Lilia Zaharieva says living with cystic fibrosis meant thinking her life had no future.
Over the space of one year, Zaharieva said her lung functioning declined 10 per cent. The expected rate of decline for a person with the disease is one to two per cent.
"It's quite terrifying," she told All Points West host Jason D'Souza. "I was losing the ability to do so many of the things that make me who I am. To be out in the world, to be productive, to be connecting. That's the most difficult part: to not be able to participate in my life."
Last year, the fourth-year student at the University of Victoria says she was put on the drug Orkambi — which targets the underlying causes of cystic fibrosis caused by a specific gene mutation — not just the symptoms. Her quality of life dramatically improved.
But Orkambi is expensive, costing about $250,000 per year per patient and B.C.'s provincial health plan does not cover it.
And on Sept. 1, her student coverage for the drug ended.
Zaharieva said her doctors have said that without it, she may have as little as two years left to live.
I'm really not sure what to make of this. She believes the drug is keeping her healthy. Experts say there is no clinical proof, in general terms, that the drug works.
"In early 2017, there was a large and unprecedented increase in the utilization of prescription drug benefits and the [UVSS] plan faced unsustainable cost increases," wrote Mackenzie Cumberland, the students' society's director of finance and operations.
"With this information, the 2016/2017 UVSS Board of Directors made the decision to adopt a provincially-managed formulary, B.C. Fair Pharmacare, which is used by most student health plans in B.C.
"This was necessary in order to maintain a health and dental plan at all."
Cumberland said it is impossible for the students' society's medical plan to pay for Orkambi, but supports provincial coverage of the drug.
Also, what's with that spike above? What would cause that?
Edited by VicHockeyFan, 06 October 2017 - 02:52 PM.
<p><span style="font-size:12px;"><em><span style="color:rgb(40,40,40);font-family:helvetica, arial, sans-serif;">"I don’t need a middle person in my pizza slice transaction" <strong>- zoomer, April 17, 2018</strong></span></em></span>