Price of cystic fibrosis drug Kalydeco could drop with deal

An expensive drug hailed as life-changing for people with a rare strain of cystic fibrosis is a step closer to being available to people in Nova Scotia.

Before now, Kalydeco was selling for roughly $300,000 a year per person. The province says it has reached a tentative agreement with Vertex Pharmaceuticals, the company that produces the drug.

Health Minister Leo Glavine says it’s a result of efforts by Alberta and the Northwest Territories to negotiate a cheaper price. He said the Pan-Canadian Pricing Alliance was also vital.

Glavine says it's taken nearly a year to get to this point.

“I was getting a little restless,” he said.

“For a number of Nova Scotians, even though small, this going to potentially make a phenomenal difference in their lives. It truly is hard to put a price on. We now have a better price. Our province will look at the fine details of the agreement and step up and support that group of CF suffers.”

Glavine says there are still the fine details to be examined before the agreement is complete, but he's confident a final deal will be reached fairly quickly.

Breakthrough drug

Kalydeco was first approved by Health Canada in 2012. Cystic Fibrosis Canada has called the drug a breakthrough "because it is the first drug to address the underlying cause of cystic fibrosis." It said Kalydeco helps improve lung function and lower sweat chloride levels.

Tim Vallillee of Wilmot is thrilled by the news.

He started taking Kalydeco for free three weeks ago under Vertex’s compassionate program. He is one of only about 100 Canadians with a rare mutation of cystic fibrosis — G551D — that responds to the drug.

His health has been deteriorating and his lung capacity was at 40 per cent.

“I feel like I’ve got probably at least double the lung function that I had not three weeks ago. It’s such a subtle thing for me, but it’s so amazing how great this drug feels. I hope every province and territory in this beautiful country will step up and make this available for every cystic because it is absolutely life-changing and you won’t regret,” he said.

Vallillee says he enjoyed racing his son across a field in Kentville on Saturday night.

“Pre-Kalydeco I would never have even thought of doing that,” he said.

Nova Scotia’s health department estimates eight people in the province have the rare form of cystic fibrosis.