This article previously appeeared on HIV Update, a publication of aidsmap, here.
Two recent studies shed light on the experiences of people who have chosen not to take HIV treatment or who have had difficulties taking treatment regularly. Researchers have called on clinicians and policy makers to pay more attention to the experiences of people who have fears or concerns about HIV treatment.
In an Australian study, some people were reluctant to start treatment for as long as they felt healthy and normal. They worried that starting treatment would make HIV feel more real rather than lessening its impact. The interviewees were aware of the evidence that HIV treatment reduces the infectiousness of people living with HIV and described feeling pressurised by friends and professionals to take treatment and ‘do the right thing’ for the sake of the wider community – a call that brought about ambivalence and resentment.
These people who had decided not to take treatment often said that they did not know anyone else who had HIV and was not taking treatment. They felt marginalised and silenced within groups of people living with HIV and by HIV support organisations.
In a separate study, researchers interviewed west African women living in London who had had difficulties adhering to their HIV treatment. Internalised stigma about HIV was an undercurrent in many of these women’s accounts, with some women feeling as negatively about the medications as about the illness they are used to treat. Several described HIV treatment as making them feel they were trapped in a monotonous life sentence. As one woman said, “They will tell you that you have to take it. It’s the words ‘for life’ I hate, I can’t stand it.”
But some interviewees talked about how their adherence and their health had improved, citing the support of family members and of doctors who treated them as equal partners. The researchers say that healthcare staff should educate patients about how HIV treatment works and fully involve them in decisions about treatment. They also say that, when possible, it’s helpful for people living with HIV to be open about their HIV status to friends and family, so that they are not isolated and can get support.