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. Author manuscript; available in PMC: 2022 Feb 1.
Published in final edited form as: AIDS Care. 2020 May 23;33(2):244–252. doi: 10.1080/09540121.2020.1769835

Barriers and Motivators to Pre-Exposure Prophylaxis Uptake among Black and Latina Transgender Women in Los Angeles: Perspectives of Current PrEP users

Omar Nieto a,*, Anne E Fehrenbacher b,c, Alejandra Cabral a,d, Amanda Landrian a,d, Ronald A Brooks a,b
PMCID: PMC7680715  NIHMSID: NIHMS1610501  PMID: 32449399

Abstract

The purpose of this qualitative study was to identify barriers and motivators to PrEP uptake from the perspective of Black and Latina transgender women (TW) who are currently using PrEP to suggest intervention and outreach activities to increase PrEP uptake in this population. The Information-Motivation-Behavioral Skills Model guided the development of the semi-structured interview guide. A thematic analysis approach was used to analyze the data. Perceived barriers to PrEP uptake included structural and logistic barriers, language and cultural barriers to medical engagement, lack of transgender competent or gender-affirming care, and prioritizing hormone therapy over the use of PrEP. To increase PrEP uptake among BLTW, participants recommended disseminating PrEP information through a variety of methods, highlighting relationship and sexual health benefits of using PrEP, and developing effective patient-provider communication. Our findings highlight several ways to promote PrEP among BLTW. PrEP promotion should be integrated into gender-affirming care and supported by peer education and navigation services that reach BLTW in both clinic and community settings.

Keywords: Black, African American, Latina, Transgender Women, Pre-Exposure Prophylaxis

INTRODUCTION

Transgender women (TW) are disproportionately affected by HIV in the United States (US). A transgender woman is a person assigned male sex at birth who identifies as a woman (Coleman et al., 2012; Deutsch, 2016). Although TW are underrepresented in national HIV surveillance data, HIV prevalence is estimated to be between 22–28% among TW (Baral et al., 2013; Centers for Disease Control and Prevention [CDC], 2019; Herbst et al., 2008). In addition, TW of color are at an elevated risk for HIV compared to their White peers. Between 2009–2014, the Centers for Disease Control and Prevention (CDC) reported that 51% of all HIV diagnoses among TW were among Black women, 29% among Latina women, and 11% among White women (CDC, 2019). As a result of the high HIV prevalence among BLTW, there is an urgent need to expand bio-behavioral HIV prevention efforts to this population.

Pre-exposure prophylaxis (PrEP) is an oral medication that is 99% effective at preventing HIV transmission when taken daily, and only marginally less effective when taken at least four times per week (Buchbinder, 2018; Spinner et al., 2016). A retrospective analysis of the iPrEx clinical trial revealed that there were no HIV infections among TW who had PrEP blood concentration levels indicating adherence to the minimum recommended dosing of four pills per week (Deutsch, 2018). However, the overall adherence to PrEP among TW in the study was lower than adherence among men who have sex with men (MSM) (Escudero et al., 2015; Grant et al., 2014; Marshall & Mimiaga, 2015).

Despite the benefits of PrEP use, less than 1% of PrEP prescriptions filled nationally have been by TW (CDC, 2019; Grant et al., 2014). It is necessary to understand and address the causes of their low PrEP uptake and adherence. Previous studies have identified factors that may impact PrEP use among TW, including structural barriers that discourage initiation and impede adherence, such as high rates of homelessness, incarceration, unemployment, lack of insurance or a usual source of care, discrimination, and lack of access to gender-affirming care (Herbst et al., 2008; Poteat et al., 2015; Reback et al., 2018). Individual and social factors that limit PrEP uptake among TW include a lack of knowledge about the medication or where to access it, lack of social support and reinforcement for PrEP use, stigma related to PrEP use, and concerns about side effects, especially among TW taking hormones (Brooks et al., 2019; Deutsch, 2018; Rael et al., 2018; Sevelius et al., 2016; Wood et al., 2017). However, very few of these studies were successful at recruiting TW who were currently using PrEP and were often limited in their exploration of barriers and facilitators to PrEP use specifically for Black and Latina TW (Carvalho et al., 2019). As such, BLTW who have been able to successfully initiate and maintain a PrEP prescription may offer valuable insight regarding the unique challenges to and recommendations for increasing PrEP use to this highly vulnerable population.

