‘I am not a man’: Trans-specific barriers and facilitators to PrEP acceptability among transgender women

Abstract

The frequent conflation of transgender (‘trans’) women with ‘men who have sex with men (MSM)’ in HIV prevention obscures trans women’s unique gender identities, social and behavioural vulnerabilities, and their disproportionately high rates of HIV infection. Pre-exposure prophylaxis (PrEP) is an efficacious biomedical HIV prevention approach. However, trans women are underrepresented in PrEP research, and are often aggregated with MSM without consideration for their unique positions within sociocultural contexts. This study examined PrEP acceptability among trans women via three focus groups and nine individual interviews (total N = 30) in San Francisco. While knowledge of PrEP was low, interest was relatively high once participants were informed. Due to past negative healthcare experiences, ability to obtain PrEP from a trans-competent provider was cited as essential to PrEP uptake and adherence. Participants noted that PrEP could address situations in which trans women experience reduced power to negotiate safer sex, including sex work. Trans-specific barriers included lack of trans-inclusive marketing of PrEP, prioritisation of hormone use, and medical mistrust due to transphobia. Findings underscore the importance of disaggregating trans women from MSM in HIV prevention strategies to mitigate disparate risk among this highly vulnerable population.

Introduction

The behavioural category ‘men who have sex with men (MSM)’ has been in use in HIV-related public health literature since at least the early 1990s (Boellstorff, 2011). In an effort to acknowledge the fact that behaviours, not identities, put people at risk for HIV acquisition, epidemiologists advocated for a conceptual shift away from identity-based understandings of HIV risk. While it is true that sexual transmission of HIV depends on certain behaviours, use of the term ‘MSM’ as a behavioural risk category has been criticised for obscuring sociocultural heterogeneities within this population that are crucial to promoting sexual health and preventing HIV (Boellstorff, 2011; Young & Meyer, 2005). In an article critiquing the use of the behavioural categories ‘MSM’ and ‘WSW’ (‘women who have sex with women’) in HIV prevention literature, Young and Meyer (2005) discuss how these terms undermine the identities of sexual minorities, disregard social meanings of sexuality, and ultimately fail in their aim to describe sexual behaviour. While transgender women were not explicitly considered in their analysis, the implications of the erasure of sociocultural nuances within these terms are applicable to problematising the inclusion of transgender women within the behavioural category MSM.

While conceptualisations of gender and sexuality vary cross-culturally, the term ‘transgender’ has recently gained broader popularity in both the Global North and Global South. While the term originated and is currently more widely used in North America and Europe, the term is now being used to organise gender nonconforming people politically in other places such as South America (REDLACTRANS), South Africa (Gender DynamiX), Asia (TransgenderASIA), and the Middle East (MARSA). While culturally specific nuances of gender may not be fully captured by the term ‘transgender’, many activists all over the world find it a useful rubric under which to organise people who experience gender-based oppression (e.g. Global Action for Trans* Equality). Some organisers choose to shorten the term to ‘trans’ or ‘trans*’ to indicate inclusivity of other trans identities, such as transsexual.

In this paper, we will use the term ‘trans women’ to refer to people with a feminine and/or female gender identity who were assigned male sex at birth. We focus specifically on the implications of the aggregation of trans women within the behavioural risk group MSM in the sociocultural context of San Francisco, although our findings and discussion likely have wider applicability within the Global North, where resources for HIV prevention interventions may be more abundant than in other areas of the world.

Historically, trans women have been subsumed under the behavioural risk group ‘MSM’, obscuring their unique risks and prevention needs and hindering our understanding of accurate HIV prevalence and incidence rates globally. If considered at all, trans women are usually included in very small numbers or are referred to using the phrase ‘MSM and transgender women’, without disaggregation when presenting results or implications of research findings. While the advent of the MSM category aimed to avoid addressing the complexities of identities by describing behaviour, the imposition of the category on a heterogeneous group of people is certainly not devoid of cultural meaning. How we count and categorise people in public health research reveals a great deal about cultural attitudes and social constructions, and also shapes those attitudes and constructions (Young & Meyer, 2005). By subsuming trans women within the category MSM researchers convey several beliefs, including: (1) trans women are, in essence, men, (2) gender identity is not important in understanding sexual health and preventing HIV, and (3) trans women’s sexual practices and experiences are essentially the same as those of men who are included in this category (Fiereck, 2013). None of these beliefs has been supported by the literature on trans women’s sexual health, and overriding self-determined gender identity with public health notions of biology-driven sexual behaviour has likely exacerbated the HIV disparities experienced by trans women. In fact, gender affirmation (i.e. social and/or medical affirmation of one’s gender identity) has been demonstrated to be a significant driver of both sexual risk taking as well as health care seeking behaviours among trans women (Colton Meier, Fitzgerald, Pardo, & Babcock, 2011; Nuttbrock, Rosenblum, & Blumenstein, 2002; Nuttbrock et al., 2009; Sevelius, 2013). Such psychosocial differences between trans women and MSM are important to fully characterise the disparities experienced by trans women, but cannot be elucidated in research that aggregates the two groups, privileging one sociocultural context over the other (Fiereck, 2013).

