Mother of nine-year-old with cystic fibrosis pushing for Orkambi coverage
Kimberly Evans says she feels like she’s failing her daughter.
Her nine-year-old, Cassidy, has cystic fibrosis, but the family can’t afford a new $250,000-per-year drug and no province in Canada covers the medication.
“It just feels like there’s a glitch in the system, and to have it be there — so close but not be able to actually give it to her — I feel like I’m failing her. That’s what it feels like,” Kimberly said.
The mother is pushing for the medication, Orkambi, to be covered. The drug is approved by Health Canada and Kimberly says Cassidy’s doctor has prescribed it.
“To not have access to it is heartbreaking,” Kimberly said.
Orkambi targets the defect that causes cystic fibrosis, and in some cases the medication has slowed the progress of the fatal genetic disease.
The Canadian Drug Expert Committee reviewed Orkambi and recommended it not be funded, stating the improvements the drug made in cystic fibrosis patients were not statistically significant.
Saskatchewan’s Health Ministry followed the committee’s advice.
“They're very difficult decisions around whether a drug has enough effectiveness to be added to the public formula to be paid for by the drug plans across the country, and so we do leave it to the experts when making those decisions,” said Asst. Deputy Minister Mark Wyatt.
Cystic Fibrosis Canada is urging the provinces to reconsider coverage, claiming Orkambi is making drastic improvements on patients’ lives.
The group says the CDEC experts are wrong.
“The rationale for turning it down was poor. It was a flawed decision and, based on that flawed decision, governments aren’t even sitting down with the company to negotiate the cost, which I understand could be an issue,” John Wallenburg, Cystic Fibrosis Canada’s chief scientific officer, said.
The Ministry of Health said cost is not the most important factor in the coverage decision. It’s hoping the pharmaceutical company behind Orkambi will re-submit any new information that could change the ministry’s decision.