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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.  

Hepatitis B Foundation Introduces 300 Million Reasons Movement

By Beatrice Zovich

The Hepatitis B Foundation is excited to launch a new movement called 300 Million Reasons, named for the almost 300 million people worldwide who are living with hepatitis B. The goal of this movement is to improve awareness about hepatitis B and liver cancer worldwide, to promote engagement of key stakeholders, and to empower people impacted by hepatitis B across the globe to become vocal advocates. We want to amplify the voices and stories of the millions of people directly affected by this disease, in order to make sure that hepatitis B is granted the funding, attention, and serious consideration that it deserves. The 300 Million Reasons movement will be officially launched in July of 2021, in time for World Hepatitis Day, but we wanted to begin sharing resources and information now. 

This movement is divided into four branches: B Informed, B Connected, B the Voice, and B the Change. Each of these arms is described below. 

B Informed

Hepatitis B can be prevented, treated, and managed. The B Informed branch of the 300 Million Reasons movement involves raising awareness about hepatitis B and liver cancer, providing accurate information, dispelling myths and misconceptions, decreasing stigma and discrimination, and providing simple hepatitis B educational tools, which will focus on transmission, prevention, liver cancer screening, and living with chronic hepatitis B. We have created a free and downloadable social media toolkit that can help spread the word about statistics, vaccines, testing, monitoring and care, symptoms, blood tests, acute vs. chronic hepatitis B and more. Check it out today! 

B Connected

You are not alone! The B Connected arm of 300 Million Reasons works to increase access to clinical trials, expand global connections to support people living with hepatitis B and their loved ones around the world, establish international peer mentoring programs, and create a social network and further community engagement opportunities for people impacted by hepatitis B. This branch of the movement will be modeled after current coalition work that has been done with Hep B United and the Coalition Against Hepatitis in People of African Origin

B the Voice

Your voice matters! The B the Voice component of the 300 Million Reasons movement is focused primarily on international storytelling and elevating the voices of those living with and affected by hepatitis B around the world. Stories of discrimination, stigma, screening, diagnosis, treatment, supporting community and family members, personal and larger-scale successes, setbacks and victories – all are important to share and learn about in order to raise awareness, inspire change, and eventually find a cure. Do you have a story to share? We would love to read it! Share your story today using this link

B the Change

Stand up, speak out! B the Change aims to increase activism among those living with hepatitis B and their loved ones and to use this as a tool to advance the cause of increasing knowledge about and support for hepatitis B among legislators and policy-makers. It will include national and international community ambassadors, strong relationships with the World Hepatitis Alliance and other key partners, outreach to people living with hepatitis B who have not had prior involvement in this effort, and advocacy training and opportunities. With knowledge can come action – let’s build a strong communication network to spread the word and B the Change to create a world that is Hep B-free! Become a hep B advocate today by joining our Action Center

The 300 Million Reasons movement will continue to grow and expand over the coming months and years, as more materials and resources are developed and disseminated. We hope you will continue to stay tuned on our website for updates and that you will join us in taking steps toward shining a light upon, and eventually eliminating, hepatitis B! Join the movement today!

Vlog: Why is the Hep B United Summit Important?

Join Michaela Jackson for A Day in the Life of a Public Health Coordinator to learn about why the annual Hep B United Summit is important!

In this episode, some of the Hep B United coalition partners explain why some of the leaders in the hepatitis B world gather in Washington D.C. each year. The Summit took place from July 24th – July 26th, 2018.

Recently Diagnosed with Hepatitis B? Getting Through the Next Months Waiting to Confirm if Your Infection is Acute or Chronic

Have you recently been told you have hepatitis B?  Dealing with the diagnosis and waiting out the next six months to determine if your infection will resolve itself or learning that it is a chronic infection can be nerve-wracking.

Fortunately, greater than 90 percent of healthy adults who are newly infected will clear or resolve an acute hepatitis B infection.  On the hand, greater than 90% of babies and up to 50% of children infected with hepatitis B will have lifelong, chronic infection. Sometimes people are surprised to learn they have a chronic infection. It can be confusing since there are typically few or no symptoms for decades. If a person continues to test hepatitis B positive for longer than 6 months, then it is considered a chronic infection. Repeat testing is the only way to know for sure.

