PrEP and PEP: awareness, use, and preferences among Latina immigrant transgender women in the Washington DC metropolitan area

Abstract

Latina immigrant transgender women are disproportionately affected by the HIV epidemic in the United States yet are rarely the focus of HIV-prevention research. This longitudinal concurrent mixed-methods study examined pre- and post-exposure prophylaxis (PrEP and PEP) awareness, use, and preferences among 37 HIV-negative Latina immigrant transgender women living in the Washington, DC metropolitan area. Overall, awareness, use, and preference were higher for PrEP than PEP. Many participants, however, expressed interest in PEP once learning about it and nearly all expressed the intention to use PEP in the case of risk exposure. When asked to explain their preferences, three key themes emerged from the qualitative data: PrEP and PEP in the body, familiarity and access, and self-perceived risk. Despite the higher awareness, preference, and use of PrEP, there is interest in PEP among Latina immigrant transgender women. For individuals who are unsuitable candidates for PrEP – due to infrequent HIV exposure or unpredictable sexual risk – PEP remains a reliable and effective method of HIV prevention. Both PrEP and PEP are important strategies that should be promoted as part of the menu of HIV prevention options for this population.

Transgender women are disproportionately affected by the HIV epidemic in the United States (U.S.), with an estimated prevalence ranging from 4.3% to 30.6% compared to 0.81% prevalence among the general adult population in the U.S. (Baral et al., 2013; Centers for Disease Control and Prevention, 2022; Clark et al., 2017; Grant et al., 2011; Herbst et al., 2008; James et al., 2016). The large range of HIV prevalence among transgender women is primarily due to the inconsistencies in collecting and reporting gender identity in HIV surveillance and general census data (Centers for Disease Control and Prevention, 2022; Herman et al., 2022; James et al., 2016; Meerwijk & Sevelius, 2017). Additionally, HIV rates are not equally distributed among subgroups of transgender women. From 2019 to 2020, the CDC conducted a national HIV behavioral surveillance study among transgender women in seven U.S. cities and found varying levels of HIV prevalence based on race: Black/African 62%, Latina 35%, and White 17% (Centers for Disease Control and Prevention, 2022). Despite these disparities, Latina transgender women are rarely the focus of HIV-related research, and studies that include them as participants generally combine them with other groups, such as Latino men who have sex with men or transgender women of color (del Río-González et al., 2021).

Social-structural factors such as social and economic marginalization, and lack of social and legal recognition of gender identity, paired with behavioral factors such as substance use, inconsistent condom use, and sex work have been identified as factors contributing to disproportionate burdens of HIV among transgender women (Bass et al., 2022; Ogunbajo et al., 2021; Pacífico de Carvalho et al., 2019; Poteat et al., 2019). Latina immigrant transgender women face additional unique challenges that may further increase their risk of HIV and reduce their access to HIV prevention and care, including fear of deportation preventing them from accessing medical healthcare facilities, cultural attitudes that may influence risky behavior or their perceptions and understanding of HIV risk, and language barriers (Rhodes et al., 2015; Yamanis et al., 2021). A monolingual Spanish-speaking individual will have different experiences than a bilingual individual, such as struggling to find a job, less awareness of healthcare programs, or difficulty accessing English-only programs or services. Thus, it is important to include Latina immigrant transgender women in HIV-related research to identify and address their unique experiences and to reduce their HIV vulnerability.

Pre- and post-exposure prophylaxis (PrEP and PEP, respectively) are effective medications that can reduce HIV prevalence. PrEP reduces the risk of contracting HIV from sex by about 99% if taken as prescribed (Centers for Disease Control and Prevention, 2022). Although PrEP was approved by the U.S. Food and Drug Administration in 2012, (HIV.gov, 2012) awareness, uptake, and adherence among transgender women in the U.S. remains low (Cooney et al., 2023; Dolezal et al., 2015; Holder et al., 2019; Mehta et al., 2011; Ogunbajo et al., 2021; Pacífico de Carvalho et al., 2019; Poteat et al., 2019). In a 2019 quantitative research study of 60 transgender women (Latina transgender women N = 30), 65% of participants were aware of PrEP (Latina transgender women 76.7%) but only 8.2% of participants had ever used or were using PrEP at the time of the study (Latina transgender women 14.3%) (Holder et al., 2019). Similarly, a large longitudinal study of PrEP initiation and discontinuation among a diverse sample of 1312 transgender women in the US (LTW N = 238), conducted between 2018 and 2022, showed that only 21.8% of participants reported any PrEP use over a 24 months follow-up period (Latina transgender women 34.9%). Moreover, rates of PrEP discontinuation in this study were high, with 48.3% in the full sample and 44.6% among Latina transgender women (Cooney et al., 2023).

