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. Author manuscript; available in PMC: 2020 Jul 1.
Published in final edited form as: Soc Sci Med. 2019 Apr 30;232:86–93. doi: 10.1016/j.socscimed.2019.04.042

“The fear of being Black plus the fear of being gay”: The effects of intersectional stigma on PrEP use among young Black gay, bisexual, and other men who have sex with men

Katherine Quinn 1, Lisa Bowleg 2,3, Julia Dickson-Gomez 1,4
PMCID: PMC6588433  NIHMSID: NIHMS1528807  PMID: 31075752

1. Introduction

In the United States, reducing new HIV infections will require a prioritization of HIV prevention among young Black gay, bisexual, or other men who have sex with men (GBM), a population that continues to carry a disproportionate burden of HIV (Centers for Disease Control and Prevention, 2016). Between 2011 and 2015, HIV diagnoses among GBM remained stable overall, yet diagnoses among GBM aged 25 to 34 increased 30% (Centers for Disease Control and prevention, 2018). Furthermore, despite having fewer sex partners and HIV-related risk behaviors than their White counterparts (Friedman, Cooper and Osborne, 2009), half of Black GBM are projected to acquire HIV in their lifetime, compared to 25% of Latino GBM and just 9% of White GBM (Hess et al., 2017).

In 2012, the Food and Drug Administration approved the use of Truvada for HIV pre-exposure prophylaxis (PrEP), yet there are disparities in PrEP use that reflect those seen in HIV incidence. Of the 1.1 million persons estimated to be candidates for PrEP, 45% are Black (Smith, 2018). Yet, PrEP use is lowest among Black Americans (Jenness et al., 2018; Smith, 2018); nearly six times as many White individuals than Black individuals have been prescribed PrEP. In 2016, just 11% of PrEP users were African American, compared to 13% Hispanic/Latino and 69% White (Huang et al., 2018). Additionally, young Black GBM have an 84% reduced odds of having ever used PrEP in comparison to young White GBM (Kuhns et al., 2017).

Low PrEP awareness and uptake, particularly among young Black GBM, may be attributable to intersectional stigma. Initially described by sociologist Erving Goffman, stigma is the social identification and disapproval of a physical, behavioral, or social trait, which often manifests in marginalization or discrimination (Goffman, 1963). Stigma is best understood in relation to the social and structural conditions and institutions that contribute to social exclusion and disapproval (Parker and Aggleton, 2003) as it represents broad social processes and power relations (Herek, 2002). Intersectional stigma has emerged from intersectionality scholarship (Crenshaw, 1991; Cole, 2009; Bowleg, 2012) to explain how persons can experience marginalization and discrimination due to multiple stigmatized identities (e.g. race, sexual orientation, economic status; Logie et al., 2011). Intersectional stigma can occur at multiple levels of influence (interpersonal, community, and structural levels), and is based upon co-occurring and intersecting identities or conditions (e.g. HIV status, race, age, disability, sexual orientation; Turan et al., 2017; Rice et al., 2018). An important distinction to make is that it is not an individual’s intersecting identities that contribute to marginalization, but rather the social positions, privileges, power, and oppression (e.g. racism, classism, heterosexism) associated with those identities that contribute to inequalities (Bauer, 2014).

The relationship between intersectional stigma and PrEP has not been sufficiently studied, but it likely mirrors that of intersectional stigma and HIV risk (Haire, 2015). Young Black GBM are particularly vulnerable to the effects of stigma, as they often must navigate multiple social oppressions (Diaz, Ayala and Bein, 2004). For example, heterosexism, masculinity, and gendered social norms may place young Black GBM at risk for homonegativity that can increase stress, limit social support, and make it difficult to be open about same-sex relationships (Rosario et al., 2006). Additionally, due to racism, Black GBM are often excluded from the primarily White gay community, which limits their access to important informational and protective networks (Voisin et al., 2013), and potentially to PrEP. The intersectional stigma faced by Black GBM may also affect their interactions with the healthcare system; perceived and anticipated racism and/or homonegativity from health care providers contributes to medical mistrust, disengagement from the healthcare system, and skepticism surrounding PrEP (Quinn et al., 2018).

In addition to racial and sexual identity stigma, Black GBM may also face PrEP stigma. Researchers have demonstrated that PrEP stigma, the perception that PrEP is only for promiscuous, irresponsible individuals, may be higher among Black individuals compared to those in other racial or ethnic groups. Neighborhoods with greater PrEP stigma tend to have a higher concentration of racial minority residents (Mustanski et al., 2018). Collectively, these stigmas reflect community and social norms and are rooted in power inequities and systems of oppression that undermine the health and well-being of marginalized groups. Importantly, an intersectional approach to understanding stigma considers how systems of oppression work together to produce or uphold inequality and privilege (Cole, 2009). Stigmatizing environments and internalized stigma can reduce motivations to use condoms (Smith et al., 2012) and may similarly reduce motivations and opportunities to seek out PrEP.

