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Why Postpartum Women Struggle with HBV Treatment Adherence and What We Can Do About It

 

 

 

 

 

 

 

 

 

Hepatitis B remains a global health challenge.. There are strategies to prevent perinatal (mother to child) transmission of hepatitis B. Prevention includes testing all pregnant persons for the marker of hepatitis B infection (HBsAg), if the pregnant person is positive, then assessment is needed throughout pregnancy. If the pregnant person’s viral load becomes high, antiviral treatment (TDF) might be recommended during the second trimester taken throughout pregnancy. Data shows this is safe and effective, and reducing the viral load can reduce the risk of transmission.  

Additionally, making sure that all infants get hepatitis B birth dose as soon as possible after delivery, ideally within the first 24 hours of birth followed by at least two subsequent doses of hepatitis B vaccine (usually part of global childhood immunization series ex: the pentavalent vaccination). However, for many individuals, adhering to these guidelines in many parts of the world can be a challenge. Recent research sheds light on the barriers and opportunities to improve treatment adherence during this important period. Treatment adherence means taking your medicine the right way, at the right time, in the right amount, and for as long as your doctor tells you. It’s about sticking to your treatment plan to maintain your health.  

The postpartum drop-off: a hidden risk 

A study published in the Journal of the Pediatric Infectious Diseases Society explored adherence to tenofovir disoproxil fumarate (TDF), a medication used to treat HBV, among pregnant individuals. While adherence during pregnancy was relatively high, many women discontinued treatment postpartum. A mix of factors contributed to the drop in HBV treatment adherence following delivery including:  

  • Lack of follow-up care after delivery 
  • Low awareness about health risks that may come from stopping medication 
  • Limited knowledge about the long-term benefits of continued treatment 
  • Healthcare system gaps, especially in low-resource settings, making access to care and medication difficult 

What the numbers say?

In a broader context, a study from Israel found that only about 67% of chronic HBV patients maintained high adherence (defined as taking at least 80% of the prescribed medication). Many women stopped taking their medication after giving birth or were not consistent with their medication routines (Mor et al., 2022). A 2025 pilot study published in Virology Journal looked at what happens when women with chronic hepatitis B stop taking antiviral medication after giving birth. Among 88 women who discontinued treatment postpartum, nearly 29% experienced liver inflammation (ALT flares)—a sign that the virus was becoming elevated (Tang et al., 2025).  

What can be done? 

Improving postpartum adherence to HBV treatment requires a holistic approach and strategies can include: 

  • Integrated care models that link obstetric and hepatology services, making it easier for women to stay on track with their hepatitis B care and medication 
  • Patient education that emphasizes the importance of continued treatment beyond pregnancy 
  • Support from community health workers to provide follow-up and encouragement to stay connected with hepatitis B care 
  • Mobile health tools (like SMS reminders) to help new mothers stay on track after delivery 

The postpartum period is a time of immense change—and often, medical follow-up takes a backseat. But for women living with HBV, taking efforts to prevent perinatal transmission is crucial not just for their own health, but for preventing the future generation from hepatitis B. With better systems, education, and support, we can close the adherence gap and protect more lives. 

To learn more about prevention of perinatal transmission of hepatitis B, you can also visit the Hepatitis B Foundation’s Informed Training Hub, which includes modules on perinatal prevention. 

References: 

Greenup, A. J., Tan, J., Nguyen, V., & Visvanathan, K. (2020). Adherence to antiviral therapy for chronic hepatitis B during pregnancy and postpartum: A prospective cohort study. Journal of the Pediatric Infectious Diseases Society, 9(3), 289–295. https://doi.org/10.1093/jpids/piz064 

Mor, Z., Grotto, I., & Anis, E. (2022). Adherence to antiviral therapy among patients with chronic hepatitis B in Israel. Israel Journal of Health Policy Research, 11(1), 1–9. https://doi.org/10.1186/s13584-022-00527-2 

Tang, Q., Wang, C., Li, H., Chen, Z., Zhang, L., Zhang, J., Liu, X., Xue, Y., Qiu, Y., Peng, M., Zeng, Y., & Hu, P. (2025). Unexpected HBsAg decrease after nucleoside analogues retreatment among HBeAg positive postpartum women: A pilot study. Virology Journal, 22, Article 36. https://doi.org/10.1186/s12985-025-02632-x 

World Health Organization. (2024). Guidelines for the prevention, diagnosis, care and treatment for people with chronic hepatitis B infection (WHO Guidelines). https://www.who.int/publications/i/item/9789240090903 

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Disclosure: How to tell your partner, family, or friends about your hepatitis B or D status: Tips and tricks

 

 

 

 

 

 

 

 

 

Written By: Soumen B., Silvana L., Partizan M. 

