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Community organisations in the AIDS response

“Just before the Covid pandemic, we were 35 networking organisations working together,” says Colin Van Wyk, the Director of Phambili, a community organisation based in the Strand, Western Cape. “Twenty-nine of these organisations have actually closed down due to lack of funding.”

South Africa has come a long way since the early days of the AIDS pandemic. We now have the largest treatment programme in the world with – 5.4 million on treatment – and there are many new convenient prevention and treatment options available. Scientific advances mean that someone living with HIV, who is successfully on treatment, can live a long and almost completely normal life. But the Covid-19 pandemic stalled our progress, in part by placing enormous strain on the organisations and networks that do the heavy lifting in communities across the country.

“Especially through the pandemic, we needed each other,” continues Colin Van Wyk. “There was a lot of confusion in the community so we being in this community, people trusted us.” Community organisations like Phambili and others that NACOSA works with, play a significant role in linking people to HIV and other services.


“Community organisations are strongly embedded in communities and are led by passionate and  committed people but they lack the resources and leadership development support they need,” said NACOSA’s Executive Director, Mohamed Motala, ahead of its Leadership and Networking Summit on 30 November in Cape Town.

Building collective, values-driven leadership and networking within civil society is therefore key to strengthening and accelerating South Africa’s HIV and AIDS response.”

The NACOSA Leadership and Networking Summit brought together NACOSA and its government, donor and civil society partners in the HIV, AIDS, TB and GBV response ahead of World AIDS Day on 1 December around the topic of Leadership for Health. Speakers include Cape Town’s Deputy Mayor, Alderman Eddie Andrews, Advocate Bonnie Currie-Gamwo from the National Prosecuting Authority, the Leader of the Official Opposition in the Western Cape Legislature, MPL Cameron Dugmore, and renowned AIDS activist and TAC National Chair, Sibongile Tshabalala, who also sits on NACOSA’s Board.


Feedback on research that NACOSA recently conducted with community based organisations as part of its Community Systems Strengthening Programme, funded by the Global Fund, was presented at the Summit. NACOSA assessed the capacity development of 54 community based organisations in Gauteng, the Northern Cape and the Western Cape. Leaders of these organisations were also taken through a questionnaire on collective, values-driven leadership.

“It is clear that while these organisations are strong in shared values, networking and their connections within communities, they struggle with risk management and longer-term strategic planning,” said Motala reflecting on the data. Most organisations were scored during the assessments as still developing when it came to governance, leadership and strategy.

“Collective leadership for me means commitment by leaders at all levels to lead with their values and create a culture that optimises financial performance, ethical practice, social contribution and environment impact,” reported an organisation leader from the Northern Cape.

Interestingly, the organisations in the poorer-resourced provinces tended to be better developed in the Leadership and Networking domains of the capacity assessment. “Community organisations are busy building networks and are recognised and respected within communities. They are doing a lot to be resilient and self-sufficient in the face of really quite extreme circumstances. But they lack the support and resources to advocate for the communities they serve and to participate in government planning and policy making at all levels.”

“They are crying out for skills, especially in the more technical aspects like monitoring and evaluation.”


Many of the organisations’ leaders expressed a feeling of isolation and stress in the face of funding and capacity challenges.

“A challenge comes when there are no funds and that requires leaders to come up with solutions on how to sustain the organization. As a leader when that challenge comes, I am now used to dancing alone,” reported an organisation leader from Gauteng.

Organisations also reported that they did not have the luxury of staff wellness initiatives or enough funding to retain qualified staff to deliver services. When asked what they needed to strengthen their organisation’s leadership, most cited adequate human, technical and financial resources, capacity building for board and management and an environment that values learning.

“It is beyond time that society cuts community organisations some slack and has more respect for the critical role they play,” concluded Motala. “That is why NACOSA hosted this summit to listen, make connections and understand what organisations need to continue doing the heavy lifting in the HIV response.”

As Colin Van Wyk from Phambili says:

“You need people. It is together that we can make a difference.”

The NACOSA Leadership & Networking Summit was streamed live on Youtube. You can view the stream here: