As you know, clinical trials play an important role in the development and approval of treatments for hepatitis B. Clinical trials can tell how well new medicines work in people and can compare new medicines with current treatment options. Clinical trials provide a great opportunity to help advance hepatitis B research and give people with hepatitis B access to new treatments!
There are new phase 3 clinical trials starting for people living with chronic hepatitis B infection. GlaxoSmithKline (GSK) is launching two new phase 3 clinical trials called B Well-1 and B Well-2, which will test an experimental drug, bepirovirsen, as a potential treatment for hepatitis B.
Bepirovirsen, which has not yet been approved for treatment, is designed to stop the hepatitis B virus from making substances that may prevent a person’s immune system from fighting the virus. This can potentially allow the body to gain control over the infection.
Researchers are hopeful that bepirovirsen may be more effective than current treatment options and may lead to results that continue after treatment ends. Phase 2 clinical trial results showed that treatment with bepirovirsen reduced HBsAg and hepatitis B virus (HBV) DNA after 24 weeks of treatment in people with chronic hepatitis B.
In the B Well phase 3 studies, participants will be randomized into different study groups. Some people will receive bepirovirsen, and some people will receive a placebo. All people will remain on their nucleoside/nucleotide analogue (NA, such as tenofovir or entecavir) treatment. The studies are designed to see if combination treatment with bepirovirsen and an NA results in greater reduction of HBsAg and HBV DNA – and to see if this reduction is sustained after treatment ends. People in the study have a 2 in 3 chance of receiving bepirovirsen and a 1 in 3 chance of receiving placebo. The entire study lasts 78-102 weeks. Participants will not know whether they are receiving bepirovirsen or placebo, and neither will the doctor (until after the study ends). Participants will have medical visits throughout the study, where the doctor will check on hepatitis B viral activity and each participant’s overall health.
To participate in the new phase 3 B Well studies, people need to be at least 18 years old (although the minimum age requirement may be higher in some countries); have a documented hepatitis B infection for at least six months; and have been on antiviral therapy with an NA for at least 6 months.
The B Well study is being run in many countries, so there is opportunity for people in many areas of the world to participate! To find out more information and see if you might be eligible, please visit www.bwellstudy.com.
Hepatitis B is a liver infection which is caused by the hepatitis B Virus (HBV). Hepatitis B is transmitted from person to person through blood, semen, or other bodily fluids. You can learn more about the ways hepatitis B is spread here. People who inject drugs (PWID) are at high risk for contracting the virus due to the sharing of needles and low awareness and education about hepatitis B.
HBV Prevalence among PWID Communities
People who inject drugs (PWID) are at high risk for hepatitis B virus infection due to various factors, including sharing injection equipment and lack of awareness about hepatitis B transmission. Using unclean needles to inject drugs can result in the exchange of blood. This increases a person’s risk of being exposed to the virus. Hepatitis B prevalence among PWID is much higher than in the general population. Chronic HBV infection has been identified in 3.5% to 20.0% of PWID in a variety of settings, and 22.6% of PWID have evidence of past infection (Haber & Schillie, 2021). Drug injection is the most common risk for persons ages 18-40 years old with hepatitis B virus.
Barriers to Care for PWID Communities
Access to treatment can be a significant barrier for PWID, who may face stigma and discrimination in healthcare settings. To find out if someone has hepatitis B it is recommended that a triple panel hepatitis B test be run (which includes HBsAg, HBcAb and HBsAb). These tests will help identify people with hepatitis B, a previous exposure to hepatitis B and those who have protection against hepatitis B infection (through vaccination). For those with hepatitis B, treatment options for hepatitis B consist of antiviral medications that can help to control the virus and reduce the risk of serious liver damage, cirrhosis, and liver cancer. Treatment is taken daily for life generally. PWID lack access to these treatments due to the stigma attached with substance use and addiction. Some of these stigmas include being associated with dangerous, unpredictable, and lacking self-control (NIH, 2019). In a recent study, 88% of individuals from PWID have experienced some type of stigma from the healthcare system (NIH, 2019). Some of these stigmas included being poorly treated in healthcare facilities while interacting with nurses, security guards, and other medical providers. Due to these biases, people often refuse to seek health care services to avoid mistreatment. Stigma is the top barrier for PWID communities worldwide (Biancarelli et al, 2019). Even though the cost of treatment may be a barrier for some people, there are resources to find affordable options. Learn more about accessing medication here.
