National Post - Ryan Painter: How bureaucrats almost stopped B.C. from saving a child's life
A 10-year-old girl with a terminal disease was almost cut off from her life-extending medication — all because politicians forgot their role
The following was published as a Special to National Post on August 5, 2025.
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.
This is the kind of sentence that shouldn’t exist in a functioning democracy.
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.
Then, in June, B.C.’s NDP government ended her treatment.
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.
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.
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.
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.
Then came the backlash.
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.
Let that settle in.
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.
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.
Osborne only acted under pressure. Premier David Eby, consistent in his absence, waited until the public outcry made it impossible not to respond.
Nowhere was that disengagement more obvious than in the silence of Charleigh’s own MLA, Ravi Parmar. As his young constituents’ fight for treatment became a province-wide controversy, Parmar was nowhere to be found. No statement. No interviews. No visible advocacy. Nothing that resembled the kind of moral clarity or leadership his office is entrusted to provide.
When the decision was finally reversed, Parmar’s office quietly claimed he had been working behind the scenes. But in moments like these, silence is not a strategy. It is abdication. It is complicity by omission.
Leadership is not measured by private emails or whispered assurances. It is measured by the willingness to stand up, publicly and unequivocally, when a child’s dignity is on the line. Parmar failed that test.
To his credit, Eby has now acknowledged the problem and promised reforms. He conceded that the process — which operates in secrecy, with no published reports or transparency — gives the impression that politicians are powerless or disengaged.
That impression isn’t wrong.
What Charleigh’s case reveals is a system so burdened by risk aversion and rigid process that it no longer responds to the people it serves. Bureaucrats make decisions behind closed doors. Politicians avoid responsibility. And families are left to plead for compassion from a structure that sees them as exceptions, not priorities.
We do not elect officials to defer to panels. We elect them to lead. When the process fails, leaders must step in, not after a media storm, but before one ever begins.
Committee members have argued that political involvement undermines medical integrity. But they miss the point. Legitimacy doesn’t come from secrecy or protocol. It comes from justice, empathy and the ability to recognize when rules get it wrong.
Justice in this case required listening. It required adapting. It required choosing humanity over institutional habit.
Charleigh is 10 years old. Her life has already been shaped by pain that no child should experience. But her family’s fight should never have been necessary. It should not take petitions, fundraisers or media campaigns to convince a government that a child’s life matters.
She deserved better. Her family deserved better. And the people of British Columbia deserve a government that leads with conscience, not one that waits to be shamed into action.
We cannot undo the decisions that led us here. But we can demand better. We must hold leaders accountable before another child is forced to fight the very system that promised to protect them.
National Post