Kidney sales proposal in 1983, and the origin of the 1984 National Organ Transpl

[Clark]

http://marketdesigner.blogspot.com/2014/12/kidney-sales-proposal-in-1983-and.html

Kidney sales proposal in 1983, and the origin of the 1984 National Organ Transplant Act (history)

Dr. David Cohen at the NewYork-Presbyterian Hospital/Columbia University Medical Center Renal and Pancreatic Transplant Program recently shared with me the 1983 letter, below, that was received at Presbyterian Hospital from Dr Barry Jacobs, who proposed to purchase kidneys for transplantation, and was looking to enlist partner hospitals.

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You should be able to click on the letter to enlarge it. The stamp is a bulk mail stamp (for 10.9 cents), which suggests that this letter was sent to many hospitals.

The letter states that there were 70,000 Americans with end stage renal disease in 1983, and a shortage of organs. Today those numbers are much higher.

I notice that the name of the proposed venture was International Kidney Exchange, Ltd.  The name "kidney exchange" has of course since come to mean something very different--the in kind exchange of kidneys without any money changing hands--although it is also often called "kidney paired donation," perhaps out of a lingering repugnance to the name as well as the idea.

And below is a story that ran in the NY Times at the time. Apparently Dr. Jacobs was not a model citizen: prior to making this proposal his license had been revoked and he had spent time in prison. This may have helped to make his proposal repugnant, and it was outlawed the following year, in the 1984 NOTA, which stated in part:
"TITLE 111-PROHIBITION OF ORGAN PURCHASES
SEC. 301. (a) It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.
(b) Any person who violates subsection (a) shall be fined not more
than $50,000 or imprisoned not more than five years, or both. "

The act has since been amended to read
(a) Prohibition
It shall be unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce. The preceding sentence does not apply with respect to human organ paired donation.

Here's the NY Times story.

BUYING OF KIDNEYS OF POOR ATTACKED
By WALTER SULLIVAN  Published: September 24, 1983
"A plan to purchase kidneys from living donors, primarily the indigent, for sale to people needing transplants and able to afford them drew strong opposition yesterday on ethical and medical grounds from officials of the National Kidney Foundation.
¶A Virginia physician, Dr. H. Barry Jacobs, has formed an organization, International Kidney Exchange, to purchase and market the kidneys. Some of the kidneys would be purchased from people living in underdeveloped countries.
¶''It is immoral and unethical,'' said Dr. David A. Ogden, president of the foundation, ''to place a living person at risk of surgical complication and even death for a cash payment to that person.'' To do so, he said at a news conference in Manhattan, ''would make a travesty of informed consent, by introducing the temptation and bias of a cash award for consent.''
¶Furthermore, he and other specialists in kidney transplantation said the plan could not be justified medically. They asserted that the success rate in transplanting kidneys from cadavers was just as high as from donors with no blood relationship to the recipient. Contrast in Success Rates
¶Where a living donor and the recipient, being closely related, carry a relatively high percentage of similar genes, the rate at which the organ is rejected by the body's immune system is about 10 percent, according to the foundation. Where the kidney came from a cadaver the rate is 40 to 50 percent.
¶Another risk in purchasing kidneys cited by the physicians was uncertainty as to the medical history of the donor. Situations were also forseen in which parents in search of funds would consent to kidney removal from one or more of their children.
¶Dr. Jacobs, in a telephone interview last night at his office in Reston, Va., responded that 70,000 Americans were dependent on dialysis machines, which substitute for kidney function. Yet, he said, there were only enough kidney donors for a little more than 5,000 patients last year.
¶''How are they going to fill the gap?'' he asked. He also said the danger of infection in a cadaver kidney was ''slightly higher'' than that in a kidney from a living donor. He said the risk to the kidney donor was less than that from a hysterectomy, a relatively common operation involving the removal of all or part of the uterus.
¶Asserting that the voluntary approach had not produced the needed kidneys, he asked rhetorically: ''Where is the wind blowing? It is the money wind.'' License Was Revoked
¶In 1977 Dr. Jacobs's license to practice medicine in Virginia was revoked after he was convicted of mail fraud in a case related to Medicare billing, and he spent 10 months in jail.
¶Kidney foundation officials said there appeared to be no legal method to prevent Dr. Jacobs from buying, importing and selling the human organs.
¶They cited several moves to outlaw the sale of human organs and to promote their equitable allocation.
¶Senator Edward M. Kennedy, Democrat of Massachusetts, has introduced a bill that would establish a study group to explore the possibility of establishing a national system for organ procurement. In the House, Albert Gore Jr., Democrat of Tennessee, has introduced a bill that would outlaw the sale of such organs.
¶Foundation officials agreed there was a shortage of kidneys available for transplant. In 1982 more than 10,000 Americans were waiting for kidneys and only 5,358 transplants were performed."
Posted by Al Roth at 5:17 AM 

