His operation went smoothly. Six days later, it was my turn. I remember visiting the doctor shortly before the transplant, feeling the pinprick and stinging flush of local anesthetic, then a blunted tugging, the nauseating and strange sensation of a dialysis catheter withdrawn from below my collarbone. I remember, later, the tranquil fog of midazolam as I was rolled to the OR. I remember waking from great depths after surgery under bright lights and shivering violently, then falling back asleep. I remember lying naked under blankets in the ICU, mildly delirious from morphine while watching a movie about a plane crash in the Alaskan wilderness, with Anthony Hopkins and Alec Baldwin fleeing a giant grizzly bear. I remember friends visiting me on the recovery floor, and how it hurt to laugh. But now that 24 years have passed, all in relatively good health, I can recognize how much I’ve forgotten. I forget the short leash of dialysis from the months before my transplant: those oversize recliners deep inside the taupe core of a hospital building where, three times a week, machines drained and recycled my blood. I forget the plainness of a low-potassium, low-phosphorus, low-salt diet. I forget how bizarre it is that a few pills in the morning and a few at night keep the foreign organ in my lower abdomen alive—keep me alive. I, regrettably, lose sight of the supreme gift I’ve been given, this indefinite allowance of extra time, while 90,000 other Americans wait for this same gift, often on dialysis for years. Roughly 4 percent will die every year still waiting, and another 4 percent will become too sick to undergo major surgery. But here I am, forgetting this grace. Five years ago, my brother’s kidney began to fail, and all of these buried memories resurfaced. His blood tests returned erratic levels, and nephrologists fretted. He was in and out of the hospital with recurring viral infections. A biopsy revealed necrotic tissue perforating half his kidney, webbed throughout like the tunnels of an ant colony. Finally, in May of 2018, he sent an email to family and friends, distilling the two borrowed decades during which he had attended concerts, hiked the Pacific Northwest, fallen in love, gotten married, started a family. All of these details were offered with a kind of chummy lightheartedness, but, as every reader knew, they barreled toward the inevitable and awkward conclusion. He was 37 years old and back in the hunt for a kidney. Would you be so kind as to consider … ? The first successful kidney transplant took place in Boston in 1954 between a deliriously ill Richard Herrick and his identical twin brother, Ronald. Eight years later, his new kidney still doing its job, Richard died of a heart attack. Scattered attempts had come before then. In Ukraine, in 1933, the kidney of a 60-year-old man with type B blood who’d been dead for six hours was transplanted into a 26-year-old woman with type O blood who’d lost kidney function after poisoning herself. The recipient survived for two more days, which is miraculous considering the technology, circumstances, and general knowledge at the time. A transplant recipient in Chicago, in 1950, had some additional kidney function for a few months. Paris became a hotbed of experimentation in the early ’50s. Then came the Herricks. Their story was technically dazzling but left unsolved the central biological puzzle of transplantation: how to tame the immune system. In most cases, our bodies recognize foreign tissue and send a battery of B and T cells to kill it. As identical twins with identical-enough tissue types, the Herricks sidestepped this problem. But doctors would need a solution to our innate immune response if kidney transplants were ever to become a mainstream procedure. Early efforts subjected patients to full-body preoperative blasts of X-ray radiation at borderline-lethal doses. The intent was to crush the immune system, then let it rebuild with the new kidney in place. This was sometimes accompanied by an injection of bone marrow. Most patients died from organ rejection, graft-versus-host disease, or both. The field of transplant surgery grew insular and desperate. Citing the fundamental precept of avoiding unnecessary harm, the more conservative medical practitioners of the day vilified the practice. Around this time, one detractor wondered, “When will our colleagues give up this game of experimenting on human beings? And when will they realize that dying, too, can be a mercy?” The trick was mixing the steroid prednisone with azathioprine, a recently discovered leukemia drug that interferes with cell division. By combining these two pharmaceuticals and starting the regimen a few weeks prior to surgery, patients’ bodies more willingly accepted a transplanted kidney. Rejection was treated with high doses of prednisone. “The genie appeared to be out of the bottle,” a prominent transplant doctor later wrote. The year after Starzl and Marchioro’s discovery, the number of medical centers offering kidney transplants grew many times over. But from the outset, demand far exceeded supply. In 1967, one study found that roughly 8,000 people were eligible for a kidney transplant; only 300 received one. It took about a decade for someone