Changing the Conversation
A new storytelling campaign puts a human face on hep B
by Larry Buhl
Healthcare professionals agree that stigma around hepatitis is the biggest obstacle to getting tested.
“And not coincidentally, the people who are most at risk for contracting hepatitis B in the U.S. are part of communities that are least likely to talk about it,” Chari Cohen, Director of Public Health at the Hepatitis B Foundation, tells A&U.
She’s referring to Asian and Pacific Islanders (AAPIs). The Centers for Disease Control and Prevention’s (CDC) surveillance data from 2014 show that AAPIs have by far the highest hepatitis B virus (HBV) incidence in the U.S. Though they make up less than five percent of the U.S. population, AAPIs account for more than forty percent of chronically infected Americans. AAPIs are eight to thirteen times more likely to develop liver cancer and are more likely to die from hep B-related causes compared with all other groups.
An estimated two million Americans suffer from chronic hepatitis B, and up to seventy-five percent of these individuals do not know they are infected, according to the Foundation. Worldwide, more than 240 million people live with chronic hepatitis B.
Chari says the Foundation’s new #justB storytelling campaign should go a long way toward changing the conversation around the virus, especially in AAPI communities.
The #justB story bank features eighteen (for now) three-minute videos where people from across the U.S. share their experiences with hepatitis B—having the virus, knowing someone with it, or treating it—in their own voices.
Cohen says the aim of #justB is to save lives through storytelling. “We want to put a human face on hepatitis B and liver cancer to motivate people to get tested, vaccinated and treated.” The campaign also supports the Foundation’s advocacy efforts to increase federal funding for improved access to care and more research to find a cure.
In his video, former ABC 7 News (San Francisco) anchor Alan Wang talks about how doctors fail to test people for hepatitis B, even when family members have died from liver cancer.
“I think about the millions of other people who could lose the joy I have because they simply don’t know they have the virus and how lucky I am that my early treatment gave my liver a chance to regenerate itself,” he 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 virus.
Maureen, in her story, explains that the two girls they adopted from China were born with hepatitis B. “I’ve always been open with the girls about their status,” Maureen says. “But now they’re fourteen and sixteen and ready to start dating, and they sure don’t want to talk to me about what that means for relationships, for potential partners, about what the risks, however small, might be. They don’t want to talk to their pediatrician either.”
Phase one, which launched in May to coincide with Hepatitis Awareness Month, focuses on the U.S. Phase two will cover hepatitis B stories throughout the world, and will be up and running as soon as the grant money comes in, Cohen says.
Cohen tells A&U she’s looking for more stories with great geographic and language diversity. And she plans to expand into stories involving coinfection with hepatitis D. If hep B is talked about in hushed tones, hep D isn’t spoken of much at all. The hep D virus can only propagate in the presence of B and up to eight percent of those with B also have hep D. B and D coinfection has the highest fatality rate of all hepatitis infections, at twenty percent.
Cohen tells A&U that the #justB campaign will have qualitative and quantitative benchmarks of success.
“Qualitatively, we will be getting input from our network of providers, who after a month are already saying they’ve seen a change in the conversation [around hepatitis B]. They’ll also be collecting metrics through social media to determine how the conversation has changed.”
Quantitatively, those partners will be keeping track of any uptick in testing for hepatitis B due to the campaign.
Still, qualitative measurements of any outreach campaign are difficult to achieve due to lack of active surveillance of the virus in the U.S. Hep B reporting is not mandatory as it is with hep C.
The #justB digital stories are available on the Hepatitis B Foundation website at www.hepb.org/justb, and were produced in partnership with StoryCenter. Major donors were Arbutus Biopharma, Dynavax Technologies and Gilead Sciences.
Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles. Follow him on Twitter @LarryBuhl.