amfAR, The Foundation for AIDS Research

Stigma and the “Spoiled Identity”

Overcoming HIV Labels and Stereotypes

Jeffrey Laurence, M.D.

September 16, 2008Dr. Peter Piot, executive director of UNAIDS, recently noted that stigma is a major barrier to accessing HIV prevention, care, and treatment services. Yet efforts at reducing stigma have been relegated, he charged, “to the bottom of AIDS program priorities.” amfAR grantees Dr. Robert Remien of Columbia University and Dr. Jennifer Sayles of UCLA, writing in an August issue of the medical journal AIDS, have studied this topic and offer potential solutions.

Stigma reduces an individual “from a whole…person to a tainted, discounted one,” wrote Drs. Remien, Sayles, and colleagues. Society stigmatizes on the basis of what it has judged to be deviant, and the result is a “spoiled identity.” The study’s authors pointed out that stigma is a difficult subject to investigate because it varies according to culture and national setting, can be manifest on both personal and societal levels, and functions at the intersection of culture, power, and difference. It may even appear central to a group’s prevailing social order.

The authors approached stigma by conducting a comprehensive search of the pertinent scientific literature and by convening an international think tank—a multidisciplinary group of HIV/AIDS social scientists, clinical researchers, and international health agency officials. This is a method that has been used by amfAR as well to tackle difficult issues requiring many different types of expertise.

The researchers began by surveying how people living with HIV/AIDS (PLWHA) are labeled and stereotyped based upon incorrect beliefs and attitudes. This labeling has led to PLWHAs being systematically disadvantaged in terms of income, education, housing, medical treatment, and health. Stigma has also limited the participation of PLWHAs in HIV testing, and has discouraged them from disclosing their HIV serostatus to a sexual partner, seeking lifesaving HIV medications, or adhering to such treatments.

The researchers also drew upon the work of anthropologists who sought to define the conditions in particular societies that contribute to stereotyping. And they uncovered some critical features, including the idea that some PLWHAs may suffer a “self-imposed discrimination” that may incline them, based on past experiences that may no longer be relevant, to fear rejection and resignation and act as if discrimination had already occurred.

This review of the current state of knowledge about stigma highlighted the need to develop indicators or scales to track its burden over time and to compare stigma across different regions. It also included identification of stigma reduction strategies that have been successful in intrapersonal, interpersonal, and institutional situations. Finally, Dr. Remien, Dr. Sayles, and associates sounded a call to reform laws and policies that enable stigma and discrimination against men who have sex with men, injecting drug users, sex workers, and migrants.

Dr. Laurence is amfAR’s senior scientific consultant.