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CF Voices Under Fire from Regulatory Agency Meant to Serve Them

May 26, 2021

On May 22, 2021, a communications plan and associated budget of the federal agency, the Patented Medicine Prices Review Board (PMPRB), was made public by Tom Kmiec, MP following an Access to Information and Privacy 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 fact, the cystic fibrosis community was named specifically as ‘opponents’ spreading ‘disinformation through organized public relation campaigns.’

Cystic Fibrosis Canada, its partners and community members are stakeholders of the PMPRB, a federal drug regulatory agency in Canada, whose guidelines have been under revision for several years. Cystic Fibrosis Canada has at times been vocal about the parts of the PMPRB’s new guidelines that we do not support. Why? Because the health of our community members comes first, above all else. Canadians living with cystic fibrosis need access to innovative life-saving therapies not yet available in Canada. Our job is to speak up when we believe there are barriers that limit access to these new innovative, life-changing medicines for our community. We have provided our feedback to the PMPRB and outlined the parts of the guideline changes we support and areas for improvement.

Suggesting that our organization and community have spread misinformation is offensive and deeply concerning. For over 60 years, Cystic Fibrosis Canada has helped to change the course of this disease as a credible and ethical organization under the watch of patients, families and the Boards of Directors. We have helped share patient voices and experiences, all of which deserve to be respected and listened to.

The fact that the PMPRB developed a communications plan to use its taxpayer funded resources and power to marginalise and invalidate the voices of CF patients presents a serious concern: it is indicative of conduct that does not comply with the standards Canadians should expect from a regulatory agency. It highlights that the PMPRB has little interest in really considering patient perspectives and will even go as far as discrediting them if patients are not aligned with their viewpoint.

Find out more about the PMPRB and our submissions to them regarding their guidelines.

What does this mean for access to current CF drugs?

This current situation with the PMPRB is not related to the approval of Trikafta. Trikafta has already been submitted to Health Canada and is working its way through the regulatory system, including a review by the PMPRB. Cystic Fibrosis Canada will continue to advocate for access to Trikafta and other life-saving CF drugs until they are available to all who need them.

What CF Canada is doing about it:

The poor conduct of the PMPRB must not go unchecked, especially when the agency represents a gateway for future innovative therapies. Cystic Fibrosis Canada will be working, together with our partners and community, to hold the PMPRB accountable for their unacceptable conduct and to press for a truly fair stakeholder consultation process from the PMPRB that ensures patient voices are heard, respected and considered in matters pertaining to their life or death.

Our colleagues at Cystic Fibrosis Treatment Society have already drafted two powerful letters; one to the Auditor General of Canada and one to the President of the Treasury Board for the House of Commons. We thank the Cystic Fibrosis Treatment Society and its founder, Chris MacLeod, for their leadership on this front. We strongly support the calls outlined in these letters. Thanks also to our colleagues at CF Get Loud who swiftly launched a response on social media, calling the CF community to action to alert MPs to the news.At Cystic Fibrosis Canada, we want to see the PMPRB held accountable for their conduct. Our approach is multipronged:

  • We will be sharing our concerns about the PMPRB with the Federal Standing Committee on Health (HESA) on May 31 or June 4.
  • We are writing to our Federal Emergency Access to Trikafta Caucus – a group of supportive MPs from all political parties – and will seek their counsel on a coordinated response.
  • We are preparing a letter to Prime Minister Justin Trudeau to draw his attention to this deeply concerning matter.
  • We will continue to work with our partners in CF, the CF Treatment Society and CF Get Loud.
  • We’re in touch with the Best Medicines Coalition, a national alliance of patient organizations that we are a member of, to support with their response.
  • We will work with a coalition of 13 health charities to drive more attention to this issue.

Cystic Fibrosis Canada has been here for over 60 years helping to lead change for the cystic fibrosis community. We will continue to defend your interests – the interests of the CF community – to go further towards longer, healthier lives for Canadians with cystic fibrosis. Learn more about our work.

Thank you to our generous donors, volunteers and supporters who make this work possible.

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