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Celebrating Liver Cancer Awareness Month: A Conversation with the American Liver Foundation

 

 

 

 

In honor of Liver Cancer Awareness Month, the Hepatitis B Foundation sat down with Ivory Allison, National Senior Director of Community Impact at the American Liver Foundation (ALF), to discuss what this month means to ALF, how they celebrate, and why addressing liver cancer is so important. Read on to learn more!

Could you please share a little bit about the history, vision, and mission of the American Liver Foundation (ALF) and what are some of the programs and activities that you lead?

Absolutely. First, thank you for inviting the American Liver Foundation to be a part of this. We are very excited to have this opportunity. Partnering with the Hepatitis B Foundation is something that we’ve done for a very long time, and we enjoy having the opportunity to continue this partnership, especially during October.

The American Liver Foundation was created in 1976, so we are 48 years old. we were created by the American Association for the Study of Liver Disease (AASLD). That organization is comprised of scientists and healthcare professionals, who at the time were concerned with the rising incidence of liver disease and the lack of awareness amongst both the public and the medical community at that time. The mission of ALF was to complement the programs and services provided by AASLD. So, they focused on medical professionals, and we focused on patients and the general public. We are a 501(c)3 nonprofit and our mission is to promote education, advocacy, support services, and research for the prevention, treatment, and cure of liver disease. When you look at that, that’s huge to cover because we don’t focus on any specific liver disease – our focus is on liver disease in general.

We try and make a measurable difference in the fight against liver disease by providing financial support for medical research. We have a research department and education for medical professionals. For example, we had a few education programs this past summer. We launched a program called Project ECHO for medical professionals and providers to learn more about MASLD, or fatty liver disease, and we’re going to continue that the rest of this year, every month, and continue it hopefully in 2025. And of course, programs for advocacy and information for patients, including educating patients and their families by creating public awareness campaigns about liver wellness and disease prevention, are our focus.

I currently oversee a few different initiatives. One of them is our liver cancer initiatives which include a two-day liver cancer conference that we’ve held since 2020, called the Educated Patient for patients and caregivers. This year we’re trying something new where we are focusing on a liver cancer series that we actually kicked off in September, specifically for pediatric liver cancer, because September was Pediatric Cancer Awareness Month. In October, we actually have two programs that will be happening for liver cancer and then we have one that will be ending in November. The other couple programs that I’ve overseen include our Rare Liver Disease Summit, our autoimmune forum, and our pediatric initiatives.

I also oversee some of our collaborations with the Center for Disease Control Viral Hepatitis Division. I have worked with them for the last three or four years on programs, including hepatitis C barriers to treatment in community-focused primary care.

Is there anything in particular or maybe a couple of things that you enjoy most about your work?

I really enjoy working with the partners, and our partner organizations. Hepatitis B, hepatitis C, and other liver diseases affect so many people, especially in diverse communities and that’s also something that I’m glad that we have had the opportunity to focus on that under our CEO Lorraine Stiehl, who’s made that a priority. Liver disease, of course, affects so many different people and to be intentional about making sure that we focus on these particular groups where liver cancer is high is crucial. Being able to do programming and targeting these communities to educate them is something that I think has been exciting.

What are some of the primary causes of liver cancer?

Hepatitis B and hepatitis C are common risk factors for liver cancer worldwide and people who are infected with both viruses have an even higher risk. There are certain risks to getting liver inflammation such as heavy alcohol use and tobacco use of course. MASLD is also a high-risk factor for liver cancer. What ALF has been trying to do is have programs specifically for risk factors for liver cancer. But people who have hepatitis B, hepatitis C, or MASLD often don’t realize that they are at high risk for liver cancer. So, our goal is to go to those communities to educate them about the potential risk of liver cancer.

Why is early detection of liver cancer so important and what are some strategies that can be used to increase prevention and early detection of liver cancer?

Improving early access to screening, education, and treatment is vital. This includes educating the general public and people who have liver disease about liver cancer, so that we can prevent it. It is difficult when people have liver cancer and have to go through treatment or get a liver transplant.

At ALF, we have a public health campaign called Think Liver Think Life. It’s a national public health campaign that which aims to ensure every American understands their risk for liver disease, factoring in things like drinking heavily, smoking, and being in the “baby boomer” generation. We tried to allow for the appropriate screening and care coordination through this campaign. We have liver health specialists that go around the country to different events educating and raising awareness and providing screenings in some locations about these risk factors.

