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For nearly 40 years, organ transplants in the United States have been directed by a single nonprofit called the United Network for Organ Sharing — UNOS.
Critics say UNOS has come to be plagued by problems including outdated technology, wasted organs and lack of transparency.
In March, the Biden administration announced plans to break up UNOS and allow other organizations to bid on and possibly take over various functions long handled by UNOS.
PennLive discussed the potential impacts with Richard Hasz, the CEO of the Gift of Life donor program, which handles organ collection for the eastern portion of Pennsylvania, including the Harrisburg region.
A critical question: If the system is dramatically changed beginning this year, what short-term impact might it have for Pennsylvanians who have been waiting a long time, and who might be close to getting a transplant, or who might not survive any disruption or delay?
The background
Organ transplants in the United States are ultimately the responsibility of the Health Resources and Services Administration, a federal agency. HRSA contracts with UNOS to operate the transplant system.
UNOS is at the center of a system that involves about 250 organ transplant hospitals and 56 regional organizations that handle organ procurement.
It manages functions including maintaining the wait list for organs, running the computer systems that match people to available organs, and overseeing the transplant centers and organ procurement organizations.
HRSA says a goal of breaking up UNOS is “to foster competition.” HRSA would further create an independent board to oversee the entire system.
Why it matters
As of early last year, 106,000 people in the United States were waiting for an organ such as a kidney, heart, lung, liver or pancreas. About 43,000 transplants took place last year. About 20 people die every day because an organ didn’t become available.
Reasons for the shakeup
Many advocates, researchers, elected officials and patients say the system is underperforming; a U.S. Senate committee has been investigating UNOS.
The Washington Post quoted Democratic Sen. Ron Wyden of Oregon as saying: “For too long, it’s been clear that UNOS has fallen short of the requirements for this contract and the expectations of Americans waiting for a transplant.”
Republican Sen. Charles Grassley of Iowa said: “Thousands of patients are dying every year and billions of taxpayer dollars are wasted because of gross mismanagement.”
One of the most troubling criticisms involves the fact that, according to USA TODAY and others, organs are only recovered from about 1 in 4 potential donors. The waste is attributed to factors including organs lost in transit, facilities turning down organs for reasons such as deeming them too risky or because the facility isn’t sufficiently staffed, or because of potential donors not indicating desire to donate on their driver’s license.
It’s also well-established that racial minorities and poor people are less likely to receive transplants.
But UNOS also has defenders, who say it has done a good job overall and stress that the main factor working against organ transplants in the U.S. is the shortage of available organs.
Furthermore, the Biden administration proposes more than doubling the annual investment in the U.S. transplant system to a total of $67 million. Many take that as acknowledgment the system has suffered from underfunding.
UNOS, meanwhile, says it supports the shakeup and welcomes open bidding, in which it will participate. “We believe we have the experience and expertise required to best serve the nation’s patients and to help implement HRSA’s proposed initiatives,” UNOS says.
Human impact in Pa.
Philadelphia-based Gift of Life handles organ procurement for the region including the eastern half of Pennsylvania and the Harrisburg area. It’s one of the 56 regional procurement organizations contracted by UNOS. As of early 2022, about 570 people were waiting for an organ transplant in the eight counties surrounding Harrisburg.
Hasz, who became CEO last year, has worked for Gift of Life for 35 years.
The shakeup doesn’t extend to the procurement organizations, he explains. However, contracts between UNOS and the procurement organizations are renewed periodically. If Gift of Life were to perform poorly according to federal metrics, other procurement organizations could bid for the contract and potentially take over, according to Hasz.
Gift of Life has consistently been among the top performers in terms of organs recovered and transplanted in its region, he stresses.
“We’ve led the country for a long time and we’re not going to stop,” he says.
Hasz says he supports the plan outlined by HRSA, but also warns against throwing away something that can be fixed.
“I think we want to make sure as this UNOS contract goes out for bid, that we do it in a thoughtful way so that we take what’s working in the system and we keep it working. There are things to improve, but it’s not necessarily the failure that some of the press articles make it out to be,” he says.
He notes the United States has set new annual records for transplants each year for a decade, including during the pandemic. Donations went up nearly 5% in 2022.
Still, Hasz acknowledges problems, such as the fact that 26% of recovered kidneys don’t get transplanted, the result of technological shortcomings in matching patients and transporting the organs, or too much focus on transplant hospitals’ one-year survival rates.
That focus, he explains, might discourage hospitals from accepting high-risk kidneys, to the detriment of patients who might not have a good chance of surviving another year of dialysis, and would be better off with the high-risk organ.
In light of that, Hasz cites a need to “make sure that all the incentives to transplant are aligned. And I think, right now, they’re not all necessarily aligned.”
Hasz expresses confidence the pace of transplants will continue in the face of any new contracts or other changes to the system and doesn’t expect any short-term negative impact on people currently on the waitlist.
“I’m confident that we’re going to handle it in a way that will only improve the system and not put any patients at risk,” he says.
Sen. Bob Casey of Pennsylvania pointed to a recent report in The Washington Post which found that new liver transplant rules, requiring donated livers be made available to recipients far away, have mostly benefitted patients in New York and California, with some states including Pennsylvania now exporting a majority of donated livers.
“Pennsylvanians rely on lifesaving organ transplants every day and it’s critical that the Organ Procurement and Transplantation Network do everything in its power to distribute organs efficiently, equitably, and transparently,” Casey said. “I am concerned by recent reporting that found Pennsylvania has experienced a sharp decline in transplant surgeries and will continue to monitor changes to the network to ensure that Pennsylvanians waiting for transplants know they have a fair shot at getting the care they need.”
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