Yet, minimal research has explored the relationship between intersectional stigma and PrEP awareness and uptake among young Black GBM. In this qualitative study, we aim to develop a richer understanding of the experiences of young Black GBM and the ways in which intersectional stigma affects perceptions of and decisions about PrEP use. We seek to understand how the intersection of racism, homonegativity, HIV stigma, and PrEP stigma collectively affect HIV risk and prevention opportunities for young Black GBM.

2. Method

This is a qualitative study aimed at understanding how intersectional stigma affects PrEP awareness and uptake among Black GBM, aged 16 to 25. Focus groups were used to facilitate conversations around PrEP and experiences of stigma, identify and discuss diverse perspectives on PrEP, and enhance our understanding of PrEP barriers through interactions and sharing of diverse opinions (Patton, 2015). The lead author, who also designed this study, is a White, heterosexual, cisgender female. Two research associates who identify as Black GBM assisted with the development of the focus group guide, ran the focus groups, and assisted with data interpretation.

2.1. Study setting

This study took place in Milwaukee, Wisconsin, a city that, like many urban areas of the United States, experiences significant racial disparities in HIV. In 2016, the HIV diagnosis rate for Black men was four times higher than White men and the median age at HIV diagnosis was 28 (Wisconsin Department of Health Services, 2017). Milwaukee is among the most racially segregated cities in America (Frey, 2019). In Milwaukee County, more than half of all Black men in their 30s and 40s have a history of incarceration (Pawasarat & Quinn, 2013). High schools in Wisconsin suspend Black students at a higher rate than anywhere else in the country and Milwaukee suspends Black high school students at a rate nearly double the national average (Losen et al., 2015). Although these statistics are not available about Black gay men specifically, the general trends provide a context for what all Black men face living in Milwaukee. Thus, we situate the experiences of the men in this study within the context of institutionalized inequity and historical and political patterns of power inequity and racism.

2.2. Recruitment and study procedures

In late 2017 and early 2018, we conducted six focus groups with 44 young Black GBM. Focus groups are useful in revealing cultural norms and expectations and the interaction of participants can increase the depth of our understanding on barriers and attitudes toward PrEP. Inclusion criteria required that participants identify as Black or African American, were assigned male sex at birth, identified as gay, bisexual, or have had sex with another man in the previous 24 months, were between the ages of 16 and 25, and reported an HIV-negative or unknown HIV serostatus. Current and former PrEP users were eligible. A convenience sample was recruited through partnerships with HIV, LGBT, and youth-focused service providers that work with the young Black GBM community, as well as through outreach on Facebook. Recruitment materials advertised focus groups aimed at understanding young Black GBM’s experiences with healthcare and HIV prevention. Interested participants were screened for eligibility by phone and scheduled for a focus group. Prior to the start of each focus group, individuals completed a brief demographic form and the informed consent process. Given the stigmatized nature of HIV, PrEP, and sexual orientation, we received a waiver of written consent. Groups were held in community settings and conducted during weekend and evening hours to accommodate school and work schedules and lasted approximately 90 minutes. Upon completion of the group, all participants received $50. The research protocol was approved by the Institutional Review Board at the Medical College of Wisconsin.

2.3. Focus group content

A semi-structured focus group guide was used to ensure consistency in wording and sequence of focus group questions, while allowing facilitators to ask additional probing questions and follow group conversations as needed. The focus group guide was used to examine how intersectional stigma manifested in the lives of young Black GBM to affect perceptions of PrEP. The study conceptualized intersectional stigma as being inclusive of racism, homonegativity, HIV stigma, and PrEP stigma, although many men also faced stigma surrounding socioeconomic status, mental health, gender identity, or other marginalized identities. The focus group guide had five sections: 1) introduction to PrEP, 2) willingness to take PrEP or support a partner’s PrEP use, 3) perceptions and stereotypes of PrEP users, 4) perceived barriers to PrEP use, and 5) healthcare utilization patterns and barriers. There were several structured questions in each section, along with numerous optional prompts. Despite such elements of structure, the facilitators had flexibility to follow the conversation of the group. We approached the focus groups through an intersectional paradigm and were attentive to participants’ intersectional identities as young Black GBM. For example, we asked focus group questions that encouraged intersectional thinking including prompts such as, “think about all aspects of your identity including your race, gender identity, and sexual identity” when we discussed experiences of discrimination, marginalization, and social exclusion. Additionally, we explicitly asked about how they perceived their experiences to differ from those of Black heterosexual men or White gay men. Groups began with a short introductory video on PrEP (https://ci3.uchicago.edu/blog-miprep-app/). This initial presentation was followed by a structured focus group discussion to elicit participants’ general attitudes toward PrEP and PrEP users, identify barriers to PrEP, and understand how intersectional stigma may affect PrEP use among young Black GBM.