While trans people continue to be excluded from national data collection efforts, it is clear from meta-analyses of regional studies that trans women are disproportionately affected by HIV compared to all other groups. Internationally, trans women have 49 times higher odds of HIV infection compared to the general adult population (Baral et al., 2013) and in the USA they have the highest rates of new diagnoses by gender (2.1%, compared to 1.2% among men and 0.4% among women) (CDC, 2011). Because trans women’s rates of HIV are higher than those of MSM, trans women may drive up the perceived prevalence among MSM in studies that aggregate trans women with MSM. Funding for HIV prevention efforts is then procured for MSM based on these HIV rates, but the programmes and prevention strategies that are subsequently developed are designed for men. Trans women’s unique sociocultural issues and contexts of risk are not considered or addressed in prevention programming designed for men, and trans women often do not feel safe or welcome accessing these programmes. For example, although some MSM engage in sex work, due to pervasive economic marginalisation trans women have higher rates of lifetime engagement in sex work and it has been shown to be a prominent aspect of urban trans women’s sociocultural context (Nadal, Davidoff, & Fujii-Doe, 2014). Furthermore, trans female sex workers have higher rates of HIV than non-trans male sex workers (Operario, Soma, & Underhill, 2008). Thus, sex work is a critical theme in HIV prevention programming for trans women, but is often minimally incorporated, if at all, into HIV prevention programming developed for MSM, even when that programming purports to be inclusive.

Recently, substantial attention has been paid to pre-exposure prophylaxis (PrEP), the newest and most promising biomedical HIV prevention intervention yet developed and tested. The first clinical trial of PrEP (the Chemoprophylaxis for HIV Prevention in Men study, also known as ‘iPrEx’) included high-risk MSM and trans women and found that PrEP reduced the risk of HIV acquisition by 44% (Grant et al., 2010). However, a subanalysis of the iPrEx data found no efficacy among the small subgroup of trans women in the study (Mascolini, 2011). Further analyses of the subgroup of trans women in iPrEx highlight unequal drug levels between MSM and trans women in the study. Lower levels of uptake and adherence among trans women likely contributed heavily to the differential rates of efficacy, but the interaction of PrEP with hormones cannot yet be fully ruled out due to the lack of pharmacokinetic studies (Deutsch et al., 2015). Of the seven clinical trials of PrEP for HIV prevention conducted to date, iPrEx is the only one with confirmed enrolment of trans women (Escudero et al., 2014).

Currently, there are no guidelines for PrEP demonstration projects that provide specific considerations for PrEP dissemination to trans women. While the World Health Organization guidance mentions trans women but does not consider their needs specifically, guidance from the Centers for Disease Control and Prevention fails to mention them at all (Centers for Disease Control and Prevention, 2011; World Health Organization, 2012). To date, PrEP demonstration projects have reported low or unclear levels of enrolment of trans women (Liu et al., 2014). Furthermore, a recently published study examined levels of knowledge, indications, and willingness to take PrEP among a population-based sample of 233 trans women in San Francisco (Wilson, Jin, Liu, & Raymond, 2015). Only 13.7% of their participants had heard of PrEP, despite the fact that San Francisco was a participating site in the three-city PrEP Demo Project and iPrEx results were widely disseminated locally. This is not surprising, due to the lack of trans-specific recruitment and retention strategies or data to guide trans-inclusive implementation. This finding underscores the fact that trans women are not reached by the same information networks as MSM and do not benefit from HIV prevention programming that is designed for MSM. The lack of attention to trans women’s unique barriers to adherence in iPrEx and to the sociocultural context of trans women’s lives that may affect PrEP uptake and adherence in demonstration projects exemplify how privileging the anatomy (or the assumed anatomy in the case of trans women who have had genital surgery) over sociocultural context of sexual risk results in HIV prevention strategies that perpetuate HIV-related disparities (Fiereck, 2013).

One published study of PrEP acceptability with adequate numbers of trans women was conducted in Chang Mai, Thailand (Yang et al., 2013). This study of 107 trans women and 131 MSM found that while overall PrEP acceptability was similar between the two groups, sexual behaviours, patterns of medication use, and correlates of PrEP acceptability significantly differed between the two groups. For example, trans women in the sample were more likely to exclusively engage in receptive anal sex, which may impact their HIV risk perception and thus their willingness to take PrEP (Yang et al., 2013).

