Funding for 10-year-old girl’s treatment cut off, then reinstated

Following months of uncertainty and public pressure, the BC Ministry of Health ultimately reinstated life-altering drug coverage for a 10-year-old Vancouver Island girl living with a rare and terminal disease.

Charleigh Pollock was diagnosed with Batten disease in 2019 and is the only child in the province to have received that diagnosis.

In June, Charleigh’s mother, Jori Fales, faced an unimaginable challenge when the province decided to stop funding Brineura, one of the only drugs that helps treat the disease.

The medication costs almost $1 million a year.

“I am furious, and I hate how my daughter is being treated,” said Fales.

The ministry explained that Charleigh had deteriorated to the point where no clinical evidence showed continuing the treatment would have further benefits.

Charleigh’s family started a GoFundMe campaign and was able to raise enough money to purchase her first privately funded dose of Brineura.

Weeks later, the province reversed course.

Rural health critic Brennan Day says he thinks the NDP realized public pressure wasn’t going away on the case.

“We need systemic reform,” he said.

“This shouldn’t have been allowed to happen in the first place.”

Health Minister Josie Osborne said the tipping point was after her office received a letter from 13 global Batten disease experts telling her she was wrong.

“I absolutely regret how this has played out,” she said.

“That is why we are taking action to ensure no family with Batten disease goes through this again,” said Osborne.

Osborne added the province would reimburse the family for the dose of Brineura it purchased with the help of donations.