As August wraps up National Immunization Awareness Month (NIAM). This month we raise awareness to highlight the importance of vaccination. In the era of COVID-19, we are shown how effective and protective vaccines are. During NIAM, we encourage you to talk to your doctor, nurse, or healthcare professional to ensure you and your family are protected against serious diseases by getting caught up on routine vaccination, especially the hepatitis B vaccination!
What is Hepatitis B
Hepatitis B is the most common serious liver infection in the world. It is caused by the hepatitis B virus that attacks and injures the liver. Two billion people (or 1 in 3) have been infected and about 300 million people are living with a chronic hepatitis B infection. Each year around 820,000 people die from liver disease caused by hepatitis B despite the fact that it is preventable and treatable. In the United States, 2.4 million people are chronically infected with hepatitis B!
The hepatitis B virus (HBV) is transmitted through blood and infected bodily fluids. It can be passed to others through direct contact with blood, unprotected sex, unsterilized or contaminated needles, and from an infected woman to her newborn during pregnancy or childbirth.
Hepatitis B is a “silent epidemic” because most people do not have symptoms when they are newly infected or chronically infected. Thus, they can unknowingly spread the virus to others and continue the silent spread of hepatitis B. For people who are chronically infected but don’t have any symptoms, their liver is still being silently damaged which can develop into serious liver disease such as cirrhosis or liver cancer.
Preventing Hepatitis B
It takes only 2 to 3 shots to protect yourself and your loved ones against hepatitis B for a lifetime.
The hepatitis B vaccine is a safe and effective vaccine that is recommended for all infants at birth and for children up to 18 years. The hepatitis B vaccine is also recommended for adults living with diabetes and those at high risk for infection due to their jobs, lifestyle, living situations, or country of birth. Since everyone is at some risk, all adults should seriously consider getting the hepatitis B vaccine for lifetime protection against a preventable chronic liver disease.
The hepatitis B vaccine is also known as the first “anti-cancer” vaccine because it prevents hepatitis B, the leading cause of liver cancer worldwide.
You cannot get hepatitis B from the vaccine. All hepatitis B vaccines that have been used since 1986 are made synthetically – meaning the hepatitis B vaccines do not contain any blood products. Learn more.
How to Get Vaccinated
If you are unsure of your hepatitis B vaccination status, ask your healthcare provider for a simple blood test!
If you have not been vaccinated – ask your healthcare provider for the simple and effective vaccine! They are generally available at your doctor’s office, local pharmacy, or local health clinic. If you are United States-based the Center for Disease Control maintains a database of locations that offer the hepatitis B vaccine. You can search for locations within the U.S!
During the Covid-19 pandemic, there has been much controversy over vaccines. Although there has always been an anti-vaccine movement, it has grown during the pandemic. However, despite all of that, it is highly recommended that people who are at risk get the hepatitis B vaccine. Almost 300 million people worldwide have chronic hepatitis B and almost 800,000 people die every year due to hepatitis B complications. In fact, hepatitis B is the greatest risk factor for developing liver cancer (HCC). The hepatitis B vaccine is simple and effective. It requires either 2 or 3 shots over a few months. It is one of the most-administered vaccines worldwide, and one of the safest, with few side effects!
There are many groups that may need the vaccine. These include but are not limited to:
All infants, beginning at birth
All children aged <19 years who have not been vaccinated previously
Susceptible sexual partners of hepatitis B-positive persons
Sexually active persons who are not in a long-term, mutually monogamous relationship (e.g., >one sex partner during the previous six months)
Persons seeking evaluation or treatment for a sexually transmitted disease
Men who have sex with men
Injection drug users
Susceptible household contacts of hepatitis B-positive persons
Healthcare and public safety workers at risk for exposure to blood
Persons with end-stage renal disease, including pre-dialysis, hemodialysis, peritoneal dialysis, and home dialysis patients
Residents and staff of facilities for developmentally disabled persons
Travelers to and families adopting from countries where hepatitis B is common (e.g. Asia, Africa, South America, Pacific Islands, Eastern Europe, and the Middle East)
Persons with chronic liver disease, other than hepatitis B (e.g. cirrhosis, fatty liver disease, etc.)
Persons with hepatitis C infection
Persons with HIV infection
Adults with diabetes aged 19 through 59 years (clinicians can decide whether or not to vaccinate their diabetic patients ≥60 years)
Now, this is a large list of people who might need the vaccine, but how hard is it to receive one? It is one of the easiest vaccines to get. Most hospitals carry the vaccine, and in the UK, hospitals are required to give the vaccine to at-risk groups. In the United States, the Affordable Care Act should cover preventive services; so the hepatitis B vaccine should be mostly available free of cost.
