June 19 will be a significant day for nine-year-old Langford girl Charleigh Pollock – it will be the last day she receives province-funded treatment for her terminal illness.
Pollock is the only child in B.C. living with the rare genetic disorder Batten disease. She has been receiving bi-weekly enzyme replacement treatment, funded by the province for over five years, costing around $1 million a year.
Her mom Jori Fales says the drug Brineura has dramatically slowed down the progression of the disease, describing it as “life-sustaining.” She says it has also reduced the number of daily seizures experienced by her daughter from “almost a hundred a day down to none.”
The Ministry of Health says the drug Brineura “slows but does not stop the decline” in motor and verbal functions for the patient as the disease progresses. It is not a life-saving treatment, nor is it an anti-seizure medication, explained the ministry.
The nine-year-old is receiving and will continue to receive anti-seizure medication, added a ministry spokesperson.
In February, the family were told Pollock no longer meets the criteria for Brineura and funding would end that month.
Several reprieves followed, with the ministry agreeing to extend funding until June 19 to allow for a review of Pollock’s case.
Fales has maintained throughout that the clinical criteria used for the discontinuation of Brineura are outdated and need to be updated immediately. Something she hoped would be considered as part of the review.
Without the drug, the mom says her daughter faces “a rapid physical decline, a return of her daily seizures and a horrific quality of life.”
But Canada’s Drug Agency (CDA) review, published June 13, supports the original decision to end funding.
According to the Ministry of Health, the CDA’s report has found the discontinuation criteria in Pollock’s case have been met and that the new evidence published in the last six years is consistent with the 2019 recommendations.
“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 Minister of Health Josie Osborne.
The CDA also notes there is “insufficient evidence” about the potential benefits of Brineura on quality of life, seizure control, and mortality outcomes, to make definitive conclusions.
Osborne says Pollock’s case has been the most challenging she and her team have worked on.
But this is the “final decision,” the minister told reporters at the legislature June 18.
“I empathize deeply with Charleigh's family, and my heart goes out to them,” she said.
The review process for funding under the Expensive Drug For Rare Diseases program is “rigorous, fair and evidence-based” said Osborne, who also emphasized the cost of the medication has had no bearing on the recommendations made by the independent medical experts.
“No matter how challenging and difficult it can be, we must follow the evidence and recommendations of medical experts who have clinical experience with rare diseases like this,” she said.
Fales has said she is processing the news and will be issuing a statement on June 19, the last day her daughter will be given the drug Brineura.
