NKF Supports the Department of Health and Human Services’ New Kidney Transplant Transparency Policies

On December 9, the Department of Health and Human Services (HHS) announced updates to the Increasing Transplant Access (IOTA) Model. This model tests new ways to increase the number of kidney transplants in the United States. It also aims to make the transplant system easier for patients to understand at every step of their transplant journey.

The changes include:

Before Transplant

• Making each transplant center’s waitlist criteria available on a public website
• Requiring transplant centers to post the criteria they use to accept or decline a living donor

While on the Waitlist

• Making sure transplant centers tell you when your waitlist status changes and sharing that information with your care team
• Having transplant centers regularly review acceptance criteria with you
• Requiring centers to share information about organ offers declined on your behalf, if you want to know

Sign NKF’s organ offer transparency petition.

For many patients, the kidney transplant process can feel confusing and unclear. 

Pesh Patel, a kidney patient and member of NKF’s Kidney Advocacy Committee (KAC), describes living through the wait as “clinging to hope, haunted by uncertainty, and watching the clock through the days, weeks, months, and sometimes years toward the promise of life renewed.”

NKF believes that better transparency can help reduce this stress for patients, care partners, and families.

More information can support patients in many ways:

• Knowing waitlist and living donor criteria can help patients choose the center where they are most likely to be listed and understand if their donor might be accepted.
• Getting updates on waitlist status changes can help patients and care teams know what to do to return to active status.
• Learning about organ offers declined on a patient’s behalf can support shared decision-making and help patients feel more involved in their care.

Read NKF’s press statement on transplant transparency in the IOTA Model.

NKF has long advocated for giving patients clear and useful information about the kidney transplant system. Our Government Relations team works with Congress and the White House to support policies that improve transparency.

This year, NKF held several focus groups with patients and care partners to learn where more transparency is needed. Most participants supported getting more information, but also wanted the option to opt out. As Pesh’s story shows, patients' needs can change over time.

NKF’s goal is to help patients get information in the way that works best for them—and only when they want it. 

As Pesh asks, “Is it better not to know?”

Every patient is different, and transplant policies need to reflect that.

Make a difference in kidney care: Become a Voices for Kidney Health advocate. 

By Pesh Patel

Tik, Tik, Tik, Tik… Each day on dialysis felt suspended in time. The relentless question pulsed through my mind like a stubborn migraine: “Will it ever happen?” 

From May 2017 to August 7, 2018, I lived the longest 15 months of my life. And I am one of the lucky ones—my wait was “only” fifteen months, thanks to a living donor. 

But there was a catch: my donor wasn’t a match. Instead, I was placed into the world of paired donation, where hope is real, yet a step away.

My transplant coordinator and medical team were transparent with me every step of the way. Any time I had questions or wanted updates on my status, they were there with answers. 

They reassured me, “Your wait won’t be long! You’ll be transplanted soon.” 

However, as I learned, time is tricky in the transplant world; “not long” is painfully relative. 

Dialysis is not just a physical grind that includes fluid overloads and blood pressure swings; it also tears at your spirit. You manage to exist in a fog, floating between hope and numbness.

Twice, I was told a match was found. Twice, I prepared myself for surgery, only for the donor to change their mind. Each time, my world shrank back to the same chair, the same fluorescent lights, the same routine. 

Tik, Tik, Tik, Tik…That’s when depression crept in, and I reached my lowest point.

I started to believe this would be my life—ten, maybe fifteen years, just like others around me. Dialysis days blurred into a dialysis daze.

Now, I am back on the transplant list. I often wonder whether knowing every time a kidney was offered and declined would help—or make the wait even harder. Would I accept a higher-risk organ just to get off the list sooner? As someone with O+ blood, where the average wait is 7 to 10 years, these questions can be overwhelming.

How often should I check my status?

Is it better not to know?

For many of us, this is the reality—holding on to hope, living with uncertainty, and waiting for the chance at a new life.

Tik, Tik, Tik, Tik…

Get more information about kidney transplantation. 

NKF will submit comments on the proposed transparency policies for the IOTA Model. We plan to closely monitor how these different kinds of notifications take effect and amplify the patient voice to make sure more information in the transplant process reflects patient needs. 

Find more ways to take action with NKF.