#NephMadness 2023: A Journey of a Thousand Miles… Begins With the Right Support
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Tanjala Purnell @tpurnell1908
Tanjala Purnell is an Associate Professor of Epidemiology and Surgery at Johns Hopkins University, where she conducts research to advance equity in kidney health, transplantation, and organ donation. She is the 2023 recipient of the NKF Excellence in Transplantation Award.
Competitors for the Kidney Transplantation Region
Journey to the Wait List vs Organ Pool
As an advocate for kidney health equity, I am very excited to participate in #NephMadness 2023. Specifically, I am happy to lend my voice in support of the Access to Kidney Transplant region. But first, I have a confession to make. I am a huge fan of Dawn Staley, who is an Olympic gold medalist, American Basketball Hall of Famer, and award-winning head coach for the South Carolina Gamecocks Women’s Basketball team. Recently, a close friend and I traveled to Hartford, CT to cheer on South Carolina as they faced off against the UConn Huskies Women’s Basketball team. So far, so good, right? Well, I did not realize beforehand that our seats were in a section surrounded by UConn Huskies fans! Lol, thankfully it all worked out fine and we had a great time at the game, especially since the Gamecocks maintained their undefeated regular season record.
By now, you may be wondering what that story has to do with NephMadness and kidney transplants. There are at least three quick parallels that come to mind: 1) access to resources, 2) support to overcome barriers, and 3) a sense of belonging.
Access to Resources
Just as it takes a concerted effort and baseline level of resources to travel across states to attend a sold-out game in support of one of your favorite collegiate basketball teams, it takes an in-depth understanding of the complex journey to the waitlist (or living donation), as well as access to resources at several steps along the path to successful kidney transplantation. These steps include timely education and referral, completion of the evaluation process, and active waitlisting or receipt of a living donor kidney transplant. Tangible resources are needed to successfully make it through the journey, such as health insurance and financial expenses (e.g., medications, exams, travel expenses, and other opportunity costs, such as childcare and lost wages). Patients have also expressed concerns about future financial risks, insurance eligibility, and medical coverage for potential living donors.
Support to Overcome Barriers
When we arrived at the basketball game, the first barrier we encountered was uncertainty around where to park. Most of the parking lots and garages were already full. After riding around in circles for several minutes, we finally spotted a sign that indicated there was space available. Although we were relieved to finally find a spot, this unexpected barrier contributed to us missing the opening tip-off. In a similar manner, patients and potential donors may encounter barriers at several steps along the path to transplant, and these barriers operate at multiple levels related to potential recipients and donors, health care providers, health system structures, and communities. Comprehensive and tailored support to increase transplant access and overcome barriers to the process is needed. Excitedly, the transplant community has recently made some progress, such as the Organ Procurement and Transplantation Network (OPTN) policy changes using race-free eGFR equations to determine waitlist eligibility, the 2014 OPTN Kidney Allocation System changes to improve efficiency and equity in organ allocation, and legislation to protect living donors by prohibiting insurance companies from denying or limiting life, disability, and long-term care insurance. However, continued efforts are needed to overcome remaining barriers that perpetuate disparities in access to kidney transplantation.
A Sense of Belonging
When it finally made it to our seats, I was thrilled and looked forward to cheering on the Lady Gamecocks. Then, I realized we were surrounded by Huskies fans. Lol. My initial thoughts were, “Did we sit in the correct section, and do we belong here?” Similarly, while navigating the complex processes of transplantation and donation, many Black and Hispanic patients may find themselves wondering, “Do I belong here?” To increase transparency, remove barriers, and redress inequities, targeted interventions are needed that are designed to reduce transplant disparities through appropriate and respectful engagement of diverse communities and patients with lived experiences. It is important to incorporate patient and family engagement in the design and implementation of approaches to overcome barriers to transplant and donation. Provider and center practices that promote shared decision-making and that are respectful of cultural differences in family and social network dynamics are crucial. Meaningful partnerships between health systems and community resources to address barriers are also paramount.
In summary, I am very proud of recent efforts within the nephrology and transplant communities to increase access to kidney transplantation. Although continued efforts to remove remaining barriers and redress long-standing inequities are needed, this is an exciting time for the field. Therefore, I support the Access to Kidney Transplant Region as this year’s #NephMadness champion! P.S. Go Coach Dawn and the Lady Gamecocks!
– Guest Post written by Tanjala Purnell @tpurnell1908
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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