Hep B Blog

Category Archives: Living with Hepatitis B

#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

 

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 

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. 

  

You Cannot Live Without Your Liver: Celebrating World Liver Day

What is your body’s largest internal organ that filters and extracts toxins from your blood and can even regenerate on its own?  

The liver! 

Although the liver may not be discussed as frequently as the brain or heart, the liver is an incredibly critical part of everyday life and plays a role in metabolism, digestion, immunity, and overall keeping the body healthy. On April 19th we celebrate World Liver Day and honor everything it does for our bodies. Just some of the liver’s major roles include the production of bile (which helps break down fats during digestion), detoxification of the blood supply, and storage of essential vitamins (Kalra et al., 2023). The complex involvement of the liver in all these functions means that any injury or damage can cause a cascade of negative consequences. That being said, there are many useful preventative and curative measures that people can utilize to heal the liver. In this post, we gained insight from liver experts, clinicians, and people with lived experience to highlight the good, the bad, and the healthy for all things liver! 

Liver Disease 

So, what exactly causes someone to get a liver disease?  

It all boils down to tissue damage which can be caused by viral infections, excessive alcohol consumption and fat intake, autoimmune disease, and more. 

Viral infections 

Of course, one of the most common diseases that affects the liver is hepatitis in all its forms. Hepatitis translates to inflammation of the liver, which can be caused by viral infections, excessive alcohol consumption, or autoimmune diseases. Regarding viral infections there are five different hepatitis viruses (A, B, C, D, and E) that can damage the liver. Dr. Su Wang, Senior Advisor for Global Health for the Hepatitis B Foundation and health care provider, explains the mechanism for viral liver damage. 

“The virus resides and replicates in the liver and over time can cause chronic inflammation which can lead to fibrosis [mild scarring] and even progress to cirrhosis [severe scarring] and liver cancer.” 

Dr. Robert Gish, hepatologist and Medical Director for the Hepatitis B Foundation, highlights how the different viruses affect the liver. 

“Hepatitis A only causes acute infections, meaning the body can recover eventually, whereas hepatitis B, C, D, and E can cause chronic infections that are more likely to lead to long-term damage if not managed.” 

The immune response from liver cells while trying to protect against hepatitis virus can lead to long term inflammation and damage of cells. This causes fibrous connective tissue to develop within the organ as a response to injury and is often one of the first steps towards liver disease.  

Alcohol and Diet 

Excessive fibrosis development and scarring of the liver can lead to a disease called cirrhosis which can also come from excessive alcohol consumption. Since your liver filters toxins out of the blood, the process of filtering alcohol out of the blood causes injury and cell death. Read more about alcohol’s effect on the liver in this blog post 

Another common method of liver damage is through dietary fat deposits that accumulate in the liver referred to as steatosis. This can lead to diseases known as metabolic-associated steatotic liver disease (MASLD), alcoholic steatotic liver disease (MetALD), and metabolic-associated steatohepatitis (MASH). Wayne Eskridge, CEO of the Fatty Liver Foundation explains more about these common liver diseases and how to recognize their presence. 

“Metabolic-associated steatotic liver disease (MASLD) is the new term for nonalcoholic fatty liver disease (NAFLD). It is characterized by excess fat in the liver not caused by excessive alcohol consumption. 

Alcoholic-associated steatotic liver disease (MetALD) is the new term for what was previously known as alcoholic fatty liver disease (AFLD). It is caused by heavy alcohol use. 

The stages of MASLD are as follows: 

  1. Simple steatosis – Fat accumulation in the liver, but no inflammation or damage to liver cells. 
  2. Metabolic associated steatohepatitis (MASH) – Inflammation and damage to liver cells, along with fat accumulation. MASH can lead to cirrhosis and liver failure. 
  3. Cirrhosis – Scarring of the liver due to chronic inflammation and damage. Cirrhosis can lead to liver failure and other complications, such as portal hypertension (high blood pressure in the portal vein) and ascites (fluid buildup in the abdomen).” 

MASLD and MetALD are becoming more common in the general population, particularly MASLD, likely becasue of the increasing prevalence of obesity, diabetes due to a sedentary lifestyle, and eating diets that are high in processed foods, sugary drinks, and unhealthy fats that can promote liver fat accumulation. 

Less Common Conditions 

In addition to the more common liver diseases, there are some lesser-known conditions that are genetic and autoimmune. Wayne discusses four that he identifies as important for people to know. 

Primary Biliary Cholangitis (PBC) – A chronic autoimmune disease that affects the bile ducts in the liver, leading to inflammation and damage 

Autoimmune hepatitis – This is a chronic inflammatory condition where the immune system attacks the liver, leading to liver inflammation and damage 

Hemochromatosis – This is a genetic disorder where the body absorbs too much iron, leading to iron overload in the liver and other organs (Read blog post about hemochromatosis here) 

Wilson’s Disease – A rare inherited disorder that causes copper to accumulate in the liver, brain, and other vital organs 

All liver diseases mentioned in this section can cause excessive stress and changes to the liver tissue, which can lead to liver cancer development. It is important to note though, that fibrosis is reversible and there are things you can do to maintain your liver health to avoid advanced disease. 

