Original story at: Washington Post
David Sadler For Congress 12th CD/Illinois

Organ Exchanges Push Boundaries
New Tactics to Attract Living Donors Raise Issues of Ethics and Altruism
By Susan Okie
Washington Post Staff Writer
Saturday, June 9, 2001; Page A01

When 13-year-old Corey Stephens' kidneys stopped working, neither of his parents was a compatible organ donor for him, and they were told it would take at least a year and a half before he could get a kidney from someone else.

But there was another option, doctors at Boston's New England Medical Center told Corey's family. One of his parents could donate a kidney -- to a stranger -- and in exchange, Corey would be bumped almost to the top of the hospital's waiting list for a cadaver organ.

After watching her son suffer illnesses and infections while undergoing dialysis several times a week to cleanse his blood of impurities, Susan Stephens made a decision. " I finally said, 'I'll do it,' " she recalled. " If I was going to donate to Corey, I would have had to be giving my kidney anyway. "

So in February, Stephens, who lives in Fall River, Mass., underwent surgery to donate one of her kidneys. It went to Evangelos Natsinas, 35, who had waited six years for a transplant. Two weeks after her operation, she was rewarded: Corey received a kidney from a 30-year-old man killed in an accident.

The Stephenses were the first in the country to avail themselves of an unusual new program for recruiting living kidney donors. Previously, would-be donors whose kidneys weren't a good enough match for a sick family member or friend were turned away. Now, in New England and the Washington area, they are being offered an alternative: Give your kidney to a stranger and move your loved one close to the head of the line of people waiting for a cadaver kidney.

Such a trade, known as a living donor/cadaver exchange, is one of several novel strategies being adopted by some organ banks and transplant programs around the country to combat increasingly critical shortages of kidneys and other organs. The programs have forced ethicists and transplant surgeons to revise their assumptions about how much selflessness can be considered normal and to redraw the boundary between asking for a reasonable sacrifice and offering a quid pro quo.

Buying or selling organs is illegal and considered unethical. And good Samaritan donors, who offer to provide an organ and receive nothing in return, are sometimes rejected because of doubts about their mental stability, said Richard J. Rohrer, chief of transplant surgery at New England Medical Center in Boston, where Corey Stephens was treated. But he and other experts said they see no ethical problem with getting kidneys through the kind of swap the Stephens family accepted.

" This is a way for us to offer them the opportunity that they sought, " to give a kidney to their loved one, he said. " I find the ethics . . . to be transparent. The motivation [of the donor] is really in your face. The only people we entertain here are disappointed people who had planned to donate " to a family member or close friend.

Screening Safeguards

Like other living donors, people who offer to give a kidney in such an exchange must undergo psychological screening and counseling to make sure they understand the risks and are not being coerced, added Lloyd Ratner, director of renal transplantation at Johns Hopkins Medical Universities. Although research has shown that kidney donors have a normal life expectancy, there are possible complications during surgery to remove the organ and, in the long run, a slightly increased risk of high blood pressure or kidney failure.

" Obviously, there have to be safeguards for the people who are donating, " he said.

Corey Stephen's kidneys failed to develop normally and gradually stopped working. Susan Stephens, 42, said she had not registered as an organ donor before facing her son's illness, and found the prospect of giving up a kidney frightening. But since his surgery, her outlook has changed.

" Corey's kidney function just the day after [his transplant] was astounding, " she said. " I really wish that I could do something as far as helping people who are in my position. I know what it feels like. "

Long Waiting Times

The new programs are a response to rising demand for organs. While the nation's organ supply has remained relatively constant, demand has increased dramatically. Nationwide, almost 77,000 people are on waiting lists for an organ transplant. In the Washington area, as of mid-May, 1,954 people were on waiting lists for an organ.

" For everybody everywhere, waiting times are going up, " Rohrer said. " We are listing many more people " as candidates for transplant of kidneys and other organs because transplant surgery and treatments to prevent rejection have improved, making transplants safer and more successful, he said.

Kidneys are in greatest demand -- more than 49,000 people are waiting for kidneys nationwide, including 1,485 in the Washington area. The average waiting time for a kidney is more than three years.

The demand has led to intensified efforts to recruit living donors. Last year, according to government figures, 5,532 living donors gave organs in the United States, an increase of 16.5 percent over the previous year -- the biggest jump on record.

Nationally, 13,290 kidney transplants were performed last year, including 5,227 with organs from living donors. Kidneys transplanted from living donors survive and function longer than cadaver kidneys, and in recent years have made up an increasing proportion of kidney transplants.

