Hep B Blog

Category Archives: Living with Hepatitis B

Pregnancy and Hepatitis B

 

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?

The U.S. Centers for Disease Control and Prevention (CDC) and World Health Organization (WHO) recommend that all women with hepatitis B should be encouraged to breastfeed their newborns.  

*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.

  1. 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.
  2. 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.

Author: Evangeline Wang

Contact Information: info@hep.org

New Year’s Resolutions and Hepatitis B

 

2020 was a difficult year for most of us. The coronavirus pandemic challenged us professionally, personally and could have led to financial hardship or strained relationships. 2021 ushers in a new year of resilience and resolutions. 

If you are living with chronic hepatitis B, you may feel as though you are not in control of your health, but that’s not true! Small changes to your daily life can go a long way towards improving your liver health and may even prevent liver damage from occurring. Here are four New Year’s resolutions to help you start 2021 off right!

Kick Your Old Habits to the Curb: Did you know that not only does smoking hurt your lungs, it also negatively impacts your liver? Old habits can be hard to break, but staying healthy is important. Smoking cessation can be hard! Instead of going cold turkey, maybe reduce your cigarette intake from smoking every day to every other day and work your way up to complete cessation. Did you know that insurance plans in the United States must cover smoking cessation programs through preventive care under the Affordable Care Act? This means that copayments and coinsurance can’t be applied to these programs. Taking the first step is better for your liver and your wallet!

Cook More: As you decrease your smoking intake, increase your cooking habits! Cooking can be a lot of work, but it can also be fun. Regularly eating fast-food and highly processed meals are bad for your liver and can leave you feeling lethargic, so try switching things up. Consider signing up for a virtual cooking class with your friends or family to learn some new tricks in the kitchen. You don’t have to make every meal from scratch; start by making one or two fresh meals a week and increase them as you feel more confident. Don’t know where to start? Try one of these recipes – desserts included!  There is no standard diet for chronic hepatitis B patients, but the American Cancer Society’s low fat, low cholesterol, and high fiber meal ideas are a good, general diet to follow.

Take Some Time For Yourself: Stress is bad for every part of your body – including the liver – so it is important to take some time for yourself. Set a few hours aside each week to do an activity that you enjoy. You can take up journaling, practice mindfulness, or go on a quick walk to help relieve stress – whatever relaxing activity feels right for you. If you have the resources, you may want to consider planning a vacation or taking a small weekend trip. Even if you can’t get away, set a goal to spend more time outdoors. Green spaces, such as an urban park or a forest, have been known to lower stress levels and can help manage weight, which is an important part of maintaining liver health.

Get Active: Exercising more might be one of the most common New Year’s resolutions, but it is also one of the most important ones! If you’re tired of going to the gym or bored with your old routine, try your hand at an exercise you hadn’t considered before. Yoga, pilates, running, and kickboxing are just a few examples of fun workouts that you can add to your exercise catalog and can be done outside of a typical gym setting. If you’re looking for affordable exercise options, be sure to check out some of the free exercise videos you can find on YouTube. You can also try hiking at your local park or joining a local community center!

New Year’s resolutions can be difficult to keep, especially if you are trying to do them all at once. The important part is to begin! If you are having trouble meeting your goals, pick one to start with and add another goal once it becomes a part of your routine.

 

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

Hepatitis B in Asian Populations

In the United States, an estimated 2.2 million people are living with chronic hepatitis B infection and most do not know they have it. Without diagnosis and treatment, 1 in 4 persons will develop cirrhosis or liver cancer. Hepatitis B is associated with significant health disparities, disproportionately impacting Asian American, Pacific Islander, and African immigrant communities. Asian Americans and Pacific Islanders make up 50% of the hepatitis B infection burden in the United States and have liver cancer rates that are up to 13 times higher than Caucasian populations despite making up 6% of the United States’ population.

Why are People of Asian Descent Disproportionately Affected?