The relative invisibility of trans women in studies of MSM has significant consequences for informing the structure of programming and access to PrEP. As the history of HIV prevention and treatment research has demonstrated, trans women have been left behind (Sevelius, Keatley, & Gutierrez-Mock, 2011), and they have higher rates of HIV than any group as well as higher rates of morbidity and mortality (Baral et al., 2013; Centers for Disease Control and Prevention, 2008; Herbst et al., 2008; San Francisco Department of Public Health, 2014). To date, PrEP research has repeated this pattern.

Purpose of the study

PrEP researchers have called for trans-specific research on PrEP knowledge and acceptability (Escudero et al., 2014; Golub, Gamarel, Rendina, Surace, & Lelutiu-Weinberger, 2013). To date, no published qualitative studies of facilitators and barriers to PrEP uptake have disaggregated trans women from MSM to examine the unique interests and concerns expressed by trans women. Our main objective for this study was to address this gap in the literature by exploring trans-specific facilitators and barriers to PrEP acceptability among a sample of urban trans women at risk for HIV acquisition.

Methods

From January to June 2014, the study team recruited adult participants from community-based organisations and service sites in the San Francisco Bay Area and via snowball sampling. We conducted three focus groups and nine individual qualitative interviews with trans women (total N = 30 unique participants) focused on their knowledge of, interest in, perceptions of, and concerns about PrEP as an HIV prevention strategy. Each focus group had seven participants, for a total of 21 focus group participants. Nine participants completed individual interviews. While focus groups are useful to explore community norms, individual interviews allowed participants to express personal preferences. Because we wished to document both, we used both methodologies. Interviews lasted approximately 60 minutes; focus groups ranged from 60 to 90 minutes. In-depth interviews were conducted by trained peer staff at a community-based organisation and focus groups were conducted by a trained peer facilitator. Many of the focus group members knew each other prior to participation due to tightly knit social networks among trans women in the San Francisco Bay Area. Topics included current knowledge about PrEP, appropriateness of PrEP as an HIV prevention strategy for trans women, thoughts about accessing and remaining adherent to PrEP, concerns about PrEP, efficacy of PrEP, stigma related to taking PrEP, willingness to regularly see a healthcare provider and test for HIV, and experiences and interactions with medical and pharmacy-based providers. Participants provided verbal consent and received a $30 stipend to help defray transportation costs and time. All study procedures were reviewed and approved by the University of California San Francisco Committee on Human Research.

The in-depth interviews and focus groups were recorded and transcribed verbatim by a professional transcriptionist. Project staff also took extensive notes during focus group discussions, to capture the tone of the group, body language of the participants, and flow of the discussion and topics. All transcripts and notes were analysed using concept analysis (Walker & Avant, 2005). Concept analysis is a useful approach to analysing qualitative data collected to answer questions that are guided by a central concept and are relatively structured. For our study, we were particularly interested in learning about trans women’s unique perspectives on PrEP acceptability, which was the organising principle guiding the endeavour. Codes or major themes in the data were derived from interview and focus group guides, with flexibility for in vivo codes to emerge during the analytic process. Example codes included ‘interest in/willingness to take PrEP’, ‘problems with MSM focus’, and ‘HIV stigma’. The first and senior authors read a subset of two interview transcripts and notes to create potential codes. We then met to discuss the codes and their use in three different interview transcripts. Based on these discussions, we found some variability in our coding and identified additional emergent themes in the data, which we took into account in our next iteration of the codebook. Using the revised codebook to code one additional transcript, we then finalised the codebook. With the establishment of the codebook, each individual interview and focus group transcript was coded using Atlas.ti by the first author and senior author. The team compared coding strategies within two transcripts, identified segments where coding was discrepant, and used subsequent meetings to clarify use of the codes and create more consistency in their application across the dataset. Once the data were coded, we generated reports of segments associated with a code of interest. These reports were synthesised to facilitate discussion of the findings then elaborated upon in analytic memos. Analytic memos were written for focus group transcripts to illuminate community norms and for individual interview transcripts to compare experiences of trans women across the sample. For example, analytic memos included notes about issues such as community-level beliefs about HIV stigma as it intersects with transphobia, and comparisons of differing individual experiences with medication management. We have chosen quotes from participants that are reflective of the variety of perspectives that trans women expressed, to provide a sense of the range of perspectives.

