Hep B Blog

Category Archives: Liver Health

#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.” 

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.  

Highlighting the Relationship between Hepatitis B and Liver Cancer

Highlighting the Relationship between hepatitis B and Liver Cancer

October marks Liver Cancer Awareness Month, an initiative highlighting this significant, but under-prioritized public health concern. Unfortunately, people living with hepatitis B have greater risk of developing liver cancer, and this risk is even higher for people born in countries where hepatitis B is more prevalent (Department of Health and Human Services [HHS], 2014; Chayanupatkul et al., 2017). Because of this, the Hepatitis B Foundation (HBF) conducted a study among foreign-born communities in the U.S. who are heavily impacted by the hepatitis B virus (HBV) to assess awareness levels about the connection between HBV and liver cancer. HBF used the perspectives and ideas expressed during these focus groups to create culturally and linguistically tailored, community-focused awareness and educational materials, so that everyone has continuous access to user-friendly HBV and liver cancer information.

From April to September 2021, the HBF conducted focus groups with people from the Micronesian, Chinese, Hmong, Nigerian, Ghanaian, Vietnamese, Korean, Somali, Ethiopian, Filipino, Haitian, and Francophone West African communities. A total of 15 virtual focus groups took place, with 101 individuals providing their thoughts about what hepatitis B and liver cancer are, and insights into appropriate strategies to educate their greater communities on the connection between these two conditions. The resulting communications campaign aims to improve the public’s knowledge about the link between HBV and liver cancer, reduce hepatitis B- and liver cancer-related myths and misconceptions, and promote hepatitis B and liver cancer screening and early detection among Asian and Pacific Islander (API) and African and Caribbean immigrant communities. The ideas and experiences voiced by focus group participants also contributed to the development of informational liver cancer materials for community health educators to integrate into existing education programs for immigrant communities.

Summary of focus group findings:

All focus groups emphasized the need for educational materials to highlight the relationship between hepatitis B and liver cancer. Interestingly, people were more aware of liver cancer and its serious health consequences than they were of hepatitis B and how it is a leading cause of liver cancer. Many people had personal experience with liver cancer, having known family members, friends or other community members who have died from the disease. With this, participants believed that people will be more likely to practice healthy behaviors, like vaccination and routine screening, when they know that HBV can lead to liver cancer and know what behaviors can reduce their risk of liver cancer and death. When people learn about the benefits of vaccination (like full protection against HBV and reducing the risk of transmitting the virus to loved ones), and screening (keeping your liver healthy), and are provided with resources and tools to manage their health, they are empowered and are more likely to make healthy choices to reduce their risk of severe health outcomes.

When educating people about the connection between the two diseases, it is also important to address the widespread misconceptions about both hepatitis B and liver cancer, which contribute to shame and stigma surrounding each condition. Many focus group participants revealed that their communities believe that HBV is related exclusively to sexual promiscuity, injection drug use and poor hygiene, all of which lead to stigma against people living with hepatitis B (PLHB), who are believed to be “immoral” or “dirty.” These stigmatizing beliefs cause PLHB to become reluctant to seek care and treatment for the virus, and can discourage screening in the greater community because people do not want to be shamed by or isolated from their social circles. Additionally, participants discussed how their communities believe that liver cancer is only associated with alcohol and are unaware of the causal relationship between HBV and liver cancer. According to focus group participants, educational materials should include some information about how hepatitis B is transmitted and how it can lead to liver cancer if left untreated and unmanaged. One way to do this is by including the personal testimonials of PLHB and liver cancer in educational materials, who show the audience how they stay healthy and maintain a good quality of life while living with these diseases. As people see how one’s quality of life does not diminish, and learn from the stories of people living with hepatitis B or liver cancer, they may become more understanding of the diseases and supportive of their own community members who are living with them.

