Private insurance is hurdle for Ontario patients needing ‘miracle’ Cystic Fibrosis drug

An annual price tag of $300,000 per patient puts Trikafta out of reach for a lot of families. Ontario said it would cover the drug, but some patients say there's a catch.

Stephanie Whaley’s 14-year-old daughter Ella had a zest for life and adventure. Her mom said she loved to surf in Hawaii, and zipline with her grandmother in Whistler.

But one breathtaking diagnosis has changed everything.

“She had a really rough first four or five years,” Whaley told Global News one afternoon. Her daughter was too sick to join the interview.

“Constantly sick, in and out of the hospital, had trouble gaining weight … it’s a lot of she just ‘can’t breathe.’ She can’t breathe in, and she can’t breathe out a full amount of breath.”

Ella was diagnosed with Cystic Fibrosis, a debilitating genetic disease that causes severe damage to the lungs. For Ella, it’s meant days full of heavy-duty antibiotics, IV injections, PICC lines, and round-the-clock care.

“In the last two years, she’s become a different person because of this disease,” Whaley said, wiping away tears. “In March, she tried to take her life because she said, living with cystic fibrosis is not living — it’s surviving the life she doesn’t want to live.”

But hope came in the form of a new, groundbreaking treatment a few years ago, Trikafta. Approved by Health Canada this past June, it’s been shown to increase lung function, potentially treating up to 90 per cent of Canadians with CF.

Whaley said it would be a game-changer for her daughter.