“It Was About Reclaiming My Life”: Why Transplant Transparency Matters

NKF is committed to system changes that advance our goal of getting a kidney transplant for every individual who needs one. That’s why we support the Centers for Medicare & Medicaid Services (CMS) in testing the Increasing Organ Transplant Access (IOTA) Model. The IOTA Model is working to improve shared decision-making and transparency in transplant, to make sure more kidneys are used for transplant and more patients can get off the waitlist more quickly. 

NKF recently submitted a comment to CMS in support of the model that focused on proposed policies that would improve patient-centricity in the transplant process. 

Read NKF's comment letter to CMS.

We know that not every patient needs the perfect kidney, and that an individual patient’s risk tolerance can change as he or she spends more time on the transplant waitlist. 

Our policy agenda in transplantation stems from a simple statistic: around 14 people die each day on the kidney transplant waitlist, while nearly 30 percent of kidneys procured for transplantation are never transplanted. Research shows that patients who die on the list receive a median of 25 offers before death. 

At NKF, we wonder: would the patients who died waiting for a transplant agree that each one of those kidneys was bad? We believe a shared decision-making model that allows patients to continually assess their risk tolerance relative to their health and quality of life on dialysis will help make sure more kidneys are used for transplant, so more patients can benefit. 

Learn about high KDPI and IRD kidneys for transplant.

In NKF’s comments, Precious McCowan, co-chair of the Public Policy Committee, shared her story with policymakers: 

"As someone who waited eight years on the kidney transplant waitlist, I experienced firsthand how exhausting and dangerous dialysis can be. 

Each treatment increases my risk of complications and mortality, with studies showing that long-term dialysis is associated with higher cardiovascular events, infections, and hospitalizations. Every session reminded me that my life was on hold, and the longer I waited, the more fragile my health became. 

When a kidney finally became available, it was not about it being “perfect”. It was about reclaiming my life, reducing the constant risks of dialysis, being able to contribute to the workforce again, care for my loved ones, and participate fully in my community. Patients like me want to be included in these decisions because our voices, values, and tolerance for risk directly affect the outcomes that matter most to us. 

Every transplant offer is more than an organ; it is a chance to restore hope, dignity, and a life worth living."

Public policies aren’t just words on the page–Medicare programs like the IOTA Model can give patients like Precious a chance to more fully participate in the decisions that impact them. 

Read Precious' full kidney story.

Our comments focus on bringing transparency to the transplant process. Too often, the patient journey doesn’t belong to the patient. We aim to change that. 

NKF supports policies that would: 

• Give patients visibility into organ offers that are declined on their behalf, if the patient wants that information. 
• Allow patients and their care teams to find a transplant center’s patient selection criteria in a centralized location to help patients overcome barriers to transplant, for example, by losing weight or stopping smoking. 
• Let potential living donors see a transplant center’s criteria for selecting donors.
• Require transplant centers to review organ offer acceptance criteria with waitlisted patients more frequently. 
• Notify patients on the waitlist when their status changes from active to inactive. 

In our comments, NKF committed to working directly with patients to shape transplant transparency policies. We state that the goal isn’t to overwhelm patients with information they don’t want, but to activate patients so they feel empowered to lead their care team to the outcomes, preferences, and values that matter the most. 

Want to help NKF fight for better kidney care policies?