Health Systems Trust

Dec 01

Empowered communities will ensure the resilience and sustainability of our HIV response

Lebohang Dikobe on 2025-12-01 10:35 AM

by Judith King – HST Copy and Content Editor

Like many countries in Sub-Saharan Africa, South Africa's progress towards HIV and TB epidemic control has been dislodged by cuts in foreign aid, and several key aspects of our national response have been compromised – but this cannot thwart our efforts.

As Winnie Byanyima (UNAIDS Executive Director) has urged, we "must choose transformation over retreat".¹

In tandem with diversifying funding sources through international and bilateral agreements, we can build on what we know and have proved in the field as evidence-based, culturally appropriate interventions that have demonstrably saved lives. This will help to fulfil the World AIDS Day 2025 theme of 'overcoming disruption and transforming the AIDS response'.

Turning off the tap: HIV prevention

The country's HIV prevention challenges are more pressing than ever, but hope has been catalysed by developments such as the planned national roll-out of lenacapavir pre-exposure prophylaxis (PrEP) in 2026, as part of our comprehensive HIV response. This highly effective, long-acting antiretroviral drug, delivered via injection twice a year, offers six months of continuous protection per dose. We must also do everything possible to address the decline in condom use and inconsistent uptake of oral PrEP.

With nearly 1 000 adolescent girls and young women in South Africa being infected with HIV each week², the focus on reducing HIV risk among this vulnerable group must be intensified to protect their health and wellbeing, and that of future generations.

Fostering authentic partnerships with community forces

At Health Systems Trust (HST), one of our greatest strengths is that we are embedded in communities, in the knowledge that mobilising and empowering communities to promote and take up critical lines of healthcare services will be central to success.

Forging strong links between scientific knowledge and community engagement for action and practice enables individuals to make informed decisions about their health, own their future, and participate in developing and leading health system strengthening.

As expressed by HIV and human rights activist Oziel Mdletshe³, "community advocacy must play a stronger role in closing the gap between science and the people". He calls for better platforms for community participation, ensuring that individuals are not only aware of biomedical solutions, but are also empowered to apply them in their daily lives.

Innovation in HIV medication delivery through differentiated models of care – now a standard intervention – can be traced back to community-driven adherence groups and local actors making home deliveries.⁴ For this reason, the role of caregivers, community health promoters and grassroots organisations in this regard should be recognised, championed, capacitated and supported.

Highly organised community-led monitoring of health service quality standards by networks of people living with HIV and activist partners across the nation was pioneered through the Ritshidze ('saving our lives' in the TshiVenda language) programme in 2019. The campaign's triangulated data are now institutionalised for improving public health clinics' health services.⁴

How HST's work has innovated good practice and promising models

HST can attest to the value of community-orientated HIV services, based on our implementation of the DO ART Demonstration Project and related knowledge-transfer activities, and the work of our Outreach Teams in the Global Vax Project.

Community-based HIV service delivery achieved through the DO ART Project was so successful that many community members wanted to join the project (beyond the quota of project participants), and those enrolled wanted the project to continue and expand.

The DO ART project undertook targeted community-based HIV case-finding and linkage to care, with implementation of the model yielding an impressive 12% positivity rate.

Through direct service delivery and technical assistance to improve uptake of COVID-19 vaccination among marginalised and under-served populations in six KwaZulu-Natal sub-districts, the Global Vax Project gained key insights on vaccine-related knowledge gaps and misinformation, attitudinal and cultural barriers, logistical and access barriers, and healthcare worker preparedness.

Community mobilisation for the Global Vax project in Mpofana Sub-district (left), and a project outreach team navigates rural terrain to reach community members (right).

Moreover, throughout the implementation of our SA SURE Project – funded for almost 15 years by the US President's Emergency Fund for AIDS Relief (PEPFAR) via the Centers for Disease Control and Prevention (CDC) – we have applied community-focused programming to bring services to where people are; worked with civil society organisations to layer service delivery; conducted community dialogues to ensure that community members inform and shape interventions; and spearheaded peer-led initiatives that foreground the role of knowledgeable and relatable 'expert patients'.

Leveraging digital health to make HIV treatment accessible

As part of our contribution to the HIV response, HST plays a pivotal role in advancing digital health innovation in South Africa and the broader region, providing technical leadership, system development, and strategic guidance in collaboration with the national and provincial departments of health. HST supported the National Department of Health in the conceptualisation of SyNCH (Synchronised National Communication in Health) which is the core digital backbone of the Central Chronic Medicines Dispensing and Distribution (CCMDD) programme. Currently, HST supports CCMDD in four districts and 378 facilities.

Community-based health services delivered by HST Outreach Teams

Isibhedlela kubantu events are critical for community HIV literacy education, wellness advocacy and bringing services to hard-to-reach places.

HST Outreach Teams' direct service delivery responds to community needs and synergises action with community partners. All clients receive general health literacy, screening and testing, and those diagnosed receive counselling and treatment literacy information, are initiated on treatment, and are linked to a facility convenient to them for lifelong care. The teams also trace patients with interrupted treatment, and test index contacts. Beyond this routine provision of comprehensive care, partnering with the Department of Health at commemorative events creates valuable opportunities to expand the reach of these services.

In a targeted intervention, 10 HST mobile clinics served as clinician-led pick-up points where patients could collect their medication to ensure continuity of care.

