When I was diagnosed with HIV just over 25 years ago, I was given eight years to live. HIV was tearing the gay community apart and my diagnosis was almost a relief after a decade trapped in a cycle of sex, shame, fear and regret. The situation seemed hopeless for me and for my friends.
Miraculously, treatments that worked were finally found the very year of my diagnosis, meaning I’ve lived to do so many things I never thought I would. I’ve turned 40 and 50, and will turn 60 and 70. That medical breakthrough in 1996 meant an HIV diagnosis was no longer a terminal one, but rates among gay men remained disproportionately high and stigma rife. Until, that is, we had the tools necessary (thanks to medical breakthroughs) to effectively prevent HIV transmission and set about ensuring they were used by those most at risk.
And that impact is being felt and changing lives. Now, 49% of new diagnoses in England are among straight people (with an almost even split between men and women), compared with 45% for gay and bisexual men. This is the first time in a decade that new diagnoses among heterosexuals are higher – marking a clear change in the shape of the domestic HIV epidemic. A change that must influence our response – and quickly – to ensure the government makes good on its commitment to ending new HIV cases by 2030. Because continuing to solely target those traditionally most at risk won’t work.
Thankfully, this isn’t about a huge spike in HIV diagnoses among heterosexuals. Instead, it’s primarily the result of a sharp, sustained drop in diagnoses among gay and bisexual men with a 71% fall since 2014. This shows what is possible. And, as someone who has received that life-changing HIV diagnosis, I understand the immense value of every transmission halted.
It’s worth noting that this shift is a true change in the epidemic rather than one manufactured such as that of Covid-19 lockdowns and resulting drops in testing. There was a 7% fall in HIV testing by gay men in sexual health clinics in England in 2020, but HIV testing rates in heterosexuals dropped by a third. This makes the news of a higher number of HIV diagnoses in heterosexuals than gay men even more significant.
The turnaround in fortunes coincides with three big changes for HIV in the UK in the past decade. First, we are increasingly getting better at HIV testing and offering free kits that can be ordered online and done at home. We used to wait weeks for test results – now it can be as little as 15 minutes. Second, the HIV prevention pill PrEP (pre-exposure prophylaxis) is highly effective at protecting against HIV. It is widely used by gay men but far less so by other groups.
Finally, we now treat people living with HIV as close to their diagnosis as possible. Early diagnosis and access to effective treatment means the virus is quickly suppressed to “undetectable” levels, meaning zero risk of passing the virus to sexual partners. For example, I have 100% confidence that I can’t pass on HIV to my husband, and he does too.
The targeted work focusing on at-risk groups – including gay men, as well as those of black African heritage and some in the trans community – is working. But the figures show that this must be continued and expanded. The figures on late diagnoses are particularly sobering: 51% of women, 55% of heterosexual men and 66% of those aged 65 and over were diagnosed at a late stage, which is after damage to the immune system has begun. This compares with just 29% among gay and bisexual men.
We need to test more people more often and in more places – regardless of gender, sexuality, ethnicity or anything else. Currently, hundreds of thousands of people are leaving sexual health clinics without testing for HIV. That needs to stop. On World Aids Day, the government announced £20m of new funding to bring in opt-out HIV testing in emergency departments in areas with the highest prevalence of HIV. At King’s College hospital in London, they’ve made 116 new diagnoses via opt-out HIV testing in the emergency department over the past five years. Those diagnosed this way were more likely to be women, heterosexual and of black ethnicity, compared with people diagnosed in the hospital’s sexual health department.
A key reason this approach is so effective is that many people at risk of HIV will never go to a sexual health service, which is why we need to offer testing in “non-traditional” settings. Plus, offering an HIV test to everyone normalises it and reduces the stigma: you’re not being singled out because of your sexuality or ethnicity. Free postal HIV tests should also be available across the country all year round – and not just for National HIV Testing Week, which began on Monday.
Alongside testing, the PrEP prevention pill must quickly be made available outside sexual health clinics, including pharmacies and GP surgeries, to benefit more people. To contextualise the size of the challenge, just 4% of those on NHS England’s PrEP trial didn’t identify as a gay or bisexual man.
We also need to ensure that all healthcare professionals have a solid baseline knowledge of HIV, which I know from personal experience is all too often not the case. For example, if someone is presenting with symptoms of a compromised immune system (such as thrush or cold sores), we need GPs to recommend an HIV test for a white heterosexual grandmother just as they might for a gay man.
HIV is a unique health challenge and remains one of the most stigmatised health conditions. I was in my mid-20s at the height of the Aids crisis and saw the darkest of days first-hand. I attended the funerals of friends in their 30s, and witnessed the vilification of my community in the media. Now the HIV epidemic in the UK is, overall, a good news story. We have highly effective ways of preventing, testing for and treating it. Someone diagnosed today should have a normal lifespan thanks to effective treatment, which will also prevent HIV being passed on.
But public perceptions haven’t shifted in line with medical progress. And this is a huge problem – not just because it affects the lives of those of us living with HIV who have to endure the stigma, but because it makes so many too scared to test. Put simply: we won’t end new HIV cases without also ending the stigma. And not ending new HIV cases when we have the tools available is completely unacceptable.
Ian Green is chief executive of the Terrence Higgins Trust