Efforts to increase PrEP uptake among TW have been designed according to theoretical frameworks such as the Information-Motivation-Behavioral Skills (IMB) model (Dubov et al., 2018; Walsh, 2019). The IMB model asserts that at-risk groups who are well-informed about PrEP, motivated to use that knowledge, and develop behavioral skills to enable PrEP use will have a higher likelihood of uptake and adherence to the medication (Dubov et al., 2018; Walsh, 2019). The IMB model provides a framework for developing effective PrEP interventions to reduce the incidence of HIV among TW. The present study used the IMB model to identify the requisite information, motivating factors, and behavioral skills that Black and Latina TW (BLTW) PrEP users believe are necessary to facilitate PrEP adoption and continuation among other BLTW.

METHODS

Between October 2017 and November 2018, BLTW PrEP users were purposively sampled to complete an in-depth, semi-structured qualitative interview regarding their experiences and perspectives using PrEP. Recruitment included outreach at transgender community events and participant or agency referrals. Individuals met eligibility requirements if they were 18 years of age or older, Black/African-American or Latina/Hispanic, self-identified as a transgender woman, had sex with cisgender men within the past six months, currently prescribed and taking PrEP for at least one month, and resided in Los Angeles County. Eligible participants received a $50 gift card (VISA or Target) for successfully completing the interview. Study recruitment was ended once data saturation was reached (i.e., no new information was gleaned from interviews). The Institutional Review Board of the University of California, Los Angeles approved all study materials.

Participants were asked to describe: (1) challenges they faced in trying to access PrEP; (2) challenges that may prevent other BLTW from accessing PrEP; (3) information BLTW need to know about PrEP before they decide it is right for them and the best methods for disseminating that information; (4) motivators BLTW to use PrEP; and (5) how to effectively communicate with medical providers regarding BLTW’s sexual behaviors. In order to maintain confidentiality, each participant was assigned a unique identification number and completed their interview in a private room at a community-based, university-affiliated clinic. Interviews were conducted in English, audio-recorded, and lasted approximately 60–90 minutes. Two research staff members transcribed verbatim and checked all interviews for accuracy. A self-administered Audio Computer-Assisted Self-Interview (ACASI) was used to collect participant demographic information, PrEP use characteristics, and sexual behaviors.

Data Analysis

Transcripts were iteratively coded and analyzed to determine barriers to and motivators for PrEP uptake among BLTW. A codebook was developed from the interview guide, interviewer field notes, and multiple readings of the transcripts. Two research staff members used a subset of codes to conduct a test for inter-coder reliability with two randomly selected transcripts (Cohen’s kappa coefficient, k = 0.87). Final codes were entered into ATLAS.ti (version 8.3.20.0) and attached to their associated quotations. A thematic analysis approach guided by the IMB model was then used for analyzing all qualitative data (Braun & Clarke, 2006). The study team reviewed all coded data extracts to identify major themes, which were selected based on their frequency across the dataset or the depth of the related discussion.

RESULTS

Table 1 provides an overview of the demographic, PrEP use characteristics, and sexual behaviors of the sample. In total, 18 BLTW participated in the study, of which 9 identified as Black and 9 identified as Latina. The median age was 32 years old (range = 21–50). The majority identified as straight/heterosexual (66.7%), did not have a college degree (61.1%), had health insurance (83.3%), and had an annual household income of less than $10,000 (61.1%). The mean duration on PrEP was 6.5 months (SD = 10.1; median = 2.5, range = 1–44.0) and three-quarters (72.2%) described their adherence as either “very good” or “excellent.” Approximately half (44%) reported having an exchange sex partner in the past six months, with the majority reporting condom use during receptive and insertive anal sex.

Table 1.

