Kidney transplant turns doctor into activist

In 2004, Sally Satel, MD, was diagnosed with end-stage renal disease. She has no siblings, and friends didn't pan out as potential kidney donors. Eager to avoid dialysis, the psychiatrist and conservative author turned to MatchingDonors.com. She even considered a black-market kidney before concluding it was too risky.

After a lead from the Web site fell through, an acquaintance -- Atlantic Monthly writer Virginia Postrel -- heard about the physician's predicament and agreed to donate a kidney.

The March 2006 transplant has so far been a success for recipient and donor, but Dr. Satel hasn't left the issue behind. Instead, she has agitated to improve U.S. organ donation rates.

Dr. Satel has criticized what she sees as an overly timid status quo unwilling to test alternatives such as presumed consent, mandated choice or financial incentives to increase donation rates. But bioethicists and most of the transplant community says such alternatives are unproven and could lead to a backlash that harms overall donation rates.

The reality is both sad and well known. There are more than 92,000 people on the United Network for Organ Sharing waiting list. The list is growing by 5% a year, and 17 of those waiting die every day.

As the organizer of a June conference titled "Buy or Die: Market Mechanisms to Reduce the National Organ Shortage," hosted by the American Enterprise Institute in Washington, D.C., Dr. Satel has used her transplant story and media savvy to bring greater attention to the organ shortage.

She said those who oppose radical changes to the U.S. organ procurement system "fail to see the much larger point of what I did by going to MatchingDonors.com. This is an act of desperation. ... [Patients in need of organs] wouldn't have to do that if there were more organs, so it's clear that everything tried so far has failed."

Criticism of recent reports, stances

After her experience, Dr. Satel has dubbed the Institute of Medicine's 300-page May report, Organ Donation: Opportunities for Action as a series of "recommendations for inaction" because it didn't recommend pilot-testing presumed consent, mandated choice or financial incentives as means to increase organ donation. The report recommended working to increase the number of transplantable organs from cardiac deaths.

In principle, the IOM's Committee on Increasing Rates of Organ Donation, which authored the report, does not oppose any of the approaches Dr. Satel and others favor, said James F. Childress, PhD, chair of the committee and director of the Institute for Practical Ethics and Public Life at the University of Virginia. But the risk of a backlash against policies viewed by the public as depriving individuals of choice or putting a price tag on body parts is too great to proceed, he said. "Certain underlying social and cultural conditions" would need to change to allow such policies to be widely acceptable to the public.

Dr. Satel said her preference would be for a purely altruistic system but that "it's not working, and it's only going to get worse," referring to the growth of organs needed, which is annually outpacing the number of organs donated.

"Instead of wringing your hands over it," Dr. Satel said, "how about doing something constructive to get more organs? We're reupholstering the deck chairs on the Titanic."

She assailed the IOM committee's conclusion that it was premature to consider more radical alternatives as "a posture of paralysis. We are at a point where something truly creative has to be done."

In June 2004, the UNOS board of directors said "MatchingDonors.com subverts the equitable allocation of organs for transplantation," though it has since softened its stance in public statements, according to UNOS spokesman Joel Newman.

In a January 2005 statement on the public solicitation of donor organs, the American Society of Transplant Surgeons said "the transplant community should continue to discourage such 'directed donation' and educate the public regarding the current allocation policies and their benefits."

But no one is cutting in line, Dr. Satel argued, because in most cases of public solicitation the living donors are people who would not have donated otherwise. According to UNOS, 87 living donors chose to give an organ to an anonymous recipient in 2005.

At its Annual Meeting last month, the AMA's House of Delegates adopted a Council on Ethical and Judicial Affairs opinion stating that public solicitation of organs is ethical so long as no one on the UNOS waiting list is "unreasonably disadvantaged." The newly adopted opinion also says physicians should resist pressure to participate in transplants they feel are ethically improper.

Other AMA policy calls for pilot-testing several methods for increasing organ donation, including presumed consent, mandated choice and financial incentives.