A Message to Those Who Still Believe in Compassionate Care:

I’ve taken time to reflect on how to express the heartbreak and outrage I feel over the BC government’s decision to revoke funding for a life-altering medication—Brineura—for a vulnerable child, Charleigh, who is battling a relentless neurodegenerative disease.

This child was never promised a cure. Her parents never held such illusions. What they were given was hope—hope that this drug could ease her suffering, slow the disease’s progression, and offer her a better quality of life, even in the face of a shortened lifespan. That hope was grounded in science, compassion, and experience. AND IT WORKED but now, without warning, it’s being stripped away.

The government now claims that the Canadian Drug Agency’s (CDA) guidance supports this withdrawal of care, citing that her disease is too advanced. But even the CDA’s own framework says their recommendations are “non-binding” and that public drug plans may or may not choose to follow them. If that’s true—if this decision wasn’t solely about money or a cowardly adherence to bureaucratic protocol—why is Charleigh’s physician, along with the world’s leading Batten Disease expert, calling this decision “baffling”?

Dr. Ineka Whiteman, who has dedicated her life to Batten research, has been clear: “Looking at Charleigh’s quality of life right now and where she is in terms of the disease progression, there is no doubt in my mind that taking her off Brineura at this point will only lead to her quick demise.”
– Dr. Ineka Whiteman, Chek News

She went on to say that no other child in the world who is still benefiting from Brineura has had their funding revoked—only Charleigh. Why her? Why here?

Stated so well by Charleigh’s mother “The decision to end drug coverage for Charleigh should have been made by those who know her best—her medical care team, her family, and Charleigh herself”—not by a distant agency or bureaucratic panel. Anything less is an abandonment of both clinical judgment and human decency.

This is not just a policy failure—it is a moral failure.

Let’s call this what it is: a government-sanctioned decision that feels dangerously close to MAID-like thinking imposed on a child—without consent, without voice, and without mercy. If we allow this precedent, what’s next? Where does it end?

I speak not just as an advocate, but as a parent of two children also living with a rare, neurodegenerative disease. They, too, rely on a life-altering, possibly life-saving medication that BC’s drug program refused to cover. Through sheer perseverance and appeals, we managed to secure compassionate care coverage from the pharmaceutical company—but that coverage won’t last forever. My children are growing. They’re aging out of our drug plan. And then what?

Are they, too, expected to silently slip into decline because a faceless committee decided their lives weren’t worth the cost?

This is not about logic. This is not about protocol. Rare diseases demand nuance, flexibility, and humanity. They are not black and white. They evolve. And so too must our compassion and our policies.

We cannot build a society that is so rigid, so lacking in empathy, that we start weighing lives against spreadsheets. Today it’s Charleigh. Tomorrow it could be your child. Or mine. Or a loved one with Alzheimer’s, MS, or ALS—any disease deemed “too far along” to be “worth it.”

Charleigh speak but a few words. But she feels. Her pain, her comfort, her joy—those things are real. Parents and caregivers see the differences. They live it, minute by minute. But their voices are so often ignored in the clinical literature, the boardrooms, and the bureaucratic halls of government.

If we choose to dismiss observable, meaningful improvements in quality of life—simply because they aren’t measurable by cold metrics—then we’ve lost sight of what it means to be humane.

This fight is about more than one child. It’s about what kind of society we want to be.

SHARE THIS POST Let the BC Government and every drug agency across this country know that Canadians are watching. We will not be silent. We will not sit quietly while our most vulnerable are abandoned. We are louder than bureaucracy—and we will not allow this kind of cruelty to go unanswered.

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Times Colonist June 19th 2025

'A lot of tears:' Langford girl, 9, gets last publicly funded drug infusion

Mother Jori Fales says daughter Charleigh, who has a rare fatal condition, likely won’t see her 11th birthday due to the decision to stop covering the drug

A nine-year-old Langford girl received her last publicly funded infusion of an expensive drug for a rare fatal disease on Thursday, a day after the Health Ministry announced it would end coverage of the medication.

Charleigh Pollock has a neurodegenerative condition known as Batten disease, and for six years received bi-weekly infusions of the drug Brineura, which costs about $1 million a year and is intended to slow decline from the terminal disease.

Mother Jori Fales, standing outside Victoria General Hospital where Charleigh was receiving her final dose, said her daughter turns age 10 in two weeks, “and I know in my soul she will not see her 11th birthday” due to the decision.

“There’s a lot of tears this morning, but you know who’s smiling? Charleigh, she’s smiling,” said Fales, adding her daughter squealed with happiness all the way into the hospital.

In 14 days, the drug will have left Charleigh’s system and the child’s condition will start to rapidly decline, Fales said through tears. She said the last few months have been a roller coaster between heartache and anger. “There’s no way of really preparing to lose the medication that’s keeping your daughter’s quality of life going,” said Fales, who argues the decision to end the drug coverage should have been made by a member of the girl’s medical care team, her family and Charleigh.

“We wholeheartedly did not think that this was going to be the outcome after the last five months.”

Charleigh, who attends Happy Valley Elementary school, can’t walk but can say a few words and is full of joy every day, Fales said of her only child.

Health Minister Josie Osborne said Wednesday that Canada’s Drug Agency has completed its review and there is no new evidence to change its decision to discontinue coverage of the drug, given the advanced stage of Charleigh’s condition.

“Charleigh has met the discontinuation criteria,” said Osborne, noting how difficult the decision has been.

Osborne, who ordered an urgent review of the case after the family received news in January that coverage was being discontinued, said the decision is now final and was not based on the drug’s cost.

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.

Fales said it makes her “blood boil” to hear the minister talk about Charleigh’s advanced decline given that she has never met the girl. “Charleigh is not in advanced progression of her disease — that is simply not true.”

She said if anyone had visited Charleigh they would see that, in the family’s opinion, she’s thriving. She said her daughter’s physician and care team have recommended that the province allow Charleigh to continue receiving the drug. In the weeks to come, the family will be looking into next steps, including hospice care, Fales said.

Charleigh is the only child in B.C. and one of fewer than 20 in Canada with Batten disease, which began to affect her at the age of three, when she suffered seizures and began to lose her ability to walk and talk.

Brineura is the only drug approved to treat the form of the disease that Charleigh has, known as ceroid lipofuscinosis type 2 (CLN2).

Funds have poured into an online fundraising page to help the family, but Fales said she thinks continuing to access the drug privately is more complicated than just paying for it, and she’s not sure it’s possible.

Fales said the priority now is to make every day count with Charleigh. “We love Charleigh so much, and she didn’t deserve this disease,” she said. “She didn’t deserve this outcome.”