Gift of Life: Illinois is set to consider a measure giving the deceased final say in organ donation

Mar 1, 2005

One cannot shop for the gift of life. In fact, buying and selling organs is a federal crime. But with vital organs such as hearts, livers and kidneys in short supply, it's becoming more common for the seriously ill to advertise their individual plight. They're not skirting the law. But by directly soliciting donors, they are circumventing the national organ allocation system and drawing attention to a supply-side problem that stirs up a host of controversial proposals.

Illinois is set to consider a relatively small change in its organ donation law that could save up to 100 more lives a year. But by adopting a system where the deceased has the final say in organ donation, this state merely would be accepting what is already in place in 42 other states.

The national debate focuses more on the ethics of compensating donors to increase the organ supply. Last year, 5,551 people nationwide died while waiting for transplants and another 1,450 were dropped from the waiting list when they became too sick to undergo an operation. As a result, the American Medical Association, among others, has endorsed trial studies to gauge the impact of reimbursing organ donors.

Congress banned the practice in 1984, responding to tales of opportunistic individuals such as H. Barry Jacobs. A year earlier, the Virginia physician founded International Kidney Exchange, which, for a fee of up to $5,000, offered to acquire the kidneys of financially needy individuals, including some who live in developing nations.

Just two years ago, a British man briefly offered one of his kidneys on eBay, but the online auction site said the posting contravened a company policy that prohibits listing "humans, the human body or human body parts." It was not the first time the company removed such a listing. In 1999, a kidney drew bids of more than $5.7 million before eBay shut down the auction.

Still, the national organ shortage has given rise to other avenues, including MatchingDonors.com. For $295 a month, needy patients post their stories in the hopes of attracting altruistic strangers willing to part with a kidney or a section of liver.

Last October, Robert Smitty of Chattanooga, Tenn., made headlines when he headed to Denver, where he gave a kidney to a man he met through MatchingDonors.com. Upon returning to his home state, Smitty was arrested for owing more than $8,000 in back child support. The Rocky Mountain News in Denver also reported that Smitty was convicted of dealing drugs in the 1990s and had spent time in a prison boot camp. He received $5,000 in compensation for expenses incurred by the donation, and some questioned whether there had been a tacit agreement for additional cash. 

"He had a long history of scamming and ripping people off," says Arthur Caplan, a University of Pennsylvania bioethicist. "This wasn't somebody who woke up one day and said, 'I'm going to be a good person and help my fellow man.'"

Spurious philanthropists such as Smitty have many observers, including Caplan, questioning whether illegal organ sales are occurring under the guise of extraordinary generosity. Last year, 80 healthy people gave organs to complete strangers. The first anonymous exchange didn't occur until 1998, 44 years after organ donation began with a successful kidney transplant between identical twins.

Last summer, Todd Krampitz, a 32-year-old Houston man posted his plea for a liver on billboards and the Web. It worked. Krampitz got a liver last August, and his Web site (www.Toddneedsaliver.comnow gives updates on Todd and his new organ.

Donors, both living and deceased, can direct organs to whomever they want. But bioethicists, the medical community and organ donation officials generally agree that direct donations should be limited to loved ones or close friends. Otherwise, the most needy patients get skipped over in favor of what Caplan calls more "mediagenic" candidates.

"There were people, in the case of Krampitz, who had much greater need than he did," Caplan says. "He basically pushed them off the lifeboat and got in."

 The problem is that the lifeboat is well past capacity. In early February, the national transplant waiting list contained more than 87,000 names, a fourfold increase from 1988.

While each donor can contribute multiple organs, the United States has only about 6,000 deceased donors each year. That's because less than 2 percent of the population experiences brain death while on a ventilator, typically the only scenario when a cadaveric donation is an option. On a positive note, the number of living donors has quadrupled since 1988, even outpacing the number of deceased donors in recent years.

Unfortunately, demand still exceeds supply. Each day, about 18 people die while awaiting a transplant. They're replaced by another 110 daily additions to the waiting list — one every 13 minutes.

David Kaserman spent four years on the list, having twice received a donor kidney. "That was unquestionably the catalyst that pushed me to do work in this area," says the Auburn University economics professor who in 2002 co-authored The U.S. Organ Procurement System: A Prescription for Reform. The book makes a case for offering financial incentives to living donors and the families of deceased donors in the hope of boosting the national organ supply. 

The suggestion of plying living donors with cash payments has been maligned by many in the scientific and medical community who argue such a setup would prey on the poor and the debt ridden, including indigent immigrants willing to sacrifice the prospect of long life for quick cash. 

At the same time, such a system could create a scenario where donors seek out the highest bidder, meaning an organ would not necessarily go to the person with the greatest need. Kaserman now focuses on deceased donors. "You use the market to increase the number of organs supplied, but you don't need to use the market to allocate them," he says. "That can be done exactly the same way it's done today — on the basis of need and [genetic] match and so on. The only difference is we'd have more to go around."

A payment of $1,000 to $5,000, Kaserman says, would clear the market. Survivors could use the money for funeral arrangements or even allocate it to their favorite charities. Kaserman suggests the government would eventually save $50,000 for every kidney recipient who no longer would need dialysis treatments. Such a system, he says, would eliminate the shortages for hearts and livers within about five years. Kidneys account for roughly two-thirds of the organ waiting list, so Kaserman says clearing that backlog might take a decade.