Focus group participants were also asked to identify communication strategies that would be acceptable for their community groups. As for in-person communication, educational sessions should take place in settings where people feel safe, including community-based organizations, religious spaces, and healthcare offices. These sessions, as emphasized by participants, should be facilitated by trusted messengers, like patient navigators, doctors, and faith leaders, or other people who have a shared culture with the audience. Demonstrating cultural respect during face-to-face communication is also of utmost importance. Certain communities emphasized that it is especially important to have gender-specific messengers when discussing topics like sexual transmission of hepatitis B (Taylor et al., 2013; Cudjoe et al., 2021). 

Educational campaigns should also be strategic when discussing community-specific risk, as it is important to discuss each community’s risk without placing blame on a specific group. Despite the fact that countries in the Asian-Pacific and sub-Saharan African regions have endemic levels of HBV and the highest global incidence rates of liver cancer (Zamor et al., 2017), many focus groups explained that their communities consider HBV and liver cancer to be Western diseases, since the conditions are often not discussed in home countries, and are therefore unaware of both the severity of the diseases and their personal risk. Focus group participants agreed that informational material can group highly impacted communities together when presenting prevalence rates and risk factors, so as to reduce shame associated with HBV and liver cancer of one group while increasing audience awareness of their risk (Parvanta & Bass, 2018). 

Experiences of Community Focus Group Facilitators

Community participation and leadership was of utmost importance in this project. Two focus group facilitators recounted their experiences of recruiting and conducting focus groups with their communities. The first was the leader of the Cantonese focus group.

Despite being nervous about how it would turn out, one facilitator spent time thinking about the project. They chose to conduct the focus group in Chinese (Cantonese), the “native language of the participants,” and hoped that communicating in Cantonese would increase participant engagement, especially when discussing their “lived experience of the disease.” 

“Prior to convening the Zoom meeting, I had provided a one-on-one orientation to each participant about the theme of the focus group and expectations. As a result, everyone was ready and able to fully participate, and speak openly at the meeting. It was a fruitful discussion among the five participants. Everyone brought up their perspectives and insights about stigma and health education strategies to the community. They had expressed a sense of fear and emotional distress when they were made aware of the relationship between hepatitis B and liver cancer. They raised lots of questions on hepatitis B transmission, testing and vaccination, and liver cancer and treatment, and were very interested to learn more about necessary lifestyle changes if they contracted chronic hepatitis B. 

At the end participants had requested a follow-up session to learn more about HBV and liver cancer.  They will be excited to know about the release of the newly developed Chinese-language educational materials on both diseases, which came together because of their contributions. I would suggest Hepatitis B Foundation and UC Davis to host an in-person workshop to present  the new education materials.  That would be a meaningful outreach and education to the local Chinese and Asian communities.”

Another facilitator shared their thoughts and insights regarding the focus group they conducted with their African immigrant community. They felt that being a facilitator for this study was an “enlightening experience,” especially as they uncovered their community’s healthcare awareness as it relates to hepatitis B and liver cancer. They continued to share:

“Running the focus group gave me valuable insights into the knowledge gaps and misconceptions surrounding HBV within the African immigrant population. Through open and honest discussions, we uncovered specific areas where education and awareness initiatives can have a significant impact. Many participants needed to understand the transmission, prevention, and available resources related to these diseases. Understanding these nuances is crucial in tailoring our educational materials effectively.

Regarding the study findings, it was evident that there is a pressing need for culturally sensitive educational resources. The unique challenges African immigrants face, including language barriers and cultural differences, highlight the importance of creating materials that resonate with our community members. Moreover, the findings emphasized the urgency of dispelling myths and stigmas associated with HBV and fostering a supportive environment for affected individuals and their families.

As for the materials produced for the campaign, I am genuinely impressed with the effort and attention to detail put into their creation. The content is informative and culturally relevant, making it relatable to our community. Using images, culturally familiar scenarios, and visuals ensures that these materials will significantly raise awareness about HBV in my community.

