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Podcast Recap: Barriers to Liver Cancer Surveillance

 

 

 

 

 

 

 

 

 

 

 

 

 

In a recent episode on the B Heppy podcast, Dr. Neehar Parikh, a hepatologist at the University of Michigan, discussed the link between hepatitis B and liver cancer, barriers to screening for liver cancer, and screening methods for liver cancer.  

Hepatitis B and Liver Cancer 

Most people are not unaware of the link between hepatitis B and liver cancer. Hepatitis B can cause liver cancer, especially when left untreated or unmonitored. The hepatitis B virus (HBV) can cause serious damage to liver tissue and result in the growth of tumors that may become dangerous over time. This is why doctors recommend patients living with hepatitis B to continue to monitor their liver health and take treatment if necessary to prevent the progression to liver cancer. The best way to check for cancer is by screening. It is recommended to get liver cancer screening (usually through an ultrasound that looks at damaged tissue or abnormal cell growth) once every six months.  

Barriers to Liver Cancer Screening 

There are several barriers to liver cancer screening at the provider and patient levels. For providers, many times liver cancer screening is not prioritized when compared to other types of cancer screening programs. This is partially due to the limited evidence on liver cancer screening benefits (even though data exists to show that liver cancer screening is valuable, it’s not as strong as the evidence used to back up other cancer screening initiatives like colonoscopy or breast cancer screening). This makes liver cancer a less valuable option for providers to recommend to their patients. Providers are also not always following recommendations or guidelines from liver societies on hepatitis B management and liver cancer surveillance. Liver cancer screening is also not included in the United States Preventative Services Taskforce (USPSTF), which is a tool used by most providers in the U.S. to recommend preventative services to their patients.  

From the patient’s perspective, liver cancer screening is not always discussed by providers. For people living with chronic hepatitis B, many are not aware of the link between the virus and liver cancer. They are less likely to ask more questions about monitoring their liver health if the option or recommendation for screening is never brought up in a conversation with their providers. For many people who need liver cancer screening, they have limited access to care (loss to follow-up, lack of health insurance coverage, etc.). Limitations with the electronic health records (EHR) system is a challenge for patients who may find it difficult to schedule appointments (sometimes patients are not sent reminders to get ultrasounds). 

For people living with hepatitis B, liver cancer is a serious health risk. It is crucial to make sure patients are aware of the link between hepatitis B and liver cancer, the role of screening in early diagnosis and prevention of advanced tumors, and the importance of monitoring liver health as recommended by liver societies and guidelines on liver cancer surveillance.  

Listen to Dr. Parikh’s full episode on B Heppy here: https://bheppy.buzzsprout.com/1729790/14248470-barriers-to-liver-cancer-surveillance-with-dr-neehar-parikh. 

Additionally, the Hepatitis B Foundation recently launched a Learn the Link campaign to help spread information on the link between hepatitis B and liver cancer. View all about the campaign and get access to free resources here.: https://www.hepb.org/research-and-programs/liver/hbv-liver-cancer-connection/ 

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

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

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

Can you introduce yourself and your organization

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Highlighting the Relationship between Hepatitis B and Liver Cancer

Highlighting the Relationship between hepatitis B and Liver Cancer

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

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

Summary of focus group findings:

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

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

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

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

Experiences of Community Focus Group Facilitators

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

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

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

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

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

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

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

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

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

Conclusion

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

References

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

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

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

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

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

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

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

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

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

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

Hep Matters Vignettes: Waiting for a Cure.

 

 

 

 

 

 

 

 

Hep Matters: Brief vignettes focused on promoting awareness of hepatitis B and liver cancer through fictional narratives inspired by real events and experiences

 

 

The Scenario 

 

 

 

 

Amina was born and raised in Kandahar, Afghanistan. At the age of 17, she moved to the United States with her family. During a routine check-up with her primary care doctor, Amina discovered that she had hepatitis B. She had never heard of the disease and explained that she always takes care of herself. The doctor told her that hepatitis B is a virus that damages the liver, and anyone can get it unless they are vaccinated to protect against it. Amina recalled that she never received any vaccinations for hepatitis B. Her family members were also unaware of how hepatitis B gets transmitted. 

