HIV Stigma Index 2.0: a pivotal report on discrimination faced by people living with HIV in South Africa

Today marks a significant step forward in the fight against HIV-related stigma as the National Association of People Living with HIV and AIDS (NAPWA) launched the HIV Stigma Index 2.0 report. This landmark study, led by individuals living with HIV, delves into the stigma, discrimination, and rights violations prevalent among People Living with HIV (PLHIV) in South Africa.

In a country where the HIV prevalence rate remains alarmingly high, this first-of-its-kind initiative aligns with the Greater Involvement of People Living with HIV and AIDS (GIPA) principle, empowering communities to lead the way towards a stigma-free future.

The report was developed in collaboration with various partners, including the Human Sciences Research Council (HSRC), the South African National AIDS Council (SANAC), and international agencies like Johns Hopkins University. It builds upon the findings of the 2014 study while shedding light on ongoing challenges—particularly those faced by key populations and young people living with HIV.

“This study represents a major milestone in ensuring that the voices and lived experiences of People Living with HIV remain at the centre of research, advocacy, and policy development,” said Mluleki Zazini, national chairperson of PLHIV and project director for Stigma Index 2.0. He pointed out that the project is globally pioneering, as it includes adolescents aged 15–17, recognising the urgent need to address HIV stigma in this vulnerable demographic.

According to Duncan Moeketsi from NAPWA, the study encompassed over 5,000 participants across all nine provinces, focusing on 18 districts that include both urban and rural areas. The demographics reveal a diverse group, with a predominant age range of 25–49 years and a variety of gender identities among respondents, highlighting the multifaceted nature of the PLHIV community.

Although over half of the participants disclosed their HIV status, primarily to family and friends, the report highlighted a significant drop in voluntary disclosure in professional (9.3%) and educational (1.5%) settings. Unintended disclosures also remain a concern, with some individuals reporting that their status was revealed without consent.

When examining stigma experiences, approximately 6.1% reported external stigma over the past year, down from 14.3%. This reduction suggests progress, yet stigma still manifests in derogatory remarks and verbal harassment. Conversely, internalised stigma, which negatively impacted self-confidence and well-being, particularly among younger individuals and key populations, remains entrenched.

Healthcare interactions were not immune to stigma, with nearly 8% of participants encountering discrimination when seeking HIV-specific services. Moreover, fear of stigma is a barrier to treatment, leading to notable delayed or interrupted care among more than one-third of participants.

For key populations, such as men who have sex with men, transgender individuals, and people who use drugs, the report noted that experiences of stigma are compounded. Numerous participants expressed feelings of exclusion from family activities and faced verbal harassment due to their identities, highlighting the urgent need for tailored interventions.

The report concludes with a series of recommendations aimed at dismantling the barriers of stigma and discrimination faced by PLHIV. Strengthening community-based referral programmes, increasing awareness through anti-stigma campaigns, and providing targeted mental health support were among the highlighted initiatives. These calls to action resonate particularly loudly, as the South African context demands a concerted effort from all sectors—government, NGOs, and community groups alike.

“These barriers not only affect health outcomes but also contribute to the continued spread of HIV,” Zazini reiterated, stressing the importance of a unified response to these systemic issues.

As South Africa continues to grapple with an HIV epidemic, the launch of the HIV Stigma Index 2.0 is a clarion call for renewed commitment and action against stigma and discrimination. Together, with the voices of PLHIV leading the way, a future free from stigma can be envisioned.