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Disclosure: How to tell your partner, family, or friends about your hepatitis B or D status: Tips and tricks

 

 

 

 

 

 

 

 

 

Written By: Soumen B., Silvana L., Partizan M. 

Sharing a diagnosis should not be, but often it is, a challenge. At some point it is important to tell your partner, family or friends about your hepatitis B/D status. This is an important moment for you and the people with whom you share your daily life. 

Remember: Your comfort is just as important as the person you choose to talk to. You might be nervous, or you may be worried about what they will think and how they will receive the information you are about to share. You should know that not everyone will understand but you can be prepared with as much information as possible to be sure to set yourself up for success in this conversation. Know that most people do not know about hepatitis B, how it is transmitted or the health problems it causes. But for you, it is a step you should take: to live a normal life, to live honestly and to foster love and sincerity with others. For this, you need to prepare spiritually and emotionally. With preparation, this can be a moment of liberation for you. Remember: you have the right to share exactly as much as you are willing to and nothing more.  

Preparing to disclose your hepatitis B and D status 

Give yourself enough time to understand your emotions and to prepare for the emotions of your loved ones. Before disclosure, it might be helpful to think about the following:  

  • Your readiness: make sure you feel emotionally prepared to talk about your health. Disclose when you feel ready to handle a range of possible reactions.  
  • Their readiness: pick a moment when the other person is likely to be calm, receptive and not distracted or stressed.  
  • Level of trust: assess whether the person is trustworthy, empathetic and respectful of your confidentiality.  
  • Learn about your condition: Understand what hepatitis B/D is, how it is transmitted and how it is managed. This helps you feel more confident when talking to others. 
    • Write down the main things you would like to tell your person: what the disease is, how long you have known, what your condition is and what they can do to check their status.  
    • Read what you have written several times – how do you feel while you are talking? 

Think about why you are sharing this: To protect their health? To ask for their support? Is it about transparency or deepening trust

  • Talk to them and explain what you expect out of the conversation. Maybe you want them to know why you no longer drink alcohol at family gatherings or why you may need more rest than normal. Or maybe you want them to offer you their time and support so that you can talk about your fears. 
  • Choose a calm, private moment when you both have time to talk. 
  • Do not do it under pressure or during an argument. 

 

Now imagine that you are in the role of a listener and your loved one tells you that they have hepatitis B, which you know nothing about.  

  • What would you like to ask them, and to know? Putting yourself in the other person’s shoes will help us to imagine their emotions, fears, denial–these are normal human reactions and they will fade away with the time and the right information given. 
  • Anticipate reactions: Some people may be scared at first, especially due to a lack of information. Be patient. 
  • They may ask you questions that you don’t have an (or don’t want to) answer–be honest and leave that part for another time.   

 

Key points for your conversation: 

  • Share what hepatitis B and D are and how they affect your health. This can help your partner/family better understand the situation and reduce any uncertainties. 
  • Helping your person understand that it is a chronic condition that for some people requires taking a pill a day like so many other chronic conditions, such as high blood pressure, can help “normalize” the disease. 
  • Take the time to explain that a chronic illness does not just depend on the medications you might take, but also on food, exercise, rest and your mental health. 
  • Talk about how this is a shared journey, and that your family members’ or partner’s collaboration will be a key to your success navigating this journey. 
  • How hepatitis B and D Can Be Spread: You can reassure others that there is no risk of transmission in everyday interactions like hugging, sharing food, or casual touch. Hepatitis B and D can spread through contact with blood and other bodily fluids during sexual relations and other blood-to-blood contact. 
  • Emphasize that there is a very safe and effective vaccine for hepatitis B, and prevention is possible. 
  • Check with your local health services to see how they can obtain the vaccine. It may be helpful to give them printed or online materials about the disease or show them a video of patients sharing their stories.   
  • You can live well with proper medical care. 

 

For example, you might say: 

“I want to share something important with you because I trust you and I want to be honest. I was recently diagnosed with hepatitis B (and I also tested positive for hepatitis delta). It’s a virus that affects the liver, but I am under medical care and taking care of myself. I didn’t choose this, but I want you to know because it’s part of my life now.” 

You can also watch this storyteller video, where MD shares her experience disclosing her status to her boyfriend. 

If you are afraid of a negative reaction: 

  • You can say it more neutrally: “I have a liver virus that I am keeping under control with the help of doctors.” 
  • You can ask for the help of a health care professional to clarify the situation for them. 

In everyday reality, the reactions of social groups are different. This is related to various factors such as the level of education, relevant medical information, social relationships and so on. Educational and cultural backgrounds have a significant impact on how individuals and social groups understand and respond to hepatitis B and D.  

  1. Educating your partner or family member
  • Proper education can positively influence people’s attitudes. You should provide as much information as possible when disclosing your status to them. With more information, they may be more open to supporting you rather than perpetuating stigma or having discriminatory attitudes. 
  • By giving them enough information, they can share hepatitis B (and D) information with others, contributing to community education about both diseases, and helping to reduce fear and uncertainty. 
  • Explain to them that this does not have to be a one-time conversation. Reassure them that you are open to talking more about this, so they can ask their questions and start feeling comfortable. 
  1. Cultural Beliefs and Social Norms
  • Be aware and mindful of the cultural background of your partner, or the social norms of your family. This will help you navigate the conversation about your hepatitis B/D. 
  • In many cultures, diseases like hepatitis B and D are associated with taboos. Culture can influence how people perceive these conditions and can create an atmosphere of fear and stigmatization. 
  • In some cultures, there are beliefs that influence how individuals view medical treatment. For example, seeking medical care may be seen as a sign of weakness or an admission of a “problem” that could negatively affect a person’s reputation. This perception may contribute to a negative attitude toward individuals affected by hepatitis B/D. 
  • In some cultures, family and community can provide significant support to individuals with chronic illnesses, such as hepatitis B/D. However, in other cultures, there may be more isolation and limited help, especially if the individual faces stigma. This impacts their emotional well-being and access to treatment. While all of these experiences can happen, know that you are not alone. You can learn more about others experiences through the Hepatitis B Foundation’s storytelling program or connect with others online through the Hep B Community.  

