Hep B Blog

Category Archives: Liver

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Treatment, Hepatitis D Drug Development, Liver, Liver Health, Living with Hepatitis B

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

 

 

 

 

 

 

 

 

 

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

Why unregulated alternative medicine is risky 

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

Why evidence-based health decisions are important 

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

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

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

Safe and effective treatment for hepatitis b: 

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

Treatments fall into two categories: 

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

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

Helpful resources for hepatitis b patients 

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

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

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

References: 

https://www.thecable.ng/how-unregulated-alternative-medicine-trade-endangers-hepatitis-b-patients-in-abuja/#google_vignette 

Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Cancer Awareness Month, Liver Health

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!

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Advocacy, Hepatitis B Awareness, Liver

Why Access to Birth Dose Remains a Challenge Despite Availability of Vaccine. 

 

 

 

 

 

 

 

 

 

Birth dose is the most critical public health tool to prevent the spread of new hepatitis B infections among newborn children. Vaccination at birth provides lifelong protection against hepatitis B and reduces the chances of developing chronic hepatitis B. However, access to birth dose and vaccinations for children remains a challenge in many countries, especially countries low- and middle-income countries with high prevalence of hepatitis B, despite the availability of safe and effective vaccines.  

Lack of Knowledge 

Many communities are unaware of the hepatitis B virus and how it can cause severe damage to the liver, especially for newborn children. Mothers who deliver children at home or without appropriate medical care are also less likely to get the birth dose for their babies. Lack of knowledge about the spread of the virus and vaccination persists among some medical providers and professionals as well, making it harder for families to get birth dose for their children in a timely manner. Misconceptions about the virus and the vaccine also makes it difficult to get children vaccinated. Educational campaigns should focus on raising awareness about the hepatitis B virus and teaching communities about the role of the birth dose in preventing serious liver disease and death (Freeland et al., 2023).

Cost and Transportation 

Many families mentioned cost to be a barrier to getting the birth dose for their children. For some mothers, they were unable to deliver at health facilities or lacked safe transportation to get to a health facility to get their children vaccinated. For families who lived in rural areas, finding a nearby health facility was a challenge. This also makes it difficult for mothers to return to the health facilities to get the remaining doses for their children.  

Lack of Political Will and Advocacy 

While the birth dose is available in many countries with high rates of hepatitis B, it is not always accessible to people who need it most. Local governments and health ministries must lead national vaccine advocacy campaigns to spread awareness about the availability and importance of getting children vaccinated at birth to prevent hepatitis B. Additionally, the hepatitis B birth dose should be available to all families at no cost. Vaccine advocacy efforts should focus on debunking myths and misconceptions about the virus and the birth dose.  

GAVI, the Vaccine Alliance has launched a new initiative to tackle some of these challenges and expand access to hepatitis B birth dose where it is needed most. Learn more about the new vaccination programme here.

 

References:  

Boisson, A., Goel, V., Yotebieng, M., Parr, J. B., Fried, B., & Thompson, P. (2022). Implementation Approaches for Introducing and Overcoming Barriers to Hepatitis B Birth-Dose Vaccine in sub-Saharan Africa. Global health, science and practice, 10(1), e2100277. https://doi.org/10.9745/GHSP-D-21-00277 

Freeland, C., Kanu, F., Mohammed, Y., Nwokoro, U. U., Sandhu, H., Ikwe, H., Uba, B., Asekun, A., Akataobi, C., Adewole, A., Fadahunsi, R., Wisdom, M., Akudo, O. L., Ugbenyo, G., Simple, E., Waziri, N., Vasumu, J. J., Bahuli, A. U., Bashir, S. S., Isa, A., … Tohme, R. A. (2023). Barriers and facilitators to hepatitis B birth dose vaccination: Perspectives from healthcare providers and pregnant women accessing antenatal care in Nigeria. PLOS global public health, 3(6), e0001332. https://doi.org/10.1371/journal.pgph.0001332 

300 Million Reasons, About Hepatitis B, HBV, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Health, World Hepatitis Day

Đọc về chiến dịch mới ra mắt “Learn the Link” của Hepatitis B Foundation cùng Cô Dung Hứa của Hội Ung Thư Việt Mỹ (VACF)

 

 

 

 

 

 

 

 

 

Tháng này, chúng tôi có dịp trò chuyện với cô Dung Hứa của Vital Access Care Foundation, hay còn được biết đến với tên Vietnamese American Cancer Foundation – Hội Ung Thư Việt Mỹ. Cô Dung và đội ngũ VACF liên tục làm việc để trợ giúp nhu cầu của cộng đồng người Việt tại Quận Cam, California và các khu vực lân cận. Cô Dung cho chúng tôi biết về các kinh nghiệm trong việc ngăn ngừa bệnh viêm gan B và ung thư gan trong cộng đồng, cũng như sự đóng góp vào chiến dịch Learn the Link, chính thức khởi động vào tháng 2 năm 2024. Cô Dung chia sẻ những thử thách mà mình phải đối mặt, những trải nghiệm quý giá và nhiều cách cô ấy làm việc để kết nối và nâng cao hiểu biết cho cộng đồng. 

