Paul Corby, 27, of Pottsville, Pa., needs a new heart. A rare disease damaged his left ventricle, which pumps blood to the rest of the body.
Corby also has autism. He has occasional outbursts and carries a Princess Peach doll for comfort. He lives with relatives because of conflict with a neighbor at the home he shared with his mother. Yet Corby has written three self-published novels and takes his required 19 medications on his own.
When Corby applied to the University of Pennsylvania medical center, doctors deemed him too challenged to care for a new heart, and, in 2011, they rejected him. “Psychiatric issues, autism, the complexity of the process, multiple procedures, and the unknown and unpredictable effect of steroids on behavior” were reasons listed in the denial letter sent to his mother, Karen.
Corby’s story, reported earlier this month in the Washington Post, resonated with us.
Kurt Schuler’s twelve-year-old daughter, Julia, has Down syndrome. She attends a special school in Arlington, Va. Although she has difficulty speaking, she can read hundreds of words. Swimming and yoga are her hobbies. Julia has a cardiac pacemaker, but what if she ever needs a heart?
Now, if she happened to need a kidney, a family member could donate one. But not her father — he already gave his spare to a stranger three years ago after watching two people close to him endure the rigors of dialysis.
As for Sally Satel, she has two new kidneys. In 2006 and again in 2016, two wondrous friends rescued her.
Thus, our interest in Corby and the more than 118,000 people who are on the national transplant “list,” hoping for a new organ. Every day, 22 die, unable to survive the wait.
Transplant decisions can be hard. How long should a drinker be in recovery before he is eligible to receive a new liver to replace the old one destroyed by alcohol? Should a homeless person with no safe place to keep his anti-rejection medications receive a kidney?
Doctors feel the tug of “lifeboat ethics”: With only so many organs to go around, some must die so others may live. Still, we rarely deny stents to patients with coronary-artery blockage even if their diets are poor and they do not exercise. That’s because stents are not rationed. But with organs, the bar is high: Wise stewardship dictates that scarce resources go to those who can maximize the health benefits.
It doesn’t have to be this way. To reduce or even possibly eliminate the organ shortage, we should reward people who are willing to give an organ to save a life.
The barrier is the 1984 National Organ Transplant Act, or NOTA, which bans exchange of “valuable consideration” — that is, anything of material worth — for organs. But altruism, the bedrock ethos of our transplant system, is not enough.
A model compensation plan could look like this: A government entity or a designated charity would offer donors in-kind rewards, such as a contribution to the donor’s retirement fund, a refundable income-tax credit or a tuition voucher, lifetime health insurance, or a contribution to a charity of the donor’s choice. The value of the reward, informal consensus holds, should be around $50,000.
Only the government or a government-designated charity would disburse the rewards. Thus, all patients, not just those with financial means, could benefit. For kidneys, the funds could come from the savings accrued by not spending money on dialysis, which would no longer be needed (dialysis costs roughly $90,000 a year per person).
A designated charity would offer donors in-kind rewards, such as a contribution to the donor’s retirement fund, a refundable income-tax credit or a tuition voucher, lifetime health insurance, or a contribution to a charity of the donor’s choice.
We suggest imposing a waiting period on prospective donors, thereby cooling any impulsivity.
For organs such as hearts, which can never come from a live person, and livers and lungs, which rarely do, a funeral subsidy of $5,000 to $10,000 or a contribution to the estate of the deceased could serve as a benefit.
An excellent step toward reducing or ending the organ shortage would be to create a pilot program allowing doctors to study the effect of such measures, as proposed last May by Representative Matthew Cartwright (D., Pa.) in his Organ Donor Clarification Act of 2016.
Does this mean that every mentally disabled person will get a transplant? No. Even if there were a surplus of organs, doctors would still need to consider the bigger picture — just as they struggle with, say, how many times to replace a heart valve in an injection-heroin user who keeps getting endocarditis.
Fortunately, some people, such as Paul Corby, can manage their treatment regimen through the social support. Indeed, last fall, 30 members of Congress sent a letter to the HHS Office of Civil Rights requesting that it issue a guidance that transplant teams take social supports into account when they assess people with cognitive or behavioral problems and that social agencies should ensure that patients without those services get them.
Stories like Corby’s will continue to offend our sense of fairness, and needless deaths will mount until Congress allows compensation to those who wish to save a life through donation.