Donanemab patient: ‘The drug kept me feeling normal, but i’m scared about what happens next’
Peter Almond finished a trial for Donanemab in September having been on the drug for three years
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A retired journalist who took part in the clinical trial for the new Alzheimer’s drug has described how he feels “as normal as a 78-year-old can be” but fears what happens now he has to stop taking it.
Peter Almond finished a trial for Donanemab in September having been on the drug for three years.
Donanemab is one of the new “disease modifying” treatments for Alzheimer’s disease, which works by clearing the protein amyloid from the brain.
Mr Almond, who lives in Esher, Surrey, was diagnosed with mild cognitive impairment (MCI) in 2018 and has taken part in two 18-month trials for Donanemab.
The dryg is given to patients via an intravenous drip once every four weeks.
Mr Almond, who has not had any side effects, received his treatment at a trial centre in Guildford, as well as regular MRI and PET scans.
The Alzheimer’s Research UK fundraiser is worried that his MCI will develop into Alzheimer’s disease now he has finished his course of treatment.
MCI is a condition where memory and thinking problems are mild but noticeable.
Not all cases of MCI lead to dementia but it can be the early stages of diseases such as Alzheimer’s.
“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 said he is disappointed that the treatment will not be made available on the NHS.
He added: “I understand why Nice (the 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.”
As well as taking part in a drug trial, Mr Almond has also fundraised to support dementia research.
He completed the London to Brighton Bike Ride in June to raise money for Alzheimer’s Research UK.
He said: “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.”