Home / The Issues / The Impact of ORGANize’s Fear – Mongering on Patients’ Lives

The Impact of ORGANize’s Fear – Mongering on Patients’ Lives

Billionaire activists gained influence over federal regulation of organ donation and transplantation by callously undermining the public’s faith in the system.

ORGANize’s latest disinformation campaign falsely accuses Organ Procurement Agencies of being in such a hurry to obtain organs that they began removing them from patients still showing signs of life.

When spinning ORGANize’s tales about organ donors who are still alive, national news outlets consistently leave out a key fact: OPOs don’t touch a patient until physicians make a declaration of death.

SID&T Advisory Board expert Anne Murphy sets the records straight on OPO’s role in organ transplantation

“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:

• 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.”

While the Centers for Medicare and Medicaid Services (CMS) stubbornly clings to the Final Rule despite extensive scholarship showing its how its flaws threaten the system’s stability, ORGANize has continued to fire missiles at OPOs through its Washington DC media and political contacts, evidently hoping to create enough doubts about the network of regional nonprofits that the public might eventually agree that a regulation that results in closing more than half of them is in the public interest.

Greg Segal, a source recognized throughout the news media, was given a prominent platform to tell a story designed to shock readers with its depiction of an OPO surgeon cutting into a living person. Sensational headlines based on shoddy reporting of Segal’s claims promoted grossly inaccurate allegations that OPOs began removing organs before a potential donor had died.

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 shows that its faulty measures will decertify the wrong OPOs. (https://sidandt.org/the-science/peer-reviewed-science). CMS shows little concern about the potential loss of successful OPOs to its regulatory scheme. But losing well-run OPOs can exacerbate 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. Reporters should be reminded 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, i.e. the premature declaration of death.

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. 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: “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.”

The field of organ transplantation 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.

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