B.C. Health Ministry restores drug funding for girl with rare disease

The mother of a nine-year-old Vancouver Island girl who has an extremely rare neurodegenerative disease says she’s grateful her daughter will get her medication back.The British Columbia government has restored funding for Charleigh Pollock for the drug Brineura, which costs about $1 million a year. Health Minister Josie Osborne said on Thursday she believes health professionals should make decisions about care, and a letter she received from Batten disease experts in the United States detailed a “significant disagreement” over the drug. Charleigh’s mother Jori Fales posted a video on social media, saying she was “overwhelmed” by the decision from the province.“I spoke to Charleigh’s family earlier this evening. 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,” Osborne said in a statement. The minister said the Vancouver Island girl and her family should not suffer because of the disagreement over the drug.The government had cut off the funding last month, saying an expert committee determined that the drug was no longer helping to slow the progress of the girl’s disease.It reinforced its decision last Friday, when Osborne said another review by an expert committee showed that the drug was no longer helping. Osborne said the decision wasn’t about the cost of the drug. At the time, Fales posted a video on social media sobbing, saying she was “disgusted” and “heartbroken” by the decision. Premier David Eby said earlier Thursday that it was difficult to see the suffering and anxiety of the girl’s family. Eby said the letter from medical experts in the United States who treat children with this disease raised serious concerns about the Health Canada criteria applied in the province. “That disagreement is certainly causing a lot of concern,” he said, noting that the health minister had planned to take it to the same committee that made the original decision. Pollock is the only person in B.C. to have the disease and one of about 20 in Canada.

B.C. Health Ministry restores drug funding for girl with rare disease

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