We are so excited to announce the launch of our podcast: B Heppy! This podcast is part of our 300 Million Reasons campaign, a movement to improve awareness about hepatitis B and liver cancer worldwide, to promote engagement of key stakeholders, and to empower people impacted by hepatitis B to become vocal advocates. There are almost 300 million people around the world living with chronic hepatitis B infection, and we want to make sure each and every voice is heard.
B Heppy addresses various topics about hepatitis B to help inform providers, persons living with hepatitis B and the general public about hepatitis B. The first episode covers the covid-19 vaccine in the context of individuals living with hepatitis B. The Foundation interviewed Robert Gish M.D., Hepatitis B Foundation Medical Director to answer questions like what is an mRNA vaccine, the side effects of the COVID-19 vaccine, and if it is safe for people living with hepatitis B to receive the COVID-19 vaccine.
Our next episode will discuss the history of the Hepatitis B Foundation as well as giving an overview of hepatitis B. We will be joined with co-founders, Joan Block, RN, BSN and Jan Witte and Senior Vice President Chari Cohen, DrPH, MPH.
We hope this podcast reminds you that you are not alone in your diagnosis! Together, we can foster a collaborative and connected global community united around all things hepatitis B.
The Hepatitis B Foundation is very excited to announce the launch of our new campaign: #MoreThanB. The goal of the campaign is to celebrate the lives of those living with or impacted by hepatitis B worldwide. Hepatitis B might be a big part of our lives, but we want to highlight the other aspects of our lives – our hobbies and dreams, the way we spend our time, the things that make us who we are, outside of hepatitis B.
The Hepatitis B Foundation has been a long-time advocate and supporter of individuals living with hepatitis B who express that they are more than their diagnosis. In 2008, The Foundation supported 18-year old John Ellis throughout his “Believe in the Cure” cycling tour from Pensacola to Philadelphia to raise awareness about hepatitis B. When John was diagnosed with hepatitis B as a teenager, he wanted to be “bigger” than his diagnosis, so he undertook this physical challenge, which raised $50,000 for The Foundation’s mission to find a cure and improve the lives of those affected. John helped us all learn to express how we are bigger than a hepatitis B diagnosis.
We want you to share who you are beyond hepatitis B. Share a few sentences about your life, hobbies, work, family, friends, and upload a photo. We will turn your submissions into social media posts to share on the Foundation’s social media pages. United States respondents, please submit your profile by April 2nd to be featured during Hepatitis Awareness Month in May and international respondents, please submit by June 30th to be featured in July for World Hepatitis Day.
Take a look at the examples below:
“I am constantly learning and finding new adventures. I love to read, attend the theatre (when safe 😊), spend time with my family and dog, and find new ways to incorporate sustainability into my lifestyle. You’re most likely to find me scrolling on social media, or playing a card game with friends!”
“I am a wife, dog mom, marathoner and avid traveler. I am passionate about food, hiking, being in nature, exploring, public health and eliminating hepatitis B.”
Are you a member of the African diaspora in the United States? Do you work for an organization that serves these communities? We would love for you to join CHIPO – the Coalition Against Hepatitis for People of African Origin! CHIPO is a national community coalition, co-founded and led by the Hepatitis B Foundation. Our members include a variety of individuals and organizations from all over the country, who are interested in and focused on addressing the high rates of hepatitis B among African communities in the US., which are disproportionately affected by hepatitis B and liver cancer. In some parts of the country, rates of chronic hepatitis B infection in African communities are estimated to range between 5 and 15% of people.
The purpose of CHIPO is to provide a space for an open exchange of ideas, best practices, and information about how to dismantle some of the many barriers that stand in the way of preventing, diagnosing, and treating chronic hepatitis B infection, and preventing liver cancer, in African immigrant communities. These barriers include a lack of disease awareness, high rates of stigma, limited access to healthcare and services, and the silent nature of the disease, which often does not present any symptoms until significant liver damage has occurred – a process which could take years or even decades. As a result, most African community members who have hepatitis B DO NOT KNOW that they are infected. This puts them at much greater risk for premature death from cirrhosis or liver cancer.
CHIPO, meaning “gift” in the Shona language, aims to disseminate accurate information about hepatitis B transmission, prevention, and treatment among community members, healthcare providers, and organizational leaders, and to improve the national capacity to raise hepatitis B awareness, testing, vaccination, and linkage to care among highly affected African communities. CHIPO also works to ensure that African immigrant communities are represented in HBV discussions and programs regionally and nationally. This is achieved through advocacy and the development of national and local partnerships. We currently have over 35 coalition partners around the U.S., dedicated to addressing viral hepatitis in African communities.
