Current priorities

Advocating for Access to Therapies: The ALS Society of Canada presents to the House of Commons Standing Committee on Health

Earlier this fall, Tammy Moore, CEO, ALS Society of Canada, presented to the House of Commons’ Standing Committee on Health (HESA) on the challenges faced by Canadians living with ALS as it relates to accessing innovative and promising therapies before and after market approval.

The presentation was an opportunity to bring forward the experiences of our community and the realities of living with ALS in order to help the federal government understand how inconsistencies and gaps in the healthcare system are directly affecting Canadians living with ALS.

We will continue to work in partnership with ALS Societies across Canada to reinforce the needs of the ALS community and advocate for timely and equitable access to emerging ALS treatments for all Canadians.

You can read the remarks here.

Check against delivery.

Federal funding to make ALS treatable, not terminal

Since the ALS Ice Bucket Challenge became a social media phenomenon in 2014, nearly $20 million has been invested in Canadian ALS research because of the money raised through the challenge and matched by Brain Canada, with financial support from Health Canada. This influx of funding has allowed ALS researchers to make significant steps towards discovering effective treatments for ALS.

However, it is anticipated that in 2018 Canada’s ALS research effort will return to its traditional funding levels of $1.5 to $2 million per year. We are at risk of losing research momentum at a time when ALS research holds more promise than ever before. There are no significant sources of Canadian ALS research funding other than ALS Canada, resulting in a need for directed support from other sources like the federal government.

We have called on the federal government to invest $25 million in ALS research over a five-year period to continue the research momentum triggered by the Ice Bucket Challenge. We have also called for the federal government to make a one-time commitment of $10 million in support of Canada’s contribution to Project MinE, an international research partnership that will map the full DNA profiles of 15,000 people with ALS and 7,500 control subjects, establishing a global resource of human data that will enable scientists worldwide to better target the disease by understanding the genetic signature that leads someone to develop ALS.

We believe that Canada is well-positioned to play a leadership role in ALS research and making a meaningful global contribution that could help to make ALS a treatable, not terminal disease.

Better care for people living with ALS in Ontario

ALS Canada has a role in Ontario similar to that of provincial ALS Societies, providing services and support for people living within our provinces and helping to fill the gaps between the healthcare system and the needs of people living with ALS.

Our advocacy efforts in Ontario align with the Ministry of Health and Long-Term Care’s Patients First: Action Plan for Health Care and focus on ensuring access to care for people living with ALS, including:

  • Access to non-invasive ventilation in long-term care and other settings
  • Consistent access to home and community care services, in particular personal support workers (PSWs), throughout Community Care Access Centres across the province
  • Flexible access to the direct funding program wherein caregivers could be the employer rather than the client

Palliative care

ALS Canada is taking an active role in the national conversation on palliative care including work on the national Palliative Care Matters steering committee. To date, this initiative has resulted in a national consensus statement and 20 specific recommendations to the government. The third and final phase of the initiative will be a report in 2017 from the Conference Board of Canada that reviews the Consensus Statement and outlines how the recommendations can be implemented. More information is available on the Palliative Care Matters website.

Genetic fairness: preventing genetic discrimination

Though the precise cause or causes of ALS are unknown, research is increasingly suggesting that genetics may play a big role in the development of the disease regardless of whether it is passed from a parent to his or her child, which happens in approximately 5 to 10% of ALS cases.

As a member of the Canadian Coalition for Genetic Fairness (CCGF), ALS Canada is actively lobbying government to pass Bill S-201, which seeks to prohibit and prevent genetic discrimination. More information is available on the CCGF website.