Research shows a range of barriers that reduce PrEP uptake and adherence among transgender women, including the fear that PrEP will have a negative interaction with hormone replacement therapy, PrEP side effects including nausea and vomiting, and stigma-related barriers such as people thinking that PrEP users have HIV or are promiscuous (Bass et al., 2022; Cooney et al., 2023; Hiransuthikul et al., 2019; Marshall & Mimiaga, 2015; Ogunbajo et al., 2021; Pacífico de Carvalho et al., 2019; Poteat et al., 2019). Having to take PrEP daily has also been identified as a barrier to PrEP adherence (Rael et al., 2018). Furthermore, some transgender women prefer condom use over PrEP use because condoms protect against both HIV and STIs (Ogunbajo et al., 2021).

A research study conducted with Black and Latina transgender women (9 Black and 9 Latina) found that barriers to PrEP uptake included language and cultural difficulties, lack of transgender competent care, and a desire to utilize feminizing hormones over PrEP (Nieto et al., 2021). This same study described personal testimonies from other transgender PrEP users, peer education, and benefits of PrEP use as motivators for PrEP uptake. “Entre Nosotras”, another qualitative study understanding PrEP use among 13 transgender Latina women, found trusted spaces, patient navigation, and social support to be factors supporting the success of PrEP interventions (Zamudio-Haas et al., 2023).

For individuals who cannot use or do not want to use PrEP, PEP can be a good alternative in emergency situations. PEP is an emergency medication that can reduce the risk of contracting HIV if taken within 72 h (3 days) after a potential exposure and must be taken for 28 consecutive days (Centers for Disease Control and Prevention, 2022). The U.S. Department of Health and Human Services published the first guidelines for PEP in 2005. Despite PEP being approved seven years before PrEP, little is known about transgender women’s barriers, awareness, and use of PEP (Fagan et al., 2020). A 2018 survey conducted in New York City to compare PEP access, awareness, and use among transgender women (N = 182), cisgender men of color who have sex with men (N = 177), and cisgender women of color (N = 170) found that PEP awareness among transgender women (62.6%) was lower than among cisgender men (80.2%) but higher than among cisgender women (33.5%) (Koblin et al., 2018). Lifetime PEP use followed a similar trend (transgender women, 13.3%; cisgender men, 15.3%; cisgender women, 7.6%), but the differences were not significant (Koblin et al., 2018). Unfortunately, little research has been conducted on PEP use among Latina transgender women. Additionally, few studies have assessed awareness or use of both PrEP and PEP. A 2015 mixed-methods research study assessing PrEP and PEP awareness among cisgender men who have sex with men (N = 228) recruited in San Juan, Pittsburgh, and Boston found that PEP awareness (41%) was higher than PrEP awareness (21%) across all locations (Dolezal et al., 2015). Conversely, in a 2019 mixed-method research study with 201 transgender women in Baltimore and Washington D.C. (26.9% of whom were Latina), Poteat and colleagues found that awareness of PrEP was higher (86.6% vs. 57.2% PEP); however, most participants were willing to take both PrEP (75%) and PEP (96.4%) (Poteat et al., 2019). A 2018 multi-US city survey of PrEP and PEP awareness and uptake (N = 1,274) among Black men (N = 1,219) and transgender women (N = 55) who have sex with men found that 38.6% of participants had heard of PrEP and 27.6% had heard of PEP, and lifetime use of PrEP (9.2%) was almost double that of PEP (4.9%) (Eaton et al., 2017).

Despite the importance of PrEP and PEP in reducing HIV vulnerability, little is known about awareness, use, and prevention preferences among Latina immigrant transgender women. This gap is notable given that this population is rarely the focus of HIV-related research, (del Río-González et al., 2021) despite experiencing unique challenges that can heighten their risk of HIV and further restrict their access to HIV prevention and care (Rhodes et al., 2015; Yamanis et al., 2021). The present longitudinal mixed-methods study aimed to address this gap by examining PrEP and PEP awareness, use, and preferences among 37 HIV-negative Latina immigrant transgender women living in the Washington, DC metropolitan area.

Methods

Study design

This study utilized a longitudinal concurrent mixed-methods design that included both quantitative (i.e., survey) and qualitative (i.e., semi-structured interviews) data collected during three study visits. While we initially planned for interviews to occur every three months, challenges in recontacting participants and scheduling follow-up visits resulted in a longer interval, with actual visits occurring on average every 4.5 months over a nine-month period. Pursuant to guidelines of community-based participatory research, we convened a Community Advisory Board composed of six Latina transgender women from different community-based organizations in the DC area to advise and provide feedback on all study phases, assist with recruitment, and serve in a peer-debriefing role in which they supported and challenged the research team’s assumptions and interpretations (Creswell & Miller, 2000).

