Information for medication for Charleigh to be forwarded for review: Premier

B.C.’s premier says information presented to the health minister on Friday about the medication for a terminally ill 10-year-old will be forwarded to experts for review, but continues to make no promises on resuming funding.

Charleigh Pollock is the only child in B.C. with Batten disease, a rare and fatal neurological disease. She was previously receiving Brineura injections to manage her symptoms, but on June 18 the province ended funding for the drug, with only one day notice for the final treatment.

READ PREVIOUS: Medication funding for Charleigh, terminally ill 9-year-old, discontinued effective June 19

The decision was made after a review by Canada’s Drug Agency into the effectiveness of the treatment after the disease progression has passed a certain point, which Charleigh’s has.

However, Charleigh’s mom Jori Fales has maintained that new evidence that was not reviewed by the CDA shows the drug continues to be effective after that point.

Fales also says that none of Charleigh’s medical team nor experts on Batten disease were consulted in the CDA’s review.

Fales and Dr. Ineka Whiteman, a neuroscientist and Batten disease expert, met with B.C.’s health minister Josie Osborne on July 4 to present the evidence.

“If there’s additional evidence, if there’s additional information that was not considered, it should be considered,” Eby said in a news conference on Monday.

“The Minister of Health committed to the family she would make sure that that information was provided to the committee of physicians and experts that makes these decisions.”

In a statement to CHEK News, Osborne reaffirmed that the information provided in the meeting would be forwarded.

“They brought information to this meeting that I have provided to the Ministry’s committees of experts and physicians in order to confirm whether it was previously considered and is relevant to this case. Treatment decisions should not be made by politicians,” Osborne’s statement said.

“If evidence exists that continuing treatment would still provide benefits for cases like these, I encourage the drug manufacturer to immediately submit it to Canada’s Drug Agency and to request that the discontinuation criteria – which all provinces that provide coverage for Brineura have adopted – be revised.”