What are the barriers when it comes to raising awareness or implementing screening protocols?

Resources and language barriers. For us, we have someone on staff who oversees our connection to care. For example, when we’re out in the community educating people about liver disease, doing screenings, or are at the clinic, we have someone on our team who is bilingual in Spanish, and she can connect with these patients. We have also made multiple languages available on our website, so you can translate the website from English to Spanish, Chinese, or Italian. This has been very helpful for many people. Also, when you talk about certain communities who are so focused on their families and work, they put their health on the back burner. They’re focusing on feeding their children, taking care of their families, and they aren’t putting their health as the number one priority. And we see that all over, right?

What we’re trying to do now is to make it so that we are educating the whole family, instead of focusing on one person. We’re trying to say to the mom, “This is important.” If your child has MASLD or someone in your family may be at high risk, it’s important for not just them, but for you as well to be screened and tested because many people, especially women, put their children’s health before their own. We like to say, if we can educate the mom or the wife, we educate the whole family.

So, make sure you’re getting screened because when your family sees what you’re doing, they’ll normally follow through. They will also make sure that they’re getting screened or that they’re eating healthy and cutting back on cigarette and alcohol use.

Is there any advice you would give to someone who is currently living with liver cancer, someone who’s indirectly impacted, or someone at high risk of liver cancer?

For someone living with liver cancer it is important to not isolate yourself. I can imagine it is very overwhelming and very scary to be diagnosed with liver cancer and living with liver cancer. But make sure that you are communicating with your family, friends, especially your doctor, and connecting with others who are going through what you’re going through. At ALF, we have a private liver cancer Facebook group for patients as well as caregivers. You can also join that group to find that community so you can connect with people and talk with people. We also have monthly support groups at the American Liver Foundation via Zoom, moderated by a licensed social worker. You can connect with others and just talk. You see a lot of people who are going through liver cancer who get depressed, and it’s really difficult for them to continue with treatment. So, I would say, don’t isolate yourselves. Find your community. If it’s two people, three people, whoever it is, and make sure you continually connect with your medical team. Get to know your team and understand that you’re the boss of your healthcare team. Don’t be afraid to communicate with them and let them know what’s happening or what’s going on. If you’re not comfortable with your team, first talk to them. If you’re still not feeling that team, move on, because again, you’re the number one.

If you’re at high risk for liver cancer, I would say, again, talk to your medical providers and find out what the next steps are and what you can do to prevent liver cancer. Talk to them, educate yourself, but don’t overwhelm yourself. Educate yourself because what the medical providers tell you may be overwhelming. Also, get vaccinated against hepatitis B, get tested for hepatitis C, and get medical care if you have either virus.

Why is it important to have a month specifically dedicated to liver cancer awareness, and what are some activities that ALF is involved in to celebrate liver cancer awareness month?

I think it’s important for us to have an opportunity to highlight this particular disease, raise awareness, and educate the public. It puts a spotlight on this disease and for an entire month, we can have campaigns and weekly programs and put a face to liver cancer so people are knowledgeable, and the importance doesn’t get lost throughout the year.

For Liver Cancer Awareness Month, we have a few things happening. We have a program on October 23rd on how to prevent liver cancer if you are at high risk. It’s going to be in Spanish. We are also releasing a video on how to be involved with your medical team and how to interact with your team.

We are also going to be releasing a 30-Day Menu of Recipes so people can hopefully check out some healthy recipes. We tell people all the time that they should eat healthily, and sometimes we realize many people don’t know what that means. To address this, we are going to be launching in October a 30-day menu. Then, of course, our Think Liver Think Life campaign will pick up a little extra in October as well.

Is there anything else you would like to share?

This year, we also launched a patient registry. It’s the first-ever patient registry for all types of liver disease, and it will help provide researchers with a better understanding of liver diseases, the impact of current treatments, and how liver disease affects patients. People can find more information at www.liverpatientregistry.org, and they can find and read about why they should participate, what they would have to do, how it works, and who can participate. And of course, they can always go to our website, www.liverfoundation.org, for more information on any of our programs, events, and policies.

Click the link for more ALF events and programs: https://liverfoundation.org/resource-center/blog/october-is-national-liver-awareness-month-do-you-know-your-liver-health/

Thank you so much for taking the time to speak to the Hepatitis B Foundation today! We really appreciate your time and insights, and all of the great work ALF is doing!

