July 18, 2025
RED FM News Desk
The British Columbia government has reinstated funding for Brineura, a drug costing approximately $1 million annually, for nine-year-old Charleigh Pollock, who suffers from a rare neurodegenerative disease.
Health Minister Josie Osborne stated that she believes health professionals should make decisions about care. She noted that a letter from Batten disease experts in the United States detailed “significant disagreement” over the drug’s efficacy.
Charleigh’s mother, Jori Fales, shared a video on social media, expressing that she was “overwhelmed” by the province’s decision.
“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 government had initially cut off the funding last month, citing an expert committee’s determination that the drug was no longer effectively slowing the progression of the girl’s disease. This decision was reinforced last Friday, when Osborne stated another expert committee review showed the drug was no longer helping.
Osborne emphasized that the decision was not about the drug’s cost.
Premier David Eby had earlier on Thursday acknowledged the difficulty in witnessing the suffering and anxiety of the girl’s family. Eby mentioned that the letter from U.S. medical experts, who treat children with this disease, raised serious concerns about the Health Canada criteria being applied in the province. “That disagreement is certainly causing a lot of concern,” he noted.
Pollock is the only person in B.C. with Batten disease and one of about 20 cases in Canada.
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