Participants

50 Latina immigrant transgender women living in the DC Metropolitan area were recruited for the study using a long-chain referral method, similar to Respondent-Driven Sampling (RDS; Heckathorn, 2014) but without generating sampling weights for analyses. Eligibility criteria included: (a) having been born in a Latin American country (including Puerto Rico) and later immigrated to the U.S., regardless of U.S. citizenship or documentation status; (b) identifying as a transgender woman; (c) being 18 years old or older; and (d) residing in the Washington, DC metropolitan area. PrEP and PEP use and HIV status were not used as eligibility criteria for the study. The present analysis, however, focuses on the 37 participants who were not living with HIV at the time of recruitment.

Data collection

Study visits took place between April 2019 and October 2020, in private spaces identified as convenient by each participant (e.g., private rooms at local clinics and libraries), except for 9 participants for whom the last visit was conducted via Zoom due to the COVID-19 pandemic. Data were collected via a mixed-methods interview that included quantitative survey data and qualitative open-ended questions, that lasted between 60 and 90 min. Study data were collected and managed using REDCap (Research Electronic Data Capture), a secure, web-based application for data capture hosted at Children′s National (Harris et al., 2009; Harris et al., 2019). Before completing the initial interview, all participants reviewed and signed an informed consent form and had the opportunity to ask questions about their participation. Interviews were conducted in Spanish by native Spanish speakers. This study was approved by the George Washington University Institutional Review Board [IRB #031806]. Participants were compensated for their time and participation: $50 for their baseline visit, $60 for the first follow-up, and $70 for the final visit. Additionally, they were offered a $20 incentive for each new participant they referred to the study (up to three referrals).

At each visit, interviews assessed a range of topics, including demographics, HIV and other health issues, gender affirmation, migration, and discrimination. The present analyses focus on qualitative and quantitative data regarding PrEP and PEP awareness, use, intentions and preferences. Questions about PrEP were administered first, followed by a similar set of questions regarding PEP, and the questions about preference were presented last.

Awareness/Recall:

At baseline, participants were asked if they had ever heard about PrEP/PEP and, if yes, what they knew and where they heard about it. For follow up visits, participants were asked to recall what they remembered about PrEP/PEP from the previous visit. Participants who did not know/recall or who provided inaccurate answers received the standard information given by the clinical study partner NovaSalud, Inc. before continuing the interview.

Participants were also asked whether and how PrEP/PEP were discussed within their communities, and whether they had seen campaigns promoting each strategy. At baseline, these items were administered only to participants who reported prior awareness, and the PEP-specific campaign item was not included. At follow-ups, all participants completed the full set of community awareness and campaign-related questions.

Use:

Participants were asked if they had ever used PrEP/PEP (Baseline) or had used since the last interview (Follow-ups). Participants who reported any use were asked about their experience (e.g., length of use, adherence), and those not currently using PrEP were asked about reasons for discontinuation.

Intentions:

Based on prior PrEP use, participants were asked if they intended to initiate, resume or continue using PrEP in the next 3 months and why. For PEP, participants were presented with a hypothetical scenario involving a condom breakage during sex with a partner of unknown HIV status, and were asked if they would be interested in using PEP under those circumstances. Intention questions were asked from all participants at every visit.

Preferences:

At all timepoints, participants were asked if they would rather use PrEP, PEP, or neither, and to describe the reasons underlying their preference.

Data analysis

Quantitative data:

Frequencies were examined cross-sectionally to describe PrEP/PEP awareness, use, intentions, and preference at each time point, as well as longitudinally to assess patterns of change over time.

Qualitative data:

Verbatim transcripts from all interviews were imported into NVivo version 11 for coding purposes. We utilized thematic analysis for coding to identify coherent and distinct themes (Braun & Clarke, 2006; Richards, 2009). Four randomly selected transcripts were coded separately by the principal investigator (PI) and two bilingual research assistants to create topic codes (e.g., access barriers) who then met to resolve any discrepancies in code definitions, refine codes into distinct hierarchies, and develop a codebook. The remaining transcripts were split equally by the two coders, quality checks of the coding were conducted routinely by the PI, and the team met regularly to resolve any coding conflicts, resolving them first through consensus and, when consensus could not be reached, through a final decision by the PI.

Data integration:

Qualitative and quantitative analyses were conducted independently and subsequently integrated at the interpretation and reporting stage, where we used a weaving narrative approach to enrich the interpretation of our findings (Fetters et al., 2013).