The activities of CHIPO are many and diverse. They include bimonthly virtual meetings, which often center around a presentation by a coalition member about measures or interventions that have been undertaken or research that has been done to achieve one of CHIPO’s objectives – namely improving awareness about and access to hepatitis B information, screening, vaccination, and linkage to follow-up care. Other activities include educational community events and presentations; supporting the design and implementation of initiatives to help accomplish CHIPO’s goals, such as the CDC Know Hepatitis B campaign (discussed below) and a recent grant from Bristol Myers Squibb to raise awareness about liver cancer and understanding about the link between hepatitis B and liver cancer in African immigrant communities; and promoting the work of coalition members locally and nationwide.
To read more about CHIPO, including previous blog posts, articles, and meeting minutes, and to access a full list of our members and the work they are doing around the country, visit our website.
Does this work sound interesting to you? Would you like to work with us to achieve lower rates of hepatitis B and liver cancer in African immigrant communities through increasing awareness, screening, vaccination, and linkage to care? Join us! Anyone is welcome to join CHIPO – contact the coordinator to get involved. We hope to see you on our next call!
The Hepatitis B Foundation is excited to launch a new movement called 300 Million Reasons, named for the almost 300 million people worldwide who are living with hepatitis B. The goal of this movement is to improve awareness about hepatitis B and liver cancer worldwide, to promote engagement of key stakeholders, and to empower people impacted by hepatitis B across the globe to become vocal advocates. We want to amplify the voices and stories of the millions of people directly affected by this disease, in order to make sure that hepatitis B is granted the funding, attention, and serious consideration that it deserves. The 300 Million Reasons movement will be officially launched in July of 2021, in time for World Hepatitis Day, but we wanted to begin sharing resources and information now.
This movement is divided into four branches: B Informed, B Connected, B the Voice, and B the Change. Each of these arms is described below.
Hepatitis B can be prevented, treated, and managed. The B Informed branch of the 300 Million Reasons movement involves raising awareness about hepatitis B and liver cancer, providing accurate information, dispelling myths and misconceptions, decreasing stigma and discrimination, and providing simple hepatitis B educational tools, which will focus on transmission, prevention, liver cancer screening, and living with chronic hepatitis B. We have created a free and downloadable social media toolkit that can help spread the word about statistics, vaccines, testing, monitoring and care, symptoms, blood tests, acute vs. chronic hepatitis B and more. Check it out today!
You are not alone! The B Connected arm of 300 Million Reasons works to increase access to clinical trials, expand global connections to support people living with hepatitis B and their loved ones around the world, establish international peer mentoring programs, and create a social network and further community engagement opportunities for people impacted by hepatitis B. This branch of the movement will be modeled after current coalition work that has been done with Hep B United and the Coalition Against Hepatitis in People of African Origin.
B the Voice
Your voice matters! The B the Voice component of the 300 Million Reasons movement is focused primarily on international storytelling and elevating the voices of those living with and affected by hepatitis B around the world. Stories of discrimination, stigma, screening, diagnosis, treatment, supporting community and family members, personal and larger-scale successes, setbacks and victories – all are important to share and learn about in order to raise awareness, inspire change, and eventually find a cure. Do you have a story to share? We would love to read it! Share your story today using this link.
B the Change
Stand up, speak out! B the Change aims to increase activism among those living with hepatitis B and their loved ones and to use this as a tool to advance the cause of increasing knowledge about and support for hepatitis B among legislators and policy-makers. It will include national and international community ambassadors, strong relationships with the World Hepatitis Alliance and other key partners, outreach to people living with hepatitis B who have not had prior involvement in this effort, and advocacy training and opportunities. With knowledge can come action – let’s build a strong communication network to spread the word and B the Change to create a world that is Hep B-free! Become a hep B advocate today by joining our Action Center.
The 300 Million Reasons movement will continue to grow and expand over the coming months and years, as more materials and resources are developed and disseminated. We hope you will continue to stay tuned on our website for updates and that you will join us in taking steps toward shining a light upon, and eventually eliminating, hepatitis B! Join the movement today!
Hep B United is very pleased to report that the eighth annual (and first virtual) Hep B United Summit was a great success! With over 200 attendees from around the US, the summit brought together partners – both new and familiar – to discuss and collaborate on the successes and challenges of the past year, and strategies to move forward toward the elimination of hepatitis B.
