Maritimers with cystic fibrosis closer to better access to life-changing drug

HALIFAX -

After fighting for it for years, Maritimers with cystic fibrosis are getting closer to having better access to what many call a life-changing drug treatment.

As of Friday, all three Maritime governments say they will cover the expensive drug, called Trikafta, under provincial health plans. 

The announcement that Nova Scotia plans to cover the drug through its provincial plan is potentially life-changing for 31-year-old CF patient Ana Dujakovic.

Dujakovic says she was "ecstatic" when she heard the news. That news came unexpectedly Thursday, during Question Period at Province House.

Former Liberal Health Minister Zach Churchill posed the question to the new PC Health Minister, Michelle Thompson.

"Can the minister provide an update on Trikafta?" said Churchill.

"The Trikafta drug will be added to the Nova Scotia formulary," replied Thompson, "it was approved and will be added in November."

"This is like the best new therapy for CF, it's like insulin for diabetics," says Dujakovic, "that's the level of importance that I think it is for us."

Trikafta targets the genetic mutation that is the root cause of the fatal disease.

The treatment is expensive, costing more than $350,000 a year per patient.

Many private health insurance plans, including Dujakovic's, don't provide coverage.

CF patient Stefan Strecko fought to get Trikafta through private insurance and eventually succeeded.

"I've been on it for it about six weeks now and I feel incredible," he says, "I can't even really describe how good it makes me feel."

Strecko says the medication has eliminated symptoms and improved his lung function.

He hopes this announcement means the drug will become available to anyone who needs it.

"And start giving people the opportunity to live real lives and focus on their futures," he adds.

Friday, the government of Prince Edward Island announced it will also start covering Trikafta, starting Nov. 1. 

A spokesperson for New Brunswick's health department also confirmed to CTV News the medication will be added to its provincial drug plan sometime this month. 

But there are no details yet on exactly what that will look like, and who will be eligible – important details for CF patients.

"Because right now CADTH (Canadian Agency for Drugs and Technologies in Health), its recommendations are very good, but it does not include all cystics and that's not fair," says CF patient Tim Vallillee.

CADTH is a national organization established by the federal government that advises healthcare decision-makers. In its public recommendations on the drug, the agency suggested only people with less than 90 percent lung function should start Trikafta.

Nova Scotia's Minister of Health would only say Friday that more information will be revealed when the drug is officially added to the provincial plan.

"I am confident though," says Thompson, "that given that the work that's been done previously that people will find themselves within the criteria."

For those who live with CF, coming this much closer to coverage, is bittersweet though, knowing some others died of CF while waiting.

The fight for Trikafta made headlines in Nova Scotia after 23-year-old Chantelle Lindsay died after being denied compassionate access to the drug while she was in hospital.

"That part, it breaks my heart," says Vallillee.

Vallillee and others hope getting access will help prevent any more of that heartbreak.