One effective prevention strategy to combat the spread of hepatitis B among PWID is to use clean injection equipment, like needles, works, and syringes. This will reduce the likelihood of transmission. New services have been introduced in cities like Philadelphia to decrease the rate of sharing needles. Prevention Point Philadelphia for example is a nonprofit public health organization that works to provide comprehensive harm reduction services to Philadelphia and surrounding areas. The syringe service program specifically allows used syringes to be exchanged for clean ones. With these services, the need to share needles can decline, which then can help decrease the risk of hepatitis B and other infectious diseases being spread in the community. Needle and syringe programs also provide other social and health services, such as counseling, hepatitis testing, and referral to drug treatment for example.
Another way to prevent hepatitis B in PWID is through education and outreach efforts to help raise awareness about the risks of transmission and how to reduce those risks. This will also encourage safer injection practices to reduce the risk of transmission through blood contact. Other recommendations for prevention of hepatitis B among people who inject drugs is to offer vaccinations for PWID communities. The hepatitis B vaccine is safe and effective and recommended for all adults in the US between the ages of 18-59 and above 59 with risk factors. Testing is another great way to help the community- to identify infection and encourage prevention through vaccination ultimately preventing liver cancer in the long run. Offering people who inject drugs incentives to increase uptake and complete the vaccination schedule is also a way to prevent hepatitis B in PWID (WHO, 2023). The United States has set a goal to decrease the number of cases of hepatitis B in the PWID community. The National Progress Report goal is to reduce the rate of new hepatitis B virus infections among people who inject drugs by more than 25% by 2025 (CDC, 2020).
To learn more about the resources provided by Prevention Point, click here.
Biancarelli DL, Biello KB, Childs E, Drainoni M, Salhaney P, Edeza A, Mimiaga MJ, Saitz R, Bazzi AR. Strategies used by people who inject drugs to avoid stigma in healthcare settings. Drug Alcohol Depend. 2019 May 1;198:80-86. doi: 10.1016/j.drugalcdep.2019.01.037. Epub 2019 Mar 8. PMID: 30884432; PMCID: PMC6521691.
Haber, P., & Schillie, S. (2021, August 18). Pinkbook: Hepatitis B. Centers for Disease Control and Prevention. Retrieved March 24, 2023, from https://www.cdc.gov/vaccines/pubs/pinkbook/hepb.html
The Hepatitis B Foundation Blog is an important source of information for people living with hepatitis B, public health advocates and partners, and the general public. This is why it’s so important to keep our blog relevant and up-to-date with everything hepatitis B related! In an effort to improve our work, we are conducting a short survey to hear from you and create content that matters to you.
Our survey should only take 1-3 minutes of your time but your responses will make a huge difference in the readership experience. Please click the link below to complete our survey!
November is American Diabetes Awareness Month! The Hepatitis B Foundation invited Dr. Tatyana Kushner, Theresa Worthington, and Marcia Mukanga Lange from Icahn School of Medicine at Mount Sinai to explain more about the relationship between hepatitis B and Diabetes.
Diabetes and hepatitis B are linked in ways that are important for patients and healthcare professionals to be aware of in order to improve outcomes in patients with chronic hepatitis B. The great news is that through healthy lifestyle changes, patients with chronic hepatitis B and diabetes can take ownership of their health and manage their diabetes.
Hepatitis B May Increase One’s Risk for Diabetes
While still controversial, some studies indicate that patients with chronic hepatitis B, and particularly cirrhotic (liver scarring) hepatitis B, are at a greater risk for developing type II diabetes. Type II diabetes is a medical condition in which the body is unable to use glucose (blood sugar) for energy. The liver is a key metabolic organ with a host of necessary functions, one of which is blood sugar regulation. The liver helps keep glucose levels normal in the bloodstream to prevent serious health issues. It is not clearly understood how hepatitis B increases one’s risk for diabetes, but research has shown that damaged liver cellscould lead to abnormalities in blood sugar regulation. Liver damage as a result of hepatitis B can promote the development of diabetes without effective management to prevent further complications.
