Hep B Blog

Category Archives: Hepatitis B Advocacy

CHIPO Partner Highlight: Great Lakes Peace Centre

 The Coalition Against Hepatitis for People of African Origin (CHIPO) is a national community coalition that is co-founded and led by the Hepatitis B Foundation, comprised of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the US. Recently, CHIPO has started to expand its reach to communities in Africa and has welcomed new partners from the Continent. This month, in honor of Minority Health Month, we highlight a partnership between CHIPO and Great Lakes Peace Centre (GLPC) in Kasese, Uganda. CHIPO has recently provided GLPC with educational resources that are tailored for African communities, which GLPC is translating into local dialects and will use in a strategy to raise awareness and provide education about hepatitis B, primarily to rural women and youth in Kasese District. A recent interview with Bwambale Arafat, Head of Health and Policy Officer at GLPC, sheds light on some of the significant barriers that impede hepatitis B screening, prevention, and care in Uganda (and much of the African continent) and showcases some of the extraordinary work of GLPC on a host of issues, of which viral hepatitis is just one.

 CHIPO: Can you share a little bit about yourself? What is your connection to hepatitis?

Arafat: I work with the Great Lakes Peace Centre, which is a grassroots, youth-led organization, here in Kasese District, a rural area in Rwenzori region, western Uganda (near the border of the Democratic Republic of Congo, about 400 kilometers from the capital city of Kampala). Most of our work with hepatitis B is focused on raising awareness and providing education about the virus to women and youth in the area, who are the most important people to reach. We also engage in a lot of advocacy initiatives, as well as efforts to lower stigma and discrimination.

My personal connection to hepatitis B is the diagnosis of my uncle with hepatitis B and liver cancer and his death shortly thereafter. There was widespread misconception that he had been bewitched and poisoned by relatives. I have been working to try to dispel some of these myths and provide accurate information ever since. In 2021, I was honored as a World Hepatitis Alliance champion for hepatitis outreach work during COVID-19. I and GLPC are deeply committed to the cause of hepatitis B elimination by the year 2030.

CHIPO: Congratulations on the well-deserved honor! Can you share a bit about the work and goals of your organization?

Arafat: Due to its proximity to the Democratic Republic of Congo, Kasese feels the effects of war and conflict acutely, and the area is quite fragile. Peace and Conflict Resolution is the first of three priority areas for GLPC and is driven forward by the efforts and demographic dividends of young people. Health Promotion and Public Policy is the second priority area, which encompasses awareness and education about hepatitis, HIV/AIDS, malaria, and tuberculosis prevention, screening, and treatment, as well as nutrition assessments, counseling, and support, especially for mothers of children under five years of age. Water, Sanitation, and Hygiene is another topic of top concern, and initiatives in this sector included a hand-washing campaign for COVID-19. The last focus area under the Health Promotion umbrella is adolescent sexual and reproductive health, and especially promotion of education equity for menstruating young women and ending of stigma and discrimination around this, thus keeping young women in school for longer. Social empowerment happens through education, and people can donate to keep girls in school with financial support. The third organizational priority is to focus on climate change – GLPC distributes solar panels through public and private partnerships, as a great step toward sustainability and protecting the planet we share.

 CHIPO: What are some of the biggest barriers to hepatitis screening, prevention, and care in your community?

Arafat: As I mentioned above, the widespread presence of myths and misconceptions about hepatitis B, especially about transmission, is one of the biggest culprits in perpetuating the stigma and discrimination that still dominate the hepatitis B conversation and presents one of the biggest challenges to increasing screening and vaccination. Some ways that we are working to dispel some of these misconceptions are through our social media platforms, which all have huge followings by younger people. However, attitudes are very slow to change, and this is why the involvement of religious and community leaders in spreading accurate information and shifting the narrative around viral hepatitis is so important, and why personal testimonials and connections with people who are living with hepatitis B hold such power.

Other challenges to screening, prevention, management, and treatment of hepatitis B in Kasese include the enormous out-of-pocket costs of diagnosis and testing; the persistent lack of awareness among the general population – primarily lack of information, education, and communication; the lack of logistics and supplies for things like test kits and cold chain storage for vaccines; and the long distances and mountainous topography that make access to health facilities in larger cities difficult. Additionally, funding and resources from the government and other stakeholders remain inadequate, making it difficult to ensure that services will be available when they are needed. The Minister of Health and government of Uganda have created infrastructure to help with vaccination (they have provided 1 million USD for this reason), have recommended universal adult vaccination, and have also waived fees for viral load investigation. However, things like ultrasound scans, complete blood count panels, and other tests to determine when someone would need treatment for hepatitis are not subsidized. The government could also do a great deal more in terms of increasing awareness, investing money into management and care, prioritizing the birth dose of the vaccine to prevent mother-to-child transmission of hepatitis B, and addressing the stigma and discrimination so many living with hepatitis B routinely face.

