B.C. family grateful for expanded funding to cystic fibrosis drug, but questions why it took so long

The family of a Vancouver Island girl with cystic fibrosis says they are grateful more people will soon have access to a drug to treat the disorder, but questioned why they had to wait so long.

On Wednesday, the province announced that more people in B.C. will be able access Trikafta, previously only available to British Columbians age 12 and up or adults whose lung capacity is 90 per cent or lower. 

Starting Sept. 13, eligibility will be expanded to include patients age six to 11, and those 12 and older with a lung capacity greater than 90 per cent.

In a statement, Cystic Fibrosis Canada president Kelly Grover said the announcement "will change the trajectory of the disease and the future for many children and adults in British Columbia who live with cystic fibrosis."

Cystic fibrosis is a life-threatening genetic disorder that causes a buildup of mucus in the lungs, increasing the risk of respiratory infections and making it difficult to breathe. The disease also affects the digestive and reproductive systems, leading to a host of other complications.

Cystic Fibrosis Canada says Trikafta treats more than symptoms, instead targeting the specific genetic mutations that cause the severe lung disease.

Maysa Milligan, 10, spent the last two weeks of her summer break at Victoria General Hospital with complications of cystic fibrosis, according to her mom, Sarah Milligan.

"Over the summer she had to be hospitalized for treatments that if we had had access to Trikafta a couple of months earlier, [she] may not have had to have," Sarah Milligan said. "We may have been able to avoid those hospitalizations."

Milligan said she was elated by Wednesday's announcement, but noted that the journey has been long and frustrating as she watched the drug go through Health Canada's approval process and saw other provinces expand access before B.C. did.

In July, Alberta expanded access to the treatment drug for children, and other provinces such as Ontario have also made the move to expand coverage of Trikafta for the six-to-11 age group. Newfoundland and Labrador followed suit on Aug. 22, making B.C. the last jurisdiction to fund the drug.

Now that eligibility has been expanded in B.C., Milligan says they plan to apply as soon as possible. She said it may take a few weeks for Maysa's application to go through. 

As for 10-year-old Maysa, she says she was "very happy" at Wednesday's announcement. 

"I know that will change my life a whole bunch, but I do wish it could have been sooner because I'm still waiting and that's bad."

Trikafta is covered on a case-by-case basis that involves a patient review process and approval by a disease-specific clinical subcommittee.

Without funding, the drug costs about $300,000 a year and families are expected to pay out of pocket as it is not covered under the Medical Services Plan. 

The province said around 150 people in B.C. benefit from Trikafta PharmaCare coverage. It estimates 185 more people will become eligible under the expanded criteria.