MLA calls on B.C. to immediately resume coverage for girl with a rare neurological disease

Charleigh Pollock and her mother Jari Fales. Charleigh’s parents have been told her expensive treatment for a rare neurological disease will no longer be funded by the B.C. government.

Charleigh Pollock suffers from a rare neurological disorder called CLN2, or Batten disease. It’s fatal but she has been on an expensive drug for the past five years that has stabilized her condition.

Last week, the B.C. government informed Charleigh’s parents that her treatment will be coming to an end – and that has the province’s official opposition party crying foul.

“I think this is one of those where you have to look at it from a compassionate standpoint and ensure that you are supporting kids,” said Brennan Day, Courtenay-Comox MLA and critic for rural health and seniors’ health. “She is a nine-year-old.”

When Charleigh was diagnosed at the age of three, she had been experiencing multiple seizures a day. She was beginning to lose her ability to walk and talk, and her sight was quickly deteriorating.

“It is a devastating disease with no cure – it’s a terminal illness,” said Jari Fales, Charleigh’s mother.

Doctors then got her on a drug called Brineura. It’s expensive, costing roughly $1-million annually, but it quickly began to improve her health.

“Once we got her on treatment she stabilized,” said Trevor Pollock, Charleigh’s father.

The relentless seizures stopped. Now that Charleigh’s parents have been informed that her treatments will cease at the end of the month, they fear the worst.

“I can’t believe this is actually happening,” said Fales. “Let her live.”

Day wants to see the province immediately reverse course on it’s decision.

“I call on the government of the day to immediately resume coverage and give her the best life that she can,” said Day.

The province said Charleigh is no longer meeting the criteria for the drug treatment. Charleigh’s mother says her daughter’s entire medical team is in favour of her continuing the treatment and fear once she is off the drug, her health will rapidly deteriorate and the seizures will return.

“We have not heard, at least it’s extremely uncommon that a child would be taken off Brineura for the reason’s that we believe Charleigh has been taken off,” said Dr. Ineka Whiteman, head of research and medical affairs for the U.S.-based Batten Disease Support and Research Association.

Whiteman says the drug has proven itself in prolonging the lives of those in treatment while maintaining their quality of life.

CTV News requested an interview with the minister of health on Monday, but did not hear back.

“At the end of the day we pay for public health care and when we need it, we should absolutely expect it to be there for us,” said Day.

Charleigh has two more treatments left before the province defunds her care in less than three weeks.

“If we take away this drug, she is going to suffer horrific consequences,” said Fales.