The holiday season is here! November and December are full with holidays like Diwali, Canadian Thanksgiving, American Thanksgiving, Hanukkah, Kwanzaa, Christmas, and the New Year just to name a few. This time is often filled with love, happiness, and delicious food. If you or a family member is living with hepatitis B, it is important to eat mindfully during this festive time. Eating healthy is not always a possible option – not with delicious smells filling your kitchen, but you can make healthier choices! Here is a list of action items you can do to help maintain a healthy liver during the holidays:
You can contribute a healthy dish – something filled with lean meats, hearty vegetables, and is low in sodium.
Try your best to avoid alcohol and go for drinks with lower amounts of added sugar.
Coffee has been associated with improvement in liver enzymes!
You can bring your own non-alcoholic beverage like a sparkling flavored drink.
Click on the veggies for some delicious and healthy recipes!
Stay active – take a walk with your family/someone in your COVID social circle or do a free online exercise video.
Most importantly, do not feel guilty. Try your best to make healthy choices and not over-indulge, but do not beat yourself up if you do – your next meal can be healthier!
Remember that everything you consume is filtered through your liver; your liver never gets a break! The lifestyle tips listed above may seem simple, but they can have a large, positive impact on your health. Sticking to a regular healthy routine even during the holiday season will make it easier to continue those habits all year long! You can also check out our healthy liver tips to see what other actions can be taken to protect your liver.
Medicine is not one size fits all. Changing that idea takes All of Us.
Why is it that an African American woman in her thirties living in a large city tends to receive the same medical care as a man in his sixties of European descent who lives on a farm in rural America, who in turn receives the same treatment as a Korean American mother of two in her forties living in a midwestern suburb? Each of these people has different ancestry, lifestyle, environment, socioeconomic status, and genetics, all of which have a major impact on health. Why should these factors not impact healthcare as well?
The All of Us Research Program, an initiative of the National Institutes of Health, is working to change that. The goal of the program is to diversify the pool of available biomedical data, so that researchers can study many different people and groups, and doctors in turn can then make much more informed decisions about prevention, diagnosis, and treatment of various conditions, that are much more tailored to individual people and to specific groups of people, a practice known as precision medicine. For far too long, doctors have been using data from and information about “the average person” (typically a white man) to make decisions and provide care to everyone in the extraordinarily diverse population of the United States. Now there is a great opportunity for all of us to come together to help them change that!
The overall objective of the project is to recruit one million or more participants and to follow them over ten years.The Hepatitis B Foundation, in partnership with Hep Free Haw aii and the Asian Engagement and Recruitment Core (ARC), is working to spread the word about the All of Us Research Program to everyone, but particularly among Asian American, Native Hawaiian, and Pacific Islander communities, who are under-represented in this area, historically and currently.
Why should I participate?
This is an important chance to learn about your own health, including risk factors and exposures. This is also a great opportunity to help fight diseases, start to close the gaps in a healthcare system that currently does not provide all Americans with the same high quality of healthcare, and more quickly find solutions to serious healthcare problems. Examples of some questions you could help answer are: “How can we prevent the chronic pain that affects more than 100 million people across the US each year? How can we develop cancer treatments that will work the first time, so that we can skip painful trial-and-error chemotherapy? Why does the heart medication Plavix have a much lower success rate among Asian Americans than those of European descent? What would be a more appropriate treatment?” The answers to these questions can be found by gathering more data and more insights from more people. People like you! You have the power to change the course of healthcare for yourself, your community, and future generations.
How Can I Get Involved?
Getting involved is quick and easy! The steps to follow are:
Visit www.joinallofus.org to learn more, enroll, and provide consent for the sharing of your electronic health record, where all of your medical information is digitally stored.
Complete a series of surveys that will ask for information about your lifestyle, environment, family history, and background.
Provide health measurements like height, weight, waist circumference, and heart rate, among others.
Provide biosamples of blood, urine, and saliva.
