AIDS and Stigma

Discusses AIDS-related stigma, which is a discrimination directed at people perceived to have AIDS or HIV. Manifestations of AIDS stigma in the United States; Effects of the stigma; Conclusion.

AIDS AND STIGMA

This article briefly reviews current knowledge about AIDS-related stigma, defined as prejudice, discounting, discrediting, and discrimination directed at people perceived to have AIDS or HIV, and the individuals, groups, and communities with which they are associated. AIDS stigma has been manifested in discrimination, violence, and personal rejection of people with AIDS (PWAs). Whereas the characteristics of AIDS as an illness probably make some degree of stigma inevitable, AIDS has also been used as a symbol for expressing negative attitudes toward groups disproportionately affected by the epidemic, especially gay men and injecting drug users (IDUs). AIDS stigma affects the well-being of PWAs and influences their personal choices about disclosing their serostatus to others. It also affects PWAs' loved ones and their caregivers, both volunteers and professionals. Stigma has hindered society's response to the epidemic, and may continue to have an impact as policies providing special protection to people with HIV face renewed scrutiny.

Ever since the first cases were detected in the United States in 1981, people with AIDS (PWAs) have been the targets of stigma. Press accounts and anecdotal reports from the early 1980s told stories of PWAs--as well as those simply suspected of having the disease--being evicted from their homes, fired from their jobs, and shunned by family and friends. Early surveys of public opinion revealed widespread fear of the disease, lack of accurate information about its transmission, and willingness to support draconian public policies that would restrict civil liberties in the name of fighting AIDS (Altman, 1986; Blake & Arkin, 1988; Clendinen, 1983; Herek, 1990).

After nearly two decades of extensive public education about HIV, one could hope that AIDS-related prejudice and discrimination would now be relics of the past. Unfortunately, this is not the case. In 1998, an 8-year-old New York girl was unable to find a Girl Scout troop that would admit her once her HIV infection was disclosed ("HIV-positive girl," 1998). In a 1997 national telephone survey, more than one fourth of the U.S. public expressed discomfort about associating with a PWA in a variety of circumstances (Herek & Capitanio, 1998). In 1996, federal legislation was enacted that singled out HIV-positive military personnel for discharge while ignoring other active-duty personnel with comparable serious medical conditions (Shenon, 1996).

Nor is the problem of AIDS stigma confined to the United States. In South Africa, an HIV-infected volunteer recently was beaten to death by neighbors who accused her of bringing shame on their community by revealing her HIV infection (McNeil, 1998). In India, AIDS workers report that people with HIV have become new untouchables who are often shunned by medical workers, neighbors, and employers (Burns, 1996). In rural Tanzania, having AIDS is often attributed to witchcraft and PWAs are frequently blamed for their disease (Nnko, 1998).

These are examples of AIDS-related stigma, a term that refers to prejudice, discounting, discrediting, and discrimination directed at people perceived to have AIDS or HIV, and the individuals, groups, and communities with which they are associated (Herek et al., 1998; see also Alonzo & Reynolds, 1995; Crawford, 1996; Herek, 1990; Pryor & Reeder, 1993). This article briefly describes current knowledge about AIDS-related stigma (or simply AIDS stigma) in the United States. It is not intended to provide a thorough literature review, but instead highlights some major findings about AIDS stigma and cites representative studies.

MANIFESTATIONS OF AIDS STIGMA IN THE UNITED STATES

AIDS is a global pandemic, and persons with HIV (PWHIVs) are stigmatized throughout the world to varying degrees. AIDS stigma around the world is expressed through social ostracism and personal rejection of PWHIVs, discrimination against them, and laws that deprive them of basic human rights (Mann, Tarantola, & Netter, 1992; Panos Institute, 1990). Although AIDS stigma is effectively universal, it takes different forms from one country to another and its specific targets vary considerably. This variation is shaped in each society by multiple factors, including the local epidemiology of HIV and preexisting prejudices within the culture. A consistent pattern is that stigma is often expressed against unpopular groups disproportionately affected by the local epidemic (Goldin, 1994; Mann et al., 1992; Panos Institute, 1990; Sabatier, 1988).

In the United States, a significant minority of the public has consistently expressed negative attitudes toward PWAs since the epidemic began and has supported authoritarian and punitive measures against them, including quarantine, universal mandatory testing, and even tattooing of infected individuals. Such attitudes have fluctuated in their prevalence, with support for punitive policies highest in the late 1980s (e.g., Blake & Arkin, 1988; Blendon & Donelan, 1988; Blendon, Donelan, & Knox, 1992; Herek, 1997; Herek & Capitanio, 1993; Herek & Glunt, 1991; Rogers, Singer, & Imperio, 1993; Schneider, 1987; Singer & Rogers, 1986; Stipp & Kerr, 1989).

