How Can We PrEP? Exploring Black MSM’s experiences with pre-exposure prophylaxis through Photovoice

Abstract

Pre-exposure prophylaxis (PrEP) can reduce the risk of HIV infection by over 90% among those at high risk via sexual transmission. PrEP acceptance and adherence remains low among those at highest risk of HIV, including Black men who have sex with men (MSM) in the US South. This community-based participatory research project explored Black MSM’s experiences with PrEP in North Carolina through photovoice, a methodology using photography and discussion. Our findings highlighted challenges and opportunities with PrEP, including intersectional stigma, the need for improved patient-provider education, and the role of community-based organizations in closing patient-provider gaps. This work is a first step towards understanding the daily lives of Black MSM on PrEP in the Triangle Region of North Carolina, including barriers and facilitators to PrEP use. Implications for public health practice highlight the need for conducting community level interventions, integrating PrEP into primary care, and normalizing PrEP through community conversations.

Background

Men who have sex with men (MSM),including but not limited to gay, bi-sexual, and same gender-loving men, bear the highest burden of HIV in the United States (US) (Centers for Disease Control and Prevention, 2020; Young & Meyer, 2005). The disproportionate burden of HIV on Black MSM is greatest in southern states. North Carolina (NC) has the sixth highest incidence rate of HIV cases in the country with the Black population making up 22.1% of the state population but accounting for 64.8% of new HIV infections (Centers for Disease Control and Prevention, 2019; Division of Public Health, 2018). Durham County specifically has the sixth-highest rate of reported HIV infection in NC at 26.8 cases per 100,000, with Black males having the highest rates of HIV in the county (Division of Public Health, 2018; Durham County Department of Public Health, 2017).

Although Black MSM are the most affected by HIV, research has shown that their engagement in protective behaviors is low, which further increases their HIV risk (Millett et al., 2007). This realization has been attributed to structural factors such as, unemployment, incarceration, and a lower likelihood of having medical insurance (Millett et al., 2012). These structural factors are inter-related and are associated with HIV. This results in the availability and choice of sex partners and is associated with residing in neighborhoods with high HIV prevalence and community viral load, which raises infection risk (Millett et al., 2012). These factors are exacerbated in the South where racism, historic wealth disparities, HIV-related stigma, poverty, higher levels of sexually transmitted infections, and laws that further HIV-related stigma remain in effect (Durham County Department of Public Health, 2017; Reif et al., 2017). Yet, despite the South’s high infection rate, this region continues to receive less federal and private funding per person living with HIV than the US overall (Reif et al., 2017). Thus, there is a critical need to identify ways to improve HIV prevention efforts through addressing structural factors among Black MSM in the US South.

One promising HIV prevention intervention is pre-exposure prophylaxis (PrEP), a daily pill that reduces the risk of HIV infection in people at high risk via sexual transmission by over 90% (U.S. Department of Health & Human Services, 2019). PrEP has the potential to reduce rates of HIV infection among those at highest risk, including Black MSM. However, a range of structural factors, similar to those associated with high HIV incidence among Black MSM (i.e. racism, lack of medical access and health insurance), create challenges for uptake and adherence. In addition to structural factors, a lack of awareness, accurate knowledge, and assumptions about PrEP prevent people from initiating PrEP and remaining in care (Brooks et al., 2011; Eaton et al., 2015). Prior work has found that both barriers (e.g. concerns that PrEP is not 100% protective against HIV) and facilitators to PrEP (e.g. free access to PrEP; one-on-one PrEP counseling) are more important for Black PrEP users than White, and that Black MSM may face additional unique barriers and facilitators (Eaton et al., 2015; Golub et al., 2013). For instance, Black MSM note particularly poor interactions with healthcare providers as a barrier (Eaton et al., 2015). As a result, PrEP use among Black MSM remains only around 10% (Eaton et al., 2018).

