PrEP use among Black transgender women: A qualitative study on barriers to PrEP use and the power and promise of community

Abstract

Black transgender women (TW) have disproportionately low uptake and use of HIV pre-exposure prophylaxis (PrEP), despite high vulnerability to HIV. Community and peer support may be important intervention targets to improve PrEP use among Black TW. We conducted qualitative interviews with 42 Black TW in the midwestern United States to understand Black TW’s experiences with PrEP and explore barriers to PrEP use and the ways peers and Black trans communities may support PrEP use. Using inductive thematic analysis, we identified three primary themes. First, many Black TW see themselves as PrEP advocates and look out for other Black TW. Second, participants described a desire to support the broader Black trans community thrive. Finally, participants described the importance of supporting Black TW involved in sex work, including by supporting the use of PrEP. Data from this study show that despite numerous health care and structural-level barriers, Black TW play a vital role in supporting PrEP use among other Black TW and supporting their communities. Our results highlight the promise of community-driven interventions among Black TW in supporting PrEP use.

Introduction

Stark disparities in HIV disproportionately burden Black transgender women (TW). Data from the Centers for Disease Control and Prevention (CDC) estimate HIV prevalence among Black TW to be 63%, compared to 17% among white TW (Centers for Disease Control and Prevention, 2021). While HIV pre-exposure prophylaxis (PrEP) is an effective HIV prevention intervention, it is underutilized among transgender individuals (Sevelius et al., 2020). A longitudinal cohort study with TW across the United States found that only 6.5% of participants in the Midwest initiated PrEP and of these, 41.2% of participants discontinued use (Cooney, Saleem, et al., 2023). Recent data from the CDC demonstrate a significant increase (16%) in PrEP prescriptions overall between 2019 and 2022. Yet, while 94% of white people (of all genders) who could benefit from PrEP have been prescribed it, only 14% of Black people who could benefit from PrEP have received a PrEP prescription. Data are limited on the racial disparities of PrEP use among TW, although use remains low (Centers for Disease Control and Prevention, 2021) and PrEP discontinuation rates are high (Cooney, Saleem, et al., 2023; Zarwell et al., 2021) among TW overall. However, data from seven urban areas included in the Ending the HIV Epidemic initiative (Fauci et al., 2019) indicate that Black TW are more likely to report recent PrEP use compared to white TW (Morris, 2024), suggesting that targeted efforts to improve racial disparities in PrEP use in these communities may be effective. That said, there remains a critical need for improving PrEP use among Black TW, as estimates suggest that approximately 88% of Black TW could benefit from PrEP (Cooney et al., 2022) and only 15% of women (inclusive of TW) who could benefit from PrEP have received a PrEP prescription (Centers for Disease Control and Prevention, 2023).

Social support and peer networks have been identified as key factors that may support PrEP use among Black TW (Pflum et al., 2015; Wood et al., 2017). Due to transphobia, social exclusion, and oppression, Black TW often find support within Black trans and/or LGBTQ+ communities, with whom they share experiences of adversity and a sense of community and empowerment (Cahill et al., 2012; Lockett et al., 2023; Ramirez-Valles, 2002). Theories of social support and minority stress (Breslow et al., 2015; Pflum et al., 2015) suggest that social connection and community may buffer against the adverse health outcomes faced by transgender individuals. Indeed, prior research has demonstrated that social support may attenuate the negative effects of minority stressors on marginalized communities and support mental well-being and in some cases, survival, for transgender individuals (Kia et al., 2023). Additionally peer support among Black TW may help promote mental health (Bukowski et al., 2019) and buffer against the psychological distress associated with stigma and discrimination (Trujillo et al., 2017). Social support networks have also been found to play a key role in HIV prevention and treatment, including increasing HIV clinic attendance and antiretroviral therapy uptake and adherence (Haberer et al., 2017). The HIV testing norms of a social network can also influence PrEP use; low HIV testing norms are associated with lower PrEP use among Black women (Johnson et al., 2021) and social support can promote routine HIV testing (Lelutiu-Weinberger et al., 2020) among Black TW and gay and bisexual men. Support and connection within Black LGBTQ+ communities has also been associated with PrEP uptake (Chen et al., 2020; Mehrotra et al., 2018) and increased likelihood of future PrEP use (Quinn et al., 2023) among HIV-negative Black cisgender men and TW. Finally, mutually supportive relationships around PrEP adherence have the potential to counteract stigma, change social norms around HIV prevention, and increase self-efficacy (Wood et al., 2019).

