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Building on a flawed consultation process, Regulatory Agency marginalizes and discredits CF patients, who they are meant to protect
Today Cystic Fibrosis Canada presented to the House of Commons Standing Committee on Health (HESA), calling on it to investigate the Patented Medicine Prices Review Board (PMPRB) for its broken consultation process and poor conduct, including its inflammatory plan to discredit the cystic fibrosis community, a community it is meant to serve. CF Canada also asked HESA to table an interim report on its study on the PMPRB guidelines and consultation before the House rises. Cystic Fibrosis Canada has echoed these concerns in a letter recently sent to the Prime Minister.
On May 22, 2021, a communications plan and associated budget of the federal agency, the PMPRB, was made public by Tom Kmiec, MP, following an Access to Information and Privacy (ATIP) request. From it, Cystic Fibrosis Canada learned of the PMPRB’s plan to use its resources, power and $56,000 of taxpayer money to malign the very stakeholders it is supposed to serve, specifically patients, patient groups and elected representatives. In the documents, the cystic fibrosis community was named specifically as ‘opponents’ spreading ‘disinformation through organized public relation campaigns.’
“I cannot fully convey the dismay and concern I have that a federal agency is targeting the credibility of this community, children and young adults who are fighting for their lives. It highlights that the PMPRB has little interest in really considering patient perspectives and will even go as far as villainizing them if patients are not aligned with their viewpoint,” said Kelly Grover, President and CEO, Cystic Fibrosis Canada. “The behavior exhibited by the PMPRB is beyond what we would consider reasonable or appropriate for a federal agency who is tasked to deliver on the government’s policy direction.”
This latest development follows the PMPRB’s flawed consultation process regarding its new guidelines, in which there was little importance placed on the patient perspective. Submissions from patient groups were not reflected in the minimal revisions made by the PMPRB, nor was their meaningful discussion on choices made by the PMPRB. With the magnitude of the drug policy changes proposed by the PMPRB in October 2020, meaningful consultation with those most affected should have been a priority. However, it was Cystic Fibrosis Canada’s experience and the experience of many other patient groups, that this was not the case.
The poor conduct of the PMPRB has been further reinforced through a separate ATIP request which showed calculations conducted by the PMPRB on two cystic fibrosis drugs if the guidelines were implemented. The calculations indicated that the manufacturer would be required to reduce their price by 99% - a change that would gravely effect drug accessibility in Canada. This runs in stark contrast to the PMPRB’s response to the CF community, in which the PMPRB discredited the concerns about the impact the changes would have on industry.
“We support the government’s goal of lower drug prices. However, we believe that this must be accomplished in a transparent, credible and consultative manner where all parties are listened to and frankly those with most at stake, Canadian patients, are respected. This has not been the case with PMPRB and this reality needs to be addressed by HESA immediately,” said Ms. Grover.
Today’s presentation to HESA is one of many initiatives carried out by Cystic Fibrosis Canada to hold the PMPRB accountable for its actions, including a letter sent to Prime Minister Justin Trudeau, on May 27, 2021 and a letter to the Federal Emergency Access to Trikafta Caucus on June 2. At the HESA meeting today, Cystic Fibrosis Canada President and CEO, Kelly Grover, requested an investigation into the Patented Medicine Prices Review Board’s conduct and called for the PMPRB’s new guidelines to be delayed from July 1st while the investigation is ongoing. Ms. Grover also urged HESA to call for a delay in the July 1st implementation of the PMPRB guidelines, as well as to table an interim report on its study on the PMPRB guidelines and consultation before the House rises.
Despite this conduct by the PMPRB, Cystic Fibrosis Canada continues to focus on its important work to advocate for access to the life-changing medication Trikafta, the single greatest innovation in the history of the disease, treating up to 90% of the CF population. As critical decisions that will impact access to the drug are expected from government bodies in June 2021 Cystic Fibrosis Canada is calling on provincial governments make these drugs available for everyone who needs them.