Moving Up the List

Seven Washington area transplant programs and the Washington Regional Transplant Consortium, this region's organ procurement organization, recently established the country's only local registry of living donors. When a living donor provides a kidney under the program, the WRTC allocates it to the compatible recipient at the top of the waiting list for the entire Washington area. " This is really a community resource, " said Lori E. Brigham, WRTC's executive director.

The living donor/cadaver exchange program under which Corey Stephens received his kidney was set up by two organ banks and 15 transplant centers in the New England region, Rohrer said. Under the program, a donor gives a kidney to the compatible recipient nearest the top of the waiting list at the transplant center where the donor's family member or friend is being treated. In exchange, the donor's loved one advances nearly to the top of that hospital's waiting list for a cadaver kidney, although emergency cases and people who are a perfect match for an available organ still receive priority.

A similar program here allocates the living donor's kidney to a recipient at the top of the Washington area waiting list, even if that person is being treated at a different hospital from the one performing the surgery to remove the kidney. It has not yet resulted in a transplant, but a suburban Virginia woman is scheduled to donate a kidney to a stranger later this month to boost a close friend to the top of the Washington area list, Brigham said.

The New England and Washington area programs were extensively reviewed by ethicists and received permission to proceed from the United Network for Organ Sharing, a nonprofit organization that maintains the national transplant waiting list.

Watching Consequences

Robert M. Veatch, a medical ethicist at Georgetown University who chaired a committee that developed the Washington area program, said such swaps benefit most people on the waiting list by removing one name (the person who gets the living donor's kidney).

The only people it might theoretically hurt are those with type O blood, he said. Such individuals can donate blood and organs to a person of any blood type, but can only receive them from a type O donor. Type O kidneys are unlikely to enter the organ pool through the programs, since would-be donors who are type O can generally give kidneys to their own relatives. On the other hand, a type O person on the waiting list whose relative contributed an organ of another blood type would thereby move up the list, passing other type O individuals whose relatives had not donated kidneys.

" If you are on the list, have O blood type and don't have a relative . . . your waiting time may increase under this scheme, though we don't know if that's going to happen, " Veatch said. " What we've done is simply commit to monitoring this very closely to make sure there are no serious negative effects. "

In another strategy to increase the pool of kidneys, two living donors whose tissues are not compatible with those of their own relatives can, in essence, swap organs: Donor X gives to Y's relative, and donor Y gives to X's relative.

Only 10 such dual transplants, called paired exchanges, have been performed nationwide, according to UNOS. Ratner said a paired exchange is being planned at Johns Hopkins but has been difficult to arrange for logistical reasons. The plan is to transplant both recipients on the same day, in part so that no one can back out of the arrangement.

" You need four different [surgical] teams and four different operating rooms, " he said. " We said we would let the pairs meet each other only afterwards, not before. "

Sacrifice or Instability?

The most controversial living donors -- but the fastest-growing group -- are people who have no relative or friend in need of a kidney but offer to donate one anyway. The first known kidney transplant from an unrelated, anonymous living donor was performed in 1998, according to UNOS. Eight were done in 1999 and 76 last year. Transplant programs in Washington, Baltimore and Richmond, among others, accept such donors. Four such transplants have been performed in this area, WRTC's Brigham said.

" We've had over 90 individuals come forward at least requesting information about this, " Ratner said. " We've done two [such] transplants and we have about half a dozen more in the works. "

Rohrer said he is reluctant to take kidneys from these good Samaritan donors.

" How do you know what their motivation really is? " Rohrer said. " We've had some inquiries . . . and at various phases along the way we've found that the person just did not meet the psychological profile that we thought was adequate. "

Veatch said doctors' and ethicists' ideas about who is a suitable organ donor have changed radically in recent years.

" For a while, surgeons were assuming that only genetically related people were acceptable donors, even though a non-genetically related friend or [family member] may be much more highly motivated, " he said. " I can't imagine any moral reason to object to spouses or stepparents or anyone else . . . who passes through the psychological screen and gives adequate consent. "

The logical outcome of that shift, he added, is to allow people who want to give an organ to a stranger to weigh the risks and make that decision.

" The initial concern was that human beings aren't really that altruistic and, therefore, we're suspicious of the mental state of the donor, " he said. " It turns out that there are people who are that altruistic. . . . We've got to quit being as suspicious as we have been. "

2001 The Washington Post Company