Eligibility criteria included being at least 18 years of age, sexually active within the past 3 months, assigned male sex at birth and reporting gender identity as female, transgender female, or another trans identity indicating that they did not identify as male. Participants ranged in age from 21 to 51, with a mean age of 36. The majority (n = 22, 74%) self-identified as a person of colour (see Table 1).

Table 1.

Demographics.

	N (%)
Race/ethnicity
African-American	5 (17)
Latina	6 (20)
White	8 (26)
Multiracial	11 (36)
Mean age	36 (range 21–51)
Education
Less than high school	8 (27)
High school/GED	8 (27)
Some college	11 (37)
College or tech degree	3 (10)
Post-graduate	0 (0)
Housing status
Stably housed	12 (40)
Unstably housed/Marginally housed	18 (60)

Results

Knowledge of and interest in PrEP

Across both the focus groups and individual interviews, participants reported very little knowledge of PrEP (only one participant had extensive knowledge of PrEP because she worked in HIV prevention); many confused PrEP with post-exposure prophylaxis. None of the participants reported having ever taken PrEP, none reported knowing of any trans woman who had taken or was taking PrEP, and none of the trans women had a medical provider ever mention or offer PrEP to them. During an interview, one participant became angry when she learned of PrEP because her doctor had not mentioned it to her, despite knowing she was engaging in risky sexual activities and was also an HIV doctor.

You can’t just – Oh, we’re going to give you drugs after you get HIV. That’s not okay. That’s really cruel, in fact. Like, if a doctor is going to be keeping himself in the dark about something – like, it’s one thing to not know about it, it’s another thing to know about it and not learn about it or tell your patients about it. That’s just awful. [Participant 1]

While knowledge of PrEP was low, once participants were informed about PrEP, interest in PrEP use as an HIV prevention strategy was relatively high. Many participants stated that they would be willing to get tested for HIV every three months and see their doctor monthly in order to be on PrEP.

When I first initially heard of the concept, my first thoughts I guess would be under the stigma umbrella. ‘Oh, so it’s an HIV med’, is the first thing I thought. Yes, that was my first impression. Then after that, I was like – when I got a little more informed about the situation, I said, ‘oh wow, this would be a really great alternative for somebody.’ [Participant 7]

Barriers and facilitators to PrEP acceptability

Some of the barriers and facilitators to PrEP uptake and acceptability identified by the participants are common to many populations affected by HIV, such as concerns about cost, potential side effects, and wanting additional education about the risk of drug resistance if one were to become positive. Because the aim of this study is to address the gap in knowledge about trans-specific barriers and facilitators to PrEP uptake and acceptability, our findings focus on issues that were raised that are unique or especially relevant to the sociocultural context of trans women’s lives.

Facilitators to PrEP acceptability

Access to a trans-competent PrEP provider.

Being able to obtain PrEP from a trans-competent provider was the most often cited facilitator to PrEP acceptability, and was noted by several participants as a prerequisite to consideration of PrEP use. Furthermore, the possibility of obtaining PrEP from one’s current provider with whom one already has a positive relationship was noted as an ideal scenario to limit the number of medical appointments she would need to manage. Because hormone use requires regular clinic visits, the majority of participants stated that being able to incorporate PrEP-related monitoring into these regular visits would greatly facilitate their willingness to take PrEP. Focus group participants explained that trans women often avoid clinics that are not known to be transinformed, so being able to access PrEP at a clinic that already has a trans-specific programme in place, including hormone provision, would facilitate uptake among those who are not currently connected to care.

Sometimes just to find a doctor that’s trans-friendly and make sure that we’re on our right hormones is hard enough. I think there would be trans women who would be scared [to take PrEP] because its all about finding that right doctor. Having a good relationship with your doctor, I think, is a very good help – a very good healthy thing. [Focus group 2]

Those who had access to culturally competent care for transgender individuals saw few barriers in asking their providers about PrEP. Because they already had an established relationship with their provider, and in many cases saw their provider regularly (as often as once a month), they were more open to the idea of asking for PrEP. One stated,

I would be totally okay. Plus, we’re in a closed room, so it’s not like we’re in some crowded tunnel with just curtains. It’s a private, intimate doctor/patient setting. So I would be totally willing to ask him, because it’s his job. [Participant 6]

Being able to get PrEP from the trans-competent primary care doctors they are already seeing, in a private setting, was a strong facilitator to PrEP acceptability.

Risk perception.

Engagement in sex work, either in the past or currently, was frequently mentioned by our participants and protection during sex work was a primary perceived benefit of PrEP use. Focus group participants discussed how PrEP could empower sex workers to take charge of protecting themselves from HIV, without having to rely on their ability to convince a ‘date’ to wear a condom. In those cases where a date was willing to pay more for sex without a condom and the woman needed the money, participants felt that by taking PrEP they could have a level of protection that was not available to them before.

