Organ transplant system faces an overhaul
WASHINGTON — The Biden administration announced 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 that, under contract with the federal government, coordinates the work of transplant hospitals and organ procurement organizations to match transplant candidates with donated organs.
The Biden administration is now putting the network 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 Officials say their first task is to upgrade the outdated computer system that matches organs to patients; they are now seeking bidders to do that work.
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 1 in 5 kidneys from deceased donors is not used, the study said.
Critics have long argued the system is inefficient and discriminates against people of color, calling for a broad overhaul. This is not the first reform effort; 25 years ago, the Clinton administration tried its own modernization initiative.
“Every day, patients and families across the United States rely on the Organ Procurement and Transplantation Network to save the lives of their loved ones who experience organ failure,” Carole Johnson, the administrator of the Health Resources and Services Administration, or HRSA, the branch of the Department of Health and Human Services that oversees the transplant system, said in a statement.
She said the overhaul was intended to “bring greater transparency to the system and to reform and modernize” the network, adding, “The individuals and families that depend on this lifesaving work deserve no less.”
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 people and Latinos who are on dialysis are less likely to be put on transplant lists and less likely to have transplants.
The UNOS system relies on 56 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. Johnson, the HRSA administrator, said officials want to end a current practice in which members of the UNOS board sit on the Organ Procurement and Transplantation Network’s board, a panel of industry experts established by Congress to determine policies regarding organ transplantation — the same policies UNOS carries out.
“The referees and the players ought to be two different entities,” Johnson 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,” adding that elements of the Biden administration’s plan align with its own agenda.
The 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.
Tonya Ingram, a poet and health activist, was among those who have 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.”
The Senate Finance Committee has been investigating ways to improve the organ donation and transplant system. At a hearing over the summer, the executive director of Adventhealth Transplant Institute, a transplant center in Orlando, Florida, told lawmakers 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.”