When disseminated effectively, these materials will empower African immigrants with the knowledge they need to protect themselves and their loved ones. By addressing the specific concerns and questions raised during our focus group sessions, these resources have the potential to bridge the information gap and promote proactive healthcare practices within our community.”

Conclusion

The overall goals of these materials are to facilitate improved hepatitis B and liver cancer awareness, increase testing and prevention behaviors, and reduce misconceptions about the two diseases to ultimately reduce HBV- and liver cancer-related death. Thanks to the insights and recommendations from the focus group participants, educational hepatitis B and liver cancer materials were created in a culturally sensitive and linguistically appropriate manner for a number of communities in the U.S. who are greatly impacted by the two diseases. To reach a broad audience, the materials will be available on multiple communication platforms and in multiple languages. This first part of the community-informed educational campaign can be found on the HBF’s Liver Cancer Connect website now. All materials will be fully uploaded and available to the public for further community education starting in February of 2024. Translated materials and messages tailored for audio and video formats will also be uploaded on a rolling basis. 

References

Chayanupatkul, M., Omino, R., Mittal, S., Kramer, J. R., Richardson, P., Thrift, A. P., El-Serag, H. B., & Kanwal, F. (2017). Hepatocellular carcinoma in the absence of cirrhosis in patients with chronic hepatitis B virus infection. Journal of Hepatology, 66(2), 355-362. https://doi.org/10.1016/j.jhep.2016.09.013

Cudjoe, J., Gallo, J.J., Sharps, P., Budhathoki, C., Roter, D., & Han, H-R. (2021). The role of sources and types of health information in shaping health literacy in cervical cancer screening among African immigrant women: A mixed-methods study. Health Literacy Research and Practice, 5(2), e96-e108. doi: 10.3928/24748307-20210322-01

Department of Health and Human Services. (2014). Action plan for the prevention, care, & treatment of viral hepatitis. Department of Health and Human Services.

Hong, Y.A., Juon, H.S., & Chou, W.Y.S. (2021). Social media apps used by immigrants in the United States: Challenges and opportunities for public health research and practice. mHealth, 7, 52. doi: 10.21037/mhealth-20-133

Hong, Y.A., Yee, S., Bagchi, P., Juon, H.S., Kim, S.C., & Le, D. (2022). Social media-based intervention to promote HBV screening and liver cancer prevention among Korean Americans: Results of a pilot study. Digital Health, 8, 20552076221076257. https://doi.org/10.1177/20552076221076257 

Joo, J.Y. (2014). Effectiveness of culturally tailored diabetes interventions for Asian immigrants to the United States: A systematic review. The Diabetes Educator, 40(5), 605-615. DOI: 10.1177/0145721714534994

Parvanta, C., & Bass, S. (2018). Health communication: Strategies and skills for a new era: strategies and skills for a new era. Jones & Bartlett Learning, LLC.

Porteny, T., Alegria, M., del Cueto, P., Fuentes, L., Lapatin Markle, S., NeMoyer, A., & Perez, G.K. (2020). Barriers and strategies for implementing community-based interventions with minority elders: Positive minds-strong bodies. Implementation Science Communications, 1, 41. doi: 10.1186/s43058-020-00034-4

Taylor, V.M., Bastani, R., Burke, N., Talbot, J., Sos, C., Liu, Q., Jackson, J.C., & Yasui, Y. (2013). Evaluation of a hepatitis B lay health worker intervention for Cambodian Americans. Journal of Community Health, 38(3), 546-553. doi: 10.1007/s10900-012-9649-6

Zamor, P. J., deLemos, A. S., & Russo, M. W. (2017). Viral hepatitis and hepatocellular carcinoma: Etiology and management. Journal of Gastrointestinal Oncology, 8(2), 229–242. https://doi.org/10.21037/jgo.2017.03.14

Drug Profile: Three Hepatitis Delta Therapies That We Hope to See Widely Available Soon

 

 

 

 

The full extent of hepatitis delta’s (HDV) global disease burden is still unknown and treatment options for HDV have been limited. However, there are three promising up-and-coming drugs to treat HDV patients. This blog post details the drugs’ current phase of development and testing, how well they work for patients in the real world, and their current path toward regulation and market availability. 