The Research Triangle, also referred to as “the Triangle,” is a region in NC defined by three major research universities (The University of North Carolina-Chapel Hill (UNC-CH), Duke University, and North Carolina State University). In the Triangle, a number of organizations are working to promote access and uptake of PrEP for vulnerable communities, including Black MSM. Despite this, PrEP uptake and adherence have remained notably low among Black MSM, and little is known about their experiences with and barriers to using PrEP. As these barriers are likely context dependent, successful structural and other interventions to improve PrEP outcomes must first develop a deep understanding of PrEP experiences and barriers among Black MSM in the region. This project aimed to begin developing this deep understanding. Our work was conducted as part of a graduate-level seminar on the community-based participatory research (CBPR) approach and Photovoice methodology. Our findings are the result of a secondary analysis of de-identified data obtained during the course project conducted in partnership with Triangle Empowerment Center (TEC), an organization that provides health and social services, including PrEP peer navigation, to Black MSM and other community members in the Triangle.

CBPR equitably involves community members, organizational representatives, and researchers in all aspects of the research process (Israel et al., 1998). Its key principles are: 1) recognizing the community as a unit of identity, 2) building on strengths and resources within the community, 3) facilitating collaborative partnerships in all phases of research, 4) integrating knowledge and action for the mutual benefit of all partners, 5) promoting a co-learning and empowering process that attends to social inequalities, 6) engaging in a cyclical and iterative process, 7) addressing health from both positive and ecological perspectives, and 8) disseminating findings and knowledge gained to all partners (Israel et al., 1998). In taking a CBPR approach, we equitably partnered with Black MSM in the Triangle to work towards achieving sustainable social change and health equity, specifically around PrEP and HIV prevention (Wallerstein & Duran, 2006). Importantly, this approach recognizes that individuals are embedded within social, political, and economic systems that lead to disparities in HIV acquisition and PrEP access or utilization (Israel et al., 1998).

Methods

Photovoice is a qualitative and exploratory CBPR methodology founded on the principles of constructivism, feminist theory, and documentary photography (Hergenrather et al., 2006; Wang, 1999). It enables participants to record and reflect their communities’ strengths and concerns through photography, promotes knowledge and critical dialogue about community issues through group discussion of photographs, and reaches local community members and leaders, policy makers, and advocates to build partnerships to effect change (Wang, 1999; Wang & Burris, 1997). Photovoice can serve as a particularly powerful methodology when addressing issues that are stigmatizing, that have been rendered silent by historic marginalization, or that have been silenced from within a community (Eng & Lightfoot, 2019).

Recruitment and Partnership Formation

This project was a partnership between graduate students and representatives of TEC, a community-based organization (CBO) in Durham, North Carolina that aims to reduce health disparities in minority and rural or hard-to-reach communities in the Triangle region. TEC serves communities in Durham, Raleigh, Chapel Hill, and surrounding areas in the Triangle region with social, health, and educational services. TEC’s PrEP program includes PrEP peer navigation, in which trusted lay people in the community support PrEP users to access services and remain in care. TEC also offers PrEP and HIV education and linkage to care.

Our partnership was initially formed for the purposes of a CBPR course at UNC-CH, building on previous research collaborations between one of the student co-learners (KL) and TEC. Throughout our partnership and in this paper, we refer to ourselves as co-learners, in an effort to reflect CBPR principles of collaborative partnership and shared learning. Specifically, our team comprised three student co-learners and three community co-learners. The student co-learners (KL, KA, and SAO) were two white women and one man of color; all were graduate students participating in the CBPR course at UNC-CH. Community co-learners were all men of color and residents of communities in the Triangle, who were purposively recruited in collaboration with TEC. To be a community co-learner, individuals had to identify as a Black MSM, have experience with PrEP (i.e., either currently taking PrEP or conducting PrEP-related work such as peer navigation), and be available to participate in study meetings and discussion sessions. In collaboration with TEC, we purposively recruited community co-learners who would be able to talk extensively about experiences with PrEP in the Black MSM community. All community co-learners had some relationship with our partner organization, TEC.

Study Procedures

After assembling our team of co-learners, we held two informational meetings to set team norms, discuss Photovoice principles, agree on project goals, and obtain consent from community co-learners. We collaboratively developed three “photo assignments,” which were prompts (written in the form of a question) to which community co-learners responded through photographs. We developed the first photo assignment during preliminary meetings, and subsequent assignments during regular photo discussion sessions. Our three prompts were: 1) What am I lacking when it comes to PrEP?; 2) How does PrEP fit into my life?; and 3) How can my community support me on PrEP? Each prompt was the focus of a single photo discussion session.