Results

The sample included 37 Latina transgender women who were not living with HIV at baseline. Of them, 92% (n = 34) participated in the first follow-up, and 78% (n = 29) participated in the final visit. There were no significant differences in age, time residing in the US, or PrEP use at baseline between participants who completed all three interviews (n = 29) and those who did not (n = 8). Participants ranged in age from 18 to 63 years old with a median age of 35. More than half of the women were from El Salvador (51%), a quarter (24%) were from other Central American countries, and the remainder were from South America or the Caribbean. The median number of years women had lived in the US was 10, ranging from less than one year to 39 years. Participant-level data are presented in Table 1.

Table 1.

Participant characteristics and PrEP/PEP use and awareness (n = 37).

				PrEP use				PEP use
ID	Agea	Years in U.S.	PrEP aware at BL	BL use	FU1 use	FU2 use	PEP aware at BL	BL use	FU1 use	FU2 use
1	31–35	≤5	Yes	Current	Current	Current	No	No	No	No
2	31–35	>10	Yes	No	*	**	No	No	*	**
3	31–35	>10	Yes	No	No	No	No	No	No	No
4	≤30	≤5	Yes	No	No	No	No	No	No	No
5	31–35	>10	Yes	No	No	**	No	No	No	**
6	>35	>10	Yes	No	No	No	Yes	No	No	No
7	>35	≤5	Yes	Current	Current (Inconsistent)	Current	Yes	Yes	No	No
8	>35	≤5	Yes	Previous	No	No	Yes	No	No	No
9	>35	>10	Yes	Previous	Previous	No	Yes	No	No	No
10	≤30	6–10	Yes	No	No	No	No	No	No	No
11	31–35	>10	Yes	No	New (Inconsistent)	No	Yes	No	No	Yes
12	31–35	>10	Yes	Previous	No	No	No	No	No	No
13	≤30	>10	Yes	No	Current	No	Yes	No	No	No
14	>35	>10	Yes	No	No	No	No	No	No	No
15	31–35	≤5	Yes	No	No	No	No	No	No	No
16	≤30	≤5	Yes	No	No	No	No	No	No	No
17	>35	>10	Yes	No	No	No	No	No	No	No
18	≤30	≤5	Yes	No	No	No	No	No	No	No
19	>35	>10	Yes	Previous	No	No	No	No	No	No
20	≤30	6–10	Yes	Previous	Current	**	No	No	No	**
21	31–35	≤5	Yes	Previous	No	No	Yes	Yes	No	No
22	31–35	≤5	Yes	No	*	**	N/R	No	*	**
23	31–35	≤5	Yes	No	No	No	Yes	No	No	No
24	>35	>10	Yes	No	New	No	No	No	No	Yes
25	31–35	>10	Yes	No	No	No	Yes	No	No	No
26	>35	6–10	Yes	No	No	No	Yes	No	No	No
27	31–35	6–10	Yes	Previous	No	No	No	No	No	No
28	>35	>10	Yes	No	No	**	Yes	No	No
29	31–35	≤5	No	No	No	No	No	No	No	No
30	>35	>10	Yes	No	No	No	Yes	No	No	No
31	≤30	6–10	Yes	Previous	No	No	Yes	No	No	No
32	≤30	6–10	Yes	Previous	*	**	Yes	Yes	*	**
33	31–35	6–10	Yes	Current	Current	No	No	No	No	No
34	31–35	6–10	Yes	No	No	**	Yes	No	No	**
35	>35	≤5	No	No	No	No	No	No	No	No
36	≤30	6–10	Yes	No	No	No	No	No	No	No
37	>35	>10	Yes	No	No	**	Yes	No	No	**

^aAge ranges provided for confidentiality of participants.

^*Lost to first follow up,

^**Lost to second follow up.

Overall awareness, use, and preference were higher for PrEP than for PEP among the sample; however, many participants expressed interest in PEP after learning about it, and nearly all expressed intention to use PEP in the case of risk exposure. Our analysis revealed nuanced themes around PrEP and PEP preferences. First, we present the results related to PrEP and PEP awareness, followed by PrEP and PEP use among the sample, and then focus on the main findings regarding PrEP and PEP preferences.

PrEP and PEP awareness

At baseline, 94.6% (n = 35) of women reported that they had heard of PrEP, while only 44.4% (n = 16) reported being aware of PEP (Table 2). Furthermore, at follow-up visits, all participants recalled the PrEP discussion from baseline, but less than a third recalled the discussion regarding PEP at both first (32.4%) and second (31.0%) follow-up.

Table 2.

PrEP and PEP awareness, use, and preferences.

