July 26, 2021 | Ottawa, Ontario | Health Canada           

Too many Canadians are struggling to access the drugs they need, especially if they have a rare condition. Work continues on the national strategy to support Canadians who rely on these drugs. Today, we are releasing the What We Heard Report from the public online engagement for the National Strategy for Drugs for Rare Diseases, which showcases Canadians’ feedback on how we can ensure rare disease patients get better access to the effective drugs they need.

From January 27 to March 26, 2021, Health Canada undertook public and stakeholder engagement to seek ideas and views on what a national strategy could look like. Canadians were invited to participate by completing an online questionnaire, sending a written submission by email or mail, or attending one of five virtual public town halls. Virtual meetings were also organized with stakeholders.

The engagement garnered diverse perspectives from over 650 individuals and organizations, including patients with lived experience, family members, and caregivers. Throughout the engagement, participants overwhelmingly felt a national approach was the most important element for a strategy and should be guided by key principles and values such as transparency, accountability, flexibility and being patient-centred. The report, which is available on our website, reflects these key themes and feedback.

Health Canada will use the What We Heard Report to closely review the ideas and suggestions gathered from the consultations to inform the development of the national strategy. The federal government will continue working closely with provinces and territories, health system partners, Indigenous partners and other stakeholders to build a strategy that works for all Canadians. Health Canada will conduct a series of in-depth follow-up discussions with partners and stakeholders on various elements of the What We Heard Report over the summer, and a public consultation will take place this fall to inform a comprehensive model for the national strategy. Our website will be updated with more information when available.

With the support of all those involved, the Government of Canada will work towards the launch of a national strategy in 2022.