Our healthcare system isn’t yet ready for future dementia drugs?

Later this year, the first-ever drugs which appear to slow down the progression of early Alzheimer’s disease could be approved for use in the UK – but our healthcare system isn’t yet ready for them.?

With over 100 Alzheimer’s disease drugs currently in clinical trials, we’re at a defining moment for the condition. But we also have to be realistic about the challenges we face.?

Right now, a third of people living with dementia in the UK don’t have a diagnosis – and we’re far off having the workforce and diagnostic equipment needed to identify all those people who could be eligible for new treatments if approved.?

This needs to change – and a new Government presents opportunities to make the case for improved preparation by health systems to deliver Alzheimer’s treatments of the future.

System readiness??

Our call at Alzheimer’s Society is clear: we want the NHS in England and Wales, and the HSC system in Northern Ireland, to publish plans on how they’ll deliver new treatments if approved.??

These plans must include investment in the workforce and equipment needed to diagnose more people and confirm whether they’re eligible for new treatments.?

Treatments like lecanemab and donanemab are only effective in the early stages of Alzheimer’s. Yet, on average, people live with dementia for 3.5 years before getting diagnosed.?That’s why it’s crucial that our new Government prioritises early, accurate dementia diagnosis, inclusive of information on what type of dementia people have. ?

One of the major barriers we currently face in delivering new treatments is that just 2.2% of patients at memory services in England and Wales receive specialist diagnostic tests like a PET scan or cerebrospinal fluid (CSF) test.??

Concerningly, one in five memory services don’t have access to PET scans, and more than half of memory services don’t have access to CSF testing. The UK also has the lowest number of PET scanners per million population among comparator countries.?

For health systems to be properly ready for new treatments, it’s clear that rapid and fundamental change to diagnostic infrastructure is needed. We also need a bolstered workforce, with more people who are able to perform scans and tests and interpret results.?

Disease-modifying treatments: the latest??

Over the last year, we’ve heard a lot about the disease-modifying treatments lecanemab and donanemab, both of which appear able to slow the progression of early Alzheimer’s disease.??

Both treatments target amyloid, which builds up in the brain and forms plaques that damage brain cells, causing them to die.??

As the first treatments to tackle the underlying causes of Alzheimer’s, there’s understandably been a huge amount of interest in them. Clinical trial results for lecanemab show that the drug slowed the speed at which memory and thinking skills got worse by 27%; for donanemab this figure was more than 20%.??

These figures are modest but, for many, meaningful – though we must also remember that these drugs are not without their side effects, some severe.??

We’re currently waiting for the Medicines and Healthcare products Regulatory Agency (MHRA) and National Institute for Health and Care Excellence (NICE) to make their decisions on both lecanemab and donanemab, with the NICE decision dictating whether these drugs will be available on the NHS.?

If lecanemab and donanemab are approved for use, there will inevitably be a surge of people coming forward for assessment and diagnosis – for which memory services need to be prepared. Even if they’re not eligible for a treatment, people still deserve a high-quality diagnosis followed by post-diagnostic support.?

Equally, with over 100 Alzheimer’s disease treatments in the pipeline, we know that many more drugs are likely to be put forward for regulatory approval in the near future.?

And, as research develops and trials continue, drugs will emerge that are even more effective, with fewer side effects.??

The urgency to prepare healthcare systems for new dementia treatments, then, remains, regardless of what happens with lecanemab and donanemab.??

New Government, new agendas?

With a new UK Government comes a new Cabinet – and the chance to start (and continue) conversations about our priorities.?

Labour’s manifesto reiterated the party’s commitment to double the number of CT and MRI scanners via its Fit for the Future Fund, helping to catch conditions earlier.??

But this has benefits beyond just diagnosis – MRI scans are also needed to monitor side effects associated with new treatments. As such, this is a pledge we’re keen to see realised as soon as possible.?

Labour also intends to reform incentive structures to drive innovation and faster regulatory approval for new technology and medicines. Alongside this is a commitment to maximise the UK’s potential to lead the world in clinical trials, with the aim of making them more efficient and accessible, and improving recruitment.?

The manifesto states that ‘this will mean putting Britain at the forefront of transforming treatment for dementia,’ the sole mention of the condition in the 136-page document.??

Of course, as long as the right checks and balances are in place, speeding up approval processes for treatments is welcome – as is improving clinical trials. We know that there are several specific barriers to people living with dementia participating in trials currently, including needing to diagnose more people at an early stage of disease progression.??

We also have the prospect of a new First Minister in Wales, and a new Government in the Northern Ireland Assembly, meaning that across the 3 nations in which Alzheimer’s Society works, we have the potential to influence lots of fresh conversations on dementia.?

Time to publish plans?

It’s early days for this new Government, and we’re eager to collaborate and engage on its health mission in the months ahead. With a Spending Review on the horizon, the Government has an excellent opportunity to get dementia diagnosis ready for the future.??

The missing part of the puzzle is the need for plans to be published on how healthcare systems will deliver new treatments to achieve the transformation to which Labour itself aspires.?

With estimates for the eligible population for disease-modifying treatments ranging from 50,000 to 280,000 people, we need to know more about how health systems are going to roll out new treatments – from plans to invest in diagnostic technologies and staff, to which testing methods might be upscaled, to what extent, and when.??

Without a suitably rapid upscaling of diagnostic capacity, we risk people missing out on new treatments if and when they are approved. But we’ll also miss using this moment as an opportunity to improve dementia diagnosis for the benefit of everyone living with the condition.?

Prioritising early, accurate dementia diagnosis is not only important for confirming eligibility for new treatments – it has a range of benefits for all, from helping people plan for their future and access care and support, to helping to avoid early or unnecessary admission to a care home or hospital. ?

I’ll finish by reiterating our key call: we want to see the NHS and HSC system publishing plans on how they’ll deliver new treatments, including content on the prioritisation of diagnosis.??

Dementia prevalence is on the rise, and regulatory decisions are expected imminently on lecanemab and donanemab. Time is of the essence – and the time for change is now.?

Rachael Martin-Ball, National Influencing Manager - Alzheimer’s Society