Half the people living with hepatitis B or C struggle to tell others about their condition and a quarter had not told their families of their diagnosis, concluded a first-ever European study on the stigma related to the disease.

Findings from the multi-country study, conducted by the World Hepatitis Alliance (WHA) and the European Centre for Disease Prevention and Control (ECDC), were presented during the World Hepatitis Summit taking place this week in Lisbon. The actual report will be released in the coming weeks.

“Living with hepatitis is challenging enough, and the added burden of discrimination whether in social or healthcare settings can have a hugely negative impact on peoples’ quality of life,” said Cary James, Chief Executive of the World Hepatitis Alliance.

“More needs to be done to reduce the stigma that surrounds hepatitis. Our ambition for this new study is to help policy makers formulate informed policies and strategies to reduce stigma and discrimination among people living with hepatitis and improve their quality of life.” 

Hepatitis is a liver disease affecting 350 million people worldwide. Every year, over a million people lose their lives because of related conditions.

Hepatitis B and C are transmitted mostly through blood or sexual contact, which is the basis of the existing stigma.

Negative attitudes 

“When I told my friends and family I am living with hepatitis it was hard at first. My mother’s response was toxic and she accused me of being sexually promiscuous outside of my studies,” said Joy Ko, a Peer Support Worker at the Bloomsbury Clinic living with hepatitis recalls.

“I was once disengaged from the care for five years because of fear and stigma and received no support at all,” continues Ko. 

According to the study, nearly half of people living with hepatitis C (46%) and over a quarter (26%) of people living with hepatitis B reported not being treated well in healthcare settings.

In effect, four out of ten of those with hepatitis C and one in six people with hepatitis B (17%) avoided receiving health care services when they needed them because of the expected discrimination and stigma. The worry was often not exaggerated: 38% of people with hepatitis C reported hearing healthcare workers talking inappropriately about them. 

Feeling judged and concealing this diagnosis had a negative effect on patients’ mental health burden. Over a third of people living with hepatitis B and C, even when cured, report experiencing some emotional distress such as anxiety or depression.

Ending stigma, ending hepatitis

Andrea Ammon, director of the ECDC says “Stigma surrounding hepatitis perpetuates discrimination and undermines efforts to prevent and control the disease. Education, awareness but also key policies are crucial for promoting understanding and support for those affected.”

The WHO also stresses that ending the stigma surrounding hepatitis is a key element of hepatitis elimination.

As many WHO countries are delayed in reaching the target of eliminating viral hepatitis by 2030, ending the related stigma could be an important factor to curb the disease, CDA Foundation’s Polaris Observatory noted.

A new WHO report released on Tuesday shows only 13% of people living with chronic hepatitis B infection had been diagnosed. Moreover, only about three percent had received antiviral therapy at the end of 2022. Hepatitis C paints only a slightly better picture, with 36% of patients who had been diagnosed and 20% had received curative treatment.

“I believe it is the start of our recovery journey when we can talk about it,” Joy Ko noted on her work with patients. “People living with hepatitis must know they are not alone in their diagnosis and there is lots of support available to them.”