Hepatitis Stigma Survey: exploring the experiences of living with hepatitis B and/or C

Exploring the experiences of living with hepatitis B and/or C

Stigma and discrimination faced by people living with viral hepatitis continues to be a barrier to elimination. Stigma, often caused by misunderstandings about how hepatitis is transmitted, can drastically affect people’s personal and professional lives and mental health. People living with hepatitis are also subject to discriminatory practices which frequently impact their right to work, study and travel.

 “When I was first diagnosed with hepatitis B, I, like many others, didn’t know it can’t be transmitted through casual contact. I felt a sense of shame and I faced a lot of pressure. The diagnosis really affected my confidence and my mental health. I thought hepatitis B was a death sentence.” –Danjuma Adda  

While global tools are available to measure stigma for tuberculosis and HIV, similar tools are lacking for viral hepatitis. This survey is designed to measure stigma experienced by people living with hepatitis B and C.  It will monitor stigma, discrimination and quality of life indicators and has the potential to truly move the needle regarding stigma and discrimination.  

Phase One

The survey has been developed in partnership with the European Centre for Disease Prevention and Control (ECDC) and with the input of European and global stakeholders and people with lived experience of hepatitis. It will initially be piloted in Europe in Bulgaria, Croatia, Cyprus, Denmark, England, Germany, Romania and Spain.

български (Bulgarian)

Hrvatski (Croatian)

Dansk (Danish)

English

Ελληνικά(Greek)

Deutsch (German)

Română (Romanian)

Español (Spanish)

You can help disseminate the survey by emailing a link to your networks and mailing lists or sharing within relevant support groups.

Check out our communications toolkit for more information.

You can also learn more about the global impact of stigma and discrimination on people living with hepatitis B and recommendations for overcoming this here.