The battle to restore provincial coverage for Langford girl Charleigh Pollock’s medication has ended with disappointment. Health Minister Josie Osborne confirmed that the government will not reverse its decision to stop funding Brineura, a drug considered “life-sustaining” for the 10-year-old.
For six years, Pollock received bi-weekly infusions of Brineura to slow the progression of Batten disease, a rare neurological disorder. Her family and advocates have argued that the treatment continues to reduce daily seizures and provide other critical benefits. Pollock’s last infusion was administered on June 19.
Charleigh’s mother, Jori Fales, described the announcement as “complete devastation.” She received notice by email shortly before Osborne spoke to the media on July 11. Fales expressed frustration over the timing and manner of communication, saying she felt “utterly disgusted.”
Fales and three Batten disease experts met with the minister on July 4 to present new information they believed was not considered by the Expensive Drugs for Rare Diseases committee (EDRD) or Canada’s Drug Agency (CDA) during this year’s review. They also raised concerns about the exclusion of two key international experts, including Dr. Angela Schulz, whose clinical scoring system was used to end Pollock’s funding. Schulz has since stated that the criteria are outdated and that she is creating updated measures to better capture Brineura’s long-term benefits.
Osborne’s office confirmed that all evidence presented at the July 4 meeting had already been reviewed by the EDRD committees in February, when Pollock’s physician appealed the initial decision. The minister also stated that the CDA evaluated eight separate publications from the two experts and that the drug manufacturer submitted additional unpublished research during the review process. “This has been one of the most challenging issues I have worked on as health minister,” Osborne said. “I take seriously my role to ensure that drug reviews in B.C. are independent, evidence-based, and treat people equally.”
Despite these assurances, Fales remains skeptical that the ministry fully considered the information presented. She added that Schulz has not been contacted directly and believes the decision was predetermined.
Charleigh is now eight days past her next scheduled infusion. Experts warn that missing doses can cause irreversible brain damage. Dr. Ineka Whiteman, head of research at the Batten Disease Support Research and Advocacy Foundation, emphasized that “any brain cells Charleigh loses from today won’t be regenerated.” She added, “Every day without the enzyme is damaging.”
Fales reports no immediate changes in her daughter’s condition, though she acknowledges that damage may already be occurring. Funds raised by the community will allow the Pollock family to pay privately for two more infusions. Osborne confirmed that Island Health is coordinating to administer the treatments.
Fales explained that while these two treatments may help Charleigh enjoy her summer, they are not a long-term solution. “At some point, we need to accept that Charleigh will no longer receive her infusions,” she said. She expressed gratitude to the community for their support and affirmed that it has reinforced the value of her daughter’s life.
