Addressing the silent epidemic of hepatitis B

Cancer impacts all of us. It appears silently, sometimes quickly, and does its best to shake up your life.

Recently, the American Cancer Society, the Centers for Disease Control and Prevention, the National Cancer Institute, and the North American Association of Central Cancer Registries released their annual report on cancer, with a special emphasis on the disease burden of liver cancer. The findings were sobering: according to the report, liver cancer death rates are the highest of all cancers; in 2012 alone, nearly 23,000 people died from liver cancer complications.

Chronic viral hepatitis B and C infections are leading causes of liver cancer, accounting for about 60 percent of liver cancer cases. In the United States, almost 2.2 million people have chronic hepatitis B (HBV), and about 350 million people are infected with chronic hepatitis B worldwide, according to the World Health Organization (WHO). In the 22 years that I have worked in public health, I have heard countless stories not only of high HBV prevalence rates within the populations that AAPCHO’s community health centers serve, but also of the countless barriers that patients face due to stigma and the lack of education about hepatitis B, including its dangerous link to liver cancer.

Hepatitis B disproportionately affects Asian and Pacific Islander Americans (AAPIs), but also impacts people from Sub-Saharan Africa, South America and the Caribbean who have immigrated to the United States—some of who came to this country decades ago. As such, we cannot feed into the growing anti-immigrant sentiment by pinning the presence of hepatitis B, which infects our most vulnerable residents regardless of their country of birth, on “new” Americans.

Grouping AAPIs together also masks key differences in liver cancer and HBV prevalence between groups. Persons who identify as AAPIs include persons born in over 40 Asian countries and 19 Pacific Islands. These populations have varying rates of liver cancer, but we cannot determine the impact of hepatitis B on the Vietnamese American population, for example, because of the lack of disaggregated race and ethnicity data. This is one of the most troubling shortfalls of national datasets: we simply do not know who is most at risk and most significantly impacted.

The good news is that getting tested for hepatitis B can help many people access lifesaving treatments that can prevent serious liver damage. Testing is the only way to know if someone has hepatitis B. And yet, this report tells us that too many at-risk Americans are not getting tested or properly linked to care.

This year’s annual report is an important first step to elevate the dialogue about the link between liver cancer and viral hepatitis. We need to continue this dialogue and work together to promote understanding and action to combat HBV stigma and discrimination. We need to get people vaccinated, tested, and into appropriate care. Let’s make sure to address people affected by hepatitis B as Americans and not as “immigrants” or “others.”

It’s time we unmask the underlying racism that exists in our national data collection approach, and address an urgent public health issue that impacts all of us as Americans, equally.

Caballero is executive director of the Association of Asian Pacific Community Health Organizations (AAPCHO) and co-chair of Hep B United.