The organ transplant system needs fixing
Tonya Ingram was a Los Angelesbased poet who loved the sitcom “The Office” and actor Tom Hardy. Diagnosed with lupus and suffering from end-stage kidney failure, Ingram testified before Congress in 2021 about her wait for a donor kidney. “My dream is to have a healthy body, a working kidney, and a life that is mine,” Ingram said.
Ingram would not live that dream. She died in December 2022 at age 31, still waiting for a kidney.
There are 103,000 Americans waiting for a transplanted organ, including 4,500 people in Massachusetts, according to the Organ Procurement and Transplantation Network. A 2020 US Senate Finance Committee investigation stated that 6,000 Americans die annually waiting for transplants. Yet the system for coordinating organ transplants is broken, marred by safety failures, logistical failures, and yearslong waits. Thousands of potential organs from deceased donors go untapped.
Since a 1984 law created a national network to match patients with organs, the contract for managing this network has been held by a single nonprofit, the United Network for Organ Sharing, which oversees 57 organ procurement organizations around the country that collect organs and arrange for transport. The cost to operate the network is estimated at $72.5 million in 2023, with money coming from federal dollars and fees paid by transplant centers and others.
A bill that passed the US House and Senate and will be sent to President Biden has the potential to break up UNOS’s nearly 40-year monopoly by creating a competitive bidding process with the single contract broken into parts. Businesses with expertise in areas including patient safety, health care, medical ethics, policy, transportation, logistics, and information technology are needed to bid on these contracts when the solicitation comes out this fall. Federal health officials need to make sure the contract is divided sensibly, with companies obtaining contracts being best able to execute them. This includes scrutinizing which parts of the system would be better served through nonprofit versus for-profit companies, since for-profits will be allowed to bid for the first time. The federal government also needs to ensure that the organ procurement organizations are held accountable for their performance.
UNOS spokesperson Anne Paschke said UNOS welcomes the competitive bidding. “No organization knows the incredibly complex system and the transplant community as well as UNOS, and we look forward to demonstrating how our expertise should remain an integral part of the system,” Paschke said.
Numbers of organ donations have increased over the last decade from around
8,100 in 2012 to 14,900 in 2023. The United States ranks among the top countries in the world for facilitating donations. The surgeons and front-line staff working with donors and patients deserve high praise for doing heartbreaking, challenging work that saves lives. Donors and their families make the system possible with their life-saving choices.
Locally, Beth Israel Deaconess Medical Center just opened New England’s first donor recovery center, where donor patients can be transferred from other hospitals and treated in ways that maximize their ability to donate organs. For example, a person who is already brain dead might be given dialysis to improve the quality of their lungs for donation.
Yet despite these positive signs, there is desperate need for an overhaul in system administration. In 2019, the federal government began ranking organ procurement organizations based on measures of their performance relative to their peers in obtaining consent from donors and families and then actually transplanting the organs. Twenty-four were labeled “tier 3,” the lowest-performing category, which would make them ineligible to renew their contracts in 2026 without improved performance. New England Donor Services, covering Massachusetts, ranks in the middle tier.
The Senate Finance Committee offers a damning indictment of these organizations and UNOS’s failure to oversee them.
It’s review looked at 1,118 complaints against organ procurement organizations between 2010 and 2020. There were 104 complaints about testing procedures, such as an infectious disease not being identified or a patient being given an organ incompatible with their blood type. Between January 2008 and September 2015, 249 recipients were given a disease from their donor organ, and 70 died. (There were around 231,000 organ transplants during this time.)
There were 53 complaints about transportation — for example, an organ missed a flight. Kaiser Health News and the Center for Investigative Reporting’s “Reveal” released their own investigation in 2020 that found that between 2014 and 2019, nearly 170 organs could not be transplanted because of transportation delays. Organs are only viable for a short time after removal from a donor’s body, yet the Kaiser report found that the organ procurement organizations rely on couriers and commercial airlines, which are subject to delays and human errors, and have no GPS tracking requirement.
The Senate review identified 109 complaints related to the process of recovering organs, like staff throwing a kidney in the trash or removing an organ before the donor’s heart stopped.
Separately, a 2021 review by the federal government’s US Digital Service found that UNOS’s technology system is fragile and the agency lacks capabilities to modernize it.
There have been concerns about lavish fundraising expenses by organ procurement organizations. The head of an Alabama organ procurement organization was sentenced to prison for taking kickbacks from a funeral home.
A 2022 study by the National Academies of Science, Engineering, and Medicine said the system is “demonstrably inequitable” with minority populations disadvantaged in accessing transplant services. A Black man filed an ongoing lawsuit against Cedars-Sinai Medical Center in Los Angeles and UNOS alleging that the formula used to determine where someone falls on the transplant wait list — which was changed after the lawsuit was filed — discriminates against Black people.
The modernization bill, if signed into law, would be a step in the right direction, but it should not be the final word on reform. Notably, it says nothing about transplant centers, which have varied performance and different standards for what organs they accept. Some data suggest that decisions made by transplant centers to decline kidneys that fail to meet their standards may not always be in the best interests of patients.
Experts estimate, according to the Senate committee report, that with system reforms and greater accountability, 28,000 more organs could be transplanted annually, while saving taxpayers $40 billion over a decade through reductions in health care spending.
That’s 28,000 potential lives that can be saved.