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300 Million Reasons, About Hepatitis B, advocacy, HBV, Hepatitis Awareness Month, Hepatitis B Advocacy, Hepatitis B Awareness, Liver, Liver Health, Living with Hepatitis B, United States

#justB Storyteller David’s Advocacy Journey

 

 

 

 

 

 

 

 

 

 

David is living with hepatitis B, and he spoke about empathy and mental health as a panelist at the World Hepatitis Summit (WHS) 2024

Another World Hepatitis Summit (WHS) has come and gone, this time in Lisbon, Portugal. I previously attended the 2022 summit in Geneva and spoke during the Youth Can’t-Wait and Closing Sessions. I would like to give my thanks to the wonderful people at the World Hepatitis Alliance, for allowing me to travel and speak at this year’s summit as well.  

I spoke during a newly created session called Hepatitis and Mental Health. During this session, a video I made in collaboration with the WHA last year, was played before I spoke. It is part of the WHA “I can’t wait” series of videos, which showcase patient advocates and their journeys with patient advocacy and why they can’t wait for a world without hepatitis. I, the dedicated and powerful Shabana Begum of the UK, and the courageous and vocal Shaibu Issa of Tanzania are the first to be featured in these videos.  

I can’t wait… these words evoke dire urgency. During this summit, I felt and heard the urgency from many of the speakers, advocates, and attendees. From the opening session, it was emphasized that the world DOES have the tools and resources but DOES NOT have the required amount of political and social will to eliminate viral hepatitis by 2030. The need for person-centered and culturally appropriate approaches as being critically important was also highlighted.  

These declarations capture the moment the viral hepatitis community is currently in. Time is slipping away by the day and the people who suffer from viral hepatitis, hepatitis B and D included, cannot continue to wait in silence as they have been. Deaths from hepatitis B are still alarmingly high each year. These statistics highlight a problem of stigma and discrimination that presents differently depending on where you are located or who you are talking to. Stigma and discrimination can cause mental health problems and prevent millions of people living with hepatitis from finding their voice, feeling comfortable sharing their story, and being diagnosed. Without solving this multi-faceted problem, the goal of eliminating viral hepatitis by 2030 is just an empty platitude. 

Having the privilege and platform to speak about hepatitis and mental health during this summit was very important to me. My struggles with hepatitis B and my mental health struggles are interconnected in so many ways. That is also true for so many other patients who have struggled with poor mental health. Long before I started my patient advocacy journey, I felt voiceless. Long before I ever talked publicly about my mental health struggles, I felt voiceless.  

Empathy is a crucial piece of the puzzle for how we give those who feel voiceless the greatest opportunity to find their voice, regardless of where they are from or the stigmas that surround them. We must be empathetic when creating policies, action plans, and declarations. So many millions of people are left undiagnosed, untreated, and voiceless because of fear of the societal, associative, and personal stigma that they will go through if they seek out a diagnosis or talk about their status openly. There is still so much misinformation surrounding hepatitis and the only feasible way to fight this is by amplifying the voices of those who speak the truth about hepatitis with empathy, cultural sensitivity and appropriate.  

The symptoms of poor mental health exacerbate this feeling of voicelessness. After five years of advocacy, over a decade of therapy, and five years of being on a consistent treatment for my hepatitis B, I still struggle with clinical depression and anxiety. I will live every day with depression and anxiety in varying degrees for the foreseeable future. My mental health started to trend downward late last year. I had to find the strength to start an antidepressant medication and give it an honest try. I can happily say, that today and every day after will mark the longest I’ve been on an antidepressant (almost six months now), and I can report that it is helping me manage my mental health and to continue managing my hepatitis.  

I say all of this to highlight the connection between times in my life where I have actively been taking steps to manage my mental health and my hepatitis B. These periods overlap with each other, and they have one important thing in common. Empathy for myself and others. This is one of the strongest coping tools I have to manage my hepatitis B and my mental health. Patient health outcomes are linked to the state of their mental health and the tools and resources they are given to help manage it.  