For the two weeks between sessions, community co-learners considered these prompts and took photographs representing their views and experiences with the topic. During photo discussion sessions, community co-learners each selected one or two photos to share with the group. The group then collectively chose a single photo to discuss more in-depth. These in-depth discussions were facilitated using SHOWED, a Photovoice facilitation technique that involves: 1) discussing a picture literally, 2) identifying how a picture relates to relevant issues, and 3) developing actions that could be taken to address those issues (Figure 1) (Wallerstein, 1994; Wang, 1999).

Figure 1:

SHOWED Model (adapted from Wallerstein, 1994).

During each photo discussion session, one student co-learner served as facilitator, one as co-facilitator, and one as note-taker. We audio-recorded all sessions and transcribed them verbatim.

Throughout data collection, student co-learners coded the data using a systematic qualitative analysis process. Codes were developed iteratively, and we met frequently to refine code definitions or clarify code application. After coding was complete, we developed a preliminary list of themes. With community co-learners, we reviewed the project photos, transcripts, codebook, and themes. We discussed each theme in-depth with to ensure the content resonated with community co-learner experiences and accurately reflected SHOWED photo discussion sessions.

Ethical Considerations

This project was conducted in the context of a one-semester graduate level class in CBPR for public health. The Photovoice process was implemented as part of course requirements. After the course concluded, all community co-learners were offered the opportunity to participate in manuscript and presentation development. All community co-learners and TEC leadership have remained engaged in this work, including co-authoring multiple presentations. However, not all community co-learners chose to participate in manuscript development. The three student co-learners worked to publish this paper with consultation and guidance from CBPR course instructors (EE; AL). Our secondary data analysis protocol was deemed exempt by the Institutional Review Boards of UNC-CH and North Carolina State University.

Results

Four primary themes emerged around the newness of PrEP; stigma, biases, and assumptions around PrEP; the daily life of those on PrEP; and the need to bridge patient-provider gaps. Throughout this section, we use pseudonyms to describe co-learner experiences. JT was a graduate student who used PrEP and was actively engaged in care. Kenny was a community member who also actively used PrEP. Anthony was a PrEP peer navigator. All three community co-learners were actively involved in local PrEP services and advocacy through TEC.

“There is PrEP, people!” The newness of PrEP

Community co-learners described PrEP as good news, and an exciting opportunity for themselves and their community members. They described a shared perspective that the good news of PrEP should be shared far and wide. During the third photo discussion session, Anthony described his motivation to tell as many people as possible about PrEP:

“If someone you knew, knew something that can help you, wouldn’t you want that person to tell you? … I’m just gonna shout it from the mountain to the rooftop to, from one corner to the other. From the north to the south, to the east, to the west. There is PrEP, people!”

Co-learners described PrEP as a source of hope. They drew a parallel between PrEP as a new source of hope for people in their community and antiretroviral therapy (ART) as a symbol of hope for people living with HIV during earlier days of the HIV epidemic. During the first photo discussion session, co-learners discussed one group member’s photo of a brightly-lit sign outside a pharmacy at night (Figure 2). JT noted the symbolism of the light in the midst of surrounding darkness, saying, “I’m not a poet, but I was thinking that, um, there’s hope. So his photo to me symbolized hope and positivity.” Co-learners agreed that this hope was meant to be shared with others who might benefit from PrEP. Kenny described a desire to educate his community about PrEP, saying people who use PrEP should be empowered to “talk to them and tell them information about it [PrEP], maybe just in case they want to get on it and them protect their self.”

Figure 2:

Discussion photo from first session, depicting a sign outside a pharmacy at night.

