Access to cystic fibrosis drug would save lives, says Nova Scotia woman

A Nova Scotia woman with cystic fibrosis says she has contemplated moving to Europe in a desperate attempt to gain access to a drug that is being hailed as a breakthrough.

Ana Dujakovic, 31, is pleading with the federal and provincial governments to speed up approval, and publicly fund Trikafta.

Trikafta has the ability to treat 90 per cent of cystic fibrosis patients.

Dujakovic is a registered nurse who is closely following international results of the use of the drug around the world. She saidTrikafta doesn't focus on treating symptoms, but instead the underlying cause.

'Literally been dying'

"It's really important that Canadians understand that we've literally been dying while other CFers in other countries have been thriving," Dujakovic said.

"Canadians with cystic fibrosis have had basically the worst access across a lot of countries."

Dujakovicis so desperate for the drugshe has contemplated leaving the country, calling herself a potential "medical refugee."

But now Vertex Pharmaceuticals, the manufacturer, has submitted Trikafta to Health Canada for approval.

Health Canada says the review is on a priority path that aims to finish the approval process within 180 days. If it stays on track, Trikafta could be cleared for use in Canada in June.

Dujakovic saidthis is a situation where every day counts "especially when we haven't been prioritized for a COVID-19 vaccine."

Dujakovic is joininga chorus of Canadians with cystic fibrosis who are advocating for urgent access to the medication.

One year ago, Chantelle Lindsay, another young Nova Scotian with cystic fibrosis, died after being denied compassionate access to Trikafta.

A recent study at Dalhousie University estimated the drug could reduce deaths by 15 per cent over a 10-year period. Dr. Sanja Stanojevic, who led the study, said many are comparing it to insulin for diabetes.

Drug is expensive

But Dujakovic is fearful that red tape will keep it out of reach even after Trikafta's approval. That's because it costs $300,000 a year per person.

Dujakovic saidunless provincial programs are prepared to cover the cost, no one will be able to afford it.

"There's a lot of Nova Scotians with CF who don't have private insurance because a lot of us can't work full time to get the benefits or work at all because we're too sick."

Health Canada says the Canadian Agency for Drugs and Technologies in Health is doing what's called an aligned review. That means it is examining whether it will recommend Trikafta receive provincial funding at the same time as the formal drug approval, which could also potentially speed up access to the medication.

In a statement, Nova Scotia's Department of Health and Wellness says it "welcomed" the fact that Trikafta was given priority review by Health Canada.

"We recognize that the cystic fibrosis community is anxious for access to new effective treatments, such as Trikafta," it said. "When all the approval processes are complete, N.S. will be in a position to consider funding Trikafta."

More than just cost to consider

Dujakovicknows the drug is expensive. But she said it will save taxpayers far more in the long run because it can drastically reduce hospital stays and transplants.

"I think too, when we think of the costsas well, we don't really think about what people can give back to their communities if they're able to go to work ... and reinvest in the economy."

Dujakovic saiddrug trials for Trikafta included her specific mutation, and she's convinced it would be life-changing for her.

"I have laryngitis right now because I coughed all night through my sleep. I just could not stop," she said of her current condition.

"It's really an exhausting disease. And I think people don't talk about the mental health effect of cystic fibrosis."