Healing the Liver 

The liver can be negatively affected in many ways, but the good news is that the liver is an incredibly resilient organ and there are many ways to heal the liver.  

Treatment 

Clinicians and patients agree, the most important step to healing the liver from a viral infection is treatment. Dr. Gish states that for hepatitis C, “cure with direct-acting antivirals is the first step” and hepatitis C lived experience expert, Courtney Downs, agrees:  

“To heal your liver while living with hepatitis C, prompt treatment is key. Early treatment enhances a person’s overall health and leads to numerous benefits such as: improved quality of life, decreased chances of exposing others, regression of liver fibrosis and a reduction in the risk of liver failure and liver cancer – hepatocellular carcinoma (HCC)” 

Although there is not a cure for hepatitis B like there is for hepatitis C, there are many available and accessible treatments for hepatitis B that can stop viral replication and liver damage. Learn more about available hepatitis B treatment options here. 

Dr. Wang highlights additional management considerations including asking for lab tests to measure “viral load and liver enzymes at least once a year if not more often” and recommends having discussions with your healthcare provider. “You want to ask about liver cancer screening as well and have an Alpha Fetoprotein (AFP) test and ultrasound ordered”. These steps will help to monitor the liver status and prevent progression of liver damage to irreversible stages of cirrhosis and cancer. 

In terms of fatty liver diseases, there may be medications that can be prescribed to reduce liver fat or improve liver function and in severe cases, a liver transplant may be necessary. 

Lifestyle 

There are a few lifestyle changes that all people can make to reduce the negative effects of liver disease and overall improve liver health regardless of disease status, recommended by Mr. Eskridge and Dr. Gish: 

  1. Limiting Alcohol Consumption – Alcohol use at any level can put greater stress on the liver. Rethink the drink! 
  2. Dietary Changes – Focus on fruits, vegetables, whole grains, unsaturated fats, and lean protein. Limit processed foods, sugary drinks, and saturated or trans fats. 
  3. Increasing Exercise – Aim for at least 150 minutes of moderate-intensity exercise per week. 

Courtney provides her insight as someone with experience living with a liver disease. 

“The liver has the unique capacity to regenerate once no more virus is detected and if no new damage occurs. Optimal nutrition and alcohol avoidance are vital. If abstinence isn’t feasible, reducing alcohol and consuming lean protein can aid liver repair. Also, getting vaccinated against hepatitis A and B is very important to protect your liver.” 

There are safe and effective vaccines to prevent hepatitis A and B infections. This is an easy step to protect your liver from future damage and prevent simultaneous liver disease while the liver is in a weakened state. Learn more about the hepatitis B vaccine here. 

Field experts interviewed for this post highlighted their favorite fact about the liver and why World Liver Day is important to them: 

 

 

 

 

Dr. Robert Gish 

“You cannot live without your liver.” 

“Raising awareness will change human behavior and lead to better liver health.” 

 

 

 

 

Dr. Su Wang 

“The liver can regenerate, and fibrosis can be reversible. It is such an important organ and makes almost all the important proteins in our body but also detoxifies.” 

“The liver is an organ that doesn’t get enough attention given its importance and because of that, liver diseases are often neglected. Thus, this day is even more important to increase awareness and promote liver health.” 

 

 

 

 

Wayne Eskridge 

“Education is the only real answer to stemming the tide of this disease (MASLD/MetALD/MASH). Drug therapy is not sustainable on a population basis so people must learn to develop better habits.” 

Hepatitis C lived experience expert, Courtney, expressed advice for anyone living with hepatitis C or other liver diseases: 

 

 

 

 

Courtney Downs 

“You are not alone. There is a whole community of individuals that have cured or cleared their hepatitis C. There are clinicians, support staff, advocates, coalitions, and organizations that consist of some of the most amazing people I have ever met personally and/or professionally. They work tirelessly advocating to remove barriers and challenge the stigma that surrounds viral hepatitis. They don’t judge and they truly embrace radical love and acceptance. There is a cure and there are people who will help you get that cure no matter what your circumstances are. So, my advice would be to get tested, get treated, and get vaccinated.” 

Courtney said it best. Celebrate World Liver Day on April 19th and every day.

Get tested/treated/vaccinated today! 

 

References:  

Kalra A, Yetiskul E, Wehrle CJ, et al. Physiology, Liver. [Updated 2023 May 1]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK535438/ 

Podcast Recap: Barriers to Liver Cancer Surveillance

 

 

 

 

 

 

 

 

 

 

 

 

 

In a recent episode on the B Heppy podcast, Dr. Neehar Parikh, a hepatologist at the University of Michigan, discussed the link between hepatitis B and liver cancer, barriers to screening for liver cancer, and screening methods for liver cancer.  