Chiến dịch Learn the Link được tạo ra nhằm nâng cao nhận thức về mối liên hệ giữa bệnh viêm gan B mãn tính và ung thư gan một cách phù hợp về mặt văn hoá cho các cộng đồng chịu ảnh hưởng nặng nề nhất. Chiến dịch được thông tin thông qua việc trực tiếp nói chuyện với các thành viên trong cộng đồng và được xây dựng với việc tập trung và ưu tiên các nhu cầu của họ. Hepatitis B Foundation – Quỹ Viêm Gan B đã tổ chức các nhóm thảo luận và thành lập một ban cố vấn để tìm hiểu về nhu cầu và lo ngại của cộng đồng, qua đó tạo ra tài liệu tham khảo thích hợp với các nền văn hoá khác nhau. 

Cô có thể giới thiệu về bản thân và cơ quan của cô được không? 

Tên tôi là Dung và tôi hiện đang làm việc tại Vital Access Care Foundation – Hội Ung Thư Việt Mỹ. VACF vừa chính thức đổi sang tên tiếng Anh mới vì đã mở rộng các dịch vụ không chỉ tập trung vào bệnh ung thư, tuy nhiên chương trình Hướng Dẫn Toàn Vẹn về Ung Thư, và chương trình về Viêm Gan B – Ung Thư Gan vẫn là trọng tâm chính. VACF được thành lập vào năm 1998 và cung cấp các dịch vụ hỗ trợ chung về ung thư, sau này phát triển thành chương trình tập trung vào bệnh ung thư vú. Vào năm 2003, VACF bắt đầu các chương trình về gan và viêm gan B. Một trong những người sáng lập VACF là bác sĩ chuyên khoa ung thư và một người sáng lập khác là bác sĩ chuyên khoa tiêu hoá, hai bác sĩ này giúp tư vấn và hướng dẫn cho chương trình viêm gan B và ung thư gan của VACF. 

Cô có thể cho tôi biết về các chương trình của VACF nhằm ngăn ngừa trực tiếp bệnh viêm gan B và ung thư gan không? 

Các chương trình về viêm gan B và ung thư gan của VACF tập trung vào cộng đồng người Việt. VACF cung cấp dịch vụ tiếp cận, nâng cao hiểu biết, hướng dẫn bệnh nhân và xét nghiệm truy tầm bệnh. VACF bắt đầu bằng việc phổ biến thông tin vì nhiều người trong cộng đồng không biết về bệnh viêm gan B. VACF tổ chức các buổi truy tầm cho cộng đồng tại nhà thờ và các sự kiện văn hoá. Mọi người thường hay đồng ý làm xét nghiệm khi VACF tổ chức truy tầm ở các sự kiện này. Nếu ai đó xét nghiệm dương tính với viêm gan B, VACF sẽ hướng dẫn và kết nối họ tới dịch vụ chăm sóc. Nếu có ai cần tiêm ngừa, họ sẽ được hướng dẫn đi tiêm ngừa. Nếu gặp phải một trường hợp phức tạp hơn, nhân viên sẽ tham khảo ý kiến một trong những thành viên trong Hội Đồng Quản Trị để có tư vấn chuyên nghiệp miễn phí. Trong thời gian đại dịch, VACF đã liên kết dịch vụ viêm gan B và COVID–19, khuyến khích mọi người tiêm vắc xin COVID-19 và xét nghiệm viêm gan B cùng lúc. VACF đã vận dụng kinh nghiệm tiêm ngừa vắc xin đã có từ trước và rất ngạc nhiên là nhiều người sẵn sàng ‘bị chích” hai lần trong một ngày. 

Cô có thể cho tôi biết về cộng đồng mà VACF phục vụ không? 

VACF tập trung vào cộng đồng người Mỹ gốc Việt tại Quận Cam. Cộng đồng này bao gồm người nhập cư và người tị nạn. Vẫn còn rất nhiều định kiến xung quanh bệnh viêm gan B trong cộng đồng người Việt ở đây. Nhiều người vẫn tin rằng họ có thể bị nhiễm viêm gan B khi ăn chung với người bị dương tính. Trong cộng đồng người Việt có câu: “Quét nhà thì ra rác”, đây là một thành ngữ lảng tránh, ví dụ như nếu không đi khám bác sĩ, thì sẽ không biết mình bị bệnh. Về mặt văn hoá, thì thường chỉ chia sẻ những điều tốt đẹp. Còn có sự thành kiến xoay quanh việc tìm kiếm sự giúp đỡ. Vì vậy thường không nên chia sẻ về việc  bản thân đang gặp khó khăn hoặc bộc lộ sự yếu đuối, điều này có thể khiến người ta chìm đắm trong nỗi đau của bản thân.  

