MY RECENT TRIP TO WDC WITH THE DPC

MY RECENT TRIP TO WASHINGTON, DC WITH THE DPC

 

          I just got back from a trip to WDC with the Dialysis Patient Citizens.  According to the DPC, there were over 70 patients and family members and over 60 dialysis facility staff from 49 states (including AK and HI) were on Capitol Hill yesterday. We met with Members of Congress to express opposition to the proposed 9.4% cut to the Medicare dialysis program. We were able to talk to 212 offices! The guy in the tan jacket on the left side of the banner, that’s me!

I flew into WDC on Sunday, September 8 at Ronald Regan Airport, and then taxied to the Marriot Hotel on 22d Street NW.  A dinner was held that night for us, and I started meeting new people right away.  There were so many advocates there, just like me that I felt at home right away.  One of the persons I met was my new friend Clayton and his wife.  They are from Hawaii.

 

Clayton is famous for growing his own food and teaching others to do that. Here is a link to an article about him, http://www.islandscene.com/Article.aspx?id=4275. He is a great guy and very knowledgeable about kidney issues.  I also got to meet several of my Kidney Heroes including Meshia, from Meshia’s Hope (http://meshiashope.org/) and master Blogger Devon who writes Devon, Texas. (http://devontexas.com/).

These are 2 of my favorite kidney advocates and to have all 3 of us in the same place at the same time was very cool!  Meshia and I are working on a project together to raise awareness for the CMS cuts to Medicare Dialysis Patients.  It should be amazing!  Devon has already blogged about us (naturally) (http://devontexas.com/2013/09/15/dialysis-and-dpc/).  I also had time to talk to my good friend Loretta Shanahan, a staunch kidney advocate!

The next day, Monday, September 9, 2013, I had my first adventure.  I have never taken dialysis out of town before, but because I was gone so long, this time I had no choice. My friend, Stephen Campbell, set up everything with Fresenius and a dialysis clinic just a couple of blocks from the hotel.  He even called that morning to make sure I was all right.  The building was on DuPont circle and at first blush looked like a bookstore.  The cabbie and I could not figure out where to go in.  We went around the corner and saw an entrance behind the bookstore.  It was about 7:00 am in the morning so at first it looked like everything was closed.  I was able to locate the place with Stephen’s help and by 7:30 am I was dialyzing.  It was just like home and the techs and nurses were very kind to me and helpful.  I was treated exactly as I am at my little clinic in Crown Point, Indiana.  There doctor even came by to see me.  She agreed to pass my card along to a patient who received a transplant from her mother years and years ago.  The patient is my age and her mother is 88 years old and both are alive and kicking.  You know I cannot resist a good kidney story!  I hope to hear from them soon, so I can share with you. Dialysis went off without a hitch and by 1:00 I was back at the hotel for training.

We had 3 of the biggest figures in the CMS fight speak to us. Hrant Jamgochian from the Dialysis Patient Citizens, Lori Hartwell from the Renal Support Network and LaVarne Burton from the American Kidney Fund.  The presentations were backed by a Power Point, they were very visible and well organized.  The presentations were very smooth.  I learned a lot.  They passed out packets to us to help us learn and packets to leave behind with our legislators. Here is a pix of myself and Lori.

 

          As part of the presentations, a group called Schmidt Public Affairs and their reps, Erin Schmidt and Kristen Burke, talked to us about using social media for advocacy.   I don’t know these people and I had never met them before.  They talked about using Facebook and Twitter to carry our message.  To my surprise they used both my buddy Devon and Myself (Kidney Stories) as examples.  The talk about us went on for several minutes and both of our sites were contained in the pass out material.  A free plug for Kidney Stories! https://www.facebook.com/KidneyStories?ref=hl. I felt very proud to have my efforts in online advocacy recognized in such a positive way! 

After training there was a break and then dinner.  They fed us like kings that whole trip.  I did not have to buy more than 1 meal that whole time and they even gave us petty cash to pay for cab rides and small eats while on Capitol Hill.  I talked later than I should have but it was so exciting to be with fellow advocates.  I also met my fellow Indiana advocates that were going with me the next day to advocate, Sherrie and Jackie.  Sherrie is a kidney patient like me, who runs her own Facebook page, Dialysis Warriors. (https://www.facebook.com/DialysisWarriors).  Jackie is a dialysis nurse that works for Fresenius.

 

We got up early the next morning and caught a bus to the Capitol.  Before we began our visits we all posed for a group pix in front of the Capitol Building. You can see Sherrie, Jackie and I (gold jacket) just to the left of the banner.

