The Uncounted: Politics of Data in Global Health

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.