Date: Mon, 28 Feb 94 17:42:02 EST From: Daniel Soto Mayorga Subject: Cuba: Goodbye Rau'l GOODBYE, RAUL Karen Lee Wald Havana One of the pioneers in AIDS education/prevention in Cuba, Raul Llanos Lima, died in Havana February 20 of cardiac arrest. He was 39 years old. He had tested positive for HIV in 1986 and had lived and worked in Cuba's first AIDS Sanatorium in Santiago de las Vegas since November of that year. In 1989 Raul Llanos and his companero of many years, Dr. Juan Carlos de la Concepcion, initiated a major break-through in AIDS education in Cuba by speaking publicly, and with their faces to the camera, to a variety of media. They also started an AIDS Information Drop-in Center at the National Center for Health Education, spoke on radio and to print media reporters, and to growing numbers of students and young people in recreation centers, college dorms and public gatherings. Until that time, people with AIDS and HIV in Cuba, as in many other countries, were almost entirely invisible -- out of sight, out of mind. While the government's health ministry provided a wide range of medical and personal care to people affected by the virus, the program to educate the population and thereby prevent the spread of the disease was very weak. In a country where almost nobody came in contact with people with AIDS, nobody felt at risk -- a key element in getting people to change their AIDS-risky sexual behaviors. The fact that care for PWAs and HIV carriers was provided in a special sanatorium outside of Havana was a double-edged sword. While slowing the spread of AIDS by limiting contact between HIV-positive individuals and the general population until the PWAs were taught how to protect themselves and others, this policy of semi-isolation also fostered the delusion of being "safe" among those who were not infected. After all, people would think, if everyone who has AIDS is in a sanatorium, why bother to use condoms? It was to combat this dangerous self-deception that Raul and Juan Carlos spoke out so strongly and frequently -- letting people know that normal, everyday people like themselves could get AIDS. Eventually a number of other HIV-positive patients at the Sanatorium joined Raul and Juan Carlos in forming the Grupo Prevencion SIDA (AIDS Prevention Group, known as GPSIDA) to carry out the work of going into the community and spreading the word about AIDS--how you get it, how to prevent it, what to do when you are infected. As the Public Health Ministry began opening up sanatoriums in other provinces, the group's message started spreading throughout the country. Their ability to offer constructive criticism, based on their personal experience, also contributed to the continual development of the program. Working closely with Sanatorium Director Dr. Jorge Perez, GPSIDA provided many of the ideas and feedback needed to bring about today's system of combined sanatorial and ambulatory care, in which people with HIV have the option of being treated in santoriums in their home provinces or as outpatients treated primarily by their local doctors. Raul Llanos and Juan Carlos de La Concepcion -- they were a team even more than a couple --also spoke to increasing numbers of foreign visitors --doctors, researchers, AIDS educators, reporters, and those who simply wanted to know what Cuba's AIDS policy was. Often foreign visitors had heard horror stories about "concentration camps" and imprisonment of people with AIDS in Cuba. The example set by Raul Llanos and Juan Carlos de la Concepcion, of speaking openly and honestly about the disease and Cuba's program to contain it, was followed by others, and helped refute the many myths that had grown up around the program, even as they pushed to improve it. An extensive (and intensive) speaking tour by Raul Llanos and Dr. de la Concepcion of US AIDS centers, hospitals, and community groups in late 1992-early 1993 was credited by AIDS activists from New York to California as having provided a unique and invaluable exchange of information that will impact on many treatment programs. While highly successful in this regard, the exhausting trip took a toll on Raul Llanos' health, from which he never fully recovered. Raul Llanos was a trained accountant and a self-taught computer specialist, who prior to his illness had worked in the Electric Company and the Sports and Recreation Institute (INDER). He brought his expertise to play at the Sanatorium, developing a computerized accounting and medical data retrieval system that improved both staff efficiency and patient care. At his funeral -- attended by not only by family, friends, co-workers and many PWAs, but also by a variety of medical professionals and representatives of the Ministry of Foreign Relations -- Dr. Jorge Perez spoke the parting words at his graveside. Pointing out that he knew Raul both as a patient and a co-worker, Dr. Perez touched on Raul's distinguished career in his previous jobs prior to testing positive for HIV. "With us in the Sanatorium, he worked in the accounting department. He Organized the inventories, help set up computerized systems to keep track of medical supplies, and in fact he headed the Santorium's accounting department for a period of time." "In all this," he went on, "Raul Llanos was known for the serious quality of his work, for his dedication. That was Raul, the outstanding worker. But at the same time, there was Raul, the HIV patient of the Sanatorium since 1986: sharp, observant, revolutionary, who fought to see that the truth be known about the Sanatorium inside and outside of Cuba, defending the health care policies of the Revolution and the Revolution itself. He spoke often to the foreign press and visiting groups, and he always spoke to them with sincerity and firmness of principles." "Outside of Cuba," he continued, "in the United States --in San Francisco, New York, Philadelphia, he spoke and told the truth about our system, defending the principles and the fairness of the Cuban Revolution's health policies." Even on his sickbed, Dr. Perez noted, when he was already deathly ill, Raul Llanos remained concerned about the work of his department in the Sanatorium, ofering solutions to problems that arose in his absence. "We have come here today," he concluded, "together with his friends and family, to bid our last farewell to a companero dearly beloved by everyone. We have suffered a real loss. We join with his family, friends, patients and workers of the Sanatorium in saying: "We will always remember you, Raul. Rest in Peace." In addition to his long-time companion Juan Carlos, Raul leaves his parents, Ena Lima and Jose Llanos, 3 brothers and a sister, and a close and caring extended family of aunts, uncles and cousins, as well as the larger family of people who knew and loved him through his work, his life in the Santorium, and his efforts to engage people throughout the world in the struggle against AIDS. ***************************************************************************** * Daniel Soto Mayorga * Pledge of allegiance: "...with liberty and * DSOTO@INDIANA.EDU * justice for all" Why is "all" so hard to * DSOTO@UCS.INDINA.EDU * understand ? * DANIELTICO@AOL.COM * *****************************************************************************