depicts key participant characteristics, by county. Participants ranged between 21 to 58
years of age. Overall, approximately three-quarters of our sample stated that they are employed, two-thirds reported some type of health insurance, and all but one had completed high school, suggesting a relatively educated sample. Although many expressed personal reservations, 23 of the 30 participants (76%) indicated that they were willing to consider the use of PrEP.
Three major themes emerged from the dataset. First, participants displayed a considerable lack of awareness and knowledge surrounding PrEP. Second, participants expressed ambivalence towards successfully integrating PrEP within their existing personal HIV prevention efforts. Finally, participants noted concerns about the rollout of PrEP, in that they either worried that the branding of PrEP as a prevention tool may leave out critical components of the trial intervention, or that the scale-up of PrEP within the healthcare system may exclude sub-populations of impacted communities. We include a summary of these findings in Table
. Below, we contextualize each finding with reference to participant data. We acknowledge that within these themes there exist topics where participant beliefs surrounding PrEP acceptability were not always mutually exclusively. Thus, we categorized findings into selected themes based on the context in which the participant described particular phenomena.
Summary of community member perspectives on the uptake and implementation of PrEP at the population level
Finding one: Community members are unaware and/or unknowledgeable about PrEP
By and large, participants from all counties had never heard of PrEP. Statements such as ‘I do not know what PrEP is. I have no knowledge of that information’ (31, White MSM, LA) were prominent. For those who had heard of PrEP prior to the interview, correct information was strongly overshadowed by mis-communicated facts and confusion with other treatments, particularly with post-exposure prophylaxis (PEP)
], ‘…There’s PrEP and PEP, I get those two mixed up’ (42, Black MSM, SF); ‘It’s like the morning after pill so you won’t get pregnant, I think that’s the same type of pill’ (45, Black MSM, SF). Indeed, the notion of a ‘morning after pill’ in recounting PrEP information was expressed by the majority of participants who considered themselves knowledgeable about PrEP, and suggests confusion in regards to how ARVs function in an increasingly biomedically-focused HIV-prevention field.
Participants who reported limited PrEP knowledge tended to also report mistrust of medical systems and pharmaceutical companies, as well as discrimination within the medical industry. In particular, these issues were salient for Black participants:
‘Because I’m suspicious of the pharmaceutical companies, and—there are a lot of rumors about pharmaceutical companies. Then friends of mine, who are—especially African-American men, who are suspicious of clinical trials… so there are always issues about the Tuskegee syphilis trials, and there’s always this suspicion, especially among a lot of Black people I know, that these trials are just hidden ways of genocide, and things like that—and they don’t feel comfortable. I’m talking from the transgender thing, the transgender girls said they’re not comfortable with the way they [providers] look at them or treat them… And that’s sad. That’s really sad, especially here in San Francisco’ (54, Black MSM, SF).
However, these sentiments were not limited by ethnoracial minority identity:
‘Because I just feel more capable of taking care of my sexual health because I feel like my doctors are not capable of taking care of my sexual health. They’re uneducated, they’re ignorant, they’re very heterocentric, almost homophobic. It just doesn’t jive… I mean it was the US government that was infecting people with syphilis, gonorrhea, and other STIs to see what they’re gonna do. So I will never trust the state to invest itself in my health and my awareness, as a poor person’ (25, White MSM, Alameda).
A minority of participants noted that they believed PrEP would be ineffective, ‘this pill is a good idea but I don’t think it’s gonna work…’ (44, Black MSM, SF). Others expressed that they did not see the purpose of PrEP, ‘Why take the medication if you don’t need to? If you’re having so-called safe sex with a condom? With the use of a condom, then there’s no need to ingest any medication’ (36, Latino MSM, LA). Nonetheless, upon hearing of the efficacy of the iPrEx Study results several participants felt that PrEP would make a ‘good back-up plan,’ (e.g., in cases where a condom broke), but that more information was needed.