The theme of this year’s summit was “Standing Up for Hepatitis B: Creative Collaborations to Amplify Awareness, Access, and Equity.” The event included many exciting sessions on topics such as progress toward a hepatitis B cure; strategies for providing hepatitis B services in the time of COVID-19; federal updates on hepatitis B; methods for incorporating hepatitis B into viral hepatitis elimination planning efforts at state and local levels; the path to universal adult hepatitis B vaccination; expansion of hepatitis B outreach in non-traditional settings, such as pharmacies, harm reduction centers, and correctional facilities; the pandemic of structural racism and how to bridge gaps in healthcare; and elevating the patient voice to move elimination efforts forward. The event included a poster session with over 20 submissions from presenters around the country, ranging from medical students to organizational partners, and covering a diverse and comprehensive array of topics related to hepatitis B.
The virtual platform offered a dynamic and engaging experience, with opportunities for networking, game participation, social media involvement, and learning. The Summit concluded with an award ceremony in which nine Hepatitis B Champions and a Federal Champion were honored for their efforts and dedication to hepatitis B advocacy, awareness, prevention, and elimination efforts over the past year.
As in previous years, the Summit provided an opportunity for colleagues to gather and to exchange innovative and creative ideas that will help to advance hepatitis B elimination and elevate hepatitis B as an issue deserving of widespread national attention. Recordings of the Summit are available on Hep B United’s YouTube channel – check them out today!
On Monday September 21st, a virtual celebration was held in honor of the sixth anniversary of National African Immigrant and Refugee HIV and Hepatitis Awareness (NAIRHHA) Day. This day, which itself is commemorated on September 9th, was created to build awareness and dismantle stigma around HIV and viral hepatitis in African immigrant and refugee communities. It takes place in September because this is the month that has been designated as National African Immigrant Month (NAIM) in the United States to celebrate the diverse and remarkable contributions African immigrants have made to enrich the United States, in spheres ranging from sports to writing to politics.
The virtual celebration that occurred last Monday included a discussion of the history of NAIRHHA Day and how it came to exist in its present form, a conversation with a hepatitis B advocate who is living with the disease, discourse about the importance of NAIRHHA Day on the national level and implications for making it a federally recognized day, and trivia questions about HIV and hepatitis B.
History of NAIRHHA Day: The Journey from 2014 to Present
Moderator: Chioma Nnaji, MPH, MEd, Program Director, Multicultural AIDS Coalition
Panelists: Augustus Woyah, Program Officer for Minority AIDS Initiative, Maryland Department of Health
Amanda Lugg, Director of Advocacy and LGBTQ Programming, African Services Committee
The idea for NAIRHHA Day was first conceived in 2006 at a convening of the Ethiopian Community Development Corporation in Washington, DC, at a session sponsored by Office of Minority Health about HIV in African immigrant communities. Conferences started to occur, primarily in the Northeast, although there was also interest in Atlanta and Seattle. It seemed that an opportunity had finally become available for advocates, researchers, and providers to all come together and focus on data collection, community mobilization, and policy work around HIV and viral hepatitis in African immigrant communities. The African National HIV/AIDS Alliance was established in 2010 and awareness days started in 2012 (Augustus played a large role in this). In 2014, Chioma Nnaji became connected to Sylvie Bello, the Executive Director of the Cameroonian Association in Washington, DC, and they, along with Amanda and Augustus, worked to get NAIRHHA Day off the ground. Chioma has largely spearheaded efforts to have NAIRHHA Day recognized nationally.
In terms of some of the challenges that have and continue to exist around NAIRHHA Day, obtaining community leadership and organizational buy-in, as well as national attention, are at the forefront. Social media and other digital platforms have been widely used in order to amplify the cause and try to obtain federal recognition. Additionally, maintaining relationships with government agencies has been quite difficult and has become a clash of visions of sorts. There is a strong belief that NAIRHHA Day should be a community-driven effort, but government agencies often have their own priorities, which can be distinct from those of the community and grassroots organizers. This is not to discount the government and organizational partners that are still involved, however, including NASTAD, the Hepatitis B Foundation, CHIPO, CHIPO-NYC, and Africans for Improved Access at the Multicultural AIDS Coalition. Another challenge has been reinforcing the distinction between African immigrant and African American communities and not treating the Black community as a monolith. Drawing this distinction in both data and policy remains difficult, thus often rendering African immigrant communities invisible.
When pondering what areas could use improvement going forward, a number of different items were considered. These included incorporating COVID-19 into the conversation, along with viral hepatitis and HIV; addressing social and environmental determinants of health that lead to the over-prevalence of both infectious and non-communicable diseases in minority, and particularly African immigrant communities; adhering to the primary goal of community mobilization and including advocates and researchers to influence policy that provides linguistically and culturally appropriate services that address the most pressing issue of stigma; securing national attention; and obtaining resources. It is critical to remember that advocacy never ends, the need to magnify work and amplify voices is always present, there is no room for complacency, and there exists intersectionality in all issues (social and health justice are all-encompassing).