Many infants also continue to be delivered by traditional birth attendants, who are not trained in preventing mother-to-child transmission of hepatitis B, and knowledge among community health workers in general is very low. There is also inadequate data and surveillance of the disease, and no records of screening, vaccination, or care are kept in the Health Management and Information System. There is a lack of clear guidelines around testing for the medical community and a lack of materials that can help to raise awareness and combat stigma.

We also really need to integrate hepatitis services into those that exist for HIV/AIDS. Machines that are used to test for HIV/AIDS can be recalibrated to also test for hepatitis. Electronic Health Records can be upgraded to include hepatitis B status. As awareness grows, patients can also hold health workers accountable for hepatitis testing, as they do now for HIV and syphilis. This conversation needs to start with the people themselves.

 CHIPO: How are you planning to use CHIPO’s materials and resources over the next year?

Arafat: We have a saying in Kasese: “When you talk in a foreign language, you talk to people’s heads. When you speak in their language, you speak to their hearts.” Our first priority is to translate CHIPO’s flip charts, takeaway cards, and guides for health educators into our local dialects of Lhukonzo and Runyakitara, in order to reach as many community members and stakeholders as possible. We will host four community educational events using the materials and in these events, will focus on hepatitis B overview, causes and prevention, common myths and misconceptions, and unmet needs in this area. These sessions will be moderated by NoHep Champions and Hepatitis Ambassadors, so that the community can hear from people with direct experiences of the disease and their voices can be amplified.

Additionally, we will host NoHep Champion Table Talks, which are informal discussions that will consist of young people living with HBV and pregnant women, who will share stories and build community. These talks will touch upon how people are doing physically, as well as with handling stigma, and will identify needed services, insights which can help to determine future programming and practices. These talks will also emphasize that no one is alone, and that hepatitis B is not a death sentence, but that people with HBV can live long and healthy lives. We will also convene community barazas (gatherings) with local leaders, including social workers, health workers, village health teams, hepatitis ambassadors, local council, and cultural, community, and religious leaders to conduct trainings on delivery of the educational materials. These will provide an opportunity to educate and invite open discussion. We will also hold continuing education courses on hepatitis B for healthcare professionals at health facilities, including community health workers, village health teams, and para-social workers. Finally, we are planning to compose a radio jingle related to hepatitis B that will be heard around the district.

Only 1 in 10 people in Kasese know their hepatitis B status. These materials can go a long way in changing that.

CHIPO: Thank you so much for your valuable insights and for all of the work you are doing! Do you have any final thoughts or messages that you would like to share?

Arafat: I would just like to mention our No Hep Mamas campaign, which we are also implementing for the prevention of mother-to-child transmission of hepatitis B. We are working to bring this campaign to more health facilities, and share this information in prenatal care settings, as stopping the cycle of transmission is truly the best way to eliminate hepatitis B.

CHIPO: Thank you so much again for your time today, Arafat, and we look forward to more inspiring work from you in the future!

Arafat: Thank you very much!

Hepatitis B Discrimination Registry

 

Despite almost 300 million people living globally with the world’s most common liver infection, hepatitis B remains stigmatized and those living with it can still face discrimination from various sources. Each year, the Hepatitis B Foundation answers numerous calls from around the world from people who have faced school, workplace, and travel challenges due to their hepatitis B status. These challenges are typically rooted in misinformation, outdated laws or guidelines, stigma, and an overall lack of awareness.

The Hepatitis B Foundation has been a longtime advocate of people living with hepatitis B. In fact, our advocacy successfully made hepatitis B a protected condition under the Americans with Disabilities Act (ADA) in the United States. We also support programs to fight discrimination faced by people living with hepatitis B when applying to schools, jobs, or accessing affordable medicine.

We also compiled a report called “Health Insurance Costs Impacting Shoppers Living with Hepatitis B (2020) to help people living with hepatitis B in the U.S. make informed decisions when choosing a health insurance plan. It can also be shared with policymakers to inform them of potentially discriminatory benefit plan designs in various states.

Most recently, Hepatitis B Foundation is excited to announce the launch of our discrimination registry! The purpose of this registry is to document and track discrimination related to hepatitis B.  Hepatitis B discrimination is described as unjust, unfair, or prejudicial treatment of persons on the basis 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.

