Saskatoon father celebrates province's decision to increase coverage of cystic fibrosis drug

·3 min read
The Nechvatal family of Saskatoon runs a basketball fundraiser for cystic fibrosis every year. The two boys Dominic, left, and Benjamin, front, live with the disease. (Submitted by Shaun Nechvatal - image credit)
The Nechvatal family of Saskatoon runs a basketball fundraiser for cystic fibrosis every year. The two boys Dominic, left, and Benjamin, front, live with the disease. (Submitted by Shaun Nechvatal - image credit)

Shaun Nechvatal says that when he found out Saskatchewan will cover an expensive cystic fibrosis medication for his young son, it was like Christmas Day.

"I'm still getting goosebumps," he said. "This is a huge miracle drug for those in the community that are eligible."

The province announced Monday that starting Aug. 1, Trikafta, a medication for cystic fibrosis (CF), will be available to patients six and older who meet medical criteria.

Previously, the drug was approved only for patients 12 and older.

"We know that Trikafta has been shown to improve the quality of life for patients, and this expanded coverage will help children with CF and their families for years to come," Health Minister Paul Merriman said.

Cystic fibrosis is a progressive and fatal disease affecting the lungs. It causes lung scarring, mucus build up and frequent respiratory infections, among other complications. Nearly all deaths from the disease are the result of respiratory failure.

Trikafta works by targeting specific genetic mutations that cause the disease. The mutations impact about 90 per cent of patients with CF.

Father excited to see medical benefits for his two sons

Nechvatal is a Saskatoon father whose two sons, Dominic and Benjamin, live with cystic fibrosis.

Dominic, who is 13 years old, has been eligible for Trikafta since October. Nechvatal said the drug had an immediate effect on Dominic's quality of life.

"That first night at basketball practice, he told me, 'Dad, I don't feel as tired,'" said Nechvatal. "With some of the baseline testing that they've done and follow-up testing, he's already shown significant improvement in his airway clearance. It's really incredible to see this change in him."

Submitted by Shaun Nechvatal
Submitted by Shaun Nechvatal

Nechvatal is excited that Benjamin, who turns six in a few days, will soon have an opportunity to experience the effects of the medication.

"Dominic is seven years older, but the fact that [Benjamin] will have that seven years of progression of the disease rate, his lungs are going to hopefully stay as healthy as they're able to," he said.

"Hopefully that will show that decline or diminished progression of the disease."

Cystic Fibrosis Canada optimistic about impact

Currently, most provinces offer coverage for Trikafta for patients aged 12 and older.

Kelly Grover, president and CEO of Cystic Fibrosis Canada, said the amended drug coverage will change the trajectory of the disease for the children in Saskatchewan who live with cystic fibrosis.

"Saskatchewan was one of the first provinces to fund the drug for those 12 years of age and older last year, and today has continued to recognize Trikafta's extraordinary, transformative value," said Grover.

LISTEN | Shaun Nechvatal spoke with host Peter Mills on the Afternoon Edition: 

'No days off' with cystic fibrosis

Nechvatal feels hopeful thanks to the new coverage, but he knows it is not a cure.

"We're still being vigilant with their treatments. We've always kind of said there's no days off," he said. "They still have breathing treatments that they have to do, we still have to do their physiotherapy to clear their lungs of that mucus. And the expectation is that we're still vigilant and meeting that criteria to fulfil their treatments.

"I think the biggest thing is just that peace of mind, knowing that their bodies are not susceptible to as many infections and colds and viruses."

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