Author information

¹Hepatitis B Foundation, Doylestown, PA, USA. Freeland@hepb.org.

²Hepatitis B Foundation, Doylestown, PA, USA.

³Coalition to Eradicate Viral Hepatitis in Asia Pacific, Singapore, Singapore.

⁴Burnet Institute, Melbourne, Australia.

⁵Centre for Social Research in Health, University of New South Wales, Sydney, Australia.

⁶The National Organisation for People Living with Hepatitis B (NOPLHB), Kampala, Uganda.

⁷St.Paul's Hospital Millenium Medical College, Addis Ababa, Ethiopia.

⁸Yellow Warriors Society of the Philippines, Baguio, Philippines.

⁹Inno Community Development Organisation, Guangzhou, China.

¹⁰Hepatitis Foundation of Ghana, Accra, Ghana.

¹¹Center For Initiative and Development, Taraba, Nigeria.

¹²World Hepatitis Alliance (WHA), London, UK.

¹³Medical Research Council Unit, The Gambia at London School of Hygiene and Tropical Medicine, Serrekunda, Gambia.

¹⁴Division of Digestive Diseases, Imperial College London, London, UK.

¹⁵Public Health Unit, Population Health, Johns Hopkins Aramco Healthcare, Dhahran, Saudi Arabia.

¹⁶Storr Liver Centre, The Westmead Institute for Medical Research, The University of Sydney at Westmead Hospital, Westmead, Australia.

¹⁷Centre for Infectious Diseases and Microbiology, Sydney Infectious Diseases Institute, The University of Sydney at Westmead Hospital, Westmead, Australia.

¹⁸HepBCommunity.org, Sydney, Australia.

Abstract

Over 250 million individuals live with chronic hepatitis B (CHB) infection worldwide. A significant proportion of these people often face discrimination defined as the unjust, unfair, or prejudicial treatment of a person on the grounds of their hepatitis B status. Hepatitis B related discrimination has not been widely documented in the literature. This study aims to describe the lived experience of discrimination, document its impact, and shed light on its consequences. A hepatitis B discrimination registry was launched to record self-reported discrimination associated with hepatitis B. The registry included brief demographic questions (age, gender, country of origin), discrimination-specific questions (where, when, and how discrimination occurred), and open-ended questions to detail specific experiences. The registry was distributed to hepatitis B patient/people-focused listservs, social media networks, and community-based organizations around the globe. Descriptive data were analyzed including comparative analysis by country and type of discrimination occurring along with qualitative data (open-ended responses) which were analyzed using thematic analysis techniques A total of 569 individuals responded to the survey between May 2021 and December 2023. Individuals identified as residing in the Philippines (34%; N = 194), Nigeria (11%; N = 60), Pakistan (8%; N = 45), India (6%, N = 34), Uganda (5%; N = 31), the United States of America (4%, N = 26), Ghana (3%; N = 15), Ethiopia (2%; N = 14), and other countries in smaller number with a total of 65 countries reported discrimination at least by one individual. Of these, 461 individuals shared details about their experiences of discrimination with most relating to restrictions on access to work visas, followed by in-country hepatitis B-related employment restrictions, educational-based discrimination, discrimination within the community and health facilities, and the emotional impact of hepatitis B discrimination. This is the largest primary collection of hepatitis B-associated discrimination events and highlights how hepatitis B discrimination clearly has a significant impact on individuals' lives and limits economic opportunities regardless of physical symptoms. Such impacts likely act as barriers to diagnosis and engagement in care, so need to be addressed to achieve the global hepatitis B elimination goals. The data highlight a need for global, national responses and more systematic responses to discrimination experienced by people with hepatitis B.