While the newness of PrEP was exciting and hopeful, it also presented challenges for co-learners. Throughout sessions, they described how, because PrEP is new, it is often up to individual PrEP users to advocate for themselves and to find support. Co-learners all described interactions with friends or family who did not fully understand PrEP, its purpose, or who might use it, which they found frustrating. During the second photo discussion session, Kenny described his feelings of frustration with friends who regularly asked him for information about PrEP:

I have friends that be on that [dating] site, that be -- because if you scroll up on some people’s profile, they be like, oh, ‘[HIV] negative on PrEP.’ And then you be like -- some of my friends would ask me, ‘What is PrEP? What is this pill for? How do it look?’ And then I’m like, I be lookin’ at them like, ‘Why is you askin’ me?’

While friends and family could be important sources of support for individuals on PrEP, co-learners stated that when friends and family lacked understanding or awareness of PrEP, it was difficult for them to provide meaningful support. Aside from friends and family, co-learners described challenges with healthcare providers who were not knowledgeable about PrEP. During the first photo discussion session, JT described how “it can present a very uncomfortable clinical experience when you feel like [you] are being prescribed something that like nobody knows about.” Other co-learners resonated with this, sharing experiences with providers who prescribed PrEP but could not provide information about side effects, as well as encounters with providers who were not perceived as LGBTQ+ friendly.

“Gay medicine”: Stigma, biases, and assumptions about PrEP

Co-learners discussed the stigma associated with using PrEP, asserting that this was related to PrEP’s newness, along with stigma and bias toward black and LGBTQ+ communities in the area. During the second photo discussion session, JT challenged the targeting of LGBTQ+ people of color as potential PrEP users, saying, “I mean, when the only time that you do mention PrEP is in the context of LGBTQ people, then you’re not normalizing it. Like you’re just always gonna be the gay medicine.”

Co-learners described stigma as a barrier for people seeking and continuing to use PrEP. Throughout photo discussion sessions, they explained that PrEP’s newness was often used as an excuse for providers’ lack of knowledge and for community members’ misconceptions about PrEP. For all co-learners, this felt intertwined with stigma around LGBTQ+ identity, both within and outside the healthcare system. During the second photo discussion, Kenny described the first time he told his parent about using PrEP:

It was hard for me. Cuz you don’t know … [if] they gonna look at you like, “that ain’t what I taught you growing up. You s’posed to wait till you married.” You looking at them like, “it’s just one pill!” … A lot of people that’s out [as gay] that’s scared to take it because they don’t know how their church family or their parents or their family are gonna judge them. Like, “oh, such-and-such child is over here taking pills for sex.”

All co-learners agreed that, in their communities, PrEP and LGBTQ+ identity were often associated with promiscuity, which was highly stigmatized. As a result, co-learners sometimes felt discouraged from using PrEP. During the second photo discussion session, Kenny discussed interactions with friends who have “seen me take a pill. And I had one of my friends say, ‘are you taking a pill just to have sex?’ I’m like ‘Nooo…’ And it’s like … if I’m finna [fixing to] get judged, there’s no use in me taking this pill.” Later during the same photo discussion session, he went on to describe how his partner did not trust his use of PrEP:

I’m leaving for [another city] tomorrow. First thing comes to my partner’s mind -- ‘oh yeah, you going to [the other city] to sleep around, cuz you on this pill.’ And I’m like, ‘Why is you thinkin’ that in your head?’ And it’s cuz somebody told them the negative about PrEP. ‘Oh yeah, it’s a pill that’ll help you- prevent you from catchin’ HIV. But yeah, he takin’ it so he can go screw around.

Co-learners also described how experiencing stigma at societal and interpersonal levels intersected with internalized stigma to influence PrEP use. JT described how “it’s just difficult to live outside, to live in a world that tells you you should hate yourself.” Other co-learners discussed how internalized stigma caused PrEP users to fear disclosing their PrEP use or seeking support from within their communities.

PrEP in “the bookbag”: Daily life on PrEP

The newness and novelty of PrEP and the stigma, biases, and assumptions associated with it converged in co-learners’ daily lives. Co-learners discussed how daily life on PrEP involved taking and potentially disclosing PrEP to others, advocating for themselves in the healthcare system, seeking out support, and identifying strategies for self-care.

