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Report by: 26th May 2025 | Elri Voigt

Provincial data for key indicators in children living with HIV in South Africa- We can do better!

2024 data on how each province is doing for key HIV indicators for children <15, based on the Thembisa estimates. (Table created by Spotlight using data from the Thembisa 4.8 model)

Moving from targets to reality

Triple Elimination will not be achieved solely through policy. It requires:

• Integrated service delivery and multi-sectoral collaborations
• Strong community systems and client-centred care
• Reliable data and accountability
• A focus on equity, reaching the last mile

Africa has the tools, knowledge, and commitment to end mother-to-child transmission of HIV, syphilis, and hepatitis B. What is needed now is integration, investment, and implementation at scale and in communities. Every pregnancy reached, every infection prevented, and every child protected brings us closer to a generation born free of preventable disease.

South Africa has made one of the most significant global investments in HIV treatment, building the largest antiretroviral therapy (ART) programme in the world. These investments have saved millions of lives, strengthened public health systems, and demonstrated what is possible when political commitment, funding, and science align. Yet sustaining these gains remains a growing challenge. Funding constraints, health system pressures, workforce shortages, and persistent social barriers threaten long-term outcomes. As the HIV response evolves, one question becomes increasingly clear: How do we protect and sustain what has already been achieved? The answer lies in placing communities at the centre of the HIV response.

Why Sustainability Depends on Communities

HIV treatment does not exist only within clinics or policy frameworks. It is lived daily in households, informal settlements, workplaces, and social networks. When communities are marginal to the response, investments struggle to translate into lasting outcomes. When communities are central, those same investments are amplified, protected, and sustained. Community-centred approaches strengthen sustainability in several critical ways.

HSPN Strengthen Retention in Care

Loss to follow-up remains one of the most significant threats to treatment outcomes. Missed appointments and treatment interruptions are rarely driven by lack of clinical knowledge alone. They are shaped by stigma, transport costs, unstable livelihoods, food insecurity, and competing life pressures. Community-based support, through peer navigators, community health workers, adherence clubs, and local networks, helps identify disengagement early and respond in realistic, humane ways. This prevents treatment interruptions before they become clinical failures, protecting both individual health and system investments.

Trust Makes Treatment Work

Trust is foundational to effective HIV care, yet it cannot be manufactured through policy alone. Communities play a central role in building trust between health systems and the people they serve. When treatment messages, follow-up, and support are delivered by trusted community members, services feel less punitive and more supportive. This trust improves uptake, adherence, disclosure, and long-term

Key Pediatric HIV Cascade Figures (South Africa)

• Diagnosis: Approximately 83% to 85.5% of children living with HIV are aware of their status.
• Treatment Coverage: Roughly 63% of children living with HIV are on ART.
• Viral Suppression: Only about 70% of children on ART are virally suppressed.
• Mortality: An estimated 2,100 children die from AIDS-related causes annually.

Challenges in the Cascade

• Treatment Adherence & Formulation: Suboptimal, non-child-friendly, or difficult-to-administer drug regimens have historically contributed to low suppression rates.
• Loss to Follow-up: High rates of attrition occur between diagnosis, linkage to care, and sustained retention in care.

HSPN will not keep quite! 

In 2023, AVAC and advocacy partners assessed the STI prevention landscape across East and Southern Africa. By documenting existing resources, gaps, and challenges, these analyses laid essential groundwork for developing an informed, strategic, collaborative advocacy agenda. Across the seven countries assessed, health professionals and key population informants alike reported lack of knowledge and inadequate testing for STIs. Low testing rates were attributed to a range of challenges including lack of awareness of the need for testing, limited supplies of test kits, testing services being inaccessible or unaffordable, and STI-related stigma. Newer, faster, and cheaper diagnostic tools could help address some of these problems, as could preventive or therapeutic STI vaccines. Several analyses also noted the need for more up-to-date, targeted STI data to inform national policies. 

“We remember when we started HIV advocacy, we were told that HIV is not an emergency. This is the same thing we are hearing, that STI is not an emergency. We want to say that STI is an emergency. And if we are not treating STI as an emergency, we will actually risk to be where HIV is now with STI.” Mandisa Dukashe, HIV Survivors and Partners Network, South Africa.