	Baseline	First follow-up	Second follow-up
	N = 37	N = 34	N = 29
	n (%)	n (%)	n (%)
PrEP
Heard of PrEP	35 (94.6%)
Source (choose multiple)
Health clinic	17 (48.6%)
Friends	6 (17.1%)
Community health worker/peer outreach	5 (14.3%)
Services for transgender community	3 (8.6%)
Media/Social Media (Facebook)	2 (5.7%)
Other sources	2 (5.7%)
Report PrEP discussion among Latina transgender Community	21 (60.0%)	15 (44.1%)	19 (58%)
Seen Campaigns Promoting PrEP	10 (27.0%)	4 (11.8%)	7 (24.1%)
Recall PrEP discussion from prior visit		25 (73.5%)	25 (86.2%)
PrEP use
Previous PrEP Use	9 (24.3%)	1 (2.9%)	4(13.7%)
Current PrEP Use	3 (8.1%)	7 (20.5%)	2 (10.3%)
Ever tried to obtain PrEP	5 (13.5%)
Intention to use PrEP
Yes	16 (43.2%)	12 (35.3%)	8a (28.6%)
No	11 (29.7%)	10 (29.4%)	13a (46.4%)
Unsure	10 (27.0%)	12 (35.3%)	7a (25.0%)
PEP
Heard of PEP	16b (44.4%)
Source (choose multiple)
Health clinic	7 (43.8%)
Community health worker/peer outreach	4 (25.0%)
Services for transgender community	4 (25.0%)
Media/Social Media (Facebook)	2 (12.5%)
Friends	1 (6.3%)
Other sources	1 (6.3%)
Report PEP discussion among Latina transgender Community	6 (37.5%)	1 (2.9%)	1 (3.4%)
Seen campaigns promoting PEP		3 (8.8%)	1 (3.4%)
Recall PEP discussion from prior visit		11(32.4%)	9 (31.0%)
PEP Use (Ever or since previous interview)	3 (8.1%)	0 (0)	2 (6.9%)
Interested in PEP	22c (66.7%)	25 (73.5%)
Intention to use PEP after risk exposure	33b (91.7%)	29 (85.3%)	25 (86.2%)
PrEP – PEP Preferences
PrEP	22b (61.1%)	26 (76.5%)	24 (82.8%)
PEP	11b (30.6%)	8 (23.5%)	5 (17.2%)
Neither	3b (8.3%)	0 (0)	0 (0)

Notes: Due to missing values, some sample sizes vary:

^an = 28,

^bn = 36,

^cn = 33.

Among those who had heard of PrEP or PEP, most reported hearing about them in a health clinic (PrEP 48.6%; PEP 43.8%). When asked whether they had seen promotional campaigns for PrEP, some participants noted seeing campaigns for the general sexual and gender minority community, but only 27.0% (n = 10) of women reported seeing campaigns specific to the Latina transgender community at baseline. Few reported seeing any PEP campaigns for Latina transgender women at both first (8.8%) or second follow-up visits (3.4%). The frequency with which participants were exposed to campaigns promoting either PrEP or PEP remained low throughout the study period.

Consistent with their own lack of awareness about PEP, participants reported that PEP is generally not discussed within the Latina transgender community. In the baseline visit, only six participants said PEP was talked about in the community, compared to 21 participants who reported PrEP discussions within the community. Describing the level of familiarity women have with PrEP and PEP in the Latina transgender community, one participant discussed whether she had talked with anyone about these topics as follows:

Only with the girls in the group. About PEP, no, that’s not very well known. About PrEP, yes, most people see it on the internet too. In [country of origin] I also heard about it, the girls tell me that there are programs for [PrEP] there.

(Participant 17)

PrEP and PEP use

At baseline, nearly one-third of the sample reported any PrEP use (n = 12, 32.4%). Of them, nine had previously used PrEP but stopped before the study, and three participants were taking PrEP at baseline. At the first follow-up, eight (23.5%) participants reported taking PrEP, three of whom were new PrEP users, two of whom restarted PrEP, and three of whom had continued using PrEP since baseline. By the second follow-up, only two participants were using PrEP, both of whom had been taking PrEP prior to baseline. Overall, 15 participants (40.5%) reported PrEP use at any point before or during the study period; however, only two participants continuously used PrEP throughout the study.

Among participants who used PrEP, quantitative data revealed that the most common reasons for stopping were “Trusts other HIV prevention methods more” (8/9), ′′Concerned about side effects′′ (8/9 in BL) or “Experienced side effects” (7/9 in BL). Qualitatively, participants described feeling that PrEP was no longer relevant due to decreased sexual activity, discussed side effects (e.g., gastrointestinal issues), and voiced concerns about interaction with hormones. One participant described her reason for stopping PrEP as, “I don’t feel the need to be taking it. I think if I’m going to have a relationship, there are other methods I can use to avoid getting infected” (Participant 9). Another participant echoed this sentiment saying, “I am sexually active but I felt it was absurd, from my point of view. We’re not all the same. I always use a condom, and I think it is the best way to avoid [HIV]” (Participant 32).

