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Havana from Space
Cuba and AIDS
Cuba's AIDS patient #1 diesBy Karen Lee Wald, Havana 4 October, 1995 Reynaldo Morales wasn't the first person in Cuba to test positive for HIV. Nor was he the first to die of AIDS. But through a quirk of fate, and the universal propensity of hospitals to give all patients case numbers, when Reynaldo Morales returned from military service in Angola in early 1986 he became Patient #1 at Cuba's newly created AIDS sanitorium. Morales was married, with a 9-year-old son, and was working as a driver for the daily newspaper Granma, when he answered the call for internationalist volunteers to serve in Angola in 1984. When he returned two years later, AIDS had just become a reality for Cuba, with one person dead, another HIV positive, and the beginnings of contact tracing underway. The Health Ministry proposed testing all citizens returning from extended periods abroad, and the military were among the first to be tested. It was to be the first of many "firsts" for Reynaldo. On February 10, 1986 Reynaldo Morales was the first of the returning volunteers to be admitted to the Naval Hospital. On April 30, he was part of the first group of 23 patients who opened the new AIDS sanitorium in Santiago de las Vegas. His patient ID: number one. In 1989, Reynaldo Morales was among the first group of patients to begin working within the sanitorium. From chauffeur he graduated to mechanic, carpenter and electrician. Later that year, he and his wife Maria Julia (who became infected shortly after his return, before he knew he was carrying the deadly virus) were the first patients at the AIDS facility to be offered the option of returning to their home and jobs as outpatients. A few months later, they were the first of many to turn this option down. Life had become too precarious outside the sanitorium, the medical and psychological benefits of Cuban-style hospice care too great. The sanitorium -- a sizeable community of attractive, modern one-family homes and duplexes set among lush tropical gardens on an old rural estate outside Santiago de las Vegas, a small town on the outskirts of Havana -- had become home to Reynaldo and his family. Here, he was able to put his many mechanical skills to use, fixing everything from cars to electric irons. Here, his wife --like Reynaldo, a 20-year veteran of the Granma newspaper, where she had been an office worker -- became the first president of the neighborhood council set up in the sanitorium to duplicate the local CDRs and Popular Councils that are the backbone of Cuba's participatory democracy. Here they had friends, felt useful, kept busy. Reynaldo was a wise-guy, jokester, a good friend, someone who was always ready to lend a helping hand, to fix what was broken. Maria Julia was the serious one in the family, liked and admired by patients and neighbors as a leader, a mediator, a trusted spokesperson. To some people, the AIDS sanitorium was viewed as a prison. Not to Reynaldo and Maria Julia. Here, they lived a bucolic life Monday through Friday, going home on weekends to meet up with their teenage son, who would arrive a few hours after they did from the boarding school where he was training in judo while finishing high school. (His scholarship to the sports school was a lifelong dream granted immediately by the Ministry of Education when his parents fell ill.) Although not without its problems, difficulties in adaptation, and certain loss of privacy and personal liberty, sanitorium life was nevertheless in many ways ideal for Reynaldo and Maria Julia. Until Reynaldo became sick. On August 13, 1995, as the country was celebrating the birthday of the man who initiated the Cuban Revolution, Reynaldo Morales succumbed to the various afflictions that had been wearing his body down for the past year. He was 42 years old. Staff members as well as PWAs from the 300-patient sanitorium cried openly at the old funeral home in Santiago de las Vegas, sitting in wooden rocking chairs along walls lined with floral wreaths. Reynaldo was part of the first group of patients to enter the sanitorium in April of 1986; most of those who came after got to know him through his work or his escapades. His life touched all of theirs. But more than this, Reynaldo's life since 1986 is also an allegory of the progression of AIDS care in Cuba. DIDN'T WANT OUTI first met Reynaldo and Maria Julia in December 1989, when the new administration began talking about offering asymptomatic HIV carriers living in the sanitorium the option of outpatient care. I commented to two close friends who were also patients at the sanitorium: "You know, given all the benefits you've told me about, it just occurred to me that some patients aren't going to want to leave. Is that true?" When they agreed that this was the case, I asked them to