Manifesto to Align HIV Prevention Research with Trans and Gender Diverse Realities
No Data No More provides a vision for a relevant and inclusive trans and gender-diverse (TGD) research agenda, offering public recommendations to finally fulfill an inclusive HIV research future where TGD people flourish in all our diversity.
A TGD-inclusive research agenda is long overdue.
Trans women bear a disproportionate burden of HIV globally with 20 percent living with HIV—66 times greater than the general population. Trans masculine people have a global prevalence of 2.6 percent, seven times greater than the general population, however, they are woefully understudied and the absence of data leads to a false assumption that they bear little to no burden of the virus. Gender nonbinary people face even greater underrepresentation in HIV surveillance and research and related syndemics (the confluence of two epidemics with the potential to worsen outcomes for both). Efforts to bring an end to the global HIV pandemic will fail if effective, accessible HIV prevention interventions don’t reach TGD communities. Yet TGD people—who often face crushing stigma, marginalization, criminalization and violence, along with a disproportionate burden of HIV—continue to be overlooked, underrepresented or excluded altogether from HIV prevention research and programs. Though there’s been some TGD-inclusive scientific literature and trans-led research, it falls gravely short of what’s needed.
About the Project
The manifesto is the foundational tool advancing AVAC’s trans and gender diverse advocacy. It lays out a detailed vision, outlining practical and essential priorities to HIV researchers, site-level staff and funders. The No Data No More Manifesto puts forth over two dozen recommendations for researchers and advocates to ensure the acceleration of trans-inclusion in research—both clinical trials and implementation studies. It also calls for the dismantling of social, legal and economic barriers that prevent TGD people from accessing healthcare and other rights to fulfill a dignified life. Ongoing engagement, consultation and convenings with these stakeholders and people from the trans and gender diverse community includes:
- The Manifesto Roadshow: a series of dialogues with TGD people, funders, researchers, program implementers, regulators and community networks to accelerate and coordinate efforts for trans inclusion in research.
- Trans-Inclusivity Scorecard: An analysis of trans representation in key HIV trials since 1991 and a template for scoring future trials. Offered to researchers and community advocates alike to inform trial design.
- TG ROAR: (Research, Outreach, Advocacy and Representation) is an AVAC program populated with trans and gender-diverse people from Southern and Eastern Africa. ROARers use the Manifesto as its advocacy North Star, guiding trans-inclusive research as well as gender justice at the local and national levels.
- 15 Roadshows (as of Jan 2023) with community, implementers and researchers.
- Scorecard advocacy template available Q3, 2023
To learn more about the manifesto and our work, contact Cindra Feuer at email@example.com.