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B.C. girl’s mother ‘disgusted’ as minister says rare-disease funds are denied

LANGFORD, BRITISH COLUMBIA, CANADA, JUL 11 – Health Minister Josie Osborne upheld the expert committee’s decision that Brineura no longer slows Batten disease progression despite new evidence from the family, officials said.

  • On July 11, 2025, B.C.’s Ministry of Health confirmed it will not restore drug coverage for 10-year-old Charleigh Pollock, who has Batten disease and lives on Vancouver Island.
  • This decision follows expert committee recommendations based on lack of clinical evidence that Brineura, an expensive drug costing about $1 million annually, continues to slow Charleigh's disease progression.
  • Health Minister Josie Osborne met last week with Charleigh’s family and Batten disease advocates, acknowledging the outcome was not what the family wanted while emphasizing independent, evidence-based drug review processes.
  • Charleigh’s mother, Jori Fales, and advocate Lori Brown disputed the government’s claims, stating the decision relied on outdated data that ignored new research from Biomarin and two disease experts.
  • With provincial funding cut, Charleigh’s family and supporters plan to fundraise to maintain treatment amid broader challenges in rare disease drug access and policy in British Columbia.
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Winnipeg SunWinnipeg Sun
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B.C. girl's mother 'disgusted' as minister says rare-disease funds are denied

By Brieanna Charlebois

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Charleigh Pollock's mother 'disgusted' as minister says rare-disease funds are denied

The mother of a nine-year-old British Columbia girl with a rare and deadly disease says she's "disgusted" with the decision not to renew coverage for medication that costs about $1 million a year.

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The Hamilton Spectator broke the news in Hamilton, Canada on Friday, July 11, 2025.
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