B.C. woman with cystic fibrosis pleads for coverage of life-enhancing drug
A University of Victoria grad student is calling on the B.C. government to cover a cystic fibrosis drug that could change hundreds of lives, including her own.
Lilia Zaharieva says her life line is running out as she grapples with the disease, which creates a building of thick mucus in the lungs and digestive system, making it difficult to breathe.
A new drug ‘Orkambi’ is designed to increase lung function for people diagnosed with cystic fibrosis.
“This is a drug instead of treating a single symptom, it has the capacity to impact multiple different systems and multiple organs,” said cystic fibrosis chief scientific officer John Wallenburg.
But it comes at a steep cost, a year's supply is a quarter million dollars.
The university’s student society had to change its health plan this year because of soaring premiums, and the revised plan no longer covers the cost of the drug.
Zaharieva says she only has about 18 days of the drug left.
With the backing of her professor Jim Anglin the student is calling on the province for help.
“It’s giving her a sense of well-being and I think quite likely will extend her life," Anglin said. "I think it’s time now for the province to stand up and support Lilia."
Despite it being approved by Health Canada, the Common Drug Review decided not to endorse the drug.
B.C.’s new health minister stands by the ruling.
“No province supports the drug, it’s up to the manufacturer in this case to make the case and the manufacturer nationally in Canada and another jurisdiction failed to make the case,” Adrian Dix said.
The minister also pointed out the huge cost, but Zaharieva and others with cystic fibrosis have heard that argument before.
“The cost of a double lung transplant is not insignificant either,” Zaharieva added.
The Victoria woman is pleading with the province for a special exemption, hoping there is a way to continue this new lease on life.
“I can accept that I've had a shorter life, but I really want the chance to make something of myself,” she said.
With a report from CTV Vancouver Island's Chandler Grieve