4th edition Ritshidze report reveals only 17% of people with HIV get 3 month supply of ARVs in the Free State

  • 4th edition of State of Health report compares data over the last four years of community-led monitoring in the Free State
  • 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 Thabo Mofutsanyana (27 August) and Lejweleputswa (29 August) this week
  • The meetings will be live streamed on vimeo/vimeo, facebook/facebook, and YouTube/YouTube.

Bethlehem, 27 August 2024“I wish to get a longer supply of ARVs…. when you get there you queue for a long time unnecessarily just for collection… a longer refill will help”. 

Long waiting times continue to frustrate public healthcare users who waste long hours in queues for check-ups and even just to collect medication. 81% think the waiting times at the facility are long.

“I come to the clinic sometimes at 6am to wait for the clinic to open at 8am and I will only get out of there again after maybe 12 noon,” one person told us. He says people are forced to endure the long wait even before the clinic opens because they’re afraid they’ll be turned away if they are at the back of the queue. 

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 11% reported receiving a 3 month supply in Thabo Mofutsanyana and only 25% in Lejweleputswa — despite being recommended in National ART Guidelines.

This compares to 98% of people reporting a 3-6 month supply in Mopani (Limpopo), and 97% in Bojanala (North West). The Free State has made the least progress towards giving people longer ARV refills out of all provinces monitored by Ritshidze.

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.

“I would be very happy if they could give me a longer supply of treatment so that I don’t go to the clinic as often and avoid the queue,” one person living with HIV told us. “The problem I have is the long waiting times. We arrive early but we leave the facility around 3pm to 4pm,” another said. “I would like to get a 6 month supply of ARVs.”

Longer ARV refills are among ten key issues outlined in the fourth edition of a new Ritshidze State of Health report in the Free State. The report will be launched at two district community meetings this week — in Bethlehem today (Thabo Mofutsanyana) and Thabong on Thursday (Lejweleputswa)

The report also finds that health workers continue to treat people poorly — only 50% of public healthcare users reported that staff were always friendly. They also continue to mock, judge, or refuse to acknowledge people who use drugs, sex workers, and members of the LGBTQIA+ community — let alone be sensitive to or knowledgeable of the health services they need. “The clinic staff are so rude and they truly don’t care about how we feel,” one sex worker explained.  

Only 55% of gay, bisexual, and other men who have sex with men (GBMSM) said staff were always friendly, only 48% of trans people, only 47% of sex workers, and as few as 37% of people who use drugs. One person told us how: “the staff knew I was someone who uses drugs. All I wanted was to get ARVs because I was in pain. It took 3 weeks to receive them”. One trans woman explained how: “They are leaving us feeling destroyed. They are aware that we feel like we are someone else in the wrong body but they don’t try to understand, or even to listen. We are unseen.”

Another challenge is an ingrained culture of punishing those who are late for appointments. Health workers must recognise that people living with HIV might miss appointments and may even miss taking some pills. That is normal. When they return to the clinic they should be met with support and encouragement, not punishment that “leads to more people stopping taking treatment” as one person living with HIV put it.

Yet 26% of those who had been late for/missed appointments said staff shouted at them, and 46% were sent to the back of the queue. “If you miss your appointment they make you wait… you go to the clinic at 6am and leave at 4pm. They shout at you for missing your date” another said.

Alarmingly, some people even report health workers denying them ARVs following a late or missed appointment. “We get punished for missing dates. I went to the clinic for five months without being helped,” explained one person. Another woman explained how she asked for enough pills to last until her new appointment date but they refused. “I was devastated,” she told us. “This month I missed my appointment because I was at work. I was sent away. Even now I have not received my pills,” another person told us.

Changing between clinics can also turn into a nightmare as outlined in the report. 130 people told us they or someone they knew had been denied services without a transfer letter over the last year. “I had to stay without ARVs from March 2023 until May 2024 when I got the transfer letter,” one person explained.

On top of that, 550 people also reported being denied services without an ID. “Whether you have a transfer letter or an ID or not, you should get services,” one person exclaimed. The Free State was one of the worst provinces for turning people away like this accounting for 24% of the 2,309 of people who have reported this to us across the 8 provinces in which we monitor. 

A further finding is that not all people taking ARVs understand the benefits of taking their pills every day. Only 78% of those surveyed understood that having an undetectable viral load means treatment is working well — and just 72% understood that having an undetectable viral load means a person cannot transmit HIV. 

One person told us that: “they never tell you the results. You don’t know what your CD4 count is or how low your viral load is. The last time they explained my results to me was when I first tested positive”. The Free State was among the lowest scores on these indicators.

