On the List: Fixing America's Failing Organ Transplant System - Hardcover

STEVE FARBER is a founding partner of Brownstein, Hyatt, Farber & Schreck, a law firm with offices nationwide, where he has represented the Denver Broncos and Denver Nuggets. He has served as commissioner of the Colorado Commission on Higher Education, co-chair of the Host Committee for the 2008 Democratic National Convention, and member of the board of directors for the University of Colorado Hospital Foundation. He also founded the American Transplant Foundation, which seeks to eliminate the shortage of human transplant organs in the United States. He lives in Denver, Colorado.
HARLAN ABRAHAMS is a lawyer, writer, and educator. Formerly a tenured professor of constitutional and administrative law, he is a frequent lecturer on public policy. He lives in Denver, Colorado.

CHAPTER ONE

A TALE OF TWO TRANSPLANTS

On May 11, 2004, surgical nurses in green scrubs wheeled my oldest son, Gregg, from the operating room while they finished transplanting his kidney into me. Then they wheeled me out, cleaned the room, prepped for the next surgery, and wheeled in two Guatemalan immigrants, Ernesto Delaroca and his younger sister, Sandra.

The Farber and Delaroca families had converged in the same hospital that morning. We shared the same doctor, the same operating theater, and even the same waiting room.

But there the similarities stopped. Our separate journeys to the same destination illustrate the dramas and challenges faced by the many thousands whose lives depend on organ transplants at a time when there is a dramatic shortage of organs available to them.

My journey followed a road lined with intense family debate. We argued pros and cons. We argued most about the risks to his own health Gregg would face were he to donate his kidney to me. Why should he have to face those risks? I was 60, white, and wealthy. I shared the helm at the most politically powerful law firm in Colorado. Still, all that money and power could not erase the simple fact: Without a healthy kidney, I would soon die. What the wealth did give me were options that many others did not have.

Sandra, for example, could never have traveled across the globe to purchase a new kidney even though she too faced death without one. Fortunately, she had Ernesto. He was a family man and a hard worker. He had no money or power, but he had exactly what his sister needed: a healthy, compatible kidney. He freely gave his with little ado.

There's a certain irony to these stories. If the coda to my journey erupted in most dramatic fashion on the back streets of Istanbul 3 years after my surgery, then the prelude to Ernesto's journey began in equally dramatic fashion in 1984.

Back then, Cindy and I were preparing for Gregg's bar mitzvah the following year. We were so proud of him. He was handsome then, as he is now, big and smart and charming and articulate, a junior tennis star ranked first in his seven-state region. The theme of his bar mitzvah party would be Wimbledon. Steve Alvarez, Channel 7's senior sportscaster, would interview Gregg, and it would be projected on giant video screens for the 500 guests. There would be tables brimming with food, the abundance meant to evoke the athlete's limitless "training table." And there would be games and music so Denver's gentry could dance the night away. More would be spent on that party than most families in the world earn in years.

By the time Cindy and I were busy planning Gregg's big party, Ernesto, though less than a year older than Gregg, already had become a man. Born on April 10, 1973, in Guatemala City, he was a dark-skinned, boyish-faced youth with thick black hair, straight white teeth, and a well-muscled body. His parents, Valentine and Rosalea, made their home in a tiny one-room hovel in the city, a place divided by curtains into even tinier rooms. They worked the fields outside of town.

Valentine worked especially hard and bought 2 acres of good land, then bought a few more acres, until he finally owned 11 acres in the countryside between the city and the village of Aldea, 40 miles away, where Rosalea's sister and her family lived.

Ernesto loved his parents. His mother had black hair so long that she tied it in a braid that fell all the way to her knees. She was a great cook. His favorite dish was her carne guisada--beef and rice with tomato--though today he favors pasta with shrimp. His father was tall and skinny, a campesino, a peasant, who farmed beans, corn, and rice.

Valentine sometimes took Ernesto fishing, but they didn't have money for treats. Ernesto's best memories of Valentine were taking the bus with him from the outskirts of the city to the family fields to spend the day working together under the sun. That way the son had his father all to himself. They could work side by side in peace.

The family barely got by. They had no telephone or television, but they did have an old radio. Ernesto recalls hearing a lot of talk and not much music on that old radio.

Guatemala was a troubled country back then, torn by insurgency and civil war from the early 1960s until a formal peace agreement was signed in 1996. Communists had taken Cuba and were crawling all over Latin America, fomenting violent revolution. The United States supported anyone, however awful, who stood against the commies.

