YOU HAVE THE POWER.

Over the past two years, many Canadians with cystic fibrosis (CF) have been able to access Trikafta, a drug that is changing their lives. But provincial and territorial drug plans have not granted access to everyone who stands to benefit from this drug. We need your help to make this happen now.

CF steals many things from children. Restful sleep is broken up by coughing fits. Time with friends is second to daily physio and therapy routines. Schooling is interrupted by hospital stays and infections. Family dynamics may be strained by the stress and anxiety of managing a chronic illness. Dreams about their future are clouded by heavy realities of a terminal disease.

You can help change the face of cystic fibrosis by using our simple template tool to send a letter to your provincial or territorial elected official. Ask them to ensure Trikafta, a life changing CF drug, is funded for everyone who could benefit from it, including those with rare mutations who would have access to the drug in other countries. Your action today will help to ensure that more Canadians living with CF have healthier and longer lives.

Send a letter to your local elected member now!

**Please feel free to edit the letter in the text box below to add your story. The fields marked 'submission' in the letter will be automatically filled in with your information and that of your local elected member.**

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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 4,338 Canadians. There is no cure. Of the Canadians with cystic fibrosis (CF) who died in the past five years, half were under the age of 37 years and in 2021, CF patients spent a collective nearly 16,000 days in the hospital. Cystic fibrosis steals many things from people and families. Restful 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 patients 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 6+ with the most common CF mutation. But there are others who can respond to Trikafta that are getting sicker and sicker as they wait for access.

Canada’s cost-effectiveness bodies, CADTH and INESSS are reviewing Trikafta for those who are 2-5 years old with at least one copy of the most common mutation that causes CF, F508del.  As my elected official, I need your support in ensuring  Trikafta is funded for 2–5-year-olds expeditiously and that deductibles on life changing medicines for rare diseases are eliminated, these deductibles cause undue financial hardships for families. This drug will change their lives.

Trikafta can also treat at least 170 rarer mutations that cause CF. Sadly, Canadians with CF who have these mutations can’t access this life-saving drug. If these people lived in other countries, they would have access. The United States, France, England and Israel have used laboratory data to demonstrate that Trikafta works in people with these rarer mutations, but here in Canada, Health Canada does not generally accept these kinds of data. So while patients in other countries experience the dramatic health improvements brought by Trikafta, Canadian patients who could benefit are left to die.

Nearly 200 Canadians with rare mutations urgently need access to this life-saving drug. Until Health Canada catches up with its international peers, we need [submission:values:province__territory] to fund this drug for those with rare mutations who could benefit. To not do so would be to punish those who had the unluck to be born with a rarer CF genetic mutation. I am calling on you to work with other elected members to champion access to Trikafta for all who can benefit, including 2–5-year-olds and those with rare CF mutations. Only you can help change their futures now. Cystic fibrosis can’t wait.

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