  

These aspects influence knowledge, attitudes, and reactions people may have toward hepatitis B/D. You deserve to be treated with respect and dignity—your life is your own, and no one has the right to diminish that. As you consider sharing your health status, it’s important to reflect on these factors and prepare for the range of responses you might encounter. 

How should you prepare? 

  • Tell those you trust: You do not have to tell everyone. 
  • Focus on facts, not fear: Many people react based on the information they lack, not the facts you know. 
  • Find an ally in the family who can help communicate with others. 
  • Do not blame yourself: It’s not your fault. This is a virus – not a shame. 

 

No matter how the conversation unfolds or what emotions surface, one thing is clear—your loved ones care deeply about your health and well-being. Speaking honestly and from the heart is always a meaningful step. What matters most is choosing the right moment and the words that feel true to you and your experience. 

You can read more about the importance of disclosing your status, and advice for telling your partner or family, in this blog.

About Hepatitis B, CAB Corner, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Living with Hepatitis B, Relationships

Importance of disclosing your hepatitis B and hepatitis D status

 

 

 

 

 

 

 

 

 

Written By: Soumen B., Silvana L., Partizan M. 

Thirteen years ago, I experienced a profound shock. My wife was in the third trimester of her pregnancy, and I was eagerly anticipating fatherhood, filled with plans for our future with the baby. As part of routine procedures, we both were asked to undergo various diagnostic tests. One day, the gynecologist unexpectedly called us in for an urgent meeting. I was asked to wait outside while my wife entered the doctor’s office. When she emerged after half an hour, I noticed a deeply worried expression in her eyes. As I greeted her, she responded with a blank stare, as if the world were crashing down around her.  

We returned home in silence, and then she broke down in tears. My wife shared with me that my blood test revealed I was infected with hepatitis B. How could this have entered my body? The doctor told my wife that the disease was terminal and that I might not survive for long. Our world began to crumble. I have always been a respectful and loyal family member with minimal alcohol consumption. How could this happen to me?  

The most challenging part was figuring out how to explain this to my wife… 

After I was diagnosed, I began online research and reached out to a nonprofit organization (Liver Foundation West Bengal). I gathered information about the disease and accessed health support. I then had an open and candid discussion with my wife, free of embellishments. I explained that I was one of millions affected worldwide and that the disease could have been transmitted through less common means, such as unsterile equipment used during a haircut, like razors, at the salon.* She was extremely cooperative and listened patiently. She also helped me confront the stigma and face the reality of the situation. My wife and I looked up more information so that we could learn about hepatitis B. We talked to our doctors to learn about how we can reduce the risk of transmission and maintain our health. My wife made sure to receive the hepatitis B vaccine, and we made certain that our baby received the vaccine immediately after childbirth.  

Later, I took her to meet members of the nonprofit, including experts and other patients, to engage in an open conversation about the disease and its implications. Both my wife and baby are now vaccinated and protected against hepatitis B infection. 

 

* Hepatitis B is highly infectious, and if tools and surfaces are not properly disinfected, it can survive for up to seven days. If you are exposed to hep B from a small wound (like the ones that happen during a short hair cut or shaving with tools that are not sterilized), even the smallest drops of blood from someone living with hepatitis B could cause an infection. Sexual transmission is a primary mode of transmission for hepatitis delta. 

 

Key Questions and Answers from this Story:  

If hepatitis B is sexually transmitted, how come my partner isn’t infected? 

Hepatitis B virus (and hepatitis delta virus) can be sexually transmitted. The virus is present in an infected person’s blood and bodily fluids commonly exchanged during sexual activity, such as semen and vaginal fluids. There are many reasons your partner might not be positive for hepatitis B after sexual activity including: 

  1. Vaccination status: If your partner has received the full schedule of the hepatitis B vaccine, they are likely protected. The vaccine prompts your body to start producing antibodies that neutralize (attack) the virus. This stops hepatitis B from infecting your body. 
  1. Viral load: The amount of hepatitis B in your blood and bodily fluids—known as the viral load—affects transmission risk. A lower viral load reduces the likelihood of transmitting the virus to your unprotected/unvaccinated partner during sexual contact. 
  1. Type of sexual activity: Different sexual practices carry varying levels of risk. Anal sex poses a higher risk due to potential tissue damage and blood contact. Oral sex is considered “less risky” since it is less likely that there will be blood contact. The presence of cuts or sores can increase one’s risk of infection. It is always a good idea to use protection (latex condoms) when engaging in any form of sexual contact. 
  1. Use of protection: Consistent and correct use of condoms significantly reduces the risk of hepatitis B transmission to your partner by preventing direct contact with infectious fluids. While condoms are crucial in reducing the risk of transmitting hepatitis B (and D) during sex, they do not eliminate the risk completely. New condoms must be used every time you and your partner have sex, from start to finish. Latex or polyurethane condoms are most effective; avoid natural skin (lambskin) condoms, as they are not as good at blocking the virus. 

  

For peace of mind and health assurance, you and your partner should consider: 

  • Testing: A blood test can determine if your partner has been exposed to hepatitis B or has developed immunity from a previous infection. If they are not protected, they should start the vaccination series. 
    • If you are living with hepatitis B, it is important to ask your doctor to test you for hepatitis D. 
  • Vaccination: If a person is not already vaccinated, receiving the hepatitis B vaccine is the only way that one can achieve full protection against the virus.  
    • There is no vaccine solely for hepatitis D, but since hepatitis D relies on hepatitis B to survive, the vaccine protects against both viruses. 
  • Discuss your status: If you are starting a new romantic or sexual relationship, you should consider telling your partner about your hepatitis B (or D) status before any sexual encounter. By sharing your status, you not only instill trust in your relationship and build confidence; you and your partner can also take the necessary steps towards reducing your risk of transmitting the virus.  