After attending this World Hepatitis Summit, I feel a calling to act with more urgency. This isn’t an easy task. For me, it’s one of the most challenging aspects of advocacy. I have such a natural tendency to self-talk in very judgmental and negative terms. I sometimes think I’m a terrible person for not doing more and taking more time to learn how to become a more capable and productive advocate. I ask myself why I’m not having more conversations, learning about others’ perspectives, and potentially teaching someone or setting them on a path of changing their minds about hepatitis and mental health.

The desire to grow more as an advocate and connect more with others is within me, but the key to taking more action is to meet myself where I am currently and to practice self-empathy. When I speak to myself with empathy, kindness, and encouragement, I am much more likely to grow and make a positive change, even though mental health struggles.   

Most people in the world can relate to or know someone who has struggled with their mental health. This commonality between people can be a powerful tool if wielded with empathy instead of fearmongering and focusing on the most rare, violent, and negative aspects of mental health struggles. These stories fill the public, media, social media, and political discourse and create more layers of stigma (public, associative, self, provider). Changing this narrative will be a monumental undertaking but to use one of my favorite quotes, “The best time to start was yesterday. The next best time is today.” 

 

Check out David’s storytelling journey here: https://www.hepbstories.org/justb/david?rq=david

 

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Living with Hepatitis B, Uncategorized, United States

Minority Health Awareness Month: Why does hepatitis B disproportionately affect some groups more than others? 

 

 

 

 

 

 

 

 

 

 

 

Hepatitis B is a global public health crisis. While it is heavily underreported across the world, experts estimate that there are approximately 300 million people living with chronic hepatitis B. Anyone can get hepatitis B. The hepatitis B virus does not discriminate. This is why it is crucial for everyone to get tested for hepatitis B at least once in their lifetime and get the hepatitis B vaccine. 

However, some people are at a greater risk for developing chronic hepatitis B than others. This is not necessarily because some people are genetically predisposed to the virus but because of poor awareness and lack of resources to prevent or treat hepatitis B.  It is important to understand that health is influenced by many different factors including genetics, our environment, availability of resources and access to care. To fully understand the reasons behind racial and ethnic disparities in hepatitis B prevalence across the globe, we must understand the social determinants of health associated with hepatitis B testing and care.  

Differences in HBV Genotypes 

Genotypes describe the characteristics of the virus. The hepatitis B virus (HBV) contains many different genotypes, which explains why the virus impacts people in different ways (i.e., how the virus spreads to others, likelihood of developing serious liver disease, etc.). Some genotypes such as genotype A can increase the chances of chronic (long-term) infection. 

Certain HBV genotypes are more common in some regions of the world than others, which may explain why some people are more likely to experience worse health outcomes than others (Sunbul, 2014). 

 Genotype A is commonly found in the African region. Genotypes B and C are found in the Asia Pacific regions. Genotype D is less likely to lead to a chronic infection but can still result in serious liver failure without proper intervention. Genotype D is found mostly in South Asia (Pakistan and India). Source: Sunbul M. (2014). Hepatitis B virus genotypes: global distribution and clinical importance. World journal of gastroenterology, 20(18), 5427–5434. https://doi.org/10.3748/wjg.v20.i18.5427 

Social Determinants of Health 

Public health researchers call the economic, cultural and political factors that shape society “social determinants of health,” which go beyond medical care and insurance coverage. Our health is influenced by our access to education, employment opportunities, local, state and national policies, and our neighborhood and environment. (Greene at al., 2017). 