Finally, several participants reported discontinuing PrEP due to side effects, burden of using multiple medications, and uncertainty about PrEP’s long-term effects. One participant described feeling it was too much to take PrEP along with other medications, including hormones, saying, “At that time I had three or four treatments … I had too many medications, so I felt like I was going crazy, I had to abandon the process” (Participant 27). Another participant echoed this sentiment and further articulated concerns about long-term effects:

I had read so much that it damaged the kidneys, the bones and I don’t know what else, but in the end, psychologically, I felt like it was affecting me in some ways, so I just said no, I didn’t take it … I told [my doctor] that I felt like I was knocked out by that pill; it scared me with the hormones.

(Participant 31)

In terms of PEP, both prior and current PEP use were far lower among the sample with only three participants reporting prior PEP use at baseline. No participants reported using PEP at the first follow-up and two reported PEP use at the second follow-up. As shown in Table 1, participant 24 who was unaware of PEP prior to this study, reported PEP use at the 6-month follow-up visit. This participant sought out PEP after experiencing a condom breakage during sex and spoke about her intentions to restart PrEP after completing the PEP treatment saying, “I used [PrEP] before, but I stopped; with the problem I had now, I’m going to use it again”.

Among the five participants who had used PEP, each shared their experience of using PEP when they were concerned about their sexual partner’s status after condom breakage, sexual encounters while under the influence of alcohol when they could not recall if a condom was used, or in the case of sexual violence. One participant described her experience taking PEP as follows:

One time I went out to a club, went dancing, and had sex with a guy, and I was scared because I couldn’t remember if I’d had protection. Luckily, it was a weekday, so I went and got PEP, to empower myself. It was very easy; they helped me, they got me everything.

(Participant 32)

Another participant who is a PrEP user described her experience using PEP as follows:

Yes, [I used PEP] once before starting PrEP. I had sex with someone who I knew had a partner who had sex with someone who was HIV positive, so I said, “(…) maybe he has [HIV] too”. I went to the doctor the next day, they asked me all the procedures, questions, and everything, then they gave me PEP […] at [a community clinic].

(Participant 7)

PrEP and PEP preferences

When asked about their preference between the two options at baseline, the majority of participants preferred PrEP (61.1%), almost one-third preferred PEP (30.6%), and the remaining had no preference (8.3%). When asked to explain their preference, we found three key themes: PrEP and PEP in the body, familiarity and access, and self-perceived risk.

PrEP and PEP in the body

Among participants who preferred PrEP, many perceived PrEP to be more effective than PEP because it was already “in their system”. One participant articulated her perception of PEP as an emergency medication in contrast to PrEP as an ongoing prevention strategy:

Because I am taking care of myself and [PrEP] is constantly there and the other one [PEP], well, only for 28 days, and if I am unsure whether I can or cannot get infected, then it is like a prevention, the other one is more like stopping the disease.

(Participant 28)

Some participants expressed doubts regarding whether PEP was as effective as PrEP. One participant simply said, “Because it [PrEP] is more preventive than the other one” (Participant 36). Another participant said she was more confident in PrEP than PEP “because [PrEP] is before exposure, whereas the other one is after, so it may help me, it may not help me” (Participant 31).

Participants who preferred PEP described the appeal of the shorter course compared to a potential lifetime on PrEP and the ability to prevent HIV after an exposure. One participant described why she preferred PEP as follows:

I think PEP, because it’s a short period of time. On the other hand, PrEP is forever, I think, until you decide not to.

(Participant 13)

Another participant described PrEP’s side effects as the main deterrent for her in using it and the reason she would prefer taking PEP in the case that she needs it:

PrEP is going to give me side effects when I don’t even need them, why have them? I’m going to vomit, have diarrhea, nausea, dizziness. Honestly, because of my high blood pressure, I prefer not to take it.

(Participant 21)

Familiarity and access

Most participants described being more comfortable with PrEP due to their familiarity with it, from hearing about it in both clinical settings and from peers in social settings. One participant described her preference for PrEP as follows:

Because it’s been mentioned, not only here but in [another city in the DMV]. I have a trans friend over there in [another city in the DMV] and a gay friend told us that he’s on PrEP, so it’s mentioned more. It’s mentioned a lot, I feel safer.

(Participant 20)

Several participants also expressed concerns about access to PrEP and PEP, identifying barriers in terms of both the process for obtaining them and their cost. When one participant was asked if she had ever used PEP, she responded “No, because to begin with, even if they told me right now [to get PEP], I don’t know where I’d have to go” (Participant 13). Another woman described familiarity with and accessibility to PrEP, but also the barrier of cost:

Some are using [PrEP], most apply for it through DC, they feel a little safer with this. If you don’t have health insurance, the cost [of PrEP] is not as affordable.

