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11 JUNE 2018

ALF Hosts Living Successfully with Primary Biliary Cholangitis Collaborative

June 8, 2018

Prior to the release of Ursodial 25 years ago, living successfully with what was then called primary biliary cirrhosis (PBC) – now called primary biliary cholangitis (PBC) meant–starkly–surviving for a few years while gaining some relief for the symptoms of the disease.  Today, thanks to multiple medication options and a growing PBC community, patients with primary biliary cholangitis (PBC) are able to envision a longer and better-quality life with the disease.

On May 1st, the American Liver Foundation hosted a second PBC Collaborative that brought together patients and health care professionals as well as patient advocacy groups, medical thought-leaders, and health educators for a robust conversation surrounding the different but equally valid ways that physicians and people living with PBC define “living successfully.”

The day’s purpose was to explore the ways that patients can strike a healthy balance between managing their disease and living life to the fullest.  We examined how successful monitoring and management of PBC looks from a clinical perspective as the disease progresses over time as well as ways patients and providers can work together to address the day-to-day impact of PBC symptoms on family and career responsibilities.  Participants were pleased with their progress toward this immediate goal.  “It’s a truly inspiring experience to sit round the table with such amazing hearts and minds.  We have the right people to address these vital issues and to harness our potential,” said Robert Mitchell-Thain, who heads education and development  at the PBC Foundation based in Edinburgh, Scotland.

Moving forward, the group is working to turn the discussion into identifying specific guiding principles for living successfully, and numerous potential programmatic outputs that the various stakeholders will be looking to implement.  Carol Roberts, PBC patient and Executive Committee Member of the PBCers Organization noted, “It was nice to  have interaction between physicians, patients and pharma and to gain valuable perspective from each other. [I am] Looking forward to the report compiling our thoughts and how we can turn our discussion into actions and eventually share our outcomes with others.”

Tom Nealon
President & CEO
American Liver Foundation

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