Hon. Josie Osborne
Minister of Health
Province of British Columbia
Dear Minister Osborne,
I am writing to you once again regarding the case of nine-year-old Charleigh Pollock from
Langford, who has been courageously battling CLN2 Batten Diseaseâa rare and terminal
neurological disorder. Since her diagnosis in 2019, Charleigh has been receiving bi-weekly
infusions of Brineura, a treatment that has significantly stabilized her condition and improved her
quality of life.
In early February, the Ministry of Health informed Charleigh’s family that funding for her
treatment would be discontinued, with her final covered infusion scheduled for February 27. This
decision was met with public outcry and profound distress from her family, who feared a rapid
deterioration in her health without the medication. Subsequently, the Ministry announced an
urgent review of the decision and extended the funding temporarily, with the last covered
treatment now set for March 27âjust two days from today.
Despite this extension, Charleigh’s family has yet to receive a definitive decision regarding the
continuation of her treatment. This prolonged uncertainty is causing undue emotional and
psychological strain on a family already grappling with the challenges of caring for a terminally
ill child.
The handling of Charleigh’s case highlights significant flaws within the Expensive Drugs for
Rare Diseases (EDRD) review process. The criteria used to determine eligibility for lifesustaining
treatments like Brineura appear outdated and lack the flexibility needed to
accommodate individual patient circumstances. Notably, Dr. Ineka Whiteman, a leading expert
in Batten Disease, has expressed bafflement over the decision to cut Charleigh’s funding,
emphasizing that discontinuing treatment would likely lead to a rapid decline in her health.
Furthermore, the lack of transparent communication and the protracted decision-making process
are unacceptable. Families facing rare diseases require timely and clear information to make
informed decisions about their loved ones’ care. The current system’s deficiencies are causing
unnecessary hardship and eroding public trust in our healthcare institutions.
Minister, I urge you to personally intervene in Charleigh’s case to ensure that a clear decision is
communicated to her family immediately. Beyond this individual case, I call upon you to initiate
a comprehensive review and reform of the EDRD process to address its systemic shortcomings.
It is imperative that our healthcare system demonstrates empathy, transparency, and
responsiveness, especially when the lives of vulnerable children are at stake.
British Columbians expect and deserve a healthcare system that upholds the highest standards of
care and compassion. I trust you will act swiftly to rectify this situation and prevent similar
occurrences in the future.
Sincerely,
Brennan Day
MLA, Courtenay-Comox
Critic for Rural Health and Seniors Health