This dissertation research investigates barriers to access to medical treatment for epidemic diseases, with a particular focus on national and international agendas that determine the allocation of global health resources and the reasons inequalities persist even when resources are present. The investigators aim to examine (1) how new modes of governance are enabled through disease epidemics, and the ways this governance reconfigures claims for citizenship by infected populations; (2) how these claims for citizenship are mediated by state and non-state institutions that determine access to treatment; and (3) the political and moral logics that influence the implementation of the policy.
The aims of this study will be addressed through an ethnographic case study of the "Four Frees and One Care" policy for people living with HIV/AIDS in China. There are an estimated 700,000 people infected with HIV in the country, and approximately 190,000 people in need of antiretroviral treatment. Since 2003, the government has implemented this national policy, which provides free antiretroviral drugs, economic and educational assistance, and other benefits to infected populations and their families. The unequal implementation of this policy, however, enables some people to access these entitlements while excluding others from the same right. This research will employ ethnographic methods, including participant observation, interviews, and archival research.
This research will provide new insights into the global health governance of HIV/AIDS. It will also illuminate how moral politics intersects with and shapes the priorities of global health agendas. The findings from this research will deepen understanding of the relationship between epidemics, citizenship, and governance.
In 2003, China rolled out the Four Frees and One Care policy, the main framework guiding the treatment and care of people living with HIV/AIDS in China. Under this policy, individuals are entitled to (1) free antiretroviral therapy to rural residents or those with financial hardship in urban areas; (2) free voluntary, counseling and testing services; (3) free drugs to HIV infected pregnant women and testing for newborns; (4) free schooling for AIDS orphans. In addition to this national policy, most places have local policies designed to supplement these entitlements, such as subsidized health care and economic assistance. Using ethnographic methods, the findings from this research highlight the inequalities that emerge from these policies, and how these inequalities mediate access to resources. First, these policies prioritize the lives of people living with HIV/AIDS to the exclusion of other chronic and infectious diseases. In doing so, it creates an inequality that enables some people access to resources while marginalizing others. In certain rural communities, this prioritization has led non-infected people to redefine their identity into an HIV positive person in order to claim these entitlements, using different strategies of collusion. Second the implementation of these policies reflects a moral politics that give preference to certain HIV infected populations over others, based on how the virus was transmitted. For instance, policies in areas with a high concentration of people infected through blood transfusions are far more generous than in areas with men who have sex with men or injecting drug users. This distinction highlights a broader moral value assigned to different modes of transmission that, in turn, mediates access to entitlements. Third, international organizations are important in mediating local policies and allocating resources. In doing so, their beneficiaries must often perform their suffering, and non-suffering, in order to gain assistance. On the one hand, people living with HIV/AIDS must become victims to receive support; on the other hand, they must demonstrate their progress and empowerment to maintain it. Thus, this population must continually toe the balance to gain access to resources, excluding those that do not perform well. As a result, these organizations unintentionally reproduce inequalities that necessitate HIV positive people to continually rearticulate their positions. The intellectual merit of this project lies in its exploration of citizenship, politics and governance. This research examines the moral politics that inform citizenship and political rights, based not on membership to a nation, but to a disease. In certain communities, this membership will proffer entitlements that are marginal, and in some cases, denied to other populations. These distinctions and inequalities are built into the policies and serve as a form of social contract, thereby enacting governance on a population, and to wit, an epidemic. That is, in return for responsible behavior, these policies confer the promise of political recognition and protection. The broader impacts of this project attend to the politics that inform and underpin global health funding and prioritization of diseases, access to resources and affordability of treatment, are not immune to such politics, and often produce further inequalities between diseases and populations. These decisions are made in part by national governments and international institutions. In this regard, this project tries to understand the logics that inform their actions, and the implications these decisions have for broader global health governance.
