High levels of unmet PrEP needs among transgender women in Brazil

A study recently published in The Journal of Acquired Immune Deficiency Syndromes indicates that transgender (trans) women in Brazil had low levels of pre-exposure prophylaxis (PrEP) awareness. This was combined with significant proportions being willing to use PrEP as a prevention tool and being eligible for PrEP.

Another recent qualitative study published in Culture, Health and Sexuality provides a contextual frame for these findings as it explores the HIV programming needs of trans women in Brazil. Several social and contextual factors, such as experienced and anticipated trans discrimination and HIV stigma, were linked to an avoidance of prevention and treatment services for both HIV-negative and positive trans women. In addition to biomedical interventions, socio-structural interventions also emerged as crucial for trans women in Brazil.

Globally, trans women are at a disproportionally higher risk of contracting HIV – this is estimated at 49 times higher than other groups. In the South American context, particularly Brazil, trans women have substantially higher rates of HIV prevalence, even when compared to other key populations such as men who have sex with men. It has been estimated that nearly a third of all trans women in Brazil may be infected with HIV, often accessing healthcare testing and treatment services late. This key population has been described as the most at-risk group in the country.

There is a lack of specific HIV prevention aimed at trans women in Brazil. The unique needs of this community raises specific challenges: transphobia and healthcare-related stigma, social and economic marginalisation, as well as issues related to gender-related health care (such as concerns about interactions between HIV medications and hormone therapy).

The first study utilised respondent-driven sampling to recruit trans women for face-to-face interviews which assessed PrEP awareness and willingness. It also estimated how many trans women would be considered eligible for PrEP, based on factors such as not being in a monogamous relationship, having had condomless anal sex or an STI in the past 12 months or an HIV-positive sexual partner in the last three months. The survey was conducted from August 2015 to January 2016 and data was collected from 345 participants. All participants identified as trans women and resided in Rio de Janeiro. Most participants were aged 25-35, with eight years or less of formal education.

Participants were first asked a question to probe for awareness of PrEP; after a brief explanation, they were asked about willingness to take PrEP. Additional questions included concerns about PrEP as well as preferred routes of administration, sexual behaviour, drug and hormone use, experiences of health-related stigma and so forth. HIV and STI testing was carried out with all participants after the survey was conducted.

Of the 345 participants offered HIV testing, 59% were HIV negative, 29% had previously been diagnosed with HIV and 12% were newly diagnosed with HIV. Thirty-eight per cent of respondents had heard about PrEP, while 49% had heard about post-exposure prophylaxis (PEP). However, only 6% of those who were not known to have HIV infection had ever accessed PEP. Higher PrEP awareness was associated with accessing health services in the past six months (adjusted odds ratio 2.1, P = 0.004), having at least one known HIV-positive partner (AOR 2.0, P = 0.04) and more than eight years of education (AOR 1.5, P = 0.079). Lower PrEP awareness was associated with condomless anal sex (AOR 0.6, P = 0.04) and a newly diagnosed HIV infection (AOR 0.4, P = 0.035).

PrEP willingness was assessed in those who self-reported as HIV negative. The majority of participants (76%) expressed willingness to use PrEP after a brief explanation, despite concerns about side-effects and interactions with hormones. Factors positively associated with PrEP willingness included being younger (aged 18-35) and high perceived HIV risk (participants’ rating of how likely they were to contract HIV in the next year). Factors associated with being less willing to use PrEP included concerns with long-term effects of PrEP and possible challenges accessing it as a result of stigma encountered in healthcare settings. A high percentage of HIV-negative trans women met the criteria for PrEP eligibility criteria (67%), rising to 78% of those discovered to be newly infected during the study. This indicates a significant need for PrEP as a prevention tool in this community.

Qualitative findings

Qualitative data from focus groups carried out with trans women in Brazil provides more context to the quantitative data presented above. Six focus groups were conducted with 36 trans women in 2015 in Rio de Janeiro. Three groups were held with 21 HIV-negative trans women and three with 15 HIV-positive trans women. Health professionals, including one trans woman, conducted the focus groups. Topics included HIV prevention and considered both socio-behavioural factors (such as access to social support and adherence support) and biomedical strategies (such as PrEP and self-testing). Forty-two per cent of participants were aged 18-30, with only 6% having college education.

Transphobia in public healthcare settings emerged as a strong theme from the focus groups. There was a link between trans discrimination and HIV-related stigma, with an assumption that any health problems with trans women were HIV-related. In certain instances, this interfered with access to care in order to avoid stigma. Transphobia manifested in ways such as not having one’s social name respected, with health providers instead using male birth names. Participants also expressed a disconnect between transgender-affirming social and civil policies and the reality of day-to-day practice in healthcare settings in Brazil.

“If we arrive in a public hospital now… If I arrive with a pain here… [the response is] to do an HIV test” (Ana, HIV negative).

“Sometimes, they are dying at home and they don’t want to go to urgent care because [they think] ‘they are going to associate me with HIV’” (Gabriela, HIV positive).

Additionally, violence towards trans women (particularly from sexual partners) emerged as a factor that limited HIV prevention. Trans women are in a particularly vulnerable situation as many earn a living through sex work and are in precarious economic positions.

“When I said that I would only have sex with condoms, he had an extremely aggressive attitude… he tried to physically hurt me.” (Juliana, HIV negative).

While biomedical strategies such as PrEP and Treatment as Prevention (TasP) were considered attractive options beyond condoms, there were concerns related to PrEP making individuals feel invulnerable, doubts about the efficacy of PrEP and doubts about having correct and accurate information. There was also concern about PrEP being another source of stigma as those in the community might not fully understand it.

“Let’s talk about PrEP… for as much as I had said it was a treatment for pre-exposure, people called me, sent Facebook messages, others more openly asked if I was sick.” (Juliana, HIV negative).

An important theme that emerged was that participants trusted information more when it came from other trans women. This emphasises the need for peer-based information and support networks. Prevention and treatment services that employed trans women were seen as more desirable and welcoming.

“There is a trans person who knows how to talk like me, like all of us, she speaks the same language and makes us feel considered, we feel welcome thanks to her.” (Ana, HIV negative).

Considering the findings from both these studies, it is evident that trans women are at high risk of contracting HIV and that the combination of low awareness, high willingness and substantial PrEP eligibility means that there is a definite need to upscale PrEP education and access in trans communities.

Brazil is currently in the process of national PrEP implementation through its public health system yet trans-specific interventions are lacking. Additionally, biomedical interventions cannot be removed from their social context and thus social strategies to combat stigma, violence and discrimination – in both healthcare settings and in broader communities – while implementing gender-affirming and empowering services are crucial for trans women in Brazil.