Some of us, you know, we do sex work on the side, and some us, you know, we’re like, part of that kind of like, marginalized community and we don’t really have that much opportunity to employment. So we end up trying to make a quick buck with sex work and that’s a lot of exposure, and that’s a risk. And I think that’s one of the reasons why I would go for it. [Participant 6]

Low power to negotiate safer sex.

Even outside of sex work encounters, participants described feeling that they have less power to negotiate safer sex due to transphobia and social isolation. Several participants described feeling like trans women do not have as much say over their selection of partners and thus have riskier sex with riskier partners.

When you tell people you’re trans and what this and that means … they don’t want you – they don’t want any thing to do with us. Let alone when we find someone who wants something to do with us, we’re there. It doesn’t matter if it’s right or wrong, it’s just – we’re more willing to go with the wrong person because it’s harder to find someone who will accept us. And that’s why I think [PrEP] would be a good thing to do. [Focus group 2]

This participant reflected on the general sense that, due to transphobia, trans women have limited options in terms of partner selection, later alluding to the fact that gay men are more likely to serosort, but trans women often feel they do not have that option. Another participant later responded that even asking a partner about his HIV status can feel precarious because he may get offended and not want to have sex with her. Furthermore, because trans women are at disproportionate risk for sexual and intimate partner violence, some described not always having control over the sexual encounter due to fear of or actual retaliatory violence.

Other facilitators.

Another particularly powerful perspective came from a participant who reflected on wanting to stay healthy so she will be alive when her family comes around to accepting her.

If it’s a way to maintain or take care of myself, then if I’m sexually active, then taking PrEP is just – its taking care of my body, and it’s knowing that I’m going to live longer, and I’m going to be around for when my family loves me and cares about me and accepts me, and they want to be there for me, and they want to know me for me. They are trying to be open-minded to more. And God forbid, when the day comes, I don’t want to be dead. I want to be known that I’m here. I love you guys, and I’m here. [Focus group 2]

For her, PrEP represents hope for the future in terms of a longer, healthier life so that she can be there to express her love when her family is finally open to getting to know her.

For some participants, the fact that they already took daily medications, namely their hormones, adding PrEP to their routine was described as relatively straightforward as long as PrEP did not interfere with the effect of hormones. ‘I take hormones, so I could probably just take it with that if they’re not going to react in a bad way with the hormones’ [Participant 5].

Barriers to PrEP acceptability

Participants also described a number of barriers that would prevent them from taking PrEP as it is currently being provided, particularly in the San Francisco Bay Area.

Marketing of PrEP is not trans-inclusive.

One of the most prominent barriers was the general perception that PrEP was for gay men, and in particular, white, high socioeconomic status, gay men. In San Francisco, outreach efforts and community education efforts regarding PrEP have been primarily targeted to gay men, which was reflected in our data.

To me, this PrEP thing is a white gay man’s thing, Okay? And it’s for like, the Castro community … It’s for people that have stability and maybe have money. … And you know, some of us [who are trans], we don’t know where we’re going to be tomorrow, or what we’re going to be doing … some of us may not even have a stable place to live, let alone take PrEP. [Focus group 1]

The participant points to the fact that PrEP is seen as a prevention option for those who are stable and have money and a secure future. Many of our participants did not have that sense of security and stability. The lack of trans-specific services, including providing PrEP within a programme that acknowledges their resource-constrained lives, is apparent.

Another participant explained that she has not heard trans women discuss PrEP, and that the potential it has to reduce the risk of contracting HIV make it an essential conversation. In contrast to the silence she observes around PrEP in trans communities, she speculates that PrEP is widely discussed and promoted among gay men. Additionally, the fact that so few of our participants had heard of PrEP despite extensive outreach campaigns in San Francisco supports the notion that trans women are not reached by MSM information sources and social networks.

I would love to see stats on trans involvement [with PrEP] and I would like to see it talked about a little more because trans women, just being trans women, are at risk for HIV, AIDS and STDS. So anything that can detour that risk, definitely needs to be had in broader conversations … and brought to the same plateau as it has been [discussed] in the gay community. Because, I’m pretty sure it’s being talked about like it’s the holy grail over in the gayborhood. But it’s not being talked about over here in Transtasia. [Participant 7]

Another participant worried that the lack of discussion and promotion of PrEP in the trans community was due to a dynamic of gay men wanting to maintain control of HIV-related resources for prevention and treatment. She describes an experience where in the context of a clinic that purports to provide PrEP and other sexual health services to both gay men and trans women, staff still tend to treat her as ‘just another guy.’ She explains how this dynamic leaves her feeling marginalised, disrespected, and disregarded.

