Hep B Blog

Category Archives: Hepatitis B Awareness

Reactivation with Hepatitis B: Understanding Risk Factors and Prevention Strategies

Understanding the hepatitis B virus and the panel of blood tests needed to determine infection or immunity can be a stressful and challenging task. In simplest terms, “hepatitis” means liver inflammation and the hepatitis B virus can ultimately cause liver inflammation. The liver is an important organ in the human body and responsible for the removal of toxins and regulation of digestion (learn more about the function of the liver here). The hepatitis B virus can infect and disrupt critical functions of the liver in supporting your overall health. 

How the hepatitis B virus works 

In the case of the hepatitis B virus, the host is the liver cell. As the virus makes more copies of itself, the liver may become damaged, and sometimes it is unable to carry out its essential tasks to regulate metabolism, nutrients, and digestion. It is best to prevent hepatitis B infections when we can – and since antibodies are the best defense against the virus, the hepatitis B vaccine can be used to signals the body to make antibodies to fight the virus. The hepatitis B vaccine provides lifelong protection from the virus. However, this is only possible before infection with the virus. If somebody is already infected with the virus, antiviral therapy is used to control the virus and prevent liver damage – antiviral medications disrupt the life cycle of the virus by disabling viral receptors from binding to liver cells. 

Blood test panel to diagnose hepatitis B: 

The only way to tell someone’s hepatitis B status is through a panel of blood tests – the tests are all done at one time, and only one small tube of blood is needed. These tests are not included in routine testing, so it is important to ask your doctor to test you for hepatitis B or try to find a free screening event near you (http://www.hepbunited.org/). The panel consists of the following tests to determine your hepatitis B status: 

  1. HBsAg: 
    • This tests for the hepatitis B surface antigen in someone’s blood. The surface antigen is the protein that surrounds the virus and protects it from attack by the host. A positive surface antigen test indicates that the virus is present in the body. A “positive” or “reactive” result for HBsAg indicates that someone is infected with hepatitis B and can transmit the virus to others.  
  1. HBsAb 
    • This tests for the hepatitis B surface antibody in someone’s blood. The surface antibodies are produced by the immune system and can fight off the virus by attaching to the surface antigen protein. This test can detect the presence of these antibodies. Ideally this test will be ordered quantitatively (numerically). A “positive” surface antibody test (meaning numbers reading >10 IU/mL) means that a person has protection against the hepatitis B virus (either by vaccine or from a past exposure).  
  1. HBcAb (total) 
    • This is known as the hepatitis B core antibody test. The core antibody is produced by the immune system after infection with the virus. This test indicates an existing or past infection of the hepatitis B virus.  

 

To learn more about interpreting your test results, click here. 

Important things to know about Hepatitis B Core Antibody (HBcAb) 

Someone who has markers of past infection, particularly hepatitis B core antibody, can be at risk for hepatitis B reactivation. Reactivation can be triggered by immunosuppressive therapies and cause significant life-threatening challenges. If you test HBcAb+, please talk to your doctor about what that means, and make sure you notify all future health care providers. 

How is reactivation with HBV defined? 

Reactivation is defined as the sudden increase or reappearance of HBV (hepatitis B virus) DNA. When the virus invades the cell, it forms a covalently closed circular DNA (cccDNA) in the nucleus of infected cells referred to as hepatocytes. Because cccDNA is resistant to antiviral treatments, it is never removed from the cells. Therefore, even after recovery from a past infection, the cccDNA is present and may reactivate. It is not clearly understood why this may happen, but certain factors may increase the risk for reactivation.  

To learn more about the core, click here. 

What puts one at risk for reactivation? 

  1. Virologic factors such as high baseline HBV DNA, hepatitis B envelope antigen positivity (HBeAg), and chronic hepatitis B infection that persists for more than 6 months.
    • Detectable HBV DNA levels and detectable levels of HBsAG can increase the risk for HBRr (reactivation) 
    • Testing positive for HBeAg also increases the risk for reactivation 
  2. Co-infection with other viruses such as hepatitis C or hepatitis Delta 
  3. Older age 
  4. Male sex 
  5. Cirrhosis 
  6. An underlying condition requiring immunosuppressive therapies (rheumatoid arthritis, lymphoma, or solid tumors) 
    • Certain medications can increase the likelihood of reactivation by more than 10%.  
    • B-cell depleting agents such as rituximab, ofatumumab, doxorubicin, epirubicin, moderate or high-dose corticosteroid therapy lasting more than 4 weeks. 

How to prevent reactivation of hepatitis B 

Hepatitis B reactivation is a serious condition that can lead to health complications, Reactivation is avoidable if at-risk individuals are identified through screening. Current guidelines recommend that individuals at the highest risk (those receiving B-cell depleting therapies and cytotoxic regimens) should receive antiviral therapies as prophylaxis before beginning immunosuppressive therapy. These antiviral therapies should also be continued well beyond stopping the immunosuppressive therapies. Be sure to talk to your doctor to be sure you are not at risk for reactivation.  

References 

Hepatitis b virus reactivation: Risk factors and current management strategies.

Reactivation of hepatitis B virus: A review of Clinical Guidelines.

https://aasldpubs.onlinelibrary.wiley.com/doi/10.1002/cld.883

https://www.hepb.org/prevention-and-diagnosis/diagnosis/understanding-your-test-results/

CHIPO Partner Highlight: United States Coalition for African Immigrant Health

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is co-founded and led by the Hepatitis B Foundation and is comprised of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the U.S. Over the past year, CHIPO has grown its membership to include over 50 community-based organizations and federal agencies, all of which are working to meet the common goals of raising awareness about hepatitis B among African immigrant communities, and increasing rates of screening, vaccination, and linkage to care. This month, we are excited to highlight the work of one of our newer national partners, the United States Coalition for African Immigrant Health, Inc., (USCAIH) and their Executive Director, Janet Afoakwah. Please enjoy a recent interview with Janet, as she describes her work, including successes and challenges, and the positive impacts she and USCAIH have had through their annual conferences and upcoming plans for expanding their portfolio and mission.

