Abstract
Pre-exposure prophylaxis (PrEP) is effective at reducing new HIV infections among adherent users. However, there are potential benefits of PrEP beyond HIV prevention that remain understudied, particularly among young Black gay, bisexual, and other men who have sex with men (MSM). In 2018, we conducted six focus groups (n=36) in four midwestern cities: Milwaukee, WI; Minneapolis, MN; Detroit, MI; and Kansas City, MO with current and former PrEP users who identified as Black MSM. The focus groups covered medical care and provider experiences, patterns of PrEP use and adherence, relationships while on PrEP, and PrEP stigma. Results revealed four unanticipated benefits of PrEP for young Black MSM: 1) improved engagement in medical care, 2) reduced sexual and HIV anxiety, 3) increased sexual comfort and freedom, and 4) positive sexual relationships with people living with HIV. Findings from this study fill a gap in our understanding of the potential benefits of PrEP beyond HIV prevention. Public health campaigns and messaging around PrEP should incorporate such benefits to reach young Black MSM who may be motivated by benefits beyond HIV prevention.
Keywords: Pre-exposure prophylaxis, young Black MSM, sexual anxiety, engagement in medical care, focus groups
Introduction
Despite progress in recent years, young Black gay, bisexual, and other men who have sex with men (MSM) continue to bear the most severe burden of HIV/AIDS in the United States (US); in 2017, an estimated 38,700 people were diagnosed with HIV in the US, and 26% of those diagnoses were among Black MSM. Furthermore, between 2010 and 2016, HIV rates among Black MSM remained stable overall, yet increased 40% among Black MSM aged 25 to 34.1 Although they have fewer sexual partners and are engaging in fewer HIV-related risk behaviors than their White counterparts,2 half of Black MSM are projected to acquire HIV in their lifetime, compared to 9% of White MSM.3
Pre-exposure prophylaxis (PrEP) is a biobehavioral intervention that has the potential to significantly curb the HIV epidemic and reduce such disparities, demonstrating high efficacy among adherent users.4,5 Beyond HIV prevention, there are other potential benefits to PrEP. Recently, researchers have started to examine the potential psychosocial benefits of PrEP, including enhanced sexual satisfaction and sexual self-esteem as well as decreased anxiety.6 The protection PrEP provides against HIV may reduce HIV-related anxiety, thereby decreasing anxiety surrounding sexual encounters and HIV acquisition and increasing sexual satisfaction and intimacy.6 Prior research with a diverse sample of MSM found that 49% of participants reported thinking about HIV most or all of the time during sex.7 Additionally, research among a primarily White sample of MSM found that after initiating PrEP, users reported a significant decrease in sexual anxiety.6 Similarly, among MSM on PrEP participating in an open-label extension trial, data indicate the potential for PrEP to reduce fear and anxiety around HIV.8,9 In addition to reducing anxiety, PrEP may also increase sexual satisfaction and contribute to feelings of being in control of one’s sexual health.6 Finally, PrEP may also facilitate increased engagement with the healthcare system. 10 PrEP clinical guidelines specify that PrEP users should have quarterly medical appointments to receive HIV and STI testing, behavioral risk assessments, and adherence counseling, which may encourage more frequent contact with medical providers for MSM using PrEP.10
Notably, existing research on the non-biomedical benefits of PrEP has largely been with samples of primarily White MSM and may not accurately reflect the experiences of young Black MSM, for whom the benefits of PrEP may differ. For example, although Black MSM engage in condomless anal sex less frequently than their white counterparts,11,12 they remain disproportionately affected by HIV and syphilis.13 Such disparities highlight the importance of continuing to examine condom use behaviors and preferences among Black MSM. Condom use has been cited as a barrier to intimacy, trust, and sexual spontaneity,14,15 and desire for closeness and intimacy are among the most significant motivators for foregoing condoms among Black MSM.16 PrEP provides significant HIV protection even in the absence of condoms, which may reduce intimacy interference and increase sexual satisfaction. Similarly, mistrust of medical institutions, health care providers, and the healthcare system is comparatively high among both Black Americans and LGBT persons,17,18 and has been cited as a potential barrier to biomedical HIV prevention interventions.19,20 Medical mistrust and previous experiences of racism and homonegativity from healthcare providers can contribute to disengagement from the healthcare system and skepticism about PrEP,21 and make it difficult for young Black MSM to follow through on PrEP treatment recommendations. Additionally, young Black MSM may face numerous social and structural barriers to regular medical care engagement, including housing instability and lack of a primary care provider. Thus, research on the benefits of PrEP with other samples may not adequately capture the experiences of young Black MSM.
The benefits of PrEP beyond HIV prevention remain understudied and research is needed to provide a more nuanced understanding of how young Black MSM view PrEP. PrEP has the potential to significantly reduce the burden of HIV among young Black MSM, and there may be additional non-biomedical benefits that improve their social and emotional well-being. This qualitative study fills this gap and examines the perceived benefits of PrEP among 18–30-year-old Black MSM in the midwestern United States.
