“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.”
Who should take it and what tests will you need?
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.
Can I get on a clinical trial?
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.”