Hepatitis B and Liver Cancer 

Most people are not unaware of the link between hepatitis B and liver cancer. Hepatitis B can cause liver cancer, especially when left untreated or unmonitored. The hepatitis B virus (HBV) can cause serious damage to liver tissue and result in the growth of tumors that may become dangerous over time. This is why doctors recommend patients living with hepatitis B to continue to monitor their liver health and take treatment if necessary to prevent the progression to liver cancer. The best way to check for cancer is by screening. It is recommended to get liver cancer screening (usually through an ultrasound that looks at damaged tissue or abnormal cell growth) once every six months.  

Barriers to Liver Cancer Screening 

There are several barriers to liver cancer screening at the provider and patient levels. For providers, many times liver cancer screening is not prioritized when compared to other types of cancer screening programs. This is partially due to the limited evidence on liver cancer screening benefits (even though data exists to show that liver cancer screening is valuable, it’s not as strong as the evidence used to back up other cancer screening initiatives like colonoscopy or breast cancer screening). This makes liver cancer a less valuable option for providers to recommend to their patients. Providers are also not always following recommendations or guidelines from liver societies on hepatitis B management and liver cancer surveillance. Liver cancer screening is also not included in the United States Preventative Services Taskforce (USPSTF), which is a tool used by most providers in the U.S. to recommend preventative services to their patients.  

From the patient’s perspective, liver cancer screening is not always discussed by providers. For people living with chronic hepatitis B, many are not aware of the link between the virus and liver cancer. They are less likely to ask more questions about monitoring their liver health if the option or recommendation for screening is never brought up in a conversation with their providers. For many people who need liver cancer screening, they have limited access to care (loss to follow-up, lack of health insurance coverage, etc.). Limitations with the electronic health records (EHR) system is a challenge for patients who may find it difficult to schedule appointments (sometimes patients are not sent reminders to get ultrasounds). 

For people living with hepatitis B, liver cancer is a serious health risk. It is crucial to make sure patients are aware of the link between hepatitis B and liver cancer, the role of screening in early diagnosis and prevention of advanced tumors, and the importance of monitoring liver health as recommended by liver societies and guidelines on liver cancer surveillance.  

Listen to Dr. Parikh’s full episode on B Heppy here: https://bheppy.buzzsprout.com/1729790/14248470-barriers-to-liver-cancer-surveillance-with-dr-neehar-parikh. 

Additionally, the Hepatitis B Foundation recently launched a Learn the Link campaign to help spread information on the link between hepatitis B and liver cancer. View all about the campaign and get access to free resources here.: https://www.hepb.org/research-and-programs/liver/hbv-liver-cancer-connection/ 

Read about the Hep B Foundation’s Newly Launched Learn the Link Campaign with Dung Hua of the Vital Access Care Foundation

This month, we spoke with Dung Hua of the Vital Access Care Foundation, formerly known as the Vietnamese American Cancer Foundation. Dung and her team continuously work to address the needs of the Vietnamese community in Orange County, California and the surrounding areas. Dung spoke to us about her experiences addressing hepatitis B and liver cancer in this community, as well as her contribution to the Learn the Link campaign, which officially launches in February 2024. Dung shared the challenges she faces, her rewarding experiences and the many ways she works to connect with and educate her community. 

The Learn the Link campaign was created to raise awareness about the link between chronic hepatitis B infection and liver cancer in a culturally appropriate way for communities that are most impacted. It was informed by speaking directly with community members and created with their needs centered and prioritized. The Hepatitis B Foundation held focus groups and assembled an advisory committee to learn about the needs and concerns of the communities for which the educational materials were being created to ensure that the materials were informative and sensitive to the traditions and norms of different cultures.  

Can you introduce yourself and your organization

My name is Dung and I work for the Vital Access Care Foundation. We recently underwent a name change because we expanded our services to not only focus on cancer, though The Cancer Continuum of Care, and our liver cancer and hepatitis B programs are the primary focus. We started in 1998 and provided general cancer assistance services, which later developed into a breast cancer focus. In 2003, we started the liver and hepatitis B programs. One of our founders is an oncologist and the other is a gastroenterologist who provides consultation and guidance for our hepatitis B and liver cancer programs. 

Can you tell me about your organization’s programs that address hepatitis B and liver cancer directly? 

Our hepatitis B and liver cancer programs focus on the Vietnamese community. We provide outreach, education, patient navigation and screening. We start with education because many people in this population are not aware of hepatitis B. We host community screenings and bring screenings into the community at churches and cultural events. People are more willing to get screened when we bring screenings to these events. If someone tests positive for hepatitis B, we provide patient navigation and linkage to care. If someone needs to be vaccinated, we provide guidance to link people to the vaccine. If a case is more complicated, we consult with a board member who can provide a professional consultation at no cost. During the pandemic, we tried to tie hepatitis B to COVID-19 and encourage people to get the COVID-19 vaccine and a hepatitis B screen at the same time. We leveraged our hepatitis B vaccine experience and surprisingly, a lot of people were willing to “get poked” twice in one day. 

