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Volunteer Advocate
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From the desk of the CEO: you made change happen.

As we enter final months of 2021, I am reflecting on what an extraordinary year this has been.

We continued to live in an extraordinary time of lock downs and social distancing. However, in this time of great challenge, we at Cystic Fibrosis Canada and the entire cystic fibrosis community accomplished something quite wonderful.

Through our collective efforts, we were able to finally say “welcome to Canada, Trikafta.”

As the positive announcements about Trikafta came in from Health Canada and the health technology assessment agencies, and have over the past month continued to come from nearly every province and territory, I’ve felt so thankful. Thankful that you, our CF community, has such tenacity and never give up. You worked so hard to make change happen. You’ve shared your stories, signed petitions, written letters and held meetings.

You relentlessly pushed for change.

And you made change happen.

I’ve felt thankful, too, that finally our decision-makers were doing what should have been done long ago. But, like you, I’ve also felt frustrated, recognizing that the decisions were sometimes short sighted, and not where we needed them to be. Frustrated that these decisions came too late for some in our community. And that, even at this moment, many still cannot access Trikafta due to various barriers.

If I take a step back though and think about how the trajectory of the disease is going to change, and more importantly, how the lives of so many Canadians impacted by cystic fibrosis will improve because Trikafta has arrived in Canada, I’m humbled and, honestly, quite emotional.

We are already hearing stories of people living with CF now opening up retirement savings accounts for the first time or planning for their careers. We hear of parents crying, because their child’s future is hopeful, and of kids jumping for joy.

To bear witness to this transformation is amazing. But to be able to be a part of that change and to work alongside every one of you is extraordinary and something so special for us at Cystic Fibrosis Canada.

I also want to note that I know for some of you the arrival of Trikafta brings mixed emotions.

For many of you, its arrival came too late as important members of your families passed away while waiting. I also know there are many people in our CF community who cannot benefit from Trikafta and you may feel left out. And for a number of people who will benefit from Trikafta, you may have had both feelings of joy and sadness. Having lived your whole life thinking it would develop in a certain way, and to now have that paradigm turned on its head may bring conflicting emotions – almost a crisis of identity.

Please know that all of you are not alone. There are many in your CF community having similar emotions and who share your experience. And we at Cystic Fibrosis Canada are thinking about you and how we can best support all of you as you navigate this new reality. We know that our work is far from done.

First, Trikafta is not a cure. Our CF community will continue to need access to quality healthcare and will still face a high treatment burden. Cystic Fibrosis Canada will remain focused on ensuring there is needed clinical care and innovations to improve the patient experience. We also will be focusing our investment in research on areas that will advance treatments for those who cannot benefit from highly effective modulators.

Finally, we will also remain focused on ensuring Trikafta and other CF modulator drugs are accessible and available to all those who can benefit from them and that our healthcare system is better equipped to welcome the next major CF breakthrough. Our advocacy will continue as our work is not done.

To those of you who have given your time, your expertise and your generous support this year, we are so appreciative of you all. And to those of you who are living with cystic fibrosis, please know Cystic Fibrosis Canada is committed to going further for all of you so that you can live long and healthy lives.

On behalf of everyone at Cystic Fibrosis Canada, thank you.

All the best,

Kelly