Exclusive: Organ transplant network oversight stalled due to shutdown

• The nonprofit manages most network functions under a government contract.

State of play: The organ donation and transplant network has had to stop some monitoring of transplant and donation outcomes and the impact of new policies, UNOS told Axios.

• An Oct. 2 document from HHS viewed by Axios says the network can only continue support for critical patient safety work during the shutdown, along with work on lawsuits and fee collection that doesn't require government input.
• Permitted work includes matching and allocating organs; IT support; continued communication with patients on waitlists and addressing life-threatening risks, the document says.
• The network should contact the HHS Health Resources and Services Administration to figure out how to handle patient safety issues not outlined in the document, it says.
• "Other than these tasks, work under the contract cannot be performed during the lapse in appropriations," the document says.

More than 90 staff members at UNOS, about 25% of the organization, have been furloughed due to the shutdown.

• "As a private, non-profit organization, UNOS is not in a position to continue funding the salaries of employees whose roles are primarily tied to the [Organ Procurement and Transplantation Network] when the government has indicated it will not cover those costs," the organization said in a statement.
• The federal government also owes UNOS more than $10 million for work already completed dating back to 2024, the organization said.

The other side: A senior White House official disputed UNOS' characterization that it has to stop important organ donation network activities while the government is shut down.

• HHS told Axios that risk monitoring and essential functions of the network should continue without interruption.
• Activities related to out-of-sequence organ allocations and other concerns can continue with specific approval from HRSA, per the agency.
• "During the Democrat-led shutdown, HRSA is only working on activities related to patient safety and on-going operations of the organ matching system," HHS press secretary Emily Hilliard said in a statement to Axios.
• "Patients will not have any disruption in their ability to donate organs, be added to the waitlist, or access an organ transplant."

Yes, but: The network wasn't significantly affected by past government shutdowns, since most of the funding comes from registration fees paid by hospitals when they list a patient on the transplant waitlist, UNOS said.

• HHS did not answer Axios' questions on why the Trump administration sent a notice ordering work stopped this time.

The intrigue: Health Secretary Robert F. Kennedy Jr. has prioritized organ transplant system safety, taking action last month to bar one affiliate that distributed donated organs due to safety and performance concerns.

• Bipartisan scrutiny of the organ transplant system has been building for years.

Zoom out: The shutdown also means that HHS can't pursue new government contracts — but the UNOS contract expires Dec. 29.

• UNOS was the sole organization handling the distribution of donated organs for about 40 years. Congress in 2023 passed a bipartisan bill to increase competition for contracts to run the system, following a Senate probe that found significant failures.
• HHS has since awarded contracts to other organizations to manage the board of directors and handle the patient helpline. But other functions are still managed by UNOS, with no contingencies for what happens if the current contract runs out.
• The furloughs of employees who run the day-to-day operations of the organ transplant network and the impending contract expiration "creates an uncertain and untenable environment for donation and transplant," UNOS said.