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Steve Farber was ‘on the list’

Donee and Donor: Steve Farber (l) with Ernesto Delaroca (r)On the List is a memoir of a kidney transplant and an analysis of the technological and policy issues in organ transplantation.

The story is about Steve Farber and Ernesto Delaroca, who met in the hospital the day of their kidney transplants, which took place one right after the other.

The authors of the book are Farber and Harlan Abrahams.

The tone of the book oscillates between the intensely private and personal, and the political and universal.

The personal story is that of Farber and his family, and of Delaroca and his family. The universal is the deaths of thousands of people for lack of a viable organ available for transplantation. To be exact, 6,500 will die this year, while 99,000 wait — and wait, and wait — for a life-saving transplant.

Steve Farber is, of course, well known to Denver Jews for his political activism, charitable leadership and partnership in Denver’s most well known law firm, Brownstein, Farber, Hyatt and Schreck.

Entirely involuntarily, Farber and his entire family and inner circle became consumed with Farber’s suddenly, seemingly imminent death around 2003.

Should he “get on the waiting list” — and likely die, waiting?

Should he buy an organ and get a transplant abroad — and possibly subject himself to arrest or a bad outcome, or both?

Should he ask a family member for a kidney, or even accept one if offered?

Suddenly, the kingmaker cannot make a decision because too many people, all very close to him, have radically different opinions about all these issues.

Oh, and a fourth possibility: denial. Farber’s initial response is that his failing kidney will, somehow, just go away, or get better, or stop getting worse, or take longer to deteriorate.

The vortex of opinions, disagreements, explorations, considerations that consume Farber’s life is laid out in unvarnished detail in this book. Sometimes, painfully unvarnished.

Same for Ernesto Delaroca — a native of Guatemala whose parents were taken away, never to be heard from again, when he was 11.

On top of the personal, medical and public policy issues, this book is a meditation on immigration and class issues. Farber and Abrahams lay them bare mercilessly.

By the time the book came to be written, years after Farber’s transplant in 2005, denial was the last thing one would say about him or any of the other dramatis personae in this volume.

The personal stories are interwoven with the larger policy issues; one cannot choose to read the one without the other. The true importance of the book is not the personal stories, but the issue itself: Why has society not found a way to save the lives of those “on the list”?

Why do so many die, waiting?

Farber identifies two approaches to the policy issue, what he calls the Human Rights Camp and the Free Market Camp.

The human beings that the Human Rights Camp is worried about are the potential transplant donors. They would, this camp argues, inevitably be exploited if commerce in kidneys were legalized. “The idea of buying and selling transplant organs is abominable,” paraphrase Farber and Abrahams.

“Deep moral revulsion” — “some things are just plain wrong” — “exploits the desperation of the poor” — these capture the thinking of the human rights camp, which holds sway today.

On the opposite side is the Free Market Camp, which says: the shortage of organs must be addressed. Its take:

“Organ suppliers — potential donors or their surviving family members — would be offered a market-determined price (which would fluctuate with changes in supply and demand) by procurement firms in exchange for permission to remove transplantable organs at death. . . .

“The resale price would equal the price paid to the donor or family plus the marginal cost to the firm collecting and distributing the organ.”

The “human rights” approach is deeply flawed, while the “free market” approach is skewed, but susceptible to correction and success.

The human rights camp needs to acknowledge that there is no greater human right than life. The idea that a potential exploitation of the poor should prevent the certain death of thousands of people is a desecration of human rights.

And a violation of their history.

Can you imagine — if activists never delivered food packages to Soviet Jews because, potentially, the donors or recipients could get caught and imprisoned? Or, if Martin Luther King, Jr., never held a march because, potentially, marchers could get beaten or killed? Or, if Nelson Mandela never spoke out because, potentially, the apartheid regime could retaliate against him or others?

The Human Rights camp needs to say: How do we legalize commerce in kidneys, and do it in a way so as to prevent exploitation of the poor? But no, the human rights camp simply says, “some things are just plain wrong.” That’s not an argument. It’s an emotion — and it runs counter to the basic human right of all: life.

The human rights camp is profoundly married to paralysis: do nothing. As Farber and Abrahams lay out in great detail, various supposed “solutions” that the human rights camp and others propose — such as mandating the transplantation of cadaveric organs unless the donor “opts out” during his lifetime — have been tried in various countries and failed. The number of organs transplanted, or lives saved, is minimal. The “waiting lists” continue and thousands of the waiters die.

Bottom line: On the question of commerce in organs, the exalted label of “human rights” yields death.

