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?”
Antiretrovirals making HIV feel more real
Generally, the interviewees were well-informed about recent developments in HIV medicine and could not be portrayed as being ‘anti-medicine’ or as ‘denialists’. Most were engaged with medical care and maintained constructive relationships with their doctors, some of whom agreed with their patients that starting HIV treatment was not necessarily an overriding priority at that point in time.
Many respondents were reluctant to start treatment for as long as they felt healthy and normal. They feared that they would not feel the same way if they began treatment. As a 46 year old woman who had been diagnosed for 15 years explained:
“If my results are trending down, I’m going to have to take meds and I will take the meds and I’ll be a hundred percent compliant. I know that they’re there to save our lives and they’ll prolong our lives. I’m just keeping that up my sleeve. I don’t think I need to be on them… I want to do everything I possibly can to delay that for as long as possible.”
Interviewees talked about the symbolic significance of starting treatment. For a recently diagnosed gay man in his fifties, it would
“mark a different phase of my life living with HIV… the reality of HIV kicking in.”
One woman said that one psychological benefit of not being on treatment was that she could disengage from HIV.
“Because I’m not on medications, I kind of forget I’ve got it... Look, admittedly, it probably will be something that reminds me daily of what I’ve got. So, at the moment, I can sort of sail along life quite easily and not sort of think about those sorts of things because I’m not on medications.”
Rather than seeing treatment as helping him keep HIV under control, this man felt that needing to start treatment would signify a loss of control, with the virus now having the upper hand.
“Not taking treatment... every year that’s passing by, I guess, it’s another year of keeping my head above water... I still have my natural immune system fighting and surviving, and that’s what is important for me.”
The authors note that while medications are usually understood as helping people feel healthy and well, in these accounts the drugs would make the illness feel more real. Treatment could reinforce respondents’ sense of being different and having an unwanted health problem, rather than being seen as something that could make them feel ‘normal’.
Marginalisation and silence
Almost all interviewees were aware of the evidence that HIV treatment reduces the infectiousness of people living with HIV and of the increasing policy emphasis on increasing the uptake of HIV treatment for this reason.
Indeed, participants described pressure from people around them to ‘do the right thing’ for the sake of the wider community, a call that brought about ambivalence and resentment. One man said that the treatment as prevention agenda stigmatised people living with HIV as a “threat to public health” in need of pharmaceutical control. As another said:
“I think that within that message is an implied message, from my perspective as someone who is positive, that I’m potentially irresponsible.”
Many interviewees had stories of being questioned or reproached by friends or family members. A 42 year-old man who had never taken treatment but had been diagnosed for 18 years and could be described as a long term non-progressor said:
“I found that I come up against a little bit of resistance and hostility when I’m talking to people, when people discover that I’m not on medication and I haven’t been for a very long period of time. Other people, you get a real variation of reactions, and I’ve had people tell me that, "You have no idea. You don’t know anything about this virus because you haven’t experienced it. You haven’t been what we’ve been through. You don’t know what you’re talking about."… It's all a bit unsettling because nobody deserves anything like that, but also people shouldn’t be made to feel guilty because they’re well.”
Time and again, interviewees 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.
“I don’t have any friends who are positive but not on treatment. I wouldn’t know where to find them, mainly probably because they do isolate just like me… There doesn’t seem to be any real sort of support for people who don’t take medication because when you mention it to people… they’re incredibly pro-medication and they’ll put you down.”
“I don’t openly tell anybody else that I don’t take the medication… I was feeling like a marginalised person within a marginalised group.”
The authors note that while the medications promise to reduce some of the stigma associated with HIV, individuals who do not take them find themselves marginalised in a new way, by the increasingly normative expectations and ‘responsibilities’ around HIV treatment.
Maintaining a dialogue
In a related article, Christy Newman, one of the co-authors of the study, comments that with the increasing focus on the benefits of HIV treatment, there are fewer opportunities for people with HIV to express their fears or concerns.
“This opens up important questions about how government and advocacy organizations can keep conversations about treatment use open and supportive, recognizing that consumers have rights to both access these lifesaving and preventive medicines and to hold doubts about them,” she says. “We need to ensure that the growing focus on treatment uptake avoids contributing to practices or perceptions of coercion, which risk forcing those with even minor doubts into stronger positions of treatment refusal and mistrust in the healthcare system.”
Persson A et al. On the Margins of Pharmaceutical Citizenship: Not Taking HIV Medication in the “Treatment Revolution” Era. Medical Anthropology Quarterly, 2016.
Newman CE. Appreciating doubts about HIV medicine. Journal of the International AIDS Society 18:20717, 2015. (Full text freely available online).