How to Share Your Experience

Use the registry link here and fill out the questions accordingly.

  1.  In the first section, we ask about your demographics which you can always select prefer not to answer for any of the questions.
  2. In the second section, we ask about your hepatitis B discrimination experience. In the third section, we offer additional support.
  3.  If you are located in the United States and are experiencing discrimination due to your hepatitis B status we can assist you to file a claim with the Department of Justice.

Other Discrimination Resources

Check out our Know Your Rights page. This page will help guide you through steps if you are experiencing discrimination in various institutional settings.

We have sections for:

  1. U.S. Schools and Education
  2. U.S. Employment
  3. U.S. Military
  4. U.S. Access to Medication
  5. Immigrant and International Issues

If you have any questions or concerns please email discrimination@hepb.org

Author: Evangeline Wang

Contact Information: info@hepb.org

Celebrate International Day of Happiness

 

 

 

Saturday, March 20th, marks International Day of Happiness! The United Nations established this day to recognize “the need for a more inclusive, equitable, and balanced approach to economic growth that promotes sustainable development, poverty eradication, happiness, and the well-being of all peoples.” In 2015, the United Nations launched the Sustainable Development Goals which seek to end poverty, reduce inequalities, and protect our planet which all leads to well-being and happiness.

Action Items to Celebrate International Day of Happiness

Celebrate Health and Happiness –

  1. Share a meal with family and friends today! It might not be the best idea to gather in-person during a global pandemic, but you can do this virtually over Zoom or another video sharing platform like Google hangouts or Facetime. Virtually surround yourself with the people you love by sharing a liver-friendly meal. A liver-friendly meal should include lean proteins, fruits and vegetables, and less processed foods. If you plan to gather in-person, a socially-distant meal is recommended. For example, you can use outdoor spaces like parks or backyards to gather and sit an appropriate distance away from each other.
  2. Mental health is just as important as physical health. Research studies have found people living with hepatitis B experience higher rates of depression and anxiety than the general population. This comes as no surprise as there is no cure (although scientists are tiredessly working hard to find one), people with hepatitis B face stigma and discrimination, and when people disclose we risk facing rejection from our peers, friends, and family. But International Day of Happiness does not focus on that. Instead, we will focus on the things, activities, and people who make you happy! This could be taking a walk in the park, baking or cooking for your family, gardening, or crafting. Being mindful and taking time for yourself to do the thing you enjoy about life is important for your happiness. We know a hepatitis B diagnosis does not define you nor defines your happiness. If you want to share want makes you happy, you can through our new campaign, More Than B! Check it out here.

Reduce Inequalities –

  1. Please join the Hepatitis B Foundation in calling upon all companies developing COVID-19 vaccines to include people living with hepatitis B and liver disease in their clinical trials, and to make the resulting sub-group data publicly available. The inclusion of these groups in clinical trials will help improve access to approved vaccines and will broaden trust and acceptance of the vaccines, especially among those who are unsure if they should receive any COVID-19 vaccine. We must account for groups who may be more susceptible to severe illness from the coronavirus. Data is one of the most powerful tools we have to build vaccine confidence amongst vulnerable populations, and one we must fully utilize in order to earn the trust of concerned communities. We must ensure that the voices of the 300 million people around the world who are living with hepatitis B are not forgotten. Add your voice here!
  2. What better way to celebrate than to learn more about your own and your family’s health and to contribute to better health and well-being for your whole community, both now and in the future? The All of Us Research Program is working to make health and medical research more diverse, inclusive, and representative of the actual population in the United States, so that doctors can move toward precision medicine and away from making diagnosis and treatment decisions based on an “average” patient. Participation is especially important for Asian, Pacific Islander, and other community members, who are the least represented. By enrolling in the study, you can get information about your own health and genetics, help move science forward, and even play a role in guiding the research itself! The program holds itself to the highest standards of confidentiality and you can stop participating at any time. Help make the world a healthier and happier place! Learn more and sign up at www.joinallofus.org.

CHIPO Is Looking for New Members!

By Beatrice Zovich

 

 

 

 

 

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!

Correctional Facilities and Hepatitis B

 

People experiencing incarceration in correctional facilities face a disproportionate burden of hepatitis B. This is due to potential increased exposure to high-risk individuals, including people who inject drugs or exchange sex for money or drugs.1 This blog will discuss the prevalence of hepatitis B in individuals experiencing incarceration in the United States and globally, risk factors for infection, and recommendations for policymakers, public health professionals, and correctional facilities.

