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People not taking HIV treatment feel under pressure to ‘do the right thing’
Roger Pebody, 2016-04-13 08:20:00

Australian people living with HIV who have chosen not to take antiretrovirals and who have doubts about HIV medicine report feeling excluded and silenced within HIV organisations and communities, according to a qualitative study published online ahead of print by Medical Anthropology Quarterly.

In general, the interviewees did not deny the benefits of antiretrovirals, but did not yet feel ready to make a commitment to start a lifelong regimen of medication. They were aware that good adherence is vital but may be challenging, and also of the potential of all prescribed medications to do harm as well as good. Given these concerns and hesitations, pressure to take treatment for the benefit of the wider community did not sit easily with the interviewees.

Asha Persson and colleagues from the University of New South Wales designed a study which aimed to understand the views and experiences of people not using HIV treatment at a time of growing policy emphasis on treatment uptake. They conducted in-depth, qualitative interviews with 27 people living with HIV who were not taking HIV treatment at the time of their interviews (conducted between 2012 and 2014). While ten interviewees had never taken HIV treatment, the others had previously done so for a short period of time or for a specific purpose, such as pregnancy. The sample included 19 gay men, four heterosexual women, three heterosexual men and one bisexual man.

Persson examines the interviewees’ stories in the context of the anthropological concept of ‘pharmaceutical citizenship’. According to this concept, pharmaceutical medications are seen as having the promise of allowing individuals to fully participate in society, in other words to be more active citizens. People who may have been marginalised by poor mental health, physical incapacity, infectious disease or a stigmatised health condition can be re-integrated.

To give an example of pharmaceutical citizenship related to HIV, a previous study showed how an awareness of the impact of HIV treatment on prevention was helpful for couples in which one person has HIV and the other does not. Anxieties about the risk of HIV transmission were receding, allowing the couples to experience their relationships as ‘normal’ and safe.

But with antiretroviral treatment for all people with diagnosed HIV increasingly becoming the norm, it may seem that accessing medical care is not only a right, but also a social obligation. The authors ask:

“What are the implications for citizenship and people’s sense of inclusion if they decide not to take HIV treatment? … What kind of subjects and citizenship take shape when people with treatable diseases such as HIV refuse, desist, or delay taking recommended medication?”