I feel like it’s a sort of, ‘we want to keep this for ourselves’ kind of thing. Sometimes there is cattiness between gay men and trans women … specifically because most see us as gay men and most don’t understand that we’re women and most don’t treat us as such … So, I have gone to [clinic in San Francisco that provides PrEP] before for testing and I felt completely uncomfortable because I am the only woman sitting there, the only trans woman sitting there, and yet they see me as just another guy. It’s like, it’s not fair … So, I feel like there’s a certain sense of ‘oh, we want this for ourselves’ or ‘we need it more.’ Maybe on some level they do, but they shouldn’t have a monopoly on HIV meds or HIV prevention because no one deserves to go through this … .Everyone has the right to the same healthcare. [Participant 1]

Concerns about interactions with hormones and prioritisation of hormone therapy.

Perhaps the single most compelling issue that trans women expressed regarding potential uptake of PrEP was the felt need to prioritise their hormone therapy at all costs. Many wondered whether Truvada would interfere with hormone therapy, and many participants stated that if PrEP undermined the effectiveness of their hormone regimens they would immediately stop PrEP. Upon learning more specifics about PrEP, it was common for women to immediately ask, ‘How is it going to interact with HRT? Is it going to harm that in any way? Is it going to disrupt the process?’ [Focus group 5] Another interview participant put it bluntly:

If it stopped my hormone progress, I would be irate because I like to look pretty and pretty is a soft face. And if hormones do not give me that soft face while taking a pill that’s supposed to stop something that condoms do pretty fine just by themselves, then I would probably try to sue … That would definitely make me stop instantaneously. I’d be like [snaps fingers], I am off the pill. [Participant 3]

Managing multiple appointments and medications.

Many participants noted that because they have so many other medical appointments fitting ‘one more in’ would be burdensome. One participant explained that she was tired of being ‘poked and prodded’ at doctor’s offices, due to a great deal of medical monitoring. For these participants, PrEP was less appealing due to the need to submit to yet more medical monitoring.

Because I’m on so much regimens now I think that squeezing in one more doctor’s appointment to take care of my health, would be one more issue that I don’t think I could handle … I’m constantly getting poked and prodded for hormones … I’m beginning to feel like a damn horse at the vet’s office. Look at my teeth, let me count how many years I have, put me out to pasture, and leave me alone! [Focus group 3]

Although many recognised the convenience of adding PrEP to their ‘cocktail’ of pills in the morning, some participants were concerned about the long-term effects of taking and managing multiple pills. This, in conjunction with the need to see the doctor regularly and be monitored for side effects, gave some participants pause.

It sounds like a good idea but the only thing I have is that right now with my hormones and my other meds, I’m taking 13 pills in the morning and 7 at night. And what is that doing to my liver and my other organs? With – I take 22 pills a day. And then, on top of that, it seems like it would be more work … .it seems like it would be more of a hassle. [Participant 4]

Medical mistrust due to transphobia.

Focus group participants noted that many trans women generally avoid medical settings, due to prior experiences of transphobia during interactions with providers, clinic staff, and other patients in waiting rooms. Many reported that personnel in medical settings had been disrespectful and they had experienced transphobic or incompetent treatment, such as being misgendered or being called by one’s legal name instead of their preferred name. Importantly for providers of PrEP, many of our participants had explicit concerns about discussing sexual risk behaviours with doctors.

My poor provider doesn’t know how to handle me, honey. I mean, my poor doctor, I think I break his brain every time I see that man … so any conversations surrounding [sex] ends up with a bit of discomfort on his part. So, I try to figure out, one, how does a man who specializes in helping transwomen not know what these things are, and two when I actually talk about my self advocacy or my self education on these types of things, why doesn’t he really know how to [explore these topics with me]? So, how can you help me with getting beyond this point? It’s a major challenge. [Focus group 5]

Another participant agreed, and suggested that trans women take a more active role in educating themselves about their sexual health and well-being.

I don’t like going to a professional place and then I tell you – you’re my professional doctor and you work with trans people – and then I tell you, well, because I got a dick yeah, I fuck too, when you look at me like I’m crazy … It seems like we have to educate ourselves and each other because half of these doctors, to me, it doesn’t seem like they know what they’re talking about. [Focus group 1]

Even if they do have a trans-friendly care provider, many trans women avoid medical settings because of the transphobia they may encounter from other patients in the waiting room. ‘A lot of trans women do not even have a primary care physician, for whatever reason: stigma, prejudice, the waiting in the waiting room dealing with people staring, all of it’ [Focus group 2].

HIV-related stigma, and its intersection with transphobia.