Start using apps and technology to track your behaviors and routine activities, starting with a FitBit and including others down the road that are still under development.
You will receive help and guidance at each stage in the process.
What about my privacy?
Glad you asked! Any data that you provide will be highly secure and protected. Data security for this project has been built by experts with input from the public. All data is encrypted with identifying information removed, and guaranteed by a Certificate of Confidentiality. Researchers must also agree to a Code of Conduct before accessing the data. You will have access to any and all of your data at any time throughout the program and the highest standard of transparency is practiced.
What if I don’t want to continue?
You are in control. You can stop your participation at any time. If you have already provided data and no longer want it to be used, you can simply let All of Us know and your data will be destroyed.
Partners in the Process
All of Us is not a project where researchers know all of the answers and are just mining participants for data. Choosing to participate in All of Us means that you are a partner in the research process. Your thoughts and insights are valuable and you will play a direct role in shaping healthcare for yourself and your community both now and in the future – not just with your data, but as an active participant in the research process, including in the proposal and guidance of future research.
The All of Us Research Program aims to serve people better, to be more inclusive in biomedical research, to find healthcare solutions that are realistic for and meaningful to more people, and to work toward research and medical breakthroughs that are more reflective of the diversity of the United States. Take the next step to make sure we are Invisible No Longer. Visit www.joinallofus.org to get started today!
November is National Adoption Month! National Adoption Month’s ultimate goal is to increase national awareness of the need for permanent families for children and youth in the U.S. foster care system. Most importantly, this month acknowledges the birth families who make the difficult decision to give up their children for adoption, the foster families who care for children from various backgrounds, and the adoptive families who love and care for their adoptive children.
Adoption and Hepatitis B
Many people wish to adopt children from countries where hepatitis B infections are common: Asia, South America, Eastern Europe, and some parts of Africa. Children from these regions are often infected with the virus from their birth mothers who have hepatitis B and unknowingly pass the disease on to their children during delivery. In addition, many of these countries re-use needles for medications or blood tests, a practice that places children at risk if they have not already been infected at birth. It is advised that you do not request your child to be tested for hepatitis B in their birth country, since the blood test itself could be a source of infection.
Domestic adoptions also present some risk to potential adoptees. Children born to women in high-risk groups could have been infected with hepatitis B at birth. In addition, children from group homes are at increased risk for hepatitis B infection.
Many children who have hepatitis B do not have symptoms of the viral infection. This makes it difficult for adoptive parents to know their child is sick without a blood test! This simple 3-part blood panel will inform you if your child has an active infection, had a previous infection and recovered, has “immunity”, or needs a vaccine. The good news is that your adoption agency should be able to tell you if a child has been tested for hepatitis B. If you have questions or concerns about the test results please contact us to speak with our knowledgeable staff. We can also refer you to a parent who has adopted a child with hepatitis B.
Finding out that the child you wish to adopt has chronic hepatitis B can be upsetting, but should not be cause for alarm or stopping an adoption. We hope that a hepatitis B diagnosis will not change your decision to adopt a child. You can be reassured that most children with hepatitis B will enjoy a long and healthy life. Hepatitis B does not usually affect a child’s normal growth and development, and there are generally no physical disabilities or restrictions associated with this diagnosis.
World Kindness Day is just around the corner on November 13th. On World Kindness Day, we celebrate kindness and spread it around the world. Let’s celebrate this day by treating people living with hepatitis B with kindness, compassion, and respect.
Unfortunately, hepatitis B is often highly stigmatized – and the people living with it can feel ostracized. Why is there so much stigma surrounding hepatitis B? A study found that among Asians, the majority thought hepatitis B was a genetic disease which is why the family might feel stigmatized if a family member is living with it.1 Due to cultural values, interdependence, collectivism, and family centeredness, persons of Asian descent might think that having hepatitis B is a reflection on the family.1 This attitude could lead to people not wanting to get tested for hepatitis B because they worry about bringing stigma to the family.1 Another study found that among African communities, individuals were confused about the differences between hepatitis B, HIV, malaria, and other infectious diseases.2 This misattribution and confusion could lead to a person living with hepatitis B being perceived as an outsider to society and can cause stigma or discrimination.2
The studies demonstrate that the lack of education and information surrounding hepatitis B contributes to the stigma that individuals living with hepatitis B face. There is a lot of ignorance, myths, and misconceptions about hepatitis B. Let’s debunk some of these notions!
