Hepatitis B Foundation President Dr. Chari Cohen is quoted in a powerful new story about hepatitis B in The New Yorker. You can read it here.

Hepatitis B Foundation, StoryCenter release new #justB stories from people with lived experience

Doylestown, Pa.May 24, 2022– For Hepatitis Awareness Month, the Hepatitis B Foundation has released five new videos as part of its national #justB storytelling campaign, which conveys the powerful stories of real people affected by hepatitis B.  

Since 2017, the Hepatitis B Foundation has partnered with StoryCenter to host six #justB digital storytelling workshops for over 40 participants from more than 20 U.S. states and Canadian provinces. The #justB campaign empowers people with lived experience to share their stories with the goals of increasing awareness and advocacy around hepatitis B, decreasing stigma and discrimination, and promoting testing, vaccination and linkage to care and treatment. 

The latest #justB workshop was held in Berkeley, Calif., from March 18-20. It brought together five highly motivated adults living with hepatitis B who wanted to learn how to share their stories to educate communities and inspire action. Using StoryCenter’s collaborative, supportive and participatory approach, participants were guided through the process of writing their story script, recording a voiceover, compiling images and videos to help illustrate their story, and learning basic video editing skills to bring everything together into a two- to three-minute digital story.  

Each #justB story reflects a unique personal experience and an important message about hepatitis B. Watch them all at https://www.hepb.org/justb. 

Adama, who was born in West Africa and immigrated to the U.S. decades ago, recalls when he tested positive for hepatitis B and how he soon realized that the illness his mother suffered from must have also been hepatitis B. “As I began to learn about the virus, I realized, ‘Oh, I think that’s what killed my mom.” Having lost his mother to the disease, Adama knows the importance of testing, early detection and monitoring for those who are living with hepatitis B. “I take treatment, I learned how to take care of myself... But what about the people around me, in my community, who won’t even get tested? Everyone talks about HIV, about how to protect ourselves, but this hepatitis virus is too much ignored.” 

Chelle, a Utah resident, speaks candidly in her story about the stigma she encountered after being diagnosed with hepatitis B in the 1980s. “I felt so isolated. I couldn’t even talk to my family… Sometimes I thought about all the stomach problems I had complained of as a kid. I had been adopted from the Philippines in the 1970s. I was tested for this and that, but not for hepatitis B. Testing for the virus wasn’t widespread at that time. I was called a hypochondriac when the doctors couldn’t figure out what was wrong.” Chelle is grateful that things have improved since then and that she was able to pursue a career in the medical field. But her experience still motivates her to continue speaking out and fighting against hepatitis B related stigma that persists around the world.  

To watch the new #justB stories by Adama, Chelle, Wendy, DHE and FK, and to access the complete #justB video library with more information, please visit: www.hepb.org/justb 

The #justB storytelling project was launched in 2016 in collaboration with the Association of Asian Pacific Community Health Organizations (AAPCHO) and StoryCenter. It was made possible by individual donors and educational grants from Arbutus Biopharma, Dynavax Technologies, Gilead Sciences and Janssen pharmaceuticals. 

About Hepatitis B:  The most common serious liver infection in the world, it is caused by the hepatitis B virus, which attacks and injures the liver. Each year up to 1 million people die from hepatitis B worldwide, even though it is preventable and treatable. The number of adults living in the U.S. who have chronic hepatitis B infection may be as high as 2.4 million, which is nearly three times greater than the federal government’s official estimate, according to a new report by a team of public health experts, scientists and physicians. Hepatitis B is a “silent epidemic” because most people do not have symptoms when they are newly or chronically infected. Thus, they can unknowingly infect others and continue the spread of hepatitis B. For people who are chronically infected but don’t have any symptoms, their livers are still being silently damaged, which can develop into serious liver disease such as cirrhosis or liver cancer. 

About the Hepatitis B Foundation: We are the nation’s leading nonprofit organization solely dedicated to finding a cure for hepatitis B and improving the quality of life for those affected worldwide through research, education and patient advocacy. Founded in 1991, the Hepatitis B Foundation is based in Doylestown, Pa., with an office in Washington, D.C. To learn more, go to www.hepb.org, read our blog at hepb.org/blog, follow us on Twitter, Instagram and Facebook (@hepbfoundation) or call us at 215-489-4900. To donate, contact Jean Holmes at 215-489-4900 or jean.holmes@hepb.org.