Some participants were concerned that if someone found out they were taking HIV medications, they would be perceived as being HIV-positive. Many participants felt that HIV stigma is strong within trans communities, especially among those engaged in sex work, and that HIV status is sometimes used against those in the highly competitive and close-knit social environment of sex work.

Within the trans community, I don’t think I would take it upon myself to dish my T that, hey, I’m taking PrEP as a precaution because it may come out to them as, she’s covering up for the fact that she’s finally contracted HIV, and now we get to read her [insult her] and terrorize her. [If] I was taking PrEP, and I, kind of, just wanted to tell somebody, it wouldn’t be anybody in the trans community. That’s for damn sure. And it wouldn’t be anybody in California either. [Focus group 2]

Some participants felt that the combination of transphobia and HIV stigma often results in trans women being perceived as ‘vectors’ [Participant 7] and that having PrEP specifically marketed to them was a way of saying ‘you all have to take these meds so you all don’t keep passing out HIV’ [Participant 7]. Many participants felt that the risk of being perceived as having HIV or engaging in risky sexual behaviour was especially daunting for many trans women, who are often already socially marginalised and isolated. They feared that their friends or family might find out they were taking HIV medications, or that their doctor or even the pharmacist would judge them.

You don’t want to come out every time you get a prescription. And sometimes, being transgender in and of itself is difficult when I am constantly having to identify. Here it’s safe … but out there, I just want to be stealth. Not that I’m ashamed of it, but I don’t want people to know. Because when I say that, they’re like, ‘Oh, I know what’s in your pants’. That’s what it comes down to. So, I think, being trans and having access to that medication kind of go together because we already have a bad rep[utation] when it comes to sex. And it’s like, I don’t want to be seen as a ho … I wouldn’t want to be seen as a whore because I’m picking this up. Not that people who do sex work are bad, but I am talking about the stigmatized version of a whore [and] I don’t want to be seen as that. [Participant 1]

As this participant explains, trans women do not want to have to ‘come out’ every time they go to a pharmacy to pick up medications such as PrEP because of the stigmatised narratives that they feel circulate around trans women and sex work.

Life instability and substance use.

Some women reflected on times in their lives, or in the lives of other trans women they knew, when they did not think they had the stability or the resources to manage the complexity of PrEP use. In terms of housing, only 40% (n = 12) of our participants reported being currently stably housed (see Table 1). When basic life needs such as housing and food were not secure, participants speculated that something like PrEP would not likely be treated as a priority.

Food’s more important right now than something that might take years for it to do something to me. Unfortunately, that’s the reality of the situation for some people … If you’re not HIV positive … there’s really not a lot of resources for you … For me, I have to work my ass off to get on as many housing lists as possible to make my GA [General Assistance] last and to eat, or on top of that to clothe myself or pay a phone bill. [Participant 7]

Due to economic marginalisation and competing priorities, some women did not feel that self-protection would be an adequate incentive to use PrEP because of the cost in terms of money, time, and energy. Some participants felt that PrEP use by trans women should therefore be incentivised.

I also think that transgender women probably would not use it, unless, like she said, there’s an incentive. I mean, how many girls in this room know someone working the street who is not taking care of herself? [Focus group 3]

Participants felt that the women who are engaged in sex work would likely weigh the cost of their time and energy against what they could make on the street.

Participants also explained that keeping regular medical appointments could be difficult for those living in uncertain circumstances. Many women had unstable housing and were concerned about making ends meet, which took precedence over keeping medical appointments.

They don’t have time to go to the doctor … because it’s taking away from time that they could be using trying to catch a date … You know, they don’t have time for the doctor because they’re worried about paying for their, you know, their hotel room for the night. So, the doctor is not an option. [Focus group 2]

For others, there were concerns about substance use and how addiction might interfere with their ability to take PrEP daily and maintain the regimen that would make it effective.

Our participants were quite thoughtful regarding integrating PrEP into their complex lives and offered many insights and suggestions for overcoming some of the barriers that they and other women like them might experience in accessing this innovative HIV prevention modality.

Discussion

This study demonstrates the importance of the unique sociocultural context of trans women’s lives when considering how PrEP might best be marketed to them as a tool for HIV prevention. Even in San Francisco, where the largest PrEP clinic in the world is located, where HIV prevention services are abundant, and where one of the first PrEP demonstration clinics was located, very few of the trans women we interviewed had ever heard of PrEP. This finding clearly demonstrates how disseminating information through MSM sources and networks does not reach trans women. Our findings support the notion that the behavioural risk group ‘MSM’ implies a homogeneity that does not exist among this group. Thinking solely in behavioural terms causes us to ignore social networks and communities that are important sources of information, norms, and values, and that provide resources for health promotion strategies.