[Clark]

October 20th Washington Post blog posted by Al Roth next: https://livingdonorsonline.org/ldosmf/index.php?topic=6474.0

Followed by response: http://marketdesigner.blogspot.com/2014/12/repugnant-transactions-gradual-or.html

Repugnant transactions: gradual or radical change?

Policy makers and advocates who wish to relax a ban on some presently repugnant transactions may not always be glad to have the support of those who demand more radical change, since those more radical changes may remind people of just what aroused their repugnance in the first place.

Two examples have showed up in my email stream lately, the first having to do with those who support "death with dignity" and would like physicians to be allowed to help people nearing the end of life to die peacefully. The second comes from the debate about whether the ban on compensating kidney donors should be relaxed.

‘Prophylactic’ Suicide
"Perhaps the moment is right for broaching the idea of what we might call prophylactic suicide: the decision of an elderly person to pre-empt the grim reaper and avoid the disabilities of extended life.

Organizations such as Compassion and Choices, and Final Exit, are campaigning for dignified terminations of life for those with incurable diseases. And with some success, since Oregon, Washington, Vermont and Montana have recently established the right to aid-in-dying. What I propose goes a step further, extending the right to people before they face terminal or debilitating illnesses.

With nearly half of people 85 or older suffering from Alzheimer’s disease, concerns about quality of life in old age are reasonable, even if opinions about what to do about the situation vary widely. However sane prophylactic suicide might be, getting assistance is illegal."


And here's a counterpoint to the cautious proposal by Sally Satel that I blogged about yesterday.

The Kidney Crisis
by Richard A. Epstein
Monday, October 27, 2014

"Recently, a distinguished list of academics signed an open letter to President Barack Obama, Health and Human Services Secretary Sylvia Matthews Burwell, Attorney General Eric Holder, and the leaders of Congress. The letter implored the administration to take prompt and effective steps to end the shortage of organs now available for transplants, especially kidneys. Its signatories announced: “We call for the swift initiation of evidence-based research on ways to offer benefits to organ donors in order to expand the availability of transplants.“

I chose not to sign that letter. It was not because I disagreed with its unhappy diagnosis that the chronic shortage of organs available for transplants, especially kidneys, is inexcusable; on that point, the letter was spot on. Rather, I refused to sign because I believe that the letter’s call to action was hopelessly slow in the face of an unending cascade of unnecessary deaths. If heeded, its call will be the latest in a long series of well-intentioned failed attempts to end the government scourge created by the current ban on kidney sales. This ban was implemented by the National Organ Transplantation Act (“NOTA”) of 1984, sponsored by Senator Orrin Hatch and then-Representative Al Gore. NOTA’s central provision makes it illegal to “acquire, receive, or otherwise transfer” an organ to another person for “valuable consideration,” which with minor exceptions blocks both cash and in-kind payments.

