166) Advocating for KCQEA

September 19, 2007

Madison Hotel, DC:
So I was smart to get up really early this morning to shower and make it down to breakfast at 7… well, actually 7:15… and I didn’t wear my sport coat cause I had to have the tie and I thought a little bit at a time… I’d come back up to my room, etc. So, I get in line for breakfast: scrambled eggs (no picante sauce at this DC hotel), bacon, sausage, and an English muffin. Sit down at Elizabeth’s table and she announces “You’re with me today!” and I get coffee and begin eating… and before I know it it's time for advocacy training from a very
sharp person named Billy who trains us on the political landscape; brief review of the legislative process; review of the Kidney Care Quality Education Act of 2007 (KCQEA)*; winning strategies for having an impact on 'the hill'; tips for lobbying; and developing our "elevator" speech. Billy says an elevator speech is 'our personal story' distilled into less than 2 minutes, because when we meet with members or aides we can never be sure we'll have more than a few minutes to influence them. So, we want to thank them for seeing us, tell our story, share info about the KCQEA and make 'the ask' (ask them to either sign on as a sponsor, or if they already have, ask them to tell their friends to sign on). At the end of the didactic part, Billy has us practice in threes and then has a group come up and role play a meeting in front of the whole group.

After Billy, we hear Chad the ED of DPC (Davita Patient Citizens the 501 C 4) talk more in detail about the KCQEA legislation details and the CHAMP Medicare re-authorization bill that bundles payments for dialysis and cuts epogen use by 4% across the board and cuts 3.5 billion dollar from the portion reserved for dialysis patients. According to Chad, 300,000 people across the nation are on dialysis currently, and that is too big a group to suffer these cuts. Therefore we need education and prevention and payment reform <-- our message. Time for lunch! What a morning session!

I decide the pile on the salad and blue cheese dressing for lunch... well, and have a little roast beef with mustard/horsey sauce and mayo and onions and lettuce sandwich. Yum yum. Just like home. I'm chomping and Elizabeth comes up and warns, We have to catch a cab in 10 minutes”. Well, I eat even faster and she goes to her room to get a camera and says on her way out, “meet me in the lobby in five…” and I eat faster. I rush out as Erich from E. Lansing, Michigan says, “good luck on the hill!” and I mumble something in reply… rush up to my room to get my folder and then down to the lobby. Oh. I did take my binders, BTW.

On the Hill: We catch a cab and it is just me and Elizabeth. Our third member didn’t show up for the event so I all of a sudden realize that she is the guide and I am the guinea pig... I mean, the live patient on dialysis... the person from Texas here to “tell my story” to the seven Texas members we have on our list. ME! "Good time to figure out what my story is" I tell myself. This is rolling around in my head as we slide into the back seat of the cab and roar off into the streets of DC, on our way to Sam Rayburn’s Building. My story is one with the following points that I am supposed to be able to tell in a minute or so, and then execute “The Ask”. My story is of a
50 year old who finds out they have the dreaded end stage kidney disease and ends up on dialysis, which changes my whole life, but isn’t nearly as bad as others who have to rely on Medicare to keep themselves alive. ‘The Ask’, for me, “Will you sign on to co-sponsor (support) the KCQEA?” And, “What do you think of the CHAMP Legislation?... cause we don’t like parts of it…” Intermingled with my story we interject Elizabeth’s story of finding out she has a kidney condition that I never heard of and how she has kept herself off dialysis through conscientious diet and education about kidney care. If they have signed on to co-sponsor the KCQEA, we thank them and still ask their thoughts about the CHAMP bill and it’s latest version that cuts 3.5 billion from ESRD dialysis patients. Do they favor that?

There is a statue of ‘Mr. Sam’ in the oval corner of his building, standing there very white in the chalk-like material it it made from. I wonder if it is plaster or marble but we don’t pass close enough to it for me to touch. Sam Rayburn**, speaker of the House in the good old Democrat days ~ serving as Speaker of the House from 1940 to 1961.

In Sam’s building we visit with Representative Joe Barton’s young Legislative Correspondent, Michael Seeds. Michael is our first ‘customer’ and we do a fairly good job of sharing the stories and the information giving and the asking for support. We move on to meet with Kyle Oliver, the Legislative Director of House Rep Ralph Hall, from North Texas. Although Rep Hall is from Rockwall, Kyle is from Austin and we strike up a conversation about ACL Festival and I decide to make an impression (Our trainer Billy Kreisberg taught us that some part of our story will stick with the person… and my experience is that when folks feel my trill of the fistula… THAT sticks! So, I stick out my hand and ask Kyle to touch it. Like all touchers of fistulas, he jumps and exclaims, “Wow!” and then I get to explain it to him. Hopefully it is an an
chor of this meeting. Elizabeth and I more smoothly integrate our stories with our info sharing and we walk outa this Rep’s office high fiving. We got it down.