This prior research highlights the promise of peers and social support in promoting positive health behaviors, yet there remains a dearth of research around the influence of community that centers the experiences of Black TW (Lockett et al., 2023). Black TW are often inappropriately combined with gay and bisexual men in analyses or excluded from analyses due to small sample sizes (Poteat et al., 2016; Zamantakis et al., 2023). In much of the literature cited above, the samples include Black cisgender gay and bisexual men and TW. This approach obfuscates the experiences of TW, contributes to missing or incomplete data, and makes it difficult to fully understand the role of peers and social support in influencing PrEP perceptions and use for Black TW. As such, this study draws upon qualitative in-depth interviews with 42 Black TW and provides insight into how peers, partners, and community can influence perceptions of and decisions about PrEP use. Findings from this research can be used to enhance our understanding of PrEP use for Black TW and inform interventions to increase PrEP uptake and persistence among those who would benefit most.

Methods

This study is grounded in a phenomenological perspective (Starks & Brown Trinidad, 2007), in that our goal was to understand Black TW’s experiences with and decision-making around PrEP. We were interested in understanding perceptions of PrEP, how peers, partners, and social support networks influenced PrEP use, and participants’ experiences with PrEP. To do so, we conducted in-depth qualitative interviews to capture the complexities of transgender women’s perceptions of and experiences with PrEP, specifically within the context of social relationships. This study took place in Milwaukee, WI, and Cleveland, OH, two mid-size Midwestern cities with significant racial and gender disparities in HIV. Between 2019 and 2021 (with delays in 2020 due to COVID-19), we conducted interviews with 42 Black TW. We planned to recruit a minimum of 30 participants. We expanded on the sample based on ongoing debriefing conversations with the interview team and our identification of ideas or themes that necessitated additional data. Eligibility criteria included 1) identifying as Black or African American; 2) identifying as a transgender woman; 3) being 18 years of age or older; 4) residing in Milwaukee or Cleveland; and 5) being able and willing to provide informed consent. Although the focus of the study was on PrEP, the study was HIV status-neutral, recognizing the importance of people living with HIV in supporting PrEP use for others in their social circles.

Study Team

We are mindful that our identities influence our approach to data collection and analysis. As such, we believe it is important to broadly describe our study team. This study was developed and implemented through a longstanding community-academic partnership. The study team was racially diverse and included gay cisgender men, a Black transgender woman, an individual who identified as trans-masculine, and cisgender heterosexual allies in both study cities. The study team was composed of individuals with lived and professional expertise in PrEP, HIV prevention, and trans experience. The interviews were led by three research associates; two identified as Black gay cisgender men and one identified as a Black TW. All received training in conducting in-depth qualitative interviews from the lead author and received regular feedback on interviewing throughout the study. Although interviewers were members of Black LGBTQ+ communities, they did not have existing relationships with study participants.

Throughout the study, the team met regularly to debrief interviews, discuss the interview content and approach, and think about interpretation and contextualization. The diversity of study team members helped to facilitate regular reflexivity around how we understood the data, what the potential implications might be, and how to approach data analysis. Specifically, having study team members with lived experience was essential in understanding the data and identifying research and public health implications.

Approach

Participants were recruited through partnerships with LGBTQ service organizations and HIV and STI testing sites, which hung flyers and posted information to their social media pages. Additionally, our research associates were well-connected to the Black transgender communities in their cities and conducted outreach through informal networks and sharing information at parties, pageant events, and similar venues. Participants were invited to refer other TW in their social networks to participate. Individuals were screened for eligibility and scheduled for an interview. In-person interviews were conducted at community-based organizations or via Zoom, when necessary. We continued enrollment until we achieved theoretical sufficiency (Dey, 1999), wherein we had obtained the depth of data needed to understand how peers and social networks influenced PrEP use. Theoretical sufficiency was determined through weekly study team meetings that provided opportunities to debrief and share major themes and patterns from interviews in both cities.

Given the sensitive nature of the study, we received a waiver of written consent. Individuals were provided with a 1-page informational letter that detailed the study procedures and risks. Participants verbally consented to participate, completed a brief demographic questionnaire, and then completed an interview that lasted between 30 and 90 minutes. Participants were compensated $50 for their time. The research was reviewed, approved, and overseen by the Institutional Review Board at the Medical College of Wisconsin.

