10 Questions with Sally Satel, MD

ASN Renal Express, May 20, 2009

By Sally Satel

Sally Satel, MD, is a resident scholar at the American Enterprise Institute and the staff psychiatrist at the Oasis Clinic in Washington, DC. She has written widely in academic journals and has published articles on cultural aspects of medicine and science in the New York Times, New Republic, Commentary, Atlantic Monthly, New York Times Magazine, and the Wall Street Journal. She is also a notable voice on the controversial topic of organ donor compensation. She has graciously agreed to answer 10 questions for this issue of Renal Express.

You are the recipient of a kidney donation. Please tell ASN members about your personal experience with donation.

In August 2004, I went to the doctor for a routine check-up. I was feeling fine, but basic lab tests showed creatinine over 5 and a subsequent GFR of 16. I do not have diabetes or hypertension or any of the other usual predisposing conditions so it seemed to be idiopathic. Obviously, renal function had been deteriorating quietly over many years. One nephrologist I went to predicted that within roughly six months to a year I would need to begin dialysis. The obvious place to find a donor is one’s own family, but that was not really an option for me. A few friends promised they would donate but backed out. In the fall of 2005, I went on matchingdonors.com. Within a week I “met” a potential donor who pursued some of the work-up but then he disappeared around Thanksgiving 2005. In early November 2005, a few weeks before the matchingdonor guy withdrew, I received an e-mail message from a friend–a fond acquaintance really–whom I knew from the think-tank circuit. “Serious offer” was the message in the subject line. She had heard from a mutual friend that I was looking for a donor and, thank God, she went through with it in March 2006. It leaves one speechless with gratitude.

You are an outspoken advocate for organ donor compensation. In your recent article, “Kidney for Sale: Let’s legally reward the donor” you write that “we should offer well-informed individuals a reward if they are willing to save a stranger’s life.” Please elaborate.

The woeful inadequacy of our nation’s transplant policy is due to its reliance on “altruism.” According to the guiding narrative of the transplant establishment, organs should be a “gift of life,” an act of selfless generosity. It’s a beautiful sentiment, no question and I consider myself a poster girl for the glories of altruism. My donor was moved by empathy and altruism as purely as anyone could ever be. Yet it is lethally obvious that altruism is an untenable basis for transplant policy. If we keep thinking of organs solely as gifts, there will never be enough of them. We need to encourage more living and posthumous donation through rewards, say, tax credits or lifetime health insurance.

The Declaration of Istanbul is a consensus of more than 150 representatives of scientific and medical bodies from around the world (endorsed by ASN). It proclaims that transplant commercialism (when an organ is treated as a commodity) is an unethical practice because donors who sell their kidneys are often financially desperate, ill-informed, unfairly compensated, and receive little post-surgical care. How do you respond to this declaration?

I think the Declaration is a well-meaning but dangerously incomplete document. The only way to prevent an unauthorized market is to increase the supply of available kidneys — though a regulated form of exchange that can offer some form of compensation or reward.

Unfortunately, most of the world transplant establishment does not share this view. Instead, organizations such as the WHO and the international Transplantation Society focus solely on the obliteration of illicit markets.

The latest country to “get tough” is the Philippines. Last year, the government banned the sale of kidneys to foreigners. Soon after Jerusalem Post reported that there were “Kidney Transplant Candidates in Limbo after Philippines Closes Gates.”

Similarly, patients from Qatar who traveled to Manila are “looking for alternative solutions,” according to The Peninsula. Many had turned to the Philippines because countries such as China, India and Pakistan have begun cracking down on illicit organ sales.

Prohibition policy imposed on these countries will only end up pushing organ markets further underground, or cause them to blossom elsewhere. World health authorities should direct their passion toward promoting a legal apparatus for exchange.

A single pronged approach will make things worse. The way to stop illicit transactions — and the depredations of underground markets — is to sanction legal exchanges. Until we do so, the fates of third-world donors and the patients who need their organs to survive will remain morbidly entwined.

You disagree with the notion that any system of legal exchange will eventually become as corrupt as the current black market system. Please share your perspective.

Opponents allege that a legal system of exchange will inevitably replicate the sins of the black market. This is utterly backward. The remedy to this corrupt and unregulated system of exchange is its mirror image: a regulated by state or federal governments and transparent regime devoted to donor protection.

My colleagues and I suggest a system in which compensation is provided by a third party (government, a charity or insurance) and overseen by the government. Because bidding and private buying will not be permitted, available organs will be distributed to the next in line–not just to the wealthy.

We also suggest that lump-sum cash payments not be offered. By providing in-kind rewards–such as a down payment on a house, a contribution to a retirement fund or lifetime health insurance–the program would not be attractive to people who might otherwise rush to donate on the promise of a large sum of instant cash.

Would prospective donors lie about their health to be eligible for compensation? This is not a major worry in the context of regulated exchanges, since they would have to undergo rigorous medical testing over several months, which is the standard of care for altruistic donors. And donors or health-care professionals could be made legally liable for any harm suffered by a patient as the result of receiving a diseased or substandard organ.

What specific policy solutions might be implemented in the United States to create a system of legal exchange?

The government should devise a safe, regulated system in which would-be donors are offered incentives to donate a kidney–not necessarily cash payment but material reward of some kind.

Creative ideas abound. Perhaps a donor could receive something as simple as lifelong health insurance. The most efficient plan would be for states to implement their own creative ways of giving a combination of incentives to donors: tax credits, tuition vouchers or a contribution to a tax-free retirement account.

