Being diagnosed with hepatitis B can be scary and maybe you feel like you can’t tell anyone, but you are not alone. Living with hepatitis B is more common than you think, about 300 million people are living with hepatitis B worldwide! You might be wondering how could this happened to me?
Did you know that hepatitis B is an ancient virus? It has been around for thousands of years, is most common in Africa, Asia, and the Western Pacific. And transmission of the virus is almost always from mother-to-child, due to the blood exchange during labor and delivery. Most people with chronic hepatitis B infection were infected at birth or during early childhood. There are other, less common ways hepatitis B can be transmitted through unsterile medical or dental equipment, unprotected sex, or unsterile needles.
Feeling Sad After Your Hepatitis B Diagnosis?
Sometimes after our diagnosis, we might feel overwhelmed with emotions. These emotions could be anger, sadness, anxiousness, numbness, or maybe a combination of everything. It never hurts to ask someone for some help. Consider going to a therapist. Talking to a therapist, especially if you’ve always kept your hepatitis B a secret, can help you get a better handle on your hepatitis B diagnosis. It can be freeing to talk to another person and have them support you on your emotional and physical health journey. If you don’t have access to a therapist or prefer to be more anonymous, you can join online support groups. Hep B Community is a great resource if you are in need of online global support – they are dedicated to connecting people affected by hepatitis B with each other and with verified experts in the field, who provide trustworthy and accurate advice.
You can also incorporate healthy habits into your lifestyle like taking daily walks, mediation, or incorporating any exercise you enjoy. Eating healthy, with lots of fruits and vegetables can make you feel better inside as well!
Can I Take Anti-Depressants with Medication for Hepatitis B?
Sometimes, if we have persistent sadness for a long time it can be diagnosed as depression. Luckily, depression can be treated with medication called antidepressants. Antidepressants generally do not harm the liver, unless you have severe, pre-existing liver damage (such as cirrhosis), are older, or are taking several medications at once.
According to research, about 0.5 percent to 3 percent of those taking antidepressants may develop very mild elevation in their liver enzymes (called ALT or SGPT), which indicate mild liver damage. It is a good idea to talk to your doctor about this. If you already have liver damage, or you/your doctor are concerned, your doctor can monitor your ALT/SGPT levels more frequently than usual during your first weeks of antidepressant treatment, especially if your ALT/SGPT level is already elevated.
The antidepressants that may cause the highest risk of moderate liver damage, include monoamine oxidase (MAO) inhibitors, tricyclic/tetracyclic antidepressants, nefazodone, bupropion (Wellbutrin, also used for ADD and smoking cessation), duloxetine and agomelatine.Drugs with lower risk of causing liver damage include citalopram, escitalopram, paroxetine (Paxil) and fluvoxamine.
Among the most common antidepressants used today is fluoxetine (Prozac). According to the National Institutes of Health LiverTox report, in people with no pre-existing liver infections or damage, “Liver test abnormalities have been reported to occur rarely in patients on fluoxetine (less than 1 percent), and elevations (in ALT/SGPT) are usually modest and usually do not require dose modification or discontinuation.”
Feeling sad and depressed is normal reaction to receiving news that you have hepatitis B. However, hepatitis B does NOT define you and a gentle reminder is that you can live a long and healthy life with hepatitis B.
Every year, UNAIDS marks March 1st as Zero Discrimination Day. This year, Zero Discrimination Day highlights “the urgent need to take action to end the inequalities surrounding income, sex, age, health status, occupation, disability, sexual orientation, drug use, gender identity, race, class, ethnicity and religion that continue to persist around the world”.
