Kidney Care Quality and Improvement Act of 2005

I spent Tuesday and Wednesday of last week in Washington DC lobbying the Washington State delegation. I asked my delegation to support the Kidney Care Quality and Improvement Act of 2005 - Introduced in Senate as S.635 (enter Bill number) and introduced in House as H.R.1298 (enter Bill number). There are a number of good elements to the Bills. You can read a press release, and HDC’s Action Alert - things I like in the Bill are that the Bill would fund some CKD education and improve the reimbursement situation fistula v. grafts but the main cost of the Bill comes from ending the yearly inflation cut to the ESRD program.

The Congressional Budget Office “scores” Bills for ten years and HR 1298 and S 635 should score out to about 2.5 billion dollars over ten years. The cost comes from establishing an annual update framework for the medicare ESRD composite rate. Basically a 2.5% increase next year and 1% a year after that until 2015. That is reasonable - inflation certainly impacts dialysis. The ESRD program is the only Medicare program without an annual update framework - is that a good idea?

I’m going to work on this for at least a couple of months. I think the Washington State Democrats in Congress are on board, so I’m going to work on the three Republicans; if that works I’ll go after my neighboring Northwest delegations. Why should anyone care about the ESRD program more then us consumers? Without these Bills the ESRD program is looking at an additional 2.5 Billion dollar inflation cut over the next 10 years. How would that help patient care and choice?

I urge you to write your legislators. Put a face and a name with the Federal dialysis program.

Personally I think lobbying is fun. I’m getting into it.

Hey Bill that’s fantastic! Man, if I had the extra $$$ I would prolly be doing traveling like that and lobbying with an iron fist… :lol:

I think all of us on the board are behind this, if we can get the bill passed asap that would be really really good! Keep up the great work Bill!
Nice going…

Bill, How did you get into Lobbying. I wouldn’t mind doing a little of that myself.

I’ve been a Trustee of the Northwest Kidney Centers since 1997 - all five of my lobbying trips to DC have been on their behalf. This last trip five other consumers made the trip - among us we had over 130 years of additional life because of the US ESRD program (our ESRD history totaled 136 years but one member of our team started dialysis in 1966 - six years before the ESRD program was launched!). So one way would be to approach your facility and let them know you are interested in going to DC to put a face on the US dialysis program.

Another option is to hook up with the National Kidney Foundation. I’ve heard that they are looking to increase their grassroots advocacy - Dori do you have more information about the NKF effort? There is also WeCAN the Renal Support Network lobbying team. One of the members of the Northwest Kidney Centers lobbying team is also working with the Renal Support Network - she told me that they are going to be in DC in June. But you don’t have to go to DC to be an effective lobbyist.

That team member I told you about followed up on our trip by attending a community political forum on Friday (forty years of ESRD and she has more energy than 90% of the people I work with through the carpenter’s union) and who showed up but her Congressman Dave Reichert one of our Republican targets. She was able to tell him that she had met with his health aid on Wednesday in DC and she gave the Congressman our whole pitch. When we were in DC we had appointments with every office but not always with the actual member of Congress and Reichert was one we had not met. Chatting him up at a community meeting is huge, even if he doesn’t agree to sponsor the Bill yet, it greatly increases the chance that he will meet with us in person the next time NKC sends a group to the other Washington and we’ll get him then.

The team I went to DC with are in contact via email and we are going to try to get Congressman Hastings to sign on (if we get Hastings the other two will follow) by reaching out to consumers in his district. I think we’ll try to contact one or two units on the other side of the mountains - about a hundred and fifty miles from Seattle - and road trip. This will be a first so I don’t know how we’ll be received but hopefully we’ll be seen as renal brothers and sisters, as independent advocates. I do think that our Legislators listen to constituents.

Then there is the option of just informally getting together in groups of two or four and walking the halls of Congress. I think I’ll be back in DC in June again for NKC (not positive yet) and I’d let people crash on the extra hotel bed and/or the floor. It doesn’t have to be too expensive - I flew in on the red eye from Seattle I was tired the first day but lobbying is exciting enough that it can overcome a lack of sleep.

