National Strategy for High-Cost Drugs for Rare Diseases Online Engagement

From Health Canada

Current status: Open

This engagement will be open from January 27, 2021 to March 26, 2021.

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 high-cost drugs for rare diseases.

As Canada considers how best to create a national strategy on high-cost 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 invite Canadians to share their ideas and views on what a national strategy could look like. This feedback will help inform the design of the strategy and ensure it helps patients get better access to the effective drugs they need.

How to participate

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

Using the discussion paper as a guide, Canadians can provide feedback in the following ways:

  1. Complete the online questionnaire
  2. Send a written submission via email or mail
  3. Participate in a virtual public town hall

Who is the focus of this engagement?

In addition to collecting feedback from Canadians, we are working 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 will also engage with health stakeholders and Indigenous partners over the coming months to gather their views. To ensure a patient-centered approach, virtual meetings are being organized for patients, patient groups, and clinicians. Virtual meetings are also being organized with other stakeholders, including academics, researchers, private payers, industry and other key stakeholders.

How do I participate in a public town hall?

To give Canadians an opportunity to share their views and ideas in an interactive way, join us for one of the five public town halls. The town halls will be virtual, where Canadians can engage in the conversation via video or by telephone.

There is limited capacity for each town hall, so we ask that you register for only one session to give more individuals an opportunity to participate. Each town hall will be up to 90 minutes long.

Contact us

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


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