‘I was scared’: Half of Europeans living with hepatitis struggle to tell others about diagnosis

This colorised electron microscope image provided by The Rockefeller University and NIAID shows a hepatitis C virion - Copyright Maria Teresa Catanese, Charles M. Rice/The Rockefeller University, NIAID via AP

By Lauren Chadwick

Published on 09/04/2024 - 00:01•Updated 10:20

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A new survey in multiple European countries showed that people living with hepatitis B and C fear stigma and discrimination, with some saying they were not treated well in healthcare settings.

Half of Europeans living with hepatitis B or C struggled to tell other people about it due to the stigma surrounding the virus.

That’s according to a new survey that will be presented at the World Hepatitis Summit in Lisbon this week.

Hepatitis B and C are viruses that cause inflammation of the liver and can be spread through sexual transmission, sharing needles, or during pregnancy from mother to foetus.

While hepatitis B can be prevented through vaccination, hepatitis C can be cured in most people through treatment.

But if left untreated, these viruses could lead to cirrhosis, liver cancer, and death.

‘Felt like it’s my mistake’

Joy Ko found out she had hepatitis B when she tried to give blood at just 21 years old while studying in the UK. She said when she told her family about the virus, it was very difficult.

Ko, who is now 39, said that her mother first accused her of being promiscuous, and interrogated her about how she had gotten the virus.

“Her reaction made me feel like it’s my mistake,” said Ko, who added that when she first went to get her blood taken, she also felt stigmatised.

“After the first appointment, I also shared this with my boyfriend at that time. I told him I have hepatitis B, but the doctor said I'm fine because my [viral load] is low. All I need to do is just to have regular blood monitoring,” Ko said.

But her boyfriend broke up with her shortly afterwards, saying because of the virus, they didn’t have a future.

Ko said she was so scared about the diagnosis that she stopped going to medical check-ups for five years.

“Even though I was scared, I still [did not] want to go back to the medical system because I feel it's like something dirty and I just don't want to take care of it,” she said.

It was only when her now husband asked her to marry him that things changed. She then shared her diagnosis, and he got her to go to medical appointments.

Ko is now a peer support worker at a clinic in London to help people struggling with a hepatitis diagnosis.

“All of our patients actually keep their diagnosis a secret just like me, and I understand why,” said Ko.

“I can feel their struggle, because I experienced their struggle, their fear, discrimination, anything about that experience”.

Indeed the new survey, conducted by the World Hepatitis Alliance (WHA) and the European Centre for Disease Prevention and Control (ECDC), found that a quarter of participants in seven European countries had not told their friends about living with hepatitis B or C.

Nearly the same amount had not told their families about living with the virus either.

‘Disappointing to see this level of discomfort’

According to the ECDC, roughly six million people are living with chronic hepatitis B and C infection in EU/EEA countries. Yet it’s likely that the number is higher, as many cases go undiagnosed.

In particular, the new survey showed that people with hepatitis B and C experience stigma that can lead them to avoid check-ups.

Nearly half of people living with hepatitis C and more than a quarter of people living with hepatitis B said they were not treated well in healthcare settings, according to the survey.

The viruses can also impact mental health, with over a third of survey participants reporting moderate or severe emotional distress such as anxiety and depression.

“I think it's very disappointing that in Europe we're still seeing this level of discomfort with accessing healthcare,” Cary James, chief executive of the World Hepatitis Alliance, told Euronews Health.

“I think in Europe, we sometimes think that we are a liberal Western society and that healthcare systems treat everyone the same, and I think, unfortunately, this data really shows that for people living with hepatitis, that isn't their experience,” he added.

The survey included 547 participants from the UK, Spain, Germany, Denmark, Bulgaria, Romania, and Croatia, with responses collected in February and March 2024.

James says they hope to have a larger sample size in the future, but that it can be hard to find survey participants because of the stigma around hepatitis. This is in part because the virus often impacts people who are already in marginalised communities.

One takeaway of the survey’s results is the need for more training for medical professionals, he said.

“People living with hepatitis should feel comfortable to be able to go to healthcare settings and get the help that they need,” James said.

“I think that we need more medical training not just at medical school, but throughout people's medical career. So they understand the viruses, they understand the impact that it has on people who are living with it so they can be more sensitive to their mental health concerns,” he added.

Ko added that it’s important for people to have a channel to talk about their diagnosis and that when she reaches out to patients, she is surprised that most are willing to meet her in person.

“They're waiting for someone to talk about it, not in a clinical way [but] about how to live with hepatitis B socially, culturally, and talk about it with your family,” she said.

“So many of them are being discriminated [against]. They were divorced because of the diagnosis, they were separated, they were rejected by their partner because of the diagnosis,” Ko added.

“I really want to tell them, use my story. You can also live a very good life with hepatitis B and you can also get support from your partner”.

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