We catch a cab to another office building, meet with another rep and a senator and get sort of cool receptions and then are off to another building where we have almost an hour’s wait. Elizabeth write her notes on the meetings and I read the Washington Post and review my notes for the next meeting. I still want someone to fall down on the floor over our plight.

So, we go to Kevin Brady’s office and we think we’re gonna meet with the Representative himself… and, we’re not… cause he is off voting for something. So, we meet with Chris, the rep’s legislative assistant and we’re slow on the uptake but he seems real interested and the rep has already signed on to support the KCQEA so we thank him and begin some less than excited conversation. Well, then, all of a sudden the rep comes in, takes
off his jacket, apologizes for being late, and wants to actually talk to us! He knows the legislation, talks about his support, is willing to discuss his difficulties with CHAMP, and asks us what we think about the whole thing. He is personable and I think, “Of course this guy could get elected, he is very nice, friendly, genuine, and I would follow him…” Oh… and BTW: he happens to be the Republican House member from Conroe. I share doing work with MCYS over there and we both applaud their long history of good services to the area. He is easy to be informal with and we get our picture taken with him. He feels my fistula and I think it is a good visit.

We move on to two Democrats; Henry Gonzalez from SA and last, but not least, Lloyd Doggett’s office. At Gonzalez’ office we see the Representative walking between rooms and he is warm and welcoming and feel immediately at home in this basically all Hispanic office. We talk to Leo from Houston who loves Austin and is very interested in how the 3.5 billion got dropped from the CHAMP. He will look into that because he knows how dialysis treatments losing money hurts the Rep’s constituents. We feel good about this meeting and I was happy to see the Rep again. At Lloyd’s office the receptionist is from Austin and she and I talk… all I remember is her saying how difficult it is to find a place here in DC to sit by a creek of cold water in a bikini and read a book. She is bubbly and later I find out her name is Katie. We meet with Jackie, Doggett’s assistant, who knows exactly why he hasn’t signed on to support the bill and she mentions that they are concerned that they only sign on to legislation that they can unquestionably support, not just to be on the band wagon. I’m impressed with her honesty. She does ask a number of questions about my experience of dialysis after I make her touch my fistula. She was squeamish but she stepped out of her comfort zone with a little bit of coaxing… and she then opened up more and asked about the EPO issues that were on her mind. We did our best at sharing DaVita’s procedures for dispensing epogen (the acceptable rates at which it is given) and Jackie showed her knowledge of the issue with an accurate reply about the hemo numbers in healthy people. Elizabeth did a good job of discussing this issue, thankfully, cause all I really know is what I’ve read and my own observations of my situation. We ended up talking to Jackie for a good 40 minutes, so I am thinking she was interested in what we had to say, and in the fact that I write Lloyd all the time.

We walked outa there feeling spent but happy with our day’s work…. Caught a cab back to the hotel and I hit the snack room before coming upstairs to check email. All in all I felt very good about working with Elizabeth. From our between-meeting conversations I gleaned that she is an ethical social worker who has a Speedy Gonzalez voice and a passion for working with kidney patients. She has been involved with a number of DaVita projects that are client-centered and positive.

Later: At the dinner tonight the ED and founder of DaVita came with a message for us from the corporate sponsor of this whole thing… that he applauds us as the unsung heroes of dialysis (without his Muskateer outfit). He seems to be quite charismatic and his spiel reminded me of an Insight Transformational Seminar facilitator's. This is not a bad thing. It is simply a description of a person filled with an effervescence and passion that borders on manic. His message was about DaVita's developing the best dialysis program the world has ever seen. I wanted to ask about why he didn’t make DaVita a non-profit, since he stated that one of his dreams was to do work in the non-profit sector when he was drawn back to creating DaVita…. and, clearly I didn’t want to know enough to actually ask the question.

After dinner I talked to Jack from Iowa, who has been on dialysis for 32 years now… and that was inspiring. In fact, I got so immersed in talking to Jack that I was late meeting Robert (TNOYS’ Youth Staff Member) in the lobby. Luckily, Robert waited for me and we had a nice meeting in the bar sharing our day, our highlights of the last few weeks and our thoughts about DC. And of course, since DC is really (for me and Robert) a suburb of Austin, he is in class with Katie, the bubbly woman from Doggett’s office. I told Robert I thought she would remember me, since she waved at me when she walked out. I remember her…. she should remember me. Robert will find out!

So there it is.

So it goes. And... Onward thru the fog……… in DC.

* KCQEA (Description and background) retrieved online October 2007 from the Kidney Care Partners website, http://www.kidneycarepartners.org/kcp_act.html
**Sam Rayburn retrieved September 2007 from the Famous Texans website, online at

1 comment:

cheryl martin said...

You Go Jack......Get the word out!!! Sounds like, if nothing else, you have had an invigorating and educational couple of days....and advocating certainly "fits you to a T."(whatever exactly that means). Your previous blog about the smoking/nonsmoking room and the "what to wear" dilemma made me laugh! Hope you are back home all safe and sound. Your Cheryl