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Storyteller Insights: Cosmin’s Story

My name is Cosmin, and I was born in Romania. When I was just one year old, I was diagnosed with hepatitis B. At the time of my diagnosis, I showed no symptoms of the virus. There was no history of hepatitis B in my family, and my mother had not been exposed to the virus. Moreover, I have a sister who, like me, was unvaccinated for hepatitis B, and despite our childhood wrestling matches, she was never exposed to hepatitis B. Due to my diagnosis, I had frequent visits to the hospital during my childhood, for regular medical check-ups. My parents made every effort to seek treatment at the major medical centers available at the time.  

Unfortunately, the atmosphere in Romanian hospitals after the revolution was not very welcoming, especially for a child. I’ll admit that fear nestled deep within my young heart, but my parents, like guardian angels, surrounded me with their unwavering protection. They whispered soothing words of assurance, promising me that everything would be all right. However, the enigma of hepatitis B remained shrouded in silence during those days, leaving my young mind with persisting questions. I believed my parents with all my heart when they told me I would be okay, but the puzzle of our frequent hospital visits still perplexed me. Why, I wondered, did we keep returning to those sterile corridors if everything truly was fine? The answers remained hidden beneath their loving care, and I clung to their promises, finding consolation in their presence, even as the mysteries of life unraveled with time.  

In the shadowy recesses of my past, there lies a time I seldom revisit. My mother was the one who often accompanied me to the hospital because my father had to work. Our hospital visits in the capital demanded financial resources, highlighting the challenges we faced. As a child, I grew up with the routine of frequent hospital visits, where they regularly took my blood. It felt like a recurring obligation, similar to visiting a distant and unfamiliar relative, but one I had to embrace. My parents, too, sought solace in uncharted waters. They explored every avenue, from natural remedies to unorthodox methods, driven by a love that knew no bounds. I found myself in a two-year treatment with interferon. At that point, the relentless cycle of medical tests had left me exhausted, and the idea of undergoing liver biopsies filled me with dread. Deep inside, I yearned to remain as I was, feeling as though they were slowly claiming every part of me, piece by piece, while I longed for nothing more than some moments of peace. I have some blurry memories of that time. One year, it demanded three injections per week, and the next, two. Maybe my mind protected me by hiding some of the memories. 

Amidst the haze of those Interferon days, there is one memory that refuses to fade—the memory of my liver biopsies. In a time when bravery was my silent ally, I mustered the courage to face those procedures without revealing the fear that coursed through me. During my first liver biopsy, I wasn’t fully anesthetized when they brought me into the operating room, leaving me incredibly vulnerable. After the procedure, I found myself rushing to get up, eager to demonstrate my resilience, but regrettably, this impulsiveness resulted in subsequent admission to intensive care. 

 

Adverse childhood experiences, including medical interventions such as three liver biopsies in my case, can deeply affect a child, leaving enduring effects that extend far beyond the actual events. These circumstances can ignite a sense of heightened vigilance, as these patterns tend to resurface in different life situations. This ongoing state of hypervigilance becomes a means of staying prepared for the possibility of similar challenges in the future. From a tender age, my path was shaped by experiences that left indelible marks on my heart. It wasn’t a childhood like others, filled with carefree days. Instead, it was a period marked by endless medical procedures and tests that sought to reclaim my health. As a child, my deepest desire was simply to experience a childhood unburdened by the weight of medical interventions. Considering these personal aspects, I’ve held a deep desire to work in this field since my childhood. After all those challenging experiences, my test results improved, allowing me to finally escape the frequent hospital visits and unpleasant procedures. 

Yet, as one chapter closed, another unfolded. Not long after my own medical journey, my mother began to confront her own health challenges. The journey of my mother took a challenging turn after a surgery that left her grappling with long-term issues. Antibiotic-resistant infections became unwelcome companions on her path, and they ushered in a series of surgeries that stretched across two decades—more than one hundred procedures in total. These infections were presented as recurring pus collections, necessitating surgical intervention. I remember those countless moments when I anxiously waited for my mother to awaken from anesthesia, my heart heavy with worry. 

The dream of attending medical school burned with me for years, but I gave up at the last moment, especially due to my mother’s health. I opted for a shorter program in dental technology. In an effort to be near my family, I temporarily shelved my ambitions. 

Amid life’s unpredictable twists, fate has gracefully choreographed wonder moments for my soul. Along this magical journey, I encountered my future wife, a captivating soul whose heart brimmed with boundless kindness. Her presence not only brought love into my life but also offered unwavering support and endless affection, filling my days with a profound sense of meaning, romance, and wonder. From this magical love story, our precious girl comes into our lives. Initially, I felt content and excited with my work, but deep down, it was more of a compulsion, and subconsciously, I realized it wasn’t what I truly wanted. In addition to my mother’s health issues, I faced a tried period while undergoing medical tests for hepatitis B and later for hepatitis Delta, receiving results that didn’t provide the reassurance I had hoped for. 

