Academics launch UK's first study of trans women living with HIV

Trans women living with HIV in the UK are being urged to take part in a new study aimed at improving health and wellbeing outcomes in this community.

The EXTRA (EXperiences of TRAns women living with HIV) Study is the first ever UK study to explore HIV-positive trans women’s experiences of living with HIV. It is being led by Professor Rusi Jaspal of De Montfort University Leicester (DMU) and Dr Shema Tariq, of University College London (UCL), who also co-chair the newly formed Expert Advisory Group on Trans Health Research.

Professor Jaspal and Dr Tariq teamed up with writer and trans HIV campaigner Juno Roche, also a member of the Expert Advisory Group, to make a new video that publicises their research study and reaches out to the trans community.

They are eager to address the gap in knowledge around HIV outcomes in trans communities, but stress the importance of working in partnership with these communities to achieve real change. More generally, they hope that the video, produced by Fox & Owl Fisher, will help raise awareness of HIV research in trans communities.

Global studies suggest that trans women are at higher risk of HIV infection than other groups in society – with some studies indicating that they’re up to 49 times more likely to be HIV-positive than the general population. However, there is no data on HIV risk in trans women in the UK. Preliminary interviews conducted by Prof Jaspal and Dr Tariq provide some insight into the epidemiological, social and psychological factors that might increase HIV risk in trans women and undermine HIV outcomes in trans patients.
Trans women may be more reluctant to visit their GP or sexual health clinics due to fears that they will face prejudice and stigma, and public health awareness-raising campaigns around HIV, testing and safer sex have generally neglected trans communities.

Also, some trans people may worry about adverse interactions between hormone replacement therapy and HIV medication, leading to disengagement from HIV care.

Prof Jaspal said: “Our research has uncovered challenges in HIV prevention and treatment that may be specific to trans communities, which need to be addressed to aid prevention efforts and to improve outcomes in those living with HIV. Our research aims to inform policy and practice in HIV medicine.

“We need to understand why trans women may not be testing for HIV regularly. Many of our participants were diagnosed with HIV when their immune system was already severely compromised, which we know can have a negative impact on disease prognosis. We need to understand why that is happening.”

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Dr Tariq, a Clinical Research Fellow and Honorary HIV Consultant , said: “We need to know what good care and good prevention might look like. For that we need to do the research. It’s only through talking to trans women and working together that we can make real change.”

The video was supported by #DMUlocal, which works to share the expertise of DMU students and staff to help communities, and by the Terrence Higgins Trust, a British charity specialising in HIV and sexual health.
* Are you a trans woman living with HIV? If you would like to take part in this study, Prof Jaspal and Dr Tariq would love to hear from you. Please get in touch by emailing or or call Prof Jaspal on 0116 2577109, or via Twitter @ProfRJaspal. Dr Tariq can be reached on or 0207 6797617 or on Twitter @savoy__truffle

Posted on: Wednesday 20 September 2017

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