Patients are being warned against buying a new “miracle” Alzheimer’s drug from private sources after reports emerged of two deaths in the US from suspected side effects in the past year.
The drug, lecanemab, has been shown to slow the progression of the degenerative brain disease by about six months.
Last week, the NHS spending watchdog rejected the infusion, saying its benefits were “too small to justify the cost”.
The National Institute for Health and Care Excellence (NICE) also added that it was concerned that patients needed to be monitored for “serious side effects”.
Last week, the NHS spending watchdog rejected the infusion drug, saying its benefits were “too small to justify the cost” (stock photo)
Experts say about 3,000 patients have started taking the drug since it was approved by U.S. health authorities in July 2023 (stock photo)
About one in 10 trial participants experienced brain swelling and one in six experienced small brain bleeds, rare but life-threatening conditions. Three patients died from suspected side effects in the 1,800-person trial.
But 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 the drug, but warn that doing so could put their health at risk.
Earlier this month, at the Alzheimer’s Association International Conference in Philadelphia, it was reported that two patients in the United States who had taken lecanemab had died from suspected side effects.
Experts say that around 3,000 patients have started taking the drug since it was approved by U.S. health authorities in July 2023.
The deaths were confirmed by Dr. Lawrence Honig, a neurologist at Columbia University in New York. The second death was reported by science news site Alzforum. Neither patient’s identity has been confirmed, but Dr. Honig said one of the patients carried a gene called APOE4, which studies have shown increases a patient’s risk of brain hemorrhage. About 15 percent of people with Alzheimer’s disease carry the gene.
Lecanemab, estimated to cost £20,000 a year, will be made available for private sale in the UK (stock photo)
Lecanemab and donanemab work by attacking a toxic protein in the brain called amyloid that is associated with dementia symptoms.
“People who can afford to buy the drug privately need to carefully consider the benefits and risks to decide whether taking lecanemab is worth it,” says Robert Howard, professor of geriatric psychiatry at the Institute of Mental Health, London.
“People think it will buy them time, but the data shows only modest benefits, while the risks are very real.”
There are one million people living with Alzheimer’s in the UK and there are currently no treatments on the NHS that can slow the progression of the disease. Lecanemab and a similar drug, donanemab, are the first treatments to be proven effective in clinical trials to combat the decline in brain function caused by Alzheimer’s.
The drugs, given by infusion every two weeks, work by attacking a toxic protein in the brain called amyloid, which is linked to dementia symptoms.
When the results of the two drugs’ trials were published last year, experts said the results marked the “beginning of the end” for Alzheimer’s. But since then, the treatment has been dogged by controversy. The Department of State first reported that a participant in the lecanemab trial, Genevieve Lane, 79, from Florida, died in 2022 after suffering a fatal seizure, just one week after receiving her third dose. A post-mortem concluded that lecanemab had likely caused a blood vessel in Genevieve’s brain to burst, leading to her death. Two other deaths in the trial were linked to side effects. Earlier this year, the paper also revealed that NHS bosses had expressed concerns that the introduction of the treatment could not only put the lives of Alzheimer’s patients at risk, but also cost taxpayers £1 billion a year.
Lecanemab, sold under the brand name Leqembi, is a monoclonal antibody drug used to treat Alzheimer’s disease.
Alzheimer’s affects one million people in the UK and the NHS currently has no treatment to slow the progression of the disease.
The NHS report found that the drugs were only effective if given very early in the disease, and suggested that monitoring patients for potential side effects could require significant resources.
These concerns were cited by NICE when it decided against introducing lecanemab on the NHS last week. Dr Samantha Roberts, director of NICE, said: “This is an intensive treatment that requires skilled staff to attend hospital every two weeks and monitor patients for signs of serious side effects, plus the cost of purchasing the medicine.”
“The second death reported in the media was confirmed as a rumour by the media outlet that first reported it,” a spokesman for Eisai, which makes lecanemab, said in a statement.
“Eisai is not in a position to respond to rumours. Eisai continues to fulfill its adverse event monitoring and reporting obligations in accordance with global regulatory requirements.”
