Langford parents who are fighting the province’s decision to cut drug coverage for their terminally ill child will meet with B.C. Health Minister Josie Osborne on Friday.
“I am cautiously optimistic but we have been disappointed twice now,” said mother Jori Fales.
Nine-year-old Charleigh Pollock takes the drug Brineura to slow the progression of Batten disease (CLN2), a fatal neurodegenerative disorder.
On June 18, Osborne announced that the province would uphold a recommendation from Canada’s Drug Agency to discontinue coverage of the drug, which costs almost $1 million a year, based on the advanced stage of Charleigh’s condition.
“Charleigh has met the discontinuation criteria,” Osborne said, noting how difficult the decision has been.
Charleigh’s last infusion at Victoria General Hospital was June 19. Her next one would have been due Thursday, the day following her 10th birthday.
Though Charleigh is unable to walk and talk, her family says she is responsive and happy, and the drug has slowed the progression of the fatal disease and greatly improved her quality of life. Children with Batten’s disease have a life expectancy of 10 to 12 years.
“Charleigh is running out of time, and if nothing changes we will be absolutely shattered,” Fales said Monday.
Also attending Friday’s meeting will be neuroscientist Dr. Ineka Whiteman, an expert in Batten disease, Lori Brown, president of the Canadian Batten Disease Support and Research Association, and Andrew McFadyen of the Issac Foundation. McFadyen helped the government originally bring Brineura into British Columbia and has advocated for the start and discontinuation criteria for Brineura to be updated.
Whiteman, head researcher for the Batten Disease Support and Research Association in the U.S. and Australia, will come to the meeting in Victoria from New Zealand, where she resides.
She told the Times Colonist last week that B.C.’s health minister has said the final decision is not about money but, “frankly, I don’t know what else it could be about.”
Charleigh’s family and physicians have recommended the child stay on the drug because it has improved her quality of life and greatly relieved her symptoms, reducing multiple seizures a day down to none.
Whiteman added Canada’s Drug Agency notes in its own report that “evidence is limited regarding advanced disease and when to stop treatment.”
She said the government’s decision will “expedite” Charleigh’s death and fears she will become an experiment in what happens when the Brineura drug is discontinued.
B.C. Premier David Eby said last week that politicians should stay out of such decisions, which should be made by medical experts, but the family maintains the province has gone against the advice of Charleigh’s physicians, who know and see her regularly.
Charleigh’s parents wrote to Eby and Prime Minister Mark Carney on Friday, calling the decision to discontinue the drug coverage “negligent.” They asked that the decision be reversed not just as a matter of policy but as “a matter of basic decency.”
Brineura drug manufacturer BioMartin Pharmaceutical did not address direct questions on Monday of whether the company will provide or subsidize the drug on compassionate grounds.
The company repeated a statement from last week in which it said it strongly believes “treatment decisions should be made between children’s families and their healthcare providers” and encouraged healthcare officials to facilitate that “under all circumstances.”
Charleigh is the only child in B.C. with the disease and one of fewer than 20 in Canada.
Coverage decisions under B.C.’s Expensive Drugs for Rare Disease program, established in 2007, are based on the advice of a committee of independent experts using clinical criteria established by Canada’s Drug Agency. The province, which covers about 30 drugs under the program, said it has never provided ongoing coverage against the committee’s recommendations.