#justB Storyteller Interactive Discussion
Moderator: Farma Pene, Community Projects Coordinator in Viral Hepatitis Program, New York City Department of Health & Mental Hygiene
#justB Storyteller: Bright Ansah
In this session, Bright spoke about his experience with living with hepatitis B, including his diagnosis, treatment, and communication with his family. He spoke about being able to put a face to hepatitis B, which has helped many people and also allowed him to build strong relationships with a broader community. Bright found out about his status in 2014 and initially felt very lost. The first couple of years were a big struggle, as he did not want to worry his family and it took a while for him to come to peace with his diagnosis. This peace eventually came from a lot of extensive research, after which he found out that hepatitis B is not a death sentence and can be managed very well. He then started to think about what he could do to prevent someone else from becoming “a statistic.”
When asked what message he would share with newly diagnosed people, Bright stated that stress and anxiety are normal, but you are not alone. Every day, people find out they are infected. Bright has given his contact information to many different people and he emphasized the incredible importance of having a support system in place. When asked about how he overcame stigma and barriers, Bright replied that the biggest barrier is the mental hurdle. It took him about two years to not feel overwhelmed. Bright does still struggle with feeling rejected from clinical trials and finds this very frustrating – he still feels like he is being punished for having chronic hepatitis B.
The best advice that Bright can offer is to always be your own advocate and do your own research. If the first doctor or liver specialist that you find does not take you seriously or you feel that they are not doing enough for you, you do not need to stay with them and you can absolutely find another doctor. Bright went through this process himself and eventually found a doctor he likes at Johns Hopkins, through a friend of his. This can be a challenge with language barriers, but there are organizations that can help and there is a Specialist Directory tool on the Hepatitis B Foundation website, a resource that Bright stated he found very helpful, along with the website of the National Institutes of Health (NIH). Farma reiterated that the HBF website is a great place to visit to understand lab results in plain language, and offers a good collection of resources for family and community members of people living with hepatitis B. Bright finds that the most important questions to ask are: What exactly is your status and viral load? What should reasonable expectations for your life and health be? Is treatment appropriate and if so, which one? It is crucial to establish mutual respect with your doctor, and to iterate what expectations you have for your doctor as well. The most important messages are: Reach out. Ask questions. Stand up for yourself. You are not alone.
The Important Role that NAIRHHA Day Plays from a National and Policy Prospective
Moderator: Chioma Nnaji, MPH, MEd, Program Director, Multicultural AIDS Coalition
Panelists: Boatemaa Ntiri-Reid, JD, MPH, Hepatitis Director, NASTAD
Jennease Hyatt, Community Liaison for Boston/New England, GILEAD
The final conversation focused on why NAIRHHA Day should become a nationally recognized holiday. VIral hepatitis is the seventh leading cause of death globally. Nineteen million African adults are living with hep C, and 5-8% are living with hep B. Hep B and HIV need to be considered part of the health portfolio of African immigrants, with care taken that this does not compound stigma. NAIRHHA Day is really an opportunity to focus on this community specifically. You get things done by doing them yourselves and we are who we’ve been waiting for.
There is a strong need for a multi-faceted approach to this work and for local, state, and national partnerships. African immigrants need to be at the forefront of the HIV/AIDS conversation. In Massachusetts specifically, over half of new HIV infections are in immigrant communities: These communities need to be leading the conversation. In terms of the role that government agencies play in NAIRHHA day, this needs to be more than a supportive role. We need to talk about novel approaches. We know that there are healthcare disparities. We need to consider how to use funding to build capacity and engagement, and make sure this work moves forward. This should include counting in community members and small businesses and bringing people to the table who are not usually there. The community really wants to be engaged. Promoting testing and awareness at soccer games, for example, is a great idea. We need strong partnerships and leadership from the beginning and to determine different approaches and thus different outcomes. Community members are the experts and we need to treat them as such.
Across the country, there are jurisdictions that have a prevalence of 40,000 people living with hepatitis in a state and viral hepatitis staff have teams of 1-7. Local and state health departments have more of a role to play. CDC publishes a list of viral hepatitis coordinators by state. It would be great to close the gap with them and discuss more about what they are doing generally and how to get them more involved in NAIRHHA Day specifically. In thinking about a vision for NAIRHHA Day next year, thoughts included that everyone who serves African immigrant communities (including health centers and multi-service organizations) needs to see themselves as part of the solution. Additionally, federal representation should be part of NAIRHHA Day next year.
Trivia and Conclusion
The event concluded with trivia questions about HIV and hepatitis B prevention, testing, and treatment. Amazing music was provided by DJ WhySham and Laura O (@LauraO_TV) served as an excellent moderator. Thanks to everyone who participated and we look forward to another wonderful event next year!
