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New options needed to increase organ donations
As shortages continue, experts weigh alternatives
When a patient in Chicago nephrologist Paul W. Crawford’s practice suddenly turned up with a new kidney after a trip to Mexico, the doctor didn’t want to ask a lot of questions.
"I don’t know how he got [the kidney]," he says. "He wasn’t on their list long, if they have a list. I didn’t ask him, because I was not involved in the decision. I had to follow him, because he is my patient and I won’t abandon him. But I don’t like the idea that he would do that."
As the shortage of available donor organs continues to worsen, physicians are beginning see patients take desperate measures in an attempt to save their own lives or those of their loved ones.
Crawford says he has had several patients turn up with transplanted organs after taking mysterious trips abroad. And although purchasing human organs is illegal in almost every country on the planet, it is well known that a vibrant black market in human organs exists. In several countries, particularly in the Middle East and in China, poor people sell their own organs or those of relatives, children, or condemned prisoners.
As a result, affluent U.S. residents can go abroad and purchase donor organs, while those not so fortunate must wait — and often die.
According to data collected by the United Network for Organ Sharing (UNOS), 17 people die each day in this country because a donor organ did not become available in time. Despite continued growth in the number of living organ donors, those organs are not nearly enough to meet the demand.
The situation has become so dire that many in the transplant community who have long opposed altering the nation’s current altruistic donor system are arguing that major changes are needed.
"We definitely need a better system than what we have," notes Crawford, who also is the chairman of medical affairs for the Rockville, MD-based American Kidney Fund (AKF). "Most of my transplants are now living donors, related and unrelated. People have to turn to that because the cadaver list is so long, people just become distraught."
Even patients who don’t go abroad will travel across the country in search of an area where the wait for an organ is not as long, he explains.
"If you are on a waiting list in Chicago, you have a five-year wait on average. But some people in Florida may wait only eight months or a year," he notes. "People who can afford to go all across the country getting on different waiting lists. People who can’t are waiting five years."
More public education is needed to address the myths that many Americans still have about organ donation, Crawford believes. And more recognition needs to be given to people who become organ donors and people who receive donated organs.
"We need people to be more vocal who have transplant organs and who are leading normal lives to speak out," he says.
A key problem, according to UNOS officials, is that, while studies show a majority of people are in favor of organ donation, fewer than half of families consent to have their loved one’s organs donated when they are approached after that person’s death.
Currently, there is no national registry of organ donors. Even if a person indicates his or her consent for donation on a driver’s license or donor care, in most cases, permission must still be obtained from a person’s next of kin.
A few states, including Texas, Nevada, Virginia, and Pennsylvania, have laws stating that a person’s written consent to donate will be honored in spite of family member objections, but critics say such laws are often not enforced because of the fear that public disagreements with grieving families will discourage donation.
Last year, a similar law went into effect in Iowa, and organ procurement officials launched a massive public relations campaign to support it.
"What we now have is known as first-person’ consent," says Paul Sodders, spokesman for the Iowa Donor Network, the organ and tissue procurement organization for that state. "The law now says that if you record your wishes — mark yes’ on your driver’s license or sign in with the Iowa Donor Registry, or even write it down on a sheet of paper — no one can override your wishes."
The state law went into effect on July 1, and although it has not been on the books long enough to have a measurable effect in the donation rate, network officials believe its impact will be significant.
"We have had family members tell us that, without our presenting evidence that donation is what this person wanted, and with the existence of the law behind it, they would not have consented," says Sodders. "Within the first three weeks of the law’s passage, we had a family that actually said to us, It makes sense now that you are showing us the driver’s license and telling us the law, but we probably would have said no without that information.’"
In conjunction with the new law, the Iowa Donor Network has launched a statewide, computerized donor registry. People willing to have their organs and/or tissue donated after death can sign up on-line or send in their personal information to the network offices, Sodders says.
The network initiated a large publicity campaign about the new law and new donor registry and has brochures with information about registry at each driver’s license registration office, he continues. "One of the things we found when we were doing publicity about the new law is that people were outraged that their family could overturn their decision. People assumed that if they marked yes’ on their license or signed a donor card, it was an automatic thing."
An earlier Iowa effort would have gone even farther.
In 1993, students in a seminar at the University of Iowa School of Law wrote the Cadaveric Organ Donor Act (CODA), a proposed federal law that would have mandated a choice — people would have to either consent to be an organ donor, refuse consent, or opt for consent under limited circumstances when applying for a driver’s license, Social Security card, or alien registration number.
Though the proposal garnered a lot of attention in the academic community, the effort didn’t get off the ground in Iowa or elsewhere, Sodders says.
But such mandated choice laws are necessary if the public is ever going to consider organ donation a public and social responsibility, believes AKF’s Crawford.
"I think organ donation needs to become more of a socially accepted and expected phenomenon," he says. "The law should be that if you don’t want your organs donated, you sign something and then everyone else’s organs will be donated but yours won’t. We need laws that will get some of these organs that are going in the ground to go into people and save some lives."
Legalized organ selling?