In the global context of hepatitis B prevention and treatment, some groups are at a better advantage than others. Some countries are more technologically advanced with a strong economy. This makes access to testing, vaccine, clinical trials, and treatment options much easier for some populations (though disparities still exist). Political will and access to economic resources impact what public health issues should be prioritized for in many countries. If a country has a poorly maintained economy and access to resources is limited, it is less likely to develop or sustain critical public health programs to prevent or test for hepatitis B or provide proper care for those living with hepatitis B. In some regions, access to schools and education is restricted, which impacts health literacy and access to economic mobility. Poor awareness due to low health literacy and limited knowledge about hepatitis B is usually because of overall education deficiencies. This makes it difficult for people to understand health education if they lack basic literacy skills (i.e., if they cannot read or write). In other regions, health literacy is not prioritized. Some people have better access to tools and resources that help them understand how to navigate the health care system, get medical insurance and make better decisions about their health (e.g., starting treatment or routinely getting ultrasounds to monitor liver function) (Greene et al., 2017). 

In the U. S., hepatitis B is an important health concern for many Asian and African immigrant populations. This is partially due to low or poor vaccination rates in their country of origin (some countries do not have policies on mandatory vaccination, access to adult vaccination or sufficient access to birth dose). While people should be getting screened for hepatitis B during the immigration process, this does not always occur. Immigrant populations also tend to have lower rates of insurance coverage. Many either lack healthcare insurance or do not have adequate insurance.  

Cultural barriers pose a critical challenge to getting people screened and vaccinated as health education materials on hepatitis B are not always available in other languages, such as Khmer or Mandarin. This makes them more likely to avoid getting care or using preventative services such as hepatitis B screening and vaccination due to fears of high out-of- pocket costs, disruptions in their immigration process and cultural factors. Cultural barriers pose a critical challenge to getting people screened and vaccinated as health education materials on hepatitis B are not always available in their native languages. 

The Hepatitis B Foundation and the Hep B United Coalition work with local, national, and global partners to address barriers around hepatitis B and liver cancer for impacted communities. Local coalitions such as Hep B United Philadelphia work with community-based organizations like African Family Health Organization (AFAHO), Philadelphia Chinatown Development Corporation (PCDC), and SHAMS Health Clinic to increase uptake of screening and provide education on hepatitis B and liver cancer among Asian and African immigrant communities.  

 

References: 

Greene, K. M., Duffus, W. A., Xing, J., & King, H. (2017). Social Determinants of Health Associated with HBV Testing and Access to Care among Foreign-born Persons Residing in the United States: 2009 – 2012. Journal of health disparities research and practice, 10(2), 1–20. 

Sunbul M. (2014). Hepatitis B virus genotypes: global distribution and clinical importance. World journal of gastroenterology, 20(18), 5427–5434. https://doi.org/10.3748/wjg.v20.i18.5427 

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Living with Hepatitis B, United States

Nurses need to help wipe out chronic hepatitis B, a disease borne by 300 million people

 

 

 

 

 

 

 

 

Nurses such as you and me – yes, that means all nurses (and our welcomed health care counterparts) – likely come across a patient or parent who declines vaccinations for themselves or their children. And it is not uncommon for nurses to be first in line to receive the unfavorable statements refusing these life-sustaining vaccines. 

While every nurse may provide vaccine education at some point in a patient’s life, those in neonatal and maternal-newborn nursing have a greater responsibility with the hepatitis B vaccine. It is for good reason the hep B vaccine is the first immunization given to newborns within 24 hours of birth, followed by a second dose at 1 months, and the third at 6 months. However, communicating those reasons to parents of our newborn patients takes a compassionate, strong and skillful approach. Especially when we are faced with resistance and the unyielding declinations for the hepatitis B vaccine.  

There are various clinical settings and times when nurses can educate new parents and those with children about how the hepatitis B vaccine works and why it is necessary. We have numerous opportunities to identify misconceptions, fears and inaccurate information a parent might have regarding the vaccine. When addressing the highly recommended CDC’s vaccine schedule with parents, the rule of thumb is letting them know to expect their child will get the hep B vaccine series starting at birth. It is typically at this time when pushback from the parents begins to emerge. First and foremost, determining the “why” in what is making the parent hesitant about or declining the hep B vaccine is vital when trying to help them understand the reason vaccination is strongly advised. 

