If you’ve been following this blog for awhile, you know that I’ve had many many meetings “on Capitol Hill” as a kidney advocate. Productive days filled with back-to-back meetings with legislative staffers, even some members of Congress–as part of the National Kidney Foundation’s Kidney Patient Summit and the American Society for Nephrology-led Community Advocacy Day. Every single one of them, alas, has been on zoom or the equivalent.
It all began for me when NKF accepted me as an advocate in fall 2019. I was thrilled to be invited to participate in the upcoming summit on Capitol Hill in March 2020. I had my plane tickets, my hotel reservation, and my fundraising page. As the date approached, I got more excited–and then…well, that’s of course when the world turned upside down. The Summit was cancelled just a few weeks before it was supposed to happen. I took part in the virtual summit held that fall, and they then scheduled an in-person one for March. That too was cancelled.
Fast forward to 2023. Once again I’ve been invited. I’m even going to be the group leader this time for our foursome from North Carolina. My bags are packed and I have my tickets plus a few new touches: a CLEAR app on my phone to show proof of vaccination and negative covid test. I’m chomping at the bit. (Of course, I’m nervous, too, worrying about going from office A to office B without getting delayed or lost.)
Interestingly, I’m not that uptight about the meetings themselves because I learned a long time ago that it’s the personal stories that matter most. As NKF’s Lauren Drew always points out, staffers and members of Congress sit in meeting after meeting with paid lobbyists and hear facts and statistics all day long. What will stay with them at the end of the day is not the numbers but the personal, emotional stories.
Staffers and lawmakers may not remember the fact that 37 million Americans have chronic kidney disease and the vast majority don’t know it yet. But when they meet a woman whose life was forever changed when her diabetes spiraled out of control and led to kidney failure–and hear her tearfully describe the long years of waiting for “the call” that a kidney is available–that they’ll remember.
Will they remember how many transplants were performed last year with living donors versus deceased donors? Probably not, but when they meet a healthy living donor who was repeatedly turned down or overcharged for life insurance just because of being a donor–that is, discriminated against for stepping up to save a life–suddenly supporting the Living Donor Protection Act–a noncontroversial, bipartisan effort–should become a no-brainer.
They may think that dialysis is a conveniently available option for everyone until they hear from someone who had to take two buses and spend 2 hours each way to get to the nearest center. Maybe that will help persuade them to support the Home Dialysis Act to expand access to and support for home dialysis for those patients–particularly in rural areas–who want it.
Will they remember how much federal funding goes toward kidney disease research? Perhaps not, but when they’re told unequivocally that investments in research and early detection will save Medicare millions of dollars down the road, they just might consider increasing appropriations.
For related posts, resources, and information on The Insider’s Guide to Living Kidney Donation, be sure to explore the rest of my website.