 First-generation Asians from China, Korea, Vietnam, and those from the Pacific Islands are particularly highly impacted by hepatitis B due to the history of the virus (the virus has been circulating in certain areas of the world for thousands of years), as well as historically low infant immunization rates against the disease in many countries. Most Asians and Pacific Islanders who have hepatitis B were infected during childbirth from their mothers who were infected – that is why it is common to see multiple members of the same family affected by hepatitis B.

The great news is that the birth dose of the hepatitis B vaccine has been increasing in uptake in Asian countries. The Centers for Disease Control and Prevention (CDC) reported in the South East Asian Region that the hepatitis B vaccine birth dose and third dose coverage increased from 34% to 54% and from 89% to 91%, respectively. In 2019, nine of 11 countries in the region achieved ≥90% of the hepatitis B vaccine third dose coverage nationally, and three of eight countries that provide the hepatitis B birth-dose achieved ≥90% coverage.1 This great news comes with the World Health Organization announcing cases of hepatitis B in children under age five had dropped below 1% in 2019 which can be attributed to the increased uptake in vaccinations.2

Are You at Risk for Hepatitis B?

If you are interested in knowing if you are at risk for hepatitis B, this half-page questionnaire is a quick and easy assessment to determine if you should be tested for hepatitis B. The assessment is available in English, Chinese, Vietnamese, Korean, Burmese, Hmong, Khmer, and Lao. Download the risk assessment here.

For more information about the Know Hepatitis B Campaign, visit the campaign website.

References

  1. The Centers for Disease Control and Prevention
  2. The World Health Organization

 

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

Holidays and Hepatitis B: Treat Your Liver Right

 

 

The holiday season is here! November and December are full with holidays like Diwali, Canadian Thanksgiving, American Thanksgiving, Hanukkah, Kwanzaa, Christmas, and the New Year just to name a few. This time is often filled with love, happiness, and delicious food. If you or a family member is living with hepatitis B, it is important to eat mindfully during this festive time. Eating healthy is not always a possible option – not with delicious smells filling your kitchen, but you can make healthier choices! Here is a list of action items you can do to help maintain a healthy liver during the holidays:

  1. You can contribute a healthy dish – something filled with lean meats, hearty vegetables,  and is low in sodium.
  2. Try your best to avoid alcohol and go for drinks with lower amounts of added sugar.
    • Coffee has been associated with improvement in liver enzymes!
    • You can bring your own non-alcoholic beverage like a sparkling flavored drink.
  3. Choose fiber-rich foods like beets, Brussels sprouts, broccoli, and beans – your plate should look colorful!
    • Click on the veggies for some delicious and healthy recipes!
  4. Stay active – take a walk with your family/someone in your COVID social circle or do a free online exercise video.

Most importantly, do not feel guilty. Try your best to make healthy choices and not over-indulge, but do not beat yourself up if you do – your next meal can be healthier!

Remember that everything you consume is filtered through your liver; your liver never gets a break! The lifestyle tips listed above may seem simple, but they can have a large, positive impact on your health. Sticking to a regular healthy routine even during the holiday season will make it easier to continue those habits all year long! You can also check out our healthy liver tips to see what other actions can be taken to protect your liver.

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

Adoption and Hepatitis B

 

November is National Adoption Month! National Adoption Month’s ultimate goal is to increase national awareness of the need for permanent families for children and youth in the U.S. foster care system. Most importantly, this month acknowledges the birth families who make the difficult decision to give up their children for adoption, the foster families who care for children from various backgrounds, and the adoptive families who love and care for their adoptive children.

Adoption and Hepatitis B

 Many people wish to adopt children from countries where hepatitis B infections are common: Asia, South America, Eastern Europe, and some parts of Africa. Children from these regions are often infected with the virus from their birth mothers who have hepatitis B and unknowingly pass the disease on to their children during delivery. In addition, many of these countries re-use needles for medications or blood tests, a practice that places children at risk if they have not already been infected at birth. It is advised that you do not request your child to be tested for hepatitis B in their birth country, since the blood test itself could be a source of infection.

