Article in Liver Disease on July 2, 2025: “Nearly half of PBC patients in US haven’t seen a specialist recently.”
Primary Biliary Cholangitis (PBC), formerly known as primary biliary cirrhosis, is a chronic autoimmune disease of the liver. It involves the progressive destruction of the bile ducts, leading to a buildup of bile and other substances in the liver, and eventually, liver damage and scarring (cirrhosis).
“These findings highlight that ‘most patients with PBC, irrespective of therapy use, were treated by a specialist (gastroenterologist or hepatologist) at some point during the study period, but only approximately half received specialist care in their most recent claim,’ the researchers wrote. ‘Greater access to specialist care once patients are diagnosed to support awareness of PBC and its management is needed.’”
Here’s a summary about PBC patients and specialist care:
KEY POINT: There appears to be a substantial care gap—nearly half of PBC patients aren’t seeing specialists regularly, which may negatively impact their long-term health outcomes.
PREVALENCE: Primary biliary cholangitis (PBC) affects roughly 40 per 100,000 adults in the U.S.
SPECIALIST CARE GAP: Almost 50% of PBC patients reported that they had not visited a liver specialist (hepatologist) in the recent past .
NET NET: Regular specialist follow-up is crucial, as PBC is an autoimmune condition that progressively damages the bile ducts—potentially causing cirrhosis, liver failure, and symptoms like fatigue and itching. Being under expert care ensures early detection of complications and access to appropriate treatments.
Last, quick note about PSC vs PBC:
Primary biliary cholangitis (PBC) and primary sclerosing cholangitis (PSC) are both autoimmune liver diseases affecting bile ducts, but PBC primarily impacts the small, intrahepatic ducts, while PSC affects both small and large intra- and extrahepatic ducts. PBC is more common in women, and linked to other autoimmune disorders, while PSC is more prevalent in men and associated with inflammatory bowel disease (IBD). There’s no effective treatment for PSC, but UDCA can slow liver damage in PBC.
