1: Introduction

It goes without saying that HIV/AIDS is as much about social phenomena as it is about biological and medical concerns. Across the world, the global pandemic of HIV/AIDS has shown itself capable of triggering responses of compassion, solidarity and support, bringing out the best in people, their families and communities. But the disease is also associated with stigma, ostracism, repression and discrimination, as individuals affected (or believed to be affected) by HIV have been rejected by their families, their loved ones and their communities. This rejection holds as true in the rich countries of the north as it does in the poorer and developing countries of the south.

All over the world, ignorance, lack of knowledge, fear and denial have engendered serious and often tragic consequences, denying people living with HIV/AIDS access to treatments, services and support, as well as making it hard for prevention work to take place. The epidemic of fear, stigmatization and discrimination first described by Jonathan Mann (1987) has undermined the ability of individuals, families and societies to protect themselves and provide support and reassurance to those infected (Merson, 1993).

The London Declaration on AIDS Prevention following the World Summit of Ministers of Health on Programmes for HIV Prevention in January 1988 was one of the first international statements to recognize that:

“Discrimination against, and stigmatization of, HIV-infected people and people with AIDS and population groups undermine public health and must be avoided.” (para. 6)

In 1988, Resolution WHA 41.24 of the 41st World Health Assembly subsequently urged Member States to foster a spirit of understanding and compassion for HIV-infected people and those suffering with AIDS. In addition, the resolution recommended Member States to protect the human rights and dignity of affected individuals and population groups so as to discourage discrimination and stigmatization in the provision of services, employment and travel.

In 1989, the United Nations Centre for Human Rights organized the first international consultation on HIV/AIDS and human rights. This forum reaffirmed the public health rationale for the prevention of HIV/AIDS-related discrimination and the promotion and protection of human rights in the context of HIV/AIDS - a view reaffirmed in United Nations General Assembly resolutions in 1990 and 1991.

In late 1996, the second international consultation on HIV/AIDS and human rights was convened jointly by UNAIDS and the Office of the High Commissioner for Human Rights. Twelve international guidelines on HIV/AIDS and human rights were drafted at this meeting, the majority of which emphasized, once again, the need to avoid HIV/AIDS-related discrimination and to ensure the promotion and protection of the human rights of people living with, and affected by, HIV/AIDS.

International human rights law seeks to guarantee freedom from discrimination on many grounds including sex, race, language, religion, political opinion, birth or other status. In Resolutions 1995/44 and 1996/43, the UN Commission on Human Rights confirmed that the phrase “other status” is to be interpreted as incorporating health status, including HIV/AIDS. This means that discrimination against people living with HIV/AIDS - or those perceived to be at higher risk of infection - is legally prohibited.

Resolution 49/1999 of the UN Commission on Human Rights reaffirms that:

“Discrimination on the basis of HIV or AIDS status, actual or presumed, is prohibited by existing international human rights standards, and that the term, “or other status” in non-discrimination provisions in international human rights texts should be interpreted to cover health status, including HIV/AIDS.”

Among its many provisions, the resolution encourages states, UN agencies, non-governmental organizations, UN treaty bodies and inter-governmental organizations to combat HIV/AIDS-related discrimination, prejudice and stigma and to monitor and enforce HIV/AIDS-related human rights.

Visibility and openness about HIV/AIDS are prerequisites for the successful mobilization of government and community resources to respond to the epidemic. Because they fear stigma and discrimination, people living with HIV/AIDS may be deterred from being open about their serostatus. This enables governments and others to deny that there is a problem. Consultations and meetings have already taken place designed specifically to review experiences and progress in combating the kinds of stigmatization and discrimination that are serious obstacles to prevention and care. Objectives also include sharing best practices with respect to existing codes and legislative frameworks, and to further contribute to international efforts ensuring that HIV/AIDS-related discrimination is reduced and its effects ameliorated (see, for example, HRI, 1996).

Given this intensity of activity, it may be surprising to learn that relatively little systematic research has taken place on the forms that HIV/AIDS-related stigmatization and discrimination take, the different contexts in which they occur and their varying determinants. Indeed, a review of the abstracts from recent regional and international conferences on HIV/AIDS shows that the majority of papers dealing with such concerns focus either on individual cases or experiences, or on the role of non-governmental organizations in exerting pressure on governments and national authorities to act to prevent further discrimination.