Although diminished, many of the same attitudes persist today. In a 1997 national telephone survey, intentions to avoid PWAs in various situations and support for measures such as quarantine were lower than in previous years (Herek & Capitanio, 1998).

Compared to a similar survey conducted in 1991, however, more respondents in 1997 overestimated the risks of HIV transmission through casual contact and perceived PWAs as deserving their condition. Approximately one third expressed discomfort and negative feelings toward PWAs (for more findings from the survey, see Capitanio & Herek, 1999 [this issue]; Herek & Capitanio, 1999 [this issue]).

AIDS-related discrimination in employment, health care, insurance, education, and other realms has been widely reported since the early days of the epidemic. PWAs have been fired from their jobs, evicted from their homes, and denied services (e.g., Gostin, 1990; Hunter & Rubenstein, 1992). Discrimination continues to occur despite legal precedents and protective legislation (e.g., Burris, 1999 [this issue]; Gostin & Webber, 1998).

Stigma is manifested in its most extreme form when people perceived to be infected with HIV are physically attacked. In a 1992 survey of 1,800 people with HIV, 21% of respondents reported that they had experienced violence in their communities because of their HIV status (National Association of People With AIDS, 1992; see also National Workshop on HIV and Violence, 1996).

THE SOCIAL PSYCHOLOGY OF AIDS STIGMA

A considerable amount of empirical research has focused on attitudes of the uninfected toward PWHIVs and AIDS-related policies. In these studies, AIDS stigma is conceptualized as a psychological attitude or a facet of public opinion. Even a cursory examination of the literature in this area quickly reveals that AIDS-related attitudes have been conceptualized in many different ways, including affective reactions to PWAs, attributions of blame and responsibility to PWAs, willingness to interact with PWAs, and attitudes toward laws and public policies related to AIDS (e.g., Capitanio & Herek, 1999; Herek & Capitanio, 1999; Pryor, Reeder, & Landau, 1999 [this issue]).

A variety of social, psychological, and demographic variables have been found to correlate with AIDS-related attitudes. Among the most consistent correlates have been age, education, personal contact with PWAs, knowledge about HIV transmission, and attitudes toward homosexuality (e.g., Gerbert, Sumser, & Maguire, 1991; Herek & Capitanio, 1997; Price & Hsu, 1992; Stipp & Kerr, 1989). Younger and better-educated respondents consistently manifest lower levels of AIDS stigma than older respondents and those with lower levels of education. Similarly, uninfected people who personally know a PWA generally manifest less AIDS stigma than others. Attitudes toward PWAs tend to be more favorable and attitudes toward AIDS-related policies less restrictive to the extent that respondents have more favorable attitudes toward gay people and are knowledgeable about the lack of risk of HIV transmission through casual social contact (Capitanio & Herek, 1999; Herek & Capitanio, 1999; Pry or et al., 1999).

Some data reveal racial and ethnic differences in AIDS stigma. Members of racial and ethnic minority groups--mainly African Americans and Hispanic Americans--appear more likely than non-Hispanic White Americans to overestimate the risks of HIV transmission through casual contact and to endorse policies that would separate PWAs from others (Alcalay, Sniderman, Mitchell, & Griffin, 1989-1990; Herek & Capitanio, 1993, 1997, 1998; Herek & Glunt, 1991; McCaig, Hardy, & Winn, 1991). Such patterns may reflect differences in the credibility that minority group members attach to official AIDS information (Herek & Capitanio, 1994), which in turn have multiple cultural and historical roots (e.g., Herek & Glunt, 1993; Stevenson, 1994; Turner, 1993).

In trying to explain the social psychology of AIDS stigma, it is useful to recognize that, as a disease, AIDS manifests at least four characteristics likely to evoke stigma (Goffman, 1963; Jones et al., 1984). First, stigma is more often attached to a disease whose cause is perceived to be the bearer's responsibility. To the extent that an illness is perceived as having been contracted through voluntary and avoidable behaviors--especially if such behaviors evoke social disapproval--it is likely to be stigmatized and to evoke anger and moralism rather than pity or empathy (Weiner, 1993). Thus, because the primary transmission routes for HIV are behaviors that are widely considered voluntary and immoral, PWHIVs are regarded by a significant portion of the public as responsible for their condition and consequently are stigmatized (e.g., Herek & Capitanio, 1999).

