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!
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
If you have chronic hepatitis B or are newly diagnosed, it’s important to see a medical provider who has experience managing and treating hepatitis B.
Having a medical provider with hepatitis B expertise on your team not only safeguards your health but also lessens the stress of having a chronic liver disease. “My specialist gave me all the possible scenarios, but most importantly, he gave me my life back,” one hepatitis B patient recalled.
When first diagnosed, it’s often a primary health provider (PCP) or for children a pediatrician who orders diagnostic tests for hepatitis B. Doctors may run additional blood tests and/or immediately refer you to a liver specialist. If your PCP has experience managing and treating hepatitis B, you may decide to continue your hepatitis B care with that provider. Or, they may recommend a specialist who accepts your insurance or practices in the same healthcare system. But, you may have to do some research to find the best specialist to treat your hepatitis B.
There are two types of specialists who treat liver diseases:
A gastroenterologist is an internist who has trained in digestive disorders including the liver, but how much liver expertise a gastroenterologist (GI doctor) has varies based on their training. It’s important to find out if they specialize in liver diseases and if they have experience with hepatitis B.
A hepatologist is a physician who specializes in the liver. This doctor has the most expertise and should be up-to-date about new treatments and clinical trials. But not all hepatologists have treated hepatitis B. Many will have treated hepatitis C, but not hepatitis B, so you need to ask.
Tips for finding a specialist:
Are they in the Hepatitis B Foundation directory? The Foundation has a Physician Directory of medical providers who treat hepatitis B around the world. These doctors have voluntarily signed upto be included in the database. It is not an exhaustive list, there may be hepatitis B specialists in your area who have not yet joined the directory.
Call the practice ahead of time and ask questions. How many hepatitis B patients have they treated? Do they participate in any clinical trials? Are they aware of current monitoring and treatment guidelines for hepatitis B?
What’s the doctor’s reputation? Does anyone in your community see a liver specialist for viral hepatitis? Whom do they recommend?
Will you actually see the specialist or an assistant? Do you see a specialist only if there is a need for treatment? If you go to a teaching hospital, do you see the doctor or an intern, fellow or resident?
You are entering into a long-term relationship with someone who may care for you for many years. You need their expertise, but you also need to feel comfortable working with them. Do they listen when you speak and make eye contact? Trust and rapport are very critical.
“It’s really important that they don’t judge me,” one hepatitis B patient explained. Another patient said that finding a doctor who spoke his language, or had an assistant who was fluent in his language, helped immensely.
Once you identify a specialist, here are some questions to ask:
Is the specialist accepting new patients? How long do you have to wait to get an appointment?
What hospital or lab do they use, and are they convenient for you? It’s important for you to always use the same lab so you have consistent results that allow apples-to-apples comparisons.
Will the doctor call you with the results or will a nurse or other assistants communicate with you?
What would you like your care plan to be? Will you go for blood tests and then see the specialist? Typically, hepatitis B patients get blood tests once or twice a year to monitor their liver, unless they are undergoing treatment.
How to design a long-distance care plan if the specialist is far away: Sometimes, the best hepatitis B specialist is a few hours drive from where you live, but distance doesn’t have to be a deal-breaker. Many people see a specialist for a first visit, and afterwards, simply have their PCPs or local labs email lab results to the specialist. For this remote healthcare relationship to work, your PCP needs to be willing to partner with the specialist. Also, your specialist needs to be open to telephone or video consultations with you as needed.
Technology matters. Sharing medical records and lab tests electronically make a remote relationship work smoothly. If there are firewalls between practices, find out how to ensure your PCP and specialist share your medical records. Be prepared, you may have to be the conduit if the two healthcare systems don’t talk to each other.
Insurance and cost: Ideally, the hepatitis B specialist closest to you accepts your insurance or is in your provider network. That doesn’t always happen so finding out the charges in advance is important.
Will the specialist bill your insurance or will you need to pay the fee upfront and manage the insurance reimbursement yourself?
How much do you have to pay out-of-pocket if the specialist is outside your network, or if you are not insured? Some specialists charge a lower fee to uninsured patients. You may be able to have an annual consultation with a specialist and bring your lab results.
One hepatitis B patient reported he was not entirely happy with the specialist his PCP referred him to. “At the time, I had great insurance so all the tests he ordered weren’t a lot of money out-of-pocket,” he said. “But then I changed jobs and I couldn’t afford all of his tests, and he wanted me to go on treatment though my lab reports didn’t justify it.
“I went looking for a new one and found one in the Hepatitis B Foundation’s website,” he said. “I had to drive farther to see him, but his knowledge and patience were very comforting and he spoke my primary language. He really helped me regain confidence in life.”
Prepare for your visit: Before you see your hepatitis B medical provider, put together a list of questions (see sample questions) and have your lab reports available — either bring hard copies or call ahead of time to make sure the doctor has access to your latest labs and medical records.
After you meet with your specialist, take some time to reflect. Are you happy with the doctor? Did he or she communicate well? Are you clear about what you need to do in the weeks and months ahead to take charge of your health? If the answer is yes, congratulations, you have assembled a good healthcare team.