Sharing a diagnosis should not be, but often it is, a challenge. At some point it is important to tell your partner, family or friends about your hepatitis B/D status. This is an important moment for you and the people with whom you share your daily life. 

Remember: Your comfort is just as important as the person you choose to talk to. You might be nervous, or you may be worried about what they will think and how they will receive the information you are about to share. You should know that not everyone will understand but you can be prepared with as much information as possible to be sure to set yourself up for success in this conversation. Know that most people do not know about hepatitis B, how it is transmitted or the health problems it causes. But for you, it is a step you should take: to live a normal life, to live honestly and to foster love and sincerity with others. For this, you need to prepare spiritually and emotionally. With preparation, this can be a moment of liberation for you. Remember: you have the right to share exactly as much as you are willing to and nothing more.  

Preparing to disclose your hepatitis B and D status 

Give yourself enough time to understand your emotions and to prepare for the emotions of your loved ones. Before disclosure, it might be helpful to think about the following:  

  • Your readiness: make sure you feel emotionally prepared to talk about your health. Disclose when you feel ready to handle a range of possible reactions.  
  • Their readiness: pick a moment when the other person is likely to be calm, receptive and not distracted or stressed.  
  • Level of trust: assess whether the person is trustworthy, empathetic and respectful of your confidentiality.  
  • Learn about your condition: Understand what hepatitis B/D is, how it is transmitted and how it is managed. This helps you feel more confident when talking to others. 
    • Write down the main things you would like to tell your person: what the disease is, how long you have known, what your condition is and what they can do to check their status.  
    • Read what you have written several times – how do you feel while you are talking? 

Think about why you are sharing this: To protect their health? To ask for their support? Is it about transparency or deepening trust

  • Talk to them and explain what you expect out of the conversation. Maybe you want them to know why you no longer drink alcohol at family gatherings or why you may need more rest than normal. Or maybe you want them to offer you their time and support so that you can talk about your fears. 
  • Choose a calm, private moment when you both have time to talk. 
  • Do not do it under pressure or during an argument. 

 

Now imagine that you are in the role of a listener and your loved one tells you that they have hepatitis B, which you know nothing about.  

  • What would you like to ask them, and to know? Putting yourself in the other person’s shoes will help us to imagine their emotions, fears, denial–these are normal human reactions and they will fade away with the time and the right information given. 
  • Anticipate reactions: Some people may be scared at first, especially due to a lack of information. Be patient. 
  • They may ask you questions that you don’t have an (or don’t want to) answer–be honest and leave that part for another time.   

 

Key points for your conversation: 

  • Share what hepatitis B and D are and how they affect your health. This can help your partner/family better understand the situation and reduce any uncertainties. 
  • Helping your person understand that it is a chronic condition that for some people requires taking a pill a day like so many other chronic conditions, such as high blood pressure, can help “normalize” the disease. 
  • Take the time to explain that a chronic illness does not just depend on the medications you might take, but also on food, exercise, rest and your mental health. 
  • Talk about how this is a shared journey, and that your family members’ or partner’s collaboration will be a key to your success navigating this journey. 
  • How hepatitis B and D Can Be Spread: You can reassure others that there is no risk of transmission in everyday interactions like hugging, sharing food, or casual touch. Hepatitis B and D can spread through contact with blood and other bodily fluids during sexual relations and other blood-to-blood contact. 
  • Emphasize that there is a very safe and effective vaccine for hepatitis B, and prevention is possible. 
  • Check with your local health services to see how they can obtain the vaccine. It may be helpful to give them printed or online materials about the disease or show them a video of patients sharing their stories.   
  • You can live well with proper medical care. 

 

For example, you might say: 

“I want to share something important with you because I trust you and I want to be honest. I was recently diagnosed with hepatitis B (and I also tested positive for hepatitis delta). It’s a virus that affects the liver, but I am under medical care and taking care of myself. I didn’t choose this, but I want you to know because it’s part of my life now.” 

You can also watch this storyteller video, where MD shares her experience disclosing her status to her boyfriend. 

If you are afraid of a negative reaction: 

  • You can say it more neutrally: “I have a liver virus that I am keeping under control with the help of doctors.” 
  • You can ask for the help of a health care professional to clarify the situation for them. 

