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The changing rules of organ donation

Billboards, websites and financial incentives are pushing the ethical boundaries.

November 01, 2004|Melissa Healy | Times Staff Writer

At age 42, Northridge artist Jasmine Abdullah's life seems to hang, suspended, between the generosity of the dead and the greed of the living.

In 1997 -- nine years after a diagnosis of kidney failure -- Abdullah's transplanted kidney came to her as a gift. A teenage boy lay brain dead after a car crash. His stricken family agreed to donate his organs. After waiting three years on the national organ-transplant list, Abdullah's ebbing life was renewed.

Almost eight years later, Abdullah's body is now rejecting that transplanted kidney. So, once again, along with more than 87,000 other sick Americans, she finds herself on the waiting list for an organ transplant. This time, she's been warned it may take six years.

And that kidney may be more of an acquisition than a gift. If Abdullah gets her organ from a living donor -- as 1 in 3 kidney transplant patients currently do -- the donor could be reimbursed for lost pay, transportation and lodging, or in a few states, receive a special tax break. If the kidney comes from someone who has slipped to the edge of death, the family could receive a financial offering. Or a stranger might step forward to offer Abdullah a kidney, in exchange for which the donor's loved one would be moved more quickly up the waiting list.

Outright sale of transplantable organs remains illegal in the U.S. And any payment to the families of deceased donors, while still hotly debated, is illegal. But with the need for organs racing ever farther ahead of the supply, surgeons, ethicists and lawmakers are not only debating the rules of donation, but they are also beginning to rewrite them. Gifts of transplantable organs may someday become, if not a thing of the past, a greater rarity.

In recent months, several widely publicized cases have highlighted the ethical complexities of using money to secure an organ. In Houston, the family of a 32-year-old man with liver cancer recently took out newspaper ads, set up a toll-free number and bought space on two billboards alongside Texas highways to appeal for a liver donor. In August, Todd Krampitz received a liver from a deceased donor.

On Oct. 20, surgeons at Denver's Presbyterian/St. Luke's Medical Center set aside ethical qualms and transplanted a kidney that had been secured through a for-profit website that helps connect those who need an organ with potential donors. Colorado resident Bob Hickey, who was on the waiting list for five years, paid $295 to have his profile posted on the website matchingdonors.com and got 500 offers for donation. Hickey, a retired healthcare executive, is expected to pick up about $5,000 in transportation costs and other expenses incurred by the truck driver, Rob Smitty of Chattanooga, Tenn., who donated a kidney.

Although neither patient appears to have broken the law, ethicists believe both cases probe the limits of fairness. Both patients -- or their families -- used money to cut the waiting time and circumvent a national waiting list that seeks to allocate scarce organs fairly.

California transplant centers have almost 19,000 patients on the waiting list for organs. About four weeks ago, Betty Hite paid $9,000 for billboard space along Santa Monica Boulevard and posted an appeal for a liver for her brother, 56-year-old Ronnie Phillips. The billboard shows Phillips with two of his four grandchildren and in bold letters pleads, "Our grandpa needs a liver ... Can you help?" Like Krampitz's billboards, it offers a toll-free number and a website.

Many ethicists contend that such public appeals are intended to end-run a system designed to apportion donated organs equitably. But Hite, who has watched her brother's fearful three-year decline from cirrhosis and hepatitis C, says she could no longer stand by passively. Her brother has been on the transplant list for almost two years, and she fears he will not survive the wait. Members of the family had discussed buying space on a billboard years ago, but believed it would be illegal. When Krampitz's appeal hit the news in Los Angeles, Hite wasted no time in following suit.

Phillips' family has, so far, had no response, except for one prospective donor who proved to be too old to give a portion of her liver.

Hite, who once dismissed as "horrible" the idea of designating herself an organ donor, now sees the heartbreak such decisions create. "There's so many people who need organs, it's unbelievable," she says. And if money could soften the objections of some potential organ donors or their families, "I don't see anything wrong with that."

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