Interview Content

A semi-structured interview guide was collaboratively developed by the team based on the team’s lived and professional experience (e.g., personal and professional experiences with PrEP, experiences with trans identity and healthcare), theoretical frameworks (e.g., social network theory (Phillips II et al., 2019), minority stress theory (Breslow et al., 2015), and our team’s prior research. The interview guide content included: 1) healthcare usage and experiences across the life course; 2) sexual health and behaviors; 3) perceptions of PrEP; 4) PrEP use experiences; 5) social and cultural factors; and 6) peers and friend groups. In discussions of social support and peer relationships, we specifically asked participants about their involvement in the Black LGBTQ+ community and their relationships with other Black TW, specifically. The goal of these interviews was to focus on participants understandings and experiences of PrEP and the contexts which have informed those understandings. We were specifically interested in how Black TW talk about and support one another within the context of PrEP and HIV prevention.

Data Analysis

Interviews were audio-recorded, transcribed verbatim, and coded using MAXQDA qualitative analysis software. We approached our analysis through a social constructivism lens, recognizing that individual realities are socially constructed and that many realities can exist simultaneously (Patton, 2015; Spencer et al., 2014). As such, throughout analysis we aimed to capture multiple perspectives, understand which perspectives and experiences were shared and by whom, and be reflective about how social factors such as power or social context influence both participants’ and researchers’ perspectives.

Given the team-based, community-collaborative approach to this study, we used a team-based, multi-stage analytic coding strategy (Corbin & Strauss, 2015). To enhance reliability, we used a team of three coders who began by independently reading three selected transcripts and generating lists of potential parent codes, subcodes, code definitions, and examples. Additionally, each coder used memoing to identify nuances and patterns in the data and develop preliminary themes. The team met to discuss candidate codes and finalize a codebook. Collectively, we created a single codebook that we then each applied to an additional three transcripts for further refinement and assessment of fit. The final codebook was then applied to all transcripts. All transcripts were coded by two different coders to increase consistency in code application. The team met regularly to discuss coding and identify preliminary patterns in the data. In addition to coding text, coders logged analytic memos (Saldana, 2016) to note subtle variations in perspective among participants, highlight inconsistences within narratives, compare and contrast overall themes, and reflect on participants’ experiences and narratives. We then analyzed the data using inductive thematic analysis grounded in phenomenology (Braun & Clarke, 2006, 2021), wherein we identified primary themes and meaning within the data by grouping and organizing coded segments of the data. First, we analyzed codes and memos in the data to examine potential relationships among codes, highlight salient ideas or themes within the data, and understand the relationships among codes (Glaser & Strauss, 1967). Specifically, we examined segments of text associated with particular codes of analytic interest relevant to PrEP use, communication about PrEP with peers and partners, and decision-making around PrEP use. Through these analyses, study team discussions, and examination of analytic memos and summaries, we developed major themes and identified excerpts of data that exemplified these themes. These data are presented below.

Results

The sample includes 42 Black transgender women. Participants’ ages ranged from 18 to 47 (median age 30.5). Six participants (19%) were living with HIV, five (12%) had a current PrEP prescription, and three (7%) had taken PrEP in the past. We analyzed these data to explore perceptions of PrEP, decision-making around PrEP use, and how Black TW talked about PrEP with peers and sexual partners. We developed three relevant themes. First, we found that many Black TW saw themselves as PrEP advocates who looked out for other and supported other Black TW. Similarly, in our second theme, participants discussed the role of the Black trans community and their desire to support and protect one another in taking PrEP, as they face multiple social and structural barriers and challenges. Finally, we discuss an area of importance to many participants, supporting Black TW involved in sex work, including in the use of PrEP.

“Girl, you good?”: Transgender women look out for one another’s health and wellbeing.

There was diversity among this sample of Black TW regarding how they viewed, trusted, and talked about PrEP with other Black TW. Overall, study participants were PrEP-aware. They had accurate information about PrEP and how to access it, and many spoke highly about the benefits of PrEP. That said, PrEP use was quite low among the participants (five current PrEP users; three former PrEP users). Most participants were comfortable openly discussing PrEP within their communities of Black LGBTQ+ peers and with potential sexual partners, although some pointed to a lingering stigma and reluctance to talk about PrEP. As one TW said, “My friends, we don’t talk about PrEP, which is really crazy. We talk about everything. We talk about our sexual partners, our status, but we never seem to go around PrEP” (MJ, 33-year-old from Milwaukee). Another participant in Cleveland who was living with HIV similarly said, “People I hang around? We don’t discuss PrEP. It’s a very touchy subject” (Kacey, 18-year-old from Cleveland).

