Over the course of 2015 there was extensive discussion about whether the name of PBC should be changed from Primary Biliary Cirrhosis to Primary Biliary Cholangitis. The majority of PBC patients do not have cirrhosis and the new name will remove the perceived but inaccurate association with alcohol.
The change has been championed by patient groups internationally, led by the PBC Foundation who are partners in UK-PBC. It has also now been supported by the liver professional societies internationally (EASL, AASLD and APASL).
UK-PBC fully supports the name change and will adopt the term Primary Biliary Cholangitis.
However, it is important that the new name does not create confusion. Awareness of the disease and its importance is critical if we are to deliver effective health care. It will be a long time before the new name is in widespread use clinically and we therefore suggest that in the interim we use the name Primary Biliary Cholangitis (formerly Cirrhosis).