Each year thousands die because there aren’t enough organs for transplants, and I may be one of them. It’s time to start compensating donors.
WHEN WE WERE teenagers, my brother and I received kidney transplants six days apart. It wasn’t supposed to be that way. He, two years older, was scheduled to receive my dad’s kidney in April of 1998. Twenty-four hours before the surgery, the transplant team performed its final blood panel and discovered a tissue incompatibility that all the previous testing had somehow missed. My brother was pushed onto “the list,” where he’d wait, who knows how long, for the kidney of somebody who had died and possessed the generous foresight to be a donor after death. I was next in line for my dad’s kidney. We matched, and the date was set for August 28. Then my parents got a call early in the morning on August 22. There had been a car crash. A kidney was available. As with many things in life, my brother went first and I followed.
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stinging flush of local anesthetic, then a blunted tugging, the nauseating and strange sensation of a dialysis catheter withdrawn from below my collarbone.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?”
In 1963, the world’s preeminent kidney transplant surgeons met in DC to discuss the state of the field. They were few in number and dispirited. Roughly 300 operations had been performed by then, with only 10 percent of patients surviving more than six months, according to one account. The procedure remained no more than “highly experimental,” in the words of even its fiercest proponents. But the prevailing gloom lifted when two little-known surgeons from Denver, Thomas Starzl and Thomas Marchioro, presented results from a series of transplants they’d performed. They had managed to flip the outcomes: 10 percent failure, 90 percent success. A euphoric shock spread through the crowd, which quickly gave way to skepticism. The results were studied, confirmed, and eventually replicated.
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’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.
THIRTY-NINE THOUSAND PEOPLE in the US joined the list of those waiting for a kidney transplant in 2018, when my brother made his appeal. That same year, there were roughly 6,000 transplants from living donors. There were almost 15,000 from deceased donors. That totals 21,000 transplants. It is hardly worth noting that 21,000 is less than 33,000. Many of the people who received a deceased-donor kidney had been waiting on the list for years, sickening as they waited, often on dialysis, living in a world of muted potential.
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.
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Excellent analysis on the issue and a compelling case for private exchanges. Well-told and impactive with a human face, informative, and highly intelligent. I was a reporter and policy writer for 33 years, and this would be an excellent article to expand for magazine publication. Well done!
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