B.C. Lagging Behind on Rare Disease Drug Coverage and Transparency, Says Health Critic Anna Kindy
Victoria, BC: Conservative Health Critic Anna Kindy is calling for urgent changes to how British Columbia approves and funds drugs for rare diseases, after a growing number of families report being denied access to treatments already available in other provinces.
The recent case of 10-year-old Charleigh Pollock brought national attention to B.C.’s approach. Charleigh, who lives with Batten disease—a rare, degenerative brain disorder—nearly lost access to Brineura, a drug that was helping stabilize her condition. The province’s rare disease committee cut coverage despite medical evidence of benefit, only reversing the decision after widespread public and international pressure.
“This never should have happened,” said MLA Kindy. “We are rationing care for the most vulnerable, and families are being left to fight behind closed doors.”
Kindy said Charleigh’s case is part of a broader trend in British Columbia. Short bowel syndrome (SBS), a rare, serious condition that affects approximately 32 kids in the province. Some of those children rely on total parenteral nutrition (TPN) (i.e. feeding through a vein which can cause severe infections and liver failure), while others can end up requiring a bowel transplant. There is only one medication available to treat SBS. B.C. and PEI, which has no known cases of SBS, are the only provinces in Canada that do not publicly fund it.
“We treat people with addiction, but somehow we won’t treat children born with devastating conditions?” said Kindy. “This isn’t a lifestyle issue. This is about fairness, compassion, and giving patients a fighting chance in what is supposed to be a universal health care system.”
Adding to the concern is the lack of transparency. The province’s 52-member drug review committee operates in secrecy, its membership is undisclosed, its meetings unpublished, and families have no voice in the process. Meanwhile, B.C. has received $195 million in federal funding specifically to support rare disease drug access.
“With that kind of public investment, British Columbians deserve transparency,” said Kindy. “It’s time for change in British Columbia.”
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