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.

Releases New #justB Stories to Empower People Affected by Hepatitis B, Raise Awareness and End Stigma

DOYLESTOWN, PA (May 2018) - The Hepatitis B Foundation released seven new videos as part of its national #justB storytelling campaign, which was launched one year ago to highlight the personal stories of people from across the United States who have been affected by hepatitis B. The #justB campaign is designed to increase awareness of hepatitis B and its role in causing liver failure and liver cancer, decrease stigma and discrimination associated with the disease, promote testing and vaccination, and support the foundation’s advocacy efforts to increase federal funding for improved access to care and more research to find a cure.

“Since the campaign launched last year, we have seen firsthand how much of a difference it makes when we share the stories of real people affected by hepatitis B at community events, educational briefings, or meetings with lawmakers,” said Rhea Racho, public policy and program manager for the Hepatitis B Foundation. “The #justB stories humanize the problem of hepatitis B and help the general public understand the impact of this disease.”

Each #justB story reflects a unique personal experience and an important message about hepatitis B. Many of the stories were also translated and recorded into second languages including Chinese, Vietnamese, Korean, Tagalog, Khmer, Twi, and Yoruba.

Alice, a storyteller from California, was diagnosed with hepatitis B during her first pregnancy. She learned that she probably contracted the virus from her mother when she was born and decided to be very open with her own children about the disease, even though many Chinese families like hers feel that talking about sickness is taboo. Because of her experience, Alice is passionate about educating Asian Americans and Pacific Islanders – 1 in 12 of whom are estimated to have hepatitis B – about the disease and about preventing transmission at birth.

“I was blessed because my OB/GYN knew what to screen for and took precautions to prevent transmission from mother to child,” she shares in her video. “My two children got thevaccine at birth, and then completed the three shots afterward. When they were re-tested at age one and again at age two, the tests came back negative.”

Xuan, whose parents came to the United States as refugees from Vietnam, talks in her video about language and knowledge barriers that keep many people living with hepatitis B from accessing appropriate care and treatment to prevent further health complications. At just 12 years old, Xuan found herself trying to be her dad’s medical interpreter after he was diagnosed with hepatitis B.

“My dad deserved a professional interpreter, but I did my best. With me, kind health workers, and understanding doctors, he started to learn about hepatitis B and take control over his life.” Xuan’s dad is still living a healthy life with hepatitis B, and Xuan now works as a hepatitis B caseworker and interpreter in Mississippi.

With more than 292 million people living with chronic hepatitis B worldwide, another highly impacted region is Africa. Prevalence rates for hepatitis B are particularly high in west African countries. In African cultures, stigma and myths surrounding hepatitis B are very common, and these misconceptions often persist among African immigrant communities in the United States. Peter, who grew up in Nigeria and currently attends school in Wisconsin, felt alone and feared discrimination at his job when he first learned he was living with hepatitis B.

“In Nigeria, people don’t go to the doctor unless they are already sick. So they don’t find out about things like hepatitis B, and they don’t know how it’s transmitted,” Peter explains in his video. “Some people in Nigeria are superstitious and believe you can get hepatitis B from witchcraft. But I know hepatitis B is real, and there are real ways to deal with it.” After his diagnosis, Peter made sure that his wife and two children were vaccinated to protect them from contracting the virus.

The #justB digital stories, produced in partnership with the nonprofit organization StoryCenter, are available on the Hepatitis B Foundation website at www.hepb.org/justb. Additional videos in the #justB storybank were filmed by Philippa Wharton, an independent video producer.

The #justB storytelling campaign was launched in 2017 in collaboration with the Association of Asian Pacific Community Health Organizations (AAPCHO) and was made possible by educational grants from Arbutus Biopharma, Dynavax Technologies and Gilead Sciences.

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.

 

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