Resistance to hep B vaccination typically relates to not understanding the risks of contracting the virus, a perceived low risk of exposure or safety of the vaccine. Educating parents about complications that acquiring hepatitis B can have on the body can emphasize the vaccine’s purpose. Nurses need to use language that is concise and easy to understand. Nurses can let parents know hepatitis B is a virus that causes inflammation of the liver that damages and compromises its function, which can and often does lead to liver disease and ultimately cancer. Unlike a common bacterial infection that can quickly be treated with antibiotics, acquiring a hepatitis B infection can mean living with a chronic, life-long and potentially life-threatening illness. And the vaccine was established to provide a solution to that problem.  

Parents who perceive a low risk of their child becoming exposed typically minimize the need for the vaccine. A major misconception is that individuals who have hepatitis B have engaged in risky sexual behaviors or are drug users. To counter this impression, we want to make it very clear that hepatitis B can affect anyone. In fact, 40% of people in the U.S. who have a new hepatitis B infection don’t have any known risk factors. It could be helpful to educate parents using real-life scenarios about how the risks are present outside of stigmatized behaviors. For example, educate them that hepatitis B can be spread if their child shares a razor, toothbrush or nail clipper with someone who has the virus. 

If a parent is on the fence about the hep B vaccine, they might come with assumptions rather than questions. They may state, “My baby is too young, he doesn’t have an immune system yet.” You can let them know: “The hep B vaccine is synthetically prepared with small bits of viral protein and does not contain any blood products. This means the vaccine contains no actual virus and cannot infect anyone.” Educating parents about what the vaccine is will help explain how it actually works. You could say: “By introducing a small part of the virus, the body will learn to recognize the virus in case of future exposures and will protect someone for a lifetime.” 

Parents will often raise safety concerns about the vaccine and the erroneous allegations that it can cause autism. This misconception is tied to a preservative (thimerosal) once used in vaccines and this misinformation still lingers on social media. The most effective way to communicate with parents who harbor this misguided belief is by emphasizing the information from trusted and reliable national public health agencies. Nurses could inform parents that thimerosal is no longer used in the hepatitis B vaccine (or any other childhood vaccine except flu), and a page on the Children’s Hospital of Philadelphia website (June 1, 2021, https://www.chop.edu/centers-programs/vaccine-education-center/vaccine-ingredients/thimerosal) explains why thimerosal in vaccines isn’t harmful. Also, the single study suggesting that link has been discredited and withdrawn from publication, and the physician-author has been banned from practicing medicine (The New York Times, May 24, 2010, https://www.nytimes.com/2010/05/25/health/policy/25autism.html). 

As for the hepatitis B vaccine, as you can read on the Hepatitis B Foundation’s website, “The most highly respected public health agencies and professional medical associations have rigorously studied the safety of the hepatitis B vaccine” (https://www.hepb.org/prevention-and-diagnosis/vaccination/vaccine-safety/). 

Hep B is known as a silent killer, and it is a vaccine-preventable disease at that. For nurses, addressing parents’ hesitancy and navigating a “no” for the hep B vaccine is priority when striving for maximum compliance. Nurses equipped with knowing how to voice the facts and recommendations in a way that doesn’t make parents feel argued with support a greater chance at swaying the decision to vaccinate their children. Using examples that parents can connect to helps achieve a level of understanding that can’t be reached with heavy scientific and textbook language. At the end of the day, if you’ve exhausted all resources and information and a parent still declines the hep B vaccine, simply document and hope for reconsideration down the road. 

This blog post is written by Lacey Hempeler, RN. 

Note: The Hepatitis B Foundation’s consult team can be reached via info@hepb.org. 

  

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Prevention, Liver, Liver Health

Team Helpatitis: Students and Teachers Come Together to Raise Awareness of Hepatitis B in India! 