Bulevirtide (Hepcludex) 

Gilead Sciences Inc. has been seeking approval from the U.S. Food and Drug Administration (FDA) for bulevirtide, or Hepcludex, since 2021. In 2020, Gilead acquired MYR, a German pharmaceutical company that had developed the hepatitis delta virus (HDV) drug. At the time that it was acquired, Hepcludex had already been conditionally authorized for use in Germany, France, and Austria (MYR Pharmaceuticals, 2020). Gilead, which is based in California, in the U.S., hoped to accelerate the global launch of Hepcludex. Since then, however, Hepcludex remains in regulatory limbo. In October 2022, the FDA announced the rejection of Hepcludex, citing concerns around the manufacturing and delivery of the drug. Gilead responded by stating that they plan to resubmit Hepcludex for approval as soon as possible (Dunleavy, 2022). Six months after the FDA rejection, the Committee for Medicinal Products for Human Use, which is the European Medicines Agency’s (EMA’s) committee responsible for conveying its opinions on medicinal products to the public, stated that it recommends Hepcludex for full marketing authorization in Europe. Since its conditional approval, a Phase 3 trial (which utilized data from patients in Germany, Italy, Russia, Sweden, and the U.S.) has shown it to be safe and effective for HDV patients. If the European Commission fully approves Hepcludex, it will be the only authorized HDV treatment available in Europe (Dunleavey, 2023).  

Lonafarnib 

At the end of 2022, Eiger Biopharmaceuticals announced that lonafarnib reached an important milestone in its phase 3 trial.  

The trial includes two regimens in patients with chronic HDV:  

  1. 1. Lonafarnib boosted with ritonavir, a protease inhibitor, which interferes with the ability of certain enzymes to break down proteins, often used in combination with other therapies for antiviral activity (this is an all-oral therapy), and
  2. 2. Lonafarnib in combination peginterferon alfa, an antiviral and immunosuppressive, which either completely or partially suppresses the immune system, often used to treat hepatitis B (HBV) and hepatitis C (HCV) patients (this is a combination therapy).

Both treatment arms showed statistical significance over the placebo arm of the trial. The placebo arm is used as a control in drug testing and has no therapeutic effect on patients. The results showed three noteworthy findings: 1. After 48 weeks (about 11 months) of treatment with the all-oral regimen, a small number of patients may achieve reduced viral load and improved liver function. 2. Combining lonafarnib and ritonavir with peginterferon alfa showed the potential to almost double the effectiveness of the drugs. 3. Combination treatment may lead to significant liver tissue improvement. Researchers found that most adverse symptoms related to treatment were either mild or moderate in severity, with gastrointestinal issues being the most frequent (Eiger Biopharmaceuticals, 2022). 

Peginterferon Lambda 

In June 2023, the results of a phase 2 trial looking at the safety and efficacy of peginterferon lambda (also an Eiger Biopharmaceuticals product) in HDV patients were published. Previously, peginterferon lambda showed a good tolerability profile (or the degree to which patients can tolerate negative treatment symptoms) in patients with HBV and HCV when compared to peginterferon alfa. In this trial, patients received 120-mcg or 180-mcg peginterferon lambda injections over 48 weeks, followed by 24 weeks of post-treatment follow-up. Researchers found that 180-mcg injections were more effective in HDV patients compared to the 120-mcg injections group. Results showed that with 48 weeks of 180 mcg treatment, patients showed a significant reduction in HDV RNA, the molecules responsible for perpetuating the virus in HDV patients. 36% of patients’ HDV RNA levels were undetectable. Some of the adverse symptoms patients experienced were flu-like symptoms and elevated transaminase levels, or enzymes that are related to a fatty liver. Most adverse symptoms were mild or moderate in nature and were resolved without additional treatment (Etzion et al, 2023). 

