Reasons Why Young Men Who Have Sex with Men Report Not Using HIV Pre-Exposure Prophylaxis: Perceptions of Burden, Need, and Safety

Abstract

Uptake of pre-exposure prophylaxis (PrEP) has dramatically increased but remains well below the estimated number of individuals who could benefit from PrEP in the United States, and uptake remains limited among young men who have sex with men (YMSM) and MSM of color. Reasons for not adopting PrEP as a prevention strategy among those at elevated risk for HIV is an important area of inquiry that could advise efforts to better position PrEP as an active part of prevention programs. As part of a mixed methods study investigating experiences with repeat HIV testing, we identified main themes emerging from in-depth interview data pertaining to reasons why YMSM report not using PrEP, among YMSM with frequent access to HIV testing services. Themes from 14 in-depth interviews with predominantly Latino MSM for not using PrEP included perceived burden of daily dosing, feeling that risk was not high enough to warrant PrEP, and beliefs that PrEP would have severe adverse events affecting the kidneys and bones. Less prominent but noteworthy themes included stigma as a PrEP user, social or provider influence on decisions not to use PrEP, and preference for current prevention strategy. No differences in PrEP discourse were noted across those at different levels of HIV risk. Results suggest that efforts are needed to engage communities and individuals around PrEP-related education, facilitate risk evaluation, and reduce PrEP stigma. New formulations and nondaily regimens may also be of particular interest to YMSM who may perceive daily PrEP regimens as highly burdensome.

Introduction

Despite increasing availability and uptake of pre-exposure prophylaxis (PrEP) for HIV prevention, the majority of individuals in the United States who could benefit from PrEP are not current PrEP users.¹ PrEP remains particularly underutilized among young men who have sex with men (YMSM) and MSM of color who are disproportionately affected by the HIV epidemic, because of social and structural factors contributing to elevated HIV risk.^2,3 A number of barriers to uptake and use of PrEP have been identified in the literature to date, including limited access, prescriber discomfort or lack of knowledge, low community awareness or acceptance, stigma related to HIV medications or PrEP, or personal evaluations of being at low risk for HIV.^4–7 Recent article focusing on persons newly diagnosed with HIV suggests multiple potential missed opportunities to engage those at risk for HIV in PrEP services.⁸ A retrospective analyses of HIV cases in South Carolina between 2013 and 2016 identified that 66% of participants had interacted with the health care system before diagnosis and with a quarter or more of those being seen specifically for treatment of sexually transmitted infections.⁸

In another article, recently diagnosed black YMSM in the Deep South reported not using PrEP despite awareness because of a low perceived need, given the low number of sexual partners and low confidence in navigating health care systems.⁹ Studies suggest that YMSM are more accepting of PrEP when they have higher concerns about contracting HIV, yet a multitude of factors contribute to low use of PrEP despite high acceptance.^10,11 In fact, one study found 84% of YMSM participants were willing to take PrEP, yet only 16% were doing so.¹¹ In addition, although research shows that HIV testing is less dependent upon disclosure of sexual practices by YMSM to their health care provider than other preventative health care measures, suggesting more widespread utilization of HIV testing, a recent study found that 42% of black and Latino MSM had at least one missed opportunity for PrEP initiation.^12,13

As more programs offer PrEP across the United States, it is important to understand factors influencing decisions to not use PrEP among patients. To contribute to a better understanding of PrEP nonuse among young minority MSM, we assessed interviews collected as part of a larger repeat HIV testing project where enrollment was restricted to those specifically not taking PrEP in the past 12 months. From the 15 in-depth interviews exploring HIV prevention experiences, we sought to identify main themes in discussion content surrounding PrEP-related decision-making.

Methods

Sample

YMSM who repeatedly engaged in the “Good to Go” Program for HIV testing, formerly known as the Early Test Program, in San Diego, California,¹⁴ who were not on PrEP for at least the 12 previous months were interviewed. A total of 15 participants accessing free HIV testing through the program were identified and enrolled from the San Diego Primary Infection Research Consortium (PIRC). The community-based program offers free sexual health services including HIV testing (for acute and prevalent infection), testing and treatment for bacterial sexually transmitted infections, and access to same day antiretroviral treatment for persons newly identified with HIV infection and same day PrEP for persons at risk for HIV infection with negative HIV test results. During the program, participants were also surveyed for risk behaviors during the previous 3 months.

Purposive sampling was used to identify YMSM participants (i.e., age 18–24 years) who had (1) a recent Good to Go testing encounter where they indicated that they have not used PrEP in the previous 12 months, (2) a previous Good to Go testing encounter >3 and <24 months before the current testing encounter, and (3) fluent in English or Spanish. For each testing encounter, behavioral HIV risk was assessed and categorized through utilization of the San Diego Early Test (SDET) score,¹⁵ a validated risk-behavior-based score predictive of incident HIV infection. Over time risk scores were used to stratify participants into three HIV risk categories,¹⁵ namely increasing risk (n = 6), decreasing risk (n = 4), or stable risk (n = 5).