of enterprising disposition to step into this gap. H. Barry Jacobs was a Virginia doctor who lost his license to practice medicine in 1977 for attempting to defraud Medicare. He spent 10 months in jail and shortly after his release turned his energies to the unregulated business of organ brokering. His company, International Kidney Exchange Ltd., was built around the fact that most of us are born with two kidneys but can function with one. If one kidney is removed, the other grows larger and works harder, filtering more blood to cover as best it can for its emigrant twin. This redundancy supported Jacobs’ straightforward business model. He would connect people who wanted to sell one of their kidneys, for a price of their choosing, with people who needed one. As a middleman, Jacobs would charge a brokerage fee to the recipients. At the time, Al Gore, then a member of the US House of Representatives, was developing the National Organ Transplant Act, which centered on establishing a repository to match organ donors with those in need of a transplant. Upon hearing of Jacobs’ plan, Gore also took up the question of compensation. Jacobs appeared before the Subcommittee on Health and the Environment on October 17, 1983, and spoke with truculence. He talked about one doctor who had testified before him “sitting on his butt” and failing to seriously address the problem of organ shortages. He interrupted and challenged his questioners. His testimony, above all, highlighted the likely abuses in an unregulated organ market. “I have heard you talk about going to South America and Africa, to third-world countries, and paying poor people overseas to take trips to the United States to undergo surgery and have a kidney removed for use in this country,” Gore said. “That is part of your plan, isn’t it?” Gore: “You had said also in the past that the payment would vary depending upon the individual involved.” “It is up to them to decide,” Jacobs answered. “And that some of these potential donors probably wouldn’t ask very much because they would get a chance to see America,” Gore pressed. “What their motivation is is up to them.” “They might be willing to give you a cut-rate price just for the chance to see the Statue of Liberty or the Capitol or something.” Jacobs held the line: “What their motivation is is not important.” Gore’s questioning revealed that International Kidney Exchange, Ltd. would sometimes trawl for kidneys among the world’s poorest, then charge a commission to recipients paying for their lives. When the National Organ Transplant Act passed in 1984, it declared the sale or barter of organs used in transplant to be illegal. This exchange gave public force to a debate that had been unfolding in the dimmer theater of academia ever since transplantation first became possible. UCLA law professor Jesse Dukeminier Jr. took up the organ-market question in 1970. (He called attention to a 1968 classified ad in Los Angeles: “Man will sell any portion of body for financial remuneration.”) Proponents of an organ market had historically invoked the crisp—some say cold—logic of utilitarianism. A properly designed market, they suggested, would provide economic surplus to both the organ donor, in the form of money, and to the recipient, in the form of a longer, healthier life. Opponents of a market typically crafted their dissents from the gossamer realm of ethics. What does it say about us, as humans, if the temple of our body can be auctioned off for parts? Are we comfortable living in a society where the poor are compelled to sell their kidneys in exchange for the necessities of life? For decades, these two camps have quarreled, and they continue to do so today. Meanwhile, little progress has been made in addressing the kidney shortage. Almost 40 years after the National Organ Transplant Act passed, the prohibition against the sale of organs remains in place. As I read my brother’s message, I wondered how soon the kidney my dad gave to me—now 72 years old—would begin to falter. Months? Years? And asking my brother and his wife about their progress seeking a donor got me thinking: Given that so many people are waiting for kidneys and so many are dying as they wait, could a market work in the US? Barring the most fanatical capitalists and libertarians, nobody in the US supports a private exchange for kidneys, one in which negotiations occur between two individuals with no oversight. Instead, proponents of a kidney market—like Sally Satel of the libertarian American Enterprise Institute; Arthur Matas, a professor of surgery at the University of Minnesota; and Michele Goodwin, a law professor at the University of California, Irvine—envision something tightly regulated. Economists and ethicists, lawyers and doctors have all put forth proposals, and each converges on a few key points. The market would be monopsonistic, meaning there would be a single buyer for the kidneys, likely the federal government through Medicare. Prearranged contracts would cover cadaveric kidney donation—if your kidney were donated after your death, your family would be rewarded. More controversially, living donors would also be compensated. People debate what form compensation should take for living donors. A