Second, greater stigma is associated with illnesses and conditions that are unalterable or degenerative. Since the earliest days of the epidemic, AIDS has been widely perceived to be a fatal condition (Blake & Arkin, 1988). Being diagnosed with such a disease is often regarded as equivalent to dying, and those who are diagnosed may represent a reminder--or even the personification--of death and mortality (e.g., Stoddard, 1994). New drug regimens have offered realistic hope that HIV disease may be transformed from a fatal malady to a chronic illness. Those medicines, however, are not effective for all who take them, and many PWHIVs do not have access to antiviral drugs. Thus, despite the development of increasingly effective therapies, AIDS will probably continue to be perceived as a fatal disease by most of the U.S. public for the foreseeable future.

Third, greater stigma is associated with conditions that are perceived to be contagious or to place others in harm's way. Perceptions of danger and fears of contagion have surrounded AIDS since the beginning of the epidemic (Herek, 1990), and are evident in Americans' continuing overestimation of the risks posed by casual contact (Herek & Capitanio, 1998, 1999). Fourth, a condition tends to be more stigmatized when it is readily apparent to others--when it actually disrupts a social interaction or is perceived by others as repellent, ugly, or upsetting. In this regard, the advanced stages of AIDS often dramatically affect an individual's physical appearance and stamina, evoking distress and stigma from observers (e.g., Klitzman, 1997).

Given these characteristics, AIDS probably would have evoked stigma regardless of its specific epidemiology and social history. Yet the character of AIDS stigma in the United States derives from the widely perceived association between HIV and particular sectors of the population, especially gay and bisexual men and injecting drug users (IDUs). Recognizing this fact, social psychologists have postulated several theories of AIDS stigma (Herek, 1999; Pry or et al., 1999). Many of these models describe two sources for individuals' attitudes: (a) fear of AIDS as an illness and an accompanying desire to protect oneself from it, and (b) symbolic associations between AIDS and groups identified with the disease.

Instrumental AIDS stigma results from the communicability and lethality of HIV. It reflects the fear and apprehension likely to be associated with any transmissible and deadly illness. It is perhaps best illustrated by the experiences of people who acquired HIV through receiving blood products. Compared to gay men and drug users, such individuals were not previously highly stigmatized by society (although many faced some degree of illness-related stigma). After the onset of AIDS, however, they often faced rejection and isolation because of others' fears about the spread of HIV through casual contact (e.g., Kinsella, 1989).

Symbolic AIDS stigma results from the social meanings attached to AIDS. It represents the use of the disease as a vehicle for expressing a variety of attitudes, especially attitudes toward the groups perceived to be at risk for AIDS and the behaviors that transmit HIV. Historically, symbolic AIDS stigma in the United States has focused principally on male homosexuality, and much of the American public continues to equate AIDS with homosexuality to a significant extent (Herek, 1999; Herek & Capitanio, 1999). At the same time, some segments of society have had different experiences with the epidemic and, consequently, have different symbolic associations for AIDS. In the African American community, for example, AIDS has affected not only gay and bisexual men but also a substantial number of injecting drug users, with the consequence that symbolic AIDS stigma is closely related to attitudes toward the latter as well as the former (Capitanio & Herek, 1999; Fullilove & Fullilove, 1999 [this issue]).

THE PERSONAL IMPACT OF AIDS STIGMA

In the 1997 national survey mentioned above, more than three fourths of respondents expressed the belief that people with AIDS are unfairly persecuted in our society (Herek & Capitanio, 1998). The widespread expectation of stigma, combined with actual experiences with prejudice and discrimination, exerts a considerable impact on PWHIVs, their loved ones, and caregivers. It affects many of the choices that PWHIVs make about being tested and seeking assistance for their physical, psychological, and social needs (Alonzo & Reynolds, 1995; Chesney & Smith, 1999 [this issue]; Hays et al., 1993; Klitzman, 1997; Lester, Partridge, Chesney, & Cooke, 1995; Lyter, Valdiserri, Kingsley, Amoroso, & Rinaldo, 1987; Siegel & Krauss, 1991). For example, fear of AIDS stigma and its attendant discrimination may deter people at risk for HIV from being tested and seeking information and assistance for risk reduction (Chesney & Smith, 1999).

In addition to the negative effects of experiencing outright rejection and persecution, AIDS stigma has considerable impact on PWHIVs' decisions about disclosing their health status to others. Fearing rejection and mistreatment, many PWHIVs keep their seropositive status a secret (Gielen, O'Campo, Faden, & Eke, 1997; Hays et al., 1993; Klitzman, 1997). Whereas a desire to set boundaries and control others' access to information about one's personal life--including one's health status--is an important consideration (Greene & Serovich, 1996), hiding one's HIV-positive status can lead to isolation at a time when social support is badly needed (Crandall & Coleman, 1992; Johnston, Stall, & Smith, 1995). Nondisclosure may also reflect an internalizing of societal stigma by PWHIVs, which can lead to self-loathing, self-blame, and self-destructive behaviors (Herek, 1990; Klitzman, 1997). Nondisclosure to a sexual partner, especially when the PWHIV fails to ensure that safer sex guidelines are strictly followed, raises multiple ethical questions (Bayer, 1996).