In March 1982, shortly after presidential elections were held in Guatemala, General Jose Efrain Rios Montt, an evangelical born-again Christian, seized power in a coup backed by the CIA and the Reagan administration.1 A devout anticommunist, Rios Montt's relations with the United States spanned decades and included several presidential administrations, the CIA, the Pentagon's School of the Americas--the infamous "coup school"--and the religious right. He blamed Guatemala's Catholic priests for his defeat in the 1974 presidential elections. The priests had championed the country's poor Mayan peasants, its indigenous underclass who desired land and other reforms, and had leaned neither left not right. Rios Montt had claimed the priests were leftist agents and agitators. In 1978, he left the Catholic Church and became a minister in the Church of the World, based in California. He used to call Jerry Falwell and Pat Robertson his friends.

Yet, when measured by his actions, Rios Montt was no Christian. His years in power marked some of the bloodiest in the history of Central America. Efforts to bring "Guatemala's Pinochet" to justice on charges of genocide have repeatedly failed.

After seizing power in 1982, Rios Montt launched a bloody reign of terror against those he labeled "insurgents and dissidents"--mostly anyone who disagreed with his autocratic ways. Kidnappings, torture, extrajudicial assassinations, and secret military tribunals rained horror upon the people. A state of siege was declared.

The campaign known as frijoles y fusiles--beans and guns--represented the tyrant's effort to subdue the indigenous Mayan population, many of whom were included in the dictator's definition of "insurgents and dissidents." This campaign featured a scorched-earth policy patterned on those used by the French in Algiers and the United States in Vietnam. Entire villages were annihilated, razed, wiped from the face of the earth.2 Thousands of people were killed or disappeared during the 18-month rule of Rios Montt. Amnesty International reports that 2,600 indigent Guatemalans and peasant farmers died in extrajudicial killings during the March-to-July period alone: "People of all ages were not only shot, they were burned alive, hacked to death, disemboweled, drowned, beheaded. Small children were smashed against rocks or bayoneted to death."3

On August 8, 1983, General Oscar Humberto Mejia Victores staged another coup and ousted Rios Montt from power. Unfortunately, this general was even more authoritarian and repressive than his predecessor. The killings continued.

At about 4:00 a.m. on an ordinary day in 1984, a dozen gunmen burst into the Delarocas' one-room home. They weren't wearing helmets, caps, or masks, but they did wear the green uniforms of soldiers and they carried soldiers' rifles. Valentine and Rosalea were sleeping on one side of the curtain while Ernesto, 11, slept on the other side with his sister, Sandra, then a tiny baby, and his brother, Edgar, who was 2 years old.

Ernesto saw the flimsy curtain ripped aside. Before he could move, one of the soldiers shouted at him, "¡Quedate callado!"--Stay quiet!

Another snapped, "¡Note mueves!"--Don't move!

Ernesto was frozen, his eyes wide with fear.

Half the soldiers dragged Valentine and Rosalea from the room. That was the last Ernesto saw of them. The rest of the soldiers stayed behind for about 45 minutes. Ernesto didn't move. He didn't speak. He didn't even cry.

Sandra and Edgar didn't cause any trouble.

There was no screaming. There were no gunshots. All was quiet.

Ernesto's parents simply disappeared.

When the soldiers who had stayed behind finally left, Ernesto didn't wait for tears or panic. He knew they could come back at any moment. So he gathered a few things and, carrying little Sandra, led Edgar out of their one-room home, never to return. He took them to the bus stop and waited for the old bus that went to the fields.

Then Ernesto Delaroca got on that bus with his infant sister and his toddler brother and took them past his father's fields, all the way to Aldea, where his mother's sister lived with her husband and their children. When Ernesto told his aunt what had happened, they cried in each other's arms. Finally, there was time for tears.

Ernesto and his family never found out what happened to Valentine and Rosalea. The family never talked about their disappearance. Later, when Ernesto grew older and tried to make inquiries, no one in the government would acknowledge knowing anything. "They gave me the runaround," he says, sadly shaking his head.

When asked if his parents were "political," Ernesto emphatically says, "No." Although the shape of his eyes might suggest otherwise, he also claims his family has no Indian blood. Besides, the terror of the right- wing death squads knew no strict racial boundaries. Peasant farmers were targeted as often as the indigenous Mayans.

And so another disappearance has never been explained.

