In the fall of 1988, the Los Angeles Times published one of the first feature stories in the U.S. media about the Cuban HIV sanatorium system. The article quoted a New York City doctor that had visited Havana, who called the institutions “pleasant but frightening,” and that their use as a public health response to HIV could “only be termed totalitarian.”
From 1986 until 1994, Cuba quarantined people living with HIV in medical facilities called sanatorios, or sanatoriums. Though tuberculosis sanatoriums were common throughout the world during the late nineteenth and early twentieth centuries, Cuba was the only country to open such institutions in response to HIV. It was a controversial public health approach that drew fascination and criticism from U.S. and other commentators.
Freedom of movement, human rights advocates proclaimed, was fundamental to ethical governance. Therefore, isolation was dehumanizing, and ultimately stigmatized the communities most at-risk for infection. Dr. Jonathan Mann, the World Health Organization’s first Director of the Special Programme on AIDS, a body which preceded UNAIDS, called the sanatoriums “pretty prisons.”
Meanwhile, advocates have pointed to the success of containment as a public health tool and the high standard of living provided to those residing in the sanatoriums. In 2009, POZ Magazine reported on former patients who refused to leave the sanatoriums once they became voluntary in 1994. At the time of the policy change, they told reporters “we have many friends, we feel useful, we keep busy.” Not only were the sanatoriums places where medical services and scientific research could be concentrated in the face of a global epidemic, they served as a community for many despite the hardship of isolation.
In the context of a looming economic crisis due to the instability of the Soviet Union, alongside the U.S.’s crippling economic embargo, the sanatoriums made sense to the Cuban government in a society committed to universal healthcare and the prioritization of the collective good over individual agency.
By 1984, scientists had identified the human immunodeficiency virus (HIV) as the cause of AIDS. In the United States, civil society groups put pressure on the government, media, and the pharmaceutical industry to respond to the growing AIDS crisis. But President Ronald Reagan did not address AIDS publicly until 1985, a silence that devastated communities throughout the United States and Puerto Rico. In fact, by 1992, Puerto Rico had 8,000 AIDS cases, or 229 per 100,000 residents, while Cuba had just 95—or a rate of one per 100,000 residents.
Under Fidel Castro, Cuba had a plan to address the impending crisis from the onset. It established the National AIDS Commission in 1983, three years before the country registered its first case of infection. The Commission’s first course of action was to destroy all blood products collected for transfusions, halting transmission to the hemophiliac population who might be at-risk from those existing blood samples.
Conversations about the sanatoriums unfold in the context of these debates. Some concern “los frikis”—a community of punk-rockers, some of whom willingly infected themselves to access the comforts of the sanatoriums, unaware of the ramifications of HIV. Other stories circulate about individuals imprisoned for having protected sex outside the confines of the facilities.
Decades later, how do Cubans remember HIV and the sanatoriums? In this interview, I discuss HIV policy in Cuba with Dr. Jorge Pérez Ávila, Cuba’s renowned HIV expert, and Alfredo González, a medical anthropologist and Program Coordinator at Hondureños Against AIDS who visited the sanatoriums in the 1990s. Dr. Pérez Ávila led HIV policy in Cuba from 1989-2000—the worst years of the crisis—and served as Director of the Santiago de Las Vegas Sanatorium in Havana, as well as the recently-retired Director of the Tropical Medicine Institute—the country’s leading medical research center. He was in New York earlier this year promoting the English translation of his book, Confessions of a Doctor.
This interview has been edited for clarity.
Julian DeMayo (JD): What is the Tropical Medical Institute?
Dr. Jorge Pérez Ávila (JP): The mission of the Tropical Medicine Institute is to guarantee the health of the Cuban population through research in microbiology, parasitology, and epidemiology of infectious diseases. There are 14 research institutes throughout the country. We also have a big hospital with 170 beds that provides medical services.
JD: What were the sanatoriums?
