Lecanemab: What is it and how do I get it?

The new ‘miracle’ Alzheimer’s drug has been deemed too costly for the NHS, but there are other ways to get it. Here’s what you need to know

Lecanemab, the disease-modifying drug which can slow down the progression of Alzheimer’s disease, is set to be one of the most sought-after medications in the country after UK regulators greenlighted it earlier this week.
The Medicines and Healthcare products Regulatory Agency (MHRA) have approved the drug for people in the early stages of the disease. This decision follows the results of clinical trials which demonstrated that lecanemab could slow the rate of cognitive deterioration by 27 per cent over the course of 18 months, making it the first novel treatment for Alzheimer’s in more than 20 years.  
Jonathan Schott, a neurology professor at the Dementia Research Centre, University College London and the chief medical officer for Alzheimer’s Research UK, described the decision as a seminal moment, comparable to the first chemotherapy drugs which were developed for cancer. “It definitely marks a line in the sand and a new phase for Alzheimer’s therapeutics in this country,” he says. “We hope and expect that this will mark the beginning of a really flourishing phase in dementia research.”
However excitement has been tempered by a parallel decision from health assessment watchdog Nice not to offer lecanemab treatment on the NHS, citing the “significant cost” of the drug. Nice estimated that approximately 70,000 people in England would have been eligible to receive lecanemab.
This means that anyone with Alzheimer’s who wishes to try the drug will either have to pay for it privately or enrol for a clinical trial where they can receive it free of charge. Various trials are still ongoing for lecanemab along with other novel Alzheimer’s medications as researchers wish to assess the potential benefits over longer timeframes and in different patient populations.
So how does lecanemab work, who is eligible, and what will be the likely cost of going private?
Lecanemab is part of an emerging class of treatments which attempt to remove a protein called amyloid from the brain. Amyloid accumulates in the brain progressively throughout life, most notably after the age of 50. Once it is present in significant quantities it becomes toxic, driving brain inflammation and inducing the death of the brain’s nerve cells or neurons.
A monoclonal antibody which is administered intravenously into the bloodstream where it is capable of travelling to and accessing the brain, lecanemab targets and removes amyloid as it begins to form fibres in the brain.
“We’ve seen that lecanemab can bring amyloid levels down from the abnormal back into a more normal range within 18 months or sometimes sooner, which correlates with this slowing of progression of disease and symptoms,” says Dr Emer MacSweeney. Dr MacSweeney is a consultant neuroradiologist and the chief executive at Re:Cognition Health, a leading clinic for delivering clinical trials of Alzheimer’s and other causes of dementia in the UK and United States, who treated patients with lecanemab as part of a phase three trial which led to the drug’s regulatory approval.
Patients who have received the drug through trials have described their condition as stabilising after commencing treatment and seeing the amount of amyloid decrease in their brains. “When I first went on the trial, my memory was getting worse and worse,” says Larry Woelk, a 77-year-old retired business executive from east Hampshire who has been part of a trial since 2020. “But I feel that the progression of my symptoms has plateaued. My memory assessments have not changed since I started on lecanemab.”
Various clinics are now gearing up to offer the drug privately. Re:Cognition Health told The Telegraph that from October 2024 their centres across the UK will begin offering lecanemab, commercially marketed under the name Leqembi, on a private basis.
The company has centres in London, Birmingham, Bristol, Guildford, Plymouth, and Winchester as well as Fairfax, Houston, Chicago and Fort Worth in the United States.
“There are potential side effects and so it’s important that patients are monitored very carefully,” says Dr MacSweeney. “We’ve given over 2,000 intravenous infusions of this treatment to our patients as part of the trials, so we’ve got considerable experience.”
However, the cost of the treatment programme is likely to be considerable. According to Prof Schott, US clinics who have already begun offering lecanemab say that the cost of the drug alone is around $25,000 (£19,103) per year. However, the full treatment programme – which involves fortnightly infusions, multiple MRI brain scans within the first six to nine months to assess safety, and additional tests to clarify that the patient definitively has Alzheimer’s disease rather than another form of dementia – is believed to be even more expensive.
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“We’re talking somewhere between tens to hundreds of thousands of pounds,” says Prof Schott.
