#NephMadness 2023: Keeping Patients off the Bench and In the Game for a Winning Shot!

Posted on March 14, 2023 by AJKDblog in NephMadness // 0 Comments

Submit your picks! | NephMadness 2023 | #NephMadness | #KidneyTransplant

Morgan Reid @_morganreid

Morgan Reid is the Director of Transplant Policy and Strategy with the National Kidney Foundation. She is a kidney transplant recipient who is passionate about creating policies that ensure everyone has equitable access to kidney transplantation.

***Competitors for the* *Kidney Transplantation Region***

Journey to the Wait List vs Organ Pool

The National Kidney Foundation (NKF) is ecstatic to see that kidney transplantation has made its way back into the NephMadness tournament in 2023! Not only is kidney transplantation a hot topic for NephMadness, but it’s also a hot topic for us at NKF. We firmly believe in transplants for all; everyone should have equitable access to kidney transplantation. We are cheering for both teams in the Access to Kidney Transplant region. We applaud Journey to the Waitlist and Organ Pool for presenting timely and compelling perspectives on kidney transplantation. We would definitely say they both brought their A-game and slam-dunked it!

Patients are truly the heart of all we do at NKF. As a patient advocacy organization, we are committed to playing our position and applying full-court press to ensure patient-centricity becomes a priority in our transplant ecosystem. The journey to the waitlist is not a layup for many people, especially for historically marginalized communities. One victory we believe is a giant leap forward in health equity is removing race from the eGFR equation, an initiative NKF championed in partnership with the American Society of Nephrology (ASN) through a joint task force to make referrals to transplantation fair and ethical for Black patients.^[1] We took a shot, and we’d say that the Organ Procurement and Transplantation Network (OPTN) ally-ooped it when they unanimously decided to mandate that all transplant centers adopt race-free equations to assess kidney function. Using race in clinical algorithms? Ref, call a technical foul! Flagrant Foul! Flag on the play—wait, that’s football, but you get where we are going.

We know all too well the non-medical obstacles people experience at the patient, provider, and system levels, such as medical mistrust, patient education and knowledge, provider communication, and bias in receiving a referral to a transplant program and during the evaluation phase once that referral happens.^[2] People with kidney failure want to feel better. They want to be back in the game; no one wants limited (living) time, and no one wants to be benched. Patients want what we are all looking for: to be seen, heard, and to have an advocate to ensure they complete their transplant journey successfully.

Healthcare providers and professionals are uniquely positioned to provide patient advocacy on several levels–individual, adjacent, and structural– to influence practice, community, and government.^[3] If we, as a community, are genuinely invested in improving the patient experience in kidney transplantation, patients need your advocacy for a transparent, equitably accessible, patient-centric transplant system that prioritizes inclusion, cultural sensitivity, awareness, seamless care coordination, and shared decision-making. Kobe Bryant said, “We can’t always be average and just do what’s normal. I’m not it this to do what’s normal”. Lives are at stake. Patients do not have the luxury of time for us to do what is normal anymore; it’s time for new plays to challenge the status quo and push boundaries to ensure the transplant journey has few turnovers to get to the winning shot.

It is safe to say that the Journey to Transplant has won this round (insert airhorn)! Improving access to transplantation is vital for the health and well-being of kidney failure patients. Patients deserve to have anyone working in and devoted to kidney transplant advocating on their behalf to make the transplant process easier. We cannot just talk the talk, but it is critical that we also walk the walk.

NKF would love to give a shout-out to the Organ Pool team, who shared incredibly sobering information on organ non-use. Thank you for highlighting this issue; it is also one of immense importance to our organization. We know that people die each day awaiting a life-saving kidney transplant, yet so many recovered kidneys go to waste. We are eager to solve this problem and support initiatives to increase transplantation and reduce the non-utilization of recovered kidneys.

A special thank you to Dr. Samira Farouk and the American Journal of Kidney Diseases for the wonderful opportunity to participate in NephMadness.

^[1] Delgado, Cynthia, et al. “A Unifying Approach for GFR Estimation: Recommendations of the NKF-ASN Task Force on

Reassessing the Inclusion of Race in Diagnosing Kidney Disease.” American Journal of Kidney Diseases, vol. 79, no. 2, 2022,

https://doi.org/10.1053/j.ajkd.2021.08.003.

^[2] Harding JL, Perez A, Snow K, et al. Non-medical barriers in access to early steps of kidney

transplantation in the United States – A scoping review. Transplant Rev (Orlando). 2021;35(4):100654.

^[3] Earnest, M., Wong, S.L., Federico, S. et al. A Model of Advocacy to Inform Action. J GEN INTERN MED 38, 208–212 (2023). https://doi.org/10.1007/s11606-022-07866-

– Guest Post written by Morgan Reid @_morganreid

As with all content on the AJKD Blog, the opinions expressed are those of the author of each post, and are not necessarily shared or endorsed by the AJKD Blog, AJKD, the National Kidney Foundation, Elsevier, or any other entity unless explicitly stated.

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