Kidney Patient Summit: Voices and Faces

As part of the annual National Kidney Foundation Kidney Patient Summit yesterday, I spent most of the day in virtual meetings with congressional staffers for my congressman, Rep. David Price; both senators, Thom Tillis and Richard Burr; and North Carolina representatives Deborah Ross and David Rouzer.

I was very fortunate to be joined by a wonderful group of warm, articulate fellow advocates who helped make the day a gratifying and enjoyable experience: Ashby Andrews, exec director of NC NKF, Marcelo Pena, and Jesse Harris.

Our three main asks were to support the Living Donor Protection Act, which bars insurance discrimination and protects a donor’s job; to facilitate home dialysis for those who want to do it but need professional and logistical support; and increased funding for research, kidney disease awareness, and early detection.

Marcelo and Jesse, who both have chronic kidney disease, shared their stories, particularly their perspective on what facilitating home dialysis can mean in the quality of life of a patient with kidney failure. I shared my story as an unlikely living kidney donor (a self-professed wimp) whose adult son/recipient, Paul, was diagnosed with kidney disease in college—as a result of a strep infection. We had no family history of kidney disease, and he had no risk factors. In other words, as I often point out, what happened to my son, and to our family, can happen to any family.

As always I was so struck by the value of sharing personal stories. When you hear that some 100,000 people have been waiting years for a kidney, it’s hard to digest. Lawmakers and their staff, who were all engaged and open minded in our meetings, are no different. When they hear someone describe what it’s like, both physically and psychologically, to be tethered to a machine for life-sustaining treatments a few hours a day, a few days a week, in a dialysis center–with bright lights and bells regularly going off on machines–the staffers will remember, not the numbers, not the dollars, but the pained look on the person’s face, the catch in his voice.

These are critically important, common-sense, noncontroversial legislative asks. For more information, please go to https://www.kidney.org/advocacy/legislative-priorities

For related posts, resources, and information on my new book, The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.