Print this page    •   Back to Web version of article


Gordon Nary

August 1998

In his diaries, Jean Cocteau wrote that "Maturity is knowing how far is too far." If Cocteau was alive today and had accepted a commission to cover the 12th World AIDS Conference for Paris Match, the French auteur/author/journalist/artist/designer/poet might well have expanded his observations on how far too far is when applied to the Geneva Principle, which undergirded the conference. The Geneva Principle, according to Conference Chair Bernard Hirschel, states that "all the organizations that represent one of the constituencies that make up the AIDS community should have an equal say in determining the structure and contents of the programme." The Geneva Principle was a landmark victory for AIDS activists who not only won their place at the table, but were now empowered to help plan the menu.

The Geneva Principle is in some ways a metaphor for the transformation of the physician-patient relationship from a theocracy into a partnership in which treatment decisions are often shared and respect the patient's autonomy. More than any other disease, AIDS has helped restore the patient rather than medical technology as the proper focus of medicine. Autonomy demands empowerment. It is therefore appropriate that such empowerment manifest itself in participation of the drug approval process, disease prevention, healthcare resource allocation, and in the treatment of one's disease. A respect of patients' autonomy also mandates a primary role for the patient community in the access to timely clinical and scientific data that could impact their survival and quality of life.

It might therefore seem appropriate to some that such access extend to the organization of medical conferences in which data affecting survival and quality of life are presented. But such logic is fuzzy at best. A patient's autonomy does not have any relationship to the organization and conduct of the presentation and exchange of scientific and clinical data between physicians. Activists should not consider their victory in Geneva as a moral justification to demand similar participation on other conferences agendas which are designed exclusively for scientists and clinicians.

This series of international AIDS conferences is unique in its interdisciplinary focus and is one of the few that welcomes patients and their advocates to the presentation of scientific and clinical data. But the enlightened European humanism that has contributed to such a unique forum requires a delicate balance between professional and non-professional interests. However, the decision on how conference committees are organized and the roles of the committee members is the sole responsibility of the conference organizer and secretariat. They have the right and responsibility to address the needs of their constituents and remain independent of interference. As the eminent philosopher Leslie Gore once stated, "It's my party and I'll cry if I want to."

In this Cocteau fantasy with his imaginary coverage of the Geneva conference, the author of Les Enfants Terribles might have characterized the conference as a succès d'estime, a term used to describe a critical success but one which is not appreciated by the general public. Although the 12th World AIDS Conference was a critical success by activist standards, many physicians were visibly disturbed by the insinuation of AIDS activists into the planning of the scientific and clinical sessions. Some have decided not to attend the Durban AIDS Conference in the year 2000 should activists play a similar role in the scientific and clinical tracks.

Has the activist community pushed the envelope too far, or just far enough? How far is too far? Cocteau, more than anyone else in this century, transformed envelope pushing into an art form. But the art of advocacy, like any other art form, requires a harmonious balance between its complementary and opposing elements.

This article was provided by International Association of Physicians in AIDS Care. It is a part of the publication Journal of the International Association of Physicians in AIDS Care. You can find this article online by typing this address into your Web browser:

General Disclaimer: is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, consult your health care provider.