British ColumbiaBritish Columbia’s minister of health says the province has reinstated coverage for an expensive drug used by a Vancouver Island girl with a rare and terminal genetic condition. Charleigh Pollock has CLN2 and relies on the drug Brineura to slow the progression of her diseaseB.C.’s health minister said in a statement that drug funding for a girl with a rare disease will be restored. (Submitted by Jori Fales to CHEK News)Jori Fales is breathing a sigh of relief this week after learning the province will once again provide coverage for an expensive drug her 10-year-old daughter requires to treat her rare and terminal genetic condition. “This has been a very long fight for our family,” Fales said.”Of course, we wish it never would have happened, but very grateful with the outcome.” On Thursday, British Columbia’s minister of health said Charleigh Pollock will once again receive coverage for Brineura. The drug treats neuronal ceroid lipofuscinosis Type 2, also known as CLN2 or Batten disease, which results in multiple seizures every day — eventually causing brain damage. Pollock, who lives on Vancouver Island, is one of 13 children in Canada and the only person in B.C. with the disease. Her name became known in 2019 when the province announced it would be covering the cost of the medication, which is given through an infusion of fluid to the brain to slow the progression of CLN2.Funding for the drug was approved when Pollock was three years old. Fales said before Brineura, Pollock had more than 100 seizures each day.”She was in pain and she was suffering and we were very grateful that British Columbia brought Brineura in,” Fales said. Osborne said last month the girl’s condition had reached the point where it met criteria to discontinue using the $1-million-per-year medication.Pollock’s family appealed that decision, and several experts and physicians had argued that Brineura was improving the young girl’s quality of life.But the health minister, quoting the findings of a medical review committee, said once a patient’s motor and language functions have declined to a certain point, Brineura no longer slows the progression of CLN2.Osborne announced last week there would be no change to the committee’s decision that the drug is no longer working, adding that she knew the outcome of the review process was not what the girl’s family wanted. But Osborne said Thursday that Pollock’s coverage has been reinstated and will be available to the girl “for as long as the treating physician and the family deem it appropriate.” “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 a 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.”LISTEN | Experts wrote letter opposing defunding decision: On The CoastExperts and advocates write joint letter opposing decision made by B.C. Ministry of HealthResearchers and advocates wrote a letter to B.C.’s Minister of Health, Josie Osborne, strongly opposing their decision to discontinue funding from Charleigh Pollock, and call for a review of the current discontinuation criteria. We hear from the president of the Batten Disease Support, Research and Advocacy Canada (BDSRA), Lori BrownSpeaking on CBC’s On The Coast Thursday afternoon, Premier David Eby said he was amazed by the outpouring of support for Pollock and her family. He reiterated that the initial decision to discontinue coverage of Brineura was not made by the health minister. “Health decisions should not be made by politicians. They should be made by, when necessary, experts in the area, and otherwise by the treating physician,” Eby said.CBC News learned Friday that four members of B.C.’s expensive drugs for rare diseases committee have resigned in the wake of this issue.The Ministry of Health confirmed the resignations in a brief statement Friday. It said there are approximately 50 members on the committee, which includes subcommittees.Fales said she hopes this doesn’t happen to any other families, should this situation arise in the future. “I think the ball was dropped quite a few times,” she said.Now, she plans to focus all her attention on her daughter. “I just love that little human more than anybody in the whole world, and I am very grateful she will be with us much longer now.”ABOUT THE AUTHORJon Azpiri is a reporter and copy editor based in Vancouver, B.C. Email him with story tips at jon.azpiri@cbc.ca.Follow Jon Azpiri on TwitterWith files from Liam Britten, Chad Pawson and The Canadian Press
Mother of girl with rare condition ‘very grateful’ after B.C. reinstates coverage of $1M drug
