B.C. minister to meet with terminally ill girl’s family after ending drug coverage

An emotional mother reacts to the news B.C. will not continue funding an expensive drug treatment for her nine-year-old daughter’s rare disease.

British Columbia’s health minister will meet this week with the mother of a terminally ill nine-year-old girl after the province announced it would no longer fund a drug to treat her rare condition.

Health Minister Josie Osborne’s office confirmed to CTV News that Osborne is planning to meet the mother of Charleigh Pollock on Friday to discuss the government’s decision to discontinue its funding for Brineura, a drug used to treat Batten Disease.

Pollock has been receiving the drug therapy since 2019 at an estimated cost of about $1 million per year.

The Vancouver Island girl is the only person in B.C., and one of only 13 children in Canada, diagnosed with the genetic neurodegenerative disorder that causes multiple seizures per day.

‘Family is heartbroken’

A statement last month from Osborne’s office said clinical evidence showed that the drug does not benefit patients once their language and motor skills have declined to a certain point.

The statement said a review of the latest research on the girl’s disease from Canada’s Drug Agency found there was no evidence to support continuing drug coverage given the advanced stage of her condition.

Jori Fales, the girl’s mother, responded to the province’s June 19 announcement with an emotional video posted to social media saying the drug treatments are still benefiting her daughter.

“Our family is heartbroken,” said Fales. “My daughter is not in advanced decline and she has been stable for years on this medication.”

‘Breaking new ground in cruelty’

The province’s decision to end the drug funding drew condemnation from the Canadian Batten Disease Support and Research Association

“B.C. is on the wrong side of history if they stick with this decision,” said association president Lori Brown.

The announcement has also attracted criticism from the official Opposition in the B.C. legislature.

Conservative Party of B.C. MLA Brennan Day is calling on the NDP government to reverse its decision and reinstate the drug funding for Pollock.

“This decision is not backed by science, compassion, or common sense,” said Day, who represents the Courtenay–Comox riding, in a statement Wednesday.

“B.C. has the opportunity to lead with compassion and integrity on rare disease care,” he added. “Instead, we’re breaking new ground in cruelty.”