Methods
In 2018, we conducted six focus groups in four mid-size midwestern cities: Milwaukee, WI; Minneapolis, MN; Detroit, MI; and Kansas City, MO. Eligibility criteria included being 18–30 years old; a Black or African American male; gay, bisexual, or otherwise having sex with other men; and a current or former PrEP user. A purposive sample was recruited through collaborations with community organizations in the four study cities. Local community organizations and clinics, including PrEP and primary healthcare clinics, HIV/STI testing centers, LGBT community centers, and other local hangout locations (coffee shops, libraries, etc.) posted flyers and disseminated information about the study. Additionally, we used targeted ads on Facebook to reach individuals who may not be currently engaged in healthcare or feel safe or comfortable in LGBT-specific venues. Recruitment materials advertised focus groups aimed at understanding experiences with PrEP among Black MSM. Interested participants were screened by phone and scheduled for a group. Participants completed a brief demographic form and the informed consent process prior to the start of the group. The demographic form captured data on participant age, race, education, employment, number of sexual partners in the previous 12 months, history of PrEP use, and whether they had ever exchanged sex for drugs, money, or a place to stay. To minimize participant burden, we received a waiver of written consent. Groups were held in community settings and lasted 90 minutes. Upon completion of the group, participants received $50 for their time. The research protocol was approved by the Institutional review Board at the Medical College of Wisconsin.
Focus group content
A semi-structured focus group guide was used to ensure consistency in discussion topics while providing opportunities for probing and follow-up questions as needed. The focus group guide was used to explore various facilitating factors and barriers to continued PrEP use and PrEP adherence among young Black MSM. The main content foci of the guide were: 1) Medical care and provider experiences, 2) Patterns of PrEP use and adherence, 3) Barriers to PrEP use and adherence, 4) PrEP breaks, 5) Relationships while on PrEP, and 6) PrEP disclosure and stigma. There were several structured questions in each section, along with numerous optional prompts. Additionally, the facilitator had the flexibility to follow the conversational pattern and flow of the group and ask clarifying questions as needed.
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.22 We began by coding all transcripts with the focus group characteristics (e.g. study city). Then, a team of four independent coders used open coding to code a randomly selected transcript line-by-line, generating an initial codebook.23 We next applied the initial codebook to another selected focus group, refined codes and code definitions, and discussed discrepancies in code application. We continued this cycle of coding and team discussions until we reached inter-rater reliability of over 80% and had a finalized codebook. Two members of the team then applied the codebook to all six focus group transcripts. All transcripts were coded twice to ensure accuracy of code application. 23 Our final codebook included 36 parent codes and 52 subcodes. Examples of parent codes relevant to these analyses include motivations for initiating PrEP, PrEP benefits, PrEP drawbacks, perceptions of PrEP users, medical care, and PrEP adherence. Coded focus groups were analyzed using thematic content analysis24 to identify study themes. Analyses were guided by our research question, which sought to provide a more nuanced understanding of the potential benefits of PrEP for young Black MSM. We took an inductive approach to analysis, in which the themes identified were grounded in the data, rather than an a priori theoretical construct.24 The research team read through coded transcripts to analyze content and patterns in the data, seeking to identify and relationships among codes and themes. This was an iterative process that included reading the entire data set, analyzing the coded segments, considering relationships among codes and writing about identified themes.24
Results
We conducted six focus groups with 36 young Black MSM who were current or former PrEP users in Milwaukee (n = 18), Minneapolis (n = 7), Detroit (n = 6), and Kansas City (n = 5). Sample characteristics are presented in Table 1. Participants were between the ages of 20 and 30, with a mean age of 26. The vast majority of participant identified as gay (n = 25; 69%). Twenty-seven participants (75%) were current PrEP users. The remaining nine (25%) were former PrEP users. Current and former PrEP users were in the same groups; each group included at least one former PrEP user.
Table 1:
Sample Characteristics
Sample Characteristics | Detroit, n (%) | Kansas City, n (%) | Milwaukee, n (%) | Minneapolis, n (%) | TOTAL, n (%)* |
---|---|---|---|---|---|
Total participants | 6 (17%) | 5 (14%) | 18 (50%) | 7 (19%) | 36 |
Age (mean, SD, range) | 28.7 (0.5) Range: 28–29 |
27.4 (2.9) Range: 23–30 |
24.9 (3.8) Range: 20–30 |
25 (4.1) Range: 20–29 |
25.9 (3.6) Range: 20–30 |
Age range | 28–29 | 23–30 | 20–30 | 20–29 | 20–30 |
Sexual Identity | |||||
Gay | 3 (50%) | 5 (100%) | 12 (67%) | 5 (71%) | 25 (69%) |
Bisexual | 1 (17%) | 0 | 3 (17%) | 1 (14%) | 5 (14%) |
Other | 2 (33%) | 0 | 3 (17%) | 1 (14%) | 6 (17%) |
Relationship Status | |||||
Single; casual sex partners | 3 (50%) | 1 (20%) | 14 (78%) | 3 (43%) | 21 (58%) |
Dating 1 person | 0 | 1 (20%) | 1 (6%) | 1 (14%) | 3 (8%) |
Dating multiple | 0 | 3 (60%) | 0 | 0 | 3 (8%) |
Committed or living together | 3 (50%) | 0 | 3 (17%) | 3 (43%) | 9 (25%) |
Partners in last 12 months | |||||
1–4 partners | 2 (33%) | 2 (40%) | 8 (44%) | 3 (43%) | 15 (42%) |
5–9 partners | 1 (17%) | 0 | 4 (22%) | 1 (14%) | 6 (17%) |
10–15 partners | 2 (33%) | 1 (20%) | 2 (11%) | 1 (14%) | 6 (17%) |
>15 | 0 | 1 (20%) | 3 (17%) | 2 (29%) | 6 (17%) |
No answer/ Don’t know | 1 (17%) | 1 (20%) | 1 (6%) | 0 | 3 (8%) |
