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Yukon to cover 'miracle' cystic fibrosis drug's $300k price tag

·2 min read
Amy Labonte, a mother in Whitehorse, says her son will have a better life now that the Yukon government will cover the cost of a 'miracle' cystic fibrosis drug. (Brooke Martel Photography - image credit)
Amy Labonte, a mother in Whitehorse, says her son will have a better life now that the Yukon government will cover the cost of a 'miracle' cystic fibrosis drug. (Brooke Martel Photography - image credit)

Amy Labonte says she cried for joy when she heard Yukon's territorial government would cover the cost of Trikafta, an expensive but groundbreaking drug for people living with cystic fibrosis.

"I think I can breathe for the first time in 10 years," said Labonte, whose 11-year-old son Seamus has the disorder.

A motion from NDP MLA Annie Blake, calling on the government to cover the drug under the Yukon Drug Formulary, was endorsed unanimously on Sept. 13. That means it'll be free of cost to Yukoners 12 and over with cystic fibrosis within two months.

Earlier this month, Labonte asked the territorial government to cover the drug, which costs roughly $300,000 a year at its list price under publicly-funded drug programs.

Labonte said access to Trikafta will change Seamus's life for the better.

"My son has been having to spend stints in the hospital and take all those antibiotics, take all these drugs and spend time doing these inhaled medications," said Labonte. "To have something to be able to take that weight off is incredible."

Cystic Fibrosis Canada/Handout/The Canadian Press
Cystic Fibrosis Canada/Handout/The Canadian Press

Labonte said her son is excited to start using the drug and to spend more quality time together.

"He had kind of mentioned to me that he is excited to get to Trikafta so that we can spend more time doing regular mom and son things together and not always just fundraising and raising awareness," said Labonte.

Ontario, Alberta, Saskatchewan, Quebec, Nova Scotia and P.E.I. have already announced they would cover the drug under their provincial health programs.

"Miracle drug"

Cystic fibrosis is a genetic disease, which, at its root, is caused by a mutation that affects a type of protein. It leads to mucus buildup in the lungs and digestive system, resulting in infections, breathing problems and additional complications.

According to Cystic Fibrosis Canada, one in every 3,600 children are born with the disease, and over 4,370 Canadians attend specialized clinics.

Trikafta was approved by Health Canada in June 2021 for patients ages 12 and over who have at least one of the gene mutations that leads to cystic fibrosis.

Cystic Fibrosis Canada says research has shown that Trikafta could reduce severe lung disease by 60 per cent, increase life expectancy and decrease the number of deaths by 15 per cent.

Until now, the drug's costly price tag made it inaccessible to people with cystic fibrosis in the Yukon.

But Labonte is not done fighting.

She's wants Trikafta to be approved for use in children below the age of 12 as well.

The drug was approved for use in the United States for children over six-years-old in October 2019.

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