Public Policy of ALS in Canada

The division of responsibilities between federal and provincial governments shapes the care of people with ALS in Canada. Federal policies affect people with ALS through approval of new therapies, research funding, caregiver benefits and legislation including the unsuccessful “right-to-try” bill and the successfully passed Medical Assistance in Dying (MAiD) law. Provinces, responsible for healthcare delivery, approve different services and therapies in their formularies; access to treatments and services therefore vary. ALS-specific care is primarily provided by multidisciplinary clinics in urban tertiary care hospitals. Primary care providers support ALS patients throughout their course including end-of-life care. Palliative care is also available. Since 2016, MAiD has been determined to be a part of healthcare. People with ALS are prominent in media coverage of MAiD. Across Canada, ALS Canada and its federated provincial partners play an important role in advocacy, research funding and engagement with the Canadian public.