Data collection and measures

In addition to the SDET HIV risk assessment surveys, in-depth, in-person individual qualitative interviews were conducted based upon a semistructured interview guide with trained interviewers in private locations. Although PrEP was not a specific topic queried by interviewers per the interview guide, PrEP beliefs, attitudes, and reasons for not using PrEP could be brought up by participants in various parts of the interview as participants reflected on their experiences with HIV prevention. Content from each of the 15 interviews conducted were evaluate for PrEP-related content. De-identified transcripts were used to create the Dedoose database used in this evaluation.

Data coding and analyses

Discourse that offered any PrEP content were extracted and sorted iteratively into main themes using a thematic approach^16,17 with adaptation to allow for linking codes and applying both inductive and deductive thematic analysis.¹⁸ Each transcript was coded by one primary coder with full team discussions used to iteratively refine code book and reach consensus on main codes. Main coding was double coded for a selection of transcripts to further develop coding structure and consistent application of main content codes. The coders who interpreted the main themes were blinded to the individual risk category of participants until all coding was complete. After completion of all coding, coders were unblinded to participant risk groupings and subsequently reevaluated the data for potential differences in narratives between those at high and increasing risk per self-report of risk behavior on the SDET measure, in comparison with those with low or decreasing risk. Relative density of codes was characterized by the total number of excerpts with a given code, number, and percent of participants who had any PrEP-related discourse of a given code.

Results

Fourteen of the 15 participants who were interviewed in the main study discussed PrEP organically at various parts in the full interview. All 14 participants who discussed PrEP were between the ages of 19 and 24 years, identified as men, and reported sex with men. Of the 14 participants, 64.3% (n = 9) identified as Hispanic, 14.3% (n = 2) identified as non-Hispanic Asian, 14.3% (n = 2) identified as non-Hispanic white, and 7.1% (n = 1) identified as non-Hispanic American Indian. In addition, of the nine individuals who identified as Hispanic, three participants identified as Hispanic other race, two identified as white, and one identified as Hispanic black.

Eight nonorthogonal themes characterized PrEP-related discourse most comprehensively, with much of the content reflecting multiple themes. A total 43 excerpts over 14 participants were evaluated. Of these participants, three noted desire to eventually start PrEP and one had received a prescription but had not filled it. As indicated in Table 1, which includes exemplar quotes for each theme, participants provided multiple reasons why they did not pursue PrEP. Predominant themes (noted by nearly half of participants) being perceived burden, such as cost or time constraints, mis- or lack of information, and low perceived need. Other themes included the influence of conversations with others in their social network and conversations with providers, and preference to remain with one's current prevention strategies, stigmatizing beliefs about individuals who are on PrEP, and concerns about potential side-effects or long-term effects of PrEP.

Table 1.

Key Themes Regarding Pre-Exposure Prophylaxis Among Young Men Who Have Sex with Men

