Dr. Sharon Cohen is a behavioural neurologist and the medical director and site principal investigator of the Toronto Memory Program.
There are currently more than 450,000 Canadians living with dementia. These numbers will double by 2030 and increase to 1.7 million by 2050, according to the Alzheimer Society of Canada. Alzheimer’s disease is the most common cause of dementia and is chronic, progressive, severely disabling and ultimately fatal. It is one of the most feared diseases of our time.
As a neurologist and medical director of the Toronto Memory Program, I see every day the heartbreak of individuals who dread the loss of independence that comes with Alzheimer’s, and the dismay of becoming a burden on their families. I also see the despair of families witnessing their loved ones gradually slipping away.
However, Alzheimer’s disease affects more than the stereotyped patient, often seen as elderly, frail and confused. In early disease stages, with symptoms often conflated with “normal aging,” many individuals diagnosed with Alzheimer’s are still living independently in their own homes, contributing to society and being active members of their families. They may be working, driving, travelling, pursuing hobbies and having meaningful relationships with friends.
It’s time to shake off the stigma and myths that have surrounded this disease and have held people back. We need to acknowledge that there is hope and that new and emerging treatments are shaping the future of Alzheimer’s diagnosis and treatment. The valiant contributions of researchers and patients, including those across Canada, have remarkably led to the full approval of two disease-slowing treatments in the U.S. in the past year, and health regulators in Britain have just approved the first of these – lecanemab.
Sold under the brand name Leqembi, lecanemab is a treatment already approved in seven countries (including Japan, China, South Korea, Israel and the United Arab Emirates). This drug is indicated for those with mild cognitive impairment or mild dementia owing to Alzheimer’s disease – and it works. It robustly clears amyloids (abnormal protein deposits) from the brain and in turn slows decline in cognition, daily function and quality of life. It buys individuals precious time at the early stages of disease, when time is most valued, and reduces the risk of individuals progressing to more disabling, costly and distressing stages.
The British health authority deemed Leqembi safe and effective after conducting a careful review of the drug’s Phase-3 study data. This approval is significant and long-awaited, yet bittersweet, as Britain’s public payer, the National Institute for Health and Care Excellence (NICE), has issued initial guidance recommending against cost coverage. NICE’s recommendation may change as advocacy groups and expert clinicians make the case that the benefits of Leqembi are not trivial as NICE has suggested.
As we wait impatiently for Health Canada to issue its decision on approval for Leqembi, we, as Canadians, need to reframe how we view Alzheimer’s disease. This is a disease, like any other complex, progressive disease, that should be identified and treated early and for which individuals who can benefit are given access to life-enhancing treatments. Our approach to early diagnosis, and early intervention, should be no different for Alzheimer’s than for cancer or any other serious diseases, where buying time is critical and the assessment of benefit versus risk of treatment should consider a patient’s values and goals.
Unfortunately, in considering Alzheimer’s disease, we all too often demonstrate paternalistic, and frankly insulting, patterns of “overprotecting” individuals from potential side effects. There is a clear double standard when it comes to agency approvals and cost coverage for Alzheimer’s treatments compared with treatments for other diseases.
Treating any disease comes with risk. In cancer care, we call these “trade-offs,” i.e. is the treatment worth the risk for more time with loved ones? We should view Alzheimer’s disease in the same way and let patients decide what risk is acceptable for the benefit of slowing their disease.
Patients and families have a lot on the line. Slowing down the progression of Alzheimer’s disease means families can stay together longer, independence can be maintained and lives can continue to be lived vibrantly for longer periods. However, this disease does not wait for health regulators and payers to make decisions over months or years; it progresses relentlessly, and once the early stages have passed, the treatment opportunity for a drug like Leqembi is lost.
Let’s not deny legitimate treatment opportunities to Canadians. Let’s make sure that we have access to meaningful, early treatments for Alzheimer’s disease.