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

Shaun Nechvatalsays that when he found out Saskatchewanwill 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 provinceannounced Monday that starting Aug. 1, Trikafta, a medication for cystic fibrosis (CF),will be available to patients six and older who meetmedical 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 aprogressive and fatal disease affecting the lungs. It causes lung scarring, mucus build upandfrequent 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 impactabout 90 per cent of patients with CF.

Father excited to see medical benefits for his twosons

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

Dominic, who is13 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."

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 issevenyears 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 diseasefor 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 recognizeTrikafta's extraordinary, transformative value," saidGrover.

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

'No days off' with cystic fibrosis

Nechvatalfeelshopeful thanks to the newcoverage, 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 fulfiltheir treatments.

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