Keep in mind, it would not be the sick person who reaches into his own bank account to reward the donor, rather the government would provide compensation. That way, no matter how big or modest one’s income, everyone in need of a kidney would benefit. And, in keeping with the current system for distribution of organs from the newly deceased, the kidney would go to the next person in line.

Donors, of course, would receive education, undergo careful medical and psychological screening and receive quality follow-up care. Would the promise of a reward exploit poor donors who saw it as an offer they couldn’t refuse? Unlikely. A months-long screening process and a non-cash reward won’t appeal to those in desperate need of financial help. What they want is quick cash. And that’s not what our proposal calls for.

Within such a framework, altruistic donation would proceed in parallel with a system that offers compensation. But first Congress must revise the 1984 National Organ Transplant Act (NOTA) so it is no longer a felony for donors to receive compensation. This would clear the way for pilot studies of incentives.

Imagine the case of the Good Samaritan donor. He presents to his local transplant center, say in Minnesota, offering a kidney to the next person on the center’s list. He passes all the screening tests, undergoes surgery, and allows a debilitated person to resume his or her full, active role as a spouse, parent, and worker. The donor is a savoir. Truly. The only difference between this scenario and the one I have in mind is that the donor might get, say, $40,000 wired to his retirement account, or a generous tax credit, or in-state tuition for his child, to name some possibilities. Some of the money saved by CMS now that the patient is off dialysis could be sent back to Minnesota to underwrite the cost of the benefits it offers.

The mechanism for such a change exists. Senator Arlen Specter, D-PA, is circulating a draft bill that simply clarifies that NOTA had never intended to preclude government action to reward organ donation.

Thus, if the Specter bill passes, there will be no doubt that donors accepting state-sponsored in-kind incentives, such as a tax credits for living kidney donor or funeral benefits for deceased donors, are not violating the law. Meanwhile, the bill existing penalties for organ brokering are increased.

For countries that are resource-poor and have inferior (to the United States) health-care infrastructure/medical standards, what might be done to implement a system of legal exchange?

If resource-rich countries implemented some variant of the program I described above, the world-wide demand for organs would go down, perhaps even plummet, and the underground markets would be starved.

The key issue here, as my colleague Benjamin Hippen, MD, says is that the barriers to increasing donation are pretty specific to individual countries and cultures. The first step is to identify the barriers specific to the countries one is talking about. The second is to gauge the funding for infrastructure. Without this, it is difficult to set up a robust deceased donor program, because one doesn’t have the same luxury of time that one has with an all living-donor program. With deceased donation, there are significant time pressures to get a lot of sophisticated testing done.

Even if a legal exchange could be implemented in a way that was safe for everybody, there is still the cost of the surgery, long-term immunosuppression, care of complications, and so on. Sadly, in the poorest countries, the cheapest alternative is that people with ESRD will die if there is no dialysis or transplantation.

What is your perspective on transplant tourism (when organs are given to patients from outside a particular country)?

It is tragic evidence of a dire shortage. But how can you blame people for trying to save their own lives? The responsible and humane thing to do is to enlarge the supply of transplantable organs through rewarding healthy, well-informed donors.

What would be the financial benefits of a government regulated kidney exchange program?

Dialysis costs about $72,000 per year. After about 18 months this cost is “amortized” and the remaining expenses comprise $12,000 to $15,000 per year for immunosuppressant medication. People who are transplanted will live longer than they would have survived on dialysis but the cost-effectiveness calculus would still come out ahead. In addition, once transplanted, some portion of dialysis patients under 65 would re-enter the workforce and pay taxes contributing to revenue.

Would organ compensation have an effect on organ donation?

We can be 100% certain of one thing: maintaining the status quo will guarantee more needless suffering and death. Even if we went to a presumed consent regime (which is acceptable to me) we would not come close to even cutting the list by a third. And that is optimistic.

I have heard representatives of the National Kidney Foundation (NKF) claim that compensating donors will “cheapen the gift.” Such an affront to would-be donors will cause them to hold onto their organs. On one level, this seems absurd. Can you imagine a brother telling his ailing sister, “Gee, sis, I would have given you my kidney but now that I hear that someone across town is accepting a tax credit for his donation, well, forget it.”

But if NKF is correct–that some people will withhold voluntary action if remuneration is available to others–then, paradoxically, a regime of donor compensation would be quite the boon to such “altruists.” They would have bragging rights. They were the ones who acted out of generosity, not for material gain, a distinction that not only allows them to retain the “warm glow” that comes from performing acts of charity but also intensifies it. Given the importance of “social signaling” through gift-giving (“look at me, so generous, so civic-minded!”) the opportunity to accentuate the distinction should be most welcome.

Dr. Benjamin Hippen and I examined motivation crowding theory in our book: When Altruism Isn’t Enough: The Case for Compensating Kidney Donors. The evidence clearly does not support the assertions of critics such as Richard Titmuss or David and Sheila Rothman that the introduction of market exchanges simply reduces either a desired motive (altruism) or a desired behavior (donation/procurement). This is a rich topic and I suggest reading our chapter (which I can make available to those interested) but the literature indicates that altruism is not suppressed when the symbolism is preserved (i.e., the person who prefers not to be compensated can direct the benefit to his favorite charity) or when the compensation is sufficiently robust.