Why are new dementia drugs not going to be rolled out on the NHS?

In his latest blog, Ben Williams shares his thoughts on the recent news that the first drug shown to slow Alzheimer’s is considered too costly for the NHS.

The recent announcement from NICE regarding the ‘Benefits of new Alzheimer’s treatment Lecanemab are too small to justify the cost to the NHS’ is a significant development that evokes mixed feelings. 

For over 15 years, I’ve been working in various roles to support people living with dementia to get better treatment. Recently, Care City with the London Dementia Clinic Network published a report, adding to the already significant body of evidence that once people get a diagnosis of dementia in the UK, they have little further support from the health service. Care services are overwhelmed and unable to provide the needed support. Where available, community groups seem to be providing solace to people. So why is the quality of support lacking?

When the pandemic hit, Care City consulted with clinicians in North East London to discover and overcome the barriers of remote consultation. In our 2021 report, we were saddened to hear comments from a minority of clinicians saying they saw little point in trying to achieve a diagnosis in the first place. As there was no cure and because the therapeutic options available to patients they felt were weak, they did not feel such a drive to reach a diagnosis. 

Later in our 2023 report, we found that systemic processes and technical problems prevented healthcare staff from supporting people as they wanted. Although NICE had provided the cost-benefit analysis, few GP practices were offering annual health checks for people living with dementia, so people would go years without having their medications reviewed. We even found patients who had a diagnosis of dementia on their patient records that they and their families were unaware of. 

So regardless of the efficacy of Lecanemab, simply having a drug available for dementia within the health service would be a start towards a culture change within NHS towards dementia. 

We consulted clinicians in North East London again in 2024 to assess the expectations and impact of this new drug and others in the pipeline. It would have a complete change of practice for a health offer for dementia. Currently, there are not enough health staff to cope with the demand and many clinics operate a waiting list system for people who have suspected dementia. Most of those staff are used to asking for blood tests or MRIs from other teams, but if Lecanemab went ahead, they would need to perform lumbar punctures themselves. So there would be a need for extensive training. A suitable space would be needed to find a place for a patient who may be agitated to sit for an hour every few weeks while administering the drug. Due to the concern of side effects of swelling in the brain, an MRI would be needed every few weeks, something that currently has waiting lists in North East London for several months. At every stage, we can see that the NHS was not ready to handle the cost of this drug and the costs of administering it.

Most clinicians we spoke to didn’t think NICE would approve Lecanemab. They felt the amount of change required for what was not a cure did not make sense. Also, if NICE did recommend it, then the NHS would have to provide it in 90 days, which seems unreachable considering the current state of things. Clinicians wanted to see increased funding for existing services. That makes sense, but Lecanemab is not the only drug. 

Wouldn’t it be even better if we could create a ‘virtual ward’ for people receiving treatments for Alzheimer’s disease in their own homes? Maybe we could invest in lower-cost portable MRI machines to look for the possible side effects of brain swellings. 

Also, these drugs are currently designed to offer treatment for those living with Alzheimer’s Disease, which is one type of dementia. How do we support people with the emotional impact of giving a diagnosis of dementia, knowing there is a treatment, but knowing that you don’t qualify?

Yeah, I have mixed feelings. I am glad we are not wasting money, but soon, we will have to spend it to prepare for treatment. And we will have to find effective ways to make that work and properly support people and their families who don’t qualify.