Patients have been warned against going private for a new ‘miracle’ Alzheimer’s drug after reports emerged that two people in the US have died of suspected side effects in the past year.
The drug, lecanemab, has been shown to slow the decline in the degenerative brain disease by around six months.
Last week, the infusion drug was rejected by the NHS spending watchdog, as the benefits were ‘too small to justify the cost’.
The National Institute for Health and Social Care Excellence (NICE) also added there were concerns that patients would need to be monitored for ‘serious side effects’.
Last week, the infusion drug was rejected by the NHS spending watchdog, as the benefits were ‘too small to justify the cost’ (stock photo)
Experts say that around 3,000 patients have started taking the drug since it was approved by US health officials in July 2023 (stock photo)
Around one in ten trial participants experienced swelling in the brain and one in six had small brain bleeds, which in rare cases led to life-threatening symptoms. Three patients died in the 1,800 participant trial of suspected side effects.
However, lecanemab, which costs an estimated £20,000 a year, will now be available privately in the UK. Experts predict thousands of desperate patients will turn to private providers for lecanemab, but warn that they could be putting their health at risk.
Earlier this month, it was reported at the Alzheimer’s Association International Conference, in Philadelphia, that two patients had died of suspected side effects after taking lecanemab in the US.
Experts say that around 3,000 patients have started taking the drug since it was approved by US health officials in July 2023.
One death was confirmed by Dr Lawrence Honig, a neurologist at Columbia University, New York. A second death was reported by the science news website Alzforum. Neither patient has been identified but, according to Dr Honig, one carried a gene – called APOE4 – which research shows puts patients at greater risk of brain bleeds. Around 15 per cent of Alzheimer’s patients carry this gene.
Lecanemab, which costs an estimated £20,000 a year, will now be available privately in the UK (stock photo)
Lecanemab and donanemab work by attacking a toxic protein in the brain called amyloid which is linked to dementia symptoms
‘Anybody who has the money to afford to get this drug privately needs to carefully consider the benefits and risks and decide whether it’s worth taking lecanemab,’ says Robert Howard, professor of old age psychiatry at University College London’s Institute of Mental Health.
‘People think it will buy them more time, but the data shows only a marginal benefit. Meanwhile, the risks are very real.’
There are one million Alzheimer’s sufferers in the UK and there are currently no NHS treatments capable of slowing the disease. Lecanemab – and a similar drug called donanemab – are the first treatments to be shown in trials to combat the loss of brain function triggered by Alzheimer’s.
The drugs are given every fortnight as an infusion. Lecanemab and donanemab work by attacking a toxic protein in the brain called amyloid which is linked to dementia symptoms.
Last year, when trial results for both drugs were announced, experts said the findings marked the ‘beginning of the end’ for Alzheimer’s. However, since then, the treatments have been dogged by controversy. The MoS was first to report the death of lecanemab trial participant Genevieve Lane, 79, from Florida, who had a fatal seizure in 2022, just a week after her third dose. An autopsy concluded that lecanemab was likely to have triggered the burst blood vessel in Genevieve’s brain that led to her death. Two other deaths in the trial were linked to side effects. Earlier this year, this newspaper also revealed that senior NHS figures had raised concerns that rolling out the treatments could cost the taxpayer £1billion a year as well as endangering the lives of Alzheimer’s patients.
Lecanemab, sold under the brand name Leqembi, is a monoclonal antibody medication used for the treatment of Alzheimer’s diseas
There are one million Alzheimer’s sufferers in the UK and there are currently no NHS treatments capable of slowing the disease
According to an NHS report, the drugs were effective only when given in the very earliest stage of the disease. It also suggested that monitoring patients for potential side effects could take up a significant amount of resources.
Last week, when NICE ruled against rolling out lecanemab on the NHS, it referenced these concerns. Dr Samantha Roberts, head of NICE, said: ‘It is an intensive treatment to give to patients involving a hospital visit every two weeks with skilled staff needed to monitor them for signs of serious side effects, plus the cost of purchasing the drug.’
A spokesman for Eisai, the firm that manufactures lecanemab, said: ‘The second death described in the media was acknowledged as rumour by the news outlet that first reported it.
‘Eisai is not in a position to respond to rumours. Eisai continues to meet our adverse event monitoring and reporting obligations consistent with the global regulatory requirements.’
