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South Africans Living with HIV Lead the Charge in the New Stigma Index 2.0
Today brings a powerful moment in South Africa’s ongoing fight against HIV-related discrimination. The National Association of People Living with HIV and AIDS has released the HIV Stigma Index 2.0 report. What sets this milestone apart is who led it. People living with HIV themselves took the reins to show the country what stigma really looks like and why it needs to end.
A community-driven movement
South Africa continues to face one of the highest HIV prevalence rates in the world. Yet the people most affected are stepping forward to drive the solution. Guided by the GIPA principle, the HIV Stigma Index 2.0 ensures that lived experience shapes the future of policy and care.
The report was built in partnership with respected national and global institutions, including the Human Sciences Research Council, the South African National AIDS Council, and Johns Hopkins University. It updates an earlier 2014 study and brings new voices into focus. For the first time, adolescents aged fifteen to seventeen were included because stigma hits young people hard and early.
Mluleki Zazini, national chairperson representing people living with HIV, described the report as a major step that puts community knowledge at the centre of South Africa’s HIV response.
More than 5,000 voices across the nation
Researchers collected stories and data from all nine provinces. Participants represented a full spectrum of identities and experiences. Most were aged between twenty-five and forty-nine, but the study also included youth and individuals from key populations, such as transgender people, people who use drugs, and men who have sex with men.
Disclosure of HIV status is an emotional decision for anyone. The findings show that while more than half share their status with loved ones, fewer feel safe being open in workplaces or schools. Unintended outing still happens too often when private health information is shared without permission.
Progress and persistent challenges
There is good news. External stigma, such as verbal harassment, has more than halved since 2014. However, the pain of stigma still lingers inside many who live with HIV. Internalised stigma continues to harm confidence, mental well-being, and social connection, especially among young people.
Even in healthcare settings, judgement has not disappeared. Nearly eight percent said they faced discriminatory treatment during HIV care. Fear of encountering stigma means some delay or interrupt treatment that keeps them healthy. This has long-term consequences not only for individuals but also for the country’s efforts to reduce new infections.
Families and communities remain another battleground. Some participants spoke about being excluded from family gatherings or treated differently at home because of who they are and their HIV status. It reminds us that stigma rarely exists in isolation. Identity and sexuality can deepen discrimination and isolation.
A call to action for South Africa
The report does not stop at revealing the problem. It sets out solutions that can change lives. Better mental health support, stronger community referral systems, and anti-stigma campaigns are among the key recommendations. These goals require every sector to play a role, from government and health workers to school leaders and neighbours.
As Zazini noted, stigma is not only a social issue. It affects health outcomes and allows HIV to continue spreading. Addressing prejudice is essential to ending the epidemic.
South Africa has come far, yet this report shows the journey is not finished. By listening to those living with HIV and protecting their rights, a country where everyone can live with dignity becomes possible.
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Source: IOL
Featured Image: HSRC
