Alberta expands coverage for cystic fibrosis drug

As of Sunday, more Albertans with cystic fibrosis will have access to what's described as a life-changing drug.

It's a step forward but there's a long way to go, says advocate

The Alberta government has expanded coverage for cystic fibrosis drug Kalydeco. (Kalydeco website)

As of Sunday, more Albertans with cystic fibrosis will have access to what's described as a life-changing drug.

On Saturday — rare disease awareness day — the province announced it was expanding coverage for Kalydeco, starting March 1.

The twice-daily drug, which goes by the generic name ivacaftor, can cost about $300,000 a year.

Kalydeco was approved in 2014 for patients six years and older with cystic fibrosis and one specific genetic mutation. Coverage is now available for children over six with cystic fibrosis and one of eight genetic mutations, as well as adults with one specific genetic mutation.

"More people will be healthier who have cystic fibrosis," said Jeanette Demers-Weir, the regional executive director for Alberta with Cystic Fibrosis Canada.

"It's certainly a step forward for us, but we have a long way to go still."

Around 600 people have cystic fibrosis in Alberta out of around 4,300 in Canada. Demers-Weir said around four to five per cent of people with CF will be eligible to take the drug.

The genetic disease, which mostly affects the lungs and digestive system, has no cure and is often fatal.

In December, hundreds of Albertans sent letters to Health Minister Tyler Shandro calling for cystic fibrosis drugs to be made more accessible and to support the development of a federal strategy for rare diseases. 

Demers-Weir said while the expansion of coverage is fantastic, there are still drugs desperately needed in Canada like Trikafta, which could help around 90 per cent of CF patients but hasn't been submitted for approval by Health Canada.

"Because we don't have a rare disease strategy in Canada, it's difficult to get these drugs," she said.

"That's exactly what's holding up a lot of the medication."

Details of the coverage eligibility for Kalydeco are available on the province's website.

With files from Terri Trembath


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