Tim Vallillee

Tim Vallillee of Wilmot, N.S., says getting access to cystic fibrosis drug Kalydeco is like winning the lottery. (Elizabeth Chiu/CBC)

An Annapolis Valley man with a rare form of cystic fibrosis is finally getting the expensive medication that he hopes will change — and prolong — his life.

"I won the lottery, I really have. The medical lottery, I won it," says Tim Vallillee of Wilmot, N.S.

Kalydeco has been hailed as a breakthrough medication, but costs $300,000 a year for the average patient and is not funded by the Nova Scotia government.

That’s made it out of reach for most of those who have a rare cystic fibrosis mutation called G551D. Vallillee is one of them; his health has been deteriorating and his lung capacity is at just 40 per cent.

But Vallillee is now taking Kalydeco, thanks to drug maker Vertex Pharmaceuticals Inc., which has accepted him under their compassionate care program and is giving him the medication for free.

"The number one thing on my bucket list is just to chase my son and not run out of air, so I can catch him," Vallillee said.

The provinces have been locked in negotiations with the drug maker to try and bring down the price so other Canadians can benefit.