Hepatitis B cannot be spread through casual contact, only through blood-to-blood contact or sexual transmission. This means you can hug, kiss, and share a meal with your friends and family without worrying about contracting hepatitis B. In Asian communities, it is especially important to emphasize that family members living with an individual who has hepatitis B, can share meals with each other. And there is a safe and effective vaccine to protect loved ones – so transmission can be prevented!
Sometimes people do not want to discuss their hepatitis B status because of its association with intravenous drug use. People who inject drugs experience more discrimination because of the stigma surrounding addiction. On the flip side, individuals who do not inject drugs but are living with hepatitis B, might not want to discuss their status for fear that other people will stigmatize or label them as drug users. Additionally, people might assume individuals living with hepatitis B engage in risky sexual behavior which can further stigmatize them. This stigmatization only harms people living with hepatitis B because they cannot talk about their status openly, which would help destigmatize the disease.
Even extending past World Kindness Day, we encourage you to be kind to people living with hepatitis B. And if you are living with hepatitis B, please be kind to yourself! Continue to educate yourselves on hepatitis B to help lessen the stigma and discrimination surrounding it.
Below is a brief list of resources for people living with hepatitis B or individuals living with people living with hepatitis B.
Know Your Rights – for anyone experiencing discrimination because of their hepatitis B status
References
Kim, M. J., Lee, H., Kiang, P., Watanabe, P., Torres, M. I., Halon, P., Shi, L., & Church, D. R. (2015). Debunking the myth: low knowledge levels of HBV infection among Asian American college students. Asia-Pacific journal of oncology nursing, 2(1), 8–16. https://doi.org/10.4103/2347-5625.152399
Mokaya, J., McNaughton, A. L., Burbridge, L., Maponga, T., O’Hara, G., Andersson, M., Seeley, J., & Matthews, P. C. (2018). A blind spot? Confronting the stigma of hepatitis B virus (HBV) infection – A systematic review. Wellcome open research, 3, 29. https://doi.org/10.12688/wellcomeopenres.14273.2
November is National Family Caregivers Month! There are over 40 million Americans who are unpaid caregivers to their families, friends, and neighbors1. This month we celebrate and support all the caregivers who work tirelessly to keep our family and communities strong.
Caregivers and Hepatitis B
Caregiving can be a tough, but noble job. It is often unpaid, long hours, and can cause burnout. However, caregivers selflessly work to provide their friends or family with the best care possible. Hepatitis B just does not affect the person living with the virus; it affects their family, friends, coworkers, and community members. Someone who lives with an individual who has hepatitis B might be put in a caregiver position.
Caring for an individual living with hepatitis B might be difficult if the person has advanced liver disease or is experiencing side effects from medication. While it may not always be physically demanding, caring for a person with hepatitis B can be emotionally overwhelming. Caring for an individual living with hepatitis B and other related complications can stir up heavy emotions which can take a toll on a caregiver’s mental health. Managing medications, diet, and healthy lifestyle for people living with hepatitis B during the COVID-19 pandemic can especially feel stressful. Luckily, there are resources available to help reduce feelings of stress and being overwhelmed.
Resources for Caregivers
Feeling stressed or overwhelmed with taking care of your friend or family member? It is also important to look after your own physical and mental health. Check out these resources from the How Right Now Initiative to help you manage your stress especially during COVID-19. Some suggestions include:
Go for a quick walk or stretch
Call, text, or video chat with friends or family
Take several deep breaths
Does someone in your close circle have hepatitis B? Check out the Centers For Disease Control and Prevention’s Know Hepatitis B Campaign’s fact sheet, “When Someone in the Family has Hepatitis B”. This fact sheet has basic information about hepatitis B and the importance of testing and vaccinating family members. The fact sheet is available in 13 Asian and African languages as well as three English versions focused on Asian American, Native Hawaiian and Pacific Islander, and African Immigrant communities. Download the fact sheet here.
