Charleigh Pollock’s mother ‘disgusted’ as minister says rare-disease funds are denied

By Canadian Press on July 11, 2025.

The mother of a nine-year-old British Columbia girl with a rare and deadly disease says she’s “disgusted” with the decision not to renew coverage for medication that costs about $1 million a year.

Charleigh Pollock’s mother, Jori Fales, says through sobs in a social media video that there’s been a “complete disregard” for the life of her daughter who suffers from Batten disease.

Fales posted the video moments after B.C. Health Minister Josie Osborne announced there would be no change to an expert committee’s decision that the drug Brineura is no longer helping slow the progress of Pollock’s disease.

Fales says through gasps and tears that she’s “heartbroken” by the news and apologizes to her daughter, saying the family “fought so hard.”

Osborne told reporters that she knows the outcome of the review process is not what the family wanted.

She says she met Pollock’s parents last week to accept further information about Batten disease they said hadn’t been considered by the B.C. rare diseases expert committee, but that information and much more was looked at and the decision remains.

Osborne says cost was not considered and all provinces rely on clinical criteria recommended by Canada’s Drug Agency.

She says B.C. is not the only jurisdiction grappling with the issue, noting that the United Kingdom announced it would no longer provide coverage for Brineura for future Batten disease patients due to the limited evidence of its long-term effectiveness.

“This has been one of the most challenging issues that I have worked on since becoming health minister, and I take seriously my role to ensure that B.C. has drug review processes that are independent, evidence-based and treat people equally,” Osborne told reporters Friday.

This report by The Canadian Press was first published July 11, 2025.

Brieanna Charlebois, The Canadian Press