Ontario commits CA$13 million to address ALS community needs
Funding will help support mission of new Ontario Provincial ALS Program
The government of Ontario has committed CA$13 million (around $9.36 million) over three years to provide critical and comprehensive care to people with amyotrophic lateral sclerosis (ALS) who live in the Canadian province.
The funding, which was announced in Ontario’s 2024 Fall Economic Statement, will help support the new Ontario Provincial ALS Program meet the needs of the roughly 1,400 residents of Ontario living with ALS. The program will support patient care at five regional multidisciplinary ALS clinics, fund the Society of Canada’s Equipment and Community Services Program, and expand care services in the northern and rural regions of the province, which are largely underserved. The goal is to offer ALS patients greater access to specialized care and support services that preserve their independence and quality of life, while reducing hospitalizations and emergency visits.
“This transformative investment … will help ensure people with ALS have access to multidisciplinary care, essential community services, and the assistive devices and mobility equipment they need when they need it; it is recognition the ALS community has long sought,” Tammy Moore, CEO of ALS Society of Canada, said in a press release from the organization.
ALS is a progressive neurodegenerative disease that disrupts the brain’s ability to communicate with muscles in the body. This causes gradually worsening muscle weakness, with the ability to walk, speak, eat, and even breathe independently progressively affected over time.
Managing ALS requires significant medical and financial resources, with patients needing multiple medications, frequent visits to neurologists, rehabilitation specialists, and other experts, along with access to mobility aids and communication devices.
But ALS clinics in Ontario frequently fail to meet the best practice recommendations for managing ALS due to lack of funding, which delays ALS care and results in unnecessary visits to the emergency department and costly hospital admissions.
The award seeks to address that, providing funding to help exiting ALS multidisciplinary clinics standardize and improve existing care models to meet the expected standards. The investment will also support ALS Canada’s Community Leads, which helps patients navigate healthcare systems, provides information and resources about ALS, and offers services to help with the unique needs of the ALS community.
The organization’s Equipment Program, which depends on donations, will also have sustained government financial support. The program loans mobility aids and medical equipment that can be difficult to obtain via the province’s medical equipment programs at no cost and for as long as necessary.
Expanding services for ALS community
The award is also intended to help the program add new clinic services in northern Ontario, an area with limited ALS resources, which leaves patients having to travel long distances to access care in the south, where most of the provinces ALS clinics are located.
The Provincial ALS Program hopes to establish a secretariat to oversee and coordinate the program and ensure that patients have access to care and services. The secretariat would explore the feasibility of opening a sixth clinic and other options for improving patient care.
“As someone living with ALS, this funding announcement brings a profound sense of relief and hope. Knowing that the Ontario government has responded to our needs is a powerful reminder that our voices are being heard, and it is an important step toward improving the lives of those affected by ALS across the province,” said Steven Gallagher, an ALS patient diagnosed in 2019.
ALS Canada, partnering with the five ALS Clinics in Ontario and the Sunnybrook Health Sciences Centre, has advocated for this funding since 2023 to address gaps in accessible and timely care.
The Provincial ALS Program hopes to establish a secretariat to oversee and coordinate the program and ensure that patients have access to care and services.
“We are so pleased that the Ontario government has recognized and acted on the urgent needs of families affected by ALS in Ontario,” said Mike Cels, who was diagnosed with ALS in 2017. “This support will have an immediate and tangible impact on newly diagnosed patients as well as those of us who are further along on our journey. Every solution that eases the challenges of managing life with ALS is significant to us.”
“Next to the discovery of novel therapeutics, this represents the most impactful advancement in ALS care in the province,” said Lorne Zinman, director of the Sunnybrook ALS Clinic. “The Ontario ALS Program will set a new standard for comprehensive and coordinated care to optimally support all patients and family members with this devastating disease.”
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