Honourable Josie Osborne
Minister of Health
Government of British Columbia
Parliament Buildings
Victoria, BC V8V 1X4
February 10, 2025
Dear Minister Osborne,
I am writing to express my deep concern regarding the province’s decision to discontinue funding for Charleigh’s life-sustaining treatment. Charleigh, a nine-year-old child from British Columbia, has only two funded infusions remaining. After that, she will be cut off from Brineura at the end of the month—a decision that must be reversed immediately to prevent a tragic and entirely avoidable outcome.
The province’s stance on this matter is unacceptable and lacks the compassion that British Columbians expect from their government. Charleigh is the only child in British Columbia with Batten Disease, a rare and fatal genetic disorder that causes multiple daily seizures, loss of mobility and speech, and a rapid decline in quality of life. Since beginning treatment with Brineura, her seizures have stopped, her condition has stabilized, and she has been able to experience a significantly improved quality of life. Her parents describe her as joyful and full of love—something made possible by continued access to this treatment.
Stopping Charleigh’s treatment will have horrific consequences. Without Brineura, her condition will rapidly deteriorate, her seizures will return, and she will suffer immensely. Medical professionals who have been treating Charleigh strongly advocate for the continuation of this life-changing drug, and their input must be heard. Minister Osborne, I am requesting an urgent meeting with Charleigh’s family to discuss this decision and allow them, along with her medical team, to present their case directly.
Brineura is approved by both Health Canada and the FDA, with clear evidence demonstrating its effectiveness in slowing disease progression and improving life expectancy and quality of life. The justification for the Ministry of Health’s decision is unclear. The Ministry has cited adherence to Canadian Drug Expert Committee criteria, yet those criteria have not changed. Other provinces continue to fund Brineura, making BC the only province setting this dangerous and unacceptable precedent. Furthermore, Charleigh is now the first child in the world to have this treatment discontinued—an alarming distinction for British Columbia, and your ministry, to hold.
This decision appears to be driven by financial considerations rather than medical necessity. At approximately $1 million per year, the cost of Brineura should not be the deciding factor in whether a child lives or dies, especially within a publicly funded healthcare system. There are fewer than 20 children in Canada with Batten Disease, and Charleigh is the only one in BC. The Ministry’s refusal to confirm whether the decision can be reversed is causing additional distress for the family.
Minister Osborne, I urge you to take immediate action. This is a matter of life and death – as a father of a 7-year-old I cannot comprehend the toll this is taking on Charleigh’s parents. A meeting with Charleigh’s family must be scheduled as soon as possible, and the Ministry must provide clear answers regarding its decision-making process. Charleigh’s medical team must be given the opportunity to present their professional opinion, and most importantly, this funding decision must be overturned before it is too late.
British Columbia must not be the province that allows bureaucracy to take precedence over a child’s life. Compassion and medical necessity must guide this decision. I look forward to your prompt response and to working together to find a solution that ensures Charleigh continues to receive the care she desperately needs.
Sincerely,
Brennan Day,
MLA Courtenay-Comox
Critic for Seniors and Rural Health