PrEP Use | |||||
Currently taking PrEP | 5 (83%) | 4 (80%) | 12 (67%) | 6 (86%) | 27 (75%) |
Formerly used PrEP | 1 (17%) | 1 (20%) | 6 (33%) | 1 (14%) | 9 (25%) |
Employment | |||||
Full Time | 5 (83%) | 4 (80%) | 10 (56%) | 4 (57%) | 23 (64%) |
Regular part-time | 0 | 1 (20%) | 3 (17%) | 1 (14%) | 5 (14%) |
Unemployed | 0 | 0 | 5 (28%) | 2 (29%) | 7 (19%) |
No answer | 1 (17%) | 0 | 0 | 0 | 1 (3%) |
Education | |||||
High School | 1 (17%) | 0 | 5 (28%) | 2 (29%) | 8 (22%) |
Some College | 2 (33%) | 0 | 7 (38%) | 2 (29%) | 11 (31%) |
College | 2 (33%) | 5 (100) | 6 (33%) | 3 (43%) | 16 (44%) |
No answer | 1 (17%) | 0 | 0 | 0 | 1 (3%) |
Income | |||||
<$10,000 | 1 (17%) | 0 | 4 (22%) | 2 (29%) | 7 (19%) |
$10–20,000 | 0 | 0 | 4 (22%) | 1 (14%) | 5 (14%) |
$20–40,000 | 3 (50%) | 1 (20%) | 7 (39%) | 4 (57%) | 15 (42%) |
>$40,000 | 1 (17%) | 4 (80%) | 2 (11) | 0 | 7 (19%) |
No answer | 1 (17%) | 0 | 1 (6%) | 0 | 2 (6%) |
Ever exchanged sex | 0 | 1 (20%) | 5 (28%) | 1 (14%) | 7 (19%) |
Totals may not equal 100 due to rounding or non-response by some participants
The aim of this study was to understand the non-biomedical benefits of PrEP experienced by young Black MSM, which may be important in helping to frame and target PrEP uptake and maintenance initiatives. However, participants’ experiences were diverse, and many had cycled on and off PrEP, had conflicting views on PrEP over time, and highlighted numerous barriers to PrEP initiation and maintenance. Thus, the benefits presented here are just part of these young men’s experiences and should not be interpreted as though these individuals have only had positive perceptions of PrEP. Rather, our aim is to shed light on the potential benefits of PrEP, beyond HIV prevention, that are experienced by young Black MSM.
Although HIV prevention was the primary motivator for initiating and maintaining PrEP, conversations with current and former PrEP users shed light on several additional benefits. Our results are organized around four primary themes that demonstrate these benefits: 1) improved engagement in medical care, 2) reduced sexual and HIV anxiety, 3) increased sexual comfort and freedom, and 4) more positive sexual relationships with people living with HIV. Quotes are used to demonstrate these themes.
Improved engagement in medical care
PrEP, as a pharmacological intervention, necessitates regular medical care. In addition to needing to obtain a prescription for PrEP from a medical provider, clinical PrEP guidelines recommend quarterly medical visits and bloodwork, including HIV and STI testing.10 Although these medical care requirements can serve as a barrier to PrEP initiation and adherence,21 our results demonstrate how many young Black MSM also saw this enhanced engagement in care as a benefit of PrEP. For example, in a Minneapolis focus group, participants discussed how PrEP facilitated stronger engagement with the healthcare system and improved their relationships with providers.
Participant 8 (P8): It made me appreciate my healthcare, before that I wasn’t taking any pills for anything.
P7: I definitely think it’s a lot more controlled because when you’re taking PrEP, I think your doctor requests that you take a test every three to six months, so it kind of prompts you to, “Hey, I need to get my test taken.” And you’re in the know of your status; I mean, you don’t have to question. You don’t even to question, you don’t have to be like, “I need to make an appointment” or anything like that. You just know I’m going to take my test.
P4: For me it’s been like yeah, if you even think something’s wrong, just talk to the doctor, worst case I mean you know rather than, “I hope nothing’s wrong.”
Facilitator (F): Ok. So, it sounds like PrEP’s giving you that more “I’m quick to go to the doctor now because I don’t have to worry so much because I’m on PrEP and I’m regularly seeing my doctor at this point for a few months.”
P2: Right, at that point you build a relationship. You’re probably more open, you’re more willing to be open with your provider at that point because you know them by name. “How you been? How’s your partner been?” [Minneapolis]
In addition to facilitating healthcare engagement, regular healthcare visits allowed participants to build relationships with providers, which facilitated trust and allowed young Black MSM “to be more open” with their providers. Greater engagement with the healthcare system also facilitated more regular HIV and STI testing. Like participant seven (P7) noted above, regular PrEP follow-up visits routinized HIV testing. A participant in a Milwaukee focus group similarly described how, rather than waiting for “a scare” to encourage him to get an HIV or STI test, he now went quarterly:
F: What other benefits do you hear out there, or what other benefits do you know of?
P1: For me it was like going to the doctor every three months, going to get that check-up, you know. ‘Cuz a lotta times you don’t go get tested until you have a scare. But like, being on PrEP, it’s like okay, I gotta go get to my check-up, you know? (laughing) Like I’m going to see the people.
(group agreement)
P1: And when you got there you had like, you got like a whole full screening. It wasn’t just a syphilis test. You got everything. And so that changed. For me it changed my conversation around sex, too, ‘cuz we’d be like oh, y’all got my papers, and I just got that HIV and that gonorrhea, and I had that full palette, like I got that paperwork, which I probably would not have received had I not been on PrEP. [Milwaukee]
The CDC’s PrEP clinical practice guidelines, which recommend regular HIV and STI testing for PrEP users,10 helped facilitate more frequent testing for a population of young MSM who noted previously waiting to get tested until they had high-risk encounters or were worried they had already been exposed to HIV or another STI. Additionally, as this participant explained, his regular HIV and STI tests also changed his conversations around sex with potential partners, with whom he could openly and confidently discuss his sexual health.
