In the end, of course, the effect of compensation on organ supply is a question that only pilot projects can answer. This is what the NKF is trying to suppress. And yet the foundation once understood the need to experiment. In 1993, the NKF endorsed payment of burial expenses for deceased organ donors, a plan passed by the Pennsylvania Legislature. The foundation also supported a House bill in 1999 that would have granted a $10,000 life insurance policy to families with benefits payable upon transplantation of the deceased's organs. At the time, the chairman of NKF's Office of Scientific and Public Policy testified, "We would support at least a pilot study on financial incentives."
It is unclear why the NKF has become less tolerant of incentives as the organ shortage grows more critical with time. But whatever the reason, it forcefully obstructed efforts at reform in 2003—the last time Congress debated bold incentives. That year, House legislation called for noncash rewards, specifying life insurance policies or annuities to the families of the deceased, not an unfettered free market. But the NKF denounced the proposal, railing against "global economists who would import a poor person into this country" to sell an organ. The bill died in committee, partly because of the NKF's efforts. On the Senate side in 2003, the NKF used its clout to kill a provision to study incentives. Afterward, the NKF boasted on its Web site that "a successful advocacy effort by NKF resulted in the removal of the provision." Imagine the American Cancer Society bragging about having derailed an experimental project that might help breast cancer patients—especially when other respected groups were in favor of the measure.
I have long been mystified by the NKF's stalwart opposition to pilot studies. I was spurred to write now about my puzzlement by a recent encounter with the long arm of the foundation. At the end of July, I was invited to speak about the case for donor compensation at a regional transplant conference. Three days later, I was disinvited. Apparently, my chagrined host had not vetted the topic with the local NKF chapter, which was co-sponsoring the event. "I regret that I am having to withdraw my invitation," he wrote me. The co-sponsoring NKF affiliate, he continued, "was very much concerned about repercussions from the New York office, which they think would view the talk as a repudiation of the party line." The NKF similarly tried to stifle a debate on organ incentives at the American Enterprise Institute in 2006.
To be fair, the NKF does some good. It holds scores of fundraising charity events. It offers the public free screening for kidney disease and makes research grants to scientists. The NKF vigorously lobbies Medicare for better reimbursement rates for dialysis care, and, for better or worse (as some nephrologists will tell you), the foundation's guidelines for dialysis set the standard of care for the 380,000 U.S. patients who receive that treatment.
Congress listens to the NKF because it is a major force within the transplant community. But the foundation's recalcitrance on financial incentives for organ donors is hurting the very constituency it purports to serve. Last year, 4,000 dialysis patients died because they could not survive the wait for an organ. When Congress returns in the fall, the AMA will begin its push for demonstration projects on incentives. The NKF will have a chance to return to its earlier common-sense philosophy about rewarding organ donors. Unless it grasps the opportunity, the foundation should not call itself a true advocate for kidney patients.