2.3. Data analysis

Focus groups were audio-recorded, transcribed verbatim, and coded using MAXQDA qualitative analysis software. We used a team-based multi-stage analytic coding strategy (Corbin and Strauss, 2015). As an initial stage of analysis, we coded transcripts with the characteristics of group members collected from the demographic surveys (e.g. age, ethnicity, sexual orientation, PrEP history, income). This process allowed us to discern whether any differences in groups could be attributable to participant characteristics (e.g. age or education level). Then, a team of three independent coders (including the first author), utilized open coding by coding transcripts from two focus groups line-by-line and generating an initial codebook. We then applied the initial codebook to two of the focus group transcripts, discussed discrepancies, and refined the codebook until we reached inter-rater reliability of 80%. The final codebook included a total of 25 parent codes and 46 subcodes and consisted of a combination of emergent codes (e.g. infidelity, promiscuity) and a priori codes from public health literature (e.g. medical mistrust, internalized homonegativity) to categorize the data (Saldana, 2016). Additional codes included: barriers to PrEP (including subcodes of PrEP stigma, lack of support, and perception of need), benefits of PrEP, homonegativity (including ‘down low’, homonegativity within the Black community, and anticipated homonegativity), and race (including subcodes of racism, discrimination by race, and differences by race). Axial coding was used to identify dominant codes, and group and draw connections among codes (Boeije, 2002). We coded all six focus group transcripts three times to refine codes and ensure adequate application of codes. Coded focus groups were then analyzed using thematic content analysis (Braun and Clarke, 2006).

3. Results

Forty-four young men participated in six focus groups. The size of the groups ranged from five to eleven participants. Thirty-five participants identified as non-Hispanic Black or African American. Four identified as multi-racial (Black/African American and either White, Asian, or Native American) and five were Black Hispanic/Latino Black. The average age of participants was 22 (SD=2.3; range 18–25). Seventy-five percent (n=33) identified as gay; others identified as bisexual (n=8), pansexual (n=1), no label (n=1), and straight (n=1). Twenty of the 44 participants (48%) had a high school diploma or equivalent; five had less than a high school degree, 14 had some college, four had college degrees, and one chose not to answer. Over two-thirds (n=36; 81%) were working full or part-time; half the participants (n=22) earned less than $10,000 per year. Two participants were former PrEP users and eight individuals were currently taking PrEP. There was at least one PrEP user in every group, although PrEP use was only captured in the demographic surveys and current or former PrEP users were not necessarily known within the group. Most PrEP users did reveal their PrEP use to the group during the conversation. Our analyses revealed few differences between PrEP users and those who had never used PrEP, with participants citing similar experiences with intersectional stigma.

This research examined how intersectional stigma affects perceptions of and access to PrEP among young Black GBM. Analyses highlighted the complex ways in which racism and homonegativity influenced access to health care, perceptions of sexual health, and sexual and romantic relationships. Analyses revealed four primary ways that intersectional stigma can manifest to act as a barrier to PrEP use among young Black GBM: 1) Mistreatment within the healthcare system; 2) PrEP as a marker of sexuality; 3) Societal racism and inequality; and 4) Othering and HIV stigma. Our results are organized around these themes and excerpts from the six focus groups are used to illustrate these themes and demonstrate how intersectional stigma affects perceptions of and decisions about PrEP use.

3.1. Mistreatment within the health care system

Anticipated and experienced racism and homonegativity from healthcare providers was one of the most prominent barriers to PrEP use that participants in this study identified. Participants discussed how, as Black GBM, they received inferior healthcare treatment in general, which contributed to hesitations about accessing PrEP.

P1: Being a Black man is hard, period. I just don’t trust other doctors or something that ain’t my doctor. Like, search me, get me in a gown, none of that. It’s a trust issue. And I just feel like, you know. I just feel like African Americans have it hard, period. Like, coming out. I came out to my, I’m mixed, but my African American side of the family. Like, it was hard. All my brothers, you know. It was a lot. So I just feel defensive all the time.

P4: We don’t have the same experiences of others because we don’t open up to our doctors.

Facilitator: Why?

P4: The judgment. Even though they’re health care professionals and not supposed to judge, some people still judge, and the fear of being judged by a doctor is, … yeah.

Facilitator: And that is, you think that’s kind of like something culturally with us?

P4: It’s culturally in, not only the fear of already being Black plus the fear of being gay.

P3: It’s a lot. [Focus group three]

In this excerpt, participants described the race and sexuality-based discrimination they faced in accessing healthcare as Black GBM. As Black men, they are subject to race-based judgment and mistreatment from health care providers, contributing to medical mistrust and anticipated discrimination. Furthermore, as gay men, they are expected to disclose their sexual orientation to physicians, with whom they already have limited trust. Participants in focus group six similarly discussed anticipated homonegativity from physicians.

P1: ‘Cuz what if the doctor has homophobia?

P7: In all types of medical services, whether you’re going to see a doctor, or if you’re like donating blood or plasma, all these different things, your sexuality can come into play with all these different things. So, like, even for myself and some of my own, like, privileges of, like, being able to be perceived in a different way than I actually am. So I can go in there and be a straight man if I want to. And that’s like my own privilege of those things. That if I chose to market everything the way I want to or they could quote/unquote “see it” or whatever, then I might be treated differently, so. [Focus group six]

For most participants, the intersection of their race and sexual identity was such that they were denied the privileges generally afforded to heterosexual White men. Yet, this participant (P7) described the advantage of being able to be perceived as a gender-conforming heterosexual man. This privilege, however, is not available to GBM who do not conform to normative masculine gender identities or roles. The ability to conceal his sexual identity allowed this participant to minimize the risk of discrimination or mistreatment, although concealing sexual identity within healthcare settings can also limit needed medical care, including PrEP.