The increased engagement in medical care also allowed participants to receive treatment for other health issues they might have previously neglected.
P2: [PrEP] made me more aware of how to keep myself healthy because most doctors that’s doctors-primary care physicians, PrEP advocates, whatever you want to call them, they always worrying about other things in your health, so you go in about that. But like with me, I admit I have vital and blood pressure issues forever. So, she’ll go from my stuff and then the main thing she’ll be going is my blood pressure. Like she already know, I’m good when it comes to that, so she kind of just leave that alone and she be on me more about other health issues, which I appreciate. Because my main focus of coming here is making sure I don’t contract HIV. But she makes sure I realize other things I need to take care of myself, ‘cuz if my blood pressure too high, I’m still not going to live regardless if I’m on PrEP or not.
F: Gotch you. So it just made you more generally aware of your own health period.
P2: Since I started, that’s the most I’ve been to my medical provider, so like every 3 to 6 months I’m going to check him out. Like he said, it’s a full-scale thing. It’s not just about the PrEP and what it’s doing. It’s everything; they check your vitals and they do all that work. [Milwaukee]
As this conversation illustrates, not only can PrEP facilitate stronger patient-provider relationship, but it can also facilitate care and treatment of non-HIV related medical concerns. As participant two (P2) explained, although his primary reason for engaging in care was HIV prevention, his doctor was concerned with his blood pressure and made sure that was being treated as well. This participant also touched on another important benefit of PrEP. For many participants, the required regular medical visits they have had for PrEP is the most they’ve ever engaged with the healthcare system. Thus, PrEP facilitates stronger engagement with the healthcare system overall, improves relationships with providers, and allows for the treatment of other medical conditions that may not have happened if it were not for PrEP. Another participant in Detroit focus group made a similar observation:
P1: If anything, I feel like it brings me to the doctor more regularly. So, because of that, I kinda check up on other things. Like I get more physicals just to see what’s going on. I’m more mindful of like my blood results and things like that. I do have them test for more than STDs and HIV and things like that, just medical disorders, things like that. I would say that would be one thing for me.
F: Yeah. So, it’s like a sense of empowerment about your health then, too?
P1: Yeah, exactly! In a sense it’s kinda sort of helping me take control and kinda know what’s going on with my body.
P3: Very true. [Detroit]
This increased engagement in the healthcare system improved participants’ sense of control over their health and made several participants more mindful about their health in general.
Reduced sexual and HIV anxiety
In addition to increasing engagement in care, PrEP use also significantly reduced anxiety associated with HIV risk. Participants expressed anxieties about having sex, getting HIV tests, and how their lives might change if they were to contract HIV. For many participants, PrEP alleviated many of these anxieties:
F: What are the things that you like about PrEP, being on PrEP?
P1: Well, being Black, we have enough shit to deal with already. Let’s not add HIV to the mix, so I decided one, for extra protection.
F: When you said, “because I’m Black, I already have a lot of shit to deal with.” Can you talk about what you mean by that?
P1: Well, accessing health care for Black individuals is very limited already. Education with Black individuals, especially as men, is pretty limited. And so, I don’t want my physical health to bar me from reaching my goals of school, personally, in my community, so a little form of protection every single day, I’ll take that any day of the week. [Minneapolis]
PrEP afforded men an opportunity to protect themselves from at least one of the many social disparities affecting Black men. Although HIV was a significant concern for many participants, it was merely one of many social and health concerns they were facing. As described above, PrEP was seen as a simple solution that at least provided protection against HIV.
PrEP also reduced anxiety surrounding sex. While condom use prior to initiating PrEP varied across study participants, individuals consistently described anxiety associated with having sex, even when condoms were used. In Detroit, participants discussed how PrEP reduced such anxieties:
F: What did you like about being on PrEP when you first started?
P2: I liked the fact that I didn’t feel like I was gonna die every time I had sex. Like that is a huge thing for me. I’m serious. You get a feel like, is this the one? Oh God, checking the condom. Did it break? I mean, I don’t have to worry, and I know everything else pretty much treatable. So, I feel way more comfortable and did a whole lot, but I was safe though.
F: Yeah, and it’s a reality what you’re saying. It’s a reality being that worry, the stress. It’s like, “I don’t have to worry about it. Even if I did a little slip, I don’t have to worry about it because I know what’s going on.”
P3: Yeah, I know the big thing is taken care of, you know, and I’m like, when are they gonna get that other pill that does everything else? But the big thing, it was literally like okay, you good. You good. [Detroit]
As participant two (P2) described, even when he had sex with a condom, he experienced significant anxiety. Although participants acknowledged risk for other, ”treatable” STIs, the freedom associated with being able to have sex, with or without condoms, and have protection from HIV significantly reduced sexual anxiety. In several groups, participants described HIV anxiety as fears about dying or contracting a “life-threatening disease.” This may be due to the lack of a cure for HIV, as well as prevailing stereotypes and misconceptions about the health or life course of people living with HIV. However, such perceptions fueled anxiety that PrEP was able to quell. This was evident in Minneapolis, where one participant described his previous anxieties associated with HIV testing.
P5: When you go get tested, you think about everything. You think about kissing somebody, maybe they had a cut in their mouth; you had oral sex whichever way or whatever you do. Everything, you think about everything. And so when you take that PrEP pill, it made me feel comfortable, like, “I can do this and I won’t be dying.” Or, “I won’t have a life-threatening disease,” or whatever you want to call it.
F: I hear what you’re saying.