Every year, April 7 marks World Health Day. During the 1948 First Health Assembly, the World Health Organization (WHO) developed this day “to create awareness of a specific health theme to highlight a priority area of concern for the WHO.” Since 1950, World Health Day has been drawing attention to specific health concerns affecting people all over the world, such as mental health, maternal and child care, and climate change. It is celebrated through activities, which extended beyond the day itself, and aids in focusing worldwide attention to global health features.
This year, World Health Day will focus on “building a fairer, healthier world for everyone.” With the COVID-19 pandemic undermining recent health gains, people have been experiencing poverty, food insecurity as well as increased inequities in areas, such as gender, social and health. The WHO has developed a year-long campaign as a call to action to eliminate inequities.
All over the world, people are struggling to earn a living. Poor housing conditions, lack of education and employment opportunities render vulnerable populations to experience inequalities to clean and safe food, air, water and health services. Consequently, more than 1 billion people living in informal or poorly built settlements face increased challenges to preventing infection and transmission of contagious diseases. According to WHO, the burden of disease is greatest in low to middle-income countries, specifically in Africa, South East Asia, Eastern Mediterranean, and Western Pacific regions. With approximately 50% of people living with chronic hepatitis B coming from Asian, Pacific Islander, or African descent, the issue of inequitable access to care becomes a problem for managing hepatitis B. Hepatitis B and the resulting liver cancer are amongst the largest health disparities for these groups. The World Health Day campaign will not only bring a fairer and healthier world to everyone, but it will also work to improve access to care, so people affected by hepatitis B can receive quality treatment and care and reduce their risk for liver cancer.
Join the Campaign to Reduce Inequities
Contact your local community leaders and policymakers who are at the forefront in making decisions that will affect your community’s future. Make it known that everyone has the right to safe living and working conditions that are conducive to good health.
Encourage leaders to monitor health inequities and ensure that people have access to quality health services. Hepatitis B management is essential for preventing the formation and development of long-term complications, such as cirrhosis and liver cancer. In communities most affected by the pandemic, individuals affected by hepatitis B will be at greater risk for experiencing adverse consequences.
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.
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 firstname.lastname@example.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.
Saturday, March 20th, marks International Day of Happiness! The United Nations established this day to recognize “the need for a more inclusive, equitable, and balanced approach to economic growth that promotes sustainable development, poverty eradication, happiness, and the well-being of all peoples.” In 2015, the United Nations launched the Sustainable Development Goals which seek to end poverty, reduce inequalities, and protect our planet which all leads to well-being and happiness.
Action Items to Celebrate International Day of Happiness
Celebrate Health and Happiness –
Share a meal with family and friends today! It might not be the best idea to gather in-person during a global pandemic, but you can do this virtually over Zoom or another video sharing platform like Google hangouts or Facetime. Virtually surround yourself with the people you love by sharing a liver-friendly meal. A liver-friendly meal should include lean proteins, fruits and vegetables, and less processed foods. If you plan to gather in-person, a socially-distant meal is recommended. For example, you can use outdoor spaces like parks or backyards to gather and sit an appropriate distance away from each other.
Mental health is just as important as physical health. Research studies have found people living with hepatitis B experience higher rates of depression and anxiety than the general population. This comes as no surprise as there is no cure (although scientists are tiredessly working hard to find one), people with hepatitis B face stigma and discrimination, and when people disclose we risk facing rejection from our peers, friends, and family. But International Day of Happiness does not focus on that. Instead, we will focus on the things, activities, and people who make you happy! This could be taking a walk in the park, baking or cooking for your family, gardening, or crafting. Being mindful and taking time for yourself to do the thing you enjoy about life is important for your happiness. We know a hepatitis B diagnosis does not define you nor defines your happiness. If you want to share want makes you happy, you can through our new campaign, More Than B! Check it out here.
Reduce Inequalities –
Please join the Hepatitis B Foundation in calling upon all companies developing COVID-19 vaccines to include people living with hepatitis B and liver disease in their clinical trials, and to make the resulting sub-group data publicly available. The inclusion of these groups in clinical trials will help improve access to approved vaccines and will broaden trust and acceptance of the vaccines, especially among those who are unsure if they should receive any COVID-19 vaccine. We must account for groups who may be more susceptible to severe illness from the coronavirus. Data is one of the most powerful tools we have to build vaccine confidence amongst vulnerable populations, and one we must fully utilize in order to earn the trust of concerned communities. We must ensure that the voices of the 300 million people around the world who are living with hepatitis B are not forgotten. Add your voice here!
What better way to celebrate than to learn more about your own and your family’s health and to contribute to better health and well-being for your whole community, both now and in the future? The All of Us Research Program is working to make health and medical research more diverse, inclusive, and representative of the actual population in the United States, so that doctors can move toward precision medicine and away from making diagnosis and treatment decisions based on an “average” patient. Participation is especially important for Asian, Pacific Islander, and other community members, who are the least represented. By enrolling in the study, you can get information about your own health and genetics, help move science forward, and even play a role in guiding the research itself! The program holds itself to the highest standards of confidentiality and you can stop participating at any time. Help make the world a healthier and happier place! Learn more and sign up at www.joinallofus.org.
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.”
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!