Shortly thereafter, I embarked on another chapter in my medical journey, another two years of Interferon treatment. Those were arduous times, marked by physical and emotional trials. Through it all, my wife remained my unwavering pillar of strength. Her support was a beacon of light in the darkness that seemed to loom. During that time, our sweet girl was quite young, and I am certain it must have been a challenging time for my wife. Sincerely, the weight of the situation often overwhelmed me. 

 

Behind the backdrop of these challenging events, my mother remained a beacon of optimism. Despite her health problems and the relentless complications that plagued her, she carried herself with unwavering hope. Sadly, at the tender age of 49, my mother left this world, leaving me with a plethora of unanswered questions. This sad moment with my mother happened a few months after I completed interferon treatment. 

In the aftermath of those challenging times, a dormant dream from my childhood began to stir within me. I summoned the courage to reconnect with the aspirations that had been shelved for so long. It was a journey into the depths of my own emotions, and it led me to a profound realization. I decided to embark on a path that related to my heart—a journey into the field of hepatitis B. It was a choice fueled by empathy, born from my own trials and the desire to make a meaningful impact in the lives of others facing similar struggles. In this newfound purpose, I unearthed not just my cherished childhood dream but also a profound calling. It’s a path that allows me to pay tribute to my past and to perpetuate the strength and empathy that have been the pillars of my personal journey. 

In 2019, I made the decision to launch an initiative, driven by my desire to share a part of the story I have shared above. It was essential for me to be transparent about my intentions and the specific things I mentioned, as my primary goal was to provide support to people with hepatitis B. As a result, I had the honor of connecting with numerous people with hepatitis B worldwide and with dedicated professionals in the field. 

My open-mindedness, curiosity, and unconventional approach were valuable assets, as they led me to encounter my mentors, Carol Brosgart, Robert Gish, and Francesco Negro. I feel profoundly fortunate to have had these esteemed professors in my life, as their inspiration and guidance played a pivotal role in my relentless pursuit of answers to my research questions. This field unquestionably demands unwavering self-belief to navigate successfully and being connected with my mentors enabled me to give my best as a research scientist. Having carried the knowledge that my mother remained unexposed to hepatitis B throughout my upbringing holds profound importance in the context of my project. All information turns into data, and some of the data becomes immunological and knowledge features for me. Given the challenges I’ve faced, I take immense pride in my project, considering it a significant achievement regardless of how its outcomes are judged. I made the conscious decision to share my personal dataset publicly because my primary objective revolves around comprehending specific facets of these infections in newborns, with the goal of preventing their occurrence.  

This story is not easy for me to write, but I’ve made the choice to share it, nonetheless. In my journey, I’ve to embrace my own flaws and imperfections, recognizing that they are threads of my humanity. Through this acceptance, I have the strength to learn from my experiences, and with each lesson, I strive to craft a more refined version of myself. 

I would like sincerely to express my heartfelt gratitude to my beloved wife, Irina, my cherished family, my wise mentors, and all the wonderful individuals who wholeheartedly supported me throughout this project. I am deeply thankful to the Hepatitis B Foundation for their invaluable support on this journey. I am also appreciative of the courage shown by both myself and my dear mother in facing these challenging experiences and for providing medical data. 

At the heart of this narrative, there was a fervent wish that certain aspects of these infections would become better understood. Anyone who might have the misfortune to be exposed to hepatitis B deserves respect and compassion. Behind all the values in hepatitis B tests, there are emotions. Every person affected by hepatitis B needs more- than just medical data: they need information that can empower them to face their journey with resilience and hope. 

 

A collection of photographs shared by Cosmin:

New Phase 3 Clinical Trial Opportunity for People Living with Chronic Hepatitis B

 

 

 

 

 

As you know, clinical trials play an important role in the development and approval of treatments for hepatitis B. Clinical trials can tell how well new medicines work in people and can compare new medicines with current treatment options. Clinical trials provide a great opportunity to help advance hepatitis B research and give people with hepatitis B access to new treatments!  

There are new phase 3 clinical trials starting for people living with chronic hepatitis B infection. GlaxoSmithKline (GSK) is launching two new phase 3 clinical trials called B Well-1 and B Well-2, which will test an experimental drug, bepirovirsen, as a potential treatment for hepatitis B.  

Bepirovirsen, which has not yet been approved for treatment, is designed to stop the hepatitis B virus from making substances that may prevent a person’s immune system from fighting the virus. This can potentially allow the body to gain control over the infection.  

Researchers are hopeful that bepirovirsen may be more effective than current treatment options and may lead to results that continue after treatment ends. Phase 2 clinical trial results showed that treatment with bepirovirsen reduced HBsAg and hepatitis B virus (HBV) DNA after 24 weeks of treatment in people with chronic hepatitis B. 