Ngoài sự thành kiến, nhiều người còn phải đối mặt với các vấn đề sức khoẻ tinh thần không được chẩn đoán và nhiều khó khăn khi chuyển đến một đất nước mới. Trong cộng đồng, tỷ lệ người có bảo hiểm cũng thấp hơn, dẫn đến việc nhận dịch vụ chăm sóc y tế định kỳ trở nên khó khăn. Cộng đồng người Á Châu cũng phải đối mặt với quan niệm sai lầm về thiểu số mẫu mực, điều này có thể gây hại vì nhiều người cho rằng người Châu Á có bằng cấp cao và thu nhập ổn định, điều này không phải lúc nào cũng đúng.  

Nhiều người VACF giúp đỡ chỉ nói một ít tiếng Anh hoặc hoàn toàn không nói tiếng Anh. Khi những người này đến nước Mỹ, họ cần tìm việc làm ngay và thường bị xếp vào nhóm lao động tay nghề thấp. Rất khó để những người nhập cư và tị nạn mới này có thể thăng tiến. Tuy nhiên, nhiều người vẫn có được động lực làm việc bằng cách tạo ra những cơ hội tốt hơn cho gia đình và con cái họ. 

Một số thách thức VACF gặp phải trong việc giải quyết các mối lo ngại về sức khoẻ của cộng đồng là gì? 

Các thử thách lớn nhất là thành kiến đối với bệnh tật và việc có được tài liệu thích hợp về mặt văn hoá và ngôn ngữ. Ngôn ngữ rất phức tạp. Các làn sóng nhập cư khác nhau ảnh hưởng đến cách giao tiếp với mọi người vì ngôn ngữ thay đổi theo thời gian, do đó việc tìm kiếm sự cân bằng giữa ngôn từ cũ và mới hơn là rất quan trọng. Đây tiếp tục là một quá trình học hỏi đối với tôi vì tôi ngày càng tiếp xúc nhiều hơn với mọi người trong cộng đồng. Việc đối phó với thành kiến và rào cản về ngôn ngữ và văn hoá là quan trọng và khó khăn, nhưng đó cũng là phần đáng quý nhất trong công việc này. 

Tại sao cô nghĩ rằng tài liệu tham khảo về bệnh viêm gan B và ung thư gan lại rất quan trọng cho cộng đồng của cô? 

Có được các tài liệu là điều quan trọng vì tri thức là sức mạnh. Chìa khoá để làm tốt hơn là sự hiểu biết và kiến thức đến từ việc học hỏi. Mọi người sẽ không biết điều gì là tốt nhất cho mình nếu họ không có đủ thông tin, điều này cần được củng cố thông qua việc lặp đi lặp lại nhiều lần. Nếu mọi người làm việc gì đó mà không hiểu tại sao phải làm vậy thì hành vi đó sẽ không kéo dài. Nhưng nếu họ hiểu, họ có thể tiếp tục những hành vi đó và giúp truyền bá thông tin đến những người khác. 

Kinh nghiệm của cô trong việc thực hiện các nhóm thảo luận và phục vụ trong ban cố vấn để cung cấp thông tin về chiến dịch Learn the Link là gì? 

Tôi đã có mặt để hỗ trợ và quan sát nhóm thảo luận. Tôi nhớ là các thành viên cộng đồng đã tham gia rất tích cực. Họ có kinh nghiệm cá nhân về bệnh viêm gan, điều này giúp họ có động lực để tham gia nhiệt tình hơn. Đó là một không gian an toàn để họ đóng góp ý kiến. Việc trở thành một phần của quá trình này đã mang lại sức mạnh cho họ và khiến họ cảm thấy được lắng nghe. Nỗ lực của dự án này là nhằm tạo ra các tài liệu phù hợp về mặt văn hoá và tìm kiếm phản hồi từ cộng đồng, qua đó làm mọi người cảm thấy như họ đã đóng góp cho một điều gì đó quan trọng và có ý nghĩa. 

Khi phục vụ trong ban cố vấn, tôi nhớ rằng nhóm chúng tôi đã được tập hợp lại từ nhiều cộng đồng khác nhau và chúng tôi đã đưa ra những suy nghĩ và phản hồi về dự án. Tôi đã có cơ hội được nghe những nhu cầu, lo ngại, và ý kiến phản hồi từ những cộng đồng mà VACF thường không làm việc chung. Tôi nhận ra rằng có nhiều điểm tương đồng giữa các cộng đồng khác nhau và thật hữu ích khi có cơ hội tìm hiểu thêm về các cộng đồng khác. Nhìn thấy mọi người đưa ra quan điểm của họ và lắng nghe những điểm tương đồng cũng như đặc trưng là một trải nghiệm thú vị. 

Tại sao việc các tổ chức phải nói chuyện trực tiếp với các thành viên cộng đồng khi tạo ra các chiến dịch như “Learn the Link” là quan trọng?  

Tập trung vào cộng đồng là điều quan trọng đối với bất kỳ chiến dịch hoặc hoạt động nào. Để giúp đỡ cho cộng đồng, chúng ta phải lắng nghe họ. Chúng ta không muốn tạo ra thứ gì đó mà chúng ta cho là tốt nhất nhưng lại không phù hợp với những người mà lẽ ra nó phải phù hợp với. Sự kết nối và mối quan hệ trực tiếp mang đến cho các thành viên cộng đồng một cảm giác thoải mái khi chia sẻ ý kiến là chìa khoá để thành công trong việc tiếp cận và nâng cao nhận thức. 

