This blog series is a place for the ALS community to learn about and stay updated on ALS Canada’s advocacy efforts as well as relevant developments within government. Please note that because ALS Canada advocates federally and provincially within Ontario, these updates will primarily feature updates from the federal and Ontario provincial levels of government.

Access to therapies

AMX0035 | Health Canada Priority Review Decision

  • On August 31, it was announced that Health Canada would begin reviewing a New Drug Submission (NDS) for the prospective ALS therapy AMX0035.
  • Health Canada did not grant the AMX0035 priority review status, meaning that the treatment will undergo a 300-day standard review compared to a 180-day priority review.
  • We believe any new innovative ALS therapy should be granted priority review status.
  • We urge Health Canada to reverse its decision and immediately grant AMX0035 priority review status – and set an important precedent for all future ALS therapies.
  • To learn how you can take action and call on Health Canada to revisit this decision, visit our AMX0035 priority review blog post.

The Time is Now | ALS Position Paper & e-Advocacy Campaign Update

  • ALS Canada’s The Time is Now e-advocacy campaign, aimed at highlighting two solutions to getting Health Canada approved therapies to Canadians living with ALS more quickly, continues to gain momentum.
  • Join the thousands of Canadians who support this campaign and send your letter today: www.als.ca/the-time-is-now.
  • As of September 30, over 6,700 people participated in the e-campaign, telling their elected officials to help ensure that these solutions are implemented. A provincial breakdown is as follows:
    • Alberta: 327
    • British Columbia: 347
    • Manitoba: 221
    • New Brunswick: 57
    • Newfoundland and Labrador: 22
    • Nova Scotia: 52
    • Ontario: 4,418
    • Quebec: 996
    • Saskatchewan: 83
    • Yukon: 1
  • To bring forward the position paper’s recommendations, the ALS advocacy team, joined by community advocate Steven Gallagher, met with several Ontario Ministers’ Offices and Members of Provincial Parliament (MPPs):
    • September 8: Office of the Minister of Health, Hon. Christine Elliott (Newmarket—Aurora)
    • September 8: MPP Will Bouma (Brantford—Brant), Parliamentary Assistant to the Minister of Finance
    • September 14: MPP John Fraser (Ottawa South)
    • September 16: Office of the Minister of Labour, Skills Development and Training, Hon. Monte McNaughton (Lambton—Kent—Middlesex)
  • At the meetings, we discussed “The Time is Now” position paper and the important need for the Province to make meaningful changes to the drug access pathway now so that people and families living with ALS can get timely access to future medications as soon as they are approved by Health Canada. We also raised specific solutions to improve home and community care as it relates to PSWs and equipment loan programs.

Federal Updates

2021 Federal Election

  • On September 20, Canadians voted to re-elect a Liberal minority government, with a Conservative official opposition. Full election results can be found at Elections Canada here.
  • You can view our election blog post, Knowing the issues that matter to the ALS Community: ALS Election Commitments, to learn more about parties’ commitments to address issues affecting the ALS community.
  • Key next steps for the federal government include the appointing of a new Cabinet, the swearing-in of MPs to Parliament, the Speech from the Throne, the first sitting of the new session and first confidence vote in the House of Commons, and the publication of Ministerial Mandate Letters.
  • ALS Canada will continue to monitor for these developments and will begin engaging with new and returning MPs in the coming weeks.

Federal Bereavement Leave Update

  • On September 29, a new labour law came into effect that increases the length and broadens the eligibility of bereavement leave entitlements for federal employees.
    • Federal employees are now entitled to 10 days of bereavement leave instead of five and employees who are on compassionate care leave at the time of the death of a loved one are now also eligible for bereavement leave.
  • For more details, visit the Government of Canada’s website here.

Provincial Updates (Ontario)

New Session of Parliament at the Ontario Legislature

  • On October 4, the Legislative Assembly of Ontario began its second session of the 42nd Parliament with the Honourable Elizabeth Dowdeswell, Lieutenant Governor of Ontario, delivering the Speech from the Throne at Queen’s Park.
  • This Speech from the Throne outlined the government’s agenda for the remaining months until the next provincial election, which is currently scheduled for June 2, 2021.

Note to readers: This blog is a source of information for the ALS community that provides an overview of advocacy efforts and current affairs for Canadians affected by ALS. While there are many topics presented in this blog update, they don’t represent ALS Canada’s official position on any particular issue, nor indicate a complete list of ALS Canada’s advocacy priorities. We’re also unable to share all details about certain engagements with industry stakeholders due to confidentiality reasons.

You can read past advocacy updates here.

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