Canada Will Provide $1.5 Billion to Provinces to Support Rare Disease Programs


Canada’s unemployment rate is at a record low. Industries have recovered 126% of the jobs lost by the pandemic. On the health front, scientific knowledge and the ability to develop treatments is growing exponentially.

It is critical that Canada’s healthcare and regulatory models be in sync. Currently, 95% of known rare diseases do not have approved treatments. recently reported that the Government has announced it will provide $1.5 billion to provinces over a three-year period. This is an opportunity to support Canadians affected by rare diseases.

The funds will provide investments in screening, diagnostic tools, and trial networks. The need for additional funding and medications for Inuit and First Nations is well documented.

A new advisory group is currently being established.

Canada can now join other countries focusing on the modernization of health systems in order to provide support and care for rare disease patients.

The funding allows the use of new resources that can create strategies that more adequately accommodate people with rare diseases.

Initiating the Initiative

It is suggested that Canada adopt the definition used by the European Union which is consistent with current international standards. The WHO defines rare diseases as one individual in 2,000 people or less affected.

Aligning with other countries would give the advantage of accelerating emerging innovations and treatments. It would provide guidance to patients and to patient associations, manufacturers, and various decision-makers in government. Applying international learning to Canada’s platform would create a positive impact.

France has successfully implemented a program that provides early access. Treatments are made available for people who urgently need them prior to pricing negotiations, reimbursement, or market permission.

It is noteworthy that 70% of drugs were made available to patients in France prior to US FDA approval.

As provinces and territories finalize the bilateral agreements, it will be necessary for provincial and federal agencies, as well as sponsors, to collaborate.

It may be difficult to work out compatible comparisons among EU countries due to their national-based systems. However, lessons can still be gleaned from regional collaboration, and information sharing, and still remain current with ever-changing needs.

When looking at European countries for lessons that can be useful, access programs are included before approval by regulatory agencies is granted. The programs are created to help patients gain access to treatments that may possibly save their lives. In any event, manufacturer negotiations are not impacted.

Bilateral Agreements

As a follow-up to the Canadian Government’s recent announcement, $1.4 billion of those funds will be available to territories and provinces by way of bilateral agreements. These agreements present an opportunity for the creation of a uniform definition of rare diseases, share knowledge, and allow access to emerging treatments in an orderly manner.

In Appreciation of the New Opportunity

The funding presents an opportunity to have:

  • Collaboration between government agencies and the rare disease community
  • Aspire to a strategy that aligns with the highest standards of the markets including key elements such as a conclusive definition for rare diseases
  • A coherent regulatory pathway
  • Investments in research and development
  • Address the needs of three million Canadians with a rare disease

Pfizer and the rare disease community thank the Minister of Health for prioritizing the national program for patients with rare diseases.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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