Could you please introduce yourself and your organization?

My name is Janet Afoakwah, and I am now the Executive Director of the United States Coalition for African Immigrant Health (USCAIH), previously known as the United States Conference on African Immigrant Health. USCAIH began as the National African Immigrant Project in 2005, supported by the U.S. Office of Minority Health, which provided a platform for national and regional conferences focused on African immigrant (AI) health. These conferences continue to be held on a yearly basis and attract a broad range of attendees, including federal agencies, academicians, researchers, policy makers, public health officials, students, community organizations, and a variety of other stakeholders. We are very excited because this year, in addition to hosting our annual conferences, we are going to be broadening the scope and focus of our work to include other services.

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

As we move forward into 2023 and beyond, USCAIH is going to be working toward achievement of some broader goals, including coalition-building; providing technical support to organizations working with AI communities; offering trainings and support in cultural sensitivity for direct-service organizations, especially those working in the areas of HIV and hepatitis, since this is such a crucial component of engaging with AI communities; organizing and expanding our website with important and relevant resources; collaborating and forming partnerships with like-minded organizations; inviting researchers to share their work with the community via a new podcast format; and providing a database where researchers working on AI health can consolidate their findings for direct use and application within communities. Data and research about African immigrants often are not disaggregated from that about African American and Black populations, so getting a clear picture of the health and health disparities impacting AI communities can often be difficult.

Is USCAIH focused in a specific geographic area or does it have more of a national reach?

Our conferences are both regional and national, and we also try to include researchers and organizations from many countries within Africa itself. The other services that we are hoping to expand will be focused on AI communities within the U.S., but all around the country.

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

We work with folks from all countries and communities. We have been able to reach some communities a bit more effectively, due to existing relationships that our staff has with community members, but our hope is to eventually reach all AI communities within the U.S.

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?

The biggest missed opportunities are in vaccination and screening for both hepatitis B and liver cancer. This gap is due to a variety of reasons, including general lack of health insurance and lack of funding for supportive programs, as well as inequities in healthcare access in general for many immigrant communities, which contribute to greater health disparities. Another large barrier is the lack of provider knowledge about the high risk of hepatitis B in AI communities.

The best ways to overcome some of these challenges are in the creation and sustainability of programs that are centered on AI communities and are culturally and linguistically competent – this is SO important. Another key element in breaking some of the barriers around cultural humility and especially provider awareness is in establishing partnerships and effective collaborations. Building awareness among trusted community and faith leaders, who in turn can pass this on to community members, is also critical. We have been able to launch and disseminate a podcast that covers health issues affecting AI communities, and we try to feature researchers and guests with lived experience of different health challenges, including hepatitis B, in order to raise awareness, dispel myths and misperceptions, and bring the severity of different health concerns into perspective. We are also working to consolidate resources on our website and to have all partners providing direct services around the country listed on there for easy navigation and connection.

Other more broad-sweeping, policy-level changes that need to happen include making hep B screening recommendations universal for all adults; and improving and centralizing linkage to care systems.

What do you think are some of the biggest barriers in raising awareness and addressing rates of hepatitis screening and linkage to care at the local, state, and federal levels? Do you think more could be done in these spheres to address this problem?

This is a big concern and one of the steps we have recently taken to address this is hosting a roundtable discussion intended to educate healthcare providers and professionals about hepatitis B and how to care for community members who might be living with HBV. Better provider education and linkage to care needs to be the order of the day. Community-based organizations should be supplementing the services that providers are offering. One big important change that can occur is for electronic medical records to include an automatic question about hepatitis B screening for all patients. All of this can be done with additional funding and support from the federal and state levels.

Do you see this issue as being connected to other concerns facing African immigrant communities?

Yes, there are a variety of health concerns that face AI communities in the U.S, many of which require similar approaches of cultural sensitivity and community and provider awareness to address. These include diabetes, heart disease, hypertension, and various forms of cancer.

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

I am passionate about hepatitis B and that is what actually got me into public health. I came into this work having previously led an HIV project at another organization. I love every aspect of my work! My favorite moments are in organizing conferences because they move so fast, have many moving parts, and are SO rewarding! These conferences are widely recognized as the premier gathering for discussing AI health – many organizations of all types are interested in presenting and sharing their work. The conference planning is tremendously collaborative and is an all-volunteer effort. Now, as Executive Director, I can see the whole picture of the conferences and the organization as a whole and am so excited to continue to be working on our old and new endeavors. Hosting the podcast has been a great experience as well, and a wonderful tool to interview a variety of people working in AI health, to raise awareness about important health topics like hepatitis B and to amplify the mission of USCAIH.

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

I just want to emphasize the importance of practicing cultural and linguistic competency, and of working in collaboration and establishing relationships with a variety of partners (including community- and faith-based organizations, health centers, and providers) and how important this is for community work. Establishing trust (which requires time and patience) and providing appropriate resources also cannot be overstated. Continuing to host conferences in order to have a space where ideas can be shared and collaborations can happen is key, and hopefully we can all work together to develop and execute a strategic plan of sorts for improving health and eliminating disparities in African immigrant communities in the U.S.

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

 Thank you!

What is the Difference Between hepatitis B and Fatty Liver Disease?