Your can read about this STI advocacy work here:  https://www.stiwatch.org/moving-the-sti-research-development-and-diagnostics-agenda-forward/

Example Text

HSPN is led by female nurses that are living openly with HIV in HIV mixed status marriages. These 2 warriors took a decision to mobilise more women across the country in 2020 and established a virtual safe space (support group) for women and girls living with HIV. The purpose of the group was to render non judgmental support and inspiration, encourage each other to remain on treatment, ensure  members are virally suppressed, and promote disclosure to sexual partners. These nurses dedicate their time to answer medical questions related to treatment initiation for newly diagnosed members, treatment switches for those with side effects or resistant to 1st line, interpreting blood results, encouraging members to demand Viral load blood taking and also insist on getting their blood results shared with them. Not a single member knew about U=U when the group was started, less than 60% knew when should their viral load bloods be taken, less than 50% knew their current viral load results and more than 40% had an undetectable viral load. To date the group has about 250 members, only 30% of the members disclosed their status to their sexual partners when the group was started, and now more than 60% have disclosed. Members are posting pictures of their viral load results in the group as soon as they get them from their Dr's and from the clinics, and more than 90% of the members have an undetectable viral loads. That is taken as a success and celebrated by all and is motivating everyone to adhere to treatment and to stay suppressed. 

ASSESSING PATIENTS EMPOWERMENT AND INVOLVEMENT IN HIV/AIDS MANAGEMENT AND PREVENTING TRANSMISSION 

Mandisa Nikita Dukashe¹   

High levels of patients engagement in HIV care are considered essential to maintaining optimal health benefits, and patients who are on treatment and retained in HIV care are known to have better health outcomes. The main objective of this study was to understand whether patients with HIV are empowered and involved in managing their HIV/AIDS illness and prevention of its transmission. The study adopted a qualitative phenomenological approach to understand clients’ empowerment and involvement in HIV care, the researcher conducted 8 focus group discussions and 3 in-depth interviews with two distinct groups: clients who attended medical appointments and collected their treatment from the health facility and health care providers who serve these clients. Study findings showed that powerlessness extends well beyond strictly medical and treatment-related issues. Study participants expressed or demonstrated to have at some point lack of knowledge that is a threat to self-management, might impact negatively on their treatment outcome and their ability to prevent transmitting HIV. The key recommendation is to ensure that the health care system makes information available to patients (and their families) to make informed decisions when selecting a health plan, hospital, and choosing alternative treatments. The system should also ensure patients are empowered about their role in preventing transmission of HIV. This should include information describing treatment side effects, potency of drugs, alternative medicines, connection between treatment adherence and virus suppression in preventing HIV transmission, and patient satisfaction surveys which are also critical to monitor the quality of care provided to individual patients. Strengthening patient’s involvement in decision making should be considered “patient centred” in ensuring patients see themselves as part of the team, not as passive recipients of care. More vulnerable patients may feel less secure in health care interactions, and these feelings may be amplified if patients have an unreasonable impression of what constitutes a ‘good’ patient; thereby leading to disengagement in care. Insights from our findings can inform the development of patient-centred, tailored messages and other compliance strategies to better assist non-complying patients to adhere to HIV treatment and care. 

Keywords: HIV, health care system, empowerment, patient engagement, patient centred

The U=U campaign is based on a simple message - an undetectable viral load in people living with HIV, equals an untransmissible virus. The U=U campaign, has the power to motivate people living with HIV to adhere to ARVs, achieve viral suppression, and subsequently lead long and healthy lives while preventing HIV transmission to sexual partners and their babies. The message is simple to understand. An undetectable viral load in people living with HIV equals an untransmissible virus. The success of this concept, however, depends on strict adherence to antiretroviral therapy (ART). Most people who take ART as prescribed become virally suppressed, that is to say the medicines suppress the virus to such an extent that it cannot be detected with standard tests and that there is so little of it in the body that people can’t transmit it. ART is not a cure however, and if you stop taking it the virus can quickly start multiplying again, both making you infectious and harming your own health.

