Justin Reed’s father was put on the kidney transplant waiting list in 2015, but his doctors in Virginia told him that, at 66 years old and with a heart condition, it was unlikely that the United Network for Organ Sharing would select him for a transplant. There was another option: living donation.
Living donor recipients are not subjected to the same regulations as deceased donors. The organ is meant for the recipient alone—if it was not being given to them, it would not be available at all. Reed decided immediately that he wanted to see if he was a match for his father.
He was, but the doctors decided that, given his father’s heart condition, the risk-to-reward ratio was too high. Reed and his dad tried again, this time at a hospital in North Carolina. The doctors there wanted to work on his father’s heart, wait it out, and set a transplant date to make sure his heart was strong enough to ensure a good outcome from the operation. Discouraged, they tried once more, this time in Pittsburgh, where Reed lives. The University of Pittsburgh Medical Center (UPMC) told them that Reed’s heart and kidneys were affecting each other—and that working on just one wouldn’t help. Within 30 days, they were in surgery.
In the United States, only 15 percent of transplant surgeries last year came from living donors. The wait time for a deceased donor has lengthened over the years, resulting in sicker patients by the time of the operation. And sicker patients are less likely to recover. According to the Scientific Registry of Transplant Recipients, roughly 12 percent of the approximately 75,000 people on the waiting list will die before getting a transplant.
This is not inevitable. In many Asian countries, like Japan and South Korea, 90 percent of organ transplants come from living donors. This is partly out of cultural necessity: Buddhists, for example, believe that it’s important to go to the grave whole. In a live-donor liver transplant, the donor gives up a part of their liver, which regenerates in a few months, allowing them to go to the grave intact.
Why is living donation so rare in the U.S.? Abhinav Humar, clinical director of UPMC’s Thomas E. Starzl Transplantation Institute, said the problem is that most health care providers think of living donation as a last resort. UPMC, by contrast, believes that living donation should be the first choice. “Unfortunately, it’s the best option we have right now,” Humar said.
The U.S. has historically focused its marketing and educational efforts on deceased donations. Putting “organ donor” on your driver’s license is so well publicized at this point that many people think of it like recycling: It’s what those who care about the world do. (Still, only about 54 percent of adults are registered organ donors.)
The first ever kidney donation was in 1954—between living twins–yet it took roughly thirty years after the first liver transplant from a deceased donor, in 1967, for successful living liver donations between adults. The number of living liver donations then steadily increased—from 92 in 1998 to 524 just three years later, according to the Organ Procurement and Transplantation Network.
In 2001, however, there were two widely publicized liver-donor deaths. The general public and medical establishment started questioning the morality of these transplants: What did it mean to put a perfectly healthy person in danger? Did it go against the Hippocratic Oath?
The program at Mount Sinai Hospital in New York, where one of the deaths occurred, temporarily suspended their liver transplants, and the doctor responsible took leave and even traveled abroad to distance himself from the incident. The following year, only 363 living-donor liver transplants were performed in the U.S., a number that continued to fall through the next decade. It wasn’t until 2014 that the numbers started rising again.
The caution surrounding living-donor liver transplants makes sense. It’s a risky procedure—the mortality rate is .2 percent, compared to just .03 percent for living-donor kidney transplants.
Living donations are also expensive, and our laws don’t do a good job supporting donors. A donor’s surgery is covered by the recipient’s insurance, but they also need to think about time off, lost wages, and travel costs. The Organ Donor Leave Act of 1999 gives federal employees 30 days’ paid leave for organ donation, and most states have similar programs for state employees. Fewer than a quarter of all states, however, extend time off or tax incentives to private-sector employees. And since recovery time is anywhere between four to eight weeks—if everything goes well—30 days often isn’t enough.
Last week, the U.S. Department of Labor took an important step by ruling for the first time that the Family and Medical Leave Act—which guarantees employees twelve weeks of unpaid leave for pregnancy, adoption, personal illness, and taking care of a sick family member without fear of losing their jobs or a lapse in health coverage—covers organ donation.* Insurance, however, remains a problem. Historically, insurance companies charged donors higher premiums or refused coverage altogether by labeling a past donation a pre-existing condition. The Affordable Care Act notably prohibited price discrimination for pre-existing conditions, but if Republicans are successful in ultimately repealing the ACA, it could come back. A proposed piece of legislation, the Living Donor Protection Act, would protect donors from the pre-existing condition label.
A study out of the University of Minnesota found that most living donors need outside help—around 23 percent experience financial hardship. Transplant centers are required to assign each donor a financial counselor, but they can only do so much, like make sure donors are aware of what’s required and what resources are available. It’s still the donor’s burden to plan and make sure they are financially secure enough to donate.
Some countries have incentivized living donations to get rid of the financial barrier. In 2013, Australia started a program that provides donors with up to nine weeks of paid time off at minimum wage—currently $694.90 a week. In the U.S., we ask a lot from donors without giving anything tangible in return, except the positive feeling that comes from doing something good. We could adopt an incentive model to better support them.
But is that enough? Why not take it a step further by legalizing the sale of organs? Of course, that comes with concerns of exploitation, but if you can pay a surrogate $30,000 to carry a baby in most states, why can’t you purchase an organ? Both are major medical procedures with significant risks. We don’t demand that women who bear children for others do it for purely altruistic reasons. Still, most American medical experts support incentivizing living donations, but not legalizing private organ payments.
When Reed was at UPMC donating his kidney to his dad, he had a series of deep conversations with his doctor, who had recently lost his own father. Reed thought about all the people he’d met in the first three transplant centers he visited, and how many were dying on that waiting list.
It made him feel selfish—he got to keep his father while others were not so fortunate. He wanted to do something to balance the scales. He learned about liver donations and decided he had something to give.
When Reed met with Humar, he told him he wanted to offset donating to his elderly father by donating to a child. Humar explained that kids don’t have trouble finding a donor—that he’d make a bigger impact donating to someone in the 25-45 age range. Reed agreed. A year and a half after donating his kidney, Reed gave a portion of his liver to a complete stranger. And after both surgeries, he was back to normal activities in just a couple weeks.
Of course, not everyone recovers so swiftly. Most of the people I interviewed who experienced surgery-related difficulties said they would still do it again, but they aren’t running to a transplant center any time soon. In fact, more than one person said they felt like cattle once the organ was out of their body.
UPMC doctors and administrators say that the way to increase living donations in America is simply through education. But that doesn’t seem to be the whole answer. The transplant center at University of Virginia knew about living donation, the center at Wake Forest Baptist Medical Center knew about living donation. That’s not the reason they wouldn’t perform the surgery for Reed and his father. It’s a matter of approach, perspective, and philosophy—thinking that living donations should be the first line of defense—and then going about creating a program that tries to support people as much as possible within a limited system.
That applies not just to medical providers, but to public policy. Support for donors shouldn’t be the exception; it should be required. Passing the Living Donor Protection Act would be a good start, but we could do more to remove barriers that discourage donations. After all, it’s a big ask: You have your body cut open and have a kidney or part of your liver removed. You have to spend months recovering, with long-term risks, and take time off work without any physical benefits. For everything involved, we don’t acknowledge these procedures for what they are—a public service.
We shouldn’t pretend living donation is low risk. We should provide incentives and protections for those who make an extraordinary sacrifice to save other people’s lives.
*This story has been updated to reflect include the Department of Labor’s ruling, which took place while the story was being edited.
