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What message are we sending to young people who are trans or gender nonconforming when we don’t even count them? We suggest their identities don’t even matter.
—Laverne Cox, 2015 Social Good Summit
Trans and non-binary people are key populations whose HIV prevention and treatment needs have been neglected. A 2013 meta-analysis of data from 39 studies conducted in 15 countries reported a global HIV prevalence among trans women of nearly 20%, with trans women estimated to be 49 times more likely than other adults to be living with HIV.1 Moreover, mortality from HIV/AIDS among trans women in a large cohort study was just over 30 times that of age-matched population controls.2
Data on HIV among trans and non-binary people in the UK are scant. This is important as HIV prevalence among trans people in the UK may differ from global estimates given lower rates of undiagnosed HIV infection in the UK, high levels of viral suppression and access to free healthcare. Prior to 2014, HIV surveillance systems in England used binary gender identity categories, rendering trans and non-binary populations living with HIV invisible. In 2017, Public Health England (PHE) presented preliminary data from the HIV and AIDS Reporting System (HARS), reporting that 199 trans adults accessed HIV care in 2016, representing 0.3% of all people accessing HIV care in England (personal communication, P Kirwan, Public Health England, 3 May 2018). Of note, these data reveal that trans adults with HIV were twice as likely as other adults to be diagnosed late with a CD4 count of <350 mm3. It is not possible to determine accurately the HIV prevalence among trans women and men in the UK because there are currently no census data on the overall number of persons who identify as trans or non-binary in the UK. What message indeed are we sending to trans people when we don’t even count them?
Trans and non-binary people may experience a constellation of social stressors and structural inequalities placing them at increased risk of HIV infection. Stonewall’s recently published Trans Report makes for sobering reading.3 Two in five trans people have experienced a hate crime because of their gender identity in the last 12 months. More than a quarter of trans people in a relationship have faced domestic abuse from a partner. One in four have experienced homelessness. This complex interplay of social vulnerability and widespread transphobia can impact mental health, manifesting in alcohol and substance misuse4 and an increased risk of depression, anxiety and suicidal ideation,5 all of which are in turn associated with an elevated risk of HIV acquisition. Workplace discrimination, poverty and homelessness may place trans people at further risk of HIV. There is a higher prevalence of history of sex work in trans women than in other groups.6 International data reveal a higher prevalence of HIV among trans women sex workers compared with cis-gender sex workers and suggest that condomless sex for economic survival or as a result of sexual violence are important contributing factors.7 A small study from the UK showed a similar high HIV prevalence (37.5%) among trans sex workers, almost all of whom were trans women.8
With the widespread availability of condoms, the increasing adoption of treatment as prevention and the advent of pre-exposure prophylaxis (PrEP), we have entered a new era in which ending HIV transmission seems possible. Trans and non-binary people may experience particular challenges in accessing and adopting HIV prevention interventions. For instance, among trans women, poor mental health and gender-based violence can constrain their capacity to negotiate condom use.9 Furthermore, we have limited data on PrEP awareness, acceptability and uptake in trans and non-binary people. Some of the landmark PrEP trials have included trans women as participants, although many have either misclassified trans women’s gender identities or have not disaggregated data from trans women from those from men who have sex with men. A post-hoc subgroup analysis of data on 339 trans women in the iPrEx trial revealed a high number of HIV seroconversions in the intervention group, all linked to poor adherence.10 In this analysis, trans women who reported use of feminising hormones were less likely to have detectable drug levels.10 One of the only studies to date in the UK, a survey of 44 trans people testing for HIV at a sex-on-premises venue in London, found that over two-thirds reported no knowledge of PrEP or post-exposure prophylaxis, with many expressing concerns about cost, reliability and potential drug interactions with hormone therapy.11
We know that trans people experience significant barriers to accessing healthcare, including HIV care. The 2016 People Living with HIV Stigma Survey demonstrated widespread concerns among a small sample of 31 trans people living with HIV about being treated differently by healthcare providers across a range of settings, with substantial numbers avoiding healthcare as a result.12 Other factors that could potentially impact retention in HIV care and adherence to antiretroviral therapy (ART) among trans women include concerns about potential drug interactions between ART and hormone therapy, and the psychosocial factors outlined earlier.13 A recent case notes review of 32 trans women attending a clinic in London for HIV care found that nearly a third had taken a break from their ART, and that one-fifth had a detectable HIV viral load compared with 4% among cis-gender patients attending the general HIV service.14 In contrast, preliminary data from HARS have shown similar levels of virological suppression in trans and cis-gender people accessing HIV care in the UK (personal communication, P Kirwan, Public Health England, 3 May 2018). Further data are required to better characterise and understand the HIV care continuum among trans women in the UK.
Trans and non-binary people are key groups in the HIV epidemic, who may be at higher risk of HIV acquisition due to a complex interplay between biological, social and structural factors. Furthermore, those living with HIV may experience poorer outcomes across the HIV care continuum. However, we note the paucity of data on trans and non-binary people and HIV in the UK. PHE’s lead on trans data inclusion, including ongoing work in using non-binary gender categories, needs to be followed by other health services. We (RJ and ST) also look forward to publishing findings from our own qualitative study on the experiences of trans women living with HIV. Furthermore, forthcoming BASHH guidelines on the sexual and reproductive healthcare of gender-diverse populations are an important step towards ensuring quality of care. Finally, it is important to acknowledge the important work of CliniQ, the UK’s leading holistic sexual health and well-being service for trans people (https://cliniq.org.uk/).
In 2016, leading trans activist Juno Roche convened a meeting bringing together a wide range of stakeholders including trans people, advocacy groups, clinicians and academics to set an agenda for research into trans people’s sexual health in the UK.15 The group identified a number of research priorities as well as highlighting the significant barriers to participation in research including concerns about stigma, fears about drug interactions and experiences of discrimination within healthcare services. It is therefore critical that future research is conducted in partnership with trans people in order to address these concerns. It is time we acknowledge the significant gaps in our understanding of how HIV affects trans and non-binary people in the UK. It is time we count trans and non-binary people.
The authors thank the members of the Expert Advisory Group for Trans Health Research for their insights and expertise (Vanessa Crawford, Nick Douglas, Ian Green, Cheryl Gowar, Laura Mitchell, Juno Roche, Aedan Wolton).
Handling editor Jackie A Cassell
Contributors ST conceived the idea of this editorial. RJ and ST drafted the first version of this manuscript, with input from VD and KZN. VD provided data from PHE. All authors approved the final version of this manuscript prior to submission.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests RJ sits on the Advisory Board of the Terrence Higgins Trust and is a Trustee of Saving Lives. KN has previously received speaker honoraria from Gilead Sciences and Merck, Sharpe and Dohme, and acted in a consultancy capacity for Viiv Heathcare. KN is a trustee of the Clare Project (registered charity 1165746) which provides peer support services for trans and non-binary people in Brighton, UK. ST has previously received a travel bursary funded by Janssen-Cilag through the British HIV Association, speaker honoraria and funding for preparation of educational materials from Gilead Sciences, and is a member of the steering group of SWIFT, a networking group for people involved in research in HIV and women, funded by Bristol Myers Squibb.
Provenance and peer review Commissioned; internally peer reviewed.