This story is a condensed version of the Public Press’ Hepatitis B series. It was produced by American Community Media, which also provided translations. Read this story in other languages:
Kẻ Giết Người Thầm Lặng: Viêm Gan B Ảnh Hưởng Nặng Nề Đến Người Mỹ Gốc Á
Ang Tahimik na Pumapatay: Ang Hepatitis B ay Di-pantay na Nakakapinsala sa mga Asyanong Amerikano
This reporting was supported with a California Health Equity Fellowship from the USC Annenberg Center for Health Journalism and a grant from the Pulitzer Center.
If it weren’t for his wife suggesting a physical check-up before their wedding, it might have taken years for Tony Lau, a contractor who moved to San Francisco in his teens, to find out he had chronic hepatitis B — a long-term viral infection that can cause liver damage.
“I’m not the type to go see a doctor for no reason,” Lau said.
When Lau was diagnosed at 28, he had been healthy most of his life, seeing doctors only on rare occasions for things like injuries from playing basketball. That’s the tricky part about this illness: It is largely asymptomatic, with fatigue often being the only noticeable sign, making it easy to overlook. This is why experts often call chronic hepatitis B a “silent killer,” even though effective antiviral therapies exist to slow the disease’s progression.
If Lau hadn’t gotten screened and treated when he did, he might have joined the 1 in 4 hepatitis B victims who develop irreversible liver damage.
Hepatitis B is widely misunderstood, a problem worsened by insufficient screening and detection. Chronic hepatitis B isn’t as consistently detected as are acute cases, allowing the disease to frequently progress unchecked and do more damage. According to the World Health Organization, only 13% of those living with the virus know they have it, leaving many, especially in immigrant and marginalized communities, undiagnosed and without access to timely treatment.
While there is not yet a cure for the infection, there is a daily drug treatment which can keep the virus under control and lower the chances of liver damage. But when the disease goes undetected and progresses to liver cancer, a transplant may be the only option. Thus, early screening is critical.
Racial disparities
Asian Americans, Pacific Islanders and immigrants from sub-Saharan Africa are significantly overrepresented among chronic hepatitis B patients in the United States, a racial disparity that persists despite decades of advocacy.
Asian Americans, who make up 7% of the U.S. population, account for more than half of all chronic hepatitis B cases. Roughly 70% of infections occur in people born abroad, particularly in Asia, the Pacific Islands and Africa, according to data from the Centers for Disease Control and Prevention.
CDC data also shows that Asian Americans and Pacific Islanders are 11 times more likely to be affected by chronic hepatitis B than non-Hispanic white individuals. In California, Asian American and Pacific Islander residents are 15.5% of the population but accounted for more than half of all newly reported chronic hepatitis B cases between 2017 and 2021.
A movement to boost data collection and screening for hepatitis B has emerged in the past three years, but progress remains slow due to what advocates say is chronic underfunding.
Is there a cure?
Dr. Maurizio Bonacini, a gastroenterologist at UCSF, is directing one arm of a 72-week-long, triple-drug therapy study that backers hope will cure many patients of chronic hepatitis B. He projected that the B-United international trial, funded by GSK, could conclude by 2027.
“The FDA can give accelerated review, which takes less than six months. Otherwise it will be a year or two, so not before 2029,” he said.
The B-United trial involves injections of two molecules to reduce the amount of hepatitis B virus circulating in the patient’s body. Twenty-four weeks after the injections, a drug called Bepirovirsen is introduced. Bepirovirsen has been proven to cure about 10% of patients when used alone.
“With the new protocol, they expect a cure rate that will go from 20% at the lowest end to 50% of patients that have lower level of virus,” Bonacini said.
Recruiting for clinical trials has proven to be easiest among more highly educated, middle-class patients. Bonacini’s efforts to recruit Asian American and Pacific Islander participants of various income levels have seen limited success.
“My expectation is that when people with hep B will realize that a cure is possible, they will be greatly interested in clinical trials that will have better and better outcomes,” he said.
Trump’s funding cuts
The Trump administration’s slashing of medical research funding threaten progress toward a cure for hepatitis B. The budget calls for $1.8 billion in cuts to the National Institutes of Health and the elimination of all federal funding for the National Institute on Minority Health and Health Disparities, along with additional cuts to the Food and Drug Administration, which has final say on approving new drugs and treatments.
In April, the nation’s leading hepatitis testing lab in Atlanta was also shut down due to the Trump administration’s workforce cuts at the Department of Health and Human Services. Chari Cohen, president of the Pennsylvania-based Hepatitis B Foundation, warned that this significantly weakens the country’s ability to analyze data and detect viral hepatitis outbreaks. The closure might also hamper efforts to address outbreaks like the recent spike of hepatitis A cases in Los Angeles in May.
While chronic hepatitis B is a reportable disease, meaning local healthcare providers and laboratories must notify state and local public health departments when they detect an infection, the data collected doesn’t show a comprehensive picture of the disease, Cohen said.
The tracking system for chronic hepatitis B is under-resourced, she said, which hinders analysis and understanding of the disease’s scope. Research suggests up to 80% of those infected likely remain undiagnosed.
The Centers for Disease Control and Prevention’s Division of Viral Hepatitis relies on data from state and local health departments, but data collection methods vary with local resources. Some jurisdictions collect more detailed information than others. For instance, California, a state with a large Asian and Pacific Islander population and a significant burden of chronic hepatitis B, started only in 2021 to report newly confirmed chronic hepatitis B cases to the CDC on an annual basis.
Prevention
Most of the public health efforts around hepatitis B have centered on preventing infections, primarily by vaccinating kids and screening pregnant women to prevent mother-to-child transmission. These efforts have seen some success, said Dr. Amy Tang, director of immigrant health at North East Medical Services, which serves many Asian Americans in the Bay Area.
“But,” she added, “we still have a large number of adults who either don’t know about their infection or who do have the infection and need surveillance.”
Over the past decade, progress in reducing hepatitis B-related deaths among Asian Americans and Pacific Islanders has been minimal, with their rates remaining significantly higher than those for other racial and ethnic groups.
Universal Screening
A key to understanding hepatitis B is expanding screening efforts. For years, hepatitis B testing has been absent in many medical settings, resulting in a significant gap in detection and treatment.
A California Assembly bill approved in 2021 requires primary care physicians to offer hepatitis B and C tests to at-risk individuals, including those born in Central and Southeast Asia and sub-Saharan Africa. In 2023, the CDC updated its guidelines to recommend that all adults get screened at least once through a simple blood test.
One type of institution has long-established universal hepatitis B screening: community-based hospitals in San Francisco. Though the city lacks strong public health surveillance for chronic hepatitis B, it remains home to community-based hospitals like Chinese Hospital and North East Medical Services, which provide screening as a matter of course, as well as culturally sensitive service and outreach.
San Francisco Hep B Free
In the early 2000s, a wave of unexpected deaths at early ages from hepatitis B shocked the Asian American community. In response, in 2007 local community leaders and physicians formed San Francisco Hep B Free, which recently changed its name to Hep B Free. The coalition brought together government officials and representatives from all major hospitals and health care providers in the region to meet regularly to discuss the illness.
Stuart Fong, who worked at Chinese Hospital at the time, was one of the founding members of the coalition. He helped launch a hepatitis B program at Chinese Hospital that offered free community screenings. Fong said staff would set up tables at community events to reach more residents.
Richard So, the new leader of the coalition, is working to revive those efforts. He and collaborators are developing a handbook detailing how health care providers deliver universal screening, so others can replicate it.