- 4th edition of State of Health report compares data over the last four years of community-led monitoring in the Eastern Cape
- The data, together with stories from people living with HIV, members of key populations and other public healthcare users, will be presented at two district community meetings — in Buffalo City (17 September) and OR Tambo (19 September) this week
- The meetings will be live streamed on vimeo/vimeo, facebook/facebook, and YouTube/YouTube.
Braelyn, 17 September 2024 — “I told them that I don’t have money to go get a transfer letter as I am not working. They told me that it is not their problem and they can’t do something that they are not hired for… after all of that I gave up. It has been 7 months without taking ARVs”.
Changing between clinics can be a nightmare in the Eastern Cape. 495 people told us they or someone they knew had been denied services without a transfer letter over the last year — something that is not required by ART guidelines to start or restart your ARVs.
One person who has been denied ARVs since March explained how “it seems as if I defaulted intentionally, but I have not… I want to be assisted… I do not know where else I could be helped”. The Eastern Cape is one of the worst provinces for turning people away like this — turning people away at 2.5 times the rate of other provinces and accounting for 33% of the 1,508 people who have reported being refused services without a transfer letter to us across the 8 provinces in which we monitor.
On top of that, 346 people also reported being denied services without an ID — accounting for 14% of the 2,392 of people who have reported this to us across all provinces monitored. “I was turned away. Up until now I haven’t gone back to take blood (for my viral load test) because I don’t have my ID”, one person living with HIV reported.
Members of key populations we interviewed had also been refused access to health services. 7% of sex workers, 9% of trans people, 14% of people who use drugs, and 15% of gay, bisexual, and other men who have sex with other men (GBMSM) we surveyed had been denied services in the last year.
One person who uses drugs described how “they told me I am dirty and I should go home and bath. It felt like they were disgusted by me. I went home without getting the help I needed… I never went back to the facility”. Of those who had been denied services, 15% of trans people, 28% of sex workers, 33% of GBMSM, and 42% of people who use drugs never ended up getting the services they needed.
Being denied services is a humiliating, painful, and unjust experience to go through — and a violation of the Constitutional right to health, equality, and human dignity. While some people may suffer the indignity of trying to get services another time, others can be pushed out of care altogether.
Denial of services are among ten key issues outlined in the fourth edition of a new Ritshidze State of Health report in the Eastern Cape. The report will be launched at two district community meetings this week — in Braelyn today (Buffalo City) and Khwezi on Thursday (OR Tambo).
Another challenge highlighted in the report are the long waiting times that continue to frustrate public healthcare users who waste long hours in queues for check-ups and even just to collect medication. While waiting times have come down since when Ritshidze first began monitoring in 2020, in the Eastern Cape, progress has stalled over the past two years. Waiting times actually increased since last year’s report to an average of 3 hours 31 minutes — and 60% of those surveyed thought the waiting times at the facility were long.
“The waiting time is too long and there’s nothing we can do. They can attend to you after 3pm. You will stay there for more than 5 to 6 hours,” one person explained to us. Another described how you can even be turned away and told to return the next day: “I arrive at the clinic by 7am to get there early. When it’s time for me to take my pills, they might say they’re closing despite me arriving early… they don’t care”.
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. However, only 48% reported receiving a 3 month supply in Alfred Nzo and only 50% in OR Tambo — despite being recommended in National ART Guidelines.
This compares to 98% of people reporting a 3 month supply in Bojanala, 90% in Dr Kenneth Kaunda, and 89% in Ugu — the best performing districts. OR Tambo and Alfred Nzo are among the districts that have made the least progress towards giving people longer ARV refills out of all districts monitored by Ritshidze.
“I usually don’t have the money to go to the clinic all the time. I would also like it if they gave me a 3 month supply so that I don’t have to go there each month. Many people disengage from care because of not having money to go,” one person living with HIV from OR Tambo told us.
Not only would a longer supply of ARVs mean fewer trips back to the clinic — making medicine collection easier — but it would also reduce the burden on already congested and overstretched facilities. The guidelines were revised in 2023 based on strong evidence showing longer ARV supplies support long term retention.
In addition to longer refills, people should be able to collect their ARVs through easier and quicker pick-up points, either externally or at the facility. Yet 49% of people surveyed still reported collecting through standard medicine dispensing, having to consult with a clinician at the facility to get rescripted on each visit. “If I go to the clinic I am forced to cancel the entire day. We wake up early because we know we will spend the whole day there with no-one paying attention to us,” one person living with HIV told us. 41% had never even been offered the option to use a pick-up point or club — and 49% of all people living with HIV surveyed said that they would like to collect ARVs closer to their home if it were possible.
Another challenge is that since last year’s report the clinic staff have become less friendly towards public healthcare users. “They like to shout at you in front of everyone and they will say you are late for your appointment even when you tell them you have been waiting outside from early on. They don’t want to listen to you, they just keep shouting,” one woman living with HIV explained.