During the second photo discussion, co-learners discussed a photo of a bookbag (Figure 3). Kenny introduced it by saying:

Figure 3:

Discussion photo from second session, depicting a bookbag used to carry and store PrEP.

I’m not always in one place … I’m always taking my bag, because it reminds me of, ok, whatever you doing at the friend’s house, remember your pill. And it’s easy for me to remember it, if I have my bookbag, like, ok. I’m not gonna get home till late at night, so I can take my pills with me and take it right then … why not put ‘em in there, take it, and don’t have to worry about, waiting, missing a dose … I can just go ahead and take it.

For Kenny, keeping PrEP in his bookbag was a way to ensure he never forgot it when he was away from home. He later discussed how carrying PrEP with him empowered him to disclose his PrEP use when and how he wanted, or to keep it private if he was not comfortable disclosing. Co-learners resonated with the idea of incorporating PrEP into daily life by “putting it in the bookbag,” which looked different for each of them. JT pointed out that “with younger people it’s just maybe a little bit more difficult to get into the idea of having to, like, pause your day for something every day,” but that carrying PrEP with him would be a helpful option for incorporating it into his routine.

Co-learners emphasized the importance of incorporating health, including PrEP, into their daily routines. During the first photo discussion session, they discussed a photo of alarms set on a cell phone, intended to remind someone to take PrEP. The photo reminded co-learners of the busy lifestyle within which they must fit PrEP; during the same session, Anthony described this, saying:

[The photo] tells the story of somebody who is on the go … it’s relatable, to be honest because a lot of people are on the go these days. Would that be going to school, going to pick up kids, you know, goin’ to pick up dry cleaning, running errands, whatever. We’re always on the go … we need to take time, the same way we take time to schedule when we need to get things done, we need to take the time to put ourselves or put our health first.

Although they agreed it was important to prioritize their health, co-learners described this as difficult to achieve when it came to PrEP. They discussed a tension between a desire to feel in control over their sexual health and fear of what would happen if others knew they were taking PrEP.

Co-learners further explained that, while putting PrEP “in the bookbag” helped to keep it at the forefront of their minds, they and many others in their community encountered barriers to adherence. These were often structural in nature; for example, co-learners discussed how, for many individuals using PrEP in the area, housing insecurity was a challenge. During the first photo discussion, Anthony explained these competing priorities, saying, “If I’m on the street and hungry, why and where would I sit and talk about the pill [PrEP] and I don’t have nowhere to lay my head?” Transportation was another barrier discussed by co-learners, who noted that many of the PrEP clinics in the area were inaccessible for those without consistent access to a vehicle, particularly those in rural or hard-to-reach areas in the Triangle region.

When it comes to navigating these barriers, co-learners noted that in their communities, PrEP users who felt supported in their daily lives had an easier time. This support could come from friends, family, and partners, as well as from providers and local organizations.

“The bridge”: Closing patient-provider gaps

The fourth and last theme emerged as co-learners described possible solutions to the daily challenges they face with PrEP. During the third photo discussion session, JT described a photo he took after a PrEP appointment (Figure 4), saying, “I wasn’t in the best mood … due to that clinical interaction where I felt like I was interacting with a provider who really had no perspective on like my clinical needs and the needs of my community.” Later, he went on to describe how “providers have the tendency to make the assumption that because they’re trained that they’re good at everything” and discuss the need for a “bridge between the people and the providers,” highlighting the gap between PrEP patients and providers.

Figure 4:

Discussion photo from third session, depicting a window inside a clinic, taken by a co-learner after a PrEP appointment at the clinic.

Co-learners highlighted how the “bridge” was about more than access to information about PrEP, but about “social competency.” During the third photo discussion session, JT explained this lack of competency:

I asked a provider before about a medical practice. And I was like, ‘Oh, do all your adult physicians prescribe PrEP?’ And they said, ‘Oh yeah, all of them, all of them prescribe PrEP, like you don’t need a certification or anything.’ And that wasn’t my question. My question was more like, ‘Are your providers skilled in speaking to patients, many of them likely being queer who will need PrEP, like the support, like are they with prescribing PrEP?’ Because it’s not like prescribing a blood pressure medication, where I mean we all have blood vessels … being a PrEP provider takes a lot of social competency that not all providers are trained in just yet.

