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Conservative MLA Brennan Day Urges Minister Osborne to Save 9-Year-Old Langford Girl’s Life-Saving Treatment

UPDATE:  Brennan Day spoke to Jori, Charleigh’s mom again this morning. The ministry has extended treatment until June 28th. Letter still stands though, the system is broken and no family should need to go through this again and again. Pure torture. (03/25 9:19am)



COURTENAY, BC: Brennan Day, MLA for Courtenay-Comox and Critic for Rural Health and Seniors Health, is calling on Health Minister Josie Osborne to immediately intervene in the case of nine-year-old Charleigh Pollock, whose access to a critical life-sustaining treatment is set to expire this week.

Charleigh, a courageous young girl from Langford, has been battling CLN2 Batten Disease, a rare and terminal neurological disorder, since 2019. For the past five years, she has been receiving bi-weekly infusions of Brineura, a groundbreaking therapy that has significantly stabilized her condition and improved her quality of life.

In February, the Ministry of Health informed the Pollock family that funding for Charleigh’s treatment would be discontinued, with her last covered infusion scheduled for February 27. Following public outcry, the Ministry launched an urgent review and granted a temporary extension, delaying the final infusion to March 27. However, with that deadline just two days away, the family has yet to receive a clear decision on whether Charleigh’s treatment will continue.


“This ongoing uncertainty is cruel and unnecessary,” said Day. “This family has been living in limbo for weeks, not knowing if their daughter’s health will suddenly decline due to a bureaucratic decision. No family should have to fight for life-saving treatment for their child.”

Medical experts, including Dr. Ineka Whiteman, a leading authority on Batten Disease, have spoken out in strong support of continued Brineura treatments for Charleigh, warning that stopping treatment would likely lead to a rapid decline in her condition.

Day also raised broader concerns about the province’s Expensive Drugs for Rare Diseases (EDRD) review process, calling it outdated and inflexible.

“This case reveals serious flaws in how we evaluate and fund treatments for rare diseases. The process lacks transparency, timeliness, and compassion,” said Day. “We need a system that puts patients first, especially when those patients are vulnerable children like Charleigh.”

MLA Day is calling on Minister Osborne to personally ensure a decision is communicated to the Pollock family immediately, and to launch a full review of the EDRD process.

“Our healthcare system must be guided by empathy and common sense,” said Day. “The people of B.C. expect better, and Charleigh deserves better.”

 

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