Sponsors (2)
The bill aims to speed organ matching and increase OPTN funding and transparency through EHR data sharing and registration fees, but does so while creating potential new costs for providers/patients, privacy risks, and funding/authorization uncertainties.
Patients awaiting transplants and transplant centers can share donor electronic health record (EHR) data electronically, enabling faster donor identification and referrals that can shorten wait times for transplant candidates.
Patients and providers get more timely, actionable information through a transplant dashboard updated more frequently than annually, improving visibility into transplant volumes and organ utilization for decision-making.
OPTN operations receive a dedicated revenue stream from registration fees and quarterly public reporting of fees and funded activities increases transparency and accountability without requiring immediate new general appropriations.
Hospitals and organ procurement organizations may face new per-candidate registration fees that raise administrative costs, which could be passed on to patients or insurers as higher charges or premiums.
Remote access to donor EHRs increases patient privacy and data security risks unless HIPAA and other safeguards are strictly implemented and monitored.
Crediting collected fees as discretionary offsetting collections and limiting distributions to amounts provided in appropriations could create budget uncertainty for OPTN awardees, complicating operations despite retained collections.
Based on analysis of 2 sections of legislative text.
Authorizes temporary per-candidate OPTN registration fees to fund OPTN operations, requires transparency and GAO review, and encourages EHR/API integration and a timelier transplant dashboard.
Introduced February 12, 2025 by Charles Ernest Grassley · Last progress February 12, 2025
Creates a temporary authority for the Department of Health and Human Services to collect registration fees from members of the Organ Procurement and Transplantation Network (OPTN) based on each transplant candidate placed on the waiting list. The fees would fund OPTN operations subject to appropriations, require public quarterly reporting of collections and uses, and must be reviewed by the Government Accountability Office within two years; the fee authority sunsets three years after enactment. The bill also pushes for better electronic integration among hospitals, organ procurement organizations, and transplant centers, including automated electronic referrals, remote donor EHR access consistent with HIPAA, and consideration of a more frequently updated transplant dashboard.