Overview

• On July 11, the EDRD review panel upheld its June decision to discontinue Charleigh Pollock’s Brineura funding after reassessing all submitted evidence.
• Health Minister Josie Osborne affirmed that the province’s clinical eligibility thresholds remain unchanged and that cost was not a factor in the review.
• On July 4, Charleigh’s mother and three Batten disease experts presented additional research to Osborne, but the panel confirmed it had already considered those submissions.
• United Kingdom health authorities announced they will cease future Brineura coverage for Batten disease patients citing limited long-term effectiveness data.
• Brineura’s roughly $800,000 to $1 million annual price tag and strict, standardized review standards underscore broader challenges in rare-disease drug funding policy.