Ryan Painter: How bureaucrats almost stopped B.C. from saving a child's life

National Post

16 hours ago

In British Columbia, at least 10 members of the province's expensive drugs for rare diseases (EDRD) committee have resigned, not because the government failed a dying child, but because it finally helped her.
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This is the kind of sentence that shouldn't exist in a functioning democracy.
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Charleigh Pollock is a 10-year-old girl living with terminal Batten disease. Until recently, she was receiving Brineura, a drug that doesn't cure the condition but slows its progression and improves quality of life. For Charleigh, it did just that. Her seizures stopped. Her condition stabilized. She went back to school. She played. She laughed. She lived in the way every child should.
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Then, in June, B.C.'s NDP government ended her treatment.
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Health Minister Josie Osborne pointed to recommendations from the EDRD committee and Canada's Drug Agency, which, she said, claimed there was 'no clinical evidence (the drug) would provide further benefits.' That term, clinical, bureaucratic and cold, ignored what was visible. Charleigh's family and doctors saw stabilization. Experts in Batten disease, both here and abroad, affirmed the drug was helping her.
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Still, the province refused to budge. Funding was denied. Appeals were dismissed. Charleigh's parents turned to crowdfunding, launching a GoFundMe campaign to fund her continued care.
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It was ultimately British Columbians, outraged by what they saw and by the painful pleas for help made by Charleigh's mother Jori Fales, who turned the tide against the government. The public rose up: advocates, physicians, editorial boards and thousands of citizens. Petitions circulated. Columns demanded action. People made clear what the government would not: that compassion should never depend on political expedience or private fundraising.
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On July 17, after weeks of silence and mounting political pressure, Osborne reversed the decision. Funding resumed. Charleigh's treatment was back on track. Her family could breathe again.
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Then came the backlash.
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Ten members of the EDRD committee resigned, claiming the minister's reversal amounted to political interference. To them, it wasn't the denial of a child's care that crossed a line. It was restoring it.
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Let that settle in.
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An unelected committee withdrew a terminally ill child's treatment behind closed doors. A minister intervened only when the political cost of inaction became too high. And when she finally did, the loudest protest came from within the system itself.
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This wasn't just a policy failure. It was a collapse of moral leadership. A failure made worse by how long elected officials remained silent.
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Osborne only acted under pressure. Premier David Eby, consistent in his absence, waited until the public outcry made it impossible not to respond.