In everyday reality, the reactions of social groups are different. This is related to various factors such as the level of education, relevant medical information, social relationships and so on. Educational and cultural backgrounds have a significant impact on how individuals and social groups understand and respond to hepatitis B and D.  

  1. Educating your partner or family member
  • Proper education can positively influence people’s attitudes. You should provide as much information as possible when disclosing your status to them. With more information, they may be more open to supporting you rather than perpetuating stigma or having discriminatory attitudes. 
  • By giving them enough information, they can share hepatitis B (and D) information with others, contributing to community education about both diseases, and helping to reduce fear and uncertainty. 
  • Explain to them that this does not have to be a one-time conversation. Reassure them that you are open to talking more about this, so they can ask their questions and start feeling comfortable. 
  1. Cultural Beliefs and Social Norms
  • Be aware and mindful of the cultural background of your partner, or the social norms of your family. This will help you navigate the conversation about your hepatitis B/D. 
  • In many cultures, diseases like hepatitis B and D are associated with taboos. Culture can influence how people perceive these conditions and can create an atmosphere of fear and stigmatization. 
  • In some cultures, there are beliefs that influence how individuals view medical treatment. For example, seeking medical care may be seen as a sign of weakness or an admission of a “problem” that could negatively affect a person’s reputation. This perception may contribute to a negative attitude toward individuals affected by hepatitis B/D. 
  • In some cultures, family and community can provide significant support to individuals with chronic illnesses, such as hepatitis B/D. However, in other cultures, there may be more isolation and limited help, especially if the individual faces stigma. This impacts their emotional well-being and access to treatment. While all of these experiences can happen, know that you are not alone. You can learn more about others experiences through the Hepatitis B Foundation’s storytelling program or connect with others online through the Hep B Community.  

  

These aspects influence knowledge, attitudes, and reactions people may have toward hepatitis B/D. You deserve to be treated with respect and dignity—your life is your own, and no one has the right to diminish that. As you consider sharing your health status, it’s important to reflect on these factors and prepare for the range of responses you might encounter. 

How should you prepare? 

  • Tell those you trust: You do not have to tell everyone. 
  • Focus on facts, not fear: Many people react based on the information they lack, not the facts you know. 
  • Find an ally in the family who can help communicate with others. 
  • Do not blame yourself: It’s not your fault. This is a virus – not a shame. 

 

No matter how the conversation unfolds or what emotions surface, one thing is clear—your loved ones care deeply about your health and well-being. Speaking honestly and from the heart is always a meaningful step. What matters most is choosing the right moment and the words that feel true to you and your experience. 

You can read more about the importance of disclosing your status, and advice for telling your partner or family, in this blog.

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Importance of disclosing your hepatitis B and hepatitis D status

 

 

 

 

 

 

 

 

 

Written By: Soumen B., Silvana L., Partizan M. 

Thirteen years ago, I experienced a profound shock. My wife was in the third trimester of her pregnancy, and I was eagerly anticipating fatherhood, filled with plans for our future with the baby. As part of routine procedures, we both were asked to undergo various diagnostic tests. One day, the gynecologist unexpectedly called us in for an urgent meeting. I was asked to wait outside while my wife entered the doctor’s office. When she emerged after half an hour, I noticed a deeply worried expression in her eyes. As I greeted her, she responded with a blank stare, as if the world were crashing down around her.  

We returned home in silence, and then she broke down in tears. My wife shared with me that my blood test revealed I was infected with hepatitis B. How could this have entered my body? The doctor told my wife that the disease was terminal and that I might not survive for long. Our world began to crumble. I have always been a respectful and loyal family member with minimal alcohol consumption. How could this happen to me?  

The most challenging part was figuring out how to explain this to my wife… 

After I was diagnosed, I began online research and reached out to a nonprofit organization (Liver Foundation West Bengal). I gathered information about the disease and accessed health support. I then had an open and candid discussion with my wife, free of embellishments. I explained that I was one of millions affected worldwide and that the disease could have been transmitted through less common means, such as unsterile equipment used during a haircut, like razors, at the salon.* She was extremely cooperative and listened patiently. She also helped me confront the stigma and face the reality of the situation. My wife and I looked up more information so that we could learn about hepatitis B. We talked to our doctors to learn about how we can reduce the risk of transmission and maintain our health. My wife made sure to receive the hepatitis B vaccine, and we made certain that our baby received the vaccine immediately after childbirth.  

