If you’re going to be the government that yanks medication from the hands of dying 10-year-old girl, if you’re going to watch her die a slow and agonizing death because of your decisions, if you’re going to justify her suffering on the grounds of some larger protection of policy and procedures — well, you better have an iron clad case to withstand the public scrutiny.
The BC NDP government is learning that lesson the hard way as it fumbles through the case of Charleigh Pollock, the little girl from Langford with the ultra-rare disorder called Batten Disease.
Bit by bit, to withdraw medication for Charleigh is crumbling. And as it falls, the political backlash rises.
Experts in Batten Disease accompanied Charleigh’s family to a meeting with Osborne on Friday, bringing with them new evidence to support the continued funding of the drug Brineura, which they say is preventing seizures and prolonging Charleigh’s quality of life in her final few years of an incurable disease.
At the core of their argument is this: B.C. didn’t consult the top international experts, didn’t review emerging evidence, and relied on a clinical scale so outdated that its own inventor is now replacing it.
They presented an appeal from Dr. Angela Schulz, who says the scale she developed to measure Batten Disease is no longer accurate for assessing motor and language functions, and should not be used in Charleigh’s case. She’s currently developing a new system. Schulz stayed up until 2 a.m. in Germany to be available for questions by phone from Osborne during the meeting. But the minister, for whatever reason, declined to take the call.
“She said this is not a sufficient tool, please don't use this tool,” said Dr. Ineka Whiteman, head of research at the Batten Disease Support Research and Advocacy Foundation, who flew to Victoria from New Zealand for the meeting.
These arguments introduce serious doubt into the government’s decision last month to discontinue Brineura for Charleigh after six years of coverage.
That’s alongside the fact Charleigh is the only person in the province with the disease, that she likely has fewer than five years left to live, and that her primary care team say Brineura continues to reduce her seizures and improve her day-to-day life in real-world conditions.
Each of those points is an opportunity for government to craft an artful exemption on compassionate grounds for Charleigh. It could, for example, grandfather her drug coverage while conducting a more comprehensive international review of emerging Brineura research for the future.
And yet, Osborne has consistently refused to find solutions.
“If evidence exists that continuing treatment would still provide benefits for cases like these, I encourage the drug manufacturer to immediately submit it to Canada’s Drug Agency and to request that the discontinuation criteria — which all provinces that provide coverage for Brineura have adopted — be revised,” Osborne said in a statement Monday.
It read like what it was: bureaucratic deflection.
The BC NDP government has boxed itself in. By declaring that politicians have no role in drug decisions, it has abdicated the very discretion it now needs. It framed this as a battle of science versus politics, while ignoring the reality that the science is far from settled on Batten Disease.
In the absence of certainty, Charleigh’s case demands interpretation and judgement by those elected to exercise both, and then be accountable for their decisions. That’s the very definition of the minister’s job.
A visibly frustrated Premier David Eby fielded questions on the issue again Monday, saying he expects any new evidence to be submitted to the drug review committee so it can advise Osborne accordingly.
Eby has previously warned of the precedent that might be set if politicians intervene.
A precedent? For the only girl in the province with a terminal disease so rare the science remains unsettled?
There is always room for mercy.
The only precedent truly at play here is a political one, and it should worry New Democrats deeply. Voters tend to hate governments they view as heartless, spineless, stubborn and spiteful.
Typically, they tend to get thrown out of office.
Rob Shaw has spent more than 17 years covering B.C. politics, now reporting for CHEK News 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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