During the same session, Kenny expressed similar frustrations at this patient-provider gap, saying, “It’s just like I’m wasting my time … oh you set me up with this new provider to talk about PrEP but they don’t know. Where the bridge gonna come in at? … What’s my purpose in being here for?” Co-learners described how stigma and biases regarding both PrEP and sexual identity served to widen gaps between patients and providers. They explained that providers were often neither aware of nor willing to openly discuss these stigmas and biases with their patients. Because of this, co-learners felt it became their role to find a bridge to their providers.

However, co-learners stated that individuals taking PrEP should not be the only ones having conversations around PrEP, but that these conversations should include the wider community. During the third photo discussion session, Anthony shared his vision of community:

Community is a little bit like the food pyramid…you have different subgroups and … all different types of backgrounds … Just like that food pyramid, your entire diet would not consist of one particular food group, your entire community would not consist of one particular subpopulation. In order to have a well-balanced diet, you have to have a little bit of everything. And I feel like that’s what a community needs to have, that’s what community is. A well-balanced community has a balance of everything, some of everybody.

Co-learners emphasized the need for resources in their community in the Triangle, including CBOs, healthcare providers, and individuals to serve as bridges between PrEP users and the healthcare system to reduce barriers and strengthen patient-provider relationships. During the third photo discussion session, JT highlighted the valuable role of community organizations in creating “spaces where people can go and be supported and where that kind of exchange of information can occur … outside of a provider.” However, outside of TEC, co-learners were aware of only a few organizations in the community working actively to serve as a “bridge” between PrEP patients and providers. In light of this, co-learners emphasized their own role in fostering community empowerment and bringing information back to their home communities as they receive support and mentorship from TEC.

Discussion

“How Can We PrEP?” was a project carried out in partnership between TEC, a CBO serving Black LGBTQ+ community members in the Triangle, and students in a UNC-CH class. We aimed to gain a rich understanding of the community’s needs and experiences around PrEP and to support the work of TEC and other community organizations towards improving the lives of PrEP users in the Triangle region. Rich descriptions of the lived experiences of navigating PrEP in the Triangle for these men emerged from photographs and subsequent SHOWED discussions. Our findings also brought to light the structural factors that affect PrEP use and adherence, which we hope will inform future interventions to enhance PrEP uptake and adherence among Black MSM in the U.S. South.

Intersectional Stigmas: PrEP, Race, and Sexual Identity

First, overlaying our co-learners’ lived experiences was the intersectional stigma they faced. Stigma is closely tied to power differentials and occurs when human differences in personal attributes (e.g. sexual orientation) are associated with negative attributes or stereotypes in such a way that leads to a loss of status or to discrimination (Link & Phelan, 2001). Stigma becomes intersectional when a person’s multiple identities (e.g. sexual orientation, race, gender) are stigmatized at once in a synergistic, mutually constitutive way (Simien, 2007). A focus on intersectional stigma aims to counter “epistemologies of ignorance” by generating knowledge that considers how identities interlock and reflect social and structural inequality (Bowleg et al., 2017). Photovoice has been discussed as a specific methodology that can offer insights into intersectional stigma (Bowleg 2017).

Prior work has found that multiple intersecting forms of stigma influence mental and physical health, (Bowleg, 2017; Turan et al., 2019). For example, Black MSM living with HIV may be stigmatized by White communities due to their race, in Black faith-based communities due to sexual orientation, and in Black and gay communities due to their HIV status (Bluthenthal et al., 2012). Intersectional stigma has been found to contribute to HIV disparities facing Black men (K. G. Quinn, 2019). Yet most work to date involving intersectional stigma and HIV has focused on Black men living with HIV and has neglected those at risk for HIV. For instance, intersectional stigma has been found to influence HIV care engagement among Black men living with HIV, but fewer studies have explored its role in HIV prevention behavior, such as PrEP use (Elopre et al., 2018; M. Quinn et al., 2018). One recent study highlighted how stigma around PrEP use has been found to interact with other forms of stigma to affect PrEP access and, ultimately, HIV risk (K. Quinn, Bowleg, et al., 2019). Our study similarly found that stigma, biases, and assumptions around PrEP intersect with sexual identity stigma to create challenges for PrEP use and adherence among Black MSM. Future work should explicitly apply an intersectional lens to explore the influence of stigma on PrEP use among Black MSM (Turan et al., 2019).

