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2w ago

B.C. Restores Brineura Coverage for Charleigh Pollock Following Expert Appeal

Sixteen Batten disease experts wrote that the province’s motor-language scoring was never intended to justify stopping Brineura infusions.

Charleigh is one of the happiest child you will ever meet, her mom told Global News.
10-year-old Charleigh Pollock.
Langford's Jori Fales with daughter Charleigh Pollock, 10.
B.C.’s health minister said in a statement that drug funding for a girl with a rare disease will be restored.

Overview

  • Health Minister Josie Osborne reinstated Charleigh Pollock’s coverage indefinitely and issued an apology to the family for the funding withdrawal.
  • The U.S. Batten Disease Clinical Centers of Excellence and Clinical Research Consortium specialists contested the expert panel’s use of speech and motor scores to determine treatment discontinuation.
  • After public funding ended on June 19, community donations enabled Charleigh, the only child in B.C. with CLN2 Batten disease, to resume her biweekly Brineura infusions.
  • An advisory panel upheld the motor-language cutoff on July 11 before the expert letter prompted a government review later that week.
  • The reversal has led to resignations on the Expensive Drugs for Rare Diseases advisory committee and intensified calls to overhaul rare-disease drug eligibility guidelines.