By: Skylar Laird – August 13, 2025 8:30 am
COLUMBIA — More than 300 South Carolinians donated organs last year. Under a federal rule newly set for enforcement, the nonprofit that coordinates transplants across most of the state could fold, putting lives in the hands of out-of-state coordinators, the group’s leaders said.
We Are Sharing Hope SC ranks among the lowest-performing organ procurement organizations in the country under the 2022 rule, which was meant to ensure as many viable organs as possible are transplanted.
But the rating is an unfair measure in a state where so many people lack health care, said David DeStefano, the nonprofit’s president.
If federal regulators shut down the organization — Sharing Hope for short — nonprofits from other states would be able to make their case to the federal government as to why they should take over South Carolina’s organ donations, a role that involves talking to families, getting donors to transplant centers and finding hospitals with patients able to receive the donated organs.
According to the federal agency responsible for the new rule, the change is a way of pushing organ procurement organizations to do better after years of little oversight and no competition. If a procurement organization isn’t meeting federal standards, then another should come in and make changes, according to Centers for Medicare and Medicaid Services.
But replacing Sharing Hope and its 100 employees won’t solve the problems the state-specific nonprofit is facing. It could instead cause disruptions in the system, potentially leading to fewer people deciding to donate, DeStefano said.
Sharing Hope’s federal contract covers all but two of the state’s counties. Donations from Edgefield and Aiken counties are handled by LifeLink Georgia. They are among 56 such nonprofits nationwide.
“I can imagine few things worse than having an (organ procurement organization) from out of this state who doesn’t understand the intricacies, the subtleties, the culture, the people, the environment, trying to run something as intimate and personal as end-of-life donation,” DeStefano said.
More than organs
Sharing Hope was there as soon as 4-year-old Bo Worthy’s parents decided they wanted to donate his organs.
Bo Worthy, an organ donor who died in July 2025, with a favorite blanket. (Provided/Rainee Brewer)
Worthy, an autistic child who loved blankets and had recently started speaking, drowned last month after climbing into the family pool.
His parents found him unresponsive and rushed him to the hospital, where he was declared brain dead, said Rainee Brewer, Worthy’s second cousin and the family’s designated spokesperson.
Sharing Hope representatives explained the process to Worthy’s parents, answered their questions and stayed in the hospital room as long as possible to make sure the grieving family had everything they needed, Brewer said.
When Worthy’s family decided to hold a “donor walk,” which generally involves friends and family walking a person from the hospital room to the operating room, Sharing Hope helped organize it. In Worthy’s case, more than 300 people showed up to give him a sendoff. So Sharing Hope employees fit them all in the hospital’s hallways to greet Worthy’s hospital bed as it wheeled past, Brewer said.
A Sharing Hope representative even drove to Bojangles restaurants in search of signs printed with the company’s slogan, “It’s Bo Time,” which had become a common saying among the family.
“I felt like (Sharing Hope) really got us through one of the toughest and hardest weeks of our lives,” Brewer said. “I don’t know if we would have actually been able to do that without them.”
That work represents the procurement organization’s central mission, DeStefano said.
The ultimate goal, of course, is for the organs donated to end up with a patient in need, but the procurement organization also plays a major role in guiding families through the donation process and coordinating with hospitals to be sure the organ arrives safely, he said.
He worries whether a nonprofit from another state would have that same touch for the people it serves, or the relationships with hospitals to meet those sorts of requests.
“We are kind of the conduit to that process,” DeStefano said.
‘A foggy lens’
An estimated 4,100 people nationally die each year while waiting for an organ transplant, according to the federal Health Resources and Services Administration. At the same time, 28,000 organs that might have helped those people and others went unused, a 2017 study found.
Part of the problem was that organ procurement organizations falling below national standards had little reason to improve. The organizations operate “essentially as government-granted monopolies,” with little punishment for failing to meet standards and no competition to encourage better numbers, the study found.
Encouraging the nonprofits to pursue “every organ, every time,” as the study put it, was the main goal behind changing the way in which procurement organizations are judged, according to the rule. Under the change, regulators judge the organizations on how many potential donors had at least one organ transplanted, as well as how many organs set for donation successfully went to a recipient. The calculations are based on death certificates.
But DeStefano said those metrics fail to capture the complicated reality of organ donation.
“We need improvement,” DeStefano said. “We need transparency. We need all of us to continue to get better. But we need to do it the right way.”
The pool of potential organ donors starts out small, with about 3 in every 1,000 deaths qualifying for donation, according to the Heath Resources and Services Administration.
