Apathy Causes Kidney Patients to Die Needlessly

Common sense reforms to organ donation laws would save lives and money. Unfortunately, Congress tends to ignore the issue.
Amjad Ali, a poor villager from the Cholistan Desert in eastern Pakistan, was promised a job and money in exchange for a kidney. Asim Tanveer/Reuters.

In Bloomberg, a feature story posted this week focuses on the growing number of Americans who are going abroad to get kidney transplants, and the danger these illicit procedures pose to donors and recipients alike. It is very safe to donate a kidney given a good hospital and doctor. The fact that so many people are traveling to developing nations for this procedure is yet another reminder that organ donation policy in the United States is in immediate need of reform. Peru is an especially popular destination of people seeking kidneys, the story notes, but medical tourism of all kinds, and folks seeking new organs in particular, are more common than ever.

The desperation of those who need kidneys is easy to understand. Even if dialysis is working, it's a costly, grueling, and dangerous process, as Robin Fields showed so memorably in the December 2010 issue of The Atlantic. That's why it's maddening that the status quo in kidney donations remains in effect, even though it could easily be improved in ways that leave no one worse off.


Virginia Postrel, herself a kidney donor, explained in another piece for this magazine. Let's look at the context she provided:

In the United States, more than 80,000 people are on the official waiting list, all hoping that someone will die in just the right circumstances and bequeath them the "gift of life." Last year, only 16,517 got transplants: 10,550 with the cadaver organs allocated through the list, and 5,967 from living donors. More than 4,000 on the list, or about 11 a day, died. And the list gets longer every year. 
...With 300 million people in the United States, the numbers shouldn't be so daunting. Eighty thousand people wouldn't even fill the Rose Bowl. Surely we could find enough kidney donors to end the list. But solving that problem demands creativity, daring, and, above all, a sense of urgency--a radical break with the fatalism fostered by dialysis culture. Kidney patients ought to command the kind of outrage that demanded a cure for AIDS. The list doesn't have to exist. It is a result not of medical necessity or economic constraints but of public ignorance, conscious policy, and complacent institutions. Too many people are suffering unnecessarily.

Her whole piece is worth your time. For our purposes, however, let's skip right to the solutions she proposes:

1) "...one way to end the list would be to find more altruists. With, say, 50,000 new living donors, deceased donation could easily pick up the slack. Again, the numbers aren't that big. The Southern Baptist Convention includes 42,000 member churches; the United Methodist Church, whose Web site earlier this year featured the quote, "As United Methodists, we're life savers," counts more than 34,000 U.S. congregations. If each congregation produced just one new living donor, the waiting list would disappear. But kidney donation is a more visceral mission than mainstream religious groups want to contemplate. The only sect to adopt kidney donation as a formal cause is a tiny Australia-based group called Jesus Christians; instead of lauding them, critics point to their donations as evidence that they're a cult."

2) Donor chains.

3) Cash incentives:

Altruistic blood donors often receive freebies like movie tickets or paid vacation hours that would be illegal for kidney donors. Plasma and sperm donors routinely receive cash, as do egg donors and surrogate mothers, who get tens of thousands of dollars.. If transplant centers could pay $25,000 or $50,000 to each living kidney donor, many more people would line up to contribute.

Such payments could even save taxpayers billions of dollars. Long-term dialysis is a federal entitlement. Under a special law, Medicare covers everyone, regardless of age, who has made minimal Social Security tax payments--about 319,000 of the country's 400,000 dialysis patients. Compared with dialysis payments, every transplant from a living, unrelated donor saves an expected present value of almost $100,000 in medical costs, according to a 2003 American Journal of Transplantation article by Matas and Mark Schnitzler, an economist then at Washington University in St. Louis and now at the Saint Louis University Center for Outcomes Research.

Eliminating the waiting list would thus save taxpayers $8 billion, or $4 billion if each living donor received a lump-sum payment of $50,000. That purely financial estimate ignores the enormous benefits for the patients' quality of life, of course. It also excludes the economic gains from returning to productive work--only about 10 percent of dialysis patients are employed even part-time--and the fiscal effects of paying taxes rather than receiving disability payments.

Obviously there is some controversy about compensating donors, especially the notion of a recipient doing so directly. So imagine only indirect compensation for now. See how easy it is to sidestep controversy in the interest of immediate reform? The main obstacle to improving the system isn't entrenched interests, ideological disagreements, or the inherent intractability of the problem -- it's just apathy:

Kidney disease is a low-profile, unglamorous problem, a disease that disproportionately strikes minorities and the poor. Its celebrity spokesman is blue-collar comedian George Lopez, who received a kidney from his wife. "It's not AIDS, it's not cancer," says Jack Daly, who worked on kidney-related legislation when he was counsel for the Senate Judiciary Committee. "Kidney donation is not a very sexy issue." Even uncontroversial bills sit around for years without action.

The failure to better address this problem doesn't say much for our political system. Congress spends so much time arguing about hot button issues of little actual import, tweaking complicated laws in ways that advantage special interests, and obsessing over grand legislation that passes once in a generation, like the health-care bill. In doing so, it ignores a lot of smaller bore legislation that would save money for all of us and improve life for a lot of suffering people.

On the subject of kidney donations, and other issues like it, our legislators should change their attitudes in this way: if there is a discreet problem that can be substantially improved by the right legislation, and it doesn't require a substantial ideological fight or touch on the culture wars or cost a lot of money, it ought to become a top Congressional priority, rather than going ignored in favor of more ambitious or controversial matters. Until that happens, a lot of people are going to continue dying in a system more expensive and ultimately less moral than the alternative.