B.C. boy's classmates raise $17K to fight lung disease with no known cure

Students in West Vancouver took part in a fundraiser Friday with one particular classmate in mind.

The kids at St. Anthony's School raised thousands of dollars and awareness for a fatal genetic condition, inspired by a 10-year-old boy. 

The boy's community managed to raise $17,000 to fight cystic fibrosis, a lung disease that has no known cure.

Their efforts were also to highlight the need for government funding for a drug called Trikafta, the use of which was approved in Canada about one year ago.

Right now, the families of kids with cystic fibrosis have to pay for the drug, the boy's mother said.

"It's about $300,000 per year, per individual," Mariana Narciso told CTV News, an estimate backed up by the B.C. Health Ministry.

The drug is not covered by health-care plans for many aged 12 and up, the first age group its use was approved for.

"They need very good health insurance to get it," Narciso said.

Twenty-two countries fully fund the drug, which has been shown to dramatically reduce the rate of lung infections and hospitalizations in patients with the genetic condition.

In April, Health Canada did approve Trikafta for children aged six to 11, if those children have at least one specific type of gene mutation. 

According to Cystic Fibrosis Canada, children with the disease accumulate extensive damage to their lungs between the ages of six and 20, damage which is often irreversible and impacts their overall health.

The organization says early access to Trikafta can slow the progression of symptoms and alter the course of the disease.

It's calling on provincial and territorial governments, as well as private health-care insurance providers, to fund the drug for kids aged six and up.

Last fall, the provincial Ministry of Health said Trikafta would soon be covered through the B.C. Expensive Drugs for Rare Diseases process, and estimated it would help about 400 people, but it's unclear what age a person would have to be to qualify. 

Exceptional funding of EDRDs is at times determined on a case-by-case basis, when the funding is considered a last resort.