NHS Spending Watchdog to Review Evidence on Alzheimer’s Treatments
An independent appeal has ruled that NICE failed to fully account for the devastating impact on unpaid carers when it blocked access to two promising Alzheimer’s England’s drugs cost-effectiveness watchdog has been instructed to reconsider its decision to block two new Alzheimer’s treatments from NHS patients, following a successful appeal ruling that it had failed to properly account for the crippling burden placed on unpaid carers.
The National Institute for Health and Care Excellence (NICE) assessed both lecanemab and donanemab last year and concluded that the drugs were too expensive to justify on the NHS in England and Wales. However, an appeal panel found that NICE had not adequately factored in the wider societal costs of Alzheimer’s disease — in particular, the enormous toll it places on the families and carers of those living with the condition.
Both drugs will now return to a NICE committee for further assessment. While this does not guarantee a change in guidance, the ruling opens the door to a fresh evaluation that could ultimately result in NHS access for eligible patients.
“Informal dementia care costs the UK economy an estimated £20 billion a year — a figure that NICE must now confront.”
Neither lecanemab nor donanemab offers a cure for Alzheimer’s disease. Rather, they work by targeting and clearing amyloid protein clumps that accumulate in the brains of people with the condition, thereby slowing its progression. Both treatments are intended for people in the early stages of the disease.
Both drugs are currently available privately in the UK, meaning access is restricted to those who can afford to pay out of pocket. Campaigners argue this creates a deeply inequitable two-tier system, and that NHS approval is essential if the benefits of these medicines are to be realised across the population.
For those working in residential and nursing care settings, the implications of the appeal ruling are significant. Dementia is the leading reason for admission to care homes in the UK, and any treatment that slows the disease’s progression could delay the point at which individuals require full-time residential care.
The appeal centred in part on how NICE calculates the value of a treatment. At present, its methodology assesses the direct health impact on patients and a limited measure of the effect on carers’ health. Critics argue this approach dramatically undervalues new Alzheimer’s drugs, because it does not capture the full economic and social cost of the disease.
Caring for someone with dementia frequently leads to social isolation, loss of employment, severe emotional strain and significant financial hardship for families. Informal dementia care is estimated to cost the UK economy over £20 billion annually — a figure dwarfed only by the human cost to the millions of people affected.
Alzheimer’s Research UK is now calling on NICE to fundamentally reform how it appraises new dementia treatments, to ensure the broader costs borne by families, carers and wider society are reflected in cost-effectiveness calculations.
The charity has drawn a direct parallel with cancer care, arguing that dementia deserves the same level of political determination and investment that has transformed outcomes in oncology over the past two decades.
Baroness Louise Casey, who is leading a major independent review into adult social care, has added her voice to the calls for urgent action. She has proposed the appointment of a dedicated dementia tsar to drive progress on prevention, treatment and care, and has urged greater NHS investment in clinical trials for emerging dementia treatments.
With more than 130 Alzheimer’s drugs currently in clinical trials worldwide, campaigners stress that the NHS must begin preparing now — developing the diagnostic pathways and delivery infrastructure needed to administer new treatments when they become available.
Health and Social Care Secretary Wes Streeting has described dementia as “one of the greatest challenges of our time” and pledged that the UK should become a world leader in dementia clinical trials. However, sector leaders are clear that warm words must now be translated into concrete action and sustained investment.
Alzheimer’s Research UK is calling for a clear, UK-wide strategy covering investment, assessment reform and trial infrastructure — and is urging the government to prioritise dementia with the same urgency it has shown in other areas of health policy.
KEY POINTS FOR CARE HOME MANAGERS
• NICE has been ordered to reconsider its rejection of lecanemab and donanemab following a successful appeal.
• The appeal found that the social and economic burden on unpaid carers — estimated at over £20bn annually — was not adequately accounted for.
• Neither drug cures Alzheimer’s; they slow progression by targeting amyloid protein build-up in the brain.
• NHS approval, if granted, could delay the point at which patients require full-time residential care.
• A date for the next NICE committee hearing has not yet been confirmed; any outcome remains uncertain.
• Baroness Casey’s social care review has called for a dementia tsar, more trials funding and stronger government leadership.