Can you tell me about the community that your organization serves? 

We focus on the Vietnamese American community in Orange County. This community consists of  immigrants and refugees. In this community, there is still a lot of stigma around hepatitis B. Many people still believe that you can get hepatitis B from sharing a meal with people who are positive. In the Vietnamese community, there’s a saying: “If you sweep the floor, then you find garbage,” which is an idiom for avoiding the doctor; if you don’t go to the doctor, then you won’t know you’re sick. Culturally, you only share what is good. There’s a stigma with seeking help. You’re not supposed to share that you’re weak or struggle, which can lead people to internalize their pain. 

In addition to stigma, many people deal with undiagnosed mental health issues and the challenges of moving to a new country. This community also has lower rates of insurance coverage, which can make receiving routine medical care difficult. The Asian community also deals with the model minority misconception, which can be harmful because many people stereotype Asian people as well educated with a stable income, which isn’t always true.  

Many of the people we serve either speak limited English or no English at all. When people come to the United States (US), they need to immediately find a job and are often classified as low skilled workers. It’s hard for recent immigrants and refugees to have upward mobility. However, many people are motivated by creating better opportunities for their family and children.  

What are some challenges you face in addressing your community’s health concerns? 

The biggest challenges are stigma around disease and having culturally and linguistically appropriate materials. Languages are complicated. Different waves of immigration affect the way that you can communicate with people because languages change over time, which means finding a balance between older and newer languages and dialects is important. It continues to be a learning process for me, as I am exposed more and more to people in my community. It’s important and difficult to be responsive to stigma and all language and cultural barriers, but it is also the most rewarding part of the work.  

Why do you think that hepatitis B and liver cancer educational materials are so important for your community? 

They’re important because knowledge is power. The key to improving is understanding and knowledge, which comes from education. People won’t know what’s best for them if they don’t know the information, which needs to be reinforced through repetition. If people do things and they don’t understand why they are doing them, the behavior won’t last. But if they do understand, they can continue those behaviors and help to spread that information to others. 

What was your experience facilitating the focus groups and serving on the advisory committee that informed the Learn the Link campaign? 

I was there to support and provide observation of the focus group. What I remember is that the community members were very engaged. They have personal experience with hepatitis, which empowered them to engage more. It was a safe space for them to provide feedback. It was empowering for them to be a part of the process and to realize that they are being listened to. The effort of this project to create culturally appropriate materials and seek out feedback from this community allowed people to feel like they made a meaningful contribution to something important. 

While serving on the advisory committee, I remember a number of us were brought together from many different communities and we provided our thoughts and feedback on the project. I enjoyed the opportunity to hear the needs, concerns, and feedback from communities that we don’t typically work with. I found out that many things are similar among diverse communities and it was helpful for me to have the opportunity to learn more about other communities. Seeing everyone at the table providing their perspectives and hearing about the commonalities and the uniqueness was a very interesting experience. 

Why is it important that organizations speak directly with community members when creating campaigns like “Learn the Link”? 

It’s important for any campaign or activity to focus on the community. To be responsive to the community, we must listen to them. We don’t want to create something that we think is the best but doesn’t work for the people that it’s supposed to work for. That direct connection and relationship that allows community members to feel comfortable sharing direct feedback is the key to successful outreach and education.  

What is the most effective way for organizations to engage with your community? 

The most effective way to engage with the community is meeting them where they are. Being willing to go out of the way and find community members, and being open to understanding their needs and concerns is important. We can’t just work 9-5, we have to go out and find them in the community outside of regular working hours. We try to meet community members at flexible hours, host community meetings on the weekends, meet them at the temple or meet them at the park. We try to listen, understand and build rapport.  

Understanding the cultural and generation differences is important as well. For the Vietnamese population specifically, word-of-mouth is powerful. Information spreads in the community through word-of-mouth and can spread like wildfire.  

Connecting with community leaders and other people and organizations who work with the community directly is another way to connect with people. This stems from the immigrant and refugee background; people who lived through the war have a hard time trusting public entities but have trust in the people that they’ve built a rapport with. 

Do you have any final thoughts or comments about the “Learn the Link” campaign and its potential to improve the health practices of the people in your community? Are there any further materials you hope to see in the future? 

I checked out the materials when they were launched and pulled materials to show to a new employee, and I noticed that all materials were in English. When all the translations are available, it will be great to share with not only the community, but with people who work with the community as well. Hepatitis B may not be people’s priority, but with promotion, these materials can remind people that this silent killer is still around and there are resources available.  

What was your experience in helping to review and edit one of the final peer-reviewed manuscripts that will be submitted for publication from this project? 

There were a lot of words to read! Attending the advisory meetings, attending the focus groups, and reading the manuscript was spread out over a long period of time. But it was great to read the summary of all of the work that has been done. It was a nice refresher and I enjoyed reading quotes that resonated with me personally. Other communities have a lot of things in common with the Vietnamese community. It’s very exciting to collaborate together, since we are all doing this work.  