3.2. PrEP as a marker of sexuality

Intersectional stigma was also evident in norms around sexuality, the perceived association between PrEP use and being gay, and the potential consequences associated with being ‘out’. Among these participants, PrEP was considered a marker of sexual identity and formalized one’s connection to the gay community. As participants in focus group six explained:

P7: It’s just like, known as a gay pill.

Facilitator: And do you think that creates a barrier?

P3: Of course.

P7: Yes! The stigma. Because it isn’t advertised to other identities and stuff. Someone who may not be LGBT-identified or gay may have to hide [PrEP] because they don’t want to explain to their parents what this is. If they do, then it gets into this whole conversation, ‘Well, why do you need this?’ And like, I can see it creating barriers just like that. [Focus group six]

The connection between PrEP and being gay is particularly problematic for young, non-gay-identifying individuals, who could potentially be ‘outed’ to parents or friends if their PrEP use was discovered. When asked why more young Black men were not taking PrEP, participants noted:

P1: They downlow. They don’t want their family knowing, their friends knowing [that they are gay]. Or they probably just steppin’ into the gay world and they uncomfortable with theyself.

P3: They have issues with liking theyselves.

P2: And they don’t wanna leave their lives. “I’m a guy who’s straight, but I have sex with guys”. I can’t. [Focus group two]

As evident in the conversation above, participants not only raised concerns about younger men who do not want to disclose their sexuality to friends and family, but also “downlow” men. Participants frequently located the racial disparities in PrEP in other Black men whom they described as ‘downlow’ men who “don’t wanna leave their lives” and privileges as straight men, as well as those who have low self-esteem, rather than focusing on the previously described racism and homonegativity they face in health care. This conversation continued:

P4: I think they’re scared because when I was 16, I mean, even though I had a boyfriend and shit, I was still tryin’ to be comfortable with myself becoming a man at that age. Yeah, I think they just be scared!

P3: When they more confident with theyself, been there did that.

P1: And then you have someone who’s still learning the ropes, so you know, that’s a little intimidating. [Focus group two]

The intimidation and fear participants described reflect the stigmatization of the gay community and societal racism and homonegativity that make it difficult to be a Black GBM. The challenge is not simply in the lack of self-confidence as participant three (P3) described, but rather in the stigmas, risks, and consequences they will face as openly gay Black men, which make it difficult to come out. As described in the previous section, accessing PrEP requires that individuals perceive themselves to be at risk for HIV and disclose this to a physician. Yet the anticipated mistreatment from health care providers, coupled with the societal consequences of being openly gay Black men, create significant barriers to PrEP for these young men.

As a result of this homonegativity, participants also discussed the need for Black GBM to advocate for and educate other Black GBM about PrEP and act as support systems for younger men who could benefit from PrEP. This view was particularly evident among the participants who were current PrEP users and described wanting to educate their peers and reduce the stigma surrounding PrEP. For example, when discussing the limited awareness of PrEP among their peers and their willingness to educate their friends about PrEP, one participant, a current PrEP user, described the importance of peer education and noted how a lack of knowledge about PrEP can lead some individuals to believe PrEP was not intended for them.

P2: I feel like if you’re not educated on a specific topic, or if you’re unsure or unaware of something that you just generally don’t know anything about, we as human beings, we just automatically assume, ‘okay, since we don’t know anything about it, then it’s not for us.’

Verbal group agreement

Facilitator: Before you keep going, when you say ‘us’, do you mean, human beings or Black people?

P2: I just feel like, it’s mainly with us [hand motion to indicate the young Black GBM in the room]. It’s like we have to educate ourselves, make everybody aware and just educate them so that they don’t feel ashamed, ostracized, when they go to these clinics. [Focus group three]

As this participant described, when individuals do not feel knowledgeable about PrEP, it not only makes them feel as though PrEP is “not for [them]”, but it also contributes to shame when seeking out PrEP in clinic settings, as limited knowledge can make men feel uncomfortable or uncertain inquiring about PrEP. This participant believed it was up to Black GBM to educate themselves and each other about PrEP to reduce such feelings. In another group, participants similarly described the need to educate peers, particularly younger peers about PrEP, despite their own limited knowledge.

P5: I think that, what’s it called again? PrEP! (Group laughing). It’s really big, it’s huge. I think we need to get better at knowing what it is. Especially like the older LGBT cats. We got a lot of houses and stuff like that. There’s a lot of like young guys out here that’s finding their self at a very early age now… they’re more advanced. So everybody fucking in there, and that’s the truth. You know, we can have these houses with these gay kids who we call our sons and we see them having sex and you know they’re active. The older cats, they not really protecting themselves so they can’t really educate nobody on it. But I just think that we should all do a better job in the LGBT community about learning about PrEP and teaching our younger kids about it [Focus group four].

Prior to the focus group, the participant above knew little about PrEP. Despite his initial limited knowledge, much like the discussion in focus group three, this participant placed responsibility for PrEP uptake on the Black GBM and LGBT communities. Participant five (P5) focused on the need for leadership within the gay community to mentor younger men on HIV prevention, and specifically mentioned the role that “houses,” can play in HIV prevention. The house community is comprised of informal networks that provide systems of kinship and family structure and support to Black gay men and they play an important role in offering support to younger Black GBM, particularly those who have faced disenfranchisement from biological and other heteronormative support systems (Young et al., 2017).