Others argue that the only way to improve the public’s willingness to consent is to allow donors or their families to receive some sort of financial compensation for their organs, and this sentiment appears to be growing.
Last summer, the American Medical Association’s (AMA) House of Delegates voted to encourage organ procurement organizations to begin studying the use of financial incentives to improve donation rates.
Existing educational campaigns and initiatives have failed to substantially increase the cadaveric donor pool, the delegates noted, and alternatives must be considered.
The AMA is not endorsing the use of financial incentives to increase organ donation. It is simply recommending that this concept be studied," Frank Riddick, MD chair of the AMA’s Council on Ethical and Judicial Affairs, said at the time. "Sixteen Americans die needlessly each and every day because there aren’t enough available organs to save their lives. As America’s physicians, this is a problem we must address."
A 1984 federal law expressly prohibits any financial compensation or inducement to organ donors or families. However, if the law were modified to allow selling of organs or compensation to donors in limited circumstances, many more people would be motivated to participate, some experts feel.
"I really don’t think people have much of a problem with the idea of organ donation, they just don’t see anything in it for themselves," says Gregory Crespi, JD, professor in the Dedman School of Law at Southern Methodist University in Dallas.
Organ futures contracts?
Crespi has proposed the establishment of an organ futures market in which a person could, through an intermediary, agree to have his or her organs harvested after death, sold to an interested party, and then the money given to their estate.
The purchase price of the organs would be built in to the cost of the surgeries and covered by the insurance companies or public health plans paying for the remainder of the patient’s care.
Crespi’s proposal has been published, in depth, in at 1994 edition of the Ohio State Law Journal.1
"The way I imagine that it would work would be large intermediaries — probably insurance companies that would have several contracts — would present you something as part of a package deal when they sell you insurance," Crespi explains. "A company like Aetna might sign up with a million people for organ futures contracts, which means that, statistically over time, they can expect a pretty regular flow of people whose organs become harvestable."
Once a person with such a contract dies under circumstances permitting organ retrieval, the intermediary would post information about the available organs on an Internet site so that transplant centers could purchase them.
"When someone comes in and needs a transplant, they could go to the Internet connection and see what organs were available," he continues. "It would be electronic matching where people would access the system when they needed to buy or sell."
Arrangements could be made quickly so that the organs could be harvested and quickly sent to the center performing the surgery.
"I think the organ futures contract buyer as sort of an intermediary who would pay the estate and then charge whomever is buying the organs — that cost gets passed along to the cost of the surgery and whomever is financing the surgery," he says.
His calculations have placed the price of most organs at around $30,000, not a substantial amount to add to the approximate $200,000 cost of the entire surgery.
Of course, wealthy people would be better able to afford both the organs and the surgery, but that is already true now, he argues.
Patients able to pay out of pocket for expensive surgeries are able to get them before the less affluent. Currently, all people have to wait for organs. But under his plan, so many more organs would be available that the shortage would not be an issue, he says.
"Remember with more organs available, it might even drive the price down," he adds. "It may push a few more people onto Medicaid and public funding, but the people who are insured — basically, the insurance company is going to figure that all of these surgeries are going to cost a little more and pass it along in slightly higher health care premiums. Most of us would end up paying a few more dollars a year for a health insurance policy that now would pick up the cost of the organ as well as the surgery."
Benefit to heirs
Most people would be willing to sign up for an organ futures contract that would pay their estate approximately $150,000 for their organs if they are able to be harvested.
"It’s like a free $150,000 life insurance policy if you happen to die in a certain way," he says. The process should be entirely consensual and allow the person signing the contract to back out at any time, he notes. "If you sign up and change your mind, you can back out at any time, but your family could not override your wishes," he notes.
Under his proposal, a person must consent to offer his or her own organs — and a person’s organs could not be sold after their death if they did not have such a measure in place, he notes.
"As with any system, there is the potential for abuse," he notes. "But I think these contracts can be policed in a way that would take care of these concerns."
In addition, his plan would not cheapen the act of donating organs, but instead allow people to see the true value of the gift that people are giving, Crespi argues. "If you believe in organ donation as a social responsibility, you can still agree to donate your organs. Right now, if people donate their organs, they are only giving away something they cannot sell. Under my plan, if you agree to donate, it is a more meaningful gesture."
But any market system for selling organs will inevitably end up with the organs going to the highest bidder and leaving out people with limited means, argues Crawford.
"It would create a gambling or lottery system and that gets corrupted so easily," he notes. "If you have a system where people are paying, the poor people are going to go without while the rich people will all have them."
• Gregory Crespi, JD, Dedman School of Law, 3315 Daniel Ave., Dallas, TX 75275-0116.
• Paul Crawford, American Kidney Fund, 6110 Executive Blvd., No. 1010, Rockville, MD 20852.
• Paul Sodders, Iowa Donor Network, 8191 Birchwood Court, Suite J, Johnston, IA 50131.
1. Crespi G. Overcoming the legal obstacles to the creation of a futures market in bodily organs. Ohio State Law Journal 1994; 55:1-21.