Demographic and PrEP Use Characteristics among Black and Latina Transgender Women PrEP Users (N=18)

Variable N (%) or M, SD
Demographic Characteristics
Age (in years) M=31.67, SD=10.36
Racial/Ethnic Identity
 Black/African-American 9 (50.0)
 Hispanic/Latina 9 (50.0)
Sexual orientation
 Straight or heterosexual 12 (66.7)
 Gay/homosexual/queer/same gender loving 4 (22.2)
 Bisexual 2 (11.1)
Highest level of education completed
 Less than high school degree 4 (22.2)
 High school graduate or received GED 7 (38.9)
 Some college or more 7 (38.9)
Employment status
 Working full or part-time 7 (36.8)
 On permanent disability 2 (11.1)
 Unemployed 9 (50.0)
Annual income
 $0–9,999 11 (61.1)
 $10,000 or more 7 (38.9)
Health insurance
 Medi-Cal/Medicaid or Medicare 11 (61.1)
 Private or employer-provided insurance 4 (22.2)
 Does not have health insurance 3 (16.7)
PrEP Use Characteristics
Length of time using PrEP (in months) M=6.46, SD=10.06
Adherence to PrEP medication past month1
 Fair 1 (5.6)
 Good 4 (22.2)
 Very good 6 (33.3)
 Excellent 7 (38.9)
Sexual Behaviors
Number of Main2 male sex partners past 6 mos. (N=10) M=3.1, SD=2.6
Number of times receptive anal (RA) sex past 6 mos. (N=10) M=27.4, SD=36.6
Last RA sex encounter condoms used
 Yes 6 (60.0)
 No 4 (40.0)
Number of times insertive anal (IA) sex past 6 mos. (N=10) M=6.6, SD=11.2
Last IA sex encounter condoms used (N=5)3
 Yes 4 (80.0)
 No 1 (20.0)
Number of Casual4 male sex partners past 6 mos. (N=13) M=11.9, SD=13.2
Number of times receptive anal (RA) sex past 6 mos. (N=13) M=14.2, SD=13.9
Last RA sex encounter condoms used (N=12)3
 Yes 9 (75.0)
 No 3 (25.0)
Number of times insertive anal (IA) sex past 6 mos. (N=13) M=4.7, SD=6.2
Last IA sex encounter condoms used (N=10)3
 Yes 6 (60.0)
 No 4 (40.0)
Number of Exchange5 male sex partners past 6 mos. (N=8) M=18.6, SD=12.3
Number of times receptive anal (RA) sex past 6 mos. (N=8) M=11.3, SD=6.7
Last RA sex encounter condoms used
 Yes 6 (62.5)
 No 3 (37.5)
Number of times insertive anal (IA) sex past 6 mos. (N=8) M=6.9, SD=6.7
Last IA sex encounter condoms used (N=6)3
 Yes 4 (66.7)
 No 2 (33.3)
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1

PrEP adherence was measured via self-report using a single-item validated Likert scale (Feldman et al., 2013)

2

Main partner refers to someone with whom the participant has a close, ongoing, intimate relationship with.

3

Excludes participants who indicated never using a condom in the past 6 months.

4

Casual partner refers to someone with whom the participant has sex with, but do not consider a main or steady partner.

5

Exchange partner refers to someone with whom the participant has sex with in exchange for things they need such as money, drugs, shelter, or food, and who are not considered main or casual partners.

Very few participants reported personal barriers to PrEP access. These barriers included a lack of PrEP competency among primary care physicians, long wait times to be seen to receive/re-fill the prescription, and failure to meet deadlines for insurance renewal. The following results are structured according to the anticipated barriers, information, motivating factors, and behavioral skills needed to ensure PrEP uptake and continuation with other BLTW.