Prevalence in The United States

The Centers for Disease Control and Prevention (CDC) estimates 850,000 to 2.2 million individuals are living with hepatitis B in the United States.2 Of those individuals, an estimated 0.9% to 11.4% for HBsAg (active, infectious HBV) and 6.5% to 42.6% for HBcAb (ever infected) of people experiencing incarceration are living with hepatitis B.2

Prevalence Internationally

Researchers have conducted various studies in different countries to determine hepatitis B prevalence. For example, a study in Iran found a prevalence of HBV DNA in incarcerated individuals at 2.1%.1  Another study in Mexico City tested over 15,500 men experiencing incarceration and almost 1,800 women experiencing incarceration and found the rate of HBcAb among men was 2.8% and among women, 3.0%. The rate of HBsAg was 0.1% among men and 0.3% among women.1

Risk Factors

Hepatitis B is transmitted through blood, semen, and other bodily fluids.1  Routes of transmission among incarcerated individuals include sharing needles and cookers or other injection drug paraphernalia, sharing tattoo paraphernalia, sharing razors, and having unprotected sex with someone living with hepatitis B.3  Because of policies in the United States criminalizing injection drug use and sex work, correctional facilities are more likely to have higher concentrations of individuals engaging in these risky behaviors. Additionally, sterile equipment is sometimes inaccessible and sharing drug injection equipment is common in correctional facilities which contributes to an increased risk of individuals contracting hepatitis B while experiencing incarceration.3

Recommendations

U.S. Preventive Services Task Force (USPSTF) recommends hepatitis B screening for all high-risk adult individuals which include people experiencing incarceration. However, The Hepatitis B Foundation urges a recommendation for universal screening because it would allow for individuals experiencing incarceration to lower their risk of contracting hepatitis B in correctional settings.

Opt-out vaccine programming is another strategy that can help to prevent the spread of hepatitis B in correctional facilities. However, it is also important for individuals at correctional facilities to be screened before they are vaccinated, to identify those who are already infected. Additionally, when public health professionals implement opt-out hepatitis B vaccination and/or screening programs in correctional facilities, they must ensure clear communication so that program recipients understand what they are being screened/vaccinated for, and that testing/vaccination is voluntary.4 Being diagnosed with a chronic infectious disease can be daunting, and some would rather not know their status, which is important to recognize and respect. Public health professionals also need to recognize the challenges associated with designing vaccination programs in correctional facilities. It is important to design a sustainable program which emphasizes continuous medical care for individuals who test positive for hepatitis B throughout incarceration, even with challenging situations like transfers, and reintegration back into their communities.1

Correctional facilities should consider providing treatment options for people experiencing addiction as well as utilizing a harm reduction approach to provide sterile injection and tattoo equipment to reduce the risk of hepatitis B transmission.1

References

  1. Smith JM, Uvin AZ, Macmadu A, Rich JD. Epidemiology and Treatment of Hepatitis B in Prisoners. Curr Hepatol Rep. 2017;16(3):178-183. doi:10.1007/s11901-017-0364-8
  2. https://www.cdc.gov/hepatitis/hbv/hbvfaq.htm
  3. Gupta S, Altice FL. Hepatitis B virus infection in US correctional facilities: a review of diagnosis, management, and public health implications. J Urban Health. 2009;86(2):263-279. doi:10.1007/s11524-008-9338-z
  4. Rosen DL, Golin CE, Grodensky CA, et al. Opt-out HIV testing in prison: informed and voluntary?. AIDS Care. 2015;27(5):545-554. doi:10.1080/09540121.2014.989486

 

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

Hepatitis B Foundation Introduces 300 Million Reasons Movement

By Beatrice Zovich

The Hepatitis B Foundation is excited to launch a new movement called 300 Million Reasons, named for the almost 300 million people worldwide who are living with hepatitis B. The goal of this movement is to improve awareness about hepatitis B and liver cancer worldwide, to promote engagement of key stakeholders, and to empower people impacted by hepatitis B across the globe to become vocal advocates. We want to amplify the voices and stories of the millions of people directly affected by this disease, in order to make sure that hepatitis B is granted the funding, attention, and serious consideration that it deserves. The 300 Million Reasons movement will be officially launched in July of 2021, in time for World Hepatitis Day, but we wanted to begin sharing resources and information now. 

This movement is divided into four branches: B Informed, B Connected, B the Voice, and B the Change. Each of these arms is described below. 