Many people have trouble understanding the relationship between chronic hepatitis B (HBV) infection and Non-Alcoholic Fatty Liver Disease (NAFLD). While research studies are ongoing and the association between hepatitis B and NAFLD is indeed complex, a chronic hepatitis B infection does not cause NAFLD. It is important to understand both diseases independently of one another before studying the correlation between the two.  

Hepatitis B and fatty liver disease both can damage the liver. This is why it is important to understand the role of the liver in maintaining overall health and well-being. The liver is an essential organ in your body and is responsible for supporting digestion and regulating nutrients. It plays a crucial role in removing toxic substances from your body.  

Worldwide, almost 300 million people are living with hepatitis B. Hepatitis B is transmitted through direct contact with infected blood, unprotected sex with an infected individual, use of contaminated medical or injection equipment, and most commonly, from an infected mother to her newborn during childbirth. A chronic (lasting longer than six months) hepatitis B infection can damage the liver and may progress to more serious conditions like cirrhosis, fibrosis, and even liver cancer. While hepatitis B is a major public health problem, it can be prevented through a safe and effective vaccine. And even though hepatitis B is a serious disease, most people live healthy and productive lives with effective management and treatment.  

NAFLD is caused by the excess accumulation of fat in the liver not related to  alcohol use. Over time, this may lead to inflammation or swelling and liver damage. There are two types of NAFLD: 1). Non-Alcoholic Fatty Liver (NAFL) or Simple Fatty Liver and 2) Non-Alcoholic Steatohepatitis (NASH). Someone who has NAFL has fat buildup in their liver. Someone who has NASH also has liver damage and liver inflammation, which can lead to cirrhosis, liver cancer, and may even result in the need for a liver transplant. Type II Diabetes and obesity puts an individual at a higher risk for contracting NAFLD. In the United States, around 20% to 40% of individuals are living with NAFLD. The good news is that NAFLD can be reversed with changes in diet, physical activity patterns, and seeing a doctor regularly.  

It is possible to have both NAFLD and hepatitis B. If you are living with both, the impact of the virus on an already inflamed and compromised liver can lead to liver damage. With excess fat stored in liver cells, the virus can easily replicate without the protection from healthy liver cells and progress to a more severe form of liver disease like cirrhosis, fibrosis, or cancer at a much faster rate.   

Like hepatitis B, NAFLD should not be taken lightly as it can lead to serious health problems. It is important to consult with your doctor to find any concerns with your liver. 

For more information, please visit the National Institute of Digestive Disease and Kidney Diseases (NIDDK) or the Fatty Liver Foundation.

 

References:

https://www.health.harvard.edu/blog/fatty-liver-disease-what-it-is-and-what-to-do-about-it-2019011015746 

https://www.medicalnewstoday.com/articles/nash-fibrosis#causes 

Can I Breastfeed While Living With Hepatitis B?

Every year, the first week of August celebrates World Breastfeeding week. World Breastfeeding week highlights the importance of breastfeeding and its benefits including nutrition, food security, child development, and the reduction of inequalities.  

Breastfeeding is a widespread practice found across cultures and borders. Considered to be the best food choice for babies, breast milk is full of essential nutrients to help babies fight off infections. It also lowers the risk of developing serious health problems like asthma, obesity, type 1 diabetes, and sudden infant death syndrome (SIDS). Breastfeeding also helps the mother bond with the child and supports the baby’s emotional health. Not only that, but mothers who breastfeed reduce their risk of developing high blood pressure, type 2 diabetes, ovarian cancer, and breast cancer. It is encouraged for mothers to breastfeed their child exclusively for six months.  

However, it is important to consider that breastfeeding may not be the best option for everyone. There are many reasons why a woman may choose not to breastfeed her child including: health issues, lack of support, lack of time, short parental leave, and poor mental health. Formula can be a great, healthy, alternative to breastfeeding when breastfeeding is not possible.  

Globally, 300 million people are living with hepatitis B, and many do not know their status. Hepatitis B is a virus that infects the liver and damages healthy tissues and cells. This makes it more difficult for your liver to do its job of making sure your body is free of toxins and breaking down food so you can use it for energy. Globally, hepatitis B is most commonly transmitted from mother to child due to the blood exchange during childbirth, but may also spread through the following routes: 

  • Sharing needles or unclean objects like razors and toothbrushes 
  • Unsafe tattoo or piercing procedures 
  • Unprotected sex 

Learn more about transmission here!  

While some health issues can prevent women from breastfeeding their baby due to the fear of passing the disease or illness to their child, this is not the case with hepatitis B. Women living with hepatitis B can safely breastfeed their baby and are encouraged to breastfeed.  

Also, to prevent mother to child transmission of hepatitis B it is important to make sure the child receives the first dose of hepatitis B vaccine called the hepatitis B birth dose within the first 24 hours of birth. An extra step towards prevention can also be taken for mothers who have hepatitis B infection, which includes giving their baby the hepatitis B birth dose and hepatitis B immune globulin (HBIG) within the first 24 hours of birth. HBIG is not always available in every country and might be difficult to get. If it is not possible to get HBIG, be sure your child gets the hepatitis B birth dose within the first 24 hours of delivery to prevent transmission. HBIG is a shot that helps to protect your baby from developing hepatitis B by teaching the body to fight off the infection. The vaccine or birth dose is safe, effective, and provides a lifetime of protection to babies, so they do not get hepatitis B in the future. The birth dose is given in 3 doses and follows the schedule below:  

  • 1st dose- given right after birth but within 24 hours 
  • 2nd dose- given in at one month of age 
  • 3rd dose- given when the baby is 6 months old 

The infant hepatitis B vaccine schedule can vary depending on where you live – you can see the schedules here. 

You can learn more about the hepatitis B vaccine here!  

