Civil society influence on local HIV policy making in Karnataka, India

Abstract

Civil society has played a significant role in improving the health of poor and marginalized communities. Civil society organizations (CSOs) have been at the forefront of HIV prevention, treatment, care and support, and the promotion of rights of people living with HIV/AIDS (PLHA). In India, where approximately 2.1 million people live with HIV/AIDS, civil society has played a critical role in the response to the epidemic.

Conducted in the south Indian city of Bangalore between 2009 and 2010, this qualitative study aimed to explore the influence of civil society on local HIV policy making in Karnataka, India, with a particular focus on the role that PLHA play in civil society and in local HIV policy processes. The research sought to explore the relationships between civil society and the government and to understand the dynamics of HIV policy development in a multi-stakeholder environment. The study was structured in two phases, both drawing on data collected through participant observation, in-depth interviews, document reviews and fieldnotes.

Results indicated that civil society engaged in HIV/AIDS in Bangalore comprised diverse actors enmeshed in complex relationships influenced by identity politics, power relations, and trust and accountability issues. The relationships between civil society and the government were often characterized by hostility and fraught with frustration and sometimes fear. Despite such relationships, many CSOs were inextricably linked to the government due to funding partnerships. Findings revealed that notwithstanding the presence of significant barriers, PLHA attempted to maximize their opportunities for participation in civil society.

Local HIV policy making in Bangalore occurred behind closed doors, was dominated by the government and failed to adequately acknowledge the diversity of local community experiences, in particular that of PLHA. Policy participation was limited to a few governmentalized CSOs whose boundaries with the government were blurred. Failure to acknowledge local civil society’s experiences has contributed to dissatisfaction with HIV policies and hostile relationships between civil society and the government. Transparent, inclusive and participatory policy processes which consider local contexts can lead to improved local HIV policies that cater to community needs and better uptake of these policies by civil society and vulnerable community members.