The changing rules of organ donation

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.”

In April, President Bush signed a bill into law that, for the first time, allows an organ recipient to reimburse directly some of the costs, including lost pay, that a living organ donor incurs as a result of his or her gift. In Wisconsin, a law took effect this year that allows living organ donors (those who give one of their kidneys, a lung or part of their pancreas or liver) a tax break of up to $10,000 to defray expenses incurred in connection with the donation. A similar law has been passed in Alabama, and is on the legislative docket of at least 10 other states. Although California lawmakers have expressed interest, the Legislature has no such proposal under consideration

In many developing countries, the sale of organs occurs regularly. In the United States, transplant doctors acknowledge that paid organ “donors” are occasionally passed off as distant cousins willing to help, although most believe this is extremely rare.

Abdullah got a sobering dose of reality when she posted an appeal for a kidney on a website, organgiving.org, that advocates limited payments to donors. More than a dozen e-mailed offers quickly came in, almost all providing details of payments expected, in return for the donation of the organ she needed. Although many would have been outright illegal, a few might have passed legal muster -- if Abdullah could have paid the donor expenses, which, she said, she could not.

“I’m surprised by how blatant they are,” says Abdullah, whose initial kidney failure appears to have stemmed from an unusual autoimmune reaction.

Abdullah says she has mixed feelings about inducements. “If it increases donation,” she says, “I think it’s a consideration.” But the e-mailed “offers” she’s received have shown her a crueler side of transplantation -- and a greedier side of potential donors -- than she sometimes wants to face. “It’s made me a little more pessimistic about human nature and about people’s intentions.”

*

A new chance at life

However tortured the debate, the need is stark. Every day in the United States, 68 people receive a new organ through transplantation. But an additional 16 die waiting for an organ to become available, and almost five waiting patients become too ill to undergo surgery.

Despite years of public education and donor awareness campaigns, fewer than 20% of American adults are registered organ donors. Only 50% of families, when asked to donate the organs of a loved one who has succumbed to brain death, agree to do so. Meanwhile, better medical care is keeping people with grave diseases of the kidneys, liver, lungs, heart, pancreas, eyes and intestines alive longer. Advances in transplant surgery and post-operative care are offering more patients the prospect of renewed health with a new organ. And Abdullah and other transplant patients are staying alive to seek a third or even fourth chance at life.

In 1993, the United Network for Organ Sharing, which oversees the procurement of organs and their distribution, maintained a list of 31,694 people awaiting transplants. Today, that figure has risen to more than 87,000, while the number of organs donated each year by the deceased -- just over 18,000 organs from roughly 6,000 donors -- has remained virtually static.

During that same period, donations from living donors more than doubled, reaching nearly 7,000 last year. But because living donors normally give up only one organ (compared with an average of 3.6 from a deceased donor), their generosity has done little to fill the gap between need and supply.

The worsening shortage means that the idea of offering “financial incentives” for organ donation just won’t go away -- although it has been dismissed over and over.

When Congress last year passed a bill governing transplant policy, lawmakers abandoned a provision that would have allowed “pilot projects” to test the effect of financial incentives on donation. In recent years, the American Medical Assn. and the National Kidney Foundation have supported the idea of allowing limited financial incentives for potential donors and their families. But when their positions drew storms of protest, both groups reversed themselves and opposed any loosening of current legal prohibitions.

Among transplant patients and those who care for them, however, the issue is far from closed. Richard M. DeVos, the billionaire co-founder of Amway and a heart recipient himself, continues to back efforts to allow payments to the families of brain-dead organ donors, also known as “cadaveric” donors. DeVos has crisscrossed the country arguing that those who agree to donate their organs in the event of fatal illness or injury should be able to designate a $10,000 beneficiary, and that health insurers -- most prominent among them Medicare -- should pick up the tab. Not only would insurers, including the federal government, save money with every new transplant that results, DeVos argues, but more people would be willing to become donors.

Many transplant doctors agree that the financial incentive issue will not fade.

“I think that whole debate is reopening, it definitely is,” says UCLA liver transplant surgeon Ronald W. Busuttil. “If you do a survey of the population -- particularly anyone who knows anything about transplantation, they will tell you there is probably an ethical way of giving some support” to organ donors or their families. “We’ve done all the education we can do” to raise the rate of organ donation, he says. “We’re not getting anywhere.”

In recent years, physicians such as Busuttil have responded to the shortage with a creativity that some people fear verges on the reckless. They are “stretching” donated livers by splitting a single one in two and transplanting the separated tissue into two patients (many of whom will regenerate a full liver after surgery). They are devising “bridge” organs that can keep a patient alive long enough to get a real one. And they continue to experiment with the controversial field of “xenotransplantation,” in which organs from nonhuman species -- so far, only pigs -- are transplanted into humans.

