BC PharmaCare is inviting patient and caregiver input on Sephience (sepiapterin), a treatment for hyperphenylalaninemia (HPA), including PKU. This is an opportunity to help decision-makers understand what treatment access means in everyday life.
This is an online consultation, not an in-person event. You can complete the survey before the deadline, at a time that works for you.
Decisions about treatment access affect more than laboratory results. They can influence dietary management, daily routines, family life, independence and quality of life.
Whether your experience involves current treatment, challenges with existing options or hopes for future therapies, patient and caregiver perspectives can help inform the review process.
CanPKU+ has contributed patient and caregiver perspectives to the national drug review process. We thank everyone who shared their experiences and helped strengthen our advocacy for equitable treatment access.
Individual experiences help decision-makers understand the challenges of lifelong PKU management and the importance of treatment options that improve both health outcomes and everyday life.