It is also important to know that having diabetes can put a person at risk for hepatitis B due to frequent use of glucose monitoring devices. People with diabetes must regularly monitor and track their blood sugar or glucose levels by pricking their finger using a glucose meter/monitoring machine. Failure to clean the equipment properly or sharing the glucose monitor with others can result in the spread of hepatitis B. Therefore, people with diabetes should make sure they are vaccinated against hepatitis B to reduce the risk of transmission.
Hepatitis B Increases Risk of Gestational Diabetes (being diagnosed with diabetes for the duration of the pregnancy)
Research has also pointed to an increased risk of developing gestational diabetes in pregnant patients with chronic hepatitis B, likely also due to damaged liver cells. Gestational diabetes is distinct from type I or type II diabetes in that it is diagnosed specifically during pregnancy. The cause of gestational diabetes is unknown but likely related to the hormonal changes that occur during pregnancy. Being overweight or having pre-diabetes are two well known risk factors, aside from chronic hepatitis B, that increase a patient’s risk for developing gestational diabetes. Gestational diabetes is associated with harmful outcomes for the mother and baby, especially if not well controlled during pregnancy. These may include:
High blood pressure during pregnancy
Premature birth associated with breathing problems
Complications during delivery (giving birth to a child weighing nine pounds or more)
Developing type II diabetes later in life
Hepatitis B and Diabetes Comorbidity (being diagnosed with multiple conditions at the same time) Increases Risk for Cirrhosis and Liver Cancer
Chronic hepatitis B patients with diabetes are also at a greater risk for a more rapid progression of liver disease, including progression to cirrhosis, a condition where the liver is scarred and becomes permanently damaged.
Moreover, chronic hepatitis B and diabetes are known risk factors for hepatocellular carcinoma, a type of liver cancer. When a patient has both hepatitis B and diabetes, the risk of hepatocellular carcinoma is even greater, likely due to liver inflammation as a result of insulin resistance (a condition in which the body cannot break down sugar for energy). However, this risk can be reduced with proper blood sugar control. Interestingly, treating patients who have both diabetes and chronic hepatitis B with metformin, a diabetes medication that improves blood sugar levels, decreased the incidence of liver cancer to a greater degree than treating patients with insulin directly. Thus, both cautious and appropriate management of diabetes in HBV patients is critical.
Other Metabolic Risk Factors
Other metabolic-related risk factors for liver disease and liver cancer exist including nonalcoholic fatty liver disease (NAFLD). NAFLD is a liver condition associated with an accumulation of excess fat on the liver that is not caused by alcohol consumption. Common risk factors for NAFLD include type II diabetes and obesity. As vaccination rates and treatments for hepatitis B continue to improve, NAFLD is quickly becoming the leading cause of liver disease, liver cancer, and liver transplantation in the United States. Patients living with both NAFLD and HBV are more likely to have their liver disease rapidly progress. Thus, providers should counsel patients with chronic hepatitis B, with or without diabetes, to manage their weight through healthy eating and physical activity. For those with diabetes, optimizing control of blood sugar levels in order to improve both overall and liver-specific health is also key.
Cheuk-Fung Yip T, Wai-Sun Wong V, Lik-Yuen Chan H, Tse YK, Pik-Shan Kong A, Long-Yan Lam K, Chung-Yan Lui G, Lai-Hung Wong G. Effects of Diabetes and Glycemic Control on Risk of Hepatocellular Carcinoma After Seroclearance of Hepatitis B Surface Antigen. Clin Gastroenterol Hepatol. 2018 May;16(5):765-773.e2. doi: 10.1016/j.cgh.2017.12.009. Epub 2017 Dec 12. PMID: 29246694.