Although hepatitis B affects about 300 million people worldwide, hepatitis B related discrimination still is pervasive. In fact, the Hepatitis B Foundation has been documenting these inequalities through our Discrimination Registry. Since May of 2021, we have documented over 250 cases of hepatitis B related discrimination from all over the globe. Of these cases, 213 individuals experienced discrimination personally and 151 knew of people who were discriminated against. Within these reports, people have described instances where they have been denied employment or lost employment due to their hepatitis B status or had been denied educational opportunities or immigration to another country. The top 10 countries where people have reported hepatitis B related discrimination are the Philippines, Nigeria, India, Pakistan, United States, Ghana, Uganda, Ethiopia, Bangladesh, and Sierra Leone. The Hepatitis B Foundation is aware that discrimination is happening around the world and encourages people to report any discrimination on the registry here.
Notably, the United States is in the top 10 countries where people have reported hepatitis B discrimination. Most of the reporting within the United States comes from individuals in the military living with hepatitis B. Currently, the military in the United States and many countries unethically prohibits individuals with hepatitis B to serve due to outdated guidelines. Now, since most individuals within the military setting should be vaccinated against hepatitis B and with the accessibility of hepatitis B antiviral therapy which can control the virus, the risk of transmission is extremely low. These guidelines should be updated to reflect national policies in the United States that prohibit discrimination. In the broader setting of the U.S. outside of the military, it is illegal to discriminate against people living with hepatitis B. The Americans with Disabilities Act (ADA) prevents employers, institutions, and other organizations from discriminating against an individual based on their hepatitis B status. The Hepatitis B Foundation hopes to one day end hepatitis B related discrimination not only in the United States, but also globally.
Ending hepatitis B related discrimination globally will require incredible effort from multiple partners like governments, organizations, community advocates, and people living with hepatitis B. The first step is demonstrating that discrimination is a serious issue around the world that impacts one’s life in a variety of ways, both economically and psychologically. The discrimination registry that we launched in 2021 will help us document discrimination around the world and help us determine areas of focus. We want to publish and share what we find from this registry so academic partners, policy leaders, advocates and health professionals can be made aware of the current situation and challenges people living with hepatitis B face. We hope to maintain this registry so we can assist people experiencing hepatitis B related discrimination. And we want to create a global movement to enact change, advocating for ending policy and practice that allows for discrimination, and instituting policies that protect people with hepatitis B worldwide. But we need your help – people living with hepatitis B, and people who have faced discrimination, are the most important partners in this effort! We need you as partners, to maintain the registry and fight hepatitis B related discrimination, and ensure the fight for equality continues. We are currently fundraising to keep the Discrimination Registry going and expand on these plans to help fight discrimination globally.
This fight against discrimination will take some time! Change does not happen overnight. Improving awareness, growing an advocacy movement, engaging leaders and decision makers, and especially changing policy, can take years – but we must continue our work together. The Hepatitis B Foundation has long been dedicated to assisting in discrimination related causes. In fact, the Hepatitis B Foundation played a key role in a landmark settlement by the U.S. Department of Justice that established protection for people with hepatitis B under the Americans with Disabilities Act (ADA). That effort took three years to see policy change once we took up the fight, but it was worth it to have protections in place for people with hepatitis B. Learn more in our Know Your Rights section.
On Zero Discrimination Day, March 1st, and moving forward, please continue to use your voice to speak out against discrimination. If you need assistance please fill out the Discrimination Registry to document your experience and the Hepatitis B Foundation will try its best to assist you and navigate you through it.
2022 is shaping up to be a big year for hepatitis delta, the rare but serious virus that can co-infect people who are already living with hepatitis B. As a quick refresher, hepatitis delta is a virus that depends upon the hepatitis B virus in order to survive and replicate – so only those who are already living with hepatitis B can become infected with hepatitis delta. Hepatitis delta virus (HDV) is believed to infect between 5 and 10% of people living with hepatitis B virus (HBV). HDV can occur through either a superinfection or a coinfection. A superinfection occurs when someone who is already living with HBV contracts HDV, in which case there is a very high chance that the individual will develop chronic (lifelong) infections of both HBV and HDV. A coinfection occurs when both HBV and HDV are contracted at the same time – when this happens in adults, both infections tend to clear within six months and there is only a 5% chance that chronic HBV and HDV will occur. Chronic HDV is particularly dangerous because it advances progression to serious liver damage and liver failure much more quickly than HBV alone – 70% of people diagnosed with HDV and HBV will experience serious liver damage within 10 years without intervention, compared to 15-30% of people diagnosed with HBV alone.
