RAVICTI Discontinuation in Canada
What Families Living with UCDs Need to Know
CanPKU+ is working with healthcare professionals, industry representatives and other stakeholders to help protect continuity of treatment for Canadians living with urea cycle disorders.
At a Glance
The planned discontinuation of RAVICTI (glycerol phenylbutyrate) has raised concerns about future treatment access for Canadians living with urea cycle disorders (UCDs). CanPKU+ is actively engaging with multiple stakeholders to explore options and help minimize the potential for interruptions in treatment.
While alternative medications exist, treatment decisions must be individualized. Questions remain about future supply and access in Canada.
Understanding the RAVICTI Discontinuation
RAVICTI is a prescription medication used in the long-term management of certain urea cycle disorders. It helps the body eliminate excess nitrogen, reducing the risk of harmful ammonia accumulation.
Amgen has announced plans to discontinue RAVICTI in North America. CanPKU+ is continuing to seek clarification regarding the Canadian supply timeline and the implications for patients currently receiving treatment.
For individuals and families managing UCDs, maintaining consistent access to prescribed treatment is essential.
Are Other Medications Available?
Other nitrogen-scavenging medications used in the management of UCDs include PHEBURANE (sodium phenylbutyrate), a medication associated with Medunik.
Like RAVICTI, PHEBURANE helps the body eliminate excess nitrogen. However, the medications have different formulations and administration requirements.
PHEBURANE is not a direct, automatic replacement for RAVICTI.
For some individuals, an alternative treatment may be appropriate. For others, differences in medication tolerance, administration, sodium content or metabolic management may present additional challenges.
Any treatment changes must be carefully evaluated and supervised by the individual's metabolic healthcare team.
What Is CanPKU+ Doing?
CanPKU+ recognizes the concern this announcement may create for individuals and families who rely on RAVICTI.
We are actively working with multiple stakeholders to explore potential solutions and help reduce the risk of treatment interruptions in Canada.
Our ongoing efforts focus on:
- Supporting continued access to appropriate treatments for Canadians living with UCDs.
- Engaging healthcare professionals, industry representatives and other stakeholders to better understand available options.
- Encouraging timely planning and communication to help prevent avoidable disruptions in patient care.
- Advocating for treatment decisions that recognize the individual needs of patients and families.
While these efforts are ongoing, no particular solution or supply arrangement should be considered confirmed until it has been formally established.
Our priority remains ensuring that the needs and experiences of Canadians living with UCDs are part of the conversation.
What Should Patients and Families Do?
If you or someone in your family currently takes RAVICTI, we encourage you to speak with your metabolic healthcare team about the discontinuation and what it may mean for your treatment plan.
Your healthcare team is best positioned to review your individual circumstances, discuss potential alternatives if needed, and help plan for continued care.
Do not stop or change prescribed medication without guidance from your treating healthcare professional.
If you are experiencing difficulty obtaining medication or are concerned about an immediate interruption in supply, contact your metabolic clinic or prescribing team promptly.
We Will Continue to Share Updates
CanPKU+ remains committed to supporting the Canadian UCD community through this transition.
Treatment access is about more than the availability of a medication. It is about maintaining stability, confidence and quality of life for individuals and families managing complex metabolic conditions.
As reliable information becomes available, we will continue to share relevant updates with our community.
CanPKU+ is working to ensure that Canadian patients and families remain informed, represented and supported.
Questions or concerns about treatment access? Contact info@canpku.org .
