Last week, CORD co-authored an open letter addressed to Prime Minister Trudeau calling for a reconsideration of the federal government’s proposed drug pricing reform (see also accompanying media release ). The letter was the culmination of our frustration over how the planned changes have continued to move forward without consideration of the concerns of patients – particularly how the proposal will impact patient access to medicines.

As you may be aware, the proposed reform is intended to lower drug prices for Canadians by changing the way the Patented Medicine Prices Review Board (PMPRB) determines and regulates non-excessive prices. As an organization that represents patients with rare disorders, we fully support the goal of making medicines affordable. However, Health Canada’s proposed approach goes far beyond what is needed to achieve this objective and will negatively impact the availability of new treatments in Canada. Specifically, it will set prices of new medicines so low that most companies will not be able to bring them to Canada.

We have been actively engaging on this file since it was first released in 2017, and have consulted with patients and the public to develop extensive and detailed feedback over the past two years (see CORD’s June 2017 and February 2018 submissions to the federal government’s consultations). I also participated as a patient representative on the PMPRB Steering Committee on Guidelines Modernization.

Ultimately, none of our input was addressed or resulted in any substantive changes in the Health Canada and PMPRB proposals. It appears that Health Canada intends to move forward on the proposal with virtually no changes from the original proposal released two years ago. We believe there are other approaches, which have been used by other countries, that the government could consider to achieve lower prices without harming patients.

In sum, the government has not been listening to patients on this important issue. We need your voice to make the government stop and listen. We ask for 10 seconds of your time by going to to:

  • send a pre-written letter on this issue to your Member of Parliament (c.c. the Prime Minister and other key decision makers) and
  • share this opportunity with other patients/caregivers in your community by clicking the buttons “Share on Facebook” and/or “Share on Twitter” found at the bottom of the website.

The aim of this effort is to use the weight of our collective voices as patients (and potential voters) to inform decision-makers that we do not support the proposed PMPRB reform.


Dr. Durhane Wong-Rieger, PhD
President & CEO
Canadian Organization for Rare Disorders