I didn’t dialyze while in DC - I dialyzed Monday, flew out Monday night, was a tourist on tuesday and Lobbied all day Wednesday and half a day on Thursday, flying home for dialysis Thursday night (looking at my first post I got my dates wrong - still catching up on sleep). Another member of the team set up dialysis and spent an extra day or two. I really think it helps to have a team, I am so energized after spending two days with the team. One of the team members quoted Margret Mead in his follow-up email:

“Never doubt that a small group of thoughtful citizens can change the
world. Indeed, it’s the only thing that ever has.”

Hey Bill, are you also on the board for Aksys or paid by them? :?:

The short answer is no. Why do you ask?
that is a link to a thread I started last summer about my visit to the Aksys headquarters and tells of the times Aksys has written me a check - twice for participating in nocturnal studies.

The Northwest Kidney Centers is a community based, all volunteer board. I am on numerous committees (3), task forces (2), boards (2) and councils (1) and my pay is all food based, half the time I’m fed while attending meetings. I work through the Carpenters Union, which means I’m hourly and I clock out 10 to 20 hours a month to attend these meetings during business hours. When I take three days off to go to DC I loose three days of pay. I am not complaining: my involvement with NKC is my favorite, most stimulating, and gratifying element in my work-a-day life.

Spending three days in DC with 5 other long-term kidney consumers was great - in my normal life I can’t spend days thinking about ESRD. I love the company I work for but it sure would be nice to be paid to think about ESRD (just as long as I can still bring my dog to work).

As Bill said, the National Kidney Foundation is recruiting 100 patients and family members for training and empowerment activities that will take place in Washington, DC on May 4-6 at the same time the NKF is having its spring clinical meeting. NKF will pay travel expenses for those who are chosen. There is an online form that you can use to submit your nomination at After this event, I’m sure NKF will still need to recruit people interested in advocating for kidney issues so if you’re not selected for this training (NKF only has funding for a limited number of travel grants), there will still be work to do.

The Renal Support Network offers an opportunity to patients that want to advocate through its WECAN Kidney Advocacy Network at Last year Lori Hartwell, a long-term patient, public speaker, businesswoman, and advocate, organized training for a new advocates and they’ve been busy ever since.

Even though Bill and others have gone to Washington, DC and met with legislators there, you don’t have to leave the comfort of your home to be an effective advocate. Write, email, or call your elected officials (state and federal). Visit with them when they’re in your area. Encourage your dialysis clinic to invite elected officlals to tour and talk with their constituents there. Tell your story and how you’ve been affected by kidney disease and how pending legislation could help you and so many others. Track bills and send support letters through the Legislative Action Center on Home Dialysis Central at To improve the chances of this bill passing, we desperately need as many co-sponsors on both the House (HR 1298) and Senate (S 635) bills as we can get. You’d be amazed to know how few letters it takes to make a legislator think there’s a huge groundswell of support for something. I totally agree with the Margaret Meade quote.

I like the technology available through the Home Dialysis Central web site. What I’ve heard from Legislators and their staff is that they want to hear from their constituants, they really do. I encourage you to take a long term view and try to establish a relationship with your Legislators and their staff, particularly their aides in charge of health issues.

The letter through HDC is great but only if you mean what it says. The revenue issues in dialysis, reimbursement issues hit a nerve with many of us because so much of our care and all of the supplies we use are provided/produced by for profit companies. When the Gambro/Davita deal is discribed in terms of “price per patient” I’m disgusted; it makes my skin crawl.

However, I believe we need to look beyond that and recognize that 85% of the people on dialysis have care under either Medicare (75%) or Medicaid (10%) and patients will be better served if the companies, even the for-profit ones, if the companies that organize our treatments have some revenue stability. I welcome discussing these issues I think they are important. I can provide the perspective of a “civilian patient” that is very familiar with the books of a provider. One thing I can tell you is that Medicare does not pay the full cost of care.

