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Like many Asian Americans and Pacific Islanders, University of Texas student Ver Starr didn’t know much about viral hepatitis when his fraternity decided to make the disease the focus of their Spring 2012 Philanthropy Week. Ver remembered getting vaccinated as a child, and he and his brothers had heard enough to know that Hepatitis B was a special concern for the AAPI community, but not much else. After he began planning for Philanthropy Week, though, he was astonished to learn that although AAPIs make up approximately 5% of the US population, we comprise over 50% of Americans with chronic Hepatitis B. This means approximately 1 in 12 AAPIs are living with Hepatitis B.
Unfortunately, he also learned that despite these alarming statistics, many AAPIs are not tested for Hepatitis B, and most of those living with the disease do not know it. For many, Hepatitis B is a "silent" disease, and decades can pass without any noticeable symptoms. Tragically, many people find out about the infection for the first time the same way Ver's high school friend's mother did, only after developing Hepatitis B-related liver cancer. For many patients, including Ver's friend's mother, it is often too late to save their lives.
According to the Centers for Disease Control, Hepatitis B-related liver cancer incidence is the highest among AAPIs by percentage, and a leading cause of cancer deaths in our community. AAPIs are also 7 times more likely to die from Hepatitis B than whites. Because many AAPIs lack knowledge and understanding of the disease and face barriers in accessing appropriate medical services, chronic Hepatitis B and associated liver cancer in AAPIs is one of the most serious health disparities in the United States.
So what does our community need to know about Hepatitis B, and what are we doing about it? First, it's important to understand how the disease works. Hepatitis B is transmitted through blood, sexual contact, and injection drug-use, not mere casual contact or sharing of food and drink; recent research has also revealed transmission risks in settings such as nail salons. For many AAPIs, the disease is spread from mother to child at birth; nearly 70% of AAPIs living the US were born, or have parents who were born, in countries where Hepatitis B is common. Screening is now routine for infants, and expanded vaccination programs have helped reduce new infections, but many immigrants and AAPIs born in the US before the 1990s have never been tested.
Once infected, there is no cure, but if discovered, the disease can be managed, and the risk of cancer or other complications can be significantly reduced. Vaccination can prevent uninfected individuals from getting the disease, but its ineffective if someone already has Hepatitis B. Therefore, our top priority is clear: Every AAPI should be tested for Hepatitis B. In fact, May 19, 2012 is the first ever national Hepatitis Testing Day. Only when we are armed with knowledge can we effectively reduce further transmission and save the lives of our loved ones living with Hepatitis B.
But we also know that just talking about testing isn't enough. AAPIs also need accessible, high quality, and culturally and linguistically competent resources for prevention, treatment, and monitoring. After a 2010 study by the Institute of Medicine of the National Academy of Sciences found serious shortcomings in resources and concluded that our approach to viral hepatitis needed a serious overhaul, Assistant Secretary for Health Dr. Howard Koh convened a working group to address the issues identified by the IOM report and its 22 specific recommendations. Community organizations and members worked with representatives and experts from the White House Initiative for Asian Americans & Pacific Islanders, Department of Health & Human Services, and other government agencies to develop the first ever comprehensive national viral hepatitis action plan. The result was the historic report Combating the Silent Epidemic of Viral Hepatitis: U.S. Department of Health
and Human Services Action Plan for the Prevention, Care and Treatment of Viral Hepatitis.
By 2020, we hope to achieve through full implementation of the viral hepatitis Action Plan:
There are also many amazing organizations, activists, and people like Ver who care and are working to educate our community about Hepatitis B and expand resources. Together, we can move the health of our community and our country forward.
Ramey Ko is Associate Judge of the City of Austin Municipal Court. He serves on the President’s Advisory Commission on Asian Americans and Pacific Islanders.