B.C. restores funding for Charleigh Pollock’s rare disease treatment after damning letter from experts

After a long, hard-fought battle by her family, the province has re-instated coverage for an expensive drug for a girl on Vancouver Island.

Update, July 17, 6:45 p.m.: B.C. Health Minister Josie Osborne confirmed in a statement Thursday evening that the province will be renewing coverage of the medication Charleigh Pollock has been receiving to treat her Batten disease.

“I spoke to Charleigh’s family earlier this evening,” the minister’s statement reads. “I confirmed to them that I have reinstated Charleigh’s Brineura coverage and that coverage will be available to them for as long as the treating physician and the family deem it appropriate.”

The province had previously declined to extend coverage for the girl, citing recommendations from its expensive drugs for rare diseases committees.

Earlier in the day Thursday, however, Premier David Eby had hinted that the province was reconsidering its stance after receiving a letter from more than a dozen Batten disease experts from around the world.

“I continue to strongly believe that decisions about care should be made by health experts to ensure they are based on the best available evidence,” Osborne said in her statement.

“The letter I received today from Batten disease experts confirms there is significant disagreement between health experts on Brineura, and it is not acceptable that Charleigh and her family suffer as a result of that disagreement about the use of Brineura for Batten Disease.”

The original story follows.

There is a glimmer of hope for the family of Charleigh Pollock, the 10-year-old whose expensive treatments for a rare genetic condition were defunded by the B.C. government.

Premier David Eby has hinted the province could backpedal its decision to stop funding Brineura infusions for Charleigh’s Batten disease after receiving a damning letter from leading international experts on the condition.

For Charleigh’s mother, Thursday was a good day.

“Today is the first day that I feel like I can breath since Charleigh lost her funding,” said Jori Fales.

Also on Thursday, at Victoria General Hospital, Charleigh received her first crowd-funded infusion of Brineura since her government-funded treatments ended.

“Knowing that the vital medication is dripping into her brain right now, it’s the best feeling,” said Fales. “At the hospital there were cheers when we came in and everyone was so happy to see us.”

The province has been under intense criticism for months over its decision. Pressure is only expected to increase after the letter was sent to Eby and Health Minister Josie Osborne, signed by more than a dozen Batten disease experts from around the world condemning the decision.

Andrew McFadyen is the founder and executive director of the Isaac Foundation, a Canada-based charity dedicated to funding research for rare diseases and supporting affected families. The charity was named after his son, who also suffers from a rare disease. McFadyen’s name was on that letter.

“I think we all have a fiduciary responsibility to call out when decisions are being made based on outdated science, based on science that we know isn’t appropriate,” said McFadyen.

Information contained in the letter isn’t new to the province, McFadyen said, and was already presented to Osborne two weeks ago during a meeting in her office.

“What is new is that we’ve all put our collective names behind this and we need to make sure that we are following the appropriate evidence here,” said McFadyen.

Eby responded to the letter during a news conference Thursday, calling it “significant.”

“I take it seriously and I know the minister does as well,” he said. “The minister is taking this to the committee and she will have more to say on this tomorrow.”

Fales said what her family has been put through over the past six months has been any parent’s worst nightmare, but she’s holding out hope that the province will overturn its decision to defund Charleigh’s treatments.

“I’m holding on to hope that we wake-up tomorrow with the best news ever,” said Fales.

The community has raised enough money for two more Brineura infusions. Unless more money is raised through a GoFundMe, Charleigh will once again have to go without.