Pretoria, Tuesday, 9 December 2025 — Today, the People Living with HIV (PLHIV) sector, led by the National Association of People Living with HIV and AIDS (NAPWA), launched the HIV Stigma Index 2.0 report, a comprehensive study that measures and documents the stigma, discrimination, and rights violations experienced by People Living with HIV in South Africa.
The study holds particular significance as the first PLHIV-led study in South Africa, aligning with the principle of the Greater Involvement of People Living with HIV and AIDS (GIPA), which empowers PLHIV networks at the country level to lead the study’s full implementation.
This initiative reaffirms the principle of the National Strategic Plan for HIV, TB and STIs—to let communities lead—and emphasises the leadership of PLHIV in building a stigma-free future. These are principles set forth by the international partnership of the Global Network of People living with HIV (GNP+), the International Community of Women Living with HIV (ICW) and the Joint United Nations Programme on HIV/AIDS (UNAIDS), with the support of Johns Hopkins University.
Conducted with technical support from the Human Sciences Research Council (HSRC), the South African National AIDS Council (SANAC) and international partners, the report highlights the persistent challenges faced by PLHIV, particularly among key populations and young people living with HIV. Despite progress since the 2014 study, significant work remains to reduce stigma, enhance healthcare experiences, and support the mental well-being of PLHIV.
“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,” says Mluleki Zazini, the national chairperson of PLHIV and project director for Stigma Index 2.0.
“Furthermore, the study is globally groundbreaking. Like the 2014 Stigma Index in South Africa, it included adolescents aged 15–17, recognising the country’s high HIV prevalence among young people and the urgent need to address stigma in this demographic,” he adds.
According to NAPWA’s Duncan Moeketsi, who is also the co-principal investigator of the study, the study adhered to a global standardised methodology, incorporating over 5,000 participants from all nine provinces, with a specific focus on 18 districts, both urban and rural.
“Most participants (69.7%) were aged 25–49 years, 62.1% were assigned female at birth, and 36.4% were assigned male at birth. The majority (62.1%) identified as female, 33.0% as male, 2.8% as transgender, and 1.5% did not identify as female, male, or transgender. About 28.5% of participants belonged to at least one key population group, including sex workers (14%), people who use drugs (10%), men who have sex with men (5.7%), and transgender individuals (5.4%),” says Moeketsi.
Key findings of the study
HIV disclosure:
The study found that over half of the participants voluntarily disclosed their HIV status, primarily to family members (73.2%), followed by friends (52.6%), and partners (51.2%). However, voluntary disclosure was low in professional settings, at 9.3% to employers, and in educational settings, at 1.5% to teachers and 1.0% to classmates.
Unintended disclosure: A few (3.3%) of participants reported that their HIV status was disclosed without their consent, primarily by family members.
Positive experiences: About 65.5% of participants reported positive experiences when disclosing to close contacts, and only 40.8% had positive experiences when disclosing to people they did not know well.
External stigma and discrimination:
Experiences of stigma: Approximately 6.1% of participants reported experiencing external stigma in the last 12 months, a decrease from 14.3% in previous years. Common forms included discriminatory remarks (4.9%) and verbal harassment (3.6%).
Internalised stigma:
Impact on well-being: Internalised stigma negatively affected self-confidence (12.9%), relationships (11.4%), and self-respect (9.9%). Younger individuals (18-24 years) and key populations, such as People Who Use Drugs (PWUD) and Sex Workers (SW), reported higher levels of internalised stigma.
Feelings of Shame and Guilt: About half (48.6%) of participants found it difficult to disclose their HIV status, and 17.3% felt guilty about their status.
Healthcare Interactions:
Stigma in Healthcare settings: About 7.8% of participants experienced stigma when seeking HIV-specific healthcare, 3.2% were advised not to have sex and 3.1% were gossiped about.
Treatment Hesitancy: About 32.1% of participants delayed starting treatment due to fear of stigma, and 12.6% reported interrupting their treatment.