Domestic adoptions also present some risk to potential adoptees. Children born to women in high-risk groups could have been infected with hepatitis B at birth. In addition, children from group homes are at increased risk for hepatitis B infection.

Many children who have hepatitis B do not have symptoms of the viral infection. This makes it difficult for adoptive parents to know their child is sick without a blood test! This simple 3-part blood panel will inform you if your child has an active infection, had a previous infection and recovered, has “immunity”, or needs a vaccine. The good news is that your adoption agency should be able to tell you if a child has been tested for hepatitis B. If you have questions or concerns about the test results please contact us to speak with our knowledgeable staff. We can also refer you to a parent who has adopted a child with hepatitis B.

Finding out that the child you wish to adopt has chronic hepatitis B can be upsetting, but should not be cause for alarm or stopping an adoption. We hope that a hepatitis B diagnosis will not change your decision to adopt a child. You can be reassured that most children with hepatitis B will enjoy a long and healthy life. Hepatitis B does not usually affect a child’s normal growth and development, and there are generally no physical disabilities or restrictions associated with this diagnosis.

Reference

https://www.hepb.org/treatment-and-management/children-with-hepatitis-b/adoption/

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

Hepatitis B and Stigma

 

Hepatitis B and Stigma

World Kindness Day is just around the corner on November 13th. On World Kindness Day, we celebrate kindness and spread it around the world. Let’s celebrate this day by treating people living with hepatitis B with kindness, compassion, and respect.

Unfortunately, hepatitis B is often highly stigmatized – and the people living with it can feel ostracized. Why is there so much stigma surrounding hepatitis B? A study found that among Asians, the majority thought hepatitis B was a genetic disease which is why the family might feel stigmatized if a family member is living with it.1 Due to cultural values, interdependence, collectivism, and family centeredness, persons of Asian descent might think that having hepatitis B is a reflection on the family.1 This attitude could lead to people not wanting to get tested for hepatitis B because they worry about bringing stigma to the family.1 Another study found that among African communities, individuals were confused about the differences between hepatitis B, HIV, malaria, and other infectious diseases.2 This misattribution and confusion could lead to a person living with hepatitis B being perceived as an outsider to society and can cause stigma or discrimination.2

The studies demonstrate that the lack of education and information surrounding hepatitis B contributes to the stigma that individuals living with hepatitis B face. There is a lot of ignorance, myths, and misconceptions about hepatitis B. Let’s debunk some of these notions!

Hepatitis B cannot be spread through casual contact, only through blood-to-blood contact or sexual transmission. This means you can hug, kiss, and share a meal with your friends and family without worrying about contracting hepatitis B. In Asian communities, it is especially important to emphasize that family members living with an individual who has hepatitis B, can share meals with each other. And there is a safe and effective vaccine to protect loved ones – so transmission can be prevented!

Sometimes people do not want to discuss their hepatitis B status because of its association with intravenous drug use. People who inject drugs experience more discrimination because of the stigma surrounding addiction. On the flip side, individuals who do not inject drugs but are living with hepatitis B, might not want to discuss their status for fear that other people will stigmatize or label them as drug users. Additionally, people might assume individuals living with hepatitis B engage in risky sexual behavior which can further stigmatize them. This stigmatization only harms people living with hepatitis B because they cannot talk about their status openly, which would help destigmatize the disease.

Even extending past World Kindness Day, we encourage you to be kind to people living with hepatitis B. And if you are living with hepatitis B, please be kind to yourself! Continue to educate yourselves on hepatitis B to help lessen the stigma and discrimination surrounding it.

Below is a brief list of resources for people living with hepatitis B or individuals living with people living with hepatitis B.

