Bureaucracy and regulations are preventing a helpful new executive order from having its full intended effect.
In July, President Trump proposed to compensate living organ donors for the costs they incur. He issued an executive order that could save tens of thousands of lives and billions of dollars over the next decade. Unfortunately, the bureaucracy tasked with implementing this policy seems set to squander this historic opportunity to remove financial barriers to donating an organ.
A federal program currently exists to reimburse travel and lodging expenses of low-income organ donors: the National Living Donor Assistance Center. However, it benefits only 8 percent of living donors, and its average grant is less than $2,000. Studies find that the average donor spends more than double that amount. Last summer, President Trump ordered the expansion of that program to cover a much broader set of patients and costs.
In December, the Health Resources and Services Administration (HRSA) published draft regulations to implement that part of the president’s order intended to remove disincentives to living organ donation. But they are disappointing.
The regulations were not published until two months after the intended date, and they cover only the bare minimum of donor expenses defined in the narrowest possible way. The program is twice described as “only a payer of last resort” even though that phrase appears nowhere in the authorizing statute. The proposal postpones a major change, stipulated in the executive order, that would expand the number of donors eligible for the program. Also, while the executive order told the agency to “expand the definition of allowable costs that can be reimbursed,” the proposed regulation misses obvious categories, including lost income (not just lost wages), all dependent care costs (not just out-of-pocket expenses), insurance against the risk of dying during the operation to remove the organ, and protection against any long-run health consequences of donation.
This stingy approach is the very definition of “pennywise and pound-foolish.” It seems that the policy is being treated as an incremental tweak rather than a historic opportunity to help living organ donors, 93 percent of whom are kidney donors. The proposals do not live up to the stated goal of Health and Human Services Secretary Alex Azar: “On living donations, we’re going to dramatically expand support for living kidney donors, so that Americans who wish to be generous living donors don’t face unnecessary financial barriers to doing so.”
One of us wrote in a recent article in the Journal of the American Society of Nephrology that the average living kidney donor in America faces disincentives equivalent to a cost of almost $38,000. We estimate that, if the government removed all disincentives to kidney donation, it would increase the number of donors by 12,500 per year and save that many more lives. It would also save Medicare and Medicaid about $13 billion over the next decade. Requiring donors to spend money for the privilege of donating their organ is unconscionable.
Removing those disincentives is consistent with current law and could be accomplished by regulatory change. Donation should be made as easy as possible for donors, who should receive support to offset their expenses and risks. President Trump has created an incredible opportunity to increase transplantation in America dramatically and save tens of thousands of lives. We hope that the bureaucracy entrusted with carrying out his order will not prevent the opportunity from being realized.
Frank McCormick is an independent researcher who was formerly director of U.S. economic and financial research at the Bank of America. Josh Morrison is a kidney donor and runs Waitlist Zero, a nonprofit devoted to advocating for living organ donors. To learn how to become a donor, visit waitlistzero.org/donate.