B.C. not funding costly treatments for 9-year-old with rare disease

A Vancouver Island family is heartbroken after learning the B.C. government won’t continue funding a drug that her parents say is keeping her alive.

A Vancouver Island family is heartbroken after learning the B.C. government won’t continue funding a vital drug treatment for Charleigh Pollock that her parents says is keeping her alive.

Health Minister Josie Osborne announced the province’s decision Wednesday afternoon.

“There is no evidence to support changing the discontinuation criteria, or to support the ministry continuing to provide coverage for Brineura given the advanced condition and stage of Charleigh’s condition,” Osborne said.

Brennan Day, the B.C. Conservatives’ critic for rural health and seniors health, pounced on the decision.

“The health care authority should be ashamed,” said Day.

Charleigh suffers from Batten disease, a rare neurodegenerative disorder that leads to the progressive loss of brain function and will ultimately lead to her death.

Related: B.C. to cut off drug treatment for 9-year-old girl with rare disease

She was diagnosed at the tender age of three after Charleigh began suffering from relentless seizures. She was put on the drug Brineura, which slowed the progression of the disease and stopped the seizures completely.

“Their journey, like all families that have a child diagnosed with a rare illness, is one that is filled with uncertainty, fear and endless advocacy,” said Osborne.

In February, the province informed Charleigh’s medical team that she would no longer be covered for the expensive drug, which costs $844,000 per year. The young girl’s medical team then appealed that decision, and the health minister stepped in and extended those treatments while the appeal process was ongoing.

CTV News spoke with Jori Fales, Charleigh’s mother, last week after being notified by the government that a decision would be coming out before June 19.

“It’s my last mother’s plea,” said Fales. “This is a crucial decision that affects my daughter’s life and our family, and I just want them to make the right decision.”

Fales understandably was not available for comment Wednesday.

B.C.’s Expensive Drug For Rare Disease Committee was tasked with making the decision that ultimately found Charleigh no longer met the criteria for the drug coverage.

During that process, the committee asked the Canada Drug Agency to do an evidence-based review of Brineura. The findings in that report gave Fales hope that the decision would go in Charleigh’s favour.

“Insufficient data to establish discontinued criteria,” said Fales last week while reading quotes from the report. “Without the appropriate data to help inform stopping the drug, continuation should truly be a clinical decision made with the health care team and the families involved.”

The critic for rural health said he understands that tough decisions have to be made, but question the way the province went about that appeals process, not communicating with the family for months.

“The up and down decision making and the lack of transparency from the health authority around this is truly appalling,” said Day.

Thursday will be Charleigh’s final Brineura infusion. After that she will no longer have access to the life-preserving drug.

“Brineura is the only defence against this horrible disease, so if you take it away she will decline, lose more skills and leave us,” said Fales.