Yukon girl's family fights for $349K cystic fibrosis drug

A Yukon family is trying to access a new, and extremely expensive, drug for their daughter, who has a rare form of cystic fibrosis.

Territorial, provincial health ministers negotiating lower price with manufacturer

13-year-old Larissa Rueckenbach of Yukon has a rare form of cystic fibrosis and is trying to access a new and extremely expensive drug to treat it. (courtesy Heike Rueckenbach )

A Yukon family is trying to access a new and extremely expensive drug for their daughter, who has a rare form of cystic fibrosis.

Heike Rueckenbach's 13 year old daughter, Larissa, has a rare mutation of the disease. About 100 people in Canada have this form of cystic fibrosis.

Cystic fibrosis is a genetic disease that fills a person's lungs with mucus, which needs to be cleared every day to survive.

The new drug Kalydeco, approved by Health Canada in 2012 to treat this form of cystic fibrosis, costs about $400 a pill. Rueckenbach's daughter's treatment would cost about $349,000 a year.

The drug is not part of the territorial drug plan. But Rueckenbach says it could be a life saver for her daughter.

"We're hoping that once we have access to this medication she will be able to breathe," she said.

"She will be able to run again and she loves to go to school. Right now she's missing half of the time. She can't move most mornings so it would . . . It's a life-saving medication that we are asking for."

Yukon health minister Doug Graham and Alberta health minister Fred Horne are leading discussions with the drug company on finding affordable pricing for those families that need the drug. The provinces, led by Alberta, have been negotiating for more than a year with the drug maker to lower the price.  

Graham and Horne met last week with representatives of the drug company, Vertex Pharmaceuticals. The meeting included discussion about pricing of the drug. The ministers say there was no resolution following last week's meeting, but talks with Vertex will continue.  

A fund-raising walk will be held this weekend for Rueckenbach's daughter and two other Yukon children with cystic fibrosis.

The "Great Strides Walk" will be held Sunday at noon at Rotary Peace Park in Whitehorse.

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