Talking About Hepatitis B and HIV: Working to End the Stigma

Talking About Hepatitis B and HIV: Working to End the Stigma
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Co-authored by Isha Weerasinghe, AAPCHO hepatitis B policy fellow

Have you ever felt like you could be in someone else's shoes? That's what Mei felt when she was faced with the decision of whether to be a HIV test counselor, the same time she found out that she tested positive for the hepatitis B virus (HBV). Mei wondered about similar questions that individuals with HIV might ask themselves: "How will I tell my family? My friends? My partner?" She took the job, using her experience as someone who is infected with HBV, to help relate to others when they find out they are HIV-positive.

May 19 was both National Hepatitis Testing Day and National Asian & Pacific Islander HIV/AIDS Awareness Day. Both hepatitis B and HIV have stigmatizing effects within Asian American and Pacific Islander (AAPI) communities, and both are often misunderstood. Estimates of persons with chronic hepatitis B in the United States range from 1.32 to 2.2 million, and 1 in 12 AAPIs has hepatitis B. AAPIs also have the lowest HIV testing rates of any other racial/ethnic group, partly due to the lack of culturally and linguistically specific materials and services. In an Asian family like Mei's, she finds it difficult, years after being diagnosed, to speak with her family about hepatitis B openly. She still keeps her status quiet among certain family members whom she feels may think ill of her. Mei says this is similar, if not more enhanced, in AAPIs who are HIV-positive, where no one wants to talk about HIV because it is primarily considered a sexually transmitted disease.

Stigma continues to be a large concern for those who are positive with hepatitis B or HIV. Mei states, "If there [was] more of an effort to talk about [HBV] in the community, it would diffuse stigma." We need to talk more about hepatitis B and HIV, within and outside of our families and communities, to help educate not only those populations at higher risk, but also the general population. Those who are at risk for hepatitis B, and for HIV, who are fearful or less trusting of the health system, need to feel comfortable enough to get tested, and to get into care. Talk to your friends and family about hepatitis B and HIV. Someone you know may be the one in 12 that has HBV.


  1. Pseudonym used here to preserve identity.

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