You can read more about tips and tricks about disclosing your status to family members in this blog

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Prevention, Liver

Podcast Recaps: Barriers to Hepatitis B Programs in Prisons

 

 

 

 

 

 

 

 

 

Did you know that people in prison are at much higher risk for hepatitis B than the general population? You would think that means there are programs in place to prevent and treat it — but unfortunately, that’s often not the case. 

In a recent episode of the B Heppy podcast, researchers Heidi Emery and Kathryn Jack talk about some of the major barriers to accessing critical hepatitis B prevention and treatment services in prisons. Dr. Emery and Dr. Jack, who work at the University of Nottingham School of Medicine, reviewed prior research on the topic and spoke with people in the prison system — including those who are incarcerated, prison healthcare workers, and even guards — to understand what was happening within the prison system and hepatitis B. 

You can find their published research here.  Additionally, the Hepatitis B Foundation has also released a white paper on recommendations for HBV screening and prevention in corrections.  

Common Barriers to Care: 

  1. Stigma and lack of information about hepatitis B 

One of the biggest roadblocks? People just do not know enough about hepatitis B. There is  a lot of fear and misunderstanding about how hepatitis B spreads and what it means to have it. That leads to stigma — and stigma makes people less likely to get tested or treated. 

  1. Health care isn’t always a priority in prisons

Prisons are mostly focused on safety and security — not health care. That means people might miss appointments because of lockdowns or staffing shortages. Even if someone wants care, they might not get it when they need it. 

  1. Lack of resources

Many prisons just don’t have the staff, funding, or systems in place to handle hepatitis B testing, treatment, or education properly. This makes it difficult for people to get timely education on hepatitis B prevention, management, and treatment. 

  1. No support after release

Often, there’s no follow-up care or connection to outside health services after someone is released from prison. So even if someone starts treatment, it might not continue. People are less likely to follow up with care when they are out of the prison system or may lack the resources to navigate the health system on their own. 

Recommendations to improve care 

Within this review, researchers provided recommendations on how to address these major challenges to hepatitis B prevention, care, and treatment within the prison system. They are described below-  

  1. Education makes a big difference 

When people understand hepatitis B better — both those in prison and those working there, stigma goes down, and people are more likely to get help. Education programs can make a big difference to address low knowledge and stigma. 

  1. Better health systems inside and out 

Connecting prison healthcare to public health systems on the outside means care doesn’t have to stop once someone is released. It can be an opportunity to make sure people stay connected to health care after they get out. 

  1. Policy changes that put health first 

Routine testing and vaccinations for hepatitis B should be part of prison intake. With the right policies, prisons could become places where people actually get the health care they have been missing out on. 

This issue is not just about prisons — it’s about public health. If we ignore hepatitis B in these high-risk settings, we miss a big chance to stop the virus from spreading in communities, too. 

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Treatment, Hepatitis D Drug Development, Liver, Liver Health, Living with Hepatitis B

The dangers of unregulated alternative medicine for people living with hepatitis B: Why evidence-based information matters!

 

 

 

 

 

 

 

 

 

Alternative medicine is becoming more popular, but it can be risky, especially when it’s not regulated. This is a big concern for people living with hepatitis B in places where access to medical care and treatment options may be limited. Some people sell untested treatments, promising quick cures without any scientific proof. These treatments can actually make things worse for patients. It is also important to note that currently there is no cure for hepatitis B but there are safe and effective medications to manage your condition and improve your health. 

Why unregulated alternative medicine is risky:

When alternative medicine isn’t regulated, it means the treatments haven’t been properly tested. For hepatitis B patients, using these treatments can lead to serious health problems. The safety and effectiveness of these treatments aren’t guaranteed, and they can sometimes cause more harm than good. Some practitioners claim their treatments work because of divine intervention and charge high fees, taking advantage of patients’ financial circumstances and leading to false hope in their medical care. 

Why evidence-based health decisions are important:

Making health decisions based on scientific evidence is crucial. Evidence-based medicine uses the best available research and clinical expertise to make decisions about patient care. This approach helps ensure treatments are safe and effective. 

For people living with hepatitis B, evidence-based methods are especially important. Chronic hepatitis B can cause serious liver damage, and managing the condition requires careful monitoring and appropriate treatment. The World Health Organization (WHO) warns that while some alternative medicine practices can be beneficial, the lack of regulation and scientific validation can make them dangerous. 

While the idea of quick fixes through alternative medicine can be tempting, it’s essential for hepatitis B patients to prioritize evidence-based treatments. By doing so, they can make the best decisions for their health and well-being. Always consult healthcare professionals and rely on credible sources to guide your health decisions. 

Safe and effective treatment for hepatitis B: 

People with chronic hepatitis B can live long and healthy lives by making liver-friendly choices like regular check-ups, avoiding alcohol and tobacco, and eating healthily. Approved drugs for adults and children help control the virus and reduce the risk of serious liver disease, though there’s no complete cure yet. 

Treatments fall into two categories: 

  • Immune modulator drugs: Interferon-type drugs that boost the immune system to fight the virus, given as shots for 6 months to 1 year. 
  • Antiviral drugs: Pills taken daily to stop or slow the virus, reducing liver inflammation and damage, usually taken for at least 1 year. 

Not everyone with chronic hepatitis B needs treatment; it’s most effective for those showing signs of active liver disease. 

