Yukon mother calling on territory to cover 'miracle' cystic fibrosis drug

·2 min read
Amy Labonte, a mother in Whitehorse, is calling on the territorial government to cover the cost of a cystic fibrosis drug that she hopes will improve her son's life.  (Brooke Martel Photography - image credit)
Amy Labonte, a mother in Whitehorse, is calling on the territorial government to cover the cost of a cystic fibrosis drug that she hopes will improve her son's life. (Brooke Martel Photography - image credit)

A Yukon mother is calling on the territorial government to cover the cost of a groundbreaking drug for people with cystic fibrosis that she hopes would improve her son's life.

Ontario, Alberta, Saskatchewan and Quebec have all said they would cover Trikafta, which costs roughly $300,000 a year at its list price, under publicly-funded drug programs.

Amy Labonte, whose son has the disease, is now calling on Yukon to do the same.

"I need their help to help me save my child's life," said Labonte, who is also a member of Cystic Fibrosis Yukon.

On a good day, Labonte said her son, Seamus, spends about four hours treating the disease. That includes using techniques — such as vibration or coughing — to drain mucus from the lungs, receiving inhaled medications through a compressor, or taking oral meds.

"That has been our life for 10-and-a-half years," she said.

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

Labonte said Trikafta could reduce the amount of time Seamus spends hooked up to a compressor, in the hospital, or battling respiratory infections.

"To think that that doesn't have to be our life for the next 10. Or that he's going to get the 10 is incredible. It means time. It means life."

"Miracle drug"

Cystic fibrosis is a genetic disease. At its root it 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 first 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.

Approved in the United States in October 2019, 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.

Labonte describes it as a "miracle drug."

"It's taking people off transplant lists. It's taking people from lung functions in the 30's to lung functions in the 70's. It's insane."

Effective but unaffordable

The drug's costly price tag, however, has made it inaccessible to many people with cystic fibrosis.

Vincent Bonnay/Radio-Canada
Vincent Bonnay/Radio-Canada

"This, of course, is an issue with the Canadian healthcare system," said Yukon Party MLA Brad Cathers. He wrote a letter to Yukon Health Minister Tracy Ann McPhee last week, urging the government to cover its cost.

"If we want to ensure that people have access to the treatment they need when they need it," he said. "If the government doesn't cover them the reality is that the individual will probably be without the treatment they need."

Cathers said he has not received a response from the government yet.

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