The Group That Governs U.S. Transplant Policies Voted to Require Testing of At-Risk Organ Donors for Chagas Disease

by Caroline Chen

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The organization that governs U.S. organ transplant policies voted unanimously on Monday to require that donors be tested for a parasitic disease called Chagas.

Last week, ProPublica reported on the death of Bob Naedele, a former police detective from Connecticut who died in 2018 after receiving an infected heart; his death could have been prevented if the donor had been tested for Chagas. The policy change comes after years of recommendations from experts for screening to prevent such deaths.

The new policy, passed by board members of the Organ Procurement and Transplantation Network, will require the groups that recover organs in the U.S. to test the blood of donors born in countries where Chagas disease is prevalent, including Mexico and 20 nations in South and Central America. To be implemented, the policy will need to be approved by the federal Office of Management and Budget.

“My family and I are elated hearing about the policy change,” said Cheryl Naedele, Bob’s wife. “Ensuring no heart recipient will ever have to suffer the ravages of Chagas has been our passion since Bob’s passing.”

Test results will not have to be provided to patients and their medical team before transplant. That means that patients potentially could find out after their transplant that they had received an infected organ — and not have a chance to weigh the risks of a worse outcome.

The Organ Procurement and Transplantation Network committee that drafted the proposal originally planned to require testing to be completed before a transplant. But “many commenters were concerned that the lack of availability of testing and time it takes to get test results could lead to” delays or wasted organs, spokesperson Anne Paschke said, so the committee removed the pre-transplant requirement.

Experts said that any testing requirement can still improve outcomes even if results arrive after a transplant because medical teams could begin treating an infection promptly, rather than discovering the disease after symptoms appear. Treatment for Chagas disease is available, but it’s not always successful in transplant recipients because their immune system needs to be suppressed so their body will not reject the new organ.

In Bob Naedele’s case, his diagnosis took weeks and came too late, after the parasite had invaded his nervous system and brain. He died seven months after what had initially appeared to be a successful transplant.

This content originally appeared on Articles and Investigations - ProPublica and was authored by by Caroline Chen.