Cách hiệu quả nhất để các tổ chức tương tác với cộng đồng của cô là gì? 

Cách hiệu quả nhất để tương tác với cộng đồng là gặp gỡ họ ở những nơi họ thường lui tới. Sẵn sàng đi ra ngoài và tìm kiếm các thành viên cộng đồng, và cởi mở để hiểu biết nhu cầu cũng như nỗi lo của họ là điều quan trọng. Chúng ta không thể chỉ làm việc trong khung giờ bình thường từ 9 giờ sáng đến 5 giờ chiều, mà phải ra ngoài và tìm hiểu cộng đồng ở ngoài giờ làm việc thông thường. VACF cố gắng linh hoạt trong giờ giấc để gặp gỡ các thành viên cộng đồng, tổ chức các buổi họp mặt vào cuối tuần, ở chùa hoặc công viên. Chúng tôi cố gắng lắng nghe, thấu hiểu và xây dựng mối quan hệ bền vững. 

Hiểu được sự khác biệt về văn hoá và giữa các thế hệ cũng rất quan trọng. Đặc biệt đối với người Việt, lời truyền miệng có sức mạnh rất lớn. Thông tin lan truyền trong cộng đồng thông qua việc truyền miệng có thể lan truyền như cháy rừng. 

Kết nối với các nhà lãnh đạo cộng đồng, những người và tổ chức đang làm việc trực tiếp với cộng đồng là một cách khác để kết nối với mọi người. Điều này bắt nguồn từ hoàn cảnh nhập cư và tị nạn; những người trải qua chiến tranh có thể khó tin tưởng hơn vào các cơ quan chính quyền nhưng lại tin tưởng vào những người mà họ đã xây dựng mối quan hệ tốt với. 

Cô có suy nghĩ hoặc nhận xét nào khác về chiến dịch “Learn the Link” và tiềm năng của nó trong việc cải thiện các hoạt động chăm sóc sức khoẻ của người dân trong cộng đồng của cô không? Có tài liệu nào khác mà cô hy vọng sẽ thấy trong tương lai không?  

Tôi đã xem qua các tài liệu khi chúng được phổ biến và đã chia sẻ tài liệu cho một nhân viên mới xem, và tôi thấy rằng tất cả các tài liệu đều bằng tiếng Anh. Khi tất cả các bản dịch đều có sẵn, sẽ thật tuyệt khi có thể chia sẻ không chỉ với cộng đồng mà còn với những người làm việc với cộng đồng nữa. Viêm gan B có thể không phải ưu tiên hàng đầu của mọi người, nhưng với sự quảng bá, những tài liệu này có thể nhắc nhở mọi người rằng kẻ giết người thầm lặng này vẫn tồn tại và có sẵn các nguồn hỗ trợ khi họ cần đến. 

Kinh nghiệm của cô trong việc giúp đánh giá và chỉnh sửa một trong những bản thảo khoa học cuối trước khi nó được gửi đi để xuất bản từ dự án này là gì? 

Có rất nhiều thông tin để đọc! Việc tham dự các buổi họp cố vấn, tham dự các nhóm thảo luận, và đọc bản thảo đã được chia ra thực hiện trong một khoảng thời gian dài. Rất thú vị khi được đọc bản tóm tắt tất cả những công việc đã được hoàn tất. Đó là một cơ hội tốt để ôn lại kiến thức và tôi cũng thích đọc những câu trích dẫn đã để lại cho bản thân mình ấn tượng sâu sắc. Các cộng đồng khác có nhiều điểm chung với cộng đồng người Việt, cho nên rất tuyệt khi được hợp tác cùng nhau vì tất cả chúng ta đều cùng đang cùng làm công việc ý nghĩa này.  

Click here to read the original blog post in English.

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

Nargis Speaks about Living with Hepatitis Delta

The hepatitis delta virus is a sub-virus of hepatitis B that depends on the hepatitis B virus to survive and reproduce. Hepatitis delta affects between 5% and 10% of people living with hepatitis B, and can quickly progress to a more serious and advanced liver disease than HBV alone. Since 2016, the Hepatitis B Foundation has coordinated a program called Hepatitis Delta Connect, which works to raise awareness of hepatitis delta; promote screening, research, and management of the virus; and provide support to individuals living with and affected by the disease. This includes capturing the lived experiences of hep D. This month, Ariana, an intern at the Hepatitis B Foundation, interviewed Nargis, a resident of New York, who is living with hep B and hep D, about her experiences of the viruses, from diagnosis to management. We thank Nargis for sharing her story!

Ariana: Thank you very much for joining today! When were you initially diagnosed with hepatitis delta?

Nargis: I was diagnosed in 2005. I did my blood work at the end of 2005 and got my result at the beginning of 2006. The reason why I went to do the blood work is because I had very severe flu-like symptoms.