Themes	Description	Excerpts (n = 44), n/%	Participants (n = 14), n/%	Quote
Burden	Discourse noting that receiving or taking PrEP is a hassle or burden, and impacts the participant's perception and/or PrEP uptake decision	14/31.8	10/71.4	I feel like the main apprehension that I have is because my insurance isn't my own. So my insurance is still billed to my parents, and there's that, I don't know, barrier or something. It's something I'd rather not them ask me about, like “Oh, what is this?” I don't know how exactly it's billed for insurances. I haven't really looked into it, […] I know that is quite expensive without insurance and stuff, so, yeah, that's me. (22 y/o, non-Hispanic Asian)
	Specific burdens cited included physician and pharmacy visits, cost, consistent dosing, and insurance coverage
Low perceived need	Participants stated that they were not engaging in behaviors that they perceived put them at a high enough risk for contracting HIV to begin taking PrEP	12/27.3	9/64.3	I haven't engaged in, you know, in unprotected sex. So technically there's no rush to get it. (24 y/o, Hispanic black)
Extreme beliefs or lack of information	Beliefs held as facts regarding damage to kidneys, bones, or other negative physical impact of PrEP	17/38.6	8/57.1	Maybe two months ago I went to go get the testing so I can be put on PrEP, but the side effects scared the crap out of me. […] But that just scared the crap out of me because the liver one, they said that there's a higher possibility that your liver or your kidney would go back to its regular function and when it came to the bone they said that it's not promised that it would go back to its regular density. (22 y/o, Hispanic other race)
	Lack of information referred to participant discourse that noted lack of PrEP uptake because of being uninformed about PrEP			But I don't see any other information that would show me what the negative outcome would be if we were to take it constantly. And it's new, too. So, I don't know if there's been a lot of studies on it, especially because it's new and people are still taking in—Even though people have access and resources to it, I don't know—I don't have all the information to go off of it and to consider it. So, that's why. (21 y/o, Hispanic)
Social influence	Participants described both interpersonal and societal factors contributing to the decision not to begin taking PrEP, including the influence of conversations with others or going on in one's community	9/20.5	8/57.1	…I've heard both sides…like, “Don't take it because it has side effects,” and then I've heard, “Take it now or you'll take it later.” (23 y/o, Hispanic other race)
Current strategy preference	Discourse in which participants described believing their current protective approach to safe sex was better than starting PrEP	6/13.6	6/42.9	But in my instance, I think it's just better to have safe sex or be in a monogamous relationship than to put that much damage on my body. (19 y/o, non-Hispanic American Indian)
Discourse in reference to discussions with medical providers (potential PrEP prescribers) or service providers about PrEP	Noting decisions about PrEP not being appropriate	7/15.9	6/42.9	Before I went to my doctor to actually get the PrEP/PEP thing, I went to, I think, another doctor at [clinic name], because my doctor was closed. So, I went to that doctor, and he said, “Oh, you have nothing to worry about.” (23 y/o, non-Hispanic Asian)
PrEP stigma	Comments made suggesting that people who are on PrEP engage in riskier sexual behaviors	5/11.4	5/35.7	I think it'd be more likely to have sex without a condom if you use PrEP because you think you have that—not invincibility, but that extra shield, you know. (24 y/o, non-Hispanic white)
Other	Any reference to reasons not to begin using PrEP not previously captured in the themes above	7/15.9	5/35.7	I don't know why in my mind I kind of felt like it was—Oh.<laughs> It was a way for, like, the government to kill off all the homos. […] At any point I feel like they could just switch the pill on us and we wouldn't even know and then there could be a large death toll, I guess. (24 y/o, Hispanic white)
				But I wish they talked about what the consequences of it. Like, if you were going to take it, what would be them? Because I only see when they talk about the benefits, like when they have a flyer and they say, “Oh, it's proven to be 99.9 percent effective to not get HIV.” (21 y/o, Hispanic)

PrEP, pre-exposure prophylaxis; y/o, years old.

Burden

A major theme addressed by 10 participants (71.4%) was the burden of taking PrEP. “Burden” was defined as perceived costs or difficulty in tasks associated with the process of taking PrEP, ranging from cost to physical procedures. Participants were concerned about “spending the money on [PrEP],” and “taking a pill every day,” difficulty going to the pharmacy during work hours, and going to have their blood drawn and tested to take PrEP. Costs could also be interpersonal; one participant noted costs of starting PrEP included his parents seeing the prescription, as he was on their insurance.

Low perceived need

Nine participants (64.3%) discussed PrEP as a “provocative measure of protection” meaning their present risk of HIV contraction was too low to warrant use of PrEP. Participants in “a monogamous relationship” believed that they were not at risk of contracting HIV because of not engaging in “unprotected” or “risky” sexual encounters. Participants stated that they would take PrEP if they “chose to become very promiscuous” or had “multiple sexual partners in a short period of time.” In addition, four of the seven individuals who referenced a low perceived need for PrEP also cited preferring their current strategy of prevention over taking PrEP; participants felt that “it's just better to have safe sex or be in a monogamous relationship,” “always have a condom,” or “know the other person's status” than to take PrEP.

Extreme beliefs or lack of information

Almost 60.0% of participants (n = 8) shared reasons to not start PrEP that reflected misinformation. In many cases, there was a misunderstanding of product information related to the side-effects or potential consequences of PrEP use on renal or liver functioning and bone density. For example, participants believed that PrEP is “not a long-term solution, because it is damaging to the body,” that PrEP “messes with your bone health,” and that it is not recommended “that you take [PrEP] for more than… two years… because it is so damaging to your body.” Although not inaccurate, per se, the sentiment was far more augmented and focused on worst-case scenario than current evidence would suggest.

Some participants also mentioned a lack of information about current evidence related to the use of PrEP. Participants felt that they did not “know if there's been a lot of studies on [PrEP],” or that there were personally unaware of important information (e.g., [I] “don't know what kind of bone health issues” are caused by PrEP). Practical information about PrEP logistics (how to access PrEP, get it covered by insurance or availability of sources of support for cost coverage) also appeared lacking.

Other themes

Some unique themes that were not well represented across participants but warrant consideration were also identified. These included beliefs that the medication is regulated by the government and the truth behind what is in it or what it does is false, and medical mistrust-related concerns attributed to the true intentions of medical providers and researchers when they advocate for PrEP use. In addition, some participants made references to stigmatizing beliefs suggesting that individuals who use PrEP engage in riskier sexual behaviors, such as having multiple partners or refusal to use condoms. Participants also noted having discussions with providers, which dissuaded them from initiating PrEP, and influence by peers and those in their social networks leading to realizations of the potential side effects of PrEP, discussions with peers about their beliefs regarding the sexual behaviors of those who use PrEP, and reactions to social media profile indicators of PrEP use by others.

