Imagine being excluded from your place of worship, denied employment, or losing income, all because of your HIV status. This remains a reality for thousands of South Africans, according to the latest People Living with HIV (PLHIV) Stigma Index 2.0, which shows that discrimination, though reduced over the past decade, persists in homes, workplaces and health care settings.
Launched on Tuesday by the National Association of People Living with HIV and Aids, the index is a globally standardised tool that measures the impact of stigma, discrimination and human rights violations on people living with HIV. The latest survey includes 5,065 individuals aged 18 and older and 252 participants aged 15 to 17.
The report shows that external HIV-related stigma has improved significantly, dropping from 14.3% in 2014 to 6.1% in 2024. Yet internalised stigma remains stubbornly high: 48.6% of respondents reported experiencing shame, guilt or fear of disclosing their HIV status.
Key populations, including people who use drugs, transgender people, sex workers and men who have sex with men, experience far higher levels of stigma. Some reported exclusion from family activities, while transgender participants described facing verbal harassment.
The report also reveals concerning behavioural impacts:
- 32.1% delayed starting or returning to treatment
- 12.6% stopped treatment altogether
Participants described experiences of physical harassment, blackmail, exclusion from social events, being passed over for promotion or having their job descriptions changed due to their HIV status.
Despite these challenges, 65.5% reported receiving positive reactions when disclosing to trusted individuals, and 73.2% disclosed primarily to family members. However, 7.8% still encountered stigma in healthcare facilities, including gossip and moral judgment.
Why stigma threatens South Africa’s 2030 HIV goals
South Africa’s ability to end Aids as a public health threat by 2030, in line with the UN’s global ambition, hinges significantly on reducing stigma.
The UNAIDS 95-95-95 targets require that 95% of people living with HIV know their status, 95% of those diagnosed are on treatment, and 95% of those on treatment achieve viral suppression.
South Africa has the world’s largest HIV epidemic, with about 8-million people living with HIV and 6.2-million on antiretroviral therapy.
Ending Aids by 2030 is possible, but only if South Africa confronts stigma with the same urgency as treatment, prevention and funding.
Mluleki Zazini, national chairperson of PLHIV and project director for the Stigma Index 2.0, said stigma and discrimination remain major obstacles to HIV prevention, testing and treatment uptake.
“These barriers manifest in social exclusion, workplace discrimination, fear of disclosure and unequal access to health care,” he said.
He said many individuals hesitate to seek testing or treatment because they fear being judged, leading to late diagnosis and increasing the risk of onward transmission.
Participants reported being excluded from religious services, social gatherings and family events. Others said disclosing their status made them feel “dirty”, guilty or ashamed, with some choosing to hide their status from everyone around them.
Internalised stigma, characterised by shame, guilt and self-blame, profoundly affects mental health and overall wellbeing.
Key findings
- TB-related stigma remains high, especially among people who use drugs and sex workers
- 16.8% of participants had been diagnosed with TB
- Of those, 37.9% said they were gossiped about because of their TB status
- 23.1% felt “unclean” or dirty due to TB, and 23.5% reported being teased
- Only 38% of participants belong to HIV support groups
- Fewer than 48.3% were aware of the U=U (Undetectable = Untransmittable) campaign, pointing to major gaps in national HIV communication efforts
Recommendations
Researchers say urgent interventions are needed to:
- strengthen community-based referral programmes that support voluntary testing, informed consent and safe disclosure;
- address internalised stigma through mental health services and peer-led support initiatives;
- train healthcare workers to reduce stigma, uphold patient rights and provide gender-responsive, non-judgemental care;
- empower PLHIV-led networks, especially women and adolescent-focused groups, to drive education, rights awareness and community mobilisation.
“Ending Aids by 2030 is possible,” the report notes, “but only if South Africa confronts stigma with the same urgency as treatment, prevention and funding.”
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