The Yukon government will start paying for a lifesaving drug for a young girl with cystic fibrosis in December.
Larissa Rueckenbach has an extremely rare variant of cystic fibrosis called the G551D strain. The genetic disorder causes mucus to build up in her lungs, painful arthritis aches and cystic fibrosis diabetes.
But a pricey drug, Kalydeco, has been shown to help people like Larissa. While it can’t reverse the damage that was done, the drug is able to help stop the disease in its tracks.
Larissa’s family went public with their plea for help this summer. The drug costs about $350,000 a year.
They got Vertex Pharma, the manufacturer, to add their daughter to the compassionate care program back in early June.
Even in that short period of time, Larissa’s mother, Heike, has already seen improvements in her daughter.
“Her lungs are clear, she’s gaining weight, she’s already gained four kilos,” she said today.
While Larissa, 13, was in the compassionate program, the country’s provinces and territories were negotiating with the drug company to get the pills covered under government health plans. On the negotiating team was Yukon Health Minister Doug Graham.
Later in June, the governments announced they had reached a deal on the drug but still had to work out some details.
Once all the work is done, it’s up to the individual jurisdictions to decide whether to add the drug to their coverage.
The decision is important, Heike said, because the compassionate care program was only designed to be a short-term stop-gap while the payment deal was being worked out, she said.
Now the Yukon is ready to take over covering the cost for Larissa.
“Some think Kalydeco is a cure. It’s not. It has the potential to reduce the need for other CF therapies and that to us is a good thing too,” Graham said.
“We think that anything that’s going to benefit those people that suffer from CF is worth paying for, even at the price that we’re paying.”
That price is a steep one and the government will be paying 100 per cent.
The company “really didn’t budge much on the price when we discussed it with them, but we finally decided to go ahead and the reason we did it is because the rest of Canada was doing it at the same time,” Graham said.
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