The new Executive Director of the Joint United Nations Programme on HIV/AIDS (UNAIDS), Winnie Byanyima, was in Soshanguve, a township north of Pretoria, this past weekend for a clinic visit, a town hall engagement with the local community, and to partake in activities of a new civil society clinic monitoring project called Ritshidze.

The visit was one of Byanyima’s first engagements as head of UNAIDS and came two days ahead of World AIDS Day.

Byanyima, 60, hails from Uganda and is a diplomat and activist. Prior to starting in the UNAIDS top job in November 2019, she was the executive director of Oxfam International. Before that, she served as director of gender and development at the UN Development Programme. Her recent appointment at UNAIDS was widely welcomed among activists, particularly gender activists unhappy with the handling of allegations of sexual harassment at UNAIDS under her predecessor Michelle Sidibé.

After a visit to a clinic in Soshanguve, Byanyima was impressed with how the community is taking charge of what they need.

“The theme of this report this year is that communities matter; that we must invest in communities and that it is communities that make things happen for their people and that is what I’ve found here,”  Byanyima said.

She said the community served by this clinic is helping the health professionals to give them what they need. “Because it is communities who know what they need and it is communities who need to supervise and speak out and demand from duty bearers to deliver. That is important.”

The Ritshidze project is a new community-led monitoring and accountability initiative of HIV and TB services in high-burden public healthcare facilities in South Africa. On Friday Byanyima had first-hand experience of how this project works.

Byanyima observed that she found a clinic that works despite challenges.  She praised healthcare workers for their creativity in handling these challenges.

“[They] turned a toilet into a consulting room; removed the toilet and kept the sink and even though there is no bed here, there’s space for a patient to be examined – so, it is still working.”

She noted that challenges around space and staff shortages result in long queues and waiting times.

“And this is the type of things the community is noting in their monitoring forms. So, this gives me hope that people can speak and be heard.”

She also stressed the importance of communities asserting themselves as rights claimants and making it clear to duty bearers that they are checking on them.

After the clinic visit, Byanyima heard testimony from local community members who gathered in the Halala community centre hall in Block H in Soshanguve. These included reports of multiple service delivery failures in public sector clinics and hospitals – the type of issues the newly launched Ritshidze clinic monitoring project wants to change.

People reported long waiting times – sometimes arriving at clinics at 4am and only leaving 12 hours later. Some people reported bad attitudes from nurses as well as from security guards and cleaners. Worse still, some said, is the inefficiency and unprofessional conduct from nurses that has compromised their healthcare. People also spoke about intermittent stockouts, non-functioning and dirty toilets, and emergency services that never arrive on time, if at all.

Senior representatives of the Department of Health accompanied Byanyima to the clinic but did not attend the community meeting.

A TAC member who stood up to tell her story declared how she is living her life positively on treatment but also highlighted the fact that she knows she gets better treatment because she’s a community activist.

Others are not so lucky.

One 35-year-old woman’s testimony silenced the hall. As she spoke her voice cracked and her eyes filled with tears. She said that she is HIV positive and a single, unemployed mother to two teenagers. She developed an anal abscess in 2017 that has resulted in two botched operations. She says she has little hope for her future.

Goodness Mbatha, a community monitor from the Ritshidze Project, who met the woman during a door-to-door campaign in January, said the woman was diagnosed with HIV in 2006 and she knows that her daughter, who washes her and cleans the unhealed sores, is at risk of infection. “She wants so little – some pads from the hospital, maybe even some gloves so that she can minimise HIV infection risks,” said Mbatha.

Vionne Visagie, a woman living in Winterveld, raised her hand to speak in the hall. She said: “I am not HIV positive but I’m living positively with HIV.” It brought on claps and cheers of “Yes Girl!” from the audience.

Visagie, 32, spoke to Spotlight after the dialogue. She said standing up in a hall and giving a positive message is important. She has felt that way since she was diagnosed with HIV 13 years ago. She found out her status a year after her son was born. Though he was born HIV negative, she believes that she contracted HIV from a boyfriend at the time and her son contracted the virus through her breast milk.

“This is the part that is difficult for me. My son developed problems from the HIV and he had something like a stroke so he’s not alright and lives with my granny in Shoshanguve now. Every time I look at him, I think ‘if only’. People don’t understand that pain,” Visagie said.

“What hurts me most is that the neighbours wouldn’t let the other children play with my child and even now he gets sick from pneumonia all the time and I can get a phone call at 2am or 3am from my granny saying she’s at the hospital. Every time I think maybe it is going to be his last day.”

Sibongile Tshabalala, TAC chairperson, who facilitated the dialogue, said: “People think we are exaggerating when we hear these stories but this is how people living with HIV are being made to lose their dignity … it is difficult to hold back our tears.”

Byanyima pledged solidarity as she addressed the community at the end of the dialogue. She said her report will focus on communities, in recognition of the fact that community courage and action are what pushes back ineffective governments and weak leadership. “It’s also communities that know best what people need,” she added.

“I have come here today and I see you standing up and I salute you and I praise you – keep doing what you are doing,” Byanyima said. She said patients should not be treated as if they had to grovel for decent care from service providers and access to life-saving therapies.

Byanyima also had a word for the people who shared their stories of living with HIV/Aids.

“I have seen people crying; I have seen your pain – this is a struggle for life but you are the heroes who are speaking out against stigma,” she said.

The Ritshidze project, a new community-led monitoring and accountability initiative of HIV and TB services, is a collaboration between the Treatment Action Campaign, Positive Action Campaign, Positive Women’s Network, the National Association of People Living with HIV and AIDS, and the South African Network of Religious Leaders living with or Affected by HIV and AIDS. Other partners include Health GAP, amfAR, and Georgetown University’s O’Neill Institute. DM

The TAC is mentioned in this article. Spotlight is published by SECTION27 and the TAC but is editorially independent – independence that the editors guard jealously.

This article was produced by Spotlight – health journalism in the public interest. Spotlight is a member of the South African Press Council.