Beyond the discourses of policy and power: HIV, AIDS, and community perspectives on the lived pandemic

Abstract

As HIV unfolded in the 1980s, HIV and AIDS were heard and seen through the lives of those whom it touched directly. Personal histories were foregrounded, centred by the inevitable mortality attached to HIV infection, the courage of circumstance in the face of illness, and the activism necessary to make a difference. In the later part of the decade, the impacts of HIV were most apparent in East Africa, where community responses and political leadership coalesced to reduce new HIV infections. The 1990s marked a turn towards centralised policy, funding, and the reification of biomedically oriented approaches and systems that are intrinsically top-down. This biomedical turn centred on foregrounding the widespread availability of low-cost antiretroviral therapy and was articulated in the 90-90-90 and subsequent targets. Biomedicalisation reinforces individualised approaches to health primarily focused on biomedical technologies and health service provision that do not rely on community or social organisation formats. Emphasis on HIV treatment, along with the promise of reduced HIV transmission through viral load suppression, contributed to limiting socio-behavioural approaches to HIV prevention. While the importance of community-led response was highlighted in the 2016 United Nations Political Declaration on Ending AIDS, community-led response has devolved towards concepts such as community-led monitoring and community-led response that frame responses in direct relation to the dominant biomedical paradigm. There are lessons in the history of the AIDS response that demonstrate that communities formulate responses to AIDS differently when there have been opportunities for community members to determine the pathways for action to address HIV independently. Older research studies offer retrospective insights into moments in the history of HIV when communities were foregrounded and highlighted the need to reconsider the current trajectory of the HIV response. Not only for history’s sake but to acknowledge that community leadership remains overwhelmed by elites. While lofty targets and goals drive the contemporary HIV response, the way forward is mired by uncertainty. HIV prevention efforts remain uneven, and millions of people living with HIV depend on access to treatment for decades to come in the context of budgetary uncertainties. Changing the course of AIDS will not be achieved if we fail to ensure that communities occupy a genuine and unambiguous place in shaping HIV response.