In the fight against HIV, data is becoming a critical stake in the struggle. My new article in the International Journal of Human Rights explores how in the global HIV response, data invisibility for hidden populations fuels inequality – and how some hidden populations are fighting back. 

The article, part of a special issue on human rights in the Sustainable Development Goals (SDGs), explores a tension between the hidden nature of HIV-affected key populations (such as men who have sex with men, sex workers, transgender people, and people who inject drugs), who often choose invisibility to avoid stigma, arrest and violence; and the need to count those populations in order to direct financing and urgently-needed medical services to them. Data is also essential for countries to show progress towards the SDG on health.

To do this, global health agencies such as UNAIDS, the Global Fund to Fight AIDS, TB and Malaria, and PEPFAR all use HIV data reported by countries. But this data is not produced in a political vacuum. When criminalization drives key populations underground, the lack of data about their needs creates spiraling inequality. Key population size estimates are an important metric for planning and financing national and global HIV programming, but they become hard to obtain in contexts of political denialism and high risk.

Pressure from health financing agencies is changing these power dynamics in some countries. Key populations who participate in global health financing consultations question size estimates, interrogate the politics of HIV data, and demand that studies be more inclusive, ethical and attuned to their human rights.

Following on this article, I’m now doing ethnographic fieldwork to observe and document a key population size estimate that takes a community participation approach. More on that soon.