Helpful resources for hepatitis B patients 

To make informed health decisions, it’s important to rely on credible sources and consult healthcare professionals. It’s also important to do your own research to find out more about the benefits or harms of a medication or herbal treatment. Here are some resources to help: 

Centers for Disease Control and Prevention (CDC): The CDC provides comprehensive information on Hepatitis B treatment options, including antiviral medications and lifestyle recommendations. 

Hepatitis B Foundation: This organization offers detailed guidance on managing Hepatitis B, including the latest research on treatment options. 

 

HDV, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Hepatitis B Research, Hepatitis Delta (HDV), Research

Breaking barriers and improving outcomes: Overcoming challenges in hepatitis B and delta screening, prevention and linkage to care among people who use drugs in Philadelphia

Little is known about the prevalence of hepatitis B and delta viruses (HBV/HDV) among people who use drugs (PWUD). Despite being a high-risk population, awareness of these viruses is still low among both community members and healthcare providers. Two recent studies conducted in Philadelphia, which were led by the Hepatitis B Foundation in partnership with Prevention Point Philadelphia, highlight different aspects of this ongoing public health concern. The first identified barriers to screening, prevention and linkage to care, while the other aimed to dismantle those barriers.

The first study explored the obstacles to HBV and HDV prevention, diagnosis and follow-up care. The study evaluated current knowledge levels and identified the needs and preferences of both people who use drugs and providers that serve them. Data was collected through an anonymous online provider-focused survey, and interviews were conducted with community members, and both medical and non-medical staff from different harm reduction settings in Philadelphia, Pennsylvania.

Interviews with key informants revealed that:

  • 48% of interviewed providers reported confusion about insurance coverage as a barrier to HBV screening.
  • 45% of providers mentioned the need to address and prioritize other pressing health needs, as a challenge to conducting HBV screening.
  • 52% of providers noted patient hesitancy as a barrier to HBV vaccination.
  • 39% of providers identified the need to administer multiple doses as a challenge for completing the HBV vaccination series.
  • 62% of providers reported low knowledge of HDV tests as a barrier to HDV testing.
  • 31% of providers indicated complexity of guidelines as a challenge in HDV testing.

Overall, awareness of HBV and HDV in the community, and among staff and health care workers was low, and stigma related to drug use and harm reduction was a significant barrier to care. There is an urgent need to address this issue in a non-judgemental and non-stigmatizing way that is clear, factual and empowering. Continued financial and political support for harm reduction organizations is essential for improving health care access for people who use drugs. More efforts are needed to overcome barriers to vaccination, testing and linkage to care to create better health outcomes and ultimately increase the quality of life of people who use drugs. 

The second study aimed to assess the prevalence of HBV and HDV and enhance access to care among people who use drugs, through a harm reduction organization (HRO) in Philadelphia. Participants first completed a demographic survey to help researchers gather information about their backgrounds and lifestyles, and to improve understanding of HBV and HDV risk factors within the community. Participants were then screened for HBV, and if they tested positive for certain HBV markers, they were automatically tested for hepatitis delta. 

Of the 498 participants:

  • 25.3% did not have hepatitis B immunity.
  • 52.6% had been vaccinated against HBV.
  • 17.9% had recovered from a past HBV infection.
  • 2.2% tested positive for isolated HBV core antibody.
  • 2.0% tested positive for HBV surface antigen.
  • 0.2% tested positive for HDV antibody.
  • 10% of those who were living with an active HBV infection had an HBV/HDV coinfection.

This study found that rates of current HBV infection in this community were nearly three times greater than in the general U.S. population, and the 10% coinfection rate of HDV is also significantly higher. Risk factors associated with a positive HBV status included a history of incarceration, experiences with homelessness and transactional sexual encounters. These findings highlight the prevalence of hepatitis B and D in this population. These viruses pose serious and critical public health concerns and remain under-prioritized among people who use drugs. Consistent and robust screening, vaccination, and linkage to care efforts can positively impact health outcomes for this community. Approving a hepatitis B point-of-care test (so that people who get tested can get results almost immediately), support in the form of funding and policy to allow HROs to provide full healthcare services, and adequate insurance coverage for vaccines can contribute to positive outcomes for hepatitis B and D diagnosis, prevention and treatment. These recommendations can advance elimination efforts, lower mortality, increase quality of life and center the health and needs of people who use drugs. 

References

  1. Zovich, B., Freeland, C., Moore, H. et al. Identifying barriers to hepatitis B and delta screening, prevention, and linkage to care among people who use drugs in Philadelphia, Pennsylvania, USA. Harm Reduct J 21, 199 (2024). https://doi.org/10.1186/s12954-024-01117-4
  2. Zovich, B., Freeland, C., Moore, H., Sapp, K., Qureshi, A., Holbert, R., Zambrano, J., Bhangoo, D., Cohen, C., Hass, R. W., & Jessop, A. (2024). Dismantling Barriers to Hepatitis B and Delta Screening, Prevention, and Linkage to Care among the PWUD Community in Philadelphia. Viruses, 16(4), 628. https://doi.org/10.3390/v16040628

300 Million Reasons, About Hepatitis B, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Research

AGA Publishes New Guidelines on Hepatitis B Reactivation!

 

 

 

 

 

 

 

 

 

The American Gastroenterological Association (AGA) has released updated guidelines to prevent and treat hepatitis B reactivation (HBVr) among at risk populations. Hepatitis B Reactivation is a serious health issue for many people undergoing treatment for cancer or people on other medications. Learn more about HBVr here. 

Immunosuppressive medications are used to treat many different health conditions and most types of cancers. Sometimes, these medications can cause sudden increases in HBV DNA levels and cause reactivation. This can lead to liver failure, severe liver damage and death. Because reactivation can happen to anyone, it is important to test for hepatitis B before starting any kind of immunosuppressive treatment as this can help doctors understand the patient’s previous or current exposure to hepatitis B and prevent reactivation altogether (Ali et al., 2025). If someone is at risk for reactivation, it can be prevented, and this testing helps to ensure that.  