Commemorating National African Immigrant and Refugee HIV & Hepatitis Awareness (NAIRHHA) Day 2020
Each year in September, the Hepatitis B Foundation, along with partners around the U.S., recognizes National African Immigrant and Refugee HIV and Hepatitis Awareness (NAIRHHA) Day. Founded by advocates in Massachusetts, Washington D.C., and New York, NAIRHHA Day has been observed annually on September 9th by healthcare professionals, awareness campaigns, and other organizations since 2014. Although not yet nationally recognized, the Multicultural AIDS Coalition (MAC) and the Coalition Against Hepatitis for People of African Origin (CHIPO) are working to establish NAIRHHA day as its own federally designated awareness day. As explained by Chioma Nnaji, Director at the Multicultural AIDS Coalition’s Africans For Improved Access (AFIA) program, there is a great need to establish NAIRHHA day as its own day. “Several of the current awareness days are inclusive of African immigrant communities, but do not comprehensively address their unique social factors and cultural diversity, as well as divergent histories and experiences in the US.”
Why NAIRHHA Day?
People born outside of the U.S. often face different health challenges than those born in the country and face various barriers to accessing important healthcare services. African immigrants (AI) are disproportionately burdened by HIV and hepatitis B. Advocates for NAIRHHA Day recognized the need to address these health issues in the community and thought that a combined awareness day would be the most effective way to reach the largest number of people impacted.
Hepatitis B presents a significant public health burden for many African countries, and subsequent immigrant populations living in the United States. Although data is limited on hepatitis B infection among African immigrant (AI) and refugee communities in the U.S., studies have shown infection rates are high – between 5 and 18%1,2,3,4,5. One community study in Minnesota even found AIs accounting for 30% of chronic hepatitis B infections 6. AI communities are also known to be disproportionately affected by HIV/AIDS, with diagnosis rates six times higher than the general U.S. population7. Despite this alarming disparity, HIV and hepatitis B awareness, prioritization, and funding has remained limited for this population.
Two of the largest barriers to testing for HIV and hepatitis B among African immigrants are lack of awareness and stigma. Cultural and religious values shape the way people view illness, and there can be fears around testing and diagnosis of illness, and moral implications for why someone may feel they are at risk. While stigma about HIV/AIDS and hepatitis B often come from within one’s own community and culture, it is primarily driven by lack of awareness. Oftentimes, awareness is low in an individual’s home country because of limited hepatitis and HIV/AIDS education, resources, and healthcare infrastructure. When they arrive in the U.S., awareness remains low for similar reasons. Community health workers and physicians are vital stakeholders to raise community awareness in a culturally sensitive way to help identify current infections and prevent future ones through vaccination.
Commemorating NAIRHHA Day in 2020
Recognizing NAIRHHA Day is important to address the numerous barriers to prevention and treatment that African immigrants face. It was also founded to acknowledge the cultural and ethnic differences that influence how African-born individuals interact with their medical community and the concept of illness. The specific goals of this day of recognition include:
Raising awareness about HIV/AIDS and viral hepatitis to eliminate stigma;
Learning about ways to protect against HIV, viral hepatitis and other related diseases;
Taking control by encouraging screenings and treatment, including viral hepatitis vaccination;
Advocating for policies and practices that promote healthy African immigrant communities, families, and individuals.
This year, CHIPO, Multicultural AIDS Coalition, Hepatitis B Foundation and CHIPO-NYC, developed a suite of social media materials to improve awareness and create action around hepatitis B. This year’s campaign is focused on the incorporation of African proverbs into health messaging around ending stigma and increasing hepatitis B and HIV awareness, screening, prevention, and treatment. All graphics and an accompanying list of posts and tweets to go with each one can be found in a Google Drive folder here. We will be promoting the materials throughout the month of September, and we invite you to share them widely. Together, we can make a difference to address HIV and viral hepatitis among African immigrant communities!
Kowdley KV, Wang CC, Welch S, Roberts H, Brosgart CL. (2012). Prevalence of chronic hepatitis B among foreign-born persons living in the United States by country of origin. Hepatology, 56(2), 422-433. And Painter. 2011. The increasing burden of imported chronic hepatitis B—United States, 1974-2008. PLoS ONE 6(12): e27717.
Chandrasekar, E., Song, S., Johnson, M., Harris, A. M., Kaufman, G. I., Freedman, D., et al. (2016). A novel strategy to increase identification of African-born people with chronic hepatitis B virus infection in the Chicago metropolitan area, 2012-2014. Preventing Chronic Disease, 13, E118.
Edberg, M., Cleary, S., & Vyas, A. (2011). A trajectory model for understanding and assessing health disparities in Immigrant/Refugee communities. Journal of Immigrant and Minority Health, 13(3), 576-584.
