Charleigh, a nine-year-old girl with Batten disease in British Columbia, was recently informed that the provincial government would be withdrawing funding for her life-sustaining enzyme replacement treatment, Brineura. The decision sparked outrage and calls for a reversal as the treatment has significantly slowed down the progression of her disease. After initial resistance, the Health Minister ordered an urgent review of Charleigh's case, considering the potential quality-of-life benefits of continuing treatment.
The British Columbia government's decision to withdraw funding for a life-sustaining treatment for a nine-year-old girl with a rare genetic disorder is under urgent review . Charleigh , the only child in the province living with Batten disease, has been receiving bi-weekly enzyme replacement treatment funded by the province for over five years. The treatment, Brineura, has dramatically slowed down the progression of her disease.
However, Charleigh's family was recently informed that the province would be pulling its funding, as she no longer meets the criteria for the drug.Charleigh's mother, Jori Fales, expressed shock and frustration at the decision, stating that it felt like the government was deciding whether her daughter lived or died. She emphasized that while the disease ultimately determines Charleigh's lifespan, the withdrawal of funding would hasten her decline. Fales warned that without the treatment, Charleigh's quality of life would deteriorate rapidly, with daily seizures being just one of the potential consequences. The last scheduled infusion treatment is set for February 27th.Health Minister Josie Osborne initially defended the decision, explaining that it was made by medical experts based on clinical evidence and recommendations from Canada's Drug Agency. She stated that the criteria for using Brineura, including when therapy should be discontinued, had not changed. However, less than 24 hours later, Osborne reversed course and directed the Ministry of Health to urgently review Charleigh's case, considering the potential quality-of-life benefits of continuing treatment. The news was met with cautious relief by Charleigh's family. Fales expressed hopefulness but also acknowledged her continued fear for her daughter's future without the treatment.Charleigh's story has garnered widespread public support, with thousands responding to social media posts about her plight. Many have contacted their local Members of Legislative Assembly (MLAs) urging the government to reconsider its decision. Fales and Charleigh's father, Trevor Pollock, expressed gratitude for the overwhelming outpouring of support. However, Fales also pointed out the broader implications of the decision, fearing that it could negatively impact other families in Canada with children living with Batten disease, of which there are less than 20.
Batten Disease Funding Withdrawal Life-Sustaining Treatment Urgent Review Government Decision Charleigh British Columbia
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