A terminally ill nine-year-old girl will continue to get access to a life-changing drug while the province reviews a decision to rescind its coverage for the medication, B.C.’s health minister said Tuesday.
Charleigh Pollock has a neurological disorder called Batten disease that leaves her with recurring severe seizures and mobility loss, and will eventually cut her young life short.
Her family says a drug called Brineura has stabilized her condition and radically improved her quality of life since her 2019 diagnosis. The drug is expensive, carrying an annual bill for the twice-monthly infusions of about $1 million.
Earlier this month, the family was informed the province was pulling coverage for the drug — with her final covered infusion scheduled for Feb. 27.
Following a public outcry, the province said it was reviewing that decision, and on Tuesday Health Minister Josie Osborne said Charleigh would continue to receive drug coverage while the file was under review.
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“It’s very, very important to me that all of the facts of this case are reviewed, and that is why I have directed ministry staff to do that urgently, and I can confirm that we will, the ministry will extend the drug coverage while that review is taking place because it needs to be done thoroughly,” Osborne said.
“The family and physician brought forth new information. This is new, and we wanted to make sure that is well accounted for in the decision-making.”
Charleigh is the only child in B.C. who receives the drug.
In a previous interview, Charleigh’s mother Jori Fales told Global News losing access to the drug would be “catastrophic” for her daughter.
“She will have seizures again, her organs will start shutting down, she will require suction to breathe … it basically means she is going to suffer horrifically and be put to an earlier death,” she said.
“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.”
A GoFundMe remains active for anyone who wants to donate to the family.