In the B Well phase 3 studies, participants will be randomized into different study groups. Some people will receive bepirovirsen, and some people will receive a placebo. All people will remain on their nucleoside/nucleotide analogue (NA, such as tenofovir or entecavir) treatment. The studies are designed to see if combination treatment with bepirovirsen and an NA results in greater reduction of HBsAg and HBV DNA – and to see if this reduction is sustained after treatment ends. People in the study have a 2 in 3 chance of receiving bepirovirsen and a 1 in 3 chance of receiving placebo. The entire study lasts 78-102 weeks. Participants will not know whether they are receiving bepirovirsen or placebo, and neither will the doctor (until after the study ends). Participants will have medical visits throughout the study, where the doctor will check on hepatitis B viral activity and each participant’s overall health. 

To participate in the new phase 3 B Well studies, people need to be at least 18 years old (although the minimum age requirement may be higher in some countries); have a documented hepatitis B infection for at least six months; and have been on antiviral therapy with an NA for at least 6 months.  

The B Well study is being run in many countries, so there is opportunity for people in many areas of the world to participate! To find out more information and see if you might be eligible, please visit www.bwellstudy.com 

 

Hepatitis B and Injection Drug Use: Risks, Barriers to Care, and Prevention Strategies

 

 

 

 

 

 

 

 

 

Hepatitis B is a liver infection which is caused by the hepatitis B Virus (HBV). Hepatitis B is transmitted from person to person through blood, semen, or other bodily fluids. You can learn more about the ways hepatitis B is spread here. People who inject drugs (PWID) are at high risk for contracting the virus due to the sharing of needles and low  awareness and education about hepatitis B.

HBV Prevalence among PWID Communities

People who inject drugs (PWID) are at high risk for hepatitis B virus infection due to various factors, including sharing injection equipment and lack of awareness about hepatitis B transmission. Using unclean needles to inject drugs can result in the exchange of blood. This increases a person’s risk of being exposed to the virus. Hepatitis B prevalence among PWID is much higher than in the general population. Chronic HBV infection has been identified in 3.5% to 20.0% of PWID in a variety of settings, and 22.6% of PWID have evidence of past infection (Haber & Schillie, 2021). Drug injection is the most common risk for persons ages 18-40 years old with hepatitis B virus. 

Barriers to Care for PWID Communities

Access to treatment can be a significant barrier for PWID, who may face stigma and discrimination in healthcare settings. To find out if someone has hepatitis B it is recommended that a triple panel hepatitis B test be run (which includes HBsAg, HBcAb and HBsAb). These tests will help identify people with hepatitis B, a previous exposure to hepatitis B and those who have protection against hepatitis B infection (through vaccination). For those with hepatitis B, treatment options for hepatitis B consist of antiviral medications that can help to control the virus and reduce the risk of serious liver damage, cirrhosis, and liver cancer. Treatment is taken daily for life generally. PWID lack access to these treatments due to the stigma attached with substance use and addiction. Some of these stigmas include being associated with dangerous, unpredictable, and lacking self-control (NIH, 2019). In a recent study, 88% of individuals from PWID have experienced some type of stigma from the healthcare system (NIH, 2019).  Some of these stigmas included being poorly treated in healthcare facilities while interacting with nurses, security guards, and other medical providers. Due to these biases, people often refuse to seek health care services to avoid mistreatment. Stigma is the top barrier for PWID communities worldwide (Biancarelli et al, 2019). Even though the cost of treatment may be a barrier for some people, there are resources to find affordable options. Learn more about accessing medication here

Prevention Strategies

One effective prevention strategy to combat the spread of hepatitis B among PWID is to use clean injection equipment, like needles, works, and syringes. This will reduce the likelihood of transmission. New services have been introduced in cities like Philadelphia to decrease the rate of sharing needles. Prevention Point Philadelphia for example is a nonprofit public health organization that works to provide comprehensive harm reduction services to Philadelphia and surrounding areas. The syringe service program specifically allows used syringes to be exchanged for clean ones. With these services, the need to share needles can decline, which then can help decrease the risk of hepatitis B and other infectious diseases being spread in the community. Needle and syringe programs also provide other social and health services, such as counseling,  hepatitis testing, and referral to drug treatment for example.

Another way to prevent hepatitis B in PWID is through education and outreach efforts to help raise awareness about the risks of transmission and how to reduce those risks. This will also encourage safer injection practices to reduce the risk of transmission through blood contact. Other recommendations for prevention of hepatitis B among people who inject drugs is to offer vaccinations for PWID communities. The hepatitis B vaccine is safe and effective and recommended for all adults in the US between the ages of 18-59 and above 59 with risk factors. Testing is another great way to help the community- to identify infection and encourage prevention through vaccination ultimately preventing liver cancer in the long run. Offering people who inject drugs incentives to increase uptake and complete the vaccination schedule is also a way to prevent hepatitis B in PWID (WHO, 2023).  The United States has set a goal to decrease the number of cases of hepatitis B in the PWID community. The National Progress Report goal is to reduce the rate of new hepatitis B virus infections among people who inject drugs by more than 25% by 2025 (CDC, 2020). 