Later, I took her to meet members of the nonprofit, including experts and other patients, to engage in an open conversation about the disease and its implications. Both my wife and baby are now vaccinated and protected against hepatitis B infection. 

 

* Hepatitis B is highly infectious, and if tools and surfaces are not properly disinfected, it can survive for up to seven days. If you are exposed to hep B from a small wound (like the ones that happen during a short hair cut or shaving with tools that are not sterilized), even the smallest drops of blood from someone living with hepatitis B could cause an infection. Sexual transmission is a primary mode of transmission for hepatitis delta. 

 

Key Questions and Answers from this Story:  

If hepatitis B is sexually transmitted, how come my partner isn’t infected? 

Hepatitis B virus (and hepatitis delta virus) can be sexually transmitted. The virus is present in an infected person’s blood and bodily fluids commonly exchanged during sexual activity, such as semen and vaginal fluids. There are many reasons your partner might not be positive for hepatitis B after sexual activity including: 

  1. Vaccination status: If your partner has received the full schedule of the hepatitis B vaccine, they are likely protected. The vaccine prompts your body to start producing antibodies that neutralize (attack) the virus. This stops hepatitis B from infecting your body. 
  1. Viral load: The amount of hepatitis B in your blood and bodily fluids—known as the viral load—affects transmission risk. A lower viral load reduces the likelihood of transmitting the virus to your unprotected/unvaccinated partner during sexual contact. 
  1. Type of sexual activity: Different sexual practices carry varying levels of risk. Anal sex poses a higher risk due to potential tissue damage and blood contact. Oral sex is considered “less risky” since it is less likely that there will be blood contact. The presence of cuts or sores can increase one’s risk of infection. It is always a good idea to use protection (latex condoms) when engaging in any form of sexual contact. 
  1. Use of protection: Consistent and correct use of condoms significantly reduces the risk of hepatitis B transmission to your partner by preventing direct contact with infectious fluids. While condoms are crucial in reducing the risk of transmitting hepatitis B (and D) during sex, they do not eliminate the risk completely. New condoms must be used every time you and your partner have sex, from start to finish. Latex or polyurethane condoms are most effective; avoid natural skin (lambskin) condoms, as they are not as good at blocking the virus. 

  

For peace of mind and health assurance, you and your partner should consider: 

  • Testing: A blood test can determine if your partner has been exposed to hepatitis B or has developed immunity from a previous infection. If they are not protected, they should start the vaccination series. 
    • If you are living with hepatitis B, it is important to ask your doctor to test you for hepatitis D. 
  • Vaccination: If a person is not already vaccinated, receiving the hepatitis B vaccine is the only way that one can achieve full protection against the virus.  
    • There is no vaccine solely for hepatitis D, but since hepatitis D relies on hepatitis B to survive, the vaccine protects against both viruses. 
  • Discuss your status: If you are starting a new romantic or sexual relationship, you should consider telling your partner about your hepatitis B (or D) status before any sexual encounter. By sharing your status, you not only instill trust in your relationship and build confidence; you and your partner can also take the necessary steps towards reducing your risk of transmitting the virus.  

You can read more about tips and tricks about disclosing your status to family members in this blog

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The dangers of unregulated alternative medicine for people living with hepatitis B: Why evidence-based information matters!

 

 

 

 

 

 

 

 

 

Alternative medicine is becoming more popular, but it can be risky, especially when it’s not regulated. This is a big concern for people living with hepatitis B in places where access to medical care and treatment options may be limited. Some people sell untested treatments, promising quick cures without any scientific proof. These treatments can actually make things worse for patients. It is also important to note that currently there is no cure for hepatitis B but there are safe and effective medications to manage your condition and improve your health. 

Why unregulated alternative medicine is risky:

When alternative medicine isn’t regulated, it means the treatments haven’t been properly tested. For hepatitis B patients, using these treatments can lead to serious health problems. The safety and effectiveness of these treatments aren’t guaranteed, and they can sometimes cause more harm than good. Some practitioners claim their treatments work because of divine intervention and charge high fees, taking advantage of patients’ financial circumstances and leading to false hope in their medical care. 

Why evidence-based health decisions are important:

Making health decisions based on scientific evidence is crucial. Evidence-based medicine uses the best available research and clinical expertise to make decisions about patient care. This approach helps ensure treatments are safe and effective. 