That said, many study participants were openly talking about PrEP and their sex lives among close friends of other Black TW. This was particularly evident among those who seemed to have stronger connections to Black LGBTQ+ communities. One participant in Milwaukee said:

I seem to always be the one who brings up PrEP in my conversation. Like I’m always asking, ‘Girl, you good? You be going in like that, you need to make sure you’re okay.’ And I tell them, ‘Make sure you take it seven days straight before you even go about like that.’ (Shauna, 34-year-old from Milwaukee)

Like this participant, some individuals were self-described “PrEP advocates” within their communities. When asked whether she ever talked with her friends, most of whom were Black TW about PrEP, another participant stated:

Yeah. I’ve been advocating for other girls, like a maternal girl for other girls. We’ll be talking about sex or talking about if we did or didn’t use or whatever. I’d probably be like, “OK, did you, you know, did you wanna use PrEP?” and I experience worry when they tell me. . . . But, I just sort of gently nudge and I be like, well, just give ‘em a call, just sign back up, just go on it and take it. (Shine, 35-year-old from Milwaukee)

A participant in Cleveland similarly stated:

I tend to be the one that more so brings in educational things for them. I would say, just basically creating an environment where it’s accepted in normal life to talk about [PrEP] and not be judged for talking about a thing like that. I would say just helped in general with that. (Jade, 29-year-old from Cleveland)

This advocacy role was most evident among current PrEP users or participants living with HIV, and was often inspired by their own experiences. For example, a few participants cited having a “scare” as part of their motivation to encourage others to use PrEP. One individual described talking to her trans friends about PrEP:

The ones that are single, I tell them my experience before my actual testing scare. I had a scare that I had intercourse with a person who was HIV-positive. So, I tell them about that and how the person didn’t even want to tell. I wouldn’t have known to this day if the health care provider didn’t call and how she worried that she didn’t tell me. Yeah, so, I just tell them like it could have been. One of my sisters had a chlamydia scare and that made me talk about that with her. (June, 21-year-old from Milwaukee)

In addition to sharing their own experiences or “scares” with HIV and other STIs, study participants also described watching their friends die from complications of HIV. This profound loss was frequently a facilitator of communication around PrEP and a teaching opportunity for younger TW in the community. This is evident in the following excerpt:

If you’re a spontaneous person, if you’re out there having multiple sex partners, you definitely need to be on PrEP. Still, use your condoms though. Like, that’s my whole big thing. I even tell my gay kids, “USE CONDOMS!” And, like, I don’t say it just to be a statistic, I say because I’ve lost so many friends to it. HIV turning into AIDS. I’ve watched my friends dwindle away, I’ve seen my friends on death beds. Once you see shit like that, your whole perspective changes. I’m not going to say I was always the safest girl in the world. We’ve all been kids at one point. I was very reckless, I didn’t care about myself enough to protect myself all the time. And as a result of that, I caught STDs. But, of course they were the ones I could get rid of, thank God. And I learned my lesson. I just don’t want any of my gay kids to have to go through that. It’s a terrible experience watching people dwindle away from that. (Mo, 32-year-old from Cleveland)

Notably, this participant described being reckless as a “kid,” noting that, at the time, she didn’t care about herself enough to use protection. This self-described lack of self-care was evident throughout several interviews, wherein participants described difficult points in their lives due to mental health and social and structural factors, and often noted they were having more condomless or PrEP-less sex during those periods as well.

Participants who were older or identified as more experienced were also motivated by their experiences growing up with little support or connection to other Black TW. They felt compelled to now fill those roles for younger TW:

I be setting an example, that’s how I feel. Cause like me growing up, I really didn’t have that much representation, and so now that I have a lot of understanding, a lot of information, and a lot of language pertaining around Black transgender women, I think I took enough necessary steps so that I can be an example for the coming trans girls . . . I could be able to talk to the trans girls about PrEP and stuff like that. That’s what it means to me to be an example. (Courtney, 32-year-old from Milwaukee)

“I just really want us to use our voices together”: The role of community for Black transgender women

As some excerpts in the prior section alluded to, many participants in this study described a desire to support and protect their communities more broadly, and saw PrEP as an opportunity to do that. In addition to advocating for PrEP or encouraging safe sex within their friendship groups, there were some participants who felt a strong connection to Black TW as a whole community. In discussing her role in the trans community in Cleveland, one participant stated:

I’m OG. Simple. I deeply care for this community. I care for the people. I care for the soul of my community in this city. . . . I seen so many kids turned away who just want to be themselves and that breaks my heart. I’ve seen so many babies lose their lives before they even reach the age of 18 because they were kicked out and then they went to a wayward lifestyle that took their lives. And, for me, I feel obligated to stop it. (Leah, 33-year-old from Cleveland)

