Explore the research:
Over 250 million people worldwide live with chronic hepatitis B, yet most remain undiagnosed and at risk for liver disease. Improving testing, linkage to care, and access to treatment is essential to reduce the burden of hepatitis B and achieve global elimination goals. As countries continue efforts to improve diagnosis and care, it is equally important to understand the psychological and social consequences of a hepatitis B diagnosis—particularly the impact of stigma and discrimination.
Discrimination related to hepatitis B is defined as unjust, unfair, or prejudicial treatment based on a person’s hepatitis B status. Stigma, on the other hand, is a social process—either experienced or anticipated—characterized by exclusion, rejection, blame, or devaluation resulting from perceived or expected negative social judgment.
To better understand and document these issues, this study explores the lived experiences of people with hepatitis B around the world. It focuses on the types, contexts, settings, and locations of discrimination, as well as the impact such experiences have on individuals and efforts to eliminate hepatitis B.
What inspired this study?
The Hepatitis B Foundation operates a consultation line where individuals with lived experience, as well as their family members and caregivers, can ask questions and share their stories. Between 2019 and 2021, the Foundation began receiving a growing number of reports of discrimination from individuals living with hepatitis B.
To better understand and address these concerns, the Foundation conducted stakeholder interviews with key opinion leaders and experts in the field. Based on insights from these conversations, researchers recognized the need to document and track experiences of discrimination more systematically and to develop advocacy recommendations for change.
In May 2021, the Foundation launched a discrimination registry to provide individuals affected by hepatitis B–related discrimination with a platform to share their experiences and access support resources. This study presents findings and insights gathered from the registry to inform ongoing advocacy and support efforts.
Why is it important?
This study is the largest collection to date of hepatitis B–related discrimination experiences, revealing that such discrimination is a global issue occurring in employment, education, healthcare, and personal relationships. In countries like Saudi Arabia and Pakistan, premarital hepatitis B screening often results in rejected marriage prospects and social exclusion, underscoring how deeply rooted this stigma can be.
Many individuals reported being tested without consent and denied opportunities to work, study, or form relationships—leading to emotional distress, social isolation, and poorer health outcomes. Discrimination also creates economic barriers, forcing individuals to prioritize survival over care and treatment.
A major driver of this discrimination is a widespread lack of knowledge about hepatitis B, even among healthcare providers. Misinformation about transmission and disease progression fuels fear and stigma, highlighting the urgent need for education at both the community and professional levels.
While some countries have anti-discrimination policies, enforcement is inconsistent. As global testing efforts expand to meet hepatitis B elimination goals, there is a critical ethical need to ensure protective measures are in place.
This research underscores the need for stronger policies, education, and supportive services to protect people living with hepatitis B and help them lead full, healthy lives free from discrimination.
What makes this study unique?
This study is unique in that it captures lived experiences of hepatitis B–related discrimination from a global perspective. Patient-reported outcomes—particularly stigma and discrimination—are often overlooked in discussions about hepatitis B. Understanding these personal experiences is essential to developing effective protections, reducing the negative consequences of discrimination, and supporting those affected by the disease.
What is the wider significance of the study findings?
As we approach World Hepatitis Day this year (July 28, 2025), it is important to acknowledge the impact that hepatitis B has globally and account for programming that involves those with lived experience to improve outcomes. Efforts should prioritize mitigating the negative consequences associated with infection and work towards developing public health interventions that address stigma and discrimination including policy measures that prevent discrimination from occurring.
References:
- Hepatitis B Foundation Discrimination Registry. https://www.hepb.org/resources-and-support/hepatitis-b-foundations-discrimination-registry/
- Freeland, C., Qureshi, A., Wallace, J. et al.Hepatitis B discrimination: global responses requiring global data. BMC Public Health 24, 1575 (2024). https://doi.org/10.1186/s12889-024-18918-8
- Freeland C, Mendola L, Cheng V, Cohen C, Wallace J. The unvirtuous cycle of discrimination affecting people with hepatitis B: a multi-country qualitative assessment of key-informant perspectives. Int J Equity Health. 2022;21(1):1–10. https://doi.org/10.1186/s12939-022-01677-6.
- Tu T, Block JM, Wang S, Cohen C, Douglas MW. The lived experience of chronic hepatitis B: a broader view of its impacts and why we need a cure. Viruses. 2020;12(5):1–20. https://doi.org/10.3390/v12050515.