 

 

Amina asked her doctor how she could get rid of this virus. Her doctor explained to her that there is no cure for hepatitis B, but antiviral treatment options do exist. While she may not be able to completely get rid of the virus, she can help protect herself from serious conditions such as hep B related cirrhosis or liver cancer with treatment. Amina’s doctor encouraged her to get treatment to prevent any serious problems from occurring. He also mentioned that treatment for hepatitis B is safe and effective. This did not make any sense to Amina. She thought to herself that if a treatment wouldn’t cure her of the disease, then there is no point in taking it. She felt healthy and did not show any symptoms. After the doctor suggested treatment options, she said that she will wait for the cure.

 

 

After moving to the U.S., Amina had gotten busy with school and work and did not follow up with her primary care doctor for years. Amina experienced stomach pains from time to time but they often went away on their own. On one occasion, her stomach pain worsened. She had to take a few days off from work to get better using home remedies, but they didn’t help. Finally, she went to the doctor’s office to learn more. She discovered that she had liver cancer. Her doctor referred her to a hepatologist (a liver specialist) for further treatment.  

 

 

 

The hepatologist explained to Amina that hepatitis B can lead to liver cancer without monitoring and treatment. Even though a cure is not available, treatment options do exist, and they help in slowing and preventing serious liver disease, liver damage or liver cancer. If Amina had started antiviral treatment on time, she could have saved her liver. The doctor recommended chemotherapy for Amina to treat the cancer. Not only did her medical bills go up but Amina felt physically and mentally exhausted by the procedures. She advocates for everyone living with hepatitis B to get treatment if they need it and not wait for the cure. She also participates in advocacy efforts to make treatment options more affordable for people living with hepatitis B. 

 

 

The Challenge: 

Lack of awareness: 

Amina and her family had little knowledge about hepatitis B before her diagnosis.  They were not vaccinated, which put them at an increased risk of getting hepatitis B. Even after her diagnosis, Amina did not take the time to fully understand her diagnosis, what lifestyle she needs to follow, or available treatment options. Not knowing enough about one’s hepatitis B diagnosis can put people at risk for more serious problems in the future such as liver cancer.  

Barriers to treatment 

After her doctor went over the treatment options, Amina decided to wait for a cure. While it is not clear if financial reasons played a role in her decision to not get treatment, the cost of treatment is certainly an important factor when considering treatment options for many people. Not having insurance coverage, high out-of-pocket costs, and side effects from medication can be barriers to getting treatment for hepatitis B.  

Difference between the cure and the current treatment for hepatitis B 

Instead of getting treatment, Amina decided to wait until a cure is available for hepatitis B. It is very important to understand the difference between treatment for hepatitis B and a potential cure. While scientists are working on finding an effective cure, it is not yet available. The process of getting a new medication approved for use is very long and consists of many procedures and steps, to ensure safety and effectiveness. The available treatment for hepatitis B is very effective in preventing serious liver problems such as cancer as it can control the long-term effects of the virus on the liver. There are many different treatment options available to reduce the symptoms, help people feel better, and prevent progression of hepatitis B to advanced liver disease such as liver cancer.  

 

What Can You Do? 

Don’t wait! 

After receiving your diagnosis, the most important step is to not wait and to get connected with care immediately. Schedule an appointment with your doctor and discuss your results. Take the time to understand your diagnosis and ask important questions. Discuss treatment options. Sometimes, treatment is not needed but other times, it’s important to start treatment right away. Encourage your friends and family to get screened and vaccinated for hepatitis B.  

Find Resources! 

