Chronic hep B carries a heavy stigma in Asian immigrant communities, but the silence can prove deadly

When I began the reporting on chronic hepatitis B, an illness that disproportionately affects Asian immigrant communities, I was often asked why I wanted to look into the disease now.

It isn’t a new public health issue, and there haven’t been major breakthroughs in addressing this long-term viral infection. Treatments exist to help manage it, but a cure has yet to be found. Mandatory newborn vaccination has made a difference, but screening remains so inadequate that researchers must rely on estimates to understand the scope of the illness. There’s no sudden, headline-grabbing dramatic spike in deaths either, yet the national goal of reducing mortality related to hepatitis B has gone unmet for years.

The disease’s low priority in public health reflects the nature of hepatitis B itself. It’s called a “silent killer” for a reason: as a chronic condition, it is often asymptomatic, meaning many people don’t get tested or treated. But over time, this quiet progression can lead to severe, and sometimes fatal, liver damage.

My reporting began with what seemed like a simple question: How severe is this illness? I quickly learned that although hepatitis B, as a viral infection, is required to be monitored and tracked, the system for identifying and following chronic cases is fragmented and underfunded. Even after an initial screening, several additional steps are needed to confirm a chronic infection. To classify a case as chronic, researchers need more information: clinical details, and different or repeat test results taken months apart. Without these pieces, cases often remain unconfirmed and uncounted. One hepatologist told me that every extra step in the diagnostic process becomes a point where patients can slip through the cracks, and many do.

Although there is no cure for chronic hepatitis B, it is both treatable and preventable. An effective vaccine has been routinely given to most American newborns since the early 2000s. Yet the illness remains a major public health concern, especially among immigrants, particularly those from Asian and Sub-Saharan African countries.

Many Asian immigrant communities carry a deep stigma around chronic hepatitis B. The virus can be transmitted through sexual contact or through blood and other bodily fluids, but most people in these communities were actually infected at birth. Still, myths persist about how it spreads and how it should be managed, leading to practices that have no medical basis and often isolate people living with the infection.

Sources told me about the real-life consequences of this stigma: one person was denied life insurance; another was advised not to kiss their own children; others were excluded from sharing family meals, despite sharing the same meal in a family style is part of their culture. These experiences make it even harder for people to speak openly about living with hepatitis B, which in turn perpetuates myths and stigma around the illness even more. “Many people don’t even want to know if they have it,” one doctor told me.

Given these challenges, I approached physicians first in hope to connect with as many people living with chronic hepatitis B as possible. I offered to keep the conversations off the record until we had built trust and they felt comfortable speaking to the media. My experience as a beat reporter covering the Asian community in San Francisco proved unexpectedly helpful: one of the people I was referred to was someone I had met before at community events, and he already knew my work. I had no idea he had been managing the condition. That encounter underscored that chronic hepatitis B can be so prevalent that it affects people all around us, yet it’s rarely spoken about.

When I first began this story, I hoped to uncover just how serious and deadly the illness is. But as I dug deeper, I realized the bigger issue is not only the disease itself — it’s the silence that surrounds it. Hepatitis B remains invisible in part because the communities most affected are marginalized, and that invisibility makes it harder for the illness to be properly understood, prioritized, and addressed. The quieter it is kept, the harder it becomes to break the cycle. As part of the community engagement effort, I tabled at local events and spoke with people from all walks of life. I learned that many people, including that some in the medical field, still carry outdated or limited understanding of the illness. Many community members, especially immigrants with limited English proficiency, told me they had heard about hepatitis B and were afraid of it, yet didn’t know that effective treatment exists or that getting tested can prevent the chronic infection from progressing into fetal liver damage.

Three years ago, the CDC added a recommendation for all adults to receive universal hepatitis B screening at least once in their lives. In California, a new law requires primary care providers to screen at-risk patients. In San Francisco, where local Asian communities have seen how the illness affected them decades ago, grassroots organizations that once partnered with government agencies and hospitals to raise awareness are restarting their efforts to expand universal screening.

One impact from my series emerged shortly after the first story was published: the San Francisco Department of Public Health released a new surveillance report on chronic hepatitis B, the very report I had been requesting for months. Since March, I had repeatedly asked the department for updated data. Until then, the most recent publicly available numbers were from 2016. Although the city had made significant progress in tracking another viral hepatitis in recent years, no new information on chronic hepatitis B had been published in nearly a decade. That gap left local physicians and researchers without a clear understanding of current trends, making it difficult to gauge the true scope of the illness or respond effectively.

The experience of uncovering the silence surrounding this deadly chronic infection taught me that sometimes the most important stories hide in plain sight. In my reporting, several sources pointed back to a major awareness campaign in San Francisco more than 20 years ago, launched after a series of deaths among young Asian Americans alarmed the community. Yet since then, there has been little sustained attention on chronic hepatitis B, and many of the same problems, such as stigma, lack of screening, and widespread misinformation, remain largely unchanged.

I also learned the importance of continuing to follow a story even after the main reporting project is published. Months after the series was published, a CDC advisory panel voted to eliminate long-standing guidelines recommending the routine vaccination of newborns for hepatitis B, which public health experts say have been crucial in preventing infections from becoming chronic. Without universal vaccination, this preventable viral infection can progress unnoticed and become deadly, especially given that, as my reporting showed, universal screening is still new and inconsistently enforced.

Staying with this story allowed me to show how decisions made long after the headlines fade can still have profound consequences for public health.