Similarly, Naomi, a 31-year-old in Milwaukee explained, “We’re talking about other social determinants they’re trying to overcome and adding a pill a day is just not realistic . . .PrEP is just not a high priority.” As several participants explained, the combination of social and health challenges made PrEP uptake and persistence difficult for many TW. As such, much of the discussion around PrEP also included a focus on the numerous social challenges many Black TW face that can inhibit PrEP use. Naomi went on to describe her own journey with PrEP. At the time of her interview, she was working in the HIV prevention field. She described first being introduced to PrEP at a local presentation several years prior.

I was very adversarial to what he was saying and it’s not that I did not believe in the medication. I did not believe there was time to have been enough work in the process to implement different products to people in my community, Black and Brown men and transgender women. I didn’t think that it was a clear path for them to have access to it in a meaningful way and that there was enough education around what it is, how it works.

Naomi remained reluctant to use or advocate for PrEP, but eventually got a new job as PrEP navigator out of state and explained:

I just flourished. I learned so much and I started to travel around the country and learned how important PrEP was. I would always say to myself “If I could just get this to work back home, what would this mean for my house kids, what this would mean for the people I grew up with, or who I just hang out with? Like, if they just had access to it.” (Naomi, 31-year-old from Milwaukee)

This experience was the catalyst for her eventual return to Milwaukee to continue PrEP advocacy work. Her focus, she said, was on how she could help the trans members of her own community in Milwaukee, after seeing the success of PrEP in larger urban areas like Chicago and New York, which saw much higher levels of PrEP use.

For others, although they did not necessarily consider themselves to be advocates, they did recognize a community-level benefit to their own PrEP use. As one participant explained

I think everyone should take [PrEP]. It’s definitely something different when you are a young transman or young SGL [same-gender-loving] man and/or just a person and you know that you’re not actively being as responsible or as safe as you could be. Even like me taking it, like some of them guys that pressure me or make me not use [condoms]? They still end up being partners. And so, like, even in that, me taking the stuff [PrEP], it is affecting my whole circle. (Shine, 35-year-old from Milwaukee)

This participant viewed her own PrEP use as not only providing individual-level benefit to her, but also keeping her “whole circle” safer, which included Black transgender men or cisgender men who are same-gender-loving. By ensuring she had adequate protection, she knew she was protecting others as well.

Finally, as mentioned above, the social challenges facing many Black TW not only inhibited PrEP use, but were also a key area of focus and advocacy for many study participants. Participants described their own personal challenges, as well as those they saw experienced by close friends. These shared experiences and understanding of hardship were also used as an opportunity for TW to support one another.

I think our community, a lot of us stand up for each other, a lot of us show up for each other, a lot of us try to support each other even if we can’t make it. We all do have a deep understanding for each other for what a lot of us went through. (Markie, 27-year-old from Milwaukee)

In this case, “our community” was a reference to Black TW in Milwaukee. These experiences contributed to a desire to see things improve in their communities and find opportunities for Black TW to thrive – which included HIV prevention. At the end of her interview, one participant was asked if there was anything else she wanted to share with the study team. She described a desire to help support younger TW in her community and for more collective activism:

I just feel like if we had more positive role models and examples, these girls wouldn’t feel like this is what a transgender life is about. I just really wish that I could just advocate these younger generations of women coming up so that they – I don’t know. I’m just ready to see a change in our community, it’s so stagnant, it’s been the same way for so many years, nothing’s changed and it’s just –there’s no effort there, nobody’s really trying and I’m one of a billion of transgender women and it’s just like, I can move some people with just my voice, but I just really want us to use our voices together. (Erika, 24-year-old from Cleveland)

Several other study participants similarly described wanting more for their communities and were exhausted by the numerous health and social challenges facing Black TW. Erika’s desire for “role models” in her community seemed to come from her desire to want younger TW to see the beauty and potential of Black TW in society, rather than the unrelenting social and structural challenges many faced. These social and structural barriers, however, were also what could limit the collective advocacy and change Erika wanted to see.