For more information about the Know Hepatitis B Campaign, visit the campaign website.
A new page has been created on the Hepatitis B Foundation’s website that contains a compilation of various opportunities available for people living with hepatitis B. These opportunities can be for clinical trials, other types of research, or toolkits with information and resources for those living with hepatitis B and their loved ones and community members. All of these postings are produced or organized by entities external to HBF, but all are related to improved quality of life and liver health. The first two of these opportunities are listed below.
New Tool from CME Outfitters
A new HBV Patient Education Hub has been compiled by continuing medical education company CME Outfitters. The hub includes a great deal of valuable information, such as an overview of hepatitis B, a list of questions to ask your healthcare provider, a patient guide, information about hepatitis B co-infection, doctors’ advice on what to expect from treatment, and many other resources. All information is in an engaging and accessible format. Check it out today!
New Study Opportunity Available for People Living with Itching (Cholestatic Pruritus) Due to Liver Disease or Injury
A new paid opportunity has become available for those experiencing itching caused by hepatitis B, hepatitis C, drug-induced liver injury, auto-immune hepatitis, or primary sclerosing cholangitis (PSC). If you live in Canada or the US and have this condition, you may be eligible to participate in an interview to help researchers better understand your lived experience. The new research study is seeking participants ages 12-80 living in the US and Canada who are living with this itch. This is an opportunity to be involved in research and help advance scientific understanding! Contact the research coordinator for more information and to check if you are eligible.
Please note that this study does not include treatment and pruritus must be at an intensity level of 4 on a scale of 1-10 for at least the past 8 weeks in order to participate. Patients cannot be pregnant or breastfeeding or have a diagnosis of primary biliary cholangitis.
We are very excited to unveil this new section of our website and hope it will be a useful resource for many going forward! Please check back often, as more opportunities will be posted as they arise.
SHEA Updated Guidelines on Health Care Workers Living With Hepatitis B, Hepatitis C, and Human Immunodeficiency Virus
Many health care students and professionals in the U.S. are living with hepatitis B, hepatitis C or HIV. Living with these conditions should not interfere with a person’s health care education or professional career. It is important that health care students and professionals are aware of their rights and responsibilities – and equally important that health care schools and institutions are aware of their responsibilities, as well. There are now new guidelines to help institutions understand how to manage health care professionals living with hepatitis B, hepatitis C or HIV.
Health care workers should have a complete vaccination series for hepatitis B. Learn more about the vaccination series
Health care professionals living with HBV who do not perform exposure-prone procedures should not be prohibited from participating in patient-care activities solely on the basis of their HBV infection
Health care personnel living with HBV should seek optimal medical management, including, when appropriate, treatment with effective antiviral agents
Consistent with CDC guidelines, there is no justification for, nor benefit gained from, notifying patients with regard to health care professionals living with HBV who are being managed through an institution’s oversight panel
Some of the important updated recommendations for health care workers living with hepatitis C includes:
Because of the opioid epidemic in the United States, consideration should always be given to the possibility of substance use disorder when health care professional-to-patient transmission of a bloodborne pathogen is detected
Health care professionals living with HCV should seek optimal medical management, including treatment with effective antiviral agents to achieve cure of the infection
Health care professionals living with HCV who received treatment resulting in ‘undetectable’ circulating HCV-RNA levels can perform exposure-prone procedures with some stipulations:
Has not been previously identified as having transmitted infection to patients following definitive therapy resulting in a sustained virologic response (SVR)
Provides the oversight panel with records and laboratory results (or permits the HCP’s personal physician to provide records and laboratory results) confirming receipt of treatment and SVR
Has achieved SVR by remaining HCV RNA negative for 12 weeks following the completion of therapy
Some of the important updated recommendations for health care workers living with HIV:
Health care professionals living with HIV and who, despite appropriate antiretroviral treatment, have a confirmed viral load >200 copies/mL should not perform exposure-prone procedures until they have achieved virologic suppression
Scientists acknowledge that when the viral load is undetectable = untransmittable
Health care professionals living with HIV whose confirmed viral load is below 200 copies/mL can perform exposure-prone procedures with some stipulations:
Has not been previously identified as having transmitted infection to patients while receiving appropriate suppressive therapy
Obtains advice from an oversight panel about recommended practices to minimize the risk of exposure events
Is followed by a physician who has expertise in the management of HIV infection and who is allowed by the individual to participate in or communicate with the oversight panel about the individual’s clinical status
Is monitored on a periodic basis (eg, every 6 months) to assure that the HIV RNA remains below the level of detection, with results provided to the oversight panel.