Acute hepatitis B patients rarely require hospitalization, or even medication.  If you are symptomatic, (some symptoms include jaundice, dark urine, abdominal pain, fever, general malaise)  you may be anxiously conferring with your doctor, but if you are asymptomatic, you might not feel compelled to take the diagnosis seriously.  Ignoring your diagnosis can be very serious. If you have concerning symptoms like jaundice (yellow eyes and skin), a bloated abdomen or severe nausea and vomiting, please see your doctor immediately. Your doctor will be monitoring your blood work over the next few months to see if you clear the virus, or monitoring your liver if there are concerning symptoms.

Your job is to start loving your liver …today.  STOP drinking alcoholic beverages.  Refrain from smoking cigarettes.  Your liver is a non-complaining organ, but you cannot live without it.  Make your diet liver-friendly and healthy filled with a rainbow of vegetables and fruits, whole grains, fish and lean meats. Minimize processed foods, saturated fats and sugar.  Drink plenty of water.

Talk to your doctor before taking prescription medications, herbal remedies, supplements or over-the-counter drugs.  Some can be dangerous to a liver that is battling hepatitis B.  Get plenty of rest, and exercise if you are able.

Don’t forget that you are infectious during this time, and that loved ones, sexual partners and household contacts should be tested to see if they need to be vaccinated to protect against hepatitis B.  Sometimes family members or close household contacts may find that they have a current infection or have recovered from a past HBV infection.  If anyone fears exposure, ensure them that hepatitis B is not transmitted casually. They should get tested, and vaccinated if needed, and take simple precautions. Remind them that 1/3 of the world’s population will be infected with the hepatitis B virus during their lifetime.

On the flip-side… Do not let this new hepatitis B diagnosis consume you.  As the weeks and months pass, you might find that the infection is not resolving, and you might worry that you have a chronic infection.  The associated stress and anxiety can be challenging, even overwhelming.  It can contribute to physical symptoms you may be experiencing.  Find a family member, friend, or health care professional with whom you can share your concerns.

If you are told you have recovered from an acute HBV infection (you are now HBsAg negative, HBcAb positive and HBsAb positive) be sure to get copies of your lab reports to ensure there are no mistakes. Compare them with our easy to use blood tests chart.   If something looks wrong, or if you’re confused, speak up and ask your doctor. Once confirmed, be sure to include hepatitis B as part of your personal health history. This is important in case you have conditions requiring treatment later in life that might once again warrant monitoring of your hepatitis B. It is possible for a past HBV  infection to reactivate if a person requires longterm immune suppressing drugs .

No one wants to learn they have chronic hepatitis B but it is a manageable disease. You’ll want to see a doctor with experience treating chronic HBV so they can run additional tests. There are very effective treatments available, though not everyone with chronic HBV needs treatment. All people living with chronic HBV benefit from regular monitoring since things can change with time. Please do not panic or ignore a chronic hepatitis B diagnosis. Take a deep breath and get started today learning more about your HBV infection and the health of your liver.  Things are going to be okay!

If you are confused about your diagnosis, please feel free to contact the Hepatitis B Foundation at info@hepb.org.

May is Hepatitis Awareness Month

Hepatitis Awareness Month is dedicated to increasing awareness of hepatitis in the United States and to encourage high risk populations to get tested. If you’re not sure how you can get involved in the hepatitis B community this month, here are some ways you can!

  • Share and spread hepatitis B knowledge. CDC’s Know Hepatitis B Campaign is a great resource to learn more about hepatitis B and to promote testing in your area! They also have great posters, handouts, and videos available in different languages including Spanish, Mandarin, Vietnamese, Korean, French, and more! You can also look for some of the Hepatitis B Foundation’s fact sheets and #justB storytelling campaign videos.
  • Join or organize a screening event. May 19th is National Hepatitis Testing Day! Organizations around the country will provide viral hepatitis screenings – both hep B and C! Be sure to look for some Hep B United partners’ websites for screenings in your local area, especially if you’re interested in volunteering.
  • Organize or join a flash mob to increase awareness! With our local hepatitis B campaign in Philadelphia, Hep B United Philadelphia, we held a “B A Hero Flash Mob” in the past. It is a great way to open the discussion about hepatitis B in an engaging and fun way!
  • Become an HBV advocate! You can join our Hep B United Action Center to get all the updates on our advocacy efforts. You can also share your hepatitis B knowledge on social media too!
  • Check out and share Hepatitis Victoria’s Little Hep B Hero book and animation. Hepatitis Victoria created an engaging book to explain hepatitis B to six to twelve-year-old children. Their book is available to order and in English, Simplified Chinese, and Vietnamese.
  • Join the #HepAware Thunderclap. You can easily share and show your support for CDC Hepatitis’s efforts by joining their Thunderclap by May 19th, Hepatitis Testing Day. You can use Facebook, a Facebook page you manage, Twitter, and Tumblr.
  • Join our international #HepBeLIeVER Social Media Contest. Not only will you be spreading hepatitis B awareness, but you can also get a chance to WIN a $50 AMAZON GIFTCARD and other Hepatitis B Foundation swag. All you have to do is take a picture loving your liver and upload it to Twitter, Instagram, or Facebook with #HepBeLIeVER. More information here.