B Informed

Hepatitis B can be prevented, treated, and managed. The B Informed branch of the 300 Million Reasons movement involves raising awareness about hepatitis B and liver cancer, providing accurate information, dispelling myths and misconceptions, decreasing stigma and discrimination, and providing simple hepatitis B educational tools, which will focus on transmission, prevention, liver cancer screening, and living with chronic hepatitis B. We have created a free and downloadable social media toolkit that can help spread the word about statistics, vaccines, testing, monitoring and care, symptoms, blood tests, acute vs. chronic hepatitis B and more. Check it out today! 

B Connected

You are not alone! The B Connected arm of 300 Million Reasons works to increase access to clinical trials, expand global connections to support people living with hepatitis B and their loved ones around the world, establish international peer mentoring programs, and create a social network and further community engagement opportunities for people impacted by hepatitis B. This branch of the movement will be modeled after current coalition work that has been done with Hep B United and the Coalition Against Hepatitis in People of African Origin

B the Voice

Your voice matters! The B the Voice component of the 300 Million Reasons movement is focused primarily on international storytelling and elevating the voices of those living with and affected by hepatitis B around the world. Stories of discrimination, stigma, screening, diagnosis, treatment, supporting community and family members, personal and larger-scale successes, setbacks and victories – all are important to share and learn about in order to raise awareness, inspire change, and eventually find a cure. Do you have a story to share? We would love to read it! Share your story today using this link

B the Change

Stand up, speak out! B the Change aims to increase activism among those living with hepatitis B and their loved ones and to use this as a tool to advance the cause of increasing knowledge about and support for hepatitis B among legislators and policy-makers. It will include national and international community ambassadors, strong relationships with the World Hepatitis Alliance and other key partners, outreach to people living with hepatitis B who have not had prior involvement in this effort, and advocacy training and opportunities. With knowledge can come action – let’s build a strong communication network to spread the word and B the Change to create a world that is Hep B-free! Become a hep B advocate today by joining our Action Center

The 300 Million Reasons movement will continue to grow and expand over the coming months and years, as more materials and resources are developed and disseminated. We hope you will continue to stay tuned on our website for updates and that you will join us in taking steps toward shining a light upon, and eventually eliminating, hepatitis B! Join the movement today!

Eighth Annual Hep B United Summit a Success!

Hep B United is very pleased to report that the eighth annual (and first virtual) Hep B United Summit was a great success! With over 200 attendees from around the US, the summit brought together partners – both new and familiar – to discuss and collaborate on the successes and challenges of the past year, and strategies to move forward toward the elimination of hepatitis B.  

The theme of this year’s summit was “Standing Up for Hepatitis B: Creative Collaborations to Amplify Awareness, Access, and Equity.” The event included many exciting sessions on topics such as progress toward a hepatitis B cure; strategies for providing hepatitis B services in the time of COVID-19; federal updates on hepatitis B; methods for incorporating hepatitis B into viral hepatitis elimination planning efforts at state and local levels; the path to universal adult hepatitis B vaccination; expansion of hepatitis B outreach in non-traditional settings, such as pharmacies, harm reduction centers, and correctional facilities; the pandemic of structural racism and how to bridge gaps in healthcare; and elevating the patient voice to move elimination efforts forward. The event included a poster session with over 20 submissions from presenters around the country, ranging from medical students to organizational partners, and covering a diverse and comprehensive array of topics related to hepatitis B. 

The virtual platform offered a dynamic and engaging experience, with opportunities for networking, game participation, social media involvement, and learning. The Summit concluded with an award ceremony in which nine Hepatitis B Champions and a Federal Champion were honored for their efforts and dedication to hepatitis B advocacy, awareness, prevention, and elimination efforts over the past year. 

 As in previous years, the Summit provided an opportunity for colleagues to gather and to exchange innovative and creative ideas that will help to advance hepatitis B elimination and elevate hepatitis B as an issue deserving of widespread national attention. Recordings of the Summit are available on Hep B United’s YouTube channel – check them out today!

Humans Rights and Hepatitis B

Tomorrow, December 10th is Human Rights Day! Every December, this day “proclaims the inalienable rights which everyone is entitled to as a human being – regardless of race, colour, religion, sex, language, political or other opinion, national or social origin, property, birth or other status1” This year’s theme is: Recover Better- Stand up for Human Rights as it relates to the impacts of the COVID-19 pandemic. This day will emphasize the importance of human rights in recovery efforts to “create equal opportunities for all, address the failures exposed and exploited by COVID-19, and apply human rights standards to tackle entrenched, systematic, and intergenerational inequalities, exclusion and discrimination1”.

