America's kidney transplant system is in a state of permanent crisis. Over 100,000 people need new kidneys, and their ranks are growing quickly. Each year, 35,000 more are added to the list, and only 17,000 come off by receiving transplants; 4,400 drop off the list by dying, and 4,000 more exit because they have become too sick to transplant.
What is our country doing about this tragedy? Not enough. Donation rates have stagnated and in some ways declined. In 2001, 6,000 Americans became living donors. Last year, it was only 5,600. In between, the waiting list doubled. We need new solutions.
On Thursday, May 26th, Congressman Matthew Cartwright, who represents Scranton, Pennsylvania, introduced the Organ Donor Clarification Act to Congress. This act would allow pilots of non-cash incentives for organ donation, like tax credits and charitable donation. These pilots would be highly regulated and carefully controlled under the supervision of rigorous medical ethics boards--the kind we already trust to make hard decisions about health care.
There are not enough champions for patients with kidney failure in Congress. Cartwright, also a sponsor of the Living Donor Protection Act, is one of the most passionate. As a kidney donor who knows that some day my recipient, John, will likely need another transplant, the Congressman has my deepest appreciation.
In the days ahead, some will claim that piloting incentives for organ donation is an extreme or even repugnant solution. Don't believe them. Carefully testing incentives has broad support in the transplant community, including from past presidents of leading professional societies and from the directors of transplant programs like Mt. Sinai, Weill-Cornell, the University of Minnesota, and Ohio State.
I admit that treating organ donation like a market exchange raises troubling questions. Could it cheapen the act of donating, crowd out existing altruistic reasons to give, or confer favor on those most able to pay? This is why pilots need to be carefully designed. But given the death toll, it would be almost criminal not to test every possible ethical solution.
Yet there is another, better way to offer benefits to kidney donors: not as payment for their organ but as recognition for their public service. If there is any problem with the Cartwright proposal, it is its market purchase approach.
We should focus instead on what society owes kidney patients-- on treating kidney donors with the respect they deserve. This is not something that would need to be tested with pilots. Repaying this debt cannot wait.
Right now, kidney donors bear the financial costs of donation. We bear the medical risks entirely on our own. International standards call for lifetime donor follow-up, but the United States requires just two years, which is unacceptable. Our country has failed to respect the dignity of living donors.
And to be fair, part of this is because we donors haven't spoken up. For many of us, donation was among the proudest moments in our lives. We don't want to say anything negative that could be misinterpreted to imply we think people shouldn't donate.
Donation's not for everyone, but studies repeatedly find more than 95% of all living donors are satisfied with our decision. The long-term risks of donation are real but manageable. Donors are healthier than the average American before they donate and remain so afterward. Lifetime risk of kidney failure is lower in kidney donors (~1-2%) than it is in the general population (~3%).
But what demands we donors speak out are all the people who need a transplant and can't find a living donor. That's six out of seven patients on the waiting list. I picture their loneliness, their feeling like seeking donation would make them a burden to those they love; I think about their family members who attend funerals and wonder if they could have done more. It's heartbreaking.
Clearly, potential donors don't feel that society is doing everything it can to support their decision. And people who need kidneys are afraid to seek living donation as a result. Something needs to be done.
That something is justice for kidney patients. It requires a GI Bill for donation: free, lifetime health insurance for donors; payment of our lost wages; lifetime follow-up care and annual stipends for those who participate in research. It also means supporting the recipient by educating patients and their families about donation. Right now more than 75% of transplant recipients feel inadequately educated about living donation. Those are the people who get a kidney. Just imagine what it's like for everyone else.
By increasing donation, these policies would save taxpayer money. Each transplant saves the federal government nearly $150,000, far more than what the transplant support program above would cost per donor. Treating kidney patients with dignity would save both money and lives.
So Congressman Cartwright deserves all of our applause for his work to take on this critical but neglected issue. Researching incentives is worth doing, but let's also treat this as just one step towards the broader ethical commitment we need to make as a nation.