Province ends all hope for coverage of rare disease drug for Charleigh Pollock

Renewed hope has been shattered once again as the province rejects funding for rare disease treatment needed for 9-year-old Charleigh Pollock.

VICTORIA — Hope has turned to heartbreak again for the family of Charleigh Pollock. Health Minister Josie Osborne confirmed on Friday that coverage for the medication to treat the girl’s rare disease has been discontinued again, leaving Charleigh’s mother Jori Fales devastated.

“How can I look my daughter in the eyes and tell her that we failed her?That the system failed her?” said a sobbing Fales. “I just feel like we’re under this ticking time bomb.”

Charleigh suffers from Batten Disease, a rare and fatal genetic disorder that causes seizures. Her family says the girl’s quality of life has been improved significantly by the drug Brineura, which costs roughly $1 million annually.

“The EDRD (Expensive Drugs for Rare Diseases) expert committees have not revised their recommendation to discontinue coverage given that there is no clinical evidence it would provide further benefits for Charleigh,” said Osborne.

To the family, that means an appeal they made along with professionals in the Batten Disease community one week ago has fallen on deaf ears.

“I am just so sad that this is part of her story and it’s not fair,” said Fales.

The group advocating for Charleigh in Friday’s meeting brought forward the names of two professionals in the Batten Disease field who the group says were not consulted during Charleigh’s initial review.

“The ministry can confirm that the CDA (Canadian Drug Agency) reviewed and evaluated eight separate publications by those two experts,” said Osborne.

Andrew McFadyen is the executive director of the Isaac Foundation and was in the meeting on Friday.

“I know that the two international experts didn’t receive a phone call this week; they had been waiting to hear from the Ministry,” he said.

McFadyen says the published data that the CDA reviewed is outdated. He recommended during the meeting that the province should have spoken to those professionals to find out new, unpublished information on the benefits of Brineura. The province never acted on the group’s recommendations.

“The (EDRD) committee is in the extremely difficult position of making decisions like these regularly,” Osborne said, adding that it is important that everyone be treated fairly.

Charleigh is the only person with Batten disease in the province, and fewer than 20 people have it in Canada.

Osborne said there are about 650 other people in B.C. who receive drugs for rare diseases, “and the committee uses the same rigorous process” for all.

“This has been one of the most challenging issues that I have worked on since becoming health minister, and I take seriously my role to ensure that B.C. has drug review processes that are independent, evidence-based and treat people equally,” Osborne said.

B.C. is not the only jurisdiction grappling with the issue, she added, noting that the United Kingdom announced it would no longer provide coverage of Brineura for future Batten disease patients due to the limited evidence of its long-term effectiveness.

Since Osborne’s announcement Friday morning, a groundswell of support for Charleigh has emerged.

For the entire day, Local Pizza on Douglas Street in Victoria was donating half of its profits to Charleigh, a move that inspired some of the restaurant’s staff to donate their daily wages as well.

“As a community, this is something that we can do for her,” said Jaspreet Bhatia, owner of Local Pizza.

On Thursday, the Westshore Economic Development Committee announced it had also raised money for the 10-year-old girl.

“We raised just under $70,000,” said Ben Guldrandsen, Westshore Economical Development Committee director.

That money will be put toward privately purchasing two infusion treatments for Charleigh. Asked Friday whether the province would allow Charleigh’s medical team to administer the drug, Osborne said it would.

“They do have to ability and I understand that Island Health is in dialogue to enable this to happen if they decide that is what they decide to do,” she said.

That isn’t sitting well with Charleigh’s family.

“I think this was about money and they didn’t do the due diligence,” said Fales.

The family doesn’t know what is next for Charleigh, but Fales fears the worst.

“I don’t know how we move on from this,” she said.

With files from The Canadian Press