Saskatchewan to cover cost of ‘wonder’ cystic fibrosis drug Trikafta

The Government of Saskatchewan has announced plans to cover all costs of the cystic fibrosis (CF) drug Trikafta.

The province is part of the Pan-Canadian Pharmaceutical Alliance (PPA), which has been negotiating with Vertex Pharmaceuticals for months.

After months of clamoring for the news, the CF community breathes a sigh of relief.

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13-year-old Saskatoon resident Cassidy Evans has cystic fibrosis. Her mother, Kimberly Evans, said it was amazing to be able to give Cassidy some good news regarding her chronic illness.

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“This announcement that was made (Friday) sounds like a miracle,” said Kimberly, the provincial cystic fibrosis spokeswoman.

“She saw me cry. As a mom, breaking news like this is usually not good when you have a chronic illness. We’ve been waiting for a day since she was diagnosed nine years ago.

Every newborn baby in Canada is most often tested with a sweat test.

According to Cystic Fibrosis Canada’s Scientific Director, Dr. John Wallenburg, cystic fibrosis primarily affects the respiratory system, especially the lungs. To counteract the inflammation that occurs, patients usually have a daily routine that involves methods such as devices that help get rid of the mucus buildup.

The drug is said to be used for people over 12 years of age who carry a specific type of mutation in the cystic fibrosis gene, or about 90 percent of people with cystic fibrosis.

The drug costs about $ 300,000 per year, per patient.

“This will push their time horizons forward,” Wallenburg said. “It will open up all kinds of possibilities and remove a lot of obstacles that people thought they had in their lives.”

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He says all three generations of the drugs work at various stages of repairing broken down proteins in cystic fibrosis. However, it is the third generation drug, Trikafta, that corrects the broken protein.

“It can treat up to 90 percent of Canadians living with cystic fibrosis,” Wallenburg said. “What’s really important is that you don’t treat the symptoms that are the downstream result. Now you go in and fix the product.

Dr Wallenburg says there is still work to be done on the next drug that covers the 10 percent that have the altered gene that is not helped by Trikafta.

CF patient Chris MacLeod achieved exceptional drug status in 2012 after his lung function dropped to 30%. He says if it hadn’t been for the first-generation Kalydeco gene modulator, he would more than likely have died eight years ago. Instead, the drug doubled his lung function.

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“Amazing,” said MacLeod, who is also president and founder of Canadian Kystic Fibrosis. “I went from four liters of oxygen to walking briskly in the hills and back to work for over 80 hours a week.”

McLeod says that instead of provincial governments setting a general rule about how or when the drug is given to patients, it should be a case-by-case situation.

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“Let the clinician make the diagnosis by determining, in consultation with the patient, what medications they need and when they need them most,” McLeod told Global News.

Kimberly and Cassidy are big advocates for CF in Saskatchewan. Cassidy runs a lemonade stand that helps raise funds and raise awareness for the cause.

“CF never takes a day off, it’s every day, twice a day. This is an important routine for anyone with cystic fibrosis, especially a child, just to keep their health at bay.

Cystic fibrosis (CF) affects 4,300 Canadians, 130 of whom reside in Saskatchewan.

Cystic Fibrosis Canada’s website says that if the drug is approved sooner rather than later, it would lead to 15% fewer deaths and reduce the number of people with severe lung complications by up to 60% by 2030.

Saskatchewan joins Alberta and Ontario who have also announced they will fund the drug.

The drug plan aims to add the drug to the formulary as of October 1.

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