Podcast Recaps: A Global Perspective on Stigma and Discrimination Against Hepatitis B

B Heppy Recap: A Global Perspective on Stigma and Discrimination Against Hepatitis B 

Catherine Freeland is the Associate Director of Public Health Research at the Hepatitis B Foundation. As a researcher and founder of the Foundation’s Hepatitis B Discrimination Working group, Dr. Freeland shares more about the impact of discrimination and stigma as it pertains to people living with hepatitis B.  

What is the difference between stigma and discrimination? 

  • It’s important to understand stigma and discrimination are different. Stigma is a social process that is characterized by being excluded, rejected, and devalued because of the social judgement associated with a certain condition. Although the literature on the topic is limited, it has been shown that stigma related to hepatitis B has negatively impacted the quality of life for those living with hepatitis B around the globe. Discrimination is different in that it is characterized by the laws and behaviors that limit opportunities for growth. For example, denying access to education or work because someone is living with hepatitis B is a form of discrimination. Discrimination is often a result of stigma.  

What are the causes for stigma and discrimination as it pertains to hepatitis B? 

  • Lack of knowledge and understanding about hepatitis B in the community is a root cause of stigma and discrimination. Most people are unaware of what hepatitis B is and how it can be transmitted. This often results in rumors, myths and misconceptions spreading in the community and unfortunately can alienate people living with hepatitis B.  

How does stigma and discrimination against hepatitis B affect the lived experiences of people in the community? 

  • When myths and misconceptions spread about hepatitis B in the community, people with lived experience often face discrimination. A lot of people are required to undergo health screenings prior to starting employment.  If they test positive for hepatitis B, they can be denied employment and/or can be fired from their jobs in many parts of the world. It can then be difficult to find another job and support their families. For people who wish to get employment visas to work abroad, they are required to undergo health screenings. In the Philippines and the Gulf Coast (Bahrain, Kuwait, Oman, Qatar, Saudi Arabia and the United Arab Emirates countries), it is common practice to deny employment visas to people living with hepatitis B. In some countries and cultures, pre-marital screening. We have also heard cases of individuals living with hepatitis B experience more challenges in custody of their children in divorce or separation cases.  

How can we address these challenges and what is the Foundation doing to support people experiencing discrimination? 

  • It is important for people with lived experience to speak up and share their experiences of stigma and discrimination. At the Hepatitis B Foundation, we have a discrimination registry where people can fill out survey responses pertaining to any discrimination, they are facing in their home countries. The survey is free and open access. We also have a working group of experts consisting of people with lived experience and community leaders and partners. By raising awareness about discrimination, we are working towards changes in policy across the globe to reduce stigma, improve lives, and give people living with hepatitis B a voice that matters. Ultimately everyone has a role to play in addressing discrimination and it starts with education and sharing accurate information on hepatitis B and advocating against this discrimination and stigma.  

 

Listen to the full episode here! 

Hep Matters Vignettes: Waiting for a Cure.

 

 

 

 

 

 

 

 

Hep Matters: Brief vignettes focused on promoting awareness of hepatitis B and liver cancer through fictional narratives inspired by real events and experiences

 

 

The Scenario 

 

 

 

 

Amina was born and raised in Kandahar, Afghanistan. At the age of 17, she moved to the United States with her family. During a routine check-up with her primary care doctor, Amina discovered that she had hepatitis B. She had never heard of the disease and explained that she always takes care of herself. The doctor told her that hepatitis B is a virus that damages the liver, and anyone can get it unless they are vaccinated to protect against it. Amina recalled that she never received any vaccinations for hepatitis B. Her family members were also unaware of how hepatitis B gets transmitted. 

 

 

Amina asked her doctor how she could get rid of this virus. Her doctor explained to her that there is no cure for hepatitis B, but antiviral treatment options do exist. While she may not be able to completely get rid of the virus, she can help protect herself from serious conditions such as hep B related cirrhosis or liver cancer with treatment. Amina’s doctor encouraged her to get treatment to prevent any serious problems from occurring. He also mentioned that treatment for hepatitis B is safe and effective. This did not make any sense to Amina. She thought to herself that if a treatment wouldn’t cure her of the disease, then there is no point in taking it. She felt healthy and did not show any symptoms. After the doctor suggested treatment options, she said that she will wait for the cure.

 

 

After moving to the U.S., Amina had gotten busy with school and work and did not follow up with her primary care doctor for years. Amina experienced stomach pains from time to time but they often went away on their own. On one occasion, her stomach pain worsened. She had to take a few days off from work to get better using home remedies, but they didn’t help. Finally, she went to the doctor’s office to learn more. She discovered that she had liver cancer. Her doctor referred her to a hepatologist (a liver specialist) for further treatment.  