This is not some abstract theory. As an HIV prevention and treatment advocate and a nurse clinician in an HIV discordant marriage for 17 years, I am living proof that U=U works. Adherence to ART and viral suppression protected my husband from contracting HIV from me and prevented my two beautiful daughters from becoming HIV-positive. Large studies (like HPTN052 and  Partner) of sexual HIV transmission among thousands of couples where one partner was living with HIV and the other was not, were undertaken between 2007 and 2016. There were no genetically linked infections while the HIV-positive partner was virally suppressed. Recent studies such as Opposites Attract, and PARTNER2 (an extension of PARTNER focusing on HIV-discordant MSM couples), report similar results. None of these studies observed any linked infections while the HIV-positive partner was virally suppressed and the couples were engaging in sex without condoms and not using pre-exposure prophylaxis (PrEP – ARVs taken to prevent infection). The numbers The latest estimates from the Thembisa model of HIV in South Africa, released last week, indicates that around 7.6 million people were living with HIV in South Africa in 2019 – this amounts to around 13% of the population. With these numbers in mind, it is crucial that we empower the 7.6 million people living with HIV with knowledge about the benefit of ARVs to their health and the power they have to prevent onward transmission. South Africa has done a lot to invest in its HIV programme and that the country is working towards achieving the UNAIDs 90 90 90 targets. These targets include ensuring that 90% of people living with HIV know their HIV status, 90% of people who know their status are on ART, and 90% of all patients receiving ART are virally suppressed by 2020. According to estimates from the Thembisa model 92% of people living with HIV in South Africa in 2019 knew their status. While presenting the new figures, Dr Leigh Johnson from the University of Cape Town said this is good since it means we have met the first of the UNAIDS targets, but, he went on to say, we are unfortunately not doing well on the second target with only 71% of people diagnosed with HIV on treatment. The country exceeded the third target with 91% of people living with HIV and on treatment virally suppressed. Even though the viral suppression rate among those on ART has exceeded the target, the indicator must be interpreted in the context of low reported ART coverage. If you take into account all people living with HIV in South Africa (diagnosed and undiagnosed, on treatment and not on treatment), around X% of everyone living with HIV are not virally suppressed – and thus potentially infectious. This is the gap that U=U aims to close. 

Gaps in current HIV prevention programmes The South African government has highlighted a number of HIV prevention programmes to reduce the annual number of new infections to under 100 000 by 2022. These programmes include prevention of mother-to-child transmission, condom distribution, voluntary medical male circumcision (VMMC), and PrEP. I have nothing against these programmes, but it is frustrating to see that there is no program directed towards promoting HIV treatment adherence and viral suppression, which has been proven to be 100% effective in preventing HIV transmission. I applaud the government for the UTT policy that seeks to ensure people living with HIV start treatment as soon as they are diagnosed. More strategies like CCMDD were put in place to promote treatment access, but I think these programs can work best if they can integrate U=U, a client centred program to empower PLWHIV and give them an opportunity to be involved in their management and in leading the prevention efforts.

 In addition to people living with HIV who have stopped or never started treatment, there are also those that are in care and collecting their treatment regularly, but whose viral loads are not monitored timeously. The first national analysis of repeat viral load testing in South Africa showed that 85% of people on HIV treatment with increasing viral loads received further monitoring, but only half did so within the recommended time. This means that in some cases increased viral loads, which means people become infectious, may not be detected before HIV transmission takes place. Clearly we have to ensure that everyone on treatment gets regular viral load tests, results are communicated with the clients and abnormal results are actioned timeously.

A powerful solution I believe people living with HIV, given a chance, have the power to lead the HIV prevention agenda successfully. I am saying this because across all the studies I cited above, there were no linked HIV transmissions observed between mixed-HIV-status partners when the partner with HIV was virally suppressed. In ART we have the tools to allow almost everyone to achieve viral suppression and in our laboratory service we have the capacity to give everyone regular viral load tests. What is needed is for government to make these services available to people in a way that keeps people coming back. But we also need to empower people with knowledge. The goal of the U=U campaign is to increase awareness about the relationship between viral suppression and its ability to halt the sexual transmission of HIV. Specifically, awareness that people living with HIV who take their ART daily as prescribed and achieve and maintain an undetectable viral load cannot sexually transmit HIV to their partners.