The US organ transplant system is outdated – and costing lives. An overhaul is underway.
In the United States, about 20 people die every day waiting for an organ transplant. Patients sometimes wait years for a match. Many others, disproportionately those of color, never even get placed on the waitlist.
And too often, organs go to waste.
This week, the Biden administration announced plans to overhaul the network that runs the U.S. organ transplant system, which experts say fails patients of color most.
The Health Resources and Services Administration said Wednesday the changes are part of an effort to “modernize” the network’s system – which experts have called a monopoly. The agency called on Congress to double funding for transplant oversight to $67 million.
For nearly 40 years, the federal government has contracted the nonprofit United Network for Organ Sharing, UNOS, to run the national digital database that matches organs with patients. UNOS oversees organ retrieval and delivery and sets policies for how organs are distributed and which patients are prioritized.
HRSA, under the U.S. Department of Health and Human Services, now wants to divide those duties among different entities and update the database system used.
At any given time, 100,000 patients are on the waiting list. And while 42,000 transplants were performed last year, organs are generally recovered from only about 1 in 4 potential donors. On average, 6,000 people die each year waiting for a transplant.
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Critics have long called for changes to the system. The plans come a year after a scientific advisory panel urged a revamp and two years after the Senate Finance Committee began to investigate UNOS, its oversight of the U.S. Organ Procurement Network, and organ procurement organizations.
Though transplant experts welcome reforms to improve the antiquated system, they said, HRSA's plans are somewhat vague. More concrete plans are needed to prevent organs from going to waste, they said, and improve access for poor patients and those of color, who are less likely toget on a transplant list and receive a lifesaving transplant.
“Every day that we wait for reform is a life that's lost,” said nephrologist and transplantation expert Dr. Sylvia Rosas, board president of the National Kidney Foundation. “We've been advocating for these changes for years.”
How does the organ transplant system work?
To get on the waitlist, patients must first be referred by a physician to a transplant center at a hospital. The team there then determines whether a patient is eligible as a transplant candidate, and if so, places them on the transplant list.
When an organ becomes available, a local organ procurement organization sends medical information to UNOS. The online UNOS platform then uses algorithms, donor and candidate information to generate a list of matches ranked by compatibility, need and geographic location. The organ is then offered to the transplant hospital with which the best-matched patient is linked. If the hospital refuses the organ, it's offered to the next patient.
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What changes are planned?
HRSA's changes are focused on improving and modernizing the IT system UNOS uses. That includes updating the database dashboards, which detail data on organ retrieval and transplants. The agency also launched a more user-friendly website for patients and families.
HRSA also said it plans to solicit more contracts to have more organizations involved, with a goal to "strengthen accountability."
“They propose to have a more active competition for what has essentially been a 30- or 40-year monopoly,” said transplantation expert Dr. Andrew MacGregor Cameron, surgeon-in-chief at Johns Hopkins Hospital. “That is potentially positive. We'll all have to wait together and see if there is significant change.”
In a statement, UNOS said it’s committed to working with HRSA to carry out the reforms and share a goal to help as many people as possible "while increasing accountability, transparency and oversight."
“We believe we have the experience and expertise required to best serve the nation’s patients and to help implement HRSA’s proposed initiatives," the agency said in a statement.
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Problems with the system
Experts say HRSA’s plan doesn’t directly address how it would improve organ availability and efficient delivery, which are key to improve access and fairness.
“We’re all excited about the possibility for system reform," Cameron said. But "the rate-limiting factor here is ... lack of available organs."
The plan to increase competition and more oversight of organ procurement organizations is "appropriate, but will not be the game changer that patients on the waitlist need," he said.
The Senate Finance Committee has been investigating the network and UNOS since 2020.
Last August, the committee released its report concluding that 28,000 more organs could be transplanted every year if regulations were reformed and organ procurement organizations were held accountable. Experts estimated it could save up to $40 billion over the next decade.
The report also found the network's failures in oversight caused risks to patient safety, testing procedure errors, and transportation problems that resulted in "lifesaving organs being lost or destroyed in transit."
And ultimately, the investigation found, UNOS didn't have the technical expertise to update the network's IT system, which could result in technical interruption or failure that could harm patients.
“The system is, I would say – old,” said Rosas, of the National Kidney Foundation. “We need a better transport system.”
Rosas hopes changes will increase transparency and tracking. Sometimes, Rosas said, patients aren’t even aware they were offered a transplant or were rejected.
“We want to be the best transplant allocation system, have the least amount of waste, be able to utilize this precious gift that the donor and the donors' families are giving to our patients," she said. "It needs to be treated as the precious gift."
The announcement this week also comes on the heels of a Washington Post analysis that found large numbers of livers are going to waste after UNOS implemented a policy in 2020 that prioritized the sickest patients no matter their location, jeopardizing patients in areas that already lacked health care access.
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Organ transplant system disproportionately harms patients of color, experts say
The Senate Finance Committee report also highlighted disparities in the organ transplant network, concluding, "This problem is even more acute for people of color and people in rural communities."
People of color make up 60% of the waitlist, but only about 35% of all donated organs are from nonwhite patients. While organs are not matched based on race and ethnicity, organs from donors of similar ethnic backgrounds are more likely to be a medical match for a patient.
Moreover, a white person on the waitlist has about a 50% chance of getting a transplant each year. A Black patient has a 25% chance.
People of color and those with disabilities face disadvantages in getting transplants, referrals and wait longer, according to a panel of scientists from the renowned National Academies of Sciences, Engineering and Medicine, which detailed an analysis of the system in a report last year that urged an overhaul.
Black patients, for example, are four times as likely to develop kidney failure, yet they are less likely to be referred for kidney transplants and less likely to be placed on the waiting list.
“Any change will help everybody on the list, but would help individuals of color hopefully get a transplant sooner than they're getting now," Rosas said.
But the solutions to correct that inequity, Cameron said, "are not yet evident" in HRSA's plan.
“Underrepresented, minoritized communities suffer disproportionately on transplant waiting lists. Reforms will have to take into account those realities in our current system,” Cameron said. “I am ever optimistic that it will be the patients that benefit from reform. If not, we haven't done it correctly."
Contributing: The Associated Press
Reach Nada Hassanein at firstname.lastname@example.org or on Twitter @nhassanein_.
This article originally appeared on USA TODAY: Organ transplant system overhaul: What it means and who will benefit