Thousands of patients die each year while waiting for an organ transplant — and not just because of a donor shortage.
How many people need transplants?Â
About 104,000 Americans are on the organ transplant waitlist. While a record 46,632 transplants were performed in the U.S. last year — up about 17 percent since 2019 — 16 people die every day because compatible kidneys, livers, hearts, and lungs weren't found in time. On average, patients have to wait two years for a single lung and three to five years for a kidney, the most commonly needed transplant organ. Those delays stem from a shortage of usable organs, but also from mismanagement of the country's transplant system. In recent years, congressional committees have heard reports of organs being left to spoil in airports and arriving at hospitals in boxes marked by tire tracks. One in four kidneys removed from deceased patients never make it to live ones. The national organization in charge, the United Network for Organ Sharing, is 15 times more likely to lose or damage an organ in transit than an airline is a passenger's bags. An overhaul of the system was signed into law last year by President Biden, but for many, those reforms came too late. "My dream is to have a healthy body, a working kidney, and a life that is mine," poet and lupus patient Tonya Ingram told Congress in 2021. She died 19 months later, at age 31, after more than three years on the waitlist.Â
Why is the system so dysfunctional?Â
Critics of UNOS say it's because the organization is a stagnant monopoly. Founded as a computer-based organ-matching system in 1977, the private nonprofit won an exclusive government contract to manage the entire U.S. organ donation network in 1986. UNOS oversees 56 regional organ procurement organizations, or OPOs, which are responsible for collecting organs from hospitals, and packaging and labeling them for delivery. UNOS has never revoked a single organization's license, even though regulators class a majority as "failing" or "underperforming." A 2019 study found that OPOs could recover some 28,000 more organs from deceased donors every year. Accusations of financial mismanagement are also rife. A 2023 Health and Human Services report identified $664,295 in Medicare funds misspent by OPOs from 2015 to 2019, with money splashed on expensive meals, sports tickets, and other executive perks marked as "education and awareness." The CEO of Los Angeles' OPO, ranked among the worst in the nation, has an annual compensation package of about $1 million.Â
Are there other problems?
OPOs often use commercial ground couriers and airlines to transport organs, some of which end up lost in transit or get delayed beyond viability. In August 2019, one Dallas hospital announced it had lost three kidneys in just a month: One was delayed because of weather; another was never placed on the intended flight; "the third organ was mistakenly taken to the wrong airport and missed the intended flight." During transportation, many organs are tracked with phone calls and paper manifests; GPS and electronic tracking are not mandated. Despite the horror stories of lost and damaged organs, Roger Brown, a director of policy at UNOS, notes that almost all transplant tissue arrives at its destination without incident. "We're never going to get rid of flight delays," he told NBCNews.com. "We're never going to get rid of human error."Â
How will the new law change UNOS?
It breaks up the organization's federal contract and lets for-profit and nonprofit groups bid for pieces. That competition and infusion of fresh expertise, lawmakers say, should result in improved oversight, technology, and logistics. But the problems with the national transplant system go beyond UNOS and OPOs, according to experts. The share of transplant kidneys discarded in the U.S. is double that of France or the U.K., partly because of how clinicians assess the organs. Surgeons typically only have 30 minutes to review donor and recipient characteristics before opting to approve or decline an organ, and many don't want to risk approving one with minor flaws. There's "no penalty for a surgeon declining a kidney at the last minute and no incentive to try to use a kidney that is found to have a repairable injury," said transplant surgeon Joshua Mezrich, or even "a small area of discoloration." Decisions on a high-risk organ might also be affected by "how much sleep" a surgeon may have gotten, adds Mezrich, or "how good a candidate the recipient is for the organ."Â
How are potential recipients assessed?
There are many variables, including a patient's age, overall health, and genetic makeup. Economic factors can also play a role. Panels at transplant centers judge candidates by the likelihood they will stick to a regimen of expensive drugs, and whether they've secured a full-time caregiver for their recovery. A 2023 study found that, of the 44 percent of liver transplant candidates kept off the waitlist, 17 percent were denied because of lack of financial or social support. Among kidney patients, whites are four times as likely as Blacks to receive a timely living kidney donation.Â
Can new technology cut wait times?Â
Biotech startups have started experimenting with animal organs, successfully implanting kidneys from genetically modified pigs into two patients too sick for the transplant list this spring. But such innovations are still in their early stage; for now, the focus remains on making the current system more effective. That alone could result in "a zeroed-out waiting list for heart, lung and liver transplants" and a sharply reduced wait for kidneys within three years, said Dr. Esther Choo, an emergency-medicine expert at Oregon Health & Science University. Because the status quo is so dire, she added, "it can only get better."Â
A price tag on kidneys?
Kidneys from live donors have the best chance of successful transplantation, but the number donated each year — approximately 6,000 — has remained unchanged since 2000. U.S. law forbids donors to be paid for their lifesaving gift, but a group of policy experts and donors is pushing Congress to pass the "End Kidney Deaths Act," which would make live donors eligible for $50,000 in tax credits over five years. Proponents argue that this compensation structure will prevent organ trafficking and the exploitation of the poor and desperate. One study suggests it would add 11,500 living donors per year to the rolls. Other donors say they should at least have all surgery-related expenses — including travel and time off work — fully compensated. "I was deeply honored to give my kidney," said Martha Gershun, but "individuals should not have to pay out of their own pocket to save someone else's life."