B.C.to approve cystic fibrosis drug for youth after lengthy review, says Cystic Fibrosis Canada

A day after CTV News shared the story about a Victoria family wishing that B.C. would approve funding for a medication to treat cystic fibrosis in kids, the province appears to be moving forward on the issue.

Cystic Fibrosis Canada says it was told by the provincial government that it intends to approve public funding for the drug Trikafta for kids six and up starting in mid-September.

Trikafta was already cleared for use in adults everywhere in Canada, and was recently approved for use in young children by Health Canada in the spring.

This summer, every province in Canada, except for B.C., approved funding for the drug for kids six through 11.

Ten-year-old Maysa Milligan, who has cystic fibrosis, and her family have been calling on the B.C. government to follow suit and approve funding for the drug, which they say is life-changing for Maysa and would otherwise cost the family $300,000 a year.

While Maysa's mom, Sarah Milligan, says she's excited that B.C. is finally funding the drug, she says the wait has been too long already.

"It doesn't make sense to allow them to get worse before they get better. We know they're going to approve it, so the delay is unacceptable," she said Wednesday.

Just one day earlier, Milligan described how the progressive disease affected her daughter.

"Every day that goes by she loses a little," said the 10-year-old's mom on Tuesday.

"She gains scar tissue in her lungs that we can't ever undo. So the longer it takes to get access to these medications the sicker she gets. It potentially affects her lifespan and the rest of her life," she said.

DOUBLE REVIEW PROCESS

On Wednesday, Cystic Fibrosis Canada director of government and community relations, Kim Steele, told CTV News that the organization had received confirmation from the B.C. government that Health Minister Adrian Dix would be announcing funding for the drug sometime in mid-September.

In the meantime, advocates and families with cystic fibrosis say they blame B.C.'s system for approving drugs for delaying the medication.

B.C. requires a second review process, after a national one, for complex drugs, which can last months. It's a delay that prevents people from accessing life-altering medications, advocates say.

The provincial government did tell CTV News that it would be approving the drug for kids aged six and up "soon," but did not confirm the mid-September timeline.

B.C. man Tyrus Sleightholme says he's experienced firsthand what Trikafta can do for people with cystic fibrosis.

"[It's] life-changing. Like a second chance at life," he said.

His father, Dale Sleightholme, says it was remarkable to see the almost instantaneous effects of the drug on his son.

"You could call it as close to a thing as a cure for people with CF," he told CTV News.

Tyrus says he understands why Maysa's parents have been pushing the government to approve funding for the drug quickly.

"Two weeks is the difference between life and death for some people with cystic fibrosis – and that's the truth of it," he said.