These three drug therapies show promise for HDV patients. Hepcludex is well on its way to becoming fully authorized in Europe after its three-year conditional approval and recent Phase 3 trial results. Lonafarnib’s phase 3 trial results are encouraging and Eiger, its manufacturer, plans to begin meeting with regulatory agencies, such as FDA and EMA, to discuss regulatory submissions (Eiger Biopharmaceuticals, 2022). Peginterferon lambda has shown a higher tolerability in patients with a lower adverse event rate than peginterferon alfa, which has been modestly used for the treatment of HDV over the past several decades (Etzion et al, 2023). Peginterferon lambda still has a ways to go before regulatory discussions, considering that results have just been published from its Phase 2 trial. Typically, in Phase 2 trials, researchers seek to learn whether the treatment they are studying is effective in fighting the disease. Phase 3 will test whether peginterferon lambda is more effective than already available, standard treatments. Hopefully, these three drugs continue to show positive results for HDV patients and will become widely available over the next few years. There are a number of other HDV drugs currently in development, but these are still in the early stages of clinical trial testing. You can stay up to date on the latest developments of these drugs by checking out the Hepatitis Delta Connect Drug Watch page. 

Dunleavy, K. (2022, October 28). Gilead hits surprise FDA rejection for hepatitis D drug already authorized in Europe for 2 Years. Fierce Pharma. https://www.fiercepharma.com/pharma/gilead-gets-fda-rejection-hepatitis-d-drug-already-authorized-europe-two-years 

Dunleavy, K. (2023, May 5). After FDA rejection, Gilead’s Hepcludex looks set for full EU NOD. Fierce Pharma. https://www.fiercepharma.com/pharma/gileads-hdv-drug-hepcludex-gets-thumbs-chmp 

Eiger announces both lonafarnib-based treatments in pivotal phase 3 D-LIVR trial in Hepatitis Delta virus (HDV) achieved statistical significance against Placebo in composite primary endpoint. Eiger BioPharmaceuticals. (n.d.). https://ir.eigerbio.com/news-releases/news-release-details/eiger-announces-both-lonafarnib-based-treatments-pivotal-phase-3 

Etzion, O., Hamid, S., Lurie, Y., Gane, E. J., Yardeni, D., Duehren, S., Bader, N., Nevo-Shor, A., Channa, S. M., Cotler, S. J., Mawani, M., Parkash, O., Dahari, H., Choong, I., & Glenn, J. S. (2023). Treatment of chronic hepatitis D with peginterferon lambda-the phase 2 LIMT-1 clinical trial. Hepatology (Baltimore, Md.), 77(6), 2093–2103. https://doi.org/10.1097/HEP.0000000000000309  

MYR Pharmaceuticals. (2020, September 17). Myr Pharmaceuticals launches HEPCLUDEX® in Germany, France and Austria. PR Newswire: press release distribution, targeting, monitoring and marketing. https://www.prnewswire.com/news-releases/myr-pharmaceuticals-launches-hepcludex-in-germany-france-and-austria-301133006.html 

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 

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 

 

What’s the Difference?: Herbal Remedies and Supplements vs. Western Medicine

What’s the Difference?: Herbal Remedies and Supplements vs. Western Medicine

Around the world, people consider the use of herbal remedies or supplements as a natural treatment for hepatitis B and/or D infection. These natural remedies have historically been advertised to boost the immune system and improve liver health. Herbal remedies or supplements are described as products made from botanicals or plants used to treat diseases and maintain health. They can be produced in a variety of forms including liquid extracts, teas, tablets/capsules, bath salts, oils, and ointments4.

Why do people choose to use herbal remedies?

