UNOS' updates from the Dec. 2 Ways and Means Oversight hearing
Today – Tuesday, December 2, 2025 – the House Ways and Means Oversight Subcommittee is hosting a hearing titled, “Lives at Stake: Holding Tax-Exempt Organ Procurement Organizations Accountable.”
UNOS will use this space to fact-check any witness statements that require correction or clarification.
Witnesses are:
- Heather Knuckles, family member of organ donation recipient, resident of Missouri
- Nyckolleta (Nycki) Martin, whistleblower, former OPO employee
- Jennifer Erickson, senior fellow for organ donation policy, Federation of American Scientists
- Emily Gee, senior vice president, economic policy; senior fellow, health policy, American progress
11:18 a.m.
Statement by Jennifer Erickson: “UNOS itself has retaliated against patient advocates … (and) UNOS threatened witnesses testifying under oath.”
Facts: United Network for Organ Sharing (UNOS) is a private non-profit organization focused on saving lives. Its mission is to help patients and their families who are in desperate need of organ donation. Some individuals continue to malign and defame UNOS, accusing our organization of unlawful behavior. These individuals are not able to produce evidence of retaliation, because it does not exist.
UNOS adheres to whistleblower protection laws and does not tolerate, or engage in, retaliation against whistleblowers.
To be clear: UNOS has never engaged in any unlawful behavior. Any statement to the contrary is outrageous and actionable in court.
10:56 a.m.
Statement (multiple witnesses): Donor organs are “harvested”
Facts: The term “harvest” is not used in OPTN policy or by UNOS because it is considered dehumanizing and inconsistent with the respect and ethical standards that are owed to donors and their families. UNOS promotes language that reflects dignity and compassion, such as “organ recovery” or “organ procurement.” While UNOS does not control all terminology used externally, we encourage respectful language throughout the donation and transplant process.
10:45 a.m.
UNOS is a private nonprofit organization. UNOS has served the nation’s organ donation and transplant system since 1986 through its OPTN contract with the federal government (HRSA). UNOS is not the OPTN. UNOS is one of several federal government contractors that support the work of the OPTN. UNOS acts as directed by and with oversight from HRSA to support the OPTN’s operations in accordance with NOTA, the Final Rule, OPTN policies, and OPTN bylaws.
Under UNOS’ OPTN contract with HRSA it is responsible for:
- Managing the national transplant waiting list and organ matching system 24/7/365
- Providing support to OPTN volunteers during the policy development and compliance oversight processes. The donation and transplant community and the general public have the opportunity to influence all policies developed by the OPTN.
- Monitoring compliance through data reporting systems and supporting the OPTN volunteers’ investigations of reported patient safety incidents
- Collecting and maintaining OPTN data on behalf of HRSA
Under UNOS’ OPTN contract with HRSA, UNOS is not responsible and cannot:
- Make any clinical decisions, including declaring death. The patient’s physician, the transplant team, and OPO professionals do this.
- Conduct oversight over hospitals. CMS, and HRSA in the case of a transplant hospital, does this.
- Direct OPTN investigations or deciding the outcome of OPTN investigations
- Unilaterally implement changes to the OPTN’s processes or systems without HRSA’s review and approval
10:27 a.m.
Statement from Knuckles’ testimony: “On one hand UNOS considers the donor eligible, yet five days later Barnes pathology reveals high grade metastatic cancer.”
Facts: UNOS, as the OPTN contractor, does not determine donor eligibility or make clinical decisions. OPTN policies set the medical and operational requirements for donor evaluation, infectious disease screening, and eligibility criteria. These responsibilities rest with Organ Procurement Organizations (OPOs) and transplant programs, which perform testing and assess donor suitability according to OPTN policy.
10:08 a.m.
Statement: In her prewritten testimony, Heather Knuckles, family member of a transplant recipient who died after she was transplanted with a cancerous organ, writes, “On November 3rd, five days post-transplant, surgeons informed us that the donor liver contained high-grade, metastatic, undifferentiated adenocarcinoma not reported on the donor records from UNOS but was discovered via pathology conducted at Barnes Hospital.”
Facts: UNOS maintains the OPTN Computer System, which OPOs use to enter, upload and share donor information with transplant teams receiving organ offers. All donor records in this system are provided by the OPOs. UNOS does not create or verify this information; its role, under contract with HRSA, is to provide and manage the information technology platform that supports these processes.
In addition, UNOS operates the OPTN Improving Patient Safety reporting portal, which OPOs and transplant centers use to report potential donor-derived disease transmission events (PDDTEs). UNOS does not diagnose or confirm disease; its role, under contract with HRSA, is to provide and manage the information technology platforms that support these processes, facilitate communication among stakeholders, and analyze aggregate data to inform policy and improve transplant safety.
Dec. 3, 2025: corrected witness Heather Knuckles’ descriptive text.