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HIV Researchers Create Chelsea Garden to Raise Awareness of Disease Stigma
Imperial College London
By Kate Wighton
May 17, 2018

Scientists and designers have teamed up with young people living with HIV to create a garden at this year’s RHS Chelsea Flower Show.

The garden aims to highlight the successes and challenges still faced by young people living with HIV.

The theme of the garden is HIV: stigma and cure. It was conceived by Professor John Frater from the University of Oxford and Professor Sarah Fidler from Imperial, who jointly lead the NIHR BRC CHERUB collaboration (Collaborative HIV Eradication of Reservoirs UK BRC) – a UK network of internationally recognised doctors and researchers from the NIHR Biomedical Research Centres at Oxford, Cambridge and London working together with patients to find a cure for HIV infection.

A major global problem

Professor John Frater said: "HIV remains a major global problem even though it is much less in the news. There are 37 million people living with HIV, and around two million people get infected every year – that’s one person every 15 seconds of every minute of every day. A child is infected every three and a half minutes.

"Despite the dramatic success of HIV treatment, which has changed HIV from being a death sentence into a manageable but lifelong condition, there’s still an enormous amount of HIV-associated stigma. Coming to terms with HIV-related stigma is a key part of helping all people living with HIV to live a healthy life and to take their daily medication. Which is something we wanted to highlight in through this garden."

Professor Sarah Fidler said: “The first important step towards finding a cure for HIV requires years of daily HIV medication which leads to very low levels of virus in the body. Once this has been achieved, we are searching for new ways to try and cure HIV. The NIHR-supported CHERUB collaboration is working together to look for new treatments and tests that might allow people to stop their medicines and remain free from the virus.”

Charting journey: About the garden

Created by designer Naomi Ferrett Cohen, this is the first show-garden she has created since graduating from London College of Garden Design.

A plant from the garden casts shadows on wooden deckingThe garden charts the journey of a young person living with HIV, exploring the stigma and marginalisation they may encounter along their journey from the safety and protection of attending an NHS clinic, towards a normal life of acceptance and freedom. Young people from CHIVA (the Children’s HIV Association) were involved in the design of the garden, sharing their thoughts and experiences of growing up with HIV.

The timing of the garden also coincides with the results of the ‘RIVER’ trial which has taken place in London and the UK – this is the first formal randomised trial exploring a possible cure for HIV infection. Results will be released in spring 2018.

‘Having different conversations about HIV has been part of my emotional healing’ Bakita Kasadha - HIV activist and CHIVA Associate

Living with HIV is a very complex thing; sometimes it has an impact on my day, sometimes it doesn't. In the past it has impacted me unexpectedly and negatively when I've overheard someone making a derogatory statement about HIV (whether in person or online) – often the person wouldn't have even known that I was HIV positive.

Now the impact is less unexpected and more in my control, because of my choice to be involved in HIV advocacy. The derogatory statements still exist, but I am less impacted by them (if at all). Now that I am living with openly, well and happy with HIV, I am conscious of not wanting to erase the experiences of others.

This is one of the things I appreciate about the Royal Chelsea Flower Show garden, because it publicises the perspective and experiences of the children and young people living with HIV who aren't able to speak publicly about them.

The theme of the garden is acceptance and overcoming stigma, because those are still some of the biggest challenges we face as people living with HIV, in the UK. It was great being in the room as the young people from the Children's HIV Association (CHIVA) discussed their ideas for the garden and what they wanted it to represent. And it was an important reminder that although physically and medically we are in a much better place, emotionally and mentally things can be and are still very difficult.

Medically/physically, living with HIV has been a pretty smooth journey for me, the biggest challenges were the misconceptions of others and my own misconceptions about what HIV is. I'm not in that space anymore, but it has been an incredible long road. A road of doubting who I am, what I deserve and my own worth and ultimately unlearning and relearning who I can be as a person living with HIV.

What helped me overcome my own self-stigma was being connected to people who have kept me abreast of knowledge. Whether it's being clued up on my rights (both in education and employment); knowing about U=U (Undetectable=Untransmittable); or being armed with an awareness of how the medicines actually works.

Most importantly, it has been seeing other HIV positive people living their best lives. Having different conversations about HIV and about the array of people living with HIV has all been a part of my emotional healing and it's emboldened me.

Article submitted by Sarah

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