Finding two: Community members expressed mixed interest in personally receiving PrEP
Given the format of the semi-structured interview, and recognizing that the interview was the first time that many participants learned of PrEP (or gained correct PrEP information), thoughts and perspectives regarding their personal willingness to use PrEP often shifted during the interview process, and related to six key factors: the individual’s sexual-risk assessment; beliefs that PrEP would connect them to care and treatment; knowledge of side effects; perceived effectiveness of the intervention; self-awareness of medication adherence; and cost.
With respect to personal risk assessment, several community members reflected on their preferences to not use condoms, as well as instances where they have previously engaged in risky sexual behaviors. These individuals believed that an intervention such as PrEP might fit well with their current behaviors:
‘Well to be honest, I don’t like using condoms myself. If I took PrEP, then I still wouldn’t use a condom, but I would feel better taking—I would be less worried or paranoid about getting HIV by using PrEP than I would if I weren’t using PrEP,’ (48, Black MSM, SF).
‘The reason I would take it is because I know that sometimes my behavior does get risky, especially when I use drugs… so yeah, I absolutely would take anything to prevent anything if my judgment goes down the toilet and I don’t use protection,’ (29, Black MSM, Alameda).
One major motivator for the uptake of PrEP, as described by our participants, is its potential to link individuals to care. For example, participants described how community members who have traditionally not accessed health services could be linked to prevention programs if a PrEP intervention were in place:
‘And when it’s prescribed by a doctor, it’s part of your entire medical treatment… and so I think that’s important, and that’s good—yeah, we’re gonna prescribe this to you but we’re gonna also require you to have counseling and explain to you this and talk about abstinence and condom and low-risk and needle exchange and the nine thousand things that you should be thinking about, and not just pop a pill, have fun,’ (54, Black MSM, SF).
In addition to having the potential to link individuals to prevention services, participants noted the potential of PrEP to link community members to treatment services if they were to seroconvert while on PrEP, ‘But the good part will be, if they will get infected, they will be linked to care more easily,’ (25, Latina transwoman, LA).
Importantly, participants’ concerns and knowledge of PrEP side effects played a major role in swaying their personal pendulum of willingness to take PrEP: ‘My decision would be all because of side effects,’ (32, Mixed-race MSM, Alameda). Given the mild side effects in the iPrEx study, there was a spectrum of opinions regarding what tolerable side effects may be. In general, if the side effects were not severe (e.g., headache, nausea, loss of sleep) or faded over time then participants were more likely to report willingness to use PrEP. Some side effects that participants reported as ‘deal-breakers’ were long-term damage to kidneys, sexual dysfunction (e.g., failure to maintain an erection), and ‘serious bone damage.’ A few noted fears of complications with existing morbidities:
‘Then that’s another thing that would scare me. ‘Cause I’m also—I’m a diabetic. I have Type 2 diabetes, and I also have high blood pressure… Usually a lot of people who suffer from diabetes are already having kidney problems… If I take this medicine will it make it worse?’ (49, Black transwoman, SF).
Still, there were a select number of participants who explained that ‘there’s gonna be side effects to everything, no matter what you do,’ (39, White MSM, SF), so they would be willing to take PrEP, as an intervention package, regardless of the side effects.
Participants also weighed the efficacy of PrEP in their willingness decisions. Those who focused on adherence and a 70% PrEP efficacy tended to speak more favorably of ARVs as prevention than those who focused on the overall 44% efficacy:
‘Well, I think—I’m in a high risk, because I don’t like using condoms when I have sex also. So if its’ been proven to actually reduce to 70% of the people who took the PrEP drug, then I’d be willing to try it also. I mean, as long as there are no side effects or anything like that, you know?’ (48, Black MSM, SF).
‘Well I’m just saying, if you take something every day, and you only have a 44% chance of preventing, getting what it’s suppose to prevent, then we’re not even talking 50/50, we’re talking a little less than 50%, or a little more than 50% getting HIV. So it’s kind of grim,’ (59, White MSM, SF).
When poised with the question of whether taking a daily pill would interrupt their regular health service schedule, those who had established routines exclaimed:
‘No. I already see a doctor once a month. I see my psychiatrist once a month, and I see my primary care doctor once every six months, so I don’t have a problem, actually, adhering to a certain regimen,’ (48, Black MSM, SF).