“Survival mode”: PrEP use in the context of economic insecurity and sex exchange

Sex work was a specific challenge facing Black TW in our study, and was also framed as an opportunity for Black TW to support one another and provide strategies for safety. Although our interview guide did not include direct questions about sex work, conversations around PrEP regularly included sex work and the socioeconomic challenges facing many Black TW. Participants explained that conversations around PrEP were more common in the “trade,” referring to the sex trade, and several participants believed PrEP use and advocacy was more important for TW who participated in sex work. One participant stated, “For sex workers, it should be on every fucking flyer. In every hotel room. Because the client offers you work, and you do it raw? Why not PrEP yourself?” (Leah, 33-year-old from Cleveland). Others explained that TW involved in sex work tended to talk about PrEP more frequently than in other communities:

I feel like iťs popular for the trade in this community. It is talked about. I do feel like iťs talked about. But do I feel like people care to take the precautions to do it? No. I feel like people honestly just tell the trade that they are on it and iťs some type of pill to prevent it so that the trade does not move forward into doing nothing and looking into no MyChart [electronic medical record] or looking into nothing else, “Oh, you told me you’re on that pill, PrEP? Okay, you good.” (Kacey, 18-year-old from Cleveland, living with HIV)

Despite talking about PrEP more, this participant didn’t feel like PrEP use was much higher among individuals participating in sex work. Rather, she suggested PrEP was used as a point of discussion and an easy way for someone to appear “safe.” Participants described how some individuals will request to see or offer to show new partners proof of their PrEP prescriptions through their MyChart app. For some, this could result in being paid more for sex by being “clean” and on PrEP.

Despite that, other participants explained how Black TW who participated in sex work were often marginalized in other ways, particularly due to their socioeconomic status, which also impacted their use of PrEP. Women described needing to sell sex to make money to survive. One individual stated, “I do know that a lot of people turn to streets because they have no one else to turn to.” (Rose, 33-year-old from Cleveland) Another interviewee described getting started in sex work during the early years of her transition.

I struggled with homelessness, and I turned to prostitution. I worked in Detroit from 16 to about 18. I didn’t have anybody, and the girls out there taught me how to get it, you know. Luckily, by the grace of God, I never got any type of record or any type of STD or anything like that. I always had myself doing it because I knew I was doing it for the right reasons, to keep food in my stomach and clothes on my back, you know. (Brooke, 32-year-old from Cleveland)

The TW in this study who had participated in sex work often described doing it out of necessity, as it provided enough money to allow them to eat and have a safe place to sleep. Several women also explained that it was older, more experienced individuals in the trans community who took them under their wing and taught or encouraged them to get involved in sex exchange as a means of survival. One participant stated, “The inspiration that I was getting in my ears was ‘Girl! Go get that money. You’re pretty. They’re going to love you.’” (Kelly, 32-year-old from Cleveland) She went on to explain how she’s now working with younger TW to encourage them in other ways.

I don’t want to be that girl that turns the next young girl into a prostitute. I definitely want to change as much as I can of the community around the trans girls. . . I definitely try to advocate as much as possible and really teach the girls. I really want to teach the girls a way out because I know coming in this game, what it really feels like. I just want to show girls a different way and give them the inspiration that I didn’t get. (Kelly, 32-year-old from Cleveland)

As many participants highlighted, the basic unmet social needs of some Black TW were often a driving force for sex work and also seen as an opportunity to support and uplift younger Black TW. Participants described sex work as an understandable reality, while also acknowledging that they desired another “way out” for these girls. The basic needs of women were often described as a barrier to PrEP use, which was difficult to use given the context many women in the sex trade found themselves in. One participant described sex work by saying:

I think that when you are in survival mode and you’re just trying to make it, it’s almost like you just don’t care. It’s very scary for life to make you feel that way because now you start to feel like you have to do things that you really don’t want to do. You just accept all the risks that come with it without really protecting yourself. (Erika, 24-year-old from Cleveland)

As Erika stated, “survival mode” made PrEP use difficult, if not impossible for many individuals. As the participant above explained, being in survival mode meant individuals had to do things they may not necessarily want to do, despite the risks, which made it difficult to prioritize PrEP and HIV prevention.

Discussion

This study aimed to explore the role of peers, social networks, and community in supporting PrEP use among a sample of Black TW. Our results highlight the potential benefits of community and social support for PrEP among Black TW, which may be an important intervention avenue, similar to what has been seen for Black sexually minoritized men (Johnson et al., 2021; Kelly et al., 2020; Quinn et al., 2020). However, we also heard from participants that PrEP use within the context of daily social, structural, and socioeconomic hardship was difficult, if not seemingly impossible, especially for individuals involved in sex work. While individual-level efforts to support and encourage one another around PrEP use are promising, their effectiveness may be limited by the barriers that the TW in this study described. This may be reflected in the fact even though most TW in this study spoke highly of PrEP and many described efforts to encourage others to use PrEP, actual PrEP use was relatively low in this sample (12%).

