Government programs for ALS funding and essential equipment fail to address urgent, complex needs — leaving charities to fill critical gaps in care.
A diagnosis of amyotrophic lateral sclerosis (ALS) is devastating for the person receiving it and their loved ones. People struggle to navigate their journey, overwhelmed by a terminal diagnosis.
ALS progressively paralyzes people, as their brain can no longer communicate with their muscles. The reality is a swift decline in the ability to move, talk, eat, swallow, and eventually breathe. With no cure and few treatment options, 80 per cent of people with ALS die within two to five years.
For the 1,400 Ontarians living with ALS and their families, a referral to the ALS Society of Canada’s (ALS Canada) Community Services Program is a crucial first step. ALS Canada Community Leads throughout the province offer in-person support and guidance to help navigate the complexities of the disease and facilitate connections to health professionals, community resources, and equipment to help maintain independence, safety, and quality of life.
Securing access to critical services
As the disease rapidly progresses, a succession of mobility and communication devices become essential. While other provincial governments — British Columbia, Nova Scotia, and Quebec — fully fund these critical supports, Ontario does not. Due to its limited scope, the Ontario Assistive Devices Program (ADP) leaves people living with ALS at increased risk of injury and additional strain on caregivers. Through the generosity of donors, ALS Canada’s Equipment Program has been there to provide equipment cost-free to individuals for as long as they need it. But is this just widening the gap rather than finding permanent solutions?
Having access to equipment helps maintain my dignity and allows me to stay at home, which ultimately saves the province money.
“The support required for people living with ALS is substantial and increases over time with the progression of the disease, which can lead to significant emotional and financial challenges,” says Tammy Moore, CEO of ALS Canada. “We’re grateful to our donors, whose generosity allows us to provide community support and equipment, but as demand increases for services, the Ontario government must step in to ensure that access to these critical services, which augment the health care system and ultimately save health care dollars, can continue.”
Advocating for change
In February 2024, people affected by ALS, health care professionals, and ALS Canada rallied at the Ontario Legislature to advocate for $6.6 million in funding to support the Ontario Provincial ALS Program — funding for clinics, equipment, and community services programs.
Despite a clear solution to save health care dollars, Ontario’s 2024 Budget did not include the much-needed funding, leaving families and advocates feeling confused and frustrated.
“Having access to equipment helps maintain my dignity and allows me to stay at home, which ultimately saves the province money,” says Mike Cels, who was diagnosed with ALS in 2017. “I cannot stress enough how valuable the care has been for me and my family. Relying solely on donor funding puts this important program at risk.”
ALS Canada remains committed to supporting the ALS community and will continue efforts to secure the necessary funding from the Ontario government to help reduce health care costs and improve the lives of people affected by ALS.
Unite in ALS by taking action to help people affected by the disease. Learn more at als.ca.
