Hep B Blog

Tag Archives: #justB

300 Million Reasons, About Hepatitis B, advocacy, Hepatitis B Advocacy, Hepatitis B Awareness, Living with Hepatitis B

The Purpose and Process of Storytelling

 

 

 

 

 

 

 

 

 

If you live in the U.S. and want to learn how to share YOUR hepatitis B story in a powerful and effective way to help raise awareness, educate communities, and inspire action around hepatitis B, consider applying to our next #justB digital storytelling workshop!  

The #justB campaign empowers people with lived experience to share their story and use their voice to help increase awareness and advocacy around hepatitis B, combat stigma and discrimination, and encourage more people to get tested, vaccinated, and/or linked to care and treatment. Beginning in 2017, the Hepatitis B Foundation has partnered with StoryCenter to host six #justB digital storytelling workshops for over 41 participants from across 22 states in the U.S. and Canada. The #justB campaign includes stories that have been translated and published in 13 languages in addition to English – Mandarin, Cantonese, Vietnamese, Korean, Arabic, French, Mandingo, Twi, Yoruba, Tagalog, Khmer, Mongolian, and Chuukese.  

Attending a #justB digital storytelling workshop is a unique and uplifting experience that brings together people directly affected by hepatitis B in a supportive, small group environment (no more than 10 participants), where they can feel free to share openly about their experiences while learning to create short videos or “digital stories” in their own words. During the workshops, participants are guided through a “Story Circle” activity, receive feedback on selecting specific parts of their story to develop their script around, record a voiceover, gather photos and video clips, and combine these materials into short videos around 3-4 minutes long. After the workshops, participants become part of a growing community of more than 40 other storytellers who receive ongoing communications, resources, and opportunities to stay connected and engaged in hepatitis B advocacy and education.  

 

 

 

 

 

 

 

The storytellers gather around for a storytelling workshop.

 

Over the years since the initial launch of #justB, we have seen just how powerful storytelling is, and how personal stories can be used to promote greater awareness, openness, and discussion around an often stigmatized disease like hepatitis B. We have also learned that the process of storytelling – and participation in storytelling workshops – has a positive and lasting impact on storytellers themselves.  

For example, the following quotes (collected from storyteller interviews and audience surveys) highlight the impact that the #justB campaign has had on participants and viewers. 

Quotes from storytellers about their experience: 

  • “In the weeks after the workshop, I felt a lot more hopeful and supported.”  
  • “It was an awesome, life-changing experience and I look forward to doing more work with the Hepatitis B Foundation and various other organizations to raise Hepatitis B awareness and prevention.” 
  • “This storytelling workshop was a true blessing for me personally. Before, I felt isolated and disconnected. After the workshop and getting to know how Hep B has affected others, I feel a great sense of family and inclusion. My true hope is that our stories can change how others not affected view those who are and that more emphasis would be placed on the treatment and cure for this condition.” 
  • “I remember feeling very lonely when I first got diagnosed. I was, I don’t know, a leper or something but then to hear other people having gone through that same fear and that same sort of feeling of isolation, just super impactful. It made you recognize that this doesn’t have to be a lonely or solitary thing. There are other people who have the same struggles and experience the same fear, I guess, that you did. That was incredibly powerful, and definitely something that I didn’t know I was missing that.” 
  • “The workshop definitely changed my perspective on the power of storytelling for mental health.”  

Quotes from story viewers / audience members:  

  • “I really enjoyed the personal stories. Hearing first person experiences re: HBV has such a significant impact and realism that is not accessible when approaching the topic from a clinical or third person perspective. It’s very sad but powerful to hear the experiences re: stigma, isolation, perseverance, and how they are fighting for their families, friends, and others.” 
  • “It was very informative. I came in not understanding what it really was. Now I understand how important vaccinations are. It is an important topic to discuss, and I want to let my friends and family know how serious the problem is.” 
  • “The stories were extremely powerful. That paired with data and key messages [was] a very effective presentation.” 
  • “JustB storytelling was very moving! The diversity in storytellers was great.” 
  • “Very touching, impactful and inspirational! Thank you to all the storytellers for your bravery!”  
  • “The storytelling was wonderful. I will definitely be using the stories in our education and awareness outreach.”  