Our results support prior research which suggest that even when PrEP awareness and intent to use are high, myriad barriers limit PrEP use among Black TW (D’Avanzo et al., 2021). For example, in a study of Black and Latina transgender women, 87% of participants were PrEP aware, but only 18% of those who had heard of PrEP had ever taken it. Despite low use of PrEP, 75% of participants reported they would take PrEP if it were available to them (Poteat et al., 2019). There are numerous systemic and social barriers to PrEP uptake and persistence for Black TW including socioeconomic challenges, marginalization, HIV and PrEP stigma, and health care barriers (Baldwin et al., 2021; Cahill et al., 2020; Dang et al., 2022). These barriers have been hypothesized to partially explain the intention-behavior gap (Sheeran & Webb, 2016) that is evident in PrEP uptake; despite relatively high levels of PrEP acceptability and hypothetical willingness to take PrEP, actual use remains low (Dai & Harrington, 2021; Rendina et al., 2017).

These barriers were echoed by the TW in our study. Sex work, for example, was a dominant theme in our interviews, nearly always discussed within the context of socioeconomic challenges, homelessness, transphobia, or family rejection. As participants explained, these experiences made prioritizing PrEP difficult. As one participant reminded us, even “just one pill a day” was a big ask for some TW. Given social exclusion and marginalization related to education and employment, it is estimated that approximately 40% of TW in the US engage in sex work at some point in their lives, although some estimates suggest rates are much higher, particularly among Black TW (Becasen et al., 2019). Ethnographic research with TW who sell sex supports our findings that social and structural environments can enhance HIV risk and act as significant barriers to PrEP use (Cooney, Footer, et al., 2023). The realities of sex work, and the context within which sex work occurs, offer important considerations for PrEP interventions for TW, including understanding the socioeconomic and housing needs of TW, and the implications of acute socioeconomic hardship. That said, participants in this study described a desire to support and mentor women involved in sex work, which may serve as an important intervention opportunity, so long as the realities of Black TW’s experiences and challenges are adequately considered.

Despite these challenges, study participants also found ways to disseminate information about PrEP, encourage PrEP use, and begin to change the narrative around PrEP within their communities. While a few participants described having few, if any, discussions about PrEP within their social circles, others were self-described “advocates,” who regularly integrated PrEP into conversations with other TW. Study participants described the important role that the Black trans community plays in shaping their perceptions of PrEP and desire to advocate for PrEP. Specifically, the TW we interviewed described the urgent need to support Black TW involved in sex work by advocating for PrEP. While some women learned about PrEP through formal presentations, many others learned about PrEP through their social networks. Previous research on the role of social support in HIV prevention and PrEP use for cisgender gay and bisexual men has highlighted HIV shame and stigma as mitigating factors for PrEP activism and past experiences with first generation HIV treatment as a motivational factor for PrEP activism (Dubov et al., 2018; Grenfell et al., 2022). In contrast, many TW in our study articulated how their own experiences with HIV “scares,” sex work, PrEP, and losing loved ones to HIV shaped their sense of exigency for sharing information about HIV and PrEP with their communities. Catalyzing fear, grief, and care, into advocacy, the TW we interviewed used their own experiences as a bridge to engage their peers and share information about PrEP within their communities.

Support provided by the TW in this study also came by way of expressions of encouragement, care, and attempts to bolster others’ self-esteem and sense of personal value, particularly for younger TW and girls. It is worth nothing that the TW we interviewed regularly used familial language (i.e., “sister,” “kid,”) to describe those whom they supported emotionally. Prior research has found that having a parental figure within one’s network or being part of a chosen family was associated with greater likelihood of PrEP use (Chen et al., 2020; Zarwell et al., 2019) and that closeness of relationships and the relationship type (including constructed families) may be important factors in HIV prevention efforts (Shrader et al., 2024). A few women in our study (including one quoted here) described themselves as influential mother figures, and others specifically referred to their “kids,” referencing their constructed families of LGBTQ+ individuals. That emotional and appraisal support was articulated through the language of chosen family, and that those providing it typically shared identities, suggests a kind of emotional closeness and shared identity that is correlated with persuasive influence (Cacioppo et al., 2018).

