A North Vancouver family is considering packing their bags and moving back to Ontario if a life-changing drug for cystic fibrosis (CF) is not made available soon for their 10-year-old son.
Oliver Narciso’s lung function began to worsen suddenly last year. He spent two weeks in the hospital this summer undergoing tests, according to his mother, Miriana Narciso.
Trikafta, which has been billed as a “transformational” for CF patients, is conditionally funded in B.C. for children 12 and older. A final review will determine whether it is funded for younger patients.
“We just want our child to get better and to get this medication so he can live his life to the fullest,” Miriana told Global News on Wednesday.
“As a parent you want to do everything you can for your child to get them healthy and you can’t. It’s like this carrot dangling in front of you and it’s out of reach. It’s so frustrating.”
Cystic fibrosis is a progressive, 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.
It affects more than 4,300 Canadians and an estimated 40 to 60 children in B.C. under the age of 12 who “are waiting for Trikafta,” according to Cystic Fibrosis Canada.
“It is the single greatest innovation in the history of the disease,” said Kim Steele, director of government and community relations for CF Canada.
“It is getting people who were on the lung transplant list, off the lung transplant list, and the goal is to have people as young as possible start this drug to prevent or slow the progression of the disease.”
Trikafta targets the genetic mutations that cause cystic fibrosis. It was approved by Health Canada for patients over the age of six in April this year.
Research published in the peer-reviewed Journal of Cystic Fibrosis in August 2020 found that if Trikafta were introduced early to CF patients, it could reduce the number of individuals with severe lung disease by 60 per cent by 2030. Even earlier introduction could reduce deaths by 15 per cent and improve the median age of survival by 9.2 years over a 10-year period, the study found.
In July, the Canadian Agency for Drugs and Technology in Health recommended public drug plans cover Trikafta for all eligible Canadians six and older, but because B.C. has an additional review process, it has lagged behind other provinces and territories in funding the drug for the six to 11 age group.
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In a written statement, the B.C. Ministry of Health said the government is “working quickly” to improve quality of life for CF patients and their families, and expects Trikafta “to be listed very soon.”
The Narciso family is optimistic that will happen in the next two months. They cannot afford the monthly cost of the drug — $25,000 — and Oliver is waiting while his condition declines.
“(CF) robs kids of their childhood profoundly,” said his father Nelson. “The longer you wait the more damage there is … sometimes those things like lung function, when you lose it you don’t get it back.”
Miriana said she hoped the drug would be funded for Oliver’s age group before the start of school and the accompanying increase in exposure to COVID-19 and other respiratory illnesses that could hospitalize him. The family is standing by to return to Toronto if needed.
“Oliver has to take countless medication, enzymes. He has to do physiotherapy twice a day, which takes two hours,” she said.
“Trikafta can help cut out some of those medications and just give him an easier childhood.”
Meanwhile, Oliver said his ability to breathe changes day by day. He described CF as “hard,” “annoying,” and “time-consuming,” resulting in “many pokes” at the hospital over his lifetime.
“I want (Trikafta), it could change my life and everybody else who has CF,” Oliver told Global News. “I know it’s supposed to be life-changing, it can improve your lung function, it can just make your life a whole lot easier.”
He wishes summer would last longer, he added, as he couldn’t “do a lot of stuff with an IV in” his arm at the hospital in July.
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