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

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

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

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

Can you introduce yourself and your organization? 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Highlighting the Relationship between Hepatitis B and Liver Cancer

Highlighting the Relationship between hepatitis B and Liver Cancer

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

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

Summary of focus group findings:

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

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

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

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

Experiences of Community Focus Group Facilitators

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

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

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

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

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

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

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

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

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

Conclusion

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

References

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

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

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

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

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

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

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

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

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

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

Hepatitis B Diagnosis & Monitoring, Liver Cancer

Fighting the Doom and Gloom: Screening Saves Lives!

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blood tubes

By Anu Hosangadi

Liver Cancer Connect’s “Fighting the Doom and Gloom” series is highlighting some of the advances in prevention, screening, and treatment that are helping to increase survival among people with liver cancer. Previously, we talked about how prevention works. Now we’ll explain how screening and surveillance save lives.
Continue reading "Fighting the Doom and Gloom: Screening Saves Lives!" →

Hepatitis B Treatment, Liver Cancer

Fighting the Doom and Gloom: It Takes a Team

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universal-health-care-medical-team

By Anu Hosangadi

People generally think liver cancer is non-treatable and non-curable. But that perception needs to change. Diagnosis and treatment of liver cancer have improved so much in the past 20 years that it can be cured if caught early and managed by an experienced health care team. Liver Cancer Connect’s “Fighting the Doom and Gloom” series explains how the right treatment plan  and teamwork offer the best chances for a cure.  Continue reading "Fighting the Doom and Gloom: It Takes a Team" →

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Liver Cancer, Living with Hepatitis B

October is Liver Cancer Awareness Month! What’s the Hep B Connection?

Liver Cancer Ribbon

According to the World Health Organization (WHO), liver cancer is the second most common cancer in the world, leading to 788,000 annual deaths worldwide. Most liver cancer cases occur in developing countries. More than 80 percent of these cancers are found in sub-Saharan Africa and Eastern Asia where more than 20 of every 100,000 people will suffer and die from liver cancer. However, liver cancer is alarmingly on the rise in developed countries, as well. In a recent study, researchers from The American Cancer Society found that liver cancer is the fastest-growing cause of cancer deaths in the United States. Only 20 percent of people diagnosed with liver cancer survive beyond five years, and the number of deaths have doubled since the mid-1980s, and they are expected to continue to rise.

Why is liver cancer growing in most of the world? There are many risk factors for liver cancer, but chronic hepatitis B accounts for up to 60% of liver cancer and is the most common risk factor for this type of cancer. People who are chronically infected with hepatitis B are 100 times more likely to develop liver cancer compared to those who are not. The hepatitis B virus attacks the liver directly and repeatedly over time. This can lead to liver damage and scarring of the liver (or cirrhosis); which greatly increases the risk of liver cancer.

Sometimes, people with hepatitis B can develop liver cancer even when they do not have cirrhosis. There are a number of complicating factors which can  increase the risk of liver cancer including traits specific to the virus and the person and their health status, which should be discussed with a liver specialist to determine when you should initiate screening.

How many years have you had hepatitis B? The longer you’re infected, the higher your risk of liver cancer.

What is your gender? Men are considered at higher risk of liver cancer and may be screened starting at an earlier age because they may be more likely to smoke, drink alcohol, have more “active” hepatitis, and higher iron stores—all of which increase cancer risk. Estrogen is believed to protect pre-menopausal women against liver cancer.

Have you had a high viral load (HBV DNA) after age 30? Having a viral load exceeding 2,000 international units per milliliter (IU/mL) is associated with a higher risk of liver cancer even if you have no other signs of liver damage.

Do you have a family history of liver cancer? If an immediate family member has had liver cancer, this greatly increases your risk.

Are you overweight, or have you been diagnosed recently with type 2 diabetes? A fatty liver and/or diabetes increase your risk of liver damage and cancer dramatically when you’re also infected with hepatitis B.

Do you have hepatitis B virus genotype C or core/precore viral mutations? Originating in Asia, this hepatitis B strain is associated with loss of the hepatitis B e antigen (HBeAg) later in life. That means you may have had a high viral load and liver damage for a longer period than people with genotypes who clear HBeAg at a younger age. Having core or precore mutations in your HBV also increase liver cancer risk.

If you are living with chronic hepatitis B and are concerned about liver cancer, there are steps you can take. Working with a good health care provider to manage your hepatitis B is important, as is having a healthy lifestyle. Talk to you doctor about your risk, and about getting screened for liver cancer at least annually – early detection saves lives!

