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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)

July 25, 2024 hepbtalk

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.

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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

April 16, 2024 hepbtalk

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:

Simple steatosis – Fat accumulation in the liver, but no inflammation or damage to liver cells.
Metabolic associated steatohepatitis (MASH) – Inflammation and damage to liver cells, along with fat accumulation. MASH can lead to cirrhosis and liver failure.
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:

Limiting Alcohol Consumption – Alcohol use at any level can put greater stress on the liver. Rethink the drink!
Dietary Changes – Focus on fruits, vegetables, whole grains, unsaturated fats, and lean protein. Limit processed foods, sugary drinks, and saturated or trans fats.
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

March 1, 2024 hepbtalk

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 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

October 25, 2023 hepbtalk

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

300 Million Reasons, About Hepatitis B, HBV, Hepatitis B Awareness, Hepatitis B Diagnosis & Monitoring, Hepatocellular Carcinoma, Liver, Liver Cancer, Liver Cancer Awareness Month, Living with Hepatitis B

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

October 12, 2022 hepbtalk

The Scenario

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

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

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

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

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

The Challenge

Cultural Perceptions on Health & Well-being

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

Hep B and Liver Cancer

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

Liver Cancer is a Silent Disease

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

What can you do?

Get tested!

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

Get screened!

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

Get educated!

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

References

Clinical Trials, Hepatocellular Carcinoma, Liver Cancer

Announcing New Liver Cancer Clinical Trials

July 7, 2021 hepbtalk

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

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

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

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

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

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

References

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

The Scenario

The Challenge

What can you do?

References

Baruch S. Blumberg Institute