The “Free Market Camp” — the legalization of commerce in organs, particularly kidneys — is on the right track, but its methods could, indeed, exploit the poor. Pay attention to the label: free market. Little or no government regulation.

Furthermore, the market-based solution wants to limit the organs for sale to cadaveric organs. As Farber and Abrahams point out, and as anyone can figure out, “when it comes to kidneys . . . fresher is better. And the freshest are live.”

So even if there were no potential exploitation of the poor under the free-market approach, the increase in the number of organs (and their quality) would be limited.

The solution is both a restriction on, and an expansion of, the free-market approach.

The expansion would be the legalization of commerce in live kidneys and in other, cadaveric organs. This would dramatically increase the number of available organs and the quality of available kidneys. Bottom line: lives would be saved.

Less-than-whole-organs — such as tissues — are already permitted to be bought and sold. If it is “just plain wrong” to sell a kidney, well, it should be “just plain wrong” to sell tissues. But it’s not plain wrong. It’s not wrong at all. It is legal and it is compliant with the highest value of the Torah: “And one shall live by them [the commandments]”; i.e., one shall animate the religious teachings so as to create, rescue, and save life.

Now, to the exploitation question — and the necessary regulations of commerce in kidneys — Farber cites Shaun Pattison of the Sheffield Institute of Biotechnological Law and Ethics in England:

• compulsory waiting periods between agreeing to sell and organ removal;

• a minimum age of the seller;

• preoperative assessment panels;

• mandatory financial disclosure and counseling requirements;

• restrictions on those able to buy organs;

• the separation of buying and allocation bodies.

I would make these additions and modifications:

• a universal price for an organ, subject to variability only in relation to the quality of the organ (based on its age, for example), but not subject to choice by the recipient. The wealthy could not choose the better organ; rather, the quality and hence the price of the organ would come into play based strictly on which organ is available at a given time in a given place. This way, every donor, whoever he is, wherever he lives, receives the same compensation. This would greatly reduce the potential for exploitation of the poor.

• a universal price for the middleman, who receives and delivers the organ, subject to variability only in relation to transportation and other costs. This would greatly reduce the potential for exploitation by the potential exploiters. In other words: no free-market organ brokers; no private party, commercial, organ exchanges.

• a universal standard of health for the donor, which would be the primary objective of the preoperative assessment. In other words: no donation of any body part if that would damage the health of the donor.

• a variable price of the organ for the recipient, based on actuarial analysis of life expectancy with the new organ; and the creation of a government loan fund for recipients unable to pay on their own, said loans to be based on the actuarial analysis. In other words: no discrimination against the poor who cannot afford an organ outright.

Farber and Abrahams call this, or something close to it, “compensation.” They differentiate the compensation into cash, or health insurance, or tax credits. The critical factor, in my opinion, is that the compensation be equal for every donor.

Two additional, critical points:

For those who are scandalized by the possibility of a donor profiting from the sale of a part of his body, consider that everyone else already involved in transplants already profits from the altruistic donation of a kidney: doctors, nurses, hospitals, brokers, lawyers, etc. If it’s wrong to profit from a transplant, shouldn’t everyone else involved renounce all the profits they are already making?

Of course they shouldn’t.

Likewise, it should not be illegal for a person, of his or her own free will, meeting the criteria outlined above, to profit by selling, for a universal, fixed price, one of his or her kidneys (for example).

Right now, virtually the only kidneys available are cadaveric kidneys, i.e., of lower quality than live kidneys. Commerce in kidneys would increase not only the number but the quality of the kidneys. Again, bottom line: more lives saved.

Say, for the sake of argument, that all of Pattison’s suggestions and all of my modifications and all of Farber’s and Abraham’s proposals are wrong. That does not validate the human rights camp. Rather, that only imposes a stiffer obligation on all of us to come up with a system for radically increased organ transplantation.

The basic obligation remains: to save lives.

The basic reality today: it’s not happening; a radically insufficient number of people needing a new organ are saved.

Farber and Abrahams are to be saluted for raising this issue in a poignant way. No doubt, Farber never expected to do this. No doubt, it is now his special obligation and privilege.

I only wish he had placed his own compensation proposal more front-and-center in the book.

I should also say that he favors, along with compensation as the basis for commerce in organs, increased stem cell research, which, he says, will ultimately allow for the regeneration of organs.

Which, of course, would obviate the need for transplants.

Lovely vision. Pursue it.

But in the meantime, thousands and thousands of lives must be saved through a carefully regulated legalization of commerce in organs, as the years and years of stem cell research work their way forward.

Copyright © 2009 by the Intermountain Jewish News

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IJN Executive Editor | [email protected]

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