DC Diary: Bringing Kidney Disease to Capitol Hill

I have to admit, that it was out of curiosity, more than civic duty, when I decided to become a part of the PKD Foundation United on the Hill 2010 http://www.pkdcure.org/tabid/1497/Default.aspx. Sure, I have PKD (second generation - so I've seen it all my life), I'm an American, my vote counts. And on March 1st & 2nd, hopefully my voice will count as well. But I am a hesitant advocate. When I was younger, I spent a lot of time in Washington DC. I have a lot of memories there, and I never imagined that one day I would be going back to the Hill and trying to make change, but look at me now. I would never have been doing this were it not for IHD and all the people that it introduced me to.

Epoman started IHD as a place to share, and it is in that spirit, that I am going to post my journey to DC as an Advocate. My personal agenda is a bit different than the agenda of the PKD Foundation, but the two are complimentary.

Even though this "Diary" may be about Advocacy on the Hill, the truth is, an Advocate is anyone who can help - in any way possible. Almost every post I read here on IHD is advocacy, just showing that we are all in this together and as a group, we change each others lives on a daily basis.

That being said, now back to the event. Tonight was the first conference call, explaining what to expect, some logistics, and an overview of talking points to bring up with the Senators, Congresspeople and their staffs. Even though I live in NYC, I vote in Maine. I am a Mainer, I was born there and went to school there from grade school through High-school. So for me, my meetings will be in the offices of Senator Olympia Snowe (R), Senator Susan Collins (R) and Representative Michael Michaud (D). The PKD Foundation sets up the appointments. There is a day of training on Monday 3/1, and then appointments are on 3/2. There'll be around 100 people going as a part of the PKD Foundation.

For anyone who wants to get involved with any issue that they might have, if you don't want to join a group and go to the Hill, e-mail your congresspeople and let them know what you need. They were elected to be YOUR representatives in Washington, help them do their job. Here is a link http://www.votesmart.org/. By inputting your zip code, you can find out who represents you, you can click on their name check out their stats and under then use their contact information link in the right column, to e-mail them with your concerns.

As a nation right now, we are suffering from Healthcare Fatigue (elected officials especially). It has been a rough and bloody battle and we are still in early days of healthcare reform, but for those of us with Chronic Kidney Disease (and those who love someone with CKD), we are used to fatigue and bloody battles (it is just another day in the life of a CKD survivor).

I'll update this post during the days that I am in DC 2/28 - 3/2. (I may even take some pictures just for the fun of it - Should I try to kiss Justice Roberts? I could swing by the Supreme Court - Susie "Goofynina" would laugh!)

Wednesday, February 17th
Conference call with Kimberly Cantor, Government Coordinator PKD Foundation. Kimberly welcomed us, gave us a pep talk about sharing our story, some logistics about navigating the events of the two days, and general info about meeting with Senators, Congresspeople and their staff. Then she ran down the talking points for the PKD Foundation (I'll go into details of those w/ my commentary when I've gone over my Lobby Package). For now, I'll say that there are 3 big ones: Extending Immunosuppressive drug coverage; NIH PKD Research (including report language); Research under DARPA (the Department of Defense Research and Development (- I know, who knew that disease research was funded by the Department of Defense???))

There will be e-mails and agendas in the next few weeks, I'll get my final appointments, and well, then on Sunday 2/28, I'll be on BOLT bus for the 3.5 hour ride to DC.

Thursday, February 25, 2007
Well, I am in final prep stages for my trip. I foolishly agreed to meet with both Maine and New York. My first time Lobbying, and I take on two states... I guess I am an overachiever (or kinda delusional). The PKD Foundation have their own talking points that I will have to address, but I also have my own agenda. The initial meeting with the staffers and elected officials - is just that, and initial meeting, put a face on the people, make the issues personal. (it is more difficult to say no, when you have met the person asking). I've been working on my own personal position paper (as a voter); researching the members that I will be meeting with, how they have voted in the past, what is public in their biographies, some of the demographics for CKD in their constituencies (like how many dialysis units, and how many offer home hemo) - The PKD foundation has paid researchers to compile their data, and I will be furnished with a leave behind packet for the PKD agenda. I will be on my own with my personal CKD agenda. Well, I am back to doing my homework. There is a snowstorm today in NYC, perfect weather for staying inside and organizing my thoughts.

Monday, March 1, 2010
Well here I am, Sheraton K Street, Today was a day of prep for the 100 PKDer's for tomorrow's storming of the Hill (ok, not a storming, but a short bus ride...)

My overall observation is that the PKD foundation is well funded, well staffed and well organized. I don't like some of their "transplant is the only option" talking points, (I actually jumped out of my chair when I heard "People on dialysis can't work" over and over and over again...) I made a point of telling everyone I encountered that the current system is wrong, and there are better ways out there. After a few hours, I was able to not take everything so personally, and I sat back and viewed it all as a cultural observer.