(Participant 17)

One participant described the challenges of trying to obtain PEP versus PrEP, alluding to the potential to use PEP if it were as readily available as PrEP:

PrEP is more accessible than PEP … I’d like to have [PEP] at my house within reach. Let’s say last night … I was exposed, so you run and grab the pills instead of going and waiting for an appointment. It’s really complicated, and if I don’t see [my doctor] today, and if 72 h pass, I’d already be dead … It has to be more accessible. “Look, these are the pills if you’re in danger. Have them ready for when you want to use them.”

(Participant 25)

Another participant suggested opportunities for PEP to be distributed more widely within the transgender community:

Just like they give away condoms and lubricants and the pile of cards from all the institutions, we should give that away more and promote it more, especially for transsexuals because that happens … If that little pill is of any use to you, then great, I’d like to have it in my house and in my purse.

(Participant 21)

Assessing risk to determine choice

Preferences for PrEP and PEP were largely linked to women’s personal risk assessments based on their patterns of sexual behavior and frequency of sex. Several women in the study reported not being sexually active and said that PEP would be compelling for them, specifically because they felt that PrEP did not make sense for them given their lack of ongoing risk. The appeal of PEP for these women is that it would allow them to ensure they could prevent disease transmission if they had a sexual encounter that placed them at risk, as described in the following quote:

In case I have someone of questionable background to be sure that I’m going to be okay, I would do that PEP and after 1 month I know that everything is working well and my normal life is going on.

(Participant 02)

Another participant articulated the appeal of using PEP in sexual relationships where she fears that her partner may expose her:

If you have any insecurities about a partner you’ve had sex with and feel unsafe, then yes [I would use PEP] … because of some mistrust about a sexual relationship I had with a person who has the virus and preventing it within 72 h.

(Participant 16)

Two participants concluded that they preferred condom use over either PrEP or PEP. One woman noted the appeal of protection from other STIs that condoms offer and the comfort she had using condoms as her sole prevention method:

What’s the point of protecting myself from HIV if I’m going to get other viruses, bacteria, fungi? I prefer a condom, I’m old-fashioned. I used to work in prevention and people would say to me, “What am I going to wear that piece of rubber for?” Now I say, “How am I going to take PrEP?” I’m already used to it [condom use], once you get used to something, you’re done …

(Participant 23)

Self-assessed risk, on a case-by-case basis, frequently guided participants’ preference for one prevention method over another, as described in the following quote:

Because I would already be taking PrEP and I don’t know if I’m going to be with someone who is positive. I think that PrEP will work. But if I’m not on PrEP and I have an experience without a condom with someone who I think is sick, then it would be the other one (PEP).

(Participant 34)

One participant explained why she is interested in PEP as follows:

Because I work in sexual services. If a client’s condom breaks, I’d like to have it [PEP] on hand, but if the institution doesn’t have it and you go looking for it, it’s already messed up because of my mentality … so it would be good to always have it in your wallet in case – God forbid – a mistake happens, so you can be on the safe side … it would be good if they give it to every girl to carry it in her purse, just like we have a condom. If for some reason a condom breaks, you take it, and the next day you run out and say, “I’m taking this and that”, and the 28 days begin … In my opinion, 80% of us transsexuals are dedicated to sexual services, and it would be worth having it in your purse.

(Participant 21)

Despite the initial preference among the sample for PrEP, when women learned of PEP, most expressed interest and said they would use it in an emergency. Across all time points, more than 85% of participants, regardless of previous PrEP/PEP use, reported that they would use PEP if they were worried about HIV risk after a condom breakage in a recent sexual encounter (Table 2). One woman described that she would be concerned after possible exposure and seek out PEP as follows, “Definitely yes, because I’m going to be scared. I’d better take care of myself. I’m going right now to find PEP because I need to take care of myself. I’ll do it there”. (Participant 29) Additionally, a previous PrEP user described the importance of PEP in the case of sexual violence saying:

I’d be interested [in PEP] because I’m not currently taking PrEP, so I think, let’s say, if I slept with someone or were raped, I would be willing to take it.

(Participant 31)

Discussion

Our study findings underscore the need to ensure that a menu of HIV prevention options is available to Latina transgender women so they can choose the method that works best for them. Echoing prior research, (Eaton et al., 2017; Poteat et al., 2019) participants in this study were far more familiar with PrEP than PEP and while approximately twice as many had taken PrEP than PEP, most were willing to take either. Participants in this study discussed several barriers already well-documented in the literature, (Hiransuthikul et al., 2019; Marshall & Mimiaga, 2015; Pacífico de Carvalho et al., 2019; Poteat et al., 2019) including fear of negative interactions with hormone replacement therapy, side effects, burden of daily medications, (Rael et al., 2018) and preference for condom use due to the benefit of STI protection (Ogunbajo et al., 2021). Interest in PrEP or PEP as HIV prevention methods was closely linked with self-perceived sexual risk, beliefs regarding PrEP and PEP’s effects in the body, and participants’ familiarity with and ability to access each method. This mixed methods study allows us to consider how qualitative findings illuminate the quantitative results from this analysis. For example, the low baseline awareness of PEP (44.4%) and low recall at follow-up visits (32.4% and 31.0%) could be directly linked to qualitative themes around lack of community-level awareness, limited campaigns, and confusion about biomedical prevention.

