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.




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