Winnipeg teen says new drug for cystic fibrosis is 'a life changer'
'There was no denying this was the miracle we hoped it was going to be,' mother says
Once winded walking up the stairs, Beckett Meyer now sprints up and down — even skipping steps as he goes.
The 13-year-old Winnipegger is also biking in the snow and outrunning his classmates in phys-ed, all thanks to a breakthrough drug for cystic fibrosis called Trikafta.
"I feel really good," Beckett said. "It's certainly a life-changer, that's for sure."
Cystic fibrosis is a rare genetic disease that causes thick mucus to build up in the body. It can cause chronic respiratory infections, digestive issues and other health problems.
While not a cure, Trikafta has been hailed as a revolutionary treatment because it targets the root of the disease by fixing a faulty protein which causes the build-up of mucus.
The drug was approved by Health Canada in June 2021 for people age 12 and up with one genetic mutation that causes the disease, but the medication came with a list price of $300,000 per year.
Beckett's family and others had been advocating for provinces and territories to cover Trikafta under provincial pharmacare programs. Beckett's family even considered moving to Saskatchewan or Ontario where the drug was already being funded.
In October, Trikafta was finally added to the Manitoba's drug formulary after the province's participation in the pan-Canadian Pharmaceutical Alliance.
'The miracle we hoped it was going to be'
Beckett was the first pediatric patient in Manitoba to get it, his mother said.
"It was impossible not to be excited when you saw how well he was doing so fast, how quickly it started to work," said Desneige Meyer, Beckett's mother.
"There was no denying this was the miracle we hoped it was going to be."
Desneige says she is thankful Trikafta is finally available under Manitoba's pharmacare program. Her private insurance will still not cover it.
"Every medical test he's done he's shown nothing but improvements. His infections are gone, his lung function is up," she said. "There [are] no negative side effects. He's doing fantastic."
The three Trikafta pills Beckett takes daily have also allowed him to cut down the time he spends on breathing therapy by an hour a day.
"He's really starting to have a much more normal life," Desneige said. "All we can hope for is that he just continues to tolerate it as beautifully as he is now and keeps enjoying all of these benefits."
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Planning for the future
Another big benefit is being able to plan for Beckett's future, which hasn't been easy in the past because of the frequency he was sick and in and out of hospital, his mother said.
"Yesterday I signed him up for a two-week canoe summer camp," said Desneige. "That's something we never could have seen for him before."
Beckett was able to travel over the holidays to visit family in Vancouver. Next on the itinerary, his mom hopes he can take his Dream Factory trip to dive the Great Barrier Reef.
"What a beautiful thing to be able to start thinking about tomorrows and next weeks and next months," Desneige said. "We've never been able to do that."
Beckett says the best part has been simply not coughing everyday, and he's enjoying longer bike rides.