 

 

 

The hepatologist explained to Amina that hepatitis B can lead to liver cancer without monitoring and treatment. Even though a cure is not available, treatment options do exist, and they help in slowing and preventing serious liver disease, liver damage or liver cancer. If Amina had started antiviral treatment on time, she could have saved her liver. The doctor recommended chemotherapy for Amina to treat the cancer. Not only did her medical bills go up but Amina felt physically and mentally exhausted by the procedures. She advocates for everyone living with hepatitis B to get treatment if they need it and not wait for the cure. She also participates in advocacy efforts to make treatment options more affordable for people living with hepatitis B. 

 

 

The Challenge: 

Lack of awareness: 

Amina and her family had little knowledge about hepatitis B before her diagnosis.  They were not vaccinated, which put them at an increased risk of getting hepatitis B. Even after her diagnosis, Amina did not take the time to fully understand her diagnosis, what lifestyle she needs to follow, or available treatment options. Not knowing enough about one’s hepatitis B diagnosis can put people at risk for more serious problems in the future such as liver cancer.  

Barriers to treatment 

After her doctor went over the treatment options, Amina decided to wait for a cure. While it is not clear if financial reasons played a role in her decision to not get treatment, the cost of treatment is certainly an important factor when considering treatment options for many people. Not having insurance coverage, high out-of-pocket costs, and side effects from medication can be barriers to getting treatment for hepatitis B.  

Difference between the cure and the current treatment for hepatitis B 

Instead of getting treatment, Amina decided to wait until a cure is available for hepatitis B. It is very important to understand the difference between treatment for hepatitis B and a potential cure. While scientists are working on finding an effective cure, it is not yet available. The process of getting a new medication approved for use is very long and consists of many procedures and steps, to ensure safety and effectiveness. The available treatment for hepatitis B is very effective in preventing serious liver problems such as cancer as it can control the long-term effects of the virus on the liver. There are many different treatment options available to reduce the symptoms, help people feel better, and prevent progression of hepatitis B to advanced liver disease such as liver cancer.  

 

What Can You Do? 

Don’t wait! 

After receiving your diagnosis, the most important step is to not wait and to get connected with care immediately. Schedule an appointment with your doctor and discuss your results. Take the time to understand your diagnosis and ask important questions. Discuss treatment options. Sometimes, treatment is not needed but other times, it’s important to start treatment right away. Encourage your friends and family to get screened and vaccinated for hepatitis B.  

Find Resources! 

The Hepatitis B Foundation has excellent resources on all things related to hepatitis B knowledge, prevention, and treatment. Check out some of our resources below:  

Information about hepatitis B:  

  • https://www.hepb.org/resources-and-support/fact-sheets/ 

Community support:  

  • https://www.hepbcommunity.org/  

Medication assistance programs 

  • https://www.hepb.org/treatment-and-management/patient-assistance-programs-in-the-u-s/ 

Resources for those newly diagnosed  

  • https://www.hepb.org/prevention-and-diagnosis/newly-diagnosed/ 

Hepatitis B research institute 

  • https://www.blumberginstitute.org/ 

Understanding the Impact of Drinking Alcohol on Liver Health

 

 

 

 

 

 

 

 

 

 

April is Alcohol Awareness Month!  

Hepatitis B is a virus that can damage the liver. The liver is a critical organ in the human body and is responsible for energizing cells, removing toxins and waste, and strengthening the immune system. It is most commonly understood as the body’s primary filtering system and storage unit. Alcohol consumption has been shown to cause serious problems for the liver as it overwhelms the liver’s ability to carry out important tasks. 

Important Functions of the Liver: 

Bile Production: Bile is a greenish liquid released from the liver and into the gallbladder (a small sac located under the liver which stores bile) that helps to break down fats so they can be used by the body. The liver produces and cleans bile so that it can move through the small intestine. Bile also helps to remove some toxins and waste products such as excess cholesterol (a type of fat necessary for digestion and healthy cells) and bilirubin (a yellow substance made from old red blood cells) to keep your immune system healthy and clean. Even though cholesterol is an important substance, excess amounts of cholesterol can clog the bloodstream and cause serious problems like heart disease. This is why the liver removes unwanted cholesterol from the body. Similarly, bilirubin is made during the production of bile and is a waste product of old and broken-down red blood cells. A healthy liver can filter out and remove bilirubin from the body. High amounts of bilirubin may indicate damage to the liver or serious liver disease. 

Natural Detoxification: The liver is most notably known for its natural detox system, which is one of its most important functions. The liver removes toxins, foreign substances, and harmful waste from the bloodstream such as alcohol, drugs, and other chemicals through different ways. Depending on the substance, it may remove the toxin through bile, break it down into safer substances so the toxins don’t cause harm. The liver can even store the toxins, so the rest of the body is safe. It is important to understand that, even though the liver has a remarkable filtering system, it has limits and should not be put under excess stress.  

