Photo/Facebook
A 31-year old Victoria woman with cystic fibrosis says that for the first time in months she can look to the foreseeable future with a sense of certainty and relief.
Lilia Zaharieva learned on Thursday that she’s been given compassionate access by manufacturer Vertex Pharmaceutical to a drug called Orkambi.
“Today I get to share a victory with you,” she wrote on Facebook to the many who had championed her cause.
“Thank you for keeping this story, and myself by extension, alive! You got me to this turning point, and I could not be here without you.”
The UVic student started taking the drug in September 2016 when it was approved by UVic’s insurer.
She credited it with giving her a quality of life while living with cystic fibrosis.
But a year later, she was told the insurer would no longer cover the $250,000 per year price tag for Orkambi,
“I got an email on September first that changed my life and put me in a fight for survival,” she wrote.
She tried but failed to convince the province to cover the cost of the medication.
Zaharieva says while she may have won her battle for now, it is only one victory and she underlines that is a temporary one.
“We need to keep fighting… for everyone that stands to benefit from Orkambi,” she wrote.
“We can’t let up.”
She says 23 other people in B.C. could immediately benefit from the drug.
Still, she says she is grateful to finally be able to share good news.
“For the first time in months, I’m not counting pills.”
Ben O'Hara
