The Need for an Adult Hepatitis B Vaccination Awareness Day
In 2019, the hepatitis B community successfully advocated for the introduction of U.S. House and Senate resolutions to designate April 30th as National Adult Hepatitis B Vaccination Awareness Day for the first time! Two years later, the Hepatitis B Foundation is proud to support this day and continue adult vaccination efforts as we gear up for May, Hepatitis Awareness Month.
On April 30th we bring awareness to adult hepatitis B vaccination efforts. Despite a safe and effective hepatitis B vaccine, only 25% of the U.S. adult population has been vaccinated, primarily due to people being born before the vaccine was universally recommended.1 New hepatitis B infections are highest among people aged 30-49 years because many people at risk in this group have not been vaccinated in spite of federal recommendations.
Acute hepatitis B cases are rising partially due to the opioid epidemic with the increase in injection drug use. Hepatitis B can be spread through needle sharing or unsterile drug injection equipment. Additionally, hepatitis B can be transmitted from mother-to-child, and about 1,000 newborns become infected each year in the U.S..2 This statistic is concerning because mother to child transmission can be prevented in most cases with appropriate use of the vaccine. When exposed to the hepatitis B virus at birth, 90% of newborns will develop chronic life-long infection, putting them at much greater risk for cirrhosis and liver cancer.
Immunization rates also remain low among vulnerable populations including those living with other chronic conditions such as hepatitis C, HIV, kidney disease, or diabetes. In fact, just 12% of diabetic adults 60 years old or older are fully vaccinated, and 26% of diabetic adults ages 19-59 have received the complete vaccine series. Healthcare workers are an under-vaccinated vulnerable population as well. According to the Centers for Disease Control and Prevention, just 60% of healthcare personnel have completed their vaccine series. Get yourself vaccinated for yourself and your loved ones!
How to Become Vaccinated for Hepatitis B
In the era of COVID, we are reminded how important vaccines are. Make sure you and your loved ones are vaccinated for hepatitis B. If you are not vaccinated, ask your doctor or healthcare provider for the hepatitis B vaccine. This safe and effective vaccine is given in 2 or 3 doses depending on the vaccine:
The three-dose vaccine (scheduled at 0, 1 and 6 months):
The first dose is administered at any time (newborns should receive their first dose in the delivery room).
The second dose is administered one month after the first dose.
The third dose is administered 6 months after the first dose.
Sometimes committing to a 3-dose shot is hard. Luckily, there is an approved 2-dose hepatitis vaccine, Heplisav-B, for adults in theU.S..
The two-dose vaccine:
The first dose is administered at any time.
The second and final dose is administered one month after the first dose.
More information on the dosing schedule can be found here.
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You can show your support for National Adult Hepatitis B Vaccine Day by using the social media toolkit and hashtag #AdultHepBVaxDay on April 30th and when discussing the hepatitis B vaccine on social media! Graphics are also available to share throughout your networks.
Join the Hepatitis B Foundation and other leading hepatitis organizations for a Congressional Briefing on Thursday, April 29th at 3pm ET where a group of panelists will discuss how we can work towards achieving health equity by increasing adult hepatitis B vaccination rates.
The Hepatitis B Foundation is excited to announce our support of a new global online community support group called Hep B Community. Thomas Tu, PhD, a researcher at Westmead Institute for Medical Research founded this online community to reach a global audience who might need support if they are affected by hepatitis B.
Dr Tu stated that “While hepatitis B remains incurable, it can be managed and treated. But, people with hepatitis B face social stigma and discrimination, discouraging them from seeking medical help that could prevent progression of their illness to serious disease like liver cancer,”. He further explained that this online forum is important for people affected by hepatitis B to feel supported and empowered to take control of their diagnosis.
Westmead Hospital’s Storr Liver Centre and the Hepatitis B Foundation have provided start-up funding and help coordinate the forum with support from the World Hepatitis Alliance. The site is peer-led, volunteer-run and is free to join. Already, more than 200 members from all over the world have joined.
Chari Cohen, DrPH, MPH, senior vice president, Hepatitis B Foundation, believes, “The new forum is critically important because people can anonymously seek advice about how to live with hepatitis B, and what they can do to protect their liver and long-term health.” If you are considering joining Hep B Community – do not hesitate! In fact, research has shown that people participating in hepatitis support groups can increase their knowledge, coping, and compliance.1
How Does it Work?
The online forum has multiple sections like learning resources, media about hepatitis B, and general discussion.
You can post completely anonymously and a hepatitis B expert or a person living with hepatitis B will respond to your questions. You can also choose your own username and the platform will never show your email, ensuring privacy and confidentiality.
The hepatitis B experts responding to your questions go through a verification process to identify that they are trustworthy sources of information. These providers are clinicians, nurses, scientists or patient experts, there to provide reliable answers and give information about health guidelines and treatment options. The forum also has researchers and scientists giving explanations and updates about technical information related to hepatitis B virus and treatment.
The site is completely free! You can access the site even without making an account if you want to browse. However, in order to ask questions or post content, you will need to create an account. Empower yourself and join the other 200 users and immerse yourself in the supportive hepatitis B community!