For people living with hepatitis B, evidence-based methods are especially important. Chronic hepatitis B can cause serious liver damage, and managing the condition requires careful monitoring and appropriate treatment. The World Health Organization (WHO) warns that while some alternative medicine practices can be beneficial, the lack of regulation and scientific validation can make them dangerous. 

While the idea of quick fixes through alternative medicine can be tempting, it’s essential for hepatitis B patients to prioritize evidence-based treatments. By doing so, they can make the best decisions for their health and well-being. Always consult healthcare professionals and rely on credible sources to guide your health decisions. 

Safe and effective treatment for hepatitis B: 

People with chronic hepatitis B can live long and healthy lives by making liver-friendly choices like regular check-ups, avoiding alcohol and tobacco, and eating healthily. Approved drugs for adults and children help control the virus and reduce the risk of serious liver disease, though there’s no complete cure yet. 

Treatments fall into two categories: 

  • Immune modulator drugs: Interferon-type drugs that boost the immune system to fight the virus, given as shots for 6 months to 1 year. 
  • Antiviral drugs: Pills taken daily to stop or slow the virus, reducing liver inflammation and damage, usually taken for at least 1 year. 

Not everyone with chronic hepatitis B needs treatment; it’s most effective for those showing signs of active liver disease. 

Helpful resources for hepatitis B patients 

To make informed health decisions, it’s important to rely on credible sources and consult healthcare professionals. It’s also important to do your own research to find out more about the benefits or harms of a medication or herbal treatment. Here are some resources to help: 

Centers for Disease Control and Prevention (CDC): The CDC provides comprehensive information on Hepatitis B treatment options, including antiviral medications and lifestyle recommendations. 

Hepatitis B Foundation: This organization offers detailed guidance on managing Hepatitis B, including the latest research on treatment options. 

 

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Lived experiences of clinical trials and how patient insights can improve equity in process and outcomes

 

 

 

 

Authors: Lori Scott, Amanda Goldring, Joe Balestreri, Philip Kwame Yeboah, Kenneth Kabagambe, and Prince O. Okinedo  

Patient involvement in research means they are included as active partners in all stages of the research process. In other words, patient involvement ensures that research is carried out with patients, instead of research being done to patients [1].  

 

Patient involvement is essential throughout the drug development and clinical trial process to ensure patients’ clinical needs and preferences are met [2]. When clinical trial teams do not involve patients as research partners to identify appropriate research outcomes and co-create study designs, the teams may fail to achieve meaningful outcomes. More and more researchers are realizing that the personal experiences of patients and their caregivers are not just useful, but vital to the design of clinical trials. 

 

Patient participation in clinical research is crucial for informing patient recruitment and retention efforts that can ultimately speed up the development and potential market availability of medicines and diagnostics [3]. In the end, patients are the intended recipients of the products of clinical research, and if patients are actively involved in research, they can effectively improve outcomes. 

 

The following four sections share real life stories and lived experiences of individuals trying to participate in clinical trials, and the challenges they have faced. The patients and caregivers who contributed to this blog have personal experiences with applying for, enrolling in, and being rejected from clinical trials, and know of the treatment consequences when patients are not involved in their care plans. Based on their experiences, they have suggested many ways to incorporate the patient voice into drug development and clinical trial design, from recruitment, enrollment and retention methods to informational materials for patients, to help industry and academia develop more accessible clinical trials and research efforts. 

 

Please note: Following the four accounts of personal experiences, there are seven specific suggestions for researchers.   

 

Lori’s lived experience: Challenges identifying and applying for clinical trials (2018) 

There is no clear pathway for patients when trying to find and apply for clinical trials, and much of the effort is placed on the patient to move through the process.  

 

Currently, it seems the internet search bar is the best option for patients trying to join clinical trials, and recruitment is not happening at the local level in communities and even in doctors’ offices. This process places a significant burden on the patient and needs to change.  

 

My daughter’s diagnosis of hepatitis B, hepatitis D and other rare digestive diseases did not come with a map. We had to start with the internet and do our own research. I would work all day and research all night; I was in a fight for my daughter’s life. We learned about some potential clinical trials through the Hepatitis B Foundation’s Clinical Trial page and how to apply for study participation. When my daughter applied for a clinical research program with the National Institutes of Health (NIH), I had to figure out the whole process from finding information to applying and getting screened. 

