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Becoming Your Own Advocate This International PBC Day - MyPBC Coach

Becoming Your Own Advocate This International PBC Day

By: Lynn Gardiner Seim
Executive Vice President and Chief Operating Officer, American Liver Foundation

Picture your biggest advocate. Do you think of your family, your friends? Perhaps your healthcare team comes to mind. But there’s one critical player that brings this power team together … YOU! If you are living with a chronic liver disease like primary biliary cholangitis (PBC), you are your biggest advocate. One of the best ways to navigate your unique journey with PBC is to know your rights. It allows you to have an active role in planning your own care, ensuring you the care you deserve.

One of the best ways to navigate your unique journey with PBC is to know your rights.

This is why the American Liver Foundation (ALF), in collaboration with the PBCers Organization and other members of the PBC community, developed the PBC Patient’s Bill of Rights, a reminder of what people living with PBC are entitled to when it comes to managing liver disease. Released in early September in conjunction with International PBC Day on September 10, the Bill of Rights is meant to empower, educate and unite people living with PBC.

  • The manifesto comes at a much-needed time. Stigma around liver conditions remains pervasive.
  • We’ve found that it’s not uncommon for people living with PBC to feel isolated as a result. What’s more, there’s limited access to available peer-to-peer support systems and educational resources.
  • Knowing your rights is a great first step that can be used from the point of diagnosis forward as a set of guiding standards. Once you are informed, you can proactively talk to your healthcare team to ensure your needs are met.

With International PBC Day having just occurred, there’s no better time to take a stand. That said, let’s keep the momentum going – ALF encourages people living with PBC to be their own advocate 365 days a year! We’ve found that once people are armed with information, they are empowered to be their own biggest advocate and seek out other impassioned patients who are not afraid to use their voice to advocate for the community at large.

Familiarize yourself with the PBC Patient’s Bill of Rights below to take a larger role in managing PBC. Then take the MyPBC Coach quiz and download your personalized discussion guide to be better prepared for your next visit with your healthcare team.

Lynn Gardiner Seim, MSN, RN, leads the ALF’s national education, advocacy, support services, research, communications and development initiatives, supporting the operations of 16 divisions nationwide.

This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. All decisions regarding your treatment should be made by your healthcare professionals.