CANADA — A study commissioned by ALS Canada estimates that the disease imposed an annual economic burden of $628.2 million in Canada in 2025, with patients, caregivers and families bearing about 78 per cent of the total.

The organization released its findings on October 14. The estimate includes lost earnings and unpaid care as well as spending on services and equipment; it should not be read as a total of medical bills paid by households.

Lost income dominates the estimate

The model puts average annual costs at roughly $157,000 per person living with ALS, including approximately $123,000 borne by families. Lost income accounts for $449.3 million nationally, more than 70 per cent of the estimated burden.

ALS Canada is using the findings to seek a $50-million federal investment in ALS research. That is an advocacy request, not an announced government funding award.

What the research can establish

The report combines an online survey, focus groups, secondary research and economic modelling. Its survey had 223 respondents across eight provinces: 127 responding from the perspective of someone with ALS and 96 caregivers. Seventy-seven per cent were in Ontario.

Those participants are not a census of everyone affected by ALS. The report does not support comparisons between provincial disease burdens, and its national totals depend on modelling assumptions.

The researchers describe the costs as conservative estimates. What a household spends can reflect what it can afford rather than everything it needs; average figures also conceal substantial differences between families.

The study examines the financial consequences of living with ALS and supporting someone who has it. Its findings are not individual care or financial advice.

Sources: ALS Canada release, October 14, 2026; Burden of ALS study overview; Cost of ALS in Canada report: methods and limitations.

Lead image: Flag of Canada via Wikimedia Commons, public domain. Geographic illustration, not a photograph of a patient or caregiver.