So, What’s Happening in the World of Hepatitis Delta?
The past 18 months have been very important for hepatitis delta research and drug development. In July of 2020, the European Medicines Agency approved Hepcludex, the first-ever drug approved for treatment of hepatitis delta, for prescription in France, Austria, and Germany. Hepcludex works by stopping HDV from entering and infecting liver cells (and is known as an entry inhibitor). In 2021, MYR Pharma, the German company that originally developed Hepcludex, was bought by Gilead Sciences, Inc., which is based in the United States, and which has since filed a Biologics Licensing Agreement for approval of Hepcludex by the US Food and Drug Administration, which is expected later this year. At this time, there is not a timeline for when Hepcludex approval will be expanded to more countries and parts of the world. Prior to Hepcludex, the only drug available for hepatitis delta management, which was never officially approved, was called pegylated interferon alpha. This drug, still in use today, is only effective in controlling HDV in about 25% of people living with the virus and has challenging side effects that can negatively impact quality of life.
In addition to Hepcludex, two other promising drugs are in clinical trials, both developed by Eiger BioPharma in the United States. The first of these is called Lonafarnib, which is being evaluated for how well it works to target the protein assembly process, which keeps new viruses from being created (it is known as a prenylation inhibitor). Lonafarnib, in combination with another drug called Ritonavir, is currently in Phase III clinical trials (the phase in which the safety and effectiveness of a drug is compared to that of currently available treatments). These trials are fully enrolled, and data is expected by the end of 2022. Additionally, Eiger is currently enrolling phase III clinical trials for Pegylated Interferon Lambda, which works by stimulating the body’s own immune system to fight the virus. For a full list of drugs under investigation for hepatitis delta, including one from Janssen Research and Development and one from Antios Therapeutics, visit our Drug Watch page.
Are There Other Clinical Trials Happening for Hepatitis Delta?
Yes! There are clinical trials happening worldwide to test many of the drugs listed above and more. You can check out our clinical trials page here. This page includes a detailed description of each clinical trial, along with information about where it is being conducted and how to contact the principal investigator (or person leading the clinical trial). This page also includes a helpful graphic describing the clinical trial process and what it takes for a drug to move from an idea into the real world. It is important to note that not all of the trials listed here are for the purpose of testing a medication – some are observational studies to monitor what are called disease biomarkers, which are physical measures used to monitor the progress of a disease and could include tests of blood or liver function, for example. Clinical trials are currently happening in Australia, Austria, Belgium, Brazil, Bulgaria, Canada, China, France, Georgia, Germany, Greece, Israel, Italy, Japan, Mongolia, New Zealand, Pakistan, Republic of Moldova, Romania, Russian Federation, Spain, Sweden, Switzerland, Taiwan, Turkey, Ukraine, the United Kingdom, the United States, and Vietnam.
When Will HDV Drugs and Clinical Trials Be More Accessible in More Parts of the World?
This is unfortunately a difficult question to answer. Even though up to 10% of people who are living with hepatitis B are also living with hepatitis delta, there are not good systems in place to make sure that everyone who is living with HBV or who is at increased risk for HDV is tested and diagnosed, so there are not very accurate numbers about how many people in the world are living with HDV. Indeed, of the nearly 300 million people around the world who are living with hepatitis B alone, only 10% are aware of their diagnosis, so this number is undoubtedly far lower than even 10% for hepatitis delta. Without accurate information about how many people are living with the virus, it is difficult for drug and clinical trial developers to invest resources into studying or pursuing drug development or clinical trials for HDV.
