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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.
In 2017, the Global Fund Board revised its Eligibility Policy, which sets out the criteria for which countries are eligible for financing. This chapter considers the impact of decisions made using those indicators, and explores debates over use of Gross National Income per capita (GNIpc) to determine aid eligibility. It also shows the role of civil society and community representatives in these high-level policy debates. Reviewing the Global Fund’s history, this chapter shows it was not the only donor wrestling with these problems of prioritization, and that in many countries the Fund was the last remaining external HIV donor to transition out. When some middle-income countries with concentrated epidemics among key populations saw multiple donors divest, programs for key populations, such as harm reduction, were at risk. In revising the Fund’s Eligibility Policy, the high-stakes contest was focused on a brief document of just a few pages, in which changing a single indicator could have sweeping consequences for countries such as Russia, where the Fund supported civil society advocacy for key populations. This chapter shows how three civil society delegations worked together to advance a shared position on the policy.
This chapter interrogates assumptions behind the models used both in cost-effectiveness analysis, and to set global targets. The models neglected to address how human rights realities, such as health sector discrimination and legal barriers, might undermine the optimistic scenarios the models predicted would result from scale-up of testing and treatment. The lack of quantitative research showing that addressing human rights would have a measurable impact on health, and that such work was cost-effective, meant that it was easy to exclude these and similarly unquantified considerations from biomedical scael-up. Thus in many countries, the work of addressing stigma, discrimination, criminalization, and gender inequality, while frequently cited as rhetorically important, is in practice an afterthought in planning, financing and implementing the HIV response. The second part of the chapter returns to Grenada to observe community activists and health officials wrestling with the challenges of quantification, as they debate which questions to ask in the study. While the global mathematical models aimed at simplicity in order to drive decision-makers to prioritize funding HIV programs, the CVC study wrestled with the problem of how best to capture local complexities and protect the fragile thread of trust they were beginning to establish with hidden communities.
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”.
In 2016, Venezuelans living with HIV asked the Global Fund to Fight AIDS, Tuberculosis and Malaria for emergency aid. But despite an economic catastrophe, Venezuela’s high national income made it ineligible. Data on HIV that might have helped was censored or had never been gathered. The public debate around this case highlighted the growing use of indicators and data in global health finance. Mathematical models had shown that ending HIV was achievable through rapid scale-up of testing and treatment to meet the Sustainable Development Goal of “ending AIDS” by 2030. But funding for the global HIV response has leveled off, and was not enough to meet the goals everywhere. Bilateral and multilateral donors were targeting funds where they could have the greatest impact, especially in Sub-Saharan African countries where HIV prevalence is high and national incomes low. Donors also needed to show progress to the politicians who approve their budgets. Yet how progress is measured through indicators and data is contested, including by civil society. As an example of how indicators can become sites of contest and levers of political power, the chapter examines Global Fund corporate Key Performance Indicators (KPIs) on lives saved, service coverage, and health systems strengthening.
Global health donors, under pressure to demonstrate progress in order to persuade US and UK government representatives to continue funding for the global HIV response, have intensified efforts to get more people at risk of HIV to test and know their status in high-prevalence regions, such as East and Southern Africa. PEPFAR, the US bilateral HIV financing program, has mastered doing this by using granular data to set priorities and manage funding. Women living with HIV in Kenya have raised concerns about the donor-driven practice of assisted partner notification services (aPNS), an approach in which those who test positive for HIV are required to share the contacts of their sexual partners with health workers, in order to inform those partners that they are at risk and should test for HIV. This chapter examines the delicate problem of eliciting disclosure of intimate partner violence safely and ethically, and how this is neglected in the academic studies on which the World Health Organizations based its recommendations. It shows that lack of evidence of domestic violence was used as evidence of lack of such violence, in order to promote donor-driven efforts to test more people for HIV.
This chapter recalls the author’s earlier visit to a Chinese compulsory drug detention center to explore covert civil society counter-surveillance of a tightly restricted facility under multiple rings of state surveillance, and to reflect on the limits of international regimes of monitoring and accountability. While torture and forced labor were widely reported, the facility’s manager presented it to the author as a model detention center. Ten years later, as senior human rights advisor at the Global Fund, which then invested in HIV programs in similar centers in Viet Nam, the author was tasked with developing a corporate Key Performance Indicator on human rights. The process of putting in place systems of compliance to ensure that aid money was not financing human rights violations became a public challenge. The chapter asks what can be known, from Geneva, about what really happens in places situated within multiple circles of top-down surveillance and display? By engaging in monitoring, civil society and development organizations attempt to engage in their own forms of surveillance and discipline. Sometimes, what they encounter is a Potemkin effect: a sunny display intended to deflect accountability and hide grimmer realities.
As global health agencies and donors shift their focus away from single-disease responses and towards the broader umbrella of universal health coverage, the advocacy movement that has achieved so much in the HIV response is now beginning to wrestle with finding new ways to reach out to and partner with broader and more diverse constituencies. Where to begin this renewal? The author suggests drawing on the example of the CVC study to expand forms of community mobilization that incorporate data-gathering through participatory action research, bringing together diverse grassroots constituencies to document and understand local needs, and to establish trust with marginalized and hidden communities. Richer data can reveal hidden realities which international organizations need for programming. At the same time, individuals can also use that same data to make institutions visible: their strengths and gaps, their rationales, assumptions and pressures, what the institution thinks counts, and what they may sometimes miss.
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.
This chapter returns to the CVC study in Grenada. Faced with pressure to complete their ambitious six-country size estimation study before their grant ended and donors transitioned out of the Caribbean, CVC focused its efforts on strong engagement of community field workers, who had the trust of their peers and could accompany them in overcoming the numerous barriers to participation. Working through networks of trusted community gatekeepers, CVC and local partners strengthened the role of community-based organizations in the research. The data was difficult to get, but the work of indigenous field workers enabled the researchers to gather granular data about previously undocumented populations including transgender people, as well as documenting incest and other hidden forms of gender-based violence, and to form stronger bonds between civil society and health officials.
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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