Hep B Blog

Monthly Archives: January 2024

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

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

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

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

Can you introduce yourself and your organization? 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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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:

Baruch S. Blumberg Institute