Amping Up the Advocacy in Music City

Capitol Hill kidney summits–like the most recent one I described in my last post–typically draw more than 100 advocates from all over the country. The events are exciting and always include a day of informative talks, valuable training, and practice. It’s a tight program focused on the day of imminent meetings ahead, and there’s inevitably some anxiety about schedules and security lines if not the meetings themselves. So it was a real treat to be able to discuss advocacy at a more leisurely pace this week in Nashville with a smaller group of advocates from the region: American Kidney Fund Ambassadors.

The AKF advocacy team prepared an interesting day-long agenda, which left me motivated to (1) do the online training to become a kidney health coach and (2) think about someday pulling together a local advocacy event. And, as always, I left with admiration and fondness for my fellow advocates.

There I met up with living donor Stormi Murtie (center of pic), whom I’ve written about here (stepson Brecon is unfortunately back on dialysis and working full time while waiting for another transplant). I spent the most time with Stormi and Crystal King, a transplant recipient I’d met at a previous AKF event. I knew that Crystal’s quest for a transplant was several difficult years in the making. What I didn’t know is that she was one of the many casualties of the old race-based calculation used to designate kidney function (eGFR).

Under the old system used until 2022, lab results for creatinine (the level of waste products in the blood) showed different estimated kidney function for African Americans and non-African Americans. In other words, the same creatinine reading that might indicate kidney failure in a white woman, for example, was considered higher functioning in a black woman, based on assumptions about differences in muscle mass.

In practice, that misclassification meant that Crystal’s eligibility for a transplant was delayed by about three years. Her transplant was further delayed by the start of the covid pandemic when centers temporarily halted transplants. Fortunately, Crystal ultimately received a kidney from a living donor.

Today she’s a healthy, active, and effective kidney advocate. She’s the founder/director of the Kidney Champion Foundation, a nonprofit dedicated to helping historically marginalized and underserved communities of people living with kidney disease.

I am always honored and inspired to spend time with such remarkable, dedicated, and warm individuals in the kidney advocacy community.

For related posts and information on my book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website and my articles at Medium.com/@caroloffen.