To commemorate Liver Cancer Awareness Month this October, help us spread the word about the link between hepatitis B and liver cancer! You can also join our Twitter Chat on Thursday, October 12th at 2:00pm – along with our partners CDC Division of Viral Hepatitis, and the National Alliance of State and Territorial Aids Directors (NASTAD). To join the chat, use the hashtag #liverchat. For more information, visit our blog post.

Remember to talk to your doctor about the risk factors for liver cancer, and if you have hepatitis B, ask to get screened for liver cancer. For more information about liver cancer visit the Liver Cancer Connect website.

Hepatitis B Advocacy, Liver Cancer, Living with Hepatitis B

October is Liver Cancer Awareness Month

Image courtesy of Stuart Miles at FreeDigitalPhotos.net
Image courtesy of Stuart Miles at FreeDigitalPhotos.net

By Christine Kukka

In an era of hepatitis B immunization and improved health care, an alarming trend is happening — liver cancer is increasing and is now the second-leading cause of cancer deaths around the world.

This is why it’s critical that everyone living with hepatitis B should demand to be screened for liver cancer. There are three key reasons why liver cancer rates remain high:

  • Too few people are tested for hepatitis B, which is why two-thirds of Americans living with hepatitis B don’t know they’re infected.
  • Only 20 percent of doctors follow liver cancer screening guidelines and test at-risk hepatitis B patients for liver cancer. By the time liver cancer is diagnosed, it’s often too late for effective treatment.
  • And, screening guidelines themselves are inadequate and fail to use valuable blood tests that help identify liver cancer in its early, treatable stages.

Today, the majority of liver cancer cases occur in developing countries, fueled by undiagnosed and untreated hepatitis B. More than 80 percent of these cancers are found in sub-Saharan Africa and Eastern Asia where more than 20 of every 100,000 people will suffer and die from liver cancer.

But make no mistake, liver cancer happens in North America and Europe too. Because people aren’t effectively screened for hepatitis B and liver cancer, an estimated 10 percent of people with chronic hepatitis B will develop liver cancer in developed countries. Most face a bleak outlook, only 20 percent of people diagnosed with liver cancer survive beyond five years.

But you can beat these odds. In celebration of Liver Cancer Awareness Month, we need to insist that our doctors screen us for liver cancer. When diagnosed early, treatment succeeds and survival improves markedly.

Medical guidelines that recommend when and how we are tested for liver screening vary dramatically around the world, but most of them are inadequate, according to a recent report. The U.S. and European guidelines, for example, recommend an ultrasound of the liver every six months.

But an increasing number of experts, including Hepatitis B Foundation Medical Director Dr. Robert Gish, are promoting the combined use of an ultrasound plus two blood tests — for alpha fetoprotein (AFP) and des-gamma carboxyprothrombin (DCP) — to help identify liver cancer in its early, treatable stages.

Current medical guidelines recommend anyone with cirrhosis (liver scarring) should be screened every six months for liver cancer because 80 percent of people diagnosed with liver cancer also have cirrhosis. The guidelines also state that patients who have a family history of liver cancer, are coinfected with HIV or hepatitis C, or who are young males of African descent should also be tested for cancer at any age.

Many of us don’t have these risk factors, but we are still at risk. Our liver cancer incidence is much lower than if we had cirrhosis, but it’s still there and we need to be tested using the best tools available.

Age is clearly an important factor when it comes to liver cancer, especially if we have had hepatitis B for several decades, but current guidelines only provide age-specific screening recommendations in people of Asian ethnicity (men over age 40 and women over age 50).

As doctors debate whether these guidelines should be changed to promote earlier or more frequent screening, here are some questions to review with your doctor to determine if you should be screened for liver cancer:

How many years have you had hepatitis B? The longer you’re infected, the higher your risk of liver cancer. Men of African descent are found to develop liver cancer at an earlier age than other races and should be screened starting in their 20s.

What is your gender? Men are considered at higher risk of liver cancer at an earlier age because they may be more likely to smoke, drink alcohol, have more “active” hepatitis, and higher iron stores—all of which increase cancer risk. Estrogen is believed to protect pre-menopausal women against liver cancer.

Have you had a high viral load (HBV DNA) after age 30? Having a viral load exceeding 2,000 international units per milliliter (IU/mL) is associated with a higher risk of liver cancer even if you have no other signs of liver damage.