Lei S, Chen S, Zhao X, Zhang Y, Cheng K, Zhang X, Wang Z, Sun Y, Wu S, Wang L. Hepatitis B virus infection and diabetes mellitus: the Kailuan prospective cohort study in China. Hepatol Int. 2020 Sep;14(5):743-753. doi: 10.1007/s12072-020-10086-2. Epub 2020 Sep 3. PMID: 32885367.
Liu Y, Ye S, Xiao X, Zhou T, Yang S, Wang G, Sun C, Zhang B, Wang G. Association of diabetes mellitus with hepatitis B and hepatitis C virus infection: evidence from an epidemiological study. Infect Drug Resist. 2019 Sep 12;12:2875-2883. doi: 10.2147/IDR.S218536. PMID: 31686868; PMCID: PMC6751765.
Tacke F, Weiskirchen R. Non-alcoholic fatty liver disease (NAFLD)/non-alcoholic steatohepatitis (NASH)-related liver fibrosis: mechanisms, treatment and prevention. Ann Transl Med. 2021 Apr;9(8):729. doi: 10.21037/atm-20-4354. PMID: 33987427; PMCID: PMC8106094.
Tan Y, Wei S, Zhang W, Yang J, Yang J, Yan L. Type 2 diabetes mellitus increases the risk of hepatocellular carcinoma in subjects with chronic hepatitis B virus infection: a meta-analysis and systematic review. Cancer Manag Res. 2019 Jan 14;11:705-713. doi: 10.2147/CMAR.S188238. PMID: 30679924; PMCID: PMC6338123.
Xu C, Chen J, Zhang PA. Relationship Between Diabetes Mellitus and Cirrhosis Risk in Chronic Hepatitis B Patients in Wuhan, China. Med Sci Monit. 2019 Oct 29;25:8112-8119. doi: 10.12659/MSM.917000. PMID: 31661471; PMCID: PMC6839395.
Zhang, J., Shen, Y., Cai, H., Liu, Y.-M., and Qin, G. (2015) Hepatitis B virus infection status and risk of type 2 diabetes mellitus: A meta-analysis. Hepatol Res, 45: 1100– 1109. doi: 10.1111/hepr.12481.
Did you know that chronic infection with hepatitis B is the leading cause of liver cancer?
For this month’s blog we talk to an expert in liver cancer, Dr. Amit Singal. Dr. Singal is a medical researcher and professor at the UT Southwestern Medical Center with extensive experience in digestive and liver diseases. Join us as we interview Dr. Singal about the importance of liver cancer screening as a preventive tool to improve health for people who may be at risk for hepatitis B or liver cancer.
Question: What puts someone at risk for liver cancer or hepatocellular carcinoma (HCC)?
There are several risk factors for liver cancer including obesity, being male, and older age; however, the biggest risk factor is the presence of advanced chronic liver disease (having cirrhosis for example). Most people who develop hepatocellular carcinoma (the most common type of liver cancer) do so after having cirrhosis (scarring of the liver). However, it is important to know that there is a small number of people with hepatitis B (about 10%) that can develop liver cancer or hepatocellular carcinoma without having cirrhosis.
Question: Should a person with hepatitis B get screened for liver cancer?
Chronic hepatitis B is a risk factor for HCC; but we do know that some patients are at higher risk than others for liver cancer. Most screening recommendations are based on demographics (like age and sex) and clinical characteristics (like how a person got hepatitis B and presence of other risk factors). We now have started to move to using a clinical risk calculator that incorporates these factors, such as the PAGE-B score (which is based on platelet count, age, and gender). A platelet count refers to the number of platelets or cells that help your blood clot. It is used in blood tests to detect any problems with your blood flow or diagnose any serious illnesses like cancer. You can learn more about the clinical risk calculators for liver cancer here.
Question: Can liver cancer be detected at an early stage?
Yes, liver cancer can be found at an early stage if patients undergo regular liver cancer screening. Liver cancer screening should be performed using abdominal ultrasound and a blood test, alpha fetoprotein (AFP), every 6 months. AFP is a protein found in the liver. Very high levels of AFP may indicate cancer. These tools are available, non-invasive (does not require the use of any tools to cut through the skin or enter the body) and can detect most liver cancers at an early stage. This is very important since we have cures available if liver cancer is found at an early stage, with average survival over 10 years in the United States for example. Unfortunately, patients where liver cancer is found at later stages do not typically have curative therapies available and have an average survival of only 2-3 years. Therefore,regular liver cancer screening, especially with hepatitis B, is so important.