There are endless possibilities to celebrate this month! If you need even more ideas, CDC has a plethora of resources available dedicated to Viral Hepatitis Awareness month. You can also check out our Hepatitis Awareness Month webinar from Hep B United, NASTAD, and CDC or Hep B United and NOHep’s webinar: The NOHep Fight for Elimination!

Journey to the Cure: What Programs are Available for People Living with Hepatitis B?

Welcome to “Journey to the Cure.” This is a web series that chronicles the progress at the Hepatitis B Foundation and Baruch S. Blumberg Institute towards finding the cure for hepatitis B.

In the second episode (part 2), Kristine Alarcon, MPH sits down with Chari Cohen, DrPH, MPH, Vice President of Public Health Programs of the Hepatitis B Foundation, to talk about public health research at the Hepatitis B Foundation.

For any questions about hepatitis B, please email info@hepb.org.

Disclaimer: The information provided in this audio post is not intended to serve as medical advice of endorsement of any product. The Hepatitis B Foundation strongly recommends each person discuss this information and their questions with a qualified health care provider.

Edited by:
Kristine Alarcon, MPH and Samantha Young

Music:
Modern – iMovie Library Collection

Script:

Welcome to Journey to the Cure! Every month, we’ll sit down with scientists from the Hepatitis B Foundation and the Baruch S. Blumberg Institute to talk to you about hepatitis B and efforts to find a cure for hepatitis B. There’s still a long way to go, but we’re here to walk you through our journey.

Kristine Alarcon, MPH:
In our last episode, Dr. Block was talking about how the Hep B Foundation is dedicated to public health research. Can you tell us more about that?

Chari Cohen, DrPH, MPH:
One of our major goals is to get everyone in the United States – or in the world really – but primarily in the US, everyone who has hepatitis B should be aware of their diagnosis and should be able to access to care. In order to do that, we have to do research. We have to figure out what are the best ways to get people tested and into care. In order to do that, we have to first figure out why people aren’t getting tested now, what barriers are people facing, what challenges are people facing to get tested, and how can we help them overcome those challenges. Every time we do a public health program, we are also doing research, so we are collecting a lot of data. And then, we use the data to develop new programs, and we share it with others as well. We also collect information and data on prevalence, so looking at where some of the high risk and highly impacted communities are in the U.S. We will do testing ourselves. We’ll go into communities in Philadelphia, and we’ll do hepatitis B testing. Through that, we know which communities need more care.

Kristine Alarcon, MPH:
What types of public health programs are you carrying out right now?

Chari Cohen, DrPH, MPH:
We have a number of different programs right now. One is our Hep B United Philadelphia program, where we like to train the trainers. In Philadelphia, we’re training people who do health education; we’re training community leaders; and we’re helping them to learn about hep B, so that that they can go into high risk communities and teach other people about hep B. We’re also screening a lot of people. This year, we screened a little over 200 people for hepatitis B. When we find people to be infected, we link them into care. We’re also working on a new project, looking at the challenges that African immigrants face in the US in terms of hepatitis B testing. We’re trying to figure out what are the best ways to overcome those challenges and what are the best ways to get people tested and into care. And then, we have our #justB program, which is our national patient storytelling program, where people who have hep B or with family members who have hep B tell their stories and make videos, and they share how hep B has impacted their lives.

Kristine Alarcon, MPH:
Thank you so much for joining us in this episode!

Chari Cohen, DrPH, MPH:
Thank you!

Journey to the Cure: What is the Future of the Hep B Cure? ft. Timothy Block, PhD

Welcome to “Journey to the Cure” This is a web series that chronicles the progress at the Hepatitis B Foundation and Baruch S. Blumberg Institute towards finding the cure for hepatitis B.

In the first episode (part 2), Kristine Alarcon, MPH sits down with Timothy Block, PhD, President and Co-Founder of the Hepatitis B Foundation, to talk about what a hepatitis B cure could look like in the future.

