VICTORIA - Funding for a nine-year-old girl who has an extremely rare neurodegenerative disease has been restored by the British Columbia government.
Health Minister Josie Osborne said Thursday that she has reinstated the funding for Charleigh Pollock for the drug Brineura, which costs about $1 million a year.
Osborne said she believes health professionals should make decisions about care, and a letter she received from Batten disease experts in the United States detailed a “significant disagreement” over the drug.
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“I spoke to Charleigh’s family earlier this evening. I confirmed to them that I have reinstated Charleigh’s Brineura coverage and that coverage will be available to them for as long as the treating physician and the family deem it appropriate,” Osborne said in a statement.
The minister said the Vancouver Island girl and her family should not suffer because of the disagreement over the drug.
The government had cut off the funding last month, saying an expert committee determined that the drug was no longer helping to slow the progress of the girl’s disease.
It reinforced its decision last Friday, when Osborne said another review by an expert committee showed that the drug was no longer helping.
Osborne said the decision wasn’t about the cost of the drug.
The girl’s mother Jori Fales posted a video on social media sobbing, saying she was “disgusted” and “heartbroken” by the decision.
Premier David Eby said earlier Thursday that it was difficult to see the suffering and anxiety of the girl’s family.
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Eby said the letter from medical experts in the United States who treat children with this disease raised serious concerns about the Health Canada criteria applied in the province.
“That disagreement is certainly causing a lot of concern,” he said, noting that the health minister had planned to take it to the same committee that made the original decision.
Pollock is the only person in B.C. to have the disease and one of about 20 in Canada.
This report by The Canadian Press was first published July 17, 2025.
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