Conservative MLA Brennan Day Calls for Immediate Action After Leaked 2021 Rare Disease Drug Report

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 engagement strategy to explain decisions and build public trust

“None of this is new,” Day said. “It was known four years ago. It was reinforced in Charleigh’s case. Yet families are still paying the price for a system that delays action.”

Day is calling on the Ministry of Health to take immediate steps:

1. Release the full 2021 EDRD review with a clear status update on what has and hasn’t been implemented.

2. Set a public timeline for fully implementing the outstanding recommendations, prioritizing oversight, transparency, and patient engagement.

3. Ensure families are included in conversations and decisions that directly impact access to life-saving treatments.

“The suffering Charleigh and her family endured was predictable, known, and entirely avoidable,” said Day. 

“The report doesn’t reveal new problems—it confirms what we’ve been saying for months. Families should never have to fight for treatment because the system fails to act on the guidance it already has. Let’s make this about sense, not just dollars.”

Day is also urging healthcare professionals—whether doctors, nurses, administrators, or other staff—who have knowledge of critical reports, audits, or reviews, either at the local or provincial level, that have been commissioned but left unacted upon, to come forward. “If these reports exist and are being ignored, patients and families are paying the price,” Day said. 

“We need to bring these documents into the light, ensure accountability, and turn recommendations into real action. The public has a right to know what has been studied, what has been advised, and why decisions that could save lives are not being implemented.”