When the province announced it would be cutting off funding for a nine-year-old Langford girl’s medication to treat her terminal disease, folks across the world sat up and took notice.
For six years, Charleigh Pollock has been receiving bi-weekly infusions of the drug Brineura, which slows the progression of the rare neurological disorder Batten disease.
The day before her last infusion treatment June 19, the Ministry of Health said it would be standing by a decision made in February that the Langford girl no longer meets the criteria to receive Brineura.
By removing Pollock’s access to Brineura, Dr. Ineka Whiteman, head of research and medical affairs for the Batten Disease Support Research and Advocacy Foundation, believes the province has effectively handed the nine-year-old a "euthanasia sentence."
"Withdrawing a life-sustaining treatment from a child who is still benefiting from that treatment is effectively an expediting of her death," she said, speaking to Goldstream Gazette from New Zealand.
Believed to be the first patient globally to be taken off the drug for reasons outside her family or physician’s control, the news has also sent shock waves through the international Batten community.
“I think there is a growing sense of trepidation that their children may come under the same scrutiny at their annual assessments,” said Whiteman.
The decision also came as a surprise to Whiteman.
“I had to pick my jaw up off the floor ... it came so out of left field,” she said. “None of us were expecting it … because the evidence to all of us was there that this child is still benefiting from treatment.”
While the ministry says Brineura is a drug that slows the decline of motor and verbal skills associated with the progress of Batten disease, Pollock’s mom Jori Fales has long argued that it has other benefits too, including giving her daughter a life free from daily seizures.
Pollock's own clinical team agrees. They believe she is still benefiting from treatment and have recommended that it should continue.
However, a review by Canada’s Drug Agency (CDA) found “insufficient evidence” to draw firm conclusions about the drug's impact on quality of life, seizure control and mortality outcomes.
The CDA also stated that it found no new evidence to justify changing the discontinuation criteria for Brineura, which were first established in 2019.
Because of this, the Expensive Drugs for Rare Diseases committee has stood by an assessment that found Pollock’s motor-language skills have declined to a point where she now meets the discontinuation criteria.
But Whiteman says the criteria is outdated and inadequate. The motor-language scoring tool, she notes, was developed 12 years ago during the drug’s original clinical trial.
“But now it’s 2025, we have over a decade of lived experience and real-world experience with Brineura,” she says, listing seizure control, extended length of life and cognitive engagement among the many benefits. “It's doing so much more than just maintaining motor language skills.”
“And it's important to note that no one is pretending that this is a cure. We know that these children are still declining. But what it's affording these children is a longer quality of life and more precious time with their family and in their community."
The way forward, Whitehead says, is to shift the responsibility for the decision-making process away from a “crude clinical score,” towards recommendations made by the child's own clinical team and the family.
“It shouldn't be down to a bureaucracy, a government agency and a politician sitting around a desk who have never met this child, to make a decision on the future of her life,” she said.
Whitehead has also expressed concerns about the CDA’s review, which she says has more questions than answers, leading to a decision “based on inconclusive evidence.”
One line in the report stands out for Whitehead. “Evidence is limited regarding advanced disease and when to stop treatment,” notes the CDA review.
“And you've just made a decision on somebody's life who as a minor, doesn't have the ability to make a decision for herself,” says Whitehead.
As for how quickly Pollock will decline once the enzyme treatment in her brain is depleted, Whitehead is unsure.
While the general life expectancy of the disease is around 10 to 12 years of age, for Pollock – who has been treated since she was three – the future is unknown.
“This is uncharted territory now,” she says. “We don't have any evidence at this point to determine what end of life really looks like for a treated child.
“Charleigh is the first example … and the world will be watching what's going to happen to her.”
Speaking to reporters Wednesday (June 25), B.C. Premier David Eby said he recognized the difficulties faced by both Pollock’s family and the medical experts who have had to make “profound and awful decisions.”
“It's important to acknowledge how profoundly awful this particular case is,” he said. “What these parents are going through with a terminally ill child, I would not wish on anybody, and I certainly pray that no other British Columbians have to face the kind of trials this family is going through.
“There is no happy solution here, and the best that we can do as government, in my opinion, is to allow the experts in this area – the physicians, the experts in these illnesses – to make the decisions around care that they need to make.”
Meanwhile, Cowichan-Malahat-Langford MP Jeff Kibble has called for a reversal of the decision, asking the federal minister of health to immediately direct the CDA to review the threshold for Brineura funding.
In a social media post Wednesday (June 25), the MP said he has been speaking with the federal minister of health’s office.
“Unfortunately, the Canadian Drug Agency is denying that there is new evidence and thresholds to consider,” writes Kibble. “They are pushing back against further review of updates to the medication cutoff criteria.”
He has also demanded the province continue funding medication for Pollock to allow for a federal review.
“The testimony of Charleigh’s family, medical team and specialist doctors is all new evidence that should weigh into the prescription of drugs desperately needed to keep a young girl alive and comfortable,” he continues. “The provincial Health Minister is setting a concerning precedent that will impact Batten disease patients across Canada.”
Support is stirring elsewhere. By Wednesday evening (June 25), an online petition calling for the province to overturn its decision had attracted the support of over 6,700 individuals.
But while politicians, doctors and advocates debate what happens next, Fales remains focused on her daughter who turns 10 on July 2, the day before what would have been her next round of infusion treatment.
"This never should have happened and now they (Ministry of Health) are being silent," Fales told Goldstream Gazette.
And the mom is refusing to give up, garnering support online by sharing photos and videos of her daughter.
"Does this look like a child in 'advanced disease decline' ... 'end of life' ... or 'not benefiting from her medication'?" writes the mom, alongside a list of reasons why her daughter "deserves better" from the ministry.