Barriers to PrEP Uptake

Language and Cultural Barriers to Medical Engagement

Participants reported that BLTW experience cultural barriers to engaging with the health care system. For example, Spanish-speaking Latina TW with limited English language proficiency may experience difficulty or embarrassment trying to communicate with and understand non-Spanish-speaking providers (Table 2, Quote 1). As a result, Latina TW may not fully comprehend the processes involved in starting and staying on PrEP. For those who are undocumented, there is an additional fear of potential deportation should they attempt to access the medication (Quote 1). In contrast, Black TW may choose not to initiate PrEP because of their mistrust of the medical community stemming from the historic exploitation of Black people by medical professionals and researchers (Quote 2). This lack of engagement around PrEP may also be influenced by a prevailing belief in communities of color that HIV/AIDS is a “gay man’s disease” or “White person’s problem” (Quote 2).

Table 2:

Barriers to PrEP Uptake

Language and Cultural Barriers to Medical Engagement
  • 1

    I think having to go speak to a physician or doctor just to get [PrEP] who probably, in most cases, are White – I think that scares them… I’ve met a lot of trans Latina women who, yeah, their English isn’t completely on point, and I feel like that embarrassment gets to them in regards to not wanting to go to a facility to get prescribed something. I think there’s a lot of underlining fears that go behind that: not being able to read the application form, not being able to understand the full question, walking into a facility and having a lot of medical professionals judge you based off your appearance… It might be deportation or [a fear of being] treated horribly or to be assaulted. (Latina, age 21, 44 months on PrEP)

  • 2

    I just believe that people are a little fearful from past experiences of being used. Black people, at one point, were used as experiment projects like Tuskegee… Black people are afraid and still a lot of Black communities see AIDS and HIV as a gay man’s disease, because it was gay men that we know, initially, in America and here in Los Angeles that had contracted the virus. So people are always still kind of seeing it as a White person’s problem. (Black, age 48, 2.5 months on PrEP)

Lack of Transgender Competent Medical Care
  • 3

    Doctors need to be more educated on not only PrEP, but trans people, period. I was so pleased with my doctor being so aware of me and my body, and being able to tell me what I needed to do and what tests I needed to take for my body – my trans body – and not giving me some rigmarole about a man. And that helped me in my experience. Does every trans person get that type of knowledge in their medical appointments? I don’t know… I think so many of them in their transitions aren’t in a space of comfort where they are able to be in situations and deal with what they might receive at the doctor’s office from the security, to the front desk clerk, to the people in the waiting room. (Black, age 48, 6 months on PrEP)

  • 4

    I feel like a lot of the providers that are prescribing hormones should be more of an advocate about PrEP… Because as their provider, you should have the comfort to talk about their sexual history. As long as you know they’re sexually active with [someone] assigned male at birth, that should already be on your radar and maybe just bring it up just in case they might want to get on it. (Latina, age 27, 2 months on PrEP)

Prioritization of Hormones over PrEP
  • 5

    I found that some Latina trans women are Latina trans women without that medication. And they’re like, ‘I don’t need the hormones, but I need my PrEP.’ And I’ve also met other Latina trans women, especially in the modeling industry, where they’re like, ‘I don’t need PrEP. I just need my hormones and I’m fine.’ So it goes both ways; it just depends on what you value more. (Latina, age 21, 44 months on PrEP)

  • 6

    The Black trannies that I know are just all over the place. They have no priorities or focus. I don’t even think they go see a doctor for their pills. They buy it off the streets. I don’t know why they don’t go to see a doctor since it’s free. So all this street shit… It’s not a priority for them. It’s more like, ‘I want a bigger ass and I want a thigh gap.’ But none of them are concerned about internal health – it’s more outer. (Black, age 31, 2 months on PrEP)
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Lack of Transgender Competent Medical Care

Participants described a pressing need to improve trans competency among medical providers to help support BLTW access PrEP (Quote 3). BLTW in early stages of transition might also be discouraged from accessing PrEP because of the judgment they experience at multiple levels of medical visits (Quote 3). For these reasons, participants suggest that providers who prescribe hormone therapy or who assist with gender-affirming care should include PrEP as part of their regular provision of care (Quote 4).

Prioritizing Hormones vs. PrEP

According to participants, some TW place greater value in the use of feminizing hormones to affirm their gender than the use of PrEP for HIV prevention (Quote 5). In contrast, there are TW for whom PrEP is of primary importance for their well-being, irrespective of hormone use (Quote 5). BLTW who primarily access hormones through informal channels (i.e., “street hormones”) might also have difficulties engaging with a medical provider to access PrEP in formal medical institutions (Quote 6).

