March 27, 2017 11:43 pm
Updated: March 27, 2017 11:46 pm

Cystic fibrosis advocates urge B.C. government to fund for ‘life-altering’ drug

WATCH: The group that represents the more than 4,000 Canadians suffering from cystic fibrosis says the B.C. government should provide funding for a life-changing medication. Rumina Daya reports.


Abby McFee takes up to 20 pills a day, the most expensive of which is Orkambi, a drug that she says has been a huge help in her battle with cystic fibrosis.

“It’s like $250,000 a year, so it’s not affordable at all,” she said.

The drug has been approved by Health Canada but the B.C. government recently decided it won’t be covered through PharmaCare.

“It’s frustrating for us because it’s a major advance in the therapy of cystic fibrosis,” Dr. John Wallenburg of Cystic Fibrosis Canada said.

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“We’re looking at about one in four patients who responds to the drug with a clinically significant improvement.

“For those individuals who are seeing the clinical benefit, it’s incredibly significant. It’s life-altering in certain cases.”

“This drug has been reviewed by the national Common Drug Review (CDR), which recommended the drug not be listed due to insufficient evidence to support efficacy of the drug,” a B.C. Ministry of Health spokesperson told Global News.

READ MORE: Research advancement made to treat bacteria found in cystic fibrosis

The province also noted that the drug isn’t covered as a benefit anywhere in Canada.

Cystic fibrosis, which is caused by a genetic mutation, causes thick mucus to build up in the respiratory system, leading to frequent infections that scar the lungs and reduce the ability to breathe. Mucus can also block tubes from the pancreas to the small intestine, requiring patients to take multiple digestive enzymes in order to absorb nutrients.

McFee’s condition has advanced so much that the drug company is covering the $250,000 yearly price tag for her medication, which she couldn’t afford otherwise.

“Because the point of it is stop to lung function loss, it’s great for me, but other people should have the same access to it,” she said.

– With files from Rumina Daya and The Canadian Press

© 2017 Global News, a division of Corus Entertainment Inc.

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