ORGANize, a venture capital & investment banker backed group that is targeting nonprofit Organ Procurement Organizations (OPO), publicly implicated the Kentucky Organ Donor Affiliate (now part of Network for Hope) in misconduct, for following a hospital MD’s diagnosis and honoring a family’s decision to donate organs upon his death.

ORGANize has repeatedly said that the OPO came close to recovering organs from a living patient. In reality the OPO never started recovery procedures because OPOs only recover organs from patients that hospital MDs declare dead.

How has misreporting of this sensationalized incident affected patients waiting for organ donation and transplantation? Has it had any impact on the Centers for Medicare & Medicaid Services’ Final Rule for OPOs? Science in Donation and Transplantation assesses the current state of affairs: 

Much of the news media continues to report this story as if it is a settled fact, but the reporting was grossly inaccurate from the beginning. The story was that the patient had been declared brain dead after a drug overdose but woke up en route to the OR for organ recovery and said, “No”. That was the impression ORGANize co-founder Greg Segal left with members of the House Energy and Commerce oversight subcommittee last September. But Segal’s version of the story and the media’s echoing of it runs counter to what we have learned of this case from the OPO, staff, and reviewers

The patient was not a Donation after Brain Death (DBD) donor, but Donation after Circulatory Death (DCD) donor. All DCD donors are brought to the OR area for possible donation after they have been determined by the hospital’s MD to be terminal and families agree to donate organs. He was never declared “brain dead” by the medical team treating him at a local hospital.

Hear from a SID&T Advisory Board Expert:

ORGAN DONATION IS A SAFE LIFE-GIVING PROCEDURE

Read the truth on the hospital declaration of death.

Anne Murphy, MBA FACHE

          Consultant and former Chief Administrative Officer, Department of Learning Health Sciences University of Michigan Medical School, and Transplant Center Administrative Director – University of Michigan Hospitals and Health Centers

The real news on organ donation is that America’s non-profit system for procuring this life-saving gift for transplant is effective, efficient, and growing, but that growth is slowing. Sensational headlines based on shoddy reporting promoted grossly inaccurate allegations that OPOs began removing organs before the potential donor had died. This reporting that lacks medical and scientific knowledge disregards the facts, laws, and detailed case reviews are causing a decline in willing donors. Let us set the medical and scientific record straight and insist that the Centers for Medicare and Medicaid Services take note.

The misinformation exacerbates the already negative impact of the fatally flawed “Final Rule” created by CMS, which will wreak havoc when it takes effect in March 2026. At its adoption, Donate Life America estimated one of its consequences was the loss of thousands of future donations. Further, the Rule will close, “decertify,” up to two-thirds of the nation’s Organ Procurement Organizations (OPOs). Peer-reviewed data show that its faulty measures will decertify the wrong OPOs. (https://sidandt.org/the-science/peer-reviewed-scientifically, closing well-run OPOs can exacerbate the confusion over donations, making the confusion worse.)

Organ Procurement Organizations -- already defamed by ORGANize’s decade-long smear campaign and facing a chaotic future as CMS struggles to implement its unsound and draconian Final Rule – are now dealing with this poorly researched media firestorm.

Going forward, the news media, as well as Health and Human Services (HHS) officials, who are on record in their commitment to improving the system, must be more cautious before assigning blame for organ donation mishaps, making it clear that:

Federal law excludes OPOs from being involved in the declaration of death or in any medical treatment of a patient. The Uniform Anatomical Gift Act, adopted by all fifty states and the District of Columbia, makes sure that OPOs have absolutely nothing to do with the headline allegations.

●       OPO transplant teams do not dictate withdrawal of care nor declaration of death.

●       There is a mandatory waiting period after the declaration.

●       Physician misdiagnoses can happen. OPO personnel can catch them, but not cause them.

●       Organ donation stops as soon as a hospital’s physicians change the patient’s prognosis.

●       In the unheard circumstance of organs potentially recovered from a person not declared dead by a physician, participants would have a duty to report it to local authorities, who would treat it as a crime. This has never happened.

The fifty-five federally regulated nonprofits that run organ donation in their service areas face a chaotic future that puts patients at risk. As OPOs deliver the critical life-saving link between donors, surgeons, and patients, they must deal with the impact of a media firestorm wrongfully pushing the public’s greatest fear: organs removed before a patient is dead. 

National news outlets have made poorly researched allegations, alarming selfless and generous people who have responded by pulling themselves off their state donor registries in droves.