3.3. Societal racism and inequality

The challenges associated with openly identifying as being gay were complicated by the racism and social inequality participants faced. Participants described how they have lived in a society that devalues their race and sexuality, which can make them vulnerable to prejudice and discrimination and make it difficult for them to be open about their sexuality. Participants discussed the unique concerns they had as Black men considering PrEP.

Facilitator: Why do you think there is such a wall up for people when it comes to trying to learn more about PrEP in the [Black] community?

P3: People just getting judged and feel like they gonna be judged. Other people gonna think they got it [HIV].

Facilitator: Do you think it’s like that in every community? Black, versus White, versus Latino?

P1: Yeah, and I think it’s also more [stigma] in African American community because, like, I just feel like just being African American, being gay, like just that stuff that happened throughout my past, like being judged and battered and stuff, it kinda made me tough. So, when I have a lot of gay friends and whatnot, they like, they, betray you and so forth. Like, just, I don’t know. We bash each other, but it’s more I think in the African American community. [Focus group three]

As this exchange illustrates, the anticipation of judgment and stigma around HIV and PrEP in the Black community stems partly from a long history of mistreatment and participants’ own experiences of ‘being judged and battered’ and ‘betrayed’ as gay Black men. The combination of societal racism and homonegativity contributed to young men’s feelings of anxiety, defensiveness, and low self-worth. Stigma is experienced differently depending on the source. For men with multiple marginalized identities, like these participants, being stigmatized by groups to which they belong (in this case, the Black and gay communities) may have significant implications. The narrative above highlights the fears of judgment and hierarchy within their own communities. Not only did participants contend with racism and homophobia in broader society, they also faced marginalization within the, largely White, gay community.

Participants were directly asked about the racial disparities in PrEP use and why they thought there were more White than Black or Hispanic men taking PrEP. While there were discussions of personal responsibility and self-worth, participants also pointed to the effects of social and structural disadvantages, including poverty, unemployment, and racial segregation.

Facilitator: Okay, so let me ask you this. More White men than Black men and Hispanic men are taking PrEP. Why do you think so? Why you think that is?

P4: I think because in our [Black] community we have a lack of, um, well, we do have unemployment issues, we do have underemployment issues, and a lot of health care coverage is full time, 40 hours a week, and that’s just something that, that can impact us more.

P2: I agree.

P6: I don’t wanna say resources, because, like, everybody have the same, you know, seem like everybody got the same resources. I was thinkin’ like resources, you know, ‘cuz like you said, you know, the Black community, we gotta lot of stuff on our plate. And not to say, you know, Whites don’t have a lot on their plate either but, you know, we’re dealing with unemployment, finding jobs, you know, the hood. All the extra stuff, stuff. A lot of stuff that’s on our plate, and so we not really carin’ about PrEP, or whatever. And so we, you know, I don’t wanna say like White people … [Focus Group four]

Although participants generally recognized the value of PrEP, they also described how structural racism and systematic disadvantages contributed to competing demands and barriers to PrEP. Across all six groups, men described simply having other priorities including employment, housing, and dealing with social and family issues. They perceived White men as not having to handle these issues to the same extent and therefore having the luxury of being able to think about preventative healthcare. As one participant in focus group five said, “That’s why [White people] are able to be on PrEP. Because they have access, they have the money, they have the families for this stuff.” Thus, it was not necessarily that participants were “not really carin’ about PrEP”, but rather that they faced more fundamental priorities and daily concerns.

3.4. Othering and HIV stigma

In addition to the barriers described above, PrEP’s link to HIV and the stigma surrounding both limited PrEP’s use. As alluded to earlier, participants in this study described those living with HIV as ‘sick’, ‘risky’, and ‘irresponsible.’

P3: I wanna talk about this one thing I thought about. And a lot of people don’t know this. Do you know how many medical kills we got here? Like, how many people, literally, how many times have you been on like Jack’d [online dating site] or something like that and been hit on by somebody that will be like, ‘with or without a condom?’ That’s their mission is to have sex with as many people as they can to spread that virus. [Focus group one]

The ‘medical kills’ he described are individuals living with HIV who are believed to purposefully try and spread the virus to others. Although this belief was not echoed in other groups, this excerpt reflects the stigmatization of HIV and some of the beliefs participants held about people living with HIV (PLWH). The conversation around PLWH and HIV stigma continued:

P2: We just have so much stigma around [HIV].

P3: Yes! The stigma’s what’s kept us away from …

P2: The stigma is what kept everybody apart. Like, ‘Girl [an affectionate way to refer to other gay men], she’s sick. I can’t date her.’

P1: Shit, she gonna cough and I’m gone. [Focus group one]

Across focus groups, participants overwhelmingly expressed reluctance to date or have sex with PLWH, regularly describing them as ‘sick’. Although some participants had friends or former partners living with HIV, they generally tried to distance themselves from PLWH.