Blood Glucose Regulation: Glucose is a sugar molecule and the most important source of energy for your body. Glucose enters the body through foods high in carbohydrates, such as grains, potatoes and fruits. During the digestive process, glucose molecules from foods are broken down and used by the body to energize cells and maintain the most basic yet critical functions of the immune system. Glucose turns into blood glucose or blood sugar when it travels through the bloodstream. For glucose to be used as energy by the cells, it needs assistance from insulin (a hormone released by the pancreas), which helps it move around and get to the cells. Think of insulin as the key and glucose as the lock. The key opens the lock to the door. Similarly, insulin opens the door so that glucose can get inside the cells and provide energy. High levels of blood glucose and the inability to produce or use insulin properly can result in diabetes. Even though glucose comes from food, the human body can use the liver to produce its own glucose. The liver is basically the storage unit for glucose, saving it for use at a later time in the form of glycogen. Glycogen or stored glucose is released on an “as needed basis.” When the body is running low on glucose, the liver uses fats to provide energy and saves the remainder of the glucose for the most important organs that need sugar for energy, such as the brain and kidneys.  

Alcohol Consumption and the Liver: 

Alcohol is a toxic substance and is known to cause a powerful effect on the brain’s ability to understand and process information because the brain is a very sensitive organ. This is why alcohol can be so addictive for some people. It causes chemical effects (excess release of dopamine, a hormone that makes you feel good) in the brain, which can lead to addiction. Increased intake of alcohol is also linked to several health issues such as cancer, heart disease, digestive problems and liver disease. Alcohol use is also associated with injuries such as fatal car crashes and alcohol overdose.  

Since the liver is the body’s natural detox system, alcohol consumption disrupts the liver from carrying out its most important tasks. For example, the liver’s role is to remove alcohol from the blood. Breaking down ethanol (found in alcohol) causes some liver cells to die. The liver is able to make new cells but too much alcohol or long-term use can reduce the ability to make repairs. The U.S. Centers for Disease Control and Prevention (CDC) defines more than two drinks per day for men and one drink per day for women to be excessive alcohol use. Drinking too much inflames the liver and disrupts its filtering system. Damaged and weakened liver cells are unable to remove the toxins from alcohol from the blood. When liver cells are destroyed, they are unable to carry out the other important tasks such as producing bile, making proteins and storing glucose.  

The most common type of alcohol related disease is fatty liver. This is when excess amounts of fat are found in the liver. This causes the liver to swell, and overtime may cause inflammation or cirrhosis (scarring of the liver). Any damage to the liver cells, whether it’s through swelling, inflammation, or scarring, disrupts the liver’s ability to carry out its most essential functions. Cirrhosis or scarring of the liver is the most dangerous thing that can happen to the liver. It means that healthy liver tissue and cells are now being replaced by scar tissue from liver damage. The symptoms of liver damage from alcohol use may consist of fever, vomiting, nausea, jaundice, abdominal pain, fatigue and loss of appetite. This process is not sudden and usually takes a long time to happen. However, symptoms and signs may not always be present.  

What People Living with Hepatitis B Should Know About Drinking Alcohol? 

People living with hepatitis B should know that the liver is already weakened by the virus. The hepatitis B virus attacks the healthy liver cells and tissue and causes inflammation. Alcohol use can result in more problems and can put greater stress on the liver. It can speed up the harm to the liver, resulting in serious liver disease. It can lower the body’s ability to defend itself from foreign invaders, such as other viruses and bacteria. Studies have shown that alcohol intake can result in rapid HBV replication, further increasing the risk of cirrhosis and liver disease.  

Love your Liver! 

In a recently published statement by the World Health Organization, it was found that “no amount of alcohol is safe when it comes to health.” It is important to understand that alcohol, whether little or much, is a toxin and puts the liver at the highest risk as the liver is the natural detox for unwanted and harmful substances. The liver does a lot to keep our bodies protected from harm and acts as a natural defense. But, like people, the liver can also experience burnout. It is very important to keep our liver healthy, safe, and away from harm! 

References: 

https://www.hopkinsmedicine.org/health/conditions-and-diseases/alcoholinduced-liver-disease 

https://www.verywellhealth.com/definition-of-bile-1759867 

https://www.ncbi.nlm.nih.gov/books/NBK470209/ 

https://dtc.ucsf.edu/types-of-diabetes/type1/understanding-type-1-diabetes/how-the-body-processes-sugar/the-liver-blood-sugar/#:~:text=When%20you’re%20not%20eating%20%E2%80%93%20especially%20overnight%20or%20between%20meals,in%20a%20process%20called%20glycogenolysis. 

https://columbiasurgery.org/liver/liver-and-its-functions#:~:text=The%20liver%20filters%20all%20of,fats%20and%20carry%20away%20waste. 

http://hepctrust.org.uk/information/liver/detoxification 

https://www.who.int/europe/news/item/04-01-2023-no-level-of-alcohol-consumption-is-safe-for-our-health#:~:text=The%20risks%20and%20harms%20associated,that%20does%20not%20affect%20health. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7081008/#:~:text=Hepatitis%20B%20virus%20(HBV)%20and,allows%20HBV%20to%20persist%20chronically. 

