Let’s be clear: I am not a medical expert, nor have I claimed to be. That’s exactly why I’ve been careful and deliberate in consulting those who are.
A commentary by the Conservative MLA for Courtenay-Comox, his party’s critic for rural and seniors health.
The July 3 editorial, “Two tragedies in Charleigh’s terminal illness,” accuses politicians — myself among them — of offering “false hope” to the Pollock family.
It implies that elected officials have no role advocating for families in crisis if medical experts have spoken. I reject that notion outright.
Let’s be clear: I am not a medical expert — nor have I claimed to be. That’s exactly why I’ve been careful and deliberate in consulting those who are.
I’ve spoken directly with Charleigh’s treating physicians, Batten disease specialists and global advocacy leaders like Ineka Whiteman from the Batten Disease Support and Research Association.
You know who wasn’t consulted? Them.
Whiteman has gone on record confirming that neither she nor her colleagues at BDSRA — leading voices in Batten research — were consulted by the B.C. Expensive Drugs for Rare Diseases (EDRD) advisory panel.
This is a disease so rare, you would think a responsible health-care system would engage with the experts wherever they may be. Not one of Charleigh’s treating doctors in B.C. was meaningfully included in the final decision. That’s not evidence-based medicine; that’s bureaucracy behind a locked door.
TheTimes Colonistsays $5 million has already been spent on Charleigh’s care, as though we should draw a line in the sand based on dollar signs.
But this was never about money. This was about process. It was about families not being heard.
And it was about one girl — alive today — whose team of specialists believe she is still benefiting from the only Health Canada–approved treatment for her disease: Brineura.
Let me ask: If this were your child, and the government ended treatment without consulting your care team, without seeing your daughter, and without a second opinion from international experts — would you simply accept that as “science-based” governance? Or would you fight for her?
I was asked by Charleigh’s family — personally — to help tell their story. And I’ve done exactly that.
I’ve tabled questions in the legislature. I’ve written to the minister of health. And I’ve ensured that this heartbreaking case doesn’t get quietly buried behind talking points and procedural silence.
The editorial suggests that by stepping in, I am somehow undermining the medical system. Quite the opposite — I’m defending it.
I’m defending the right of patients and families to be part of the conversation. I’m defending the need for transparent decisions based on real consultation with front-line experts.
I’m defending the very idea that elected officials are here to serve the public — even in the most difficult cases.
Charleigh Pollock is a real child. She is loved.
She just turned 10 years old. She has a team of specialists who have seen her respond to Brineura.
Since starting Brineura, she has gone from 100 seizures a day to zero.
To imply that fighting for her dignity, her care, and her family’s voice is political opportunism is deeply offensive — to me, and to them.
What’s tragic here isn’t that I spoke up.
What’s tragic is that I had to.
And will continue to.