For any questions about hepatitis B, please email info@hepb.org

Disclaimer: The information provided in this audio post is not intended to serve as medical advice or endorsement of any product. The Hepatitis B Foundation strongly recommends each person discuss this information and their questions with a qualified health care provider.

Special Thanks:
Samantha Young

Music:
Modern – iMovie Library Collection

 

Script: 

Welcome to Journey to the Cure! Every month, we’ll sit down with scientists from the Hepatitis B Foundation and the Baruch S. Blumberg Institute to talk to you about hepatitis B and efforts to find a cure for hepatitis B. There’s still a long way to go, but we’re here to walk you through our journey.

Timothy Block, PhD:
The Hepatitis B Foundation is now largely devoted to basically outreach and what I call human services or being there for people. We wanted, however, to keep pressure on research communities – to make sure there was a research organization. The Hepatitis B Foundation created a second non-profit organization, originally called the IHVR, renamed in Dr. Blumberg’s honor after he passed away; and that’s the Baruch S. Blumberg Institute. And that’s a group of research scientists.

Kristine Alarcon, MPH:
What do we need in order to find a cure for hepatitis B?

Timothy Block, PhD:
Well, we need more research. We need focused research and the community’s kind of coming together with a consensus. The Hepatitis B Foundation organized that workshop, which we published research priorities. We call it the “Roadmap to a Cure.” The more scholarly, conservative title for that is a research agenda- research priorities. We believe that if you follow that roadmap or you follow those lists, we will be most likely- I don’t want promise anything- but we will most likely to find if not a cure, transformational new medicines. But, I’m hopeful that they’ll be one form of cure. So you follow that roadmap, and we should get there.

Kristine Alarcon, MPH:
Thank you so much. This has been very insightful on what it looks like for the cure in the future. Thank you again for joining us.

Timothy Block, PhD:
Thank you again so much for the opportunity and what I want the listeners to know that the Hepatitis B Foundation is at the forefront of this work. We were there 27 years ago. We were there through the times when hepatitis B was being forgotten. The cure for hepatitis C has brought new focus on the problem of hepatitis and we were- and we’re here now. We’re sitting in an office that is in a building that has the Hepatitis B Foundation outreach and advocacy staff of nurses and public health professionals. We’re also here with as I said with 100 scientists, who are focused on looking for a cure for hepatitis B. We’re working for the commercial community, working with the academic community. But we’re here stimulating the research, promoting workshops, promoting seminars, but also doing our own research. So I hope that you keep that in mind and know that there are- there are a group of people who remain very focused on it.

Kristine Alarcon, MPH:
Thank you so much for joining us and we’ll see you on the next episode.

Questions? Please contact us at info@hepb.org

 

Vlog: What Do We Do at a Hep B Screening?

Join Kristine Alarcon, MPH for A Day in the Life of a Public Health Coordinator to learn about some of the activities we at the Hepatitis B Foundation take part in!

This episode highlights our events for our local program, Hep B United Philadelphia, during January 2018. We show you the “behind-the-scenes” of a hepatitis B screening event.

Journey to the Cure: What is Hepatitis B? ft. Timothy Block, PhD

Welcome to Journey to the Cure. This is a web series that chronicles the progress at the Hepatitis B Foundation and Baruch S. Blumberg Institute towards finding the cure for hepatitis B.

In the first episode (part 1), Kristine Alarcon, MPH sits down with Timothy Block, PhD, President and Co-Founder of the Hepatitis B Foundation, to talk about the basics of hepatitis B.

For any questions about hepatitis B, please email info@hepb.org

The Hepatitis B Foundation is a national nonprofit organization dedicated to finding a cure and improving the lives of those affected by hepatitis B worldwide through research, education and patient advocacy. Visit us at www.hepb.org, on Facebook at www.facebook.com/hepbfoundation, on Twitter at twitter@hepbfoundation, and our Blog at www.hepb.org/blog

Disclaimer: The information provided in this video is not intended to serve as medical advice or endorsement of any product. The Hepatitis B Foundation strongly recommends each person discuss this information and their questions with a qualified health care provider.

Edited by:
Samantha Young

Music:
Modern – iMovie Library Collection

Vlog: “Hilleman: A Perilous Quest to Save the World’s Children” Screening

Join Kristine Alarcon, MPH for A Day in the Life of a Public Health Coordinator to learn about some of the activities we at the Hepatitis B Foundation take part in!

This episode highlights our special film screening of “Hilleman: A Perilous Quest to Save the World’s Children.”

Check out our previous blog post for more information about the event here and our last vlog here.