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Authorizes the Department of Health and Human Services to collect a registration fee from each Organ Procurement and Transplantation Network (OPTN) member for every transplant candidate they list, while updating OPTN duties to encourage electronic health record (EHR) interoperability and require a public dashboard. The fee authority is temporary (sunsets after 3 years), must follow transparency and posting requirements with quarterly updates, and is subject to a Government Accountability Office review and report within 2 years. Fees are treated as discretionary offsetting collections and can only be distributed as provided in advance by appropriations acts. EHR work must comply with applicable HIPAA privacy rules.
The bill improves transplant coordination and transparency through EHR data sharing and increased oversight, but does so by authorizing new fees and temporary funding mechanisms that could raise costs for providers and patients, create funding uncertainty, and introduce privacy risks.
Patients awaiting transplant and transplant centers can share electronic health record data via standardized APIs, enabling faster donor referrals and better coordination of transplants.
OPTN transparency and oversight will increase through a public dashboard with more frequent transplant statistics, required posting and quarterly updates of fees, and a GAO review — giving patients, hospitals, and OPTN members clearer accountability for OPTN activities and fee use.
Hospitals and transplant centers will face new per-candidate registration fees that raise operating costs, and those costs could be passed on to patients or insurers, increasing transplant-related expenses (including for Medicaid beneficiaries).
Expanding EHR access and data sharing—even with HIPAA compliance requirements—creates privacy and security risks for donors' and patients' health information.
Making collected fees discretionary offsetting collections and allowing the fee authority to sunset after 3 years creates short-term funding uncertainty for OPTN operations if appropriations are limited or the authority is not renewed.
Introduced February 12, 2025 by Charles Ernest Grassley · Last progress February 12, 2025