 

 

 

 

 

A postcard featuring quotes from the Dai’s Story.

 

Learn more about our current storytellers at www.hepb.org/justb. To apply for the workshop, fill out this form: https://storycenter.wufoo.com/forms/zyu5qsb02lscca. We accept and review applications on a rolling basis until all spots are filled.  

The next #justB workshop will take place this summer 2023 (tentatively in late July or August) and will be held in either Washington, DC or in the Doylestown/Philadelphia area. All travel, accommodations, and meals will be coordinated and paid for by the Hepatitis B Foundation. Participants will also receive a honorarium for completing the workshop.  

The Hepatitis B Foundation recently launched a new website for our storytelling campaign. Visit https://www.hepbstories.org/ to learn more!

If you have any questions or feedback, please contact Rhea Racho, Program Director – Advocacy and Engagement at rhea.racho@hepb.org. 

Living with Hepatitis B, Relationships

I Have Hepatitis B; Can I Get Married?

At the Hepatitis B Foundation, we answer thousands of calls, social media messages, and emails a year from individuals affected by hepatitis B. One of the most common questions we receive is: If I have hepatitis B, can I still get married? 

To put it simply, yes, a person living with hepatitis B can get married. In fact, a healthy relationship can be a source of love and support for those who may feel alone in their diagnosis.

Transmission of hepatitis B can be prevented in your partner; it’s a vaccine preventable disease! Keep in mind that hep B is common in many parts of the world. When properly tested, people often learn they too are living with chronic hep B or that they have recovered from a past infection. A hepatitis B triple panel blood test (HBsAg, HBcAb total and HBsAb) will let your partner know if they have a current infection, have recovered from a past infection and whether or not they need to be vaccinated.  Future children should also be vaccinated starting as a newborn to help prevent transmission, especially if the mother is hepatitis B surface antigen positive (HBsAg+)!

If your partner is waiting for the vaccine or is unable to be vaccinated for some reason, there are other precautions that one can take to prevent transmission: practice safe sex by using a condom, properly wrap all wounds, clean up any spilled blood with gloves and a fresh solution of 1 part bleach to 9 parts water, and don’t share sharp personal items (razors, toothbrushes, nail clippers, and body jewelry). This list may seem like a lot, but they are mostly things that we do every day without thinking much about it! 

Physically, there are no barriers that prevent an individual living with hepatitis B from getting married. The question often stems from a place of fear that is fueled by the stigma and discrimination around them. Oftentimes, we give fear too much power in our lives. It can control our actions and cause us to isolate ourselves. It’s important to remember that an individual is not their diagnosis. The essence of who you are as a person has not changed! 

Many of our #justB storytellers are leading happily married lives with supportive spouses who help them maintain a healthy lifestyle. Chenda was already engaged when she first discovered that she was living with hepatitis B. She said, “ When my fiance called, I was scared to answer but I told him the truth. He said ‘I love you’ and encouraged me to see a doctor”. Chenda and her husband now have a baby who they made sure was protected from the virus! Another storyteller, Heng, shares how he felt when the woman he was in love with told him that she was living with hepatitis B. After she told him, he got tested and found out he was already protected due to the vaccine! They later married and had children. “We make better lifestyle choices because of her illness, but we don’t let it define our lives”. 

Hepatitis B is not a weakness. Each day, millions of people living with chronic hepatitis B make the choice to wake up and live life to the fullest. Like many others, Edwin – one of our new #just B storytellers – was surprised by his diagnosis. Instead of letting it hold him back, he decided to show the world how strong he was by competing in a series of rigorous athletic competitions to set an example for others like him. “I want to show that Hepatitis B is not a condition that debilitates someone,” said Edwin.  “We can triumph through adversity.” 

Our #justB storytellers are examples of hope, inspiration, and strength; they are people living their truths.They also remind us that the difficulties that we face in life can make us stronger as a person. Despite the fear that Bright felt, he persevered and took action. “Slowly I started to have days when I wasn’t hopeless, when I could face the unknown. I talked to my doctors, did my own research, and made my own decisions….Now I realize I have changed: I am more resilient than ever before.”

