Saskatchewan to Cover Cost of “Miracle” Cystic Fibrosis Drug Trikafta | The Canadian News

The Saskatchewan government announced plans to cover all costs for the cystic fibrosis (CF) drug Trikafta.

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

After months of pushing for the news, the CF community is breathing with relief.

Cassidy Evans, a thirteen-year-old Saskatoon resident, has cystic fibrosis. Her mother, Kimberly Evans, said it felt amazing to be able to tell Cassidy great news regarding her chronic illness.

“This announcement that was made (on Friday) feels like a miracle,” said Kimberly, the provincial CF advocate.

“She saw me cry. As a mother, giving news like this is generally not good when you have a chronic illness. It’s been a day we’ve been waiting for since he was diagnosed nine years ago. “

All newborns in Canada are most frequently screened with a sweat test.

Dr. John Wallenburg, Scientific Director of Cystic Fibrosis Canada, says that CF primarily affects the respiratory system, particularly the lungs. As a way to counteract the inflammation that occurs, patients often have a daily routine that includes methods such as devices that help remove mucus build-up.

The drug would be used for people over the age of 12 who carry a specific type of CF gene mutation, or about 90 percent of people with CF.

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

“This is going to broaden their time horizons,” Wallenburg said. “It will open up all kinds of possibilities and remove a lot of barriers that people felt they had in their lives.”

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

“It treats up to 90 percent of Canadians living with cystic fibrosis,” Wallenburg said. “What is really important is that you are not treating the symptoms that are the aftermath. Now you’re going to go in and you’re fixing the product. “

Dr. Wallenburg says there is still work to be done for the next drug that covers the 10 percent that has the modified gene that is not helped by Trikafta.

CF patient Chris MacLeod achieved exceptional drug status in 2012 after his lung function dropped to 30 percent. He says that if it weren’t for the first-generation genetic modulator Kalydeco, he most likely would have died eight years ago. Instead, the drug doubled his lung function.

“Unbelievable,” said MacLeod, who is also the president and founder of Canadian Cystic Fibrosis. “I went from four liters of oxygen to walking briskly uphill and back to work for more than 80 hours a week.”

McLeod says that rather than provincial governments laying down a general rule on how or when the drug is administered to patients, it should be a case-by-case situation.

“Let the doctor make the diagnosis by determining in consultation with the patient what drug they need and when they need it most effectively,” McLeod told Global News.

Kimberly and Cassidy are strong advocates for CF in Saskatchewan. Cassidy executes a lemonade Stand that helps raise funds and raises awareness about the cause.

“CF never takes a day off, it’s every day, twice a day. It’s an important routine for anyone with CF, especially a child, just to keep their health in check. “

Cystic fibrosis (CF) affects 4,300 Canadians, 130 of them are people residing in Saskatchewan.

The Cystic Fibrosis Canada website says that if the drug is approved sooner rather than later, it would result in 15 percent fewer deaths and decrease people with severe lung complications by as much as 60 percent by 2030.

Saskatchewan joins Alberta and Ontario, which have also announced that they will fund the drug.

The drug plan aims to add the drug to the formulary beginning October 1.