Sask. mom 'hopeful' for daughter's future with province expanding coverage for cystic fibrosis medication

Shardelle Brown is more hopeful for her 6-year-old daughter's future now that an important medication to treat cystic fibrosis will be covered by the provincial government.

On Monday the province announced it would be expanding coverage for Trikafta, making it available to cystic fibrosis (CF) patients ages six and older who meet the medical criteria.

Trikafta targets specific genetic mutations that cause CF. The mutation affects approximately 90 per cent of CF patients.

Brown’s daughter Maren was initially six years away from getting coverage, as coverage for patients 12 and older came into effect in October of last year in Saskatchewan.

Trikafta costs around $300,000 per patient a year, before confidential rebates.

Brown had a range of emotions when she first heard the news.

“Very thrilled, very exciting, relieved, grateful … we were waiting for the day and was very excited when it came,” Brown said.

Brown says the cost of Trikafta was out of her reach and there would be no way for her family to afford it if the province didn't cover it. Now that it’s covered, it will give her daughter a brighter future and better quality of life.

“This drug is not a cure but it will slow the progression of the disease meaning less lung infections, less pulmonary exacerbations, less hospitalizations in her future,” she said.

Brown says if everything goes well with paperwork, Moren will be able to start taking the life-improving drug by the end of August.

According to the Canadian Cystic Fibrosis Registry, there are more than 4,300 CF patients in Canada and over 110 in Saskatchewan.

TRIKAFTA TREATMENT

Dr. Julian Tam is the director of the Saskatoon adult cystic fibrosis clinic and is excited about the province’s recent announcement.

Tam says younger people being able to take Trikafta will help them avoid lung complications of their CF before their lung disease progresses.

“The thing about Trikafta is that it’s a very powerful medication and, if I may, the biggest treatment breakthrough there has ever been for people with cystic fibrosis to date,” Tam told CTV News.

Kimberly Evans is the Saskatchewan advocate for CF Canada and says parents whose children have the disease have been fighting for Trikafta coverage for years.

“This is an absolutely huge miraculous milestone because there is no cure for cystic fibrosis, but when you have a medication that does the kind of things that Trikafta does, this feels very monumental,” Evans said.

Evans’ 14-year-old daughter Cassidy has CF and was approved to start taking Trikafta in October when the province approved coverage for patients 12 years old and up. She says the drug has been a “game-changer” for her daughter.

“Her energy has increased, we just have a very different outlook on the future for her with CF now that she’s on Trikafta,” Evans said.

As the provincial advocate, Evans says she’s been communicating with other parents of children with CF and can sense the relief as with the hefty price, there was “no way” people would be able to afford it since it’s an ongoing medication.