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The key populations who are most vulnerable to HIV – sex workers, people who inject drugs, men who have sex with men, transgender people – are criminalized in many countries, and often lead double lives, hiding in order to survive. This creates a data paradox, in which governments deny or minimize the existence of key populations, no research is done on their health needs, and lack of data reinforces official denialism. Criminalization of same-sex sexuality is statistically associated with implausibly low size estimates of men who have sex with men. Low size estimates can also contribute to implausibly high reported coverage of HIV testing among men who have sex with men, leading countries that are failing to reach key populations to mistakenly believe they are successful. In Kenya, a government effort to conduct a size estimation study of key populations, including gathering biometric data, faced resistance from those groups, who feared the data could expose them to risk of arrest and abuses. Working with Kenyan key populations advocates and human rights lawyers, the author documented this resistance, and growing demands by key populations that they play a leadership role in the design, implementation and evaluation of research about their health.
To understand how community leadership can be incorporated in health research, this chapter tracks the first stages of a population size estimate in six Eastern Caribbean countries, with a focus on one of the countries, Grenada. Grenada is a small island state and an upper-middle-income country. While external aid previously funded much of the region’s HIV response, global health agencies are transitioning out to prioritize reaching the “end of AIDS” in high-prevalence, lower-income countries. However, criminalization and discrimination contribute to lack of resources for key populations in middle-income countries. In Grenada, abrupt US aid withdrawal left community groups dormant, without funding or staffing. In past studies, after the data was extracted, local groups saw no results of the research. A regional civil society group, Caribbean Vulnerable Communities (CVC), will lead this new population size estimation study. An ethnographic study of the CVC study highlights the challenges with finding and counting hidden key populations. CVC must restart old networks and rebuild trust. The activists negotiate for power and control of the data, using their arduous research to position revived community groups at the center of national HIV responses; hoping that the research will produce “something more than just data”.
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