Nova Scotia

Nova Scotia to cover cost of 'transformational' cystic fibrosis drug

Nova Scotians with CF have long lobbied to have Trikafta added to the formulary.

Trikafta is potentially life-saving for people with the disease, but comes at a hefty cost

Ana Dujakovic believes Trikafta will give her the ability to work full time and plan her future. (Submitted by Ana Dujakovic)

Ana Dujakovic can't wait to tell her mom and dad news Nova Scotia's minister of health casually dropped in the middle of Thursday's question period — that the province will soon cover the cost of Trikafta, a drug she and others like her desperately want.

"They've been with me through this whole thing ever since I was born," said Dujakovic when reached by CBC News to tell her what the minister had said.

"It's been a huge source of excitement, but also frustration. And, you know, the closer you get sometimes, the longer it feels to the finish line."

The 31-year-old mental health and addictions nurse has been fighting for years, alongside others, to convince the Nova Scotia government to list Trikafta in order for the 180 Nova Scotians with cystic fibrosis to gain access to the potentially life-saving but expensive drug.

A life-changing drug

Cystic Fibrosis Canada describes Trikafta as "transformational," saying it can treat up to 90 per cent of Canadians with the genetic disease, which can be fatal. There is no cure for cystic fibrosis, which can affect the lungs and digestive systems of children and adults.

The list price for a month-long supply of Trikafta is roughly $23,500, according to the Health Department. It won't say how much it is paying for the drug because negotiations are underway with the manufacturer.

Dujakovic said waiting to find out if the province would cover the drug has been tough.

"There's been a lot of mental health struggles just getting to this point. Getting up every day and doing the [cystic fibrosis] treatments to stay healthy enough to try to get access to this drug," she said. "It's been a real battle."

'Surreal feeling'

For Jeremie Saunders of Halifax, the news is "surreal." The 33-year-old is part of the team behind the Sickboy Podcast, which in part chronicles Saunders's life with the disease.

Although he has never taken Trikafta, Saunders said from what he has read, it will have a significant effect on his lung function, the sensation of breathing and the way he digests food.

He said the drug will also increase his life expectancy, which has been a running joke on his podcast.

"I might need to speak with, like, a financial adviser to consider how I should be planning for maybe retirement, which is not something I ever thought would be something that I would experience," Saunders quipped. 

Saunders said he knows the decision by the province will be controversial because of the cost of the drug, but it makes him happy to know children with cystic fibrosis will now have access to it.

Minister hopes for quick access

Health Minister Michelle Thompson said the plan was to make it available to people with cystic fibrosis as quickly as possible.

"There [are] a number of issues that we have to work through behind the scenes in order to get it on the formulary," Thompson told CBC News.

"We do expect that process to be wrapped up by the end of November."

Trikafta, which costs roughly $300K a year at its list price, is seen in an undated handout photo. Experts say the drug is life-changing for people with cystic fibrosis. (Cystic Fibrosis Canada/Handout/The Canadian Press)

Access to the drug can't come fast enough for Dujakovic, who has been forced to work part time because of her struggle to breathe and the time she has to put in with treatments to clear her lungs every day.

"I'll probably be able to pick up a lot more hours at work, because I just can't work more without sacrificing my health," she said, adding that the drug will likely have mental health benefits, as well.

"I think that everyone will just feel this huge weight has been lifted off their shoulders, and I think there's a sense of hope and optimism."

Dujakovic said she and other people with cystic fibrosis are reluctant to plan for the future given it is so uncertain.

"Some people have been wanting to have children," she said. "They can have children now."

With files from Maritime Noon


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