B.C. ends funding for rare disease drug Brineura for 9-year-old Charleigh Pollock, leaving family heartbroken and raising global ethical concerns.
Family Devastated by Sudden Loss of Critical Drug
A Vancouver Island family is expressing grief and outrage after the British Columbia government discontinued funding for a rare and life-extending medication prescribed to their 9-year-old daughter. Charleigh Pollock, diagnosed with CLN2 Batten disease—a terminal neurodegenerative disorder—was informed on Wednesday that her access to Brineura would cease, with her final infusion taking place just a day later.
Brineura Was Only Option to Slow Rare Genetic Disorder
Charleigh, the only known child in British Columbia with neuronal ceroid lipofuscinosis type 2 (CLN2), had been receiving Brineura, a medication that costs approximately $1 million per year. Administered via direct brain infusion, the drug is designed to slow neurological decline caused by this rare genetic disease, which results in daily seizures, motor deterioration, and eventual loss of function.
Province Defends Decision Based on Medical Criteria
Health Minister Josie Osborne confirmed Thursday that the decision to halt Brineura was based on clinical evaluation—not financial cost. According to the Ministry of Health, Charleigh’s motor and language abilities had deteriorated to a point where she met the “discontinuation criteria” for the treatment, which is typically applied when the drug is no longer considered clinically effective.
“Clinical evidence indicates Brineura’s benefit diminishes after significant decline in function,” said Osborne, adding that such criteria are standard for determining treatment eligibility in rare disease cases.
Family Disputes Clinical Findings and Calls Move ‘Heartless’
Charleigh’s mother, Jori Fales, disputes the government’s claim, insisting her daughter has not reached an advanced stage of disease. She described the decision to end funding with just 24 hours’ notice as abrupt and deeply upsetting.
“Charleigh is not in advanced progression of her disease. This is simply not true,” said Fales. “It should have been up to her medical team and her family—not a panel behind closed doors.”
Global Experts Warn of Precedent and Outdated Guidelines
Medical experts abroad are alarmed by the B.C. government’s action. Dr. Ineka Whiteman, a global authority on Batten disease and head of research at the Batten Disease Support and Research Association, condemned the funding termination as both outdated and dangerous. She warned that the criteria used to judge Brineura’s effectiveness are based on early clinical trials and fail to reflect evolving data or patient outcomes.
“This is not just about Charleigh—it sets a precedent that could endanger treatment access for patients globally,” Whiteman stated.
Advocacy Continues as Family Seeks Broader Awareness
Despite the setback, Charleigh’s family says they are determined to advocate for continued access to Brineura—not just for their daughter but for others affected by CLN2 worldwide. Fales said she plans to document Charleigh’s journey to raise awareness and push for updated treatment guidelines.
“We still believe in a future where no child is denied hope,” said Fales. “Even if a cure doesn’t come in time for Charleigh, we’ll keep fighting for those who come after her.”
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