lump sum of cash raises the most eyebrows. Cash disbursed over many years is another possibility. It could also be something less direct, like a college fund, student loan forgiveness, a retirement fund, or free health insurance for life. It could be some combination of these things or some combination of other things. Regardless of what form compensation takes, though, most proponents agree that it should be a fixed quantity managed by the federal government. There would be no haggling from either donors or recipients. Once the kidney was secured, the rest of the process would play out as it does with cadaveric donation, which is to say a local organ procurement organization overseen by the federally funded United Network for Organ Sharing would go about its business of finding the most suitable match, and the surgeries would unfold behind a veil of anonymity. Financing such a market would not be a stretch for the federal government, which has been involved in kidney transplants since President Nixon signed the Social Security Amendments of 1972, installing Medicare as the primary insurer for anybody in need of dialysis or a transplant. Since its launch, the end-stage renal disease program has saved and extended hundreds of thousands of lives, but at significant cost. Today, despite making up less than 1 percent of Medicare’s users, patients with end-stage renal disease account for roughly 7 percent of Medicare’s spending and roughly 1 percent of the entire federal budget. The vast majority of this group is on dialysis. Opponents of a kidney market look elsewhere for counterpoints, and there are several. Iran is the only country that runs a partially regulated market for kidneys, one that is successful by some measures and troubling by others. Though the Iranian government fixes the price for donated kidneys, the actual payment takes place between two individuals. As a result, donors often hire brokers to squeeze more money out of the exchange. Exploitation is another concern among those who oppose a market. Organ sales present a stark and literal embodiment of inequality. (Not to mention the government’s deplorable track record with medical experiments that are inherently exploitative, like the US Public Health Service’s syphilis study in Macon County, Alabama.) But the exploitative potential of markets doesn’t vanish just because they’ve been declared illegal. The World Health Organization estimates that up to 10 percent of transplant organs are procured on the black market. A 2021 investigation by The New York Times described Afghanistan’s illicit, but open, trade in kidneys as “a portal to new misery for the country’s most vulnerable.” Markets like this, which exist around the world, are supported by transplant tourists who fly overseas to purchase a kidney. Legal compensation in the US wouldn’t stamp out the global black market, but it could curtail it by increasing domestic supply. Beneath these pragmatic concerns, though, is often a more fundamental aversion to the commodification of organs, one that rests on the belief that our body should remain above the market’s grubby reach. “Human organs should not be treated like fenders in an auto junkyard,” US representative Henry Waxman said shortly after Jacobs’ testimony. A report from the Department of Health and Human Services three years later reinforced the idea: “Society’s moral values militate against regarding the body as a commodity.” This is a viscerally compelling point. I, admittedly, would once have found the commodification of kidneys objectionable. I tend to distrust the use of markets as tools for solving morally messy problems, and so I am surprised to find myself defending the idea. But my brother’s ordeal nudged me toward this perspective: It’s easy to endorse a policy that benefits you and those you love. What’s more, frequent exposure to the world of medicine disabused me of ideas I once held about the human body enshrining some magic core. All the palpations, the proddings and pokings, the intrusions, the needles and plastic sample cups and bandages and alienating vocabulary, the doctors talking to you as if you’re half there or to each other as if you’re not there at all. On some level, we’re just finely wired machines to be fixed. The final report described my disease with such fineness of detail that I felt mildly dizzy. More than 500 mutations have been associated with the kind of Alport I have, but mine is found on exon 7 of the COL4A5 gene, which is found on the long arm of the X chromosome, somewhere around the 108-millionth base pair. Rather than a “GGT” in the DNA, which creates glycine, my mom and my brother and I have a “GAT,” which creates aspartic acid. A single misspelled genetic base, and the COL4A5 gene starts contributing faulty proteins that mass together with normal proteins to form, in my case, inoperative type-IV collagen. This in turn leads to defective tissue of particular importance in the function of the eyes, cochlea, and kidneys. That’s the glitch in the software. A single letter switched out means my lenses are misshapen, my hearing is bad and destined to get worse, and my kidneys are doomed. It was an uncanny revelation to see my defect in microscopic reflection, to