It should be noted that until a baby completes their hepatitis B vaccination series, if the nipples are chapped, cracked, or bleeding, it is best to avoid breastfeeding until the nipples are completely healed. Because hepatitis B is transmitted by blood-to-blood contact, there is a small risk of transmission to unvaccinated babies if the nipples are bleeding. During this time, it can be beneficial to seek guidance from a lactation consultant and switch to a different feeding method (formula or donor human milk).  

It is safe to breastfeed if you are living with hepatitis B, you will not transmit hepatitis B to your infant. If you still feel nervous about breastfeeding your baby, formula is the best alternative to breast milk.  

References 

https://worldbreastfeedingweek.org/  

https://www.hepb.org/treatment-and-management/pregnancy-and-hbv/breastfeeding/  

https://pubmed.ncbi.nlm.nih.gov/23383145/  

https://www.cdc.gov/breastfeeding/breastfeeding-special-circumstances/maternal-or-infant-illnesses/hepatitis.html#:~:text=Is%20it%20safe%20for%20a,within%2012%20hours%20of%20birth. 

CHIPO Partner Highlight: Illinois Public Health Association

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is co-founded and led by the Hepatitis B Foundation and is composed of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the US. Over the past year, CHIPO has grown its membership to include nearly 50 community-based organizations and federal agencies, all of which are working to meet the common goal of raising awareness about hepatitis B among African immigrant communities, and increasing rates of screening, vaccination, and linkage to care. This month, we are excited to highlight the work of one of our newer partners, the Illinois Public Health Association, and their Outreach Coordinator, Monde Nyambe. Please enjoy a recent interview with Monde, as she describes her work, including successes and challenges, and the positive impacts she and IPHA have had throughout the state of Illinois.

 Could you please introduce yourself and your organization?

Monde: My name is Monde Nyambe, and I am the Outreach Coordinator for the Illinois Public Health Association, which is the oldest and largest public health association in the state of Illinois. I work specifically in the area of addressing hepatitis B among African communities around the state. IPHA has had a hep B grant for some time and the focus has actually primarily been on African communities – it was only in the past fiscal year that AAPI communities have been included in this grant as well. All of IPHA’s hepatitis B efforts do fall under the umbrella of the HIV/STI/viral hepatitis section. I started at the organization as an AmeriCorps member in November of 2020, and then was hired on to connect with African communities in the area, around the topic of hepatitis B. I am very glad to have had a role in really growing IPHA’s initiative and moving the outreach project along from the beginning – during my time here, I have built connections and made contacts with grassroots organizations and individuals, including a large and engaged group of African pastors in the area, who are vital to sharing important and valuable health information.

Could you tell me a little bit about what some of IPHA’s programs are that specifically address hepatitis?

Monde: A lot of the organization’s focus has been on educating institutions and utilizing African community members who are influential in their spheres to help raise awareness and educate community members about hepatitis B. One important undertaking has been to recruit MPH students of African descent to distribute materials and make connections, and to offer assistance with services – this has been quite effective. We have been able to utilize a partnership between a local Planned Parenthood and Merck Pharmaceuticals to meet community members where they are and to offer a sliding scale for hepatitis B vaccines. We have also been able to conduct outreach to ESL students at community colleges in the area and have been able to reach about 100 students in this way. This has been overall very successful and many of the students were quite engaged and had a lot of questions. One occasional barrier is that strict religious beliefs can sometimes impede open discussion of health issues like hepatitis B.

Which countries are primarily represented in your area’s African diaspora?

Monde: We have a huge Congolese community around Champaign and in Central Illinois, and there are many West African immigrants in the Rock Island area as well.

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

Monde: The biggest challenge is definitely awareness – people often do not realize that hepatitis B is a problem in their communities. Another challenge is finding individuals who are willing and able to do targeted health communication outreach (like the group of pastors mentioned previously). We have been able to do brief interviews with Facebook influencers, which have been helpful, and to build connections with passionate community members. One big lesson I have learned is to not be afraid to reach out to people that you may know personally and they in turn can reach out to their networks – personal relationships work well for this type of outreach!

Another big challenge in hepatitis B and health outreach to African communities is finding materials in the appropriate languages and dialects. Even after all my time in this country, I have not been able to find materials of any kind that are printed in my native language. Many times, materials are printed in standard languages like French, Swahili, and Amharic, but there are different versions of even those languages that many community members may not readily understand. Also, not everyone knows the official languages of different countries. If and when resources are created in a greater number of languages, it is important to pilot-test them in the communities to ensure that they are accurate and meaningful in the language as it is used in daily life.

Additionally, many people who are newly arrived to this country don’t know much about how to navigate the healthcare system here and don’t have health insurance. If they do have health insurance, they may not know that hepatitis B testing and vaccination are covered under their plan. One idea that might be helpful would be to have an easily accessible list of African healthcare providers or community health workers who are interested in serving their own communities. This might help people to feel more comfortable and that their healthcare provider relates to their personal experiences.

What do you think are some of the biggest barriers in raising awareness and addressing rates of hepatitis screening and linkage to care at the local, state, and federal levels? Do you think more could be done in these spheres to address this problem?

Monde: I think again that awareness continues to be the biggest issue here and that continued engagement with leaders in this area is important and crucial for advocacy. People need to recognize the consequences of not testing for, preventing, and treating hepatitis B. Leaders need to also continue to hear about disparities that exist in healthcare, such as the high rates of hepatitis B in African communities around the US. Encouraging more community members to be involved in grassroots advocacy can also go a long way toward policy formulation, increased awareness, and, importantly, more funding for efforts to combat hepatitis B. It would be great if some of the same energy and efforts that have been used in the HIV space over the past several decades could be used in the hep B space as well.

Do you see this issue as being connected to other concerns facing African immigrant communities?

