NHS Scotland rejects new Alzheimer’s drug donanemab, dealing blow to dementia treatment hopes
A woman living with Alzheimer’s disease has said dementia research has suffered a “devastating blow” after a new treatment was rejected for use by NHS Scotland.
Donanemab, a drug designed to slow the onset of dementia, works by targeting one of the causes of the disease, rather than just treating its symptoms. But the Scottish Medicines Consortium (SMC) has ruled that there isn’t enough evidence to prove how well it works.
Rynagh, who was recently diagnosed after retiring, described the news as a major setback. Born in Ireland, she moved to the US and studied at New York University before coming to Scotland, expecting to enjoy a peaceful retirement. Instead, she received a life-changing diagnosis of dementia.
Now focused on pushing for progress, she says the rejection of donanemab is a blow to those hoping for a breakthrough.
“What would it take to approve a drug for dementia?” she asked. “Because it seems to be lost in space for people. There aren’t annual check-ups like with other diseases. So there’s no proper record of decline, which is unusual when you think about how progress is made with other diseases over time.
“Think about polio, leprosy, and cancer. These were known many years ago, but we’ve tackled them due to need and cost.
“I understand that cost is a factor, but the burden of dementia on society—even compared to those diseases—is tremendous. It’s not just the individual. It’s the community, the family.
“It’s the cost to the next generation, who lose out by providing care and not being able to support their own immediate families in the way they would.”
Donanemab is administered by infusion into a vein in the arm. The antibodies then bind with amyloids in the brain—proteins that build up in people with Alzheimer’s and contribute to cognitive decline. These antibodies trigger immune cells to clear the amyloid, potentially slowing the disease.
The Scottish Medicines Consortium rejected the drug for NHS use, stating there was not “enough evidence of how well it works.”
Pharmaceutical company Lilly, which manufactures the treatment, said the decision “does not consider the clinical efficacy and cost-effectiveness” of donanemab.
The rejection has raised concerns among campaigners and researchers about the future of dementia treatment and innovation.
Henry Simmons, chief executive of Alzheimer Scotland, said: “The process that all drugs go through at present in both NHS Scotland and England is a reasonable one. However, we don’t think it is a reasonable way to tackle the issues we face, given the size and scale of dementia. We are calling for a rethink.”
There is still hope the SMC will reconsider its decision. In the meantime, Rynagh is urging people living with dementia not to give up—and calling on the public to stay aware and engaged.
“Well, when it comes down to it, it is the public,” she said. “If the public doesn’t have awareness, they won’t push.
“You know, about 66 per cent—two thirds—of people with dementia are women. Women are usually the caregivers, and then they become the ones needing care. It creates this cycle—and it’s increasing, not decreasing.
“And with the population pyramid shifting, the elderly population is growing. It’s a disaster that should be clearly visible.
“It’s not like we’re seeing just one-seventh of the iceberg. It’s now so far above the surface that we should be able to go around it, go through it, and disperse it—but we’re still not talking about it at the level we need to.”
