The wife of a man who has Alzheimer's has told how she believes a new wonder drug set to be delayed for use in Scotland would have "meant the world" to a family like hers.
It comes as we reveal Brexit will delay the ground-breaking drug getting to Scots patients, a leading expert has warned. The drug, Lecanemab, was hailed as a new wonder pill which can slow down Alzheimer’s, after studies were released in the US last week.
But because Scotland is no longer in the EU, doctors have warned Alzheimer’s sufferers and their families it could take several years to be approved for use in the UK. Existing trade deals between the EU and US could see the drug fast-tracked for use in the rest of Europe.
Robert Gray, from Glasgow, was the infection control manager at Scotland’s Golden Jubilee Hospital until his early retirement. But once he stepped away from work, his wife Val, 63, noticed changes in his behaviour which ultimately led to his Alzheimer’s diagnosis last year.
Since then Robert, 67, has seen a deterioration in his condition which means he is often unable to remember his wife and children’s names, has seen his mobility and speech deteriorate and has left him incontinent.
Val said it would have “meant the world” to the family had a drug like Lecanemab been available to Robert. She said: “It would have meant a lot for us to have had more time with him the way he was. Being able to hold it at bay would have been amazing.”
And she said the news that Brexit would keep the drug out of the UK for longer was “shocking”. She said: “That is so unfair. Everybody who has this condition should be able to get it as soon as possible. “It is just not fair for everybody else who could benefit from it. We would have loved to have had that chance.
“To get it at an early stage would have been great because it can get worse quite quickly. In just a few months there was a huge change in what Robert was able to do.”
Robert used to play in a band but can no longer remember how to play guitar and his favourite pastime of running is no longer possible.
Val is now undergoing counselling to help her cope with the man she used to know. She said: “It is like I am watching a big child now.”
Val explained: “Robert was only diagnosed in January 2021 but he had symptoms about five or six years before. I noticed something wasn’t quite right. The first signs were mood swings and memory loss. I asked him to go to the doctor but he said there was nothing wrong with him.
"Then I noticed him shuffling as well. Since the diagnosis, I have noticed a drastic deterioration. He can have good times and bad times but the bad are starting to outweigh the good. It is really stressful and you need a lot of patience at times.”
Val now needs the help of carers, but her son, Leigh, 35, who lives nearby, and daughter, Beth, 26, who has returned from living in Canada, also assist her.
She said: “The old Robert sometimes comes back but that is very rare now. Things for me and him are not the same. He knows I am his wife but he thinks there are two of me and he sometimes forgets my name. He sometimes struggles with our children’s names, but he knows them.”
Dr Emma Law, Manager of NHS Research Scotland’s Neuroprogressive and Dementia Network, was in San Francisco last week when the “very exciting” results of clinical trials on Lecanemab were released at a global conference.
But she told the Daily Record that Brexit will delay the drug being used on patients in Scotland. She said: “Lecanemab is very exciting news in the dementia world. There was a real buzz about the conference, real optimism which was great."
But in a major blow to the hopes of thousands of Scots whose loved ones are suffering from Alzheimer’s, she added: “Brexit will hold it back. It will first of all go to America with the FDA and then it will go to Europe. And only then it will come to the UK. Because we are now out of the EU we will be lower down the list for getting access to a drug like that.”
And she said the cost to the UK, where there is less buying power than the EU as a whole, could also affect the price which she already expects to be huge.
She said: “ It likely will cost more unless the UK Government can negotiate. They managed to negotiate with Pfizer for the Covid injections and managed to keep the cost down but whether they could do the same here, I don’t know.”
Dr Law claims Brexit has been a “disaster” for researchers in the fight against Alzheimer’s, saying: “There is not one single researcher who welcomes Brexit. Everybody knew that it would cause us problems and it has. A lot of the European funding has disappeared because we are not in the EU. It has just been a disaster for researchers in the UK.”
Last night, MSPs called on the UK Government to explain how they intend to speed up the process of getting the drug to patients. Scots Lib-Dem leader Alex Cole-Hamilton said: “This is something we warned about in the Remain campaign.
“Dementia is often referred to as the long goodbye but due to the calamity of Brexit, British patients who have the chance to offset that long goodbye will be stymied because we are at the back of the queue for this treatment drug.
“Clinicians and patient groups were warning during the referendum and Brexit negotiations that patients would pay the price from Tory isolationism.”
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