Introduction Improvements in treatment and life expectancy have led to HIV being increasingly regarded as “just another chronic disease”. We hypothesised that the experience of being diagnosed and starting treatment for HIV would have changed over the decades of the epidemic to reflect this normalisation.
Methods Qualitative interview study of 52 people attending two large HIV clinics in London, purposively sampled to include people diagnosed in “generations” from 1980s to 2015, analysed using framework approach.
Results Despite the improvements in antiretroviral therapy (ART) and life expectancy over the last 3 decades, the experience of receiving a diagnosis of HIV remained strikingly similar across the generations, being one of shock and fear of death, recalling thinking that “this is the end” or that “my expiry date was stamped on me now”. This did not vary with level of knowledge or experience of having previous HIV tests. In contrast, the decision to start ART was more complex in the early days when potential gains had to be weighed against side effects and depended on clinical monitoring. For those diagnosed in the 1980s and 90s, it was often seen as a defeat “I fought it all this time on my own, and then finally I had to give in and take a pill. That was kind of depressing”. But in the last decade the decision although easier in some ways was still a major event. People across the generations reported being worried about accidental disclosure through taking medications, fear of the short and long term side effects, and described how taking daily medications became a constant reminder of their HIV status; one participant described starting medication as “worse than being diagnosed” .
Conclusion HIV may appear as “just another chronic disease” to some clinicians, but for people being diagnosed and invited to start treatment these are major life events, as they are for many chronic conditions. To ensure good linkage to and retention in care, clinicians should acknowledge this and facilitate appropriate support.