Tag: National Kidney Foundation Kidney Patient Summit

Mr. Smith–uh, Ms. Offen–Goes to Washington!

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.

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.