Yukon girl to get $349K cystic fibrosis drug from manufacturer

A Yukon teenager with cystic fibrosis will receive an expensive life-saving drug after the manufacturer agreed to cover the cost.
13-year-old Larissa Rueckenbach of Yukon has a rare form of cystic fibrosis and a new and extremely expensive drug to treat it is not yet covered by the territorial health plan. The manufacturer has now agreed to provide it to Larissa under its compassionate care program. (courtesy Heike Rueckenbach )

A Yukon teenager with cystic fibrosis will receive an expensive life-saving drug after the manufacturer agreed to cover the cost.

Larissa Rueckenbach, 13, has a rare type of cystic fibrosis. Health Canada recently approved a drug called Kalydeco to treat her form of the disease, but a year's worth of treatment would cost $349,000.

Kalydeco is not yet covered under the Yukon Health Plan, as the provinces and territories are negotiating with the manufacturer, Vertex Pharmaceuticals, to lower the price. 

Larissa's mother, Heike, was preparing to deposit money from a recent fundraising walk, when the director of the cystic fibrosis clinic in Vancouver called her.

"He called and he said he's got some awesome good news," she said. "Larissa will be able to get on the compassionate care program and she will shortly be able to start Kalydeco."

Rueckenbach says this was the third time Larissa's doctors applied for the program. Under the Compassionate Care Program, the drug company covers the cost for people in critical condition. Rueckenbach says her daughter will be on the drug in a couple of weeks.