New Manifesto, No Data No More, Compellingly Analyzes HIV Research Gaps and Biases Against Trans and Gender-Diverse Communities

Embargoed for release: Monday July 19, 2021 at 11:00 ET / 17:00 CEST

Manifesto offers practical guidelines for change

Contact

Kay Marshall, +1 (347) 249-6375, kay@avac.org

Worldwide, trans and gender-diverse (TGD) people face a highly disproportionate burden of HIV but are frequently and often systematically left out of HIV prevention research and responses. That ongoing exclusion is a major barrier to efforts to end the global HIV pandemic, according to No Data No More, a new HIV prevention manifesto written by TGD advocates from South Africa, Europe and the United States, with support and solidarity from AVAC. The embargoed report and materials are available here.

No Data No More analyzes how TGD communities are left out of HIV prevention research and responses through structural barriers such as discriminatory attitudes and punitive laws, non-inclusive language, failure to recognize the diverse and unique identities of different members of TGD communities and a lack of understanding of the role of gender-affirming hormone therapy (GAHT) in TGD health.

“Whether through ignorance or bias, the engagement of trans and gender-diverse people in HIV research and responses continues to fall behind the devastating impact of the pandemic on our communities,” said Tshepo Ricki Kgositau of Accountability International. “No Data No More presents a clear analysis of these obstacles from the perspective of those directly affected, along with concrete recommendations to enhance global HIV prevention by making TGD communities an essential part of the response.”

The need for change in HIV research and prevention for TGD people is clear. Trans women, for example, are 49 times more likely to be living with HIV than the general population. HIV prevalence among trans men in the U.S. is a startling high 3%, and reaches 38% in some communities, such as among trans male sex workers in Zimbabwe. And data on HIV impact on gender nonbinary people, which may make up 25-30% of trans populations, is virtually nonexistent.

Yet TDG communities continue to be underrepresented in or excluded entirely from HIV prevention research and programs. To date, no HIV-primary endpoint trials have focused specifically on transgender individuals. The number of TGD participants in efficacy trials has historically been too small to derive statistically significant data. And trans and gender diverse researchers and community members are often excluded from positions of power in trial design, prioritization, funding and analysis.

“The gap between the extremely high impact of HIV on TGD communities and the extremely low level of engagement of our communities in HIV research and responses can only lead to more infections and a prolonged epidemic,” said JD Davids of JD Strategies and The Cranky Queer Guide to Chronic Illness. “No Data No More is a global wake-up call for HIV prevention researchers, funders and program implementers.”

“Some laudable efforts, such as those led by NIAID’s Cross-Network Transgender Working Group, are important steps forward in increasing trans representation in research,” said Immaculate Mugo, consultant on gender, intersectional sexual & reproductive health and rights. “Globally, however, too much research and too many HIV prevention access efforts are informed by only a passing knowledge of or interest in TGD communities and issues, and most lack real participation from TGD individuals and leaders. The result is an epidemic that continues to disproportionately affect TGD people worldwide.”

No Data No More provides a vision for a relevant and inclusive TGD research agenda that can change that trajectory. The manifesto includes clear and practical recommendations to:

• Track epidemiological data on HIV incidence and prevalence that accurately reflects the large and growing HIV acquisition rates of TGD populations.
• Support best practices in language use, informed by TGD researchers, advocates and trial participants.
• Address fundamental structural barriers that limit TGD people’s access to HIV research and prevention.
• Provide GAHT across the HIV research, prevention and care continuum, resolve existing questions about potential interactions between HIV PrEP and GAHT and ensure future studies address potential interactions between HIV prevention products and GAHT.
• Improve TGD-inclusion in randomized clinical trials and ensure that these recognize, address and evaluate the impact of differences among sub-groups of TGD people.
• Include TGD leadership in clinical research, including study design and implementation.
• Fund and strengthen the capacity of local research sites to recruit TGD participants in alignment with the Good Participatory Practice Guidelines.

“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,” said Max Appenroth of Global Action for Trans Equality (GATE). “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.”

“AVAC is proud to support the development of No Data No More as part of our ongoing commitment to inclusive, representative HIV research and the Good Participatory Practice Guidelines,” said AVAC Senior Manager for Partnerships Cindra Feuer. “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.”

###

About AVAC: Founded in 1995, AVAC is a non-profit organization that uses education, policy analysis, advocacy and a network of global collaborations to accelerate the ethical development and global delivery of HIV prevention options as part of a comprehensive response to the pandemic. Follow AVAC on Twitter @HIVpxresearch.