als in canada: stats, impact and resources
4 minute read
the daily caregiving activities required by als patients are performed by their own family members out of necessity.
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als, or amyotrophic lateral sclerosis, is devastating for people and their families to go through. the neurodegenerative disease affects nerve cells in the brain and spinal cord so that every muscle weakens and breaks down over time. mobility and function diminish, leaving people dependent on care. treatments are limited and there’s no cure.
als is often called lou gehrig disease, named after a famous baseball player with the new york yankees who died from the disease in 1941 at age 37. prior to his diagnosis, he noticed several of the disease’s symptoms while playing on the field, including a loss of strength, falling, slipping, and loss of coordination. on june 2, 2021, major league baseball (mlb) launched the inaugural lou gehrig day across the mlb network to raise awareness of als and rally the fight for a cure.
als stats in canada
in canada, about 3,000 to 4,000 people are living with als. each year, 1,000 new cases are diagnosed and 1,000 people die from the disease. the average life expectancy after diagnosis is typically two to five years.
other key numbers:
- the most common age of onset is 55 to 65, however als can happen to people of all ages, with some cases reported in teens. men are diagnosed slightly more often than women.
- everyone experiences als differently. the progression impacts some people with rapid decline in three to six months while others have a slower progression.
- als strikes a small percentage of the population, with approximately one in 400 people affected.
- environmental factors, such as smoking, have been associated with an increased risk of als.
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impact of als on canadian society
today, 80 per cent of canadians diagnosed with als will die within two to three years after onset. those years are extremely costly for the patient and the family, who reduce employment and earning power. on average, when someone is diagnosed with als, a working age family can expect to incur costs averaging $150,000 to $250,000 during the short window of the diagnosed patient’s life, according to als canada. some advocates say that’s a low estimate. for context, people with als have significantly higher mean annual costs than patients living with hiv/aids, stroke survivors during the first year after stroke, and alzheimer’s disease.
in als, symptoms or patterns of progression differ from person to person. but the universal progressive muscle weakness and paralysis typically forces people out of work shortly after diagnosis. home care supports becomes critical as people lose the ability to move, eat, swallow and even breathe, but these support through provincially funded community care programs have funding limits and availability differs across canada.
the economic burden of als to patients and families is increasing as direct costs grow for equipment, home renovations, palliative medication, assistive devices, and medical services. then factor in the indirect costs of income from job loss, forced early retirement and extended unpaid absence of caregivers.
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as als canada notes, “direct costs: average annual cost per patient = $32,337 (61 per cent – $19,574 are out-of-pocket expenses). indirect costs: average annual cost per patient = $56,821. at almost double the value of the direct costs, indirect costs represent a huge burden to als patients and families.”
there’s also the question of where people with als can go for care given the specialized care requirements are not readily achievable in many hospitals and long-term care facilities.
so, the daily caregiving activities required by patients are performed by their own family members out of necessity. they take unpaid absence from their jobs, making income a greater challenge and derailing career plans. as well, als patient caregivers are only eligible for a limited period under the compassionate care benefit program.
resources and support for als in canada
the leading associations representing als are:
chronic disease is isolating, and connecting with support groups for peer learning and friendship can help people navigate the journey of living with als and understanding what to expect as the disease progresses. these leading associations also are committed to raising awareness and funds for als research, so offer a way for people with als and their families to get involved in the als community and have their voices heard.
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research for als focuses on cell mechanisms, genetics, environmental toxins, immunology, and biomarkers, looking for disease causes and therapies to improve and extend lifespan. canadian researchers are also exploring innovative approaches including focused ultrasound to deliver therapies to the brain (that cross the blood-brain barrier) and investigating the role of proteins in disease progression. als canada offers a list of current trials conducted at sites across the country.
there’s a spotlight on als research as part of canada’s rare disease research initiative with the federal government’s commitment in 2024 of $1.5 billion over three years to improve access to new and emerging drugs, and boost investments in critical research. with increased funding, awareness and support, als advocates and experts say there’s a lot of promise and hope, so the momentum is positive.
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