In fact, those who reported daily use of other medications such as high-blood pressure, psychiatric, or diabetes medications, as well as multi-vitamins and other supplements, tended to speak favorably on their personal willingness to use PrEP.
Others commented on the added responsibility of taking a daily pill, ‘it’s a little hard for me to do something on a regular basis, all the time, every time, at the same time,’ (46, Latino MSM, Alameda); which would be compounded by the ‘burden’ of ongoing regular medical monitoring. In light of this consideration, some participants alluded to the thought of occasional (i.e., intermittent) PrEP use, as well as other dosing alternatives that could make adherence more acceptable:
‘If it was something I could take monthly, PrEP would be amazing. Like first of the month when I get paid, I take a pill, awesome! I can calendar it out. But on a daily basis man, that would be difficult!’ (25, White MSM, Alameda).
Our participants described that the next major barrier to PrEP uptake, both in terms of personal and community level perceptions, was that of cost. In discussing their financial threshold for PrEP, reported values ranged between $5 and $500 per month; with the majority of participants describing an average of $20 to $25 per month as a ‘reasonable’ amount. Some descriptive thresholds included, ‘the price of a cup of coffee,’ or ‘about the same as daily vitamins,’ and for those with insurance, ‘about an average drug co-pay.’ These amounts and associated willingness to use PrEP, however, were based on theoretical situations if cost was at least partially covered. The realities of PrEP payment and willingness to use varied by individual; ‘…because I’m poor, so I imagine it would affect the chance of me using it. And my friends are poor,’ (35, Latino MSM, LA). In one extreme case, a non-insured participant commented that without any type of insurance or financial assistance, the prospect of acquiring disease and receiving no-cost services would be most opportune for his situation:
‘I would be very honest, but if you are asking me to pay $12,000 for a preventive pill, whereas if I get the virus, I go to a free clinic and I’m going to get all the drugs for free, as stupid as it sounds, I’d probably prefer to have the virus and have my drugs for free…’ (37, Latino MSM, LA).
Even still, for some, the use of male condoms made for a less burdensome and more cost-effective choice.
‘Using a condom is much better… because just no tests. I don’t have to go to the doctor every month, I don’t have to be tested. I don’t’ have to keep paying to get the medicine—It’s a hassle,’ (22, Black MSM, Alameda).
Finding three: Community members noted concerns regarding the rollout of PrEP
The ways in which PrEP will be presented to the community, and its potential to impact sexual-risk behavior, was of utmost importance to participants. Most in the study believed that their personal sexual-risk behaviors would not increase if they were to begin a PrEP regimen, ‘and I don’t think it would encourage me to engage in more high-risk behavior,’ (54, Black MSM, SF). However, participants expressed fears of disinhibition occurring among their peers at the population level:
‘Well, in the community, the African American community and gay community, there’s not a whole lot of condom use going on anyway. So if they hear about this drug—it’s like, oh it prevents you from getting HIV! People are gonna run with that. It’s gonna be like-people will be tryin’ to get these pills like they get street drugs…. so it will lessen the condom use, definitely…’ (30, Black MSM, Alameda).
‘Oh my god! I think it would be a crazy thing. It would be like—people would be popping all these pills and not taking care of themselves… Like not using condoms, because they feel that, ‘oh I’m not going to get it, because I’m taking these pill,’ or ‘oh, I could have unprotected sex and go pop a pill’… I just feel that would happen in my community. Just crazy, just—oh ya,’ (25, Latina transwoman, LA).
It should also be noted that a select number of college-educated participants reported that population-level disinhibition may be unfounded speculation. These individuals attributed their sentiments to their perception that condomless sex was already occurring within MSM populations:
‘It’s been my experience that people’s willingness to use condoms has already decreased significantly, and so I don’t think that this is going to add to that decrease that much. It seems like this is a good response to behaviors that are already happening – the decrease of condom usage,’ (28, White MSM, SF).
