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Our Bodies Belong to God
Organ Transplants, Islam, and the Struggle for Human Dignity in Egypt
By Sherine Hamdy UNIVERSITY OF CALIFORNIA PRESS
Copyright © 2012 The Regents of the University of California
All rights reserved.
ISBN: 978-0-520-95174-7
CHAPTER 1
Egypt's Crises of Authority
When Egyptian doctors first experimented with kidney transplantation in the 1970s, the wider public had no idea that the number of patients in kidney failure was ominously rising or that this life-restoring surgery would soon become the object of a contentious debate. By the 1990s, investigative reporters for newspapers and local television channels fully exposed the gory and often scandalous details about the transplantation of kidneys, eyes, and other body parts. Doctors, legislators, journalists, and religious figures all argued and debated vehemently about the ethics of procuring and transplanting parts of the human body, with seemingly no resolution. During this span of decades, Egypt's social landscape was dramatically transformed. Significant social changes included the sharp rise in first-generation literates, the massive rural to urban migration, the nation's huge population growth, the diversification of media outlets that exceeded the mandates of the government, the dismantling of the welfare state, the explosion in number of Egyptian migrants seeking work in the newly petro-rich Gulf region, and the Islamic revival across the Arab world that resulted in the increased dominance of religious discourse in daily life. These changes led, among other things, to less perceived social distance between physician and patient and between religious scholar and lay Muslim. In contrast with earlier generations, poor disenfranchised patients actively contested medical practice, and informally educated lay Muslims engaged in religious interpretation themselves. Subsequent crises of authority in both the medical and religious realms resulted in a continuing unresolved debate over organ transplantation, a practice which provoked the reassessment of ideas of personhood, the meanings of death, and questions about the proper treatment of the human body.
This chapter introduces pioneering surgeons, terminally ill kidney-failure patients, patients blinded by cornea opacity, their ambivalent doctors, and religious scholars. Within each of these groups, ideas and arguments are in constant flux. Amid an increasing gap between minimal public services and high-cost, high-tech private clinics, Egypt's medical professionals disagree on how best to practice medicine. Egyptian physicians see medical knowledge as universal, yet also struggle to adapt it to local circumstances. Egypt's religious world is increasingly fractious, marked by state-appointed religious scholars and their critics, who challenge both medical authority and the state's aims, often through newly decentralized media outlets. Ideas about the dead body, human suffering, and divine will are embedded in longstanding theological debates. Meanwhile, since the 1970s, Egypt's political economy has been undergoing the demise of social welfare and the rise of neoliberal policies that have exacerbated the gap between rich and poor (Mitchell 2002). All of these changes have occurred amid a newly articulated Islamic ethic that calls for social justice, yet one that operates within the context of a political regime that has long presented itself as Western-aligned and democratic while practicing brutal intolerance toward dissenters (Ibrahim 1996; Kienle 2001; Wickham 2002; Mahmood 2005; Hirschkind 2006; Rutherford 2008; EIPR 2009).
In this shifting social reality, biotechnologies and new global markets impinge on notions of bodily integrity. And in the fractious realms of religious and medical ethics, patients, religious scholars, and doctors have found themselves faced with questions about life and death with no firm ground to stand upon. Meanwhile, the biotechnology of organ transplantation itself is quickly evolving. The introduction of new surgical techniques, newer generations of pharmaceutical immunosuppressive drugs, and growing clinical experience all contribute to changing rates of efficacy and survival. In this chapter I explore the ways in which various people have engaged with these slippery, moving targets.
BEGINNINGS
In the late 1960s, when the first two dialysis machines were brought to Mansoura, a provincial city on the eastern branch of the Nile Delta, Dr. Mohamed Ghoneim, a young urological surgeon, insisted that they be located in the department of urology rather than the department of internal medicine. His colleagues at the hospital were both baffled and annoyed. Ghoneim did not see the primitive dialysis machines as stations for the life-support of terminally ill end-stage kidney disease patients. Rather, he foresaw them as providing intermittent treatment for patients whom he would eventually treat surgically with kidney transplantation. He planned to carry out this procedure in what he envisioned would be Egypt's first center for treating kidney disease in Mansoura.
Mansoura? The town was so provincial that scarcely a generation earlier any medical practitioner with even a modicum of ambition would have left it to train and practice in Cairo. And even Cairo did not yet have the capabilities for kidney transplantation, a procedure that was still at an experimental stage worldwide. In the United States, where the first experiments were carried out, the failure and death rates of these operations were exceedingly high.
