Nonprofit spearheads call-to-action to raise awareness of differences between PBC, PSC

BOSTON — PSC Partners Seeking a Cure announced a call-to-action for medical stakeholders to be more aware of patients and to better understand the difference between rare liver diseases to enable prompt diagnosis and proper treatment.

With the recent renaming of primary biliary cholangitis (PBC) — formerly known as primary biliary cirrhosis — PSC Partners Seeking a Cure, a U.S.-based nonprofit that provides education, support and research funding for primary sclerosing cholangitis (PSC), sought to use The Liver Meeting as a platform to alert clinicians of potential for confusion between the two diseases and the importance of correctly identifying them, according to a press release. PSC Partners Seeking a Cure has teamed up with PSC Support, a nonprofit in the U.K., to raise awareness.

“We are seeing confusion in identifying the two diseases in medical publications, among regulatory bodies and in medical practice,” Ricky Safer, CEO and founder of PSC Partners Seeking a Cure, said in the release. “The two conditions are confused all too frequently.”

The two disease are rare, according to Safer, so misdiagnosis can lead to inadequate treatments and disease management for patients, which can also lead to missed opportunities for participation in groundbreaking clinical trials.

“The rarity of the two diseases and the similarity in the names of the two diseases risk perpetuating a misconception among those without expertise that the two conditions are the same,” Safer said. “It can be damaging for patients to subsequently receive poor medical advice about their futures because of inadequate diagnosis, or misunderstanding of their disease by treating clinicians.”

Last year, patients led a name change initiative for PBC, where it changed from primary biliary cirrhosis to primary biliary cholangitis. They sought to remove cirrhosis from the disease name to prevent the misconception that PBC is caused by alcohol overuse and to avoid stigma attached to the word cirrhosis. Because of new treatments and better diagnosis, cirrhosis no longer characterizes the disease as often, according to the release.

Gideon Hirschfield, MA, MB, PhD, professor and consultant hepatologist, University of Birmingham and University Hospitals Birmingham, UK, spoke with Healio.com/Hepatology about the importance of this initiative from a clinician standpoint. See his video perspective here.

Disclosures: Safer is a volunteer with PSC Partners Seeking a Cure. Hirschfield reports consulting for Intercept, BioTie, Lumena, Medigene and Janssen.