Advocates in the cystic fibrosis community are celebrating after the B.C. government announced it will cover the high-cost treatment drug Trikafta.
Jocelyn Joyce, who has an 18-year-old son with cystic fibrosis, has been advocating for provincial coverage of the drug.
"I'm beyond elated. I'm on Cloud 9," said Joyce.
Cystic fibrosis affects approximately 500 people in B.C., according to the provincial government. It is a genetic disease that largely affects a person's lungs, but also other organs like the pancreas, liver, kidneys and intestines.
Dr. Mark Chilvers, medical director of Cystic Fibrosis Care B.C., says provincial coverage of Trikafta will improve life expectancy and quality of life for his patients.
"It's a very dramatic medication. It really, truly, is a game changer for patients with cystic fibrosis," Chilvers said.
"There are many patients who have been assessed for a lung transplantation and when they get started on Trikafta, they've actually improved and come off the transplant list."
'It's just a miracle'
Joyce says her son Steven started taking the drug — which costs roughly $300,000 a year at its list price — last year through a compassionate care program.
"His world completely changed 180 degrees," she said.
His lung function and BMI improved considerably and he is no longer dependent on antibiotics, she says — and, most crucially, he no longer requires frequent hospitalizations up to twice a month.
"Now that he's with Trikafta, it's almost been a year, he's attending university full time and he's working a full-time job. It's just a miracle," Joyce said.
She said it was difficult to see other parents and patients struggle when a drug like Trikafta could make such a huge difference.
"When Steven gained access [to the drug], we regained hope that had been lost. I thought it was really important to make sure I worked with our team of advocates to make sure that nobody was left behind," she said.
With Tuesday's announcement, B.C. joins Alberta, Ontario and Saskatchewan in covering Trikafta for cystic fibrosis treatment.
The B.C. government has also announced a new provincially co-ordinated model of care for cystic fibrosis patients. Chilvers said it will help support all patients with cystic fibrosis in B.C. wherever they live and improve access to care.
Thanks to medical advancements, people with cystic fibrosis are surviving longer than before. In 2019, the median age of survival for people with cystic fibrosis in Canada was 57.