P5: Like he said earlier, you don’t really want to say that but, it’s like the truth though. Everything else is cured, most of everything is curable. I mean, as long as you’re being smart practicing whatever but yeah, that’s how you think. [Focus group four, Minneapolis]
Other participants similarly described the anxiety they experienced with each HIV test. With PrEP, not only were individuals more confident that their HIV results would be negative, as was evident earlier, they also received more regular HIV testing as part of their PrEP follow-up appointments. Although other STIs remained a risk of condomless sex, they were seen as “curable.”
Reduced anxiety contributed to increased sexual freedom
For many participants, the reduction in anxiety due to PrEP use was associated with greater sexual freedom and exploration. Significantly reducing the risk for HIV provided men with opportunities to take sexual risks they may not have taken without PrEP. One individual in Detroit described how reduced sexual anxiety associated with PrEP and regular HIV testing contributed to greater sexual freedom:
P1: Well me, knowing that I have to get tested every three months and not only three months, I could do it every month. But to maintain my PrEP, I like that safeguard there. Does it give me less anxiety to have sex? That’s a definite yes. With that less anxiety and heighten awareness, do I feel like I expose myself more? I would have to say yes, because the blocking of my anxiety and willingness to do things is set forth to prevent it happening with this tool. I can now explore with that safety net and I don’t have to worry. [Detroit]
For many participants, PrEP reduced the anxiety around sex such that men expressed a greater willingness to safely “explore” without worrying about HIV. Although such experiences are often characterized in a negative light, for many participants, PrEP provided a “safety net” that allowed them to explore their sexuality without the associated anxiety. This conversation in Detroit continued:
P1: I still have a risk, but the risk is lessened so the anxiety is lessened, so I still would use it. So yeah, that’s how I look at it.
F: Gotcha. What about with you guys?
P3: I feel like none of my sexual behaviors or mannerisms have changed since I started PrEP. I still occasionally go on a ho-cation [a period of promiscuity]. I still don’t like using condoms. PrEP is simply just an extra like an extra preventive method that I take. It hasn’t necessarily made me any more or less risky. I am thinking about bottoming more now, I feel more comfortable. I’m thinking about it, I haven’t done it. [Detroit]
PrEP also facilitated the freedom to consider sexual positions or behaviors that participants had previously deemed too risky. Like many participants in the study, participant three (P3) did not like using condoms and frequently had condomless anal intercourse prior to initiating PrEP. As noted earlier, PrEP did not often contribute to more condomless sex, but rather was used as protection against HIV among men already having condomless sex. Participant three noted his consideration of “bottoming” now that he was on PrEP. Strategic sexual positioning, or seropositioning, is an HIV risk reduction practice whereby HIV-negative individuals engage in certain sexual positions that reduce risk for HIV transmission, including insertive anal intercourse.25 PrEP reduced this participant’s anxiety such that he was now able to consider new sexual behaviors. Another participant similarly described his increased comfort with being a receptive anal intercourse partner now that he was on PrEP:
P4: Those instances to where I did choose the bottom, like I was always in a constant state of panic or fear even though I know all my HIV information: “I’m not sure if he left that condom on” type of thing. So now I’m like getting tested every two weeks and all this kind of stuff, so it really helped put my mind at ease, starting to take PrEP as a medication. [Detroit]
Importantly, PrEP provided individuals control over their sexual health, particularly as receptive partners. Receptive anal intercourse partners are at greater risk for HIV transmission and, as this participant explained, they can experience increased anxiety about HIV risk and whether their partner is using a condom. PrEP provided individuals control over their sexual protection, regardless of positioning or whether their partner was using a condom, which was particularly important in reducing anxiety for receptive partners.
In addition to those who worried about their partners’ condom use, PrEP also provided an increased sense of sexual freedom for individuals who used condoms inconsistently. For example, in focus group four, participants discussed their dislike of condoms. One participant, who described himself as a “top,” or insertive anal intercourse partner, recalled the sexual freedom that accompanied his PrEP initiation:
P2: I thought from the beginning that it was like my get out of jail free card. I can do whatever I want. And as I started taking it, I don’t have the energy to do that. I will say that, I don’t know if I’m jumping ahead of the conversation here-
F: No, go ahead.
P2: I personally don’t like wearing condoms. And that’s just because I’m usually the top and I don’t like the way condoms feel. So that was a big reason I got on PrEP in the first place, because I found condoms to be very frustrating experience and so I feel much more sexier when I don’t have to wear a condom when I’m topping. So that’s like my reason for taking PrEP. [Minneapolis]
Although he did note that he initially viewed PrEP as his “get out of jail free card,” allowing him to have condomless sex, he also described his dislike of condoms and having condomless sex prior to starting PrEP. Thus, PrEP was an opportunity for him to have safe condomless sex, which he preferred and made him feel “sexier.” Sexual pleasure is typically left out of conversations around PrEP, but it does seem to be an important benefit of PrEP for many young Black MSM.
PrEP also provided men control and autonomy over their sexual health in a way not afforded by condoms. Regardless of relationship status, power imbalances, or ability and comfort negotiating condoms, PrEP allowed individuals to protect themselves against HIV at an individual-rather than partner-level. As someone noted in focus group two: “It doesn’t give the other person responsibility. Like, they don’t have to protect me, because I’m already protecting myself.” This ability to self-protect was particularly important when individuals did not have accurate information about their partners’ HIV status or testing habits. This was revealed in a Kansas City group:
F: What are some of the things that you like about being on PrEP?
P5: Control.
F: Control. What do you mean when you say control?
P1: You don’t have to trust people at their word generally, and that was the impetus for my scare situation, was relying on trust, and that was stupid.
