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 cut her off. 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........

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