As a result of HIV stigma, participants tended to believe that while others in the community should be taking PrEP, they did not need it themselves, as HIV stigma and PrEP stigma were closely intertwined. In all six focus groups, discussions around PrEP users often started out positively, describing current PrEP users as “responsible,” “mature,” and PrEP as something men “shouldn’t be ashamed of.” Despite this initial positive discourse, as the groups continued, conversations revealed a more complex view of PrEP. When asked who they thought should be taking PrEP (in contrast to describing current PrEP users), participants described individuals similarly to how they described PLWH: “the trades, the hoes,” and individuals who “just don’t have value of themselves… just out here, no condoms.” HIV and PrEP stigma often prevented individuals from seeing themselves as potential PrEP candidates, despite recognizing its benefits. This disparity was evident in the following excerpt:

P2: The thing for myself is that I don’t take it, but I tell other people to. It’s just like every chance I get I try to tell somebody, you know, try to educate them on what it is and what it does and what it can do for them.

Facilitator: So why do you not take it if you tell all your friends they should?

P2: Because I feel like I’m one of those people who does value myself. You know, I go to my doctor visits, I do what I have to do to know, you know, what’s going on with me and my health. But, you know, the next person might not be, so I always try to tell people, you know, when they bring it up, like, ‘Girl, what about PrEP?’ Like I got one of my friends to take it because I said something about it. [Focus group two]

Focus group participants perceived themselves to be at lower risk for HIV and have fewer sexual risk behaviors compared to their peers and the ‘others’ they talked about. Such an outlook may reflect optimistic bias (Weinstein, 1987), wherein participants overestimate their peers’ sexual risk behaviors while underestimating their own risk and need for PrEP. They frequently described themselves as having higher levels of self-worth (e.g. “I’m one of those people who does value myself”) and having greater knowledge about HIV prevention than others. This process of othering, the distancing of themselves from those who ‘needed’ PrEP, was rooted in deeper stereotypes about PrEP as intended for individuals who frequently engage in condomless sex with multiple sexual partners. Given what, and for whom, they perceived PrEP to be, many participants viewed themselves as not needing PrEP.

HIV stigma and the perceived consequences associated with having HIV (e.g. alienation) were so profound that even considering oneself to be at risk for HIV and using PrEP to prevent HIV was problematic for many participants. Noting that Truvada could be used both for HIV prevention and treatment, participants feared being characterized and stigmatized in the same manner as PLWH. As a participant in focus group one said, regarding Truvada, “It’s the sick pill. I mean, that’s the number one thing the girls [other gay men] are sayin’. ‘Bitch, are you takin’ the sick pill?’” Other participants described how they passed judgment on PrEP users, questioning whether they were taking PrEP or actually treating HIV.

P1: I’m gonna be honest. I had a partner that was on PrEP, and I judged him, and I thought that he was HIV positive. But he wasn’t, and he was just taking it himself just if anything was to happen. And that’s how I kinda started reading about it is that.

Facilitator: Really?

P1: Yeah. I was judging him and everything. So that’s why I say that.

Facilitator: Did it cause you guys to have like a heated—and not to get into your business-

P1: It was. It was a heated argument. We were arguing, and it was like, “Prove to me that you ain’t got it [HIV] by going to get tested.” And he proved it, and then I learned about it. [Focus group three]

The fear of being stigmatized for taking PrEP was often rooted in participants’ own stigmatization of PLWH. Being perceived as living with HIV had social and romantic consequences including rejection, isolation, and ostracization. Much like PrEP stigma, HIV also carries connotations of promiscuity and irresponsibility. Several participants similarly acknowledged that they judged their own partners and friends who were on PrEP and suspected some people who said they were taking PrEP were actually HIV-positive. Participants recognized the potential damage of having an association with HIV to their reputation, sex lives, and romantic relationship, such that additional efforts to prevent HIV (i.e. PrEP) were similarly stigmatized.

HIV stigma was closely tied to discussions about condom use and sexual responsibility. Public health campaigns have successfully promoted condom use over the last three decades so that participants trusted condoms to protect them from HIV. Participants described condom use as normative and those who explicitly refused condoms were described as ‘hos’ and ‘nymphos’ who were ‘irresponsible’. This is not to say that focus group participants did not recount their own ‘slip-ups’ or periods of time when they did not use condoms, yet they noted that condom use was generally expected, especially in random hook-ups and brief sexual encounters. For example, in focus group two, participants discussed their friends and peers who refused to use condoms. As one participant said:

P4: You know, in the crew, you havin’ sex without a condom, and you just free about it. It’s like, if you gonna be a ho you know, you gonna be like that, be discreet.

Group laughter and agreement

P4: Don’t be like “I don’t care, I don’t need no condom.” Uh, you need that for your life, ‘cuz, you know, you look bad. [Focus group two]

Those who regularly had condomless sex violated social norms and were described as the type of people who should be taking PrEP. Participants recognized that individuals who engaged in condomless sex, and were willing to talk about it, were stigmatized, and use of PrEP was seen as a public acknowledgment of having condomless sex.