Age may also be an important factor to consider in future interventions; research found that Black TW were more likely to have HIV prevention conversations with peers and social network members who were 15 or more years older than them (Shrader et al., 2024), echoing the potential importance of intergenerational support described in this study. Our study expands on prior research that shows that TW are often the primary source of information for other TW regarding transgender identity development and transitioning (Bradford et al., 2019), demonstrating the potential for Black TW to share information regarding PrEP, particularly for younger TW. As other studies have shown, younger TW prefer to learn about PrEP from transgender leaders in their communities (D’Avanzo et al., 2021). Additionally, transgender individuals who have stronger ties to LGBTQ+ communities have been found to have greater trust in PrEP and be more likely to take and adhere to PrEP (D’Avanzo et al., 2021; Mehrotra et al., 2018). Collectively, our research and this prior work highlight the potential for interventions that support Black TW in becoming health leaders in their communities to disseminate information about PrEP. For example, hiring and training Black TW to be community health workers to increase PrEP engagement, linkage to PrEP and HIV care, and provide support for social and structural determinants of PrEP, may be a promising intervention (Farley et al., 2021; Hammack et al., 2021), while also supporting objectives to foster socioeconomic security.

The importance of peers, social groups, and communities for Black TW in this study may reflect the influence of social norms on decisions around PrEP use. In prior research with Black women, willingness to use PrEP was higher if women knew their friends were also using PrEP (Rubtsova et al., 2013; Wingood et al., 2013) and norms around PrEP were positively associated with PrEP intentions (Teitelman et al., 2020). Similarly, in research with TW, social networks have been identified as a key determinant of PrEP uptake (Kelly et al., 2024; S. M. Wood et al., 2017). Social networks, particularly those with mutually supportive PrEP adherence behaviors, may counteract stigma and support network-level adherence (Wood et al., 2019). Collectively, the results from this study highlight opportunities for intervention that support existing social relationships, bolster community group participation, and enhance social norms around PrEP for communities of Black TW. This may be particularly important as new PrEP modalities become available and more widespread, as social support interventions may help in disseminating accurate information and supporting adherence.

This study has limitations. First, this study did not assess whether promoting PrEP within one’s peer or sexual network is effective at increasing PrEP use. That said, this study does highlight the potential promise of engaging community and peer networks of Black TW to promote PrEP, highlighting the need for further longitudinal and intervention research in this area. The recruitment of participants was purposeful and heavily relied on community organizations and social networks of Black TW. As a result, individuals who were less connected to other Black TW or not engaged with community organizations may have experiences that were not represented in our findings. Additionally, we did not explore various characteristics of social networks (e.g., strength of ties, percentage of those in the network using PrEP, sexual or gender identity of network members), which may influence the extent to which peer and social network support for PrEP is beneficial (Holt et al., 2018; Khanna et al., 2016; Kuhns et al., 2017). The interview questions specifically asked about participants’ involvement and relationships with other Black TW, who may not have been the strongest or most important sources of support in their lives. Social network analyses are needed to understand for whom social network support is influential and how. Additionally, our study did not identify differences in social network or peer support based on participants’ PrEP use or HIV status. That said, these factors may influence the extent to which Black TW are talking about PrEP and should be explored in future studies. Finally, we did not quantitatively collect data on participants’ socioeconomic status or sex work experience. This data may have been useful in providing context to participants’ perspectives on PrEP.

The results from this study highlight the promise of community-driven interventions among Black TW in supporting PrEP use. Our analyses reveal the vital role TW play in sharing information about PrEP and supporting their peers’ access to and use of PrEP, despite numerous health care and structural-level barriers. Interventions that build on existing peer networks to support PrEP use may be beneficial in helping Black TW overcome those barriers, particularly as new PrEP modalities become available, and efforts are needed to disseminate accurate information throughout communities. Future research focused on PrEP implementation strategies should prioritize the expertise of transgender people as the scientists, stakeholders, and leaders of community organizations contributing to impactful solutions that meet community needs (Restar et al., 2023). Acknowledging the expertise of Black TW and supporting community-led, transgender-specific interventions to promote PrEP and help TW overcome systemic barriers to access will be essential in addressing PrEP disparities moving forward.

Citation diversity statement

Researchers have highlighted the racial, ethnic, and gender inequities in citation practices in numerous academic fields (Bertolero et al., 2020; Chatterjee & Werner, 2021; Dworkin et al., 2020), such that papers authored by women and racial and ethnic minorities are under cited relative to the number of those papers in the field. Accordingly, during our writing process, we interrogated the literature we read and cited, and aimed to cite research that reflects the diversity of the field in thought, method, and gender, race, and ethnicity of authors. Although this approach is insufficient for addressing these biases, we aim to raise awareness and encourage other scholars to examine their citation decisions.