Provincial posted Jun 18, 2025 @ 03:20pm by Canadian Press

BC government won't fund drug for 9-year-old girl with rare disease

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.

<who>Photo Credit: Canadian Press</who>Health Minister Josie Osborne

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.

<who>Photo Credit: Charleigh's Journey/Facebook

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.

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