The Hepatitis B Foundation has excellent resources on all things related to hepatitis B knowledge, prevention, and treatment. Check out some of our resources below:  

Information about hepatitis B:  

  • https://www.hepb.org/resources-and-support/fact-sheets/ 

Community support:  

  • https://www.hepbcommunity.org/  

Medication assistance programs 

  • https://www.hepb.org/treatment-and-management/patient-assistance-programs-in-the-u-s/ 

Resources for those newly diagnosed  

  • https://www.hepb.org/prevention-and-diagnosis/newly-diagnosed/ 

Hepatitis B research institute 

  • https://www.blumberginstitute.org/ 

If it’s not broken, don’t fix it! A hepatitis B vignette.

The Scenario

Yufei Zhao is 45 years old and lives with his family in Philadelphia,   Pa. Yufei discovered that he had hepatitis B when he attended a community health fair with his family. Even though he was instructed to talk about his diagnosis with a doctor and learn more about possible treatment options, Yufei decided to do nothing as he did not feel sick. While he has health insurance through his employer, he never utilizes any health care services. He often skips annual wellness visits as he says he “never gets sick.”  

A few weeks ago, Yufei’s family noticed that he has been skipping meals frequently saying he’s full or not hungry. At his daughter’s urging, he decided to go for a visit. After conducting some more tests, his doctor explained that the chronic infection with the hepatitis B virus had progressed substantially, and he had developed cirrhosis. After an MRI diagnosis, it was revealed that Yufei had liver cancer.

The Hepatologist (liver doctor) explained to Yufei that the liver is an important organ and acts as a cleaning system for the body. It removes toxic waste, purifies blood, and helps to digest food properly. When the virus entered the liver, it made many copies of itself and started attacking healthy liver cells. This led to inflammation and weakened the ability of the liver to carry out its most essential tasks. Because he was never monitored for hepatitis B, the virus allowed tumors to grow in the liver which caused the cancer. When the tumors grow in size or number, it eventually spreads to other parts of the body and disrupts other vital processes as well. 

The doctor mentioned that liver cancer is often called the silent disease because symptoms may not always be present. Even with a hepatitis B, a person could look or feel okay but that does not mean the virus isn’t active and causing damage. When the symptoms do show up, it might be too late to prevent liver cancer. After discussing his options with the doctor, Yufei learned that the best treatment for him was to get a liver transplant.  

He weighed the pros and cons of getting a transplant and consulted with his family. Now, Yufei is placed on a waiting list for a liver transplant to become available. In the meantime, his doctor has suggested other methods to destroy the smaller tumors without surgery through radiation (ablation). Yufei continues to spend more time with his family as he hopes to respond well to treatment until a new or partial liver is available.  

The Challenge

Cultural Perceptions on Health & Well-being 

  • Yufei is an older male in the household and the backbone of the family. For this reason, he considers it an obligation to prioritize his family over his personal health. It is important to understand these cultural and social beliefs prevalent in many different cultures and households. 
  • Family members should be advised to encourage their loved ones (especially older family members) to take charge of their health. It is important to check-in with your loved ones and assure them that sickness does not necessarily mean weakness. Taking care of one’s health can mean taking charge of one’s future.  

Hep B and Liver Cancer

  • Hepatitis B is a virus that causes inflammation of the liver. Without proper diagnosis and treatment, the virus can continue to multiply and damage healthy liver cells. This can lead to inflammation and scarring of the liver. This prevents the liver from doing its most important functions to maintain overall health which may result in the development of harmful tumors.  

Liver Cancer is a Silent Disease 

  • Many people with hepatitis B or liver cancer do not show symptoms of sickness but that does not mean the virus isn’t present or not actively working to harm the liver. Eventually, the physical symptoms will become noticeable as the virus/cancer advances to a more dangerous stage. 
What can you do?

Get tested! 