 

We were excited when she was accepted for the first phase of the trial, but as I understood later, my daughter’s study group was one of the first of this trial. The trial was not well organized, and it seemed that the research team was not cohesive. It seemed that the staff did not know if the patients had full understanding of all that would happen in the clinical environment. Participants involved in the consent process need to understand that research is distinct from clinical care. Research eventually benefits society rather than the participant. It is also necessary to understand expectations and risks involved in participation, and that someone knowledgeable is available to go over questions and concerns before the consent signature. 

 

While the travel was well coordinated, it was difficult for my daughter due to her frail physical condition. When we arrived, some of the specialists assigned to her care were on vacation or otherwise unavailable, which was heartbreaking as we were informed of my daughter’s very full itinerary before planning our trip to the center, to ensure she would receive all planned evaluations. We had planned specifically for these two days and that somehow did not happen. These physicians were vital to the study process, and the evaluations should have been postponed until those key people were available. 

 

We returned home with little communication from the program after their testing, which they told us would be normal. A year later, we received a letter from the organizers, stating that they were releasing her from the study but would keep her data in the system. 

Reflecting on this experience, I was disappointed in the way the trial was organized. If there was a patient navigator, or clear informational sources, we would not have had to guess what was happening next for the entire time we were at the research site. Because it wasn’t well explained, we had unmet expectations of the study. Despite these shortcomings, we are glad to have participated and felt we learned so much about research. 

By gaining a deeper understanding of patients’ and caregivers’ lived experiences and challenges, organizations offering clinical trials can become a true asset, providing the valuable data needed for future research. 

 

Amanda’s lived experience: Clinical trial rejection (2020) 

It was only a couple of months after my hepatitis B diagnosis that my liver nurse called to ask if I would be willing to apply for a clinical trial. The trial team was trying to find a functional cure for HBV. She said that she could not guarantee that my application would be successful, as she did not know the criteria for acceptance, but it was worth a try. 

I sent off my application form and waited to hear back.  

 

Initially, I was very excited at the thought of participating in a trial. Even if the trial came to a dead end, it could possibly be another step towards a functional cure. I watched for the post each day, hoping for an acceptance letter. As time went on, I was sure that I had a place on the trial. Surely, if I did not meet the criteria I would have heard back almost right away. To save disappointment, it would have been better for the “acceptance criteria” to be transparent, either at the start before my nurse had become involved, or at a later stage on the application form. In this case I was given no patient-facing materials. Surely this should be a standard requirement. 

 

Time passed and eventually the letter I had waited for dropped through my letter box. On opening it my heart sank–it was a rejection letter. Due to being diagnosed with Crohn’s disease (a type of irritable bowel disease that makes your digestive tract become swollen), I was not suitable for the trial. The letter tried to let me down gently, saying that maybe I would be suitable later. However, it gave me false hope and for months I hoped that a letter would arrive inviting me to participate in the trial that did accept Crohn’s patients. Eventually, I realised that this letter was never going to come. My world, which was already dark, felt darker. I felt that society was rejecting me and now the drug trials were too. Drug researchers should consider patients’ feelings when rejecting their application. They should implement quick responses and avoid using language that may give false hope for future acceptance into another clinical trial. 

 

Thankfully, I have moved on from this dark period in my life. I have accepted that I will probably never be eligible for a clinical trial, as a functional cure seems to rely on strengthening the immune system. My Crohn’s treatment relies on suppressing the immune system. It would have been kinder, in the long run, not to give false hope. An explanation as to why Inflammatory bowel disease was excluded would be far better than “maybe at a later date.” As patients, we are used to hearing stark news and although it might be painful to hear, we eventually do accept it – we have no choice. 

 

There is hope after being rejected for a trial. There will possibly be other drug trials to apply for and if not, the pot of gold at the end of the rainbow will eventually be a functional cure for this or the next generation. 

 

Researchers must consider patients’ feelings when rejecting their applications. Implementing quick responses is not just a matter of efficiency; it also shows respect for the patient’s time and effort. 

 

Joe’s lived experience: Clinical trial participation (2013 to 2019)  

When I signed-up for the National Institutes for Health’s (NIH) clinical trial to find a treatment for hepatitis delta in 2013, I didn’t know how it would affect my life overall. I was focused on getting help. 

 

The NIH was accommodating in many ways concerning my practical needs. For U.S.-based patients in my trial, airfare, lodging on campus, and most land transportation was paid for by the NIH.  

 

But there were many challenges to being in a trial far from home. Looking back, I figured each of my 70 round trips from California to Washington could cost me $100-200 in lost wages and travel expenses. There were also challenges getting to D.C. for weekly appointments, which required 16 to 20 hours of travel round trip. These visits were crammed with many weeks’ worth of tests, scans and doctor appointments. Sometimes, poor communication from the NIH led to confusion about my travel arrangements. Other times, my symptoms were so bad that I couldn’t bear a long plane ride plus getting to and from the airport. 