Information for PrEP Uptake

Disseminating Accurate Information about PrEP

In order to facilitate PrEP uptake among BLTW, participants spoke first of the need to disseminate accurate information about PrEP to this population. This includes knowing that PrEP will only protect against HIV infection and is best used in combination with other HIV prevention methods, such as condoms, to mitigate the risk of acquiring other sexually transmitted infections (STIs) (Table 3, Quote 1). They also emphasized a need to alleviate fears that some TW have about side effects of using PrEP. In this respect, participants stressed that BLTW need to understand the potential of experiencing side effects, which are typically minimal and subside quickly (Quote 2). Equally important was recognizing that the benefits of PrEP use outweigh the side effects that may occur (Quote 2).

Table 3:

Information for PrEP Uptake

Disseminating Accurate PrEP Information
  • 1

    I feel like it will keep you safe from HIV, but it won’t keep you safe from everything else. So I think always understanding that is definitely important. Because I also think that misinformation is something that could happen a lot… It’s not a miracle drug; it’s not going to solve all your problems. (Latina, age 21, 44 months on PrEP)

  • 2

    Of course with any drug, there’s side effects, but you have to educate people in a way that it’s presented to them that even though there are side effects, the benefits outweigh those. (Black, age 27, 0.75 months PrEP)

Disseminating PrEP Information through Multiple Methods
  • 3

    I feel like there’s still not enough information out there in all areas for PrEP. Because I come on this side of town and you see stuff, but over in the hood where I live, they’re not getting that information. So I think there needs to be areas that are strategically picked to kind of penetrate that information in, so that way, they can saturate it and get it and be more mindful of it. (Black, age 48, 6 months on PrEP)

  • 4

    Meet them where they’re at. If they’re on the boulevard [sex work stroll], get someone out there with PrEP information and have that conversation wherever and however you can do it. Do some party or fashion show and invite them, and allow them to be centered and feel glamorous. But at the same time, educated and informed. (Black, age 48, 2.5 months on PrEP)

  • 5

    A lot of Black trannies are homeless, on the street, drug addicts, prostitutes or whatever – not all of them, but a majority of them. The only places that I can see that they really would have a chance of getting the information… would probably just be places like this [research clinics] because a lot of them do studies and go to clinics and stuff like that even if they choose to or not to take the medication or whatever. (Black, age 45, 2 months on PrEP)
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Disseminating PrEP Information through Multiple Methods

Participants recommended using a variety of methods for disseminating PrEP information to BLTW, including traditional forms of marketing and print media such as billboards, flyers, and advertisements on bus stops; language-specific and culturally tailored commercials featuring peers; and online forums where BLTW are able to have frank discussions about their sexual behaviors. However, participants expressed concern that information about PrEP might not reach BLTW who experience multiple intersecting structural and social vulnerabilities (e.g., the need to engage in sex work, poverty, lack of access to healthcare, low health literacy, and language barriers). To bridge this gap, participants suggested expanding PrEP marketing campaigns into neighborhoods outside of queer enclaves, such as West Hollywood, that primarily cater to White gay men (Quote 3). This could also include outreach in public spaces that and strolls that BLTW frequent when engaging in sex work and events targeting BLTW (Quote 4). Community agencies and clinics were also highlighted as important venues for disseminating PrEP information, as BLTW are likely to visit these spaces to access other critical services or to participate in research studies (Quotes 5).

Motivation for PrEP Uptake

The Role of Peer Education

In discussing what would motivate BLTW to start PrEP, participants spoke about the importance of connecting with peer educators within transgender communities. This means working with peer educators who share both the individual’s gender and racial/ethnic identity, language, and who have shared experiences of sex work (Table 4, Quotes 1–3).

