Advocacy in Action | British Columbia

BC Families: Share Your Voice on Sephience

BC PharmaCare is seeking patient and caregiver perspectives on Sephience (sepiapterin), a treatment for hyperphenylalaninemia (HPA), including phenylketonuria (PKU).

Why Your Experience Matters

For individuals and families living with PKU, treatment is about much more than managing phenylalanine levels.

Daily dietary management, treatment routines, access to appropriate medical foods, emotional well-being and the demands of lifelong care can all affect quality of life.

When governments consider whether to publicly fund a treatment, hearing directly from the people who may be affected helps provide important context beyond clinical trial results.

Your perspective can help decision-makers understand the practical realities of PKU management, including challenges with current treatments and what meaningful improvements might look like for patients and families.

What Is BC PharmaCare's Your Voice Program?

BC PharmaCare's Your Voice program provides opportunities for patients, caregivers and patient organizations to share information relevant to provincial drug reviews.

These perspectives can help inform decisions about whether medications should be covered through BC PharmaCare.

Who Should Consider Participating?

We encourage eligible individuals and caregivers with experience managing HPA or PKU to review the consultation and consider sharing their perspectives.

You do not need to have experience taking Sephience to have valuable insights. Your experiences with existing treatment options and everyday management may also be relevant.

CanPKU+ and Treatment Access Advocacy

CanPKU+ advocates for equitable access to appropriate treatments and care for people living with PKU and allied inherited metabolic disorders across Canada.

Our advocacy recognizes that lifelong conditions require lifelong care, that treatment burden extends beyond medical outcomes, and that innovation should lead to meaningful improvements in everyday life.

CanPKU+ has also contributed organizational patient input to the Sephience review process. We thank the individuals and families who have shared their experiences to support this important work.

Participation in the BC PharmaCare consultation is voluntary. Individuals should share their own experiences and perspectives. Information is provided for educational and advocacy purposes.