Vancouver Island family heartbroken as B.C. stops funding $1M drug for girl with terminal condition

Lauren Vanderdeen · CBC News

· Posted: Jun 19, 2025 10:57 PM EDT | Last Updated: 5 hours ago

A Vancouver Island household is successful daze aft learning the British Columbia government volition halt backing an highly costly medicine their young girl needs for a uncommon familial condition. 

Nine-year-old Charleigh Pollock is the lone idiosyncratic successful B.C. with Batten disease, oregon neuronal ceroid lipofuscinosis benignant 2 (CLN2).

It's a uncommon and terminal familial upset that causes aggregate seizures daily, yet causing encephalon damage. 

Pollock's mother, Jori Fales, said the household is inactive processing the news, announced Wednesday, that the B.C. authorities volition propulsion backing for Pollock's entree to Brineura, a $1-million-per-year medicine which is fixed done an infusion of fluid to the encephalon to dilatory the progression of CLN2.

"Emotions person gone from sheer heartbreak to choler to sadness; it's conscionable been a roller-coaster the past 24 hours," Fales said.

Thursday marked Pollock's past infusion of Brineura.

WATCH | B.C. pulls backing for young girl's treatment:

Fales called the government's determination to propulsion backing with 1 day's announcement earlier the past infusion "a small heartless."

She said her girl has been fto down.

"At the extremity of the day, it should person ever been the determination of her aesculapian attraction team, and her household and Charleigh. And nary of that has happened here."

On Thursday, B.C. Minister of Health Josie Osborne said it was a pugnacious determination to extremity the funding.

She said the outgo of the medicine had thing to bash with the crushed the backing was pulled, but that it was determined Pollock's information had deteriorated to the constituent wherever she met "discontinuation criteria" for Brineura.

"Clinical grounds shows that erstwhile a diligent has declined successful their centrifugal and connection functions by a definite amount, Brineura nary longer has the payment of slowing down the progression of the disease, though patients tin proceed to unrecorded connected into mid-adolescence," Osborne said.

Fales denied that her daughter's information has worsened.

"Charleigh is not successful precocious progression of her disease. This is simply not true," she said.

Dr. Ineka Whiteman, the caput of probe and aesculapian affairs for the Batten Disease Support and Research Association U.S. and Australia and caput of the Batten Disease Global Research Initiative, called the B.C. government's determination "appalling."

She expressed vexation with the provincial government's accent connected criteria to discontinue the medicine, which she said is based connected aged objective trials.

She added different families astir the satellite are becoming acrophobic their entree to the medicine whitethorn besides beryllium reconsidered.

"This is not conscionable astir a azygous child. This is truly mounting a very, precise unsafe precedent."

Fales said she plans to stock her daughter's travel and advocator for others dealing with the disease.

"There's ever the anticipation for a cure 1 day. It evidently won't beryllium successful Charleigh's time, but we always, ever stay [hopeful] that different families volition not person to spell done this."