The new guidelines have identified individuals that are most at risk of HBVr according to their hepatitis B status and the immunosuppressive medications they are receiving. 

People who are positive for chronic hepatitis B are at the highest risk if they take the following medications  

  • Anthracycline derivatives, anti-tumor necrosis factor (TNF) agents, or anti-interleukin-6 (IL-6) therapies. 
  • B cell-depleting agents (E.g., rituximab), chimeric antigen receptor (CAR)-T cell therapies, or cytokine/integrin inhibitors. 
  • Tyrosine kinase inhibitor (TKI) therapies or Janus kinase (JAK) inhibitors. 
  • Liver cancer treatment -transarterial chemoembolization (TACE)) 
  • Co-infected with hepatitis C and on direct-acting antiviral (DAA) therapy. 
  • High doses of corticosteroids for longer than a month 

People who were previously exposed to hepatitis B (through a positive anti-HBc) or if they tested negative for surface antigen are at the highest risk if they take rituximab (a cancer treatment drug) but are at a moderate risk if they take any of the above-mentioned medications or treatments (Ali et al., 2025). 

HBVr can progress rapidly, which is why screening for hepatitis B, prior to beginning treatment for cancers is important. If you take any of the mentioned medications, it is best to discuss with your doctor about your risk of reactivation. If you know about your hepatitis B status, you should disclose it to your provider or ask to get tested for hepatitis B to learn about your risk of reactivation. In the United States, all adults over 18 years of age are recommended to get tested for hepatitis B at least once in their lifetime. 

  • Learn more about the updated guidelines here. 
  • Learn more about hepatitis B Reactivation on our B Heppy Podcast here.  

 

References 

Ali, F. S., Nguyen, M. H., Hernaez, R., Huang, D. Q., Wilder, J., Piscoya, A., Simon, T. G., & Falck-Ytter, Y. (2025). AGA Clinical Practice Guideline on the Prevention and Treatment of Hepatitis B Virus Reactivation in At-Risk Individuals. Gastroenterology, 168(2), 267–284. https://doi.org/10.1053/j.gastro.2024.11.008  

HBV, Hepatitis B Awareness

CHIPO Partner Highlight: Hepatitis Outreach Network

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is led by the Hepatitis B Foundation and is composed of organizations and individuals interested in addressing high rates of hepatitis B infection among African communities globally. Over the past year, CHIPO has grown its membership to include over 70 community-based organizations and federal agencies, all of which are working to raise awareness about hepatitis B among African immigrant communities, and increase rates of screening, vaccination, and linkage to care. This month, we are excited to highlight the work of one of our partners, the Hepatitis Outreach Network (HONE) at the Ichan School of Medicine at Mount Sinai Hospital in New York City, and their Project Coordinator, Assita Belemkoabga. Please enjoy a recent interview with Assita, as she describes her work, including successes and challenges, the positive impacts she and HONE have had, and hopes for the future. 

Could you please introduce yourself and your organization?  

My name is Assita Belemkoabga, and I am the Coordinator for the Hepatitis Outreach Network (HONE) at the Icahn School of Medicine at Mount Sinai. HONE focuses on hepatitis B and C prevention, screening, and linkage to care for immigrant and minority groups in New York City (NYC) for chronic hepatitis B and C. The goals of our organization are: raising awareness and providing education on hepatitis B and C; providing free comprehensive screening for hepatitis B and C, and ALT levels; and connecting people who have completed screening to healthcare services, including vaccination and treatment. My focus is providing HONE services in the African community.  

Could you tell me a little bit about what some of HONE’s programs are that specifically address hepatitis and other health concerns in African communities?  

The HONE program provides hepatitis B and C screening in the community and connects individuals who test positive or require vaccination to medical care and treatment.  

In addition to screening, we also provide culturally sensitive hepatitis B educational presentations which are tailored to specific communities, educating them about transmission, symptoms, treatment options, and prevention. We also do outreach in African, Russian, Chinese and Hispanic communities and foster partnerships with community organizations, places of worship, and leaders to maximize our reach and create awareness. We provide programs in a variety of languages including English, French, Spanish, Mandarin and Russian. In the communities we serve there are many people without health insurance, thus making HONE a viable option for many people. 

Which countries are primarily represented in the African diaspora that HONE serves?  

The HONE program has expanded significantly since its beginning as a research study focused on West African and Asian communities. In the African community, our outreach efforts have not targeted any specific nationalities, but through faith-based organizations (FBOs) we see individuals of various nationalities. This year alone, we have engaged individuals from numerous countries, including Senegal, Burkina Faso, Togo, Ghana, Gambia, Mauritania, Ivory Coast, and Guinea.  

What are some of the biggest challenges in addressing hepatitis and other health concerns at the community level? How have you worked to overcome these? Are there any additional resources that would be helpful to have?  

I have identified three primary barriers to effective health education and outreach from my experience. Firstly, linguistic barriers pose a significant challenge, as many community members may not speak English or French fluently. Secondly, stigma and mistrust towards the healthcare system affect our efforts to engage community members in health education and screening. Lastly, socio-economic factors often take priority over health concerns, leading some individuals to prioritize work over preventive measures.   

To overcome these challenges, community leaders play a vital role in explaining the importance of our program and the benefits of screening. We are also fortunate to have volunteers who assist with on-the-spot translation. However, having access to additional volunteers or health educators who speak one or two major African dialects would be incredibly valuable in helping us better serve our community. 

What are your favorite parts about your job? What got you interested in this work?  

I truly enjoy the sense of fulfillment that comes with making a positive impact in people’s lives. In my role, I have the opportunity to connect with people from diverse backgrounds and provide support, resources, and education that can significantly improve their health and well-being. 