A person’s age, health and manner of death — including whether they died in the hospital — all matter for the viability of their organs, said Dr. Tim Whelan, a lung transplant surgeon and medical advisor for Sharing Hope. Any person under the age of 75 who dies of heart failure, a loss of blood flow to the brain, or a cause unrelated to their own health — such as a drug overdose, suicide or drowning — counts as a potential donor under the new rule.
That puts an aging, unhealthy, rural state such as South Carolina at a disadvantage, DeStefano and Whelan said.
Last year in South Carolina, 1,141 deceased patients either registered ahead of their deaths or had family members agree to donation. Sharing Hope transplanted organs from 305 people, about one-quarter of the total possible, according to the nonprofit’s annual report.
A transplant center might reject a patient’s organs for any number of reasons, Whelan said.
Patients may die of a heart attack, making them a potential donor. But if they die far from a hospital, their organs deteriorate before they can be donated. Patients may have a medical condition not listed on their death certificate that disqualifies them from donating. And patients without access to health care may die with an undetected or untreated disease that wreaked havoc on their organs to the point they’re no longer viable.
All of those cases would count against Sharing Hope, even if the reasoning was out of the nonprofit’s control, Whelan and DeStefano said.
“That’s been one of my great frustrations, is we are a great organization that’s not getting the credit because we’re looked at through a foggy lens,” DeStefano said.
The changes are not meant to hurt procurement organizations but “to ensure that donated organs are not wasted and reach those waiting for a lifesaving organ transplant,” the rule reads.
The number of donors has gone up in the years since the rule went into effect. In 2021, 24 of the nation’s 56 organ procurement nonprofits fell into the lowest of three performance tiers. By 2023, the most recent data available, that had dropped to 10.
Sharing Hope is one of those 10.
These 10 organ procurement organizations are at risk of losing certification:
- Arkansas Regional Organ Recovery Agency
- Life Alliance Organ Recovery Agency (Florida)
- Louisiana Organ Procurement Agency
- The Living Legacy Foundation of Maryland
- New Mexico Donor Services
- LifeLink of Puerto Rico
- We Are Sharing Hope SC
- Mid-South Transplant Foundation (Arkansas, Mississippi and Tennessee)
- Texas Organ Sharing Alliance
- LifeNet Health (Maryland, North Carolina and Virginia)
Source: Centers for Medicare and Medicaid Services
“It is our goal to ensure that (organ procurement organizations) are held to a high level of performance expectations and that all (procurement organizations) are pushed to perform better,” the rule reads.
What happens next
What Sharing Hope really needs is more donors.
During a review of its 2023 transplants, regulators determined that 46 more donors would be the difference between automatically losing certification and being able to make its case for remaining in charge of the state’s donations, according to federal data.
Last year, Sharing Hope received organs from 305 donors living and dead, the most in its history. Whether the nonprofit will reach the threshold to keep operating next year is unclear. Whelan was optimistic that the organization had improved enough to make the cut, while DeStefano remained unsure.
The nonprofit’s leaders are wary of putting too much pressure on families to donate in order to satisfy federal regulators. By design, organ procurement organizations are not meant to face the same performance pressures as hospitals so that families feel more freedom to make their own decisions, DeStefano said.
Coordinators could also try to be more selective about donors in an effort to bolster the ratio of organs the nonprofit successfully transplants, but that could mean missing out on a one-in-a-million match that doesn’t necessarily look good on paper, Whelan said.
For instance, Sharing Hope usually avoids transplanting smokers’ lungs, but every once in a while, one fits a patient who has otherwise been difficult to match, he said. If that lung worked out, it could save a person’s life. If it didn’t, that would ding the nonprofit’s score with federal regulators, Whelan said.
Short of changing the way organ donations are measured, giving the nonprofit more resources could be a better way of improving its numbers than trying to start over completely, Whelan and DeStefano said. Over the years, the nonprofit’s staff has built relationships with hospitals, which a new organization would have to rebuild, Whelan said.
Organ donation is such a personal decision, he worries bringing in a new organization could fracture people’s trust in the system, leading in turn to fewer organ donations, he said.
“The goal really should be to try to give us the tools to improve on those metrics,” Whelan said.
Sharing Hope’s work goes far beyond the hospital or the transplant center. After Worthy’s donation, staff members sent his parents letters to tell them where his heart, liver, kidneys and pancreas ended up.
Worthy’s heart continues to beat in a 9-month-old baby, Brewer said.
“That child has life because of Bo,” Brewer said. “That in itself is a beautiful thing.”
See the full article here.