Sephience | The Moment Has Come for Quebecers Living With Phenylketonuria
Send your comments to INESSS before July 7, 2026
It’s not often that we’re asked directly for our take on a treatment that could change our daily lives. This time, we are.
INESSS is currently evaluating whether Sephience will be covered by the RAMQ. The Institute is inviting people living with phenylketonuria and their caregivers to submit comments as part of that evaluation.
Why does it matter? Because these comments become part of the file INESSS reviews. Our lived experience, the daily weight of the diet, what it would actually mean to finally have access to this treatment: that’s exactly the kind of information they’re looking for, and that no study can tell in our place. It guarantees nothing. But the more of us who speak up, the more our reality weighs in the balance.
How to take part?
The deadline is July 7, 2026.
Fill out the official form « Drug Evaluation - Questionnaire for Patients and Caregivers » (the patient questionnaire, downloadable through the link or button below).
Send it by email to plan.commentaires.inscription@inesss.qc.ca, or by mail to the following address:
Institut national d’excellence en santé et en services sociaux (INESSS)
Direction du médicament
2535, boulevard Laurier, 5e étage
Québec (Québec) G1V 4M3
You're the best placed to speak about your daily life and what phenylketonuria changes for you. That's exactly what INESSS wants to hear, in your own words. If it helps you think through the areas it touches (diet, social life, mental health, cognition), I've written about that. But the testimony that counts is yours, not mine.
We rarely get the chance to speak straight into the mic. Let’s take it. And share this with the people around you: every testimony counts.