‘There’s been a cost put on our child’s head’: B.C. to cut off drug treatment for 9-year-old girl with rare disease

West Shore parents have a girl with a rare disease who has been told some devastating news. The province is no longer going to pay for the drug she's on.

Nine-year-old Charleigh Pollock suffers from CLN2, also known as Batten disease. It’s a rare and fatal genetic disorder that results in multiple seizures on a daily basis and will eventually lead to the loss of her life.

When Charleigh was three years old, she began to have multiple seizures and was eventually diagnosed with the disease. At the time, her parents felt helpless not knowing what was happening to their young daughter.

“The seizures were relentless,” said Jori Fales, Charleigh’s mother.

She quickly began losing her ability to walk and talk, and her quality of life was in rapid decline. Within months of her diagnosis, doctors were able to prescribe her a new drug called Brineura.

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

The seizures stopped and her quality of life drastically improved.

“She is filled with so much joy and love,” said Fales.

On Tuesday, Charleigh’s parents received some devastating news from their doctor that the province will no longer be funding the expensive drug that costs roughly $1 million annually, helping to stabilize their daughter’s condition.

“She has currently two more treatments left and by the end of this month, no more treatments will continue,” said Pollock.

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

Her parents fear that those multiple daily seizures will soon return, and her health will fall back into a fast decline.

In 2017, the U.S. Federal Drug Administration approved the use of Brineura, and in 2018, Health Canada followed. It’s still too early to say what the long-term effects of the drug will be, but early indications show it is helping those dealing with Batten disease.

“What we know for sure is that the quality of life is significantly improved with Brineura treatment,” said Dr. Ineka Whiteman, head of research and medical affairs for the U.S.-based Batten Disease Support and Research Association.

A person diagnosed with Batten disease will live on average to roughly nine to 12 years of age. Dr. Whiteman says researchers are already seeing positive effects from the drug.

“Brineura is not a cure as such, but what we do know is that it is slowing the disease progression significantly and increasing the life expectancy of the child,” said Dr. Whiteman. “More importantly, it’s extending the quality of life and improving the quality of life that each treated child has.”

B.C.’s Ministry of Health said it has been “an incredibly difficult journey for the family,” in a statement to CTV News.

“The funding provided at the time of starting the drug, and throughout the monitoring process, is based on clinical criteria as recommended by the Canadian Drug Expert Committee. The criteria have not changed,” the ministry wrote.

For Charleigh’s parents, that answer brings little comfort as they say their daughter’s quality of life is sure to suffer, potentially leading to an earlier than expected death without the drug treatment.

“I think we all know that this has something to do with money and that’s just so frustrating that there’s been a cost put on our child’s head,” said Fales.

CTV News asked the Ministry of Health if it would consider reserving its decision, and the ministry did not answer the question.

In Canada, there are fewer than 20 children living with Batten disease. Charleigh is the only one in British Columbia.