Another problem is the many resources of time, money, and labor that are necessary for developing drugs, and preparing and running clinical trials. The development process for a single drug can take anywhere from 5-15 years and a much larger number of drugs fail to complete this process than succeed. Additionally, there needs to be some degree of existing infrastructure in a particular country in order to both support a clinical trial and ultimately to get a drug approved. Unfortunately, this kind of infrastructure is generally already established and easier to navigate in wealthier countries, so these are the countries in which clinical trials are generally held and in which drug approvals tend to happen first. Public health and clinical infrastructure is slowly developing and becoming more prioritized in different parts of the world and hopefully this trend will continue, but for the time being, the locations of clinical trials and approvals for important treatments point to the much larger issues of lack of access to health and healthcare in much of the world, that in turn stem from deep-seated poverty and inequity. Again, as health equity continues to be a focus of the public eye, these trends will hopefully begin to change, paving the way for greater access to healthcare for hepatitis delta, hepatitis B, and countless other health conditions.
What Is Hep Delta Connect’s Role?
This year, Hep Delta Connect will continue its work to raise the profile of hepatitis delta, both in the United States and around the world. We are committed to building awareness through partnerships with community-based organizations, healthcare providers, and governmental agencies around the world and through dissemination of educational materials and programming. We hope to foster greater engagement of those living with and affected by hepatitis delta globally, more focused advocacy efforts to bring HDV into the spotlight, and increased screening, diagnosis, and management of HDV. We keep our website and social media channels updated regularly with program news and events – make sure to follow us on Facebook, Twitter, and Instagram and check out our website frequently! You are always welcome to connect with us anytime at connect@hepdconnect.org. We look forward to an exciting year of work on HDV!
Valentine’s Day is February 14th! Today is a day to express your love for family, friends, and your significant other.
When you are living with chronic hepatitis B, starting a loving, romantic, relationship and initiating sex can be fraught with stress and difficult disclosures, before an intimate relationship can even begin.
To begin, living with hepatitis B only makes up a small part of who you are, it doesn’t define you. As guest blogger Lindsey says, “Having HBV is only a small facet of who you are, and not a reason to give up on a loving relationship. A partner who accepts you as you are and wants the best for you is someone who will not see HBV as a barrier to getting to know you.” Someone who genuinely cares about your wellbeing will understand how vulnerable you needed to be to tell them you are living with hepatitis B and react appropriately. And remember, your partner might also have something to disclose to you! So, you should think about how you would respond to them, as well.
Although the most common mode of transmission worldwide is from mother-to-child, hepatitis B can be spread sexually. The hepatitis B virus can be transmitted through sexual fluids like semen and vaginal fluids, in fact, it is 50x-100x more infectious than HIV. It is important to note that hepatitis B is more common than people think, affecting about 300 million people worldwide. Most of the time, people were infected at birth due to exposure to blood from their mother, or at an early age due to an unsafe injection or medical/dental procedures, or even direct contact with blood inadvertently exchanged by an infected caregiver or another child while playing. Since the most common symptoms are no symptoms, most people are completely unaware that they have hepatitis B for decades.
How Do I Tell My Partner I Have Hepatitis B?
So how do you disclose your status to a partner you’re about to get intimate with? This can be a nerve-wracking situation because you don’t know how they will react. Also, when is the right time to tell someone you are living with hepatitis B? Sharing your status is an important step to take. It establishes trust within a relationship dynamic. Disclosing should be relatively the same for people who are seriously dating or casually dating.
Firstly, you should know some basics about hepatitis B in case your partner has questions about it. Bring a fact sheet with you to the conversation to share with your partner. This can help them digest more information.
Practice the conversation with someone who already knows your status, like a family member or a close friend. Prepare for best and worst scenarios.
Choose a meeting place you feel safe and comfortable with. An in-person conversation would be best, but you can always do it over the phone: video calling, calling, or texting are all good options too!
Ask them to keep your hepatitis B status confidential! Your health is your health to tell, no one else’s!
Give your partner personal space and time to process what you just told them and let them ask questions for clarity.
Look after your mental health after you tell your partner.
