The B.C. government says it is restoring funding for a drug used to improve the quality of life for a 10-year-old girl with a rare, terminal illness.
It comes after a group of experts on Batten disease in the United States penned a letter to B.C.’s health minister and premier, strongly opposing the decision to withdraw funding for Charleigh Pollock.
“I spoke to Charleigh’s family earlier this evening. I confirmed to them that I have reinstated Charleigh’s Brineura coverage and that coverage will be available to them for as long as the treating physician and the family deem it appropriate,” Health Minister Josie Osborne said in a statement.
“I continue to strongly believe that decisions about care should be made by health experts to ensure they are based on the best available evidence. The letter I received today from Batten disease experts confirms there is significant disagreement between health experts on Brineura, and it is not acceptable that Charleigh and her family suffer as a result of that disagreement about the use of Brineura for Batten Disease.”
The letter was signed by the Clinical Directors from the U.S. Batten Disease Clinical Centers of Excellence and Batten Disease Clinical Research Consortium and asks the B.C. government to review the current discontinuation criteria.
Pollock has a neurological disorder called Batten disease that leaves her with recurring severe seizures and mobility loss, and will eventually cut her young life short.
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On June 18, Charleigh’s family was informed that government funding of a drug called Brineura, which her family said has stabilized her condition and radically improved her quality of life since her 2019 diagnosis.
The drug is expensive, carrying an annual bill for the twice-monthly infusions of about $1 million.
Charleigh’s family appealed to the B.C. Ministry of Health to reverse the decision and consider more research and speak to more experts.
However, the decision was not reversed.
The doctors and researchers who wrote the letter say their international colleagues and collaborators Angela Schulz MD and Miriam Nickel MD in Germany were instrumental in developing the clinical outcome measures used to track disease progression in CLN2 disease, which is a type of Batten disease.
“Drawing from our collective and unparalleled expertise in CLN2 disease, we strongly oppose the decision to withdraw funding for life-sustaining ERT from Charleigh Pollock and call for a review of the current discontinuation criteria,” the letter reads.
Prior to 2017, the late-infantile form of CLN2 disease was universally fatal, however, the introduction of intracerebroventricular ERT, which is the medication Pollock was given, “fundamentally altered the disease trajectory.”
The experts said the treatment “has demonstrably prolonged survival, slowed progression, improved seizure control, and enhanced quality of life.”
The B.C. government has always maintained that the decision to stop funding Charliegh’s medication was never about money but a panel of experts decided the drug was not helping Charleigh anymore.
“This is a really awful case,” B.C. Premier David Eby said on Thursday. “This is a beautiful child and a family facing a horrific diagnosis. Medical experts are disagreeing about the best course of action.
“We received a letter this morning from slightly more than a dozen experts in Batten disease from the United States who wrote to the (health) minister and I expressing that their perspective on this medication is that it would continue to provide benefit for patients, including for Charleigh, that are at the stage that she’s at.”
Eby said Health Minister Josie Osborne will likely have more to say on the matter on Friday.
The letter from experts said they are concerned by the clinical and scientific justification used by B.C.’s ministry of health to terminate treatment for Charleigh.
Andrew McFadyen, executive director of the Issac Foundation in Toronto, which is a patient advocacy organization dedicated to supporting individuals living with rare diseases, was one of the experts who signed the letter to Eby and Osborne.
He said they provided the same information to Osborne when they met with her a few weeks ago and he was appalled the government stopped funding the drug in the first place.
“So while this may not be overly new information, I think the idea that every single Batten disease expert in the world has signed on to say, we’re unified, we agree, we’re imploring you to change this decision, but we’re also imploring you to look at developing new criteria so that this situation doesn’t have to take place for other children across the country, but also around the world, like it did here now,” McFayden added.
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