James Kang moved to Milpitas from South Korea in his early 20s with his parents and younger sibling, to a diverse community that included Korean churches, grocers, restaurants, media and traditional medicine practitioners. Eventually, acupuncturists detected potential liver trouble.
“I ignored it, just like I ignored the knowledge that it would be better all around not to drink,” Kang, now in his 60s, said in Korean.
Ten years ago, he enrolled in California’s affordable insurance program and received a referral to Elizabeth Hwang, director of hepatology at the Santa Clara Valley Medical Center for Digestive and Liver Health. She was Korean and spoke the language, which helped break the news that came next.
Kang had swollen veins in his esophagus due to cirrhosis and a cancerous tumor in his liver that could not be removed because the organ was too damaged.
The cause? Chronic hepatitis B, a typically asymptomatic virus that leads to liver cancer in 1 of 4 cases. By the time patients realize they have a problem, they require serious medical intervention and a quarter die.
In the U.S., those of Asian or Pacific Islander descent — 6% of the total population — carry almost half of the infections. This means one in every 12 Asian Americans and Pacific Islanders has chronic hepatitis B, attributed to origins in high-risk countries before global public health measures became widely available.
Clinicians and prevention workers are now trying to eliminate what is known as one of the greatest racial health disparities in the nation from the Bay Area, home to many of the disproportionately affected communities. The challenge is reaching everyone with screenings and multilingual, culturally attuned education about a common but often stigmatized and underreported disease.
“Hepatitis B is a health tragedy that is sadly hidden in plain sight in Santa Clara County,” County Supervisor Betty Duong said in a statement.
Santa Clara County counted 13,254 new diagnoses from 2014 to 2023. Most of those are Asian American and Pacific Islanders. Among cases that included demographic information, 3,270, or 60%, of the infections were in people of Asian and Pacific Islander descent. By contrast, this group represents only 42% of the county’s residents.
The condition is easily preventable with a vaccination developed in the 1980s and available globally after recommendations by the World Health Organization in the 1990s. Though there isn’t a cure, treatment can reduce risk of cancer and transmission to others.
Yet, global researches say up to 2.4 million people in the U.S. may currently have the disease and most do not realize it, assuming medical workers automatically checked them for it. Others think they are safe after receiving vaccinations, but if they were already infected at the time, the shots didn’t work.
The county’s relatively new Vietnamese American Service Center offers Vietnamese and other underserved communities with hepatitis B awareness counseling, screenings and referrals conducted by staff proficient in Vietnamese and Spanish.
Richard So, executive director of Hep B Free, is leveraging the grassroots prevention network to reduce these numbers in the greater Bay Area.
“Something as simple as required universal screening in a place like California where Asians make a third of the population could help eliminate hepatitis B within one generation,” he said.
Like HIV, hepatitis B spreads through birth, blood and sex. The U.S. Department of Health and Human Services says 2% to 6% of those who contract the disease as adults develop chronic hepatitis B instead of antibodies after the body’s immune system resolves the virus in a few weeks.
Kang, who likely contracted hepatitis B from his mother as he was born, is among an estimated 90% of infected Asian and Pacific Islanders who contracted the disease at birth. Infants have a 90% chance of developing chronic hepatitis B from acute infections; children 1 to 5 have a 50% chance.
Everyone immigrating to the U.S. today must provide proof of hepatitis B vaccination or get vaccinated through a private health care provider. But So said there’s a broken link somewhere.
“How come new immigrants here have infections?” he asked, adding there’s no requirement for screenings outside of the health system– a critical step for identifying infections and ensuring infected people are not given vaccinations that won’t help.
Priyanka Kundu, who leads hepatitis B prevention programs for Santa Clara County’s health system, says state-mandated universal screening for adults receiving care is particularly pressing for anyone born before 1999, when vaccination requirements for school children became law.
Hwang, with Valley Medical, said liver cancer caused by chronic hepatitis B is one of very few diagnoses possible without cirrhosis. Thus, the county screens for liver cancer in hepatitis B patients starting at age 40 for men, 50 for women and after diagnosis for those of African descent or from African countries, regardless of age.
Addressing the worst consequences of the disease as the only transplant hepatologist across Santa Clara County’s four publicly funded hospitals, Hwang said those who aren’t engaging with health care still fall through the cracks.
Meanwhile, infections remain undiagnosed in those born before the late 1980s and early 1990s.
“Now, those people are in their thirties. That’s still young to me — they’re people who might not get medical care or diagnosed until later,” Hwang said.
Ahead of World Hepatitis Day on July 28, So, with Hep B Free, threw an awareness happy hour in San Francisco that included a research doctor searching for a cure. He encouraged donations to furnish free screenings and public messaging.
“Why don’t they just screen everyone? Prevention is always better,” said Kang, who joined the transplant wait list this spring after his liver tumor grew. He is undergoing treatments that blast liver masses with beta waves through an arterial catheter. The sessions last seven hours and knock him out all the next day.
Doctors warned even cancer removed by radiation could return.
“Of course I’m scared. In a word, it’s tough. But I also know I’m really lucky,” he said.
Everyone in Kang’s circles seems to know someone with liver cancer or a transplant, but are afraid to know whether they are sick themselves.
“Just get checked. Don’t be afraid. You need to know to get treatment and protection,” Kang urged.