Of course, it also would take an act of Congress. Buying and selling organs are felonies punishable by up to five years in prison and a $50,000 fine under the National Organ Transplant Act of 1984.

Caplan, the bioethicist, is perhaps among the most vocal critics of donor payments. Paying living donors, he argues, would violate the medical ethos of "do no harm." Beyond that, this country may simply be too wealthy. Caplan says it would probably take around $250,000 to convince even the poorest Americans to donate a kidney or a piece of liver. Compensating deceased donors creates another set of concerns.

"For cadaver donations, when people don't donate it's often for aesthetic, religious reasons or fear. They worry that if they sign a card and say, 'Take my organs when I die,' literally, they may not get aggressive medical treatment," Caplan says. "That may sound difficult to believe but it's a fear many people have. The poorer you get, the more that fear tends to be there. So if you tell somebody, not only do we want you to carry a [donor] card, but we're going to pay a lot of money for your organs when you're dead, you're not solving that fear, you're making it worse. You're putting a bounty on them, basically."

Fear from the living could be one stumbling block. Disgust on behalf of the deceased is another.

"Donor families I've spoken with and worked with are very much against receiving money for their donation. 

It offends them," says Deborah Surlas, who chairs the patient affairs committee of the United Network for Organ Sharing, the nonprofit organization that administers the national Organ Procurement and Transplantation Network. 

Surlas, an Aurora nurse, received a pancreas and kidney from a deceased donor in 1993. She works with a number of patient support groups and served on the federal Health and Human Services Advisory Committee on Organ Transplantation.

"Strict payment because you donated organs I don't think is a good idea," Surlas says. "But if it's something to help defray burial expense, most donor families have said that is something that should be discussed after the donation, so you're not coercing someone into donating because they're going to get some funeral money. If we went to first-person consent, that would solve a lot of those problems."

A special legislative task force has recommended that Illinois move to first-person or primary consent. Currently, the final decision in organ donation rests with the next of kin and not the state's organ donor registry.

With more than 6 million names, the Illinois organ and tissue donor registry is the largest in the country. But it is essentially useless if the next of kin says no. That happens about 40 percent of the time, according to Jerry Anderson, president and CEO of Gift of Hope Organ & Tissue Donor Network, the organization authorized to oversee organ donation for most of the state.

"If you have a driver's license in Illinois that was properly signed and witnessed by two people, that could be a legal document," Anderson says. "We basically never see that."

Instead, Gift of Hope relies on a 24-hour hotline to check whether a person who has been declared brain dead is on the state's nonbinding organ registry. If the person is on the list, Gift of Hope still must convince family members to honor the loved one's wishes.

Illinoisans are asked to be organ donors when they obtain a driver's license or a state I.D. card at secretary of state facilities. But Anderson says most people don't realize that they're not making a binding decision, which is why participants are encouraged to discuss their decision with friends and family.

Legislation the General Assembly could consider this spring would establish a new binding registry for motorists renewing their licenses, new drivers and I.D. card recipients who want to be organ donors. 

It would cost an estimated $400,000 to set up and $60,000 to maintain each year.

Most drivers must renew their licenses every four years, so the new list could take some time to grow. Even so, Anderson says the change should result in 30 additional donors per year. On average, each deceased donor contributes three or four organs. So changing the law could save another 100 lives each year.

Separate from the task force recommendation, one state legislator wants Illinois to follow Wisconsin's lead and begin offering a $10,000 income tax deduction to help compensate for expenses incurred by living donors. Rep. Shane Cultra, an Onarga Republican, says a multiple transplant recipient from his hometown came to him with the idea. Only two House members voted against the measure last year, but it never got a vote in Senate. The proposal would require an estimated $100,000 in annual state revenue.

"It's a good idea," says Cultra who revived the legislation this year. "It really needs to be done. And it doesn't cost a lot of money."

Making Illinois a first-person consent state also is considered a low-cost solution to the organ shortage. But because the policy already is in place in all but eight states, the national debate has begun to focus on presumed consent, a philosophy that is foreign to the United States.

In some European countries, including Spain and France, citizens must explicitly request to be excluded from organ donation. Otherwise, anyone declared brain dead is considered eligible to become an organ donor. Studies suggest the move has increased organ donations in those countries.

"I, personally, don't think we're ready for it," says Surlas, who consults with donor families and transplant recipients. "I think we value our rights and our freedoms in this country so much that to be told that we will be organ donors — I don't think this country as a whole would accept that."

Bioethicist Caplan says he has been studying a less invasive approach.

"Instead of trying to pass a law, you can also try to approach families from a less presumptive to a more presumptive spin," he says. "Let's say I call you up and say, 'You know, you went to Southern Illinois University and you love that place. And I know you've got a lot of other things that you need to give money to and a lot of tuition bills, but have you ever thought about giving any money to the old Salukis?'

"Or, I can call you up and say, 'Look, you went to Southern Illinois, you love that place, how much can I put you down for? One thousand? Or two thousand?'

"Now that's presumptive."

The approach is certainly nothing new to marketing professionals, and Caplan says preliminary data from tests done in fives states indicate such a change can attract more donors.

"We can get the same rates that they see in Europe without changing the law, just by changing the approach," he says. "So I think that's an interesting way to go."

It's also the case that simple, inexpensive solutions, such as making Illinois a first-person consent state, might spare policymakers from having to wrestle with more complex, controversial proposals such as soliciting organ donors. 

 

Illinois Issues, March 2005