ALS Canada Advocacy Update – August 2021

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

PMPRB Regulations Delayed

• On June 29, the implementation of the Patented Medicine Prices Review Board (PMPRB)’s new regulations were delayed until January 1, 2022.
• Further, on July 15, the PMPRB announced another public consultation on three new amendments to the regulations with an August 31 deadline.
• ALS Canada is reviewing the proposed amendments and will be making a submission.

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, is gaining tremendous momentum.
• As of August 18, 6,177 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: 236 (English) 1 (French)
    • British Columbia: 323 (English only)
  • Manitoba: 204 (English) 1 (French)
  • New Brunswick: 33 (English) 20 (French)
  • Newfoundland and Labrador: 19 (English only)
  • Nova Scotia: 41 (English only)
  • Ontario: 4,097 (English) 84 (French)
  • Quebec: 164 (English) 622 (French)
  • Saskatchewan: 80 (English only)
  • Yukon: 1 (English only)
• Join the thousands of Canadians who support this campaign and send your letter today: www.als.ca/the-time-is-now.

Meeting with the pCPA

• On August 16, ALS Canada joined a meeting organized by ALS community advocate Norman MacIsaac with the pan-Canadian Pharmaceutical Alliance (pCPA).
• At the meeting we brought forward the Position Paper The Time is Now and raised solutions that will accelerate the reimbursement process for Health Canada-approved ALS treatments.
• This meeting is a starting place for ongoing discussions with the pCPA about the need for faster reimbursement times for ALS therapies coming down the pipeline. These conversations will in turn support timely and affordable access for a community that doesn’t have time to wait.

Federal updates

2021 Federal Election

• On August 15, on the advice of the Prime Minister, Her Excellency The Right Honourable Mary Simon, Governor General of Canada, dissolved Parliament and drew up writs for Canada’s 338 ridings – kicking off the start to the 2021 federal election campaign. The federal election date is September 20, 2021.
• During the campaign period, ALS Canada will be monitoring parties’ policy platforms for commitments that will improve the lives of Canadians living with ALS and will be reaching out to each major party asking for their response on specific issues of relevance to the ALS community and posting the responses on our blog.

ALS Canada Pre-Budget Submission

• On August 6, ALS Canada submitted a written brief to the House of Commons Standing Committee on Finance as part of their annual pre-budget consultation.
• Our brief recommended that, the Government of Canada invest $35 million over five years to expand CAPTURE ALS from a pilot initiative to a world-leading, self-sustainable Open Science platform.
• CAPTURE ALS will enable Canadian researchers to study why people experience ALS symptoms and progression so differently. This essential knowledge will help identify treatment targets, strengthen global clinical trials and develop Canadian infrastructure to attract private sector medical R&D investment.
• The federal budget is typically tabled in March of each year.

Federal Bereavement Leave Update

• On June 29, Bill C-220 received Royal Assent which made An Act to amend the Canada Labour Code (bereavement leave) become law.
• This law increases the amount of bereavement days that federally regulated employees under the Canada Labour Code receive – these employees will now be entitled to 10 days instead of five.
• The law also expands eligibility for the bereavement leave to include federally regulated employees who, at the time a family member dies, are on compassionate care leave or leave related to critical illness in respect of the deceased person.
• The law does not come into effect until September 29, 2021 and updated eligibility information, with specific details for individuals interested in applying, has yet to be published.

Provincial updates (Ontario)

• Meeting with MPP Robin Martin
  • On August 4, ALS Canada CEO Tammy Moore, Public Affairs Manager Lauren Poplak, Kim Barry, Director of Community Services, and community members Scott and Martha Williams met with MPP Robin Martin, Parliamentary Assistant to the Minister of Health, to discuss challenges facing Ontarians living with ALS.
  • At the meeting we shared our specific solutions that will make meaningful differences in the lives of people living with ALS – especially as it relates to home and community care and access to therapies.

  Provincial Cabinet Shuffle

  • On June 18, Premier Doug Ford announced changes to the Executive Council of Ontario.
  • Relevant changes to the ALS community include:
    • Rod Phillips, MPP for Ajax, became Minister of Long-Term Care.
    • Dr. Merrilee Fullerton, MPP for Kanata-Carleton, became Minister of Children, Community and Social Services.
  • ALS Canada has been in touch with the new pertinent members of Cabinet to request meetings and raise the urgent needs of Ontario’s ALS community.

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.