The Vancouver Island community has come together in an emotional show of support for nine-year-old Charleigh Pollock after news broke that the B.C. government is discontinuing coverage of the only medication that slows the progression of her rare, terminal disease. Charleigh, who was diagnosed in 2019 with Ceroid Lipofuscinosis Type 2 (CLN2), or Batten disease, is the only known patient in the province with this condition and one of just a dozen across Canada.
Last week, the Ministry of Health announced it would no longer fund Brineura, a costly drug that, while not curative, aims to slow the devastating effects of Batten disease. The Ministry cited strict criteria for continuation of coverage, stating that Charleigh has deteriorated to the point where there is no clinical evidence of further benefit from the medication. According to officials, the decision was not based on cost, but on guidance from the Canadian Drug Expert Committee, which found insufficient evidence to definitively support Brineura’s impact on quality of life, seizure control, or survival.
However, Charleigh’s family and advocates sharply disagree. Lori Brown, president of a Canadian Batten disease advocacy group and mother to a son who died of the same disease, argues that Brineura has made a significant difference for Charleigh. She points to Charleigh’s ability to maintain skills and personality far longer than children who do not receive the drug. Brown describes her late son’s rapid decline by the same age—bedridden and unable to communicate—contrasting it with Charleigh’s continued engagement and presence.
Brown accuses the government of relying too heavily on checklists and clinical data, rather than considering the lived experience and quality of life of patients. She warns that the decision could set a troubling precedent for other rare disease patients and urges the Ministry to consult directly with Batten disease experts and Charleigh’s care team.
Charleigh’s mother, Jori Fales, has been a tireless advocate since her daughter’s diagnosis, fighting for access to the only available treatment. For families like hers, the financial and emotional toll is immense. Community members, friends, and local organizations have launched fundraising campaigns and spread word of Charleigh’s plight, hoping to reverse the government’s decision and raise funds for continued treatment.
The Ministry maintains that clinical experts and data drive funding decisions, but critics, including Conservative MLA Brennan Day, say the government should listen more closely to frontline experts and the affected families. Day, who has a young daughter himself, calls the decision “morally wrong” and pledges ongoing support for Charleigh’s family.
Premier David Eby, while expressing deep empathy for the family, insists that such healthcare decisions should be left to medical professionals, not politicians. He acknowledges the tragedy and complexity of the situation but argues that government intervention in individual treatment decisions is not the solution.
Charleigh’s story has sparked a passionate debate about how rare disease patients are treated and supported in Canada. For now, her community continues to rally around her, determined to fight for her right to treatment and a better quality of life.
