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Nargis Speaks about Living with Hepatitis Delta

The hepatitis delta virus is a sub-virus of hepatitis B that depends on the hepatitis B virus to survive and reproduce. Hepatitis delta affects between 5% and 10% of people living with hepatitis B, and can quickly progress to a more serious and advanced liver disease than HBV alone. Since 2016, the Hepatitis B Foundation has coordinated a program called Hepatitis Delta Connect, which works to raise awareness of hepatitis delta; promote screening, research, and management of the virus; and provide support to individuals living with and affected by the disease. This includes capturing the lived experiences of hep D. This month, Ariana, an intern at the Hepatitis B Foundation, interviewed Nargis, a resident of New York, who is living with hep B and hep D, about her experiences of the viruses, from diagnosis to management. We thank Nargis for sharing her story!

Ariana: Thank you very much for joining today! When were you initially diagnosed with hepatitis delta?

Nargis: I was diagnosed in 2005. I did my blood work at the end of 2005 and got my result at the beginning of 2006. The reason why I went to do the blood work is because I had very severe flu-like symptoms.

Ariana: How did you find out you were living with hepatitis delta?

Nargis: I was out of the city for a trip, and felt sick after, so I immediately returned to the city and did blood work and found that it’s hepatitis D. I was surprised because I know if you don’t have hepatitis B, hepatitis D would never exist in your body. 

Ariana: How did you initially feel about it?  

Nargis: To be honest, I was depressed. It happened during the best time of my life when my career was at a high point, and I’m feeling like I’m enjoying life and everything is fine. All the difficulties in my life were gone. During that time, I was at the top of the level of my career and I could do something for myself and for my family. And I had big plans, and when I was diagnosed with hepatitis B, all my plans just collapsed. My doctor just straight up told me that I’m lucky to have Hepatitis B and D, not C. They did not give me any kind of psychological support, and I was extremely depressed. Thank God for my family and my husband for being there to support me always.

I’m originally from Dushanbe, Tajikistan. It’s a small country in central Asia. Unfortunately we don’t have enough good medicine to help with this kind of thing, as the government is not supporting nor providing any kind of medication. The medication I needed had to be ordered from Russia to bring here, and was very expensive. The prices go up and down. And, this one is also not guaranteed to work. I got interferon, but it didn’t work for me. After one month of injections, I got very, very sick. And the doctor decided to stop it. 

Ariana: How do you think this disease has impacted your physical state?  

Nargis: Mostly it’s the mental changes when you are becoming depressed, but when you’re starting the treatment, you feel so weak. I had severe weakness, fatigue. I also had GI (gastrointestinal) problems as well.

You get kind of the nausea, no vomiting, just the nauseous feeling. But in the morning, you are feeling fatigued. You are always the one to sleep and have joint pain. Now I’m just feeling kind of the joint pain, but when I’m starting to work or do some activity, I get tired. I always feel the fatigue, you know, or the fatigue sometimes is so much, I don’t want to even do anything, but I always push to do things I should do. I often get bad pain.

But I’m always appreciative, you know, as I am still alive, and I have to thank my family for that.

Thank God. My third daughter was checked for hepatitis B and D too. Thank God, she got her vaccination, which is making us happy. Now I have four kids, and I’m calling my fourth child my miracle child, she gives me so much happiness. 

And all of them, all my kids are free from hepatitis B. They got all the vaccinations, my husband as well. And routine family life and my job are like keeping me in the life, making me happy, and I’m not thinking so much about my hepatitis. Thank God, I have my arms, my legs and I can eat, I can walk, I can see. This is more than enough to keep me happy.  

Ariana: Why is raising awareness of hepatitis delta important? 

Nargis: It’s important for people to know about it and I’m talking about my experience. I didn’t catch it from receiving medical care in my country, but a lot of people don’t know about this one and, if you don’t know, you don’t pay attention. We must be careful with  needles [which can possibly transmit hepatitis delta].

It is important to make information booklets, allowing patients to talk about their experiences, finding people similar to us, and we are people, we still have this disease, but we are very active, we can work, we can sing, do something good. 

It is better if you support each other as well, every person is important in this life, every person can be very important for somebody else.

People must know. If you’re somebody who doesn’t have education, maybe there’s some pictures with a simple explanation to tell them. It really works because, when HIV and AIDS existed in this world last century, the people didn’t know so much about it. And when the other foundations and the people and mass media started to get to work and explain, and gave out the information booklet, people are starting to pay attention now. And I’m thinking this can work for hepatitis as well.  

Ariana: What do you wish more people knew about this disease? 