To solve the problem of organ shortages, we must begin by repealing NOTA and implementing a free market for organs. The area in which that voluntary market would work best is for kidneys, both live and cadaveric. Kidneys are the most desperately sought organ. Of the close to 125,000 people now waiting on the Organ Procurement and Transplantation Network, (OPTN) transplant list, more than 100,000 are waiting for kidneys, and the number is rising daily. Relative to transplants of pancreas, livers, hearts, lungs, and intestines, kidney transfers are the easiest to execute, with the greatest benefits to the recipients and the transferors alike.

The open letter reports that we are in a losing battle with kidney shortages. On the supply side, the number of live donations is now down to about 5,700 per year from 6,000 per year some five years ago. Most of those transfers come from family members, where the matches may be less than ideal, and the health of the donor less than perfect. Also on the supply side, the number of accidental deaths of young individuals is down, which cuts off, for the best of reasons, the most desirable source of cadaveric kidneys. On the demand side, better healthcare now allows individuals who suffer from diabetes and kidney disease to live long enough so that they will actually need dialysis or other treatment.

The ability to get organ donations from strangers is very small even though the net benefits are enormous. The mortality risk to the donor is in the order of 3 parts in 10,000. The extra life to the recipient of a live kidney is in the order of 15 to 20 years. (That figure is far greater than the gains from a cadaveric kidney, whose condition is likely to be degraded at the time of death, and to deteriorate thereafter in the interval needed to complete transplantation, if consent can be obtained in time from grieving relatives.) The gains to recipients of a live transaction, if monetized, could easily exceed one, even two, million dollars, at a total cost that is below $100,000 per donor, which includes personal discomfort, loss of work time, and family dislocations. But altruism does not work well when donors have to incur uncompensated losses of that size. Unfortunately, the huge potential for gains from trade is blocked by the firm NOTA prohibition against organ sales.

The open letter does not refer to those gains from trade. It in fact criticizes them. “To ensure equality,” it reads, “private transactions between individuals should remain prohibited.” The letter then seeks to accomplish the impossible by endorsing a centralized approach administered by the United Network for Organ Sharing (UNOS). This nonprofit organization was founded in 1984, when the risks of kidney transplants were greater and the waiting lists far shorter than the 4.3 years of today. This is up from 2.8 years only five years ago. If UNOS remains in charge, the waiting times will continue to grow.

On the positive side, the letter proposes a set of possible healthcare experiments that might involve the provision of in-kind compensation to potential donors that could cover life-long health and disability insurance and funereal benefits. These could, in principle, be supplemented by “a pension contribution, tax credit, or charitable contribution.” Unfortunately, the letter frets so much about the downsides of improvident kidney transfers that it accepts a set of procedural limitations that doom the experiment. New experimental programs, doubtless subject to extensive internal oversight, have to meet as-yet unspecified standards on informed consent, psychological tests, and of course long wait periods before the donation can take place.

The simplest objection to this program is that it is too little and too late to dent the shortage. Any government experiment will take years first to debate and then to perform. Thereafter further delays will be incurred in trying to make sense of fragmentary data. Any pilot programs will prove yet again that justice delayed is justice denied, especially for the thousands of individuals who die in the interim.

It’s important to realize that any short-term experimental approach cuts out some indispensable benefits that only open markets can supply. The basic logic of a market is that it allows people to match up with others in order to secure gains from trade, which, as noted above, are huge for potential live kidney transplants. But kidney markets are difficult to organize because real gaps in information plague both sides of the market. After all, kidney transplants take place only once for any live kidney donor, and rarely more than twice for any kidney recipient. In one sense, these markets are even more difficult to crack than real estate markets, which exhibit a similar pattern of low-frequency and high-value transactions.

To navigate these markets, it is therefore critically necessary for third party intermediates to add their reputational bond and transactional skills to assure, as brokers, both buyers and sellers (no more donors, as it were) that the transaction will go as scheduled. And, no, there is no need for the government to supply these intermediates. The market forces that generate brokers for real estate could work here, where customers on both sides of the market enjoy full legal protections against bad performance, "