Is it worth spending £50k on the new Alzheimer’s breakthrough drug?

With private clinics expected to charge tens of thousands, we assess whether it’s worth forking out for the latest Alzheimer’s treatment

The approval of the breakthrough Alzheimer’s treatment lecanemab was described as a bittersweet moment for patients and their families. The good news: it was the first ever dementia drug given the green light by the UK’s medicines regulator, the MHRA, that could actually slow the disease in its early stage. The bad news: for now at least, it would not be made available on the NHS. The benefits were simply too small to justify the costs, said the National Institute of Health and Care Excellence (Nice) in draft guidance. 
While their decision is provisional, it means that for the foreseeable future the only way to obtain lecanemab in England and Wales will be via private prescription. And the cost of doing so will undoubtedly be steep: insiders estimate private clinics are likely to charge up to £50,000 per year, though prices are still being finalised. 
For many families, such a price tag is prohibitive. Even for those with the means, there remains a tough decision to be made: should you potentially spend your life savings on a treatment whose effects have been described as modest? Here, we consider the questions Alzheimer’s patients and their families are asking now.
In a clinical trial of 1,800 patients over an 18-month period, the drug was shown to slow cognitive decline by 27 per cent and reduced the loss of quality of life by up to 56 per cent. Administered intravenously, lecanemab works to clear the build-up of amyloid protein found in the brains of Alzheimer’s patients. This build-up is thought to be toxic to brain cells, leading to the symptoms of the disease.
But while the drug appears to slow its progression in those at an early stage, it does not actually improve symptoms, says Prof Paresh Malhotra, the head of the Division of Neurology at Imperial College London. “It seems to make people have less of a decline over an 18-month period,” he says. 
Put another way, the drug can buy patients the equivalent of four months where they are not declining as sharply as they would without it. “It’s a case of trying to explain that very clearly to patients and their families – that it doesn’t lead to an improvement, it leads to a slowing of decline, and that 27 per cent in this context is not a huge effect,” says Prof Malhotra. “You’re still declining [even while taking the drug].”
At the end of the 18 months, you would continue declining at the same rate as before, but starting from a slightly better point. “But they’re quite small differences,” Prof Malhotra stresses. “The words my colleagues and I use are ‘small to modest’ to describe the size of the effect.”
Several of his colleagues say the effect over an 18-month period is almost too small to notice. “It’s not quite like taking an antibiotic for pneumonia or a curative treatment for cancer,” he adds. “Saying it’s useless is not true, but saying it’s a wonder drug isn’t true either.”
Receiving lecanemab is not as easy as popping a pill. It involves a fortnightly intravenous infusion at a clinic and regular MRI scans to monitor possible side effects. These can include brain swelling or bleeding, though mostly this is said to be mild or moderate and treatment can be paused and then re-started. 
Not everyone with mild Alzheimer’s will be eligible. Those who have a significant degree of vascular damage – for instance if they have already suffered significant strokes or multiple small bleeds on the brain (micro-haemorrhaging) – would not be able to receive lecanemab. Patients with two copies of the APOE4 gene (a combination that gives someone a relatively high risk of Alzheimer’s) will also be excluded.  
Prof Malhotra has been discussing lecanemab frankly with his patients for the past 18 months. “Some have remained keen and some have been put off by hearing about the twice-monthly infusions or the potential side effects,” he says. “Then there’s the very significant cost as well.”
“Without even bringing cost into it, first it depends on an individual’s understanding about the risks versus the benefits,” says Prof Malhotra. “The benefits are modest but do appear to affect the speed of decline. The risk is about 20 to 25 per cent of people having some bleeding or swelling on the brain, and there’s also the quite intensive nature of the treatment.”
It’s important each patient appreciates what the treatment involves and what it will and won’t do, he says. “It’s not quite the same situation as antibiotics when someone’s got sepsis, where obviously I’d tell a relative ‘you should have it straight away, this is going to save your life.’”
Even if lecanemab was available on the NHS, Prof Malhotra says he would still advise a patient to think it through carefully before starting the treatment. “If someone is considering it, the most important thing is they get all the information needed to make a decision. Then it becomes a personal choice.”
Dr Emer MacSweeney, a principal investigator for clinical trials and a consultant neuroradiologist, sees the development of lecanemab as a significant and much-needed breakthrough for Alzheimer’s treatment. She believes it is paving the way for a new class of similar medications, but acknowledges the cost of the drug is a major barrier for most patients and advises those unable to afford it to sign up for trials instead. “These provide a very safe, secure environment in which to access new generation medications and there are lots of even newer generation medications coming down the pipeline,” she says.
Re:Cognition Health, a leading clinic for delivering trials of Alzheimer’s treatments, where Dr MacSweeney is chief executive and medical director, is enrolling patients for eight or nine trials currently, as well as offering lecanemab as a private treatment. It is hoped the drugs being tested now will offer greater benefits than those already coming onto the market.
For most patients, spending huge sums on lecanemab may not be the best way forward, Dr MacSweeney suggests, pointing out that drugs can be obtained for free on trials. Even those taking a placebo in her clinic’s trials will receive the drug itself eventually.
Clinics offering the treatment would need to have a standard procedure in place. This would include a DNA test for the APOE gene, which can be related to patients’ risks of side effects, as well as checks for micro-haemorrhaging and an assessment to ascertain the stage of the disease, says Prof Malhotra. A PET scan of the brain or lumbar puncture (testing spinal fluid) would be needed to show whether or not the patient has the amyloid protein build-up, plus a clinical assessment including cognitive and memory tests to determine the severity of the condition.
There is a limit to how many PET scans (a technique that produces three-dimensional images using a radioactive marker) can be done either within the NHS or privately, explains Prof Malhotra. But it’s not yet known how much demand there will be for lecanemab among private patients. “Currently I’m sure the system would be tested if lots of people came forward for it,” he says. This could change as Alzheimer’s drugs become more effective and the system evolves alongside the scientific advances.
Experts hope that in a few years’ time, we could be in a much better place when it comes to Alzheimer’s medications. Prof Malhotra believes it’s likely that in future doctors will be treating the disease at different points in its progression. “Hopefully some sort of combination therapy will help us deal with it more effectively as time goes on,” he says. 
Finding a way to stop, rather than merely slow, patients’ decline would be the next step, ideally. Ongoing trials are assessing whether drugs like lecanemab might be helpful before signs of Alzheimer’s even appear to prevent the disease from starting.
“There’s a lot to be done,” says Prof Malhotra. “But it’s going in the right direction.” Dr MacSweeney agrees Alzheimer’s research is at a promising point. “There are going to be so many more medications that will follow [lecanemab],” she says. 
Within the next few years, there will “100 per cent” be a whole variety of treatments available, which are currently being trialled, she adds. “We’re just seeing the tip of the iceberg.”
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