Monde: Yes, definitely! High rates of hepatitis B are connected to economic status, English language proficiency, immigration status – even things like having knowledge of and access to public transportation to get to appointments on time is part of the issue as well. Understanding of cultural customs that may be confusing and pose challenges for those who are new to this country, like leaving a voicemail and navigating the phone systems of many doctor’s offices and clinics, should also be considered when ensuring that healthcare and health information are truly culturally and linguistically appropriate and actually accessible for all communities. The social determinants of health are important and must be considered in making decisions and designing everything from communications campaigns to policies.

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

Monde: I started out as a social worker and when I came to the US, became a nursing assistant. I worked in a nursing home, and, while in school, an advisor recommended a public health class to me and this changed everything! I started outreach work and really liked public health – I then became an AmeriCorps member and started my journey at IPHA! I have most enjoyed interacting with people from many different walks of life, answering questions, and offering guidance and clarity around hepatitis B. Seeing all different sides of the issue has been challenging and rewarding at the same time.

Thank you so much for taking the time to share your thoughts on your work and the role of IPHA in raising awareness and conducting outreach about hepatitis B to African communities across the state of Illinois. We appreciate all that you do!

Monde: Thank you!

Elevate Your Voice

Almost 300 million people worldwide live with chronic hepatitis B, but most of their stories remain untold. Often this is due to the negative stigma surrounding the virus, fear of discrimination, lack of community awareness or understanding of the disease and lack of support for those who wish to speak out publicly about hepatitis B.

No one knows hepatitis B better than the people living with the virus. Elevating the voice of people who live with hepatitis B is so important to bring awareness to hepatitis, help fight discrimination, and keeping up the momentum to find a cure for hepatitis B. Storytelling is an important to way to talk about an individual’s journeys with hepatitis B.

Since 2017, the Hepatitis B Foundation has partnered with StoryCenter to host six #justB digital storytelling workshops for over 40 participants from more than 20 U.S. states and Canadian provinces. The #justB campaign empowers people with lived experience to share their stories with the goals of increasing awareness and advocacy around hepatitis B, decreasing stigma and discrimination, and promoting testing, vaccination and linkage to care and treatment.

The latest #justB workshop was held in Berkeley, Calif., from March 18-20, 2022. It brought together five highly motivated adults living with hepatitis B who wanted to learn how to share their stories to educate communities and inspire action.

We will be highlighting these patient advocates and their stories over the next few months. Here are overviews of Adama and Chelle’s stories:

Adama, who was born in West Africa and immigrated to the U.S. decades ago, recalls when he tested positive for hepatitis B and how he soon realized that the illness his mother suffered from must have also been hepatitis B. “As I began to learn about the virus, I realized, ‘Oh, I think that’s what killed my mom.” Having lost his mother to the disease, Adama knows the importance of testing, early detection and monitoring for those who are living with hepatitis B. “I take treatment, I learned how to take care of myself… But what about the people around me, in my community, who won’t even get tested? Everyone talks about HIV, about how to protect ourselves, but this hepatitis virus is too much ignored.”

Chelle, a Utah resident, speaks candidly in her story about the stigma she encountered after being diagnosed with hepatitis B in the 1980s. “I felt so isolated. I couldn’t even talk to my family… Sometimes I thought about all the stomach problems I had complained of as a kid. I had been adopted from the Philippines in the 1970s. I was tested for this and that, but not for hepatitis B. Testing for the virus wasn’t widespread at that time. I was called a hypochondriac when the doctors couldn’t figure out what was wrong.” Chelle is grateful that things have improved since then and that she was able to pursue a career in the medical field. But her experience still motivates her to continue speaking out and fighting against hepatitis B related stigma that persists around the world.

To watch the new #justB stories by Adama, ChelleWendyDHE and FK, and to access the complete #justB video library with more information, please visit: www.hepb.org/justb.

How to Elevate Your Voice

Are you interested in sharing your journey with hepatitis B? The Hepatitis B Foundation has the B the Voice Story Bank which provides an online platform for people living with hepatitis B, their families, community health workers and health care providers to share their firsthand knowledge and experiences with a global audience. You can submit your stories using an online form, along with any photos and personal details you wish to share. Submissions are confidential and can be made without disclosing a person’s full identity.

We encourage you to share stories about your diagnosis, living with hepatitis B, access to care and treatment, stigma and discrimination, education and advocacy, support and caregiving, services and programs and other related topics to not only help raise awareness for hepatitis B, eliminate stigma and discrimination, but to also inspire others to be brave in their diagnosis.

How Can Providers Elevate Individual’s Voices?

It is important for providers to also help elevate peoples’ who are living with hepatitis B voices. Healthcare institutions, organizations, and departments must develop relationships with people living with hepatitis B to establish trust and listen to what they want to see be done in the hepatitis B world. Their opinions are critical to develop effective programming around hepatitis B education, vaccination, testing, and eventually elimination. 

May Hepatitis Awareness Month #justBLoud

Hepatitis Awareness Month #JustBLoud blog

This May, for Hepatitis Awareness Month, we are asking you to #justBLoud for hepatitis B. Currently up to 2.4 million living in the U.S. have chronic hepatitis B, yet no one seems to be talking about it. The average American is unaware about hepatitis B and why our country needs to put more energy into prevention and finding a cure. The louder we are, the more we can help people get screened, vaccinated or treated for this serious disease.

You can start getting loud the Hepatitis Awareness Month by making a short video explaining why it’s important for you to #justBLoud about hepatitis B. It can be a personal story or you can take the text right from the below bulleted points.  Be sure make the post public and tag #justBLoud and tag HepBFoundation. You can even make quick Instagram and Facebook stories using the #justBLoud stickers we created, just search “justbloud” in the stickers menu. If you’re camera shy, write down your reason for being loud and share a photo of it online.

