AEGiS-IFRC: Breaking down the barriers of stigma

Important note: Information in this article was accurate in 2003. The state of the art may have changed since the publication date.

Breaking down the barriers of stigma

International Federation of Red Cross and Red Cresent Societies - 30 November 2003
Juan Manuel Suarez del Toro*

In 1984, France and the United States officially announced the discovery of the virus that causes AIDS. That discovery marked the onset of a pandemic whose scope and impact is as yet unknown. Twenty years are, of course, a mere grain of sand in time, but in epidemiological terms, AIDS has so far caused the death of more than 25 million people worldwide and 42 million are presently living with HIV. It is estimated that during this decade, more people will die of AIDS than have been killed in armed conflicts in the past fifty years.

More than 80 per cent of children around the world living with HIV/AIDS are in Africa, where the disease is becoming a plague. Nearly 29 million people have HIV/AIDS. Its direct effects are compounded by the factors that make Africa the poorest and most vulnerable of all continents: a per capita income that is 25 times lower than Spain's, rapidly spreading impoverishment, desertification, famine, armed conflict, poor access, if any, to health care and education and the growing incidence of tuberculosis, malaria and other poverty-related diseases. All these factors combine to aggravate the disease's impact and hamstring any global action to check the pandemic.

Have we, however, looked beyond the obvious impact of these socio-economic factors to recognise stigma and discrimination as the ever-present companions of the disease? That both are a cause and a consequence of HIV/AIDS? While invisible to most people, stigma and discrimination are there for the victims, placing an insurmountable barrier in the path of prevention and legislation, making it impossible to consider the quality of life û from the ethical and moral as well as from the material points of view - of those who are ill. These are barriers in front of barriers that block efforts to rewrite the tragedy.

From the strictly medical and scientific point of view, the human and economic resources invested in AIDS research (never in the history of medicine has a similar effort been made in such a short space of time) have obviously wrought a major improvement in the lives of people with HIV/AIDS. The disease no longer spells death in the short term. In certain circumstances, it has become a chronic disease. But not all AIDS sufferers have equal access to medical progress û people in poor countries have little or no access to medicines û and some level of success on the medical front has not been matched by success on the social front. Indeed, as a society we have failed to create the objective and subjective conditions that would allow people affected by the disease to lead decent lives.

In fact, HIV has accentuated differences and intensified inequality. It has widened the gap between north and south. Indeed, our success so far may have been a hollow one.

Speaking in Durban in 2001, Peter Piot (Executive Director of UNAIDS) said: "HIV stigma comes from the powerful combination of shame and fear. HIV is transmitted through sex and so is surrounded by taboo and moral judgement... . Giving in to HIV stigma by blaming 'others' for spreading HIV creates the ideal conditions for HIV to spread.... . Shame must be replaced with solidarity."

Official discourse, beliefs (our own and those we receive), the power of the media, cultural and social taboos, all form a solid barrier that is difficult to dismantle because there is much that is irrational in our world. AIDS conjures up taboos, fears and fantasies that give the disease a different, non-rational dimension and fosters prejudice, stigma and discrimination. Thus, at the dawn of the 21st century, many governments refuse to acknowledge the existence of HIV/AIDS, creating the ideal culture for its propagation, while many others bar bearers of the disease from entering their countries.

In this increasingly fraught context, it is people with HIV/AIDS, taking on the role of self-empowered activists, who have mobilized to reclaim the rights society as a whole has denied them out of prejudice. These are basic, inalienable human rights. As the late Dr. Jonathan Mann said - with the universal, humanistic and holistic vision that was characteristic of him û that only if human rights are strictly applied will it be possible to take effective preventive action.

UNAIDS itself has listed effective progress on human rights among its global prevention guidelines. Epidemiologists have noted that the epidemic is worse in communities and groups whose human rights situation is more vulnerable.

No one can remain indifferent to the urgent need for a real and integrated approach to the problem of HIV/AIDS-related stigma and discrimination. In the face of the suffering of millions of people, of the present enormity of the AIDS pandemic and despite the few hints of improvement we have seen, an adequate global response must be found.

To that end, and for the purpose of heightening public awareness of the serious harm that stigma and discrimination causes to the lives of people living with HIV/AIDS, the International Federation of Red Cross and Red Crescent Societies launched a global campaign last year entitled, "The truth about AIDS. Pass it on ...".

Based on one of the Red Cross Red Crescent Movement's founding principles û Impartiality - which calls for respect for human dignity without distinction as to nationality, race, class or political belief - the global campaign continues to work to prevent, lessen and eliminate HIV/AIDS-related stigma and discrimination, in all forms, everywhere.

The issue is also on the agenda of the International Red Cross and Red Crescent Conference that will start on December 2. At the conference, all national Red Cross and Red Crescent Societies and all the States signed up to the Geneva Conventions, will discuss the need to review the legal framework that allows stigma and discrimination to flourish. In addition, WHO will today (World AIDS Day) announce its plans for making treatment available to three million people by 2005.

The victims of HIV/AIDS continue to suffer a "social death", their situation unfortunately aggravated by hypocrisy and silence. There is no time to lose, because stigma kills. The health of society as a whole is at stake.

* Juan Manuel Suarez del Toro Rivero is President of the International Federation of Red Cross and Red Crescent Societies

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