Another doctor with inside knowledge who wished to remain anonymous told The Telegraph that the annual cost of receiving lecanemab on a private basis, will be at least £50,000.
Re:Cognition Health say that they are yet to finalise their pricing structure, but the final cost will also depend on the patient’s weight as that determines the amount of drug they need to receive.
“The drug is going to come in 200mg and 500mg vials,” Dr MacSweeney explains. “If you’re 70kg, you’re going to need approximately 700mg. But it’ll also be a bit like with the Covid vaccines; if you’ve got five patients coming in one day, you can use the vials so that it’s more cost effective.”
Because lecanemab aims to maintain and slow down the loss of brain function, rather than regenerating the brain, the MHRA have approved it for people with mild Alzheimer’s disease as those patients are thought to be most likely to experience the benefit.
“We’re not talking about people who have profound cognitive difficulties and need a lot of help and assistance,” says Prof Schott. “These are people with concerns about memory or thinking, who have problems which impact their day to day living, but who are still able to do most things.”
Lecanemab also comes with a significant side effect called amyloid-related imaging abnormalities (ARIA) when the brain swells or bleeds which can occur as the amyloid is removed. “When amyloid builds up in the brain, it gets clumped on top of the brain’s nerve cells,” says Dr MacSweeney. “All of these nerve cells are supplied by tiny blood vessels and when the monoclonal antibody comes in to break that up and remove it, it can disturb that microenvironment and the integrity of the vessel walls. So you can effectively get some leakiness of fluid.”
In one trial approximately one in eight patients who received lecanemab suffered from ARIA, and Dr MacSweeney says that in her experience this typically happens within the first six to nine months which is why multiple MRI scans are needed during that period. In most cases, these symptoms are either mild or moderate and treatment can be paused and then resumed, once the brain has had a chance to heal.
However, because of this risk, patients who are also taking blood thinning medications are not allowed to receive lecanemab. The MHRA have also ruled that Alzheimer’s patients with two copies of the APOE4 gene, a genetic variant which is carried by around 3 per cent of the UK population, are not allowed to receive the treatment as studies have shown that they are at a heightened risk of experiencing side effects.
Because of this, anyone willing to pay to receive the drug privately will still need various tests to determine eligibility. These include a genetic test for APOE4 (via companies such as 23andMe – it is currently unknown whether private clinics offering lecanemab will provide such a test as part of their pre-assessments), an initial cognitive assessment at the private clinic to ensure that they are still in the early stages of the disease, and a screening for the presence of amyloid through either a PET brain scan or a lumbar puncture, to determine that they definitely have Alzheimer’s disease.
“There’s also a number of companies that are developing blood tests which will hopefully be on the market in the UK in the future, which will enable people to be able to detect whether or not they have abnormal levels of amyloid much more easily,” Dr MacSweeney explains.
However, if you can’t stump up the tens of thousands of pounds necessary to receive lecanemab on a private basis, there are alternative options.
Dr MacSweeney says she encourages anyone who thinks they or a family member may be eligible to register for a clinical trial where they may be able to get access to lecanemab or early access to other Alzheimer’s medications which are aiming to slow progression of the disease.
“There’s no cost to the patient and these are big international trials,” she says. “The people receiving lecanemab today found out about the trial in 2020 and enrolled on it back then. We’ve got about seven or eight different trials that we’re enrolling for at the minute.”
Prof Schott also points out that while Nice have declined to fund lecanemab for now, it is possible that the decision will be reversed as more data is accrued on the potential benefits. Meanwhile there are similar, even safer drugs in the pipeline with improved mechanisms of action which the NHS may decide to fund.
He highlights one particular drug called trontinemab which also aims to remove amyloid, but is able to hitch a lift into the brain via a natural ‘brain shuttle’ mechanism for transporting certain molecules across from the bloodstream. This means it can be used in far lower concentrations, making it potentially even safer and more applicable for a wider patient population.
“There was some data that was presented recently at the Alzheimer’s Association International Conference in Philadelphia that suggested it may have fewer side effects,” he says. “It’s very early stages, but it’s something exciting which we’re watching closely. So we’re gaining evidence all the time on these drugs and having the approval of lecanemab is a genuine breakthrough.”
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