You might wonder: How do I start this conversation? Here are some conversation starter ideas:
Start out on a positive note – “I’m really happy with our relationship…” – sharing your hepatitis B status is something that is positive because it demonstrates trust and respect.
You can start talking about hepatitis B to gauge to their reaction and depending on their reaction you can decide to disclose or decide it is not the time or the person to do so.
Use this as an opportunity to talk about sexual health in general – it is always a good idea to share sexual health history with potential partners!
Be honest and direct: “I am living with hepatitis B, I take medication and manage it. If you have the vaccine you are immune to hepatitis B.”
Once you find someone worthy of your time and energy you want to date, they should consider your health to be an important priority. To reiterate: your hepatitis B status does not define you. You are more than hepatitis B and any person who you should date will know that.
Happy Lunar New Year! This year is the Year of the Tiger. The Tiger is a symbol of strength and bravery. Let’s go into this Lunar New Year with strength and bravery. When we are first diagnosed with a health condition, it just does not affect us physically, but mentally and emotionally. Many of us experience fear, anger, sadness, depression, anxiety, and powerlessness. Being diagnosed with hepatitis B can be scary – you might not feel strong or brave, and that is okay! The great news is that you can live a long and healthy life with hepatitis B.
Anger is a natural emotion we might experience when we are first diagnosis with hepatitis B. You might ask yourself: how did this happen to me, and why did this happen to me? It is normal to feel this way, you just got unexpected news. You might feel anger or hostility to our parents or lovers who also did not know they had the virus and passed it on to us. Talk about your anger and frustrations with a close friend or a professional counselor. You can also use healthy coping mechanisms like exercising or meditation. After we process our anger, it is important to inform close contacts (sexual partners, people who live in the same household) of your hepatitis B status so they can get tested, and vaccinated if necessary.
Sometimes this anger can turn into sadness. Prolonged sadness is also a natural emotion you can experience when you find out you are newly with hepatitis B. If you feel this prolonged sadness, anxiety, or fear, or sleeplessness, it is time to talk to someone who can help. Our fears and anxieties can sometimes overwhelm us because we do not know what is going to happen next, but know you have a support system. If you need support, you can join Hep B Community. This online group is a global peer-led, volunteer-driven forum to support to those living with and affected by hepatitis B. They are dedicated to connecting people affected by hepatitis B with each other and with verified experts in the field, who provide trustworthy and accurate advice.
Your doctor may recommend treatment after interpreting your hepatitis B test results. The great news is that hepatitis B can be successfully managed through treatment and living a healthy lifestyle by exercising and eating foods that nourish our body. When you manage your hepatitis B, you can live your life to the fullest. As you process our initial reactions and emotions, know that you are strong and brave. Living with hepatitis B is part of us, but it does not define us.
Silymarin or “milk thistle”, an herb and extract of milk thistle seeds, is a supplement commonly taken by people living with hepatitis across the world, yet its proven benefits remain controversial. It is not a treatment for hepatitis B or D, nor has it been shown to have any effect against fighting these viruses. This herb is believed to have possible benefits on liver health due to its antioxidant and free radical fighting properties, although no studies have found a consistent positive effect on viral load or fibrosis scores.
U.S. National Institutes of Health (NIH) has published a directory of what scientific research has discovered about common herbal supplements. Probably the most popular herbal supplement pitched as a liver remedy is milk thistle, and its extract silymarin. The NIH milk thistle report found, “Results from clinical trials of milk thistle for liver diseases have been conflicting or haven’t been clinically meaningful. Some of the studies have been of poor quality, too.” The overall finding is that scientific research has not found any benefit of taking milk thistle.
Silymarin is often taken by patients or suggested by their health care provider during or after interferon treatment ends, presumably with the hope of a protective or anti-inflammatory effect on the liver. But a 2013 study on hepatitis C patients unsuccessfully treated with interferon (the standard treatment for hepatitis B and D coinfection) found no significant difference in silymarin’s ability to lower ALT scores over placebo (a pill with no active drug ingredients)1. Another 2013 metanalysis reviewed 8 studies which tested silymarin against a placebo and looked for measurable levels of improvement in ALT scores, of which the results were mixed and inconsistent1.
