MARKHAM, Ont. — The financial burden of ALS is costing Canadians hundreds of millions of dollars a year, with the leading national organization urging the federal government to invest $50 million in research over the next five years. The “Burden of ALS Study,” released Wednesday by ALS Canada, found the fatal degenerative disease costs $628.2 million annually across Canada with patients, caregivers and their families bearing an estimated 78 per cent of the cost. The study also reveals ALS is costing the average family $123,000 a year, primarily driven by factors including lost income, caregiving responsibilities, specialized equipment, home modifications and other out-of-pocket expenses. “ALS is a health-care crisis, but when we look at these numbers it’s also a financial crisis,” said ALS Canada CEO Tammy Moore. “People are making difficult choices about ‘what do I do about the equity in my home or my children’s education fund when the reality is I need home modifications to be able to live.’ These are choices people should not have to make here in Canada.” An estimated 4,000 Canadians are living with ALS and approximately 1,000 Canadians are diagnosed every year. The disease progressively paralyzes people to the point that they lose the ability to walk, talk, eat, and eventually breathe. There is currently no cure for ALS. About 80 per cent of people with ALS die within two to five years of being diagnosed, according to ALS Canada. ‘Like I’m living in a prison’ Eric Hauser was diagnosed with ALS in September 2026. The 64-year-old retired music teacher from Markham, Ont., said the disease has progressed rapidly and everyday tasks that many take for granted, like simply moving from room to room, are now a massive undertaking. “Now I can stand for about a minute thirty, two minutes max, but even that’s kind of going downhill,” Hauser said. “Now I find it difficult to brush my teeth, to hold a fork.” Hauser now spends most of his day in a power lift recliner, and a hospital bed was delivered in the last week. In order for him to move more freely and not be confined to the second floor, he is going to install an elevator, a lift to be able to move him in and out of bed better, along with a complete bathroom remodel to accommodate a wheelchair. “An elevator is no longer kind of cool, it becomes a necessity if I want to get off this floor,” he said. “And now I feel like I’m living in a prison. The price of escape is going to be over $100,000, $150,000 just to sort of have a certain dignity, you know?” ALS Canada provides some of the equipment and covers a portion of the costs but many are out-of-pocket expenses Hauser wasn’t banking on. “Just the fact that the horizon for our life together as a family, for all the retirement stuff I had hoped to do, that’s off the table. And now we’re talking about elevators and redoing the bathtubs.” “You realize very quickly the fundamental importance of your family, of your extended family, of your friends, of your colleagues, don’t take those things lightly,” Hauser said. “I used to be very independent, and now I’m realizing you need those things. You need a good partner, you need community. Otherwise, I don’t know how I would be here.” Key findings: Out-of-pocket expenses The study was based on a national survey of 223 respondents including those living with ALS, their caregivers, and focus groups. It was conducted to understand the financial and psychosocial impact of ALS across Canada. Nearly half of those surveyed for the study reported they stopped working within six months of their diagnosis. Out-of-pocket expenses include home modifications, specialized equipment and transportation needs that only grow as the disease progresses. The study found home modifications are among the largest expenses for people living with ALS, with the average amount spent by respondents approximately $25,000 with the largest single amount reported at $250,000. Others had to buy a home more suited to their needs. As the disease progresses, the need for specialized equipment, including power wheelchairs, special beds, feeding and breathing equipment, lifters and ramps, also increases. “Some families reported purchasing ramps, mobility devices, and bathroom equipment to meet urgent needs, while others delayed large purchases because they could not afford them or were uncertain how quickly their condition would change,” the study states. The study found respondents spent an average of $7,000 on new equipment in the last year. Cost of caregiving Ninety-two per cent of people living with ALS depend on unpaid caregivers. “The disease reshapes how individuals and families experience daily life, make decisions, think about their future and engage with their communities,” the study states. Many caregivers compared the time commitment to a full-time job with nearly half of the caregiver respondents reporting 30 hours or more of ALS-related care in a week. Ninety-four per cent of caregivers also reported missing work because of caregiving responsibilities. Loss of independence, identity The study also looked at the immense human impact of the disease. Those living with ALS reported the loss of independence and identity as one of the most significant effects. They also reported feeling isolated as it becomes increasingly difficult for them and their family to participate in certain social activities given physical limitations, communication challenges and accessibility. “Suddenly there are people you thought were friends who have just cast aside years of friendship over a wheelchair. Like the person in it is an inconvenience and not a person that they know,” one respondent told the study. “If something needed fixing or moving, or if someone needed advice, they called me. ALS took that away. Losing my independence has been hard, but I’m also losing my sense of who I once was,” said another. Urgent request for investment ALS Canada is calling on the federal government to invest $50 million in research over five years and warns if it doesn’t, Canada will continue to fall behind other countries like the U.S., U.K. and Australia. “We have the researchers and the clinicians that are here, we need to make the investment to be able to put Canada on the map, to make sure Canadians have access to both research as well as clinical trials,” Moore said. The federal government has not directly said whether it will provide the requested $50 million. While some provinces like Ontario have made investments in care and support services, without a major national investment, Canada risks falling behind when it comes to advancing treatments, expanding clinical trials and research, Moore said.
