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The following letter was sent by Cystic Fibrosis Canada to Prime Minister Trudeau on Thursday, May 27th 2021. For contextual information, read our news post 'CF Voices Under Fire from Regulatory Agency Meant to Serve Them'.
Re: Regulatory Agency marginalizes and discredits cystic fibrosis patients, who they are meant to serve
Dear Prime Minister:
On behalf of Cystic Fibrosis Canada, I am writing to you with grave concerns we have about actions taken by the Patented Medicines Prices Review Board (PMPRB) that sharply conflict with your focus on transparency, inclusion and accountability. We ask that there be a thorough investigation of this regulatory body and that the implementation of the Amended Patented Medicines Regulations and Guidelines currently set for July 1, 2021 be stayed until this investigation occurs and we have certainty that patients are protected.
We recently learned through disclosure provided by an ATIP request that the PMPRB planned to use its resources and power to malign the very stakeholders it is supposed to protect. The agency’s communications plan demonstrates that PMPRB aimed to discredit Members of Parliament, the cystic fibrosis (CF) community and two named patient organizations who expressed concerns about the changes to the regulations and associated guidelines. This action is deeply concerning to us, particularly given that all of this happened during a period of public consultations on changes to the PMPRB, led by the PMPRB.
Cystic Fibrosis Canada is committed to improving the health of people affected by cystic fibrosis. Our mission is to end cystic fibrosis and to help all people living with CF. For the past 60 years, we have helped to change the course of the disease under the watch of people living with cystic fibrosis, their families and our Board of Directors. It is our job and within our mission – as a registered Canadian health charity - to speak up when we believe there are barriers impacting access to treatments that could improve our community’s health outcomes. It is for this reason that we have provided feedback to the PMPRB on their proposed regulatory changes.
The issue of pricing drugs in Canada – particularly patented medicines which offer the most innovation and hope to those facing serious medical challenges – is of vital importance to patients. Access to affordable and appropriate drug therapies in a timely manner is a matter of life and death for many patients, including people living with cystic fibrosis. It is vitally important that the patient voice is considered and reflected upon.
Cystic Fibrosis Canada has provided feedback to the PMPRB. We noted that we agree with the government’s direction to lower drug prices and we also agreed with the changes to the comparator countries. We did also note some areas we did not support. While there are differing opinions on the PMPRB changes, it should be stressed that, based on the number of patient groups in the coalitions we belong to, our perspective was shared by the majority of patient groups consulted.
With a policy change of such importance, we would have thought that the agency would ensure there was meaningful debate and discussion. Wouldn’t a fair and collaborative approach be essential to building a policy that will truly benefit those who it serves, namely Canadians? This has not been our experience. We have provided our submissions and participated in webinars held by the agency. In none of these sessions was there ever a summary of the feedback provided and more importantly, on the reasons for not incorporating changes or the recommendations from patients.
While we have always had issues with the process, the intentions of the PMPRB as noted in their communication plan, bothers us the most. To label those who disagree with aspects of the agency’s direction as opponents is simply wrong. Further, to suggest that we are misinforming and thereby misleading the public is insulting and completely inappropriate for an agency whose mandate is to protect our cystic fibrosis community and the wider Canadian public.
As the CEO of an organization dedicated to serving people with a fatal disease, who now have an opportunity to access medications that will turn this disease on its head, I cannot convey the dismay and concern I have that a federal agency deems this community to be a threat. To specifically target the credibility of this community is beyond what I could comprehend as reasonable or appropriate for a federal agency tasked to deliver on the government’s policy direction.
This government has touted itself as one that aspires to have transparency and accountability. I believe that a federal agency that targets a patient community for speaking out about its worries over pending drug pricing changes, because it is a life and death situation for them, is not aligned with the character of the government and frankly of an agency that we respect and consider credible.
I am writing to you to stand by the values you promote, stop the changes to the PMPRB and conduct a full investigation of the agency and its work.
Chief Executive Officer
Cystic Fibrosis Canada
Katie Telford, Chief of Staff, Prime Minister’s Office
Greg Fergus, Parliamentary Secretary to the Prime Minister and Treasury Board
Honourable Jean-Yves Duclos, President of the Treasury Board
Honourable Patty Hajdu, Minister of Health
Jennifer O’Connell, Parliamentary Secretary to the Minister of Health
Ms. Karen Hogan, Office of the Auditor General of Canada
Best Medicines Coalition
Canadian Cystic Fibrosis Treatment Society
Canadian Organization for Rare Disorders: Info@raredisorders.ca
CF Get Loud: Cfgetloudcanada@gmail.com