What drew me to this work is the desire to address health disparities and promote health equity, particularly in the African immigrant community that I am part of. Seeing the tangible difference our efforts make in people’s lives is incredibly rewarding. Whether it is helping someone access life-saving treatment, providing education on disease prevention, or simply being a listening ear, I know that my work is making a real difference. That’s what motivates me to continue doing this work. 

Any other thoughts or ideas you’d like to share for improving health and closing health disparities among African immigrant communities in the US? 

Through my experience working with HONE, I have had the opportunity to connect with other organizations doing similar work. Building on this network, I encourage us to continue efficient outreach and providing tailored education. 

Our program at HONE has successfully streamlined the care process: Participants are able to receive a comprehensive initial visit within two weeks of their viral hepatitis B or C diagnosis. The initial visit with a gastroenterologist includes consultation, blood work, Fibroscan, and ultrasound. Expanding this model to a wider audience would be a significant step forward in addressing viral hepatitis disparities in our community. 

Thank you so much for taking the time to speak with me today and for sharing more about the great work HONE has done and will continue into the future! 

HBV, Hepatitis B Awareness, Hepatitis B Research

CHIPO Member Highlight: Africa Health Research Institute

The Coalition against Hepatitis for People of African Origin (CHIPO) is a community coalition co-founded and led by the Hepatitis B Foundation. We are composed of organizations and individuals interested in addressing the high rates of hepatitis B infection among African communities around the world. CHIPO serves as a forum for sharing information and best practices and increasing national and global capacity to improve hepatitis B awareness, testing, vaccination and treatment among highly affected African communities.

This month, CHIPO interviewed member organization, the Africa Health Research Institute in South Africa about their mission, work, and goals, especially related to hepatitis B. Read on to learn more about the great work of this organization!

  1. Could you please introduce yourself and your organization?

I’m Dr. Janine Upton, currently a Project Manager within the discipline of implementation science at the Africa Health Research Institute (AHRI), Durban KwaZulu Natal, South Africa.

AHRI is an independent, transdisciplinary scientific research institute based across two campuses in the province of KwaZulu-Natal (KZN) in South Africa. AHRI’s research combines population, basic and translational, social, implementation and clinical sciences to understand and intervene in the health and well-being of South African communities. AHRI works in partnership with local communities and South African academic, governmental, and other policy stakeholders, and collaborates with over 60 institutions globally. AHRI prioritizes the training of the next generation of African scientists. The work of AHRI’s ~700 scientists, students and staff members is driven by the values of ubuntu, transformation, leadership, innovation, excellence and collaboration.

  1. Could you tell me a little bit more about your organization’s programs and campaigns?

AHRI actively drives an HIV/TB/Emerging Infections (like COVID and Mpox) program, and more recently an HBV agenda, partnering with media outlets (TV/radio), the Department of Health (DoH), schools, the Department of Agriculture (DoA), local municipalities, and South African Police Services (SAPS), amongst others, to educate and raise awareness of these diseases within the populations most affected by them. More specifically, AHRI has recently put hepatitis on its strategic map by establishing the study entitled “Evaluation of Vukuzazi LiVEr disease – Hepatitis B: A study to determine the prevalence and characteristics of chronic hepatitis B virus infection in the Vukuzazi population to inform interventions for diagnosis, treatment and prevention” (EVoLVE). See our website for more details: EVoLVE Hepatitis B Study – Africa Health Research Institute (ahri.org)

EVoLVE aims to address the pressing need to develop insights into local population HBV epidemiology (considering vaccination, exposure and infection), to quantify the need for – and potential impact of – antiviral treatment. EVoLVE also aims to enhance local pathways for the assessment and provision of clinical care to people living with HBV infection in South Africa. Data collected as part of an interdisciplinary collaboration between clinical and social scientists, in consultation with communities, will be used to inform responsive and sensitive-to-context interventions specifically targeting those at greatest risk of infection and disease, and provide clinical care, support and education, whilst developing an evidence-based foundation for future studies.

EVoLVE has already celebrated a successful collaboration between the clinical and human sciences by involving a Community Advisory Board (CAB) in the inductive development of community understanding and perceptions pertaining to the hepatitis B virus (HBV).  In January 2024, the AHRI EVoLVE Team participated in a community engagement with the AHRI CAB and conducted FibroScan training with AHRI clinical and research teams. (FibroScan is a non-invasive ultrasound that measures liver stiffness and fat content to help determine the health of your liver.)

  1. What are some challenges that you face in addressing hepatitis, how have you worked to overcome these? Are there any additional resources that would be helpful to have?

Poor community knowledge, awareness and applicability of HBV

The knowledge of HBV within communities was reported to be very limited and as a result, it is not perceived as a local concern. Poor screening and limited knowledge of prevention methods are other major barriers. Liver disease was not seen as synonymous with HBV, and there was an absence of any isiZulu (indigenous language term) for hepatitis B. Whilst participants were aware of liver disease, they lacked specific knowledge about HBV infection, often misattributing liver disease to alcohol use, traditional medicines, or poor adherence to ART (antiretroviral therapy, typically used to treat HIV infection). Liver disease was perceived to be a “white or rich person’s” disease, and subsequently not a community health concern.

Stigma and discrimination

Stigma and discrimination are a challenge as participants associated the symptoms of liver disease as synonymous with untreated HIV infection, which remains highly stigmatized in South African society. This often resulted in the loss of connections and the withdrawal of social support from families and communities. Caregivers, family members or other members of the community also experienced discrimination when trying to support someone suffering with liver disease. Additionally, participants described negative healthcare experiences, feeling dismissed and ignored by health care workers.

Inequitable access to healthcare

For people living with hepatitis B (PLWHB) who are advised to undergo long-term treatment, adherence presents a significant challenge, particularly for those experiencing food insecurity. These individuals often face the dilemma of prioritising feeding their families over covering the costs associated with treatment. Even when medication is provided at no cost, additional expenses such as transportation to healthcare facilities and time away from other responsibilities create financial burdens that are difficult to manage. As a result, many individuals become discouraged and instead seek support from traditional healers, who are more accessible within their communities.

