But Charleigh Pollock’s mother argues her daughter’s doctors’ advice was ignored.
B.C. Premier David Eby says physicians and other experts should make medical decisions about a terminally ill Langford child, not politicians, but the girl’s mother argues her daughter’s doctors’ advice was ignored.
Eby made the comment at a media availability in Vancouver on Wednesday, after being asked about the possibility of restoring coverage of a drug called Brineura, which costs almost $1 million a year, for nine-year-old Charleigh Pollock.
“There is no happy solution here,” said Eby. “These are profound and awful decisions that have to be made by experts in the area and physicians, and not by politicians.”
In response, Charleigh’s mother, Jori Fales, said Thursday that if the government believes that, it should be listening to the girl’s physicians and experts in Batten disease, who have recommended the girl stay on the drug.
Fales said the drug would need to be ordered by Victoria General Hospital on Friday to be ready for Charleigh’s next bi-weekly infusion date, which is July 3.
As of Thursday, no further infusions were scheduled, “and there won’t be if they don’t reverse the decision by tomorrow,” she said.
As the family awaits a last-minute reprieve, they continue to plan for Charleigh’s 10th birthday party on July 2, “but there is a very dark cloud.”
B.C. Health Minister Josie Osborne announced on June 18 that the province was discontinuing coverage of the drug based on the recommendation of Canada’s Drug Agency, given the advanced stage of Charleigh’s condition.
Though Charleigh is unable to walk and talk, her family says the child is responsive and happy, and the drug has slowed the progression of the fatal disease — children with it typically live to about 10 or 12 — and greatly improved her quality of life.
The child’s last bi-weekly infusion was administered at Victoria General Hospital on June 19. She’s been getting the infusions since she was three.
Neuroscientist Dr. Ineka Whiteman, head researcher for the Batten Disease Support and Research Association in the U.S. and Australia, has predicted Charleigh’s decline will be rapid once the last of the drug leaves her system.
Canada’s Drug Agency noted in its report that “evidence is limited regarding advanced disease and when to stop treatment.”
Eby said “really hard and difficult and profound decisions” are made by physicians every day on whether a particular course of treatment is providing benefit.
“At the same time, it’s important to acknowledge how profoundly awful this particular case is,” said Eby.
“What these parents are going through with a terminally ill child, I wouldn’t wish on anybody, and I certainly pray that no other British Columbians have to face the kind of trials this family is going through.”
Critics of the government’s decision have noted that it’s not as if more children with Batten disease will be clamouring for extended drug coverage if the province goes against the recommendation of Canada’s Drug Agency to discontinue coverage.
Charleigh is the only child in B.C. with the disease and one of fewer than 20 in Canada.
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