Nargis: It’s hard to always be healthy. I wish for everybody to be healthy, but it’s now hard to be healthy, because you never know where you can catch hepatitis…And just so I can wish for people to keep their eyes open and not be afraid.

Keep your eyes open. Where are you going? What are you eating? Which kind of medical offices are you going to? If you have the blood transfusion, using the needles or something, or some kind of tools used for dental procedures, just to make sure all of them, they’re sterilized and clean. 

Be open mentally and healthy. It will help you in this kind of situation as well. You know, talk with somebody if you can talk with some of your family members or with people from outside. I’m an open person, and for me, it’s very, very helpful.

Also, Dr. Kushner invites me to Zoom classes where I hear about the Hepatitis B Foundation, the kind of research you have, what the people around the world are trying to do and how to help patients. It’s given me support. It’s given me kind of the hope that not everything is lost and I believe that some medication will be invented soon in the world to help the millions of people with hepatitis B and D. 

Ariana: What resources do you think you would have wanted initially when you got diagnosed with hepatitis delta?  

Nargis: Getting the right medication for people is very important. Insurance companies should help the patient to get the right medication. And also, I’ve been in a research study and the first research study I got is a medication for hepatitis B and D. The doctor teams are working specifically with this kind of patient when the patient goes to the hospital and does the blood work to see the level of the hepatitis B and D and also the liver enzymes. 

Also patients are depressed and always need some support group, maybe some social workers can closely work with people who have hepatitis B and D.

Ariana: Do you think there’s anything else you would like to share about your experience? 

Nargis: I would like to tell the people who have hepatitis B and D, do not be afraid. The doctors are working, and the research team is working hard. We’re not alone in this world. The Hepatitis B Foundation and many others are working on this problem. Do not lose hope. Be powerful, be happy, thank God we are alive, and support each other.

Ariana: Awesome. Thank you so much for sharing your insight and experiences with us today!

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

#justB Storyteller David’s Advocacy Journey

 

 

 

 

 

 

 

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

 

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

 

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

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

 

 

 

 

 

 

 

 

 

 

 

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

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

Differences in HBV Genotypes 

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

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

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

Social Determinants of Health 

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

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

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

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

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

 

References: 

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

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

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

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

 

 

 

 

 

 

 

 

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

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

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

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

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

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

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

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

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

This blog post is written by Lacey Hempeler, RN. 

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

  

HBV, Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Health, Living with Hepatitis B

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/ 

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Health, Living with Hepatitis B, United States

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/ 

HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Liver, Liver Cancer, Liver Health, Living with Hepatitis B

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.  

HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Hepatitis B Prevention, Hepatitis B Treatment

CHIPO Partner Highlight: Community Vision Group

 

 

 

 

 

 

 

 

The Coalition Against Hepatitis for People of African Origin (CHIPO) is a community coalition that was co-founded and is led by the Hepatitis B Foundation. CHIPO is made up of organizations and individuals who are interested in addressing the high rates of hepatitis B infection among African communities in the U.S. and globally. Over the past two years, CHIPO has grown its membership to include over 50 community-based organizations and federal agencies, all of which are working to meet the common goals of raising awareness about hepatitis B among African communities, and increasing rates of screening, vaccination, and linkage to care.

This month, we spoke with Richard Makhenjera of Community Vision Group (CVG) Malawi. CVG is dedicated to advancing a poverty-free society where children can live to their full potential by helping transform communities through shared responsibility. They have multiple programs geared towards improving the overall health of children and their families in Malawi and Cameroon. The Hepatitis B Campaign started in 2021 and is one of their health initiatives focused on raising awareness of hepatitis B in communities of Malawi and Cameroon. According to the Coalition for Global Hepatitis Elimination, the estimated prevalence of hepatitis B is 8.39% in Malawi and 4.22% in Cameroon. Richard highlighted some of the organization’s ongoing work to decrease the burden of hepatitis B, barriers to achieving this goal, and his recent experiences at the African Hepatitis Summit that took place in Abuja, Nigeria in October of this year.

Could you please introduce yourself and your organization?

My name is Richard Makhenjera. I work with Community Vision Group Malawi as Program Administrator and Board Member. Community Vision Group (CVG) is a non-governmental organization which is registered in Cameroon, UK, and Malawi.

Could you tell me a little bit about what some of Community Vision Group’s programs are that specifically address hepatitis and other health concerns?

According to a 2022 Chiwindi Survey done in Karonga and Lilongwe, 95% of those interviewed who were living with hepatitis B were not aware of their hepatitis B status (Riches et al., 2023). This shows the gap in awareness. Community Vision Group is addressing hepatitis concerns in Africa, particularly in the context of Malawi, through engaging the public during major hepatitis-related events including World Hepatitis Day, outreach to schools and churches, targeted outreach programs to villages, and engaging in hepatitis B screening.

