“Last month I was only given enough HIV pills for 28 days — it worries me”
The dysfunction in our clinics is a key reason that people stop taking their ARVs. Over the years Ritshidze has documented hundreds of testimonies and produced countless data that show how people stop going to the clinic because of the long waiting times, or being treated disrespectfully, as well as due to the poor conditions. This is why TAC has been calling for people who are collecting ARVs to simply get a longer supply of medication. This would mean fewer trips back to the clinic just to collect medicines, reducing the cost and time spent at the facility, as well as opportunities to be treated poorly.
While the government wants more than a million people to start or get back onto HIV treatment by the end of 2025, we know this will not be possible without making it easier for people to collect their pills. However, following the U.S. funding suspension, some people living with HIV are reporting extra challenges that are making it harder to stay on their ARVs. This includes getting a shorter supply of pills and staff shortages that are causing delays in scheduled viral load tests. This means extra trips back to the clinic as well as missing people with elevated viral loads who require clinical management. This will likely result in many more people stopping treatment. Hlubi* from Gauteng spoke to us about her experience:
From being used to receiving a three month script filled at each clinic visit Hlubi, who uses the Evaton Main Clinic, was last month only given enough tablets for 28 days.
“This is the first time for many years that this happened – it worries me,” she says.
Hlubi was diagnosed with HIV in 2014 and has been a public healthcare user at the clinic since then. Her worries about low stock levels of medicines were heightened in the middle of March when she went to the clinic for her sick two-year-old and was only given paediatric Panado. The nurse didn’t explain why. Hlubi remained worried that her child did not receive the medicine needed. Others in the clinic were also complaining that they didn’t get medicines they needed, she says. She then made the decision to buy additional medicines for her child.
This concern also came off the back of being turned away from getting a blood test to check her viral load at her clinic appointment in February.
“They told me I would have to come back a month later, because they were short staffed. But right now [mid-March], a month later, I still don’t know if they will send me away again. I want to have my blood tests because it’s stressful when you don’t know what is going on in your body,” she says.
The mother of four young children, says she’s also heard chatter among patients that they are having to buy more of their own medicine.
“I don’t know if it’s true, but nobody is talking to us about this, so we worry,’ she says. The nurses do not communicate to dispel these rumours or to reassure patients.
In the 10 years she’s used Evaton Main Clinic she says she’s watched things go from bad to terrible. While she applauds the standout carers, she says they have been few and far between.
“There was one nurse I remember; you could sit with her for 20 or 30 minutes and she would listen to you and try to understand and help you. We don’t have nurses like that anymore. I believe that if you’re not passionate to help people, then you shouldn’t be a nurse,” she says.
Hlubi says the nurses at the clinic are rude and unhelpful; also lazy, she says. She says nurses take many tea breaks even when queues are long. Hlubi asked to be anonymous because she says the nurses bully and victimise patients and she relies on the clinic for her and her children’s medical care – there is nowhere else to turn.
She also complains that the facility is in a bad condition and waiting times stretch into hours.
“I am in the queue by 6am, but the clinic only opens at 8am. The nurses will tell you they have meetings, so sometimes they will help you by 9am. I only leave at 11am, sometimes 12pm. And even though the clinic closes at 4pm, if you come at 2pm after your piece job they will tell you they can’t help you.”
“There are some nurses that are just rude – you can’t even ask a question like where you must go, they will shout at you,” she says.
The 6am wait begins outside the clinic. The facility has no safe waiting area. Inside the clinic, it’s the state of the toilets that Hlubi finds most horrifying.
“It is not hygienic. Sometimes there is no water to flush and no toilet paper. People can get sick and we can get infections from those public toilets,” she says.
Now on a monthly script for her ARVs and a delayed viral load test she has to make more frequent visits to the clinic. She is also stressed not having her usual confirmation of a suppressed viral load, which she understands is critical to maintain her health. She has to face all the issues she raised as the reality of a crumbling clinic system.
“Government is not listening to us. There is a complaint box, we write things in there but year in year out nothing changes. I don’t think government will ever listen to us,” she says.
The government has launched a campaign to get 1.1 million more people on HIV treatment, but this will not happen while it is becoming harder for people living with HIV to collect ARVs, get their viral loads done and stay on their treatment. We need the South African government to step in following the suspension and loss of U.S government funding to ensure that services are maintained. This includes ensuring that people are getting longer, not shorter, supplies of ARVs and their viral load tests done on the same day as their scheduled treatment collection.
* Identity withheld
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This is part of a series of stories that TAC is collecting to expose the realities in our clinics following the U.S government funding suspension. Follow our website and social media channels as we publish testimonies that highlight the impact on the lives of people living with HIV and other public healthcare users.
To find out how we are affected by the funding suspension see: https://www.tac.org.za/news/us-funding-cuts-to-health-and-hiv-services-threaten-lives/
For more information:
Ngqabutho Mpofu: 072 225 9675 | ngqabutho.mpofu@tac.org.za
Xabisa Qwabe: 076 850 6736 | xabisa.qwabe@tac.org.za