4. Discussion

One of the central tenets of intersectionality is that the individual experiences of people at multiple marginalized intersectional positions are differentially shaped by social and structural inequality (Crenshaw, 1991; Collins, 2015). Applied to HIV risk among young Black GBM, intersectionality highlights the importance of looking beyond individual-level factors such as risk behaviors and condom use attitudes and necessitates examining the social and structural factors that contribute to and reinforce HIV inequities (Link and Phelan, 1995; Bowleg, 2017). Our results highlight the importance of considering intersectional stigma in efforts to increase PrEP use among young Black GBM. Perspectives on PrEP were shaped by participants’ intersecting experiences with racism and homonegativity within the context of a city with extreme disparities in healthcare access, socioeconomic status, educational attainment, incarceration, and HIV (Chen et al., 2012).

Participants described the societal stigma and challenges they faced as Black GBM, including mistrust of the health care system, racism and homonegativity, and social inequities such as unemployment and unequal access to education. Participants’ perceptions of PrEP must be viewed in the context of living in a mid-size Midwestern city plagued by extreme racial inequalities. For example, participants perceived White men as having greater access to resources and having the luxury of being able to even think about and afford PrEP. Even current PrEP users described living in environments characterized by inequitable resources and poverty and described numerous social and structural obstacles to PrEP that White men did not face, including the association between PrEP use and ones’ sexual identity. Not only was PrEP use indicative of sexual promiscuity, it also ‘outed’ men as gay and opened them up to HIV-stigma. Participants described the challenges associated with being gay as Black men, the need to conceal their sexuality, particularly for younger men, and the challenges to coming out as Black men. Although disclosure of sexual orientation to a provider is associated with greater PrEP knowledge (Arrington-Sanders et al., 2016), numerous systems-level barriers (e.g. lack of routine assessment of sexual orientation and lack of culturally competent health care providers) can inhibit disclosure to providers (Khalili, Leung and Diamant, 2015).

The confluence of racism and homonegativity they faced influenced participants’ decisions about sexual identity disclosure, access to health care, and perceptions of PrEP. This concept was evident in several focus groups where men talked about how their experiences as Black gay and bisexual men differed from those of White men, citing their feelings of defensiveness and mistrust of the health care system. Results of this study build on our previous research (Quinn et al., 2018) to demonstrate how medical mistrust exists within the context of additional stigmas. For example, decisions about disclosing sexual identity to a physician are rooted in and reflect additional social conditions like racism and HIV stigma. Thus, individuals’ experiences with exclusion and discrimination may influence patient-provider relationships and willingness to use PrEP.

Despite generally high regard for PrEP, several participants in this study reported reluctance to use PrEP themselves and expressed deeply engrained stereotypes about men who were, or should be, using PrEP. For example, their association between PrEP and perceived “promiscuity” revealed participants’ stereotypes about gay men, and particularly HIV-positive gay men. This stigmatizing discourse has been associated with gay men and HIV since the start of the HIV epidemic and has continued to persist as ‘other’ gay men living with HIV are portrayed as promiscuous and irresponsible (Courtenay–Quirk et al., 2006; Smit et al., 2012). Othering is the process of differentiation, subordination, and exclusion, whereby individuals reinforce notions of their own ‘normality’ using other, often stigmatized or marginalized individuals or groups, as a point of deviance (Weis, 1995; Grove and Zwi, 2006). In seeking to protect themselves against HIV stigma, HIV-negative gay men may distance themselves from gay men living with HIV, creating two seemingly distinct groups: ‘them’ who are living with HIV, and ‘us’, who are not, nor are at risk. This process of ‘othering’ is associated with adverse health outcomes, lower rates of HIV status disclosure, and exacerbation of high-risk behavior among PLWH (Smit et al., 2012).

In some social circles, the promiscuity discourse has now been extended to PrEP users, who are seen as equally irresponsible as men living with HIV, despite the fact that PrEP is an additional source of protection against HIV. Several men in this study not only positioned themselves as being distinct from men living with HIV, but also differentiated themselves from men who use PrEP. Participants cited their own self-worth, engagement in healthcare, and consistent condom use as reasons they were not using PrEP and described PrEP users as “irresponsible” and sexually “promiscuous”. Damaging epithets and stereotypes about PrEP users made it difficult for individuals to recognize their own risk for HIV or see how they might benefit from PrEP. This attitude may reflect optimistic bias, wherein individuals believe their risk for HIV is lower for themselves than for others with similar behaviors (Weinstein, 1987), and subsequently believe their need for PrEP is lower than that of others. Individuals often underestimate their risk for HIV (Gallagher et al., 2014), which may influence decisions about PrEP. Acknowledging that one is at risk for HIV may contribute to feelings of guilt and shame and the strength of stereotypes about who is or should be using PrEP may reinforce individuals’ perceptions of risk and need for PrEP. This process of othering may, in part, be an effort to protect oneself against the ostracization and alienation associated with HIV and PrEP (Flowers, 2001). Furthermore, this differentiation may also help young Black GBM maintain their own status and respectability in a society in which they already face multiple forms of stigma (i.e. racism and homonegativity).