Ariana: How did you find out you were living with hepatitis delta?

Nargis: I was out of the city for a trip, and felt sick after, so I immediately returned to the city and did blood work and found that it’s hepatitis D. I was surprised because I know if you don’t have hepatitis B, hepatitis D would never exist in your body. 

Ariana: How did you initially feel about it?  

Nargis: To be honest, I was depressed. It happened during the best time of my life when my career was at a high point, and I’m feeling like I’m enjoying life and everything is fine. All the difficulties in my life were gone. During that time, I was at the top of the level of my career and I could do something for myself and for my family. And I had big plans, and when I was diagnosed with hepatitis B, all my plans just collapsed. My doctor just straight up told me that I’m lucky to have Hepatitis B and D, not C. They did not give me any kind of psychological support, and I was extremely depressed. Thank God for my family and my husband for being there to support me always.

I’m originally from Dushanbe, Tajikistan. It’s a small country in central Asia. Unfortunately we don’t have enough good medicine to help with this kind of thing, as the government is not supporting nor providing any kind of medication. The medication I needed had to be ordered from Russia to bring here, and was very expensive. The prices go up and down. And, this one is also not guaranteed to work. I got interferon, but it didn’t work for me. After one month of injections, I got very, very sick. And the doctor decided to stop it. 

Ariana: How do you think this disease has impacted your physical state?  

Nargis: Mostly it’s the mental changes when you are becoming depressed, but when you’re starting the treatment, you feel so weak. I had severe weakness, fatigue. I also had GI (gastrointestinal) problems as well.

You get kind of the nausea, no vomiting, just the nauseous feeling. But in the morning, you are feeling fatigued. You are always the one to sleep and have joint pain. Now I’m just feeling kind of the joint pain, but when I’m starting to work or do some activity, I get tired. I always feel the fatigue, you know, or the fatigue sometimes is so much, I don’t want to even do anything, but I always push to do things I should do. I often get bad pain.

But I’m always appreciative, you know, as I am still alive, and I have to thank my family for that.

Thank God. My third daughter was checked for hepatitis B and D too. Thank God, she got her vaccination, which is making us happy. Now I have four kids, and I’m calling my fourth child my miracle child, she gives me so much happiness. 

And all of them, all my kids are free from hepatitis B. They got all the vaccinations, my husband as well. And routine family life and my job are like keeping me in the life, making me happy, and I’m not thinking so much about my hepatitis. Thank God, I have my arms, my legs and I can eat, I can walk, I can see. This is more than enough to keep me happy.  

Ariana: Why is raising awareness of hepatitis delta important? 

Nargis: It’s important for people to know about it and I’m talking about my experience. I didn’t catch it from receiving medical care in my country, but a lot of people don’t know about this one and, if you don’t know, you don’t pay attention. We must be careful with  needles [which can possibly transmit hepatitis delta].

It is important to make information booklets, allowing patients to talk about their experiences, finding people similar to us, and we are people, we still have this disease, but we are very active, we can work, we can sing, do something good. 

It is better if you support each other as well, every person is important in this life, every person can be very important for somebody else.

People must know. If you’re somebody who doesn’t have education, maybe there’s some pictures with a simple explanation to tell them. It really works because, when HIV and AIDS existed in this world last century, the people didn’t know so much about it. And when the other foundations and the people and mass media started to get to work and explain, and gave out the information booklet, people are starting to pay attention now. And I’m thinking this can work for hepatitis as well.  

Ariana: What do you wish more people knew about this disease? 

Nargis: It’s hard to always be healthy. I wish for everybody to be healthy, but it’s now hard to be healthy, because you never know where you can catch hepatitis…And just so I can wish for people to keep their eyes open and not be afraid.

Keep your eyes open. Where are you going? What are you eating? Which kind of medical offices are you going to? If you have the blood transfusion, using the needles or something, or some kind of tools used for dental procedures, just to make sure all of them, they’re sterilized and clean. 

Be open mentally and healthy. It will help you in this kind of situation as well. You know, talk with somebody if you can talk with some of your family members or with people from outside. I’m an open person, and for me, it’s very, very helpful.

Also, Dr. Kushner invites me to Zoom classes where I hear about the Hepatitis B Foundation, the kind of research you have, what the people around the world are trying to do and how to help patients. It’s given me support. It’s given me kind of the hope that not everything is lost and I believe that some medication will be invented soon in the world to help the millions of people with hepatitis B and D. 

Ariana: What resources do you think you would have wanted initially when you got diagnosed with hepatitis delta?  

Nargis: Getting the right medication for people is very important. Insurance companies should help the patient to get the right medication. And also, I’ve been in a research study and the first research study I got is a medication for hepatitis B and D. The doctor teams are working specifically with this kind of patient when the patient goes to the hospital and does the blood work to see the level of the hepatitis B and D and also the liver enzymes. 

Also patients are depressed and always need some support group, maybe some social workers can closely work with people who have hepatitis B and D.

Ariana: Do you think there’s anything else you would like to share about your experience? 