 

Hepatitis B is a critical public health crisis in India.  With over 40 million HBV carriers, it is estimated that over 115,000 people die each year from hepatitis B related causes and one million newborn babies are at risk of developing hepatitis B in India. 1 

In an effort to raise awareness for hepatitis B and contribute to the World Health Organization’s (WHO) viral hepatitis elimination plan, teachers and students at Amity International School in New Delhi, India launched Team Helpatitis to promote hepatitis B education.. Science teachers have integrated hepatitis B education in their extra-curricular activities to teach students about chronic hepatitis and liver health. School events and festivals have provided unique opportunities for students, teachers, and parents to come together and learn about the importance of prevention strategies like hepatitis B screenings in making India hepatitis free!  

Diwali Lamps Bring Hope and Awareness to the hepatitis B Cause in India 

During the month of Diwali, a religious festival of lights, Team Helpatitis students designed liver shaped oil lamps to promote awareness. These lamps are made from clay pots and are lit every year on Diwali to represent the transition from darkness into light in the coming new year. Students and teachers hope to combat the stigma and misconceptions associated with hepatitis B though these lamps. The lamps were distributed to school students and teachers to bring home and share the important message of hope and resilience with their friends and families. 

 

 

 

 

 

The liver shaped lamps were sculpted, packaged, and distributed by the students and teachers to raise awareness of hepatitis B during the Diwali festivities at their school.

Pin-O-Liv: Dart Throwing Competition to Understand the Difference between Good and Bad Liver Habits! 

The Winter Carnival at Amity International provided a platform for students to showcase their learning outside of the classroom and educate attendees about healthy and unhealthy habits for their liver. The students chose an interactive sport to keep the players informed and entertained. They created a dartboard with pictures representing good and bad lifestyle habits and their impact on the liver. Before the game, players were briefed on liver health and ways to keep the liver healthy and safe. Players were given five darts and challenged to hit the images with unhealthy habits.

 

 

 

 

 

 

 

 

 

Students participate in the dart-throwing competition to “kill” the bad habits that destroy our liver

Livbola: Students reinvent tambola to promote hepatitis B education among children and adults 

Tambola is a slightly different version of Bingo and is a beloved pastime of south Asian communities. The students were given a short presentation on hepatitis B and liver cancer. They were then introduced to the rules of the game and were quizzed on questions related to hepatitis and liver health. Prizes were distributed to players to encourage participation. The players included students, school staff, and community members.

 

 

 

 

 

 

School staff, students, and parents play the Livbola game during their annual winter carnival

The Hepatitis B Foundation was recently approached by the teachers at Team Helpatitis for a live session on hepatitis B. The Foundation met with the students and teachers via zoom a few weeks ago and discussed the physical, social, and financial impact of hepatitis B.  We also discussed the importance of preventative strategies like vaccines in promoting positive health outcomes for all communities.  

 

 

 

 

 

The students and teachers of Amity International School met with the Foundation for an introductory session on hepatitis B on zoom.

 

By participating in these activities, projects, and festivities with the help of their school’s leadership and administration, Team Helpatitis has expanded their reach beyond the classroom and amplified the voices of public health workers, advocates, and people living with hepatitis B! Check out Team Helpatitis’ social media channels to stay updated! 

Team Helpatitis’ Instagram:  https://www.instagram.com/helpatitis_aisv1_yppteam/ 

 

References: 

chrome extension://efaidnbmnnnibpcajpcglclefindmkaj/https://www.who.int/docs/default-source/searo/india/health-topic-pdf/factsheet-b-hepatitisday2016.pdf?sfvrsn=da61ef0_2#:~:text=In%20India%2C%20the%20prevalence%20of,D%2C%20followed%20by%20Aand%20C. 

Premkumar, M., & Kumar Chawla, Y. (2021). Chronic Hepatitis B: Challenges and Successes in India. Clinical liver disease, 18(3), 111–116. https://doi.org/10.1002/cld.1125 

 

300 Million Reasons, advocacy, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, News

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!

Baruch S. Blumberg Institute