The B.C. government’s decision to cut off medication for a terminally ill nine-year-old girl has ignited a firestorm of debate over the intersection of science, politics and compassion.
Is there such a thing as too high a price to pay for a drug that could ease suffering in a dying child’s final years? Who makes the decision to cut it off? And who are they accountable to if they get it wrong?
These are all questions very much at play in the case of Charleigh Pollock, from Langford, who has the rare disorder called Batten disease. There is no cure. For the past six years, the government has funded the drug Brineura, which eases her seizures, provides comfort, and even allows her to go to school. It costs $1 million annually. Last week, Ministry of Health drug experts . Without it, medical experts say her death will be slow and painful.
The ministry points to reviews by the Canada Drug Agency suggesting Brineura becomes ineffective once a person with Batten disease reaches certain physical and physiological benchmarks. Based on that, they say Brineura no longer provides clinical benefit to Charleigh.
But Charleigh’s mother, Jori, and her family’s physician say they’ve seen something different. They cite fewer seizures, slowed disease progression and improved quality of life. That day-to-day experience, backed by the doctor’s medical observations, suggests the drug is still helping. And with Charleigh being the only person in B.C. with the disease, they argue her lived experience should matter more than theoretical, generalized national guidelines.
They're supported by national advocacy groups and who say the research is evolving and the benchmarks outdated. Clinical trials in ultra-rare diseases are often incomplete by necessity, which is why real-world data is so important. If the people closest to the patient are seeing results, doesn’t that count for something?
To be fair, drug funding isn’t simple. Governments can’t say yes to everything, especially treatments that cost $1 million a year. But that’s what makes political judgement so vital, to determine when a case is the exception, not the rule. The amount is not even a rounding error in the $95-billion budget.
Public outrage over the decision has been swift and sustained since the government first proposed cutting Charleigh off in February. Health Minister Josie Osborne initially defended the move, but later ordered a second review.
Four months later, that review came back with the same verdict last week: Cut off the drug. Charleigh’s family was notified the day before her final dose.
Osborne now says her hands are tied. She argues politicians can’t override expert advice, or risk setting a dangerous precedent.
But with respect, that’s exactly what elected officials are for. Bureaucrats provide the expert advice. Politicians are accountable for what happens next.
History is full of examples where bureaucracy gets it wrong — civil servants making narrow, myopic, rules-based decisions that ignore compassion, context or common sense. The job of government is to step in and apply judgement.
That already happens every day in B.C. politics. MLAs and ministers intervene quietly in hundreds of constituent cases where red tape and rules have created unfair outcomes. They make exceptions. They reverse bad calls. It’s how the system works.
Which brings us back to Charleigh. A nine-year-old girl who is dying. Whose doctor and family say a drug she’s been on for six years is still helping.
She’s expected to live only a few more years, with Batten disease proving fatal by mid-adolescence. And now she will be the first person in Canada to have her coverage discontinued under the criteria the B.C. government is using.
She is looking to a society, a government, and a BC New Democratic Party that claims to value compassion.
There are caveats in the federal drug review that give Osborne the opening to intervene, including an admission of “a scarcity of data to inform treatment discontinuation” and “insufficient data to establish discontinuation criteria.”
Would that set a precedent? Good. Perhaps it can be a precedent for compassion. If our politicians can’t make space for empathy in the face of suffering, then they aren’t worth the office that they hold.
It’s not a flaw when a minister sets aside policy for unique circumstances. It’s not a weakness to say: Thank you for the expert advice, but this is an extraordinary case and we’re making a different decision.
We don’t elect robots to blindly follow rules. We elect leaders to apply judgement, weigh compassion, and be accountable.
In short, politicians are the soul of government.
If this government still has one, now is the time to prove it.
Rob Shaw has spent more than 17 years covering B.C. politics, now reporting for CHEK ¾¢±¬´ó¹Ï and writing for The Orca/BIV. He is the co-author of the national bestselling book A Matter of Confidence, host of the weekly podcast Political Capital, and a regular guest on CBC Radio.
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