The HIV Stigma Index 2.0 report launched on Wednesday reveals that, despite progress since the 2014 study, significant efforts are still needed to reduce stigma, improve healthcare experiences, and support the mental well-being of people living with HIV (PLHIV).
Today, the PLHIV sector, led by the National Association of People Living with HIV and AIDS (NAPWA), unveiled the HIV Stigma Index 2.0 report.
This comprehensive study measures and documents the stigma, discrimination, and rights violations faced by PLHIV in South Africa.
Conducted with the technical support of the Human Sciences Research Council (HSRC), the South African National AIDS Council (SANAC), and international partners, the report highlights the persistent challenges encountered by PLHIV, particularly among key populations and young PLHIV.
The National Chairperson of PLHIV and Project Director for the Stigma Index 2.0, Mluleki Zazini, believes the study marks a significant milestone in ensuring that the voices and lived experiences of PLHIV are at the forefront of research, advocacy, and policy development.
Zazini described the study as groundbreaking on a global scale, as it includes adolescents aged 15 to 17, acknowledging the country’s high HIV prevalence among young people and the urgent need to address stigma in this demographic.
The approximately 5 000 participants were primarily young adults, with almost 70% aged between 25 and 49.
Most participants were assigned female at birth, and a similar proportion identified as women, while smaller groups identified as men or as transgender.
The study also found that more than a quarter of participants fell into at least one key population group, including sex workers, people who use drugs, men who have sex with men, and transgender individuals.
Key findings
A new study has revealed mixed experiences among PLHIV in South Africa, highlighting both progress and persistent barriers linked to stigma and disclosure.
More than half of the participants disclosed their HIV status voluntarily, mostly to family, friends and partners.
However, disclosure in workplaces and schools remained very low.
The study also found that a small portion also reported that their status had been shared without their consent, mainly by family members.
While many experienced supportive reactions from those close to them, fewer reported positive experiences when disclosing to acquaintances.
The study found that experiences of external stigma have declined compared to previous years, though discriminatory remarks and verbal harassment still occur.
Internalised stigma continues to affect participants’ confidence, relationships and sense of self-worth, with young people and key populations – such as sex workers and people who use drugs – most affected.
The study also found that the stigma in healthcare settings persists, with some participants reporting judgmental behaviour from healthcare workers.
Fears of stigma contributed to delayed treatment initiation for almost a third of respondents, and some admitted to interrupting their treatment.
Key populations and persons with disabilities faced multiple layers of discrimination, including exclusion from family activities and fear of seeking care.
Tuberculosis (TB)-related stigma remains another challenge, with many reporting being gossiped about after a TB diagnosis.
Participation in HIV support groups was relatively low overall, though higher among transgender participants.
Zazini said that stigma and discrimination continue to undermine South Africa’s response to HIV, discouraging people from testing, seeking treatment or disclosing their status.
“These barriers not only affect individual health outcomes but also contribute to the ongoing spread of HIV,” he warned.
Recommendation
The study outlines several recommendations to tackle the stigma and discrimination still faced by PLHIV in South Africa.
Key proposals include strengthening community-based referral programmes that support voluntary testing, informed consent and safe disclosure, alongside expanding counselling and peer-support groups.
It also calls for stronger anti-stigma campaigns and gender-sensitive policies in communities and health facilities, backed by multisectoral collaboration across government, civil society and PLHIV networks.
To reduce internalised stigma, the report urges the rollout of mental health and peer-led support initiatives.
In healthcare settings, the study recommends training health workers on patients’ rights and the need for non-discriminatory, gender-responsive care, as well as establishing confidential systems to report stigma and rights violations.
Targeted interventions for key populations – such as sex workers, people who use drugs and transgender individuals – are also emphasised.
Women-led PLHIV networks are encouraged to take the lead in educating women and adolescents on their rights and access to care.
The study notes that these efforts are essential to improving health outcomes and building a society free of HIV-related stigma.
Click here on the link below to access the presentation and other documents. – SAnews.gov.za