Meanwhile, transplant programs are loosening standards that have long limited how and from whom organs could be harvested.

Physicians at UC San Francisco have found that nearly half of lungs rejected for transplant may, in fact, be suitable. Organs from the obese, the elderly, those suffering from chronic medical conditions and people who engaged in risky behaviors were once rejected. But doctors now regularly offer these “extended criteria” organs to patients who may still be well enough to undergo surgery but who will get sicker with time.

Physicians also are increasingly harvesting organs from a whole new class of donor -- those whose hearts have stopped beating, and are beyond repair, but whose other organs, if harvested and transplanted very quickly, can still be used.

With so few organs to go around, says Busuttil, “we have to use as much creativity as we possibly can.”

As patients’ time on the waiting list has lengthened, some have begun going outside the system designed to allocate organs nationwide. The increasing numbers of living donors, as well as efforts to advertise for a donor, whether on billboards or the Internet, are part of that.

Several regional organ procurement organizations are allowing “exchange” programs, in which a living donor gives, say, a kidney to a stranger. In return, the procurement organization allows the donor to designate someone on the transplant waiting list to move closer to the head of the line.

Meanwhile, the Bush administration has launched campaigns to increase voluntary donorship through education and by enlisting large companies to support and sponsor employees who would give an organ or organs.

Health and Human Services Secretary Tommy G. Thompson has also sought to get hospitals and organ procurement organizations to coordinate their efforts to persuade families of potential donors to give. The gap, however, continues to grow.

*

‘Second-class citizenry’

In a medical field built on altruism, the debate over how to increase the supply of transplantable organs has been anguished and passionate. In a country where so many matters of health are subject to market forces, many say that talk of financial incentives is inevitable.

At the same time, in a country marked by such economic inequities, opponents of paying donors or their families counter that offering incentives will cast the poor, disproportionately, into the donor role and give the affluent a shorter stay on the waiting list.

“It would be poor people who would sell their organs in this country,” said Dr. Francis Delmonico, a kidney transplant surgeon and director of the New England Organ Bank. Any payment to living organ donors, he says, would “create a second-class citizenry” of people whose organs would be commodities and who would risk organ donation under the coercion of need.

Even in cases where a potential organ donor has suffered brain death or certain forms of cardiac death, Delmonico opposes any payment to the family. Such donors cannot be saved, and organ donation poses neither risk nor added cost to these patients, notes Delmonico.

If a payment were provided in these cases, asks Delmonico, how could one deny a live donor -- who undertakes real risks and discomforts -- at least the same? “It becomes a slippery slope,” he says. “I do believe it would be very difficult to draw a line in the sand.”

Dr. Thomas G. Peters, director of the transplant center at Shands Jacksonville Medical Center in Florida, sees payment for some organ donations as the solution to that slippery slope, not its starting point.

Peters has become one of the leading voices in favor of allowing a “gratuity” to the families of cadaveric organ donors, and he has pressed his case in medical journals and lawmakers’ offices.

Peters last year joined 21 physicians, ethicists, spiritual leaders and legal experts in urging Congress to allow pilot studies using a $5,000 “reward” to the estates of brain-dead donors “for the decision to give the gift of life.”

By increasing donations by the dead, such rewards should ease the organ shortage, says Peters. That, in turn, would reduce pressures to pay living donors for their organs.

Sick patients might still turn to family members for an organ that would be a good match. But with a more plentiful supply of cadaveric organs available, fewer patients would have to appeal to strangers. And those, Peters notes, are the circumstances most likely to prompt a discussion of payment. After all, he says, the push toward using live donors for such organs as kidneys was, in the first place, a response to the growing shortage of such organs from cadavers.

Abdullah, the kidney patient, has faced just this situation. Her mother died almost two years ago, and Abdullah says she has no other family member to ask. Two friends stepped forward to offer her a kidney in recent years. But one was found unsuitable for health reasons and the second -- a childhood friend -- backed out unexpectedly.

With no other prospects, Abdullah, who fears she will not survive the six-year wait on the transplant list, says she felt compelled to cast a wider net.

What she didn’t expect was to have the tables turned on her, with e-mail correspondents casting themselves as the ones in need and Abdullah as the person with something to give. “They were looking for help when I was looking for help,” she said.

“Some sounded pretty pathetic. They live in squalor,” she added, referring to several e-mail respondents who wrote from poor countries.

Sometimes, during her trips to the Central Coast, Abdullah ponders her quest, willing herself to stay positive when the wait seems too long.

She also reflects on the young man whose kidney continues, for now, to work inside her body -- a person with whom she says she shares “a sense of connection” that is beyond cost. She thinks that kind of generosity could come from the living as well -- someone “who can really love to that extent.”

That belief -- “that altruism is not lost -- it keeps me going,” says Abdullah. And she waits.