The global consquences of the Trump adminsration's disengagement with HIV prevention could be lethal. In the UK we have the opportunity to write a different story. But there is no time to lose.
During the terrifying onslaught of announcements from the Trump administration over the last few weeks, it has been his foreign policy interventions, first on Gaza and then on Ukraine, which have topped the news agenda in the UK.
An area which has received less attention in the UK has been the White House’s disengagement from HIV/AIDS responses both domestically and overseas. Among the most alarming developments is a potential halt to the US President’s Emergency Plan for AIDS Relief (PEPFAR), a programme critical for supplying life-saving HIV medications to poorer countries.
This side of the pond, at least, there is a different narrative. Last week it was National HIV Testing Week 2025 in England, and Keir Starmer became the first UK Prime Minister and G7 leader to take an HIV test in public, following in the footsteps of Nicola Sturgeon who did so as First Minister of Scotland in 2017.
Such gestures can look like gimmicks. But the stark contrast with Trump’s administration demonstrates all too clearly why they are not. And the level of stigma about HIV which persists underlines why they matter.
The public health challenges we face across the UK are huge and can seem intractable. But ending new HIV transmission by 2030 — the clarion call of HIV organisations north and south of the border on World AIDS Day just three months ago — is absolutely within our grasp.
But the clock is ticking. And if we are to ensure aspiration is matched with action, we have no time to waste. In November 2024, the UK Health Security Agency (UKHSA) stated that it is unlikely that we will meet the 2025 targets, but the 2030 target of zero new HIV transmissions is within our reach.
Transmission can seem a clinical concept. Abstract too for those with no lived experience of it. And the level of misinformation which remains about HIV can make testing a frightening prospect and one best avoided.
So, before I return to testing, let me take you back 40 years to make transmission real.
Spring 1984. On a sunny Sunday morning in Clapham, Lawrence is lazing in bed with his boyfriend, Michael. After a late night, first at the Colherne in Earls Court, and then at Heaven, they are in no hurry to get up.
Lawrence is 26, Michael just a few years older. Lawrence is smitten, and as they embrace, he wants Michael to fuck him. Michael seems reluctant but Lawrence persists, and he relents. When it’s over, Michael pulls away. Nothing is said, but something has changed.
Autumn 1984. Lawrence develops large swollen glands in his neck and groin. At St Stephen’s Hospital in west London, he is diagnosed with persistent generalised lymphadenopathy (PGL).
PGL is a condition associated with the early stages of HTLV III, the retrovirus which scientists in the US had isolated earlier that year and believe to be the cause of AIDS. A positive blood test result follows. Lawrence has the virus.
All that happened long ago when even though thousands of gay men had already perished in the US, news travelled at a different pace. Knowledge of the virus was only just emerging. Testing was scarcely in its infancy.
Lawrence and I met a year later. He always believed that Sunday morning had been the moment of transmission. What little conversation he had with Michael about what had happened confirmed as much. Michael’s reluctance had been based on a hunch that AIDS was heading for him fast.
They had both known of Terry Higgins who had died two years earlier. They had heard about public meetings organised by concerned activists the previous year. They were aware of early exhortations by those same activists to practise safer sex. But they were living their lives too, as young men do.
A friend asked me a couple of years ago, how I had escaped the clutches of the virus. My answer was as truthful as it could be while sparing the detail. Quite a lot of judgement and an awful lot of luck.
Lawrence never blamed Michael, and they remained firm friends. Their mutual understanding about what had happened that Sunday morning was, to my knowledge, never spoken of. What was done was done. And could not be undone. ‘Ain’t that the truth,’ Michael would have said.
Michael died during the Christmas of 1991. Not our first funeral together, nor our last. And then there were the ones we were denied the opportunity to attend at all. Just three and half years later I sat beside Lawrence at our home in Stoke Newington as he breathed his last breath.
That was then. And this is now. A few short years after Michael and Lawrence died, combination therapy — the ‘miracle pills’ — arrived. They keep still more friends alive. Nearly three decades on from that breakthrough, achieved by a remarkable collaboration between scientists and activists, for some just one pill a day can do the trick.
