. Our focus was on testing every 3 months, not just one time, and supporting each other when they got results.

SIG: What stands out to you from the experience of implementing TRUST?

It was humbling for me. It’s really important that people understand that when we are testing individuals for HIV, there’s an emotional piece in that discussion. When someone ends up being positive, especially when they’re a young person, I have to be sensitive and encourage them, and let them know that they’re going to live. That is the most important thing. In TRUST, when a participant received a positive result, we would then link them to care so that they could have a second test to confirm if they were indeed living with HIV. The link helped them find someone that they can communicate with and find strength with. That’s why I think TRUST was so important. I remember two people coming in, I tested them, and one of them was positive. The participant who was negative was extremely compassionate to his friend. There was a couple who came in, and when I tested them together one of them was positive and one wasn’t, and I had to tell them together, which was extremely difficult to do. TRUST gave us as the researchers with the opportunity to go into the community and really help people and empower ourselves and each other.

SIG: What makes self-testing an important part of addressing HIV stigma?

TRUST is designed to empower the community and individuals in the community to get tested, go home (or wherever) and sit down and take an HIV self-test. The empowerment is that we don’t have to go to the doctor or the clinic. There’s an element of stigma, whenever a Black person goes to the doctor. There’s an element of stigma, fear, homophobia. Systemic racism and microaggressions that Black people experience consistently in healthcare facilities outside of the African American Community often stop them from getting tested for HIV and other STIs. I think in the Black community, when we’re talking about HIV or AIDS, there is a thread of stigma that takes place, and then often they might not even be taught or asked about taking an HIV test. TRUST is trying to eliminate that stigma by educating and empowering the individuals to test themselves, and having them teach a friend how to test so that they can share that empowerment even further.

SIG: What’s the role of education and self-testing in empowering the Black community to end HIV?

I think that the most important part of the research is education, and that the more we educate the community about HIV and how medical technology has developed, like the availability of self-testing, people will become more comfortable and feel more empowered. I would like to see the Black community continue empowering ourselves by taking care of ourselves by using HIV self-testing. Gay men, women, straight men, and bisexuals, regardless of gender or sexual orientation, can use an HIV self-test kit. It doesn’t matter if you have one sexual partner, various sexual partners, or none; you can still self-test for HIV in the privacy of your home. Even if you know your HIV status, it’s good to test because it’s there for you to use, and it’s a form of empowerment to know your results and to be healthy.

When I was in my 20s, if I had had an HIV self-test kit I would have gladly used it. I was speaking to an older guy about HIV testing recently, and he was speaking about the younger generation and how free they are with sex. I had to remind him, so were we, the only difference is that we didn’t have the resources that the younger generation has today. Someone who is in their 20s now, they have a whole different model of resources than we did at that age. Still, there’s always an element of fear in the Black community with our relationship to HIV. It’s not unique to the Black community, no one wants HIV. TRUST addresses a lot of this. It emphasizes the importance of constantly educating. Test. Test frequently. Know your results.

SIG: What are the next steps you hope to see from this type of research?

The TRUST intervention and design informed our current studies. We have two current studies that use TRUST or elements of it. CHHARGE is not a testing study, but it is addressing homophobia and HIV stigma and racism. There are elements of TRUST that are in CHHARGE because we can’t talk about HIV stigma without talking about testing and PrEP. You can’t talk about HIV stigma without talking about racism in the medical fields. We can’t fix everything but we can put barriers between people and the stigma by providing self-testing and educating people so they understand how stigma works and can kill.

In P3 (Sex-Positive Pleasure Practices), we look at empowering ourselves, realizing our own sexual identity, including what we like to do, what gives us pleasure. We’ve discovered that Black gay men, especially, can address HIV reduction by talking about community practices and sharing information within the Black gay. For P3, I interview a person for 3 sessions, talk about messages they received when they were young, create positive messages, and then provide education not just about HIV but about what do we do to stay healthy (like PrEP and HIV tests). It’s about giving people access to the things they want and teaching people to not judge their own sexual desires and that they can choose the sexual life they desire.

TRUST is one of the intervention “conditions” in P3, which is a four-arm factorial trial, so if the person comes to us and if they get the TRUST arm, I will meet with them, and do the TRUST intervention with their support partner via Zoom, and then the goal is that they learn, help and support each other through the process and the friend provides on-going support.

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