Kidney Patient Summit on Capitol Hill

Yes, I finally made it! I made it all the way to the Capitol earlier this month for in-person meetings.

Taken during a brief break between legislative meetings. That’s me in the front row (in the beige raincoat)!

With teammates Necole and Dre Roundtree, left, and Alan Levy.

With Matthew Fitting, NKF’s Grassroots Advocacy Director.

During a hectic but fun afternoon of training and getting to know my delightful team members (pictured at right), we got tips not only on the legislative “asks,” but also on the fine points of meeting with congressional staffers. In fact, we even heard from two congressional staffers who knew the topics firsthand: one of them had been a National Kidney Foundation advocate himself, another was a recent living donor!

So what were our asks this time? Alas, if they look familiar that’s simply because we’ve been there before with the same critical requests:

1-Co-sponsor the Living Donor Protection Act (you’ve read a lot about this one both here and elsewhere through the years): To end discrimination by insurance companies against living donors just because of having donated a kidney.

2-Co-sponsor the Improving Access to Home Dialysis Act: A much newer piece of legislation, this would make it easier for those who want to do dialysis in their own home (right now only about 15% of people have dialysis at home because it’s not a simple matter–it requires training and support). The act would provide lots of in-home support for the first 90 days, among other benefits. This legislation would obviously be a boon for people in rural areas who may live well over an hour’s drive from the nearest dialysis center.

3-Support increases in funding for kidney research, innovation, and early detection. We asked for a substantial increase in funding for the CDC’s Chronic Kidney Disease Initiative plus increases on a par with other important diseases in the National Institutes of Diabetes, Digestive and Kidney Disease (NIDDK). While other major diseases have seen dramatic improvements in recent years, kidney disease outcomes, on the contrary, have gotten worse.