Multiple layers of stigma among Key Populations and Persons with Disabilities:
Key populations, including Men who have Sex with Other Men (MSM), Transgender individuals, and PWUD, faced additional stigma due to their identities. For example, 23% of PWUD reported exclusion from family activities, and 15.8% of transgender individuals experienced verbal harassment.
Among all People Living with HIV, 10.9% reported that they were persons with a disability. Overall, 9.5% of persons with disability experienced at least one form of stigma and discrimination within the last 12 months. They faced stigma from family members who made discriminatory remarks or gossiped (10.6%), and felt excluded from family activities (9.2%). About 5.2% felt afraid to seek healthcare services.
TB-related stigma:
Experiences of stigma: Among all PLHIV, 16.8% of participants had been diagnosed with TB, and 37.9% reported being gossiped about due to their TB status. TB-related stigma remains a significant concern, particularly among PWUD and SW.
Membership to support groups:
Support groups: Only 38% of participants were members of HIV support groups, with higher participation among transgender individuals (50%) and lower among PWUD (36.6%).
Zazini added that stigma and discrimination against PLHIV remain significant barriers to effective HIV prevention, treatment, care and support services in South Africa, where HIV prevalence is among the highest in the world.
“These barriers manifest in various ways, including social exclusion, fear of disclosure, workplace discrimination, and unequal access to healthcare services. As a result, many individuals hesitate to seek healthcare services like testing or treatment due to concerns about how they will be perceived by their families, communities, and employers.
“This reluctance not only affects their health outcomes but also contributes to the continued spread of HIV, as undiagnosed or untreated individuals are more likely to transmit the virus,” he said.
Recommendations
To address the challenges of stigma and discrimination faced by PLHIV, several key recommendations have been outlined. Firstly, it is crucial to strengthen community-based partner and social network referral programmes that promote voluntary testing, informed consent, and supported disclosure. This can be achieved by providing resources such as counselling, peer-led support groups, and community workshops to ensure confidentiality and psychosocial support.
Additionally, efforts to reduce external stigma should focus on increasing community awareness through evidence-based anti-stigma campaigns and developing gender-sensitive, culturally appropriate policies to address stigma in healthcare and community settings. This requires multisectoral collaboration and monitoring frameworks, involving stakeholders such as the Department of Health, the Department of Social Development, the Department of Education, the PLHIV networks, traditional leaders, NGOs, and community-based organisations.
To address internalised stigma, mental health and peer-led support programmes should be implemented to promote psychological well-being, reduce self-blame, and empower PLHIV. Relevant stakeholders working with thePLHIV networks, mental health advocacy groups, the Department of Health, and SANAC should join efforts to achieve an inclusive society that is stigma free.
In healthcare facilities, training should be provided to healthcare workers on reducing stigma, patient rights, and providing gender-responsive care. Independent and confidential systems should also be established to monitor and address stigma, discrimination, and rights violations within health facilities, with stakeholders including the Department of Health, healthcare training institutions, professional councils, PLHIV-led organisations, and human rights bodies.
Targeted, culturally sensitive interventions should be developed for key populations, including PWUD, SW, and transgender individuals, with active involvement from PLHIV-led networks. Relevant stakeholders include PLHIV-led networks, NGOs, the Department of Health, and academic institutions.
Lastly, PLHIV networks, especially those led by women living with HIV, should lead education and training initiatives focused on rights, policies, and health access for women and adolescents living with HIV across all age groups. Key stakeholders in this initiative include women-led PLHIV networks, the Department of Women, Youth and Persons with Disabilities, the Department of Health, and educational institutions.
This study represents a collective effort to advance human rights, improve health outcomes, and foster a society free from stigma and discrimination. The dedication and passion demonstrated by all involved will serve as a strong foundation for future interventions aimed at promoting dignity, equality, and justice for people living with HIV.
Click here to access the fact sheet and other documents.
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For media enquiries:
| SANAC | HSRC | |
| Nelson Dlamini Cell: +27 78 731 0313 Email: nelson@sanac.org.za | Adziliwi Nematandani Cell: +27 82 765 9191 Email: anematandani@hsrc.ac.za |
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