Many participants noted that the delivery of PrEP, as suggested in previously provided quotes, should be more than promotion of daily ARV adherence. Participants stated fears that the medication portion of a PrEP intervention would be prioritized over condom use and education. Some participants explained that sometimes ‘life shows up’ and that for those who are not connected to stable social support and clinical care services, ‘it’s not gonna be a real successful thing to get them into counseling,’ (47, Black transwoman, Alameda), because they are already lacking adequate access.
In highlighting the significance of the educational component of a PrEP intervention package, a younger San Franciscan, who happened to be a health educator, framed the discussion in a historical context:
‘We did a great deal of education when the HIV crisis hit and we learned that condoms prevent HIV, and I don’t think that we continue to do that kind of education that happened. And so I think it just needs a massive education campaign and a community buy-in. I think that’s a large part of it, too, and the community doesn’t have that buy-in right now…’ (28, White MSM, SF).
Participants often discussed the notion of equity and access in relation to health disparities, as well as the question of who should financially support an effective PrEP rollout. One participant exclaimed that the responsibility of marketing PrEP to populations affected by the epidemic should fall on pharmaceutical companies who manufacture ARVs, ‘I would personally say that whoever created this medication, if they’re going to charge $12,000… then they should also have money set aside to also target the communities,’ (36, Latino MSM, LA). Feelings of, ‘I think this would actually cause people to feel discriminated against, because it’s the people who can afford and the people who can’t,’ (42, White MSM, LA), were also common among the narratives. While many framed the issue of access along socioeconomic lines, the only participant to possess a doctoral degree framed the issue of equity in regards to the belief that resources will be put towards HIV uninfected persons and not to those living with HIV. ‘It seems as like [though] more of the research has been going to preventing it [HIV], and not so much the people who actually have it,’ (42, White MSM, LA). Another participant concisely expressed the response of others in the study, ‘So obviously, if this is going to exist for the community, then hopefully something will be done in which everyone can afford it—not just the wealthy or the upper middle class,’ (36, Latino MSM, LA).
Individuals stated that ‘high-risk folks,’ including those with multiple partners, those who dislike the use of condoms, those who practice serosorting (i.e., choosing sexual partners based on their perceived HIV status), those who use illicit substances, and those who engage in sex work, would be good candidates for tailored PrEP marketing and implementation:
‘I think—in looking at the big issue for me is, how do we—the prevention part. How do we help the prevention part of it? When people are still gonna make stupid decisions, which is, let’s call it what it is. And that’s the high-risk folks. Then this is gonna be something good for them… so I think something like this could benefit a low socioeconomic community like ours, low education—and low-educated not just college, but just on the issue of protection,’ (31, Latino male, LA).
‘But the people that really need it are the people that are living in SROs [single room occupancy; government-subsidized housing], on GA [general assistance], Social Security SSI [supplemental social security income] or whatever they’re on… But if they gotta pay for it, you’re just gonna be sitting there with a bunch of pills,’ (44, Black MSM, SF).
By underscoring the significance of PrEP utilization and its importance in reducing sexual and gender minority health disparities, the following reflections of an older Black transwoman, who reported often engaging in unprotected receptive anal intercourse, puts into context the potential of translating iPrEx Study results into population-level settings:
‘Well, I didn’t know, like I told you when I came in, much about it [PrEP]. I’ve heard about it. But I think I have a more clear understanding, and I think it would be something very good for the LGBT community. We as a people are very sexually active. That’s our stigma. We probably always will be. We have younger LGBT members coming up, we have trans, lesbians, gays or whatever, and I think this drug would be just what is needed to help our community, to save our community, and I’m very much interested in learning more about it. I really am… We do get individuals that need some prevention in life and want some type of prevention, and this particular drug seems like it will do, if only for the 44 percent. It will do what needs to be done. The rest is up to me and to each individual that takes it, to make sure that we’re following through with the counseling, following through with the doctor visits, just to make sure, or following through with changing our diet, our eating habits. And in cases of, it has to be a condom, making sure that we use a condom, until we can be conclusive that this drug can be taken without the use of a condom and still prove to be successful at lowering the cases of HIV and AIDS in our community,’ (47, Black transwoman, Alameda).