However, studies have found improvements in patients’ self-reported quality of life after taking silymarin 2 – perhaps due to decreased stress or self-perceived control over their health. However, a 2012 study which randomly assigned patients either silymarin or placebo to measure possible declines in ALT or hepatitis B and C virus levels, in addition to self-reported quality of life, found little to no improvement in any of these outcomes3 regardless of whether they took milk thistle or a placebo.
Due to mixed scientific findings and lack of proven effectiveness, people living with hepatitis B and/or D should not rely on silymarin as a treatment for these viruses and should discuss any new prescription recommendations with their doctor. Silymarin will not counterbalance damage done by hepatitis B or D viruses. While some studies have found silymarin to be well tolerated with low side-effects3, individual reactions and side effects can vary. In the U.S., supplements including silymarin are not regulated by the Food and Drug Administration (FDA), making the true contents of supplements unknown. For these reasons, patients should be cautious about supplements.
So, what can you do instead? Take your antiviral medication as directed by a doctor, eat a liver friendly diet, and exercise. Check out our blog on healthy habits you can incorporate into your lifestyle.
—
Disclaimer: Herbal products are not U.S. FDA approved, and the Hepatitis B Foundation cannot endorse the usage of such products that lack regulation and scientific evidence to deem them both effective and safe.
—
Fried, M. W., Navarro, V. J., Afdhal, N., Belle, S. H., Wahed, A. S., Hawke, R. L., Doo, E., Meyers, C. M., Reddy, K. R., Silymarin in NASH and C Hepatitis (SyNCH) Study Group (2012). Effect of silymarin (milk thistle) on liver disease in patients with chronic hepatitis C unsuccessfully treated with interferon therapy: a randomized controlled trial. JAMA, 308(3), 274-82.
Polyak, S. J., Ferenci, P., & Pawlotsky, J. M. (2013). Hepatoprotective and antiviral functions of silymarin components in hepatitis C virus infection. Hepatology (Baltimore, Md.), 57(3), 1262-71.
Rambaldi, Andrea & P Jacobs, Bradly & Gluud, Christian. (2007). Milk thistle for alcoholic and/or hepatitis B or C virus liver diseases. Cochrane database of systematic reviews (Online).
A primary goal of the Hepatitis B Foundation has always been to find a cure for the disease. When we ask Dr. Timothy Block, The Hepatitis B Foundation’s president and co-founder, about progress towards a cure by the many scientists worldwide working on that challenge, he considers many different angles.
The clinical definition of a cure Dr. Block favors is for someone who has hepatitis B to regain the liver health and low liver cancer risk enjoyed by someone without hepatitis B. That goal is considered too ambitious by most clinicians. A more realistic goal is sustained, drug-free, virological response for people living with hepatitis B. This means that a person for whom treatment has stopped has the same low (undetectable) viral load as when they were actively being treated on drug therapy. This already happens in a small percentage of patients and is associated with an improved clinical outcome: much less likelihood of developing serious liver disease, including liver cancer.
There is a new wave of drugs being evaluated now that Dr. Block believes may provide a sustained virological response, possibly when used in combinations with the current “standard of care”. Promising examples are what’s known as capsid inhibitors, siRNAs, NAPs/STOPs and entry inhibitors. There are even modifications of the polymerase inhibitors that have potential. As you can see in our Drug Watch page, at least 40 new treatments are now in clinical trial.
The reason it has been so difficult to find a cure for hepatitis B, Dr. Block explained, is that the virus has been around for hundreds of thousands of years and has established a mechanism to coexist with its host in a way that avoids a person’s immune system. It burrows its DNA into the nucleus of cells and is incredibly difficult to attack in ways that don’t harm the patient.
