2.30 pm session Wednesday 16th November

In her session entitled 'Holding space for those who hold doubts', Christy Newman presented her qualitative research referred to as the 'ARV uptake study'.  Based on interviews with 27 people living with HIV around Australia who were not taking treatment, she explored their reasons for not starting nor taking it.  She found they had varied and usually well-considered reasons for not using ART, including difficulty access treatment due to immigration status, housing issues, having a 'cautious doctor', concerns about long term side effects, for instance. One participant had experienced a range of unpleasant side effects and had elected to stop treatment at the time of the study.

I believe this type of research is critical and we need more of it. In my experience too, people who choose not to take or to delay treatment are often ridiculed and begin to feel alienated, even from their own communities, as Christy also found in this small study.  She noted one person saying he felt 'invalidated' (by the HIV positive community) because he was not on treatment. But many are making a considered choice/decision, even if healthcare workers disagree with that decision; they may still require support, and should not be dismissed by services.

As Christy Newman noted in her presentation, 'taking a hard line on treatment can rupture shared points of connection' between health are workers and people living with HIV who are not on treatment.  I look forward to hearing more about this work.