You can learn more about health care challenges here:

https://www.sciencedirect.com/science/article/pii/S2055664024000153?via%3Dihub)

In terms of additional resources, we were able to secure a small project grant from University College London, called ‘Grand Challenges,’ but longer-term funding will be needed to build on these foundations.

  1. What do you think are some of the biggest barriers against raising awareness and addressing rates of hepatitis screening and linkage to care at the local and national levels, and what more do you think can be done in this sphere of awareness building?

There is an urgent need to identify social and psychological barriers to treatment adherence and develop strategies to overcome them, whilst concurrently adopting a social and medical focus on the identification of the determinants of health. In so doing, strengthening messaging and information available for the uptake of communities and empowering individuals and communities to improve health outcomes and reduce HBV transmission is critical. The hope is to at the same time address the misconceptions around the disease and reduce the stigma and taboo that occur within the silence surrounding the topic. This will assist in the scaling up of resources required to promote knowledge of the disease in communities, and encourage support systems necessary to improve mental health and treatment outcomes.

  1. What are your favorite parts about your job and what got you interested in this work?

I love the problem-solving that comes with my job – that people can come to me with novel and ever-changing requests and challenges to which I can apply my mind. Essentially – that is research! It’s identifying a real-world problem and applying your mind in finding solutions! I feel like the nature of the work we do at AHRI is meaningful and seeing this reflected in longitudinal data is truly rewarding. I love the field of health, it’s always been a passion of mine, so being able to combine a passion with a strength in enriching ways is fulfilling to me!

Links to some presentations:

Web page: https://www.ahri.org/evolve-hepatitis-b-study/

Other materials: https://doi.org/10.6084/m9.figshare.25237756

Useful links:

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Liver

Why Access to Birth Dose Remains a Challenge Despite Availability of Vaccine. 

 

 

 

 

 

 

 

 

 

Birth dose is the most critical public health tool to prevent the spread of new hepatitis B infections among newborn children. Vaccination at birth provides lifelong protection against hepatitis B and reduces the chances of developing chronic hepatitis B. However, access to birth dose and vaccinations for children remains a challenge in many countries, especially countries low- and middle-income countries with high prevalence of hepatitis B, despite the availability of safe and effective vaccines.  

Lack of Knowledge 

Many communities are unaware of the hepatitis B virus and how it can cause severe damage to the liver, especially for newborn children. Mothers who deliver children at home or without appropriate medical care are also less likely to get the birth dose for their babies. Lack of knowledge about the spread of the virus and vaccination persists among some medical providers and professionals as well, making it harder for families to get birth dose for their children in a timely manner. Misconceptions about the virus and the vaccine also makes it difficult to get children vaccinated. Educational campaigns should focus on raising awareness about the hepatitis B virus and teaching communities about the role of the birth dose in preventing serious liver disease and death (Freeland et al., 2023).

Cost and Transportation 

Many families mentioned cost to be a barrier to getting the birth dose for their children. For some mothers, they were unable to deliver at health facilities or lacked safe transportation to get to a health facility to get their children vaccinated. For families who lived in rural areas, finding a nearby health facility was a challenge. This also makes it difficult for mothers to return to the health facilities to get the remaining doses for their children.  

Lack of Political Will and Advocacy 

While the birth dose is available in many countries with high rates of hepatitis B, it is not always accessible to people who need it most. Local governments and health ministries must lead national vaccine advocacy campaigns to spread awareness about the availability and importance of getting children vaccinated at birth to prevent hepatitis B. Additionally, the hepatitis B birth dose should be available to all families at no cost. Vaccine advocacy efforts should focus on debunking myths and misconceptions about the virus and the birth dose.  

GAVI, the Vaccine Alliance has launched a new initiative to tackle some of these challenges and expand access to hepatitis B birth dose where it is needed most. Learn more about the new vaccination programme here.

 

References:  

Boisson, A., Goel, V., Yotebieng, M., Parr, J. B., Fried, B., & Thompson, P. (2022). Implementation Approaches for Introducing and Overcoming Barriers to Hepatitis B Birth-Dose Vaccine in sub-Saharan Africa. Global health, science and practice, 10(1), e2100277. https://doi.org/10.9745/GHSP-D-21-00277 

Freeland, C., Kanu, F., Mohammed, Y., Nwokoro, U. U., Sandhu, H., Ikwe, H., Uba, B., Asekun, A., Akataobi, C., Adewole, A., Fadahunsi, R., Wisdom, M., Akudo, O. L., Ugbenyo, G., Simple, E., Waziri, N., Vasumu, J. J., Bahuli, A. U., Bashir, S. S., Isa, A., … Tohme, R. A. (2023). Barriers and facilitators to hepatitis B birth dose vaccination: Perspectives from healthcare providers and pregnant women accessing antenatal care in Nigeria. PLOS global public health, 3(6), e0001332. https://doi.org/10.1371/journal.pgph.0001332 

HBV, HDV, Hepatitis B Awareness, Hepatitis Delta (HDV), Liver, Living with Hepatitis B

Nargis Speaks about Living with Hepatitis Delta

The hepatitis delta virus is a sub-virus of hepatitis B that depends on the hepatitis B virus to survive and reproduce. Hepatitis delta affects between 5% and 10% of people living with hepatitis B, and can quickly progress to a more serious and advanced liver disease than HBV alone. Since 2016, the Hepatitis B Foundation has coordinated a program called Hepatitis Delta Connect, which works to raise awareness of hepatitis delta; promote screening, research, and management of the virus; and provide support to individuals living with and affected by the disease. This includes capturing the lived experiences of hep D. This month, Ariana, an intern at the Hepatitis B Foundation, interviewed Nargis, a resident of New York, who is living with hep B and hep D, about her experiences of the viruses, from diagnosis to management. We thank Nargis for sharing her story!

