Cuban HIV/AIDS care leads the world

By Karen Lee Wald HAVANA — On August 13, Reynaldo Morales, aged 42, died of AIDS. Reynaldo wasn't the first but his story is worth telling because it is an allegory of the progression of HIV/AIDS care in Cuba. When Reynaldo Morales returned from military service as an international volunteer in Angola in early 1986, he was part of the first group of 23 patients who opened the new AIDS sanatorium in Santiago de las Vegas. In 1989 he and his wife, Maria Julia, (who also became infected) were the first patients at the sanatorium to be offered the option of returning to their home and jobs as out-patients. A few months later they were the first of many to turn this option down. The sanatorium — a sizeable community of attractive, modern one-family homes and duplexes set among lush gardens on an old rural estate on the outskirts of Havana — had become home to Reynaldo and his family. I first met Reynaldo and Maria Julia at a time when the Cuban health officials had begun talking about patients who had been through the HIV/AIDS education, medical and psychological evaluation programs returning to their former lives. "If you were given this possibility, what would you do?", I asked them. They both said they wouldn't leave. Maria Julia explained: "We have our jobs waiting for us, and we're getting our complete salary as though we were still working there, and my friends have all shown me a lot of solidarity", 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 sanatorium than outside. "I have a carpentry shop and a small electrical repair shop", he said. "In the beginning I didn't have many customers, but now I have more than I can handle ... I feel good here, I'm relaxed." "I'm not afraid to face anybody", Reynaldo assured me, "but I like this peaceful life". He admitted they were pampered in the sanatorium, adding that he had a great deal of flexibility — he could go out whenever he wanted, to a parents' meetings at his son's school, into town for some malt liquor, or 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 sanatorium 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." "The other reason", he said, is that "here, I'm working for the sanatorium — and for myself too." Although most Cubans saw the sanatoriums created for HIV/AIDS patients as necessary to stop the spread of the virus, the associated restrictions on personal liberties led almost everyone to consider the sanatoriums a necessary evil or, at best, a mixed blessing. Yet Reynaldo believed that the establishment of the sanatoriums for people with AIDS was the first victory in the struggle for the health, dignity and rights of Cubans with AIDS. "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. "Living in a hospital ward you feel very cooped up. So when we got a chance to move to the sanatorium — to live in real apartments, able to walk around the grounds and have all the visitors we wanted — that was a real improvement." The next major victory, he said, was getting the sanatorium 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, you get to go home on pass for the weekend and still have your bed at the hospital waiting for you", he explained. "We said we weren't sick, so we should have the same thing." The problem was that then, early 1986, the health ministry had the view that the virus was neither preventable nor curable, and knew that HIV/AIDS was a rampant epidemic in many countries. Its key concern was how to protect the whole population if it granted the request for weekend passes. A stop-gap measure was instituted. Patients could go home on Sundays but only accompanied by a "chaperone" who could respond to any medical emergency, and oversee the situation to make sure the patient wasn't endangering anyone else. In addition, patients had to start an intensive AIDS education program along with psychological evaluations. Once the program was in place, patients deemed "responsible" were eventually allowed to go out on their own. One-day passes became weekend passes, and sanatorium residents soon found they could pretty much go out whenever they wanted. Patients whose skills could be put to use within the sanatorium were offered jobs — as office workers, doctors, nurses, technicians, accountants, mechanics, cooks, gardeners. Some began going back to jobs outside, or studying at the university. Patients soon formed neighbourhood political councils within the sanatorium, to resolve their own problems or discuss issues with the administration. They also helped form GPSIDA, the AIDS-prevention group, to speak to people in the community about how to protect themselves and others. Sero-positive members of GPSIDA inform others of their positive test results, and provide counselling, support and education. Reynaldo and Maria Julia became charter members of GPSIDA and were the first to let themselves be interviewed, videotaped and filmed to help get the word out. Most people had been ignoring the health ministry's attempts at AIDS education. 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 hang-outs, and on local and national TV programs, people started to get the message. 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 HIV/AIDS program in the world — had come a long way. The internationally recognised positive aspects of Cuba's program include the existence of a well-functioning, national health care delivery system with an emphasis on prevention and no cost to the patient; extensive (but not mandatory) testing of Cubans returning from long periods abroad, and routine testing for HIV when other blood tests are administered to the general population; and highly developed facilities and training of specialised staff to care for people from the time they test positive. Cuba has achieved the world's lowest rate of HIV infection from blood transfusions by halting importation of blood products while testing the country's entire blood supply and all new blood donations. It has also almost totally eliminating peri-natal transmission by testing all pregnant women. Because Cuba provides free, safe abortion services many HIV positive women are able to choose to terminate their pregnancy. In addition to studying and importing medicines (like AZT, and gancyclovir) the Cuban government has undertaken an extensive research program aimed at finding a preventive vaccine or cure. Today, people testing HIV-positive and those with AIDS may — as before — receive complete residential care in one of Cuba's 14 provincial AIDS sanatoriums or, after a brief period of evaluation and education, they may opt to receive out-patient care from their family doctor, while maintaining most (but not all) the benefits formerly provided them in the sanatoriums. This new element of choice removes the dark side of a national AIDS care program that otherwise was universally heralded for its effectiveness in slowing the spread of the AIDS virus. In the past, while the sanatoriums provided optimum overall care, they 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 quite capable of behaving in a mature, responsible way without supervision, and without being held accountable for the irresponsibility of others. The unwarranted restrictions overshadowed the facts that, through the sanatorium system, people testing HIV-positive have been provided with above-average housing in pleasant surroundings, a high-protein diet, daily access to specialised medical care, recreational facilities and counselling in an attempt to create a stress-free environment. It was in 1989 that doctors, in consultation with AIDS patients, especially those who formed GPSIDA, devised a solution. The key factor in the new system, which safeguards public health but also permits ambulatory care for sero-positive 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 virus — that most sero-positive people, once taught about the forms of transmission of the virus and how to live with it (including their obligation to avoid placing anyone else at risk) can live normal lives outside the sanatoriums. This evaluation system was accompanied by a series of other measures — some requiring economic investment not easy to come by in the current period — before out-patient care could be put into effect. Sanatoriums had to be built in each province so that all patients would have access to state-of-the-art care. Family doctors had to be trained in each community where sero-positive people would be living to provide the day-to-day attention the patients had been receiving in sanatoriums. Social workers and sexual education teams had to educate the communities and workplaces to which sero-positive people would be returning to prevent discrimination against them. A massive HIV/AIDS education program had to be developed throughout the country so that responsibility for preventing the spread of the virus would not fall exclusively on those who already knew they were sero-positive, but would be shared by the rest of the population. A second aspect of this program would be to teach the population as a whole to welcome and care for people with AIDS. This last step would have been impossible without the development of the patient-initiated and -run GPSIDA — people with AIDS like Reynaldo and Maria Julia who went out to spread the word that AIDS is here, that it can be avoided, and that you need not be afraid of people with AIDS, but you should be afraid of the virus itself. Not surprisingly given the economic conditions, combined with medical and psychological factors, only a small percentage of patients have so far opted for out-patient care. But, combined with the high levels of care provided, the fact that they can choose makes the Cuban program "the best of both worlds". As one AIDS activist explained, however, "We will only consider that we have reached the final stage of our program when there is a way to both prevent and cure the virus."