  • The most important thing you can do to prevent liver cancer is to get tested for hepatitis B. Most liver cancers develop from undiagnosed hepatitis B infections. There are a lot of people who have hepatitis B and do not know about it because they have never been tested. Even if you feel healthy and okay, it does not hurt to get tested!
  • If you don’t have hepatitis B, the test can tell you if you are vaccinated or if you need vaccination (which can provide lifelong protection from ever getting hepatitis B and help prevent liver cancer). 

Get screened! 

  • If you have hepatitis B, it is critical to manage the progression of the virus in your liver. For this reason, it is important to go through monitoring of your hepatitis B infection, liver health, and screen regularly for liver cancer.
  • Discuss with your doctor if you are at high-risk and how often you should get screened. It is recommended to get an ultrasound every 6 months to check how the virus is impacting the liver. AFP testing may also be done with regular monitoring of the liver to check for the possibility of liver cancer. 

Get educated! 

  • Stay up to date with the latest research and information on liver cancer! If you have hepatitis B, you should know that there is no cure for the virus but there is a lot of research that shows what you can do to ensure you live a healthy and long life.
  • Take an active role in learning about the disease and how it can affect your health over time. Learn about fibrosis, cirrhosis, liver cancer staging, and available treatments for hep B infection.  

References
  1. https://www.hepb.org/research-and-programs/liver/screening-for-liver-cancer/ 
  2. https://www.cancer.org/cancer/liver-cancer/treating/by-stage.html#:~:text=Treatment%20options%20might%20include%20ablation,%2C%20and%2For%20radiation%20therapy. 
  3. https://www.cancer.org/cancer/liver-cancer/detection-diagnosis-staging/staging.html 
  4. https://www.hepb.org/research-and-programs/liver/risk-factors-for-liver-cancer/ 

Ignore it till it goes away! A hepatitis B vignette.

The Scenario:

Woman is sick on couch, her husband is giving her an ice pack

Aroha Kawai just started a new job as a medical interpreter for Pacific Islander patients diagnosed with COVID-19. As a critical source of communication for the providers and the patients, she is often called to work night and weekend shifts. Aroha had a difficult conversation with the family members of a critical COVID-19 patient on whether they should discontinue ventilation support for the ailing grandmother. During this time, Aroha’s family noticed changes in her behavior. She stopped eating regularly, lost weight and repeatedly cancelled plans to go out. Aroha dismissed her family’s concerns as physical manifestations of the emotional burnout from work.

People are at a free hepatitis B screening event in a park.

Recently she attended a health fair hosted by her department at work. She approached a viral hepatitis screening booth and decided to get tested for hepatitis B. The following week, she received her results in the mail. Her results indicated that she had tested positive for hepatitis B. She shared her diagnosis with her mother who informed her that her grandfather died from liver cancer.  

Inside a doctor's office. A doctor is showing information about the liver. A woman with hepatitis B sits with her husband.

Aroha then followed up with her primary care doctor She discovered that she had chronic hepatitis B. Even though the ultrasound did not show any evidence of cirrhosis, her doctor ordered an imaging test (U/S, CT, MRI) to screen for liver cancer. Unfortunately, Aroha was diagnosed with early-stage liver cancer 

Inside a hospital room. A man and child visit a woman with hepatitis B in a hospital bed.

Fortunately, the cancer had not spread and did not infect nearby blood vessels. Her doctor suggested a partial hepatectomy to remove the tumor safely as the rest of the liver was still healthy. Aroha decided to adhere to her doctor’s advice and successfully underwent the surgery. She has taken some time off from work to focus on recuperating from the surgery and spending time with loved ones.  