Nargis: I would like to tell the people who have hepatitis B and D, do not be afraid. The doctors are working, and the research team is working hard. We’re not alone in this world. The Hepatitis B Foundation and many others are working on this problem. Do not lose hope. Be powerful, be happy, thank God we are alive, and support each other.

Ariana: Awesome. Thank you so much for sharing your insight and experiences with us today!

300 Million Reasons, About Hepatitis B, advocacy, HBV, Hepatitis Awareness Month, Hepatitis B Advocacy, Hepatitis B Awareness, Liver, Liver Health, Living with Hepatitis B, United States

#justB Storyteller David’s Advocacy Journey

 

 

 

 

 

 

 

 

 

 

David is living with hepatitis B, and he spoke about empathy and mental health as a panelist at the World Hepatitis Summit (WHS) 2024

Another World Hepatitis Summit (WHS) has come and gone, this time in Lisbon, Portugal. I previously attended the 2022 summit in Geneva and spoke during the Youth Can’t-Wait and Closing Sessions. I would like to give my thanks to the wonderful people at the World Hepatitis Alliance, for allowing me to travel and speak at this year’s summit as well.  

I spoke during a newly created session called Hepatitis and Mental Health. During this session, a video I made in collaboration with the WHA last year, was played before I spoke. It is part of the WHA “I can’t wait” series of videos, which showcase patient advocates and their journeys with patient advocacy and why they can’t wait for a world without hepatitis. I, the dedicated and powerful Shabana Begum of the UK, and the courageous and vocal Shaibu Issa of Tanzania are the first to be featured in these videos.  

I can’t wait… these words evoke dire urgency. During this summit, I felt and heard the urgency from many of the speakers, advocates, and attendees. From the opening session, it was emphasized that the world DOES have the tools and resources but DOES NOT have the required amount of political and social will to eliminate viral hepatitis by 2030. The need for person-centered and culturally appropriate approaches as being critically important was also highlighted.  

These declarations capture the moment the viral hepatitis community is currently in. Time is slipping away by the day and the people who suffer from viral hepatitis, hepatitis B and D included, cannot continue to wait in silence as they have been. Deaths from hepatitis B are still alarmingly high each year. These statistics highlight a problem of stigma and discrimination that presents differently depending on where you are located or who you are talking to. Stigma and discrimination can cause mental health problems and prevent millions of people living with hepatitis from finding their voice, feeling comfortable sharing their story, and being diagnosed. Without solving this multi-faceted problem, the goal of eliminating viral hepatitis by 2030 is just an empty platitude. 

Having the privilege and platform to speak about hepatitis and mental health during this summit was very important to me. My struggles with hepatitis B and my mental health struggles are interconnected in so many ways. That is also true for so many other patients who have struggled with poor mental health. Long before I started my patient advocacy journey, I felt voiceless. Long before I ever talked publicly about my mental health struggles, I felt voiceless.  

Empathy is a crucial piece of the puzzle for how we give those who feel voiceless the greatest opportunity to find their voice, regardless of where they are from or the stigmas that surround them. We must be empathetic when creating policies, action plans, and declarations. So many millions of people are left undiagnosed, untreated, and voiceless because of fear of the societal, associative, and personal stigma that they will go through if they seek out a diagnosis or talk about their status openly. There is still so much misinformation surrounding hepatitis and the only feasible way to fight this is by amplifying the voices of those who speak the truth about hepatitis with empathy, cultural sensitivity and appropriate.  

The symptoms of poor mental health exacerbate this feeling of voicelessness. After five years of advocacy, over a decade of therapy, and five years of being on a consistent treatment for my hepatitis B, I still struggle with clinical depression and anxiety. I will live every day with depression and anxiety in varying degrees for the foreseeable future. My mental health started to trend downward late last year. I had to find the strength to start an antidepressant medication and give it an honest try. I can happily say, that today and every day after will mark the longest I’ve been on an antidepressant (almost six months now), and I can report that it is helping me manage my mental health and to continue managing my hepatitis.  

I say all of this to highlight the connection between times in my life where I have actively been taking steps to manage my mental health and my hepatitis B. These periods overlap with each other, and they have one important thing in common. Empathy for myself and others. This is one of the strongest coping tools I have to manage my hepatitis B and my mental health. Patient health outcomes are linked to the state of their mental health and the tools and resources they are given to help manage it.  

After attending this World Hepatitis Summit, I feel a calling to act with more urgency. This isn’t an easy task. For me, it’s one of the most challenging aspects of advocacy. I have such a natural tendency to self-talk in very judgmental and negative terms. I sometimes think I’m a terrible person for not doing more and taking more time to learn how to become a more capable and productive advocate. I ask myself why I’m not having more conversations, learning about others’ perspectives, and potentially teaching someone or setting them on a path of changing their minds about hepatitis and mental health.

The desire to grow more as an advocate and connect more with others is within me, but the key to taking more action is to meet myself where I am currently and to practice self-empathy. When I speak to myself with empathy, kindness, and encouragement, I am much more likely to grow and make a positive change, even though mental health struggles.   