glimpse the intricate mechanics of such a complex machine. Marvelous, yes, but a machine. If one of my sons had the mutation I have, and if the technology existed to simply replace the dysfunctional GAT with a GGT, I would pay to have it done. Just as I would pay a junkyard to replace my broken fender. With all due respect to Representative Waxman, we’re just a bunch of parts. The shortage of donor kidneys is not an exclusively American problem. In Europe, for instance, a 2021 report found that somewhere between 15 and 30 percent of patients die waiting for an organ transplant, many of them in need of a kidney. And so the search for solutions is not an American search. Spain is considered an international leader in its efforts to procure cadaver organs; still, there are more people in need of transplants than there are available kidneys. The US has promoted “expanded criteria” in recent years, meaning transplant centers now accept and use kidneys that were once considered too unhealthy or old. Debates rage over the value of an opt-out system, in which consent is presumed, as opposed to opt-in, in which one must provide consent to donate. Policymakers are proposing marginal tweaks that offer a sliver of gains, and still, people are dying. An Iranian nonprofit manages the whole process, from matching donors with recipients to holding payment in escrow and releasing it after the operation. In addition to a period of free health insurance, donors receive a fixed reward set by a government foundation and, according to one 2019 study, equivalent to less than two years of minimum wage. Recipients are expected to pay this expense, and charities often step in if they cannot. Transplants take place at university hospitals, and the government generally pays for both operations. The system is not perfect. Reports abound of brokers hired to negotiate higher prices on the sidelines of the official process. Newspapers have covered indebted students and parents placing flyers with their phone number across the street from transplant centers. Poor people—no surprise—give kidneys more often than rich people. A 2020 study found that 78 percent of donors were from households earning less than the median. A 2006 study found that 16 percent were middle class, and only about 6 percent had a college education. That same study, though, noted that 50 percent of recipients were poor. Also notable: There is now a waitlist to be a donor, and so roughly 50 percent of transplanted kidneys in Iran come from living donors, according to the Associated Press. The vast majority are unrelated to the recipient. These kidneys match better and last longer on average than do kidneys from deceased donors. They are also, in most countries, much harder to come by. In the US in 2022, living donors were responsible for just under a third of transplants, a fraction of which come from strangers. We live with the very persuasive illusion that our lives are self-directed, that we’ve mapped out and are navigating every step of a lengthy narrative. Think strategically, move carefully, don’t backtrack, reach goals. But moments like this one, watching my brother and his family fogged-in with so much uncertainty, grappling with life’s uncaring caprice, dispatch this comfortable misreading of the world. When will his kidney give out? Who, if anyone, will consider his request? Who will reach out to the transplant coordinator? Will there be a match? Will he need to go on the list for a cadaveric kidney? Will he live? His wife kept track of who had offered to donate and where they were in the process of testing. My brother tried not to think about these wheels turning and, being eternally pessimistic—“realistic,” he says—set his expectations to start on dialysis six or 12 months in the future. He started mentally planning around “the crappy reality of that with two young kids and a job and all that.” Not long after sending the email, he spoke with an old friend from high school who is a father of two, an upstanding person, who told my brother that, upon reading the message, he realized that he is too much of a coward to give a kidney, despite the rational and loving part of him wanting to. My brother knew he was imposing this same fraught pressure on people near and far in relational orbits. “It felt like I was announcing that I am so important to everyone I know that they should be lining up to undergo major surgery on my behalf.” Another of my brother’s friends ultimately volunteered. Her decision was not out of character; she is a listed marrow donor. But as the mother of two young children, it could not have been an easy decision. I wondered why she was doing it. She told me it was because she “really felt for” my brother. Were there hidden strands of obligation tied up in those three simple words, a sense that friends should do things, even big things like this, for each other? Did cowardice feel to her like an inadequate excuse, like an indictment? Were there deeper provocations connected, abstractedly, to the fact that she had lost her father as a girl, and now placed before her was some fated replay where she could rewrite the outcome, save somebody else’s father? To echo H. Barry Jacobs, her motivation was her own—clear