None of this was to stop Ghoneim. With a streak of anti-elitism that marked him as one of Egypt's most beloved medical heroes, Ghoneim famously sneered, "Where else would we do it? In Zamalek?" Zamalek is one of Cairo's most exclusive neighborhoods—an island in the middle of the Nile and home to the old-guard elite, five-star hotels, and foreigners. Referring to the high incidence of parasitic schistosomiasis infections among the poor rural inhabitants of the Nile Delta provinces, and hence their susceptibility to kidney and urological diseases, Ghoneim's pronouncement about Mansoura was swift: "Mansoura is the center of the battlefield!"
And, indeed, in 1976, when a mother in Mansoura donated one of her kidneys to her daughter, Dr. Ghoneim carried out the first kidney transplant operation in Egypt. Ghoneim was not interested in merely bringing Egypt up to pace with this biotechnological accomplishment. He envisioned bringing its benefits to Egypt's rural impoverished patients. Ghoneim began with a limited capacity of two dialysis machines and one hospital bed for transplantation at Mansoura University Hospital; in time, he and his colleagues established an internationally renowned national and public institution for the treatment of kidney and urological diseases in Mansoura. The building was erected on the grounds of a famous botanical garden with the help of funds from the Netherlands under then-president Sadat. Thereafter, the beautifully landscaped and curated institution was sustained by government support and local donations. The Mansoura Kidney Center, formally established in 1983, today provides tertiary health care for a population base of seven million. Kidney-failure patients with family members who are willing and medically eligible to donate a kidney can access a transplant, a life-long regimen of immunosuppressants, and follow-up medical care at no cost. Under Ghoneim's strict protocols and his watchful eye, the physicians at Mansoura painstakingly raised the level of nursing and clinical care and carefully screened donors and recipients to ensure the highest success rates. At this center, transplants have all depended on living donors, and after thirty years of experience, the patient and kidney graft survival rates rival those in the best centers in countries with far greater resources, including equipment, staff, and newer immunosuppressants. The center's capacity for transplantation has grown over the years, and since 2008, it has carried out approximately eighty kidney transplants annually.
Cairo's hospitals and private clinics began to carry out transplantation shortly after Mansoura's early experiments. Various medical facilities in Cairo soon dwarfed Mansoura's capacity, carrying out (often unrecorded) operations that were impossible to quantify accurately. During this second decade of transplantation, stories of the black market and theft of kidneys in Cairo began to circulate in Egypt. By the mid-1980s disturbing reports about a thriving market in human kidneys in Cairo hospitals continually appeared in Egyptian newspapers, both the state-owned dailies and, in more provocative tones, in the opposition-party news. Evidence of blatant medical misconduct, including graphic images of people with large, protruding surgical scars, and allegations of organ theft fueled popular resentment against government corruption and the mismanagement of state medical institutions. Criticism immediately spilled into religious and moral discourse about what can rightly be done to the human body as God's creation.
In this period, critics of state institutions increasingly framed their moral discontent with the government in what they considered to be "Islamic" terms. Professionals, including medical physicians, many of whom were members of the Muslim Brotherhood that came to dominate the Egyptian Medical Syndicate in the 1980s, called for a return to religious ideals. While it might have been clear to Dr. Ghoneim of Mansoura in the mid-1970s that the primary battle to be fought was against disease, particularly that which is wrought by endemic parasitic infection among the rural poor, rural disease was much less the priority of elite physicians a decade later and is still less of a priority today. In the first decade and a half of transplant medicine, many Egyptian doctors began to identify other battles to be waged: against the privatization of health care, the commodification of bodies, rampant corruption, government irresponsibility, and godlessness. Who can patients trust, given the ample restrictions on political freedoms, the strained relations between religious and state authorities, and the fact that there has been no tradition of patients' rights and no elaborate system of consent procurement?
ON DIALYSIS, IN THE WASH
Ragia lay on a narrow bed tethered to her dialysis machine. She was now completely blind as a result of her diabetes, which had also devastated her kidneys. Anticipating meeting her again, I walked hesitantly down the hall of the public hospital in the Nile Delta city of Tanta and then fidgeted nervously at the entryway of the dimly lit hospital room. The overhead fluorescent lights flickered arhythmically, and the smell of disinfectant mixed with the human blood moving between the dialysis machines and the patients, was overpowering. The sounds of periodic beeps and swishes of the dialysis machines rarely, if ever, synchronized with the patients' restless movements. The patients lay in rows, each hooked up to a machine.