Living with Hepatitis B

Holidays with Hepatitis B: How to Tell Your Family

Image courtesy of Unsplash

As the holidays approach, families are planning parties and dinners and preparing to spend time with their loved ones. In such a merry atmosphere, the idea of discussing hepatitis B – whether its a recent diagnosis or the first time that you are ready to disclose your status – may be intimidating. However, it doesn’t have to be! In honor of  National Family Health History Day – which falls on Thanksgiving – we put together some tips to help you start the conversation.

 

  • Start Small – Facing your entire family at once can be frightening in any situation. Consider pulling one or two family members that you trust aside and speak with them first. They might offer advice on how to tell the rest of the family.
  • Come Prepared – Although chronic hepatitis B is the world’s most common risk factor for liver cancer, there is a universal lack of education and awareness about the infection. Use our fact sheets to help your loved ones understand what hepatitis B is, how it impacts your liver, and what it means to live with it.  For more fact sheets and to view them in different languages, click here. Be sure to let your family know that hepatitis B is spread by direct blood contact, not through casual interactions. They cannot be infected by sharing the same utensils as you, eating food prepared by you, or casual touches such as hugging.
  • Be Encouraging – Most people who are diagnosed with hepatitis B live long, healthy lives! Let your family know that you are monitoring the infection and taking the necessary precautions to prevent liver damage. Your family will be happy to know that you are in control of your health!
  • Let them know how to help – Although you may be able to
    Image courtesy of Canva

    manage hepatitis B by yourself, creating a support network is always a good idea! Do you have any active family members?  Exercise is great for the liver, so ask them to come along next time you go for a bike ride or hit the gym! Maybe you know someone who is great at cooking. Try cooking some healthy meals together!

  • Give them time – Hearing about a medical diagnosis can be difficult for everyone involved and may also be a sensitive topic for some. Don’t let this discourage you! Try showing them a few of our #justB campaign videos, which feature real people who have been impacted by hepatitis B. Some stories, like Alan’s, discuss how people often do not realize that hepatitis B and liver cancer are related. Other stories, like Alice’s, showcase the importance of being honest with your loved ones and explain how to turn a diagnosis into an educational opportunity. Viewing  #justB stories might help your family members feel more comfortable talking about the infection and encourage them to learn their own hepatitis B status.

National Family Health History Day

Image courtesy of Canva

In 2004, the Surgeon General declared Thanksgiving Day to be National Family Health History Day. It’s meant as a time for families to discuss health issues that appear to run in the family. While hepatitis B cannot be passed from generation to generation like genetic diseases, it is commonly spread within families due to how the virus is transmitted. The most common mode of transmission is from mother-to-child during childbirth, often because the mother was unaware that she was infected and that certain precautions needed to be taken to prevent transmission to the baby. As hepatitis B rarely has any symptoms, many people do not discover that they are infected until a family member is diagnosed or they develop liver damage.  Approaching the topic and starting the conversation can help to break this cycle of transmission within families.

The good news is that hepatitis B is preventable and, if detected early, liver damage can be prevented! Offer to help your loved ones make an appointment with their doctor or to accompany them when they go to get tested or vaccinated; they’ll appreciate the extra support!  

Also, consider making some time this Thanksgiving to fill out My Family Health Portrait – a free tool that maps out your family’s history of health conditions and identifies what you may be at risk for.

The topic of health is important all year round; you don’t have to wait for the holiday season to bring it up! Start the conversation today and help your family find the information they need to protect themselves and stay healthy!

 

Hepatitis B Advocacy

Creating a #HepBFree Future in Arizona

Layal Rabat, Empowerment and Advocacy Manager at Asian Pacific Community in Action (APCA), provides an inside look into APCA’s hepatitis B efforts in Arizona.

Asian Pacific Community in Action (APCA) was formed in 2002 to meet the health-related needs of Asian Americans and Native Hawaiian and Pacific Islanders (AA & NHPI) residing in Arizona. Our vision is to inspire diverse communities to seek healthier futures. Our mission is to provide services, advocacy and education for diverse communities to help create a healthier and more empowered population seeking good health. In addition to hepatitis B testing, education, and referrals, APCA’s programs include Oral Health Advocacy, Advocacy Training, Policy Work, , Messaging/Storytelling , the Affordable Care Act, Medicaid, SNAP enrollment assistance, Civic Engagement, and Pop-up Health Fairs & Clinics.

