Corinne Mills, the deputy chief executive at Alzheimer’s Society, said: “Disease-modifying treatments mark the beginning of a new era for Alzheimer’s drugs. For the first time, there are treatments that can slow the progression of dementia rather than just help with symptoms.
“Even slowing progression by a few months could mean more time living independently, more time at home with loved ones and more precious moments together before symptoms get worse.”
David Thomas, the head of policy and public affairs at Alzheimer’s Research UK, said: “Nice’s current assessment methods don’t sufficiently take the impact on families into account.
“Slowing the progression of Alzheimer’s, even for a few months, would be significant to those living with the disease and the people who care for them. It’s important the NHS enables access to such treatments for those who could benefit.”
A Nice spokesman said: “We recognise there is a debate about whether our health technology assessment fully captures the burden of dementia, including its impact on unpaid carers.
“These issues were re-examined by our independent appraisal committee and NHS England and the company will now explore all reasonable opportunities to secure a positive outcome for patients and the NHS.”
Why we need to do more to tackle dementia
By Chris Stokes
Last week, the Prime Minister spoke powerfully about his experience caring for his dad, who lives with advanced Alzheimer’s disease – and his accelerated review of social care has put the challenge in the spotlight in a way it hasn’t been for years. Listening to his speech reminded me of my own experience – I lost my dad to a different chronic disease that required years of ongoing care.
While there should be no moral hierarchy ranking the impact of different diseases, it is nonetheless the case that with Alzheimer’s and dementia, there is a particular sense of unfairness.
People are let down by the system long before they even receive a proper diagnosis, with an average wait of more than 3.5 years before having their disease confirmed, even though dementia and Alzheimer’s disease have been the UK’s leading cause of death for most of the last decade.
One problem is the perception that dementia is a normal part of growing old, rather than the symptom of a disease that deserves the same urgency as any other.
Can you imagine being told a family member has cancer, but the doctor is unable to confirm what type, how advanced it is, or how long they will be able to live independently? Whilst we have further to go in improving cancer outcomes, decades of progress in research and treatment have made that situation unthinkable. Yet it is the daily reality for those living with dementia.
This difference in approach between dementia and cancer comes down to how our health and social care system is set up. Patients with suspected dementia are diagnosed in memory clinics, with only around 2 per cent referred for the scans that lead to an accurate, biomarker-led diagnosis that confirms whether they have Alzheimer’s (the most common dementia).
Almost all go on to face considerable care costs, as the sufferer’s independence decreases, prompting their need for support and home adjustments to increase.
A minority face catastrophic costs of £100,000 or more, forcing families to sell assets such as the family home.
What’s more, the average per-person costs of the disease increase as the condition progresses and becomes more severe. Research commissioned by Alzheimer’s Society estimates that mild cases of dementia incur costs of £28,700, but when someone’s condition becomes severe, the financial penalty hits more than £80,000.
The British public can see the injustice; Alzheimer’s Society recently conducted a poll of more than 1,000 adults in England, and four in five said they wanted dementia made a national priority. It seems politicians, informed by the ongoing work of Baroness Casey, are beginning to agree too.
At Lilly, we strongly welcome the decision of the Prime Minister to bring forward the review of social care to next year. For the first time in several years, it feels like there is a sense of optimism around social care.
The science is moving too. There are now treatment options in the UK not currently accessible through the NHS. At Lilly we are working with the NHS and Nice to find appropriate treatment paths in the NHS for Alzheimer’s Disease.
We are arguing to the Government that the economic and health burden of Alzheimer’s disease is not adequately captured by the current way the UK system assesses medicines: the burden on carers and the deterioration in their own health, the cost to social care and the NHS of managing the disease, and the lost working days for adults whose parents are robbed of their independence and need intensive support.
Lilly is 150 years old this year, and for the past 35 years of our existence we have invested in Alzheimer’s research, spending billions over that time. We’ve faced setbacks along the way, but we have never quit. Because we know patients and carers are waiting for accessible pathways.
Social care is much bigger than a single disease. The system itself requires reform that should go far beyond dementia, including improving how we care for those of working age living with disabilities. But Baroness Casey was right when she chose to identify dementia as the “big hidden problem” facing Britain, and also something we fear the most.
The Prime Minister and so many other families like his have lived this. They will be familiar with what a diagnosis without answers looks like, and what it costs a family to get care without a strong system behind them.
With the Casey Review, the Government will have the evidence, the political momentum, and – for the first time – scientific innovation. What’s needed next is the will to match the science, with a system built to use it.
Chris Stokes is president and general manager of Eli Lilly and Company for the UK, Ireland and Northern Europe