COURTENAY, BC: Brennan Day, MLA for Courtenay-Comox and Opposition Critic for Rural and Seniors’ Health, is calling on Minister of Health Josie Osborne to explain why Batten disease experts were not consulted before the Province made the decision to withdraw funding for the life-extending treatment Brineura for 9-year-old Charleigh Pollock.
“It has become increasingly apparent that no Batten disease specialists were consulted as part of this decision,” said Day. “We have yet to see any evidence that international or Canadian subject matter experts were brought in to assess Charleigh’s case or advise the provincial review board.”
“This isn’t just about policy, it’s about science, compassion, and doing the right thing,” said Day. “Instead of seeking expert second opinions, this government made a behind-closed-doors decision based on outdated criteria without first reaching out to the experts on this rare disease. That is simply unacceptable.”
Day noted that recent comments from global leaders in Batten disease research, including Dr. Ineka Whiteman, Head of Research and Medical Affairs for the Batten Disease Support and Research Association U.S. and Australia, echo these concerns. Dr. Whiteman warned that British Columbia’s move sets a dangerous global precedent by becoming the first jurisdiction in the world to remove a child from Brineura while still showing clinical benefit. ‘
“I’ve written to the health minister to ask a simple question: Can she tell British Columbians, in clear terms, whether any recognized Batten disease experts were consulted before cutting off this child’s only lifeline? Because everything we’ve seen so far suggests they weren’t.”
“This is what happens when bureaucracy overrides medical expertise,” Day concluded. “We have a government that has spent millions on failed drug programs and consultants, but when it comes to saving a child’s life, they say no. That’s not just cruel. It’s inexcusable. The minister must immediately reverse this decision and reinstate Brineura treatments for Charleigh while a proper, expert-informed review takes place.”
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