P4: But it’s the truth! I mean-
P3: It’s the truth, yeah! It gives you the autonomy to really make decisions for yourself. So, like whatever fits you sexually. And like then I can turn the conversations to HIV a little bit more confidently, irrespective of what they will or will not share with me. [Kansas City]
Participant one (P1) described how, in a previous sexual encounter, his partner did not disclose his HIV status, resulting in an HIV “scare.” PrEP provided him additional protection, regardless of whether his partners disclosed their status or viral load. The men in Minneapolis had a similar conversation about the personal responsibility provided by using PrEP:
P4: Just a phobia about catching HIV really. You can be in a monogamous relationship, doesn’t mean your partner’s going to be monogamous. I mean you always have to protect yourself … You got to put the responsibility in your hands.
P5: I mean just being a Black gay man. I mean like our population probably has the highest amount of HIV, so they say anyways. Statistically speaking, again just make sure you protect yourself if anything. [Minneapolis]
Participants often acknowledged that HIV risk was still present in monogamous relationships, and while they could not control their partners’ behaviors, they could continue to protect themselves from HIV. In several groups, participants also cited HIV disparities and statistics among Black men, noting the importance of always being cautious, regardless of relationship status.
PrEP facilitated positive sexual relationships with people living with HIV
As noted above, PrEP provided men with opportunities to have sexual relationships without the anxiety of HIV, including with people living with HIV (PLH). Our results demonstrated the potential for PrEP to facilitate positive sexual relationships among serodiscordant couples by reducing HIV stigma and the anxiety around HIV transmission. Many participants described how PrEP made them more comfortable having sexual relationships with PLH, even if they had been open to serodiscordant relationships in the past:
P4: I started taking PrEP because I dated men who were positive in the past, and so just like he said, another layer of protection. And just arming myself with like the knowledge and doing the independent research and, you know, not stigmatize anybody just because of that, yeah. [Kansas City]
Although this individual had dated men living with HIV in the past, PrEP provided him with additional protection and allowed him to have safe, non-stigmatizing relationships with PLH. Other participants, however, noted that prior to initiating PrEP, they would not have sex with PLH. Although many still expressed some anxiety around serodiscordant relationships, they noted an increased willingness to consider such relationships.
P3: I had a long list of things I was not gonna do. And one of the things at the top of the list was to have sex with someone else HIV-positive. That I knew was HIV-positive, to be clear. But I don’t know what the fuck people is. Everybody’s positive until proven guilty. And this is my mindset around it. And then I met someone I really liked, and they were positive, and I had my first scare. And I was like hell no. Never again… but now that I’m on PrEP, it’s now like U=U. Now that’s the formula, like the end all, be all.
P2: I don’t think it would be an issue. Just for me, the important part is communication and conversation. So, I know there’s still stigma around [HIV]. But me as an individual, I would wanna know upfront and we can make sure we can take those measures to protect ourselves.
P3: Nowadays people will tell you they’re undetectable right off the bat. That’s almost the thing they say after “yes, I’m positive” is “I’m poz, undetectable” or something like that. Which again is kinda like that guilty until proved negative thing. You don’t know if they’re really [undetectable].
P1: It’s the same with me. I guess I wouldn’t have a problem dating someone, but I would have to know … . the faith in a person when you’re in a sexual situation is not the best policy versus hard knowledge. So instead of a casual situation, I will treat everyone like you said, positive until proven negative. I wouldn’t have a problem with long-term relationship with someone who’s positive, especially if I care for them. [Detroit]
The conversation among these three participants illustrates how, although they remain cautious, especially with casual partners who may not be honest about their status or viral load, PrEP has allowed them to be more comfortable having sex with PLH. Participants also described the importance of U=U (undetectable equals untransmittable); U=U refers to recent evidence that PLH with undetectable viral loads cannot transmit HIV to their partners.26–28 The combination of PrEP and U=U helped increase participants’ confidence that they could safely have sex with PLH without putting themselves at risk for HIV, reducing the stigma associated with PLH and having partners who were living with HIV.
In addition to allowing participants to feel more comfortable having relationships with PLH, many also viewed their PrEP use as a demonstration of love and respect for their partners with HIV.
P2: I think that [taking PrEP] shows, for me anyway, having dated several men who were positive. Like, I think it shows that you’re not only talking the talk, you’re like walking the walk. Because I actually got on it because I was dating someone actively [who was living with HIV]. And so it’s like I’m doing this to protect myself, but I’m doing this as kind of a general gesture of how much I care about you. Like that I care enough about you to take these steps, you know, so. [Focus group three, Kansas City]
The primary motivation to use PrEP was protection from HIV for themselves, yet when discussing their experiences on PrEP and sex with PLH, participants regarded PrEP as a gesture of love and care for their partners. This was also true for young Black MSM who had friends living with HIV.
P3: Me getting on PrEP was more so about the fact that I have tons of friends that are HIV-positive. And it’s like a slap in the face knowing what they go through, taking them to the hospital every time they sneeze. They’re like, “Oh my gosh! Is this it?” It felt like it would be a slap in the face for me to know their struggle and then to turn around and get it myself… It was more so that it was like I’m gonna walk around and just look at them and just like this is their do-over. Kinda felt like I’m kinda giving them their do-over and they feel like, “Hey, I’m going through something, but my friends are looking at it and making better decisions.” A lot of my friends were like, “I’m so glad you did that.” They were like, “You just don’t want this. It ain’t what you want.” [Focus group five, Detroit]
Participants recognized the difficulty faced by PLH, and their friends’ experiences motivated them to protect themselves and “make better decisions.”
