Vancouver Island girl’s medical team to meet with Ministry of Health

The mother and doctors of a nine-year-old girl with a terminal disease will meet with B.C.’s health minister this week after the province pulled funding for the only drug that can help her live a longer life.

In June, the Ministry of Health explained that it is discontinuing its coverage of Brineura, one of the only treatment methods for Ceroid Lipofuscinosis Type 2 (CLN2), otherwise known as Batten disease. While it is not a life-saving drug, it aims to slow the progression of the disease.

The Ministry explained that Brineura has clear criteria for initiation, continuation, and discontinuation, and the child has deteriorated to the point where there is no clinical evidence that continuing treatment would have further benefits. The cost of the drug is not a factor when considering whether to cover treatments, the Ministry asserted.

Critics say the province’s claims that nine-year-old Charleigh Pollock is no longer getting any benefit from taking Brineura are not true.

Experts contend that while Brineura won’t save Charleigh’s life, it may extend it. And her family says it’s certainly helped improve her quality of life while suffering from Batten disease.

Courtenay-Comox MLA and Conservative Critic for Rural and Senior Health Brennan Day says the governing BC NDP is ignoring crucial new information.

The province insists it’s following the evidence on the heartbreaking decision. But Day says it’s been looking at outdated criteria, and new evidence showing the ongoing therapeutic benefit of the drug wasn’t included in the review.

“They’re using data that’s seven years old at this point to inform their decision. And, unfortunately, that’s not acceptable in these rare cases. The science has moved along, and they’re not following recommendations of either the family or of the international experts on this issue,” Day claimed.

Day says advocates are also worried the province’s current position could set a precedent for other kids dealing with this rare and terrible disease.

“It’s the first case internationally where somebody has gone off of the drugs without informed consent from the family, in terms of when is the right time to pull the drug when it’s no longer showing to be effective… That has always been up to — internationally and around the world — the family and their care providers determine when that is alright,” said Day.

The child’s mother, Jori Fales, and doctors are set to meet with Health Minister Josie Osborne Friday evening to plead their case.

President of the Batten Disease Support and Research Association of Canada Lori Brown, who will attend the meeting, says she wants to impress on Osborne that the original review recommended that the patient’s medical team and parents should have been involved in any decision to discontinue Brineura.

She says she doesn’t know how the meeting will go, but she’s cautiously optimistic that Charleigh’s team won’t have to escalate its cause.

“This has already gone on for five months, and to go through court, we know that that’s going to take even longer, so hopefully it would not come to that… I hope that the right conclusions come from this meeting, and we won’t have to take it to that level for any reason,” said Brown.

—With files from Charlie Carey