 

To learn more about the resources provided by Prevention Point, click here.

 

References:

World Health Organization. (2022, June 24). Hepatitis B. World Health Organization. Retrieved March 15, 2023, from https://www.who.int/news-room/fact-sheets/detail/hepatitis-b

World Health Organization. (2015, March). Guidelines for the prevention, care and treatment of persons with chronic hepatitis B infection. World Health Organization. Retrieved March 15, 2023, from https://www.who.int/publications/i/item/9789241549059

Centers for Disease Control and Prevention. (2020, August 11). NP report 2025 goal: Reduced HBV rate among PWID. Centers for Disease Control and Prevention. Retrieved March 15, 2023, from https://www.cdc.gov/hepatitis/policy/NPR/2020/NationalProgressReport-HepB-ReduceInfectionsPWID.htm

Biancarelli DL, Biello KB, Childs E, Drainoni M, Salhaney P, Edeza A, Mimiaga MJ, Saitz R, Bazzi AR. Strategies used by people who inject drugs to avoid stigma in healthcare settings. Drug Alcohol Depend. 2019 May 1;198:80-86. doi: 10.1016/j.drugalcdep.2019.01.037. Epub 2019 Mar 8. PMID: 30884432; PMCID: PMC6521691.

Haber, P., & Schillie, S. (2021, August 18). Pinkbook: Hepatitis B. Centers for Disease Control and Prevention. Retrieved March 24, 2023, from https://www.cdc.gov/vaccines/pubs/pinkbook/hepb.html 

Centers for Disease Control and Prevention. (2023, March 17). QuickStats: Age-adjusted drug overdose death rates, by state – National Vital Statistics System, United States, 2021. Centers for Disease Control and Prevention. Retrieved March 19, 2023, from https://www.cdc.gov/mmwr/volumes/72/wr/mm7211a7.htm?s_cid=mm7211a7_e&ACSTrackingID=USCDC_921-DM101471&ACSTrackingLabel=This+Week+in+MMWR+-+Vol.+72%2C+March+17%2C+2023&deliveryName=USCDC_921-DM101471

Board of Health, Department of Public Health. (2022, October 26). Health Department releases data on 2021 overdose deaths in Philadelphia: Department of Public Health. City of Philadelphia. Retrieved March 20, 2023, from https://www.phila.gov/2022-10-26-health-department-releases-data-on-2021-overdose-deaths-in-philadelphia/

Provide Feedback for the Hepatitis B Foundation’s Blog!

 

 

 

 

 

 

 

 

 

Hello Readers!

The Hepatitis B Foundation Blog is an important source of information for people living with hepatitis B, public health advocates and partners, and the general public. This is why it’s so important to keep our blog relevant and up-to-date with everything hepatitis B related! In an effort to improve our work, we are conducting a short survey to hear from you and create content that matters to you.

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Living with hepatitis B and Diabetes

 

 

 

 

 

 

 

 

 

Happy Diabetes Awareness Month 

November is American Diabetes Awareness Month! The Hepatitis B Foundation invited Dr. Tatyana Kushner, Theresa Worthington, and Marcia Mukanga Lange from Icahn School of Medicine at Mount Sinai to explain more about the relationship between hepatitis B and Diabetes. 

Diabetes and hepatitis B are linked in ways that are important for patients and healthcare professionals to be aware of in order to improve outcomes in patients with chronic hepatitis B. The great news is that through healthy lifestyle changes, patients with chronic hepatitis B and diabetes can take ownership of their health and manage their diabetes.  

Hepatitis B May Increase One’s Risk for Diabetes 

While still controversial, some studies indicate that patients with chronic hepatitis B, and particularly cirrhotic (liver scarring) hepatitis B, are at a greater risk for developing type II diabetes. Type II diabetes is a medical condition in which the body is unable to use glucose (blood sugar) for energy. The liver is a key metabolic organ with a host of necessary functions, one of which is blood sugar regulation. The liver helps keep glucose levels normal in the bloodstream to prevent serious health issues. It is not clearly understood how hepatitis B increases one’s risk for diabetes, but research has shown that damaged liver cells could lead to abnormalities in blood sugar regulation.  Liver damage as a result of hepatitis B can promote the development of diabetes without effective management to prevent further complications. 

It is also important to know that having diabetes can put a person at risk for hepatitis B due to frequent use of glucose monitoring devices. People with diabetes must regularly monitor and track their blood sugar or glucose levels by pricking their finger using a glucose meter/monitoring machine. Failure to clean the equipment properly or sharing the glucose monitor with others can result in the spread of hepatitis B. Therefore, people with diabetes should make sure they are vaccinated against hepatitis B to reduce the risk of transmission.  

