News

The Canadian Agency for Drugs and Technologies in Health (CADTH) provided this week short sighted and narrow guidance regarding game changing cystic fibrosis (CF) drug Trikafta, that, if adopted by the provinces, could effectively exclude over 25% of eligible Canadians with cystic fibrosis (CF), many of whom are youth, who could greatly benefit from the drug.

Cystic Fibrosis Canada is providing an exciting opportunity for the cystic fibrosis (CF) community to participate in a new study that will study the impact, both in time and money, that cystic fibrosis has on people living with the disease, their families and on society. Launched today, The Social and Economic Impact of Cystic Fibrosis in Canada: A Burden of Disease Study is open for registrations now until July 25, 2021.

The cystic fibrosis community is closer to its goal today as Health Canada announced the approval of Trikafta for sale in Canada, issuing a Notice of Compliance (NOC). Considered the single greatest innovation in the history of cystic fibrosis, Trikafta is a transformational drug that can change the lives of up to 90% of Canadians with cystic fibrosis. 

Building on a flawed consultation process, Regulatory Agency marginalizes and discredits CF patients, who they are meant to protect.

Cystic Fibrosis Canada is pleased to announce an important partnership with iMD Health Global (iMD), a CloudMD Software & Services company focused on health education, to provide credible resources regarding cystic fibrosis on the iMD platform.  This partnership provides increased access to thousands of healthcare providers and patients wanting to better understand the standards of cystic fibrosis (CF) care.

A letter has been sent to the Right Honourable Prime Minister Justin Trudeau regarding the regulatory agency marginalizing and discrediting CF patients, who they are meant to serve.

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.’

As many in this country face a painful wait for COVID-19 vaccines that could save their lives, they are experiencing the reality of what Canadians living with cystic fibrosis (CF) have endured for years. May is Cystic Fibrosis Awareness Month and Cystic Fibrosis Canada is working to urgently get access to transformative cystic fibrosis drugs that are available around the world, but not in Canada. Cystic Fibrosis Canada is calling on provincial governments to make life-saving CF drugs available to everyone who needs them now.

From time spent in hospital to daily at-home treatments and therapies to transplants, no one understands the realities of cystic fibrosis?better than those living with it and their caregivers. That is why Cystic Fibrosis Canada is asking our community to provide their input and experiences with the disease via a survey to help inform the future of our work.  

With the continued risk presented by the global COVID-19 pandemic, Cystic Fibrosis Canada has once again changed its signature fundraising event, the Walk to Make Cystic Fibrosis History, to a virtual format. This year, Cystic Fibrosis Canada is proud to present the 2021 virtual Walk to Make Cystic Fibrosis History’s Further campaign.