Engagement Through Storytelling 

Over the years, we’ve prided ourselves on our creativity and thinking of ways to connect with communities through arts and innovative practices. This has led to the creation of  #HepBGirl and the HepBoo basketball fundraiser to support our hepatitis B efforts.

APCA’s most recent work has been centered around a mini-grant project generously funded by Hep B United – a national coalition to address and eliminate hepatitis B. The goals of the mini-grant were to help establish or contribute to hepatitis B prevention, education, linkage to care, and surveillance on a local level. APCA focused on education and empowerment by implementing the Hepatitis B Foundation’s (HBF)  #justB storytelling campaign into the community.

The project timeline was based on the recruitment of storytellers, conducting storytelling events, and conducting the analysis. The biggest lesson learned is that recruitment can take the most time out of all of the goals. We were aware of the stigma around talking about the infection and wanted to conduct our work in an ethical, sensitive way. To do this, we worked with a provider who helped by offering the opportunity for their patients to share their experiences. The patients could then choose whether to contact us or not. We also assured those that chose to speak that we would not publish any of the stories without their explicit approval and consent. To respect participant time and efforts and reduce the labor required of them for the event, APCA took great care to do as many of the preparations as possible, simplify the questions being asked, and conduct the events in a manner that respected their emotional labor and centered their explicit consent.

Hepatitis B In Arizona

Centered upon vulnerable populations such as older Asian American and Pacific Islander (AAPI) adults who were born before certain vaccine policies, APCA’s hepatitis B work includes addressing policy issues, access to care, and direct services. Direct services around hepatitis B included screenings, vaccinations, and referrals to care and treatment. In the past, APCA tested 2,869 people and found that 6.7% had active hepatitis B infections. An additional 31.2% were not vaccinated.                                                                                     

Arizona’s hepatitis B story mirrors that of the United States overall. From 2006 – 2015, an average of 979 chronic hepatitis B and 128 acute hepatitis B cases were reported each year in Arizona, though there has been a decrease in the number of acute hepatitis B cases identified in recent years. 
The rate of new reports of acute hepatitis B was highest among persons aged 40-44 years. Chronic hepatitis B rates were highest among those 30-34 years. 
The average annual rate of hepatitis B infection among Asians/ Pacific Islanders was much higher than other racial/ethnic groups (1,2). 

Looking Towards the Future

The mini-grant opportunity will help to launch #HepBFreeArizona – a campaign aimed at eradicating hepatitis B in the state. We hope to continue working with those that shared their stories to help build our future hepatitis B program and get it to a level where we can provide a space for patients living with hepatitis B to lead the way. The same barriers that prevent community members from accessing care also hinder their efforts to get involved in advocating for the policy changes that will alleviate those barriers. We are always learning how to balance community member autonomy and valuing their labor with respect to the time and effort they contribute and not taking more than we are giving.

Thank you to Layal Rabat for serving as our guest blogger this week! If you would like more information from Layal or the Asian Pacific Community in Action, please visit their website or contact them here.

 

Layal Rabat is a third culture kid who has spent years practicing the fine art of parachuting into projects as the need for her skills arises. She takes an intersectional approach to her work and does not shy away from any cause where injustice is present and her contribution is welcomed and necessary. Her experience lies in project management, traditional and digital communications using all mediums from her own voice to videos to writing to tweeting, assembling audience-specific information for delivery in an infinite amount of ways. An infinitely curious researcher and an obsessive collector and assembler of information, she is often seen playing a supportive role in the background and amplifying the voices of those directly affected by injustice in her community. Fluent in English & Arabic, intermediate in Spanish & knows a tiny bit of Armenian. Current issues are immigrant rights and public health. With a BS in Psychology & an MA in Social Justice & Human Rights, she is currently working as the Empowerment & Advocacy Manager at the Asian Pacific Community in Action, and volunteering her time as IT/Web & Social Media Coordinator at Phoenix Allies for Community Health. She also volunteers with the Restoration Project, Phoenix, and serves as a board member with Sonoran Prevention Works. In her spare time, she enjoys listening to music (& karaoke), reading, writing, photography, and traveling.