 

 


The Challenge:
  1. Dismissal of Symptoms:
    • Aroha initially ignored the physical symptoms of liver cancer. It is true that signs and symptoms may not necessarily be present.
    • However, it is crucial to take care of one’s health and never ignore warning signs. Fatigue, unintended weight loss, and loss of appetite are a few of the symptoms of liver cancer. 
  2. Cancer without Cirrhosis: 
    • It is possible to get liver cancer without cirrhosis. Therefore, it is always important to screen for liver cancer if you have chronic hepatitis B infection. 
  3. Importance of Screening
    • Liver cancer screening is a highly effective method to detect malignant tumors and prevent cancer for those living with hepatitis B.
    • Early intervention increases the survival rate significantly and stops the cancer from spreading to other vital organs. 

What can you do?
  1. Get Help!
    • If you experience pain or discomfort of any kind, it is important to reach out for help. Set up an appointment with your doctor and discuss your concerns.
    • There is a good chance you might be misunderstanding an important health issue for side effects of stress or emotional burnout. Do not ignore your symptoms or feelings.  
  2. Get Screened!
    • Hepatitis B is a leading cause of liver cancer, most of the time it is because someone did not know they were infected with hepatitis B or were not managing their hepatitis B infection.
    • Everyone should be tested for hepatitis B to know their status. Ask your doctor for a hepatitis B screening today.  
  3. Stay on track!
    • If you have hepatitis B, it is critical to manage the progression of the virus in your liver. For this reason, it is important to go through liver cancer surveillance regularly. Discuss with your doctor if you are at high-risk and how often you should get screened.
    • It is recommended to get an ultrasound with blood work every 6 months to check how the virus is impacting the liver.  This includes the alpha-fetoprotein (AFP) blood test to measure the levels of AFP in your blood as it may indicate the presence of cancer cells in your liver. This can also help detect any scarring or tumors. 

Don't ignore it until it goes away. Get help. Get screened for hepatitis B. Stay on track.


Resources and Acknowledgements:
  1. https://www.cancer.org/cancer/liver-cancer/detection-diagnosis-staging/signs-symptoms.html 
  2. https://www.cancer.org/cancer/liver-cancer/treating/by-stage.html 
  3. https://www.hepb.org/research-and-programs/liver/prevention-of-liver-cancer/ 

Announcing New Liver Cancer Clinical Trials

Over the past few decades, there have been several advancements in liver cancer research and treatment. These have included improvements in chemotherapy treatments that can now successfully shrink tumors to a size at which they can be more easily surgically removed, and the development of therapies that block blood flow to tumors. Liver ablation (tissue removal) and transplantation techniques have also been greatly improved in recent years (Johns Hopkins Medicine, 2020). Many of these advancements would not have been possible without the help of clinical trial volunteers with liver cancer. Your contribution is important and valuable and may help research for the future. Learn more about these opportunities today.

The pharmaceutical company Bristol Myers Squibb (BMS) is now enrolling for two clinical studies in liver cancer (also called hepatocellular carcinoma or HCC). These trials have the reference numbers CA209-9DW and CA209-74W. If eligible and you are willing and able to take part, you will be helping to advance research.

One of these trials is researching a study drug called nivolumab. Researchers want to find out how well the study drug works, both with and without ipilimumab in combination with trans-arterial ChemoEmbolization (TACE), when compared to TACE alone in participants with intermediate-stage HCC. Eligible trial participants must be at least age 18 years old and must not have had a liver transplant, or be on the waiting list for a liver transplant. This is not a full list of trial requirements.

Another trial is researching nivolumab in combination with another study drug called ipilimumab (also called Yervoy) in participants with advanced HCC. Researchers in this trial want to find out how well this study drug combination works when compared to other drugs called sorafenib or lenvatinib. Eligible trial participants must be at least 18 years old and must not have had any type of prior chemotherapy. This is not a full list of trial requirements.

For more details about each trial, including full trial requirements, lists of tests and procedures used to determine trial eligibility, and more details about Bristol Myers Squibb, please visit the BMSStudyConnect website.

