ACT NOW: Urgent Call to Break Through Limits

Every day, Canadians with cystic fibrosis (CF) are denied access to the life-changing benefits of the CF drug Trikafta due to outdated and restrictive access policies. Even those approved for treatment face insurmountable barriers at federal, provincial and territorial levels. People with rare mutations are especially vulnerable, their situations growing increasingly dire. This must change—now.

Your Voice Matters:

Right now, your action is crucial. We cannot remain passive as members of our CF community suffer daily. How can you help? Use our straightforward letter template to demand that your elected official take immediate action. Every Canadian with CF, especially those who may benefit from Trikafta, deserves the chance to try it.

Customize Your Message:

Add your personal story or experiences to the letter if you would like. The power of your unique voice is immense—it can ignite change and move mountains.

Change can’t wait. Every Canadian with CF who may benefit from Trikafta deserves swift and unrestricted access to it. And every delay is more than a setback—it's a life impacted. Join us in this critical fight for equity and justice in healthcare.

Together, We Can Remove the Limits Imposed by CF.

Act Now: Demand Universal Trikafta Access!

TEST MODE

Join CF Canada in advocating for unrestricted access to Trikafta for all who may benefit by raising your voice and sending a letter to your elected official right now.

*All fields in brackets in the letter will be automatically filled in. You don't need to complete the letter, unless you want to personalize it with your own story.

First Name *

First Name

Last Name *

Last Name

Email Address *

Email Address

Postal Code *

Postal Code

Connection to CF *

Connection to CF

Province/Territory *

Province/Territory

Phone Number

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Please enter a postal code to continue.

Dear [recipient position will go here] [recipient name will go here],

Your Letter *

My name is [submission:values:first_name] and I am writing today as [submission:values:connection_to_cf].

Cystic fibrosis is a fatal genetic disease affecting 4,445 Canadians. There is no cure. Of the Canadians with cystic fibrosis (CF) who died in the past five years, more than half were under the age of 38 years. Canadians with CF have an average of over 16,000 clinic visits and over 5,900 home IV days per year. This disease steals both their health and time. While treatments that improve the lives of people with CF exist, they are only available to some, leaving one in seven living with the disease ineligible for life-changing therapies, such as the drug Trikafta.

Day-to-day life with cystic fibrosis is challenging. Needed sleep is broken up by coughing fits. Time with friends and loved ones is second to daily physiotherapy and treatment routines. School and work are interrupted by frequent infections and hospital stays. Dreams about the future are clouded by the heavy realities of living with a fatal disease.

But there is hope. There are highly effective medicines that treat the basic defect of cystic fibrosis and significantly improve the health outcomes and quality of life for many people with CF. One of these drugs, Trikafta, is helping people get off the lung transplant list and get on with living. It is giving people hopes and dreams that CF stole away. [submission:values:province__territory] understands the transformative effects of this drug and has already funded Trikafta for those aged two years and older with the most common CF mutation. But there are others who can or may respond to Trikafta that are getting sicker and sicker as they wait for access.

Health Canada recently approved  Trikafta for those with certain rare mutations that are known to benefit from the drug however this still leaves many Canadians behind, whose lives could change from Trikafta. As my elected official, I need your support in expanding access to all Canadians with CF regardless of their genetic profile.  I call on you to ensure that, regardless of the decisions by the review bodies that make funding recommendations to our public drug plans, Trikafta becomes available in [<province/territory>] and that deductibles for people with rare diseases, where they exist, are eliminated. These deductibles cause undue financial hardship for individuals that need this life-changing drug.

Close to 300 Canadians with rare mutations could benefit from Trikafta and urgently need access now but continue to face barriers strictly found by living in Canada.  In other countries, such as the United States, France, England, and New Zealand, individuals gained access to Trikafta years ago, based on laboratory data showing that the drug is or may be beneficial to many rare mutations.  But here in Canada, the system is not accustomed to this evidence and is only now starting to recognize its value. So, while individuals in other countries experience the dramatic health improvements brought by Trikafta, Canadians who could benefit still continue to wait.

In France, a right-to-try model is in place for people with rare mutations that could benefit from Trikafta which, if implemented in Canada, could help up to 180 Canadians with CF access the drug.  Until our system catches up with those of our international peers, we need [submission:values:province__territory] to support access as well as fund this drug for those with rare mutations who will or may benefit. To not do so would create greater inequities for those who were born with a rarer CF genetic mutation. I am calling on you to work with other elected members to stop leaving Canadians behind and champion access to Trikafta for all who may benefit. Only you can help change their futures now. Cystic fibrosis can’t wait.

Sincerely,
[your name will go here]
[your email address will go here]
[your location will go here]

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