Table 4:

Motivation for PrEP Uptake

The Role of Peer Education
  • 1

    You should have people who are Black and they’re trans speaking to Black, trans, because it’s easier when you have someone who is like you. Because when you have people who go to school and get a degree and they try to tell you about your life or how you’re living, you don’t receive it the same way. (Black, age 29, 7.5 months on PrEP)

  • 2

    I think we have to have a lot more Latino people out here being spokespeople for PrEP. We can’t have Becky from Michigan who took a Spanish course for four years, you know? […] I’m not disqualifying that individual, and I’m not saying their Spanish isn’t up to par. I’m just saying that’s just not the same… That’s not the person that we need speaking for us. Like, we need an actual person who knows what it’s like to be Mexican, who knows what it’s like to speak Spanish. (Latina, age 21, 44 months on PrEP)

  • 3

    You believe in a person like myself that’s been out there and has done sex work and isn’t employed… Because the person at [trans-specific community agency], she told me about it. She’s like, ‘Well, I’m taking it.’ So that kind of turned on a lightbulb because she had my life style before and now she has a job. She doesn’t do what she has to do for money. That turned me like, ‘Okay, maybe I’ll try.’ (Latina, age 50, 1 month on PrEP)

Personal Testimonials from other Trans PrEP Users
  • 4

    It’s going to take more of us to get out here and be faces. It’s going to take more of us to be seen in some of these campaigns that are being featured. They’re going to have to connect with people that they know in order to make them see it as a benefit for them. (Black, age 48, 6 months on PrEP)

  • 5

    With trans girls, you go to your friends for everything: you go to them for hormones or you go to them not just to get [hormones], but for advice. Like, ‘Gurl, what are you on? Where do you get this? For surgeries, where did you get that?’ […] Being on PrEP, it would be another thing they could talk to them about like, ‘Gurl, where do you get it? How did you feel? What are the side effects?’ (Latina, age 27, 2 months on PrEP)

Relationship and Sexual Health Benefits Associated with PrEP Use
  • 6

    I think it’s really important to be on PrEP because a lot of us, like I said, you either have people that you’ve had sex with or like myself a partner that told me he was not positive and then ended up being positive… So better yet just prevent it. Just take care of yourself. You can only trust one person: it’s yourself. (Latina, age 50, 1 month on PrEP)

  • 7

    You could still be with your main partner and still have unprotected sex and not think that you’re going to catch anything. And most of the transgender women that have become HIV-positive, it’s not because of their clients – it’s because of their main partner. (Latina, age 42, 6 months on PrEP)

  • 8

    I’ll be a fool not to [take PrEP]. I’m sexually active and with being a Black trans femme person – the dating pool or the people that I’m sleeping with is very small. And being negative, I’m at high risk because I was told that over 50% of trans women in Los Angeles, alone, are HIV-positive. So at some point, we’re going to be sleeping with the same person whether I know it or not because the dating pool is so small and nobody’s committed to anybody. (Black, age 48, 2.5 months on PrEP)

Benefits to Sex Workers
  • 9

    Some guys like to slip and take the condom off. And some guys will force you to – this is why I don’t have sex with anonymous people – they will force you to [have sex without a condom], especially if you’re at their home and they say all these nice things… They would try to force you to have sex – they may potentially even fight you if you don’t let them have sex without the condom because they think it feels better without the condom, and you will have to worry for 6 months if you might have HIV or be at risk. So I think PrEP is the best solution to prevent you from getting the infection at all. (Black, age 29, 2 months on PrEP)

  • 10

    A lot of my girls are into sex work. They make more money without the condom than with condoms. So for them, it’s really like, ‘Yes, it’s for you. You need to be on it so that way you can be protecting yourself because it’ not like sex work is all that we can do now.’ And I don’t want to take anything away from anyone who does sex work – they got to make their money too – but if you’re going to be out there making your money, at least make it in a way that you can sleep good at night and know that you have some form of protection in your body against these people that you know nothing about. (Black, age 48, 6 months on PrEP)
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Personal Testimonials from other Transgender PrEP Users

Another strategy for motivating potential consumers is the use of personal testimonials from other BLTW who are already using PrEP. In addition, participants stressed that BLTW should be “the face” of PrEP marketing campaigns and advertisements targeting this population (Quote 4). Participants recognized that BLTW might want to communicate with other transgender peers in their social networks for advice and encouragement regarding PrEP, much in the same way they do regarding use of hormones (Quote 5).