 

References

  1. 2016, Viral Hepatitis Epidemiologic Profile for Arizona
  2. 2016, Arizona Department of Health Services

 

Hepatitis B Advocacy, Living with Hepatitis B

A Day in the Life of Program Managers: #justB Workshop

Welcome to a Day in the Life of Program Managers! Join Catherine Freeland, MPH, and Rhea Racho, MPAff for a day in their work life and the justB workshop.

“#justB: Real People Sharing Real Stories of Hepatitis B” is collaboration between the Hepatitis B Foundation, Story Center, and Association of Asian Pacific Health Organizations (AAPCHO) to share the stories of people affected by hepatitis B. The episode highlights the workshop and process our storytellers go through to develop their impactful stories.

Music
Clouds – Joakim Karud

WEBSITE: http://www.hepb.org
FACEBOOK: https://www.facebook.com/hepbfoundation
TWITTER: https://www.twitter.com/hepbfoundation
INSTAGRAM: @hepbfoundation
SNAPCHAT: @hepbfoundation

Hepatitis B Advocacy, Hepatitis B Prevention

Vlog: A Day in the Life of a Public Health Coordinator

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!

In this vlog, Kristine and her colleagues participate in an Asian American Pacific Islander Town Hall to voice their concerns about hepatitis B in the Philadelphia community. They also attend the 2017 Philadelphia Asian American Film Festival for a screening of the Hepatitis B Foundation‘s #justB storytelling campaign.

 

Hepatitis B Advocacy, Hepatitis B Prevention

A Capitol Celebration: US Leaders in Hepatitis B Celebrate World Hepatitis Day

Hep B United (HBU), a coalition established by the Hepatitis B Foundation (HBF) and the Association of Asian Pacific Community Health Organizations (AAPCHO), held its fifth annual Hep B United Summit from July 26th to 28th in Washington D.C. The summit was held to promote screening and prevention strategies and advocate for a cure to further HBU’s mission to eliminate hepatitis B in the United States.

The summit is the largest gathering of hepatitis B leaders from around the country including public health agencies, national non-profit organizations, community coalitions, and individuals and family members affected by hep B. Catherine Freeland, MPH, Public Health Manager of HBF, said, “The summit is like a family reunion.” It’s an opportunity for HBU members to convene, share best strategies, and celebrate their wins over the past five years. The partnerships within HBU ensures that best practices and resources are shared as well. “Once we have a cure, we are committed to making sure chronically infected Americans get it,” Chari Cohen, DrPH, MPH, co-chair of HBU mentioned during the summit. Over the past year, HBU screened 22,556, educated 52,194, and reached over 6 million people with in-language hepatitis B messaging! That’s a win for sure!

As a part of the summit, HBU partners visited Capitol Hill to discuss with federal legislators the need to support hepatitis B and liver cancer research, education, screening, and treatment programs. A Congressional reception was also held to highlight the “#justB: Real People Sharing their Stories of Hepatitis B” storytelling campaign, which increases awareness of hepatitis B through personal stories. There were also meeting sessions focusing on capacity building, sustaining local hepatitis B coalitions, and best ways to utilize resources like the “Know Hepatitis B” campaign from the CDC and Hep B United and the #justB campaign. The Hep B United Summit is a way to celebrate World Hepatitis Day, which is on July 28th every year. Partners celebrated and raised awareness for World Hepatitis Day around Capitol Hill with a scavenger hunt!

At the Summit, HBU and its CDC partners presented five community leaders with the 2017 Hep B Champion Awards in recognition of their outstanding commitment to eliminating hepatitis B and liver cancer in their communities:

 Cathy Phan, the Health Initiatives Project Manager at HOPE Clinic in Houston, Texas, is recognized for her dedication to reducing health disparities, advocating for access to health care and health equity for underserved populations. Cathy brings unique perspectives, best practices and creative, innovative ideas from the local community clinics to the national level.

