HHS shutting down Kentucky organ procurement group over safety concerns

By Jen Christensen, CNN

(CNN) — The federal government is moving to shut down the organization that manages organ donations in the Kentucky region, US Health and Human Services Secretary Robert Kennedy Jr. announced Wednesday, calling the organization a “bad apple.”

“When an organization entrusted with the gift of life repeatedly puts patients at risk, the federal government has the duty to act, and that’s why we’re acting today,” Kennedy said at a news conference in Lexington.

The group, Louisville-based Network for Hope, said Wednesday that it “strongly disagrees” with the move and will appeal.

Network for Hope has been under federal scrutiny for more than a year, since a whistleblower who worked with an earlier version of the nonprofit told Congress about a case in which staff started to harvest a man’s organs before he was actually dead.

CNN was the first national news organization to speak with the man, TJ Hoover, who survived that experience.

In 2021, Hoover overdosed and was taken to the hospital in cardiac arrest. After being unresponsive for several days, he woke up on the operating table as his chest was being shaved and his body bathed in surgical solution, and he heard staff discussing how they would take his organs, Hoover told his sister. A doctor finally called off the surgery, and Hoover was not operated on.

Earlier in the day, hospital staff had expressed concern that Hoover seemed aware of what was happening and was resisting the procedure, but the organ procurement organization kept “pushing, pushing, pushing to go,” Natasha Miller, a perfusionist who worked with the group at the time, told CNN. The family says they also had not been told that Hoover had regained consciousness and had cried while his body was being prepared.

Hoover now lives with his sister in Richmond, Kentucky, and is undergoing extensive physical therapy and treatment, much of which they share on TikTok in an effort to inspire others.

At the time Hoover’s case came to light, Network for Hope said it had reviewed the case and “remains confident that accepted practices and approved protocols were followed.” It also said the case had been “inaccurately represented,” including by “individuals never involved with this case.”

Hoover and his sister, Donna Rhorer, attended the HHS news conference Wednesday.

“TJ, we are grateful that you’re here, and we’re grateful to those physicians who had the courage to do the right thing,” Kennedy told them. “TJ’s story is a powerful reminder that every safeguard exists for a reason.

“Most organ procurement organizations carry out this work with professional compassion, deep respect for both donors and recipients. Network for Hope repeatedly failed to meet those standards,” he added.

Network for Hope was created in 2024 through the merger of Kentucky Organ Donor Affiliates with LifeCenter Organ Donor Network.

Last year, an investigation by the Health Resources and Services Administration into Hoover’s case and other suspected problems with Kentucky Organ Donor Affiliates found that of the 351 cases it examined in which organ donation was authorized but ultimately not completed, more than 100 had “concerning features,” including 73 patients with neurological signs that were incompatible with organ donation.

Evidence pointed to poor neurological assessments, a lack of coordination with medical teams, questionable consent practices and misclassification of causes of death, according to HHS.

Network for Hope said at the time that it was “fully committed to transparency” and was in full compliance with all requirements of the Centers for Medicare & Medicaid Services, which regulates organ donation organizations. “Our goal has always been and will remain to meet the highest ethical and medical standards in donation and transplantation.”

HHS ordered Network for Hope to do its own investigation and asked the Organ Procurement and Transplantation Network (OPTN), the private organization that oversees transplants in the US alongside HHS, to figure out why there were so many problems.

“Despite intensive oversight, ongoing monitoring by the OPTN and repeated opportunities for improvement, significant patient safety concerns remained,” Thomas Engels, administrator of the Health Resources and Services Administration, said Wednesday. “I want to emphasize, even though the action that the secretary is announcing today, care will still be offered to the patients that are served by this organization.”

Network for Hope CEO Barry Massa said Wednesday that the group “is compliant with all OPTN policies. … Under HRSA’s oversight, organ donation went down for the first time in 14 years. As a result, more than 3,000 people waiting for a life-saving organ transplant will be negatively impacted by the decision announced today.”

Network for Hope is one of 55 nonprofit organ procurement organizations (OPOs) that manage the logistical part of the United States’ organ donation system. The organization coordinated organ donations for nearly 7 million people, covering the entire commonwealth of Kentucky as well as counties in southern Indiana, Ohio and West Virginia. It’s the nation’s 16th largest, according to its website, with more than 300 employees.

Organ donations in the US are directly managed by OPOs, nonprofits that deploy staff to local hospitals. Those staff help determine whether organs are viable for transplant, make matches between donors and recipients, work directly with families of the deceased and manage the physical transfer of organs to the recipient.

OPOs have come under strict scrutiny in recent years amid accusations that they haven’t provided the kind of care expected of such organizations. Trust in such networks is key, experts say, because the nation’s organ donation system relies on volunteer donors who often sign up when they are applying for a driver’s license.

As of 2022, about 170 million people in the US have signed up to donate their organs, but there is always more demand than there are organs available, and less than 1% of donors end up meeting the specific medical criteria to actually donate.

Last year, there were more than 48,000 transplants in the US, but more than 103,000 people were on waiting lists, with another person being added to the list every 8 minutes. About 17 people in the United States die every day waiting for a transplant, according to the Health Resources and Services Administration.

There have been several federal investigations into the country’s organ donation system, but there has been little action to remedy the problems, according to a Government Accountability Office report published in January.

A federal investigation found that mismanagement in the donor system can sometimes result in organs being thrown away, being mishandled or even going missing. About 28,000 donated organs go unused because of inefficiencies in the system, according to the Centers for Medicare & Medicaid Services.

An investigation by the House Ways and Means Committee found fraud, waste and abuse in the OPO system in general, including “questionable” and “troubling” practices such as interfering with the decision to declare someone dead. A death declaration is the sole responsibility of the hospital caring for the patient, not the organization that procures the person’s organs.

In September, HHS moved to shut down another OPO that managed organ donations in the Miami area. An investigation found that Life Alliance Group, an organization working with the University of Miami, had problems with chronic understaffing, safety concerns and underperformance that HHS said resulted in the loss of several opportunities to harvest organs from viable donors.

At the time, Kennedy directed all OPOs to have an Organ Procurement and Transplantation Network patient safety officer to oversee patient safety so any events could be investigated in real time.

Kentucky passed its own organ transplant safety law, which went into effect in July, allowing any staff involved in the transplant process to stop the procedure if they have questions or concerns. The law also clarifies that donor consent to having organs harvested must be properly documented, and it spells out that a patient must be formally declared dead before their organs can be removed.

Rhorer said at the news conference Wednesday that when the hospital sent her brother home, they told her to make him comfortable because he wouldn’t live long – but that was five years ago.

“We’re barely scraping by. My life is taking care of my brother, and it wears me out sometimes. But this isn’t just about TJ. Families deserve confidence that every patient is treated safely and every safeguard is followed,” she said.

“If we don’t act, this will happen again,” she added. “I will keep fighting until the people responsible are held accountable so no other family has to live what we’re living here.”

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