Charleigh Pollock, a nine-year-old girl in British Columbia, received the last infusion of a million dollar drug that treats her rare disease. On June 18th, the province’s Ministry of Health announced it would no longer cover the medication.

Pollock is the only person in British Columbia with Batten disease, also known as neuronal ceroid lipofuscinosis type 2 or CLN2. The disease causes multiple daily seizures, leading to progressive brain damage and death.

While there is no cure for the disease, when Pollock was three, the province announced it would cover a medication called Brineura, which slows the progression of the disease. The medicine costs roughly $1 million per year.

Health Minister Josie Osborne said the decision wasn’t based on cost but recommendations made by medical experts to stop coverage. Osborne said that once a patient develops a certain amount of motor and language impairments, the drug no longer slows the progression of Batten disease.

"Last year, it was determined that Charleigh's condition had progressed to the point where she met the discontinuation criteria for Brineura," said Osborne.

Experts criticize the decision

The Ministry of Health appears to be basing the decision on criteria published in 2019 that recommend discontinuing the drug after a certain amount of decline in motor and language ability.

“She is the first child in the world to be denied funding based on criteria like this. Ineka Whiteman, the head of the Batten Disease Global Research Initiative, explained in a CBC Radio interview. She called the criteria “rigid,” “outdated,” and aren’t fit for use in the real world.

Andrew McFadyen, executive director of the Isaac Foundation that advocates for families with children who have rare diseases to help them access medicine, agreed. McFadyen consulted on the original start and stop criteria for the drug.

He told C-Fax 1070 that they went with the rigid criteria, instead of spending another six to nine months to working on more detailed criteria, to ensure kids have access to the drug and revisit it in the future with more evidence. “We haven’t seen any sort of revisiting of this criteria over time,” he said.

Fast forward to 2025. Is there any new evidence that supports halting treatment?

“We have years of real world evidence now […] to show this drug is helping far beyond just a simple motor and language score,” said Whiteman. “We know that this is increasing lifespan, increasing quality of life.”

A report released in June 2025 by Canada’s Drug Agency, there is “a scarcity of data to inform treatment continuation.” The Drug Agency wrote that both clinical experts and caregivers “underscored the importance of shared decision-making in initiating and discontinuing treatment.”

The B.C. Ministry of Health is not adhering to this guidance. Pollock’s mother, Jori Fales, wrote on Facebook that her medical team thinks that she should continue receiving the medication. "Anything less is simply cruel and wrong," Fales wrote.

Is cost the real reason the drug is being withheld?

“I cannot see how it could be anything other than cost, when we know this child is still benefiting,” said Whiteman.

What happens now?

If the Ministry does not restore funding for the drug, Pollock’s seizures will return and her disease will progress. Whiteman worries it will lead to a “slippery slope” where other jurisdictions will use the same faulty reasoning to deny patients treatment for Batten disease.

Are other countries basing their health policies on Canada’s? The U.K. is following Canada’s disastrous lead with a bill proposing medical assistance in dying (MAiD) .

Disabled advocates, the United Nations Committee on the Rights for Persons with Disabilities, bioethicists, and doctors have all criticized Canada’s euthanasia regime. Rosemary Kayess, the United Nations’ committee’s vice chair asked government representatives to explain how Track 2 MAiD differed from “state-sponsored eugenics.”

Disabled people living in legislated poverty have raised legitimate concerns over coercion stemming from a lack of access to treatment and accommodations. However, in the public discourse, these concerns are often dismissed as fear-mongering and conspiratorial.

Now, there’s a high-profile case of the government denying a patient treatment, that her doctors and caregivers believe is necessary, leaving her to die. “It’s effectively like a euthanasia sentence at this point,” said Whiteman.

If you’re interesting in learning more about Charleigh Pollock, I recommend reading:

• BC Government MUST Reinstate Funding For A Disabled Child's Medication | Gabrielle Peters

• Why B.C. stopped funding a $1M drug for a girl with a terminal condition | CBC Radio - On the Coast with Gloria Macarenko

I am also filing access to information requests with the B.C. Ministry of Health to understanding why they stopped funding the drug.

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I'm a science and health journalist who is disappointed and fed up with the lack of news coverage surrounding Long COVID, ME/CFS, chronic illness, and disability issues in Canada. I decided to start this newsletter to provide a home for the news stories that don’t get coverage in Canada’s news ecosystem, which lacks outlets for good, science-based reporting.