Despite the majority of the sample not being as familiar with or having taken PEP at baseline, participants recognized that the Latina transgender community should be aware that PEP is an HIV prevention option available, citing the realities of condom breakage, “dubious” partners, infrequent – but potentially high-risk – sex, and sexual violence. After learning about it, many participants identified PEP as a good alternative for HIV prevention, considering the diversity of needs within the community. This knowledge-interest gap points to a substantial unmet need and indicates that the concept of PEP is intuitive and acceptable when explained, and that low awareness is more likely the result of structural and communication gaps than a lack of prevention motivation. Importantly, the high willingness observed here highlights a critical opportunity: targeted, culturally tailored PEP education and streamlined access pathways could rapidly translate interest into uptake within Latina transgender communities. To this point, a few participants envisioned a world in which PEP could be much more easily accessible to them and their peers, such as being distributed in sex work venues or being available for them to carry in their purse or keep in their home, should they need it. The “PEP in pocket” strategy, in which individuals with low frequency of higher-risk HIV exposures are given a prescription for 28-days of PEP to initiate as needed, has been found to be acceptable, feasible and effective (Billick et al., 2023; Clifford Rashotte et al., 2024). Utilizing such alternative approaches to get PEP into the hands of community members will be key to increasing awareness and access, which could translate to PEP becoming a more widely used HIV prevention option among this population. Moreover, prior studies have shown that PEP can serve as a bridge to getting people with ongoing HIV risk started on and adhering to PrEP (Cockbain & Whitlock, 2022).

The lack of communication campaigns designed specifically for Latina transgender women may contribute to this population not receiving sufficient information about HIV prevention strategies and also not feeling that these options are accessible to them. While the Washington, DC Health Department (DC Health) launched a bilingual (English-Spanish) PrEP communications campaign specifically for the Latina transgender community in 2017, few participants in this study reported having seen the campaign. Our findings indicate that the community needs clear, comprehensive, and population-specific information provided on all HIV prevention options. Materials should be developed specifically for this population, and provide information on all prevention options, ensuring that Latina transgender women are able to make informed decisions about which option is best for them.

Limitations

The current findings should be considered exploratory in nature, considering the small sample size, reliance on a non-probability sample and the use of a referral-based recruitment strategy that may have introduced network bias (i.e., individuals within the same social circles might have been more likely to participate). In terms of data collection, 9 (out of 29 total) interviews for the second follow-up were conducted during the COVID-19 pandemic, which could contribute to the context provided in the women’s narratives during this time and thus impact their responses to some of the questions. Specifically, the COVID-19 pandemic may have influenced healthcare access, PrEP and PEP use, sexual behavior, and HIV prevention messaging during the last months of the study period. Additionally, this study was conducted in the Washington DC metropolitan area, an immigrant- and trans-friendly urban setting in which significant resources have been dedicated to raise awareness of HIV prevention methods; therefore, findings may not be representative of Latina transgender women living in other areas of the U.S (Bass et al., 2022; Poteat et al., 2019). Finally, although participant retention in our study was high (91.9% for the first follow-up and 85.3% for the second), we do not have complete longitudinal data for eight participants, for whom potential changes in PrEP or PEP use remain unknown. It is important to point out, however, that there were no significant differences among participants who completed all three time points and those who were lost to follow-up.

Conclusions

While pre-exposure prophylaxis (PrEP) is a valuable tool for preventing HIV transmission, it should not overshadow the importance of post-exposure prophylaxis (PEP). For individuals who are not suitable candidates for PrEP – due to infrequent HIV exposure or unpredictable sexual risk – PEP remains a reliable and effective HIV prevention method. Despite higher awareness, preference, and use of PrEP, there is a significant interest in PEP among Latina immigrant transgender women and it is an important strategy that should also be promoted as part of the menu of HIV prevention options for this population. Furthermore, it is important to reframe PrEP and PEP as complimentary rather than competing HIV prevention options considering the important role taking PEP can play as an introduction to PrEP use.

Data availability statement

Deidentified individual data will be made available upon reasonable request. Further details can be obtained by emailing Dr. Ana María del Río González (amdelrio@gwu.edu).