Hepatitis B Increases Risk of Gestational Diabetes (being diagnosed with diabetes for the duration of the pregnancy)  

Research has also pointed to an increased risk of developing gestational diabetes in pregnant patients with chronic hepatitis B, likely also due to damaged liver cells. Gestational diabetes is distinct from type I or type II diabetes in that it is diagnosed specifically during pregnancy. The cause of gestational diabetes is unknown but likely related to the hormonal changes that occur during pregnancy. Being overweight or having pre-diabetes are two well known risk factors, aside from chronic hepatitis B, that increase a patient’s risk for developing gestational diabetes. Gestational diabetes is associated with harmful outcomes for the mother and baby, especially if not well controlled during pregnancy. These may include: 

  1. High blood pressure during pregnancy 
  2. Premature birth associated with breathing problems 
  3. Complications during delivery (giving birth to a child weighing nine pounds or more) 
  4. Developing type II diabetes later in life 

Hepatitis B and Diabetes Comorbidity (being diagnosed with multiple conditions at the same time) Increases Risk for Cirrhosis and Liver Cancer  

Chronic hepatitis B patients with diabetes are also at a greater risk for a more rapid progression of liver disease, including progression to cirrhosis, a condition where the liver is scarred and becomes permanently damaged.  

Moreover, chronic hepatitis B and diabetes are known risk factors for hepatocellular carcinoma, a type of liver cancer. When a patient has both hepatitis B and diabetes, the risk of hepatocellular carcinoma is even greater, likely due to liver inflammation as a result of insulin resistance (a condition in which the body cannot break down sugar for energy). However, this risk can be reduced with proper blood sugar control. Interestingly, treating patients who have both diabetes and chronic hepatitis B with metformin, a diabetes medication that improves blood sugar levels, decreased the incidence of liver cancer to a greater degree than treating patients with insulin directly. Thus, both cautious and appropriate management of diabetes in HBV patients is critical.   

Other Metabolic Risk Factors 

Other metabolic-related risk factors for liver disease and liver cancer exist including nonalcoholic fatty liver disease (NAFLD). NAFLD is a liver condition associated with an accumulation of excess fat on the liver that is not caused by alcohol consumption. Common risk factors for NAFLD include type II diabetes and obesity. As vaccination rates and treatments for hepatitis B continue to improve, NAFLD is quickly becoming the leading cause of liver disease, liver cancer, and liver transplantation in the United States. Patients living with both NAFLD and HBV are more likely to have their liver disease rapidly progress. Thus, providers should counsel patients with chronic hepatitis B, with or without diabetes, to manage their weight through healthy eating and physical activity. For those with diabetes, optimizing control of blood sugar levels in order to improve both overall and liver-specific health is also key.  

References  

Cheuk-Fung Yip T, Wai-Sun Wong V, Lik-Yuen Chan H, Tse YK, Pik-Shan Kong A, Long-Yan Lam K, Chung-Yan Lui G, Lai-Hung Wong G. Effects of Diabetes and Glycemic Control on Risk of Hepatocellular Carcinoma After Seroclearance of Hepatitis B Surface Antigen. Clin Gastroenterol Hepatol. 2018 May;16(5):765-773.e2. doi: 10.1016/j.cgh.2017.12.009. Epub 2017 Dec 12. PMID: 29246694.  

Lei S, Chen S, Zhao X, Zhang Y, Cheng K, Zhang X, Wang Z, Sun Y, Wu S, Wang L. Hepatitis B virus infection and diabetes mellitus: the Kailuan prospective cohort study in China. Hepatol Int. 2020 Sep;14(5):743-753. doi: 10.1007/s12072-020-10086-2. Epub 2020 Sep 3. PMID: 32885367.  

Liu Y, Ye S, Xiao X, Zhou T, Yang S, Wang G, Sun C, Zhang B, Wang G. Association of diabetes mellitus with hepatitis B and hepatitis C virus infection: evidence from an epidemiological study. Infect Drug Resist. 2019 Sep 12;12:2875-2883. doi: 10.2147/IDR.S218536. PMID: 31686868; PMCID: PMC6751765.  

Tacke F, Weiskirchen R. Non-alcoholic fatty liver disease (NAFLD)/non-alcoholic steatohepatitis (NASH)-related liver fibrosis: mechanisms, treatment and prevention. Ann Transl Med. 2021 Apr;9(8):729. doi: 10.21037/atm-20-4354. PMID: 33987427; PMCID: PMC8106094.  

Tan Y, Wei S, Zhang W, Yang J, Yang J, Yan L. Type 2 diabetes mellitus increases the risk of hepatocellular carcinoma in subjects with chronic hepatitis B virus infection: a meta-analysis and systematic review. Cancer Manag Res. 2019 Jan 14;11:705-713. doi: 10.2147/CMAR.S188238. PMID: 30679924; PMCID: PMC6338123.  