Kowdley, K. V., Wang, C. C., Welch, S., Roberts, H., & Brosgart, C. L. (2012). Prevalence of chronic hepatitis B among foreign‐born persons living in the united states by country of origin. Hepatology, 56(2), 422-433.
Ugwu, C., Varkey, P., Bagniewski, S., & Lesnick, T. (2008). Sero-epidemiology of hepatitis B among new refugees to Minnesota. Journal of Immigrant and Minority Health, 10(5), 469-474.
Kim WR, Benson JT, Therneau TM, Torgerson HA, Yawn BP, Melton LJ 3d. Changing epidemiology of hepatitis B in a U.S. community. Hepatology 2004;39(3):811–6.
Blanas, D. A., Nichols, K., Bekele, M., Lugg, A., Kerani, R. P., & Horowitz, C. R. (2013). HIV/AIDS among African-born residents in the United States. Journal of immigrant and minority health, 15(4), 718–724.
The Hepatitis B Foundation today announced the launch of its B the Voice Story Bank. Building upon the success of our national #justB campaign – launched in partnership with StoryCenter and AAPCHO in May 2017 – we are excited to expand our storytelling efforts internationally. Almost 300 million people worldwide live with chronic hepatitis B, but so many of their stories remain untold. Often this is due to stigma, fear of discrimination, lack of community awareness or understanding of the disease, or lack of support for those wishing to speak out publicly about hepatitis B. The new B the Voice Story Bank provides an online platform for people living with hepatitis B, their families, and community health workers and health care providers to share their first-hand knowledge and experiences with a global audience.
Documenting and sharing the impact that hepatitis B has on individuals, families, and communities around the world is essential in keeping up the momentum to find a cure for hepatitis B and to achieve the global elimination targets set by WHO to be achieved by 2030.
Why is B The Voice Story Bank Important?
“This new program provides many more people with the chance to tell their stories about living with hepatitis B around the world, and the Foundation and our partners will continue sharing this compelling content through our social media and other means” – Chari Cohen, DrPH, MPH (Senior Vice President, Hepatitis B Foundation)
“Speaking out relieves one from self-stigma and denial, but more importantly creates room for one to advocate towards changing something for the better. When you keep silent, the people in power will assume everything is okay until one comes out to challenge the status quo… I also want people to know that while Hepatitis B is a silent killer, one can live a positive and productive life as long as one knows early and follows the doctors’ advice.” -Kenneth Kabagambe, Director, Africa Hepatitis Initiative (Kampala, Uganda)
“Centering the voices of people living with hepatitis B is critical in raising awareness, combating stigma and discrimination, and encouraging more people to speak out or take action in other ways.” “That’s true whether it means getting tested for hepatitis B, talking to a doctor, educating family or community members about prevention or advocating for resources and policies to support countrywide hepatitis B elimination.” – Rhea Racho, MPAff (Public Policy and Program Manager, Hepatitis B Foundation)
Please submit your story whether it’s about diagnosis, living with hepatitis B, access to care and treatment, stigma and discrimination, education and advocacy, support and caregiving, service and programs, or other topics related to hepatitis B. Feel free to answer the questions or write your own narrative. The questions are merely there for guidance – do not feel obligated to answer all of them. We also encourage you to upload a photo of yourself if you are comfortable doing so.
How Will My Story Be Shared?
The content you submit through the online form will first be reviewed by HBF staff. You will then be contacted via email if your story is selected for the B the Voice Story Bank. We may feature your entire story or pick out a few quotes to feature on HBF’s website, blog, social media accounts, newsletters, and other channels. Your first name (there is also the option to remain anonymous) and photo (if you choose to submit one) will be published along with your story. You may also choose to share additional details about yourself such as which country you are from, your age, and if you are affiliated with an organization – but sharing these details is optional.
Hepatitis B is the global pandemic no one talks about, yet 292 million people worldwide have been infected. In 2015, the World Health Organization estimated that hepatitis B caused 887,000 deaths annually.
Today, 292 million people have chronic hepatitis B1. Despite the availability of an effective vaccine, the number of people living with hepatitis B virus is projected to remain at the current, unacceptably high level for decades and cause 20 million deaths through 2030.
How can this happen? Viral hepatitis infection and death rates far outstrip that of ebola and zika. In fact, you have to combine the death toll from HIV and tuberculosis to find human suffering on par with what viral hepatitis causes around the world each year. How has this pandemic remained so hidden and ignored for so long? There are several factors that have kept hepatitis B off public health’s global radar. It’s a complicated, silent infection, often with few or no symptoms. Those who have it have been silenced by shame and ignorance, and more than two-thirds of those infected with hepatitis B have never been tested and are unaware of their positive status.
