The province's decision to withdraw funding for a terminally ill Langford girl’s life-sustaining treatment is under 'urgent review'.
Nine-year-old Charleigh, who is the only child in B.C. living with the rare genetic disorder Batten disease, has been receiving bi-weekly enzyme replacement treatment, funded by the province for over five years.
Her family was recently told the province would be pulling its funding, as Charleigh no longer meets the criteria for the drug Brineura.
Charleigh’s mom Jori Fales said she felt blindsided by the decision, especially as the treatment has “dramatically slowed down” the progression of the disease.
“They're deciding whether our child lives or dies,” Fales told Goldstream Gazette. “We don't have that decision … the disease decides that first, but they [the province] are quickening that decision.”
Charleigh’s last scheduled infusion treatment will be on Feb. 27, and without it, Fales has warned her daughter’s quality of life will deteriorate, with daily seizures one of many consequences.
The decision to withdraw funding under the Expensive Drugs for Rare Diseases program was made by medical experts based on clinical evidence and recommendations from Canada’s Drug Agency, explained Health Minister Josie Osborne in a Feb. 10 emailed statement, apparently standing by the resolution.
“The clinical criteria for when to use Brineura, including when therapy no longer has benefits and should be discontinued, have not changed,” she said.
But less than 24 hours later, Osborne made an about-face.
“I have directed the Ministry of Health to urgently review all of the facts of this case and determine whether continuing treatment may have quality-of-life benefits for Charleigh,” said the health minister.
The news has been cautiously welcomed by Charleigh’s mom, who first heard of the review when she was told by Goldstream Gazette.
“I'm feeling a lot of relief at the moment,” said Fales. “I’m hoping that it goes positively for Charleigh. But I'm still feeling scared. Without treatment, Charleigh will not have a good quality of life.”
When Fales shared the news of Charleigh’s plight on social media, thousands responded with messages of support. Many said they had contacted their MLA, calling for a reversal in the decision; support gratefully received by Fales and Charleigh’s father Trevor Pollock.
But the Langford mom is not just concerned for her own daughter, she is worried the decision will impact the other families in Canada with children living with Batten disease, of which there are less than 20.
“I don't want this happening in other provinces and territories in Canada.”
Before the minister's call for an 'urgent review', Charleigh's family and medical team – who support the treatment continuing – were readying themselves for an appeal.
But now Fales is hopeful the ministry will move fast with its urgent review of Charleigh’s case, as with only two treatment infusions left before the end of February, time is running out for the nine-year-old.
