Canadian Cystic Fibrosis Community in Crisis: Latest Developments as Wait for Life Changing Drug Continues

OCTOBER 28, 2020

Today we respond not only to the Patented Medicine Prices Review Board (PMPRB) guidelines and the House of Commons Standing Committee on Health (HESA) motion, but also to the crisis our cystic fibrosis community faces.

Right now, our community’s most pressing and immediate need is access to Trikafta. They need this drug now. Research has proven that every day spent negotiating, debating or delaying access to this drug comes at a grave cost to Canadians living with cystic fibrosis. Longer term, our community and all Canadians need to have a regulatory system in place that allows for future breakthrough drugs, perhaps even a cure, to quickly get into the hands of those who need it. We have asked and will continue to push the government to take a balanced approach that addresses today’s urgent need for Trikafta, while protecting access to innovative medicines for future generations to come.

The PMPRB guidelines, which inform the regulation of patented drug pricing, have been cited by the manufacturer as the cause of their delay in bringing Trikafta to Canada. We are disappointed that the new guidelines, released on Friday, October 23 2020, do not appear to have factored in any of Cystic Fibrosis Canada’s recommendations that were submitted during the guidelines consultation process, nor do they keep patient voices at the centre. While the new guidelines do recognize that an evaluation process is needed for the future, the details are vague and don’t outline the inclusion of patients. We continue to call on the government to revisit these guidelines and find a needed balance between lower drug prices and access to innovative medicines.

On Monday the House of Commons Standing Committee on Health (HESA), a committee responsible for the oversight of Canadian health issues, voted to support a motion for further consultations on the PMPRB guidelines conducted by the HESA committee. We are pleased that this provides some time to get the guidelines right, however people living with CF can’t wait and we urge a swift process to ensure we have balanced guidelines within the existing timeline of January 1 2021.

In short, we implore the government to do whatever must be done to bring Trikafta to Canada now. We call on the government to firmly plant the patient at the heart of their decision making and to do the right thing. Make the smart, humane and ethical choice to work together to bring this drug to Canada now.

Cystic Fibrosis Canada will continue to push on all fronts to ensure current and future life-changing medications reach Canadians living with cystic fibrosis. Specifically:

• Building on our historic emergency all party meeting that was held on Friday, October 23, Cystic Fibrosis Canada will work with the participating Members of Parliament (MPs) and Senators, CF Get Loud and CF Treatment Society to develop an all party approach for access to Trikafta.
• We will provide feedback to the HESA consultations and seek to be as involved as soon possible in the process.
• Working with a coalition of 12 other health charities and patient groups, Cystic Fibrosis Canada will help raise public awareness that Canadians’ access to new life changing medicines is at risk due to the PMPRB changes

Ensuring people living with cystic fibrosis have longer and healthier lives fuels all of our decisions and actions at Cystic Fibrosis Canada and we will continue to work with our community to push further for people living with cystic fibrosis now, but also in the future.