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. 2025 Apr 14;9(5):e0677.
doi: 10.1097/HC9.0000000000000677. eCollection 2025 May 1.

A nationwide study of primary biliary cholangitis prevalence, geographic distribution, and health care providers

Cynthia Levy  1   2 , Keri-Ann Buchanan-Peart  3 , Joanna P MacEwan  4 , Alina Levine  4 , Radhika Nair  5 , Darren Wheeler  5   6 , Leona Bessonova  5 , Aparna Goel  7 , Robert G Gish  8 , Alan Bonder  9
Affiliations

A nationwide study of primary biliary cholangitis prevalence, geographic distribution, and health care providers

Cynthia Levy et al. Hepatol Commun. .

Abstract

Background: Prevalence estimates of primary biliary cholangitis (PBC) in the United States have evolved with the introduction of newer real-world data capture approaches. Little is known about the geographic distribution of PBC in the United States and the health care provider (HCP) landscape for patients with PBC. This real-world study aimed to estimate the prevalence of PBC in the United States, assess regional variability in its prevalence, and describe HCPs for patients with PBC.

Methods: Patients with PBC were identified using Komodo's Healthcare Map, a large national administrative claims database. PBC prevalence per 100,000 adults was adjusted by age and gender at the 3-digit ZIP Code tabulation area level. Patients' PBC-related medical or pharmacy claims were used to determine HCP specialties and affiliations (academic vs. nonacademic); the latest claim and all claims were examined.

Results: The adjusted 2021 PBC prevalence was 40.9 per 100,000 adults. The highest absolute number of patients with PBC in the United States was in heavily populated urban areas, but prevalence adjusted for population size was highest in some rural areas. Among all claims, most (83.2%) patients received care from a specialist (gastroenterologist/hepatologist) at one time. However, only approximately half (53.5%) of patients with PBC, irrespective of therapy use, were most recently treated for PBC by a specialist.

Conclusions: This is the most comprehensive and contemporary estimation of PBC prevalence in the United States to date. The pockets of high prevalence of PBC located in some rural areas highlight the need to better evaluate PBC risk factors and potential barriers in access to specialist care once patients are diagnosed. Greater awareness of PBC and its management are needed.

Keywords: PBC; epidemiology; liver disease; regional variability; specialist.

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Conflict of interest statement

Cynthia Levy: Institutional research grants from Calliditas, CymaBay, Escient, Gilead, GSK, Intercept, Ipsen, Kowa, Mirum, Target RWE, and Zydus; consulting fees from Calliditas, CymaBay, Gilead, GSK, Intercept, Ipsen, Kowa, Mirum, and Target RWE. Joanna P. MacEwan and Alina Levine: Employees of Genesis Research Group. Radhika Nair, and Leona Bessonova: Employees of Intercept. Darren Wheeler: Former employee of Intercept. Aparna Goel: Consulting/advisory boards for Gilead, Intercept, Ipsen, and Mirum. Robert G. Gish: Grant/research support from Gilead; consultant and/or advisor for Abbott, AbbVie, Altimmune, Antios, Arrowhead, Dynavax, Eiger, Eisai, Enyo, Genentech, Genlantis, Gerson Lehrman Group, Gilead, Helios, HepaTx, HepQuant, Intercept, Janssen, Merck, Pfizer, Topography Health, and Venatorx; current activity with scientific or clinical advisory boards for AbbVie, Dynavax, Genlantis, Gilead, Helios, HepaTx, HepQuant, Intercept, Janssen, Pfizer, and Prodigy; current clinical trials alliance with Topography Health; chair of clinical advisory board for Prodigy; advisory consultant (diagnostic companies) for Fujifilm/Wako, Perspectum, Quest, and Sonic Incytes; data safety monitoring board for CymaBay, Durect, and Takeda; speakers’ bureau for activities focused on hepatitis B, C, and D virus, and liver cancer, specifically epidemiology, diagnosis, and treatment. In addition, there were program presentations on vaccination for hepatitis B virus and the management of complications of cirrhosis; speaker’s contract for promotional talks for AbbVie, BMS, Eisai, Genentech, Gilead, and Intercept; minor stock shareholder (liver space noted only) for CoCrystal and RiboScience; stock options with AngioCrine, Eiger, Genlantis, HepaTx, and HepQuant. Alan Bonder: Consulting for Chemomab, CymaBay, Genfit, and Guidepoint; research grants from Chemomab, CymaBay, Gilead, GSK, Intercept, and Mirium; medical monitor for Pfizer. Keri-Ann Buchanan-Peart has no conflicts to report.

Figures

None
Graphical abstract
FIGURE 1
FIGURE 1
2021 prevalence of primary biliary cholangitis per 100,000 adult population by 3-digit ZIP Code tabulation area. Rate is defined as number of patients per 100,000 adult population.
See this image and copyright information in PMC

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