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home / 世界杯决赛2022

cornwall woman's family pleads for 'miracle' drug to treat her cystic fibrosis

twenty-five-year-old chanelle lafleche has to stop and ...

by elizabeth payne
published jul 24, 2023
read time 4 minute read
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read time 4 minute read
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chanelle lafleche, 25, and her dog, everest, on sunday, july 23, 2023. lafleche, who has a rare genetic sub-type of cystic fibrosis, is among about 10 per cent of cf patients who are not approved for trikafta in canada. many describe the drug as a miracle for people with cf. ashley fraser / postmedia
twenty-five-year-old chanelle lafleche has to stop and catch her breath as she talks about the drug that could turn her life around. “everyone i know with cystic fibrosis is on it. they say it is life changing. they can’t live without it,” says the young cornwall woman.
she adds that her friends’ “minds are blown” when she tells them she doesn’t qualify.
trikafta is the name of the drug that many describe as a miracle for people with cystic fibrosis, the inherited disorder that causes severe damage to the lungs, the digestive system and other organs.
trikafta is widely prescribed for people with cystic fibrosis across canada.
the drug does not cure the disease, says paul eckford, chief scientific officer with cystic fibrosis canada, but, for the majority of people taking it, there is a “really significant” and rapid improvement. some get off lung transplant lists, others regain a quality of life they haven’t known in years.
“it has been absolutely dramatic,” said eckford.
but not everyone qualifies.
lafleche, who has a rare genetic sub-type of the disease, is among about 10 per cent of cf patients who are not approved for the drug in canada. she notes that the u.s. has already approved use of the drug for people with her genetic type of cf and it is being tested in canada for that same group.
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chanelle lafleche’s mother, celine lafleche, said, ‘i can’t allow her just to wilt away. … it is just ridiculous.’
chanelle lafleche’s mother, celine lafleche, said, ‘i can’t allow her just to wilt away. … it is just ridiculous.’ ashley fraser / postmedia
lafleche had to have one lung removed earlier this year and has about 30 per cent capacity in the other lung. she has numerous related health issues, especially the kind of recurring infections that mark the disease. just getting through a conversation can be a challenge.
as her condition worsens, lafleche, her mother celine, and other family members and friends are desperately pleading with authorities to make an exception to save chanelle’s life.
“what would you do if she was your daughter?” celine lafleche asked ontario health minister sylvia jones in a letter — one of dozens she has written to numerous people and organizations — begging for compassionate access to the drug for her daughter.
friends and family have started a gofundme fundraiser to try to raise enough money so that lafleche can buy the drug, which costs $320,000 a year. so far they have raised less than $13,000.
celine says she is working 24/7 trying to contact people who might be able to help.
“i can’t allow her just to wilt away because they weren’t ready to give it to her. it is just ridiculous.”
lafleche was diagnosed with cf when she was around seven. her condition began to worsen significantly when she was about 18 and since then has steadily gone downhill. she has spent long periods in hospital, and has been treated for frequent infections and other related issues.
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she and her family refuse to give up hope.
in a letter she wrote to draw attention to her daughter’s plight, celine described herself as the “desperate, overwhelmed and proud mom of chanelle who struggles every day to just breathe.
“suffice to say that time is not on her side and she cannot afford to wait for the government to decide if she ‘deserves’ to live. trifakta is considered to be a miracle drug,” said celine.
eckford, of cystic fibrosis canada, said the situation with the drug in canada is complex, but officials could give it to chanelle and the more than 200 patients like her in canada under extraordinary access programs.
lafleche’s doctor, dr. diane loughheed, who is also a professor at queen’s university, has asked health canada for special access to trikafta for her patient, saying lafleche, because of her condition, can’t wait for results of clinical trials underway in canada and the subsequent approval process.
“she stands to benefit tremendously from trikafta, in terms of improvement in function of her remaining one lung, reduction in the frequency and severity of pulmonary exacerbations and therefore reduction in the rate of loss of lung function in the future,” loughheed wrote.
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“this has the potential to significantly delay and potentially prevent the need for a lung transplant.”
eckford said lafleche is “falling through the cracks” of the system of approving drugs in canada.
the drug was originally tested for patients with the most common mutation related to cf, but there are hundreds of rarer mutations. in the u.s., the fda accepted laboratory evidence about the drug’s effectiveness for people with 177 of those rare mutations — including the one lafleche has. canada has no similar system, he said, but relies on double blind randomized control trials, which are the gold standard, but which are not practical for extremely rare mutations.
eckford said there is clear evidence that lafleche would benefit from the drug and it should be offered to patients like her, either by provinces or through the federal government, on a compassionate basis, especially since its safety has been proven and there is evidence from the u.s. that it works.
eckford notes that the high cost of the drug is likely a factor in officials’ reluctance to have it prescribed off-label.
“nobody would be having this conversation if it was $20 a month.”
the system, he said, is failing lafleche and others.
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her family is determined it will not fail her.
“i feel this is a form of discrimination. we are in canada. i can’t believe this is happening,” said celine.
elizabeth payne
elizabeth payne

elizabeth payne is an award winning health journalist whose stories became must-reads during the covid-19 pandemic and beyond.

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