America's Organ Transplant Law Is Criminally Unfair to Donors

MEDICINE OCTOBER 23, 2014

America's Organ Transplant Law Is Criminally Unfair to Donors

By Sigrid Fry-Revere and David Donadio

From his desk at the Department of Defense, Steve Lessin spent his life serving his country, developing radar systems to help save American servicemen’s lives. But when he needed an organ transplant to save his own life, the law denied it to him.

Lessin was diabetic but otherwise healthy and active—he was an avid skier and rock climber—until he developed kidney disease in his forties, landing him on the U.S. organ transplant waiting list. He was initially a good candidate for a new kidney, and in 1998, a close friend donated one to save his life, but it only lasted six years. At that point, he had no choice but dialysis, and after four years on it, he was too weak to undergo surgery.

Lessin’s fate was sealed 30 years ago this past Sunday, when the United States enacted a well-intentioned law that effectively condemned him to death.

As a result of the National Organ Transplant Act, more Americans have lost their lives waiting for an organ than died in world wars I and II, Korea, Vietnam, Afghanistan, and Iraq combined. The law bans almost any non-medical payment to living organ donors, whether by the government, health insurance companies, or charities. Recipients themselves can reimburse donors’ travel, lodging, and lost wages, which helps—but only when the recipients have the means and will to do so.

The solution is not to create a market in organs, but to help living donors meet the considerable expenses they incur in saving others’ lives. Giving an organ costs an average of $5,000, but as the Journal of the American Society of Nephrology notes, can be as much as $20,000. According to the U.S. Census Bureau, 20 percent of American households have no discretionary funds at all, and only 8 percent can afford to spend $5,000 donating organs without dipping into their savings or going into debt.

In the coming weeks, the American Society of Transplant Surgeons, the American Renal Society, and the American Society for Transplantation will all release white papers arguing for studies on compensated organ donation. While there is no harm in studying the creation of incentives, the first step should be to get rid of the financial disincentives that currently keep thousands of living donors from being able to donate. One sensible proposal would be creating a debit card-based system not unlike the one the government employs for the victims of natural disasters, enabling government programs, private medical charities, and other people to cover donors’ expenses as they occur.

The situation could scarcely be more dire. In 1983, on the eve of the Transplant Act, there were 10,000 Americans waiting for organs. Today, the number is over 120,000, of whom 100,000 need kidneys. An additional 300,000 Americans are on dialysis, many of whom, like Lessin, might once have benefited from a transplant but are now too sick to qualify.

When we visited Lessin in Arlington, Virginia, in early 2009, his modest apartment smelled faintly of urine, and medical supplies were everywhere. Dialysis bags drained in the bathtub and 30-gallon trash cans sat full of tubing and other medical waste. A small second bedroom had become a warehouse of dextrose solution, saline, dialysis filters, tubing, clamps, sterile gauze and gloves, and more, all in boxes stacked five feet high.

Lessin’s supplies cost at least $50,000 per year. He had 24 feet of dialysis tubing, which allowed him freedom of movement—he preferred the privacy and flexibility of dialyzing at home. “I’m one of the lucky ones,” Lessin said. “I can get everywhere in my apartment except the front door. I have to interrupt my treatment or just not answer the door if someone comes by while I’m dialyzing. But that is a hell of a lot better than having to sit still for hours on end.”

Over time, all forms of dialysis weaken a patient’s heart, reducing circulation, and causing calcium buildups in the extremities. Lessin had undergone several surgeries, including an angioplasty that had saved the lower part of his leg. But by the time we met with him, he had lost several toes, and others were becoming necrotic, blackening and dying.

Tens of thousands of Americans like Lessin die every year, while the barriers the Transplant Act places before living donors live on.

The law resulted 30 years ago from righteous revulsion at a proposal by Dr. Barry Jacobs that the government pay people to come to the U.S. to donate their kidneys. Jacobs wanted to start his own business marketing organs, and figured that the government could spend relatively little compensating these donors—maybe only $1,000 each—and then send them on their way.

Initially, Congress had simply been considering a low-profile law implementing a nationwide network to distribute cadaver organs, but when Jacobs suggested his idea in official testimony, it immediately got representatives’ attention. The prospect that the U.S. would ship thousands of impoverished people here from developing nations so that rich Americans could harvest their kidneys read like the plot of a science fiction novel.

Dr. Paul Terasaki, president of one of the three main American transplant societies, testified before Congress in 1983 that physicians “strongly condemn the recent scheme for commercial purchase of organs from living donors,” and that it is a “completely morally and ethically irresponsible proposal.” Congress reacted by adding a provision that banned all but very specific types of payment in relation to organ donation, and the rest is history.

Today, both Democrats and Republicans rightly fear that reforming the law too dramatically could encourage poor and at-risk populations to sell their organs in exchange for quick cash. But by banning almost all compensation to living donors, Congress has ensured that only the wealthiest and their friends can afford the costs of donating, while hundreds of thousands of other Americans suffer and die.

In his forties, Lessin was young for an end-stage renal disease patient. The average age of an American dialysis patient is 60, and most people get there with Type Two diabetes or hypertension. But whatever the cause, as Baby Boomers age and the obesity epidemic worsens, the kidney shortage will only get worse.

Today, even if every American donated his organs at death, it wouldn’t make enough of a difference; a 2003 study in the New England Journal of Medicine found that only about 1 percent of people die under conditions that allow them to do so. The rest are simply too sick, too injured, or too far from a hospital when they die.

“I thought about buying a kidney on the black market,” Lessin said, “but I was worried my health insurance wouldn’t cover the transplant or my recovery if it was illegal to pay someone for a kidney abroad. I was worried that foreign facilities wouldn’t be safe, and I didn’t want to risk losing my job or landing in jail.”

In July 2009, a few days after we last spoke to him, in a sleepy suburban development almost within sight of the U.S. Capitol, Steve Lessin paid for his loyalty to the law with his life.

Sigrid Fry-Revere is director of the Center for Ethical Solutions, president of the American Living Organ Donor Fund, and a 2014 TEDMED speaker. David Donadio runs a communications and marketing company called Iambic.

http://www.newrepublic.com/article/119963/us-organ-transplant-law-needs-reform-let-donors-get-reimbursed?