A retired Surrey journalist who participated in the clinical trial for a new Alzheimer's drug, has shared his experience, stating he feels "as normal as a 78-year-old can be". Peter Almond completed a three-year trial for donanemab, a new "disease modifying" treatment for Alzheimer's disease that works by clearing the protein amyloid from the brain.
Diagnosed with mild cognitive impairment (MCI) in 2018, Mr Almond, from Esher, took part in two 18-month trials for donanemab, receiving his treatment via an intravenous drip once every four weeks at a trial centre in Guildford. Despite undergoing regular MRI and PET scans, he experienced no side effects.
Now an Alzheimer’s Research UK fundraiser, Mr Almond expressed concerns that his MCI could develop into Alzheimer's disease following the end of his treatment. While MCI is characterised by mild but noticeable memory and thinking problems, not all cases lead to dementia, though it can signal the early stages of diseases like Alzheimer's.
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"I can’t say for certain that the drug has been slowing down my condition, but I feel that donanemab has helped keep me at the same level as when I started on the trial three years ago," Mr Almond said, "I understand the benefits of the drug are modest and that is as much as we can expect from any of these new Alzheimer’s drugs at this point.
"But if it has been stopping my condition developing into Alzheimer’s then it has had a significant impact on my life. As of now I feel as normal as a 78-year-old can be. I can read, write, think, plan, walk, drive and even run.
"But I don’t know what will happen in the future. Will the amyloid build back up again in my brain now I’m no longer taking the drug? The thought of Alzheimer’s disease, of not understanding where I am or what I am doing, is scary to say the least."
Mr Almond expressed disappointment that the treatment will not be made available on the NHS, saying: "I understand why Nice (National Institute for Health and Care Excellence) is unable to accept the drug because of the cost involved. But the Government has to pay many millions of pounds to support people in the latter stages of Alzheimer’s disease and the care home sector needs much more income from the state. I think it is clear the drug does work to some degree, particularly for people who are or may be in the early stages of Alzheimer’s.”
Hilary Evans-Newton, Alzheimer’s Research UK’s chief executive, described the news donanemab wouldn't be offered on the NHS as “another frustrating setback” after a similar drug, lecanemab, was turned down in August. Estimates suggest around 70,000 people in England would have been eligible to receive donanemab.
She added: “We’ve written to the Health Secretary again, calling for his leadership to bring together NICE, NHS England and industry so that people with dementia in the UK aren’t left behind.”
In addition to participating in a drug trial, Mr Almond has also fundraised to support dementia research, completing the London to Brighton Bike Ride in June to raise money for Alzheimer’s Research UK.
He added: "Donanemab and the other new drugs currently in trials are just the start. So it’s vital to raise money for research to continue the progress and help the hundreds of thousands of people who are living with dementia."
The UK’s largest dementia charity, Alzheimer’s Society, funded research 30 years ago responsible for identifying the role of the amyloid plaques targeted by donanemab in Alzheimer’s disease
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