A Langford mom says she feels “blindsided” by the province’s decision to end funding for her terminally ill daughter’s life-sustaining treatment.
For over five years, nine-year-old Charleigh – who lives with the rare genetic disorder Batten disease – has been receiving bi-weekly enzyme replacement treatment, funded by the province.
Her mom Jori Fales says the treatment has “dramatically slowed down” the progression of the disease.
Each year, funding of the treatment is reviewed by the province. Fales says she and Charleigh’s father Trevor Pollock, expected the funding to continue as their daughter’s condition has “not declined in years.”
“She's thriving on this medication,” she said.
But in early February, the family was told the province’s funding was to be discontinued, as Charleigh no longer meets the criteria for the drug Brineura.
“They're deciding whether our child lives or dies,” said Fales. “We don't have that decision … the disease decides that first, but they [the province] are quickening that decision.”
According to Fales, the decision has been made as Charleigh is showing no signs of improvement, but the Langford mom says that is an impossible ask of someone with a terminal illness.
“Charleigh is stabilized, she’s not going to improve, that’s not how a degenerative disorder works,” said Fales. “She's been stable for years, which is all we can hope for and be happy with, because it is a terminal illness.
“She has a great quality of life and she is thriving, that's more than any Batten parent can ask for."
Charleigh’s last infusion treatment will be on Feb. 27, and without it, Fales says her daughter’s quality of life will be “severely impacted.”
“At the moment, Charleigh is seizure free and her organs are not shutting down, or all the other nasty things that she will eventually succumb to,” she said. “So our life will drastically change, and unfortunately, it'll change the most for Charleigh and she will endure suffering.”
After sharing the news on social media, Fales was met with a wave of support and outrage about the province’s decision.
“My phone has not stopped blowing up with people asking how to help the situation,” said Fales.
To help, Fales says people should continue to share her social media posts and write to their MLA.
“To be honest, just the emotional support from the public means a lot,” she said.
Less than 20 families in Canada are affected by Batten disease, says Fales, who feels concerned the province’s decision could have a knock-on effect.
“I'm feeling the weight of the world right now for my daughter, but I'm also feeling it because I'm concerned that if British Columbia discontinues it, I don't want this happening in other provinces and territories in Canada to other children,” she said.
Health Minister Josie Osborne said in an emailed statement she has 'deep empathy' for Charleigh's family.
“Having a child with a rare disease is an unimaginable journey, filled with uncertainty, fear and endless advocacy," she said.
“Coverage decisions under the Expensive Drugs for Rare Diseases program are made by medical experts based on clinical evidence and recommendations from Canada’s Drug Agency,” continued Osborne. “The clinical criteria for when to use Brineura, including when therapy no longer has benefits and should be discontinued, have not changed.”
Unable to comment on the details of the case, Osborne said she hopes families "facing incredibly difficult situations" similar to Charleigh's, continue working with their care team to provide updates on their children's conditions to the ministry’s Expensive Drugs for Rare Diseases review committee.
For now, all the family and Charleigh’s medical team can do is appeal the decision, which they have 60 days to do.
“It's very time-sensitive because we don't want her to miss any doses, which she will if her appeal isn't heard quickly,” said Fales. "This shouldn't be decided by someone that is not in Charleigh's life."
