This year’s theme is “Ask me about PBC”, a conversation starter involving the whole of the international patient community. The PBC Foundation is encouraging people to find out more about PBC, to educate about this condition and to feel empowered in the process.
Previously called primary biliary cirrhosis, PBC is a chronic disease in which the bile ducts in the liver are progressively destroyed. The change in name was a massive move in ‘normalizing’ the condition and has done immeasurable good by removing the stigma of PBC being associated with cirrhosis and alcohol mismanagement. In PBC, chronic inflammation, fibrosis and irreversible scarring of the liver can lead to liver failure, with some patients ending up needing a liver transplant. It is also a disease that predominantly affects women, with a female to male ratio of 9:1. Patients with PBC live with symptoms such as itch and fatigue which can be incredibly debilitating. Now URSO (ursodeoxycholic acid or UDCA) is the primary treatment and OCA (obeticholic acid) and fibrates are secondary treatments, but they cannot cure the disease itself. Patients need early diagnosis and validation of their condition, access to timely therapy and multidisciplinary care.
So much has been achieved in recent years, but so much more needs to be done, which is why we need a strong patient environment to be the voice of patients. Spread the word and “Ask me about PBC” today!
