B.C. government won’t fund drug for rare disease for nine-year-old girl

VICTORIA — The British Columbia government says it will no longer fund an expensive drug for a nine-year-old girl who has a rare and terminal condition.

Health Minister Josie Osborne says in a statement that Charleigh Pollock’s condition with Batten Disease has reached the point where she meets the criteria to discontinue the use of Brineura.

The girl has been receiving the drug therapy since 2019 at a cost of about $1 million a year.

She is the only person in the province, and one of 13 children in Canada, who has the genetic and fatal disorder that results in multiple seizures a day.

The statement says clinical evidence shows that once a patient has declined in motor skills and language functions by a certain amount, the drug is no longer a benefit in slowing the progression of the disease.

Osborne says a Canada Drug Agency review of the latest research on the girl’s disease found there was no evidence to support its continuing drug coverage, given the advanced stage of her condition.

This report by The Canadian Press was first published June 18, 2025.

The Canadian Press