B.C. Health Minister Josie Osborne has directed staff to investigate the case of a terminally ill Langford child who is weeks from losing provincial funding for a drug that keeps her alive.
The family of nine-year-old Charleigh Pollock, who attends Happy Valley School, was told last week that funding will soon end for the enzyme-replacement infusions she receives bi-weekly for a rare, progressive and fatal neurodegenerative disorder known as Batten disease.
The annual cost to the province for the Brineura infusion for Charleigh — the only child in B.C. with the disease and one of fewer than 20 in Canada — is about $1 million.
A committee recommended this month ending the funding, with the final infusion on Feb. 27. Two weeks after that, Charleigh faces “rapid deterioration, irreversible loss of function and ultimately death,” mother Jori Fales said.
On Tuesday afternoon, Osborne said in a statement that she has directed ministry staff to “urgently review all of the facts” and determine whether treatment has quality-of-life benefits for Charleigh.
Fales said Charleigh’s physician team has recommended she continue to receive the transfusions of Brineura, the only pharmaceutical approved to treat what’s formally called ceroid lipofuscinosis type 2 (CLN2).
Andrew Villani, executive director of communications for BioMarin Pharmaceutical Inc., which makes Brineura, said the company was aware the B.C. government system would no longer fund the “vital” treatment, but offered no comment on whether the company would subsidize the drug cost.
Charleigh was three when she began to have unexplained seizures, and quickly began losing her ability to walk and talk.
Once she was diagnosed, Fales and Charleigh’s father, Trevor Pollock, fought for funding for Brineura, which she’s been taking for five and a half years.
Her parents believed Charleigh would be able to stay on the drug as long as she is benefiting from it, which her family says she is — for one thing, she no longer has multiple seizures a day.
However, the Canadian Drug Expert Committee that decides on funding “feels she’s not meeting the criteria anymore, and that is just untrue, she is thriving,” said Fales.
The committee, made up of drug experts as well as lay members, makes reimbursement recommendations to participating federal, provincial and territorial publicly funded drug plans. It’s appointed by and reports to Canada’s Drug Agency.
The Health Ministry said the goal of treatment with Brineura is to slow a patient’s decline in walking and speaking until they reach the end stage of the disease.
“Just because Charlie can’t walk anymore does not give anyone the right to end her life,” said Fales. “I’m sure there’s millions of people that are unable to walk in this world and have quality of life.”
Charleigh has more good days than bad and is an “extremely happy” child, said her mother.
“She wakes up with a smile on her face,” said Fales. “She reaches for her parents. She laughs. She giggles. She loves to go swimming. She interacts with all her peers at school.”
Fales said it’s hard enough raising a terminally ill child knowing she will lose her one day, “but the thought of losing her much sooner than needed is unfathomable.”
“I’ve gone through shock to sadness to anger to immediately motivated to fight this.”
Fales said about 400 children are on the drug worldwide, and Charleigh is the first child ever to be denied funding.
She said she knows her daughter can’t be on the drug forever, and if she was bedridden and in decline, “we obviously would make the choice to not continue treatment.”
“[But] it should be the decision of her medical team, her parents, to discontinue treatment, not a committee that is trying to save money,” said Fales. “That’s what’s happening.”
In a letter to Osborne dated Tuesday, Courtenay-Comox Conservative MLA Brennan Day, critic for rural health, urged the minister to reverse the funding decision to “prevent a tragic and entirely avoidable outcome.”
Day, in a phone interview, said as the father of a seven-year old, he found his conversation with the family especially tough.
He’s asking the province to meet with the family and medical team so they can present Charleigh’s case directly, especially given the lack of clarity around the committee’s decision and the criteria.
“Furthermore, Charleigh is now the first child in the world to have this treatment discontinued — an alarming distinction for British Columbia, and your ministry, to hold,” Day said in his letter, arguing that in a publicly funded health-care system, the $1-million annual cost should not be a deciding factor in “whether a child lives or dies.”
Fales said she wasn’t prepared to have to fight to keep her daughter on the drug, imagining the decision would come from Charleigh’s medical team.
“Also, I know my daughter better than anyone, and I know she’ll let me know when it’s time for her final rest,” said Fales. “And it is not even close.”
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