More than 600 people march to demand longer supply of ARVs for people with HIV
East London, 1 December 2024 — To mark World AIDS Day, today hundreds of members from the Treatment Action Campaign (TAC) will take to the streets in East London to demand 6 month ARV refills for all stable people with HIV.
In South Africa, around 2 million people living with HIV are still not on lifesaving HIV treatment — some people not knowing their HIV status, some people knowing but not having started treatment, and worryingly many many people having started on treatment and then stopped.
“The dysfunction in our clinics is a key reason that people stop taking their ARVs,” says Sibongile Tshabalala, TAC’s National Chairperson. “We leave home in the early hours of the morning, only to wait all day to be seen. Our files take hours to find or go missing completely. If we are late for our appointments, we can be shouted at and sent to the back of the queue as punishment. If you don’t have a transfer letter or an ID, or if you are a member of a key population you can be refused ARVs altogether.”
A simple solution exists to reduce the frequency of clinic visits — for people who are collecting ARVs to simply get a longer supply of medication. A longer supply of ARVs would mean fewer trips back to the clinic just to collect medicines. It would make it easier to stay on treatment by reducing the cost of getting to the clinic and the hours spent waiting every year. Importantly it would also reduce congestion and overall waiting times for everyone using the clinic, and reduce the burden on already overstretched healthcare workers.
A person living with HIV from Mpumalanga explained to us the disruption of getting a day off work each time she has to go to the clinic, saying: “Clinic appointments take up a lot of your time. On my appointment date I have to be up at 5am to get to the queue… we queue for vitals and then you have to queue again for collection. I only come back home by 1pm.” She told us that getting a 6 month supply of ARVs would be helpful for people and also for nurses. “I think it would help release more stress to the nurses.. this would release them by reducing people coming to the clinic unless they are sick.”
A TAC member who is unemployed in Limpopo explained to us how a 6 month supply would help him significantly cut the cost of travelling to the clinic: “From my place to the clinic is too far, so I have to catch three taxis there and three taxis back and I can’t afford it. I am owing people money now because I have to borrow money to go to the clinic every time to fetch my ARVs”.
A trans woman living with HIV from the Free State also explained the difficulty in choosing between a job or collecting pills: “Sometimes I get piece jobs, which I rely on a lot for income, but if I have a clinic date then I have to decide to miss the date or say yes to the job – but if I could get a 6 month supply of my ARVs then I wouldn’t have to worry about this”.
Bellinda Setshogelo is a TAC member from Gauteng who has been on ARVs for more than 16 years. She told us: “Having to go to the clinic every second month, waiting for hours to be seen, and being told I will be seen last when I am late for my appointment is what is unpleasant about getting a shorter supply. I am often late because I travel to different provinces working for TAC. When I return to the facility I’m given an attitude… I’m told how I’m not serious about my life before my side of the story can be heard. If I could get a 6 month supply it would mean me going to the clinic less and having to deal less with the attitude of the clinic staff. Besides, I’m tired of frequenting the clinic. There are many people who are ill who need the attention of the health workers, instead of me spending the whole day there just to get my pills”.
For another person we spoke to in the Eastern Cape, fewer clinic trips would also reduce frustration and irritation. She said “The clinic staff don’t always treat you right. They are very stigmatising especially to us sex workers. Also, all the people who are collecting ARVs have to go to this one container so everyone at the clinic knows you are HIV positive – there is no confidentiality.” She explained how a 6 month supply for stable people would mean she would have to prepare herself for feeling judged and stigmatised only twice instead of four to six times a year, and it would be a benefit to everyone else who is sick, even the nurses will have more time.
South Africa’s national guidelines now say that most people should get a 3 month supply of ARVs. They were revised in 2023 based on strong evidence showing longer ARV supplies support long term retention. They also allow for people to get a 6 month supply from their clinic when they collect their script. Since 2021, the World Health Organisation (WHO) has recommended that preferably people doing well on treatment should be getting a 6 month supply of ARVs. This would mean going to your clinic just twice a year for clinical review, rescript, and collecting your next 6 month supply of pills.
“When I started getting a 3 month supply of ARVs it was such a relief to not have to go to the clinic every month. Now it’s time for this 3 month supply to be boosted to 6 month supply,” says Lebohang Mokhele, TAC’s national representative for people living with HIV. “As TAC we have been calling for this for many years now. It’s time for the department to stop asking if we want it. As people living with HIV, we can tell you we want to get a 6 month supply! As a TAC leader, I also do advocacy and outreach at clinics and speak to many people living with HIV, and the unanimous feedback is that a 6 month supply should be given to all people who are stable. It’s time the department listens to us! More than 6 million people living with HIV across Africa are already getting a 6 month supply with good results, so why not here in South Africa where we have the biggest HIV burden in the world?”
“The department says it wants to get more than one million people to start or get back onto treatment by the end of 2025. But the truth is that treatment for all — and reaching the UNAIDS 95-95-95 targets — is impossible without a 6 month supply decongesting our clinics of people who are already on treatment and doing well. It’s now December 2024 and while more people are getting a 3 month supply, there is no plan at all for implementation of 6 month supply,” says Anele Yawa, TAC’s General Secretary.
“We are marching today to demand that the National Department of Health urgently finalises its implementation plan including supply chain management processes to ensure that all stable people get a 6 month supply of ARVs if they want it. We want to see this start being rolled out before the end of the year with at least 30% of people stable on their treatment getting a 6 month supply by end June 2025. This is an extremely simple intervention with big gains for people living with HIV, and the public health system more broadly. The department must also hold provinces and districts to account to fix the other challenges in our clinics that make people stop taking their ARVs, like being chased away without a transfer letter, or punished if you are late for an appointment,” Yawa continued.
In summary, one person living with HIV in the Western Cape told us that after nearly two decades on ARVs, it’s time for the management of HIV to also adapt and change with the times: “I would be very happy if they could give me a 6 month supply all the time. I have 20 years on these ARVs now and by now I know what is what when it comes to looking after my health. All I’m asking for now is that they put people like me, who understand the medication, on to a 6 month supply. It will help us, and it will also help the clinics”.
#MoreARVPillsNow
For more information or to arrange interviews contact:
Ngqabutho Mpofu: 072 225 9675 | ngqabutho.mpofu@tac.org.za
Xabisa Qwabe: 076 850 6736 | xabisa.qwabe@tac.org.za (contact at the march)
Note to editors:
The memorandum is available here: https://www.tac.org.za/wp-content/uploads/2024/11/TAC-Memorandum-World-AIDS-Day-December-2024.pdf
March information:
Sunday 1 December
Gathering | 8am – 9am — Sihlanguleb.B Best Bake Pty Ltd, Mdantsane https://bit.ly/49fjuZJ
March | 9am – 10.30am
Programme & handover of memorandum | 10.30am – 11.30am — Sisa Dukashe Stadium, Mdantsane https://bit.ly/3V8Fyzi
Photos available on request.
www.tac.org.za
#MoreARVPillsNow
