Hepatitis B Foundation's #justB Campaign Gives Voice to Personal Stories During May Hepatitis Awareness Month
DOYLESTOWN, PA (May 2017) - The Hepatitis B Foundation has launched its innovative #justB Storytelling Campaign to highlight the personal stories of people affected by hepatitis B to capture public attention during May Hepatitis Awareness Month. The #justB storybank is a national resource of digital stories from people across the U.S., designed to increase awareness of hepatitis B and its role in causing liver failure and liver cancer, decrease stigma and discrimination for those affected, and support the foundation’s advocacy efforts to increase federal funding for improved access to care and more research to find a cure.
“There is no better way to understand the impact of a chronic disease like hepatitis B than to hear the stories of real people affected every day,” said Joan Block, RN, BSN, executive director and co-founder of the Hepatitis B Foundation. “While an estimated 2 million Americans suffer from chronic hepatitis B, up to 75 percent of these individuals do not know they are infected. Our #justB campaign seeks to save lives through storytelling to help put a human face on hepatitis B and motivate people to get tested, vaccinated and treated.”
Each #justB story reflects a unique personal experience and an important message about hepatitis B. Former ABC 7 News anchor Alan Wang, a storyteller from California, talks about how doctors fail to test people for hepatitis B, even when family members have died from liver cancer. “I was only tested and received the attention I needed because of a medical reporter friend who connected me to a leading hepatologist [liver specialist],” Alan, 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 chronically infected with the hepatitis B virus.
“We were left to connect the dots because the medical community is failing to address a global epidemic that kills more than 700,000 people a year,” Alan said. “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 are disproportionately affected, which consider talk about deadly diseases to be taboo.”
While a safe and effective vaccine that prevents hepatitis B is available, there continue to be gaps in the administration of the vaccine, which is recommended for all newborns and children up to 17 years, and adults with diabetes and those at high risk for infection. Storyteller John E., from Florida, missed the vaccine and was diagnosed with chronic hepatitis B at age 16. He, like many people living with hepatitis B, does not know how he became infected.
“I was shocked the doctor couldn’t tell me how I was infected, as if finding out how I contracted hepatitis B would somehow cure me of it,” John, 26, shares in his story. One year after his diagnosis, John organized a cycling tour from Pensacola to Philadelphia with another 17-year old friend to raise public awareness and funds for the Hepatitis B Foundation. Today as a business entrepreneur, his goal is, “To be bigger than my diagnosis; I don’t want it to hold me back or define me.”
With more than 240 million people living with chronic hepatitis B worldwide, one highly impacted region that tends to be overlooked is Africa. Although HIV/AIDS is the primary public health focus in Africa, prevalence rates for hepatitis B are also high, particularly in west African countries. Thus, with the growing influx of immigrants from Africa into the United States, there is an increasing need to promote testing and care for hepatitis B in these communities.
Some of the barriers African immigrants face regarding hepatitis B are highlighted by storyteller Bunmi D., from Maryland, who grew up in Nigeria and emigrated to the U.S.to attend graduate school. She struggles with her family’s reluctance to discuss her father’s death from liver cancer, the result of a chronic hepatitis B infection that was diagnosed too late.
“Stigma is everywhere,” Bunmi explains. “People don’t think about the facts of how the hepatitis B 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,” she added.“In the U.S., the services are here, and I want to make sure that people of African origin know there are resource. I want to end the silence to save lives.”
The #justB digital stories are available on the Hepatitis B Foundation website at www.hepb.org/justb, and were produced in partnership with StoryCenter, a nonprofit organization that pioneered the global digital storytelling movement. Several of the stories were also filmed by Philippa Wharton, an independent video producer
This national #justB Storytelling Campaign is being promoted in collaboration with the Association of Asian Pacific Community Health Organizations (AAPCHO), and was made possible by educational grants from Arbutus Biopharma, focused on developing new hepatitis B therapeutics, and Dynavax Technologies, focused on developing a new adult two-dose hepatitis B vaccine.
About the Hepatitis B Foundation: The Hepatitis B Foundation is 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. To learn more, visit www.hepb.org, read our blog at hepb.org/blog, follow us on Twitter @HepBFoundation, find us on Facebook at facebook.com/hepbfoundation or call 215-489-4900.
# # #