The Hepatitis B Foundation recommends everyone who is at risk or may in the future be at risk receive the vaccine. It is a smooth and seamless process that can prevent HBV, liver cancer, and let you live a long and healthy life. If you are not vaccinated for hepatitis B, ask your doctor or primary care provider for the vaccination!
If you are unsure of your hepatitis B status, ask your doctor or primary care provider to become tested! The hepatitis B test is super simple – it only requires one blood sample. Your doctor should order the “hepatitis B panel” which includes different tests. Read more hepatitis B testinghere!
June is Men’s Health Month. This month we bring awareness to preventable health problems and encourage early detection and treatment of disease among men and boys. In 2020, The World Health Organization found that liver cancer is the third leading cause of cancer deaths with 830,000 deaths.1 Liver cancer occurs more often in men than in women with it being the 5th most commonly occurring cancer in men and the 9th most commonly occurring cancer in women.2
There are two main types of liver cancers, hepatocellular carcinoma (HCC) which accounts for about 75% of liver cancer cases, and intrahepatic cholangiocarcinoma which accounts for 12-15% of cases. Liver cancer especially impacts Asian countries like Mongolia, Vietnam, Laos, Cambodia, Thailand, and China. Hepatitis B is the leading cause of HCC globally. Of the 300 million individuals living with a chronic hepatitis B diagnosis, about 25% will develop HCC.3
HCC affects men with an incidence 2x-4x higher than women due to differences in behavioral risk factors and biological factors.3 Research has found men were less likely to undergo HCC screening and more likely to smoke. Additionally, studies have shown alcohol is a major risk factor for HCC. In the United States, HCC associated with alcohol is higher among men than in women at 27.8% and 15.4% respectively.3
Biologically, there is evidence estrogen (a female hormone) decreases IL-6 mediated hepatic inflammation and viral production.3 Studies have demonstrated IL-6 may promote virus survival and/or exacerbation of the disease.4 In the context of hepatitis B, men are at an increased risk for HCC as they do not produce estrogen which would help decrease the risk of IL-6, in turn, promoting viral survival.
The great news is that HCC can be prevented by preventing hepatitis B. There is a safe and effective vaccine that can be completed in either 2 or 3 doses over a span of 3 months. Ask your healthcare provider for the hepatitis B vaccine series.
If you are unsure of your hepatitis B status, you can get tested! Ask your healthcare provider for the “Hepatitis B Panel” – it should include 3 parts. The panel is super simple and only requires one sample of blood. If you are of Asian descent and male, it is especially important for you to get tested as liver cancer disproportionately impacts individuals from Asian countries and men.
If you have chronic hepatitis B, make sure your doctor screens you regularly for liver cancer. Typically done with a combination of blood tests and imaging, liver cancer screening can help detect HCC early when it is still curable.
As we wrap up June and Men’s Health Month, you are encouraged to get vaccinated and tested for hepatitis B. Take control of your health, and don’t wait!
June is Pride Month in the United States! This month we celebrate the LGBTQ+ community in honor of the 1969 Stonewall Uprising in Manhattan. This blog post will discuss HIV/HBV coinfection in LGBTQ+ individuals and how to prevent both viruses.
Human Immunodeficiency Virus or HIV disproportionately affects LGBTQ+ individuals, mostly gay and bisexual men. In the United States, approximately 69% of the 37,968 new HIV cases were among gay and bisexual men in 2018. HIV can also impact lesbian women, although the infection rate among this community is lower. There is also very limited current data out about lesbian and bisexual women and the burden of HIV. However, HIV can be transmitted between women who have sex with women through sex toys and injection drug use. The CDC reports 1 million people have identified as transgender in the United States, and 2% of those individuals are affected by HIV.
Approximately 5-20% of the HIV-infected population worldwide is also living with hepatitis B. These rates vary among different regions and at-risk populations based on modes of transmission. This figure may approach 20% in Southeast Asia, and 5% in North America and Western Europe. In the U.S., Western Europe, and Australia, the prevalence of chronic hepatitis B was reported to be 5%-14% among HIV-positive individuals.
Since both HIV and the hepatitis B virus share similar transmission routes, it is not surprising that there is a high frequency of coinfection. Sexual activity and/or injection drug use are the most common routes of transmission of the hepatitis B virus among those also infected with HIV.
You can easily prevent hepatitis B with a safe and effective vaccine. The vaccine comes in either 2 or 3 doses, given over a span of 6 months. Learn more about the vaccine dose schedule here!
