Stigma is a set of negative and often unfair beliefs that a society or group of people have about something. For HIV, these unfair views are based on outdated information, coming from a time of fear when the virus was generally misunderstood.
A lack of understanding about how HIV is transmitted is common, for example, with little awareness of what it means to be undetectable. A belief that HIV is still terminal and little knowledge of modern medication is another area of common ignorance.
HIV-related stigma can lead to people thinking it’s unwise or even unsafe to talk about their HIV status.
Self-stigma
Self-stigma, also known as internalised stigma, happens when a person from a stigmatised group, for example a person living with HIV, internalises negative public attitudes and believes them to be true. This is very common and can have a range of impacts on a person’s mental health and self-esteem, and what they feel comfortable doing, such as starting a relationship or applying for a job. Self-stigma can even occur if a person has not directly experienced stigma or discrimination themselves.
Also, because HIV is most commonly passed on through sex, and sex itself is often stigmatised in society, this adds further to the stigma and shame around HIV.
Groups most affected by HIV
Anyone can get HIV, but globally certain groups of people are more affected than others. For example, there are particularly high HIV rates in Eastern Europe, Central Asia and Africa, and there are increasing levels in the Middle East. Young girls and women in West, East, and Southern Africa are also more likely to be affected.
Historically, gay and bisexual men have been disproportionately affected by HIV, but in 2023 in the UK heterosexual males were more likely to have been newly diagnosed with the virus. This is partly to do with less awareness around HIV testing and safety among heterosexual couples.
In general, the people most affected by HIV tend to be those who are already more likely to face discrimination and stigma because of their gender, gender identity, sexuality, race, class and age. This means it’s harder for them to access healthcare and get the necessary information to keep them healthy, including HIV tests and medicine.
Campaigns to end HIV stigma
Over the years, the rights of people living with HIV have drastically improved. Advances in medication, awareness raising, and campaigning, including on U=U, have helped reduce HIV stigma and bust damaging myths about HIV. But there is still some way to go.
The Terrance Higgins Trust launched a television appeal in Scotland in 2023 claiming stigma is now more harmful than HIV itself. According to the campaign, just one third (35%) of people in Scotland would be happy to kiss someone living with HIV, despite it being known since the 1980s that HIV can’t be passed on through saliva.
Almost half (46%) of people in Scotland said they would be ashamed to tell other people they were living with HIV.
Many high profile advocates, such as rugby player Gareth Thomas, stars of RuPaul’s Drag Race, and other prominent figures are standing up and speaking out against HIV stigma. Popular TV series like It’s a Sin are reeducating people about the history of HIV. Eastenders even featured a character who finds out he’s living with HIV, written in consultation with HIV charities. All of this is helping to stamp out stigma.
The Global Network of Young People Living with HIV (also known as Y+ Global) campaigns to improve the lives of young people with HIV and address stigma. The READY Movement supports young people to get involved in campaigning.
The Salamander Trust works to ensure that women with HIV have their voices heard and their needs met. Their podcast series shares experiences of women living with HIV around the world: The WHAVE.
Chiva’s youth committee often get involved in campaigns against HIV stigma and even created an Education Toolkit to enable teachers to educate pupils with the facts about HIV and inspire them to become the generation to end HIV stigma. If you’re 13-17, find out how to get involved in the Chiva Youth Committee.
