Renewed Hope for B.C. Girl with Rare Disease as New Information Presented to Health Minister
BRITISH COLUMBIA, JUL 7 – Health Minister Josie Osborne is reviewing the decision to stop funding Brineura for Charleigh Pollock, with experts and community advocating based on new clinical criteria and ongoing benefits.
- On July 4, Health Minister Josie Osborne held a private meeting with Batten disease specialists and the mother of Charleigh Pollock to address critical new developments regarding her treatment.
- This meeting followed the province's June 18 decision to end funding for Brineura, a costly drug that slows but does not cure Charleigh's rare neurological disease.
- Experts and advocates argued that Charleigh, who turned 10 on July 2, still benefits from Brineura, citing relief from seizures and maintained skills despite disease progression.
- Dr. Ineka Whiteman criticized the Canadian Drug Agency review for limited evidence inclusion and lack of consultation with Batten disease specialists who designed the clinical scale.
- The minister committed to forwarding new information to the expert committee but gave no timeline for funding reversal, leaving Charleigh's treatment status uncertain amid community support efforts.
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Information for medication for Charleigh to be forwarded for review: Premier
B.C.'s premier says information presented to the health minister on Friday about the medication for a terminally ill 10-year-old will be forwarded to experts for review, but continues to make no promises on resuming funding.
·Victoria, Canada
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