• 2nd edition of State of Health report compares data over the last year of community-led monitoring in Gauteng 
• The data, together with stories from people living with HIV, key populations and other public healthcare users, will be presented at a community meeting today
• The meeting will be live streamed on vimeo, facebook and YouTube

Johannesburg, 24 November 2021 — For about two years now Lesedi’s every appointment starts with trying to locate her patient file, then a blame game and sometimes a fight over filling her script. It’s like this every time. 

“The file I’m using now is only from 2019 even though I was diagnosed 10 years ago at the same clinic and I started my HIV treatment there with them. When they look at the new file they will tell me that I have defaulted and sometimes they will fight with me and tell me they will not give me my treatment,” she says. 

There is a growing frustration for people living with HIV and other public healthcare users in Gauteng to have to bear the brunt of clinic staff who just don’t seem interested or committed to giving a decent service. Ritshidze data shows that 39% of patients interviewed think staff are sometimes or always unfriendly and people living with HIV at 57 clinics say they are shouted at if they miss an appointment. Yet there seem to be no consequences for bad service or underperformance. 

“The Department of Health and PEPFAR must address the persistent crisis in our clinics that discourages people from going to the clinic. Too many people continue to face the anxiety of being treated poorly and left in the dark by clinic staff and of running out of options even as the public healthcare system deteriorates,” says Sibongile Tshabalala, from the Treatment Action Campaign (TAC).

Unfriendly and insensitive healthcare workers, as well as disorganised filing systems that were observed at 24% of facilities monitored in Gauteng and identified as a cause of long waiting times by 29% of patients, are among ten key issues outlined in the second edition of a new Ritshidze State of Health report. The report will be launched at a community accountability meeting in Katlehong today. 

Like the earlier edition, the 2021 report identifies challenges that discourage people from going to the clinic, contributing to Gauteng’s failure to reach the UNAIDS 95-95-95 targets: in Gauteng while 90% of people living with HIV know their status, only 72% of those people are on HIV treatment, out of which 88% are virally suppressed. The failure to meet these targets is a result of the decay in the health system.

Another issue that affects long-term treatment adherence is people living with HIV not understanding the benefits of their treatment. 

“Fifteen years of ARV treatment and Monica, a community member I talked with, says she still doesn’t completely understand aspects of her treatment and she’s equally confused about her viral load and what this means. She’s never been given an explanation of her blood tests but it’s also her blood test results that are given as the reason why she has not been able to have her ARV treatment to be switched to a ‘one pill a day’ treatment,” said Bellinda Setshogelo, a Ritshidze Project Officer.

Ritshidze data shows that only 82% of people living with HIV in Gauteng said that a healthcare provider had explained the results of their viral load tests. Further, only 79% of people living with HIV agreed with the statement “having an undetectable viral load means the treatment is working well” and just 72% agreed with the statement “having an undetectable viral load means a person is not infectious.” While Ritshidze data shows improvements compared to the same reporting period last year, messages around the importance of long-term treatment adherence are still not reaching everyone.

Daily health talks at clinics as well as community-led treatment literacy programmes and social mobilisation are two solutions recommended in the report to ensure people living with HIV can become as informed as possible, and empowered to take control of their own health and sex lives.

For key populations, including men who have sex with men, sex workers, trans people, and people using drugs, the experience at clinics is often untenable. Community-led monitoring carried out by Ritshidze has found that too often staff are insensitive and unprofessional — and specific services for key populations often are not available.

“I won’t go back to the clinic because they make you explain yourself over and over again and it’s at reception, in front of everyone. There is no trans or queer literacy there, not enough lubricants or PrEP for sex workers and no methadone treatment if you are drug user. You can’t talk to anyone there about your health problems and with such ill treatment I don’t want to go back there ever again,” one community member explained to Neo Marumo, a Ritshidze Key Populations Organiser.

The report calls for all staff, from security guards to clinicians, to provide respectful, safe, friendly, and confidential services.

Communication and compassion are still key to improving a crumbling clinic system. The truth is public healthcare users do not expect the moon — just to be properly informed about their test results and the treatment they are receiving. As well as to be able to find the services that cater to their needs. They are only asking to be treated fairly and with dignity and professionalism

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 second edition of the Gauteng State of Health report; the first was published in December 2020. Like the earlier edition, the second edition of the Gauteng State of Health report outlines key challenges people living with HIV, key populations and other public healthcare users face in the province. The report focuses on the following critical themes: long waiting times and staff shortages; ART collection and continuity; treatment and viral load treatment literacy; the implementation of index testing to find people living with HIV; stockouts and shortages of medicines; accessibility of health services for key populations; TB infection control; infrastructure; and accountability.

Today, Ritshidze is providing a platform for community members to raise their concerns directly to the Gauteng health department, district and national health departments, and the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) partners working in the province. To follow proceedings virtually please join at: https://vimeo.com/648663605/32d7d16af3 

The full Gauteng State of Health report is available here

The full presentation is available here

A summary report is available here

A summary table of recommendations is available here

The media alert is available here

A recording will be available after the event on the Ritshidze website, Facebook, and YouTube channels.

About Ritshidze: 

With the establishment of 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+) — we have begun to more systematically document the failures in quality HIV, TB and other health service delivery at 118 facilities in Gauteng across four districts: 48 in the City of Johannesburg, 39 in Ekurhuleni, 23 in the City of Tshwane, and 8 in Sedibeng. 

Ritshidze collects data through observations, as well as through interviews with healthcare users and healthcare providers. All monitoring tools are available here: https://ritshidze.org.za/category/tools/ 

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