U.S. Organ Transplant System, Troubled by Long Wait Times, Faces an Overhaul

WASHINGTON — The Biden administration announced on Wednesday that it would seek to break up the network that has long run the nation’s organ transplant system, as part of a broader modernization effort intended to shorten wait times, address racial inequities and reduce the number of patients who die while waiting.

More than 100,000 people in the United States are awaiting organ transplants in a system that has long been defined by an imbalance between supply and demand. Patients sometimes wait years for donated organs, and about 6,000 Americans a year — 17 each day, according to the federal government — die while waiting.

For nearly four decades, the organ donation system has been run by the United Network for Organ Sharing, a national nonprofit known as UNOS. Under contract with the federal government, the network coordinates the work of transplant hospitals and organ procurement organizations to match candidates with donated organs.

The Biden administration is now putting the network’s job out to bid, hoping to foster competition in a system that has effectively operated as a monopoly. Officials say their first task is to upgrade the outdated computer system that matches organs to patients; they are now seeking bidders to do that work.

“This system and the statute that governs it are almost 40 years old,” Carole Johnson, the administrator of the Health Resources and Services Administration, the branch of the Department of Health and Human Services that oversees the transplant system, said in an interview. “Technologies improved. Government processes about transparency have improved. And so the time was ripe for us to do this.”

This is not the first reform effort; 25 years ago, the Clinton administration tried its own modernization initiative. Patients and families say an overhaul is long overdue. They have argued that the system is inefficient, lacks oversight and discriminates against people of color.

“I’m thrilled,” Greg Segal, the founder of the patient advocacy group Organize, said of the proposed changes. Many of Mr. Segal’s family members have a genetic heart condition; his father waited five years for a heart transplant.

A report last year by the National Academies of Sciences, Engineering and Medicine found that the organ transplant system was “demonstrably inequitable,” and suffered from “significant nonuse of donated organs,” the academies said in announcing the study. Roughly one in five donated kidneys is not used, the study said.

In 2021, while seeking public comment on ways to address racial inequities in the system, the Health and Human Services Department said that Black people were four times more likely, and Latinos 1.3 times more likely, than white people to have kidney failure. But Black and Latino people who are on dialysis are less likely to be put on organ donation lists and get transplants.

The current system for organ transplants was set up in 1984, when Congress passed the National Organ Transplant Act. That law created the Organ Procurement and Transplantation Network’s board, a panel of industry experts to determine policies regarding organ transplantation.

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To carry out those policies, UNOS relies on more than 50 local organ procurement organizations — independent groups that persuade families to donate their loved ones’ organs, and arrange for the organs to be removed and delivered to transplant centers. But some of the procurement organizations operate far more effectively than others, leading to vast regional inequities.

Critics say UNOS is insular and lacks transparency. For example, some members of the UNOS board also sit on the board of the Organ Procurement and Transplantation Network.

Ms. Johnson wants to put an end to that. “The referees and the players ought to be two different entities,” she said.

In a statement, UNOS said it welcomed “a competitive and open bidding process” to “advance our efforts to save as many lives as possible, as equitably as possible,” and indicated that it would bid to continue running the system. “We believe we have the experience and expertise required to best serve the nation’s patients,” the statement said, adding that elements of the Biden administration’s plan align with its own agenda.

But in the interview, Ms. Johnson made clear that she wanted to break up UNOS’s functions, beginning with separating the computer matching system from the organization’s other work. She said she envisioned multiple bidders for various transplant-related tasks carried out independently — with her agency setting performance standards.

“This is about setting expectations and bringing more competition to the space,” she said.

The Biden administration has also rolled out a website that will, for the first time, provide detailed, anonymized data on transplant wait lists, donors and recipients. The site will also include outcomes for individual hospitals to help patients and their families make decisions about where to seek care. The moves were reported earlier by The Washington Post.

Change will have to come slowly, said Dr. Arthur Caplan, the director of the division of medical ethics at the New York University Grossman School of Medicine, who has studied transplant ethics for decades.

“The whole transplant system is very delicate; it relies on trust and coordination,” he said. “To reform it, you have to go slowly for fear that you would cause it to halt as it tries to adjust to new requirements.”

The Senate Finance Committee has been investigating ways to improve the organ donation and transplant system, and its members have been pushing for reforms. In August, the committee released a report describing what the panel’s chairman, Senator Ron Wyden, Democrat of Oregon, described as “gross mismanagement and incompetence.”

Between 2010 and 2020, more than 1,100 complaints were filed by patients and families, transplant centers and others, many involving medical mistakes that led to patient injuries and deaths, the inquiry found. Between 2008 and 2015, the report said, 249 transplant recipients developed a disease from transplanted organs. More than a quarter of them died.

At a committee hearing, the executive director of AdventHealth Transplant Institute, a transplant center in Orlando, Fla., said the system was in dire need of restructuring.

“Families in need of a lifesaving organ have no option but to trust the transplantation system that is in place,” said the executive director, Barry Friedman. “Unfortunately, that system has failed many awaiting organ transplant due to lack of oversight and accountability.”

Tonya Ingram, a poet and health activist, was among those who died waiting for a transplant. Before her death at age 31 in December, she posted on Instagram, looking for a kidney donor; appeared in a government video; and wrote letters to members of the Biden administration and an opinion essay with the headline: “Organ donations get wasted every year. That’s killing people like me.”