Xu C, Chen J, Zhang PA. Relationship Between Diabetes Mellitus and Cirrhosis Risk in Chronic Hepatitis B Patients in Wuhan, China. Med Sci Monit. 2019 Oct 29;25:8112-8119. doi: 10.12659/MSM.917000. PMID: 31661471; PMCID: PMC6839395.  

Zhang, J., Shen, Y., Cai, H., Liu, Y.-M., and Qin, G. (2015) Hepatitis B virus infection status and risk of type 2 diabetes mellitus: A meta-analysis. Hepatol Res, 45: 1100– 1109. doi: 10.1111/hepr.12481.  

https://www.cdc.gov/diabetes/basics/gestational.html 

https://www.cdc.gov/hepatitis/populations/diabetes.htm 

 

Liver Cancer Screening Q&A with Dr. Amit Singal

Did you know that chronic infection with hepatitis B is the leading cause of liver cancer? 

For this month’s blog we talk to an expert in liver cancer, Dr. Amit Singal. Dr. Singal is a medical researcher and professor at the UT Southwestern Medical Center with extensive experience in digestive and liver diseases. Join us as we interview Dr. Singal about the importance of liver cancer screening as a preventive tool to improve health for people who may be at risk for hepatitis B or liver cancer.  

Question: What puts someone at risk for liver cancer or hepatocellular carcinoma (HCC)? 

There are several risk factors for liver cancer including obesity, being male, and older age; however, the biggest risk factor is the presence of advanced chronic liver disease (having cirrhosis for example). Most people who develop hepatocellular carcinoma (the most common type of liver cancer) do so after having cirrhosis (scarring of the liver). However, it is important to know that there is a small number of people with hepatitis B (about 10%) that can develop liver cancer or hepatocellular carcinoma without having cirrhosis.  

Question: Should a person with hepatitis B get screened for liver cancer? 

Chronic hepatitis B is a risk factor for HCC; but we do know that some patients are at higher risk than others for liver cancer. Most screening recommendations are based on demographics (like age and sex) and clinical characteristics (like how a person got hepatitis B and presence of other risk factors). We now have started to move to using a clinical risk calculator that incorporates these factors, such as the PAGE-B score (which is based on platelet count, age, and gender). A platelet count refers to the number of platelets or cells that help your blood clot. It is used in blood tests to detect any problems with your blood flow or diagnose any serious illnesses like cancer. You can learn more about the clinical risk calculators for liver cancer here.  

Question: Can liver cancer be detected at an early stage? 

Yes, liver cancer can be found at an early stage if patients undergo regular liver cancer screening. Liver cancer screening should be performed using abdominal ultrasound and a blood test, alpha fetoprotein (AFP), every 6 months. AFP is a protein found in the liver. Very high levels of AFP may indicate cancer. These tools are available, non-invasive (does not require the use of any tools to cut through the skin or enter the body) and can detect most liver cancers at an early stage. This is very important since we have cures available if liver cancer is found at an early stage, with average survival over 10 years in the United States for example. Unfortunately, patients where liver cancer is found at later stages do not typically have curative therapies available and have an average survival of only 2-3 years. Therefore, regular liver cancer screening, especially with hepatitis B, is so important.  

Question: Does an individual need to display symptoms before getting screened for liver cancer?  

We do not want to wait until patients have symptoms. Liver cancer can be silent and asymptomatic (without symptoms) for several months and is almost always silent at an early stage. Once people do have symptoms, patients typically have large tumors, and it is too late for curative liver cancer treatments.    

Question: What is the process of liver cancer screening like? What tests are used to screen for liver cancer? 

Screening should be performed using abdominal ultrasound and a blood test, alpha fetoprotein, every 6 months. These tools are available, non-invasive, and can detect most liver cancers at an early stage. If either test is positive or abnormal, then patients typically undergo confirmatory diagnostic testing with multi-phasic computerized tomography (CT) scan (a combination of x-ray scans that looks at changes insides your body) or contrast-enhanced MRI (a machine that produces pictures of organs in the body). 

Question: Are there any risks involved in liver cancer screening?  

Abdominal ultrasound and AFP are safe and non-invasive, so the risks of liver cancer screening are relatively low. However, there is a risk of false positive results, which means that someone tests positive when they are not positive for liver cancer. This can result in additional diagnostic testing and patient anxiety. Current research shows that these risks are uncommon, and the benefits of HCC screening far outweigh the associated risks.    

 

Our thanks to Dr. Singal for providing this life-saving information. Liver cancer may be silent, but people living with hepatitis B must be loud when telling their doctors that they need to be screened! 

If you have recently been diagnosed with hepatitis B or want to learn more about liver health, check out the Hepatitis B Foundation’s Information Guide here.  

“Photo from UT Southwestern.”

