Lucille Hubbard is a tiny woman. Lucille, not her real name, is poor, black, and dependent on Medicaid and public assistance. After leaving the West Indies for New York as a young adult, Lucille made her living caring for people in need. Before turning 25, however, she learned that she suffered from untreated hypertension and kidney disease. Her physician at a large public hospital told her that her end-stage renal disease was dire. She would need dialysis while waiting for a transplant, or she would die. “I went through so much in my life,” Lucille said. “This seemed like the last straw.”
After a long struggle over her resident status, Lucille obtained her green card and was put on dialysis while waiting for a donor kidney. After several frustrating years waiting for the United Network of Organs Sharing (UNOS) to offer Lucille what she needed—a dead man or woman’s kidney—she finally received a transplant from a brain-dead donor. But the transplant failed after a few years when she rejected the kidney. A serious heart condition and severe anemia made it impossible for Lucille to endure regular dialysis treatments. She tried to find a living donor among friends and relatives, but those who agreed were bad matches.
Her health rapidly deteriorating, Lucille considered an illegal transplant abroad from a paid living kidney donor. Lucille was put in touch with an Israeli-led syndicate of organ brokers, part of a worldwide network of transplant traffickers. The brokers suggested a “transplant tour” to Turkey or Romania, but the price of the prearranged package deal to Turkey was an astronomical US$180,000, and the cheaper option of rural Transylvania was frightening. Lucille feared that she might reject a kidney from a Romanian or Turkish peasant. She needed a cheaper alternative and an organ from a person who was, she felt, biogenetically “closer” to herself, preferably a kidney from a black person. “I am not a racist,” she told me. “But I was afraid of going all that distance and facing another organ rejection.”
Then Lucille got the call she was hoping for. A broker arranged a bargain transplant tour package: US$65,000, including the US$6,000 fee to pay a poor donor to forfeit a spare part. A kidney seller had been found in a slum of Recife, Brazil: a strong, healthy, Afro-Brazilian man with an O (universal donor) blood type. But Lucille and her donor would have to travel halfway around the world to a private transplant clinic in a prestigious hospital in Durban, South Africa.
The New Medical Ethics
The neo-liberal adjustments of societies to meet the demands of economic globalization have been accompanied by depletion of traditional modernist, humanist, and pastoral ideologies, values, and practices. New relations between capital and labor, bodies and the state, inclusion and exclusion, belonging and extraterritoriality, have taken shape. Some of these realignments have resulted in surprising new outcomes: for example, the demands for “medical” and “sexual” citizenship in countries such as Brazil and India, which have challenged international patent laws and trade restrictions to make lifesaving drugs available. Others—for example, the spread of paid surrogacy in assisted reproduction—have reproduced existing inequalities.
These trends are starkly crystallized in the global markets in bodies, organs, and tissues, which supply the needs of transplant patients willing to travel great distances to procure them. But rather than lament the decline of humanistic social values, I recognize that the material grounds on which they were based have been altered almost beyond recognition.
The entry of market incentives into organs procurement has thrown into question the transplant rhetoric on “organs scarcity.” There is obviously no shortage of desperate individuals willing to sell a kidney, a portion of their liver, a lung, or a cornea for a pittance. While erasing one vexing scarcity, the organs trade has produced a new one—a scarcity of transplant patients of sufficient means and willingness to break, bend, or bypass laws and longstanding codes of medical ethical conduct. The organ trade depends on four populations: desperate buyers, equally desperate sellers, renegade surgeons, and well-organized organs brokers.
Organs markets require a radical breach or highly selective use of classical medical ethics, based on a blend of Aristotelian virtues and the Hippocratic ethic of purity, loyalty, compassion, and respect for the dignity of the patient. In the Hippocratic tradition of medical ethics, the physician owes his loyalties to the patient alone, as if society, let alone the rest of the world, did not exist. This tradition has allowed many esteemed transplant surgeons to turn a blind eye to private arrangements that violate existing laws.
In response to the privatization and commercialization of transplant medicine, many surgeons espouse a post-humanist utilitarian ethic. The late transplant nephrologist Michael Friedlander explained his own acceptance of kidney trading to advance a greater good: “Recently I was told that I am a utilitarian. I had always considered myself a humanitarian, but I have since developed some doubts about my beliefs.” He was convinced by the favorable outcomes of his post-transplant kidney patients, both Jews and Arabs, who had traveled abroad for a transplant from a living donor. “I would do it myself,” he told me on many occasions.
Indeed, the kidney trade evokes Primo Levi’s timeless moral and ethical gray area. One will go to great lengths to save or prolong one’s own life, but at what cost to another person’s life, and to such cherished social values as social solidarity, justice, and equity that had previously informed organ donation practices?
