A deal has been reached with a drug company to fund expensive medication for people with a unique form of cystic fibrosis.
Vertex Pharmaceuticals Inc., which makes the drug Kalydeco, announced late Monday that it had officially reached an agreement with provincial and territorial governments to enable public drug plans to cover the cost of the drug.
The medication received attention in the Yukon after a local teen, Larissa Rueckenbach, went public with her need for the drug.
Rueckenbach has an extremely rare variant of cystic fibrosis called the G551D strain. The genetic disorder causes mucus build up in her lungs, painful arthritis aches and cystic fibrosis diabetes.
The medication has been called a miracle drug for this specific type of cystic fibrosis. It can’t reverse the damage already done, but studies show it has the potential to stop CF progression in its tracks.
After the public attention, Rueckenbach was put on the company’s compassionate care program, which will cover the cost of the drug for her.
The company is not revealing the negotiated price for the drug.
Rueckenbach’s family has said she was facing a bill of $349,000 a year to save her life.