Statement from Kevin Longino, CEO of the National Kidney Foundation (NKF) and a kidney transplant recipient on proposed changes to the Increasing Organ Transplant Access (IOTA) Model
Washington, DC – (December 9, 2025) – “On behalf of the 90,000 people enduring the wait for a kidney transplant and patients navigating the journey to the waitlist, we applaud the proposed changes to the IOTA Model.
Far too often, the 3 to 5 year or longer wait for a kidney becomes a black box. Patients don’t know where they stand on the waitlist, lack visibility into the decisions being made on their behalf to reject organ offers, and are, therefore, denied opportunities for shared decision-making. Patients attempting to be waitlisted face information barriers that limit their ability to choose a center that is most likely to list them and that aligns with their values and preferences. We are pleased to see forward momentum on making the transplant system more responsive to the patient’s needs and agency.
The proposals announced today would, if finalized, require transplant centers assigned to the IOTA Model to periodically notify patients who have been listed for three years of organ offers declined for them, notify patients of waitlist status changes, and post the criteria used to determine whether someone can be a living donor. Along with the transparency policies already finalized, these new changes will address longstanding challenges faced by patients, care partners, and families working to receive a transplant.
NKF is a longstanding advocate for improved transparency in the transplant process. As part of that work, we have engaged patients and care partners to better understand what types of information are most meaningful to them—and when. The policies announced today acknowledge that nuance by, for example, allowing patients to opt out if they prefer not to receive additional information.
We are gratified that CMS is continuing to act on this priority and urge the Center for Medicare and Medicaid Innovation (CMMI) to finalize the transparency policies announced today that are consistent with the Center’s strategic direction to empower people to achieve their health goals. We look forward to partnering with CMS to ensure these policies are implemented in a manner that centers the patient as we work together to make sure more people can access the gift of a kidney transplant.”
About Kidney Disease
In the United States, CKD remains an under-recognized public health burden that impacts 1 in 7 adults, and 90 percent of those affected are unaware of their condition. Approximately 1 in 3 U.S. adults are at risk for CKD, but less than 20% are assessed with guideline-recommended testing, eGFR and uACR. Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity, and family history. People of Black or African American, Hispanic or Latino, American Indian or Alaska Native, Asian American, or Native Hawaiian or Other Pacific Islander descent are at increased risk for developing the disease. Black or African American people are about four times as likely as White people to develop kidney failure. Hispanic and Native American people experience kidney failure at approximately double the rate of White people.
About the National Kidney Foundation
The National Kidney Foundation is revolutionizing the fight to save lives by eliminating preventable kidney disease, accelerating innovation for the dignity of the patient experience, and dismantling structural inequities in kidney care, dialysis, and transplantation. For more information about NKF, visit www.kidney.org.
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Media Contact:
Paul McGee 716-523-6874
paul.mcgee@kidney.org