When I was diagnosed with an aggressive form of cancer in 2008, filing a lawsuit that could help extend my life was the last thing on my mind.
But desperate situations don’t call for desperate actions; they call for commonsense ones. One thousand Americans die each year waiting to find a matching bone marrow donor, and thousands more suffer or die after having to gamble on a mismatched donor. A major reason for the chronic donor shortage is that we don’t do one simple thing: compensate donors.
Compensation, such as a modest scholarship or even a mortgage payment, could change the sobering reality that only two percent of the population is on the national donor registry and at least one-third of those people cannot be found when they turn up as a match for a dying patient.
Today, I join a group of patients, their families, a renowned doctor, and a California nonprofit called MoreMarrowDonors.Org in filing a constitutional challenge to a federal law that makes it a felony to offer compensation to marrow donors. We want to make it possible for MoreMarrowDonors.Org to see if strategic incentives to the most needed donors will, as we hope, save lives.
The law at issue is the National Organ Transplant Act of 1984 (NOTA). NOTA was passed to prevent people from selling organs, like kidneys, which don’t grow back. But bone marrow is a blood product. It regenerates within a matter of weeks so the donor loses nothing. And donating bone marrow is safe. It can be as simple as giving regular blood, although sometimes a painful and unpleasant procedure is needed. Incentives would probably make a real difference.
It is irrational for the government to stand in the way of adults who are making an informed decision that they—and not the government—are best able to make. It makes no sense to throw doctors, nurses, patients and donors (or the staff of MoreMarrowDonors.Org) into federal prison for up to five years just for trying a desperately needed strategy for increasing the number of donors.
What I seek to do with the suit I have filed today is to strike down the federal restrictions on offering incentives as a way to expand the pool of bone marrow donors thereby increasing the likelihood that more cancer sufferers will survive.