Tired of Being Excluded from HIV Research, Transgender People Issue Manifesto 
Max Appenroth of Global Action for Trans Equality (GATE)

Almost one in five trans women globally are living with HIV – 49 times greater than the general population – while HIV in trans men is woefully understudied. 

Yet trans and gender-diverse (TGD) people are “frequently and often systematically left out of HIV prevention research and responses”, according to No Data No More, a global HIV prevention manifesto launched on Monday with the support of the non-profit HIV prevention organisation, AVAC.

“Forty years into the global HIV pandemic, which is endemic to most trans communities, it’s beyond time to align HIV prevention research with trans and gender-diverse realities,” Max Appenroth of Global Action for Trans Equality (GATE), told the launch.

“The best way to reduce HIV in TGD communities is to invite our communities to participate meaningfully in the response. The ‘No Data No More’ manifesto is an invitation to recognize the fundamental and critical role that empowered TGD communities can play in protecting our own wellbeing and reducing the global toll of HIV.”

Warning to Academia

Even when TGD people are included in research, they are considered as subjects rather than collaborators with agency, according to Leigh-Ann van der Merwe, from the Social, Health and Empowerment Feminist Collective of Transgender Women in South Africa.

“I want to caution academia that transgender people are no longer willing to be recruited as as data collectors only,” said Van der Merwe, adding that transgender people needed to be included in all the various stages of decision-making from research design, to implementation and dissemination.

The manifesto, which was written by TGD advocates from South Africa, Europe and the United States, argues for an HIV TGD research agenda that “considers diversity, including the full range of participants along the gender spectrum” and accurately tracks epidemiological data on HIV incidence and prevalence in TGD populations.

Immaculate Nyawira Mugo, consultant on gender, intersectional sexual and reproductive health and rights in South Africa, also called for more research into drug interactions between gender-affirming hormone therapy and antiretroviral drugs, including ARVs taken to prevent HIV as pre-exposure prophylaxis (PrEP)

“Much work remains to make the perspective and participation of trans and gender diverse communities central to HIV response, but this manifesto charts an essential path forward for researchers, advocates and implementers worldwide,” said AVAC Senior Manager for Partnerships Cindra Feuer.

The manifesto was launched in association with the International AIDS Society’s Conference on HIV Science which started on Sunday and runs until Wednesday.


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