From: rastern@sol.racsa.co.cr Date: Fri, 2 Jan 1998 15:14:02 -0600 (CST) Subject: AIDS IN LATIN AMERICA, SOME COMMENTS Impressions from the Fifth Panamerican Conference on AIDS in Lima Peru. by Guillermo Murillo From the 3rd to the 8th of December, in Lima Peru, I had the opportunity to share experiences with different individuals from groups and organizations working in the field of AIDS on a Latin American level, but mostly I was able to share not with those on the governmental or medical level, but with those who work on the frontlines in the barrios, in the streets, and in prisons. This AIDS conference enabled those of us who live with AIDS in Latin America, to begin to be concious of the importance of assuming a proactive role against this illness and to leave aside the role of "helpless victim" in order to begin to denounce the human rights violations which occur against us. We need to stop asking for "favors" and start demanding our rights by carrying out concrete actions to seek quality medical attention including access to retroviral medications. The situation of People Living with AIDS is very similar throughout Latin America, in some countries it is worse than in others, but nowhere is the situation good. Half of the population of Latin America lacks access to either private or public health services and when these people become ill, their families have to try to assume the burden of care, placing them in a precarious position economically. Even in those cases where there is government or private insurance, abuses are widespread and it is common for people living with AIDS to be refused the care they are entitled to. In the area of jobs, throughout Latin America, when an employee is discovered to be HIV+, his or her employers look for any pretext for dismissal and the victims of this discrimination are too intimidated and too frightened to seek justice. It was apparent as we exchanged information that in the majority of Latin countries, that the families of people living with AIDS continue to feel the need to hide the illness at all costs, which only worsens the suffering, and discrimination which HIV+ people have to endure. The family name has to be protected at all costs and AIDS is seen as a black mark. During the conference it was easy to note the absence of government policies designed to confront the epidemic and its impact, as if the governments are waiting for problems to magically disappear. In Latin America government officials are themselves, full of the same prejudices as the populations they govern and are unable to lead programs to confront problems which people living with AIDS face. There was a notable lack of representation from Central American countries of People living with AIDS, reflecting that groups in this region are poorly organized, but also demonstrating that governmental as well as non-governmental organizations failed to provide possibilities for persons affected by the disease to attend. Future conferences should take into account the need for representation of Persons Living with AIDS from the Central American region. We here in Costa Rica are interested in hearing about concrete cases of discrimination throughout the Latin American region in order to continue the process of centralization of information about human rights violations so that we can call attention on an international level to these issues. Please communicate with us about discrimination in medical settings, in the workplace, and in educational institutions. Remember that the denial of the retroviral medication to patients is a human rights violation and should be denounced. Guillermo Murillo Costa Rican Association of People Living with AIDS Apartado 366-2200 Coronado, Costa Rica Tel. 506-234-2411 506-433-8522 Fax 506-223-3964 e-mail. rastern@sol.racsa.co.cr Commentary on Guillermo Murillo´s Observations by Richard Stern January 1st, 1998 I was not in Lima, but I agree with much of what Guillermo has stated. Now that the Lima conference is over, we are bombarded with information about the next big AIDS conference in Geneva, in June of 1998, but we hear nothing about what UNAIDS or governments are planning to do now about the AIDS situation in Latin America now, this month, this week. I think these conferences, while certainly important as a forum for exchanging information and experiences, also provide a convenient excuse for elitist leaders to proclaim the "progress" that is being made, and to ignore the reality of people living with AIDS in this region. In Costa Rica, we organized and carried out a program in 1997, which resulted in AIDS patients here winning a Supreme Court challenge that has enabled them to receive the medications that they need. At the same time we have called attention to specific human rights violations that have occurred here, and there is a very well organized group of HIV+ person who are in process of organizing a series of activities. UNAIDS regional representative Dr. Angel Fulladolsa, who is based in Guatemala, was here in Costa Rica last July soliciting that proposals be developed for 1998 in relation to AIDS in the Central American region. Drawing on our Costa Rican experience Guillermo Murillo and I sent a detailed proposal to Dr. Fullodolsa in early October in which we described how the Costa Rican program could be expanded to other Central American countries using methodology that was successful here. The program was designed to try to support the empowerment process in local NGO´s and seek and support the development of programs in which People Living with AIDS would begin to assume leadership roles. We have never received any response from Dr. Fulladolsa. I called him late in November, and he said that he sent a letter which we have never received. To me there was no indication from the conversation that he was familiar with our proposal, and we have had no further communication from his office. I don´t say that our proposal is the best that exists or should be accepted. I do say that I would like to know a) what proposals are being accepted and what are the criteria for acceptance b) how much money is available though UNAIDS, OPS, etc and where is it going in the Central American region, and who is making the decisions about this. c) what attempt is being made to include grassroots successful groups such as ours in planning on a regional basis, and also what attempt is being made to insure the representation of people living with AIDS in the planning process. The AIDS epidemic in Latin America, bears little resemblance to the epidemic as it has evolved in European and North American countries other than that it is the same virus. Social and Cultural factors in this region have caused the primary impact of the disease here to be the psychological and social destruction of the individual which precedes and makes inevitable the final physical destruction, and those at the governmental and international level of policy making continue to act as if they are unaware of this. Richard Stern Health Coordinator Asoc. Triangulo Rosa Apartado 366-2200 Coronado, Costa Rica Tel. 506-234-2411 Fax: 506-223-3964 e-mail. rastern@sol.racsa.co.cr, atrirosa@sol.racsa.co.cr