The principle upon which the fight against disease should be based is on the creation of a robust body; But not the robust body created by the artistic work of a doctor upon a singular weak organism; rather the creation of a robust body by the work of the entire social collective upon the entire social collectivity. (Che Guevara. On revolutionary medicine, l960)
One of my earliest memories was being pulled into a New York public health documentary on urban poverty, complete with scenes of open rubbish bins, scrawny looking cats, East River rats the size of armadillos, rabid dogs and equal sickness-for-all. It was filmed on South Third Street in Williamsburg, Brooklyn when the neighbourhood was still a post-WW2 immigrant slum. As proud children of tough immigrants, we laughed at the visiting public health nurses, singing our anthem ‘Marguerite, go wash your feet, the Board of Health is across the street’ as they barged into our homes to check our heads for nits and our bodies for malnutrition, or worse. We chased the nurses away as we showed off our strength, picking up dirt from the pavement and putting it in our mouths. Our mothers had told us that it would take a peck of dirt to make any of us die.
Since then, however, I have been in the field as a medical anthropologist during several epidemics, from schistosomiasis, malaria, cholera, Chagas, bubonic plague, tuberculosis, HIV/AIDS, Zika and Chikungunya.1 The latter two arrived in Brazil in February 2015, just in time for a collapse of Brazil’s national healthcare system, the Sistema Unico de Saude.
In 1990, I began to study the HIV/AIDS epidemics in the US, Brazil and Cuba, each led by different public policies (Scheper-Hughes 1994). In 1981, at roughly the same time that AIDS first appeared in San Francisco and New York City, 2 Cuba faced its own crisis, when its military forces returned from Angola and Mozambique with a sickness that even the best tropical medicine scholars could not identify. In 1983, Fidel Castro first made a visit to Cuba’s Institute of Tropical Medicine ‘Pedro Kourí’ (IPK) accompanied by the president of Kenya. Fidel surprised the scientists who were then working on infant mortality when he asked the director of the institute what he and his colleagues were doing to stop an unknown, new syndrome from taking hold in the nation. Professor Gustavo Kourí, virologist and Director of the institute did not pay much attention to Fidel, but one of the doctors at the IPK, Jorge Pérez Ávila listened carefully to what President Castro had to say. He took it to heart.
Jorge told me: ‘Fidel said that nobody in the world knew much about this new virus. At that time, there were only a small number of cases in Africa and the US. I had just returned from Africa where I treated a Cuban international worker who was ill with an unknown virus’. After Fidel’s speech at the institute, the director boldly told Fidel that the new virus was too small a problem for the IPK. Fidel looked at him and pulled at his beard before he replied blankly: ‘You are wrong. AIDS is going to be the disease of the century, with many populations ravaged. It’s your responsibility to see that this does not happen in Cuba’. Although no one yet had an inkling of how the new virus was transmitted, Dr Jorge Pérez said he was ready to put aside his research on malaria to explore the new epidemic threat. He was later assigned to serve as medical director of the first Cuban AIDS sanatorium.
The first Cuban response to this new epidemic was a ban on imported blood derivatives in countries where blood banks were commercially owned (‘capitalist blood’). Next, the government tested for HIV antibodies beginning with all Cubans who had been out of the country since 1981. Then, as Cuba had done in earlier epidemics, the Ministry of Public Health, MINSAP, organized mass testing of young and older age adults and social groups who were sexually active or especially vulnerable. Both Dr Jorge Perez and the minister of public health, Dr Hector Terry Molinert, worked together to make sure that tracing the sexual partners of infected individuals followed the testing. My interviews with Dr Hector Terry in 1990 were edgy. He asked why HIV tests were not obligatory in the epicentres of the US HIV/AIDS epidemic, especially New York City, Miami and San Francisco. Based on my interviews with public health officials I replied that American citizens would never accept it.
Cuba opened its first HIV/AIDS sanatorium in 1986, in a rural suburb of Havana, officially named Santiago de Las Vegas, but locally referred to as ‘Los Cocos’. It was built on the large but abandoned estate of a colonial finca. At that time, the infection was seen as a military, medical issue, and Castro put the medical project in the hands of the Cuban military. The AIDS ‘sanatorium’ was thus run according to military structures, which led to savage critiques from AIDS activists in San Francisco and Miami, who described it as a military prison for gays in Cuba. Indeed, from the old photos, it did look like a military barracks. However, it was more inviting when the old colonial villa was refurbished and opened to house the HIV/AIDS military heroes who had returned from Africa. Gradually, new buildings were built, and a wall surrounded the military AIDS estate. In the beginning, most of the staff were military doctors, until 1986 when a new group of people with the same infection, who had never been in the military or lived in Africa, began to show symptoms of HIV. Most of these second-generation HIV+ patients were gay or bisexual.