Relationship and Sexual Health Benefits Associated with PrEP Use

Additionally, participants highlighted other relationship and sexual health benefits of PrEP use. For example, PrEP allows users to remain protected from HIV even with sex partners who are unaware of their HIV-positive status or in the event of infidelity (Quotes 6–7). In this respect, participants acknowledged that PrEP is useful in preventing HIV transmission not only from sex work clients but also from main partners (Quote 7). The limited dating pool perceived to be available to BLTW and the high HIV prevalence within their sexual networks were also cited as important motivators for initiating PrEP (Quote 8). With regard to sex work, PrEP use may mitigate the potential for client violence in situations where TW are unable to negotiate condom use or when they choose to engage in condomless sex for more money (Quote 9). This might allow PrEP users to have a greater sense of control over their sexual health without relying on a client to take precautions to protect them from HIV infection (Quote 9–10).

Behavioral Skills for PrEP Adoption and Continuation

Developing Effective Patient-Provider Communication

Participants discussed the need for BLTW to develop skills and self-efficacy in communicating with medical providers about their sexual risk behaviors. This would allow providers to accurately assess the individual’s level of HIV risk and ensure that they are connected to PrEP services if needed (Table 5, Quote 1). However, BLTW may be hesitant to have an honest dialogue about their sexual behaviors because they fear that the provider will restrict their access to hormones (Quote 2). To address these fears, participants recommended that BLTW seek out providers that are capable of addressing their unique health needs as TW (Quote 2).

Table 5:

Behavioral Skills for PrEP Adoption & Continuation

Developing Effective Patient-Provider Communication

  1. The doctors will be like, ‘You sound like you’re a perfect candidate for PrEP. So by you telling me that you have this many people you have sex with – not only do you have casuals, but you have a main, you might have anonymous, and you also have exchange – you’re very high risk for contracting HIV.’ (Latina, age 42, 6 months on PrEP)

  2. Be honest with the doctors and go to doctors that do care for us, because there is a lot of doctors that do care for us… Because a lot of us are ashamed to say that we were on drugs or that we are on drugs, because they’ll believe, in their heads, ‘Well, if I tell the doctor, he’s going to take me off the hormones.’ They don’t. They encourage you to take it because of what you’re doing. (Latina, age 50, 1 month on PrEP)
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DISCUSSION

This study sought to identify barriers and motivators to PrEP uptake among BLTW by learning from the unique perspectives of BLTW PrEP users. While the barriers discussed may be similar to those reported by Black and Latino MSM population (Brooks et al., 2011; Lelutiu-Weinberger & Golub, 2016), they are often amplified for BLTW due to severe economic and social marginalization, overlapping syndemic risks (e.g., drug use, mental illness, homelessness), and their experiences with intersecting stigmas related to their gender identity and race/ethnicity (Klein, 2018). For example, our findings indicate that monolingual Spanish-speaking Latina TW may experience a barrier to effectively communicating with non-Spanish-speaking PrEP providers who may not understand their experiences as a Latina transgender woman or an immigrant. The findings also revealed that BLTW do not see themselves reflected in current HIV prevention narratives and may therefore choose not to initiate PrEP, due in part to the perception that PrEP is an option exclusively for white cisgender gay men. This suggests a need for medical providers and PrEP promotional campaigns to deliver PrEP in a way that is both culturally tailored to BLTW populations and language specific. Efforts are also needed to work with Latina TW to increase their PrEP literacy, particularly among those whose primary barriers to medical engagement are related to language or undocumented status.

