Like so may other Canadians, this St. John's boy with CF is still waiting on a miracle


ST. JOHN'S, N.L. — Families across Canada breathed a deep sigh of relief last month when Health Canada finally green-lit a new miracle drug for cystic fibrosis, but there are still more than a few hoops to jump through.

Trikafta is the latest in a class of drugs called CFTR modulators that correct deficiencies caused by one or more of the 178 gene mutations related to the disease.

Unlike the others, which have limited success, Trikafta can literally halt the progression of lung and other organ failure in about 90 per cent of patients.

“It’s not a cure, of course, but it helps treat the underlying causes of CF,” said John Bennett, regional director of Cystic Fibrosis Canada (CF Canada) and the father of an 11-year-old boy with cystic fibrosis in St. John’s.

“It can be a life-changing drug.”

But its approval by Health Canada has been tied up in red tape, sparking a loud lobby from parents and advocates ever since the drug was approved in the U.S. in 2019.

Now that it’s approved, draft guidelines drawn up by the independent Canadian Agency for Drugs and Technologies in Health (CADTH) has many parents still scratching their heads.

“It’s been a whirlwind of emotion, there’s no doubt about it,” said Bennett.

“We’re still having to fight in terms of what is covered from both a provincial perspective and private insurer perspective, and now you’ve got these restrictive guidelines that essentially say you’ve got to get sicker in order to get the drug.”