In particular, our co-learners highlighted the important role of stigma toward PrEP itself. This has been documented in the intersectional stigma literature as well (K. Quinn, Bowleg, et al., 2019; K. G. Quinn, 2019). Others have explored the construction of PrEP stigma more explicitly, highlighting stigmatizing beliefs that PrEP users are less likely to use condoms, sexually promiscuous, or may be living with HIV (Eaton et al., 2017; Elopre et al., 2018; K. Quinn, Bowleg, et al., 2019). While the literature has not found that taking PrEP increases sexual risk-taking, stigmatizing norms around PrEP likely affect individuals’ decisions to take PrEP (Eaton et al., 2017). In our study, notions of PrEP as a “gay medicine” highlight the intersecting nature of PrEP stigma and sexual identity stigma for our co-learners. While one study similarly found that PrEP was often seen as a marker of sexuality, other literature has not directly addressed the intersection of PrEP stigma with stigma towards the LGBTQ+ community (Eaton et al., 2017; Elopre et al., 2018; K. Quinn, Bowleg, et al., 2019). Our work further reveals the need for future research around PrEP stigma to consider its intersection with sexual identity stigma, and the need for programs to work towards normalizing PrEP use outside the LGBTQ+ community.

Standardizing PrEP Care

Beyond previously-explored issues around PrEP access, we found that co-learners had difficulty receiving standardized medical information about PrEP (Cahill et al., 2017; K. Quinn, Dickson-Gomez, et al., 2019; M. Quinn et al., 2018). Previous research has focused on medical mistrust as a barrier to accessing medical care (Cahill et al., 2017; Elopre et al., 2018; K. Quinn, Dickson-Gomez, et al., 2019). Beyond this, our co-learners discussed that even when they accessed care, providers lacked information about PrEP. This has been observed in other settings. Blackstock et al. found that, while most providers are aware of PrEP in some capacity, only one-third had prescribed it or referred people to it, indicating there is a need for provider education (Blackstock et al., 2017). Calabrese et al. further highlighted how, even if providers are knowledgeable about PrEP, a lack of standardized prescribing practices exacerbates health inequities (Calabrese et al., 2017).

For our co-learners, PrEP care was influenced by experiences of intersectional stigma related to sexual and racial identity. Co-learners described frequent encounters with providers who not only lacked information about PrEP but were ill-prepared to serve LGBTQ+ populations. They described a lack of “social competency” among providers, which created challenges in terms of getting on PrEP, receiving continuous refills, and advocating for others in their community who wanted PrEP. Others have highlighted how racial bias may influence PrEP prescribing practices. For example, one study found that, providers often incorrectly assume that Black patients engage in increased unprotected sex when prescribed PrEP; this in turn reduces their willingness to prescribe PrEP to Black patients (Calabrese et al., 2014). The authors argued that standardizing PrEP discussions at primary care appointments can reduce both health inequities and PrEP-related stigma, while also transmitting PrEP knowledge to entire communities (Calabrese et al., 2017).

Bridging Communities and Clinics

Lastly, while most work to date has focused on increasing PrEP prescribing and referral patterns, co-learners vocalized the need to bridge gaps between clinics and communities through CBOs. CBOs with a high capacity to serve as this bridge include those directly providing HIV/AIDS services and prevention, substance use treatment programs, housing and job training facilities, and syringe-exchange programs, among others (Hosek, 2013). This approach has been supported and funded by the Centers for Disease Control and Prevention; lessons learned from CBO-led HIV testing and linkage to HIV care and treatment can inform CBO initiatives for PrEP (Hosek, 2013).

