From activism to secrecy: Contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014

Abstract

Background: Successes in biomedicine have transformed HIV from a debilitating and frequently fatal infection to a chronic, manageable condition. Objective: To explore how the contemporary metanarrative of HIV as a chronic condition is understood by patients and how it varies depending on when they were diagnosed. Design: Qualitative interviews with 52 people living with HIV who were diagnosed during different phases in the history of the epidemic. Setting and participants: Participants were recruited from two HIV clinics in London to include four “HIV generations”: generation 1 were those who had been diagnosed pre-1997 (pre-ART), generation 2 from 1997 to 2005 (complex ART), generation 3 from 2006 to 2012 (simpler ART) and generation 4 diagnosed in the year before the study (2013-2014). Results: Participants in all HIV generations took their medication as prescribed, attended clinic appointments and were well informed about their immunological biomarkers. While the pre-treatment generation had been engaged in community endeavours such as activism, public education and use of support groups, those more recently diagnosed had little experience of collective activities and their HIV was essentially a private matter, separate from their social identity. These strategies worked for some; however, those experiencing clinical or social problems related to HIV or wider issues often relied exclusively on their HIV clinic for wider support. Conclusion: The loss of public conversation around HIV, the imperative for patients to take on greater individual responsibility for HIV management and the streamlining of HIV services alongside reductions in ancillary support services may expose some people to suboptimal health outcomes.