Vivian Huang, MD, MPH, the Director of Adult Immunization and Emergency Preparedness for the New York City Department of Health and Mental Hygiene and the medical director for the NYC Department of Health Immunization Clinic is recognized for her commitment to reducing the burden of vaccine-preventable diseases locally and globally including hepatitis B and liver cancer. Dr. Huang is a strong, tireless advocate for hepatitis B prevention, education, and treatment and health equity through health department engagement.

Hong Liu, PhD, the Executive Director of the Midwest Asian Health Association in Chicago, Illinois, is recognized for her innovative approaches to educating the public on hepatitis B and her willingness to share her best practices and experiences with others working in the field. This year, Dr. Liu’s leadership has led her organization to educating over 1,337 individuals in Chicago’s Chinatown district and screening close to 300 individuals for hepatitis B.

Dan-Tam Phan-Hoang, MSc., is program manager of HBI-Minnesota, a Minneapolis, Minnesota-based non-profit that she helped start in 2015. Dan-Tam is recognized for her leadership in Minneapolis, building strong collaborations with community leaders, healthcare providers, funders, and government agencies to address hepatitis B throughout the state and successfully establishing a hepatitis B outreach and prevention program for high-risk communities in the Twin Cities.

The National Task Force on Hepatitis B for AAPI, is a national organization that brings together scientists, health professionals, non-profit organizations, and concerned citizens in a concerted effort to eliminate the transmission of hepatitis B and to decrease health disparities among those chronically infected. The Task Force is recognized for increasing physicians’ awareness about hepatitis B and launching a new health care provider program, bringing together public health and health care professionals in regional meetings around the country. The Health Education for Liver Providers (H.E.L.P.) Training Program is designed to provide health care providers and their medical team core medical knowledge of hepatitis B and hepatitis C.

Read the summit press release here.

More pictures of the summit can be found on HBU’s Facebook album, Storify, and e-newsletter.

To read about the Hep B United 2016 Summit from last year, click here.

Hepatitis B Advocacy, Living with Hepatitis B

Join Us for a Twitter Interview! Meet Our Storytellers and Learn Their Hepatitis B Stories

#justB-Twittervu-blogThe Hepatitis B Foundation is proud to launch its storytelling campaign, sharing the stories of people living with and affected by hepatitis B. Join the Twitter interview at 2 p.m. (EST), Tuesday, May 16, hosted by the Hepatitis B Foundation and StoryCenter.

We will introduce three of our storytellers and their stories. Join the Twitter interview with the hashtag #justB and hear the poignant stories of real people living with hep B.

We will be introducing Jason, Bunmi and Maureen K. Jason, was in a difficult place in his life with addiction and depression when he learned of his hepatitis B and sought treatment. Bunmi, originally from Nigeria, talks about the loss of her father to hepatitis B- related liver cancer and the unwillingness of her family to talk about his disease. Maureen’s hepatitis B journey began with the adoption of her daughter, and the struggle with disclosure with family and friends. These brave storytellers are ready to put an end to the silence surrounding hepatitis B.

Below are the topics scheduled for discussion during the Twitter interview. How can you contribute to the conversation? Please support Jason, Bunmi and Maureen K. as they disclose their hepatitis B stories on social media. Consider sharing parts of your hep B story or pose a question. Join the conversation with the hashtag #justB.

T1. Tell us about hepatitis B, the storytelling campaign and what the foundation hopes to achieve for those affected by hepatitis B.
T2. What makes hepatitis B different from other diseases, and how do these stories highlight the challenges associated with hepatitis B?
T3. We’d like to open it up to our storytellers. Please tell us about your story, and what makes hepatitis B different from other diseases.
T4. How has hepatitis B affected your life?
T5. What made you decide to share your hepatitis B story? Were you concerned with the stigma associated with hepatitis B?
T6. Describe your experience meeting with others impacted by hepatitis B.
T7. If there is one message you would like to get across to others about coping with #hepatitis B, what would it be?
T8: What would you tell others that are struggling with whether or not they should share their hepatitis B story?

Co-hosts and special guest handles include:

Be sure to watch Jason, Bunmi and MaureenK‘s stories.