More recently, we hailed the arrival of PrEP, a sweet pill to swallow. HIV is different now. Not the virus itself — it’s still the bastard it always was. It’s not that it couldn’t kill if left untreated. But we have the means to prevent it doing so. Lives are not just saved. They are lived. To the full. Long may that continue.
We have come so far. But we have so much more to do. The most recent UK-wide estimate is that around 113,500 people are living with HIV in the UK. Of these, around 5,200 are estimated to be undiagnosed and do not know they have the virus.
HIV statistics can be complicated to analyse, not least understanding the distinction between previously acquired diagnoses and new diagnoses. Among new diagnoses, there is also the difference between recently acquired and later stage HIV infection.
But what we do know is that from their peak in 2005 to 2021, new diagnoses were declining. Since then, they have been on the rise. Late diagnosis (when HIV has already started to damage the immune system with significant implications for treatment) remains a serious issue.
In 2023, across England, Scotland and Wales there were 6,512 HIV diagnoses (new and previously acquired). This included 6008 in England, 385 in Scotland and 119 in Wales. And new diagnoses (excluding those previously diagnosed abroad) were up by 15% in England, 10% in Scotland and 16% in Wales .
There are variations within and between countries too and within the statistics, some cause for cautious optimism. For example, in Scotland we know that recently acquired HIV infections continue to decline and the number of first ever diagnoses has nearly halved annually since 2017.
But the stark truth is that transmission — whether through sexual contact or sharing equipment for injecting drugs — is still happening. Concealed in the everydayness of people’s lives. And still some communities - people from ethinic minorties, for example - remain more at risk than others. Same as it ever was.
It is not that those people can’t live a normal life with HIV. Thousands do. But quite simply that there is no need for the number doing so to continue to rise. We know what needs to be done. We have the tools. Find the undiagnosed. Get PrEP to everyone who needs it. Keep people in treatment. End stigma. With political will, with investment — all utterly doable.
Which takes me back to testing and its central importance in that toolbox. Let me make that real too.
Winter 2025. As National HIV Testing Week 2025 gets underway, my conscience is pricked. I have let my own testing discipline slip and I’m overdue one. I was first tested shortly after I met Lawrence nearly 40 years ago and have lost count of the number of tests I’ve had since.
But hand on heart, I have never quite lost the fear I had back then. I guess that’s trauma for you. I trip over the resonances of the early days of the epidemic. And even though I know my level of risk is negligible my heart beats faster.
The anxiety that testing gives me meant that once I had remembered I was overdue, even though I had no reason to be concerned, I had to get it over and done with. With no NHS appointments immediately obtainable, I resorted to going private, something I’ve only done once before in four decades.
It turned out to be a fascinating wee excursion. I had the test in Superdrug of all places. It turns out they offer all sorts of tests. I made the appointment online and two hours later I was in a small consulting room hidden away at the back of a Superdrug store, being gently reassured by the nurse administering the test.
Not for the first time I was reminded there are such admirable people doing stuff in the most unusual settings who we never hear about. And hand on heart again, even though I hadn’t expected otherwise, I breathed a sigh of relief at the negative (non-reactive) test which followed.
I tell that story to illustrate that no matter what our experience of HIV and regardless of our level of knowledge, we’re not immune to fear - real and imagined. We wouldn’t be human if we weren’t. But also, to illustrate how vital testing is. Knowing our status remains the single best tool each of us can have to protect ourselves and others.
So above all, we must test our way to zero. That’s on us as individuals but we must weave testing into the fabric of our health systems too - relentlessly. This means investing in sexual health services to make it more accessible than ever before, promoting self-testing at home, and rolling out opt out testing in A&E (which is now happening in 90 English A&E departments but has only so far been piloted in Scotland).
What makes change happen is action. The opportunity to ‘fix’ a public health crisis in short order is a rare thing. If we fail, there will be no excuses. Enough of the talking now. Let’s get it done.
