Presentation

1. Introduction

In the early nineteen eighties, a new disease entity was first detected in the United States and soon thereafter in Europe. Because of its special features, this disease quickly became the center of attention of the world's health services, healthcare organizations and public opinion. In somewhat less than two decades since then, the retrovirus known as Human Immunodeficiency Virus-HIV 1 and HIV2-has gone from a mere biological finding to a development which is at the center of social interest and concern.

As is well known, HIV destroys the body's immune defenses over a relatively long asymptomatic course. Its effects become manifest later, through clinical presentations attributable to as many as 30 specific diseases, common infections or cancerous processes.

In October 1980, Dr. M.S. Gottlieb et al, of Los Angeles, first reported on five patients whose pneumonia was associated with a deficiency in CD4 lymphocytes. Subsequently, the Centers for Disease Control (CDC) in Atlanta alerted the world to a sudden and unusual increase in the incidence of Kaposi's sarcoma in young men living in New York and San Francisco. The uneasiness created by the report led to the careful monitoring of new alarming signs. These cases coincided with a decisive fact in the history of HIV infection-the infected patients from California and New York were homosexuals. Although HIV infections and tumors soon affected other heterosexual male and female populations, names like the gay plague, gay cancer, gay pneumonia or gay- related immunodeficiency (GRID) began to appear in the literature.

Epidemiological data soon revealed the extent of the disease. In 1982, these "abnormal" patients numbered 200 and began to be spread out beyond the initial disease enclaves and affected groups. Cases of HIV-infected heroin addicts, and the first instances of infected hemophiliacs, had already been found. Also, research by organizations such as the World Health Organization (WHO) confirmed the emergence of similar HIV infection throughout the world. This gave rise to the idea that a virus acting much like the hepatitis B virus might be behind the incipient plague.

By September 1982, the Centers for Disease Control had coined a more neutral term to define the set of clinical presentations related to the immune deficiency: AIDS or Acquired Immunodeficiency Syndrome, which was soon adopted the world over in its various translations.

Advances in defining the syndrome that characterizes the disease made it possible to single out groups at risk and to determine early public health measures. Nevertheless, by 1988, AIDS had become the leading cause of mortality among New York City's men and women 23 to 34 years of age.

In 1983, Luc Montagnier, of the Pasteur Institute in Paris, identified the human immunodeficiency virus (HIV), and some time thereafter Robert Gallo, of the National Cancer Institute at Bethesda, Maryland, also succeeded in isolating the virus. Unfortunately, over the next 10 years, the two institutions were mired in a dispute regarding the paternity of the discovery; the matter was finally settled by an agreement to share the copyright.With the identification of the virus, the acronym AIDS (SIDA in Spanish) became the official name of the disease syndrome caused by the HIV retrovirus.

Today, AIDS is considered a pandemia. According to WHO, it has spread to the entire planet following various routes. In developed countries, homosexual males and users of injected drugs have been particularly affected. Subsequently, an increase in the transmission of the disease to heterosexuals has been reported. Throughout the Caribbean and sub-Saharan Africa, the form of transmission is basically heterosexual. In Southeast Asia, the disease emerged even later-in the mid-1980s-but spread rapidly by heterosexual transmission and the use of injected drugs.

The short but intense history of AIDS has outpaced modern social perception of disease, carrying us back to dark times we thought had been gone forever. When victory over all infectious disease appeared to be at hand, AIDS opened up a new war front, right behind the lines of world's health system and global awareness. HIV brought on a new social crisis which extended beyond transmission of the disease and affected both carriers and non-carriers of the infection.

Along with scientific efforts to gain a better understanding of how HIV works-to at least reduce AIDS to the status of a chronic disease while waiting for a cure, and to develop a vaccine against the virus- it is necessary to encourage new thinking and a social debate, and thus awaken more minds and move them into action as we face the undeniable fact that AIDS has brought back problems that go beyond disease itself, affecting the social fabric of life, human relations, and ethical and political principles. Our avowed purpose is to extend the debate to the social problems exposed by the disease. The impact of HIV has reached beyond people who have been infected in one way or another, to the point of altering behavior and habits. Without actually being present as an infection, AIDS has invaded the factory, the school, the media...and many other spheres of human activity. It has affected men, women and children differently. It has moved into both poor and developed countries. In short, it has engendered all kinds of social responses, except indifference. The fight against AIDS must not merely target the virus, but must provide an opportunity for us to think and to defend ourselves against opportunistic social diseases clearly stimulated by the disease. This project intends to start out in that direction and with that objective, while encouraging related activities.

The AMAS Project is to be an element that contributes to the research process at the same time being an information and discussion element regarding HIV, which in turn can stimulate other initiatives.

2. Description of project

The AMAS Project (Aproximación Multidisciplinar para el Abordaje del SIDA - A Multidisciplinary Approach to AIDS) encompasses a number of research strategies aimed at establishing a core of shared and shareable thought on the personal and social repercussions of AIDS.

AIDS is a galaxy of phenomena that make up the disease itself. This project is designed to find an approach to the overall problem, shying away from a linear approach and accepting complexity and disarray as inherent to the disease. Obviously, the project needs to be multidisciplinary, since complexity is not something that can be addressed from any single discipline. Different approaches will provide different perceptions, and the organization of these differences will reveal new, unexpected changes and variations of the disease.

Our ultimate intent is to gain a better understanding of what we have called "the AIDS galaxy," by generating shared and shareable knowledge that can provide new ways and tools for approaching the disease and at the same time stimulating further research.

3. Objectives

In accordance with these criteria, the objectives of the AMAS Project are summarized in the following four items:

1. To debate AIDS problems with groups and individuals affected by the disease.
2. To develop approaches to the social problems posed by AIDS, using a phased consensus at different stages.
3. To draw a final document on AIDS, its social implications, and the future strategies needed to fight the disease.
4. To issue a public report on the results of the work done, to increase the AIDS knowledge base and tools and expand social awareness.

