How To Make Kidney Donors Whole
The reason that Matt Swerdloff has only one kidney is a story that goes back a couple of years, when he visited a close friend in the hospital who had just donated one of his own organs. Why did you do this, Swerdloff asked his friend. To which his friend replied: Why don’t you?
“I really did not have a good answer,” Swerdloff told us. So even though his wife was pregnant with their second child, Swerdloff impulsively decided to emulate his friend’s altruism and contacted Renewal, an ultra-Orthodox charity that specializes in live kidney donations to other Jews. It was an impulsive move, but not out of character: As a Hasidic Jew in Brooklyn, Swerdloff, now 32, said he was raised to give of himself, literally. “We were brought up totally with chesed,” he said.
His rebbe and parents were supportive, but his co-workers at the venture capital fund where he is a partner were incredulous. His boss was initially dismissive, telling Swerdloff that he could not be covered by the company’s generous medical benefits for the operation and weeks of recovery because it was “voluntary surgery.”
The company later relented, but the experience left Swerdloff convinced that organ donors should be officially compensated for the financial consequences of their life-saving actions. “For the average person, that could make the difference between doing it and not doing it,” he said.
Given the dire kidney shortage in this country—the list of patients waiting for transplants is now at 100,000 — Swerdloff’s argument is finally being advanced by medical, legal and ethics experts who believe that incentives and compensation can encourage more live donations without crossing the line into exploitation. But while more than 5,000 Americans die each year waiting for a kidney, there still are no federal policies in place and change is slow. “This is an unregulated environment,” David Toole, the associate dean at the Duke Global Health Institute, told us.
Voluntary groups such as Renewal have stepped in to fill the vacuum. As our Paul Berger wrote last week, Renewal accounts for up to 17% of people who donate a kidney to strangers, even though ultra-Orthodox Jews make up only 0.2% of Americans. Not only does the charity match patients and donors, it also provides all manner of support to its volunteers. Swerdloff said that Renewal arranged for a nanny to help after his surgery left him unable to pick up his new baby.
But the work of a small charity, no matter how efficacious and good-hearted, cannot substitute for a national policy aimed at eliminating the deadly shortage of kidneys. The National Organ Transplant Act of 1984, which prevents the sale of organs, is vague enough that it has been used as an all-purpose excuse for inaction, while in the decades since, the crisis has only grown.
There are creative alternatives. A group of experts from the fields of medicine, economics, law and philosophy proposed what they called a “rational solution” to the kidney shortage in a 2006 paper. It argued that the documented physical and financial costs to donating a kidney should be offset with a one-year life insurance policy; long-term medical health insurance; “reasonable sums” to reimburse travel and lost wages; and a $10,000 tax deduction or a nontaxable lump sum payment of $5,000.
They calculated that this package would cost between $23,525 and $32,800 (this is nearly 10 years ago, remember.) At that time, a single year of dialysis — the painful, expensive and lifelong alternative to a transplant for those suffering from chronic kidney disease — was $58,000, nearly double the price.
The “current U.S. system, based on presumptions of pure altruism, fails to fully reckon the risks (financial and physical) assumed by [live donors] and makes no provision to compensate for those risks,” wrote the authors, led by Dr. Robert Gaston of the University of Alabama. Yet it’s possible to compensate for those risks, they argued, while not stepping into the dreaded territory of exploiting those who sell organs out of desperation or for simple financial gain.
“It is difficult to view this proposal as materially enriching anyone enough to coerce an otherwise unwarranted decision to donate.”
But some did. It has taken nearly a decade for the nation’s transplant experts to acknowledge that there are financial barriers to organ donation. A 38-member working group just published a report arguing that removing the financial burdens is not only more fair, but might lead to more organs for transplant. “What seemed radical in 2006 is now the standard approach,” Gaston told us. “There is an acceptance that donors should be made whole.”
The challenge is to figure out how to remove disincentives in ways that don’t bleed into ethical murkiness — or that violate the 1984 federal law, which bars “valuable consideration.” Experts have been parsing what that phrase means with all the intensity of a talmudic debate, but without the urgency needed to confront a situation robbing lives every day.
We appreciate the need for caution, for pilot projects and such. But, as Gaston and others have noted, everyone involved in the organ donation process — recipients, physicians, hospitals, insurance companies and the American taxpayer — benefits, often financially. Except the donor. The donor is the only one who loses not just a kidney, but time, resources and security.
As Berger reported, the success of Renewal suggests that other tight-knit faith communities may be able to create their own networks of support to encourage live donations. But there needs to be a change in federal policy, and vigorous attempts to find the right mix of compensation and legality, to save lives of those not lucky enough to be in Renewal’s orbit.