introduce me to some people they thought might say no. They took me down a winding, tree-shaded lane to the woodframe home of Reynaldo and Maria Julia. The yard was dotted with orchids and a talking parrot. A small dog yapped at us as we entered the gate. In the house, Maria Julia wiped her wet hands on her apron and brushed back her straight blond hair. Reynaldo, young, good-looking, with light brown skin, dark curly hair, and sparkling eyes that glinted of mischief, was sitting in a rocking chair when we approached. I told them I was interested in the fact that Cuban health officials had begun talking about having patients who had already been through the AIDS education, medical and psychological evaluation programs return to their former lives. "If you were given this possibility, what would you do?" "Well, since I was the first one [in here]," Reynaldo responded, "they suggested that to me." He paused. "And I said no." Maria Julia explained that for her it was a psychological problem -- she didn't want to go back until she was well. "I don't want to live outside with AIDS. When I go back out on the street I want to be healthy," she told me. "We have our jobs waiting for us, and we're getting our complete salary as though we were still working there, and my friends from my department have all shown a lot of solidarity towards me," she acknowledged. "But really, this thing affects me psychologically, and I don't think I could work..." Reynaldo felt he could be more active, and more useful, inside the sanitorium than outside. "I have a carpentry shop with two power saws, and a small electrical repair shop," he pointed out. "In the beginning I didn't have many customers, but now I have more than I can handle..." Asked about the possibility of returning home, he shook his head. "I feel good here, I'm relaxed. I've noticed that I get bored a lot when I go home on pass, there's nothing to do but go to the bread store or do some little chores around the house. I don't like being inactive. Here I'm constantly on the move." His reasons for wanting to stay in the sanitorium were varied. Having gone through the initial shock of adapting to life in a sanitorium, Morales wsn't quite sure he wanted to deal with the additional shocks of being a PWA out on the street. "I'm not afraid to face anybody," he assured me, "but I like this peaceful life." Of course, he readily admitted, they were pampered in the sanitorium. "When I get a craving for something -- within reason -- they go out and get it for me." Reynaldo explained, adding that he had a great deal of flexibility -- he could go out whenever he wanted, to a parents' meeting at his son's school or just into town for some malt liquor or to go to the beach. For Reynaldo, this more than compensated for the restrictions which some of the other younger patients chafed at. There was also the sense of security the santorium provided. "I could go out, work, and come back here at night," he mused. "Or go out and come back periodically for a check-up. You can never miss the check-ups," he cautioned, "because what for someone else is just a simple cold is much more for us. We have to come here and tell them so they can deal with it in time." "Ah, and something else," he added. "Here, I'm working for the santorium. For the sanitorium, and for myself, too." Reyanldo and Maria Julia's house became a regular stopping point for me over the years as I became closer to a number of the patients, and they visited me and my children at times with their son who, like mine, was practicing martial arts. So when some people making a documentary on AIDS in Cuba wanted to interview a number of patients, it was only natural that they be among the group gathered on my back porch. But when the interviewer wanted Reynaldo to list some of the improvements PWAs had won over the years, he amazed all of us by saying, "Well, the first victory was the sanitorium." Although most Cubans saw the sanitoriums created for AIDS patients as a necessary measure to stop the spread of the disease, and many believed it to be in the best interests of the patients themselves, the restrictions on personal liberty that the sanatorial policy implied led almost everyone to consider the sanitoriums a necessary evil or, at best, a mixed blessing. How was that a "victory?" we asked. "You have to understand," he began in his slow drawl, "that when we first tested positive, we were a group of strong, healthy young men just back from overseas, eager to get back with our wives or girlfriends, to party, to be back on the streets. "Instead, we found ourselves in the Naval Hospital, with everyone looking very worried. We didn't even know why we were in there. And pretty soon we were feeling real cooped up. "Not that we didn't break out sometimes," he grinned. "Sometimes friends would sneak a bottle of rum into us. And