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When Jacki Chen found out he had hepatitis B more than 10 years ago, he became something of a quiet evangelist for Asian Americans to get tested for the virus in a community that doesn’t always embrace such openness about the infection.
Chen, a longtime Rutgers University professor, made it a mission to destigmatize a disease that disproportionately affects Asian Americans by launching a popular support group, starting a nonprofit organization and even lobbying members of Congress.
“A lot of immigrants don’t want anyone to know because it might have consequences to their job, to their relationships, to their family,” Chen said. “The problem is people don’t get tested and then it becomes a much bigger problem.”
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Asians make up about half of the 1 million people in the U.S. with chronic hepatitis B and are eight times more likely to die from the disease than Caucasians, according to the U.S. Department of Health and Human Services.
The most highly impacted groups are immigrants from China, Korea, Vietnam and Pacific Islands where hepatitis B has long circulated and infant immunization rates are low, according to the Hepatitis B Foundation.
The ‘silent infection’ has few symptoms
Because it has few symptoms and is called the “silent infection,” many people don’t know they have hepatitis B until more serious problems develop. The virus, which spreads via blood and bodily fluids, infects the liver and can lead to cirrhosis and cancer.
It can circulate within families because it is easily passed down from mother to child, which is why the first dose of hepatitis B vaccine is given within the first 24 hours of birth in the U.S. For foreign-born Americans, that means testing must be a priority since anti-viral medications can slow its ability to damage the liver, experts say.
New Jersey reported 2,085 new cases of chronic hepatitis B in 2023, but experts say it’s likely a fraction of the true number.
“There are far too many people living undiagnosed and, therefore, untreated for hepatitis,” said Dr. Kaitlan Baston, the state health commissioner. “Getting tested is the only way to know if you have hepatitis so you can get available treatments.”
Focus on screening, treatment and adult vaccinations
Many hospitals are making forays into the state’s burgeoning Asian community, which makes up about 11% to 12% of New Jersey’s population — one of the highest percentages in the nation along with California, New York and Hawaii.
Screening, treatment and even adult vaccinations are a big focus of Englewood Health’s Asian Health and Wellness center. The staff at the center in Englewood Cliffs sometimes have to appeal to patients to be screened because of the stigma surrounding the virus.
“Diseases and chronic conditions, including hepatitis B, are often seen as shameful, leading to denial or avoidance of medical care,” said Dr. Samuel Bae, a gastroenterologist at Englewood Health.
The center’s staff speak Korean and Chinese, which “greatly aids in educating those who might be hesitant to discuss certain health issues,” Bae said. “Thankfully, younger generations of [Asian Americans and Pacific Islanders] tend to be more open and proactive about addressing these health concerns.”
A professor of molecular biology at Rutgers Robert Wood Johnson Medical School, Jacki Chen began feeling unusually tired after a day spent standing in the classroom and laboratory. He knew hepatitis B ran in his family when his brother, A-kun, developed liver cancer in Taiwan from the virus in the early 1990s. It was caught early and, with a combination of surgery and treatment, it was brought under control.
Chen was tested and came back positive. He began antiviral medication right away since he was at a high risk for liver cancer given his family history. His wife, Melody, tested positive too. When she became pregnant, she took antiviral medicine in her last trimester, and their son, Leif, was immunized right away. He has never developed hepatitis B.
Chen began to learn that more friends in his native Taiwan and closer to his home in Princeton had hepatitis B. So he did what many do to reach the greatest amount of people: he took to social media.
Chen created a Facebook page to share advice and offer support to hepatitis B sufferers. It has grown to 13,000 members worldwide.
“Our advice is pretty much, if you’re healthy, you need to be screened and monitored,” he said. “If you are positive, you need to get treatment. All we can do is offer support and recommend a doctor, but that’s what a lot of these people need.”
Chen launched a nonprofit group last year in the U.S. called the Taiwan Hepatitis Information & Care Association that he hopes will appeal to immigrants from the island nation and all Asian Americans. Chen, along with friends and family, has gone to Capitol Hill to ask New Jersey’s congressional delegation — most notably Sen. Cory Booker’s staff — to lobby for more funding into hepatitis B research.
“We are so new to this,” Chen said. “But we contribute what we can and hopefully it will help more people.”