Do you have a family history of liver cancer? If an immediate family member has had liver cancer, this greatly increases your risk.

Are you overweight, or have you been diagnosed recently with type 2 diabetes? A fatty liver and/or diabetes increase your risk of liver damage and cancer dramatically when you’re also infected with hepatitis B.

Do you have hepatitis B virus genotype C or core/precore viral mutations? Originating in Asia, this hepatitis B strain is associated with loss of the hepatitis B e antigen (HBeAg) later in life. That means you may have had a high viral load and liver damage for a longer period than people with genotypes who clear HBeAg at a younger age. Having core or precore mutations in your HBV also increase liver cancer risk.

Talk to your doctor, even if you haven’t had liver damage and have had a low viral load or undetectable viral load for many years, ask if it’s time for a liver cancer test. For more information about liver cancer visit the Liver Cancer Connect website and for more information about screening for liver cancer, click here.

On Tuesday, Oct. 25, representatives from Hep B United, CDC’s Division of Viral Hepatitis, and the National Alliance of State and Territorial Aids Directors (NASTAD)  will be co-hosting a twitter chat at 2 p.m. EST using the hashtag #liverchat.

Hepatitis B Advocacy, Liver Cancer

Beating the Odds: A Liver Cancer Survivor’s Story

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Liver cancer, caused by hepatitis B and C, is on the rise in the U.S. and it is also the second deadliest. Fewer than 15 percent of patients with liver cancer will survive five years after their diagnosis. It is the third-leading cause of cancer deaths among Asian-Americans and the eighth-leading cause of cancer deaths among Caucasian-Americans.

Despite this bleak outlook, there are people with liver cancer who are beating the odds and surviving. The medical community is also working hard to develop new drugs and effective strategies to treat liver cancer. Here is one survivor’s story.

By Frank Gardea

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

In late 2008, during routine testing before surgery, I found out I had hepatitis C and liver cirrhosis. It was a double whammy because having both viral hepatitis and cirrhosis put me at high risk for liver cancer.

Then the abdominal pain started. I suffered for almost three years and was in and out of the emergency department. They could not pinpoint the cause of the pain. When they finally diagnosed my liver cancer, the tumor was over 8 cm in size. Continue reading "Beating the Odds: A Liver Cancer Survivor’s Story" →

Hepatitis B Diagnosis & Monitoring, Liver Cancer

Your Doctor Not Screening You for Liver Cancer? Time for a Talk

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Image courtesy of FreeDigitalPhotos.net
Image courtesy of FreeDigitalPhotos.net

The longer we have hepatitis B, the higher our risk of developing liver cancer. With every decade of life, our liver cancer risk increases 2.7-times, according to a report on Viral Hepatitis in the Elderly published in the American Journal of Gastroenterology.

But current medical guidelines don’t spell out exactly when liver cancer testing should begin in many hepatitis B patients who don’t have liver damage (cirrhosis) or a family history of liver cancer, and are not of Asian or African descent.

Age is clearly an important factor when it comes to liver cancer, “… but current guidelines only provide age-specific recommendations for (liver cancer) surveillance in hepatitis B carriers of Asian ethnicity (men over age 40 and women over age 50),” a team of University of Miami and Veterans Affairs researchers wrote in the journal article. Continue reading "Your Doctor Not Screening You for Liver Cancer? Time for a Talk" →

Hepatitis B Diagnosis & Monitoring, Liver Cancer, Living with Hepatitis B

Get Tested for Liver Cancer, Your Life May Depend on It

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Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

October is Liver Cancer Awareness Month. It may be a sleeper of a event when compared to other health campaigns, but for us who live with viral hepatitis, it’s an uncomfortable but critical reminder of the importance of monitoring our liver health to prevent cancer.

Viral hepatitis, especially B and C, are viral infections that can cause liver cancer  (also called hepatocellular carcinoma or HCC.) Researchers are still studying why some people are more prone to liver cancer, but we who live with chronic hepatitis B or C have a 25 to 40 percent lifetime risk of developing liver cancer. The infection, which hijacks our liver cells to manufacture more virus, causes inflammation, scarring and even cancer as the liver cells grow out of control.

The longer we are infected with viral hepatitis, the higher our risk of developing liver cancer. While liver cancer often occurs in people with cirrhosis (severe liver scarring), some of us develop cancer without cirrhosis. Continue reading "Get Tested for Liver Cancer, Your Life May Depend on It" →

Baruch S. Blumberg Institute