A Daisy Chain of Kidney Donations

SEPTEMBER 23, 2008

A Daisy Chain of Kidney Donations
By RHONDA L. RUNDLE
Wall Street Journal

Pamela Heckathorn received a kidney from an anonymous donor on July 30. The operation not only allowed the 51-year-old to avoid dialysis treatments; it also kicked off a chain of transplants that have benefited a number of other kidney patients.

Ms. Heckathorn, a public-school employee in Cypress, Calif., had originally planned to accept a kidney offered by a cousin, but the two had turned out not to be biologically compatible. Before Ms. Heckathorn's surgery, the cousin donated his kidney anyway to another patient. That patient, in turn, also had a willing donor who was incompatible. So that donor's kidney was handed off to yet another patient.

Patients in need of a kidney transplant are seeing a surge in donors as loved ones offer their own kidneys into a pool in the hopes that a "daisy chain" of generosity will save lives. WSJ's Rhonda Rundle reports. (Sept. 23)

So far, three kidneys have been transplanted as part of the chain that included Ms. Heckathorn. The latest recipient's son has agreed to keep the chain going by donating one of his kidneys as soon as another compatible recipient can be found.

All the transplants were performed at Ronald Reagan UCLA Medical Center in Los Angeles by surgeons who believe that such chains of donations have the potential to save hundreds, or even thousands, of lives by making more organs available for transplant.

"This is one of the most exciting things I've been involved with in 30 years in this field," says Gabriel Danovitch, director of UCLA's kidney and pancreas transplant program.

Kidney chains are an extension of kidney swaps, a practice that has led to hundreds of additional live organ transplants in recent years. A swap occurs between two or more sets of incompatible recipients and donors, who are usually family members. If a donor's organ isn't compatible with a loved one who needs a kidney, doctors are able to swap that organ with one from another incompatible pair. Swap operations are usually performed simultaneously at the same transplant center to avoid a situation where one of the donors backs out at the last moment.

Transplant chains have the potential to help many more kidney patients than swaps, medical experts say. A chain starts with an altruistic individual who wants to donate a kidney to help a stranger in need. The anonymous donation goes to a recipient who has lined up a living donor, but who isn't biologically compatible. In turn, that donor's kidney can benefit other patients who have also lined up living donors who ended up being incompatible, each time passing an extra kidney down the line.
The Honor System

In theory, a chain could continue indefinitely, broken only by an event such as a donor backing out. Surgeons say that so far they aren't aware of any case of that happening. "It's all on an honor system; there's no legal means to ensure that it happens," says David Serur, medical director for the transplant program at NewYork-Presbyterian/Weill Cornell Medical Center.

Transplant surgeries can be done sequentially, rather than at the same time, allowing more than one medical center to participate. But many transplant centers aren't sold on the idea of chains. In sequential transplants, there's an increased chance that a would-be donor might be injured or get sick or otherwise be prevented from donating. Some of the chains stretch across the country, and long-distance shipping of organs increases the possibility of a travel delay or damage to the organ.

"There's no fundamental ethical dispute, but I have had reservations [about chains] because I would like to see transplants finalized and completed," says Frank Delmonico, a transplant surgeon at Massachusetts General Hospital in Boston.

Michael Rees, a transplant surgeon at Ohio's University of Toledo Medical Center, is credited with having launched the first kidney chain last year through the Alliance for Paired Donation, a nonprofit he founded. That chain has resulted in 10 transplants so far, involving six separate transplant centers. A second chain Dr. Rees helped initiate is three surgeries long, and a third chain is set to start next month, he says. The National Kidney Registry, a computerized matching service, says it has launched three chains with a total of 11 transplants, and has six more chains that are due to start up soon. The kidney registry was set up last year by a New York businessman whose daughter, now 12 years old, received a kidney transplant.

"The way the math works in chains, there's potential for many more people to get transplants" than the current undersupply of donated kidneys allows, says Elizabeth Sleeman, a policy analyst at the United Network for Organ Sharing, or UNOS. The nonprofit group contracts with the federal government to allocate organs from deceased donors. UNOS is studying transplant chains as part of a broad plan to extend its operations to living donors, possibly as early as the end of next year.
Waiting for a Transplant

Currently there are nearly 77,000 Americans waiting for a kidney transplant. Many of these people could be on the UNOS list for years until an organ donation from a deceased person comes in. Last year, kidney donations in the U.S., from both deceased and living donors, totaled only about 17,000, according to UNOS.

Despite the shortage, many hospitals in recent years have been reluctant to consider offers of kidneys from altruistic donors. Among the concerns: Such donors can require extensive screening for medical and mental-health issues, and they are more likely to back out than are living donor relatives of kidney patients. Last year, there were 97 donations of kidneys in the U.S. by anonymous donors for altruistic reasons.
An Advocate for Donors

But attitudes about altruistic donors are evolving, says Ms. Sleeman, the UNOS policy analyst. "People have been discussing it more, and the more they know about it, the more comfortable they tend to be," she says. The UNOS board this year approved a set of guidelines for transplant centers to evaluate potential living donors, including medical and psycho-social issues, she says. Also emerging is the concept of an "independent donor advocate," separate from the surgeon, who will look out for the donor's interests.

The kidney that Ms. Heckathorn received as part of the chain at UCLA was donated by a 40-year-old woman who lives in New York City. The woman, who requested anonymity, says she was intrigued by the opportunity to start a cascade of donations. "I felt like more people could benefit. I wanted to be a part of that," she says. The matches for the chain were arranged by the National Kidney Registry.

Some transplant centers argue that a fairer use for an altruistic donation would be to give that kidney to the patient at the top of the UNOS waiting list. Indeed, some chains, known as domino chains, do end when the final donor's kidney goes to a patient on the list. That may be a more "equitable" use of a donated kidney, but in the end it likely will result in fewer total kidney donations, says Robert Montgomery, chief transplant surgeon at Johns Hopkins Hospital in Baltimore. Johns Hopkins, a major player in transplant swaps, recently also participated in a chain. "The never-ending chain has quite a bit of merit and we're looking at it," Dr. Montgomery says.
'Mental Preparation'

For donors who have promised a kidney, there can be an emotional toll waiting for an operation whose timing is uncertain. Randy Platt, whose mother was the most recent kidney recipient in the UCLA chain, is now the so-called bridge donor, waiting for arrangements to donate his kidney so that the chain keeps going. Mr. Platt says his operation was set for Aug. 18, but had to be pushed back when a blood mismatch with the intended recipient was discovered. The surgery has been tentatively rescheduled for Oct. 2. The 30-year-old restaurant manager says he is on leave from his job, and is feeling financial pressure as well as anxiety about the surgery. "It takes mental preparation, and you get yourself psyched up," he says.
[chart] Photos provided by UCLA and the families

Write to Rhonda L. Rundle at rhonda.rundle@wsj.com

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