While there was no cure, the government put their energy into containing the AIDS virus. All those whose tests proved positive were sent to the sanatorium, where they were asked to identify the names – promised to be confidential – of those with whom they had sexual relations. The names were tracked and brought to Los Cocos for testing. The ‘positives’ would have to reside at the sanatorium until a cure or a vaccine could be developed. Dr Jorge insisted that the sanatorium was not based on quarantine – an absurd idea, as the virus was spread by contact with infected blood and by sexual relations. I visited the sanatorium in 1990, 1991, 1994 and 2000 where I was free to walk anywhere and to talk with anyone. I took notes, visited the apartments and homes of the residents, and observed their daily routines and their relations with each other and with the doctors and nurses. Los Cocos was neither a hospital nor a prison. Nor was it anything like we might call a sanatorium – a closed and isolated place where sick people suffering from tuberculosis or other respiratory and highly contagious diseases are kept in medical quarantine.
The sanatorium at Los Cocos was a blend of scientific data gathering of epidemiological statistics, AIDS research and intensive medical and psychological care and treatment for all the patients. It was the best of Cuban social and socialist medicine. I may chase my readers away by arguing that the Cuban AIDS project was democratic insofar as its goal was to diagnose, treat and to support all those who had a positive test. Dr Perez wanted to know all the patients as individuals, and he spent most of his days walking and talking with the clients and asking them what changes were needed to enrich their lives. There were some problems between the two different classes of people: the Cuban soldiers who had worked in Africa, and the men (and some women) who had never gone abroad but had sexual relations with men who were carriers of the virus. The so-called sanatorium was then somewhat divided between the military and civilian patients. However, all were treated the same, and all were given the only drug then at hand, AZT (100-300 mg per day), with marginal results.
Over time, the patients began to trust Dr Perez and together they made new accommodations to fit people’s basic needs: more freedom, real and paid work, entertainment, music, art and creativity, sports and the right to safe sex. After the first three months of open-ended educational seminars, the patients were tested about their knowledge of the sexual transmission of the virus and the risks of transferring it to healthy partners. A committee, which included other patients, made the decision as to when a patient would be deemed ‘guaranteed’ – that is, trustworthy regarding HIV/AIDS transmission and the dangers of drugs and alcohol. Trusted patients were allowed to return to their families or friends on weekends and to take days off to do errands outside the complex. Some of the patients I met held jobs in the sanatorium, and others were permitted to teach at local schools and universities or even to return to the day jobs they once had.
Many contradictions played out in the so-called sanatorium. I met with the official epidemiologist at Los Cocos, who kept all the records and statistics bearing on the growth of the epidemic. He was delighted to learn that I knew University of California, Berkeley professor, Peter Deusberg, who was an infamous AIDS heretic. Deusberg did not believe that all the deaths were the result of a virus alone. He insisted that there were other factors, such as recreational and pharmaceutical drug use, that made people sick. The epidemiologist was a fan of Deusberg. Hearing this, one of the patients replied: ‘If you really think that AIDS is not caused by sexual transmission, then why am I here at all? If you are correct, I will kill you’, he said.
The bottom line, however, is that the containment of sexually active HIV/AIDS patients stopped an epidemic which neighbouring Caribbean countries, such as Haiti, could not (Farmer 1999). The numbers of cases and of deaths in the sanatorium were far fewer per capita than the AIDS deaths in New York City and San Francisco. Many global AIDS experts and the World Health Organization (WHO) praised the Cuban public response to the epidemic. In 1993, New York City, which had roughly the same population as Cuba, had 43,000 cases of AIDS, while Cuba had only 900 validated by the WHO. The sanatorium complex made sense within Cuban structures of social medicine and values of solidarity. Cuba was the only country that stopped the virulent spread of the epidemic before the discovery of retroviral drugs. As soon as these ‘miracle’ drugs became available in Cuba, the sanatorium became an ‘open door’ and voluntary community in 1994. Many patients chose to continue living there, and in some cases, to bring their partners and children to live with them. One story not yet told is how the patients at Los Cocos, over time, created the first official, open, gay community, which was recognized by the staff led by Dr Jorge Perez and his assistants. As the sanatorium changed, so did Dr. Perez who once told me that he had changed from a typical macho man to a softer person, one who now supports what he calls “love without boundaries.”