If you are not vaccinated for hepatitis B, ask your doctor or primary care provider for the vaccination! Check out this list of LGBTQ+ friendly providers.
If you are unsure of your hepatitis B status, ask your doctor or primary care provider to become tested! The hepatitis B test is super simple – it only requires one blood sample. Your doctor should order the “hepatitis B panel” which includes different tests. Read more hepatitis B testinghere!
You can lower your risk of acquiring HIV by using PrEP (pre-exposure prophylaxis). PrEP is a daily medication you can take to prevent HIV. Just make sure you are tested for hepatitis B before starting PrEP. Read more about PrEPhere!
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.
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 researchers of this study developed an age- and sex-specific discrete model at the population level to evaluate the influence of sexual transmission on HBV infection in China. They found that in 2014, due to sexual transmission, the total number of chronic HBV infections in people aged 0–100 years increased by 292,581 people! That year, due to sexual transmission, there were 189,200 new chronic infections among men and 103,381 new chronic infections among women. In 2006, sexual transmission accounted for 24.76% (male: 31.33%, female: 17.94%) of acute HBV infections in China and in 2014, sexual transmission accounted for 34.59% (male: 42.93%, female: 25.73%) of acute HBV infections in China. These statistics demonstrate that acute HBV infections due to sexual transmission increased by 10% and 8% respectively from 2006-2014.
However, researchers found that if the condom usage rate increased by 10% annually starting in 2019, then compared with current practice, the total number of acute HBV infections from 2019 to 2035 would be reduced by 16.68% (male: 21.49%, female: 11.93%). The HBsAg prevalence in people aged 1–59 years in 2035 would be reduced to 2.01% (male: 2.40%, female: 1.58%).
Prevention and Harm Reduction Strategies During Sex
Practicing safe sex is can be a great way to prevent the transmission of hepatitis B. Condoms are an effective way to prevent the transmission of hepatitis B during intercourse. Sometimes during sex, people like to use personal lubricants. When using condoms it is important to remember to only use silicone or water-based lubricant. Oil-based lubricants increase the chance of ripping or tearing the condom. It is highly recommended if someone is living with hepatitis B to have sex with a condom, however, if you are having sex without a condom, certain sexual activities are far more efficient at spreading hepatitis B than others. Oral sex appears to have a lower rate of hepatitis B transmission than vaginal sex. Anal sex carries a very high risk of transmission because tears in the skin can occur during penetration, allow more transmission routes for the virus.
If you have never been vaccinated for hepatitis B, it is recommended that you receive the vaccination. The hepatitis B vaccine is a safe and effective vaccine that is recommended for all infants at birth and for children up to 18 years. Since everyone is at some risk, all adults should seriously consider getting the hepatitis B vaccine for lifetime protection against preventable chronic liver disease. The hepatitis B vaccine is also known as the first “anti-cancer” vaccine because it prevents hepatitis B, the leading cause of liver cancer worldwide.
If you think you might be at increased risk for hepatitis B infection, is also recommended you get tested for hepatitis B. Hepatitis B is known as the” silent” infection, meaning you could be infected with the virus and not show symptoms that can cause long-term liver damage. If you have not been tested for hepatitis B and would like to know your status, you should get in contact with your primary care provider. Your physician should order a panel of three blood tests for the hepatitis B panel:
HBsAg (hepatitis B surface antigen)
Anti-HBs or HBsAb (hepatitis B surface antibody)
anti-HBc or HBcAb (hepatitis B core antibody)
The results of all 3 blood test results are needed in order to make a diagnosis. Be sure to request a printed copy of your blood tests so that you fully understand which tests are positive or negative, and what your hepatitis B status is.
If you know you have had unprotected sexual intercourse with someone living with hepatitis B, there is something called post-exposure treatment. If an uninfected, unvaccinated person – or anyone who does not know their hepatitis B status – is exposed to the hepatitis B virus through contact with infected blood, a timely “postexposure prophylaxis” (PEP) can prevent infection and subsequent development of chronic infection or liver disease. This means a person should seek immediate medical attention (within 72 hours of exposure) to start the hepatitis B vaccine series. In some circumstances, a drug called “hepatitis B immune globulin” (HBIG) is recommended in addition to the hepatitis B vaccine for added protection.
The hepatitis B virus can cause an acute (lasting less than 6 months) or chronic (lifetime) infection. Chronic infection occurs in 90% of infants infected through mother-to-child transmission at birth; and about 50% of children will develop a chronic infection if exposed to the virus between 1 and 5 years of age. Those infected as adults are much less likely (<5%) to develop a chronic infection. Left untreated, hepatitis B can progress to cirrhosis and other serious liver diseases like liver cancer. This blog will talk about mother-to-child (perinatal) transmission and commonly asked questions about perinatal transmission.