Discussion
This study demonstrates the importance of considering the benefits of PrEP beyond HIV prevention for young Black GBM. Rates of PrEP use among young Black GBM remain low; of the 1.1 million persons estimated to benefit from PrEP, 45% are Black.29 Yet, in 2016, nearly six times as many white individuals were prescribed PrEP as were Black individuals.30 Although not presented in our results, study participants described numerous challenges to accessing and adhering to PrEP including PrEP stigma, challenges using PrEP in primary partnerships, challenges with health insurance, and various social and structural challenges such as housing instability and transportation barriers. Yet, our aim here was to acknowledge and highlight the benefits of PrEP beyond HIV prevention, which may help facilitate PrEP uptake and reduce PrEP disparities faced by young Black GBM.
Although HIV prevention was the primary motivation for using PrEP, study participants described several other non-biomedical benefits of PrEP that may be just as important within the larger context of the HIV epidemic. Several study participants described increased and improved engagement with the healthcare system after initiating PrEP. Prior research has shown that young Black MSM face racism and homonegativity in health care settings21,31 and are less likely to disclose their sexual behaviors to providers, which can limit HIV testing and prevention conversations and serve as barriers to PrEP.32 These factors will likely remain significant barriers to initiating PrEP and important drivers of racial disparities in PrEP uptake. However, our results demonstrate that for some individuals, engagement in PrEP care can also facilitate increased engagement and trust in healthcare among young Black MSM. Participants described feelings of control over one’s health, increased engagement in preventative healthcare, and the establishment of trusting relationships with providers. Regular healthcare visits, as required in PrEP care, provided an opportunity for Black MSM, historically excluded from the healthcare system,33 to build long-term, trusting relationships with providers. Interventions are needed to enhance training of physicians and health care professionals around providing culturally competent care and systems of PrEP care. For example, providing PrEP outside of traditional clinic and formal healthcare settings may increase the trust and comfort of young Black GBM and facilitate PrEP access. Community-based, youth-centered social service organizations and community spaces that integrate health services may help facilitate engagement in healthcare and PrEP uptake and maintenance among young Black MSM. Our results also suggest that framing PrEP as part of an individual’s overall health and an opportunity to take control over one’s sexual health, rather than simply an HIV prevention intervention, may increase interest in PrEP and reduce PrEP stigma. Additionally, physician- and clinic-level interventions that seek to improve care for young Black MSM and reduce implicit racial, sexual, and gender identity bias may facilitate increased comfort with healthcare and HIV prevention services. Establishing trusting patient-provider relationships can increase overall engagement in healthcare, provide opportunities for care beyond sexual health, and increase young men’s comfort accessing healthcare.
PrEP use was also beneficial in reducing sexual and HIV anxiety and increasing sexual freedom. As our data show, PrEP can enhance sexual pleasure by reducing individuals’ anxiety during sex, making some individuals feel “sexier,” and allowing for greater versatility in sexual positioning and partner selection. Although there was some evidence of decreased condom use after initiating PrEP, most commonly, individuals used PrEP because they were already having condomless anal intercourse. While concerns about risk compensation frequently focus on increased risk for STIs, our findings highlight the potential benefits available to PrEP users who dislike or otherwise choose not to use condoms. In part attributable to reduced anxiety around HIV, participants noted being able to continue having condomless intercourse without the stress and anxiety they previously experienced. Although they were still at risk for STIs, participants regularly noted STIs were “curable,” and they were primarily concerned with their protection from HIV. Thus, some young Black MSM appear to be making risk calculations where STIs are considered an acceptable risk for avoiding the inconvenience, discomfort, and intimacy inhibition of condoms.
Although condomless sex may lead to an increase in sexual satisfaction or intimacy, it does increase risk for STIs, which remain an important aspect of the discussion surrounding PrEP. Research on STIs among PrEP users remains mixed. Although there is evidence of increased condomless receptive anal intercourse upon initiating PrEP34 and elevated STI rates among Black MSM PrEP users,35 recent research found that while rates of STIs are higher among younger Black MSM, STI incidence is not associated with PrEP acceptance or adherence.36 The presence of an STI is one of the strongest predictors of subsequent HIV seroconversion,37 and thus, STIs among PrEP users must remain an important area of HIV prevention research. However, there is some evidence that provider concerns about risk compensation may contribute to a reluctance to prescribe PrEP to Black MSM,38 which may only serve to delay progress in reducing HIV infections and racial disparities in HIV.39 Individuals who do not use condoms consistently, including the majority of participants in this study, may benefit the most from PrEP.
Finally, our results demonstrate the potential of PrEP and other treatment as prevention (TasP) strategies to support serodiscordant relationships and reduce HIV stigma. HIV serosorting, or identifying potential sexual partners based on HIV status to reduce HIV risk, has played a major role in partner selection norms among MSM.40,41 Yet, such practices can also contribute to HIV stigma and negative consequences associated with disclosure of HIV status.42 The exclusion of PLH as sexual and romantic partners has contributed to negative psychological outcomes for PLH, including internalized stigma, poor self-image, and fear of rejection.43,44 Furthermore, HIV stigma contributes to poor HIV outcomes, including decreased access to and engagement in HIV care45–47 and increased risk behavior, low medication adherence, and decreased viral suppression.48–50 Yet, our findings suggest TasP and other biobehaviral strategies, including U=U and PrEP, may have the potential to reduce HIV stigma and subsequently improve health outcomes among PLH. In this study, PrEP use contributed to decreased HIV anxiety, which led some individuals to consider relationships with PLH that they had previously deemed too risky. TasP in virally suppressed partners should similarly reduce anxiety and stigma around having sex with PLH, yet participants in this study preferred the additional protection offered by PrEP that was also within their control. Despite efforts to enhance awareness of U=U and reduce HIV stigma28, TasP did not seem to be a prevention method most participants were knowledgeable about and comfortable with. Greater research is needed to understand young Black MSM’s perceptions of TasP and examine potential risks and trends in serosorting among PrEP users. Although reduction in serosorting may reduce HIV stigma for PLH, there are concerns that reduced serosorting combined with sub-optimal PrEP adherence, which is common among young Black MSM,51,52 may increase HIV transmission.8 A recent study of PrEP adherence among a diverse sample of young MSM found significantly lower levels of adherence among Black MSM as compared to other racial and ethnic groups.51 These findings raise concerns about the potential for non-adherent or intermittent PrEP users to achieve protective drug levels to prevent HIV. Additional research is needed to understand the effect of TasP on serosorting behaviors, HIV stigma, and HIV transmission, particularly among young Black MSM.
