The hope that years of strife and stand-off may be giving way to a more inclusive and participatory Aids policy cannot come a moment too soon.
It is particularly important to ask how the mixed messages of the government and its conflicts with civil society exacerbate fears and beliefs about antiretroviral (ARV) treatment. And, how does this confusion manifest itself in communities and among people living with Aids?
A necessary starting point to reverse confusion is to provide accessible, unambiguous and consistent information on treatment, as well as involving the broader community in treatment issues.
In one semi-rural community outside Tshwane, it is easy to gauge the palpable level of uncertainty surrounding ARVs. “Eh! Some of the people are scared of treatment because if you spoke to someone and say let us go and get some treatment they will pretend as if they take it and stop,” said one woman living with Aids.
Some throw ARVs away because of pressure from relatives or gossip that says ARVs kill. A woman who recently buried her neighbour told how she discovered a cupboard full of ARV tablets, still sealed. ARVs have themselves now become a signifier of Aids, marking someone as infected. Some people are deterred from approaching the public sector ARV clinic because “they were scared that some would look at them and say their lives are over”.
The result is that many only approach the clinic when they are already in an advanced stage of Aids. This is often the first time they receive unambiguous information on ARVs. There are also fears about side effects and lifelong treatment, as well as being encouraged to disclose their status and generally having “to do a lot of things [preparation]” prior to receiving treatment from the clinic.
Stigma is also present in the home: “Sometimes at home they see the tablets you are taking … they start to comment, ‘Why are you taking so many pills? What is wrong with you?’ and all the things like that and there is nothing you can do.”
Taking medication is especially difficult where people have not disclosed. Many spoke of taking ARVs in secret or devising strategies, such as removing ARVs from the original packaging and concealing them in containers.
Those who had disclosed to friends, family or colleagues reported a more supportive environment was more likely, but not guaranteed. One person living with Aids described commencing ARV treatment: “It was a gamble. Actually, I put my life at stake. Because I didn’t know exactly the ARVs was gonna help me or is going to make my condition worse.
“I said it is better I put my life at stake as I have put my life at stake before. They took blood [at a hospital four years ago] then they told me that [I should] ‘go and die’. You see. So I risk again going for ARVs.”
One obvious source of information on ARVs should be the local community radio station. But a radio presenter, with a weekly slot on Aids-related issues, told me that it was currently addressing “alternative medications” as the local hospital had not given permission for the previous head of the clinic to promote ARVs on the radio. Instead air time was being bought through sponsorship and advertisements for herbal remedies and immune boosters.
Respondents were split on the desirability of mixing traditional and ARV medication, but many openly expressed support for and personal use of traditional herbs with ARVs: “I think that most of the times many of us take ARVs and mix them with other treatment. How about we find someone to come and clarify to us? I was told that you are not supposed to mix, [but] some mix.”
These beliefs may be exacerbated by mixed government messages on traditional remedies and the nutrition versus ARVs debate, but they would certainly exist regardless. The dangers of this practice were recognised by people living with Aids, one of whom mentioned 10 acquaintances that mixed ARVs and herbs: “I can tell you and assure [you] that all those people are no longer existing. They are dead, they passed away.”
Since June this year six people at one local community Aids hospice died, apparently as a result of mixing medication and/or interrupting ARV use. These deaths reinforce negative perceptions concerning ARVs.
It is a shocking indictment of the state of official stewardship of the epidemic that such levels of confusion and apprehension exist in this community. If ever there was a fitting testament to all the years lost while waiting for a concerted and unified response, then surely it lies in this community’s lack of freedom to take ARVs. As one person living with Aids so tellingly put it: “They are not free, they are not free.”
Peris Jones is a visiting research fellow at the Centre for the Study of Aids, University of Pretoria. This article is based on a research project on perceptions of and access to ARVs