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.
chanelle lafleche’s mother, celine lafleche, said, ‘i can’t allow her just to wilt away. … it is just ridiculous.’