  1. Transmission of hepatitis B – how hepatitis B can be transmitted
  2. Online Support Groups
  3. Factsheet – When Someone in the Family has Hepatitis B
  4. Know Your Rights – for anyone experiencing discrimination because of their hepatitis B status

References

  1. Kim, M. J., Lee, H., Kiang, P., Watanabe, P., Torres, M. I., Halon, P., Shi, L., & Church, D. R. (2015). Debunking the myth: low knowledge levels of HBV infection among Asian American college students. Asia-Pacific journal of oncology nursing, 2(1), 8–16. https://doi.org/10.4103/2347-5625.152399
  2. Mokaya, J., McNaughton, A. L., Burbridge, L., Maponga, T., O’Hara, G., Andersson, M., Seeley, J., & Matthews, P. C. (2018). A blind spot? Confronting the stigma of hepatitis B virus (HBV) infection – A systematic review. Wellcome open research, 3, 29. https://doi.org/10.12688/wellcomeopenres.14273.2

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

National Family Caregivers Month and Hepatitis B

November is National Family Caregivers Month! There are over 40 million Americans who are unpaid caregivers to their families, friends, and neighbors1. This month we celebrate and support all the caregivers who work tirelessly to keep our family and communities strong.

Caregivers and Hepatitis B

 Caregiving can be a tough, but noble job. It is often unpaid, long hours, and can cause burnout. However, caregivers selflessly work to provide their friends or family with the best care possible. Hepatitis B just does not affect the person living with the virus; it affects their family, friends, coworkers, and community members. Someone who lives with an individual who has hepatitis B might be put in a caregiver position.

Caring for an individual living with hepatitis B might be difficult if the person has advanced liver disease or is experiencing side effects from medication. While it may not always be physically demanding, caring for a person with hepatitis B can be emotionally overwhelming. Caring for an individual living with hepatitis B and other related complications can stir up heavy emotions which can take a toll on a caregiver’s mental health. Managing medications, diet, and healthy lifestyle for people living with hepatitis B during the COVID-19 pandemic can especially feel stressful. Luckily, there are resources available to help reduce feelings of stress and being overwhelmed.

Resources for Caregivers

Feeling stressed or overwhelmed with taking care of your friend or family member? It is also important to look after your own physical and mental health. Check out these resources from the How Right Now Initiative to help you manage your stress especially during COVID-19. Some suggestions include:

  1. Go for a quick walk or stretch
  2. Call, text, or video chat with friends or family
  3. Take several deep breaths

Does someone in your close circle have hepatitis B? Check out the Centers For Disease Control and Prevention’s Know Hepatitis B Campaign’s fact sheet, When Someone in the Family has Hepatitis B”. This fact sheet has basic information about hepatitis B and the importance of testing and vaccinating family members. The fact sheet is available in 13 Asian and African languages as well as three English versions focused on Asian American, Native Hawaiian and Pacific Islander, and African Immigrant communities. Download the fact sheet here.

For more information about the Know Hepatitis B Campaign, visit the campaign website.

References

  1. https://www.whitehouse.gov/presidential-actions/proclamation-national-family-caregivers-month-2020/
  2. How Right Now Initiative
  3. CDC’s Know Hepatitis B Campaign

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

Announcing the New Current Patient Opportunities Page on the HBF Website

A new page has been created on the Hepatitis B Foundation’s website that contains a compilation of various opportunities available for people living with hepatitis B. These opportunities can be for clinical trials, other types of research, or toolkits with information and resources for those living with hepatitis B and their loved ones and community members. All of these postings are produced or organized by entities external to HBF, but all are related to improved quality of life and liver health. The first two of these opportunities are listed below.

New Tool from CME Outfitters

A new HBV Patient Education Hub has been compiled by continuing medical education company CME Outfitters. The hub includes a great deal of valuable information, such as an overview of hepatitis B, a list of questions to ask your healthcare provider, a patient guide, information about hepatitis B co-infection, doctors’ advice on what to expect from treatment, and many other resources. All information is in an engaging and accessible format. Check it out today!