Transmission of Hepatitis B from Mother to Child
Globally, the most common route of transmission is mother-to-child. Some people might think the hepatitis B virus is transmitted genetically, but this is NOT true. Hepatitis B is a virus that can be transmitted from a mother to her child because of the blood exchange that happens during childbirth. The great news is that we can prevent mother-to-child transmission! If a pregnant woman tests positive for hepatitis B infection, then her newborn must be given proper prevention immediately after birth in the delivery room, clinic or bedside:
first dose (called “birth dose”) of the hepatitis B vaccine
one dose of the Hepatitis B Immune Globulin (HBIG).*
*HBIG is recommended by U.S. CDC. HBIG is not recommended by WHO and may not be available in all countries. What is most important is to make sure the hepatitis B vaccine birth dose is given as soon as possible!
If these two medications are given correctly, a newborn born to a mother with hepatitis B has a 95% chance of being protected from a hepatitis B infection. You must make sure your baby receives the remaining shots of the vaccine series according to schedule to ensure complete protection.
And there is more good news – if a pregnant woman with hepatitis B has a high viral load during pregnancy, it is recommended that she take antiviral therapy during her third trimester, which will further reduce the risk of mother-to-child transmission. If you are pregnant and have hepatitis B, talk to your doctor about testing your HBV DNA level, and starting antiviral treatment if it is elevated. There are WHO guidelines for managing hepatitis B infection among pregnant women, which your doctor can use to guide your care.
Commonly Asked Questions About Perinatal Transmission
I am pregnant, should I be tested for hepatitis B?
ALL pregnant women should be tested for hepatitis B. Testing is especially important for women who fall into high-risk groups such as health care workers, women from ethnic communities or countries where hepatitis B is common, spouses or partners living with an infected person, etc. If you are pregnant, be sure your doctor tests you for hepatitis B before your baby is born, ideally as early as possible during the first trimester.
I have hepatitis B and I am pregnant, what should I do?
You already know your hepatitis B status – this is a great first step! The next thing you should do is tell your medical provider who should perform additional laboratory testing, including HBV DNA level (viral load), and should check to see if there is evidence of cirrhosis.
All pregnant women who are diagnosed with hepatitis B should be referred to care with a knowledgeable doctor. Some may require continued treatment with an antiviral, many will not. All women with hepatitis B need regular monitoring throughout their life since hepatitis B infection and the health of the liver can change over time.
Can I transmit hepatitis B to my baby when I am breastfeeding?
*Especially if your baby has received the hepatitis B vaccine birth dose, the benefits of breastfeeding outweigh any potential risk.*
Can I prevent my baby from contracting hepatitis B?
Yes! In all cases, it is very important that your obstetrician (or provider who will be delivering your baby), and your newborn’s pediatrician, are aware of your hepatitis B status to ensure that your newborn receives the proper vaccines at birth to prevent a lifelong hepatitis B infection and that you receive appropriate follow-up care.
Should I continue to see a doctor after I give birth?
Yes! Women who have hepatitis B should be closely monitored for 6 months after delivery whether they have been prescribed antivirals are not. This will ensure there are no dangerous elevations in liver enzymes, which can indicate liver damage (ALT flares). For most women whose follow-up testing shows no signs of active disease or cirrhosis, your physician will recommend regular monitoring with a liver specialist (hepatologist) or doctor with experience managing the care of people with hepatitis B.
World Health Organization Recommendations
In 2020, The World Health Organization released two new recommendations for the prevention of mother-to-child transmission of hepatitis B.
In addition to the series of hepatitis B vaccinations (including the first dose within 24 hours of birth), WHO now recommends that pregnant women testing positive for HBV infection (HBsAg positive) with an HBV DNA viral load threshold of ≥5.3 log10 IU/mL (≥200,000 IU/mL) receive tenofovir prophylaxis; the preventive therapy should be provided from the 28th week of pregnancy until at least birth.
In settings where HBV DNA testing is not available, WHO now recommends the use of HBeAg testing as an alternative to determine eligibility for tenofovir prophylaxis for the prevention of mother-to-child transmission of HBV This is because some settings have poor access to tests that quantify an individual’s HBV viral load and determine whether a pregnant woman would be eligible for preventive treatment or prophylaxis. This is especially the case in low-income settings or rural areas where many antenatal care visits take place.
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!
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!