$300K cystic fibrosis drug might get coverage in N.S. soon

Nova Scotia’s health minister said if the provinces can't strike a deal with the makers of an expensive cystic fibrosis drug to drop the price then he’ll direct his department to find a way to get the drug in the new year.

Kalydeco, which treats cystic fibrosis, has been hailed as a breakthrough, but it costs $300,000 per year.

Leo Glavine's comments come after two Nova Scotian families told CBC News their lives are at risk without the drug.

Tim Vallillee of Wilmot, said Kalydeco could help him live healthier and longer. It was approved by Health Canada in 2012. But the treatment is $400 a pill.

Carys Nurse, 7, also has a mutation of the deadly genetic disease that can be treated using Kalydeco. When the of Middle Sackville girl’s mother, Stacey, was laid off from Fisheries and Oceans Canada due to budget cuts, she also lost her drug plan.

“We want to do what's right for this family and Tim Vallillee whose lives are literally on the line,” said Health Minister Leo Glavine.

Since April the provinces, led by Alberta, have banded together negotiating with the drug maker to lower the price.

But after eight months there’s still no deal. Glavine said Nova Scotia may end up buying the drug on its own.

“I'm prepared very early in the new year to have the department look at this if we don't have a response through Alberta's ask,” he said.

"It is an extreme cost, but we're also talking about a life and how do we put a price on a life."

The health department estimates eight Nova Scotians have this rare form of cystic fibrosis.

Providing the drug to them would cost nearly $2.5 million a year.

Glavine said he will ask his department to look very closely at the budget process to make this money available.

Precedent setting

Stacey Nurse said their family knows it's a big budget item, but it gives them hope.

“Before Christmas that’s great,” she said.

But health law lawyer Matthew Herder said he's worried the province has set a precedent.

“If you set a price, even though that price might not be a good reflection of how well the drug works or how much health impact it has on a population, that we might buckle under pressure and agree to the price you’ve set rather than something we can afford,” he said.

Kalydeco would be the most expensive drug covered by the province under its formulary.

It’s triple the cost of the next most expensive drug, Lenalidamide, which costs $90,000 per year. It’s used to treat about 10 patients in Nova Scotia with multiple myeloma.