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Policy Facts: AIDS-Related Stigma

January 2001

According to the Centers for Disease Control and Prevention (CDC), 900,000 people are estimated to be living with HIV and AIDS in the United States. Since the early 1980s, 438,795 people have died of AIDS in the United States. People living with HIV/AIDS face discrimination and stigma that are associated with the disease and that hinder HIV prevention efforts. The stigma surrounding HIV/AIDS stems not only from the serostatus of an individual, but also from social responses to behaviors and lifestyles that are associated with the disease.

Fear of the Unknown

Stigma finds its roots in fear. Many Americans have misconceptions about the way HIV is transmitted. A recent study found that 58% of African-Americans and 42% of Caucasians believe that there is a strong chance of contracting HIV during sex between two uninfected homosexual men. The same study also found that 27% of African-Americans and 13% of Caucasians assumed HIV could be transmitted through injection drug use without needle sharing.

Stigma affects all aspects of life for people living with HIV and AIDS including housing, employment, and public and private relationships. Recently, the CDC reported that 19% of Americans believe that people who have transmitted HIV through sex or drug use have gotten what they deserve. Although there has been a sharp decline in stigma responses from previous years, 40% of Americans responded that HIV transmission could occur through sharing a glass, and 41% thought they could contract the virus from being coughed or sneezed on by an HIV-infected person. Despite public education efforts, these figures reveal that there are still misconceptions surrounding HIV transmission. In addition, the initial response to AIDS as a gay disease has magnified homophobia in the United States. Gay and bisexual men living with HIV/AIDS face perpetual biases and tend to receive less sympathy than heterosexual men and women with the disease regardless of the method of HIV transmission.

Effects on Communities of Color

People of color comprise approximately 60% of all new AIDS cases according to the CDC. AIDS remains the leading cause of death for African-Americans aged 25-44. The increase in HIV/AIDS related deaths has prompted leaders such as Reverend Jessie Jackson Sr. to address not only HIV/AIDS, but also the stigma attached to the disease. The CDC reports that prevention efforts in the African-American community are hindered by a reluctance to talk about risk factors and HIV transmission because of the stigma attached to risky behaviors. The CDC also found that the stigma of homosexuality contributes to higher disease rates among communities of color. African-American and Latino men who have sex with other men are less likely than whites to identify themselves as gay. A survey of 8,780 HIV-infected men revealed that only 24% of African-American men and 18% of Latinos equated homosexuality with having sex with other men.


Social Disapproval

Those with HIV/AIDS face social disapproval regardless of how the disease was transmitted. Case after case reveals the potent reality of discrimination and stigma attached to the disease. In 1998, an eight-year old girl was refused admission to all Girl Scout troops in the New York area because she was HIV positive. More recently, a Virginia boy was denied a spot in a karate class when his instructor insisted his participation would pose a threat to the health and safety of other students in the class. The Supreme Court ruled in favor of the instructor, which reinforced and confirmed many misperceptions around HIV/AIDS transmission. It is important to note that a person cannot transmit the HIV virus through causal contact or insect bites.

In many public areas, stigma lingers among co-workers, neighbors, and classmates of people living with HIV. A public opinion poll found that one in four people did not want HIV positive people in the same workplaces, neighborhoods, or schools. In the workplace, there are improvements among top companies such as Ford and Fox Entertainment, which include HIV/AIDS education classes and staff orientations to educate workers about HIV transmission. However, many employers do little. According to a survey by the National AIDS Fund, only 18% of workers questioned report that their employers provide HIV/AIDS education or literature, although 73% of working Americans are in favor of receiving information about HIV/AIDS in the workplace. Stigma is also prevalent is health care facilities. A survey found that health care professionals preferred to care for patients who have contracted HIV through a blood transfusion as opposed to other routes of transmission. Many health care professionals are not always knowledgeable about the available drugs and treatment for those with HIV/AIDS.

Stigma Obstructs Prevention Efforts

Stigma has hampered prevention efforts and has ongoing implications for AIDS policy. The magnitude of stigma has had the most detrimental effect on HIV/AIDS testing. In 34 states, name reporting for those testing positive for HIV/AIDS is required. AIDS-related stigma deters people at risk for HIV/AIDS from getting tested, and therefore the disease can be unknowingly transmitted to sexual partners, other injection drug users, and newborns. Many fear that they will be ostracized and that their names will be shared with employers, neighbors, and friends. According to a recent study, people involved in high-risk behaviors are five to eight times less likely to get tested than people involved in low-risk behaviors. Two-thirds of gay and bisexual men claimed that they delayed testing because of the stigma surrounding the disease.

In the past, federal law has singled out HIV positive military personnel for discharge, although others with comparable medical conditions are allowed to serve. In addition, U.S. immigration laws prohibit immigrants with HIV/AIDS from entering the country except under specific circumstances. Opposition to needle exchange programs has contributed to the public perception of punishing those at high-risk for HIV transmission. Although the overwhelming scientific evidence demonstrates that needle exchange programs do not encourage drug use and decrease HIV transmission, many policymakers continue to oppose these programs.

Without unified responses from civic, legislative, and religious leaders to denounce stigma or the provision of the unvarnished truth about HIV transmission, prevention efforts will continue to have a limited effect. A current nationwide survey found that Americans who misunderstand how HIV is transmitted are more likely to discriminate against those with HIV/AIDS as well as groups and individuals associated with the virus. The survey results suggest that increasing the understanding of HIV transmission methods may improve the success of HIV prevention and care.

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This article was provided by AIDS Action Council.


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