ALS Canada Advocacy Update – January-March 2022

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 | CADTH 

• In late October, the Canadian Agency for Drugs and Technology in Health (CADTH) posted a call for patient input on AMX0035.  
• ALS Canada invited the community to contribute to the submission by sharing their experiences with ALS through a survey. More than 600 Canadians participated in the survey, bringing forward their perspectives.  
• The patient input submission will help inform recommendations about public coverage of the therapy once approved.     
• Read our submission  

 Oral Edaravone | CADTH 

• In early February, Canadian Agency for Drugs and Technology in Health (CADTH) has posted a call for patient and clinician input on oral edaravone.  
• ALS Canada prepared a submission that reflects the diversity of perspectives and experiences of people living with ALS from across the country. 
• Input from the community continues to help us ensure that issues of importance to the ALS community are considered by decision-makers at CADTH, who ultimately recommend whether public drug plans should cover the drug if it is approved by Health Canada. 

• Read our patient submission here. 
• The ALS Clinical community also provided a written submission 

Edaravone | Personal Importation 

• After continued conversations, Health Canada has confirmed that people living with ALS can continue to access edaravone through personal importation beyond April 1, 2022. An extension has been granted until October 1, 2022.  

Proposed framework for a potential Pan-Canadian Formulary | CADTH 

• As a member of the Health Charities Coalition of Canada (HCCC), we responded to the Canadian Agency for Drugs and Technologies in Health (CADTH) ‘s consultation on a proposed framework for a potential pan-Canadian formulary. 
• Our response brought forward the perspective of health charities across Canada and highlighted the importance of making innovative medicines accessible to Canadians living with ALS in an affordable, timely and equitable manner.  

PMPRB Regulations Delayed 

• The implementation of the Patented Medicines Prices Review Board (PMRPB) regulations has been delayed until July 1, 2022.  

• We thank the ALS community for raising their voices. Your advocacy efforts helped government understand why further consultation is needed to understand the impact of the reforms on drug access in Canada. 
• Read more about the decision.
   

Federal Updates

Government Meetings 

• March 23 – Joined by ALS community advocates Mike and Carmen Cels, Tammy Moore, CEO and Lauren Poplak, Stakeholder Relations Manager, met with Sandenga Yeba (Senior Policy Advisor to the Office of the Minister of Health) to discuss the critical role the federal government plays in enabling the solutions outlined in our position paper, The Time Is Now. 

• March 24 –Tammy Moore, CEO, met with Linsey Hollet (Director General at Health Canada) and Supriya Sharma (Chief Medical Advisor at Health Canada) to touch base on the personal importation of edaravone in Canada, resulting in an extension. 

Liberal – NDP Agreement 

• On March 22, Prime Minister Justin Trudeau announced that a multi-year agreement was reached by Liberal Party and the New Democratic Party (NDP). 
• The parties agreed to prioritize certain policy areas and legislation, such as Pharmacare and Safe Long-Term Care Act, as part of the agreement. 
• ALS Canada was an active participant in the consultation on the Implementation of National Pharmacare and Health Canada’s consultation on the development of a National Strategy for Drugs for Rare Diseases.  

• ALS Canada will continue to explore the details of this agreement as we want to ensure any solutions put forward through this agreement respond to the needs of the ALS community. 

Provincial Updates

Virtual Advocacy Week 

• In early March, members of the ALS community joined ALS Canada for advocacy training and a week of meetings with Ministers and Members of Provincial Parliament (MPPs) in Ontario as part of ALS Canada’s first-ever Ontario Virtual Advocacy Week, taking place March 7 – 11.  

• From people living with ALS and their caregivers and family members to volunteers and staff, our delegation of 27 people discussed the solutions outlined in our position paper, The Time Is Now, and made the following asks of the Ontario government: 

• Upon Health Canada’s approval and the development of applicable clinical criteria/prescribing guidelines, all ALS treatments are publicly funded on an interim basis by public drug plans.  
• All ALS treatments are approved, reviewed for public reimbursement, and publicly funded through a single condensed timeframe applicable to all jurisdictions in Canada.  

• Our meetings were positive, with all MPPs expressing a shared concern for the challenges faced by the ALS community and an understanding of the urgent need for expedited and equitable access to ALS therapies.  
• In response to the meetings, the MPPs committed to bringing forward the need for health policy change that would see therapies in the hands of people living with ALS in a timeframe that more accurately reflects the reality of the disease with the Minister of Health and in the legislative assembly.  

• This has taken the form of letters to the Minister and in-person conversations.  

• ALS Canada continues to engage with Ontario MPPs in the lead-up to the upcoming election. 
  Throughout the week, we met with: 
  Minister of Health, Hon. Christine Elliott (Newmarket-Aurora)
  Solicitor General, Hon. Sylvia Jones (Dufferin-Caledon)
  Speaker of the House, Hon. Ted Arnott (Wellington-Halton Hills)
  Office of the Minister of Finance, Hon. Peter Bethlenfalvy (Pickering – Uxbridge)
  Minister of Energy, Hon. Todd Smith (Bay of Quinte)
  MPP Aris Babikian (Scarborough—Agincourt)
  MPP Stephen Blais (Orléans)
  MPP Will Bouma (Brantford-Brant)
  MPP Stephen Crawford (Oakville)
  MPP Rudy Cuzzetto (Mississauga—Lakeshore)
  MPP John Fraser (Ottawa South)
  MPP Jennifer French (Oshawa)
  MPP France Gélinas (Nickel Belt) – Health Critic
  MPP Joel Harden (Ottawa Centre)
  MPP Natalia Kusendova (Mississauga Centre)
  MPP Michael Mantha (Algoma – Manitoulin)
  MPP Peggy Sattler (London West)
  MPP Monique Taylor (Hamilton Mountain)
  MPP Jamie West (Sudbury)  

 2022 Ontario Pre-Budget Consultation 

• We participated in the 2022 Ontario Pre-Budget Consultations. We are calling on the Ontario government to implement the immediate and long-term drug access solutions outlined in our position paper, The Time is Now. 
• Government has a critical role in eliminating the barriers preventing Ontarians living with ALS from having timely, fair and affordable access to the drugs they need.  
• Read our Ontario 2022 .
   

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.