Quebec is the only place in North America where newborns are not screened for cystic fibrosis – but some doctors are working to change that.

CF is an inherited disease affecting more than 4,000 people in Canada, 1,300 of which are in Quebec.

“CF affects primarily three principal organs,” explained Larry Lands, director of the MUHC’s pediatric respiratory clinic. “The lungs get sticky mucous and infected and that's the main source of problems in the long term…half the patients will die or need a transplant before the age of 33.”

The family of Dylan Pislis only found out he had CF when he was four months old, after he developed pneumonia. He’s now 13.

“I knew something was totally wrong,” said his mother, Sandra Branco.

A genetic test was definitive, but Lands said had Dylan been screened with a simple blood test at birth, he would have been started on treatments right away, preventing lung damage that can't be undone.

“Quebec is the last jurisdiction in all of North America to not have newborn screening,” said Lands, who along with a team at the MUHC conducted a study of what happens in the six years after diagnosis.

“Comparing those who are diagnosed by newborn screening, we included Ontario and Alberta, and those who didn't undergo newborn screening – the children from Quebec,” he said.

They found children who underwent newborn screening did better long term.

“They had better growth, they were hospitalized less. If they were hospitalized, they stayed less time,” he said.

When asked with why there's no cystic fibrosis screening in Quebec, the province’s health ministry said in a statement: “It is a matter that is currently under examination by the National Institute of Public Health.”

The screening would cost the province about $500,000 per year.

Dylan, who is playing soccer this summer and doing well, said he wishes there was a newborn screening.

“I find if they would have known right away, I would have had much less problems,” he said.