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 was 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. 

In the first quarter of 2024, the survey to measure stigma and discrimination experienced by people living with viral hepatitis was piloted in selected countries in the European region. The countries selected were: 

Bulgaria, Croatia, Cyprus, Denmark, Germany, Portugal, Spain, Romania, United Kingdom 

The survey is now closed and the results were presented at the World Hepatitis Summit 2024 (Excluding data from Portugal). 

Phase Two

Results from all countries has now been collected and a report will be released later this year.