Is followed closely by their physician and the oversight panel instances in which fluctuations in HIV viremia occur, including appropriate retesting as discussed above to reevaluate the HCP’s viral load
Agrees, in writing, to follow the recommendations of the oversight panel
Henderson, D., Dembry, L., Sifri, C., Palmore, T., Dellinger, E., Yokoe, D., . . . Babcock, H. (2020). Management of healthcare personnel living with hepatitis B, hepatitis C, or human immunodeficiency virus in US healthcare institutions. Infection Control & Hospital Epidemiology, 1-9. doi:10.1017/ice.2020.458
Author: Evangeline Wang, Program Coordinator, Hepatitis B Foundation
Hepatitis B and Discrimination of Health Care Students
Hepatitis B virus (HBV) infection affects more than 290 million persons globally and up to 2.2 million persons in the United States. Living with hepatitis B can mean living with stigma and facing discrimination. Stigma related to hepatitis B is often caused by low awareness from the general public and health care providers. Low awareness can lead to fear and misconceptions about the disease. Discriminatory practices that affect health care students with hepatitis B infection may include unjustified denial of school admission or enrollment, restriction of clinical training, or dismissal from an academic program. Given substantial progress in hepatitis B research and treatment in recent decades, it is important to address discriminatory policies that affect health care students.
Kate Moraras, Deputy Director of Public Health at the Hepatitis B Foundation led a research project which found that 36 accredited health care programs in Pennsylvania (43%) had policies which appear to be discriminatory against students living with hepatitis B. These policies included requiring proof of hepatitis B immunity for enrollment or program completion. Failure to produce proof could result in revocation of program admission or not being allowed to enter clinical rotations. This is problematic because the Americans with Disabilities Act (ADA) protects individuals living with hepatitis B. The Department of Justice (DOJ) states that there is no lawful basis for excluding persons living with hepatitis B from health profession schools. Not only does the DOJ protect individuals living with hepatitis B, but the Centers for Disease Control and Prevention (CDC) states that health care students with hepatitis B pose no risk to patients and should not be limited in their health care education. The CDC recommends that health care students should not be arbitrarily excluded or restricted from activities that could impede practice or studies. They additionally recommend hepatitis B testing only for healthcare providers at increased risk of infection or conducting invasive, exposure-prone procedures and most health care students are not participating in these invasive procedures. If you want to know what to do if you are facing discrimination visit the Know Your Rights section of our website.
Resources
Please join Hep Free Hawai’i, ACLU Hawai’i, the National Task Force on Hepatitis B: Focus on AAPIs, Hep B United, and Hepatitis B Foundation on October 15th at 6PM ET to address hepatitis B discrimination among health care students. Dr. Chari Cohen, Senior Vice President of the Hepatitis B Foundation and Taylor Mangan, University of California President’s Public Service Law Fellow at ACLU Hawai’i will discuss hepatitis B related institutional discrimination against health care students, current protections and recommendations in place to protect health care students from discrimination. Register here.