When asked if he still thinks about that night in 1984, Ernesto says, "Not often." He made peace with it long ago. He's happy with his life. Every once in a while someone in his family says his parents might still be alive. Someday they might show up.

But Ernesto knows it's not true. He smiles and shakes his head. He knows what happened to his parents that night. That night was the first time he saved Sandra's life.

My story and Ernesto's story are part of a bigger story. This is the saga of the shortage of transplant organs throughout the world and the rise of markets that defy the taboos to supply the demand. These markets lie at the intersection of three great forces that drive today's events: economic forces like globalization that spread capitalism to Third World countries, political forces like sovereignty that demand respect for the boundaries of nations, and legal forces like constitutionalism that impose the rule of law.

US law creates a complex system for allocating transplant organs, a system torn between factors skewed toward geography and those skewed toward need. Geography tends to favor rural states while need tends to favor urban areas.4 Federal and state laws prohibit the buying and selling of organs for transplantation and therapy; these laws preclude the development of an American market to deal with the resulting shortages.5

That's right. The buying and selling of human organs for purposes other than transplantation and therapy are allowed.6 For example, organs may be bought and sold--and commonly are--for research and educational purposes.

But not to save a person's life! This apparent inconsistency arises most often with postmortem donations,7 also called cadaveric donations. But other, thornier issues arise in the context of live organ donation, usually because the risks to the donor's health must be weighed against the needs of the recipient. And, since kidneys are organs that come in pairs and only one is needed to live, the issues of live organ donation arise most frequently in cases of kidney transplants.

The United Network for Organ Sharing (UNOS), a nonprofit organization based in Richmond, Virginia, administers America's only Organ Procurement and Transplantation Network (OPTN), created by Congress in 1984.8 UNOS reports that the waiting list for kidneys topped 60,000 for the first time in October 2004. More than 75 percent of the 99,000 patients on the waiting list as of May 22, 2008, have kidney disease. More than 6,500--twice the number lost in the 9/11 attacks--die each year while waiting for kidneys and other organs.9

Many of these deaths could be prevented. Yet the lists are long, the wait is long, the issues are so very complex. The system is paralyzed. Unless you have a good match in a friend or relative who will give you a kidney, your chance of being among the doomed is too high for comfort.

When faced with death, people seek solutions. In a world of globalized markets and capitalism triumphant, it doesn't take rocket science to ask: With so many unnecessary deaths and such drastic shortages, why not stimulate the supply of kidneys by allowing their purchase and sale?

A few years ago the idea sounded preposterous, but today ... well, things change.

Fifteen years ago the idea of creating functioning capitalist markets for human transplant organs was little more than futuristic fantasy. Today, writes Debra Satz of Stanford University, "There is a growing, well- documented black market in organs like corneas and lobes of livers and especially kidneys."10

Web sites crowding the Internet extol the utility, compassion, and workability of free markets for human transplant organs. Yet only in Iran11 is there a fully legalized and fully regulated market for organs--with countries like Pakistan and the Philippines close behind in allowing the sale of kidneys from private parties. The organ markets in most of the rest of the world, in countries like Turkey and India and South Africa, may be called "black," but in reality they lurk between black and gray. They fall through the cracks of legality.

These cracks are created by the collision of the three great forces that drive today's events. Business in the 21st century is globalized. Markets know no national boundaries. Multinational companies operate internationally, and the maze of differing and conflicting rules is astounding. Yet that is what happens when capitalism triumphs.

And when capitalism triumphs, things both tangible and intangible become not merely commodities, but "commodified."12 Today's goods and services are being chopped into specialties, standardized, branded, packaged, franchised, rendered impersonal. Intellectual property reduces to shrink- wrap. Human organs--precious things of immeasurable value--become commodities to be bought and sold.

That is, in fact, exactly what the champions of the free market approach advocate. Call them the Free Market Camp. They insist, "Let the market work it out. The problem will solve itself if you legalize the buying and selling of organs. The greatest good for the greatest number will be achieved through the efficiencies of supply and demand."

At the same time, equally forceful arguments are made against the buying and selling of organs--making flesh into commodity--by human rights activists.13 Call them the Human Rights Camp. "Noooo!" scream their Web sites, "the free market cannot be trusted to work it out! It's immoral and unethical and it exploits the poor. We should not allow payments to donors, period." Is there no other way?

We can buy and sell blood and semen and eggs. We can rent a woman's uterus. We can even buy and sell organs for purposes other than therapy and transplantation. Perhaps there is a middle ground between prohibition and unbridled market freedom.