Impact of COVID-19, Hepatitis B, and Human Rights

The World Health Organization (WHO) states that people living with underlying health conditions such as hepatitis B can put them at a greater risk for a poorer COVID-19 prognosis2. COVID-19 has paused many organizations’ outreach and work which disproportionately affects already marginalized populations. Additionally, in the United States, COVID has raised unemployment rates to an estimated 25%3. Organizations are unable to provide viral hepatitis programs which can negatively affect people living with hepatitis B, like knowing their status, linkage to care, and management of their disease. Additionally, if people are experiencing unemployment and living with hepatitis B, their healthcare costs could significantly increase. This might make it difficult for people living with hepatitis B to effectively manage their disease. These situations directly violate the fundamental human right to healthcare – people should have access to healthcare services without financial hardship. With COVID-19 impacting organizations like the Hepatitis B Foundation, what are we doing to address these situations?

 How Are We Addressing Inequalities?

 The Hepatitis B Foundation is committed to human rights and the rights of people living with hepatitis B prior to COVID-19, during COVID-19, and will continue to do so after. The Foundation has advocated for persons living with hepatitis B and experiencing discrimination. We are proud to have had a part in a landmark settlement by the U.S. Department of Justice in 2013, which ruled that a medical school had violated the Americans with Disabilities Act (ADA) when they denied applicants because they had hepatitis B. Take a look at our Know Your Rights Section if you are experiencing discrimination while living with hepatitis B. The Hepatitis B Foundation also launched a new tool to assist people living with hepatitis B in making decisions on health insurance. The report provides health insurance shoppers living with hepatitis B with key information – including a checklist of questions to consider and a list of insurance companies in the analyzed states that exhibited discriminatory practices. Health insurance shoppers can take a closer look at the specific pricing tiers into which companies and plans place their hepatitis B treatments, and what additional costs may be included.

Currently, Hep B United Philadelphia, a coalition member of Hep B United, a national coalition founded under the Hepatitis B Foundation, is committed to serving the Greater Philadelphia Community during the pandemic. Hep B United Philadelphia rolled out a “contactless screening” program which allows individuals to get free hepatitis B testing. They have also hosted hepatitis B educational sessions over Zoom in multiple languages. Recordings and resources are available for use here.

 

References

  1. The United Nations
  2. The World Health Organization
  3. The Pew Research Trust

 

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

Recap of NAIRHHA Day 2020 Celebration

 

 

 

 

By Beatrice Zovich

On Monday September 21st, a virtual celebration was held in honor of the sixth anniversary of National African Immigrant and Refugee HIV and Hepatitis Awareness (NAIRHHA) Day. This day, which itself is commemorated on September 9th, was created to build awareness and dismantle stigma around HIV and viral hepatitis in African immigrant and refugee communities. It takes place in September because this is the month that has been designated as National African Immigrant Month (NAIM) in the United States to celebrate the diverse and remarkable contributions African immigrants have made to enrich the United States, in spheres ranging from sports to writing to politics.

The virtual celebration that occurred last Monday included a discussion of the history of NAIRHHA Day and how it came to exist in its present form, a conversation with a hepatitis B advocate who is living with the disease, discourse about the importance of NAIRHHA Day on the national level and implications for making it a federally recognized day, and trivia questions about HIV and hepatitis B.

History of NAIRHHA Day: The Journey from 2014 to Present

Moderator: Chioma Nnaji, MPH, MEd, Program Director, Multicultural AIDS Coalition
Panelists: Augustus Woyah, Program Officer for Minority AIDS Initiative, Maryland Department of Health
Amanda Lugg, Director of Advocacy and LGBTQ Programming, African Services Committee

The idea for NAIRHHA Day was first conceived in 2006 at a convening of the Ethiopian Community Development Corporation in Washington, DC, at a session sponsored by Office of Minority Health about HIV in African immigrant communities. Conferences started to occur, primarily in the Northeast, although there was also interest in Atlanta and Seattle. It seemed that an opportunity had finally become available for advocates, researchers, and providers to all come together and focus on data collection, community mobilization, and policy work around HIV and viral hepatitis in African immigrant communities. The African National HIV/AIDS Alliance was established in 2010 and awareness days started in 2012 (Augustus played a large role in this). In 2014, Chioma Nnaji became connected to Sylvie Bello, the Executive Director of the Cameroonian Association in Washington, DC, and they, along with Amanda and Augustus, worked to get NAIRHHA Day off the ground. Chioma has largely spearheaded efforts to have NAIRHHA Day recognized nationally.