Before you decide to enroll in a clinical trial, you can download the Study Participant’s Guide. This guide is available in many languages on this site, and includes information about trial participation, why clinical studies are important, questions to ask your doctor before participating, guidance on transportation and lodging during a clinical trial, helpful tips on how to prepare to take part in a trial, and links to helpful resources.

References

Johns Hopkins Medicine. (2020). 4 Liver Cancer Treatment Advances. https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/4-liver-cancer-treatment-advances.

Does Hepatitis Delta Increase My Risk for Liver Cancer?

 

 

 

 

 

The short answer is, possibly.  Although there is extensive research to support the role of hepatitis delta in accelerating the risk for progression to cirrhosis (liver scarring) compared to hepatitis B infection (1,2) only, strong data directly linking an increase in risk for hepatocellular carcinoma (HCC) is lacking. It is known that coinfection promotes continually progressing inflammation within the liver by inducing a strong immune response within the body; where it essentially attacks itself (3), but the specific role of hepatitis delta in HCC isn’t fully understood. It gets complicated because although cirrhosis is usually present in hepatitis B patients who also have HCC, but scientists have not pinpointed a specific way that the virus may impact cancer development (4). There have been some small studies that have documented a correlation between hepatitis delta and an increase in HCC, but some analysis’s have even called the extent of its involvement in HCC as ‘controversial’ (5). However, other scientific studies may suggest the contrary.

Because hepatitis delta cannot survive without hepatitis B, and doesn’t integrate into the body the same way, it may not be directly responsible for cancer development, but it has been suggested that the interactions between the two viruses may play a role (6). It has also been suggested that hepatitis delta may play a role in genetic changes, DNA damage, immune response and the activation of certain proteins within the body – similarly to hepatitis B and may amplify the overall cancer risk (7,8). One of these theories even suggests that hepatitis delta inactivates a gene responsible for tumor suppression, meaning it may actually promotes tumor development, a process that has been well-documented in HCC cases (9,10).

Regardless of the specific impact or increase in risk for HCC due to the hepatitis delta virus, hepatitis B is known to increase someone’s risk, with 50-60% of all HCC globally attributable to hepatitis B (11). People with hepatitis delta coinfection still need to be closely monitored by a liver specialist, as 70% of people with both viruses will develop cirrhosis within 5-10 years (12). Monitoring may be blood testing and a liver ultrasound to screen for HCC every 6 months. Closer monitoring may be required if cirrhosis is already present, or to monitor response to treatment (interferon).

For more information about hepatitis delta, visit www.hepdconnect.org.

References:

  1. Manesis EK, Vourli G, Dalekos G. Prevalence and clinical course of hepatitis delta infection in Greece: A 13-year prospective study. J Hepatol. 2013;59:949–956.
  2. Coghill S, McNamara J, Woods M, Hajkowicz K. Epidemiology and clinical outcomes of hepatitis delta (D) virus infection in Queensland, Australia. Int J Infect Dis. 2018;74:123–127.
  3. Zhang Z, Filzmayer C, Ni Y. Hepatitis D virus replication is sensed by MDA5 and induces IFN-β/λ responses in hepatocytes. J Hepatol. 2018;69:25–35.
  4. Nault JC. Pathogenesis of hepatocellular carcinoma according to aetiology. Best Pract Res Clin Gastroenterol. 2014;28:937–947.
  5. Puigvehí, M., Moctezuma-Velázquez, C., Villanueva, A., & Llovet, J. M. (2019). The oncogenic role of hepatitis delta virus in hepatocellular carcinoma. JHEP reports: innovation in hepatology, 1(2), 120–130.
  6. Romeo R, Petruzziello A, Pecheur EI, et al. Hepatitis delta virus and hepatocellular carcinoma: an update. Epidemiol Infect. 2018;146(13):1612‐1618.
  7. Majumdar A, Curley SA, Wu X. Hepatic stem cells and transforming growth factor β in hepatocellular carcinoma. Nat Rev Gastroenterol Hepatol. 2012;9:530–538.
  8. Mendes M, Pérez-Hernandez D, Vázquez J, Coelho AV, Cunha C. Proteomic changes in HEK-293 cells induced by hepatitis delta virus replication. J Proteomics. 2013;89:24–38.
  9. Chen M, Du D, Zheng W. Small Hepatitis Delta Antigen Selectively Binds to Target mRNA in Hepatic Cells: A Potential Mechanism by Which Hepatitis D Virus Down-Regulates Glutathione S-Transferase P1 and Induces Liver Injury and Hepatocarcinogenesis. Biochem Cell Biol. August 2018.
  10. Villanueva A, Portela A, Sayols S. DNA methylation-based prognosis and epidrivers in hepatocellular carcinoma. 2015;61:1945–1956.
  11. Hayashi PH, Di Bisceglie AM. The progression of hepatitis B- and C-infections to chronic liver disease and hepatocellular carcinoma: epidemiology and pathogenesis. Med Clin North Am. 2005;89(2):371‐389.
  12. Abbas, Z., Abbas, M., Abbas, S., & Shazi, L. (2015). Hepatitis D and hepatocellular carcinoma. World journal of hepatology, 7(5), 777–786.