Another reason progress toward a cure has been slow, Dr. Block says, is that people with hepatitis B are simply too polite. Without a grassroots movement, hepatitis B will never get the attention and funding that other similar diseases have received.
“The hepatitis B community of scientists and stakeholders is incredibly innovative and collaborative, but we are small and underfunded,” he says. “We have made great progress in the 30 years since we started the Foundation, but that’s with a fraction of what has been spent on other diseases.”
With development of the effective COVID-19 vaccines, over the past year, we have all seen what can be done when the scientific community and governments rally around a public health crisis. “This shows that, with the right amount of money and focus, we can find a cure faster,” Dr. Block said.
“So, please, don’t be ashamed or scared of your hepatitis B diagnosis,” he added. “Seek treatment, take good care of yourself, and spread the word. Hepatitis B can be eliminated in our lifetime – we just need the support.”
Today is NAIRHHA Day! Every September 9th, the Hepatitis B Foundation brings awareness to National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness Day. Founded by advocates in Massachusetts, Washington D.C., and New York, NAIRHHA Day has been observed annually on September 9th by healthcare professionals, awareness campaigns, and other organizations since 2014. The Multicultural AIDS Coalition (MAC), Hepatitis B Foundation and the Coalition Against Hepatitis for People of African Origin (CHIPO) are working to establish NAIRHHA day as their own federally designated awareness day.
Hepatitis B and HIV in African Immigrant Communities
People of African origin are disproportionately affected by hepatitis B infection. Worldwide an estimated 292 million people are infected with chronic hepatitis B. Over 60 million people in Africa have hepatitis B which annually accounts for an estimated 68,870 deaths.1
In fact, in some African communities in the United States, between 5%-15% of people have chronic HBV infection. Unfortunately, due to the silent nature of the disease, lack of disease awareness, and limited health care access, 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.
There is a high burden of HIV/HBV co-infection in African countries because both diseases share similar transmission routes such as mother-to-child, unsafe medical and injection practices, and unscreened blood transfusions.2 Chronic HIV/HBV infection is reported in up to 36% of people who are HIV positive, with the highest prevalence reported in west Africa and southern Africa. The co-infection of HIV and HBV is especially dangerous because it accelerates liver disease such as fibrosis and cirrhosis. In fact, liver-related mortality is twice as high among people with an HIV/ HBV co-infection.2
With approximately 54,000 people with HBV who immigrate to the United States annually it is important to bring awareness to hepatitis B in African Immigrant communities on this day!
Get Involved
Viral hepatitis and HIV heavily impact African immigrant communities in the U.S. Let’s raise awareness and advocate for resources and funding to support elimination efforts & healthier communities.
Action Items:
There are African community organizations all over the U.S., from Boston to Seattle. Connect with one in your area to learn more about & contribute to the health of these vibrant communities. Start by visiting https://www.hepb.org/research-and-programs/chipo/member-organizations/
Data drives policy change & it can be difficult to find data about African immigrant communities because it is often not separated from data about African American communities. Advocate for this data to be separated by contacting your local Department of Health today!
Education & awareness matter! Many elected officials do not know about these issues, but they should! Contact your state & federal reps today to ask what they’re doing to address viral hepatitis & HIV in African immigrant communities. Visit https://www.usa.gov/elected-officials
Change needs resources! Help grow the capacity of African organizations in your area by contributing your time, money, or other resources to eliminating viral hepatitis & HIV in African immigrant communities. Find an org in your state or city & ask how you can plug into their work!
Funding is critical for progress to occur & advocacy is needed to make sure African immigrant communities receive enough money to combat viral hepatitis & HIV. Contact your federal, state, & local elected officials & local department of health to ask what they’re doing to support this. Start with members of @NASTAD found at https://www.nastad.org/membership-directory
Federal recognition means greater awareness, education, & resources. Continue to support the establishment of NAIRHHA Day as a federally recognized awareness day by contacting @HHS’s sitehiv.gov to advocate for this!