once we tied a bunch of sheets together and climbed out the window. We played a lot of jokes on each other and the staff. "But we were still living in a hospital ward. So when we got a chance to move out to the sanitorium -- to live in real apartments, be able to walk around the grounds, have all the visitors we wanted -- that was a real improvement." The next victory, he told us, was getting to wear clothes instead of hospital pajamas. The third was getting the sanitorium administration to institute the same pass system that existed in other hospitals. "If you are in a tuberculosis hospital, or a general hospital for long-term care, or are recuperating from an operation or not quite ready for one, you get to go home on pass for the weekend and still have your bed at the hospital waiting for you, right?" he explained. "So we said we weren't sick, so we should have the same thing." There was only one catch: by now the patients as well as the staff knew that they had tested positive for a virus that was neither preventable nor curable, that could be transmitted through sexual contact and god knows how else. AIDS was by now a rampant epidemic in many countries, multiplying geometrically, killing thousands. How was the Health Ministry going to protect the rest of the population if they granted the PWAs request to go out on weekend passes? This was early 1986, just months after the first patients entered the sanitorium. They weren't even sure yet whether mosquitoes could spread the disease, but they did know that unprotected sex could. And exchange of other bodily fluids, like blood. What if one of the PWAs got into an accident? Cut himself? Had sex during her period? A stopgap measure was instituted: Yes, patients could go home on pass on Sundays. But they had to be accompanied by a staff person, medical student, paramedic, or some other chaperone who could both respond to any medical emergency, and oversee the situation to make sure the patient wasn't endangering anyone else. And patients had to start an intensive AIDS education program, along with psychological evaluations. Reynaldo's list of "achievements" or "victories" began to multiply. Once the education program was in place, patients deemed "responsible" were eventually allowed to go out on their own, in the care of their families. One-day passes became weekend passes, and PWAs soon found they could pretty much go out whenever they wanted-- sometimes for a week or more-- for a vacation at the beach with family, to take care of a sick parent, to visit relatives in a distant province. Patients whose work skills could be put to use within the sanitorium were offered jobs -- as office workers, doctors, nurses, lab technicians, accountants, mechanics, cooks, gardeners. And slowly, some began going back to jobs outside, or studying at the university. Patients sooned formed neighborhood political councils within the sanitorium, to resolve their own problems or discuss issues with the administration. The fact that the new director, Dr. Jorge Perez, "always has his door open to us" made this a lot easier. They also helped form GPSIDA, the patients' AIDS prevention group, to go out and speak to people in the community about how to protect themselves and others. Until then, most people were turning a deaf ear to the Health Ministry's attempts at AIDS education. Most people felt they could never get AIDS. It seemed too unreal to them: in Cuba -- people thought -- almost nobody gets AIDS, and if they do, they're put in a sanitorium. So why worry? But when "normal, everyday" people -- women and men, homosexual and heterosexual, old and young -- began identifying themselves as HIV positive at schools, dance clubs, other popular teenage hangouts, and on local and national tv programs, people started getting the message. Reynaldo and Maria Julia were among the first to let themselves be interviewed, videotaped and filmed to help get the word out. They were among the charter members of GPSIDA -- another first. By the time of Reynaldo's death, Cuba's program to prevent the spread of AIDS and care for those who are stricken -- arguably the most controversial and most successful AIDS program in the world -- had come a long way, with Reynaldo Morales and Maria Julia Fernandez advancing and helping it advance every step of the way. CUBA'S AIDS POLICY TODAYIt's worthwhile looking at the progression that they were part of: At the new stage of the program, people testing HIV+ and those with AIDS may -- as before -- receive complete residential care in one of Cuba's 14 provincial AIDS sanitoriums or, after a brief period of evaluation and education, they may opt to receive outpatient care from their family doctor, while maintaining most (but not all) the benefits formerly provided them in the sanitoriums. This removes the one dark side of a program that otherwise was universally heralded for its effectiveness in slowing the spread of the AIDS virus. The internationally recognized positive aspects of Cuba's program included:
The limitations of this program were primarily on the psychological and psycho-social level. The sanitoriums that were set up, while providing optimum overall care, were also highly paternalistic and imposed restrictions on patients' freedom of movement --less so over time, and for those who were deemed "responsible" -- but nevertheless galling to those who felt themselves capable of behaving in a mature and responsible way without someone supervising or judging them, and without being held accountable for the irreponsibility of others. On the plus side, people testing HIV+ have been provided with above-average housing in pleasant surroundings, a high-protein diet, daily access to specialized medical care, recreational facilities and counseling in an attempt to create a stress-free environment. Medicines (like AZT, gancyclovir, etc. were studied and imported from abroad). Patients are given regular blood tests and physical check-ups by medical staff who are on the alert for the first signs of any opportunistic infection which, if caught and treated early, can be controlled or eliminated. But despite increasing liberty of movement as the disease became better understood, the sanatorial system still placed more restrictions on the patients' mobility than was warranted by the nature of its transmission. Even after health authorities learned that AIDS cannot be spread by casual contact, it was still treated as a highly contagious disease due to the simple fact that unprotected sexual relations -- the norm in Cuba, as elsewhere -- was the predominant mode of transmission. An ethical dilemma plagued health authorities: How to protect the rest of the population from unnecessary risk (the responsibility of the Public Health Ministry) without imposing burdensome restrictions on those who carried the virus but were not yet ill? A solution was devised by Dr. Jorge Perez Avila, medical director of the Pedro Kouri Tropical Medicine Institute, when he was named director of the sanitorium in 1989, in consultation with PWAs, especially those who formed the Grupo Prevencion SIDA (GPSIDA, or Aids Prevention Group). The key factors in the new system, which safeguards public health but also permits ambulatory care for seropositive patients, is an education and evaluation program that enables the medical staff to demonstrate to health officials -- and to a general population nervous about the spread of the disease -- that most seropositives, once taught about the forms of transmission of their disease, and how to live with it (including their obligation to avoid placing anyone else at risk) can live normal lives outside the sanitoriums. This evaluation system had to be accompanied by a series of other measures -- some requiring economic investment not easy to come by in the current period -- before outpatient care could be put into effect, however. Among these were:
This latter step would have been impossible without the development of the patient-initiated and run GPSIDA -- PWAs like Reyanldo and Maria Julia who went out into the community, onto campuses, on radio and television, to spread the word that AIDS is here, it can be avoided, you needn't be afraid of People With AIDS but you should be afraid of the disease itself. Seropositve members of GPSIDA, at least in Havana, are the ones who inform people of their positive test results, provide counseling, support and education. Under the current policy, most people testing positive will be given a period of testing and orientation in a sanitorium, although based on pre-evaluations and GPSIDA's education program, some may pass immediately to ambulatory care. Not surprisingly, given the economic conditions and both medical and psychological factors, only a small percentage of patients have so far opted for outpatient care. Like Reynaldo and Maria Julia, most find far more reasons to remain IN the sanitoriums than to live outside them given the economic uncertainty of the current period. But the fact that they CAN choose brings the Cuban program to a plateau that could easily be described as "the best of both worlds." When asked why this was referred to as a "plateau" rather than the final stage of the program's evolution, however, an AIDS activist explained, "We will only consider that we have reached the final stage when there is a way to both prevent and cure the disease." For Reynaldo Morales, the discovery of a cure will come too late. But as a pioneer in the movement to develop a comprehensive program to stop the spread of AIDS in Cuba, he contributed to a policy that has probably saved hundreds of thousands of lives. Not a small accomplishment. |
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