May Hepatitis Awareness Month #justBLoud

Hepatitis Awareness Month #JustBLoud blog

This May, for Hepatitis Awareness Month, we are asking you to #justBLoud for hepatitis B. Currently up to 2.4 million living in the U.S. have chronic hepatitis B, yet no one seems to be talking about it. The average American is unaware about hepatitis B and why our country needs to put more energy into prevention and finding a cure. The louder we are, the more we can help people get screened, vaccinated or treated for this serious disease.

You can start getting loud the Hepatitis Awareness Month by making a short video explaining why it’s important for you to #justBLoud about hepatitis B. It can be a personal story or you can take the text right from the below bulleted points.  Be sure make the post public and tag #justBLoud and tag HepBFoundation. You can even make quick Instagram and Facebook stories using the #justBLoud stickers we created, just search “justbloud” in the stickers menu. If you’re camera shy, write down your reason for being loud and share a photo of it online.

Talking points for your message may include:

  • #JustBLoud about prevention: Hepatitis B is easily prevented with a safe vaccine.
  • #JustBLoud about transmission: Hepatitis B is transmitted through direct contact with infected blood, not casual contact. Hug someone with hepatitis B today.
  • #JustBLoud about screening: In the U.S. only 25% of people with hepatitis B are aware that they have hepatitis B. Get screened today.
  • #JustBLoud about treatment: Only 50% of people with diagnosed chronic hepatitis B in the U.S. receive appropriate medical care.
  • #JustBLoud about giving: Donating to the Hepatitis B Foundation makes a big impact for people living with hepatitis B. It affects advocacy efforts as well as research to find a cure!

Other easy ways to just B Loud this Hepatitis Awareness Month:

  • Share our social media posts this month to help spread the word. Make sure to follow us on Facebook, Instagram, Twitter, LinkedIn, and YouTube.
  • Use one of these as your zoom background to get the conversation started: justBLoud zoom background justBLoud zoom background with microphone
  • Join our Action Center for Hep B United here.

Whatever you do this month, don’t be quiet! We need to spread the word about hepatitis B to help people living with hepatitis B whether they know it or not and those who are unvaccinated. Thank you in advance for participating.


Please note: If you don’t want to participate because you fear discrimination please contact us privately here.

Year of the Tiger – Strength During a New Hepatitis B Diagnosis

Happy Lunar New Year! This year is the Year of the Tiger. The Tiger is a symbol of strength and bravery. Let’s go into this Lunar New Year with strength and bravery. When we are first diagnosed with a health condition, it just does not affect us physically, but mentally and emotionally. Many of us experience fear, anger, sadness, depression, anxiety, and powerlessness. Being diagnosed with hepatitis B can be scary – you might not feel strong or brave, and that is okay! The great news is that you can live a long and healthy life with hepatitis B.

Anger is a natural emotion we might experience when we are first diagnosis with hepatitis B. You might ask yourself: how did this happen to me, and why did this happen to me? It is normal to feel this way, you just got unexpected news. You might feel anger or hostility to our parents or lovers who also did not know they had the virus and passed it on to us. Talk about your anger and frustrations with a close friend or a professional counselor. You can also use healthy coping mechanisms like exercising or meditation. After we process our anger, it is important to inform close contacts (sexual partners, people who live in the same household) of your hepatitis B status so they can get tested, and vaccinated if necessary.

Sometimes this anger can turn into sadness. Prolonged sadness is also a natural emotion you can experience when you find out you are newly with hepatitis B. If you feel this prolonged sadness, anxiety, or fear, or sleeplessness, it is time to talk to someone who can help. Our fears and anxieties can sometimes overwhelm us because we do not know what is going to happen next, but know you have a support system. If you need support, you can join Hep B Community. This online group is a global peer-led, volunteer-driven forum to support to those living with and affected by hepatitis B. They are dedicated to connecting people affected by hepatitis B with each other and with verified experts in the field, who provide trustworthy and accurate advice.

Your doctor may recommend treatment after interpreting your hepatitis B test results. The great news is that hepatitis B can be successfully managed through treatment and living a healthy lifestyle by exercising and eating foods that nourish our body. When you manage your hepatitis B, you can live your life to the fullest. As you process our initial reactions and emotions, know that you are strong and brave. Living with hepatitis B is part of us, but it does not define us.

If you are newly diagnosed, you can check out our pages about hepatitis B, testing, prevention, and treatment.

Direct questions to info@hepb.org

Happy World Hepatitis Day!

Every year on July 28th,  we celebrate World Hepatitis Day in honor of Dr. Baruch Blumberg’s birthday. Dr. Blumberg discovered the hepatitis B virus in 1967 and subsequently developed the hepatitis B vaccine two years later in 1969. We commemorate World Hepatitis Day by raising awareness about viral hepatitis. With almost 300 million individuals living with hepatitis B worldwide, it is so important to bring awareness to this preventable and treatable disease. This year’s World Hepatitis Day theme is “Hepatitis Can’t Wait”. The theme focuses on the fact that people with viral hepatitis need action now – to make sure they have access to testing and treatment to save their lives.

