England’s drugs costs watchdog is to look again at whether new treatments for Alzheimer’s disease should be made available on the NHS.
An appeal found that National Institute for Health and Care Excellence (NICE) had failed to properly account for the wider impact of the treatments, including the heavy burden on unpaid carers, when calculating the cost effectiveness of the medicines.
Both treatments, lecanemab and donanemab, will now return to a NICE committee for further consideration.
“Today’s ruling is an opportunity for NICE to consider the real cost of Alzheimer’s on people and their families, and we welcome the decision to look again at whether new medicines could be provided on the NHS,” says David Thomas, Head of Policy and Public Affairs at Alzheimer’s Research UK.
Lecanemab and donanemab do not cure Alzheimer’s but they slow it down by targeting and clearing clumps of amyloid proteins, which build up in the brains of people with the disease.
While the drugs are available privately in the UK for people who can afford them, NICE ruled last year that the drugs were too expensive to be made available on the NHS in England and Wales.
It is estimated informal dementia care costs the economy over £20bn a year.
Alzheimer’s Research UK wants NICE to update how it assesses the value of new dementia drugs and factor in the huge additional costs this devastating condition heaps on society and the wider economy.
Why dementia care costs matter for drugs access
NICE and its expert committees assess whether new drugs are good value for money for the NHS, based on a wide range evidence. It looks at how treatments perform in clinical trials, the experiences of patients and carers and the costs both of new drugs but also the changes to NHS services which might be needed to enable access to the treatment.
When NICE weighs up whether a new Alzheimer’s drug is cost effective for the NHS, it does a limited assessment of the impact dementia has on the health of carers.
But the condition takes an enormous toll on families and society because caring for someone with dementia can lead people to become more isolated and give up work. It can leave a massive emotional impact, as well as putting a strain on families financially.
Mr Thomas added: “Research has delivered new treatments with the potential to provide people with valuable extra months of independence, lessening the burden on carers. While these treatments offer modest benefits and can cause serious side effects, they provide the foundation for a future where dementia becomes a treatable condition.
“Now we need NICE to look again at how these medicines could benefit both people with early Alzheimer’s and their carers.”
Shirley holding her young son Chris
Chris, whose mum Shirley is living with Alzheimer’s disease, has experienced the toll of caring.
“The real cost of Alzheimer’s is far greater than many people realize. In order to give my mum the care she needed, I moved back home to help my dad as the care was too much for him alone. After my dad passed away from Covid in 2021, I became sole carer for my mum,” Chris said.
“It was a very difficult period – working a full-time job, caring for Mum and dealing with the loss of my dad. Eventually I got some in-home care support to help.
Chris and Shirley
“The family has borne most of the cost of Mum’s care, both in time and fees, and the family home has been sold to finance it.”
“The emotional and financial strain Alzheimer’s has taken on our family is horrendous, and I know many families across the UK are experiencing this pressure.”
He is backing Alzheimer’s Research UK’s calls for NICE to change how it evaluates new dementia treatments.
What next? We need real political action on dementia
The timeframe for the next NICE meetings to discuss the drugs is still to be set, and it is not certain follow-up hearings would change NICE’s guidance on access to the medicines.
But Alzheimer’s Research UK is continuing to push to make sure dementia is now a main priority for political and NHS decision makers.
The head of the ongoing major independent review into adult social care – Baroness Louise Casey – recently called on the government to act, show leadership and prioritise dementia.
She proposed appointing a dementia tsar to drive forward the prevention, treatment and care of dementia.
Baroness Casey also argued for more funding trials for treatments for dementia; with more than 130 Alzheimer’s drugs in clinical trials worldwide, it’s vital the NHS runs trials of new treatments now to understand how to deliver them to eligible patients in the future.
In addition to changing how NICE assesses new medicines, the health service needs to collect real-world evidence on new dementia drugs and prepare for diagnostic tests and innovative treatments that are coming.
“Alzheimer’s Research UK is calling on the government to give dementia the same political determination that transformed cancer care,” Mr Thomas said.
“We urgently need investment and a clear UK-wide plan so new treatments can be assessed in the NHS and reach the people who stand to benefit.”
The Health and Social Care Secretary Wes Streeting has said that dementia is “one of the greatest challenges of our time” and pledged that the UK should become a world leader in dementia clinical trials.
After decades of delays and downgrading dementia in politics, now we need to see Mr Streeting turn his commitments into action.
