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!