Question: Does an individual need to display symptoms before getting screened for liver cancer?
We do not want to wait until patients have symptoms. Liver cancer can be silent and asymptomatic (without symptoms) for several months and is almost always silent at an early stage. Once people do have symptoms, patients typically have large tumors, and it is too late for curative liver cancer treatments.
Question: What is the process of liver cancer screening like? What tests are used to screen for liver cancer?
Screening should be performed using abdominal ultrasound and a blood test, alpha fetoprotein, every 6 months. These tools are available, non-invasive, and can detect most liver cancers at an early stage. If either test is positive or abnormal, then patients typically undergo confirmatory diagnostic testing with multi-phasic computerized tomography (CT) scan (a combination of x-ray scans that looks at changes insides your body) or contrast-enhanced MRI (a machine that produces pictures of organs in the body).
Question: Are there any risks involved in liver cancer screening?
Abdominal ultrasound and AFP are safe and non-invasive, so the risks of liver cancer screening are relatively low. However, there is a risk of false positive results, which means that someone tests positive when they are not positive for liver cancer. This can result in additional diagnostic testing and patient anxiety. Current research shows that these risks are uncommon, and the benefits of HCC screening far outweigh the associated risks.
Our thanks to Dr. Singal for providing this life-saving information. Liver cancer may be silent, but people living with hepatitis B must be loud when telling their doctors that they need to be screened!
If you have recently been diagnosed with hepatitis B or want to learn more about liver health, check out the Hepatitis B Foundation’s Information Guide here.
This May, for Hepatitis Awareness Month, we are asking you to #justBLoud for hepatitis B. Currently up to 2.4 million living in the U.S. have chronic hepatitis B, yet no one seems to be talking about it. The average American is unaware about hepatitis B and why our country needs to put more energy into prevention and finding a cure. The louder we are, the more we can help people get screened, vaccinated or treated for this serious disease.
You can start getting loud the Hepatitis Awareness Month by making a short video explaining why it’s important for you to #justBLoud about hepatitis B. It can be a personal story or you can take the text right from the below bulleted points. Be sure make the post public and tag #justBLoud and tag HepBFoundation. You can even make quick Instagram and Facebook stories using the #justBLoud stickers we created, just search “justbloud” in the stickers menu. If you’re camera shy, write down your reason for being loud and share a photo of it online.
Talking points for your message may include:
#JustBLoud about prevention: Hepatitis B is easily prevented with a safe vaccine.
#JustBLoud about transmission: Hepatitis B is transmitted through direct contact with infected blood, not casual contact. Hug someone with hepatitis B today.
#JustBLoud about screening: In the U.S. only 25% of people with hepatitis B are aware that they have hepatitis B. Get screened today.
#JustBLoud about treatment: Only 50% of people with diagnosed chronic hepatitis B in the U.S. receive appropriate medical care.
#JustBLoud about giving: Donating to the Hepatitis B Foundation makes a big impact for people living with hepatitis B. It affects advocacy efforts as well as research to find a cure!
Other easy ways to just B Loud this Hepatitis Awareness Month:
Whatever you do this month, don’t be quiet! We need to spread the word about hepatitis B to help people living with hepatitis B whether they know it or not and those who are unvaccinated. Thank you in advance for participating.
Please note: If you don’t want to participate because you fear discrimination please contact us privately here.
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.
Every year on July 28th, we celebrate World Hepatitis Day in honor of Dr. Baruch Blumberg’s birthday. Dr. Blumberg discovered the hepatitis B virus in 1967 and subsequently developed the hepatitis B vaccine two years later in 1969. We commemorate World Hepatitis Day by raising awareness about viral hepatitis. With almost 300 million individuals living with hepatitis B worldwide, it is so important to bring awareness to this preventable and treatable disease. This year’s World Hepatitis Day theme is “Hepatitis Can’t Wait”. The theme focuses on the fact that people with viral hepatitis need action now – to make sure they have access to testing and treatment to save their lives.
