Transplant Advocates: Campaign of Misinformation Causing Drop in Registered Organ Donors and Threatening Lives of Patients

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Association of Organ Procurement Organizations

Oct 03, 2024, 11:56 ET

In an open letter, more than 1,100 organ donation and transplant professionals, physicians, patients, and donor families decry harmful narratives propagated during Congressional hearing and in media; say misinformation causing drop in Americans registering as donors

MCLEAN, Va., Oct. 3, 2024 /PRNewswire/ -- The Association of Organ Procurement Organizations (AOPO) today announced that more than 1,100 professionals in organ donation and transplant, along with physicians, patients, and donor families, have signed an open letter denouncing an ongoing campaign of misinformation that is eroding public trust in organ donation and threatening the lives of patients awaiting transplants.

The open letter warns that national data from Donate Life America (DLA) already demonstrates a decline in the number of Americans registering as organ donors, a trend seen in 80 percent of states consistently reporting state donor registry data to DLA over the past three years.

"For over five years, our nation's organ procurement organizations (OPOs) - the non-profit, community-based organizations that work with grieving families every day to save lives through transplantation - have been subject to malicious misinformation and defamatory attacks based on hearsay, creating a false narrative that donation and transplant in the U.S. is untrustworthy and broken," the letter reads. "Ignored is the fact that there has been 13 years of consistent growth in organ donation by OPOs, leading to a record 43,000 organs transplanted and lives saved through deceased donation last year."

The letter was written following a Congressional hearing on September 11 by the House Energy and Commerce Committee's Oversight and Investigations Subcommittee, during which members of a witness panel made unsubstantiated accusations that OPOs hasten death in order to procure organs and attempt to recover organs before donors have died.

These unsubstantiated claims misrepresent the role of OPOs, as the responsibility for end-of-life care decisions and declaration of death lies only with an independent hospital team, and well before organ donation can take place. The subcommittee did not invite any representatives from the OPO community to testify and clarify these serious claims about the donation process.

Other misinformation propagated during the hearing included another unsubstantiated claim by a member of the witness panel that OPO executives are 'directing staff to deprioritize Black patients.'

Equity is a top priority for OPOs, and they pursue all potential donors referred by hospitals, regardless of race. A recent study shows racial equity in family approach rates by OPOs among patients who were medically suitable for organ donation. OPOs work diligently to dispel myths and misconceptions about organ donation, particularly in communities of color, to increase donation rates. False claims like this hinder progress.

"Our organ donation and transplant system is powered entirely by trust, and the American public should feel confident when they register as donors that their gifts will be respected and honored," said Dorrie Dils, President of AOPO. "This constant barrage of misinformation has gone on too long, and the hearing was the tipping point."

"OPO professionals dedicate their lives to helping donor families on their darkest days find some light through organ donation. Their dedication is central to the enormous success of our donation and transplant system, which has saved millions of American lives," Dils said. "We urge Congress, the media, and the public to protect the lives of patients who are desperately waiting for an organ donation today by rejecting the baseless and reckless claims that tear down our system rather than build it up. We stand ready to correct misinformation and share the facts about the life-saving impact of organ donation."

To read the full letter, please click here.

About the Association of Organ Procurement Organizations (AOPO)
The Association of Organ Procurement Organizations (AOPO) is the not-for-profit trade association leading the nation's organ donation community to save and improve lives through organ, eye, and tissue donation. Founded in 1984, AOPO advances organ donation and transplantation by driving continual improvement of the donation process, collaborating with stakeholders, and sharing successful practices with its 48 member OPOs. AOPO envisions a future where every opportunity for donation results in lives saved. For more information, please visit www.aopo.org.

Media Contact: Jenny Daigle, [email protected]

SOURCE Association of Organ Procurement Organizations