4. Research design

In order to acheive the objectives, a methodology contemplating different The basic tool in the development of the AMAS Project is the work to be carried out among individuals and groups, depending on their relative positions vis-à-vis AIDS, so that they may be able, individually and collectively, to contribute their points of view, knowledge and experience.

4.1. Working groups

The AMAS Project contemplates the formation of three so-called Experienced Groups, or EGs, made up of 15 members each. To this end, we will call on people in any of the following categories:

• HIV carriers;
• family members living directly with HIV carriers;
• healthcare providers/social services personnel working with HIV carriers;
• people connected with or support groups or organizations involved in AIDS care or prevention.

The AMAS Project is based on the premise that HIV and AIDS are far from being solely a healthcare problem. At this time, they are also a problem with social, psychological, educational, ethical and, obviously, healthcare ramifications. AIDS does not involve only those infected, those living with them, and those healthcare professionals who treat them. For this reason, this Project contemplates the development of a new strategy that will include what we call Opinion Leaders (OLs). These opinion leaders will bring to the project an outsider's vision-the vision of society--of what AIDS is and the repercussions it triggers.

Opinion leaders

Opinion Leaders for the AMAS Project, to be selected by our Research Team, will be individuals who agree to participate in the Project and who will share with us their points of view, in writing, for submission to the other OLs and to the Experienced Groups.

The Project conceives of the OLs as international figures, with links to the cultural world in the widest sense of the term. They will be expert professionals from any discipline, and will have in common widely recognized intellectual and human qualities, so that their voices will be listened to by a significant sector of the population, both from the quanitative and the qualitative standpoints. Obviously, these OLs do not necessarily have to be, nor are expected to be, related to AIDS.

The AMAS Project calls for five Opinion Leaders. They will be integrated into the Project by the following process: the Research Team will select a potential candidate, contact him/her, and submit for their consideration the project as a whole, specifying the nature and conditions of their participation.

Once their participation has been agreed upon, each OL will receive all the information relating to the project and the first invitation to provide us with his/her contribution. The Research Team will forward to each OL a working folder, which will include a selection of relevant papers on HVI and AIDS, as well as up-to-date reference material. The folders will also include a number of questions raised by the Research Team. All this material is intended to stimulate and help each OL in thinking about what he/she may want to say. Each OL will be asked to write a paper of about 40 pages, and to provide such data and opinions as he/she may see fit to share with us.

The first papers from Opinion Leaders will be prepared without any prior contacts among them. Actually, no OL needs to know who the other selected OLs are. At the end of this phase of the study, the Research Team will have received five papers independently prepared by the five OLs. All these papers are to be integrated into a single document, which will become the working basis for debates to be carried out by the Experienced Groups-EGs-in respective symposia.

Once the work of the EGs is completed, each Opinion Leadeer will receive a summary report prepared on the basis of the five initial and separate OL papers, plus the contributions of the EGs. In this second stage of the project, OLs will review their contributions, amplify or modify their points of view, and discuss such questions as they may wish to bring up-all of this to be done in writing and forwarded to the Research Team. The team will summarize all the contributions and will in turn pass them on to the EGs at another seminar to be held for this purpose.

A second debate, at EG seminars, will allow us to add new contributions to the existing document. The Research Team will then write a Final Document to be presented and debated at a Symposium that will be held in Barcelona and will include the five Opinion Leaders, members of the Experienced Groups, and the Research Team, as well as a group of outside experts who have not been parties to the research process.

Following the Symposium, a Final Report will be drawn up. It will include a description of the AMAS Project, an explanation of the methodology and process used, and the presentation of results.

Throughout the entire research process, an Internet Page, covering the AMAS Project and general information on AIDS, will be accessible to the participants, and discussion groups on HIV/AIDS subjects will be proposed. Their deliberations will also be included among the items supplied to further the thinking of OLs and EGs.

As we have seen, the AMAS Project is intended to relate the individual reflections of intellectual members of the various disciplines with the work and conclusions of groups directly involved in HIV/AIDS problems. The Research Team will act as a connecting link between these two groups, and its function will be to plan, coordinate and summarize all contributions.

In this manner, we believe we can achieve the objectives we set for ourselves; i.e., to debate, develop and publicize consensual approaches to HIV/AIDS problems that will allow setting forth all their implications and the strategies necessary to face them, so as to gain a better understanding of AIDS and widen the extent of social awareness.

5. AMAS Team

Direcció

Sra. Montserrat Teixidor

Assessor de Direcció

Sr. Esteban Pont

Equip d'Investigació

Sr. Esteban Pont (Director)

Sra. Montserrat Teixidor

Sr. Ferran Ferrer

Sr. José Luis Bimbela

Líders d'Opinió

Sr. Manuel Carballo

Sr. José María Mendiluce

Sra. Rosette Poletti

Sr. Ignacio Ramonet

Grup Experiencial

Sr. Marco Angiolini

Sr. Javier Barbero

Sra. Montserrat Bes

Sr. Rob Camp

Sra. Emilia Cardona

Sra. Judith Cobeña

Sra. María Luisa García

Sra. Pilar Garriga

Sra. Isabel Lazaro

Sra. Montserrat Llinàs

Sr. Pere Llobera

Sra. Rosa María Mansilla

Sr. Esteban Martínez

Sr. Juanjo Mascort

Sra. Montserrat Pineda

Sr. Guillermo Valverde

Sra. María José Vázquez

Sr. Josep María Yagüe

Web del Projecte AMAS

Sra. Àngels Canal

Sr. Sergi Puyó-Paretas