In terms of some of the challenges that have and continue to exist around NAIRHHA Day, obtaining community leadership and organizational buy-in, as well as national attention, are at the forefront. Social media and other digital platforms have been widely used in order to amplify the cause and try to obtain federal recognition. Additionally, maintaining relationships with government agencies has been quite difficult and has become a clash of visions of sorts. There is a strong belief that NAIRHHA Day should be a community-driven effort, but government agencies often have their own priorities, which can be distinct from those of the community and grassroots organizers. This is not to discount the government and organizational partners that are still involved, however, including NASTAD, the Hepatitis B Foundation, CHIPO, CHIPO-NYC, and Africans for Improved Access at the Multicultural AIDS Coalition. Another challenge has been reinforcing the distinction between African immigrant and African American communities and not treating the Black community as a monolith. Drawing this distinction in both data and policy remains difficult, thus often rendering African immigrant communities invisible.

When pondering what areas could use improvement going forward, a number of different items were considered. These included incorporating COVID-19 into the conversation, along with viral hepatitis and HIV; addressing social and environmental determinants of health that lead to the over-prevalence of both infectious and non-communicable diseases in minority, and particularly African immigrant communities; adhering to the primary goal of community mobilization and including advocates and researchers to influence policy that provides linguistically and culturally appropriate services that address the most pressing issue of stigma; securing national attention; and obtaining resources. It is critical to remember that advocacy never ends, the need to magnify work and amplify voices is always present, there is no room for complacency, and there exists intersectionality in all issues (social and health justice are all-encompassing).

#justB Storyteller Interactive Discussion

Moderator: Farma Pene, Community Projects Coordinator in Viral Hepatitis Program, New York City Department of Health & Mental Hygiene
#justB Storyteller: Bright Ansah

In this session, Bright spoke about his experience with living with hepatitis B, including his diagnosis, treatment, and communication with his family. He spoke about being able to put a face to hepatitis B, which has helped many people and also allowed him to build strong relationships with a broader community. Bright found out about his status in 2014 and initially felt very lost. The first couple of years were a big struggle, as he did not want to worry his family and it took a while for him to come to peace with his diagnosis. This peace eventually came from a lot of extensive research, after which he found out that hepatitis B is not a death sentence and can be managed very well. He then started to think about what he could do to prevent someone else from becoming “a statistic.”

When asked what message he would share with newly diagnosed people, Bright stated that stress and anxiety are normal, but you are not alone. Every day, people find out they are infected. Bright has given his contact information to many different people and he emphasized the incredible importance of having a support system in place. When asked about how he overcame stigma and barriers, Bright replied that the biggest barrier is the mental hurdle. It took him about two years to not feel overwhelmed. Bright does still struggle with feeling rejected from clinical trials and finds this very frustrating – he still feels like he is being punished for having chronic hepatitis B.

The best advice that Bright can offer is to always be your own advocate and do your own research. If the first doctor or liver specialist that you find does not take you seriously or you feel that they are not doing enough for you, you do not need to stay with them and you can absolutely find another doctor. Bright went through this process himself and eventually found a doctor he likes at Johns Hopkins, through a friend of his. This can be a challenge with language barriers, but there are organizations that can help and there is a Specialist Directory tool on the Hepatitis B Foundation website, a resource that Bright stated he found very helpful, along with the website of the National Institutes of Health (NIH). Farma reiterated that the HBF website is a great place to visit to understand lab results in plain language, and offers a good collection of resources for family and community members of people living with hepatitis B. Bright finds that the most important questions to ask are: What exactly is your status and viral load? What should reasonable expectations for your life and health be? Is treatment appropriate and if so, which one? It is crucial to establish mutual respect with your doctor, and to iterate what expectations you have for your doctor as well. The most important messages are: Reach out. Ask questions. Stand up for yourself. You are not alone.

The Important Role that NAIRHHA Day Plays from a National and Policy Prospective

Moderator: Chioma Nnaji, MPH, MEd, Program Director, Multicultural AIDS Coalition
Panelists: Boatemaa Ntiri-Reid, JD, MPH, Hepatitis Director, NASTAD
Jennease Hyatt, Community Liaison for Boston/New England, GILEAD

The final conversation focused on why NAIRHHA Day should become a nationally recognized holiday. VIral hepatitis is the seventh leading cause of death globally. Nineteen million African adults are living with hep C, and 5-8% are living with hep B. Hep B and HIV need to be considered part of the health portfolio of African immigrants, with care taken that this does not compound stigma. NAIRHHA Day is really an opportunity to focus on this community specifically. You get things done by doing them yourselves and we are who we’ve been waiting for.