BLTW are less likely to engage with medical care because of fears of stigmatization, discrimination, and a lack of gender-affirming providers sensitive to their unique needs as a transgender woman (Deutsch, 2018; Eaton et al., 2017). As noted in the present study, BLTW might opt for nondisclosure of their sexual behaviors, particularly related to sex work, to medical providers in order to avoid potential interruption to their hormone regimen. It is imperative that medical staff understand the unique social and contextual forces shaping the lives of BLTW in order to provide the necessary support for their PrEP use without jeopardizing their care or use of other services. These findings reinforce existing literature that suggest the need to integrate PrEP into gender-affirming care (Deutsch, 2018; Eaton et al., 2017; Grant et al., 2016), especially linking hormone prescriptions with PrEP options. For many TW, seeking gender-affirming services is a main point of entry into care (Deutsch, 2018; Deutsch et al., 2015; Eaton et al., 2017). Efforts to increase PrEP uptake in this population should consider joining the two. BLTW may also require additional support in developing effective communication with medical providers around their sexual behaviors. Because it is necessary for BLTW to communicate openly with doctors to initiate PrEP, this was the only behavioral skill participants in this study were queried about.

The factors that participants identified to increase PrEP uptake among BLTW were often framed within contexts of sex work. In particular, PrEP use was viewed as a necessary resource when engaging with clients who place a premium on condomless sex, to avoid instances of violence, and because of the limited options of sexual partners available to TW (Sevelius et al., 2016). As such, these findings suggest that PrEP has the potential to reduce experiences of harm among BLTW when they are negotiating condom use with partners and clients, which can empower BLTW to have greater control over their sexual health.

Finally, our findings suggest that BLTW PrEP users can play a key role in helping to disseminate information and provide peer education about PrEP to other potential BLTW consumers. Peer education should occur across a variety of settings, including informal contexts such as an individual’s home, on the streets with peers who are engaged in sex work, and at transgender-specific community agencies with PrEP navigators who are also using PrEP. In addition, PrEP promotional campaigns aimed at BLTW should feature PrEP users who reflect the population’s gender, race/ethnicity, language, and experiences of sex work. These dissemination activities may help normalize the use of PrEP and place it within the context of the unique identities and lives of BLTW. Thus, our findings add further support to the use of peer education models in disseminating information about PrEP in transgender communities and other high-risk populations (Golub et al., 2019; Kuhns et al., 2017; Lelutiu-Weinberger & Golub, 2016).

LIMITATIONS

These results should be interpreted within the context of the study limitations. This study included a convenience sample of BLTW PrEP users in Los Angeles, who might not reflect the experiences of PrEP users in other settings. The sample consisted exclusively of English-speaking BLTW and might not be generalizable to monolingual Spanish-speaking TW. However, the findings offer an array of perspectives from BLTW using PrEP, who are underrepresented in HIV prevention research.

CONCLUSION

BLTW face a variety of challenges in using PrEP. Our findings provide insights to help develop PrEP interventions tailored for BLTW based on the barriers, information, motivating factors, and behavioral skills identified by BLTW who are current PrEP users. In general, BLTW recognize the benefits of PrEP in helping them have control over their sexual health, especially among sex workers. Nevertheless, they experience a myriad of challenges that limit uptake, largely due to a lack of culturally appropriate and gender-affirming care. Future studies should test peer education and navigation approaches to improve PrEP uptake among BLTW, services that integrate the provision of PrEP with hormones, and communication and outreach strategies that include BLTW in PrEP marketing materials.

ACKNOWLEDGMENTS

We thank the participants for graciously sharing their views and experiences for this study.

FUNDING INFORMATION

This work was supported by the California Community Foundation under Grant # BA-17-136260 and the National Institute of Mental Health under Grant # R21MH107339, T32MH109205, and P30MH058107. Additional support was provided to the second author by NIH’s Fogarty International Center through a grant to the University of California Global Health Institute under Grant # D43TW009343. The content is solely the responsibility of the authors and does not necessarily reflect the official views of the National Institutes of Health or any of the other funding sources.

Footnotes

DISCLOSURE STATEMENT

The authors disclose that no competing financial interests exist.

ETHICAL APPROVAL

The Institutional Review Board of the University of California, Los Angeles approved all study materials. All study procedures involving human participants were performed in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all human participants prior to the initiation of study procedures.

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