 

Communication with the NIH was good but sometimes lacking, especially as it was difficult getting my hepatitis delta test results. Oftentimes, I did not receive clear and adequate explanations of my results.  

 

If I were involved in redesigning my study, I would have urged the researchers to have a better understanding of what patients and their loved ones go through just getting to the NIH, including the financial, physical and social costs, as well as time commitment. When clinical trials are informed by patients, other patients in the community are more likely to volunteer for trials AND are more likely to stay committed to participating, as the challenges mentioned above (personal hardships, communication issues) have been accounted for during the clinical trial design. 

 

Philip’s: How patient involvement in research can enhance hepatitis care in Africa 

Patients in Ghana are not involved in clinical research, despite existing research infrastructure. There are many clinical research institutions, including the Ghana I Noguchi Memorial Institute for Medical Research and Kumasi Centre for Collaborative Research. These are the same research institutions that train the doctors who handle hepatitis B.  

 

Linking it to my late brother’s story, I remember when Komfo Anokye Teaching Hospital in Kumasi, Ashanti region, Ghana, booked my brother who was living with hepatitis B on Aug. 17, 2017, to come for treatment on Sept. 4, 2017. Because there are a limited number of doctors who were available to treat people living with hepatitis B, my brother had to wait for weeks for a doctor’s appointment. During this waiting period, I updated the hospital on my brother’s deteriorating condition many times, but they insisted that he must wait until the booked date. At exactly 8:15 a.m. on Tuesday morning, 5th September 2017, heartbreakingly, I saw my brother Emmanuel, also known as Action man, giving his last breath. Because there was no patient involvement in care plans in Ghana, there was nothing to help my brother’s condition, as he was diagnosed too late, and there were no clinical trial opportunities to explore (to our knowledge), despite the apparent need. If those living with hepatitis B had more say in their care plan, they would be able to communicate directly with researchers about their conditions and be guided accordingly, and appropriately for their individual cases. 

 

After my brother’s demise, our immediate family members went to get tested for hepatitis B. We all tested negative for hepatitis B infection, and we took the vaccine. Based on these experiences, I have taken it upon myself to educate the public about the deadly but preventable hepatitis B infection on social media platforms and radio stations. Currently, I am the Ashanti Regional Representative for Hepatitis Foundation of Ghana and a member of the Hepatitis B Foundation’s Global Hepatitis B and D Community Advisory Board.  

 

People with lived experience have insights that can help inform researchers and clinical trial developers in their research efforts and encourage them to seriously consider patient inputs during all steps in the drug development process, from clinical trials to developing patient care plans.  

 

Kenneth: How patient involvement in research could have future impact on care/treatment practices 

Patient involvement in research can significantly enhance African healthcare practices by promoting more effective, relevant, and culturally sensitive interventions. This method reflects African communities’ cultural, social, and economic realities, ensuring that findings and recommendations are viable for local implementation. Patients can contribute insights into critical health challenges, such as infectious diseases, maternal health, or non-communicable diseases like diabetes and hypertension. 

 

Involving patients in research increases their understanding of their diseases, treatment options, and the importance of adherence to medical guidance, leading to better health outcomes [4]. They can also function as advocates and educators, increasing awareness and debunking misconceptions about diseases and treatments. 

 

Research that includes patient involvement can establish treatment protocols and care practices better adapted to the local environment, promoting comfort, dignity, and patient choices [5]. Patients engaged in inclusive research are more likely to trust and engage with the healthcare system, leading to higher participation in health initiatives, better treatment adherence, and greater uptake of preventative measures [6]. 

 

Research that is co-led with patients can have a dramatic influence on policymakers. By providing data founded on the real-world experiences of persons afflicted by diseases, patient-centered research can drive the development of policies that prioritize patient needs and assist in implementing more successful health services. 

 

In conclusion, the revolutionary potential of patient involvement in research cannot be more strongly emphasized! By ensuring that healthcare practices are more relevant, culturally sensitive, and aligned with the population’s needs, this approach has the power to significantly improve the quality of care, foster greater trust in the healthcare system, and ultimately lead to better health outcomes and more resilient healthcare systems across Africa. 