https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/effects-of-alcohol-on-your-health-and-liver 

The Purpose and Process of Storytelling

 

 

 

 

 

 

 

 

 

If you live in the U.S. and want to learn how to share YOUR hepatitis B story in a powerful and effective way to help raise awareness, educate communities, and inspire action around hepatitis B, consider applying to our next #justB digital storytelling workshop 

The #justB campaign empowers people with lived experience to share their story and use their voice to help increase awareness and advocacy around hepatitis B, combat stigma and discrimination, and encourage more people to get tested, vaccinated, and/or linked to care and treatment. Beginning in 2017, the Hepatitis B Foundation has partnered with StoryCenter to host six #justB digital storytelling workshops for over 41 participants from across 22 states in the U.S. and Canada. The #justB campaign includes stories that have been translated and published in 13 languages in addition to English – Mandarin, Cantonese, Vietnamese, Korean, Arabic, French, Mandingo, Twi, Yoruba, Tagalog, Khmer, Mongolian, and Chuukese.  

Attending a #justB digital storytelling workshop is a unique and uplifting experience that brings together people directly affected by hepatitis B in a supportive, small group environment (no more than 10 participants), where they can feel free to share openly about their experiences while learning to create short videos or “digital stories” in their own words. During the workshops, participants are guided through a “Story Circle” activity, receive feedback on selecting specific parts of their story to develop their script around, record a voiceover, gather photos and video clips, and combine these materials into short videos around 3-4 minutes long. After the workshops, participants become part of a growing community of more than 40 other storytellers who receive ongoing communications, resources, and opportunities to stay connected and engaged in hepatitis B advocacy and education.  

 

 

 

 

 

 

 

The storytellers gather around for a storytelling workshop.

 

Over the years since the initial launch of #justB, we have seen just how powerful storytelling is, and how personal stories can be used to promote greater awareness, openness, and discussion around an often stigmatized disease like hepatitis B. We have also learned that the process of storytelling – and participation in storytelling workshops – has a positive and lasting impact on storytellers themselves.  

For example, the following quotes (collected from storyteller interviews and audience surveys) highlight the impact that the #justB campaign has had on participants and viewers. 

Quotes from storytellers about their experience: 

  • “In the weeks after the workshop, I felt a lot more hopeful and supported.”  
  • “It was an awesome, life-changing experience and I look forward to doing more work with the Hepatitis B Foundation and various other organizations to raise Hepatitis B awareness and prevention.” 
  • “This storytelling workshop was a true blessing for me personally. Before, I felt isolated and disconnected. After the workshop and getting to know how Hep B has affected others, I feel a great sense of family and inclusion. My true hope is that our stories can change how others not affected view those who are and that more emphasis would be placed on the treatment and cure for this condition.” 
  • “I remember feeling very lonely when I first got diagnosed. I was, I don’t know, a leper or something but then to hear other people having gone through that same fear and that same sort of feeling of isolation, just super impactful. It made you recognize that this doesn’t have to be a lonely or solitary thing. There are other people who have the same struggles and experience the same fear, I guess, that you did. That was incredibly powerful, and definitely something that I didn’t know I was missing that.” 
  • “The workshop definitely changed my perspective on the power of storytelling for mental health.”  

Quotes from story viewers / audience members:  

  • “I really enjoyed the personal stories. Hearing first person experiences re: HBV has such a significant impact and realism that is not accessible when approaching the topic from a clinical or third person perspective. It’s very sad but powerful to hear the experiences re: stigma, isolation, perseverance, and how they are fighting for their families, friends, and others.” 
  • “It was very informative. I came in not understanding what it really was. Now I understand how important vaccinations are. It is an important topic to discuss, and I want to let my friends and family know how serious the problem is.” 
  • “The stories were extremely powerful. That paired with data and key messages [was] a very effective presentation.” 
  • “JustB storytelling was very moving! The diversity in storytellers was great.” 
  • “Very touching, impactful and inspirational! Thank you to all the storytellers for your bravery!”  
  • “The storytelling was wonderful. I will definitely be using the stories in our education and awareness outreach.”  

 

 

 

 

 

A postcard featuring quotes from the Dai’s Story.

 

Learn more about our current storytellers at www.hepb.org/justb. To apply for the workshop, fill out this form: https://storycenter.wufoo.com/forms/zyu5qsb02lscca. We accept and review applications on a rolling basis until all spots are filled.  

The next #justB workshop will take place this summer 2023 (tentatively in late July or August) and will be held in either Washington, DC or in the Doylestown/Philadelphia area. All travel, accommodations, and meals will be coordinated and paid for by the Hepatitis B Foundation. Participants will also receive a honorarium for completing the workshop.  

The Hepatitis B Foundation recently launched a new website for our storytelling campaign. Visit https://www.hepbstories.org/ to learn more!

If you have any questions or feedback, please contact Rhea Racho, Program Director – Advocacy and Engagement at rhea.racho@hepb.org.