The National Association of People Living with HIV and AIDS (NAPWA) has launched the HIV Stigma Index 2.0, a landmark study documenting the stigma, discrimination, and rights violations faced by people living with HIV (PLHIV) across South Africa. This is the first HIV research in the country fully led by PLHIV networks, reflecting the principle of the Greater Involvement of People Living with HIV and AIDS (GIPA).
Conducted with technical support from the Human Sciences Research Council (HSRC), the South African National AIDS Council (SANAC), and international partners, the study surveyed over 5 000 participants across all nine provinces. The research included a focus on key populations, young people, and vulnerable groups such as sex workers, transgender individuals, and people who use drugs.
The report highlights persistent barriers faced by PLHIV, despite progress since the first Stigma Index in 2014. Over half of respondents disclosed their HIV status voluntarily, primarily to family and friends, but disclosure in professional and educational settings remained extremely low. While 65% reported positive experiences when disclosing to close contacts, only 41% had positive outcomes with less familiar individuals.
Internalised stigma remains high, affecting self-confidence, relationships, and self-respect, with young people and key populations disproportionately impacted. Around 32% delayed starting treatment due to fear of stigma, and 12% interrupted treatment at some point. Healthcare settings were not free from discrimination, with nearly 8% reporting negative experiences during HIV-specific care.
Key populations and persons with disabilities experienced compounded stigma. Transgender individuals, sex workers, and people who use drugs reported verbal harassment, social exclusion, and barriers to healthcare. TB-related stigma also emerged as a significant issue, affecting nearly 38% of participants diagnosed with TB.
NAPWA leaders emphasised the need for multisectoral interventions to address stigma and discrimination. Recommendations include community-led awareness campaigns, mental health and peer support programs, culturally sensitive interventions for key populations, and training for healthcare workers on stigma-free, gender-responsive care.
“This study ensures that the voices and lived experiences of people living with HIV remain central to research, advocacy, and policy development,” said Mluleki Zazini, NAPWA’s national chairperson. The findings underscore the ongoing need for concerted action to create a stigma-free society and improve access to care for all South Africans living with HIV.