in some ways, opaque in others. I’m grateful for what she did. To me, the reason is irrelevant. Nor do opponents speak with precision about how much risk the removal of a kidney entails. Loggers die at several times the rate of kidney donors. The risk of mortality from kidney donation is only slightly higher than that from giving birth in the United States, although this statistic says as much about the failures of US maternal health care as it does about kidney removal. There are potentially simple ways to confront the most fundamental concerns of exploitation. The informed consent process could require a waiting period of six months or more to assure people don’t sell their kidney in hasty desperation. Similarly, compensation needn’t be a one-time lump sum—it needn’t even be money—and playing with these possibilities could affect both how people consider the risks and the demographic spread of donors. Cartwright, for instance, has asked whether compensation in the form of lifelong health insurance or student loan forgiveness might make people weigh the drawbacks of surgery more carefully. Would it pull more equitably from the middle and upper classes? The Organ Procurement and Transplantation network already provides donors with a golden ticket: If their remaining kidney starts to fail, they jump to the front of the queue for a new one. While it could be the case that the poor would be disproportionately represented among donors, as Iran’s market suggests, they would also stand to gain disproportionately as recipients. Poverty is associated with higher rates of end-stage renal disease, and transplant numbers are, like most things, tied to race. One survey found that, after being placed on the waiting list, white patients were about twice as likely as Asian and Hispanic patients and four times as likely as Black patients to receive a living kidney donation in 2014. My brother was lucky. He didn’t need to take a spot at the end of the line of those waiting for a deceased donor. His friend underwent a battery of physical and psychological tests and proved a good match. She went forward with the support of her husband, the semi-support of her mother, and the fuzzy understanding of her young children, who were given kids’ books on anatomy. When Covid-19 canceled all elective surgeries—a classification that includes kidney transplantation, given the fallback of dialysis—my brother and his donor settled into a precarious holding pattern. For three years, failing health had subtly transformed him, a feeling you know if you’ve suffered chronic illness, the way it blights your relationship with the world around you. He watched the borders of his life constrict. There was anger, resentment. When we are sick, wrote Virginia Woolf, “we go down into the pit of death and feel the waters of annihilation close above our heads.” Finally, in July of 2020, the surgery went ahead. My brother took two showers with antibiotic soap the morning of the operation, one a little after midnight, the next at about 6 am. His wife met him shortly after the second shower, and by 7:30, an orderly was carting him down a long series of corridors and elevators to pre-op, where an anesthesiologist offered him a drug cocktail to calm his nerves—“a glass of wine,” she said. He took her up on the offer, felt lightheaded, and then was wheeled farther down another corridor into the operating room. He stepped from the gurney to the operating table. The surgeon was in the corner going through his checklist. There was a short period of waiting, men and women in scrubs and gowns busily at work, the choreography of this mundane miracle unfolding around him. They gave him fentanyl intravenously, and it burned as it ran up his arm until he was asleep. He recovered swiftly, and so did the donor. “I woke up later and felt super weird,” she told me of her postoperative experience. She was walking within a day, back home within two. She ultimately received a few thousand dollars from my brother and his wife. They had budgeted this money to cover some combination of travel and hotel expenses and lost wages. That framing gave the exchange a practical foundation, but the money, to the extent it can, also signaled an inexpressible depth of gratitude. On a recent long weekend, while grandparents watched my brother’s two kids, he and his wife spent three days together in the wilderness, hiking and camping to celebrate the milestone of his 40th birthday and the return to a world uninflected by the weight of illness. They were back to normal—a euphemism for the completely unexpected. He is, in a way, still waiting on the generosity of friends and family and strangers, as am I. But his clock has been reset. It will keep its own time. My bell will ring soon, I know, and I will join the crowd on the other side of the ledger, all of us applying friendly pressure to people we know and those we sort of know, pleading, waiting and jostling and clamoring together, assuming, each of us separately, because we must, that we won’t be one of the roughly 4,000 Americans who dies each year for lack of a kidney. It needn’t be such a big number. Let us know what you think about this article. Submit a letter to the editor at mail@wired.com.