Reference
Jessop, Amy B. PhD, MPH; Cohen, Chari MPH; Burke, Monika M. RN; Conti, Molli BS; Black, Martin MD Hepatitis Support Groups, Gastroenterology Nursing: July 2004 – Volume 27 – Issue 4 – p 163-169
Hepatitis delta is a liver infection that results from the hepatitis delta virus (also known as HDV) that causes the most severe form of viral hepatitis known to human beings. It is also the smallest virus known to infect humans. Hepatitis delta is unique because it is dependent on the hepatitis B virus (HBV) to infect and reproduce in liver cells, so those already infected with hepatitis B are at a greatly increased risk of developing hepatitis delta.
Since testing for hepatitis delta is not as widespread as it should be (everyone who is diagnosed with hepatitis B should also be tested for hepatitis delta), the exact number of people living with hepatitis delta is unknown. Some reports point to 15-20 million people living with hepatitis delta worldwide, but other studies have estimated that as many as 60-70 million people could be living with hepatitis delta around the world.
Co-Infection with Hepatitis B
Co-infection with hepatitis B and hepatitis delta can cause more serious liver disease than hepatitis B infection alone. This includes faster progression to liver fibrosis (or scarring), higher risk of liver cancer, and earlier onset of cirrhosis or liver failure.
There are two ways in which someone living with hepatitis B can become infected with hepatitis delta. One is through co-infection, which occurs when an individual acquires hepatitis B and hepatitis delta infections at the same time, and the other is through super-infection, which occurs when someone who is already living with hepatitis B acquires hepatitis delta.
A co-infection is less common and will often clear up on its own within six months, but sometimes it can cause very dangerous or fatal liver failure. A superinfection is more common and is the culprit of severe liver disease. As many as 90% of people with a superinfection will develop chronic (life-long) hepatitis B and hepatitis delta infections, 70% of which will progress to cirrhosis. This compares to only 15-20% of chronic hepatitis B infections alone.
Transmission and Prevention
Hepatitis delta can be transmitted in the same ways as hepatitis B, through exposure to infected blood or bodily fluids. This occurs most often through the sharing of hygiene equipment; practices of bodily alterations, such as tattoos, piercings or scarification; unsterile healthcare practices; sharing needles, syringes, or other paraphernalia during injection drug use; or having unprotected sex. Although hepatitis B virus is most commonly transmitted from mothers to their babies during childbirth, it is believed that hepatitis delta transmission through this route is uncommon. Since hepatitis delta cannot be contracted on its own, only people who are already infected with hepatitis B or who are at high risk of contracting both viruses simultaneously can contract hepatitis delta.
A vaccine for hepatitis delta does not exist, but fortunately, the vaccine for hepatitis B protects against hepatitis delta as well! Just as with hepatitis B, family members and sexual partners of people living with hepatitis delta should also receive the hepatitis B vaccine to significantly lower their risk of contracting hepatitis B and hepatitis delta. For those who are already infected with chronic hepatitis B, the best way to protect yourself from hepatitis delta is to practice protected sex (with a condom) and avoid potential blood exposure.
All individuals who have been diagnosed with hepatitis B should also get tested for hepatitis delta. The test is a simple blood test. Hepatitis delta can be managed by a doctor – it is most dangerous when a person does not know they have it, making it that much more important to get tested!
Who is at Risk
If you are living with chronic hepatitis B, you are at risk for hepatitis Delta. Groups at risk for hepatitis delta include:
People chronically infected with hepatitis B are at risk for infection with HDV.
People who are not vaccinated for hepatitis B
People who inject drugs
Indigenous people and people with hepatitis C virus or HIV infection
Recipients of hemodialysis
Men who have sex with men
Commercial sex workers
Individuals from countries or regions where hepatitis delta prevalence is high
Several geographical hotspots have a high prevalence of hepatitis delta infection, including Mongolia, the Republic of Moldova, and countries in Western and Middle Africa.
For Patients
If you are living with hepatitis B, it is recommended you get tested for hepatitis delta. Please ask your healthcare providers to be tested for hepatitis delta.
The Hepatitis B Foundation has resources for patients living with hepatitis delta.
Drug Watch – Drugs and Medications in Development for Hepatitis Delta
Clinical Trials – Clinical trials are research studies that test new potential treatments for a disease. Talk to your doctor about possible clinical trials that could be helpful to you.
Find a Doctor – Visit our Physician Directory to locate a doctor near you! It now includes a specific search tool to locate doctors that also manage hepatitis delta patients. For additional assistance locating a doctor, email connect@hepdconnect.org.
Providers in the United States can request hepatitis Delta tests from Quest Diagnostics. It is recommended that you first call your local Quest representative to confirm that the location does this specialty testing.
Below is the coding list for hepatitis delta testing as well as quantitative HBsAg and hepatitis B genotyping.
Quest Test Code for HDV Antibody Total—4990 Set up 2 times/week
Quest Test Code for HDV Antibody IgM—35664 Set up 2 times/week
Quest Test Code for HDV RNA Quantitative PCR—37889 Set up 6 times/week
Quest does not currently offer a national test code for hepatitis delta antibody reflex to HDV RNA quantitative, but you can coordinate with the Quest commercial person that covers your account to possibly set up a custom reflex.
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.
An example of a project for which CHIPO provided great support and guidance was the production of the first nationally available hepatitis B educational resources, specifically for African populations. Created in collaboration with the Centers for Disease Control and Prevention (CDC), these materials are part of a train-the-trainer-based model, and include a suite of materials, including a downloadable presentation on hepatitis B for community health workers, a printable flip chart for direct community education, and supporting fact sheets and resources. The presentation and flip chart have also been translated into Amharic, Arabic, French, and Swahili.
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.
B Informed
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!
B Connected
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!
References:
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.