Before leaving for Durban, Lucille had her blood drawn at a New York City hospital. Meanwhile, blood was drawn for cross-matching in Recife, Brazil. After a strong, healthy man was identified as a compatible donor, contracts were signed, false affidavits witnessed, and Lucille briefed on her arrival in South Africa. She would have to pretend that the impoverished stranger, dressed in a blue polyester running suit, and with whom she could not communicate a single word, was her first cousin. “I am a poor, God-fearing woman,” Lucille said. “I didn’t want to lie and I never wanted to hurt anyone. I just wanted a few more years to live.” The South African doctors and surgeons seemed too busy to ask questions. The operation took only a few days.
Soon after Lucille returned to New York with her new kidney, she encountered the first of several aftershocks. Medicaid would not cover anti-rejection medication until she showed her transplant records and hospital discharge papers. She had checked out of the transplant clinic at St. Augustine’s Hospital with nothing but her clothes, a few souvenirs, and a warning from the broker not to disclose what had transpired. Lucille, her donor, and their surgeons had broken the law: South Africa’s 1983 Tissue and Organs Act prohibits the buying or selling of organs, tissues, and other body parts. In signing a false affidavit stating that her donor was a blood relative donating his kidney freely and altruistically, Lucille was guilty of fraud and criminal conspiracy. In traveling with a tourist visa to engage in an illegal exchange, Lucille and her donor also committed visa fraud.
Lucille contacted the doctors in Durban. They faxed back a discharge report stating that Lucille received a kidney transplant at the Netcare clinic in St. Augustine’s hospital on August 1, 2003. And so Lucille got the drugs she needed.
Her second aftershock was worse. It occurred when she opened the New York Times on December 8, 2003, and saw a photo of two young Brazilian men and a headline that read: “14 Arrested in the Sale of Organs for Transplant.”
“Put yourself in my shoes,” said Alberty da Silva, a semi-literate 38-year-old laborer and night watchman from the slum of Areas, near Recife’s international airport. Despite his reputation as a notorious ladies man and the father of a few children by different women, Alberty is anything but a deadbeat dad. After he tucks his children to sleep on a piece of foam on the floor of his shack, Alberty stretches out in the garbage-strewn front “yard” to sleep under the stars.
Alberty came up hard as a child. His mother was forced into sex work to feed 11 children, and as a small child Alberty knew hunger and humiliation. “My mother had to sell her own flesh to keep us alive,” he said, “but her sacrifice made us all into outcasts. I never forgot it and I didn’t want my own children to suffer the way I had.” When he heard rumors circulating that you could sign up to sell a kidney for US$10,000, Alberty sought out the brokers: a retired military police captain, Ivan Bonifacio, and his sidekick, a tall, “mean-looking” guy with a thick accent named Gaddy.
To Alberty’s surprise, Gaddy was Gadalya Tauber, a retired 67-year-old Israeli Defense Force policeman. On learning that Brazilians would donate to Israeli patients, Alberty asked, “Can it work that way?” Gerson, a nephew of Captain Ivan, assured him that there would be no problem because “under the skin, all men are brothers.” Gerson offered Alberty US$10,000, airfare to South Africa, and all his expenses. He was promised excellent medical care at a luxury hospital, and he might even get to travel afterwards—just for giving away a kidney he didn’t need. Gerson told Alberty that one kidney works while the other sleeps; the surgeons would remove his sleepy kidney and leave the good one.
By the time Alberty’s blood was tested at a clinic in Recife and his passport and visa were procured, the payment for a fresh kidney had fallen to US$6,000. Competition among kidney sellers was so keen that the brokers could be choosy and pay less. Between May and November 2003, more than a hundred people from Recife had signed up as sellers; 34 of them, including Alberty, made the trip. When he returned, even more poor people were lining up to sell organs. The price paid for a kidney had dropped to just US$1,000.
Just as suddenly as it began, the kidney express derailed. In early November 2003, on a tip from a dissatisfied Brazilian seller, South African police set up a sting operation at St. Augustine’s Hospital, trapping a paid donor and his Israeli recipient, a middle-aged father. By late November, 14 people had been arrested in parallel police operations in Durban and Recife. More arrests followed in 2004. Those detained, arrested, and convicted included brokers, surgeons, nephrologists, technicians, insurance agents, two kidney buyers (to serve as state witnesses) and more than a dozen Brazilian sellers, among them Alberty.