And then there’s avoidance by the global healthcare community. The development of a hepatitis B vaccine 40 years ago was thought to signal the death knell of this disease. While new infections have plummeted in North America and Europe, in impoverished countries, the vaccine is often not available or too expensive and infected mothers continue to unknowingly infect their children at birth.
There have been successful hepatitis B immunization campaigns around the world, even in poor, remote areas, but there’s a catch. The Global Vaccine Alliance (Gavi) provides a free hepatitis B pentavalent vaccine which is effective in children starting at 6 weeks of age. To break the mother-to-child infection cycle, a different and more costly hepatitis B vaccine must be administered as-soon-as-possible, within 12 hours of birth. However, this vaccine is often unavailable and out-of-reach financially in rural Africa and Asia, which is why chronic hepatitis B rates remain stubbornly high and are projected to remain unchanged.
To successfully combat hepatitis B, communities need to launch campaigns that combat stigma and teach how to prevent the spread of the disease through education and immunization. They need the resources to test people for hepatitis B and vaccinate those who need it. They also need to teach healthcare providers how to treat patients with liver damage.
Fortunately, we have started to see change. On May 28, 2016, at the United Nations World Health Assembly, 194 countries made a historic commitment to eliminate viral hepatitis by 2030. The Global Health Sector Strategy for Viral Hepatitis pledges to reduce deaths from hepatitis B and C by 65 percent and increase treatment by 80 percent. This action is the greatest global commitment to viral hepatitis ever taken.
On July 28, 2016, a campaign called NOhep, the first global movement to eliminate viral hepatitis, launched on World Hepatitis Day by the World Hepatitis Alliance. This day was chosen to mark the birthday of Baruch S. Blumberg, MD, D.Phil, who won the Nobel Prize in Medicine for the discovery of the hepatitis B virus.
Many of our partners and other organizations around the world are raising awareness to highlight World Hepatitis Day. Here are some of the activities you can support.
WHO – The World Health Organization is celebrating World Hepatitis Day through its theme: Hepatitis-free future with a strong focus on perinatal transmission. Read more about their efforts here. You can register to join their global virtual event, WHO Commemoration of World Hepatitis Day, on July 28th 1pm-3:15pm CEST here.
Hep B United – Yesterday, in anticipation of World Hepatitis Day, Hep B United kicked off a week of action with a call where we heard about the importance of hepatitis B elimination from hepatitis B advocates and representatives Judy Chu and Grace Meng. You can advocate for hepatitis B elimination here.
Hep B United and the Hepatitis B Foundation will have a #ThrowbackWHD twitter storm all day July 28th, World Hepatitis Day! Partners and hepatitis B advocates are encouraged to share memories from past in-person Hep B United Summits and Advocacy Days. Share your memories, pics, and videos with the hashtags: #ThrowbackWHD #WorldHepatitisDay and #Hepbunite.
Global Liver Institute – On July 28 at 12:30pm-1pm ET, the Global Liver Institute will host GLI LIVE on the Global Liver Institute’s Facebook page. Dr Chari Cohen will discuss the progress and challenges with eliminating hepatitis B globally, and strategies for commemorating World Hepatitis Day.
DiaSorin hosts Dr. Robert Gish, renowned hepatologist and HBF medical director – July 28th, 12 pm ET. Register now for Laboratory Testing for Viral Hepatitis: What’s new and what has changed?
Hep Free Hawaii – On World Hepatitis Day, July 28th at 12pm HST, Hep Free Hawaii will unveil Hawaii’s first Hepatitis B Elimination Strategy. More information and registration here!
CEVHAP and Burnet Institute – The Coalition to Eradicate Viral Hepatitis in Asian Pacific and the Burnet Institute is hosting a webinar on July 24th at 11am (GMT+5) to discuss access to hepatitis care, the world of hepatitis amidst the COVID-19 pandemic, and literacy on COVID-19 and hepatitis. You can stream it here.
You can be part of this global social justice movement. Take action, speak out, and join the effort to eliminate viral hepatitis by 2030. In anticipation of World Hepatitis Day 2020, NOhep is asking you to urge governments worldwide to uphold their commitment to eliminate hepatitis B. Add your voice to the open letter here.
For more information, visit the NOhep website, the Hepatitis B Foundation website or Hep B United’s website to learn how to lend your voice to this fight and to help address hepatitis and save lives in your community.
Razavi H. (2020). Global Epidemiology of Viral Hepatitis. Gastroenterology clinics of North America, 49(2), 179–189. https://doi.org/10.1016/j.gtc.2020.01.001
Hepatitis simply means inflammation of the liver which can be caused by infectious diseases, toxins (drugs and alcohol), and autoimmune diseases. The most common forms of viral hepatitis are A, B, C, D, and E. With 5 different types of hepatitis, it can be confusing to know the differences among them all.
