National Strategy for Drugs for Rare Diseases Online Engagement - Closed consultation

From Health Canada

To help Canadians with rare diseases access the drugs they need, Budget 2019 proposed to invest up to $1 billion over two years, starting in 2022-23, with up to $500 million per year ongoing. As reaffirmed in the 2020 Fall Economic Statement and Speech from the Throne, this includes working with willing provinces, territories and stakeholders to establish a national strategy for drugs for rare diseases.

As Canada considers how best to create a national strategy on drugs for rare diseases, it is important that Canadians - especially patients, their families and their caregivers - have a voice in helping to shape it. We invited Canadians to share their ideas and views on what a national strategy could look like. This feedback is now helping to inform the design of the strategy and ensure it helps patients get better access to the effective drugs they need.

How to participate

We invited all Canadians to read the discussion paper, which describes key considerations and questions for developing a national strategy for drugs for rare diseases.

Using the discussion paper as a guide, Canadians provided feedback by completing an online questionnaire, sending a written submission by email or mail, or participating in one of five virtual public town halls.

Who was the focus of this engagement?

• The engagement was open to all Canadians

In addition to collecting feedback from Canadians, we are continuing to work closely with provincial and territorial officials to build a strategy that will work for all Canadians in the context of Canada's health system and respect the role of provinces and territories in health care delivery.

We are also engaging with health stakeholders and Indigenous partners to gather their views. To ensure a patient-centered approach, virtual meetings were organized for patients, patient groups, and clinicians. Virtual meetings were also organized with other stakeholders, including academics, researchers, private payers, industry and other key stakeholders.

Next steps in the public and stakeholder engagement

Over the summer, as a follow up to the report, Health Canada will continue discussions with patients and caregivers, health care professionals, researchers, private drug plans, the pharmaceutical industry, and other stakeholders.

Further public consultation to inform a comprehensive model for the national strategy will take place in the fall. This webpage will be updated with more information when available.

What we heard

Final reports

• Building a National Strategy for Drugs for Rare Diseases: What We Heard from Canadians

Contact us

Office of Pharmaceuticals Management Strategies
Strategic Policy Branch
Health Canada
Brooke Claxton Building
70 Colombine Driveway
Ottawa, ON K1A 0K9

Email: hc.opms-bsgpp.sc@canada.ca

For more information

• Discussion paper
• Final Report of the Advisory Council on the Implementation of National Pharmacare