Alzheimer’s Research UK Calls for Dedicated Dementia Drugs Fund

Alzheimer’s Research UK is calling on the Government to establish a dedicated Dementia Drugs Fund that would create a route for promising new treatments to reach people who need them the most.

The charity says the fund would enable people to benefit from the latest treatments while the NHS gathers evidence to prepare for current and future drug development.

The call comes while negotiations continue between NICE (National Institute for Health and Care Excellence) and manufacturers of the first medicines capable of slowing the progression of Alzheimer’s disease – lecanamab and donenamab – to see if the medicines will be made available on the NHS. With more potential treatments coming through the research pipeline, UK patients are likely to miss out on the progress research is making if the drugs are not given the green light.

Hilary Evans-Newton, CBE, Chief Executive of Alzheimer’s Research UK, said: “A Dementia Drugs Fund could provide a practical way to support access to promising new treatments, while building the evidence, clinical capacity and infrastructure needed to make them available responsibly and sustainably through the NHS.

“We cannot allow the system to lag behind the science. We have worked too hard, and come too far, to let the opportunity these breakthroughs represent slip away. The challenge now is to turn scientific progress into real progress for people living with dementia.”

The call builds on growing demands for dementia to receive greater national focus. Earlier this year, Baroness Casey called on the Government to send a clear signal that dementia and Alzheimer’s disease are a government priority, including through greater investment in dementia trials. She also called for faster progress on the Modern Service Framework for Dementia and Frailty and the appointment of a dedicated Dementia Tsar.

“A dedicated Dementia Drugs Fund could enable carefully managed access to these drugs while decisions are made on wider use through the NHS. It would generate vital real-world evidence needed to support the development of future treatments. Alzheimer’s Research UK believes that it shouldn’t be a choice between immediate, routine NHS delivery or not at all,” added Evans-Newton.

Slowing the progression of the disease even modestly, which has been shown in trials for the two licensed treatments, would be enormously meaningful for some people. Action now will prepare the NHS for future drugs.

Alzheimer’s Research UK also believes that any Dementia Drugs Fund should involve new investment rather than money being diverted from existing dementia services. It should complement work to improve diagnosis and treatment pathways and support implementation pilots that enable the NHS to learn how best to deliver these and future treatments, as the charity outlines in its report Ready for a Cure.

There is precedent for such an approach. The Cancer Drugs Fund was established to give cancer patients access to medicines that were not routinely available through the NHS. By September 2013, more than 34,000 patients had benefited from the fund, demonstrating the difference a dedicated route to new treatments could make to access. A Dementia Drugs Fund would need to be designed for the specific challenges of dementia, including diagnosis, monitoring and evidence generation.

Research is changing what’s possible for dementia treatment and diagnosis. Now the Government must make sure the NHS keeps pace.

Alzheimer’s Research UK will continue to advocate for people with dementia to get fast and fair access to the latest treatments.

The charity’s Ready for a Cure campaign is asking people to sign a petition calling on Government to take three practical steps to ensure the NHS is ready to deliver new treatments:

• Test: Deliver a national plan to bring new and better dementia tests into the NHS.
• Trial: Connect more people with dementia to clinical trials through a nationwide system.
• Treat: Establish a Dementia Drugs Fund to make new dementia treatments available while evidence is gathered about their use in the NHS.