HIV-related stigma is the severe individual, family, and community shame or disgrace associated with HIV.
People living with HIV are blamed for getting the disease and are punished by exclusion, isolation, prejudice, and discrimination. They are often reduced to stereotypes—drug users, gay men, sex workers—with no regard for their individual experience.(1) In the Asian & Pacific Islander (A&PI) community, HIV-related stigma is so powerful that people avoid talking about sex or HIV entirely. This silence feeds the fear about HIV and misconceptions about how it's transmitted. For A&PIs, an HIV-positive test result can shame and disgrace the individual as well as the family and community.(2)
HIV-related stigma permeates every level of society, from the individual and family to the community and health care providers.
Co-workers and employers can socially isolate people living with HIV/AIDS, and may even terminate employment when they learn someone is HIV-positive due to fear.
In June of 2004, I tested positive for the HIV virus. I informed my bosses, I remember how they took the news with surprising calmness. They simply said, "sorry to hear that," and continued about business as usual.
Several days later, however, my supervisor summoned me outside. He handed me an envelope with my paycheck inside and told me that they were letting me go. I began to wonder if the reason for my dismissal was due to the fact that I revealed I was HIV positive. Could it be that they were afraid I might be a liability to them?
Attitudes about HIV/AIDS can restrict where people living with HIV live, go to school, or get treatment. People may mistakenly believe they can get HIV by sharing eating utensils or by casual contact like kissing or hugging.
"The government should put everyone with HIV on an island and blow it up." These very words were said by a man I chose to date. At the time, he was not aware that I was HIV positive. When I was emotionally prepared to reveal my status to him, he reacted with shock and anger. I was accused of tricking him into liking me. My status suddenly became his personal epidemic: "I accidentally used your toothbrush and my gums were bloody. I kissed you after I brushed my teeth." After months of testing, he is not HIV-positive. The fact is, I know my status and I know how to practice safe sex. But I have no other solution of combating HIV stigma in the world of love.
HEALTH CARE SETTINGS
Doctors or health professionals may discourage HIV testing because they believe their patients are not at risk for HIV (such as A&PI women). These issues are also compounded by language barriers, as A&PIs speak over 100 different languages.(11)
I knew that I had been in a few risky sexual situations, so I wanted to get an HIV test. I went to my doctor, but he told me as an Asian woman, I wasn't really at-risk. "Don't worry about it," he said.
I tried to get tested three different times. Finally, I got an HIV test in another country. I was HIV-positive.
Family members often provide support for those who are sick. However, families will sometimes reject or disown relatives who are living with HIV or seek to hide the truth about their HIV status.
When I was diagnosed with HIV, my mother wanted to come home so she could take care of me. At first, I was relieved, but I soon realized that "taking care of me" really meant she wanted to keep me hidden. She wanted to sweep me and the shame of my HIV status under the rug. I know so many people who tested positive and ended up leaving the Bay Area for other cities just so their friends and families won’t find out they are living with HIV.
You can read stories from HIV-positive Asians & Pacific Islanders in our book, "You Can Change the Story." Visit our links page, where you can find more information on stigma and other topics.
Here are some other links to articles online about HIV-related stigma:
(1) Avert, "HIV & AIDS Stigma and Discrimination," no date. Last accessed April 4, 2013. Accessible at http://www.avert.org/hiv-aids-stigma.htm
(2) Kang E, Rapkin BD, Remien RH, et al. Multiple dimensions of HIV stigma and psychological distress among Asians and Pacific Islanders living with HIV illness. AIDS and Behavior. 2005;9:145-154.
(3) Ghosh C. Healthy People 2010 and Asian Americans/Pacific Islanders: Defining a baseline of information. American Journal of Public Health. 2003;93:2093-2098.
(4) Yoshioka MR & Schustack A. Disclosure of HIV Status: Cultural Issues of Asian Patients. AIDS Patient Care and STDs. 2001:15,2:77-82.
(5) Wilson PA, Yoshikawa H. Experiences of and responses to social discrimination among Asian and Pacific Islander gay men: Their relationship to HIV risk. AIDS Education and Prevention. 2004;16:68-83.
(6) Choi KH, Operario D, Gregorich SE, et al. Substance use, substance choice, and unprotected anal intercourse among young Asian American and Pacific Islander men who have sex with men. AIDS Education and Prevention. 2005;17:418-429.
(7) Ibid (1).
(8) Chin JJ, Kang E, Haejin Kim J, et al. Serving Asians and Pacific Islanders with HIV/AIDS: Challenges and lessons learned. Journal of Health Care for the Poor and Underserved. 2006;17:910-927.
(9) ML Campsmith, PH Rhodes, HI Hall, and others. Undiagnosed HIV Prevalence Among Adults and Adolescents in the United States at the End of 2006. Journal of Acquired Immune Deficiency Syndromes April 2010 53(5): 619-624.
(10) Schiller JS, Lucas JW, Ward BW, Peregoy JA. Summary health statistics for U.S. adults: National Health Interview Survey, 2010. National Center for Health Statistics. Vital Health Stat 10(252). 2012:136. Accessible at http://www.cdc.gov/nchs/data/series/sr_10/sr10_252.pdf
(11) APIAHF (2004). Diverse Communities, Diverse Experiences: The Status of Asian Americans And Pacific Islanders in the U.S. San Francisco, CA: Asian & Pacific Islander American Health Forum.
(12) Centers for Disease Control and Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. Epidemiologic Profile 2010: Asians and Native Hawaiians and Other Pacific Islanders. Atlanta, GA: Centers for Disease Control and Prevention. 2012:55.
(13) Centers for Disease Control and Prevention. HIV Surveillance Report, 2009; vol 21. http://www.cdc.gov/hiv/topics/surveillance/resources/reports/. Published February, 2011, Accessed June 21, 2011.
(14) Ibid (9).