The Hepatitis B Foundation’s website has an entire page focused on the rights of individuals living with hepatitis B. Check it out each section:
Moraras, K., Block, J., Shiroma, N., Cannizzo, A., & Cohen, C. (2020). Protecting the Rights of Health Care Students Living With Hepatitis B Under the Americans With Disabilities Act. Public Health Reports, 135(1_suppl), 13S-18S. https://doi.org/10.1177/0033354920921252
Author: Evangeline Wang, Program Coordinator, Hepatitis B Foundation
Happy Liver Cancer Awareness Month! Your liver is an important organ for digesting food and breaking down toxins. Its main functions include: filtering blood from the digestive tract and transporting it back to the rest of the body, removing toxins from the blood, and storing important nutrients that keep the body healthy.
Hepatitis B is a viral infection of your liver that can cause serious damage over time. Chronic infection with the hepatitis B virus (HBV) can ultimately lead to scarring, cirrhosis, liver cancer, and liver failure. Liver cancer is the 3rd deadliest cancer worldwide, with 5-year survival rates of only 19%. There are few effective treatments for liver cancer, and we, therefore, must rely on prevention and early detection in order to save lives. Chronic hepatitis B infection causes approximately 78% of hepatocellular carcinoma (HCC), or primary liver cancer. The key to saving lives is ensuring that individuals infected with HBV are diagnosed and linked with appropriate care, including regular screening for liver cancer.
In the U.S., liver cancer incidence and death rates are increasing at a faster rate than any other cancer and are projected to continue to rise through at least 2030. Up to 2.2 million people are chronically infected by HBV in the U.S. and the majority is unaware of their infection. Identifying, managing and treating those with HBV infection can help prevent liver cancer in many people. Additionally, regularly screening people with chronic hepatitis B for liver cancer can aid with early detection and treatment of liver cancer. If diagnosed early, liver cancer can be treated and even cured.
Below are some practices you can easily incorporate into your daily life and routine to keep your liver healthy while living with hepatitis B.
Healthy Liver Tips
Reduce alcohol intake: Alcoholic beverages can damage or destroy liver cells and create additional health problems.
Eat a healthy diet: Increase the amount of whole foods in your diet like fruits and vegetables while decreasing the amount of refined carbohydrates (pastas, white rice, white bread), processed sugar, and saturated fats which can create a healthy environment for your liver.
Daily exercise: It is recommended for adults to exercise at least 60 minutes per day. Not only does this have many other health benefits, but it can reduce the fat surrounding your liver which can decrease your risk of liver cancer.
Avoid the use of illicit drugs: Drugs like marijuana, cocaine, heroin, inhalants, or hallucinogens put stress on your liver and reduce its functioning capability.
Wash produce and read labels on household chemicals: Pesticides and other chemicals can contain toxins which are harmful to your liver.
Incorporating these healthy practices does not have to be difficult. Choose one of the five tips that is most convenient with your current lifestyle and use it as a starting point for a healthier routine. By gradually incorporating each healthy liver tip into your lifestyle, you can reduce your risk of a negative liver outcome creating a healthier you!
Resources for Liver Cancer and Hepatitis B
Please join Hepatitis B Foundation, Hep B United and Hep B United Philadelphia’s webinar on October 20th at 3PM ET to learn more about hepatitis B and liver cancer. Dr. Kenneth Rothestein, Director of Regional Outreach and Regional Hepatology from Penn Medicine will be highlighting the importance of liver cancer screening for prevention. Register here!
The CDC’s Know Hepatitis B Campaign’s infographic, “Get Tested for Hepatitis B” encourages Asian Americans and Pacific Islanders to get tested for hepatitis B. This 2-page downloadable document is available in English, Traditional Chinese, Vietnamese and Korean languages and answers commonly asked questions about hepatitis B.
For more information about the Know Hepatitis B Campaign, visit the campaign website.
Author: Evangeline Wang, Program Coordinator, Hepatitis B Foundation
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!