Shock, devastation, sadness and fear are some of the many emotions the family of Langford girl Charleigh Pollock have experienced in the 24 hours after they received the news the province is pulling funding for treatment of the nine-year-old’s terminal illness.
“It’s a roller-coaster,” says mom Jori Fales, speaking to Goldstream Gazette June 19 from Victoria General Hospital, the day her daughter received her last province-funded infusion of the drug Brineura.
“Today the feeling is anger.”
Pollock is the only child in B.C. living with the rare genetic disorder Batten disease. She has been receiving the bi-weekly enzyme replacement treatment, funded by the province for nearly six years, costing around $1 million a year.
The day before Pollock’s last infusion treatment, the Ministry of Health said June 18 it would be standing by a decision made in February that the nine-year-old no longer meets the criteria to receive Brineura.
Fales says she only found out about the decision from her daughter’s physician minutes before she received a flurry of messages from journalists, offering the family their condolences.
“It's sad to know that there was already a press conference planned before the family was even informed – it’s all been very impersonal,” she said, adding that she has never spoken to anyone from the Ministry of Health, including Health Minister Josie Osborne.
Intended to slow the progression of the disease, Brineura has given Pollock a life free from daily seizures, says Fales.
However, a review by Canada’s Drug Agency (CDA), found “insufficient evidence” to make definitive conclusions about the potential benefits of the drug on quality of life, seizure control, and mortality outcomes.
The ministry has also made it clear Brineura is not an anti-seizure medication.
The CDA’s review also found no new evidence that justified changing the discontinuation criteria for Brineura, first established in 2019 – something mom Fales has described as "outdated."
Ultimately, the Expensive Drugs for Rare Diseases expert committees found the nine-year-old’s condition meets the discontinuation criteria.
“Meaning there was no evidence to support the ministry continuing to provide coverage for Brineura, given the advanced stage of Charleigh’s condition,” said a statement by Osborne.
Fales says hearing the minister talk about her daughter’s condition made her “blood boil.”
“I need people to know she is not in an advanced state of her disease, and she is in a stabilized position due to her medication that she's been receiving,” she said. “Charleigh hasn't had seizures in years.”
With her final dose of Brineura now complete, Pollock’s future is uncertain, says Fales, who disagrees with the ministry that the drug is not effective in managing her daughter’s seizures.
“Unfortunately, time will tell, and everyone is going to see exactly what's going to happen to Charleigh once this medication is removed,” said Fales. “She's being made an example, and it's unfortunate.”
She says the timeline for her daughter’s life expectancy has now been “exceptionally speeded up.”
“And it wasn't even our choice,” says Fales, who believes Pollock’s medical team should have been at the forefront of the decision-making process.
“They still recommend she continues to receive treatment.”
Following the news, the family has been met with a wave of support from the public. Hundreds of comments online from folks expressing disbelief at the ministry’s decision.
The family of Oak Bay's Simon Hoskins, who lives with the rare progressive disease mucopolysaccharidosis (MPS) Type IV, has also spoken out in support.
Like Pollock, Hoskins receives province-funded treatment – a synthetic enzyme infusion that helps slow the progression of his disease, allowing him “to retain the best quality of life possible.”
“(Charleigh) and her family deserve so much more, we are holding them close as the news hits so very hard today,” the Hoskins family wrote in an emotional Instagram post.
MLA for Courtenay–Comox and opposition critic for rural and seniors health Brennan Day has also slammed the province’s decision, calling it “morally indefensible.”
“It’s appalling that this government believes recreational drug programs are a higher priority than giving a young girl a fighting chance,” he said in a statement, calling on the province to immediately reverse the decision.
The public support has brought some comfort to Pollock’s family.
“We're just very grateful for everyone's support and love, and they're very appreciated,” said Fales.
As for what’s next for the family, Fales says they need time to process and accept what lies ahead.
“And we'll continue to make Charleigh our priority,” she said, explaining that her daughter has been shielded from what is happening.
“Just like every day, she wakes up with a smile on her face and is a happy little girl – today is no different.”
