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John Dalrymple-Fraser, a 78-year-old retiree in Peterborough, Ont., is in the early stages of Alzheimer’s disease.Photography by Shay Conroy/The Globe and Mail
Lecanemab is the first new treatment for Alzheimer’s disease to reach Canada in 20 years, and Health Canada’s recent authorization of the disease-modifying drug has understandably triggered hope and excitement.
But for some researchers and clinicians who treat the disease, the development also represents a complicated story – one where enthusiasm for a new and desperately needed drug is tempered by sobering realities around its efficacy, accessibility and impact on an already strained health care system.
“This approval is both an incremental improvement and a paradigm shift,” said Andrew Frank, a cognitive neurologist at Bruyère Health memory clinic in Ottawa and president of the Consortium of Canadian Centres for Clinical Cognitive Research. “It’s not a cure. It is an incremental benefit that we hope would lead to more discoveries in the future.”
In Canada, the Alzheimer Society estimates that more than 770,000 people are living with dementia, an umbrella term for reduced memory and thinking skills – a number that’s expected to rise to nearly one million by 2030.
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Alzheimer’s disease is the most common cause of dementia, and drug companies have poured billions into searching for a “disease-modifying therapy” – a drug that tackles the root causes of the disease, rather than just treating its symptoms. After decades of failures, the arrival of monoclonal antibodies such as lecanemab, sold under the brand name Leqembi, was greeted excitedly by the global dementia community. Some even speculated they could be the “beginning of the end” for Alzheimer’s disease.
But real-world and clinical trial data have since painted a more muted picture. The drug only slows the progression of disease by a modest amount for patients with mild cognitive impairment or early Alzheimer’s; clinical trial data show that participants who took the drug over 18 months saw their disease progression delayed by about five months compared with those in the control group.
“We need to be very clear with the public health system that the clinical effect is very, very modest,” said Manuel Montero-Odasso, a geriatrician and clinician-scientist with Western University who recently served as president of the Canadian Geriatrics Society.
He said he is also “very worried” about eligibility for the drug. In the United States, where lecanemab has now been available for two years, only between 8 per cent and 15 per cent of people who’ve wanted the drug have been eligible to receive it, he said.
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Mr. Dalrymple-Fraser holds a photo of himself and his mother on his wedding day. Both of his parents suffered from the disease.
The drug, administered through intravenous infusions every two weeks, also requires a dramatic rethinking of Canada’s current dementia-care landscape. In 2021, a paper published by the journal Alzheimer’s & Dementia warned that Canada would have the longest wait times for disease-modifying drugs such as lecanemab among G7 countries, because of its “limited capacity for memory care.”
In order to qualify for lecanemab in Canada, patients must first undergo genetic testing to determine whether they’re at heightened risk of developing serious side effects, as well as tests to detect the presence of beta-amyloid plaques – the sticky protein that builds up in the brain, triggering a cascade of events that lead to brain-cell death.
There are currently only two tests for detecting amyloid, neither of which are routinely performed when diagnosing Alzheimer’s in Canada: a lumbar puncture or spinal tap, and an amyloid PET scan. According to Dr. Frank, public coverage for either procedure is extremely limited.
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All of this, combined with lecanemab’s price tag – currently unknown in Canada, but set at US$26,500 annually in the U.S. – translates to significant barriers to access. A major outstanding question is whether the drug will be publicly covered; in Britain, the body that advises the National Health Service recommended against publicly covering lecanemab, arguing the benefits were too small to justify the cost.
Patients on lecanemab will also require at least five MRIs within six months of starting the therapy in order to get a baseline picture and monitor for side effects, which can include brain microbleeds and swelling. The Canadian Association of Radiologists recently warned of a deepening crisis in wait times for medical imaging such as MRIs.
Dr. Montero-Odasso worries that lecanemab’s introduction could divert significant resources away from other supports or interventions that could meaningfully affect Alzheimer’s patients and their families.
But he also sees the profound impact that such drugs can have, even with all their flaws and challenges.
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Mr. Dalrymple-Fraser enrolled in one of the clinical trials studying lecanemab two years ago. He still doesn’t know if he’s receiving the actual drug or the placebo, but he has no doubt about the potential value that such a drug could have.
John Dalrymple-Fraser, a 78-year-old retiree in Peterborough, Ont., has seen the devastating effects of Alzheimer’s firsthand. Both of his parents suffered from the disease, as did two of his first cousins.
He is now in the early stages of Alzheimer’s himself. Two years ago, he enrolled in one of the clinical trials studying lecanemab. While he still doesn’t know if he’s receiving the actual drug or the placebo, he has no doubt about the potential value that such a drug could have, even if it only gives him a few more good months.
“It could make all the difference in the world,” Mr. Dalrymple-Fraser said. “If tomorrow, I couldn’t remember my family [but] I’m told that taking this drug [means] I could for at least five more months? Give me that drug.”
