Following the news that the details of HIV patients were accidentally leaked this week, Brigette Bard of BioSure UK examines why stigma and intimidation of people with HIV still exists and how it may prevent those worried, seeking testing or medical interventions…
Before you read this post, stop and try and visualise what someone with HIV looks like.
Man or a woman? Black or white? Young or old? Homeless? Someone that looks like one of your mates?
I may as well have asked you to just visualise a person on the street, because regular readers of this blog will know that HIV can affect anyone - regardless of their sexual orientation, where they live, what they do for a living, how much money they have, or how much sex they have.
Transmission of HIV can happen from one sexual encounter with a person who is HIV positive – and Public Health England reports that one in four people with HIV don’t know they have it.
I don't want to scaremonger, I want to address the stigma and misinformation that exists around HIV – it’s one thing to inform people of the correct information around how HIV is transmitted, what the symptoms are, what the treatment is and the prognosis (and if you’d like more information, you can find that here or here.) But it’s a completely different thing to try and change peoples’ opinions – to break through their unconscious bias, to reduce fear around HIV and to reduce stigma regarding people that are HIV positive.
In 1989, Princess Diana opened an HIV/AIDS centre in London and made front page news for shaking hands with people with HIV. The British public were shocked that a princess would touch people with HIV.
Twenty six years later how much have things changed?
According to The National AIDS Trust (NAT) most recent study into public perceptions of HIV, less than half (45%) of people in the UK know how HIV is transmitted and almost a third (28%) incorrectly think HIV can be spread through impossible means such as kissing, sharing glasses, sharing a toilet, sneezing or coughing; a worrying increase of 10% since 2010.
One in 10 people incorrectly think people with HIV will die within three years when, in fact, treatments allow people with the condition to have a normal life expectancy.
The three main routes of HIV infection are condom-less sex between a man and a woman, condom-less sex between two men or sharing needles/syringes, but more than a third (35%) of those surveyed by NAT couldn't identify these routes.
Another report from The International Planned Parenthood Foundation, states people with HIV in the UK, face stigma as a result of these misconceptions. The report shows 21% of people living with HIV had been verbally assaulted or harassed, 12% had been physically harassed because of their HIV status and 77% know they have been gossiped about.
More than two in five people with HIV (44%) feel ashamed of their HIV status as a result.
But encouragingly, 45% of people living with HIV had personally confronted, challenged or educated people who were stigmatising them and 84% actively support other people living with HIV.
According to the Royal College of Nursing (RCN) there are a number of reasons why there is so much stigma surrounding HIV :
- HIV and AIDS-related stigma plays into and reinforces existing prejudices about gender, race, sex, and sexuality
- It is associated with behaviours that may be illegal, such as IV drug use or sex work
- It is also associated with behaviours that some religious or cultural groups forbid, such as gay sex or extra-marital sex
- It involves topics such as sex that many people find embarrassing to talk about
- Misconceptions, fallacies, myths, and incorrect information about HIV lead to irrational fears
A few weeks ago, I asked Francoise Barre-Sinoussi, the woman who discovered HIV back in 1983, why, more than 30 years later, this stigma still exists. You can read her whole interview here, but she said: “I guess we are still suffering of the early years of HIV... in the early 80s it was written everywhere in the media that HIV/AIDs was a disease affecting certain populations: in particular the gay population and the intravenous (IV) drug users and that's really remained in the mind of civil society in general. They still feel somehow that, first of all, it's a disease that particularly affects those people that are vulnerable but that do not belong to the regular population.
“I have that kind of discussion, for example, with taxi drivers when I speak with them. You know, taxi drivers they like to speak, they say "what are you working on?" and after a while I say "I'm working on AIDS" and they say "Oh! You're working on this disease that are affecting those gay people ... you better work on other disease like cancer or any other disease that's affecting us! (An appalled is expression upon her face). So that means a lot to me.
“That makes me really mad. Really mad.”
It makes me really mad too because stigma and intimidation of people with HIV can also prevent those worried that they might have been exposed to the virus, seeking testing or medical interventions.
This stigma and misinformation has to be tackled, it is something we at BioSure are passionate about and, in the second part of this blog, I’ll make some suggestions for how we can help things to change… Watch this space.