The news sounds terrifying, but is it true? No.

A  recent op-ed in Undark, signed by a trio of organ transplantation leaders, argues that by “suggesting that some U.S. patients had nearly been killed for their organs,” the media’s coverage has “confused some of the fundamental issues involved” in the cases they reported on. False and sensationalized reporting is the primary reason thousands of people removed themselves from organ registries in 2025. Those removals impact the hopeful patients on transplant waiting lists.

Jedediah Lewis, head of the nonprofit Organ Preservation Alliance, joined by Hedi Aguiar, R.N., M.S.N., and Adam Schiavi, Ph.D., M.D., wrote in Undark: “Organ donation is complex. Much of the recent reporting has misled and unnecessarily alarmed the public.” They added that the disturbing news coverage “mostly alleges mistakes made during the underlying process of (physicians) withdrawing life-sustaining treatment and not the organ donation process itself. In other words, the alleged errors would have happened whether the patient was an organ donor or not.”

A significant news source told a story to shock readers with its depiction of an OPO surgeon cutting into a living person. The stubborn fact remains: OPO recovery teams never touch the deceased donor without the hospital doctor’s independent declaration of death. That doctor’s declaration might have been premature, but it was caught by the OPO and hospital team who stopped the donation case. It is illogical, and plainly factually wrong, to blame the OPO team, which made the observations of the patient’s movements that the doctors missed, and acted responsibly in ending the organ donation process.

We applaud HHS’ announcement that it would require OPOs to appoint officers to monitor patient safety events in real-time, including both medical and procedural incidents that occur during organ donation, recovery, and placement processes. When an incident occurs, the OPO’s patient safety officer will lead a “root cause analysis” to determine what led to the event. The goal is to identify systemic issues and prevent them from happening again.

Safeguards have always been in place. All concerned have a moral responsibility to encourage donation for the sake of others, placing responsibility for reform on systemic safety issues. The OPOs and HHS are making an important statement that safety, not numbers, is the priority for OPOs and physicians.

No matter how zealous a given OPO’s team might be about securing organs from a potential donor, until they are declared dead, they are bystanders, working behind the scenes to be ready in the event organ donation can happen and patients on the transplant waiting list can be helped. In turn, the hospital’s medical team is completely focused on achieving the best possible outcome for their patient, who remains their patient as long as they are alive.

A 2019 survey found that organ donation and transplantation enjoyed 90% approval from the American public, a rarified level of support shared only with the National Park System, seatbelts and police being forced to wear body cameras. 2019 was also the year of the first successful adult heart transplant using a DCD donor, a development that was broadly welcomed because of the potential to “expand the donor pool, resulting in increased transplant volume and decreased waitlist times,” according to a paper published by the American College of Cardiology.

But now, organ donation and transplantation are on the defensive. In the wake of the sensationalized Kentucky stories, HHS Secretary Robert F. Kennedy Jr. demanded an overhaul of organ donation and transplantation, saying “the entire system must be fixed to ensure that every potential donor’s life is treated with the sanctity it deserves.”

The worst outcome from ORGANize’s successful disinformation campaign is what the Association of Organ Procurement Organizations (AOPO) now reports: Thousands of Americans who had registered as organ donors have removed themselves from the list. AOPO also reported that the pace of transplantation had slowed, putting the nation’s streak of setting a new record for transplants every year at risk

At the time of the subcommittee hearing, the Final Rule appeared to be in trouble. Every few weeks through the summer of 2024, the scientific community published a new paper showing the Final Rule was based on marginal data that would produce biased and unreliable results while forcing up to 70% of OPOs to close. Things got so bad for the Final Rule’s reputation that HRSA forced academics to take down six papers critiquing it from the American Transplant Conference, leading to accusations of “censorship.”

But now, a year later, the media and Congress are only focused on the fallout from the still-unresolved Kentucky story. More papers have been published showing the Final Rule’s fatal flaws, but the media prefers the horror fiction of a man waking up as his organs are being removed.

ORGANize distorts how DCD donations are conducted to make the process appear to be a threat to patients. But it has come at a steep cost in the public’s lost faith in the system. The list of those who need organs continues to grow, but unless the de-registration trend is reversed, there will be fewer organs available when they are most needed. ORGANize’s disinformation costs patients their lives.

Science in Donation and Transplant has known for years that ORGANize was reckless and willing to bend the truth to advance its agenda. But this episode has shown its callousness – throwing patients under the bus for the sake of their PR strategy. It will take years to undo the damage.