B.C. Pulls $1 Million Lifeline for Girl with Rare, Terminal Illness
In a move that has left a Vancouver Island family shattered, the British Columbia government announced it will stop funding a vital, million-dollar drug for a 9-year-old girl battling a rare and fatal genetic disorder. Charleigh Pollock, who has lived with Batten disease (CLN2) since early childhood, now faces an uncertain future as her last government-funded treatment arrives.
A Life-Changing Drug—Until Now
Charleigh’s journey with CLN2, a form of Batten disease, has been marked by daily seizures and the slow loss of motor and language skills. Over the past six years, her family and medical team have relied on Brineura, a groundbreaking enzyme replacement therapy infused directly into her brain. This treatment, costing upwards of $1 million annually, has dramatically slowed the progression of her disease and, according to her mother, Jori Fales, has given Charleigh a quality of life they once thought impossible.
“Brineura has been life-sustaining for Charleigh,” Fales told reporters. “It stopped her seizures and let her live as fully as possible. Now, we’re terrified of what comes next.”
The Sudden End to Coverage
Despite the family’s pleas and public outcry, the Ministry of Health announced on Wednesday that Charleigh would receive her final government-funded Brineura infusion on June 19. The decision, officials say, follows a thorough review by medical experts and is based on clinical criteria that indicate Brineura is no longer effective for patients whose motor and language functions have declined past a certain point.
Health Minister Josie Osborne, visibly emotional, clarified that the high cost of Brineura was not the reason for stopping coverage. “Expensive drugs for rare diseases add complexity to decision-making,” she said, “but the recommendation to end treatment comes from independent medical experts, not budget concerns.”
Why the Experts Say No
According to the Canada Drug Agency and provincial health authorities, Brineura is approved to slow the loss of mobility in children with CLN2—but only up to a point. Once a patient’s condition progresses beyond specific motor and language thresholds, clinical evidence shows the drug offers no further benefit. Charleigh’s case, they say, has now met these discontinuation criteria.
The Ministry of Health also noted that Brineura is not a cure, nor an anti-seizure medication, and that Charleigh will continue to receive other necessary treatments.
Family’s Heartbreak and Outcry
For Charleigh’s family, the decision is devastating. “We are heartbroken. We are angry. We are devastated,” Fales shared in a heartfelt Facebook post. She argues that the clinical criteria used are outdated and do not reflect the real-world benefits her daughter has experienced. Without Brineura, Fales fears Charleigh will face a rapid decline in health and a return of debilitating seizures.
Community members and advocates have rallied around the family, urging the government to reconsider. However, Minister Osborne confirmed that this is the final decision, though she expressed deep empathy for the Pollock family.
What Comes Next
With funding cut, Charleigh’s family must now explore alternative options, though few exist for such a rare and complex condition. The case has ignited debate about how governments should handle high-cost treatments for ultra-rare diseases, especially when no cure exists and the patient is a child.
Meanwhile, Charleigh remains the only child in B.C. diagnosed with CLN2, highlighting the unique challenges faced by families dealing with rare disorders.