While all 5 hepatitis viruses can cause liver damage, they vary in modes of transmission, type of infection, prevention, and treatment.
Hepatitis A (HAV) is highly contagious and spread through fecal-oral transmission or consuming contaminated food or water1. This means that if someone is infected with hepatitis A they can transmit it through preparing and serving food and using the same utensils without first thoroughly washing their hands. Symptoms of HAV include jaundice (yellowing of skin and eyes), loss of appetite, nausea, fever, abnormally colored stool and urine, fever, joint pain, and fatigue1. Sometimes these symptoms do not present themselves in an infected person which can be harmful because they can unknowingly spread the virus to other people. Most people who get HAV will feel sick for a short period of time and will recover without any lasting liver damage2. A lot of hepatitis A cases are mild, but in some instances, hepatitis A can cause severe liver damage. Hepatitis A is vaccine preventable and the vaccine is recommended for people living with hepatitis B and C. Read this blog post for a detailed comparison of hepatitis B and hepatitis A!
Hepatitis B (HBV) is transmitted through bodily fluids like blood and semen, by unsterile needles and medical/dental equipment and procedures, or from mother-to-child during delivery1. HBV is considered a “silent epidemic” because most people do not present with symptoms when first infected. This can be harmful to individuals because HBV can cause severe liver damage, including cirrhosis and liver cancer if not properly managed over time3. Hepatitis B can either be an acute or chronic infection meaning some cases last about 6 months while other cases last for a lifetime. In some instances, mostly among people who are infected as babies and young children, acute HBV cases can progress to a chronic infection3. Greater than 90% of babies and up to 50% of young children will develop lifelong infection with hepatitis B if they are infected at a young age.
Hepatitis C (HCV) is similarly transmitted like HBV through bodily fluids, like blood and semen, and by unsterile needles and medical/dental equipment and procedures. Symptoms of HCV are generally similar to HAV’s symptoms of fever, fatigue, jaundice, and abnormal coloring of stool and urine1, though symptoms of HCV usually do not appear until an infected individual has advanced liver disease. Acute infections of hepatitis C can lead to chronic infections which can lead to health complications like cirrhosis and liver cancer1. Read this blog for a detailed comparison of hepatitis B and hepatitis C!
Hepatitis Delta (HDV) infections only occur in persons who are also infected with hepatitis B1,3. Hepatitis Delta is spread through the transfer of bodily fluids from an infected person to a non-infected person. Similar to some other hepatitis viruses, hepatitis Delta can start as an acute infection that can progress to a chronic one. HDV is dependent on the hepatitis B virus to reproduce3. This coinfection is more dangerous than a single infection because it causes rapid damage to the liver which can result in fatal liver failure. Find out more about hepatitis B and hepatitis Delta coinfection here!
Hepatitis E (HEV) is similar to hepatitis A as it is spread by fecal-oral transmission and consumption of contaminated food and water1. It can be transmitted in undercooked pork, game meat and shellfish. HEV is common in developing countries where people don’t always have access to clean water. Symptoms of hepatitis E include fatigue, loss of appetite, stomach pain, jaundice, and nausea. Talk to your doctor if you are a pregnant woman with symptoms as a more severe HEV infection can occur. Many individuals do not show symptoms of hepatitis E infection1. Additionally, most individuals recover from HEV, and it rarely progresses to chronic infection. Read this blog for a detailed comparison of hepatitis B and hepatitis E!
Here is a simple table to further help you understand the differences among hepatitis A, B, C, D, and E.
Fortunately, hepatitis viruses are preventable.
Hepatitis A is preventable through a safe and effective vaccine. The Centers for Disease Control and Prevention (CDC) recommend that children be vaccinated for HAV at 12-23 months or at 2-18 years of age for those who have not previously been vaccinated. The vaccine is given as two doses over a 6-month span1. This vaccine is recommended for all people living with hepatitis B & C infections
Hepatitis B is also preventable through a safe and effective vaccine. The vaccine includes 3 doses over a period of 6 months, and in the U.S. there is a 2-dose vaccine that can be completed in 1-month1,3. Read more here, if you would like to know more about the vaccine series schedule.
Hepatitis C does not have a vaccine, however, the best way to prevent HCV is by avoiding risky behaviors like injecting drugs and promoting harm reduction practices. While there is no vaccine, curative treatments are available for HCV1.
Hepatitis Delta does not have a vaccine, but you can prevent it through vaccination for hepatitis B1,3.
Hepatitis E does not have a vaccine available in the United States. However, there has been a vaccine developed and licensed in China1,2.