‘Lenacapavir is available – how many people have to die before the NHS says yes?’

I had déjà-vu dreams again last night. As we plan next week’s ‘Queue to Nowhere’ demonstration at NHS England demanding full access to the HIV treatment lenacapavir, my mind wanders back to 2016.

Under a bright blue sky I stood in a fabulous human conga line wrapping round 56 Dean Street Sexual Health and Wellbeing Clinic, or held big blue balloons outside NHS offices demanding full access to Pre-Exposure Prophylaxis (PrEP) — a scientifically proven method of preventing HIV transmission that the government stalled on releasing. We were choreographing a future where no one should have to live, or die, alone without access to HIV treatment that enables a life full of love and dignity.

When I get tired thinking about what props to pack, which slogans to paint on placards or how best to craft a press release, I pinch myself.

Lenacapavir is a drug that can be used for prevention as PrEP, but right now we are fighting to have access to it, as an injection, twice a year for treatment. For some it will be life saving, as we have reports of people who have been given six or fewer months to live. Lenacapavir could change that. The drug company who makes it reports having negotiated on price, the drug is available in Scotland and we now need NHS England to agree to pay for it. For the people most at risk we can’t wait a month, or two, or more, they need lenacapavir right now.

I’ve only been active since 2014, when we re-fired the engines of ACT UP London. And now here we are: 2026, 30 years since safe antiretrovirals (ARVs) finally hit the scene. ARVs people were desperate for. People who carry whole constellations of dead friends inside their ribs. People who once scheduled funerals like gym sessions. They built scientific hive-minds to make sure ARVs were actually safe — not another AZT-shaped Kafka nightmare, not another “nearly freedom” mirage at the end of a brutal tunnel.

I think about my ‘Demand Lenacapavir Now’ affinity group and honestly, the cast list slaps. Garry Brough, living with HIV for 34 years and programme manager at Fast-Track Cities, committed to zero new infections, preventable deaths and stigma by 2030. Mel Rattue, founder of Positively Mindful, living with HIV for 25 years, who supports women to ‘Strutt to Stop Stigma’ and declare their status with pride through Catwalks for Power, Resistance and Hope. Or Dr Tristan Barber, living with HIV for over 20 years and current chair of the British HIV Association, who has spent decades remixing clinical excellence with fierce, patient-centred, whole-person care.

Icons, the lot of them.

Then there are my younger friends, swapping sexy, chaotic, glorious hookup stories from sex parties, intimate lovers and one-night stands. They use PrEP and don’t think twice about how it arrived in their medicine cabinet. Some don’t know about the demos, the pharmaceutical arm-wrestling, the ministers doing interpretive dance around responsibility — and I refuse to be that queen saying, “Count your lucky stars…” Let them enjoy.

Because for me, the journey to freedom matters as much as the destination. If we don’t dig to the root, not just the symptom, hegemonic corporate and pharmaceutical power keeps hogging the spotlight. At ACT UP London we fight for an end to AIDS with big ears, big hearts, deep love, revolutionary joy and compassion.

There are no words for the respect I have for people who give their free time to work for the humanity of others and for people living with HIV like myself — but twist my arm, here are a few. Since the 1980s, ACT UP has been a strategic goldmine in the quest for healthcare for all. As we approach its 40th anniversary in 2027, action highlights include pioneering political funerals, unveiling giant condoms over homophobic politicians’ houses, dumping manure outside Nigel Farage’s office after he said HIV-positive immigrants shouldn’t enter the UK, then hosting anti-stigma classes in his local pub, theatre shows like HIV Blind Date and mass die-ins from Trafalgar Square to Wall Street. These actions convey who is responsible for the deaths of over 40 million people since the pandemic began.

This week is National HIV Testing Week. Get tested, spread U=U (Undetectable = Untransmittable) and fight back.

Because today’s political runway is lethal. Keir Starmer slashed the UK international aid budget by 40%. Trump axed USAID and PEPFAR. The forecast? Up to 23 million deaths by 2030. Surely that’s not policy — that’s a body count.

So where do we begin with our overwhelm? Meetings and demonstrations. 

However new or old you are to activism, you are welcome — and needed. Because we know from the history of HIV that change and progress doesn’t just happen. All too often it’s only when it is demanded for. When people come together and say ‘our lives count’ – every single one.

Bring your rage. Bring your love. Queue To Nowhere: Demand Lenacapavir Now is on 18 February 2026, from 4:30pm–6pm, outside NHS England London, Wellington House, 133–135 Waterloo Road, SE1 8UG.

For more information, visit @danglassmincer, @actup_london and www.actuplondon.wordpress.com.