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Federal lawmakers hear horror stories of organ donation nonprofits, demand accountability

Cancerous organs transplanted into patients, organs left on shelves or thrown away, and even attempts to harvest organs from living patients - Those are just some of the horror stories Congressional lawmakers heard Tuesday morning as part of an ongoing inquiry into the nonprofits that are tasked with facilitating organ donations and transplants.

Those nonprofits, known as Organ Procurement Organizations or OPO’s, have faced increased scrutiny from federal lawmakers with horror stories like Heather Knuckles’ coming to light.

Knuckles’ mother died after receiving an organ tainted with cancer.

“The donor, who we now know had cancer, was somehow eligible for harvesting, and this does not make sense,” Knuckles said while testifying before the US House Ways & Means Oversight Subcommittee.

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The committee also heard testimony from whistleblower Nycki Martin, who was fired from an OPO after claiming her employer encouraged harvesting the organs of a patient who showed signs of life.

A federal investigation into that company found over the course of 89 days, there were 103 cases in which the organ donation process was initiated in error.

“What is even more frightening is that the investigation only examined cases in which the patient survived,” Martin said.

“It is shocking. It’s also, I’m gonna use a word you don’t hear very often, it’s evil,” Congressman Aaron Bean said (R-FL 4th District).

There were also allegations made during Tuesday’s hearing involving organs being stored on shelves and lavish spending by taxpayer-funded OPO’s renting limos and five-star hotels.

While the latest congressional hearing on OPO’s focused primarily on companies serving New Jersey and Kentucky, the Center for Medicare and Medicaid Services ranks OPO’s based on their donation and transplant rates.

LifeQuest Organ Recovery Services, which works with Mayo Clinic’s Transplant Center here in Jacksonville, received the lowest possible ranking in the three most recent years scores are available.

That low ranking could put the nonprofit at risk of decertification.

In September, Miami-based OPO Life Alliance Organ Recovery Agency was decertified after an investigation uncovered years of unsafe practices and chronic underperformance.

In a statement, LifeQuest told Action News Jax it has “never faced decertification”.

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“The CMS performance metrics are based on the OPOs’ performance for calendar year 2024, not the years prior, and we are confident that our performance last year will put us in either Tier 1 or Tier 2 when CMS conducts its site surveys in 2026,” LifeQuest’s Director of Donor Program Development Kathleen M. Giery said in an emailed statement.

Giery went on to highlight ways the nonprofit has worked to improve its CMS score.

“Among the measures we have taken to improve our performance include enhanced training for our staff, increased education for our hospital partners, expanded outreach to the community, and additional resources for our donor families,” Giery said. “We also have embraced many of the new technological advances, such as ex vivo organ perfusion and normothermic regional perfusion to rehabilitate organs that previously would not have been considered transplantable.”

Congressman Bean told Action News Jax more accountability is needed in the industry to improve safety, transparency and trust.

“The glimpse we saw today was not pretty,” Bean said. ”Reform is needed, and hopefully it’s gonna come sooner than later.”

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