Thanks to antiretroviral drugs, HIV is undetectable in 97 per cent of those diagnosed
On a recent weekend Ashley Dunn, a 48-year old designer, had unprotected sex with an HIV positive man he met in a bar. The man warned him of his HIV status and Dunn weighed up the risks and decided to sleep with him anyway.
“He said, ‘I’m undetectable which means I can’t pass it on’,” says Dunn. “Then he told me, ‘you’re actually more of a risk to me than I am to you. I know my status and have been checked. You haven’t’.”
Not so many years ago this act could have dealt a sure-fire death sentence to Dunn. It was as recent as the 1980s when HIV swept onto these shores, decimating communities and striking fear into a generation.
Back then we didn’t even know if you could catch HIV by drinking from the same glass - so condomless sex was suicidal. There was no treatment, no cure and no hope.
Gareth Thomas and HIV
Last month former Welsh rugby captain Gareth Thomas announced that he had been living with HIV for years. On the day of his declaration he competed in a 140.6-mile Ironman triathlon, one of the world’s most gruelling races.
Here was a man at absolute peak physical fitness saying to the world he had been living with HIV for years. The impact of this disclosure has been huge.
The BBC screened a documentary about Thomas’s life in the run up to him going public. Interestingly, his actual illness hardly featured. A single pill of antiretroviral therapy (ART) taken daily means his life expectancy is normal.
It also means that his viral load, or level of HIV in his blood, is low enough to be considered undetectable. That means he and his husband Stephen, who is HIV negative, can have unprotected sex without fear of infection.
HIV - from a plague to a manageable disease
Today there are around 101,600 HIV positive people living in the UK. A decade ago these people would have been on a complicated cocktail of up to 20 different drugs a day, dealing with the devastation of the illness alongside a catalogue of unpleasant side effects from the medication.
Now, like Thomas, most take a single pill and have a normal life expectancy - the virus all but invisible. Next year, subject to approval from licensing authorities, this medication should be available in the form of just one single, monthly injection.
“The treatment of HIV has been absolutely one of the most spectacular treatment progressions in medicine,” says Professor Chloe Orkin, consultant in HIV medicine at Barts Health NHS Trust. “To go from a plague to a manageable disease where people can live a normal life expectancy within the space of such a short period of time, is one of the greatest medical trajectories of all time.”
'I lost so many friends to the infection'
Orkin trained to be a doctor in the largest hospital in the township of Soweto in South Africa in the 1990s. It was a time when about a third of all people on the wards were infected with HIV. Of her own tight-knit group of friends she lost about 10 to Aids.
“My friends were all at variable stages of the infection and there was no treatment,” she says. “It was totally devastating. All my friends died except for one who managed to get on to an early AZT drug trial. He later killed himself because he had survivor’s guilt.”
In 1998 Orkin came to the UK to complete her training. At 29 she took up her post at Barts where she became its youngest ever HIV consultant and created what is now a world-renowned research unit there.
In 2017 Orkin, as chair of the British HIV Association, was one of the very first medical professionals to put her head above the parapet and use the word “zero” risk as opposed to “negligible” risk and unequivocally confirm that it is now completely safe to have unprotected sex if the level of virus in the blood is low enough.
Zero risk of transmission
“Studies from hundreds of thousands of sex acts show that if the virus is undetectable then it cannot be passed on during sex without a condom. We say Undetectable = Untransmittable, or U=U,” says Orkin. “And we don’t say negligible risk. We say zero risk. The language is very important.”
The latest data shows that the UK has smashed all UN targets for HIV. And London, in particular, has become a global beacon for best practice (in 97 per cent of people diagnosed, the virus is now undetectable).
But while most of the gay community is clearly clued up and accessing excellent care, there are some small, but still worrying, indicators. The number of late diagnoses, for example, now stands at 43 per cent. This is due to demographics such as women, heterosexual men and black African males being less likely to believe they are at risk.
A late diagnosis means not only are some people actually very sick when they seek help, but they have more opportunity to unknowingly infect others.
Reaching a younger generation
Jo Josh was a successful crisis management consultant from Surrey when she received the shock of finding out she was HIV positive in 2008. “I am a blonde, middle class woman. I wasn’t in an at-risk group,” she says.
“Sometimes you can feel as if you aren’t part of the conversation. It revolves around white gay men talking about white gay men. But worldwide 53 per cent of HIV cases are actually women.