Get Involved

Here are some ways you can get involved with World Hepatitis Day!

Share on Social Media

You can get involved with the Hepatitis Can’t Wait campaign by doing 1-minute actions, 10-minute actions, or longer actions! Your actions can be as simple as sharing a post on social media or more involved like getting in contact with your policymaker to encourage viral hepatitis prioritization

Discrimination Registry

 If you are experiencing discrimination due to your hepatitis B status, consider adding your story to our discrimination registry. We are working to document discrimination related to hepatitis B. Discrimination is defined as the unjust, unfair or prejudicial treatment of a person on the grounds of their hepatitis B status. In other words, being treated differently because of one’s hepatitis B infection. For someone with hepatitis B, this can mean exclusion, denying benefits, denied employment, education, training, goods or services, or having significant burdens imposed on an individual due to their infection status.

Become an Advocate

Become a Hep B Advocate! Sign up below to receive the latest news and updates about hep B policy issues, learn about upcoming advocacy events, and be notified of opportunities to take action and show your support for our policy initiatives. We’ll provide resources, information, and tools to help you:

  • Communicate effectively with your elected officials
  • Educate and engage your community on hep B policy issues
  • Recruit and organize other hep B advocates and champions in your community
  • Promote and participate in ongoing national, state, and local advocacy efforts.

 Participate in a Clinical Trial

 Volunteering for a clinical trial program can be very valuable. Expensive blood work, treatment medications, and doctor’s visits are usually provided free of charge for those accepted into a study. Clinical trials also provide the opportunity to potentially benefit from the latest advances in medical science.

GlaxoSmithKline is launching a clinical trial, “B-Together,” to study how two drugs (GSK3228836 and Pegasys) might work together to treat chronic hepatitis B (CHB). Researchers hope to find new treatments that could be more effective and lead to positive results that last long after the treatment ends.

You may be eligible to participate in this trial if you are at least 18-years old, have been living with documented CHB for at least six months, and have also been receiving stable nucleos(t)ide treatment (not telbivudine) with no changes for at least six months prior to screening and no planned changes for the duration of the study (79 weeks). This trial is ongoing in the UK, Spain, Russia, Poland, Italy, Korea, Japan, China, the U.S., Canada and South Africa.

Learn more and check your eligibility to participate.

 ​Listen and Learn

Listen to our podcast: B Heppy! This podcast is part of our 300 Million Reasons campaign, a movement to improve awareness about hepatitis B and liver cancer worldwide, to promote engagement of key stakeholders, and to empower people impacted by hepatitis B to become vocal advocates. There are almost 300 million people around the world living with chronic hepatitis B infection, and we want to make sure each and every voice is heard.

Below are the episodes you can listen to, and stay tuned for more episodes about hepatitis B!

  • COVID-19 and Hepatitis B
  • The History of the Hepatitis B Foundation and Hep B 101
  • All of Us – Research Program
  • The Patient Perspective with Bright
  • Patient Resilience

 

Author: Evangeline Wang

Contact Information: info@hepb.org

 

 

Lunar New Year and Hepatitis B

February 12th marks the start of Lunar New Year and it’s the Year of the Ox!  The ox represents hard work, diligence, and honesty.

Sometimes it is so easy to get wrapped up in being diligent at work and neglect your health! If you have not been tested for hepatitis B, you might want to strongly consider knowing your status. If you are living with hepatitis B, be diligent with committing to a healthy lifestyle. Some healthy lifestyle tips include: see your hepatitis B doctor every 6 months to monitor the health of your liver, reduce or eliminate alcohol intake, eat unprocessed foods, avoid smoking or illicit drugs, and exercising.

If you celebrate the Lunar New Year, you might practice some traditions like cleaning your home, setting off firecrackers, watching a lion dance, exchanging red envelopes, and most importantly, a family reunion dinner. Celebrating the New Year might be difficult if you are living with hepatitis B, but you can take steps to celebrate mindfully. Here are some little suggestions for you to consider and possibly incorporate into this year’s celebration:

  • Making healthier food choices
    • Try steaming dumplings instead of frying them
    • Eat more veggie and lean meat dishes
  • Reduce or eliminate alcohol intake
    • Not drinking in a social setting can be hard when everyone else is. Some alternatives can include mocktails, non-alcoholic beers, or sparkling water.
  • In between celebrating, go outside for a little walk around the neighborhood to get some exercise.

Some people living with hepatitis B might be worried about transmitting the virus to their family members through sharing food. The good news is that you cannot transmit hepatitis B through food, water, or even sharing utensils!

If you celebrate the Lunar New Year, we wish you fortune, happiness, and health.

Author: Evangeline Wang

Contact Information: info@hepb.org