What is the main geographic area in which Community Vision Group works?

There are twelve districts in Malawi. Currently, we are focusing  in Zomba district and surrounding areas as our catchment areas with hope that we can grow and move across the country of Malawi.

What are some of the biggest challenges in addressing hepatitis and other health concerns at the community level? How have you worked to overcome these? Are there any additional resources that would be helpful to have?

The biggest challenge at hand is to take hepatitis messages to the larger masses since our capacity is small in both human and financial resources. The other challenge is reception of messages regarding hepatitis. This is because of both religious and cultural beliefs where some people do not even want to hear any message to do with hepatitis because it is highly linked or related to HIV/ AIDS. There is also resistance when it comes to receiving medical care for those living with hepatitis, as some of them resort to going for traditional healing remedies which can be very dangerous to their health. More awareness work needs to be done.

Additional resources would be very helpful so that CVG can reach the communities with these messages. Examples of these resources would be funding, training materials, printed literature on hepatitis B to distribute to both urban and rural areas, testing kits, and of course availability of adequate health workers in rural hospitals. There are a few projects that would benefit from these additional resources. The first would be to create both electronic and print media so that people are able to access the messages easily. Second, it would help to continue with follow up on those who have tested positive and see if they are keeping up with the counsel given to them by the medical people. Finally, linking suspected cases to appropriate medical centers for testing confirmation with patient consent is another area that could benefit from support.

What do you think are some of the biggest barriers in raising awareness and addressing rates of hepatitis screening and linkage to care at the local, state, and federal levels? Do you think more could be done in these spheres to address this problem?

For Africa, particularly Malawi, the greatest barrier is traditional beliefs (cultural and religious). This is a very serious problem which is the root of most other identified barriers. This is a challenge which requires more awareness for people to change their perception so that they can receive messages related to hepatitis. I think we need to keep engaging the government authorities so that they introduce policies which motivate people to go for screening, and ensure that those found hepatitis B-positive start receiving medical care immediately. The absence of screening centers and medical care givers in rural areas is also another big barrier.

What are your favorite parts about your job?

More of my work in CVG is that of social work which is to engage with the masses in communities. I feel good when people get the right message on certain life-threatening issues and see them responding positively to the message.

Any other thoughts or ideas you’d like to share for improving health and closing health disparities among those in Africa?

For Africa, we are always at a disadvantage in several areas. Our medical facilities are not that user-friendly, and some areas do not even have access to medical facilities. It also takes time for people to get the right information on life-threatening issues. The absence of well-qualified medical doctors in rural medical centers or hospitals is also a threat to our health system. If we in Africa could address these health disparities, Africa would be safe for her citizens.

Can you share a little bit about your recent experience at the African Hepatitis Summit and how that meeting has helped advance your organization’s efforts?

The African Hepatitis Summit provided a platform for me to increase my understanding of viral hepatitis in my capacity as a social and community worker who directly spends more time with the people who have little or no knowledge of hepatitis. After the summit I felt more energized to increase the awareness campaign and other interventions so that this virus is completely eliminated in our communities. As CVG Malawi, this summit is indeed an eye opener as it has added to our intellectual resources and now, we must implement the new ideas learned at the Summit. 

I also attended a presentation from Confidence Nchinda, Program Administrator for Community Vision Group Cameroon, on “The Importance of Mother-to-Child Prevention : Perspectives of CVG Intervention in Cameroon.” She spoke from her personal experience with concerns during pregnancy about mother to child transmission (MTCT). She further presented on what CVG does in Cameroon so that there is no transmission from pregnant mothers to their children. For example, they do radio talks and outreach to churches, especially targeting women-led associations. They also engage in talks with pregnant women during antenatal care (ANC) visits in health centers. On radio talks their emphasis is on screening of pregnant women and postpartum periods. At CVG in Cameroon they also have priority actions for the prevention of MTCT. For example, mandatory antenatal hepatitis B surface antigen screening – thus the ongoing program, linkage to care and support for those testing positive to further reduce risk of perinatal transmission – of course, this is yet to start depending on resource availability.

View Hepatitis B Foundation toolkit on preventing MTCT here!

Thank you to Richard for taking the time to discuss CVG’s important work and to the rest of the staff and volunteers for their efforts to reduce the burden of hepatitis B in Africa! Check out pictures of CVG in action below!

