Burden of ALS Study finds ALS costs Canada $628 million each year, with families carrying nearly 80 per cent of the burden, underscoring the need for urgent federal action.
TORONTO, ON, October 14, 2026 – The new national Burden of ALS Study, released today by the ALS Society of Canada (ALS Canada), found amyotrophic lateral sclerosis (ALS) isn’t just a devastating diagnosis but also carries an annual economic burden of $628.2 million annually across Canada, with 78 per cent of the costs absorbed directly by patients, caregivers, and their families. The findings reveal that families affected by ALS face an average annual burden of more than $123,000, driven primarily by lost income, caregiving responsibilities, home modifications, specialized equipment, and out-of-pocket expenses.
The report, the most comprehensive economic assessment of ALS conducted in Canada in more than a decade, points to a clear federal priority: a $50 million investment in ALS research to accelerate discoveries and help reduce the personal and economic costs of the disease over time.
By the numbers
Key findings from the report include:
- $628.2 million annual economic burden of ALS in Canada.
- $157,000 average annual cost per person living with ALS.
- $123,000 average annual cost borne by affected families.
- 78% of the total burden falls on patients and families.
- $112,000 in average annual lost household income linked to ALS.
- 89% of people living with ALS rely on an unpaid caregiver.
- Nearly half of caregivers provide more than 30 hours of care each week.
- 94% of employed caregivers report missing work because of caregiving responsibilities.
Beyond the financial costs, the report highlights the profound human impact of the disease. As ALS progresses, families face mounting caregiving demands, social isolation, declining mental health, loss of independence and the emotional reality of a disease that currently has no cure.
“Canadians are already worried about paying their bills, affording a home, and putting food on the table,” said Tammy Moore, ALS Canada Chief Executive Officer. “Now imagine learning that you have a terminal disease and that your family’s income could disappear almost overnight. That’s the reality facing thousands of Canadians living with ALS today.”
ALS, also known as Lou Gehrig’s disease, occurs when the brain is no longer able to communicate with the muscles of the body. Over time someone with ALS will face progressive paralysis as they lose the ability to walk, talk, eat, swallow, and eventually breathe.
The study found that lost income is the single largest cost driver associated with ALS, accounting for more than 70 per cent of the overall economic burden. More than half of people who stop working because of ALS do so within six months of diagnosis. At the same time, many caregivers reduce their hours, take leaves of absence, or leave the workforce altogether to care for loved ones.
“Life changes for families as soon as they receive the ALS diagnosis,” adds Ilayda Ulgenalp, ALS Canada Director of Advocacy and Stakeholder Relations. “They are forced to navigate the healthcare system, treatments, travel to specialized clinics, and retrofit their homes to accommodate for the mobility challenges their loved ones will eventually face.”
A call for action
While provinces like Ontario have made important investments in ALS care and support services, Canada lacks a sustained federal ALS research initiative at the scale needed to match the urgency of the disease. Without major national investment, ALS Canada says Canada risks falling behind countries moving faster to advance treatments, expand clinical trials, and build research capacity.
“Families are becoming the shock absorbers of a system that is not keeping pace with the realities of ALS,” says Moore. “No Canadian family should be forced to choose between caring for a loved one and keeping a roof over their head.”
ALS Canada is calling on the federal government to invest $50 million in ALS research and focus federal action on three priorities:
- Accelerate discoveries that can lead to earlier diagnosis, better treatments, slower disease progression and, ultimately, a cure.
- Expand clinical trial capacity so Canadians can participate in and benefit from emerging therapies.
- Strengthen Canada’s ALS research infrastructure so researchers and clinicians can move faster and compete globally.
“Investing in research is the most effective long-term strategy for reducing the burden of ALS”, says Dr. David Taylor, ALS Canada Chief Scientific Officer. “Every breakthrough treatment, every day of delayed disease progression, every innovation that helps people live independently longer reduces the enormous costs borne by families and the healthcare system.”
About the Study
The Burden of ALS Study is based on a national survey of 223 respondents, including people living with ALS and caregivers, focus groups, secondary research, and economic modelling. The study examines the economic and psychosocial burden of ALS across patients, caregivers, and the health and social care system and represents the most comprehensive assessment of the cost of ALS in Canada in more than a decade.
About ALS and the ALS Society of Canada
Amyotrophic lateral sclerosis (ALS) is an unrelenting and currently terminal disease. It progressively paralyzes people because the brain is no longer able to communicate with the muscles of the body that we are typically able to move at will. Over time, as the muscles of the body break down, someone living with ALS will lose the ability to walk, talk, eat, swallow, and eventually breathe. Nearly 4,000 Canadians live with ALS and approximately 1,000 Canadians are diagnosed each year. Four out of five people living with ALS will die within two to five years of their diagnosis.
The ALS Society of Canada is working to change what it means to live with ALS. Grounded in and informed by the Canadian ALS community, we respond to the urgent unmet need for life-changing treatments by investing in high-quality research that will fuel scientific discovery and by engaging industry, supporting increased clinical capacity, and advocating for equitable, affordable, and timely access to proven therapies.
Responding to the tremendous need for current and credible ALS knowledge, awareness, and education, we empower Canadians affected by ALS to navigate the current realities of ALS, be informed consumers of ALS information, and advocate effectively for change. In Ontario, we provide direct community services to help people navigate ALS.
Founded in 1977, we are a registered charity whose work is powered by generous donors who share our vision of a world free of ALS.
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For more information
ALS Society of Canada
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