Our data have implications for public health campaigns and initiatives that aim to enhance PrEP uptake among young Black MSM. Most notably, there is a need to emphasize the benefits of PrEP beyond HIV prevention, including reduced anxiety and increased intimacy. In this study, current and former young Black MSM PrEP users identified several non-biomedical benefits of PrEP, which may be useful in sharing with other young Black MSM who are resistant or hesitant to use PrEP. For example, PrEP campaigns that emphasize pleasure and intimacy in PrEP-protected sex may make PrEP more appealing to individuals who experience or perceive greater HIV stigma. Stigmatizing environments can reduce motivations to use condoms53 and may similarly reduce motivations to seek out PrEP.21 Thus, framing PrEP only around HIV-prevention may limit its impact and uptake among some young Black MSM. Efforts to enhance PrEP uptake may also benefit from highlighting the pleasure and intimacy afforded by PrEP by providing opportunities for safe, condomless sex. In Chicago, the PrEP4Love campaign highlights benefits of PrEP including “feeling sexier and in control,” in addition to protection against HIV.54 Other research has also found that PrEP may be considered more appealing to MSM in partnerships when framed as a couple’s activity,55 which can reduce PrEP stigma and help overcome assumptions about infidelity frequently associated with PrEP.56 Finally, as noted earlier, young Black MSM may experience numerous barriers to accessing culturally relevant, accessible, and affordable sexual healthcare, which can limit PrEP uptake among this population.18,21,57 Framing PrEP as an empowering act of resistance against stigmatizing and oppressive social systems that enhance their risk for HIV may help empower young men see PrEP as an opportunity to respond to such forces.58 Empowering and affirming messaging around PrEP may be more relevant and relatable to younger Black MSM, for whom PrEP use continues to lag.30
There are limitations of this study. Our data are useful in helping understand the benefits of PrEP for young Black MSM. However, additional research is needed to understand how these benefits facilitate PrEP uptake and adherence. For example, it is unclear if these benefits were felt stronger by individuals who maintain PrEP use for longer periods of time or if such benefits of PrEP were motivations to initiate PrEP or identified after using PrEP. We conducted six focus groups in four mid-size midwestern cities. Two groups were conducted in both Milwaukee and Detroit, and one group each was held in Minneapolis and Kansas City. We faced challenges recruiting young Black MSM current and former PrEP users in several cities, which resulted in unequal participation among the cities; Milwaukee (n = 18), Minneapolis (n = 7), Detroit (n = 6), and Kansas City (n = 5). Nevertheless, our analyses did not reveal any differences in experiences or perspectives across participants in these cities, and our data highlight the collective benefits of PrEP for young Black MSM in mid-size midwestern cities. Additionally, study participants were primarily recruited through local LGBT community organizations and PrEP and HIV clinics which may bias the sample. We made additional efforts to recruit individuals not engaged in medical care or affiliated with the LGBT community through general community venues (e.g. libraries and coffee shops) and using targeted Facebook ads. Our study findings are limited to primarily gay and bisexual-identifying Black MSM and additional research is needed to understand how PrEP is perceived among other samples of men. Finally, our data may be subject to social desirability bias, as participants may have provided responses based on how they perceived others in the group would respond. For example, individuals may have reported a willingness to have sex with PLH because others in the group expressed such views or otherwise expressed views they believed would be more socially acceptable.
Taken together, our results fill a gap in our understanding of the potential benefits of PrEP beyond biomedical HIV prevention among young Black MSM in the US. PrEP use may increase engagement and trust in healthcare, reduce sexual and HIV anxiety, increase sexual freedom, and reduce HIV stigma. Public health campaigns and messaging around PrEP should incorporate such benefits, including sexual pleasure and intimacy, to reach young Black MSM who may be motivated by such benefits in addition to HIV prevention. Future research is needed to examine these benefits quantitatively, in larger samples of young Black MSM. Conversations around PrEP should extend beyond HIV prevention, as these additional benefits may be motivating factors to increase PrEP initiation and adherence among young Black MSM.
Acknowledgements
Funding support was provided by the National Institute of Mental Health (K01-MH112412; PI: Quinn; R01-MH115764; PI: Walsh; P30-MH052776, PI: Jeffrey A. Kelly;). The Authors would like to acknowledge the support and collaboration of our community partner agencies in Milwaukee, Minneapolis, Kansas City, and Detroit. Special Thanks to all of the staff at the Center for AIDS Intervention Research (CAIR) who were instrumental in this research. We are grateful for the 80 young men who participated in this research and so graciously and honestly shared their stories with us. Their participation in HIV prevention research is essential to moving the field forward.
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