Are you just getting started with Twitter and want to know how to join the conversation?  Type #justB in the search box of the Twitter application and click on the “latest option” to follow the twitter view.

#justB in search box

 

 

 

 

 

 

 

You can prepare any questions or tweets you might have for the above participants in advance, or you can also tweet on the fly, re-tweet, or Like a tweet from the chat.

The topics are labeled T1, T2, etc. so please respond/answer specific topic by using A1, A2, etc. in front of your tweets. Remember to include the #justB hashtag, which is not case sensitive, in all of your tweets.

Looking forward to sharing the stories of our guests on the Twitter view. Please welcome them by joining the conversation!

Hepatitis B Advocacy, Living with Hepatitis B

People Affected by Hepatitis B Share Stories of Family Secrets, Stigma and Diagnoses That Came Too Late

Alan Wang of Berkeley, CA, describes how doctors failed to test his family for hepatitis B in his video story.
Alan Wang of Berkeley, CA, describes how doctors failed to test his family for hepatitis B in his video story.

In an innovative storytelling initiative, people living with chronic hepatitis B open their hearts and share their stories of family secrets, stigma and diagnoses that came too late as they confront the impact of hepatitis B on themselves and the people they love.

The Hepatitis B Foundation, working with StoryCenter, has created unique video stories that share the experiences of people affected by hepatitis B, which affects one-third of the world’s population. The video stories, which debut May 1 in recognition of Hepatitis Awareness Month, are designed to raise awareness about the liver disease that affects 2 million in the U.S.

There is no better way to understand the human toll hepatitis B takes than to hear directly from those affected. Most people know very little about this disease and up to 75 percent of people living with hepatitis B don’t know they’re infected. The hope is that these stories will put a human face on this infection and help improve testing, vaccination and treatment.

One storytelling video, featuring former ABC 7 News anchor Alan Wang of Berkeley, CA, talks about how doctors fail to test people for hepatitis B. It was after the CEO of Newsworthy Media suffered liver damage that a doctor tested him for hepatitis B. “It was only because I (had) a medical reporter friend who connected me to a leading hepatologist that I got the attention I needed,” Wang, 49, explains in his story. After his diagnosis, he encouraged family members to be tested and his mother and siblings were also found to be infected by the disease that is easily transmitted at birth.

justB“We were left to connect the dots because the medical profession is failing to address an epidemic that kills more than 700,000 people a year,” he explained. “It’s bad enough that hepatitis B is a silent killer with few symptoms until it’s too late. It’s also ignored by Asian cultures that consider talk about deadly diseases to be taboo.”

While a safe and effective vaccine that prevents hepatitis B has been available since 1982, many Americans did not have access to the vaccine. John Ellis Jr., another hepatitis B storyteller who lives in Pensacola, FL, was diagnosed with chronic hepatitis B at age 16. He, like many people living with hepatitis B, does not know how he became infected.

“When I was first diagnosed, I was shocked the doctor couldn’t tell me how I contracted it, as if finding out how I contracted hepatitis B would somehow cure me of it. As I grow older, what’s most important to me is maintaining my health.” Ellis explains in his story that he wants to be, “bigger than his diagnosis.” He does not want hepatitis to hold him back or define him. He is an entrepreneur and he has organized a charity bike ride to raise awareness and funding for research.

Another featured storyteller is pharmacist Bunmi Daramaja, of Elkridge, MD, who grew up in Nigeria and emigrated to the U.S. She struggled with her family’s reluctance to discuss her father’s death from liver cancer, resulting from chronic hepatitis B.

“Stigma is everywhere (in my African culture),” she explained in her story. “People don’t think about the facts of how the virus is transmitted– they are afraid to even touch someone who has it. Many people don’t even want to get tested, because treatment is either not available or costs too much money. They say, ‘What’s the point?’ This needs to change.

“In the U.S., the services are here, and I want to make sure that people of African origin know there are resources. I want to end this silence,” she explained.

The Hepatitis B Foundation’s Storytelling page helps tell the story about an infection in the U.S. that is under-diagnosed, under-treated and remains stigmatized across America.

Baruch S. Blumberg Institute