A survey of people living with HIV, which we've released to mark World AIDS Day, has revealed alarming levels of stigma faced by people across the UK, with nearly three quarters of those surveyed (74%) reporting they’ve experienced stigma or discrimination due to their HIV status.
Our data also revealed that over half of people living with HIV had experienced discrimination in dating and relationships (62%), sex (61%) and while accessing healthcare (59%).
This comes despite the incredible medical progress around HIV that’s been made over the last 40 years which now means that people living with HIV can live a normal lifespan. Effective treatment suppresses the amount of virus in the body to an undetectable level. This keeps people living with HIV healthy and means the virus can’t be passed on to partners.
Our survey also looked at the areas where people living with HIV experience stigma, finding:
- One third (33%) had experienced HIV discrimination from friends.
- Almost one third had experienced HIV discrimination in the workplace (30%) and from family (30%).
When asked what the fact that people on effective HIV treatment can’t pass on the virus means to them, respondents said it:
- means I can enjoy sex and not feel judged (57%),
- motivates me to stay on treatment (55%),
- has a positive impact on my mental health (53%).
The fact that people on effective HIV treatment can’t pass on the virus is undeniably life-changing for people living with HIV – it has power to transform their reproductive, sexual and social lives. This message also has the capacity to change the hearts and minds of the general public, but far too many people still believe what they learned about HIV in the 1980s.
In fact, our survey found that public knowledge on HIV is lagging woefully behind medical advancements – over three quarters (86%) of people living with HIV think the public don’t know the difference between HIV and AIDS. HIV and AIDS are two different things: HIV is the virus, while AIDS is the collection of illnesses caused when HIV is left untreated and weakens the immune system.
In the 1980s, most people living with HIV were eventually diagnosed with AIDS, but developments in treatment mean that very few people in the UK will develop an AIDS-related illness.
Our Chief Executive Ian Green said: 'It’s extremely saddening to hear that stigma remains a big issue for people living with HIV in the UK. We experience it every time someone cruelly rejects us on a dating app, when someone in healthcare takes extra precautions while taking our blood and when we hear a joke where HIV is the punchline.
'It’s clear that poor knowledge and outdated beliefs on the virus are continuing to fuel stigma, because if people knew the truth about HIV, they’d know there’s no reason to discriminate against me or anyone else living with the virus.
'The results from our polling shows how much more we have to do to tackle the abhorrent stigma associated with HIV. When I was diagnosed with HIV in 1996 I was given just six to eight years to live, but I’m still here today living a fulfilling life, which so many of those lost to the virus before treatment never got the chance to do. Tackling stigma needs to be a priority on World AIDS Day, and every day. Play your part by challenging misconceptions about HIV and telling as many people as possible about the reality of the virus today.'
Stephen Fry said: 'I have been involved in the fight against HIV since the 1980s and it’s remarkable how much an HIV diagnosis has transformed since then thanks to effective treatment, but extremely saddening to see that the stigma hasn’t gone anywhere. It’s completely unacceptable that the vast majority of people living with HIV face stigma and discrimination – we clearly need to redouble our efforts to ensure those affected by the virus can thrive, not just survive.
'People living with HIV are leading the way when it comes to challenging negative perceptions of the virus, but they cannot bear this burden alone. Every one of us must pledge ourselves as allies against stigma and keep shouting about the facts on HIV. Because we will never truly end the epidemic without eradicating the stigma.'
Drag Race UK star Charity Kase said: 'When I was diagnosed with HIV, I went through a very dark time and struggled to come to terms with it because of the stigma around the virus. The stigma and other people’s misconceptions about HIV are far worse than the virus itself.
'I take one pill a day which keeps me healthy and means that I can’t pass on HIV to anyone else. Not won’t or might not, but definitely can’t pass it on. This is exceptional for people living with HIV – it allows us to explore our sexuality without fear, boosts our confidence and helps us come to terms with our diagnosis.
'I’m proof that HIV in no way holds you back in life, but sadly that’s not how other people see the virus. Terrence Higgins Trust’s polling shows it’s more important than ever to educate yourself and others on the facts about HIV. Education is one of the most powerful tools we have to break down stigma.'
Ellie Harrison, a 25-year-old straight woman living with HIV said: 'HIV is a heavily misunderstood and stigmatised virus. Some people think they can get the virus from kissing or just being around me – none of that is true at all.
'Once I went on a date with someone and after I told him I was living with HIV, he didn’t want to touch me because he was scared of getting it. The reality is I’m one of the safest people to have sex with because I know I cannot pass on the virus, thanks to effective treatment.
'The new polling from Terrence Higgins Trust shows we need to normalise conversations about HIV and keep shouting about the progress we’ve made around the virus so we can create a safe space for people to talk openly about what it’s like to live with HIV and end stigma for good.'