The ill treatment is particularly bad for people who use drugs, sex workers, and members of the LGBTQIA+ community — who instead of finding staff who are sensitive to and knowledgeable of their health needs, in fact often find judgement and disrespect. Only 18% of GBMSM said staff were always friendly, only 15% of trans people, only 12% of sex workers, and only 7% of people who use drugs.
One man recounted being told he was “spreading things around” because he was queer, telling us how “each word was a jab, undermining my dignity, questioning my integrity”. Someone who uses drugs told us how painful “the looks and language they used when speaking” to him are. And a sex worker remembered how “she shouted at me in front of everyone… this made my heart sore. I stopped going there after this experience”.
Trans women we spoke to also recalled uncomfortable and dehumanising experiences of being told to use Men’s Corner to get their health services — as reported by 27% of trans women surveyed. Being forced to access services in spaces designated for men is reckless, dangerous, and unconstitutional.
“At the clinic they kept telling me to go to the Men’s Corner even when I told them I don’t feel comfortable being assisted by a male nurse,” one trans woman explained. Another told us, “I am not comfortable sharing with the male nurses in the Men’s Corner because I feel they are homophobic and transphobic… I feel really uncomfortable. It feels like a violation”. Another recalled how “a woman from TB HIV Care mockingly told me to use the Men’s Corner after telling her how I identify. They are very unprofessional”. As a result, 36% of the trans women surveyed refused and never received the services they needed.
The availability of lubricant is another challenge reported. Despite being a basic HIV prevention tool only 30% of clinics monitored had lubricant available. “I sometimes just go to the facility to check if they have condoms and lubes, but you hardly ever find them. Especially lubes. It is a big problem” one gay man told us. For those who did ask for lubricants, too often staff were disrespectful. One trans woman recounted a receptionist saying “yhoo, hai peto” after having to explain why she needed lubricant.
This year’s report continues to call for urgent action to improve health services across health facilities in the Eastern Cape. We cannot get everyone on HIV treatment while denying people health services, or by making conditions intolerable. The failures in the health system are key reasons why people struggle to stay on ARVs, or access HIV prevention. All public healthcare users should be treated with dignity and respect. Yet as it stands, some public healthcare users do not know where to turn: “we can’t do anything about their poor service. You don’t even fight for yourself because you know that the nurses know that no matter how badly they treat you, you still have to rely on them; so we just tolerate everything they do to us.”
For more information or to arrange interviews contact:
Ngqabutho Mpofu | +27 72 225 9675 | ngqabutho.mpofu@tac.org.za
Lotti Rutter | +27 82 065 5842 | lotti@healthgap.org
Note to editors:
This is the fourth edition of the Eastern Cape State of Health report; the first was published in September 2021 and the second in September 2022, and the third in September 2023.
Today, Ritshidze is providing a platform for community members to raise their concerns directly to the Eastern Cape health department, the Buffalo City and OR Tambo district health departments, the national health department, and PEPFAR partners working in the province, MatCH and TB HIV Care. Duty bearers are afforded the right to respond.
To follow proceedings virtually please join at:
Buffalo City: Tuesday 17 September:
OR Tambo: Thursday 19 September:
The full State of Health report for Eastern Cape is available here
The full Eastern Cape presentation is available here
The Buffalo City presentation is available here
The OR Tambo presentation is available here
A summary report is available here
A summary of recommendations is available here
About the report:
The report has been developed using data from Ritshidze — a community-led monitoring system developed by organisations representing people living with HIV, including the Treatment Action Campaign (TAC), the National Association of People Living with HIV (NAPWA), Positive Action Campaign, Positive Women’s Network (PWN), and the South African Network of Religious Leaders Living with and affected by HIV/AIDS (SANERELA+).
Ritshidze monitoring takes place on a quarterly basis at more than 400 clinics and community healthcare centres across 29 districts in 8 provinces in South Africa — including 54 facilities across Eastern Cape: 9 in Alfred Nzo, 18 in Buffalo City, 6 in Chris Hani and 21 in OR Tambo. All monitoring tools are available here: https://ritshidze.org.za/category/tools/
Data in this report were collected between July 2024 and August 2024.
- 54 facilities were assessed
- Interviews took place with 54 Facility Managers
- Observations took place at 53 facilities
- Interviews took place with 2,935 public healthcare users
- 51% (1,491) identified as people living with HIV
- 13% (388) identified as young people under 25 years of age
Additional quantitative data related to HIV prevention were collected in July 2024 and are compiled with HIV prevention data for existing Ritshidze sites in this report. Data collection took place at an additional 31 sites in Buffalo City.
Additional quantitative data related to members of key populations were collected between July and September 2023. Data collection took place across four districts: Amathole, Buffalo City, Nelson Mandela Metro, and OR Tambo. A total of 2,833 surveys were taken, combining 516 gay, bisexual, and other men who have sex with men (GBMSM), 1,168 people who use drugs, 866 sex workers, and 283 trans people.
Follow Ritshidze on twitter, facebook and instagram for regular updates or go to www.ritshidze.org.za for more information.
