The B.C. Ministry of Health has determined that a terminally ill nine-year-old girl will no longer continue to get access to a life-changing drug.
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 mother, Jori Fales, was informed on Wednesday that her daughter’s final government-funded treatment will be on Thursday.
Fales says a drug called Brineura has stabilized Charleigh’s 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.
Choking back tears, B.C. Health Minister Josie Osborne said at a press conference on Wednesday that “Charleigh has met the discontinuation criteria.”
She said there is no cure for Charleigh’s condition and Brineura is not an anti-seizure medication.
She added that clinical evidence has shown that the drug is no longer benefiting Charleigh.
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Osborne said Charleigh’s case is one of the most challenging she has worked on in her career as health minister.
“I want to acknowledge Charleigh and her family, who are experiencing what is unimaginable for most of us – the incredibly heavy and emotional toll of an extremely rare and incurable disease,” Osborne said.
“Their journey – like all families with a child who is diagnosed with a rare disease – is one filled with uncertainty, fear and endless, endless advocacy.
“I empathize deeply with Charleigh’s family, and my heart goes out to them.”
Earlier this year, the province’s Expensive Drug For Rare Disease Committee determined the drug was no longer meeting the criteria for funding in this case. Health Minister Josie Osborne stepped in and asked for an additional review, extending the drug coverage for an additional four months.
The Canada Drug Agency has now done the review for Brineura and based on that review, the province determined the drug was no longer eligible for funding.
Charleigh is one of fewer than 20 children in Canada with this rare condition. She is the only patient in B.C. and was diagnosed just a few weeks before her fourth birthday.
The B.C. government has never overruled the independent rare drug committee on a drug funding decision.
Fales told Global News on Wednesday that she is processing the news and is expected to release a statement on Thursday.
In a previous interview, 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.
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