New Study Opportunity Available for People Living with Itching (Cholestatic Pruritus) Due to Liver Disease or Injury

A new paid opportunity has become available for those experiencing itching caused by hepatitis B, hepatitis C, drug-induced liver injury, auto-immune hepatitis, or primary sclerosing cholangitis (PSC). If you live in Canada or the US and have this condition, you may be eligible to participate in an interview to help researchers better understand your lived experience. The new research study is seeking participants ages 12-80 living in the US and Canada who are living with this itch. This is an opportunity to be involved in research and help advance scientific understanding! Contact the research coordinator for more information and to check if you are eligible. 

Please note that this study does not include treatment and pruritus must be at an intensity level of 4 on a scale of 1-10 for at least the past 8 weeks in order to participate. Patients cannot be pregnant or breastfeeding or have a diagnosis of primary biliary cholangitis. 

We are very excited to unveil this new section of our website and hope it will be a useful resource for many going forward! Please check back often, as more opportunities will be posted as they arise.

Hepatitis B and Discrimination of Health Care Students

Hepatitis B and Discrimination of Health Care Students

Hepatitis B virus (HBV) infection affects more than 290 million persons globally and up to 2.2 million persons in the United States. Living with hepatitis B can mean living with stigma and facing discrimination. Stigma related to hepatitis B is often caused by low awareness​ from the general public and health care providers. Low awareness can lead to fear and misconceptions about the disease. Discriminatory practices that affect health care students with hepatitis B infection may include unjustified denial of school admission or enrollment, restriction of clinical training, or dismissal from an academic program. Given substantial progress in hepatitis B research and treatment in recent decades, it is important to address discriminatory policies that affect health care students.

Kate Moraras, Deputy Director of Public Health at the Hepatitis B Foundation led a research project which found that 36 accredited health care programs in Pennsylvania (43%) had policies which appear to be discriminatory against students living with hepatitis B. These policies included requiring proof of hepatitis B immunity for enrollment or program completion. Failure to produce proof could result in revocation of program admission or not being allowed to enter clinical rotations. This is problematic because the Americans with Disabilities Act (ADA) protects individuals living with hepatitis B. The Department of Justice (DOJ) states that there is no lawful basis for excluding persons living with hepatitis B from health profession schools. Not only does the DOJ protect individuals living with hepatitis B, but the Centers for Disease Control and Prevention (CDC)  states that health care students with hepatitis B pose no risk to patients and should not be limited in their health care education. The CDC recommends that health care students should not be arbitrarily excluded or restricted from activities that could impede practice or studies. They additionally recommend hepatitis B testing only for healthcare providers at increased risk of infection or conducting invasive, exposure-prone procedures and most health care students are not participating in these invasive procedures. If you want to know what to do if you are facing discrimination visit the Know Your Rights section of our website.

 Resources

Please join Hep Free Hawai’i, ACLU Hawai’i, the National Task Force on Hepatitis B: Focus on AAPIs, Hep B United, and Hepatitis B Foundation on October 15th at 6PM ET to address hepatitis B discrimination among health care students. Dr. Chari Cohen, Senior Vice President of the Hepatitis B Foundation and Taylor Mangan, University of California President’s Public Service Law Fellow at ACLU Hawai’i will discuss hepatitis B related institutional discrimination against health care students, current protections and recommendations in place to protect health care students from discrimination. Register here.

The Hepatitis B Foundation’s website has an entire page focused on the rights of individuals living with hepatitis B. Check it out each section:

Reference

 

Moraras, K., Block, J., Shiroma, N., Cannizzo, A., & Cohen, C. (2020). Protecting the Rights of Health Care Students Living With Hepatitis B Under the Americans With Disabilities Act. Public Health Reports, 135(1_suppl), 13S-18S. https://doi.org/10.1177/0033354920921252

Author: Evangeline Wang, Program Coordinator, Hepatitis B Foundation

Contact Information: info@hepb.org

Recap of NAIRHHA Day 2020 Celebration

 

 

 

 

By Beatrice Zovich

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!