In some regards, the perceptions of PrEP users as ‘risky’ is understandable, as PrEP is only clinically indicated for use by a subgroup of individuals who are, indeed, at increased risk for HIV (Centers for Disease Control and Prevention, 2017). Thus, someone who is ‘responsible’ and using condoms or has few sexual partners is perceived as not needing PrEP. Condoms, although inconsistently used, have become a moral standard such that openly acknowledging not using condoms, perhaps indirectly by way of using PrEP, opens an individual up to additional stigma that many men do not want to or cannot contend with (Dubov et al., 2018). There is a strong perception among Black gay and bisexual men that PrEP will contribute to greater sexual risk-taking (Eaton et al., 2017), which can effect whether people perceive themselves to need PrEP (Adams et al., 2015). This association between PrEP and risky sexual behavior contributes to PrEP stigma and beliefs about PrEP users as promiscuous. Using PrEP is an acknowledgement that one is at risk for HIV transmission, and communicates to others that they engage in condomless sex, which is stigmatized and seen as a violation of perceived social mores (Dubov et al., 2018).

4.1. Limitations

This study has multiple limitations, such as the fact that focus group responses may have been subject to social desirability bias. Participants who have minority viewpoints may be less inclined to speak up when surrounded by their peers, particularly when discussing stigmatizing topics. Our findings may also be influenced by the age range of participants. Individuals aged 16 to 25 were eligible, yet we were unable to recruit 16- and 17-year olds through the recruitment approaches used. Younger individuals may face greater stigma than those who participated, particularly associated with sexual identity, and may be less willing or able to openly discuss challenges associated with sexual or gender identity in a setting like a focus group. Similarly, their access to information about research studies and their ability to participate discretely, without parental knowledge, may be more limited. Our findings would similarly benefit from additional information that was not collected in the demographic surveys. For example, we do not know participants’ risk behaviors, risk reduction practices, or whether they have a primary care provider. This information would be useful in understanding perceptions of PrEP. Finally, participants for this study identified as Black, African American, or mixed-race, with one of those races being Black. As a result, four identified as mixed race and five reported also being Black-Hispanic. The cultural differences associated with race and ethnicity may contribute to differing views, norms, and expectations around sex and PrEP that cannot be explored in this study.

5. Conclusions

PrEP use among Black GBM is low; only about 30% of Black GBM are aware of PrEP and only 10–20% are accessing PrEP (Eaton et al., 2018). Multi-level interventions are needed to address the societal stigmas and inequities facing young Black GBM and increase PrEP use among Black GBM. Interventions to mitigate intersectional stigma and its consequences can cultivate environments in which young men are able to access quality healthcare, including PrEP, without judgment or discrimination. Although there have been few interventions designed to address intersectional stigma, lessons can be learned from other stigma-reduction interventions. For example, creating supportive youth spaces (Miller et al., 2016) and implementing affirming and resiliency-focused interventions may be particularly beneficial at reducing the negative effects of homonegativity among younger Black GBM (Cahill, Valadez and Ibarrola, 2012). Additionally, constructed families and Houses may also be a potential source of intervention for young Black GBM. Houses have played an important role in HIV prevention for Black GBM and research indicates House members are more knowledgeable about PrEP and more likely to have a primary care physician (Young et al., 2017). A popular-opinion leader intervention within the House community was found to be successful at reducing sexual risk behaviors and HIV stigma (Hosek et al., 2015) and a similar model of collaborating with houses or other constructed family networks may be useful at reducing intersectional stigma. Finally, public health interventions can help normalize PrEP and break the associations between PrEP and sexual deviance, which our findings suggest are acting as a strong barrier to PrEP uptake. Evidence indicates that awareness and knowledge of PrEP reduces PrEP stigma and increases positive attitudes toward PrEP (Mustanski et al., 2018).

Our findings add to the existing literature on PrEP stigma, demonstrating the interconnected nature of PrEP stigma, racism, and homonegativity experienced among young Black GBM. This study demonstrates that some of the same factors that put young Black GBM at a greater risk for HIV (intersecting stigmas, exclusion from healthcare, societal homonegativity) also pose barriers to PrEP uptake and adherence. Participants in these focus groups described significant socio-structural barriers to PrEP uptake and helped to enhance our understanding of the ways in which intersectional stigma can inhibit HIV prevention efforts. Additional research is needed to inform interventions that address intersectional stigma and change the narrative around on PrEP, reduce PrEP stigma, and ultimately reduce racial inequalities in PrEP use.

Highlights.

  • Intersectional stigma is a persistent barrier to PrEP use among young Black men

  • Decisions about PrEP use are informed by racism, homonegativity, and HIV stigma

  • Intersectional stigma contributes to othering, PrEP stigma, and HIV stigma

  • Intersectional stigma influenced decisions about identity disclosure in healthcare

  • Social and structural interventions are needed to reduce the sources of stigma

Acknowledgements

We are incredibly grateful to the young people who participated in this study and we were willing to share intimate details about their lives and healthcare experiences. This research would not have been possible without the community organizations and leaders who partner with us.

Funding: This study was funded by the National Institute of Mental Health (K01 MH112412; PI: Quinn) and supported by the National Institute of Mental Health Center Grant (P30-MH52776; PI: J. Kelly) and the DC CFAR (P30 AI117970-04).

Footnotes

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