After a long and distressing journey, full of ups and downs, the BC government has decided to restore funding for a 10-year-old girl from Langford’s Batten disease treatments.
Charleigh Pollock has been battling Batten disease (CLN2) since she was born.
Batten disease is an extremely rare condition and young Charleigh is the only child in all of BC who has this diagnosis.
Initially, the BC government cut off her funding for cerliponase alfa (Brineura), a drug that can help to extend Charleigh’s life.
Typically, with the help of Brineura, children who have been diagnosed with Batten disease can live into their early adolescence.
Brineura treatments are costly, which led Charleigh’s family to launch a GoFundMe in order to be able to continue her treatments without taking on the full burden of the drug’s cost themselves.
However, the Ministry of Health has now reversed their decision to cut Charleigh’s funding for treatments.
“It has become clear there is significant debate among experts about the criteria used in Canada to guide the use and funding of Brineura,” said Josie Osborne, Minister of Health.
“These are complex decisions that must be made by health professionals based on evidence and clinical expertise—but children like Charleigh should not be caught in the middle of such disagreements between experts and clinicians.”
Osborne says that she continues to believe that these decisions must be grounded in the best available evidence, but in this circumstance, experts’ disagreements have muddled the Ministry of Health’s decision.
Earlier this year, the Canada’s Drug Agency completed a review for criteria regarding the discontinuation of Brineura treatments.
Since then, Osborne says she has received letters from clinicians and researchers with a range of perspectives.
“A letter I received yesterday—signed by over 10 leading international Batten disease experts—reinforces that there is ongoing, unresolved disagreement within the medical community about Brineura,” said Osborne.
“Charleigh’s family should not have to be caught in the middle of debate among experts. That’s why, last night I phoned Charleigh’s family to notify them that the Province will continue publicly funding Brineura for Charleigh, and that this coverage will remain in place until the family and the treating physician decide otherwise.”
She added that she wants to offer a sincere apology to Charleigh’s family for everything they have endured over the past few months.
“This nightmare is over,” wrote Jori Fales, Charleigh’s mother, in a Facebook post after receiving Osborne’s call.
“I just spoke to Minister Josie Osborne, Charleigh’s government funding for Brineura treatments has been restored. She will receive infusions for as long as she needs them!”
Fales added that she is beyond grateful to everyone who has supported her throughout this and moved mountains for her precious girl.
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