Re: Leaked 2021 EDRD Board Review – Time for Action
Dear Minister Osborne,
The recent leak of the 2021 review of the Expensive Drugs for Rare Diseases (EDRD) Board is both frustrating and unsurprising. This report, completed four years ago, reinforces exactly what I, and many others, have been saying since February about the Ministry’s handling of rare disease treatments, including the ordeal faced by Charleigh Pollock and her family.
In February, I, and others, raised serious concerns about how the system was failing families, leaving them in the dark, with decisions made behind closed doors, and with lives hanging in the balance. The 2021 report confirms those concerns: it called for stronger transparency, better communication, and clear oversight Yet, according to Postmedia, very little of this has been acted on. A website and an appeals process are steps: but they are not enough. Transparency is not a website. Transparency is real engagement, real oversight, and a system that works for patients, not just bureaucracy.
My position on the failed bureaucratic process that has led us to this point has not changed. I am, however, encouraged that your government has now publicly acknowledged the challenges. What is deeply concerning is that, during this period, your Ministry was in possession of a report that directly contradicted your public statements, and it was effectively buried. British Columbians are right to ask how many other reports have been commissioned, received, and ignored; reports that outline clear, actionable steps to improve healthcare delivery in a fair, transparent, and evidence-based way. This leaked review only reinforces what the public has been saying: this government lacks transparency and consistently fails to act proactively, instead allowing preventable missteps to unfold at the expense of patients and families.
The suffering that you put Charleigh and her family through due to bureaucratic inertia was predictable, known, and avoidable.The review made concrete recommendations:
- 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 phannacare coverage
- A 36-point communication and public engagement strategy to explain decisions and build trust
None of this is new. It was known four years ago, it was reinforced in Charleigh’s case, and yet families are still paying the price for a system that delays action.I am asking the Ministry to take immediate steps:
- Release the full 2021 EDRD review and a clear status update on what has and hasn’t been implemented.
- Set a public timeline for fully implementing the outstanding recommendations, prioritizing oversight, transparency, and patient engagement.
- Make sure families are consulted and included on the conversations and decisions that directly impact access to life-changing treatments.
The report doesn’t reveal new problems, it confirms what we’ve been saying for months. Families like Charleigh’s should never have to fight for their child’s treatment because the system fails to act on recommendations it already had. You’ve maintained that this process is not about the dollars.Let’s make it about sense. I look forward to your response outlining concrete steps to making that 4-year-old report a reality.
Sincerely,
Brennan Day
MLA, Courtenay-Comox Opposition Critic for Rural and Seniors Health