Most people in the world can relate to or know someone who has struggled with their mental health. This commonality between people can be a powerful tool if wielded with empathy instead of fearmongering and focusing on the most rare, violent, and negative aspects of mental health struggles. These stories fill the public, media, social media, and political discourse and create more layers of stigma (public, associative, self, provider). Changing this narrative will be a monumental undertaking but to use one of my favorite quotes, “The best time to start was yesterday. The next best time is today.” 

 

Check out David’s storytelling journey here: https://www.hepbstories.org/justb/david?rq=david

 

HBV, Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Health, Living with Hepatitis B

You Cannot Live Without Your Liver: Celebrating World Liver Day

What is your body’s largest internal organ that filters and extracts toxins from your blood and can even regenerate on its own?  

The liver! 

Although the liver may not be discussed as frequently as the brain or heart, the liver is an incredibly critical part of everyday life and plays a role in metabolism, digestion, immunity, and overall keeping the body healthy. On April 19th we celebrate World Liver Day and honor everything it does for our bodies. Just some of the liver’s major roles include the production of bile (which helps break down fats during digestion), detoxification of the blood supply, and storage of essential vitamins (Kalra et al., 2023). The complex involvement of the liver in all these functions means that any injury or damage can cause a cascade of negative consequences. That being said, there are many useful preventative and curative measures that people can utilize to heal the liver. In this post, we gained insight from liver experts, clinicians, and people with lived experience to highlight the good, the bad, and the healthy for all things liver! 

Liver Disease 

So, what exactly causes someone to get a liver disease?  

It all boils down to tissue damage which can be caused by viral infections, excessive alcohol consumption and fat intake, autoimmune disease, and more. 

Viral infections 

Of course, one of the most common diseases that affects the liver is hepatitis in all its forms. Hepatitis translates to inflammation of the liver, which can be caused by viral infections, excessive alcohol consumption, or autoimmune diseases. Regarding viral infections there are five different hepatitis viruses (A, B, C, D, and E) that can damage the liver. Dr. Su Wang, Senior Advisor for Global Health for the Hepatitis B Foundation and health care provider, explains the mechanism for viral liver damage. 

“The virus resides and replicates in the liver and over time can cause chronic inflammation which can lead to fibrosis [mild scarring] and even progress to cirrhosis [severe scarring] and liver cancer.” 

Dr. Robert Gish, hepatologist and Medical Director for the Hepatitis B Foundation, highlights how the different viruses affect the liver. 

“Hepatitis A only causes acute infections, meaning the body can recover eventually, whereas hepatitis B, C, D, and E can cause chronic infections that are more likely to lead to long-term damage if not managed.” 

The immune response from liver cells while trying to protect against hepatitis virus can lead to long term inflammation and damage of cells. This causes fibrous connective tissue to develop within the organ as a response to injury and is often one of the first steps towards liver disease.  

Alcohol and Diet 

Excessive fibrosis development and scarring of the liver can lead to a disease called cirrhosis which can also come from excessive alcohol consumption. Since your liver filters toxins out of the blood, the process of filtering alcohol out of the blood causes injury and cell death. Read more about alcohol’s effect on the liver in this blog post.  

Another common method of liver damage is through dietary fat deposits that accumulate in the liver referred to as steatosis. This can lead to diseases known as metabolic-associated steatotic liver disease (MASLD), alcoholic steatotic liver disease (MetALD), and metabolic-associated steatohepatitis (MASH). Wayne Eskridge, CEO of the Fatty Liver Foundation explains more about these common liver diseases and how to recognize their presence. 

“Metabolic-associated steatotic liver disease (MASLD) is the new term for nonalcoholic fatty liver disease (NAFLD). It is characterized by excess fat in the liver not caused by excessive alcohol consumption. 

Alcoholic-associated steatotic liver disease (MetALD) is the new term for what was previously known as alcoholic fatty liver disease (AFLD). It is caused by heavy alcohol use. 

The stages of MASLD are as follows: 

  1. Simple steatosis – Fat accumulation in the liver, but no inflammation or damage to liver cells. 
  2. Metabolic associated steatohepatitis (MASH) – Inflammation and damage to liver cells, along with fat accumulation. MASH can lead to cirrhosis and liver failure. 
  3. Cirrhosis – Scarring of the liver due to chronic inflammation and damage. Cirrhosis can lead to liver failure and other complications, such as portal hypertension (high blood pressure in the portal vein) and ascites (fluid buildup in the abdomen).” 

MASLD and MetALD are becoming more common in the general population, particularly MASLD, likely becasue of the increasing prevalence of obesity, diabetes due to a sedentary lifestyle, and eating diets that are high in processed foods, sugary drinks, and unhealthy fats that can promote liver fat accumulation. 

Less Common Conditions 

In addition to the more common liver diseases, there are some lesser-known conditions that are genetic and autoimmune. Wayne discusses four that he identifies as important for people to know. 

