B.C. ending rare drug coverage means girl will ‘suffer horrifically,’ family says

A Vancouver Island family is fighting to regain access to a rare drug that’s had a life-changing effect on their terminally ill daughter.

Nine-year-old Charleigh Pollock was diagnosed with a neurological disorder known as Batten disease, or CLN2, in 2019.

She developed seizures and mobility loss and began to decline rapidly — until she was put on a drug called Brineura, her mother Jori Fales explained.

Twice-monthly infusions of the drug, which costs about $1 million per year, stabilized Charleigh and left her seizure-free.

“She’s thriving and has an excellent quality of life and we are very grateful to have had her on these infusions for the last five and a half years,” Fales said.

But last week, the family got devastating news.

Charleigh’s physician informed them the provincial government had discontinued funding for the treatment.

“If the drug is discontinued, the effects on Charleigh are going to be catastrophic,” Fales said.

The decision came despite Charleigh’s medical team being unanimous in support of her continued treatment, Fales said.

Fales said the province has told her to go through an appeals process about the decision.

But she said Charleigh’s final infusion is scheduled for Feb. 27 — just two weeks away.

She said it’s unclear how long the appeal process could take or if it would even be successful, leaving the family fearing the worst for their daughter as the clock ticks down on her last infusion.

“Someone has the power to reverse this immediately,” she said.

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“Going through an appeal process is time-consuming, it’s exhausting, and we won’t know when the answers will come.”

The situation has drawn the attention of the family’s MLA, BC Conservative Brennan Day, who wrote to Health Minister Josie Osborne in protest.

“Stopping Charleigh’s treatment will have horrific consequences,” Day wrote.

“The justification for the Ministry of Health’s decision is unclear … other provinces continue to fund Brineura, making B.C. the only province setting this dangerous and unacceptable precedent.”

The province did not make Osborne available for an interview on Tuesday.

In a statement, the health minister said she empathized “deeply” with the family.

“While coverage decisions under BC’s Expensive Drugs for Rare Diseases program are made by medical experts based on clinical criteria and recommendations from Canada’s Drug Agency, I have directed the Ministry of Health to urgently review all of the facts of this case and determine whether continuing treatment may have quality-of-life benefits for Charleigh,” she wrote.

In the meantime, Fales said the outpouring of support from her community and strangers alike has been overwhelming.

She said the family continues to hold out hope that the decision will be reversed.

“I truly feel in my heart that Charleigh is going to tell us when she is ready to rest,” she said through tears.

“This life is painful enough, having to raise a terminally-ill child, and now having to fight to keep her in this world — like, just let us have our life back and let us have our child for the time we have left and let her be pain-free.”