‘After 40 years of HIV testing, we are on the verge of something extraordinary’

The first HIV test became possible just over 40 years ago. At that time there was no treatment for HIV, cases were rising rapidly and the fear around the condition was overwhelming. As we mark National HIV Testing Week 2026, the picture could not be more different. That change is a tribute to the action and activism of the LGBT+ community and other communities more affected by HIV.

I first tested for HIV a few years after the test became available. I remember frankly being terrified. Many of my friends chose not to test at all, preferring to not know rather than have to face a positive result. Back then, before even getting a test you had to have a full counselling session, to prepare you for the result if you tested positive – news that wouldn’t be just life-altering but quite probably life-ending.

And once you tested, it was a two-week wait for a result. Two weeks where you could think of nothing else, of going over every sexual encounter you’d ever had in your mind again and again thinking about what your result was going to be.

After that first test, it was years before I plucked up the courage again.

I was diagnosed with HIV in 2003. By then things had already changed massively: there was now highly effective treatment, but testing was still slow and could be tricky to access.

Finding out I was living with HIV motivated me to get involved in the work of Terrence Higgins Trust in Brighton. I worked on HIV testing, because I knew then something that remains true now: the more people you can test, and the earlier you can get people to test, the better their outcomes.

“Right now, gay and bisexual men are doing something extraordinary: we’re testing for HIV at record levels”

Tests which gave a result in minutes rather than weeks were just becoming available, but you could only have one by going to a clinic. We knew we needed to go to people where they were.

Terrence Higgins Trust in Brighton started one of the first services going into gay saunas and offering HIV tests there and then. There were initial concerns from healthcare professionals, funders, venue owners and customers if this approach could work. We showed that not only it could be done safely but people were keen to test.

Similar programmes sprung up across the country – and if you could test in a sauna, why not at a bar, a Pride event, a church, a community centre? 

In 2015, self-test kits for HIV became available in the UK and, through, National HIV Testing Week you could order a free HIV test to your home, something which Terrence Higgins Trust helped pioneer. In the decade since, the picture has changed rapidly, with the availability of PrEP free on the NHS and the knowledge that people living with HIV on treatment cannot pass it on.

And right now, gay and bisexual men are doing something extraordinary: we’re testing for HIV at record levels. It’s not just a small bump: year after year, the numbers keep climbing. It correlates with increasing numbers also accessing the prevention pill PrEP. 

“In recent years, we have seen case numbers rise amongst heterosexuals”

In 2015, there was an estimated 26,000 people living with HIV in the UK who did not know it. That’s decreased to just 5,200. But even with record testing levels, too many of us are still diagnosed late each year. The data suggests that about 30% of us are finding out we have HIV much later than is ideal. A delay in testing and knowing your status can make looking after your health harder and lead to worse outcomes.

We’ve come a long way, but we still have further to go – and we also need to make sure than HIV is ended for everyone. In recent years, we have seen case numbers rise amongst heterosexuals, and even amongst gay and bi men progress is uneven, with the risk that progress entrenches existing health inequalities within our community. 

If you’re already testing annually or every few months if you have multiple partners, that’s great. Encourage others to get tested too.  

If you’re testing less regularly or you have never tested, National HIV Testing Week is an invitation to.  You can order a free test right now from freetesting.hiv to be delivered to an address of your choice.

Four decades after those first HIV tests, we are on the verge of being able to end this epidemic forever in this country. We’re on a mission to end new cases of HIV by 2030, but we won’t get there without stepping up our efforts. Our community has worked so hard to get to this point – together I know we can make it happen. 

Marc Tweed is Head of Terrence Higgins Trust South.