Talking points for your message may include:

  • #JustBLoud about prevention: Hepatitis B is easily prevented with a safe vaccine.
  • #JustBLoud about transmission: Hepatitis B is transmitted through direct contact with infected blood, not casual contact. Hug someone with hepatitis B today.
  • #JustBLoud about screening: In the U.S. only 25% of people with hepatitis B are aware that they have hepatitis B. Get screened today.
  • #JustBLoud about treatment: Only 50% of people with diagnosed chronic hepatitis B in the U.S. receive appropriate medical care.
  • #JustBLoud about giving: Donating to the Hepatitis B Foundation makes a big impact for people living with hepatitis B. It affects advocacy efforts as well as research to find a cure!

Other easy ways to just B Loud this Hepatitis Awareness Month:

  • Share our social media posts this month to help spread the word. Make sure to follow us on Facebook, Instagram, Twitter, LinkedIn, and YouTube.
  • Use one of these as your zoom background to get the conversation started: justBLoud zoom background justBLoud zoom background with microphone
  • Join our Action Center for Hep B United here.

Whatever you do this month, don’t be quiet! We need to spread the word about hepatitis B to help people living with hepatitis B whether they know it or not and those who are unvaccinated. Thank you in advance for participating.


Please note: If you don’t want to participate because you fear discrimination please contact us privately here.

CHIPO Partner Highlight: Great Lakes Peace Centre

 The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is co-founded and led by the Hepatitis B Foundation, comprised of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the US. Recently, CHIPO has started to expand its reach to communities in Africa and has welcomed new partners from the Continent. This month, in honor of Minority Health Month, we highlight a partnership between CHIPO and Great Lakes Peace Centre (GLPC) in Kasese, Uganda. CHIPO has recently provided GLPC with educational resources that are tailored for African communities, which GLPC is translating into local dialects and will use in a strategy to raise awareness and provide education about hepatitis B, primarily to rural women and youth in Kasese District. A recent interview with Bwambale Arafat, Head of Health and Policy Officer at GLPC, sheds light on some of the significant barriers that impede hepatitis B screening, prevention, and care in Uganda (and much of the African continent) and showcases some of the extraordinary work of GLPC on a host of issues, of which viral hepatitis is just one.

 CHIPO: Can you share a little bit about yourself? What is your connection to hepatitis?

Arafat: I work with the Great Lakes Peace Centre, which is a grassroots, youth-led organization, here in Kasese District, a rural area in Rwenzori region, western Uganda (near the border of the Democratic Republic of Congo, about 400 kilometers from the capital city of Kampala). Most of our work with hepatitis B is focused on raising awareness and providing education about the virus to women and youth in the area, who are the most important people to reach. We also engage in a lot of advocacy initiatives, as well as efforts to lower stigma and discrimination.

My personal connection to hepatitis B is the diagnosis of my uncle with hepatitis B and liver cancer and his death shortly thereafter. There was widespread misconception that he had been bewitched and poisoned by relatives. I have been working to try to dispel some of these myths and provide accurate information ever since. In 2021, I was honored as a World Hepatitis Alliance champion for hepatitis outreach work during COVID-19. I and GLPC are deeply committed to the cause of hepatitis B elimination by the year 2030.

CHIPO: Congratulations on the well-deserved honor! Can you share a bit about the work and goals of your organization?

Arafat: Due to its proximity to the Democratic Republic of Congo, Kasese feels the effects of war and conflict acutely, and the area is quite fragile. Peace and Conflict Resolution is the first of three priority areas for GLPC and is driven forward by the efforts and demographic dividends of young people. Health Promotion and Public Policy is the second priority area, which encompasses awareness and education about hepatitis, HIV/AIDS, malaria, and tuberculosis prevention, screening, and treatment, as well as nutrition assessments, counseling, and support, especially for mothers of children under five years of age. Water, Sanitation, and Hygiene is another topic of top concern, and initiatives in this sector included a hand-washing campaign for COVID-19. The last focus area under the Health Promotion umbrella is adolescent sexual and reproductive health, and especially promotion of education equity for menstruating young women and ending of stigma and discrimination around this, thus keeping young women in school for longer. Social empowerment happens through education, and people can donate to keep girls in school with financial support. The third organizational priority is to focus on climate change – GLPC distributes solar panels through public and private partnerships, as a great step toward sustainability and protecting the planet we share.

 CHIPO: What are some of the biggest barriers to hepatitis screening, prevention, and care in your community?

Arafat: As I mentioned above, the widespread presence of myths and misconceptions about hepatitis B, especially about transmission, is one of the biggest culprits in perpetuating the stigma and discrimination that still dominate the hepatitis B conversation and presents one of the biggest challenges to increasing screening and vaccination. Some ways that we are working to dispel some of these misconceptions are through our social media platforms, which all have huge followings by younger people. However, attitudes are very slow to change, and this is why the involvement of religious and community leaders in spreading accurate information and shifting the narrative around viral hepatitis is so important, and why personal testimonials and connections with people who are living with hepatitis B hold such power.

Other challenges to screening, prevention, management, and treatment of hepatitis B in Kasese include the enormous out-of-pocket costs of diagnosis and testing; the persistent lack of awareness among the general population – primarily lack of information, education, and communication; the lack of logistics and supplies for things like test kits and cold chain storage for vaccines; and the long distances and mountainous topography that make access to health facilities in larger cities difficult. Additionally, funding and resources from the government and other stakeholders remain inadequate, making it difficult to ensure that services will be available when they are needed. The Minister of Health and government of Uganda have created infrastructure to help with vaccination (they have provided 1 million USD for this reason), have recommended universal adult vaccination, and have also waived fees for viral load investigation. However, things like ultrasound scans, complete blood count panels, and other tests to determine when someone would need treatment for hepatitis are not subsidized. The government could also do a great deal more in terms of increasing awareness, investing money into management and care, prioritizing the birth dose of the vaccine to prevent mother-to-child transmission of hepatitis B, and addressing the stigma and discrimination so many living with hepatitis B routinely face.

