Hep B Blog

Category Archives: 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!

Happy Hepatitis Testing Day

May 19th is national Hepatitis Testing Day! Today we raise awareness about viral hepatitis and encourage people to know their status. More than half of the people living with viral hepatitis in the U.S. do not know their status, so if you do not know your status, get tested!

Since 2013, the United States has officially observed May 19th as Hepatitis Testing Day. With over 2.4 million people living with chronic hepatitis B in the United States and 300 million people living with it globally, it is so important to know your status! Additionally, hepatitis B is known as a “silent infection” which means that you do not know you have the disease until it has done major damage to your liver. Luckily, with hepatitis B testing, you can find out your status and take control of your health!

Hepatitis B Testing

The hepatitis B test is a simple blood test that can be done at your doctor’s office or local care clinic. The hepatitis B blood test requires only one sample of blood and your health care provider should order the “Hepatitis B Panel,” which includes three parts. You and your health care provider will need to know all three test results in order to fully understand whether you are infected, protected or still at risk for a hepatitis B infection. Remember to ask for a copy of your hepatitis B blood test results so that you fully understand which tests are positive or negative.

Interpreting Results

Your results should include HBsAg (hepatitis B surface antigen), HBsAb (hepatitis B surface antibody), and HBcAb (hepatitis B core antibody). Below is a chart to help you interpret your results!

Newly Diagnosed

Here are some next steps if you have received your test results and tested positive for hepatitis B. The first thing you should know is that you can live a long and healthy life.

Next Steps:

  1. Understand your diagnosis. Do you have an acute or chronic infection? When someone is first infected with hepatitis B, it is considered an acute infection. Most healthy adults who are acutely infected are able to get rid of the virus on their own. If you continue to test positive for hepatitis B after 6 months, it is considered a chronic infection. Knowing whether your hepatitis B is acute or chronic will help you and your doctor determine your next steps. If you are unsure of what your blood test results mean, you may find Understanding Your Blood Tests helpful.
  2. Prevent the Spread to Others. Hepatitis B can be transmitted to others through blood and bodily fluids, but there is a safe and effective vaccine that can protect your loved ones from hepatitis B. You should also be aware of how to protect your loved ones to avoid passing the infection to family and household members and sexual partners.
  3. Find a Physician. If you have been diagnosed with chronic hepatitis B, it is important to find a doctor that has expertise in treating liver disease. We maintain a searchable physician directory database to help you find a liver specialist near you.
  4. Educate Yourself. Get the facts about hepatitis B, including what it is, who gets it, and possible symptoms, starting with What is Hepatitis B.
  5. Seek Support. It might be helpful to you if you seek community support. You can join Hep B Community, an online global forum dedicated to supporting people affected by hepatitis B. The Hepatitis B Foundation also lists more support groups you can check out here .

 

Author: Evangeline Wang

Contact Information: info@hepb.org

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

B Heppy- A Podcast

We are so excited to announce the launch of our podcast: B Heppy! This podcast is part of our 300 Million Reasons campaign, a movement to improve awareness about hepatitis B and liver cancer worldwide, to promote engagement of key stakeholders, and to empower people impacted by hepatitis B to become vocal advocates. There are almost 300 million people around the world living with chronic hepatitis B infection, and we want to make sure each and every voice is heard.

B Heppy addresses various topics about hepatitis B to help inform providers, persons living with hepatitis B and the general public about hepatitis B. The first episode covers the covid-19 vaccine in the context of individuals living with hepatitis B. The Foundation interviewed Robert Gish M.D., Hepatitis B Foundation Medical Director to answer questions like what is an mRNA vaccine, the side effects of the COVID-19 vaccine, and if it is safe for people living with hepatitis B to receive the COVID-19 vaccine.

Our next episode will discuss the history of the Hepatitis B Foundation as well as giving an overview of hepatitis B. We will be joined with co-founders, Joan Block, RN, BSN and Jan Witte and Senior Vice President Chari Cohen, DrPH, MPH.

We hope this podcast reminds you that you are not alone in your diagnosis! Together, we can foster a collaborative and connected global community united around all things hepatitis B.

B Heppy is available on Spotify Podcasts, Apple Podcasts, and Overcast, you can also access it here.

Author: Evangeline Wang

Contact Information: info@hepb.org

Join #MoreThanB

The Hepatitis B Foundation is very excited to announce the launch of our new campaign: #MoreThanB.  The goal of the campaign is to celebrate the lives of those living with or impacted by hepatitis B worldwide. Hepatitis B might be a big part of our lives, but we want to highlight the other aspects of our lives – our hobbies and dreams, the way we spend our time, the things that make us who we are, outside of hepatitis B.

The Hepatitis B Foundation has been a long-time advocate and supporter of individuals living with hepatitis B who express that they are more than their diagnosis. In 2008, The Foundation supported 18-year old John Ellis throughout his “Believe in the Cure” cycling tour from Pensacola to Philadelphia to raise awareness about hepatitis B. When John was diagnosed with hepatitis B as a teenager, he wanted to be “bigger” than his diagnosis, so he undertook this physical challenge, which raised $50,000 for The Foundation’s mission to find a cure and improve the lives of those affected. John helped us all learn to express how we are bigger than a  hepatitis B diagnosis.

We want you to share who you are beyond hepatitis B. Share a few sentences about your life, hobbies, work, family, friends, and upload a photo. We will turn your submissions into social media posts to share on the Foundation’s social media pages. United States respondents, please submit your profile by April 2nd to be featured during Hepatitis Awareness Month in May and international respondents, please submit by June 30th to be featured in July for World Hepatitis Day.

Take a look at the examples below:

“I am constantly learning and finding new adventures. I love to read, attend the theatre (when safe 😊), spend time with my family and dog, and find new ways to incorporate sustainability into my lifestyle. You’re most likely to find me scrolling on social media, or playing a card game with friends!”

 

“I am a wife, dog mom, marathoner and avid traveler. I am passionate about food, hiking, being in nature, exploring, public health and eliminating hepatitis B.”

 

Submit Your More Than B Profile

 

Author: Evangeline Wang

Contact Information: info@hepb.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!

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!

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

 

#ThrowbackWHD: Hep B United Summits, Advocacy Days and World Hepatitis Days Through The Years

 

While we were not able to gather together for our annual Hep B United Summit this World Hepatitis Day to discuss best practices, advocate on Capitol Hill, and innovate ideas together to improve testing,  hep B vaccination and linkage to care and treatment for hep B in our communities, we did have our Virtual Week of Advocacy. Hep B advocates emailed their Congress members to ensure policy priorities include provisions for hepatitis B elimination -specifically supporting funding for a hep B cure and CDC viral hepatitis programs.  You too can advocate for hepatitis B elimination here! The templates make it so easy!

To learn more about past  Hep B United Summits, check out previous summit agendas and presentations here.

Join us today, World Hepatitis Day, for a Twitter Storm all day long sharing  memories, pics and videos  from past Hep B United Summits,  Advocacy Days and  World Hepatitis Day events.  Tag your posts and pics with #ThrowbackWHD, #WorldHepatitisDay, and #HepBUnite. Be sure to tag @HepBUnited and @HepBFoundation on Instagram, Twitter, or Facebook!