“Sometimes I am working in other places when my clinic date comes and you can’t keep telling your employer that you have to take a day off”
Today in South Africa around 2 million people living with HIV are still not on lifesaving ARVs — some people not knowing their HIV status, others knowing their HIV status but not having started treatment, and worryingly many many people having started on treatment and then stopped. For people who travel, or for people who relocate, getting your ARVs can turn into a nightmare. It might mean being forced to be late for an appointment, and being scolded when you go back. Or it could mean being refused ARVs until you go back to your original clinic to get a transfer letter, often hundreds of kilometres away. This is another reason why TAC will be marching on 1 December to demand 6 month ARV refills for all stable people living with HIV. Getting a 6 month supply of ARVs would help frequent travellers like Mercy* from the North West, who explains the difficulties in collecting ARVs while being on the road for work — and for other people she knows who have left the province for job opportunities in Gauteng.
Diagnosed and initiated on ARVs in 2007, Mercy has come a long way with HIV treatment.
For the North West local who uses Itsoseng Clinic in the province, she says a next hurdle is to get stable people onto a 6 month supply of their ARVs.
“I’m now on a 3 month supply, but this is still not helping that much. Sometimes I am working in other places when my clinic date comes and you can’t keep telling your employer that you have to take a day off every three months,” says Mercy.
She says currently clinic visits are a check of her vitals before being issued a script to pick up medicines at an external pick-up point. The external pick-up points she says have helped a lot, but she says going for vitals checks doesn’t have any real benefits for her.
“If I am sick or not feeling right, I will anyway go to the clinic, so I don’t think those checks help us,” she says.
Mercy says that many people in the North West have to leave the province to look for work in nearby Gauteng, so being expected to travel long distances to their clinics at three-monthly intervals is expensive and time wasting.
“Many people don’t have transfer letters, so they are supposed to come back to their clinics here in the North West and it is a big challenge when you don’t have a job,” she says.
Her other issue she says is that there is not enough treatment literacy. She says better treatment literacy would allow more people to manage their treatment regimens better and this would help them be more stable on their medication. This she believes would mean more people living with HIV can move to 6 monthly ARV collections.
“I have been on my treatment for a long time so now I know, but I can see that many people are confused. Even when the clinics change the tablets or the containers it’s confusing, but the nurses don’t answer people’s questions. There are those who will take the medicine home, but they don’t drink the pills because they aren’t sure about what they were given,” says Mercy.
ARV treatment is a lifelong adjustment, she says, and she adds that people need to be supported.
“I was 34 when I was diagnosed, and I had to learn to accept myself and that this would be treatment for the rest of my life. I also had to tell my children who were still small then. I got support from some doctors and nurses and from my cousin at that time and that was what really made the difference. People need more of that these days,” says Mercy.
* Name changed to protect identity
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