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At 4.30pm on Wednesday 18th February, NHS workers and activists from the National AIDS Trust, HIV i-Base, British HIV Association (BHIVA), Aids Coalition to Unleash Power (ACT UP), UK-CAB – HIV treatment advocates network and other healthcare organisations have called for a demonstration outside NHS England HQ in Waterloo demanding access to lenacapavir to be secured urgently for those who need it.
The demonstration is called ‘QUEUE TO NOWHERE: DEMAND LENACAPAVIR NOW’ because as National AIDS Trust state ‘Without access to unique life-saving treatment, a small number of people living with HIV may die unnecessarily’.
Simon Collins, Advocate (i-base.info) said:
“It is obscene that someone with advanced HIV could die because the NHS has been unable to agree a price for lenacapavir but, in the same hospital, dozens of people in a PrEP study will be getting the same drug free to help them stay HIV negative. Financially it will quickly cost the NHS far more to provide in-patient care for someone with advanced HIV than offer them outpatient treatment, even if it’s with an expensive new drug.”
Mel Rattue, Positively Mindful said:
“We are protesting outside NHS England to Save Lives and demand the Release of Lenacapavir Now. NHS England must commission lenacapavir — a life-saving injectable HIV drug — which people urgently need right now, and which is already available in Scotland. People are out of options. People are running out of time. People may die while NHS England stalls, so we’re taking action.”
Dr Tristan Barber, Chair of British HIV Association (BHIVA) said:
“Lenacapavir will save lives. Without it, people — including young people some of whom acquired HIV at birth— face worsening illness, hospitalisation, and death. Lenacapavir was approved in England in August 2022 and more than three years later NHS England have not made this available. Although about 30 people are receiving lenacapavir free as a donation from the manufacturer, this access programme was closed to further enrolment in April 2025. We say every life counts. If Scotland can provide lenacapavir, why can’t England and the rest of the UK?”
Testimonials
Lucy* was born with HIV 30 years ago. Back then, there were no effective treatments for babies with HIV and even when she started treatment as a young child, the drugs were all foul tasting liquids, toxic and caused side effects. Lucy lost her mum to HIV when she was just five years old and grew up as a looked after child and has always struggled to take tablets as they made her feel sick, vomit and were a constant reminder of her HIV. By the time she turned 18, she was already resistant to many of the available HIV treatments and her immune system was already extremely low and she struggled with depression and low self-esteem and HIV stigma.
Throughout her 20s she had many long admissions to hospital with life threatening infections, some needing intensive care because of her lack of immune system and has now been left disabled. She continued to try oral tablets and even agreed to have a tube inserted in her stomach to help her take her tablets. However, despite this she is now resistant to all currently available oral treatment combinations. Lenacapavir is a completely new class of drug and given by injection and would be (together with another available long acting medication) her only option for effective treatment. She is now back in hospital and without this drug, she is likely to die in the next six months.”
*Not real names or individuals. These are a combination of very similar stories of people with HIV who desperately needed or were able to access lenacapavir and have been anonymised to protect confidentiality.
Protest Demands
1. Immediate commissioning of lenacapavir for those with no other treatment options.
2. Full accessibility, matching NHS Scotland.
3. NHS England must agree to reimburse a fair price for lenacapavir and get the treatment out there
4. No more delays while lives are on the line.
Location: NHS England London, Wellington House, 133-135 Waterloo Road, London, SE1 8UG
Date / Time: Feb 18th – 4.30 – 6pm
Contact:
Dan glass – [email protected] / 07717811747