Today is a truly monumental day for PBC patients around the world. PBC now (finally) has the last step in our name change from Primary Biliary Cirrhosis to Primary Biliary Cholangitis in the book, literally. The ICD-11 codes were just released and we have our new code for Primary Biliary Cholangitis, DB96.1.
Thanks to all of the doctors, medical organizations, and patient groups that pushed this to happen! This is an incredible achievement for patients. We are no longer stigmatized with a disease name that includes the word cirrhosis. While some of us with PBC have cirrhosis, it’s not applicable to most PBC patients.
For those who are not familiar with the ICD Code system, this is the International Classification of Diseases published by the World Health Organization. While it takes years to make revisions to the ICD Codes and years to fully implement them in the US and elsewhere, it is the standard insurance companies use to classify billings. This new ICD-11 should be approved in May of 2019 by WHO and then adopted by everyone as they update systems.
As part of this effort, I am proud to have been able to help bring the patient voice on this name change to those decision makers to facilitate the process. Many others helped us in this process along the way including PBC patient groups PBCers Organization, PBC Foundation-UK, and other groups, doctors and researchers such as Dr. Gershwin, Dr. Gish, Dr. Veirling , Dr. Lindor, Dr. Hirschfield, Dr. Invernizzi and Dr. Selmi. Professional medical organizations also championed the cause such as AASLD and EASL. Together we achieved something that is virtually impossible to do…change the name of a disease to remove stigma and more accurately describe the disease.
Job well done all!