Vancouver Island family heartbroken as B.C. stops funding $1M drug for girl with terminal condition

A Vancouver Island family is in shock after learning the British Columbia government will stop funding an extremely expensive medication their young daughter needs for a rare genetic condition. 

Nine-year-old Charleigh Pollock is the only person in B.C. with Batten disease, or neuronal ceroid lipofuscinosis type 2 (CLN2).

It's a rare and terminal genetic disorder that causes multiple seizures daily, eventually causing brain damage. 

Pollock's mother, Jori Fales, said the family is still processing the news, announced Wednesday, that the B.C. government will pull funding for Pollock's access to Brineura, a $1-million-per-year medication which is given through an infusion of fluid to the brain to slow the progression of CLN2.

"Emotions have gone from sheer heartbreak to anger to sadness; it's just been a roller-coaster the last 24 hours," Fales said.

Thursday marked Pollock's last infusion of Brineura.

WATCH | B.C. pulls funding for young girl's treatment:

Family upset after province discontinues medication funding for terminally ill child

12 hours ago

Duration 2:20

A Vancouver Island family is angry the B.C. government will no longer pay for expensive medication for their daughter's rare disease. The province says cost is not a factor in its decision. Meera Bains reports.

Fales called the government's decision to pull funding with one day's notice before the last infusion "a little heartless."

She said her daughter has been let down.

"At the end of the day, it should have always been the decision of her medical care team, and her family and Charleigh. And none of that has happened here."

On Thursday, B.C. Minister of Health Josie Osborne said it was a tough decision to end the funding.

She said the cost of the medication had nothing to do with the reason the funding was pulled, but that it was determined Pollock's condition had deteriorated to the point where she met "discontinuation criteria" for Brineura.

"Clinical evidence shows that once a patient has declined in their motor and language functions by a certain amount, Brineura no longer has the benefit of slowing down the progression of the disease, although patients can continue to live on into mid-adolescence," Osborne said.

Fales denied that her daughter's condition has worsened.

"Charleigh is not in advanced progression of her disease. This is simply not true," she said.

Dr. Ineka Whiteman, the head of research and medical affairs for the Batten Disease Support and Research Association U.S. and Australia and head of the Batten Disease Global Research Initiative, called the B.C. government's decision "appalling."

She expressed frustration with the provincial government's emphasis on criteria to discontinue the medicine, which she said is based on old clinical trials.

She added other families around the world are becoming concerned their access to the medication may also be reconsidered.

"This is not just about a single child. This is really setting a very, very dangerous precedent."

Fales said she plans to share her daughter's journey and advocate for others dealing with the disease.

"There's always the hope for a cure one day. It obviously won't be in Charleigh's time, but we always, always remain [hopeful] that other families will not have to go through this."