Morgan Reid, MSJ’s Post

After more than a year of persistent advocacy, I am thrilled to share that the Organ Procurement and Transplantation Network (OPTN) has removed the African American donor ethnicity characteristic from the Kidney Donor Risk Index (KDRI) algorithm! KDRI is a clinical equation that assesses the risk of graft failure after kidney transplant. If a deceased organ donor was African American, KDRI would essentially score that kidney as being more likely to fail compared to an organ donor who was non-African American. The National Kidney Foundation sent countless correspondence pushing to refit KDRI without ethnicity to the OPTN, had meetings with the OPTN Minority Affairs Committee, and escalated our advocacy to the Heath Resources and Services Administration (HRSA). This move is a significant action to advance equity in kidney donation and transplantation. A special THANK YOU to Dr. Tanjala Purnell for representing for NKF on the OPTN KDRI Workgroup, and to the American Society of Nephrology for partnering with NKF to push for this much needed change. Onward!

Tomorrow and Tuesday, I will be back on the Hill speaking with Congressional Black Caucus members about the ways kidney disease ravages Black communities and what they can do to help improve the quality of life for their Black constituents at-risk for and living with kidney disease. Did you know: 💡 Black people are 4x more likely than white individuals to experience kidney failure and often “crash” onto dialysis by initiating this life-saving therapy emergently? Kidney disease is asymptomatic until its advanced stages. 💡 Black individuals have lower rates of doing dialysis at home? If you ride through under-resourced neighborhoods in the U.S., you’ll surely see dialysis centers on every other corner. 💡 Despite experiencing higher rates of kidney failure, Black kidney patients are less likely to be referred for transplant by their nephrologist? Kidney transplantation is the most optimal treatment for kidney failure. 💡 The Medicare End-stage Renal Disease benefit is basically universal healthcare for people with a kidney failure diagnosis but it eventually costs the government less to pay for kidney transplantation versus long-term dialysis care? This is personal to me. I, a Black woman, walked into an emergency room in 2005 to learn I was in kidney failure and needed dialysis. Fortunately, my nephrologist put me on peritoneal dialysis, a home dialysis modality, and I received a living donor kidney transplant from a courageous college friend in 2007. So, my purpose in life is to pay it forward by helping all kidney patients, but especially those who are most vulnerable, live their best lives by having access to high-quality, discriminatory-free healthcare. No theatrics, no performative narratives, just pure passion and tenacity advocating for people to live the width of their lives and not just the length of it. I hope the Hill is ready for me 🧡✊🏾 *The shared statistic is from the UK but the sentiment rings true here in the U.S. as well.

My time at the American Transplant Congress has come to an end. Here are my highlights: ✨ I moderated a session on public policy and allocation — it’s inspiring to see science in action. ✨I spent time with the CMMI leads of the IOTA alternative payment model, a much needed patient-centered initiative to increase organ utilization and transplant access. ✨ Community! I got to see my peeps. Always lots of excitement when we can come off the zooms and see each other in living color! ✨ Listen, here’s a moment of honesty: there’s a lot of power struggle in the transplant arena and it can be discouraging and disheartening to fight the good fight. BUT!! Thank goodness for GOOD people who reminded me of my purpose in the space 💪🏾 Nothing is perfect, including our organ donation and transplant system, but there are many people taking action to make it better. So, I leave you with this quote by the late great Toni Morrison: “I know the world is bruised and bleeding, and though it is important not to ignore its pain, it is also critical to refuse to succumb to its malevolence. Like failure, chaos contains information that can lead to knowledge – even wisdom.” Let’s find the knowledge and wisdom. We are always stronger together 🧡

I’ve said this before and I will unapologetically say it again, I do this job because: 🌈 I am a kidney patient. 🌈 I know what’s it’s like to receive a chronic kidney disease diagnosis. 🌈 I have lived through kidney failure and dialysis. 🌈 I am the recipient of a precious life-saving kidney transplant. Sometimes the politics and the noise in healthcare/health policy is overwhelming. I always feel so good when I get to be around my people—people who are also fighting the good fight to get everyone the care they rightfully deserve with their whole hearts. Here are a few snaps with some changemakers at the American Transplant Congress who just want to make transplantation accessible, affordable, and anti-discriminatory. Also, HAPPY PRIDE!! I am an ally and proudly support the LGBTQIA+ community in their fight to receive equitable healthcare!

I’m in Philly! It’s that time of year where the most brilliant and passionate people in transplant convene at the American Transplant Congress to advance science, innovation, and equity in the field. There are many sessions that pique my interest, such as reducing disparities in transplantation by addressing structural racism and providing culturally concordant care and whether or not we should pay living donors for making the courageous and selfless decision to save another life. I have thoughts on this— I’ll share my perspective in the comments after I hear the pro/con debate! Also, if you’re attending, stop by the NKF booth (#621)! Have a wonderful day!

I am taking a moment to give 💐💐💐to my mentor/friend Dr. Tanjala Purnell, who recently met with Dr. Jill Biden, and has dedicated much of her research to studying and solving some of the most pressing health disparities. Mentorship, in my opinion, is a fundamental component to professional success. I have been fortunate enough to know and work with Dr. Purnell, and she has been an unwavering source of wisdom and inspiration for me, and in strive to reciprocate what she gives me. I hope everyone has a mentor/mentee where the pouring into each other is mutual 🧡 Thank you for all you do, Tanjala 💐💐💐

Hi Friends, I hope you have all had a weekend that allowed you to fill your cup! The past couple of weeks have been a whirlwind and will continue until next week, but in the absolute best way! In the last two weeks, I have been to: 💃🏾 Long Beach for NKF’s annual Spring Clinical Meeting, which brings together movers and shakers in kidney healthcare to address how to improve patient outcomes/experiences. 💃🏾 Washington DC to meet with Congressional Black Caucus member offices to discuss pressing kidney health matters affecting Black communities and potential solutions. Hill Staff are the BEST! I also attended the Congressional Black Caucus Foundation’s Policy For The People Health Equity Summit, convening changemakers and problem solvers dedicated to closing health disparities. Here’s what’s happening this week: 💃🏾 I am still reading through the nearly 400-page alternative payment model proposed rule from CMMI, Increasing Organ Transplant Access (IOTA model), and will begin the process of drafting NKF’s public comment. Very excited about this! 💃🏾 CMS is hosting a two-day Health Equity Summit that I will attend May 29 and 30. I am always eager to hear how the U.S. government is making healthcare fair and accessible. 💃🏾 Saturday, June 1, I will board a flight from Atlanta to Philly to attend the American Transplant Congress where I will moderate a session on Transplant Policy and Organ Allocation. This should be a hot topic! It’s a busy time but good things are happening in transplantation! Have a wonderful week!! (On Saturday I made a post that has since been deleted, but many of you supported and offered congratulatory comments. I saw them all and am always deeply grateful to be seen and celebrated, thank you 🙏🏾)

You know what, we all need each other. We can’t do policy work alone, there is power in partnership. The Congressional Black Caucus Foundation is doing it right with its Policy For The People summits—which I attended today. Health policy and equity was the topic du jour, and it’s no secret that we need to close disparity chasms across the board in every chronic disease plaguing Black communities. We need each other to achieve this. My favorite statement by CBCF CEO and President Nicole Austin-Hillery was “we are not cowards”. I am not and I will commit myself to doing what it takes to dismantle oppressive systems to create better health outcomes for people in the global Black community. Onward!