Risk scores

Of the 14 participants who discussed PrEP, 7 were scored as increasing or consistent high HIV risk, and 7 participants were classified as decreasing or stable low risk. When asked to describe their perceived risk of contracting HIV on a scale from 0 to 100, 64.3% of participants felt they were at low risk (0–39) and 28.6% believed they were at moderate risk (40–69). Only one participant felt that his behaviors and/or sexual practices placed him at high risk (70–100) of contracting HIV in the future. No consistent differences were identified in PrEP discourse between those at higher risk for HIV (stable high or increasing risk) and those at lower risk.

Discussion

The findings of this brief report provide some insight into reasons YMSM who engage frequently in HIV testing do not use PrEP. These reasons include daily PrEP feeling burdensome, strongly held beliefs about long- and short-term negative effects of PrEP on bones and internal organs, feeling PrEP is not needed (perceived no or low risk for HIV exposure regardless of risk scale scores), feeling social pressure to take or to avoid PrEP, and stigmatizing beliefs about individuals who use PrEP. Extreme beliefs and lack of information focused largely on bodily safety concerns in relation to using PrEP. It is important to note that distrust of PrEP among participants can indicate lack of trust in providers or the nation's health care system in general, particularly because of the stigmatization and discrimination against this population that has occurred for decades.

The findings from these interviews should be interpreted with some caution, as the sample size is limited and exploration of PrEP was not a part of the a priori interview guides. The majority of participants identified as Hispanic/Latinx. Although this makes for unique contributions, it may also limit findings to similar populations. In addition, participants were recruited from an LGBTQ+ friendly setting in which they generally felt comfortable discussing a multitude of experiences, needs, and feelings around their sexual health practices, particularly being a part of the LGBTQ+ community. Therefore, these findings may not be representative of experiences of individuals in less LGBTQ+ friendly settings. Of importance, because inclusion criteria in the parent study insured no PrEP use in the past 12 months, we cannot speak to whether or not the themes identified among those not using PrEP are unique or different from attitudes and beliefs of those who have recently used PrEP. We have no “on-PrEP” comparator. Themes, however, do center on reasons for nonuse, suggesting that these would be unique to nonusers.

More focused work is needed to better understand global themes that were identified, such as learning more about how YMSM evaluate their “need for PrEP,” or how YMSM maintain perceptions of low risk for HIV while also reporting behaviors that place them at elevated risk. Work focused on how best to deliver information and offer education on PrEP from trusted sources to this population is necessary as well. In addition, in considering these findings, the interviewees in our sample were all located in one geographic area where PrEP is comparatively easy to access and PrEP discussions occur commonly within local MSM social networks. As PrEP rolls out in different areas in the United States, local detailing around PrEP perceptions, beliefs, access, and social pressures is recommended.

In considering why YMSM who repeatedly engaged with HIV prevention services do not use PrEP, a number of factors that would be amendable to focused education and awareness strategies emerged in our analysis. As many participants noted there were social influences associated with their decision not to begin taking PrEP, social media and advertising campaigns may provide a plausible avenue for the correction of extreme beliefs and the dissemination of educational materials regarding both PrEP and the continued health threat and severity of HIV. It should be emphasized that insurance availability and the level of support that providers have for prescribing PrEP to YMSM are critical concerns that can impact PrEP use in this population.^13,19 Helping providers to talk through PrEP decision-making with individual at risk for HIV, offering tools to help YMSM gauge their risk for HIV, and navigation programs to facilitate ease of PrEP access may impact uptake. Other factors, such as concerns about side-effects or desires to adopt less burdensome (e.g., nondaily) regimens may be addressed as new products and regimens become available in the United States.

Authors' Contributions

J.F., M.L.M., and L.S. conducted all in-person interviews with participants. A.E., J.M., and K.M.H. assisted with thematic coding analysis of interviews. M.H. and K.R.A. were the principal investigators of the project and oversaw and/or contributed to all aspects of the project. K.M.H., J.M., and K.R.A. drafted the article, and all other authors provided critical content and revisions. All authors approved the final version of the article.

Author Disclosure Statement

Dr. Hoenigl reports grant funding from Gilead Sciences (ongoing) outside the submitted work. Dr. Amico reports a grant from Gilead Sciences (ended in December 2017) outside the submitted work. Authors not named here have disclosed no conflicts of interest.

Funding Information

Primary funding source National Institutes of Health (NIH) (M.H.). Research was also supported by the National Institutes of Health: AI036214, MH062512, AI106039, DA039767, 3R01DA040648-02S1, T32DA023356, and K01DA039767. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.