The Saskatchewan government announced its plans to cover all costs of the cystic fibrosis (CF) drug Trikafta.
The province is part of the pan-Canadian Pharmaceutical Alliance (pCPA), which has been engaged in negotiations with Vertex Pharmaceuticals for months.
After months of pushing for the news, the CF community is breathing a sigh of relief.
Thirteen-year-old Saskatoon resident Cassidy Evans has CF. Her mom, Kimberly Evans, said it felt amazing to be able to tell Cassidy some great news in regards to her chronic illness.
“This announcement that was made (on Friday) feels like a miracle,” said Kimberly, the provincial advocate for CF.
“She saw me tearing up. As a mom, breaking news like this to her, usually it’s not good when you have a chronic illness. It’s been a day we have been waiting for since she was diagnosed nine years ago.”
Every newborn in Canada is tested most commonly by a sweat test.
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Cystic Fibrosis Canada chief scientific officer Dr. John Wallenburg says CF affects mainly the respiratory system, particularly the lungs. As a way to counteract the inflammation that occurs, patients usually have a daily routine that involves methods such as devices that help get rid of mucus build-up.
The drug would be used for those over the age of 12 and who carry a specific type of CF gene mutation — or about 90 per cent of those with CF.
The medication costs about $300,000 a year, per patient.
“This is going to push their time horizons out,” said Wallenburg. “It’s going to open up all kinds of possibilities and remove a lot of barriers people felt they had in their lives.”
He says all three generations of drugs work in various stages of repairing proteins broken by CF. However, it’s the third-generation drug, Trikafta, which corrects the broken protein.
“It allows to treat up to 90 per cent of Canadians living with cystic fibrosis,” Wallenburg said. “What’s really important is you are not treating the symptoms that are the downstream result. Now you are going in and you are fixing the product.”
Dr. Wallenburg, says there is still work to be done for the next drug that covers the 10 per cent who have the modified gene that isn’t helped by Trikafta.
CF patient Chris MacLeod was granted exceptional drug status in 2012 after his lung function dropped to 30 per cent. He says if it wasn’t for the first-generation gene modulator Kalydeco, he more than likely would have died eight years ago. Instead, the drug doubled his lung function.
“Incredible,” said MacLeod, who is also the chair and founder of Canadian cystic fibrosis treatment society. “I went from four litres of oxygen to walking quickly up hills and back to work for 80 plus hours a week.”
MacLeod says instead of the provincial governments making an overall rule as to how or when the drug is given to patients, it should be a case-by-case situation.
“Let the clinician make the diagnosis in determination in consultation with the patient as to what medication they need and when they most effectively need it,” MacLeod told Global News.
Kimberly and Cassidy are big advocates for CF in Saskatchewan. Cassidy runs a lemonade stand that helps raise funds and brings awareness for the cause.
“CF never takes a day off, It is every day, twice a day. It’s a major routine for anyone with CF, especially a child just to keep their health at bay.”
Cystic fibrosis (CF) affects 4,300 Canadians, 130 of those are people residing in Saskatchewan.
The Cystic Fibrosis Canada website says that if the drug is approved sooner than later, it would result in 15 per cent fewer deaths and decrease those with severe lung complications by up to 60 per cent by the year 2030.
Saskatchewan joins Alberta and Ontario who have also announced they will fund the medication.
The drug plan is targeting to add the medication to the Formulary effective Oct. 1.