Living organ donors shouldn’t have to pay for their altruism

There was a striking reminder in recent news concerning supply, demand and the resulting grim proximity of money to organ transplantation.

A federal judge in New Jersey sentenced a New York City man to 2½ years in prison for being at the center of an international organ-selling scheme that set a price tag of $120,000 per kidney (the living “donors” got only a fraction of that amount). It is thought to be the first prosecution in the United States of this type of criminal operation that, sadly, is well entrenched and even more unscrupulous in other parts of the world.

Yet even in the reverse image of that gruesome scenario — a truly voluntary living donor working with a transplant program that would have caught any impropriety — there is a troubling financial element at play.

Donors in this country may face costs beyond the expected expense of the operation and related medical care. They may be left to pay the bills for travel, meals, accommodations, lost income and other expenses, including medical costs if their own health is compromised because of the operations. They also take on at least some risk of future discrimination from employers or insurers.

At the low end, the added expense of donating may be a few hundred dollars, but the range can rise to about $20,000. Federal law strictly prohibits the selling of any organs, but donors may be reimbursed legally for their expenses. Still, that hardly is a guarantee.

Low-income donors and recipients can get financial aid through the National Living Donor Assistance Center, which is federally funded. More affluent recipients also can choose to pay donors’ expenses directly. But there remain donors who nevertheless have reported being forced to bear a financial price for their good deeds.

That’s why the American Medical Association House of Delegates voiced its support in June for an important proposition: Living donors should not have to fear negative financial consequences for giving the gift of life. The recommendations call on governments, state and federal, to help remove financial barriers to living donation. That includes provisions for mitigating out-of-pocket expenses, ensuring access to health insurance, and guaranteeing freedom from discrimination in employment and in obtaining life insurance.

One example noted in a report to delegates is the proposed federal “Share Your Spare Act,” which would provide a tax credit of up to $10,000 to cover donor expenses or lost wages. A number of states and the federal government already have enacted a patchwork of donor work leave provisions, mostly for government employees. There also are a number of state tax credit provisions for donors.

The Affordable Care Act and its prohibition against preexisting condition denials, upheld by the U.S. Supreme Court after the delegates’ vote, is expected largely to take care of concerns about donors’ future access to health insurance coverage starting in 2014. Necessary legal protections against discrimination in employment and in purchasing life insurance are still lacking.

The AMA’s policy is the latest in its long history of supporting appropriate and practical solutions to increase the supply of organs for transplantation. The Association is on record as supporting greater physician awareness of and participation in organ donation, promoting living wills and advance directives, and urging the use of driver’s licenses and state ID cards to facilitate donation, among other initiatives. The AMA also has recommended a pilot project to test compensating cadaveric donation.

Arguably, there should be far less need for live donors, given the number of organs that are buried or cremated every year. Those organs are no longer of any use to their original owners but desperately needed by patients.

As it is, the number of live donors roughly has matched the number of cadaveric donors for a decade. That makes live donation not an altruistic outlier but a critical pillar upon which the entire transplantation system rests.

There are about 6,000 live donors annually, mostly kidney transplants between family members. All told, there were more than 28,000 transplants, with cadaveric donors supplying a disproportionate number, because more organs can be harvested from the deceased.

Yet more than 110,000 individuals are left waiting on the recipient list. More than 7,000 died last year because their time had run out.

The enormous gap between the number of people needing organs and the pitifully low supply brings out both the best and the worst of humanity. The law in the U.S. is clear and in place to punish those worst players, the ones who seek profit from buying and selling organs. It’s time to recognize that the law hasn’t done nearly as much as it can for those charitable live donors who are the best among us.