 

Suggestions 

Research using patient involvement led to more meaningful socio-economic and cultural outcomes, as patients identified issues of which researchers were not previously aware [7]. When patients are involved throughout the drug development/clinical trial design process, they can inform researchers of best practices to disseminate results among the participants and greater patient community, as they can suggest appropriate communication methods to ensure comprehension [8, 9]. Similarly, patients can co-present results at conferences [10], which can increase the greater patient community’s trust in research, and potentially increase their willingness to participate in future clinical trials, or other research endeavors. 

 

Take home suggestions for researchers:  

1) Recognize the hardships and costs of long-distance travel for patients. Find ways to alleviate this by, for example, allowing patients to get tests and scans closer to home. 

2) Find ways to help patients with the incidental costs of the trial, not otherwise covered. For example, connect patients with educational resources about financial assistance programs and fundraising methods.  

3) Improve timely communication between trial staff and patients. 

4) Properly educate and inform potential study participants on the study’s required activities.  

5) Allow study participants to have access to their personal trial data and study statistics. 

6) Recognize patients as citizen scientists, as their participation is critical to research advancement, as they provide careful and specific observations. Researchers must keep in mind that patients are not just test subjects. 

7) As important as it is to get the patient to understand clinical trial requirements, researchers should also make the effort to educate the close family members of consenting patients. Offering moral support, especially in communal settings like Africa, is critical to enhance acceptance of clinical trials and research endeavors. 

 

Resources 

  1. National Institute for Health and Care Research. (n.d.). I want to help with research. [Accessed from:  https://www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/] 
  2. Arumugam, A., Phillips, L.R., Moore, A., Kumaran, S.D., Sampath, K.K., Migliorini, F., Maffulli, N., Ranganadhababu, B.N., Hegazy, F. & Botto-van Bemden, A. (2023). Patient and public involvement in research: A review of practical resources for young investigators. BMC Rheumatology, 7(2). doi: 10.1186/s41927-023-00327-w 
  3. Anderson, A., Borfitz, D., & Getz, K. (2018). Global public attitudes about clinical research and patient experiences with clinical trials. JAMA Network Open, 1(6), e182969-e182969. doi: 10.1001/jamanetworkopen.2018.2969 
  4. Shea, L., Pesa, J., Geonnotti, G., Powell, V., Kahn, C., & Peters, W. (2022). Improving diversity in study participation: Patient perspectives on barriers, racial differences and the role of communities. Health Expectations. 25(4):1979-87. doi: 10.1111/hex.13554 
  5. Wind, A., van der Linden, C., Hartman, E., Siesling, S., & van Harten, W. (2022). Patient involvement in clinical pathway development, implementation and evaluation–A scoping review of international literature. Patient education and counseling. 105(6):1441-8. DOI: 10.1016/j.pec.2021.10.007 
  6. Mulqueeny, D.M. & Taylor, M. (2022). Patient-centred care: Reality or rhetoric—patients’ experiences at ARV clinics located in public hospitals in KwaZulu-Natal, South Africa. AIDS research and therapy. 9(1):41. DOI: 10.1186/s12981-022-00463-2 
  7. Shen, S., Doyle-Thomas, K. A. R., Beesley, L., Karmali, A., Williams, L., Tanel, N., & McPherson, A. C. (2017). How and why should we engage parents as co-researchers in health research? A scoping review of current practices. Health Expectations: An international Journal of Public Participation in Health Care and Health Policy, 20(4), 543–554. https://doi.org/10.1111/hex.12490  
  8. Beier, K., Schweda, M. & Schicktanz, S. (2019). Taking patient involvement seriously: A critical ethical analysis of participatory approaches in data-intensive medical research. BMC Medical Informatics and Decision Making, 19(90). doi: 10.1186/s12911-019-0799-7 
  9. Maccarthy, J., Guerin, S., Wilson, A.G. & Dorris, E.R. (2019). Facilitating public and patient involvement in basic and preclinical health research. PLoS One, 14(5): e0216600. doi: 10.1371/journal.pone.0216600 
  10. Jackson, T., Pinnock, H., Liew, S.M., Horne, E., Ehrlich, E., Fulton, O., Worth, A., Sheikh, A. & De Simoni, A. (2020). Patient and public involvement in research: From tokenistic box ticking to valued team members. BMC Medicine, 18(79). doi: 10.1186/s12916-020-01544-7 

HBV, HDV, Hepatitis B Awareness, Hepatitis Delta (HDV), Liver, Living with Hepatitis B

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/ 

Baruch S. Blumberg Institute