Community dialogues

Through focused listening, the community dialogue process enables communities and stakeholders to question and meaningfully discuss existing practices and their own thinking and behaviour regarding HIV treatment and support. Issues identified as challenges to community-based HIV treatment and support are discussed, and awareness can be built among stakeholders about how services can be adapted for success. The dialogues facilitate development of community-owned and community-driven action plans to address the key issues identified, and secure commitment and consensus from stakeholders on their contribution to sustainable activities.

The approach recognises the cultural context of knowledge and social practices required to effect behaviour change, and fosters a shared identification with and empathy for each other's human reality, perspectives, traditions and life circumstances related to health care.

HST has conducted multiple community dialogues under the auspices of various projects over many years, and included a 'how to' guide on running a community dialogue in a Community ART Services Desk Compendium and Toolkit produced in collaboration with the KwaZulu-Natal Department of Health as a comprehensive and easily accessible suite of resources and guidance that healthcare workers can use for optimal delivery of patient-centred care.

Peer-led initiatives: leveraging the skills and positioning of 'expert patients' to support fellow community members

In partnership with the Zululand Department of Health, the SA SURE project trained and placed nine Youth Peer Mentors in eight facilities in the district to provide case-management services to pregnant youth between the ages of 10 and 24 years. These services entailed providing education on pregnancy and the importance of early antenatal booking, treatment and care; issuing appointment reminders and following up on missed appointments; providing psychosocial support and adherence counselling, based on the Peer Mentors' previous experience; forming facility-based support groups to assist with disclosure, stigma and diagnosis acceptance; and mapping of community services as referral points for youth requiring additional support. The Mentors were given tools for collection of data on HIV testing, linkage to care, viral load monitoring, and early infant diagnosis. Post intervention, the linkage rate improved from 88% to 100% in the eight clinics, and there was a noticeable decrease in positive PCR results among babies borne of these young mothers.

To strengthen male health services and to increase demand for and continuity of HIV treatment among men, HST implemented the Coach Mpilo, MINA for Men's Health, and Phila Ndoda campaigns as part of SA SURE programming.

HST's MINA Campaign champions promote health among men in uMgungundlovu.

The Coach Mpilo case manager model offers interventions co-crafted by men to provide male patients with knowledge about HIV and the importance and benefits of treatment adherence, and to support disclosure of their HIV status to partners, family and friends. HIV-positive men who are stable on treatment are assigned as 'Coaches' of newly diagnosed men and those who have returned to care after a treatment interruption.

The MINA campaign – led by the Department of Health, with support from PEPFAR and the US Agency for International Development (USAID) – publicises and provides links to the clinic-based Coach Mpilo services. It offers direct links to clinicians, access to support groups, and education on men's health topics, while sharing the stories of men who are successfully living with HIV and creating spaces where men can support each other through friendship and a sense of community. MINA-supported districts and facilities have seen strong growth in HIV testing and linkage to treatment, and improved continuity of care.

Phila Ndoda is a movement focused on restoring positive male figures in society and fostering healthier communities through men protecting themselves and their loved ones from infectious diseases and other health conditions. In 2019, HST instituted a Phila Ndoda men-friendly mobile clinic in Zululand, attached to Queen Nolonolo Clinic in Nongoma Sub-district. Men's health services were delivered by an all-male team in spaces where men congregate, such as hostels, taxi-ranks, taverns and sports fields, with HST's male Driver Mobiliser rallying community members through a loud-hailer. Following increased demand for this mobile service point, it operated five days a week. The median number of men tested for HIV per quarter more than doubled, and was sustained above 800 tests per quarter by March 2021.

Youth Ambassadors

From 2018 to 2020, SA SURE Youth Ambassadors (YAs) formed part of the district teams supporting the Department of Health's Adolescent and Youth-friendly Services (AYFS). Their role was to engage with youth in Youth Care Clubs, run activities in facility-based Youth Zones, mobilise HIV Testing Services, distribute condoms, and educate groups about teenage pregnancy, gender-based violence and general health issues. When young clients in need were identified, the YAs facilitated their access to health and social services through referrals to the clinic and relevant government departments, and recruited them for support groups and psychosocial advice where necessary. Youth Ambassadors were given daily targets to elicit HIV testing among children younger than 15 in facility Youth Zones. YAs were employed in three KwaZulu-Natal districts and were supported with technical assistance by HST's AYFS Co-ordinators during frequent site visits.

While running a holiday programme at the end of 2019 in eThekwini, the YAs found additional ways to relieve the plight of several orphaned and vulnerable youngsters – donating their own funds to do so.

Stakeholder engagement
Stakeholder engagement requires an understanding of the contextual dynamics of each district to ensure community entry, and familiarity with all stakeholders implementing services that feed into our project workplan. Knowing which structures are functioning and how they operate enables prioritisation of key collaborators to improve performance, avoid duplication, and close any gaps in the various programmes.

"It's time to move ownership into the communities so that they lead initiatives. We should capacitate them so that they have the skills and confidence to teach other community members. You will notice a difference when you promote communities' self-mobilisation. As they lead, so they come to own the initiatives. Whenever we want to implement a programme, consultation with the community is very important because that will guide us on what their needs are. We all need each other, one way or another, and in the end, we win through partnership."

Primrose Sithole: HST Cross-site Stakeholder Liaison Specialist for Zululand and eThekwini

People are at the centre of change.

Science tells us how, but not why. It is people – with our insights, activism, hope and ingenuity – who will ground scientific knowledge to infuse it with meaning. Community actors as partners generate jointly formulated solutions and ensure accountability.

Achieving the resilience and sustainability of South Africa's HIV response demands that collectively, we rise again, draw on the knowledge we have and the lessons learnt, and maintain momentum towards eliminating HIV as a major public health challenge.

References