“We understand the nurses are trying.. but it’s not good enough when we’re not getting the care to stay alive”
TB is the leading cause of HIV-related deaths in South Africa — with 31,000 people living with HIV who died of TB in 2022. While HIV treatment greatly reduces the risk of getting TB, taking pills to prevent TB known as “TB preventive therapy” can further reduce TB sickness and death. TB preventive therapy is a critical part of the public sector provided HIV minimum package of care. It has been jointly funded by the South African government, Global Fund and U.S funding through PEPFAR, however now some people have reported challenges in accessing it. We spoke to Thuli from KwaZulu-Natal who shared her experience:
Since she was nine years old Thuli* has suffered with bouts of TB. When she contracted HIV in the mid-2000s she knew that HIV would be an additional blow to her health.
Over the past two decades managing the two diseases has made her a regular at the Newlands Clinic in Durban, KwaZulu-Natal. She wishes people understood how much people rely on the public health services running smoothly. When it doesn’t, the knock-on effects can be dire.
Her worry right now is that the gains made in the fight against HIV and TB in the past 20 years are in decline because service standards at clinics are dropping and government is failing to step in.
Thuli says: “Back in the 2000s we didn’t have medication. And for me it was waiting to have a CD4 count of 250. It meant that I only started treatment in 2008. I remember being very worried at that time but I just had to wait even though I was already sick.”
She says there have been high points over the past 20 years, like advances in treatment that has meant she only needs to take one pill, once daily to manage her HIV. The introduction of external pick-up points and longer refills have also made it easier for her to take care of herself.
But she says the days of deep worry have emerged again. Right now, it’s around managing her TB. She says government can’t drop the ball on TB.
Late in 2024 Thuli got sick again with TB. She completed her course of TB medication at the end of January this year through the Newlands Clinic and was supposed to start TB preventive therapy using a drug called isoniazid (INH) to prevent relapse.
“I had to ask the nurses at Newlands about receiving INH on 29 January. The nurse looked at my file and said she could see I was supposed to start medication but she said they were out of stock and I would have to get it at my next clinic date when I collect my ARVs” she says.
Thuli was in distress, unsure why she must wait and not collect her INH earlier. She says the nurse made no effort to source the medication for her from another clinic. She eventually had to reach out to community activists who arranged for her to get two months’ supply of INH from a local NGO.
“How can they think that I can just go three months without my INH medication and they know that I am also HIV-positive and my immune system can be affected,” she says.
Since her last bout of TB, Thuli was not allowed to collect her ARVs from her external pick-up point anymore, she had to return to Newlands Clinic as she needed closer clinical management of her TB. She says this change has been a nightmare. She is unsure why now that she has completed her TB treatment, she can’t go back to her external pick-up point to collect both her ARV and INH supply.
“At the external pick-up point you are in and out. Now I have to wake up early to be at the clinic at 7am and I will be there for three hours just to collect ARVs. Even if the clinic closes at 4pm, they will not help you if you come there after 2.30pm. They will tell you to come back the next day,” she says.
Thuli acknowledges that the clinic is understaffed and it means public healthcare users are bearing the brunt of long waits, of frustrated nurses, and those who are not motivated to give a professional service.
“Our files go missing and the nurses are always making duplicates. We also don’t get our results from our blood tests, our files are empty,” she says.
Thuli adds: “We understand that many of the nurses are trying their best, but it’s not good enough when we are not getting the care we need to stay alive.”
We need the South African government to step in following the suspension and loss of U.S government funding to ensure that comprehensive quality HIV and TB services are maintained, including sufficient stock of TB preventive therapy at both health facilities and CCMDD (which supplies external and facility quick pick-up points). People should immediately be re-enrolled in their external and facility pick-up points when again eligible after completing TB treatment to make it easier to collect their ARV and INH supplies between their 6 month clinical consultations at their clinic.
* 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
