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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.
The pressure on health donors and aid-dependent governments to reach the end of AIDS has been managed in part through the rising dominance of discourses and tools grounded in cost-effectiveness. This chapter analyzes cost-effectiveness tools used to prioritize HIV financing at the national level, and finds that the tools can be a double-edged sword for marginalized communities and interventions. While cost-effectiveness analysis can be used to make a case for prioritizing investment in HIV services that reach key populations, these tools can also be used to reinforce epistemological exclusion of those populations due to lack of quantitative data that demonstrates their needs. Cost-effectiveness is sometimes also used to exclude other values, principles, and knowledge produced through qualitative methods. This chapter examines how cost-effectiveness analyses play out for key populations in some national investment cases, and explores whether human rights norms offer alternative principles of decision-making. It finds that while cost-effectiveness analysis can contribute towards ensuring that states fulfill the right to health, if not explicitly balanced against other human rights principles, cost-effectiveness may reinforce neoliberal values and a model of the market in which small, marginalized populations are set up to lose the competition for prioritization.
In the global race to reach the end of AIDS, why is the world slipping off track? The answer has to do with stigma, money, and data. Global funding for AIDS response is declining. Tough choices must be made: some people will win and some will lose. Global aid agencies and governments use health data to make these choices. While aid agencies prioritize a shrinking list of countries, many governments deny that sex workers, men who have sex with men, drug users, and transgender people exist. Since no data is gathered about their needs, life-saving services are not funded, and the lack of data reinforces the denial. The Uncounted cracks open this and other data paradoxes through interviews with global health leaders and activists, ethnographic research, analysis of gaps in mathematical models, and the author's experience as an activist and senior official. It shows what is counted, what is not, and why empowering communities to gather their own data could be key to ending AIDS.
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