B.C. pulls funding on $1M drug for 9-year-old Vancouver Island girl with rare condition

Courtney Dickson · CBC News

· Posted: Jun 18, 2025 4:49 PM EDT | Last Updated: 2 hours ago

The B.C. authorities said Wednesday it volition beryllium pulling backing for an highly costly cause utilized by 1 idiosyncratic successful the state — a young Vancouver Island girl. 

Charleigh Pollock, 9, suffers from neuronal ceroid lipofuscinosis benignant 2, besides known arsenic CLN2 oregon Batten disease, a uncommon and terminal familial upset that causes aggregate seizures each day, yet causing encephalon damage. 

Pollock's sanction became known successful 2019 erstwhile the state announced it would beryllium covering the outgo of a $1 million-per-year medicine for her known as Brineura, which is given done an infusion of fluid to the encephalon to dilatory the progression of CLN2.

Pollock is the lone idiosyncratic successful B.C. with the disease, which has nary cure.

"Expensive drugs for uncommon diseases adhd a furniture of complexity to decision-making," Health Minister Josie Osborne said successful a connection on Wednesday.

However, she said, the outgo of the medicine has thing to bash with the recommendations made by aesculapian experts that made this determination to halt coverage. 

Funding for the cause was approved when Pollock was 3 years old. 

Osborne said once a diligent has declined successful their centrifugal and connection functions by a definite amount, Brineura nary longer slows the progression of CLN2.

"Last year, it was determined that Charleigh's information had progressed to the constituent wherever she met the discontinuation criteria for Brineura," she said.

From there, she said the ministry undertook a reappraisal of the situation. 

The state said the determination to screen drugs for patients that autumn nether B.C.'s Expensive Drugs for Rare Diseases programme are made based connected recommendations from a committee of autarkic experts that usage objective criteria from by Canada's Drug Agency.

"I cognize this is not what Charleigh's household wanted to hear. It's not what immoderate of america wanted to hear," Osborne said.

In a Facebook station made connected June 13 anterior to the determination being made, Pollock's mother Jori Fales said that aft speechmaking the Drug Agency's report, she couldn't spot however the B.C. authorities would take to halt coverage. 

She said Pollock's aesculapian squad feels continuing the medicine is successful her champion interest. 

"Anything little is simply cruel and wrong," she wrote.

"It is not Charleigh's clip to discontinue Brineura," Fales added. "She is inactive benefiting, and we implore the state to let her to proceed surviving and accessing this drug."