“Look how they lied,” said Captain Louis Helberg, head of the South African police’s Commercial Crime Unit and head of the sting operation. Helberg and his team of Afrikaner and Zulu cops stormed St. Augustine’s Hospital and confiscated all medical records from the private transplant clinic rented by Netcare, South Africa’s largest HMO. They also raided the South African Blood Service, carrying off the blood and records used to facilitate the illegal transplants. Going over the records in February 2004, Captain Helberg read incredulously: “August 1, 2003. Recipient: ‘Lucille Hubbard’ (New York City), age 48. Donor: Alberty Alfonso da Silva (Recife, Brazil), age 38. Living related donor.”
“Do you think the transplant surgeons really believed that a poor Brazilian was related to a wealthy New Yorker?” he asked. “These doctors turned everyone into family members—one big, sick, unhappy family,” he said disgustedly. “I won’t rest until every last one of the surgeons, nephrologists, nurses, transplant coordinators, translators, insurance company managers, HMO administrators and their international brokers are arrested and charged with organized crime.”
In August 2005, four South African transplant surgeons and several associates were charged with “fraud, assault with intent to do grievous bodily harm, and contravening the Human Tissues Act.” Their trial takes place in early 2006.
The Lasting Effects
Sitting on a broken stool in his shack, Alberty was philosophical. The police could not confiscate his money—there wasn’t any left. Two ex-girlfriends, the mothers of his children, made off with a large chunk of it, and with what remained Alberty bought a used car to look for work. When he couldn’t make his monthly payments, Alberty traded the car for an old jalopy, which promptly broke down and was traded for a secondhand bicycle. The bicycle and a pair of running shoes are all Alberty has to show for the transplant—except for a huge, saber-like scar across his mid-section.
“I’d like to apologize,” Alberty said, “but I don’t know for what. I didn’t even know it was a big crime to sell something that belonged to you.” Alberty hoped to go to New York, where Lucille, his “wealthy patroa,” might save him.
Alberty dictated a letter to Lucille, which I transcribed and translated. I promised to deliver it to his kidney kin:
I hope that you are happy and safe among your family. I am here rooting for your happiness...I am trying to get out of these present difficulties as best as I can…I hope that one day we will see each other again now that we are one. I miss you and when I see you again we will share a meal together. I will never forget the short time we spent together. If I had it to do all over again I would do it. I believe that by the grace of God I will be reunited with you. We will blow out the torch of the statue of liberty together. We will walk hand in hand through the forest of Central Park like two children without a care in the world.
May God be with you and may you have health and peace for you and your husband.
Please write back to me .
Alberty Jose da Silva
Lucille was happy to lean that Alberty was safe and not in jail. “I pray for him every day,” she said.
On my return to Recife in July 2005, I found Alberty looking fit and jaunty. But as soon as we ducked inside the lobby of a hotel for a cafezinho, his devil-may-care composure splintered. “Did Lucille send me anything?” he asked anxiously. When I broke the news about Lucille’s fragile economic and medical circumstances, he nodded his head sadly. Things were not going so well for him: he lost his bid for election as a local representative of his slum, due to what he described as a “lack of respect.” The Recife kidney sellers are stigmatized as “mutilados.” Even the children of his slum taunt: “Alberty, where’s your cars? Where’s your kidney?” I invited Alberty to join a dozen angry kidney sellers, caught up in the same transatlantic trafficking scheme, who sought to organize an Association of Disillusioned Organ Donors.
At their first meeting, the “disillusioned sellers” aired many complaints: loss of work, income, strength, and social standing. They blamed their kidney removals for chronic pain, weakness, anxiety and depression, family discord, and social rejection. Geremias lost his job as a teacher and was diagnosed with kidney stones. Paulo, a house painter, lost half of his clients; they shunned him for selling a valuable part of himself. Ernani’s wife left him, saying he was no longer vigorous or “potent” since “giving away” his kidney.
“They treated me okay,” Geremias said, “until they got what they wanted. Then I was thrown away like garbage.”
The End of the Body
The organs market obviously throws into question the assumptions and values that have traditionally guided transplant medicine: human dignity, bodily integrity, and the body as an exception. Immanuel Kant proposed that the body and its organs occupy a special status because it is through the experience of the body that one can be said to have a human existence at all. The body, in existential terms, is the very grounds of human life—embodied, therefore I am.
Peasants and urban workers in northeast Brazil put it more simply when they say: “Eu sou meu corpo!”—I am my body. Paulo, a disillusioned seller, said he forgave himself because he didn’t know how attached he really was to the “little thing” until it was gone and announced its absence as a constant itching at the site of his wound. “I have learned one thing,” Paulo said. “Even though I have two of them, I will never sell one of my hands.”