 

According to the DPC, this photo reflects history as this is the highest number of kidney advocates to ever visit Congress in a day!  Our first visit that day was to Senator Dan Coats’ office.  Usually on these visits it is very rare that you see the office holder. You usually meet with staffers or Legislative Aids.  Luck was with us on this day.  In the Senator’s office, Mr. Coats was kind enough to meet with us in the lobby of his office.  He was on his way to a meeting, but he took time to speak to each of us.  You know Jim; all business.  I reminded him that we were there on the CMS cuts to dialysis patients like me and that these cuts hurt dialysis patients like my clinic mates in Crown Point.  He assured us he was taking it very seriously and had assigned his best aid to the matter.  I was surprised but he did seem to recognize my name.  I have met with his aid in WDC before in March and his local aid, David Murtaugh.  I have written all my reps in Congress several times.  When we met with Samuel Blevins, there was no doubt that he recognized me as I did him.  It was great to see Sam again and we have a productive talk.  He is interested in the innovations where dialysis is potentially being replaced by scientific developments.  I promised to send along to him some of the projects that I am familiar with like the artificial kidney that is in the works at UCSF (http://www.ucsf.edu/news/2013/03/13699/artificial-kidney-holds-promise-vast-majority-dialysis);( http://www.ucsf.edu/news/2012/10/12810/artificial-kidney-project-ucsf-receives-3-million-new-funding); human kidneys being developed in animals, (http://www.theguardian.com/science/2013/apr/14/kidney-grown-lab-transplanted-animal) (http://www.telegraph.co.uk/science/science-news/10132347/Human-organs-could-be-grown-in-animals-within-a-year.html); kidneys developed in vitro (http://www.biotechnologyforums.com/thread-2135.html); stem cell research and kidney disease (http://health.usnews.com/health-news/managing-your-healthcare/womens-health/articles/2011/08/04/stem-cell-therapy-holds-promise-for-kidney-disease).  If you have seen things related to kidney research, send the links along to me and I’ll send them to Sam.

Next stop was Senator Joe Donnelly’s office. 

We met with Katie Campbell there.  She was very, very patient with us and listened to our pitch.  She took a lot of notes.  I reminded her that I had been invited to have coffee with Joe the next morning and she seemed to be pleased about that.  She likewise had recognized my name as someone who had been in their offices before and had contact with their local rep, Justin Mount.  I am a big Donnelly fan and he is one of my political heroes!

We had lunch and then we went to Congressman Todd Young’s office. We met with Emily Mueller, his Legislative Director.  I did not realize this before but Congressman Young was one of the 200 house members who signed the letter to CMS protesting the cuts to dialysis patients.  She seemed very concerned and attentive to our issues.  Then she surprised us.  She escorted us to the Capitol Building and in between votes; Congressman Young came out and spoke with us!

 

 

I thought he’d be more interested in my teammates because he represents them, but he treated me the same, telling me, “Well you’re from Indiana aren’t you?”  Very nice of him.  He seemed to heartily endorse our issues and we did invite him to visit any and all of our dialysis clinics. A dialysis patient supporter!

We were whisked by subway train over to our next meet with my Congressman, Pete Visclosky.  Pete and I had just met a couple of weeks ago in his Merrillville Office.  He helped me deliver my petition protesting the CMS cuts to the head of the CMS and he always has great suggestions.  This time was no exception.  He gave us some very helpful hints and he took the time to meet with us face to face with his Legislative Assistant, Emma Norvell.  He really surprised all of us.  After the meeting, we went over the Capitol Building steps and he took a photo with each of us.  Very cool guy.  My fellow advocates remarked that they felt he was the best meeting we had and he was very comfortable in his job. He’s all of that and more.  I did deliver to him 2 more copies of my petition.  Turns out he’s on the Kidney Caucus and he promised to pass those around to his fellow caucus members.  He is writing me with some other names to contact.

We closed out the day in the Senate listening to arguments on Syria thanks to Senate passes from Dan Coat’s Office!

I reported back on our day to Stephen, Lori, Hrant and Eric Edwards(DPC Board President).  I stayed an extra day so I could meet with Senator Donnelly.  I had dinner that night with Chuck Leggett(Board Treasurer) and his group.  We had Chinese.  It was outstanding and the conversation was lively.  Chuck is very well travelled and has taken dialysis all over the world including places where no one spoke English!  He gave me a lot of confidence about taking dialysis far from home.

 

The next morning I went back to Joe Donnelly’s office.  I was very surprised that there were only about 10 people there to meet with him and that he had this meeting in his private office!  I got to speak with Joe and his reps about the CMS cuts for quite some time.  Here is the pix he took with me:

 

It was a great trip and I learned a lot to help me as an advocate!

Here is a map of all the legislators we met with!