Vancouver Island family urges B.C. to quickly expand funding for cystic fibrosis drug

UPDATE — Sept. 7, 2022:  The B.C. government said on Wednesday afternoon that it had expanded eligibility to Trikafta to include patients aged six to 11 and those with a lung capacity greater than 90 per cent. The change goes into effect on Sept. 13.

The family of a 10-year-old Vancouver Island girl with cystic fibrosis says they are grateful B.C. children aged six and older will soon have access to a "transformational" drug, but it's not soon enough. 

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

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

"If we had access to Trikafta even three months ago, we might not be in here," Sarah Milligan said on the CBC's On the Island on Wednesday. 

Last year, Health Canada approved the high-cost treatment drug for adults. It was also approved for patients over the age of six in April this year, but B.C. has not yet approved funding of the drug for children under 12. 

For children 12 and older in B.C. 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. 

In B.C., cystic fibrosis patients age six to 11 are waiting on a final review to determine whether Trikafta is funded for younger patients.

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.

"Children in other provinces, their doctors are currently prescribing this drug to them but children in B.C. are waiting," Milligan said. 

Milligan says the sooner children with cystic fibrosis in B.C. have access to the drug, the sooner they can start to heal the damage done to their lungs and feel better.

"The damage that happens to their lungs is irreversible, and so the sooner they get access to these drugs, the sooner we stop the damage," she said.

In an email statement to CBC News, the Ministry of Health said the Canadian Drug Expert Committee issued final recommendations to expand the availability of the drug to people aged six to 11 in June 2021. 

The ministry is still reviewing those recommendations and awaiting recommendations from the province's Drug Benefit Council before making the decision to expand funding for Trikafta for younger patients.

"For the expansion of the eligibility to be approved, the B.C. Drug Benefit Council must first provide a recommendation. We expect this drug to be listed very soon," it said.