Ariana: Thank you very much for joining today! When were you initially diagnosed with hepatitis delta?

Nargis: I was diagnosed in 2005. I did my blood work at the end of 2005 and got my result at the beginning of 2006. The reason why I went to do the blood work is because I had very severe flu-like symptoms.

Ariana: How did you find out you were living with hepatitis delta?

Nargis: I was out of the city for a trip, and felt sick after, so I immediately returned to the city and did blood work and found that it’s hepatitis D. I was surprised because I know if you don’t have hepatitis B, hepatitis D would never exist in your body. 

Ariana: How did you initially feel about it?  

Nargis: To be honest, I was depressed. It happened during the best time of my life when my career was at a high point, and I’m feeling like I’m enjoying life and everything is fine. All the difficulties in my life were gone. During that time, I was at the top of the level of my career and I could do something for myself and for my family. And I had big plans, and when I was diagnosed with hepatitis B, all my plans just collapsed. My doctor just straight up told me that I’m lucky to have Hepatitis B and D, not C. They did not give me any kind of psychological support, and I was extremely depressed. Thank God for my family and my husband for being there to support me always.

I’m originally from Dushanbe, Tajikistan. It’s a small country in central Asia. Unfortunately we don’t have enough good medicine to help with this kind of thing, as the government is not supporting nor providing any kind of medication. The medication I needed had to be ordered from Russia to bring here, and was very expensive. The prices go up and down. And, this one is also not guaranteed to work. I got interferon, but it didn’t work for me. After one month of injections, I got very, very sick. And the doctor decided to stop it. 

Ariana: How do you think this disease has impacted your physical state?  

Nargis: Mostly it’s the mental changes when you are becoming depressed, but when you’re starting the treatment, you feel so weak. I had severe weakness, fatigue. I also had GI (gastrointestinal) problems as well.

You get kind of the nausea, no vomiting, just the nauseous feeling. But in the morning, you are feeling fatigued. You are always the one to sleep and have joint pain. Now I’m just feeling kind of the joint pain, but when I’m starting to work or do some activity, I get tired. I always feel the fatigue, you know, or the fatigue sometimes is so much, I don’t want to even do anything, but I always push to do things I should do. I often get bad pain.

But I’m always appreciative, you know, as I am still alive, and I have to thank my family for that.

Thank God. My third daughter was checked for hepatitis B and D too. Thank God, she got her vaccination, which is making us happy. Now I have four kids, and I’m calling my fourth child my miracle child, she gives me so much happiness. 

And all of them, all my kids are free from hepatitis B. They got all the vaccinations, my husband as well. And routine family life and my job are like keeping me in the life, making me happy, and I’m not thinking so much about my hepatitis. Thank God, I have my arms, my legs and I can eat, I can walk, I can see. This is more than enough to keep me happy.  

Ariana: Why is raising awareness of hepatitis delta important? 

Nargis: It’s important for people to know about it and I’m talking about my experience. I didn’t catch it from receiving medical care in my country, but a lot of people don’t know about this one and, if you don’t know, you don’t pay attention. We must be careful with  needles [which can possibly transmit hepatitis delta].

It is important to make information booklets, allowing patients to talk about their experiences, finding people similar to us, and we are people, we still have this disease, but we are very active, we can work, we can sing, do something good. 

It is better if you support each other as well, every person is important in this life, every person can be very important for somebody else.

People must know. If you’re somebody who doesn’t have education, maybe there’s some pictures with a simple explanation to tell them. It really works because, when HIV and AIDS existed in this world last century, the people didn’t know so much about it. And when the other foundations and the people and mass media started to get to work and explain, and gave out the information booklet, people are starting to pay attention now. And I’m thinking this can work for hepatitis as well.  

Ariana: What do you wish more people knew about this disease? 

Nargis: It’s hard to always be healthy. I wish for everybody to be healthy, but it’s now hard to be healthy, because you never know where you can catch hepatitis…And just so I can wish for people to keep their eyes open and not be afraid.

Keep your eyes open. Where are you going? What are you eating? Which kind of medical offices are you going to? If you have the blood transfusion, using the needles or something, or some kind of tools used for dental procedures, just to make sure all of them, they’re sterilized and clean. 

Be open mentally and healthy. It will help you in this kind of situation as well. You know, talk with somebody if you can talk with some of your family members or with people from outside. I’m an open person, and for me, it’s very, very helpful.

Also, Dr. Kushner invites me to Zoom classes where I hear about the Hepatitis B Foundation, the kind of research you have, what the people around the world are trying to do and how to help patients. It’s given me support. It’s given me kind of the hope that not everything is lost and I believe that some medication will be invented soon in the world to help the millions of people with hepatitis B and D. 

Ariana: What resources do you think you would have wanted initially when you got diagnosed with hepatitis delta?  

Nargis: Getting the right medication for people is very important. Insurance companies should help the patient to get the right medication. And also, I’ve been in a research study and the first research study I got is a medication for hepatitis B and D. The doctor teams are working specifically with this kind of patient when the patient goes to the hospital and does the blood work to see the level of the hepatitis B and D and also the liver enzymes. 

Also patients are depressed and always need some support group, maybe some social workers can closely work with people who have hepatitis B and D.

Ariana: Do you think there’s anything else you would like to share about your experience? 

Nargis: I would like to tell the people who have hepatitis B and D, do not be afraid. The doctors are working, and the research team is working hard. We’re not alone in this world. The Hepatitis B Foundation and many others are working on this problem. Do not lose hope. Be powerful, be happy, thank God we are alive, and support each other.

Ariana: Awesome. Thank you so much for sharing your insight and experiences with us today!

Baruch S. Blumberg Institute