The Honourable Josie Osborne Minister of Health
Government of British Columbia Victoria, BC
June 20, 2025
Dear Minister Osborne,
Re: International Expert Concerns Regarding Brineura Withdrawal for CLN2 Patient
I am writing to you in my capacity as the Official Opposition Critic for Rural and Seniors Health regarding the decision to discontinue Brineura treatment for Charleigh Pollock, a 9-year-old British Columbian living with CLN2 Batten disease.
While I recognize that rare disease drug funding decisions are among the most complex and ethically demanding in health care, I am increasingly concerned about the precedent this case sets—both within British Columbia and internationally.
In recent days, respected international experts in Batten disease have spoken out strongly against the Province’s position. Dr. Ineka Whiteman, Head of Research and Medical Affairs for the Batten Disease Support and Research Association U.S. and Australia, and Director of the Batten Disease Global Research Initiative, described the decision as “appalling.” She noted that the criteria used to justify withdrawing Brineura are based on outdated trial data and fail to reflect the evolving global consensus around disease stabilization and real- world benefit.
Dr. Whiteman also warned that this decision sets a dangerous precedent—British Columbia is now the first jurisdiction in the world to remove a child from Brineura while still demonstrating therapeutic benefit. Understandably, families in other countries are now alarmed that access to this life-extending medication may be reconsidered in their own jurisdictions.
This raises an essential question: Did the Expensive Drugs for Rare Diseases (EDRD) program or your Ministry consult with international CLN2 or Brineura specialists during the review of Charleigh’s case? If not, I respectfully ask why such consultation was not pursued, given the extraordinary rarity and complexity of the condition, and the readily available global expertise.
At the same time, while global concern continues to grow, the experience of the family here at home reveals another equally troubling issue—a profound failure in communication.
Although the board decision was made in October 2024, and then sent back for review in February 2025, Charleigh’s family received no clear communication until less than 24 hours before her final scheduled infusion. There was no proactive outreach, no mental health support, and no guidance provided to help the family prepare for what lies ahead. I was informed by the family just two weeks ago that they had not yet heard from your Ministry—prompting me to contact your office directly.
The impact of that silence cannot be overstated. What should have been a compassionate and carefully managed process became, for the family, an experience marked by confusion, isolation, and last-minute notification.
This is not an isolated administrative oversight. It represents a systemic failure to treat a family navigating unimaginable circumstances with the clarity, dignity, and humanity they deserve.
Minister, this is not about political point-scoring. This is about ensuring that decisions with life-altering consequences are made with the best available science, informed clinical judgment, and—critically—delivered with empathy and care. That standard was not met in this case.
I urge your office to publicly confirm whether international expert consultation occurred, and to commit to a full and transparent review of how the Ministry communicates and supports families facing rare disease treatment decisions. Families facing the unimaginable should feel surrounded—not abandoned—by their healthcare system.
In light of the growing concerns raised by Batten disease experts—both nationally and internationally—I am calling on you to immediately intervene and reinstate Charleigh’s Brineura treatments. This decision must be informed by the most current medical evidence and real-world clinical experience. I urge you to convene a panel of recognized specialists in CLN2 and Brineura without delay, and to ensure that any final determination reflects not just bureaucratic process, but genuine consultation, transparency, and compassion. The precedent being set here has implications far beyond one child—it demands leadership that puts people before policy.
There is still time to demonstrate leadership—not only for Charleigh and her family, but for every future case like hers both domestically and abroad. I hope you will seize this opportunity to lead with transparency, accountability, and compassion.
Sincerely, Brennan Day
MLA, Courtenay–Comox
Opposition Critic for Rural and Seniors Health