Trikafta for Chanelle

My name is Amanda and Chanelle is my 25 year old sister. Numerous people have been reaching out to help cover the costs of her life saving medication, so friends of the family have written this below message in order to get things going. Thank you to everyone ❤️.

- Amanda Dufour

"Friends of Chanelle Lafleche and family, not sure if you have seen the recent media coverage regarding Chanelle’s fight to receive life-saving medication, which she is unable to receive due to a funding decision by the Province of Ontario. Celine and Chanelle have courageously shared their story and many of you have said that you wanted to help. We, some of her family and friends have started this page with the goal of raising some funds and trying to get her started on the medication.

A little history for you. Chanelle and her family are well known in our community. We have all shared our concerns over the years about her diagnosis of Cystic Fibrosis, her ongoing treatment, testing, so many hospitalizations, procedures etc. To finally learn that the “miracle drug” (Trikafta) that many of us hoped would be discovered, was now available in Canada, we hoped for the best for Chanelle. Instead of relishing this win over the horrible illness of Cystic Fibrosis, Chanelle is left again with a feeling of despair and discouragement, because people of power, Politicians and decisions makers are seemingly “Playing God” with her life and others like her by not funding the medication for her, due to her particular genetic mutation. The irony is that this medication has been seen to be beneficial to Chanelle’s gene mutation for people in the United States. If only she could start receiving treatment today.

Trikafta has been designed to “fix” defective genes. It is seen by many as a “miracle drug” which has in some cases, seemed to have cured a person of the disease. Chanelle needed this medication years ago, but it is not too late, if she could only start it now. She had a lung removed in January, which had been ravaged by the disease. Unfortunately, her remaining lung has a function of about 20-30%. Suffice to say that time is not on her side, and she cannot afford to wait for the government bureaucracy to determine if she "deserves" to live. Chanelle’s organs are all worsening, she has an enlarged heart with a rate that is double what it should be. She has started cirrhosis of the liver, excessive vomiting etc.

Chanelle’s medical professionals have pleaded for her to be able to receive Trikafta. Health Canada has approved the medication and offered a recommendation to the provinces of funding to 90% of patients with Cystic Fibrosis, yet not recommending funding for approximately 10% of the people with a certain gene mutation, which Chanelle has.

Chanelle and her family are currently pursuing all avenues to try and get her this medication and has sought the assistance of Members of Federal Parliament, Canadian Senators, Members of Provincial Parliament. Many of us have emailed or called the Provincial Minister of Health Sylvia Jones, to try and plead for assistance. Remember, the decision for funding of this medication is with the province so if you can send an email, please do so.

I ask you to imagine your child living like this, knowing there is a life saving drug available but not funded for her? Can you not empathize with a mother’s agony of seeing a way of keeping her daughter alive, but having it be financially impossible to achieve? Over $300,000.00 a year for this medication is an unimaginable thing for an average family. Can you imagine, as a parent, knowing you cannot afford to give your child the needed medication, when others can have it?

Please help if you can…"