Our participants cited multiple trans-specific barriers and facilitators to PrEP acceptability, including uptake and adherence, which have not previously been elucidated in observational studies that have aggregated them with MSM. For example, trans women who are engaged in sex work may view PrEP as an empowering tool to increase their control over HIV prevention in their lives. Because sex work is more prevalent in the lives of trans women due to social and economic marginalisation, efforts to roll out PrEP to trans women may benefit from incorporating messaging about HIV prevention during sex work. Overall, our participants felt it is vitally important that PrEP messaging and information be delivered via trans-specific networks with trans women’s unique concerns and life contexts in mind. Community-based strategies such as community mobilisation to increase knowledge and trust of information about PrEP among trans women should be explored.

Furthermore, trans women do not benefit from programming and services that are designed for MSM or offered through clinics that primarily serve MSM. Our participants, like most trans women, did not feel comfortable accessing programmes and services designed for men (Bauer et al., 2009). Accessing services for men, being treated as a man, and not having one’s own unique issues addressed during health care, can feel extremely alienating and even humiliating for trans women (Sevelius, Patouhas, Keatley, & Johnson, 2014; Sevelius, Carrico, & Johnson, 2010). Trans women, their advocates, and public health researchers have issued a strong call for the disaggregation of trans women from MSM (Baral et al., 2013; Poteat et al., 2014; Santos et al., 2014), as the importance of incorporating gender-affirming practices in addressing HIV among transgender women is becoming increasingly recognised (Sevelius, 2013; Sevelius, Patouhas, et al., 2014).

Our participants identified the difficulty in and importance of finding trans-competent providers as a powerful facilitator to increasing the acceptability of PrEP. In the rollout of PrEP to trans women, it is essential that we identify and/or train health care providers who are comfortable and competent in providing health care to trans women, including hormone provision. While there is no evidence to suggest that PrEP interacts with commonly used feminising hormone regimens, and evidence from studies of antiretroviral interactions with hormonal contraceptives have been reassuring (Whiteman et al., 2015), no direct study of these interactions has been conducted to date with trans women. Providers and clinics that serve MSM are not necessarily equipped to recruit, retain, and provide care to trans women. Guidelines developed for the implementation of PrEP need to consider trans women’s unique barriers and facilitators to uptake, especially the prioritisation of hormone use and engagement in sex work. Multi-modal interventions are recommended for uptake and adherence support, but should consider culturally unique barriers to adherence to maximise effectiveness with trans women (Marcus et al., 2014; Sevelius, Saberi, & Johnson, 2014). There are opportunities to leverage unique facilitators for uptake among trans women that to date have not previously been recognised or utilised to augment HIV prevention efforts among this highly vulnerable group. Furthermore, many of the guidelines cited in these documents are not applicable to trans women’s lives. Risk assessment tools, adherence support, and retention strategies are being developed without consideration of trans women’s unique issues and are not validated for use with trans women (Marcus et al., 2014).

In addition to the development of trans-specific services, the possibility of offering PrEP and other HIV prevention services to trans women through non-transgender women’s clinics and providers needs to be explored. Trans women are women first and foremost, and share more in common with non-transgender women than they do with men in terms of contextually situated psychosocial drivers of HIV risk. These drivers include experiences of trauma, domestic and sexual violence, misogyny, survival sex work, sexual objectification, and unequal power in relationships to negotiate safer sex (Coe et al., 2012; Grant et al., 2011; Machtinger, Haberer, Wilson, & Weiss, 2012; Sevelius, Patouhas, et al., 2014). The effect of these drivers on uptake and adherence to PrEP must be explored in the context of PrEP demonstration projects that are truly inclusive of and/or marketed specifically to trans women. Many women-focused HIV prevention services have sought to be more trans-inclusive, but there are currently no data or guidance available. While trans-specific services are important to continue to develop, it is also critical to develop effective programming for trans women within existing programmes. Many regions of the world do not have the resources nor the number of trans women to justify funding and developing separate trans-specific programming, but need to know how to effectively serve trans women as risk for acquiring HIV in their communities. Similarly, there is anecdotal evidence that some trans men who have sex with men (‘TMSM’) are interested in PrEP for HIV prevention, but the gaps in knowledge about HIV risk and prevention needs for TMSM are arguably even greater than those for trans women.

This study represents a convenience sample of trans women in San Francisco at risk for HIV acquisition and the results may only be generalisable to similar urban contexts within the USA. However, these findings clearly indicate that public health efforts cannot adequately address the HIV epidemic among trans women as long as they remain aggregated, and thus invisible, under the MSM behavioural risk category in HIV prevention research and programming.