Manufacturer to provide life-changing cystic fibrosis drug to UVic student
A University of Victoria student with cystic fibrosis who has fought for a costly, life-changing medication is getting a helping hand from the drug's manufacturer.
Lillia Zaharieva took her campaign public last September after a university medical insurance plan cut off her access to Orkambi, made by Vertex Pharmaceuticals, which comes with a hefty price tag of about $250,000 for a year's supply.
She then issued a tearful plea to the province asking them to cover the drug, which can slow disease progression and increase lung function in CF sufferers.
The drug is approved by Health Canada but is not covered under provincial health insurance.
Despite that, B.C. Health Minister Adrian Dix said he stood by a Common Drug Review ruling not to endorse the drug.
But Zaharieva's campaign for coverage didn't fall on deaf ears. On Thursday, Vertex told her it would offer her compassionate access to Orkambi so she can lead a normal life.
"I'm so happy, last time I was on this channel I was crying and devastated and I was counting pills," she told CTV Vancouver Island. "It was even worse when I was so scared that I didn't have the courage to count pills. The feeling of safety that I have, the feeling that I'm not taking my breath for granted is a feeling like I can't even describe."
The drug company says it will get Zaharieva the dose she needs, but stressed it's only a temporary fix.
That's why Zaharieva says she's not backing down from her fight quite yet.
"What's next is to keep writing to the MLAs and writing to minister Adrian Dix to ask him to expedite the approval process for this drug and to grant compassionate access for Melissa Verleg," she said, referencing a Vernon mother who is also fighting for coverage of the drug.
Vertex says it still needs to negotiate a fair price for Orkambi with the province and the Canadian Pharmaceutical Alliance.