ALS Canada Advocacy Update – June 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

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

• In consultation with the broader Canadian ALS community – ALS Canada has just released a Position Paper that offers two solutions to getting Health Canada approved therapies to Canadians living with ALS in a timeframe that more accurately reflects the urgent needs of this community.
• We also launched an e-advocacy campaign, enabling people to send a pre-written letter to elected officials, telling them to help to ensure that these solutions are implemented.
• Send your letter now: www.als.ca/the-time-is-now

Amylyx AMX0035 Update

• On June 14, Amylyx announced that it has filed a New Drug Submission (NDS) to Health Canada for its ALS therapy AMX0035.
• While this announcement does not yet mean Health Canada’s review of the drug has begun, Amylyx’s decision to pursue regulatory approval of AMX0035 is an important step forward. The next step would be for Health Canada to accept the company’s NDS, which would trigger a regulatory review.

Blog post: How new drugs become approved and accessible to Canadians

• With the news that Amylyx intends to apply to Health Canada for approval of their AMX0035 therapy for ALS, we’ve refreshed our blog post explaining how new drugs become accessible in Canada.

PMPRB Reforms

• With the revised Patented Medicine Prices Review Board (PMPRB) guidelines slated to come into effect next month, ALS Canada has joined other health charities and patient organizations in continuing to speak against the reforms: we have urged Health Minister Patty Hajdu to reconsider the new guidelines and, following news that the PMPRB has developed a communication strategy focused on discrediting patient groups, we have asked Prime Minister Trudeau to delay the guidelines’ implementation.
• On June 4, the Members of the House of Commons Standing Committee on Health (HESA) met to continue their study of the new Patented Medicine Prices Review Board (PMPRB) guidelines.

Federal updates

ALS Caucus Meeting

• On May 17, ALS Canada participated in the multi-party Parliamentary ALS Caucus meeting as an invited guest to discuss access to ALS therapies.
• Alongside ALS advocates and community members Norman MacIsaac, Mike Cels and Carmen Cels, we discussed the critical need for government to play role in reducing the time it takes for new therapies to be made available to Canadians living with ALS once they’re proven safe and effective.
• On June 11, the multi-party Parliamentary ALS Caucus sent an open letter to federal Health Minister Patty Hajdu, calling for the Government of Canada to reduce the Health Canada approval time for new ALS drugs from six months to three months and to work with the provinces and territories to accelerate the reimbursement timeline for new ALS therapies.

Provincial updates (Ontario)

• COVID-19 Vaccine Advocacy
  • On June 4, as part of a coalition of health charities in Ontario, ALS Canada asked that vulnerable Ontarians and their caregivers be prioritized for a second doses of the vaccines, along with other high-risk populations.

  New legislation to regulate Ontario PSWs

  • On June 3, the Advancing Oversight and Planning in Ontario’s Health System Act, 2021 came into effect. This Act creates new measures to regulate education and training standards for personal support workers (PSWs), enhancing their capacity to provide care services to the province’s most vulnerable people.
  • We are glad to see this Act come into effect, as we have been advocating for changes to the PSW sector for many years so that Ontarians living with ALS can receive improved home and community care.

  PSW Temporary Wage Increase Extension

  • On June 11, the government announced another extension to the temporary wage increase for personal support workers (PSWs). This will include approx. 150,000 PSWs working in home and community care, long-term care, public hospitals, and social services settings.
  • Eligible PSWs will continue to receive the $3/hour wage increase ($2/hour increase for PSWs working in hospitals) until August 23, 2021.

  Ontario Legislature Adjournment

  • On June 3, the Ontario Legislature adjourned for the summer months. It is scheduled to resume sitting on September 13.

ALS Awareness Month

• On June 2 – Major League Baseball’s inaugural Lou Gehrig Day – ALS Caucus Co-Chairs MPs Francis Drouin, Heather McPherson, and Marie-Hélène Gaudreau delivered Members Statements in the House of Commons in recognition of ALS Awareness Month.
• At the Ontario Legislature, Robin Martin, Parliamentary Assistant to the Minister of Health, and Ms. Lucille Collard, MPP for Ottawa—Vanier, made Members Statements acknowledging ALS Awareness Month.
• Throughout the month of June, Ontario-based MPs and MPPs are voicing their support for people affected by ALS through videos that have been published on ALS Canada’s social media pages.

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.