‘It was terrifying’ – 40 years on from the discovery of HIV, life is very different

Today marks 40 years since scientists discovered that HIV causes AIDs – and now, the UK could be just a few more years away from stopping transmission altogether.

That is the hope of leading gay rights activist Jonathan Blake and the Terrence Higgins Trust.

Such a monumental achievement, almost within our grasp, highlights the stark difference in life for those with HIV – human immunodeficiency virus – in 2024 compared to 1984. 

Jonathan, 74, has experienced both. He was one of the first people diagnosed with what would become known as HIV in October 1982, and for decades has been a leading campaigner in raising awareness of the disease.

Forty years on, he has never forgotten the fear that stalked the gay community at the time.

‘It was terrifying,’ he says. ‘It was incredibly isolating – I felt like a modern-day leper. I was only 33 and felt like my life was over. I just thought nobody is going to want to know me, nobody is going to want to have anything to do with me.’

Jonathan believes he contracted the virus during a visit to a steam bath in San Francisco. In December, two months after his diagnosis, he made the decision to take his own life.

‘Then I heard the voice of my mother, Golda’ in my head saying “Jonathan, you clear up your own mess”. And I though “oh f***, I’m going to leave such a mess”, and I couldn’t do it.

‘But there was no support, no nothing.’

That changed soon after when friends of Terrence Higgins, one of the first people in the UK to die of an AIDs-related illness, got together and formed a trust in his name, offering support and advice.

Then, less than a year later, scientists made the game-changing discovery that a virus, then known as HTLV-3 and later HIV, caused AIDs. And while it did not immediately lead to a vaccine or a cure – something we are still searching for today – it did lead to life-saving changes in care.

‘One of the good things the government did do was they began giving money to Big Pharma [pharmaceutical companies] to find out what was the cause, and find the drugs that could treat it,’ says Jonathan.

‘But I think the most important thing they did was actually start to give money to drop-in centres like the Terrence Higgins Trust, the London Lighthouse. Suddenly, there was financial support for these organisations, which meant that there were safe spaces for people to go, places to get support – support in terms of benefits, in terms of housing, and that was amazing.’

Not until the Nineties did the fruits of increased medical research begin to roll in, with the release of triple-drug therapy leading the way.

However, the discovery of HIV also led to one major, but rarely discussed, discovery in the medical world. One that would help save millions of lives in 2020.

‘[In the Nineties] viral load testing came in, and then they could actually test how much of the virus there was in a centilitre of blood, which is amazing,’ says Jonathan. ‘A centilitre is about the size of your fingernail, and within that there could be two million parts of the virus.

‘And you just think “I beg your pardon?”. It’s unbelievable.

‘It was a game-changer – and a game-changer that actually did change everything, because when Covid struck, if there hadn’t been viral load testing, there would have been no PCR tests.

‘It’s the same technology, but they never acknowledge it. HIV seems to be this forgotten pandemic that mustn’t be talked about.’

However, the opposite is needed to stop transmission before 2030. Communication is key, as is testing – which can be done for free at GUM clinics, charities and GP surgeries among other providers, while home-testing kits are also available.

Following years of campaigning in LGBTQIA+ communities, transmission is now lower in men who have sex with men than through sex between a man and a woman. 

Jonathan warns that stigma around HIV is still a huge problem when it comes to getting tested, particularly in heterosexual men.

‘When Covid came along you were encouraged to test and do your home testing, and that was a way of controlling it,’ he says. ‘[With HIV] there are very simple fingerprint tests that can tell whether or not you have the virus.

‘When It’s A Sin came out, there was suddenly a huge increase in people going and testing, something like 400%, and then it just died back again.

‘Stigma is the problem. Stigma is what kills.’

As Jonathan highlights, HIV is far from the only sexually-transmitted disease in the UK, and rates among others, such as gonorrhoea and syphilis, are soaring.

‘We’re not very good in this country talking about sex, and your own sexual health,’ he says. ‘But if you’re going to have sex, it makes sense to go to a sexual health clinic and get tested.

‘Learn your status, because once you know your status, you can deal with it.’

And today, in 2024, dealing with an HIV diagnosis is very different to what it was in 1984.

As witness to the evolution of treatment, Jonathan himself has been on a journey to manage his condition. 

From the days of doctors having nothing in their armoury to stop the ravages of a mystery disease killing young men across the world, an HIV diagnosis today offers a very different future. A future not too different from one without an HIV diagnosis, whether accessing treatment to stay healthy or knowing how to enjoy a fulfilling sex life safe in the knowledge the virus won’t spread.

And someday soon, hopefully that will be the case full stop.

Visit nhs.uk to find an HIV testing centre near you