B.C. resumes funding Brineura for Charleigh Pollock, a girl with rare CLN2 disease, after backlash over coverage cut of the $1M life-extending drug.
Province Reverses Course on Brineura Coverage
The government of British Columbia has reinstated public funding for Brineura, a $1-million-per-year medication critical to the health of 10-year-old Charleigh Pollock, who suffers from a rare and terminal genetic disorder. The decision, announced Thursday by Health Minister Josie Osborne, follows weeks of public concern and advocacy by the Pollock family and medical professionals.
A Fight for Life-Saving Treatment
Charleigh, the only person in B.C. diagnosed with neuronal ceroid lipofuscinosis Type 2 (CLN2), also known as Batten disease, relies on Brineura to slow the disease’s devastating effects. Without the drug, children with CLN2 suffer multiple daily seizures, progressive brain damage, and eventual loss of mobility and speech. Brineura is administered through direct brain infusions, and although not a cure, it has been shown to slow deterioration in some cases.
Medical Review Initially Denied Continued Use
Last month, the province halted funding after a medical review committee concluded that Brineura no longer met effectiveness criteria, citing Charleigh’s declining motor and language functions. The decision was met with swift backlash, as her family and several clinicians argued the drug continued to improve her quality of life.
Experts Disagree, Family Voices Heard
On Thursday, Minister Osborne acknowledged that there is “significant disagreement between health experts” regarding Brineura’s efficacy at advanced stages of CLN2. A new letter from Batten disease specialists challenged the original decision, prompting the ministry to reverse the cut. Osborne said the province would now fund Brineura “for as long as the treating physician and the family deem it appropriate.”
A Unique Case with National Attention
Charleigh is one of only 13 children in Canada with CLN2 and became a public figure in 2019 when B.C. first agreed to cover Brineura. The decision then was seen as a landmark step for rare disease coverage in Canada. The recent funding scare reignited debate over access to costly treatments for ultra-rare conditions and highlighted the emotional toll such decisions can have on affected families.
Moving Forward
The Ministry of Health has confirmed the family was notified immediately of the reinstated coverage. Minister Osborne emphasized the importance of clinical evidence in treatment decisions but also stressed that patients should not suffer due to expert disagreements.
“While the science is still evolving,” she said, “we must prioritize compassion alongside evidence in our public health decisions.”
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