Talking About It
A documentary put human faces on hep B in Asian-American communities
by Larry Buhl
According to the U.S. Centers for Disease Control and Prevention (CDC), Asian and Pacific Islanders (APIs) in the U.S. are at very high risk of carrying or contracting hepatitis B. Although APIs make up less than five percent of the total population in the United States, they account for more than fifty percent of Americans living with chronic hepatitis B. As many as two out of three Asian Americans who are living with hep B aren’t aware they have it. That’s a big problem because hep B often goes undetected and can lead to liver cancer.
In the forty-minute documentary Be About It, which premiered at the Center for Asian American Media Film Festival (CAAMFest) in San Francisco in March, hepatitis B is omnipresent, a silent ghost in a film that the director says is not issue-based.
Be About It follows the families of two Asian-American men who contracted hep B at birth: Bay Area TV news reporter Alan Wang and AJ Jabonero. Alan saw several family members suffer and die from liver complications due to hep B, and now diligently monitors his own health. AJ, a radiology technician and triathlete, lost his father to liver cancer, but the cause of the cancer—hep B—was not often discussed in AJ’s family.
Talking about something that’s usually kept quiet in Asian families is one reason Christopher Wong, the director of Be About It, was drawn to the project. He tells A&U that stigma about hepatitis—and about many diseases—is pervasive among Asian Americans.
“There’s shame for Asian parents if they learn they passed [hep B] on to their kids,” Wong says.
But passing it on to children is shockingly common in Asian-American families. The rate of hep B in
Asian countries (and African countries and parts of South America) is much higher than in the U.S. A thirty-year-old, second generation American man, for example, may not realize that the virus had been passed on for generations. And while vaccinating for B at birth is the norm now in the U.S., it’s still rare in much of Asia.
The film was supported by Gilead Sciences, Inc., but they’ve kept a low profile. They’re in the closing credits, but aside from providing the funding, they left Wong alone to do what he wanted, he tells A&U.
“Gilead came to me and said wanted a film that felt like a real documentary, not a promotional or educational piece. That was fine with me because I wanted to tell personal stories about Asian Americans. They gave me complete directorial control.”
Wong gravitated to two men, Wang and Jabonero, whose lives took very different turns. The film is a short window the men’s lives as they go through their daily routines, showing both days both tumultuous and quotidian: Wang, worried about tests that might show liver cancer and the Jabonero’s family members remembering him as a vibrant triathlete who eventually succumbed to liver cancer.
The film gently suggests that Jabonero might have avoided his fate if he had gotten tested and treated sooner. But Wong insists that the film is not meant to be preachy or teach-y. Though at the premiere Wong did use a Q&A with members of both families in the film to promote testing in the API community.
Though Be About It doesn’t give statistics, the numbers are grim for APIs like those in the film.
It’s the stigma, common with older APIs, Wong adds. The thinking is, forget about the shameful thing.
That thinking has taken the life of many APIs. CDC statistics show approximately one in twelve APIs are living with chronic hepatitis B, but most do not know it. It is a leading cause of cancer deaths in this population; the death rate from hep B complications is seven times greater than rates among whites.
Across all populations, up to a quarter of people with chronic hepatitis B develop serious liver damage, including liver cancer. Although it is commonly passed on from mother to baby, one can also contract it through blood contact with a person who has the disease. The good news is, due to widespread vaccinations in the U.S., hepatitis B infections among children and adolescents have decreased by ninety-five percent since 1990.
While the Hep Talk column has focused on hepatitis C, there will be more reporting in innovations in hepatitis B research, as the success in curing C begins fueling a race to cure C’s often overlooked but more common cousin, B.
Larry Buhl is a radio news reporter, screenwriter, and novelist living in Los Angeles.