To celebrate the launch of a t-shirt collaboration between artist John Booth and the National AIDS Trust, we spoke with three young people about what living with HIV is like today
Thanks to a series of near-miraculous medical breakthroughs, HIV has become a manageable, even mundane health condition. If you’re on effective treatment, you can’t pass the virus on, and you can expect to lead a long and healthy life. But unfortunately, societal attitudes have lagged way behind the science: the level of public understanding on the subject is still shockingly poor, and most people living with HIV today will tell you that stigma is a more impactful problem than the condition itself. To make matters worse, not everyone has equal access to the life-saving testing, treatment and preventative medicine which have made ending the epidemic an achievable goal.
This is particularly true on a global scale, but even in the UK, women and ethnic minorities are being diagnosed later, struggling to access testing and PrEP [a highly effective preventative treatment], and accounting for an increasingly large portion of new cases. Thanks to chronic underfunding of sexual health services and the government’s ‘hostile environment’ policies towards migrants, these disparities are only getting worse.
One organisation fighting to achieve HIV justice is the National AIDS Trust. Ahead of World AIDS Day on the first of December, the charity has partnered with John Booth, an artist who has previously worked with brands such as Fendi, Sunspel, and Walter Van Bierendonck. Booth has created an exclusive piece of art which will be printed and sold on t-shirts by Everpress. Bold and colourful, the design will be available to buy on EVERPRESS until November 17, with all the funds going towards supporting the National AIDS Trust.
Last week, a group of three young people living with HIV took part in a photoshoot to promote this collaboration, along with Booth himself. We spoke to them about the enduring problem of stigma, racial and gender inequality, what they would like people to understand about the condition, and the blessings that HIV has brought to their lives.
ELLIE HARRISON, HIV ACTIVIST AND YOUTUBER
“When I was diagnosed with HIV, honestly it was the worst day of my life. But the level of opportunity it’s opened up for me has been insane. The person that I have become because of this condition is incredible. It is not a death sentence. I think for a lot of people living with HIV, it's like a rebirth.
“I was diagnosed when I was 21, after doing a routine at-home test. Now I have spent the last five years living and dating with HIV, which really opens you up to a world of stigma. I’ve gone on dates before where people have refused to kiss me or just didn’t want to be near me. Sometimes when people find out I have HIV, they very quickly block me. To begin with, I also had a lot of self-stigma, and I think the only way to get through that is to really understand where that stigma comes from and what it means to you.
“There are still a lot of differences between the gay and straight communities when it comes to HIV. The accessibility of PrEP is one thing. In my experience, and based on what friends have told me, PrEP is just not regularly offered to straight people – you would have to go out of your way and request it. It’s this incredible medical advancement, but so many people don’t even know it’s there.
“We have to break down the stigma of talking about sexual health. So many people are ashamed to get tested. If you go to a GUM clinic they’ll provide you with information, but if you don’t even make it through the front door, then all you’ll have is what you learned in a PSHE lesson when you were 14, which doesn’t really carry through to your adult life.
“Part of the problem is that sexual health services have been so underfunded. The average waiting times to get an appointment are shockingly poor, and a large proportion of the UK does not offer at-home tests. Accessibility to testing is the thing I would like to change the most, as well as just generally encouraging people to get tested. There’s no shame in going to get tested and knowing your status – you are checking on your health; it’s just like brushing your teeth.”
ROBERTO TOVAR, FOUNDER OF NÚMERO DE SERIE, AN ORGANISATION WHICH PROMOTES HIV AWARENESS IN BRITAIN’S LATINX COMMUNITY
"Recently, [in 2018-2019], there has been a decrease of HIV infections overall but an increase within Latin American demographics. I would say that being Latin American is still not a recognised ethnic group by the government in Britain, and when you don’t know how many people really are in the country, you don’t know what their needs are and it’s difficult to allocate resources. That’s one of the biggest issues we face, as a community which is underfunded, underrepresented, and underpaid.
“There are big language barriers when it comes to accessing healthcare, as well as cultural barriers – I’m from Mexico and the way that we interact with our healthcare professionals is different to how it is here. Sometimes, the people my organisation works with are in the UK on a tourist visa, and they worry that if they go to an appointment with a doctor, they might be sent back to their country or jeopardise their immigration status.
“This means that some people try to get medicine from different sources, like their friends – I’ve been asked ‘Hey, I ran out of medication, you think you can lend me a few pills until I get some more?’ They shouldn’t have to do that. There is a hostile environment towards migrants which creates a barrier to accessing healthcare. Part of the work we do is telling people that regardless of their immigration status, they can still access HIV medication and care.
“On a more personal level, stigma still affects the way I interact with people. In my day to day, I don’t really think about living with HIV, but when I’m dating, hooking up or trying to relate to other queer people, I am reminded of it and not always in the most positive or optimistic way. But I think I have learned to navigate this and also have empathy, because not everyone has the same access to information as I have now, as someone who works in sexual health.”
MERCY SHIBEMBA, HIV ACTIVIST AND YOUTH ADVOCATE
“I’ve lived with HIV my whole life, so I don’t really have a before and after story – it’s something which has always been with me and shaped who I am. When I tell people I have HIV, they still very much have this sense of feeling sorry for me, or sometimes they will ask ‘what’s your prognosis?’ They suddenly assume all of these things about my life that I don’t think is a true reflection of it.
“Obviously it’s not ideal to have a lifelong condition and I’d rather not deal with that. But my sense is that I’ve got a lot more from HIV than it’s taken from me. When I think about the friendships that I have built with people who I would never otherwise have met and the person that it’s made me, I’m grateful for the opportunity I’ve had to live such a full, rich life.
“My sense is that I’ve got a lot more from HIV than it’s taken from me”
“There are a lot of race and gender inequalities when it comes to HIV. What I find increasingly frustrating is that we have all the tools that we need to end the epidemic: we have PrEP, we have really good, quick testing, and we have medication for people living with HIV which means they can’t pass it on. We have all of these things. But still, only certain groups of people have access to them.
“Black women are left behind in terms of access to testing, diagnosis and all the benefits of treatment. In terms of access to PrEP we know that women are often not even offered it or seen as being at risk of acquiring HIV. We also know that women, and Black communities, are disproportionately diagnosed late – often they will present to GPs and other health services with various problems, but they’re still not offered an HIV test. So it annoys me that we have everything that we need, but the thing that's stopping us is the fact that we live in a world where there's a real complacency about inequality.”