Hepatitis Stigma Survey: 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.
A new tool
While global tools are available to measure stigma for tuberculosis and HIV, similar tools have been lacking for viral hepatitis.
The Hepatitis Stigma Survey is designed to address this gap and measure stigma experienced by people living with hepatitis B and C. It monitors stigma, discrimination and quality of life indicators, and has the potential to truly change the status quo.
“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
Results
The survey was developed in partnership with the European Centre for Disease Prevention and Control (ECDC), with the input of European and global stakeholders and people with lived experience of hepatitis.
In early 2024 the survey was piloted in Bulgaria, Croatia, Cyprus, Denmark, Germany, Portugal, Spain, Romania and the UK. The data is startling.
- 57% of those affected by hepatitis C and 46% of those living with hepatitis B found it difficult to tell people they are/were living with hepatitis.
- 70% of those affected hepatitis C and 44% of people living with hepatitis B have/had concerns they could pass it on to others.
- 24% of those affected by hepatitis C and 15% of those living with hepatitis B reported avoiding going to healthcare services when they needed to because they expected to be treated differently.
Webinar
Missed our webinar? You can now watch the recording of our engaging session sharing results from our joint survey with the European Centre for Disease Prevention and Control (ECDC).
The survey gathered data on stigma and discrimination experienced by people living with hepatitis B or C in nine European countries.
The results show how people navigate a world of relationships based unfairly on their hepatitis status, the barriers this creates to them getting tested and treated, and the impact it has on hepatitis elimination efforts everywhere.