In 1993, I travelled to Cuba with CBS’s 60 minutes, for a segment on the AIDS sanatorium at Los Cocos. Dr Perez agreed to their visit as long as they would be open to a quite different point of view. The segment was played on US CBS Television on 3 October 1993. It was the first US media TV report that was critical but respectful and truthful about the positive results of the Cuban containment of HIV/AIDS. The brief documentary received an Emmy Award. Following my field trips to the sanatorium, I invited Dr Jorge and two of his patients to give a public lecture at the University of California, Berkeley, to explain the logic of the Cuban AIDS project. During that time, California Americans saw the idea of an AIDS sanatorium as a human rights violation.
To bring Dr Jorge Perez and two of his patients to speak at the University of California, I needed an official letter from our chancellor to obtain visas for visitors from an ‘enemy’ country. Chancellor Chang-Lin Tien was enthusiastic about the invitation. I warned Tien that the university regents might be critical. The chancellor shrugged his shoulders and said: ‘Do you think we could bring Fidel Castro here as well?’ He really meant it.
When Chang-Lin Tien was an undergraduate at Princeton University in 1979, Fidel Castro made a visit to the university and to New York City. Tien was impressed with Castro and said that in his opinion, the US made a bad mistake in refusing to support Fidel at that time. So, with the support of our chancellor, Dr Jorge Perez and two of his patients arrived at our university. One of the Cuban patients had been infected while working as a Cuban doctor in Angola; the second was a civilian who contracted the virus in Havana and who worked inside the sanatorium as an IT manager.
As the Cuban doctors and researchers learned more about the virus, and after the arrival of antiviral drugs, the sanatorium at Los Cocos became voluntary. What an ‘open door’ sanatorium means is difficult to translate. After my third visit to the Cuban ‘complex’, I told Dr Perez that should I ever become seriously ill, I would ask permission to come to the sanatorium. To me, it was one of those practical utopian communities that can emerge from what Goffman called a ‘total institution’. Perhaps only a woman who once hoped to be a Carmelite nun and later to be a revolutionary Marxist heath agent in Brazil during the dictatorship. I suppose I was a bit of each.
The worst mistake about the AIDS epidemic in the US was the decision to make HIV testing optional and voluntary, both for those who were ill and those who had lost a sexual partner to the virus. US epidemiologists, public health leaders and bioethicists argued that mandatory mass AIDS testing would result in AIDS positive individuals going underground. But without the mandatory tests, America was flying blind into and throughout the AIDS epidemic, one that cost the deaths of thousands of people. Cuba managed to head off a potential disaster, especially given the 40,000 Cuban troops returning from Angola and Mozambique, many of whom arrived home with HIV and full-blown AIDS. The Cuban sanatorium at Los Cocos was an authoritarian institution which fermented anger and criticism in the United States, but praise in countries in Europe, Latin America, Asia and Africa that were struggling with the epidemic.
When the sanatorium became a voluntary in 1994, many patients chose to remain living in the community in which they had been well treated and where they had created friendships and solidarity. This reminds me of how the radical Italian psychiatrist, Franco Basaglia, deinstitutionalized mental health patients by first turning the traditional ‘mad house’ (manicomio) into an experiment in democratic psychiatry that resulted in psychiatry Inside out and a ‘revolution within the revolution’ (Scheper-Hughes & Lovell 1987).
It is no surprise that hundreds of Cuban doctors have been sent around the world to assist nations grappling with the COVID-19 pandemic. They have flown to at least 14 countries, where they have worked side by side with traumatized doctors like those in Bergamo, Italy, who had to make decisions that no doctor would want to make: deciding who would be most likely to live and those who had to be left to die. The Trump administration has ridiculed the Cuban doctors as medical diplomats for Cuba, while Cuba is also battling its COVID-19 epidemic.
Meanwhile, the US president cannot recall from day to day whether COVID-19 is over or not, or who is next to be blamed for the miserable failings of his administration. The COVID-19 epidemic has now taken 100,000 American lives. We first learned that the victims were elderly. Then we learned that most of the dead came from poor communities. Lastly, we learned that a disproportionate number of the deaths just happened to be black.
University of California, Berkeley
Farmer, P. 1999. Infections and inequalities: The modern plagues. University of California Press: Berkeley.
Perez Avila. J. 2016. A Doctor and his Patients talk about Aids in Cuba. Havana: Ediciones Abril
Scheper-Hughes, N. 1994. AIDS and the social body. Social Science & Medicine 39(7): 991-1003.
— & A.M. Lovell 1987. Psychiatry inside out: Selected writings of Franco Basaglia. New York: Columbia University Press.