Spearman, C. W., Afihene, M., Ally, R., Apica, B., Awuku, Y., Cunha, L., Dusheiko, G., Gogela, N., Kassianides, C., Kew, M., Lam, P., Lesi, O., Lohouès-Kouacou, M. J., Mbaye, P. S., Musabeyezu, E., Musau, B., Ojo, O., Rwegasha, J., Scholz, B., Shewaye, A. B., … Gastroenterology and Hepatology Association of sub-Saharan Africa (GHASSA) (2017). Hepatitis B in sub-Saharan Africa: strategies to achieve the 2030 elimination targets. The lancet. Gastroenterology & hepatology, 2(12), 900–909. https://doi.org/10.1016/S2468-1253(17)30295-9
Are you a member of the African diaspora in the United States? Do you work for an organization that serves these communities? We would love for you to join CHIPO – the Coalition Against Hepatitis for People of African Origin! CHIPO is a national community coalition, co-founded and led by the Hepatitis B Foundation. Our members include a variety of individuals and organizations from all over the country, who are interested in and focused on addressing the high rates of hepatitis B among African communities in the US., which are disproportionately affected by hepatitis B and liver cancer. In some parts of the country, rates of chronic hepatitis B infection in African communities are estimated to range between 5 and 15% of people.
The purpose of CHIPO is to provide a space for an open exchange of ideas, best practices, and information about how to dismantle some of the many barriers that stand in the way of preventing, diagnosing, and treating chronic hepatitis B infection, and preventing liver cancer, in African immigrant communities. These barriers include a lack of disease awareness, high rates of stigma, limited access to healthcare and services, and the silent nature of the disease, which often does not present any symptoms until significant liver damage has occurred – a process which could take years or even decades. As a result, most African community members who have hepatitis B DO NOT KNOW that they are infected. This puts them at much greater risk for premature death from cirrhosis or liver cancer.
CHIPO, meaning “gift” in the Shona language, aims to disseminate accurate information about hepatitis B transmission, prevention, and treatment among community members, healthcare providers, and organizational leaders, and to improve the national capacity to raise hepatitis B awareness, testing, vaccination, and linkage to care among highly affected African communities. CHIPO also works to ensure that African immigrant communities are represented in HBV discussions and programs regionally and nationally. This is achieved through advocacy and the development of national and local partnerships. We currently have over 35 coalition partners around the U.S., dedicated to addressing viral hepatitis in African communities.
The activities of CHIPO are many and diverse. They include bimonthly virtual meetings, which often center around a presentation by a coalition member about measures or interventions that have been undertaken or research that has been done to achieve one of CHIPO’s objectives – namely improving awareness about and access to hepatitis B information, screening, vaccination, and linkage to follow-up care. Other activities include educational community events and presentations; supporting the design and implementation of initiatives to help accomplish CHIPO’s goals, such as the CDC Know Hepatitis B campaign (discussed below) and a recent grant from Bristol Myers Squibb to raise awareness about liver cancer and understanding about the link between hepatitis B and liver cancer in African immigrant communities; and promoting the work of coalition members locally and nationwide.
An example of a project for which CHIPO provided great support and guidance was the production of the first nationally available hepatitis B educational resources, specifically for African populations. Created in collaboration with the Centers for Disease Control and Prevention (CDC), these materials are part of a train-the-trainer-based model, and include a suite of materials, including a downloadable presentation on hepatitis B for community health workers, a printable flip chart for direct community education, and supporting fact sheets and resources. The presentation and flip chart have also been translated into Amharic, Arabic, French, and Swahili.
To read more about CHIPO, including previous blog posts, articles, and meeting minutes, and to access a full list of our members and the work they are doing around the country, visit our website.
Does this work sound interesting to you? Would you like to work with us to achieve lower rates of hepatitis B and liver cancer in African immigrant communities through increasing awareness, screening, vaccination, and linkage to care? Join us! Anyone is welcome to join CHIPO – contact the coordinator to get involved. We hope to see you on our next call!
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!