Confidence Nchinda from Community Vision Group Cameroon presenting during the African Hepatitis Summit

 

 

 

 

 

 

 

 

 

CVG member raising awareness about hepatitis B in their community.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Riches, N., Njawala, T., Thom, N. J., Mkandawire, C., Mzumara, W., Phiri, F. P., Banda, L., Stanley, A. J., MacPherson, P., Stockdale, A., Crampin, A. C., & Nkoka, O. (2023). P23 The chiwindi study: results from a community-based hepatitis B serosurvey in Karonga, Malawi. Poster Presentations. https://doi.org/10.1136/gutjnl-2023-bsg.96

HBV, Hepatitis B Awareness, Hepatitis B Prevention, Hepatitis B Research, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Cancer Awareness Month, Liver Health, Research

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

300 Million Reasons, About Hepatitis B, Clinical Trials, HBV, Hepatitis B Advocacy, Hepatitis B Research, United States

Podcast Recap: How Clinical Trials Work in the United States

 

 

 

 

 

 

 

 

 

 

 

 

 

In a recent B Heppy episode on clinical trials, Dr. Yasmin Ibrahim, Public Health Program Director at the Hepatitis B Foundation, discussed the process of how clinical trials work and the importance of clinical research in moving forward public health programs and interventions. 

What is a Clinical Trial? 

A clinical trial (also called clinical research) is the process for approving new medications or devices for a known health condition or disease. When people hear the term clinical trial, they may hink immediately that participants of that trial are at risk. What most don’t know is that before a medication or medical device is tested on human beings, it must go through a very rigorous process with approval from regulatory authorities and agencies. This is why clinical trials go through phases of approval and safety checks in the research process. We have outlined the phases of clinical trials below to help provide an understanding of the process.  

Pre-clinical or lab studies: Before the drug can be tested on human beings, it is thoroughly researched on living cells and then animals with similar biological makeup, to assess its efficacy (benefits) and safety. 

Clinical Phase I: Researchers test a new drug or treatment on a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify any side effects. 

Clinical Phase II: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety. 

Clinical Phase III: The drug or treatment is given to large groups of people to confirm its effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug or treatment to be used safely. 

Clinical Phase IV: Studies are done after the drug or treatment has been marketed to gather information on the drug’s effect in many different populations and determine any side effects associated with long-term use of the product or drug. 

All new treatments must go through clinical trials before being approved for use by the United States Food and Drug Administration (FDA), European Medicine Agency (EMA) or any other local regulatory authorities depending on the country.   

Advancing and Sustaining Public Health through Research 

Clinical trials are important because they are the safest way to develop and discover new treatments that work to cure diseases or improve the health and quality of life of patients. Because clinical trials have very strict safety regulations, they also tell us if a treatment is safe for people to use.  

Eligibility Criteria for Participation in Clinical Trials  

Eligibility criteria for clinical trials depends on the type of research being conducted. If a vaccine is being tested, then most participants are healthy to assess the response of the vaccine on the body’s immune system and the ability to produce protective antibodies. In some clinical trials that focus on certain populations or multiple conditions, the criteria may be more specific (e.g., testing the HBV treatments on people living with hepatitis B and diabetes). Study design and objectives determine participant eligibility and criteria. 

Diversity and Inclusivity in Clinical Trials 

Historically, clinical trials have neglected participation from minority populations and under-served communities. For example, sub-Saharan Africa has one of the highest burdens of hepatitis B globally, but clinical trials for hepatitis B are inadequate in those areas. The people who need access to clinical research the most are often denied access to these opportunities due to geographical barriers, lack of political will, regulatory issues, and other logistical challenges. It is important to ensure that all people who are directly impacted by hepatitis B should have access to participating in clinical trials and affording innovative therapies to improve their quality of life. There are steps that pharmaceutical and biotech companies, medical researchers, and public health organizations can take to diversify participation in clinical research. This involves including local patient-centered organizations and patient advocates in the clinical trial participation recruiting process. Partnering with a community is a helpful strategy to build trust with the community and engage people in research. Communication is integral to ensuring that participants fully understand the extent of their participation and the goals behind the research. Participants are encouraged to ask questions from the recruiters before agreeing to participate in the research.  

Find Clinical Trials for Hepatitis B here: https://www.hepb.org/treatment-and-management/clinical-trials/ 

Questions to Ask Providers and Researchers about Clinical Trial Participation: https://www.hepb.org/treatment-and-management/clinical-trials/ask-a-doctor/ 

To listen to the full episode on our podcast, B Heppy, click here. https://bheppy.buzzsprout.com/1729790/13443280 

 

Baruch S. Blumberg Institute