High rates of HIV stigma revealed by first ever Stigma Index global report

The People Living with HIV Stigma Index has released its first ever global report based on data from 25 countries, and the findings make for difficult reading.  

What is the story about? 

GNP+’s People Living with HIV Stigma Index began in 2008 as a way for people with HIV to document levels and effects of HIV-related stigma. Until now, stigma indexes were done per country. This new global report presents data from 25 countries that have conducted a Stigma Index between 2020 and 2023. Twelve countries are in Africa, six in Latin America, six in Eastern and Central Europe and one in Asia. Just under 31,000 people with HIV participated in the research.  

Why is this important? 

HIV-related stigma and discrimination is one of the biggest barriers to ending AIDS. It’s the reason why many people are reluctant to test for HIV or disclose a positive status, use HIV prevention methods like PrEP or take lifesaving HIV treatment.  

The HIV Stigma Index is the largest body of evidence on HIV stigma. It can be used to advocate for policies, laws and funding to achieve a stigma- and discrimination-free world for people with HIV.  

What does the report say? 

Internalised stigma  

Overall, 85% of participants agreed with at least one statement showing they feel internalised stigma. Around 38% agreed with the statement ‘I am ashamed that I am HIV-positive’. This is used by UNAIDS as a key measure for internalised stigma.  

Around 40% had not told anyone they had HIV.  

Over a third (35%) had changed their behaviour in the past 12 months due to their HIV status. Not having sex was mentioned by 19% of participants. 

One in five said their lives had been negatively affected by their HIV status over the past 12 months. Difficulties finding love (25%) and coping with stress (23%) were most frequently mentioned. 

Although 93% were or had been on HIV treatment, 27% had interrupted or stopped it at some point. The most common stigma-related reasons for this were being worried that someone would discover their HIV status (35%) and not being ready to deal with having HIV (23%). 

Internalised stigma reduced with age and the length of time since HIV diagnosis. 

Stigma in community settings  

Around 24% had experienced HIV-related stigma and discrimination in a community setting in the past 12 months. 

People making bad remarks or gossiping about them was the most common experience. Other people in the local community and family members were the groups most likely to make stigmatising remarks. 

Stigma in healthcare settings 

One in four participants (25%) had experienced HIV-related stigma and discrimination from staff in health services unrelated to HIV. And 13% had experienced it from HIV care staff. The most common experiences were being gossiped about or staff disclosing HIV status without consent.  

Among people who had stopped HIV treatment at some point, 34% said restarting was difficult due to the fear of being stigmatised by health workers. 

Just under 4% had been forced to test for HIV or disclose their status in the past 12 months. The most common reason for this was to access healthcare. 

Stigma experienced by groups most affected by HIV 

Gay men, men who have sex with men, sex workers, transgender people and people who use drugs who have HIV experienced higher levels of HIV stigma than other people with HIV. This was true for both internalised and community stigma.  

Younger people with HIV (aged 18-24) experienced the highest levels of internal and external HIV stigma. 

Many people from groups most affected by HIV also experienced stigma for reasons other than their HIV status. Half of transgender people reported stigma, 40% of gay men and other men who have sex with men, 27% of people who use drugs, and 26% of sex workers. The most common experiences were verbal harassment, being gossiped about by family members and being excluded from family activities.  

What does this mean for HIV services? 

The high levels of internalised stigma show how important it is for people with HIV to be able to access support for their mental health. Without this, people with HIV are more likely to refuse or stop treatment and experience mental health issues. Mental health support is especially important for people with HIV who are gay, transgender, a man who has sex with men, a sex worker or someone who uses drugs, particularly if they are young. 

It is important to do more to address HIV-related stigma and discrimination. This includes showing the damaging effects to policymakers who are able to make changes to discriminatory laws that help to drive stigma. It also includes community-led monitoring to document and address stigma in healthcare and other community settings. This can also be used as a way to advocate for funding for stigma-reduction activities.  

Individual country reports can be found at www.stigmaindex.org. They can be used as a baseline to measure progress against. Case studies on advocacy strategies are included at the end of the global report.