High awareness but low uptake of PrEP among Black and Hispanic transgender women in US study

Image credit: The Gender Spectrum Collection. Image is for illustrative purposes only.

There is high awareness but low uptake of HIV PrEP (pre-exposure prophylaxis) among black and Latina transgender women in Baltimore and Washington DC, investigators report in the Journal of Acquired Immune Deficiency Syndromes. Although 87% had heard of PrEP, only 17% had taken it. However, three-quarters of HIV-negative individuals who had never taken PrEP said they would be willing to do so.

Willingness to take PrEP was associated with a history of transactional sex. But greater knowledge of HIV and legal gender affirmation were both associated with reduced willingness to consider the therapy. 

“We found high PrEP awareness but low uptake,” note the authors. “The most commonly reported reason for being unwilling to take PrEP was concern about drug interactions with gender affirming hormones, a concern that is also a barrier to antiretroviral therapy adherence among transgender women living with HIV. In contrast to high levels of concerns about drug interactions among Black and Latina transgender women unwilling to take PrEP, few PrEP users reported experiencing interactions with hormones.”



An umbrella term for people whose gender identity and/or gender expression differs from the sex they were assigned at birth.

adjusted odds ratio (AOR)

Comparing one group with another, expresses differences in the odds of something happening. An odds ratio above 1 means something is more likely to happen in the group of interest; an odds ratio below 1 means it is less likely to happen. Similar to ‘relative risk’. 


How well something works (in a research study). See also ‘effectiveness’.

focus group

A group of individuals selected and assembled by researchers to discuss and comment on a topic, based on their personal experience. A researcher asks questions and facilitates interaction between the participants.

drug interaction

A risky combination of drugs, when drug A interferes with the functioning of drug B. Blood levels of the drug may be lowered or raised, potentially interfering with effectiveness or making side-effects worse. Also known as a drug-drug interaction.

HIV prevalence among black and Latina transgender women in the United States is high, exceeding 50% in some studies, with other research showing that transgender women are especially vulnerable to HIV with annual incidence rates close to 3%. This group therefore has an urgent need for acceptable, accessible and effective HIV prevention interventions.

Although PrEP is highly acceptable and effective in men who have sex with men (MSM), clinical trials found disappointing efficacy among transgender participants, largely due to sub-optimal adherence, which was as low as 18%, and associated with the use of feminising hormones. However, PrEP was found to be effective in transgender women who adhered to their treatment.

A three-stage continuum of PrEP care has been identified: awareness, uptake and adherence. Significant racial and gender disparities have already been identified in the latter two stages. A team of investigators led by Dr Tonia Poteat of Johns Hopkins University wanted to establish a clearer understanding of PrEP awareness and uptake among black and Latina transgender women.

They therefore designed a study with 201 participants recruited in Baltimore and Washington DC. Data were gathered during in-depth interviews and focus groups.

The participants were aged between 19 and 82 years (median: 34 years). The majority identified as black or African American (62%), with 27% identifying as Latina/Hispanic and 10% as indigenous. 

There were high levels of poverty and unemployment.

Two-thirds had documents with their desired name and gender and 78% were currently taking gender-affirming hormones.

HIV prevalence was high (56%). Participants had a good knowledge of HIV and also perceived their HIV risk as high. Almost 80% reported transactional sex and 47% said they had had unprotected anal sex in the previous 12 months.

The participants had a high sense of transgender pride.

The majority (87%) had heard of PrEP. Although 80% of these individuals knew where to obtain the treatment, only 17% had actually done so.

However, despite low uptake, 75% of HIV-negative participants said they would be willing to take PrEP if it were available to them.

After adjustment for other factors that could skew the results, increased HIV knowledge was associated with reduced willingness to use PrEP (aOR = 0.32; 95% CI 0.10-0.97). “One potential explanation for this finding is that Black and Latina transgender women who are most knowledgeable about HIV transmission, may prefer other methods to reduce their HIV risk,” suggest the authors. “Ad hoc post-test counseling discussions…revealed that [women] who had received past HIV prevention education felt that condoms were a better approach given their ability to prevent sexually transmitted infections.”

"The most commonly reported reason for being unwilling to take PrEP was concern about drug interactions with gender affirming hormones."

Legal gender affirmation was also associated with lower willingness to consider PrEP (aOR = 0.10; 95% 0.01-0.811). The investigators suggest that this may be a by-product of the MSM-focused promotion of PrEP.

However, a history of transactional sex was associated with higher PrEP willingness (aOR = 5.79; 95% CI, 1.00-33.7). The authors suggest that transgender women with a history of sex work should be prioritised for PrEP implementation.

Among those not willing to take PrEP, the most commonly cited reasons were concern about interactions with hormones (65%), side-effects (47%) and having to take pills daily (41%).

Women who had taken PrEP were asked about their experience with it. The main concerns were a perception by others that they were taking medication because they were HIV positive (52%), side-effects (44%) and feeling that they were not at risk of HIV (38%). Of the experiences asked about, the least reported was interaction with hormones (15%). The investigators highlight the findings of recent clinical trials that there are no meaningful interactions between PrEP and feminising hormones.

Interviews provided further insights into possible reasons for reluctance to use PrEP. These included distrust of the medical establishment and an excessive focus on HIV by health institutions at the expense of other needs for transgender women. Participants also emphasised the importance of incorporating PrEP and HIV services within programmes that were responsive to wider community concerns, such as violence prevention, employment and housing. It was also apparent that staff providing services for transgender individuals were not always using correct names or pronouns and that stigma was eroding trust in healthcare providers.

“Awareness of HIV risk, awareness of and willingness to take PrEP may be necessary but [are] insufficient for PrEP uptake,” conclude the authors. “Future research and interventions should address not only PrEP engagement and structural barriers that limit access, but also ensure that approaches are community-led, empowering, and affirming.”


Poteat T et al. A gap between willingness and uptake: findings from mixed methods research on HIV prevention among Black and Latina transgender women. Journal of Acquired Immune Deficiency Syndromes, 2019. doi: 10.1097/QAI.0000000000002112. (Abstract).