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HIV and trans and non-binary people in the UK
  1. Rusi Jaspal1,
  2. Kate Zoe Nambiar2,
  3. Valerie Delpech3,
  4. Shema Tariq4
  1. 1 Faculty of Health and Life Sciences, De Montfort University, Leicester, Leicestershire, UK
  2. 2 Brighton and Sussex University Hospitals NHS Trust, Brighton, UK
  3. 3 Department of HIV and STI, National Infection Service, Public Health England, England, UK
  4. 4 Institute for Global Health, University College London, London, UK
  1. Correspondence to Dr Shema Tariq, UCL Institute for Global Health, London WC1E 6JB, UK; s.tariq{at}

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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 …

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  • 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.