Many infants also continue to be delivered by traditional birth attendants, who are not trained in preventing mother-to-child transmission of hepatitis B, and knowledge among community health workers in general is very low. There is also inadequate data and surveillance of the disease, and no records of screening, vaccination, or care are kept in the Health Management and Information System. There is a lack of clear guidelines around testing for the medical community and a lack of materials that can help to raise awareness and combat stigma.

We also really need to integrate hepatitis services into those that exist for HIV/AIDS. Machines that are used to test for HIV/AIDS can be recalibrated to also test for hepatitis. Electronic Health Records can be upgraded to include hepatitis B status. As awareness grows, patients can also hold health workers accountable for hepatitis testing, as they do now for HIV and syphilis. This conversation needs to start with the people themselves.

 CHIPO: How are you planning to use CHIPO’s materials and resources over the next year?

Arafat: We have a saying in Kasese: “When you talk in a foreign language, you talk to people’s heads. When you speak in their language, you speak to their hearts.” Our first priority is to translate CHIPO’s flip charts, takeaway cards, and guides for health educators into our local dialects of Lhukonzo and Runyakitara, in order to reach as many community members and stakeholders as possible. We will host four community educational events using the materials and in these events, will focus on hepatitis B overview, causes and prevention, common myths and misconceptions, and unmet needs in this area. These sessions will be moderated by NoHep Champions and Hepatitis Ambassadors, so that the community can hear from people with direct experiences of the disease and their voices can be amplified.

Additionally, we will host NoHep Champion Table Talks, which are informal discussions that will consist of young people living with HBV and pregnant women, who will share stories and build community. These talks will touch upon how people are doing physically, as well as with handling stigma, and will identify needed services, insights which can help to determine future programming and practices. These talks will also emphasize that no one is alone, and that hepatitis B is not a death sentence, but that people with HBV can live long and healthy lives. We will also convene community barazas (gatherings) with local leaders, including social workers, health workers, village health teams, hepatitis ambassadors, local council, and cultural, community, and religious leaders to conduct trainings on delivery of the educational materials. These will provide an opportunity to educate and invite open discussion. We will also hold continuing education courses on hepatitis B for healthcare professionals at health facilities, including community health workers, village health teams, and para-social workers. Finally, we are planning to compose a radio jingle related to hepatitis B that will be heard around the district.

Only 1 in 10 people in Kasese know their hepatitis B status. These materials can go a long way in changing that.

CHIPO: Thank you so much for your valuable insights and for all of the work you are doing! Do you have any final thoughts or messages that you would like to share?

Arafat: I would just like to mention our No Hep Mamas campaign, which we are also implementing for the prevention of mother-to-child transmission of hepatitis B. We are working to bring this campaign to more health facilities, and share this information in prenatal care settings, as stopping the cycle of transmission is truly the best way to eliminate hepatitis B.

CHIPO: Thank you so much again for your time today, Arafat, and we look forward to more inspiring work from you in the future!

Arafat: Thank you very much!

10 Things You Need to Know if You’re Living with Hepatitis B in 2022 

1. Get monitored every 6 months  

All people with chronic hepatitis B infection, including children and adults, should be monitored regularly since they are at increased risk for developing cirrhosis, liver failure, or liver cancer. During these check-up visits, your provider will monitor your health through a physical exam, blood tests and imaging studies (such as an ultrasound, FibroScan [Transient Elastography] or CT scan). The goal of these check-ups is to make sure that you are staying healthy and to detect any liver problems as early as possible. 

2. Take your antiviral daily  

Medication adherence can be hard, especially if you have to take a pill every day! It is important you take your medication every day.  

3. Ask your doctor to be screened for liver cancer  

Did you know the most common risk factor for liver cancer is chronic infection with the hepatitis B virus? Individuals chronically infected with hepatitis B have a 25% to 40% lifetime risk of developing liver cancer. It is important to ask your doctor to be screened for liver cancer every year!  

4. Ask your doctor to be screened for hepatitis D  

You can find out if you have hepatitis D through a simple blood test. Hepatitis delta, also known as hepatitis D or HDV, is a liver infection caused by the hepatitis delta virus that results in the most severe form of viral hepatitis known to humans. Only those already infected with hepatitis B can acquire hepatitis delta, as it is dependent on the hepatitis B virus to replicate.

5. If someone promises a new cure or treatment that sounds too good to be true….it is 

In the search to eliminate hepatitis B, we may be tempted to try a supplement that promises to cure us. But first, do your homework and practice precautions. To check out an herbal supplement, visit the National Center for Complementary and Integrative Health’s website to see what scientific evidence exists for a supplement and talk to your doctor. There is no magic bullet that will cure hepatitis B. Expert researchers hope to find one soon, but for now be patient and stay skeptical of “cures”. If you want to safeguard your health, eat healthy foods and avoid alcohol and cigarettes, and talk to your doctor about treatment with an FDA-approved antiviral medication. 

6. Stay informed about clinical trials and drug developments 

There is lots happening on the research front. To find out what drugs are in the development pipeline, visit the Hepatitis B Foundation’s Drug Watch page for the latest news. You can also find out if you qualify for a clinical trial. Expensive blood work, treatment medications, and doctor’s visits are usually free-of-charge for those accepted into a study. The Foundation features a Clinical Trial Finder that can help you find clinical trials in U.S. and around the world at its Clinical Trials page. You could become part of the cure. 

