Millions of people living with chronic hepatitis B are unaware they have the virus. So why aren’t they getting diagnosed?

There could be millions of people walking around every day unaware their immune systems are engaged in an invisible battle with a chronic infection that’s putting them at risk for serious health issues. Despite the introduction of a vaccine more than 20 years ago, chronic hepatitis B (CHB) is still very much a public threat, and many live with the virus undiagnosed. The question is: why?

According to the World Health Organisation(WHO), nearly 300 million people globally are living with chronic hepatitis B. However, the Polaris Observatory estimates that only about 10% of these people are diagnosed, and only 5% receive treatment.  

CHB is mostly acquired in early life, as the virus is often transmitted from mother to child during childbirth or infancy. The virus then hides in the liver to avoid the immune system and replicates itself, emitting more virus into the body and releasing particles known as hepatitis B surface antigen (HBsAg) to distract and exhaust the immune cells that are trying to eliminate it.

For scientists researching CHB, there is an added complication. It is a heterogenous condition, which means the onset and progression of the virus are different in different types of patients according to their genetic make-up and immune systems. As a result, not all infections present in the same way, and not all people newly infected with the virus experience symptoms immediately. But there are many innovators and medical professionals working to develop new treatments for CHB. Melanie Paff, VP and Medicine Development Leader at GSK, is one of them.

“Underdiagnosis is particularly worrying to healthcare providers because hepatitis B infections can lead to serious consequences over time,” says Melanie.

“Infection from HBV is considered ‘chronic’ when the body’s immune system is unable to fight off the virus, so it persists in the blood and liver – putting people at high risk of complications such as cirrhosis and liver cancer, which may lead to death.”

According to data from CDA shared by the World Hepatitis Alliance, individuals infected with CHB have a similar or significantly higher risk of developing cancer as someone who smokes one pack of cigarettes per day.

At the moment, there are limited options for those living with hepatitis B, with no one-size-fits-all solutions. And while there are vaccines that help prevent viral infection, immunisation can’t help the millions of people already infected – many of whom are children, and who have to live with the virus and its consequences their whole lives.

Carrying the burden

As well as experiencing the physical symptoms of CHB, a study about the impact of stigma of people living with CHB has shown people living with the virus face additional burdens that impact their wellbeing – fear, anxiety, social withdrawal and even financial loss.

A lack of public understanding about hepatitis B and unfounded fears about the way it is transmitted can lead to stigma and discrimination. Unwarranted concerns that, for example, the infection can be spread by skin-to-skin contact, can cause patients to feel socially isolated. This ultimately creates further barriers to diagnosis, as those at risk may feel reluctant to seek medical help.

Jacki, who lives with CHB in the US, describes the anxiety he feels sharing his diagnosis with others.

“Most people do not want to share that they are infected with hepatitis B, they feel that they are stigmatised and they need to isolate themselves and not tell anyone that they have the virus,” he says.

“At work I started thinking, should I tell my co-workers? Should I let them know? At some point I did kind of tell my colleagues and I don’t know if they all knew at that time or not, but I started to hear back from them, ‘Oh, you have Hep B? Then you shouldn’t eat with me.’”

A patient, Jacki, headshot
Jacki lives with Chronic Hep B in the US

People living with CHB often internalise stigma as well, meaning they can anticipate social rejection or negative stereotyping, in effect stigmatising themselves.

The study about the impact of stigma of people living with CHB also revealed that some people also experience structural and institutional stigma, with one in five believing they may be denied healthcare, and up to 30% stating they may experience workplace discrimination.

Natalia, who lives with CHB in Germany, describes the worry that a diagnosis brings, and the importance of sharing information.

“I was thinking, ‘Have I endangered my daughters?’ I was really worried. This is when the disease started really affecting me. It can have an immense impact on people’s lives.

“Advocacy to other people with hepatitis B is of paramount importance. We make an effort to inform communities about different diseases. With COVID I do understand that it was a different type of virus, but everyone knew what they were dealing with and was bombarded with information.

“I’m really worried about hepatitis B and the impact it will have on my life.”

Jane Dong, Clinical Research Physician at GSK, explains how this can be changed.

“The stigma associated with the hepatitis B virus impacts infection diagnosis, because the fear of being marked out as infected can deter people from coming forward for testing,” she says.

“We need to reduce the stigma associated with this disease through education and increase the global awareness of CHB to prevent the negative effects it can cause in the long term.

“We know that vaccination is an important step in preventing many types of infection. However, for those who already have the hepatitis B infection, to get ahead of the virus we must focus on early diagnosis, monitoring and treatment to reduce the risk for future liver-related complications.”

Getting ahead

With more than half of people with hepatitis B undiagnosed or unaware of their infection, increasing both knowledge and access to screening is crucial.

Getting more people to screenings would increase the number of people diagnosed with CHB. This could mean more people come forward for medical advice, and potentially for treatments that could prevent long-term damage.

The U.S. Centers for Disease Control and Prevention (CDC) recently issued new recommendations for screening and testing for hepatitis B, stating all adults should be screened for HBV infection at least once in their lifetime. People who are not vaccinated for hepatitis B—but are at increased risk of HBV infection— should receive periodic testing.

Similar momentum is building in countries like Australia, where experts are calling for all Australian adults to be screened for hepatitis B.

“We’re still learning a lot about the pathology of liver diseases, but also about the ways that they affect people and about the way that that affects their interaction with healthcare professionals,” says Stuart Kendrick, VP, Global Medical Affairs in Hepatology and Early Assets, and hepatologist.

“Sometimes we need to understand a lot more about how the patient feels about a diagnosis of hepatitis B or another liver disease and how that influences their attitude to treatment because that will really help us to advise them and help them to making a right treatment decision for them.”

The ultimate goal

So how do healthcare professionals treat those patients who do get diagnosed?

Antiviral therapies can help to control the infection. However, lifelong medications are inconvenient and must be administered daily.

The ultimate treatment goal for someone living with CHB is “functional cure”. This is achieved when the virus is undetectable in the blood and the liver, the infection is fully controlled by the immune system without daily medication, and liver function has returned to normal.

While a functional cure does not eliminate HBV from the body, it helps protect people from the worst outcomes of CHB, like cirrhosis and liver cancer, which may lead to death. It also reduces the risk of transmitting CHB to others.

Each day scientists – including those at GSK – discover more about liver diseases, and how we can utilise new technology like AI to match individual patients to the best treatments.

Whilst the ultimate aim is to eliminate CHB entirely, the immediate goal is to make progress towards potential new treatments that can improve functional cure rates among those living with CHB,” Kendrick concludes.

“And, along the way, it’s also crucial to work towards improving education and awareness of CHB to remove barriers to diagnosis and tackle the stigma associated with this condition.”