For decades, families affected by Alzheimer’s have had little more than hope to cling to.
Today, however, there are treatments that can slow the progression of early-stage Alzheimer’s. After years of setback and frustration, finally there are medicines that change the trajectory of the disease rather than simply managing symptoms.
We’ve proven that science can address the issue. Now the challenge we face is practical.
New treatments
In the UK, these new treatments are not available in the NHS. If you want them, you have to pay for them. That’s because of the way the NHS makes decisions about what medicines it will fund – this approach aims to balance the costs to the NHS against the benefits of any treatment. In the case of two new treatments for Alzheimer’s disease neither was judged as “cost effective”.
New treatments pose real challenges for health systems when making these decisions. The data about them is limited – usually just from a clinical trial over a fixed period in group of participants who don’t fully reflect the people who will use the treatment in the health system. It’s no surprise then that the first treatments to slow the progress of Alzheimer’s would pose uncertainties about their longer-term use in the real world.
Clinical trials have shown that these treatments slow the progression of Alzheimer’s for those in the early stages of the disease. In countries where the treatments are being used more widely than the UK, the evidence suggests the benefits of treatment last longer than initially thought and that there is a lower incidence of serious side effects.
This is positive news but even if the NHS were to fund these new treatments today, introducing them into the health service would not be straightforward. The NHS currently lacks the infrastructure to identify who might benefit and how people receiving the new medicines would be managed.
That is why we at Alzheimer’s Research UK are calling on the government to work with industry, researchers and the NHS to set up pilot trials. The trials would offer the medicines through selected clinics and enable the NHS to understand how these new Alzheimer’s drugs could be used in practice. Pilot trials would also gather real-world evidence about the medicines’ impact on people’s lives.
New era
The two Alzheimer’s drugs licensed as safe and effective by the UK medicine regulator are lecanemab and donanemab. They are not cures, but for many people in the earliest stages of Alzheimer’s they slow the disease’s progress. Even a modest reduction in disease progress can mean extra months of independence and more time with loved ones.
In the UK, some people eligible for the new treatments are already benefiting from them privately. We want to see people eligible for these treatments to get them in the NHS.
Piloting new treatments in the NHS
Pilot trials offer a practical way for the NHS to test how these new treatments work on a small, controlled scale. Information from pilot trials will enable the NHS to learn lessons on how to organise services to provide drugs for dementia.
A pilot programme would allow NHS leaders to understand:
- How to create systems that identify the people who would benefit from new treatments. This would include how to increase the numbers of people diagnosed with early disease.
- How many trained staff are needed and how best to use them.
- Which people benefit most from new treatments in the real world, not a trial setting. Pilot trials would be able to offer treatments to patients from more diverse backgrounds than those who took part in clinical trials.
- How best to organise systems to monitor safety and ensure fair access across the UK.
Championing pilot trials isn’t about accelerating access to new treatments irresponsibly. It’s about preparing carefully and intelligently so that when future treatments are approved for NHS use, the health service is set up to deliver them fairly and safely.
Other fields – from oncology to cardiology – have long used pilot testing (or what is described as managed access) to guide the introduction of new or complex therapies while gathering more evidence about how they work in the real world. Dementia treatments should be no different.
An opportunity
At Alzheimer’s Research UK, we believe there is an opportunity to plan how to introduce the coming treatments that can slow the progression of dementia. We want to see:
- NHS pilot trials that build evidence and experience needed for routine use of new treatments.
- Diagnostic services capable of identifying people at early stages of their disease – early enough for treatment to be effective.
- Modernise how the value of dementia drugs is evaluated to reflect the true societal impact of slowing decline among an increasingly ageing society.
None of this is intended as a criticism of the health service: the rising pressures clinicians and managers face every day are clear. However, the current position simply demands commitment to innovation, preparation and, above all, to people living with Alzheimer’s and other types of dementia.
Transformation
Every major advance in medicine relies on people who are willing to take the next step, even when the path is unfamiliar. The UK has a real opportunity to transform life with Alzheimer’s. But opportunity only becomes impact when systems are ready to deliver.
Pilot trials will help ensure the NHS is prepared for the new generation of treatments being tested across the globe. It will make the UK a more attractive location for setting up clinical trials meaning some people with dementia will have access to newer treatments sooner. And they would ensure that when change comes, it comes for everyone, not just those who can afford to pay privately.
Science has moved forward. With the right steps now, the health system can move with it. Families across the UK deserve nothing less.