Together we are stronger: The ALS community takes to Ottawa

In early March, members of the ALS community joined ALS Canada in Ottawa for two days of advocacy training and meetings with politicians and other government officials. From people living with ALS  and their caregivers and family members to researchers, clinicians and volunteers, our delegation of 35 people made the following asks of the federal government: make substantial changes to the drug access pathway that will enable equitable, timely and affordable access to ALS therapies; and provide funding for dedicated ALS research to contribute to the development of those therapies. More specifically:

• Ensure Patented Medicines Prices Review Board (PMPRB) reforms don’t impact patient access.
• Follow through on drug access commitments, including expediting the creation of the Canadian Drug Agency so that the timeline for drug approvals and reimbursement decisions is shortened.
• Include people with lived experience in the decision-making process.
• Implement the House of Commons Standing Committee on Health (HESA) recommendations on open-label extensions.
• Fund dedicated ALS research by supporting CAPTURE ALS, a Canadian-led open science platform of comprehensive biological data from 1,000 Canadians living with ALS that will enable the study of why ALS progresses differently in people.

Our meetings were positive, with many government officials expressing a shared concern for the challenges faced by the ALS community and a willingness to take two specific actions: joining the all-party ALS Caucus and writing a letter to the Minister of Health in support of the asks. Thanks to all who took part in the day for your commitment, time and courage and to the MPs, Senators and staff who met with us.

What you can do: 

While the advocacy day meetings helped to kickstart discussions with government following the 2019 federal election, continued outreach and engagement will be essential. We have identified a number of follow-up activities that we will look to begin implementing in the coming weeks once opportunities for engagement are more available. Maintaining our momentum will be important, but must be balanced with the priority response being given to COVID-19 to ensure that our outreach is as effective as possible.

We will continue to provide updates on this blog about ways to advocate for substantial changes to Canada’s drug access pathway and dedicated ALS research funding. Also – keep an eye on our social channels for updates and information. Together we are stronger, and your actions can make a difference.

More Information

In addition to the links provided throughout the above article, these additional information resources provide more background and context about the asks:

• Webinar: How to get involved in advocacy for access to ALS therapies
• Blog post: How new drugs become approved and available to Canadians
• Letter: ALS Canada’s response to the 2020 PMPRB public consultations
• Federal Budget 2019: Moving Forward on Implementing National Pharmacare

While on Parliament Hill, we had more than 25 meetings with MPs, Senators and their staff, including:

• MP Darren Fisher, Parliamentary Secretary to Health
• MP Ron McKinnon, Chair of the House of Commons Health Committee
• MP Matt Jeneroux, Vice-Chair of the House of Commons Health Committee
• The office of MP Don Davies, NDP Health Critic
• MP Francis Drouin, Chair of the ALS Caucus