Provincial approval of cystic fibrosis drug has Albertans hopeful

LETHBRIDGE, Alta. -

Cystic fibrosis (CF) is a chronic disease that affects about 600 Albertans.

For many, the lungs are primarily affected making an everyday task like walking up the stairs a real challenge.

"It's one of the hardest mental diseases to deal with, because you're told your whole life when you're born that you have a cap on what you can do, how long you can live, and it's a very negative disease," said CF patient and Crowsnest Pass resident Marten Devlieger.

On top of lung complications, CF can cause malnutrition, digestion issues, and organ failure.

Amanda Bartels is another Albertan living with the disease who says before she was given compassionate supply of a gene modifying drug called Trikafta a year and a half ago, she was worried each day about whether or not she would wind up in the hospital.

"I was on a path to double lung transplant after having a really rough 2019. The drug started working within hours of taking it, which sounds unbelievable," she said.

The province recently announced that it will be funding Trikafta for those living with CF who meet the criteria for treatment and are at least 12 years old.

The drug carries an annual price tag of roughly $300,000 and will be made available to at least 330 people in the province.

LIVING LIFE TO THE FULLEST

For Bartels, the drug has been a blessing that has given her the ability to live her life to the fullest.

She's been able to get back on her bicycle and even cycled the Legacy Trail, something she didn't think would be possible years ago.

"It's very liberating and I am so excited for the kids and youth now that really, their life has completely changed,"

"It really is about being able to do the day-to-day things like looking after yourself and your household and just enjoy life with my family and that would be the biggest impact for many CF families now."

Marten Devlieger knows the impact of CF first-hand.

He's lived with it since he was just two years old and the disease claimed the life of his sister Karen at just 33 years-old.

Devlieger said hearing the news that the province is giving Trikafta the green light seemed too good to be true.

"After about a few hours, after it sunk in, it was absolutely complete joy. Not only for myself, but for so many in Alberta, like, pretty much everybody with CF in Alberta, is going to basically have a new life."

Trikafta was approved by Health Canada on June 18^th and has also been made available in Ontario, Saskatchewan, and Quebec.

“Trikafta is the single greatest innovation in cystic fibrosis history and it has the power to transform the lives of thousands of Canadians. The cystic fibrosis community in Alberta has fought long and hard to get this drug into their hands," said president and CEO of Cystic Fibrosis Canada.

"Access to Trikafta will mean longer and healthier lives for so many people, and the ability to plan for a future that many feared they might not live to see."

The hope for those living with CF is that the age range will eventually be broadened to include younger children dealing with the disease.