 

Clinical Trials Finder – Find A Clinical Trial Near You!

 

The Hepatitis B Foundation is thrilled to announce the addition of a new clinical trials search tool to our website! People around the world can now easily search for clinical trial opportunities on the Hepatitis B Foundation website. Created by Antidote – a company that designs technologies to link patients with scientific opportunities – the new tool filters through all of the trials listed in the U.S. National Library of Medicine’s database of private and publicly funded studies. Searching for clinical trials can be time-consuming and confusing to navigate, but this resource eases the process by finding the best trials for you based upon a series of questions.

You can now search for hepatitis B, hepatitis D and liver cancer clinical trials with a few simple clicks! Clinical trials are a series of research phases that a new drug must go through in order to be approved for widespread use. They are an essential to proving that a treatment is safe and effective for the larger population. Generally, these trials take 10-15 years to go from the laboratory to the public, but delays in finding or retaining enough volunteers can extend the process. 

Diverse participation in clinical trials is needed to make sure that a treatment is effective for all groups. Research diversity matters greatly for several reasons. Studies have shown that different races and ethnicities may respond differently to a certain medication. In addition, researchers need to examine the impact of the medication on the populations that will eventually use them. According to data from the U.S. Food and Drug Administration (US FDA), individuals from Africa and Asia or of African and Asian descent consistently remain underrepresented in clinical trials; these populations are also disproportionately impacted by hepatitis B.  If these groups are underrepresented in trials for hepatitis B treatments, new drugs may not be as effective in these communities, or there may be side effects that researchers were not aware of. 

How Our Clinical Trials Finder Works 

 Using our Clinical Trial Finder takes just a few minutes. After clicking the ‘search’ button, the user will answer a series of questions of general demographic and health questions to determine what trials are near you and you fit the criteria for. You will be able to view the available trials at any point while answering questions, but answering all of the questions will give you the best results. You will also have the option to leave your email to receive personalized trial alerts for new trials that you are eligible for in your area! The new tool is designed to match those who wish to join a clinical trial to the best option for them; it is not designed to benefit any company.

 Benefits of Participating in Clinical Trials

While participating in clinical trials helps drug developers, it can also provide major benefits to the participant as well! Blood work, treatments, and monitoring – which can be expensive –  are often provided for free to those who are eligible for the duration of their participation in the study. Volunteers can also potentially benefit from the latest medical advancements and developments! 

Help Improve the Future of Clinical Trials 

You can also help improve the future of drug development and clinical trials by taking our patient engagement survey! The survey, which takes approximately 20-25 minutes to complete, will be made available for use by the US FDA and drug development researchers to help clinical trial development for future hepatitis B therapies. All survey responses are anonymous.