Here are some ways you can get involved with World Hepatitis Day!
Share on Social Media
You can get involved with the Hepatitis Can’t Wait campaign by doing 1-minute actions, 10-minute actions, or longer actions! Your actions can be as simple as sharing a post on social media or more involved like getting in contact with your policymaker to encourage viral hepatitis prioritization
If you are experiencing discrimination due to your hepatitis B status, consider adding your story to our discrimination registry. We are working to document discrimination related to hepatitis B. Discrimination is definedas the unjust, unfair or prejudicial treatment of a person on the grounds of their hepatitis B status. In other words, being treated differently because of one’s hepatitis B infection. For someone with hepatitis B, this can mean exclusion, denying benefits, denied employment, education, training, goods or services, or having significant burdens imposed on an individual due to their infection status.
Become an Advocate
Become a Hep B Advocate! Sign up below to receive the latest news and updates about hep B policy issues, learn about upcoming advocacy events, and be notified of opportunities to take action and show your support for our policy initiatives. We’ll provide resources, information, and tools to help you:
Communicate effectively with your elected officials
Educate and engage your community on hep B policy issues
Recruit and organize other hep B advocates and champions in your community
Promote and participate in ongoing national, state, and local advocacy efforts.
Participate in a Clinical Trial
Volunteering for a clinical trial program can be very valuable. Expensive blood work, treatment medications, and doctor’s visits are usually provided free of charge for those accepted into a study. Clinical trials also provide the opportunity to potentially benefit from the latest advances in medical science.
GlaxoSmithKline is launching a clinical trial, “B-Together,” to study how two drugs (GSK3228836 and Pegasys) might work together to treat chronic hepatitis B (CHB). Researchers hope to find new treatments that could be more effective and lead to positive results that last long after the treatment ends.
You may be eligible to participate in this trial if you are at least 18-years old, have been living with documented CHB for at least six months, and have also been receiving stable nucleos(t)ide treatment (not telbivudine) with no changes for at least six months prior to screening and no planned changes for the duration of the study (79 weeks). This trial is ongoing in the UK, Spain, Russia, Poland, Italy, Korea, Japan, China, the U.S., Canada and South Africa.
Learn more and check your eligibility to participate.
Listen and Learn
Listen to 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.
Below are the episodes you can listen to, and stay tuned for more episodes about hepatitis B!
COVID-19 and Hepatitis B
The History of the Hepatitis B Foundation and Hep B 101
February 12th marks the start of Lunar New Year and it’s the Year of the Ox! The ox represents hard work, diligence, and honesty.
Sometimes it is so easy to get wrapped up in being diligent at work and neglect your health! If you have not been tested for hepatitis B, you might want to strongly consider knowing your status. If you are living with hepatitis B, be diligent with committing to a healthy lifestyle. Some healthy lifestyle tips include: see your hepatitis B doctor every 6 months to monitor the health of your liver, reduce or eliminate alcohol intake, eat unprocessed foods, avoid smoking or illicit drugs, and exercising.
If you celebrate the Lunar New Year, you might practice some traditions like cleaning your home, setting off firecrackers, watching a lion dance, exchanging red envelopes, and most importantly, a family reunion dinner. Celebrating the New Year might be difficult if you are living with hepatitis B, but you can take steps to celebrate mindfully. Here are some little suggestions for you to consider and possibly incorporate into this year’s celebration:
Making healthier food choices
Try steaming dumplings instead of frying them
Eat more veggie and lean meat dishes
Reduce or eliminate alcohol intake
Not drinking in a social setting can be hard when everyone else is. Some alternatives can include mocktails, non-alcoholic beers, or sparkling water.
In between celebrating, go outside for a little walk around the neighborhood to get some exercise.
Some people living with hepatitis B might be worried about transmitting the virus to their family members through sharing food. The good news is that you cannot transmit hepatitis B through food, water, or even sharing utensils!
If you celebrate the Lunar New Year, we wish you fortune, happiness, and health.
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!