First drugs to slow down dementia could be denied to NHS patients

THE first drugs to slow dementia could be denied to NHS patients because of rationing, campaigners and health experts have warned.

Breakthroughs in Alzheimer’s research have sparked hopes of “the beginning of the end” of the disease, but the UK’s leading dementia charity fears the new drugs will be blocked by NHS rationing bodies.

Alzheimer’s UK has warned that the approval process for new drugs does not assess the full benefits such medication could bring and is “not fit” for purpose.

Last month, watchdogs began assessing the safety of lecanemab, the first ever drug shown to slow cognitive decline. Trials of a second medicine, donanemab, last month suggest it could be even more powerful, slowing disease by a third. The results are the first positive breakthroughs in treatment for more than two decades – and the first drugs in history which appear to slow the progress of the disease, rather than just mask symptoms.

Alzheimer’s UK raised concerns that the new generation of drugs could be rejected by the National Institute of Health and Care Excellence (Nice) because it will not take into account the wider costs of the condition to society, such as the help from family carers.

Nice’s assessments are largely based on direct costs to the NHS, with some account taken of costs to social care, and quality of life for carers. Such frameworks do not take account of the vast sums lost to the economy when carers give up their jobs or reduce their hours to look after the elderly. Charities had already expressed fears that the NHS does not have the infrastructure to roll out the drugs, which require regular infusions, and multiple scans.

More than 850,000 people in the UK have dementia – including one in six of those over the age of 80. David Thomas, Head of Policy at Alzheimer’s Research

UK, urged Nice and the NHS to change its methods, saying there was “no time to waste” given that lecanemab could be approved by the end of this year.

He said: “Over the next five to ten years, we expect several new, innovative Alzheimer’s drugs to come to market. These drugs tackle the disease in a way we have not seen previously, and as such there is no precedent for how they should be evaluated by bodies like Nice.

“We believe the current Nice approval process is not fit to assess the full benefit of Alzheimer’s drugs to people and society. We’re concerned this will be a barrier to eligible patients having routine access to these drugs should they be licensed in the UK.”

The charity pointed out that Alzheimer’s disease places a far heavier burden on families than other conditions, with 1.1 billion hours spend on unpaid informal care annually, compared with 342 million for cancer.

Former Cabinet minister Baroness Morgan today raises the same concerns, saying the current frameworks used to decide whether or not to fund drugs on the NHS could see thousands denied help. Writing for The Sunday Telegraph, the Tory peer, a former Education and Culture Secretary, told how her own father’s diagnosis with Alzheimer’s disease had opened her eyes to the “heartbreak” of the disease – and the burden placed on carers. “The £10.2billion a year cost to the UK economy from informal care – more than any other leading cause of death – is simply overlooked, “she writes, urging Nice to change its formulas to take account of the huge burden being placed on families.

Two weeks ago Eisai, the makers of lecanemab, submitted an application to the Medicines and Healthcare products Regulatory Agency as a treatment for early Alzheimer’s disease. The drug has been authorised in the US at a cost of $26,500 (£21,177).

The NHS is likely to enter price negotiations if it is approved in Britain, but full treatment costs will include the administration of fortnightly infusions and regular brain scans.

A spokesman for Nice said the body was in the early stages of its appraisal of lecanemab, and that it would be “premature” to suggest the drug would not be considered good value for money.

He said: “Nice’s key role is in supporting access to effective medicines and securing value for NHS resources. This is why we focus first and foremost on health and costs to the NHS and personal social services, but also recognise wider impacts and costs. ”

He added: “Nice can also consider the impact on carers by including the medicine’s impact on their quality of life in the evaluation.”

Medication could be rejected because approval process ‘does not assess the full benefits’

‘The Nice process is not fit to assess the full benefit of Alzheimer’s drugs to people and society’