Drugs for rare diseases bilateral agreements: Overview
On March 22, 2023, we announced up to $1.5 billion over the next 3 years in support of the first-ever National Strategy for Drugs for Rare Diseases. This funding will help increase access to and affordability of effective drugs for rare diseases and contribute to improving the health of patients across Canada.
As part of this overall investment, we made up to $1.4 billion available to provinces and territories through bilateral agreements.
As part of these bilateral agreements, provinces and territories commit to:
- investing in improving coverage and access to:
- elected new drugs for rare diseases drawn from a common list
- other new and existing drugs for rare diseases
- improving screening and diagnostics for rare diseases
- working with us and other provinces and territories on projects to enhance the generation of real-world evidence to support decision-making for improved access to new rare disease drugs
- This work will align and is complementary to related projects underway through Canada's Drug Agency and the Canadian Institute of Health Information.
There are unique challenges associated with decision making about rare disease drugs. The common list of new drugs was developed with provinces and territories to ensure that the national strategy delivers the most possible benefits to all patients with rare diseases.
The common list is designed to help develop, collect, evaluate and use real-world data and evidence to make decisions about the listing and reimbursement of rare disease drugs within Canada's existing pharmaceutical management system. This could help with decisions related to future drugs for rare diseases.
We will publish the names of drugs on the common list as the pan-Canadian Pharmaceutical Alliance concludes its price negotiations.