Alzheimer’s Research UK calls for urgent preparation plan for future access to dementia treatments

Alzheimer’s Research UK, the UK’s leading dementia research charity, is calling for an urgent plan for managing how new medicines are brought to patients, in a report that highlights several obstacles it fears could delay delivery of the next wave of dementia treatments. The report, Treatments of Tomorrow: Preparing for breakthroughs in dementia, outlines a number of challenges and pressures in England’s healthcare system that may pose problems for the roll-out of disease-modifying treatments for dementia. The charity argues that as research continues to make progress, these challenges should be tackled now to pave the way for future scientific advances that could improve treatments and care.

The comprehensive report recommends a number of actions, including:

• Better ‘horizon scanning’ to help forewarn the NHS about new treatments and diagnostic tools in development;
• Early discussions about the possible impact of disease-modifying dementia treatments between regulators, NHS decision-makers, the pharmaceutical industry and charities;
• Scope for drugs companies and the health service to agree early or conditional access to new disease-modifying treatments where appropriate, alongside ongoing ‘real world’ data collection to understand longer-term effects;
• Ensuring that any changes to the system recommended by the government’s ongoing Accelerated Access Review are suitable for new dementia treatments.

Dementia affects 850,000 people in the UK, with that number predicted to rise to over 1 million by 2025 as the population ages. With no treatments yet able to affect the course of the underlying diseases, global efforts to develop disease-modifying treatments have begun to accelerate in recent years, spurred on by the G7’s aim of developing such treatments by 2025. The number of treatments in clinical trials for Alzheimer’s disease – the most common cause of dementia – has nearly doubled in the past three years, and 12 potential therapies are now in the later stages of testing. Many of these aim to slow the underlying disease in people with mild symptoms.

These trials are yet to be completed, but Alzheimer’s Research UK is seeking to ensure that the country’s health system would be prepared if new treatments prove successful. Its report highlights the steps new therapies need to pass through before being given to NHS patients – including regulatory approval, national decisions on cost-effectiveness and local prescribing decisions – and identifies a number of challenges that it fears could delay the take-up of effective new dementia therapies. These include difficulties demonstrating the effects of disease-modifiers in the early stages of dementia, and concerns about the way a treatment’s potential impact on social care might be valued. The charity believes these challenges must be addressed now in order to plan for future advances in research.

Brenda Whittle and her husband Stephen, from Haringey, understand the need for new dementia treatments only too well – Brenda, 74, was diagnosed with Alzheimer’s disease in 2014, and is currently taking part in a trial to test a new Alzheimer’s treatment. She said:

The symptoms gradually crept up on me – over the last few years there were times I couldn’t remember where I had put things, why I had done something or even at times where I was. At first I would get angry, but now I’ve got a diagnosis I’ve accepted it and I’ve been able to get involved in research. Being part of a trial can be difficult sometimes, but it gives me hope. If a treatment is found I could be helping thousands of people worldwide as well as myself, and I would want as many people as possible to reap the benefits.

Dr Matthew Norton, Director of Policy and Strategy at Alzheimer’s Research UK, said:

If we are to make sure scientific advances benefit the people who most need them, we must rethink the way new treatments and technologies are taken up by our health system. We know there will be huge demand for any new treatments for dementia, and while progress is being made in research, it’s important to ready ourselves for developments that may be coming through the pipeline. This report outlines some of the complex challenges that will need to be considered, and Alzheimer’s Research UK is now working with health services and other organisations to understand how to overcome them.

The government’s ongoing Accelerated Access Review provides an opportunity to examine this issue, and has already highlighted that any changes to the system must work for dementia, our greatest medical challenge. We look forward to seeing the review’s recommendations and hope this work, together with our report, will spur action to lay the groundwork for future access to dementia treatments. We recognise that it will take time to address the many challenges identified in this report, which is why work must begin now if we are to be prepared for tomorrow’s treatments.