Renewed hope for B.C. girl with rare disease as new information presented to health minister

The mother of Charleigh Pollock is holding out hope for her daughter following a crucial meeting with B.C. Health Minister Josie Osborne on Friday.

Jori Fales told CTV News she feels “there is a window open again,” weeks after the family was told the province would no longer fund treatments for her nine-year-old daughter’s Batten disease, a rare and fatal neurodegenerative disorder.

“I felt that Friday we filled in a lot of gaps that were missing that were not in the CDA (Canadian Drug Agency) report by the specialists that were not contacted,” Fales said Monday.

In the meeting along with Charleigh’s family were Dr. Ineka Whiteman, the head of research and medical affairs for the Batten Disease Support and Research Association, and Lori Brown, the association’s president.

“We shared a lot of new information with her and we feel like she’s taken that on board and will be presenting this to her own committee again to review the new evidence that has come to light,” said Whiteman.

“I think that she was receptive to the new information that Dr. Whiteman presented that she wasn’t previously aware of,” said Brown.

Every day Charleigh is off the powerful drug Brineura could be doing irreversible damage. She is now five days past her regularly scheduled bi-weekly infusion.

“We say, ‘Time is neurons,’” said Whiteman. “And the loss of neurons that may happen between now and (the) reinstatement of infusions, which is what we’re aiming for, those neurons that are lost won’t be regenerated.”

Whiteman says leading clinical experts in Batten disease who weren’t consulted for the CDA report are condemning B.C.’s decision to defund Charleigh’s treatments.

“This is a poorly informed, poorly researched and unethical decision,” said Whiteman. “Charleigh is still benefitting well from this medicine and to have it taken away is effectively like a controlled euthanasia.”

“I think we’re all hoping to hear a statement from the province so we can all understand what’s the next step here,” said Fales.

On Monday, Premier David Eby was asked if the new information presented to the health minister would open the door to have Charleigh’s infusions reinstated. Eby did not close the door on the idea completely.

“If there’s additional evidence, if there’s additional information that was not considered, it should be considered,” said Eby.

In a statement, the health minister told CTV News: “If evidence exists that continuing treatment would still provide benefits for cases like these, I encourage the drug manufacturer to immediately submit it to Canada’s Drug Agency and to request that the discontinuation criteria - which all provinces that provide coverage for Brineura have adopted - be revised.”

Whiteman says the province’s decision makes it the first jurisdiction in the world to defund a child’s Brineura treatment, and potentially puts the government on the wrong side of history.

“While today is about Charleigh, this is way bigger than Charleigh,” said Whiteman. “This is about a national and global issue that Canada and B.C. is setting a very dangerous precedent for.”