There is a strong need for a multi-faceted approach to this work and for local, state, and national partnerships. African immigrants need to be at the forefront of the HIV/AIDS conversation. In Massachusetts specifically, over half of new HIV infections are in immigrant communities: These communities need to be leading the conversation. In terms of the role that government agencies play in NAIRHHA day, this needs to be more than a supportive role. We need to talk about novel approaches. We know that there are healthcare disparities. We need to consider how to use funding to build capacity and engagement, and make sure this work moves forward. This should include counting in community members and small businesses and bringing people to the table who are not usually there. The community really wants to be engaged. Promoting testing and awareness at soccer games, for example, is a great idea. We need strong partnerships and leadership from the beginning and to determine different approaches and thus different outcomes. Community members are the experts and we need to treat them as such.

Across the country, there are jurisdictions that have a prevalence of 40,000 people living with hepatitis in a state and viral hepatitis staff have teams of 1-7. Local and state health departments have more of a role to play. CDC publishes a list of viral hepatitis coordinators by state. It would be great to close the gap with them and discuss more about what they are doing generally and how to get them more involved in NAIRHHA Day specifically. In thinking about a vision for NAIRHHA Day next year, thoughts included that everyone who serves African immigrant communities (including health centers and multi-service organizations) needs to see themselves as part of the solution. Additionally, federal representation should be part of NAIRHHA Day next year.

Trivia and Conclusion

The event concluded with trivia questions about HIV and hepatitis B prevention, testing, and treatment. Amazing music was provided by DJ WhySham and Laura O (@LauraO_TV) served as an excellent moderator. Thanks to everyone who participated and we look forward to another wonderful event next year!

Be the Voice Story Bank Launch

 

 

What is B the Voice Story Bank

The Hepatitis B Foundation today announced the launch of its B the Voice Story Bank. Building upon the success of our national #justB campaign – launched in partnership with StoryCenter and AAPCHO in May 2017 – we are excited to expand our storytelling efforts internationally. Almost 300 million people worldwide live with chronic hepatitis B, but so many of their stories remain untold. Often this is due to stigma, fear of discrimination, lack of community awareness or understanding of the disease, or lack of support for those wishing to speak out publicly about hepatitis B. The new B the Voice Story Bank provides an online platform for people living with hepatitis B, their families, and community health workers and health care providers to share their first-hand knowledge and experiences with a global audience.

Documenting and sharing the impact that hepatitis B has on individuals, families, and communities around the world is essential in keeping up the momentum to find a cure for hepatitis B and to achieve the global elimination targets set by WHO to be achieved by 2030.

Why is B The Voice Story Bank Important?

“This new program provides many more people with the chance to tell their stories about living with hepatitis B around the world, and the Foundation and our partners will continue sharing this compelling content through our social media and other means” – Chari Cohen, DrPH, MPH (Senior Vice President, Hepatitis B Foundation)

“Speaking out relieves one from self-stigma and denial, but more importantly creates room for one to advocate towards changing something for the better. When you keep silent, the people in power will assume everything is okay until one comes out to challenge the status quo… I also want people to know that while Hepatitis B is a silent killer, one can live a positive and productive life as long as one knows early and follows the doctors’ advice.” -Kenneth Kabagambe, Director, Africa Hepatitis Initiative (Kampala, Uganda)

“Centering the voices of people living with hepatitis B is critical in raising awareness, combating stigma and discrimination, and encouraging more people to speak out or take action in other ways.” “That’s true whether it means getting tested for hepatitis B, talking to a doctor, educating family or community members about prevention or advocating for resources and policies to support countrywide hepatitis B elimination.” – Rhea Racho, MPAff (Public Policy and Program Manager, Hepatitis B Foundation)

 How To Submit Your Story

To submit your story to our B the Voice Story Bank, visit: https://www.surveymonkey.com/r/bthevoice.

Please submit your story whether it’s about diagnosis, living with hepatitis B, access to care and treatment, stigma and discrimination, education and advocacy, support and caregiving, service and programs, or other topics related to hepatitis B. Feel free to answer the questions or write your own narrative. The questions are merely there for guidance – do not feel obligated to answer all of them. We also encourage you to upload a photo of yourself if you are comfortable doing so.

How Will My Story Be Shared?

 The content you submit through the online form will first be reviewed by HBF staff. You will then be contacted via email if your story is selected for the B the Voice Story Bank. We may feature your entire story or pick out a few quotes to feature on HBF’s website, blog, social media accounts, newsletters, and other channels. Your first name (there is also the option to remain anonymous) and photo (if you choose to submit one) will be published along with your story. You may also choose to share additional details about yourself such as which country you are from, your age, and if you are affiliated with an organization – but sharing these details is optional.

Examples of Shared Stories