For decades, fairness has been the bedrock principle of the American organ transplant system. A national registry operates under strict rules so that donated organs go to critically ill patients who have been waiting the longest.
But a groundbreaking New York Times investigation uncovered a deeply troubling shift: Officials now regularly ignore the rankings, leapfrogging over hundreds or even thousands of people when they give out kidneys, livers, lungs and hearts. These organs are often going to recipients who are not as sick, have not been waiting nearly as long and, in some cases, are not on the list at all.
The Times revealed that officials skipped patients on the waitlists for nearly 20 percent of transplants from deceased donors last year — six times as often as a few years earlier. And the consequences are devastating. More than 1,200 people have died after nearing the top of a waiting list, only to be passed over and denied a chance.
Corey Field, a Minnesota grocer, was 10th on a list for a liver when he was skipped. He died two months later. Damon Gault, a Northern California brewer, was eighth on the list for a heart when he was skipped. He died six weeks later. Their families did not know what had happened until The Times told them.
The investigation combined painstaking analysis of federal databases, including one that had never been accessed by journalists; extensive shoe-leather reporting; and innovative 3D rendering and animation to explain how hospitals and the nonprofits responsible for organ allocation have learned to game a complex system for convenience and profit.
Using a new framework for 3D animation on the web, the reporters were able to illustrate the entire scale of the transplant waiting list and to represent detailed data on individuals and their matches. They showed — with heartbreaking specificity and sweep — how 15-year-old Marcus Edsall-Parr missed out on a perfectly matched kidney despite being number one on the waitlist.
All the visualizations were built on real patient data to capture the human toll of the growing problem.
Ignoring the waitlists not only erodes trust in the system, but also has exacerbated disparities in health care: The Times’ analysis revealed that those out-of-sequence transplants go disproportionately to white and Asian patients and college graduates.
The nonprofits and hospitals acknowledged the problem but said it was a necessary, if imperfect, solution to a nationwide shortage of organs. They said fewer organs would go to waste and more lower-quality organs would be transplanted. But with a deep understanding of the system, the reporters showed that both those widely held assumptions were false.
The investigation showed that despite mounting evidence about these allocations, federal agencies and the Organ Procurement and Transplant Network, which manages the system, did almost nothing to address the inequity until The Times got involved.