7. Fight hepatitis B-related discrimination 

Hepatitis B should never be a barrier to the education or job you want. Sadly, ignorance and stigma remain in the U.S. and abroad. It depends on us, our friends, and our family, to stand up and fight for our civil rights. The Hepatitis B Foundation has made much progress, but discrimination is still active and affecting people’s quality of life. If we don’t advocate for ourselves, who will? The Hepatitis B Foundation is working to document discrimination related to hepatitis B through its Hepatitis B Discrimination Registry. If you experienced hepatitis B discrimination, please report it through the Registry Survey 

8. Practice safe sex and harm reduction strategies 

Today, in some areas of the U.S., hepatitis B is increasing—even though a safe and effective vaccine exists. Unfortunately, not everyone is immunized, and the infection is still being transmitted sexually. Amid America’s opioid epidemic, it’s also spreading when syringes are re-used and shared. Make sure your friends and family members know how to prevent sexually transmitted infections (even if those conversations are challenging, their lives may depend on it), encourage them to get vaccinated for hepatitis B, and support needle exchange programs in your region and state. Countless studies show that when needle exchange programs are available, HIV, hepatitis B and C rates decline! It saves lives and healthcare dollars! 

9. Pregnant? Ask your doctor about the vaccine  

Infants born to women with hepatitis B must receive accurate doses of hepatitis B vaccine and hepatitis B immune globulin (if recommended and available) to ensure complete protection. In order to protect these infants, medications should be given immediately after birth in the delivery room or within the first 12-24 hours of life. Some women also benefit from treatment during their third trimester to prevent mother-to-child transmission, so talk to your doctor. 

10. Join a support group 

There are several good Internet Support Group Listservs dedicated to hepatitis B. These Lists provide emotional support and practical help for those living with hepatitis B. There are also organizations that can refer individuals to traditional (“land-based”) support groups.   

Hep B Community 

HepBCommunity.org is a global peer-led, volunteer-driven forum to support those living with and affected by hepatitis B supported by Westmead Hospital Foundation (AU) and the Hepatitis B Foundation and . They are dedicated to connecting people affected by hepatitis B with each other and with verified experts in the field who provide trustworthy and accurate advice. 

HBV Adoption Support List 

Adoptive or biological parents of children living with hepatitis B are invited to participate. This is a restricted list to protect the privacy of parents and children and requires pre-approval by the list owners to join. Update: This group has moved to Facebook and is currently set to private. Please email info@hepb.org for more information.  

PKIDs Email Support List 

Adoptive and biological parents of children living with chronic hepatitis B or C, and HIV are invited to participate. This is an unsupervised list sponsored by the national non-profit organization PKIDs. 

Hep B Online Support Group 

San Francisco Hep B Free – Bay Area hosts this group for those living with acute or chronic hepatitis B, and their family and friends. The site is moderated by the organization, and is currently only available for those living in the United States. 

Author: Evangeline Wang 

Contact Information: info@hepb.org 

Happy Human Rights Day: Hepatitis B and Human Rights

Human Rights and Hepatitis B  

Every year on December 10th, we celebrate Human Rights Day! This year’s theme is “Equality – Reducing inequalities, advancing human rights.” This theme emphasizes equality, inclusion, and non-discrimination to further the Sustainable Development Goals by 2030.   

So how does this year’s theme relate to hepatitis B? 

Hepatitis B is the most common liver infection in the world. Almost 300 million people worldwide are living with chronic hepatitis B, yet there are a lot of misconceptions and myths surrounding the disease which perpetuates stigma, discrimination, inequality, and exclusion.  

More commonly, misconceptions surround the transmission of hepatitis B. Sometimes people think that hepatitis B can be spread through casual contact, through sharing food, through dirty environments – others feel that people with hepatitis B must have done something “bad” to get the virus. These perceptions can be damaging to an individual who is living with hepatitis B because it can create not only social stigma but self-stigma.  

A person living with hepatitis B might feel like they cannot disclose their status or live freely because of the way people or institutions will treat them. This fear of exclusivity also might create hesitation for people to get tested which could potentially delay treatment for people who might need it to prevent hepatitis B from progressing to something more serious like cirrhosis, fibrosis, or liver cancer.  

In some cultures, hepatitis B is viewed as a punishment from a supernatural force. People living with hepatitis B who believe this might feel a burden and shame and will not share their status. This belief also perpetuates hesitation for people to access testing and treatment. 

However, hepatitis B is NOT transmitted casually, no one is to blame for hepatitis B, and people who have hepatitis B deserve the same opportunities to live fulfilling lives – at work, at home, and in the community.  

Are You Feeling Isolated? 

If you are feeling isolated from your community, family, other individuals, etc., there are support groups you can join! Hep B Community is a global online support group dedicated to connecting people affected by hepatitis B with one another and with verified experts in the field, who provide trustworthy and accurate advice. 

On this day let’s celebrate Human Rights Day and take action to improve equality, inclusivity, and non-discrimination. Here are some resources: 

Did you know the Hepatitis B Foundation has a Discrimination Registry? 

The Hepatitis B Foundation is working to document discrimination related to hepatitis B through its Hepatitis B Discrimination Registry. If you experienced hepatitis B discrimination, you can take action and report it through the Registry Survey 

The Hepatitis B Foundation also has a page dedicated for people experiencing discrimination in the United States. Check out what to do if you are experiencing discrimination in the workplace, military, and schools and institutions 

If you are experiencing discrimination and would like some advice email discrimination@hepb.org  

 

Author: Evangeline Wang

Questions: info@hepb.org