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HIV in the UK: Meet the young people changing social perceptions

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Nearly thirty years since the British Government’s Don’t Die of Ignorance campaign to raise awareness of HIV and AIDS, the virus seems to have largely disappeared from public attention.

However there have never been more people living with HIV in the UK than there are now. At the end of 2014, Public Health England discovered that around 1 in every 6 of the estimated 103,700 HIV positive people living in Britain were undiagnosed. There seems to be a worrying lack of awareness in society that needs to be addressed.

We no longer need to be afraid of HIV in the UK; there may not be a cure, but there is available treatment to help people with HIV to live long and healthy lives. Despite this, there seems to be a general reluctance to acknowledge and discuss the issue openly.

Sat in a bustling café in Brixton, I met with fashion designer Jacob Alexander and filmmaker Danny Germain to discuss the ways in which they are each tackling the issue. Both Alexander and Germain are drawing upon their personal experiences to create projects aimed at encouraging a more informed and open discourse about HIV.

Alexander was diagnosed as HIV positive on the morning of his 22nd birthday. At a time when he particularly needed the support of those around him, he received an unkind and insensitive reaction from his best friend. He reflected ‘it was really hard losing people… my best friend was completely different with me and that really hurt’. It highlighted an unnecessary discomfort with HIV that many people seem to share.

After being diagnosed with HIV, Alexander became frustrated by the approach medical staff took regarding his treatment. For the most part, he felt that they failed to provide him with sufficient emotional support, having a consistent focus on reducing the risk of him passing the virus on to others. He believes that ‘there is room for improvement for the wellbeing and care for people with HIV, definitely.’

Alexander launched The Positive Project on 25th May 2016 to coincide with the broadcast of a TEDx talk that he had delivered. The project runs alongside his menswear collection JACOB ALXNDR, which debuted at a show followed by a talk by Alexander on 9th June 2016. Utilising the power of technology and the selfie trend to reach global audiences, The Positive Project aims to educate others on HIV, break down the stigma and unite supporters of the cause worldwide.

The Positive Project’s app allows users to post selfies of themselves wearing a Positive Project T-Shirt on the app’s Selfie Map. Within the app, there is detailed information on HIV, advice on the protection against transmission of the virus, as well as details about HIV clinics and how to contact them. Alexander’s personal voice runs throughout the app, resulting in a powerful relatability to him and his story.

Alexander found inspiration from the 2005 film The Sisterhood of Traveling Pants to use fashion to reach international audiences. He was reminded of the film in January when he walked past a showing of it in Camden. Jacob said he thought “How can I get something around the world?” – ‘I was in bed and it just came to me, I thought “I know, I’ll make an app with selfies and T-shirts.” And it was actually a really good idea!’

Born as HIV positive, Germain felt a pressure to keep his HIV a secret from the majority of his friends and family until he was 22. He grew up hiding his HIV, but ‘struggled to see why this was something that I couldn’t tell everyone else.’

Two years in the making, Germain’s documentary follows his journey of publicly revealing his HIV. The documentary includes footage of him announcing to a large audience of friends and family that he is HIV positive at an event poignantly dated on the anniversary of his mother’s tragic death from AIDS.

Having wished to openly reveal his HIV prior to the making of his film but without knowing how to do so, Germain struggled to relate to the limited accounts of other HIV positive people that he found. Some clips that he had watched silhouetted speakers to protect their identity, and any examples of people talking openly were usually filmed a significant period of time after the speakers had first revealed their HIV. As a young person, Germain found it difficult to relate to either of these types of examples: ‘I never really saw a point at which that person must have gone… from one day living with it secretly, to one day living with it openly, and I wanted to find out all about their mind-set and how they did that. What did they think about it?’

By making this documentary, Germain hopes that his experiences can support other people living with HIV to become more comfortable talking about it. He was fortunate to have ‘received nothing but love and support’ when he publicly revealed his HIV. The fear of a negative reaction was nonetheless there beforehand, as he was aware of the stigma that has significantly affected Alexander and many others. Germain’s documentary holds an important message about recognising the progression in our society and looking past the judgemental views of some regarding HIV, to see the supportiveness and acceptance amongst others.

Since beginning work on the documentary and openly revealing his HIV, Germain has noticed others around him become more comfortable in talking with him about it. He considered, ‘if [somebody knows] someone with it, and they’re okay, I feel like they are far more likely to engage with it… as a friend they’re interested in you to make sure you’re okay.’

Having been HIV positive his whole life, Germain said: ‘I’ve not known a life without it… I don’t feel any different, this is just how it is, and that’s fine.’

As Alexander’s voice runs throughout his app, Germain’s documentary is also incredibly personal, and the two are providing insights into the realities of living with HIV. Their work encourages people to engage with the topic and recognise that HIV is not something to fear or avoid talking about.

If we avoid discussing HIV, we avoid learning about it. Education is vital for breaking down misconceptions surrounding the virus.

Alexander advised that ‘if you use the wrong kind of lube and the wrong kind of condom it will split, and it can also cause friction burns... friction burns are torn tissue, and torn tissue is a breeding ground for bacteria and HIV.’

It was stressed by both Alexander and Germain that it is hugely important for more people to familiarise themselves with the facts on HIV and to get tested for it.

Jacob Alexander and Danny Germain are incredibly inspirational young people. They are both dedicated to disproving and destroying the negative stigma attached to HIV, encouraging more awareness and understanding of it in society.

To find out more about HIV and Jacob Alexander and Danny Germain’s work, download The Positive Project app for free from the app store and keep a look out for Germain’s documentary which is coming soon.

Watch Jacob Alexander’s TEDx talk here.

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