The Egyptian colloquial word for dialysis is ghasil-kalawy (kidney washing) or ghasil al-damm (washing blood). Ghasil, in everyday parlance, means "laundry." Patients referring to their dialysis sessions said that they came to "wash" or that the doctors "washed" them. When I first met Salih, a forty-year old army retiree whose wife accompanied him on the two-hour trip from their rural village to the dialysis unit, his wife, unaccustomed to hearing the city dialect, asked me to repeat everything I said a number of times. Salih affectionately nudged his wife and joked, "It's true that I need to do washing [i.e., dialysis, ghasil], but I think she needs ear washing [ghasil al-widan]!"A younger patient, Ahmad, told me, amusedly, that his children at home learned that their father did "washing" at the hospital and that their mother did the washing at home. As the patients were well aware, the dialysis sessions did not treat their kidney disease or restore their kidney function. Dialysis, a life-sustaining treatment, keeps the diagnosis of end-stage kidney failure from being a death sentence by filtering the toxins in blood that malfunctioning kidneys fail to remove.
As many patients conceived of it, "Food makes blood, and then kidneys clean the blood." Now that their kidneys had failed, machines washed their blood instead. Their toxin levels, they believed, were high not only because of their failed kidneys but also because of their toxic environment. No matter how much washing occurred, their vitality could never be fully restored, because, as they pointed out, the food and water that remade their blood were polluted, just as the blood transfusions they needed might be contaminated. Further, many patients realized that the more time they spent on dialysis, the sicker they were getting, and the less they would benefit from a kidney transplant. As one patient put it, "You wash and wash [undergo dialysis], and just like when you wash your galabiyya and it gets frayed and threadbare, the same with the body, it gets worn out from so much washing."
Conscious that they were reliant on dialysis machines for their very survival, patients were also cognizant of their vulnerability to the machines' shortcomings. The dialysis sessions required humans—underpaid and often unreliable—to check, carry, transport, clean, and operate the machines. And dialysis machines relied on hospital and state infrastructure for electric power. In the Egyptian delta provinces of Gharbiyya and elsewhere, patients were vulnerable to the state's irregular power supply and to regular blackouts. Even more frustrating were the more frequent brownouts, periods when the voltage dropped low, threatening the operation of the machines' microprocessing units. The dialysis machines would often let out sharp beeps in response to the drops in voltage. The patients would lift their heavy heads in alarm; the fuzzy picture on a black-and-white television set, which at times emanated melodious Qur'anic recitation and at other times depicted images of war in Iraq, would switch to static. The nurses would run to the dialysis machines and punch buttons until the beeping stopped.
Trying to brace myself for what I might find inside, I had come to the habit of beginning my work in the dialysis unit by counting whose shoes were lying outside the door, trying to anticipate who might be missing by yet another death. Catching sight of Ragia's shoes, then Ragia, I walked in and took my place by her side. I opened my notebook, and she began to speak.
Ragia told me with tears streaming down her face that more painful than the dialysis was the fact that, after years of living in blindness, she had forgotten the face of her seven-year-old daughter. Her husband, at her side, consoled her, saying that he would give her his kidney, and even his eyes, to see her not suffer. They did not have the same blood type, though, foreclosing the possibility of a transplant. Ragia said that in any case she could not bear to see him undergo a major operation for her and that they needed to save all of their resources to focus on their only daughter, who was recently diagnosed with the same diabetes afflicting her mother.
Unlike Ragia, most patients in the public hospital dialysis ward in Tanta did not have family members readily offering them pieces of their bodies. Most of Egypt's poor could not afford to consider transplantation as a possibility. In any case, many patients were not convinced that a transplant would result in more benefit than harm—considering the financial costs, the sacrifice of the kidney donor, and how their lives might or might not turn out posttransplant. They continued to endure difficult and, at times, unreliable treatment and to manage the symptoms of chronic kidney failure and the side effects of medications and hemodialysis, including dietary restrictions and unpredictable episodes of sharp pain, dizziness, weakness, nausea, muscle cramps, and fatigue.
Another young woman, Muna, also fidgeted restlessly in her bed. She, too, had a young daughter to care for. Her husband, tiring of the expenses of dialysis treatment and Muna's inability to conceive and give birth to a son, had left her, a fate not uncommon to women on dialysis. And she had tried—against her doctor's warnings—to bear another child, but the strain of the pregnancy resulted in a miscarriage, worsening her kidney function and precipitating the dissolution of her marriage. In a tired and hoarse whisper, she explained to me that there was no one who would gift her a kidney. "Anyway," she sighed, "one cannot give a part of the body away, since the whole body belongs to God." Then she straightened and forced a smile, telling me that advances in science happened every day. "Soon doctors may be able to clone a kidney from [my own] cells." Pointing to the tubes connecting her frail arms to the bright blue dialysis machine, she said, "I'll be honest with you. It is this hope that keeps me going. It is this hope that brings me here each day."
(Continues...)
Excerpted from Our Bodies Belong to God by Sherine Hamdy. Copyright © 2012 The Regents of the University of California. Excerpted by permission of UNIVERSITY OF CALIFORNIA PRESS.
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