The loved ones of PWAs also are at risk for AIDS stigma and its negative effects. They, too, often face ostracism and discrimination because of their association with a PWHIV. This courtesy stigma (Goffman, 1963) can leave them without adequate social support (Folkman, Chesney, & Christopher-Richards, 1994; Folkman, Chesney, Cooke, Boccellari, & Collette, 1994; Jankowski, Videka-Sherman, & Laquidara-Dickinson, 1996; Paul, Hays, & Coates, 1995; Poindexter & Linsk, 1999). Caregivers and advocates for PWAs, whether professionals or volunteers, also risk courtesy stigma, which may deter them from working with PWHIVs entirely or make their work more difficult (Snyder, Omoto, & Crain, 1999 [this issue]).

AIDS STIGMA AND PUBLIC POLICY

The politics of AIDS stigma have repeatedly hindered society's response to the epidemic (Panem, 1988; Shilts, 1987). Mass media were initially slow to report on AIDS, probably because of its prevalence among already stigmatized groups (Albert, 1986; Baker, 1986; Kinsella, 1989). Extensive resources that might otherwise have gone to prevention instead were needed to respond to coercive AIDS legislation whose purpose was primarily to stigmatize and punish PWAs (Bayer, 1989; Epstein, 1996; Herek & Glunt, 1993). Despite empirical data showing that needle exchange programs can play a valuable role in helping to reduce HIV transmission among IDUs without fostering increased drug use (Cross, Saunders, & Bartelli, 1998; Normand, Vlahov, & Moses, 1995; Watters, Estilo, Clark, & Lorvick, 1994), AIDS stigma and the stigma attached to injecting drug use have prevented the large-scale implementation of such programs (Bayer, 1989; Capitanio & Herek, 1999; Stolberg, 1998). Federal law and policy have consistently prevented AIDS educators from providing clear and explicit risk reduction information to individuals at risk (Bailey, 1995; Bayer, 1989; Epstein, 1996; Shilts, 1987), which probably have reduced the effectiveness of HIV prevention efforts. Indeed, some commentators have argued that stigma is the root cause of the HIV epidemic in the United States (Novick, 1997).

Recognition of the negative consequences of AIDS stigma for individuals and for public health led to the enactment of statutory protections for PWHIVs (Burris, 1999). In addition to barring most discrimination based on HIV status, HIV was exempted from traditional public health practices such as partner notification and contact tracing, a pattern labeled AIDS exceptionalism by some (Bayer, 1991, 1994). Moreover, whereas AIDS is a reportable disease nationwide, requirements for reporting HIV infections vary across states.

With the development of more effective treatments for HIV disease and a widespread perception that AIDS stigma has substantially declined, support for AIDS exceptionalism has diminished. National reporting of the names of HIV-infected persons is now strongly advocated by many leaders in public health (Gostin, Ward, & Baker, 1997). The assumption that stigma no longer represents a serious challenge in HIV policy may be premature, however. Given the widespread perception that people with AIDS are unfairly persecuted (Herek & Capitanio, 1998) coupled with distrust of government authorities in minority communities (Herek & Capitanio, 1994), it is possible that many people at risk for HIV infection could be deterred or delayed from being tested if they believe that their names will be reported to a government agency. Thus, a rush to institute the reporting of PWHIVs by name may have deleterious consequences for increasing HIV testing among the individuals at greatest risk for infection.

CONCLUSION

The association of stigma with disease is not a new phenomenon. Throughout history, the stigma attached to epidemic illnesses and social groups associated with them have often hampered treatment and prevention, and have inflicted additional suffering on sick individuals and their loved ones (e.g., McNeill, 1976; Rosenberg, 1987). In this sense, the AIDS epidemic has many parallels to older epidemics of cholera and plague (Herek, 1990). What differentiates AIDS from earlier epidemics is that today we have the collective insight to recognize stigma's impact on individual lives and public health, as well as the technology to scientifically study stigma and seek to reduce it (Devine, Plant, & Harrison, 1999 [this issue]). One of the great challenges of the epidemic in the new millennium will be to apply our insight and technology to the problem of eradicating AIDS stigma.

Author's Note: Preparation of this article was supported by an Independent Scientist Award from the National Institute of Mental Health (K02 MH01455).

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