PrEP also presents an opportunity to improve health equity by collaborating with CBOs that serve historically-disadvantaged and marginalized groups. In fact, CBOs with experience in HIV testing, education, and referral are the most likely to also work with community members at the highest risk for HIV and are thus well-positioned to advocate for PrEP and connect clinics and community members (Hosek, 2013). For example, CBO representatives can serve as PrEP peer navigators just as they serve as peer navigators for patients living with HIV (Hosek, 2013; Mutchler et al., 2015). Through leveraging pre-existing collaborations with clinical care providers and community members, CBOs can not only connect communities with PrEP medication but can work to normalize PrEP and break associations between PrEP and stigma around sexual deviance and the LGBTQ+ community (K. Quinn, Bowleg, et al., 2019).

Strengths and Limitations

Our CBPR approach and Photovoice methodology prioritized social and structural inequities in our project’s narrative (Bowleg, 2017). It also centered the conversation around PrEP through our community co-learners’ framing rather than the student co-learners’ framing. While some of our resulting themes echo what is found in the literature, they also highlight how time- and place-dependent people’s experiences with PrEP care. For instance, by not asking directly about medical mistrust, as is often done, we elicited rich discussions about providers’ apathy and lack of attention to PrEP. This research also came about from students’ involvement in PrEP collaborations in the Triangle and arose out of TEC’s desire to explore the community’s PrEP experience. This has led to sustained engagement with TEC and multiple academic and community-based presentations at the local and national level with community co-learners (LeMasters et al., 2018, 2019; LeMasters & Hunter, 2019). TEC has also used this project to inform their trainings for PrEP navigators and ambassadors, to improve their policies and procedures for PrEP outreach in Durham, and to apply and receive grant funding for PrEP community outreach. Specifically, TEC has received additional funding from the National Minority AIDS Council and the National Library of Medicine for youth PrEP navigation and from AIDS United to expand PrEP education and linkage to care to Johnston, Orange and Granville counties through this project.

However, our work was not without limitations. We had a very small sample size of three. While this small sample size may limit the generalizability of our findings, the goal of our study was not to yield widely generalizable findings but rather to gain in-depth insights into the experiences of an important community for PrEP research (Hergenrather et al., 2009). Further, our small sample facilitated close collaboration over a prolonged period of data collection, which may have proven more challenging with a larger sample. As this research was done in partnership with TEC, our co-learners had access to targeted PrEP services and other resources through TEC and may have had different perspectives than the community of individuals using PrEP in the Triangle at large. For instance, while other work has found that young, Black MSM have a low perceived need to be on PrEP, we worked with individuals recruited through a CBO focused on HIV prevention and advocacy, so all co-learners acknowledged their need to be on PrEP and were excited about the opportunities that PrEP holds (Elopre et al., 2018).

Given our brief, semester-long timeline, TEC was cognizant of the need to recruit co-learners who had sufficient time to contribute in such a way that would not be burdensome (Israel et al., 1998). However, this short timeline prevented us from truly engaging community partners at all stages of the research process, such as coding of data (Israel et al., 1998). While our partnership has continued far beyond the semester, there is a need for future research to both recruit co-learners with a larger variety of lived experiences and to ensure that longer timelines can be accommodated.

Conclusion

PrEP use among Black LGBTQ+ men is low at around 10%, yet they are more affected by HIV than any other group in the United States (Centers for Disease Control and Prevention, 2020; Eaton et al., 2018). There is a need to deeply understand this disparity and to do so in partnership with communities that are the most affected, as this can affect the greatest change (Israel et al., 1998). This project serves as a critical first step in understanding the multi-level and intersecting factors that create Black MSM’s experiences with PrEP in the Triangle. As PrEP is a daily pill, it is critical that public health and clinical care professionals understand the daily lives of both those on PrEP and those at high risk for HIV but not on PrEP. There is also a need to purposefully integrate PrEP conversations into primary care visits and at CBO events. At the community level, we must identify resources that serve as a bridge between patients and providers and remove the onus placed on individuals to advocate for their health in the face of intersectional stigma. Through building partnerships with Black MSM, we can work in collaboration to change the narrative around PrEP, address intersectional stigmas, and reduce racial inequities in both PrEP use and in HIV.