As advanced remedies emerge, the chief executive of Alzheimer’s Research UK warns sufferers could miss out as the health service struggles to cope
Groundbreaking new dementia drugs are likely to be the preserve of the rich while NHS patients will be subject to a “massive postcode lottery” when they become available for the first time in the UK, according to the co-chair of the government’s national mission to tackle the condition.
Amid multiple scientific and pharmaceutical breakthroughs – the latest of which, donanemab, is to have its full clinical trial results published at a conference in the Netherlands on Monday – more research funding and the establishment of a dedicated government task force, it should be a promising time for tackling the disease that affects more than 850,000 people in Britain.
But Hilary Evans, who is also chief executive of Alzheimer’s Research UK, has warned that even though a licensed treatment could become available in as little as 12 to 18 months, it will be available only to “small pockets of the UK”. And for it to be widely available even in five to 10 years’ time, huge systemic changes are needed.
Evans told the Observer that despite progress in recent months that saw Eisai and Biogen’s lecanemab, the first drug to slow cognitive decline in early-stage Alzheimer’s patients, getting approval from the US Food and Drug Administration, and promising signs from Lilly’s donanemab, the NHS faces a “challenge in terms of early equity of access”.
As it stands, if the drugs were made available today, NHS availability would be “patchy” and those who could afford to would be “vying to pay privately”, said Evans, who was appointed by ministers in March along with Nadeem Sarwar.
“Maybe some of the big university hospitals that have the research infrastructure, scanners and equipment would be in a good place to deliver it,” she said. “If you aren’t a patient who maybe lived in the vicinity of one of those hospitals, then you wouldn’t be receiving it. So there would be a massive postcode lottery and people vying to pay privately for these drugs.”
This, she said, is because most NHS patients do not have access to good diagnosis, memory clinics and brain scans. “We’ve got to get it right now – and we’ve got to invest in the infrastructure now,” she said.
Despite the crisis engulfing the NHS, a “full-scale new approach” to dementia in the system is needed.
“It’s what we need the system to deliver in five to 10 years, not what it’s probably going to deliver in, say, 12 to 18 months, when potentially you could have a licensed treatment available in small pockets of the UK,” she said.
“There might be an acceptance that that’s where we start, but we need to aim to have the resource in the NHS and the structures in place to be able to deliver treatments differently.”
Donanemab, like lecanemab, is a monoclonal antibody. It contains antibodies that bind to amyloid, a protein that builds up in the brain in the early stages of Alzheimer’s. Unlike treatments that are currently available, the drug is “disease-modifying” – aimed at tackling the underlying disease – and delivered by infusion.
As well as improving healthcare infrastructure, the lives of dementia patients could be improved by making the UK a more appealing place to conduct clinical trials so more people can get access to early-stage treatments, said Evans.
“The UK is not a great place to be doing clinical trials at all. Companies do not come here to do clinical trials, particularly in dementia, because they’re slow and really costly. We aren’t diagnosing people quickly and accurately enough.”
An NHS spokesperson said: “The NHS is a world leader at rolling out new treatments – in fact, there are five medicines available on the NHS for every four in Europe, and as with any treatment available on the NHS these are available to all eligible patients regardless of their location.
“NHS England is setting up a dedicated team to plan for the roll-out of a new class of drugs once we get a green light from the Medicines and Healthcare products Regulatory Agency (MHRA) and National Institute for Health and Care Excellence (Nice), which first have to assess the safety and the clinical and cost effectiveness of the treatment.”
After the donanemab announcement at the Alzheimer’s Association International Conference in Amsterdam on Monday, Evans will speak about Britain’s road-map for delivering treatment to patients. Health minister Will Quince had been due to attend with her but pulled out at the last minute.
Although Evans said there is leadership from the prime minister’s office, Rishi Sunak was not present for a recent presentation to No 10.
Going into the conference, she said she has never seen anything like it.
“I don’t think in the 10 years I’ve been going that there’s been as much excitement from the field of a conference,” said Evans. “There’s a lot of momentum in this space and the conversation is turning to how we deliver the treatments, making sure healthcare systems are all aligned and having those conversations on a global level.”
A Department of Health and Social Care spokesperson said: “We are working hard to find a cure for dementia, doubling research funding to £160m a year by 2024-25 and ensuring that clinical and cost-effective medicines reach patients in a safe, timely way.
“Nice is due to appraise donanemab for treating mild cognitive impairment or mild dementia caused by Alzheimer’s disease and the clinical and cost effectiveness of the treatment.”