ALS Canada Supports the Government of Canada’s Decision to Extend the Compassionate Care Benefit to 26 weeks

MARKHAM, April 21, 2015 – ALS Canada is pleased the Government of Canada has decided to  extend the Compassionate Care Benefit (CCB) from 6 to 26 weeks – a benefit that will directly provide much needed financial assistance to Canadian families caring for a loved one with the terminal disease, ALS or amyotrophic lateral sclerosis.

This commitment by the Government of Canada represents significant progress and will make a substantial impact on Canadians who are at their most vulnerable financially and emotionally. The increase means up to $13,624 for caregivers taking care of a loved one with ALS.  Average costs for a working Canadian family dealing with an ALS diagnosis are $150,000 – $250,000 during the short life span of 2 to 5 years, due to the needs associated with the debilitating physical effects of this neurodegenerative disease.

ALS Canada has been advocating since 2013 for an extension of the CCB for families living with ALS from 6 to 35 weeks and eligibility upon diagnosis. While ALS Canada supports an extension to 26 weeks as a positive step forward, better support for ALS families is urgently needed.

“We thank the federal government for their commitment to the extension of the CCB . The increase of the CCB to 26 weeks from its original 6 weeks means our voices are being heard and we are making progress,” said Tammy Moore, CEO ALS Canada. “However, we will continue working with Members of Parliament and the Government of Canada to improve access to the CCB to ensure this benefit adequately supports caregivers of Canadians living with ALS.  These changes are imperative given the significant financial strain that ALS causes for both patients and families and the hardships associated with an ALS diagnosis.”

ALS is a disease that is nicknamed the ‘bankruptcy disease’ because of the  emotional, physical and financial toll as the disease progressively paralyzes the body until the individual affected with ALS eventually succumbs to respiratory failure and dies. With every progression of the disease, the costs to maintain an appropriate level of care and quality of life are significantly financially detrimental to an ALS family and an adequate and appropriate level of compassionate care benefits should be provided.

About ALS

ALS, amyotrophic lateral sclerosis is a neurodegenerative disease where the cells in the body that control movement die. The “living wires” which connect a person’s brain to their muscles degenerate, leading to a loss of mobility and eventual paralysis, changes or complete loss of speech and eventually the ability to breathe. ALS is a terminal disease that has no cure, and no effective treatment. Approx. 2,500-3,000 Canadians are living with ALS.  It is estimated 1,000 Canadians will die annually of ALS and 1,000 will be newly diagnosed each year. The average lifespan is two to five years.

About ALS Canada

The ALS Society of Canada was founded in 1977 and is the only national registered charity dedicated to ALS. ALSCanada is responsible for the ALS Canada Research Program – funding peer reviewed research grants and fostering collaboration amongst Canadian researchers, helping to nurture new ideas and build capacity. ALS Canada has a role in Ontario, similar to that of the Provincial ALS Societies, providing services and support for people living with ALS within our provinces. ALS Canada advocates federally in partnership with the Provincial Societies on behalf of people and their families for better government support and access to federal research funding programs. Follow ALS Canada @ALSCanada and for more information visit