Primary Biliary Cholangitis (PBC) – A chronic autoimmune disease that affects the bile ducts in the liver, leading to inflammation and damage 

Autoimmune hepatitis – This is a chronic inflammatory condition where the immune system attacks the liver, leading to liver inflammation and damage 

Hemochromatosis – This is a genetic disorder where the body absorbs too much iron, leading to iron overload in the liver and other organs (Read blog post about hemochromatosis here) 

Wilson’s Disease – A rare inherited disorder that causes copper to accumulate in the liver, brain, and other vital organs 

All liver diseases mentioned in this section can cause excessive stress and changes to the liver tissue, which can lead to liver cancer development. It is important to note though, that fibrosis is reversible and there are things you can do to maintain your liver health to avoid advanced disease. 

Healing the Liver 

The liver can be negatively affected in many ways, but the good news is that the liver is an incredibly resilient organ and there are many ways to heal the liver.  

Treatment 

Clinicians and patients agree, the most important step to healing the liver from a viral infection is treatment. Dr. Gish states that for hepatitis C, “cure with direct-acting antivirals is the first step” and hepatitis C lived experience expert, Courtney Downs, agrees:  

“To heal your liver while living with hepatitis C, prompt treatment is key. Early treatment enhances a person’s overall health and leads to numerous benefits such as: improved quality of life, decreased chances of exposing others, regression of liver fibrosis and a reduction in the risk of liver failure and liver cancer – hepatocellular carcinoma (HCC)” 

Although there is not a cure for hepatitis B like there is for hepatitis C, there are many available and accessible treatments for hepatitis B that can stop viral replication and liver damage. Learn more about available hepatitis B treatment options here. 

Dr. Wang highlights additional management considerations including asking for lab tests to measure “viral load and liver enzymes at least once a year if not more often” and recommends having discussions with your healthcare provider. “You want to ask about liver cancer screening as well and have an Alpha Fetoprotein (AFP) test and ultrasound ordered”. These steps will help to monitor the liver status and prevent progression of liver damage to irreversible stages of cirrhosis and cancer. 

In terms of fatty liver diseases, there may be medications that can be prescribed to reduce liver fat or improve liver function and in severe cases, a liver transplant may be necessary. 

Lifestyle 

There are a few lifestyle changes that all people can make to reduce the negative effects of liver disease and overall improve liver health regardless of disease status, recommended by Mr. Eskridge and Dr. Gish: 

  1. Limiting Alcohol Consumption – Alcohol use at any level can put greater stress on the liver. Rethink the drink! 
  2. Dietary Changes – Focus on fruits, vegetables, whole grains, unsaturated fats, and lean protein. Limit processed foods, sugary drinks, and saturated or trans fats. 
  3. Increasing Exercise – Aim for at least 150 minutes of moderate-intensity exercise per week. 

Courtney provides her insight as someone with experience living with a liver disease. 

“The liver has the unique capacity to regenerate once no more virus is detected and if no new damage occurs. Optimal nutrition and alcohol avoidance are vital. If abstinence isn’t feasible, reducing alcohol and consuming lean protein can aid liver repair. Also, getting vaccinated against hepatitis A and B is very important to protect your liver.” 

There are safe and effective vaccines to prevent hepatitis A and B infections. This is an easy step to protect your liver from future damage and prevent simultaneous liver disease while the liver is in a weakened state. Learn more about the hepatitis B vaccine here. 

Field experts interviewed for this post highlighted their favorite fact about the liver and why World Liver Day is important to them: 

 

 

 

 

Dr. Robert Gish 

“You cannot live without your liver.” 

“Raising awareness will change human behavior and lead to better liver health.” 

 

 

 

 

Dr. Su Wang 

“The liver can regenerate, and fibrosis can be reversible. It is such an important organ and makes almost all the important proteins in our body but also detoxifies.” 

“The liver is an organ that doesn’t get enough attention given its importance and because of that, liver diseases are often neglected. Thus, this day is even more important to increase awareness and promote liver health.” 

 

 

 

 

Wayne Eskridge 

“Education is the only real answer to stemming the tide of this disease (MASLD/MetALD/MASH). Drug therapy is not sustainable on a population basis so people must learn to develop better habits.” 

Hepatitis C lived experience expert, Courtney, expressed advice for anyone living with hepatitis C or other liver diseases: 

 

 

 

 

Courtney Downs 

“You are not alone. There is a whole community of individuals that have cured or cleared their hepatitis C. There are clinicians, support staff, advocates, coalitions, and organizations that consist of some of the most amazing people I have ever met personally and/or professionally. They work tirelessly advocating to remove barriers and challenge the stigma that surrounds viral hepatitis. They don’t judge and they truly embrace radical love and acceptance. There is a cure and there are people who will help you get that cure no matter what your circumstances are. So, my advice would be to get tested, get treated, and get vaccinated.” 

Courtney said it best. Celebrate World Liver Day on April 19th and every day.

Get tested/treated/vaccinated today! 

 

References:  

Kalra A, Yetiskul E, Wehrle CJ, et al. Physiology, Liver. [Updated 2023 May 1]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2024 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK535438/ 

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Health, Living with Hepatitis B, United States

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/ 

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

Baruch S. Blumberg Institute