After facing months of uncertainty and public outcry, the BC Ministry of Health has made a significant decision to reinstate coverage for a life-changing drug for 10-year-old Charleigh Pollock, who is battling a rare and terminal disease on Vancouver Island.
Charleigh was diagnosed with Batten disease in 2019, making her the only child in the province with this condition. When the province initially stopped funding Brineura, a crucial drug for treating the disease, Charleigh’s mother, Jori Fales, expressed deep frustration and concern.
The cost of the medication amounts to nearly $1 million annually, adding to the family’s stress. Fales shared her anger over the situation, emphasizing the importance of proper treatment for her daughter.
Despite the ministry’s claim that Charleigh had not shown further clinical benefits from the treatment, the family took matters into their hands by starting a successful GoFundMe campaign to secure the first privately funded dose of Brineura.
Fortunately, the province later reversed its decision, which was seen as a result of persistent public pressure and advocacy, highlighting the power of community support in such cases.
Rural health critic Brennan Day criticized the initial decision and called for systemic reforms to prevent similar situations from occurring in the future.
Acknowledging the misstep, Health Minister Josie Osborne mentioned receiving a compelling letter from global Batten disease experts, prompting the ministry to take corrective action and promising to prevent such challenges for families facing similar circumstances in the future.