MLA Brennan Day is demanding urgent action from the Ministry of Health following the leak of a 2021 review of the Expensive Drugs for Rare Diseases (EDRD) Board, a report that highlights longstanding failures in the provincial system for funding and delivering rare disease treatments. “The leak of this four-year-old review is frustrating—but it confirms exactly what we’ve been saying since February,” said Day. “Families like Charleigh Pollock’s were left in the dark, forced to fight for life-changing treatments while bureaucrats sat on recommendations that could have prevented this. Transparency is not a website. It’s real oversight, real engagement, and a system that works for patients—not just for the bureaucracy.” The 2021 report called for: Oversight of the advisory committee and the EDRD system Evidence standards and effectiveness thresholds for high-cost rare disease drugs Inclusion of rare-disease patients in pharmacare coverage A 36-point communication and public en...
A discussion on political, economic and social issues in British Columbia, and Canada