Kimberly Evans has been waiting for months to see if medication her daughter needs will finally become available to her.
Cassidy Evans, 10, has been living with cystic fibrosis.
A drug called Orkambi has been known to slow the fatal disease’s progression through the lungs and digestive system by attacking the genetic defect at the root of the condition.
After waiting more than nine months to find out if the revolutionary medicine would be covered by the province, Evans was told last week a review agency will not recommend that the Government of Saskatchewan fund the drug.
“As a parent, hearing this news last week was absolutely devastating,” she said. “We spend hours a day doing life-sustaining treatments for her that are essentially just band-aiding her symptoms of cystic fibrosis.”
Although Orkambi is approved for use across the country, the Canadian Agency for Drug Technology and Health (CADTH) recommended last week that provinces not fund the drug.
A Saskatchewan Ministry of Health spokesperson sent an emailed statement to 650 CKOM saying the province would be following the lead of CADTH, but will also seek out specialist’s opinions.
“Cystic fibrosis is a terrible disease that many Saskatchewan patients and their families struggle with,” the statement read. “Like other provinces, Saskatchewan bases its drug funding decisions on reviews done by the Canadian Agency for Drugs and Technology in Health.”
Evans said the drug could do a lot for Cassidy.
“This drug is showing to change at a cell level what could happen in her body that her body currently can’t do.”
Evans said the drug would cost her around $240,000 a year, but added that if the province were to make a bulk purchase themselves, or combine a large purchase with other provinces, that price tag would drop to $100,000.
This could be part of a bigger problem for those suffering from cystic fibrosis, as Evan’s thinks Vertex Pharmaceuticals, the creator of Orkambi, will not submit other potentially life-saving drugs for review.
She said she plans to speak next month at the Saskatchewan Legislative Assembly.
“I don’t want my daughter’s life to be a headline because something wasn’t done now.”
-With files from 650 CKOM’s Brent Bosker