Healthcare workers taking the time to explain people’s viral load test results is critical to improving this performance. Yet only 78% said that their results had been explained. “They don’t explain anything… They tell us that it is not our concern. They don’t tell us anything. They just give us papers and some of us cannot read,” one person explained.

For many there seems to be no practical opportunity to ask questions at these appointments. One person explained: “You yourself are tired by the time it is your turn. Then you can see that the nurses are showing a bad attitude and they don’t want to do anything extra, so you don’t feel comfortable to ask anything. You just take your script and you go”.

Lowering the rate of new HIV infections is critical to turning the tide on HIV. Yet, while globally we talk of 6 monthly prevention injections, the reality in our clinics is that even basic tools like lubricants are not always available. 

Lubricants can make sex safer by reducing the risk of vaginal or anal tears caused by dryness or friction, and can also prevent a condom tearing. Yet, out of 95 clinics monitored in the province, only 41% actually had lubricants available. “They have not had lubricants in stock for the past two years,” one gay man living with HIV told us. 

Despite promises made by the Free State health department in 2022, this year there was a decline in the number of sites making lubricants freely available. “There are risks associated with my work, condoms burst…. yet there are no lubricants,” one sex worker explained. 

Clinic cleanliness is another challenge raised in the report. 21% of public healthcare users reported that clinics were dirty or very dirty — worse than any other province monitored by Ritshidze. “The cleaner once said to me there is no mop. How do they hire cleaners without cleaning equipment?” one community member asked us.

75% of toilets were also found to be in a bad condition, with 21% having no running water and 26% having no water at all. “I think it has been 4 to 5 years of experiencing water and toilet problems” one person told us. Another said: “The toilets are not working. There is no toilet paper, no water or soap, and they are dirty”.

This year’s report continues to call for urgent action to improve health services across health facilities in the Free State. The failures in the health system are core reasons why people struggle to stay on ARVs, or access HIV prevention. Instead of feeling less anxious and more in control of your own health, clinic visits are more frustrating and time wasting. Instead, clinics must become safe spaces that provide empathy and support to everyone, regardless of who they are, what they do, or where they come from. Clinics must offer evidence based strategies to make staying on treatment easier. This is critical to ending AIDS. 

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 Free State State of Health report; the first was published in September 2021, the second in September 2022, and the third in August 2023

Today, Ritshidze is providing a platform for community members to raise their concerns directly to the Free State health department, the Thabo Mofutsanyana and Lejweleputswa district health departments, the national health department, and PEPFAR partners working in the province, Right to Care and Wits RHI. Duty bearers are afforded the right to respond. 

To follow proceedings virtually please join at: 

Thabo Mofutsanyana: Tuesday 27 August: 

Vimeo | YouTube | facebook

Lejweleputswa: Thursday 29 August: 

Vimeo | YouTube | facebook

The full State of Health report for Free State is available here

The full Free State presentation is available here

The Thabo Mofutsanyana presentation is available here

The Lejweleputswa 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 34 facilities across Free State: 18 in Lejweleputswa and 16 in Thabo Mofutsanyana. Additional once off data were collected during this data period in a further 17 facilities: 6 in Lejweleputswa and 11 in Thabo Mofutsanyana. All monitoring tools are available here: https://ritshidze.org.za/category/tools/ 

Data in this report were collected between April 2024 and May 2024.

  • 51 facilities were assessed
  • Interviews took place with 50 Facility Managers
  • Observations took place at 51 facilities 
  • Interviews took place with 2,659 public healthcare users
    • 48% (1,270) identified as people living with HIV
    • 9% (250) identified as young people under 25 years of age

Additional quantitative data related to HIV prevention were collected in June 2024 and are compiled with HIV prevention data for existing Ritshidze sites in this report. Data collection took place at an additional 43 sites across three districts: 19 sites in Fezile Dabi, 3 sites in Lejweleputswa, and 21 sites in Mangaung. 

Additional quantitative data related to members of key populations were collected between July and September 2023. Data collection took place across three districts: Lejweleputswa, Mangaung, and Thabo Mofutsanyana. A total of 1,449 surveys were taken, combining 357 gay, bisexual, and other men who have sex with men (GBMSM), 659 people who use drugs, 270 sex workers, and 163 trans people.

Follow Ritshidze on twitter, facebook and instagram for regular updates or go to www.ritshidze.org.za for more information.

About RITSHIDZE

“Ritshidze” — meaning “Saving Our Lives” in TshiVenda — has been developed by people living with HIV and activists to hold the South African government and aid agencies accountable to improve overall HIV and TB service delivery.

Partner organisations include 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+)—in alliance with Health Global Access Project (Health GAP), the Foundation for AIDS Research (amfAR), and Georgetown University’s O’Neill Institute for National and Global Health Law.

CLICK HERE to read more and see where we work.