The way I look at it, in the CKD world, Transplant is the prom queen, everybody wants to be around her or be in her court. Chronic dialysis is everyone else, the science geeks, the kids who can't dance, and the cool kids who just don't care about the prom. Sadly, there can be only one prom queen. I'm here for everyone else, the people in the majority.

The PKD Foundation is Lobbying for the immunosuppresive drug bill, DARPA money for research and program money for research, as well as NIH NIDDK Report Language. If that all sounds like Greek to you, well, it is. I'll write more tonight, I am making this a social trip as well as an Advocacy trip, so I am off to meet a friend before the next PKD event.

Thursday, March th
I still have a lot to write about this, but it has been a hectic week. For now, I'll just cross post what I wrote for Bill Peckham's Blog: Dialysis from the sharp end of the needle:

http://www.billpeckham.com/from_the_sharp_end_of_the/2010/03/taking-kidney-disease-to-the-hill-it-pays-to-be-organized.html

Taking Kidney Disease to the Hill: It Pays to be Organized
by Anna Bennett

I participated in the PKD Foundation's Annual United on the Hill Event on March 1st & 2nd. It was eyeopening to say the least, what a week to be in the Congressional buildings to discuss health care. Recently, the PKD foundation hired an amazing National Director for Government Relations, Kimberly Cantor. I was greeted on Monday with a slick, easy to read binder, a personalized appointment sheet (all meetings were set up by the PKD foundation in advance) and leave behind packets for the PKD Lobby, emphasizing the PKD issues (or in polispeak, the "asks"). The addition of Ms. Cantor brought the PKD Foundation to a new, professional level. 100 people from all over the United States, all affected by PKD rallied and took the call to the Hill, talking points in hand, having been prepped in the ballroom of the K Street Sheraton for a day on the issues, then on Hill day, given a kick-off breakfast before being bussed to the base of the Capital. Let the lobbying begin.

... government of the people, by the people, for the people, shall not perish from the earth.
The office buildings on Capitol Hill are buzzing with suited blackberry toting staffers, along with many lanyard wearing groups like the PKD Foundation, and others who are there to plead their cases to their elected officials and staffs (mostly their staff). News crews set up and break down on the steps of various buildings, waiting for a sound byte. The politicians and their staff can avoid being above ground totally by using a series of tunnels that join the buildings on the Hill. The tunnels and the cafeteria is where it is at. I met a friend for coffee before my first meeting on the House side of the Hill, and we listened as young staffers commiserated about being yelled at by constituents on the phone at one table, a defense contractor talking bids at another table, and the corn lobby preparing for a presentation. It was exciting and fascinating and I am no stranger to the Hill. At the forefront of my mind is that statistically all these people's lives will be touched in some way by CKD.

With Ms. Cantor at the helm, the Foundation can easily track their successes. One goal was to get more co-sponsors for the immunosuppressive drug bill (H.R. 1458/S. 565) it worked, just the day after, there was a congratulations call from the sponsor's chambers. By going in to their representatives and putting a face and a story on the impact of the issue, three Representatives have already signed on, bringing the total to 83 co-sponsors in the House.

What I learned by joining this group on the Hill? Organization, focus and passion can work. Personally, I don't agree with the niche marketing and "transplant or die" stance that I saw during prep. I eventually started having a physical reaction each time I heard a person with a microphone (either from the audience or the podium) say "a person on dialysis can't work." The people at my table were worried I may explode. But I took a deep breath, and then on a one-to-one basis, I spoke with people about the options that are out there. I described myself as an "Advocate for dialysis reform with PKD". I told my story, I pulled up my sleeve and I showed off my fistula. I recommended them to online sites Home Dialysis Central, Kidney School and IHD. I was in a room with 100 socially charged advocates for a debilitating kidney disease, and I found myself correcting misinformation. That was my real lobbying trip. Meeting with my Representatives and Senators, yeah, that is what they do for a living, they have a voter base to keep track of. The PKD Lobby's voice was heard, language will stay in research programs, and PKD will keep its finger in the pie, thanks to the preparation, research and organization of the Foundation and the leg work and passion of the volunteers.

But, our health care system is failing fast. Medicare and the sustainable growth rate (SGR) formula was poised to cut Part B physician payments 21% on March 1st. There has been a 30 day delay as of the time that I write this, but I'll tell you, nephrologists across the country are sweating bullets, wondering how they will be able to keep their practices afloat. There are so many issues that affect our daily existence with CKD-5. My advice, pick an issue, focus it, and let your voice be heard.

All Politics is local
My final leave behind to all of the people that I met on the Hill on Tuesday was the closing paragraph of my thank you e-mails, and that's how I'll close this post:

On a personal note, please, if you got anything from our meeting, just know that should anyone in your life be stricken with any form of kidney disease, it is not an immediate death sentence. Even though just a small percentage are eligible for transplant, and kidneys are scarce, there are GREAT therapies today and people are able to thrive rather than just survive on dialysis. My own personal mission is to let as many people out there know that they need not accept minimum treatment for kidney disease.