JP: Many countries around the world have used sanatoriums to treat infections like tuberculosis and leprosy, keeping people with those infections in one place. These were largely phased out in the ‘40s and ‘50s. In Cuba we also had sanatoriums, and with HIV we wanted the opportunity to study the disease and contain the epidemic while treating those infected. There were no antiretrovirals at the time, but we treated opportunistic infections [infections brought on by weakened immune systems] and did prevention and education work. The decision to open the sanatoriums for people living with HIV was made in 1985, and the first patients arrived on April 29, 1986. At the beginning, everyone was living in the same house but we started to build facilities as the epidemic grew.
JD: How many patients were in the sanatoriums at their height?
JP: I’m going to guess around 10,000 people.
JD: What were the sanatoriums like?
JP: In each house there was a dining room, a kitchen, a living room, and there were bedrooms that accommodated two patients. There were two apartments per house: one on the bottom floor, one on top. Then we had buildings with three bedroom apartments, six people per apartment. That was another modality. Onsite, we had drivers, physicians, nurses, social workers, cleaning, and operation staff. The patients received a high calorie diet—4,500 calories per day, six meals a day. We treated opportunistic infections and provided immunological medications. The patients also had color television and air conditioning, rare privileges at the time.
JD: Until when was this policy of isolating HIV positive patients implemented?
JP: Until 1994. But this wasn’t real isolation, the patients were always allowed to go out, visit their families, and receive visits as well. They had to do so with acompañantes, workers that would accompany them at all times. We wanted to prevent people from having unprotected sex. We put the acompañantes there to help the patient with anything they needed. The worker had to report on the behavior of the patient. Usually the patient and the worker got along well, and we tried to match them according to gender and age, but patients could also reject and request new acompañantes. The patients were allowed to leave the sanatorio for 24 hours at a time, but if they lived far from the facility, they would be allowed to spend a week at home every 45 days.
Alfredo Gonzalez (AG): When you [Julian] say isolation, you reduce the whole policy to that, disregarding the fact that there was healthcare, that there was food, all kinds of services—it wasn’t just isolation. This was a different type of epidemic, let’s start with that. The people who first showed up as HIV positive in Cuba shaped in great measure the Cuban response.
JP: You cannot talk about the sanatoriums without considering the general policy of Cuba on AIDS. We were doing testing; we were doing prevention and research at the same time. Isolation was never a Cuban policy in itself—that was something news in the United States reported, in addition to the supposed targeting of gay men. But the first diagnosed cases of HIV in Cuba were heterosexuals coming from Africa. These were the first patients to move to the sanatoriums.
AG: In Cuba, the first people that were diagnosed HIV-positive were people returning from volunteering in Africa. These were wounded warriors—national heroes—a completely different demographic [than in the U.S.] So, the public conception of the person living with HIV in Cuba was different than that of the person living with HIV in the rest of Latin America or in the United States. And there is this tendency in the United States to reproduce what is seen here and project it onto other contexts... that is a problem.
JP: The first patient we detected got HIV from a female sexual partner that worked as a domestic worker. We traced four Cuban infections to the same person. She did not do sex work though there may have been transactional sex. But there were also Cuban soldiers in Punta Negra [Pointe-Noire] in The Republic of Congo, near the border of Angola and the Democratic Republic of Congo, that frequented a bar called Parafifi. There, they reported having sex with sex workers and became infected.
JD: Is the epidemic in Cuba still largely affecting heterosexual people?
JP: No, now it’s mostly men that have sex with men, it’s 74% this population.
JD: And when did that change?
JP: Around 1993-94.
JD: How do you explain that?
JP: We stopped the transmission from Africa, thanks to our efforts and because we stopped sending people there due to the economic crisis. Following the fall of the Soviet Union, the epidemic started growing nationally. We promoted condom use but we didn’t have the funds to purchase condoms. We didn’t have funds to do media campaigns, and many people didn’t know they were infected. We had electricity shortages—sometimes 15 hours a day without electricity. Those were bad years for Cuba. But the transmission was slow in comparison to other countries. Later, we were able to work with NGOs to obtain condoms and do propaganda; we joined UNAIDS, and then The Global Fund to Fight AIDS, Tuberculosis and Malaria (GFATM) came in 2001. Everything changed with the grants we were getting and the generic medications we started producing ourselves. Currently, the infection rate is only .4% of the population between people 15-29 years of age.
JD: What medications was Cuba producing?
