A nine-year-old Langford girl received her last publicly funded infusion of an expensive drug for a rare fatal disease on Thursday, a day after the Health Ministry .
Charleigh Pollock has a neurodegenerative condition known as Batten disease, and for six years received bi-weekly infusions of the drug Brineura, which costs about $1 million a year and is intended to slow decline from the terminal disease.
Mother Jori Fales, standing outside Victoria General Hospital where Charleigh was receiving her final dose, said her daughter turns age 10 in two weeks, “and I know in my soul she will not see her 11th birthday” due to the decision.
“There’s a lot of tears this morning, but you know who’s smiling? Charleigh, she’s smiling,” said Fales, adding her daughter squealed with happiness all the way into the hospital.
In 14 days, the drug will have left Charleigh’s system and the child’s condition will start to rapidly decline, Fales said through tears. She said the last few months have been a roller coaster between heartache and anger. “There’s no way of really preparing to lose the medication that’s keeping your daughter’s quality of life going,” said Fales, who argues the decision to end the drug coverage should have been made by a member of the girl’s medical care team, her family and Charleigh.
“We wholeheartedly did not think that this was going to be the outcome after the last five months.”
Charleigh, who attends Happy Valley Elementary school, can’t walk but can say a few words and is full of joy every day, Fales said of her only child.
Health Minister Josie Osborne said Wednesday that Canada’s Drug Agency has completed its review and there is no new evidence to change its decision to discontinue coverage of the drug, given the advanced stage of Charleigh’s condition.
“Charleigh has met the discontinuation criteria,” said Osborne, noting how difficult the decision has been.
Osborne, who ordered an urgent review of the case after the family received news in January that coverage was being discontinued, said the decision is now final and was not based on the drug’s cost.
Coverage decisions under 小蓝视频’s Expensive Drugs for Rare Disease program, established in 2007, are based on the advice of a committee of independent experts using clinical criteria established by Canada’s Drug Agency. The province, which covers about 30 drugs under the program, said it has never provided ongoing coverage against the committee’s recommendations.
Fales said it makes her “blood boil” to hear the minister talk about Charleigh’s advanced decline given that she has never met the girl. “Charleigh is not in advanced progression of her disease — that is simply not true.”
She said if anyone had visited Charleigh they would see that, in the family’s opinion, she’s thriving. She said her daughter’s physician and care team have recommended that the province allow Charleigh to continue receiving the drug. In the weeks to come, the family will be looking into next steps, including hospice care, Fales said.
Charleigh is the only child in 小蓝视频 and one of fewer than 20 in Canada with Batten disease, which began to affect her at the age of three, when she suffered seizures and began to lose her ability to walk and talk.
Brineura is the only drug approved to treat the form of the disease that Charleigh has, known as ceroid lipofuscinosis type 2 (CLN2).
Funds have poured into an online fundraising page to help the family, but Fales said she thinks continuing to access the drug privately is more complicated than just paying for it, and she’s not sure it’s possible.
Fales said the priority now is to make every day count with Charleigh. “We love Charleigh so much, and she didn’t deserve this disease,” she said. “She didn’t deserve this outcome.”
