If you’re caring for someone with Alzheimer’s disease, you may have heard about two promising new treatments that recently made headlines. Unfortunately, the news isn’t what families were hoping for. The National Institute for Health and Care Excellence (NICE) has decided that donanemab and lecanemab – the first drugs shown to slow Alzheimer’s progression – are too expensive for the NHS to provide.
This decision affects thousands of families across England, and we understand it may feel like a setback. Let’s break down what this means for you and your loved one, and explore what options remain available.
Understanding the Breakthrough – And the Disappointment
For years, dementia researchers have been working toward treatments that could actually change the course of Alzheimer’s disease. These two drugs, donanemab (developed by Eli Lilly) and lecanemab (developed by Eisai), represent a genuine scientific achievement. Unlike previous medications that only manage symptoms, these treatments actually help the body clear amyloid – a sticky protein that builds up in the brains of people with Alzheimer’s.
Clinical trials showed that both drugs can slow the rate of cognitive decline, potentially giving people extra months of independence. For families watching their loved ones struggle with this devastating condition, even a small delay in progression can feel precious.
As Prof Tara Spires-Jones from the University of Edinburgh notes, these drugs marked a historic moment: “There is hope for safer, more effective treatments on the horizon.” The trials were celebrated as a scientific triumph because they demonstrated that it’s possible to alter Alzheimer’s trajectory.
The Harsh Reality of Cost vs. Benefit
However, the celebration has been tempered by practical concerns. The drugs come with a staggering price tag of £20,000-£25,000 per patient per year in the US, though the NHS negotiated price remains confidential. With approximately 70,000 people in England with mild dementia who would be eligible, the annual cost could reach £1.5 billion for the drugs alone.
The financial burden extends beyond the medication itself. Patients require regular infusions every two to four weeks, frequent brain scans to monitor for dangerous side effects, and ongoing specialist care. These additional NHS resources would significantly increase the total cost.
Helen Knight, director of medicines evaluation at NICE, acknowledged that the news would be “disappointing” but emphasised that the benefits were “modest” at best while requiring “substantial resources.” She explained that approving these drugs “could displace other essential treatments and services that deliver significant benefits to patients.”
What the Drugs Actually Do – And Don’t Do
It’s important to understand exactly what these medications can and cannot achieve. Neither donanemab nor lecanemab can reverse Alzheimer’s disease or stop it entirely. Instead, they slow down the rate at which brain function deteriorates.
In practical terms, the drugs might delay the transition from mild to moderate dementia by four to six months. For families, this could mean additional time when their loved one can still drive, participate in family events, engage socially, and potentially live without requiring daily care assistance.
However, the clinical improvements are subtle. In lecanemab trials, patients scored just 0.45 points better on an 18-point scale that measures cognitive function from healthy to severe dementia. Prof Rob Howard from University College London suggests that real-world benefits “were too small to be noticeable” and notes that the cost would be “close to the cost of a nurse’s salary for each treated patient.”
Divided Expert Opinion
The medical community remains split on NICE’s decision. Alzheimer’s charities have expressed significant disappointment. Prof Fiona Carragher from the Alzheimer’s Society stated that “the science is flying but the system is failing,” calling the decision “highly disappointing.”
Hilary Evans-Newton, chief executive at Alzheimer’s Research UK, described the result as “painful” and warned that patients will miss out on innovations “not because science is failing, but because the system is.”
However, other experts support NICE’s position. Tom Dening, professor of dementia research at the University of Nottingham, said he was “in complete support” of the decision, arguing that the drugs’ benefits were “minimal” and represented a “distraction” from addressing the real challenges in dementia care.
Prof Dening emphasised the “unglamorous challenge of providing people with dementia and their families with activities, care and support that we already know are beneficial for their mental and physical health.”
What Happens Next?
The pharmaceutical companies have three weeks to raise concerns about the review process, after which the decision becomes final on 23 July. Both Eisai and Eli Lilly have announced their intention to appeal.
Nick Burgin from Eisai criticised the NHS, saying it “is not ready” for tackling Alzheimer’s and claimed their drug would have been rejected “even if Eisai provided lecanemab to the NHS for free.” Chris Stokes from Eli Lilly argued that “if the system can’t deliver scientific firsts to NHS patients, it is broken.”
The decision applies to England’s NHS, though Wales and Northern Ireland typically adopt NICE recommendations. Scotland has its own drug approval process.
Hope for the Future
While this news is undoubtedly disappointing, it’s important to remember that research continues. Currently, 138 dementia medicines are being tested in 182 trials worldwide. Future treatments may prove more effective, safer, or more cost-effective.
For families dealing with Alzheimer’s now, focus remains on proven strategies: maintaining social connections, physical activity, cognitive stimulation, and ensuring access to existing support services and treatments.
Support and Resources
If you’re caring for someone with dementia, remember that you’re not alone. While we wait for better treatments, numerous resources can help improve quality of life for both patients and carers.
This article is for informational purposes only and should not replace professional medical advice. If you’re caring for someone with dementia, please consult with healthcare professionals about the best treatment and care options for your specific situation.