JP: The ones that were available at the time, the ones that today we know are toxic like AZT, neverapin, and Indinavir. Those were the first ones. We learned about protease inhibitors at the Vancouver AIDS conference in 1996. I sent Fidel a letter because we did not have enough money to treat everyone. I asked him to at least buy medications to treat the children. And he replied, “that is not fair, we have to find a solution for everyone.” That is how the idea to produce our own medications began. Cuba already produced 80% of the medication it consumed, and we thought we could join countries like Brazil, China, and India in the production of generic HIV medications.
JD: How did the decision to close the sanatorios come about?
JP: We did not decide to close the sanatorios. We progressively transitioned to an ambulatory care system and made the sanatoriums optional. At first, people didn’t want to leave; only 20% left. The sanatoriums had good conditions: people were living well, they had a good diet, and they trusted the physicians and staff that were there. Eventually new cases rejected the sanatoriums because they didn’t want to restrict their lives. And we stopped promoting them. So, we trained all the medical physicians and family doctors throughout the country and created a diverse group of professionals that could take care of patients living with HIV and AIDS. People started trusting their own doctors. Little by little, there were fewer and fewer people in the sanatorios until we decided we only needed three (down from 14): one in Havana, one in Santo Espiritu, and one in Holguín. We kept those because we thought there would always be people that did not have family or who were rejected by their families. They were also for people who were co-infected with tuberculosis or had other disabilities that were easier to care for at the sanatorium. There were also some people that would spend some of the day at the sanatorium and then would go home at night.
JD: Did Fidel ever visit the sanatorios?
JP: Not when I was there, but he did prior to 1989 [the year Dr. Pérez became Director].
JD: How does the U.S. embargo on Cuba continue to affect Cuban people living with HIV?
JP: The embargo is still as powerful as ever. We are not able to trade, we are not able to obtain loans, to work with American currency, nor transfer with American banks. This extraterritorial law punishes banks with penalties for working with Cuba, and also cargo ships that go to Cuba [a ship that docks in Cuba cannot visit the United States for six months afterwards]. It’s difficult to understand from the outside, but who can live in this world and not trade goods or function without loans? We can’t get certain cancer drugs or new therapies that are being produced here in the U.S. We have to wait until they appear in another country for a generic version to be created. But imagine if there is a condition that only 51 children have—we simply do not have the capacity to produce a medication for those 51 children. And to purchase the medication costs us a fortune because of the embargo. The same applies to technology. It is a difficult situation that is acutely felt by people living with HIV.
Earlier this year, Dr. Perez Ávila officially retired from the Pedro Kouri Institute of Tropical Medicine; the center continues to lead HIV research on the island. In 2015, Cuba became the first country in the world to eliminate mother-to-child transmission of HIV and syphilis.
Through Hondurans Against AIDS, Alfredo González works with Garifuna populations in the Bronx and Central America–a community with one of highest HIV prevalence rates in the Americas. González has written about the intersection of HIV and poverty in Honduras.
Conflicting patient opinions about the sanatorium system persist today. While the system succeeded in curbing infection rates, the burden and price paid by patients was high. Their lives were disrupted by both disease and state policy. To remember the institutional history of the sanatoriums should not undermine the complex memories and dynamic feelings about them that former patients and Cubans at-large have.
From a U.S. perspective, the legacy of the sanatoriums reflects the complexity of conflicting human rights narratives. Challenging views that quarantine was a violation of human rights, Dr. Perez Ávila countered in an interview in 2010: “I simply don't understand how anyone can talk about respecting human rights, about liberty, when [in the U.S.] there are AIDS patients waiting hours to see doctors, AIDS patients who can’t afford the latest medicine, AIDS patients living on the streets without housing, food or medical care.
Julian de Mayo is a media activist and former artist-in-residence at the Queens Museum, as well as former Communications Associate at the NYC Mayor’s Office for International Affairs. He is interested in narrative change and complicating historical memory. Twitter: @J_deMayo.
All photos courtesy of Miguel Angel Fraga, former patient of sanatorio Santiago de las Vegas and author of Un rincon cerca del cielo: entrevistas y testimonies sobre el SIDA en Cuba.
