The BC NDP government confirms it will approve the cystic fibrosis medication Trikafta for children six to 11 years old starting next week.
The province is acting on a recommendation from the Canadian Drug Expert Committee.
Minister of Health, Adrian Dix, says “living with cystic fibrosis is a daily struggle for both patients and their families” and expanding access to Trikafta for children aged six to 11 provides an additional treatment option for the hundreds of children with cystic fibrosis.
Trikafta is a triple-combination medication of ivacaftor, tezacaftor and elexacaftor, and is given to cystic fibrosis sufferers who have at least one F508del mutation.
It has been shown to improve lung function and quality of life as well as reduce the frequency of lung attacks.
A Vancouver Island woman, who says Trikafta has changed her life, says the medication should have been approved for use in children months ago.
Kim Wood of Campbell River says it’s unfortunate the province waited this long while other jurisdictions approved it for children.
She says it’s important for children to be able to start taking Trikafta as early as possible because slowing the progression of cystic fibrosis in their bodies will have a big impact later in their lives.
Wood says she’s aware of the case of at least one 10-year old girl who could have had a much more enjoyable summer had she been able to use Trikafta.
“She gets one summer being 10 years old, and she’s been stuck in the hospital when she could have started taking Trikafta as early as July, that’s when Ontario approved it, and she could have had a completely different summer.”
Wood adds that if it had been approved in July, the coming cold and flu season would have been much different for children.
She say autumn is a very different time for people with cystic fibrosis because its cold and flu season.
“A common cold affects us a lot more harshly than the average person, and so if she could have gotten her health up to a healthier point going into the cold and flu season, then she would have been a lot better off going into her school.”
Wood says she recently celebrated a milestone she wasn’t certain that she would reach – her 40th birthday.
She first began taking Trikafta two years ago while it was being tested and was amazed by the difference it made.
Wood says after a few days of using the medication she was awe-struck because she was able to inhale so clearly and completely unrestricted, “it was like I could, I was taking a deep breath in, and I just felt like I could go for ever and ever.”
She began to feel other changes as more oxygen reached other parts of her body.
Wood says her body was changing in so many positive ways it took her some time to fully realize all the physical improvements taking place.
Cystic fibrosis is a rare, life-threatening disease where thick mucus builds up in the lungs, digestive tract, and other parts of the body.
It causes severe respiratory and digestive problems as well as other complications such as infections and diabetes.
Kim Steele of Cystic Fibrosis Canada calls Trikafta “the single greatest innovation in the history of cystic fibrosis.”
She says it’s often considered a lung disease, but actually creates thick sticky mucus throughout the body and causes problems in the pancreas, lungs, and liver.
Steel says slowing the progression of symptoms improves the overall body health in recipients.
Cystic Fibrosis Canada says families are encouraged to speak with their clinic to determine eligibility for Trikafta and the next steps they will need to take.
The province says Trikafta is covered by the BC Expensive Drugs for Rare Diseases process, which allows patients to access high-cost drugs for rare conditions on a case-by-case basis.
It says that at this time, approximately 150 people in BC benefit from Trikafta PharmaCare coverage.