The use of these products over time has social-cultural influences related to the distrust of and unfamiliarity with western medicine for management of hepatitis B or D infection. While herbal remedies have been used widely across cultures and contexts, patterns of racism, medical mistreatment, and inadequate delivery of care in western medicine have influenced the present state of treatment practices. In response to these barriers to sensitive and effective health care delivery, many groups such as Hmong and African communities often rely on herbal remedies and supplements to treat medical conditions and ease suffering.

Silymarin, milk thistle, and Kampo medicine

The distrust of western medicine has contributed to more widespread use of supplements such as silymarin (milk thistle) and Kampo medicine, as alternatives to manage hepatitis B or D infection. Many people believe that Silymarin can improve liver health through its antioxidant and free radical-fighting properties. Traditional Kampo medicine has been used for over 2,000 years to treat a variety of diseases including hepatitis B. One herbal treatment that is frequently used is bupleurum which many people believe can protect the liver or heal liver damage. Despite possible liver health benefits, neither supplement is a treatment for hepatitis B or D and may sometimes cause further harm to the liver4. It is important to note that there is presently no cure for hepatitis B.

False claims and bad interactions

Additionally, several alternative medicine companies often make false claims and testimonials to convince people to purchase expensive alternative treatments with false promises that are not based on scientific evidence. Herbal remedies and supplements may also interact with certain medications prescribed for those with hepatitis B and D, so it is important to seek the advice of a health care professional before use of any of these products3,4.

Strides in western health care

The long-standing hesitancy to participate in western health care is well-reasoned and firmly rooted in past wrongdoing on the part of often fundamentally racist institutions. While the western health care system remains far from perfect, it is important to remember that many strides continue to be made to correct the misdeeds of the past, and conversations around health equity and the social determinants of health (including racism) are becoming more and more common. Meanwhile, research has found that beliefs and misconceptions around western medicine can delay care and increase morbidity rates of hepatitis B in high-risk communities2.

It is vital for those living with hepatitis B or D to stay informed with scientific knowledge about supplements and herbal treatments to ensure these products are effective and safe in their daily life. The coordination of hepatitis B and D care by providers must do better to support those impacted by the viruses, in a way that is culturally sensitive and not dismissive of the harm that has been inflicted on communities of color and immigrant communities, who are more likely to be affected by hepatitis B and D1.  Health care professionals and other service providers must continually work to improve their cultural humility. In addition, health care institutions practicing western medicine must work harder to ensure care is equitable and safe, and to center the voices, stories, and insights of community members in their work to repair the impacts of structural racism and medical mistreatment that have caused such deep distrust in western medical treatments.

To learn more about effective hepatitis B and D medications, check out our Drug Watch page!

Disclaimer: Herbal products are not U.S. FDA-approved, and the Hepatitis B Foundation cannot endorse the usage of such products that lack regulation and scientific evidence to deem them both effective and safe.

References

  1. El-Serag, H., McGlynn, K. A., Graham, G. N., So, S., Howell, C. D., Fang, T., … & Thiel, T. K. (2010). Achieving health equity to eliminate racial, ethnic, and socioeconomic disparities in HBV-and HCV-associated liver disease. The Journal of Family Practice, 59(4 Suppl), S37.
  2. Mukhtar, N. A., Evon, D. M., Yim, C., Lok, A. S., Lisha, N., Lisker-Melman, M., … & Khalili, M. (2021). Patient knowledge, beliefs and barriers to hepatitis B Care: results of a multicenter, multiethnic patient survey. Digestive diseases and sciences, 66(2), 434-441.
  3. National Center for Complementary and Integrative Health website. Using dietary supplements wisely. (2019). Using dietary supplements wisely. https://www.nccih.nih.gov/health/using-dietary-supplements-wisely.
  4. US Food and Drug Administration. (2017). Information for consumers on using dietary supplements. https://www.fda.gov/food/dietary-supplements/information-consumers-using-dietary-supplements.