A Vancouver Island family is frustrated that the BC government is dragging its feet when it comes to funding a cystic fibrosis medication for children while other provinces in Canada already have.
Ten-year-old Maysa Milligan from Courtenay, BC, is one of 40 kids in the province aged six through 11 who can’t access Trikafta, a medication that’s been called a game-changing drug for treating cystic fibrosis.
Cystic fibrosis is a fatal, progressive disease that attacks multiple organs, primarily the lungs.
“To know that this life saving drug that could change everything about our daughter’s health is available but just out of reach is incredibly frustrating,” said Sarah Milligan.
Adults across the country can access the medication, and recently it was approved for use in children by Health Canada.
After it was approved federally in the spring, Ontario was the first province to offer funding for it, then every other province in Canada except BC followed suit.
“Sometimes I just wish we could teleport to Alberta or something like that,” said Maysa.
“Most other kids could be running around or playing and having fun, and I’m stuck inside,” said the 10-year-old.
The Milligan family has taken to social media with a plea to BC’s health minister to help greenlight funding for the drug.
“BC is dragging its feet, which is frustrating because typically (cystic fibrosis) care in BC has been really good,” said Sarah.
Cystic Fibrosis Canada adds that a second review process for the drug also cleared its use for children, as red tape continues to stall its rollout in BC
“The children in BC shouldn’t be suffering needlessly waiting for this drug,” said Dr. John Wallenburg with Cystic Fibrosis Canada.
Without funding, the drug would cost the family about $300,000 a year.
“Every day that goes by she loses a little,” said the 10-year-old’s mother. “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.”
It’s a harsh reality Maysa is well aware of.
“I would love to finally be able to have something to improve my life,” she said.
CTV News reached out to the BC Health Ministry for a statement but did not receive a response in time for publication.