Earlier this week I was on Capitol Hill for the 2018 Kidney Patient Summit, a two-day event sponsored by the National Kidney Foundation. Yes, as in the United States Capitol in Washington, D.C., where I, along with about 100 other patients/advocates met with lawmakers to urge their support for kidney disease legislation.
As a dialysis patient three years ago, I would never ever have imagined that I would one day be in our nation’s capital lobbying my Senators and Representatives. I am not a lawyer or doctor or health policy expert. But I am a constituent, and I am a patient with a story. And when 100+ kidney stories are shared here throughout the Senate and House office buildings, we will impact change in kidney care!
Here’s a look at my first day at the Summit.
Kidney Summit Day 1: Advocacy Training
After we check into the Summit, we find our spot in the conference room. We’re seated with the other advocates from our state since we’ll be moving as a team, meeting with the same Congress members. We spend several hours preparing for the next day of meetings on the Hill.
We review the kidney legislation, hear what to expect in our meetings, learn how to effectively make our voices heard (definitely tweet!), and other agenda items. (You can read my tweets here.)
This is like Schoolhouse Rock part two. H.R. 3867 and H.R. 1270 are bills we’re pushing; H.R. refers to “House of Representatives” to indicate where the bill is. I also learn the difference between a caucus and a committee, and what it means for a Congress member to co-sponsor a bill.
Here is my team of fellow constituents from California. We’re all kidney patients at various stages of our disease. See the young man in the back? He’s 15 years old, and I can’t wait to tell you his story.
During the break we meet to strategize for the next day. We decide who will take the lead when discussing each bill and appropriation request.
I look over the schedule for us California constituents. Someone from NKF sets up our meetings a week or two prior. I’m eager to see if I will meet Congresswoman Barbara Lee from my district of Oakland, CA, (and other East Bay cities); unfortunately I won’t. More likely we’ll meet with a staffer at each lawmaker’s office but two of our six meetings will have the Congress member present.
At dinner we hear from the other kidney organizations who are joining us in the advocacy efforts.
All our meals and snacks are of course kidney-friendly. Some of us are still pre-dialysis or pre-transplant so diet is still restrictive.
After dinner we head back to our rooms upstairs. We’ll need a good night’s rest for a long day ahead.
Marty has joined me on this trip which is a nice reversal of roles. I’ve accompanied him on business to Chicago, and now he’s supporting me on my trip. While I quickly review my responsibilities for tomorrow, he’s on his way out for the 9:50pm showing of Black Panther at the National Air and Space Museum two blocks away.
I love the energy here in D.C.
For all you Gen X-er’s itching for a throwback to the 70’s Schoolhouse Rock! about the bill, here it is… Enjoy!
Hello Kidney! 
Way to go!!!! Love it!
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This is just great, Doris. “You go, Girl !!”
Sent from my iPhone
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