"One of the reasons women don’t figure more prominently in the dialogue could be because we worry about the impact our diagnosis could have on our children. It’s one thing to talk about your diagnosis if you’re a single man, but quite another if you’ve got kids at school.”
Ashley Dunn also worries that for all the progress we’ve made a rather more lackadaisical attitude may have set in amongst the younger generation of gay men who weren’t around to witness the terrifying, “silence=death” public information films of the late 1980s.
“There’s a term ‘bug chasers’ - these are people who don’t care, who’d have bareback sex [without a condom] without asking any questions,” says Dunn. “If you look on dating apps there are plenty of people who state they want to have sex with HIV positive people only.”
Tired of being scared
Rui Cavolo a 31-year old perfume retailer from Selfridges, has seen this, too. “I know some people who are just so tired of being scared of catching HIV that they kind of hope that they get it because then they can just relax. There’s a bit of nihilist attitude too. Right now it feels that London is rife with HIV.”
Days after Gareth Thomas came out as HIV positive so too did gregarious US hairdresser Jonathan van Ness, one of the presenters of the reality show Queer Eye. It felt like a very different to the message to the one Gareth Thomas sent.
“It would be wrong to say it was HIV glamorisation but he came out to quite a bit of fanfare, saying how proud he felt to be part of the HIV community,” says Cavolo. “I think he intended the message to be, it’s not dirty to have HIV, but it actually felt like he was saying it’s good to have HIV - almost like a celebration.
"Try going to certain parts of the US and say you have HIV. I’m not sure you’d be allowed to cut anyone’s hair.”
A drug for safer sex
Cavolo, who has had various HIV scares and whose sex life ranks him as “high risk”, has been taking medication called PrEP since last year. This stands for Pre-exposure Prophylaxis and is a pill that HIV negative people can take prior to sex to reduce the risk of transmission. Cavolo is taking part in an impact trial of 13,000 people in the UK.
“PrEP gives me a second layer of protection,” he says. “Even though there are drugs to make it undetectable, contracting HIV still changes your life. It’s an incurable disease, I don’t want to catch it. Having unprotected sex filled me with a lot of guilt. PrEP has enabled me relax about fear of infection.”
There has been much controversy about this PrEP trial. While PrEP is available on the NHS in Scotland, trials are still being run in England and Wales. Earlier this month the BBC reported that at least 15 people have actually contracted HIV while waiting to get accepted to receive the drug.
“There has been a lot of criticism because essentially PrEP has already been shown to be effective,” says Orkin. “As well as Scotland it has been implemented in large areas of Paris without any problem. It looks like a delaying tactic in order to save money.”
The most demonised of illnesses
Despite huge leaps in treatment, HIV still remains the most demonised of illnesses. Because it was originally seen as a gay disease and because it is sexually transmitted, it was born in a perfect storm of ignorance and homophobia. One hangover from this is the idea that HIV positive people are dangerous and contagious.
These attitudes became entrenched and people with HIV are discriminated against regularly. In July this year a hospital in Bristol, for example, apologised to an HIV positive patient for cancelling her surgery twice because they believed theatre would need a “deep clean” before they were willing to touch her. And an HIV positive pilot was recently refused clearance to fly when Easyjet cited possible side-effects from his medication as an excuse.
Rosalie Hayes from the National Aids Trust takes on these cases of discrimination frequently. “Unless you are in the army or working in very specific health care roles, there is no reason why your employer would ever need to ask about your HIV status, but many still do,” she says.
'The stigma was the worst thing'
Certainly in Thomas’s case stigma was by far the worst thing about having the illness. “I was fearful of everything,” he says in the film. “Rejection, people not want to be in the same room as me. I was fearful of waking up every single day to what was going to be in the newspaper. I was living with the deep, deep shame of living with HIV.”
Orkin agrees. “Stigma is still the number one problem,” she concludes. “We have worked out how people can live a physically healthy life with HIV. The challenge now is to reduce the impact mentally. Stigma leads to people not getting diagnosed. If you get diagnosed and start treatment early you live a normal life expectancy. If you get diagnosed late you die.”
Fast facts: people with HIV in 2018
Eastern and southern Africa: 20.6 million
Asia and the Pacific: 5.9 million
Western and central Africa: 5 million
Latin America: 1.9 million
The Caribbean: 340,000
Middle East and North Africa: 240,000
Eastern Europe and central Asia: 1.7 million
Western and central Europe and North America: 2.2 million
Source: UNAIDS Global Aids Update 2019