The PBCers Organization, the PBC Foundation UK and other groups around the world are calling to change the name of the chronic autoimmune disease, from Primary Biliary Cirrhosis to Primary Biliary Cholangitis.
While cirrhosis is largely associated with alcoholism, PBC is not caused by alcohol or substance abuse. Yet, those affected by the disease deal with the stigma of cirrhosis- even by some medical professionals.
“When I was first diagnosed with PBC, I overheard two nurses commenting that I didn’t look like an alcoholic. That’s because I’m not,” said Linie Moore, Founder and President of the PBCers Organization. “It’s hard enough being diagnosed with an auto-immune disease but to also be accused of being an alcoholic is devastating.”
The international advocate-led effort has gained (or is gaining) support from EASL, AASLD, and APASL and the request to change “cirrhosis” to “cholangitis” has been submitted to World Health Organization IDC 11.
“There is a widespread misunderstanding about PBC and a need for greater awareness,” said John M. Vierling, MD, FACP, Baylor College of Medicine in Houston. “Since cirrhosis occurs only in the late stage of PBC, the name primary biliary cirrhosis is actually a misnomer for patients in the earlier stages of the illness.” He added, “A name change to primary biliary cholangitis would retain the abbreviation PBC and better serve patients and the medical community worldwide.”
Along with Vierling, other top liver specialists leading the charge on the name change include Robert Gish, MD; M. Eric Gershwin, MD, MACR, MACP; Keith Lindor, MD; Carlo Selmi, MD; and Christopher Bowlus, MD.