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A Brighter Future in Primary Biliary Cholangitis (PBC) Patient Care

Released: September 05, 2025

Maria G. Morais
Maria G. Morais, RN
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Key Takeaways
  • Newly approved therapies are shifting PBC management beyond slowing disease progression only to also addressing the burden of symptoms.
  • Empowering patient voices and incorporating patient-reported outcomes into clinical research is essential. 

As a person with primary biliary cholangitis (PBC), registered nurse, and passionate advocate, my journey has been shaped by a delayed diagnosis and limited treatment options, ultimately leading to a liver transplant. This life-altering experience might have taken a different path had more effective therapies to better manage this rare autoimmune liver disease been available earlier. Today, my lived experience drives my commitment to raising awareness, improving care, and advocating for timely diagnosis and better treatment options for those affected by PBC. 

Here’s what the advances in therapies mean to me—and to many of your patients.

Hope
For years, treatment options were limited to ursodeoxycholic acid (UDCA) and obeticholic acid. Although these therapies helped slow disease progression for some patients, others continued to struggle with debilitating symptoms like fatigue and pruritus—symptoms that can severely impact quality of life and contribute to emotional challenges and uncertainty about the future. Fortunately, recent advancements in research are bringing renewed hope to the PBC community. New therapies are emerging that not only target disease progression but also address the symptomatic burden, offering more personalized, effective care, and most important, hope.

These innovations have granted patients with PBC greater opportunities to manage their disease. Research, patient involvement, and progress in clinical practice are reshaping the future of care, leading to better health outcomes, improved symptom management, and enhanced quality of life.

The PBC community is especially hopeful about the recent approval of additional second-line therapies, such as elafibranor and seladelpar, as well as other therapies in clinical trials or pending approvals. For the many patients who do not respond to UDCA, these new options represent a critical step forward. Ultimately, it’s not just about slowing disease progression, it’s also about reducing symptom severity and empowering patients to plan for their future with greater confidence. 

As a nurse and advocate, I recognize how access to more treatment options can be transformative for patient well-being and health outcomes. Having more options available enables patients to take an active role in their care, engage meaningfully with their healthcare teams, and feel a renewed sense of control over their disease. Of most importance, it brings hope to the horizon where people living with PBC can envision a healthier, more productive life while being on effective treatments that can slow down disease progression significantly.

Patient Voices and Patient-Reported Outcomes
Across the PBC community, these advancements are already making a difference where new therapies are accessible. Improved diagnostic tools and increased healthcare professional awareness are leading to earlier diagnoses, changing the trajectory of the disease. Preventing liver cirrhosis and slowing progression are key to helping patients live well and live long.

Yet, despite this progress, many patients still face barriers to treatment such as delayed diagnoses, limited access to specialists, and disparities in treatment coverage. These gaps are where advocacy must continue. Patient voices must continue to shape healthcare decisions for treatment, and access to care must be equitable.

It is also essential that patient-reported outcomes be prioritized in research and treatment development. Listening to lived experiences and patient stories of symptom burden and impacts on quality of life must be central to disease management. This shift ensures therapies are designed holistically with real people in mind, not just data from lab results.

PBC remains a complex disease, but the future is brighter. With new treatment advancements, increased disease awareness and a growing commitment to patient-centered care, there is real hope on the horizon for the PBC patient community!

Your Thoughts
How do you prioritize symptom burden in PBC care? What do you think is the most impactful recent advancement in PBC treatment? Leave a comment to join the discussion! To learn more, sign up for our upcoming webinar, Keeping Up with New Developments in PBC.

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