WATCH: A 30-year-old UVic student with Cystic Fibrosis, says she can’t get the drug that has changed her life. It costs too much and though it could dramatically improve the standard of living for 200 people in BC, the government won’t pay for it. Isabelle Raghem reports.
“I remember opening it and my heart just fell to the ground,” said UVic student Lilia Zaharieva.
That’s how she describes the moment she got the email September 1st that changed everything. Her insurer told her they would no longer cover Orkambi, the drug she credits with giving her a quality of life while living with cystic fibrosis.
The 30-year-old started taking Orkambi September 2016 when UVic’s insurer approved the medication.
“I knew what a life-changing moment that was,” she said Thursday, “I thought getting my child in youth care degree from UVic was really something I wanted to do before I died. I wanted to walk across that stage. Since I’ve taken Orkambi, I was planning to apply to grad schools and I was wondering how I can give back to the world.”
But now, her insurer says it will no longer cover of the drug due to its $300,000 price tag. She’s asking the new government cover it.
“Questioning what life would be like if I lost Orkambi it something quite literally that’s kept me up at night.”
About 200 people in B.C. could benefit from the drug. That would be a cost of $60 million if the province covered all of them. Thursday, the Minister of Health said two federal groups reviewed the drug and recommended it not be covered.
“The manufacturer nationally in Canada and in other jurisdictions failed to make the case for the therapeutic benefits it wasn’t just a financial case, it was a therapeutic case as well,” said Adrian Dix.
Professor Anglin who has worked with Zaharieva for years insists the province needs to step in.
“The government had a $2.5 billion surplus last year. Help these people now and then work out what the long term solution should be.”
“You’ve got someone that’s taken a drug and stable on it, it seems cruel to withdraw coverage,” said Alan Cassels, author and drug policy researcher.
He explains the decision for coverage isn’t simple.
“Clearly there are gonna be people that are gonna benefit from new treatments and some of those should have access but if you opened up the gates far open that claims they need a new particular drug, it would bankrupt the health system in a heart beat.”
Zaharieva’s message to the province.
“The feeling of having freedom to live my life, to dream of a future and even to just breathe and exist it’s worth anything, it’s not something I’m willing to give up.”
With 18 days left until she runs out of the drug, she says she’s far from giving up the fight.