Hi Bill,
Are you going to the “People Like Us” Empowerment Initiative?
I just got a call from the NKF and my husband and I have been selected to go to represent the nocturnal group.
We look forward to this very much.
Pat :lol:

Pat, That is great! Let us know how things turn out.

Hi Marty,
Do you remember who I am. We go to the same clinic. Rubin.
Wasn’t sure you would remember.

Pat that is great!! I decided to not apply - I’ll be in DC twice in June - but with each passing day I find myself more and more wishing I was going. It would be fantastic to be among 100 kidney advocates.

Pat I hope you will write your experiences - maybe keep a journal - and post them here. I would be very interested in all details - what training you get, any pre-trip info… a minute by minute account of your actual visit :slight_smile:


Pat, Sure do know who you are and am very glad to know another nocturnal patient at the Rubin is digging in their heals to get improvements.

Hello everyone-

I was just wondering how many of us will be at People Like Us…

I haven’t posted much, but I read the boards frequently and can’t wait to meet as many of you as possible!

Merribeth aka headbandgrrl

Sometimes things do work out. Today the official web site:

listed Congressman Hastings as a co-sponsor. The NKC DC team worked hard to get Hastings - we made three trips to his district, set up two radio interviews - one for an hour/the other for an half hour, visited patients at a unit in his district and met Congressman Hastings’ health aide for a tour of a unit in Yakima his district’s biggest city. I have no idea which if any of our efforts is the one that got Hastings to sign on but I feel good that we worked as a team and tried what we could think of trying.

Our next step is to leverage Congressman Hastings’ support and get the two freshmen Washington State republican representatives to sign on to the Bill. I think they will look to Hastings (the senior republican in our state) on this issue so my prediction is that we’ll have all Washington State representatives - 9 House members and two Senators - signed on by the end of the month.

I hope this motivates you all to keep trying, particularly if you can reach out to republican members. Doc Hastings is a fiscal conservative this should not be a partisan issue.

When at first you don’t succeed… I just saw on that Congresswoman McMorris has agreed to sign on to HR 1298. McMorris, a freshman Republican from the Spokane area – about 270 miles from Seattle - was the last holdout among the Washington State delegation. That other Freshman Republican Rep. Reichert signed on back in September.

All the Credit goes to my friend and transplantor Sharon who spent the first part of the week in DC lobbying with Lori Hartwell’sWeKangroup. Sharon called and set up all of her own appointments and got a face to face with the Congresswoman. I have had two or three meetings with McMorris’s aid but never with the Congresswoman, so right from the start Sharon’s visit was a break through. I am now very optimistic that we can get some traction with McMorris on other issues … like HR 5321.

WeKan overall had 20 or 21 dialyzors and transplantors fly in this week … they had over 100 meetings. All of these meetings were set up by the WeKan members themselves – self directed lobbying, true grassroots
WeKan is Astroturffree!!!

Here is a little more Washington State bragging

Five states have both their Senators on S635:

Of these five states here is their: <number of representatives to Congress> and <<the number cosponsoring 1298>>:
Washington <9> <<9>>
Mississippi <4> <<3>>
Arkansas <4> <<2>>
Georgia <11> <<3>>
Minnesota <8> <<2>>

Only Washington State has everyone in their Washington DC delegation signed up!!! Eleven for eleven.

Some states may be lacking only a single Senator and some states have more people signed on because their delegation is so big. For instance California with over 50 members of Congress has 19 members signed on, New York has 12.

Let me know how close your state is to having everyone on board. There are currently 154 House cosponsors let’s get to 170. YouCan

Hey Bill, do you have a full listing of all lawmakers that signed up?

Hi Gus - go to the that link and enter either the bill number: 1298 for the House and 635 for the Senate OR enter the word “Dialysis” and you’ll see the Bills in the search results.

Thomas links don’t work if you paste them, at least I can’t get them to work.

When you click on the Bill # you’ll get to the summary page, then click “Link to the Bill Summary & Status file”, then you’ll see a link to “Cosponsors (154)”.

Here it is (usually it is updated on Friday so check back):

Rep Abercrombie, Neil [HI-1] - 5/4/2005
Rep Ackerman, Gary L. [NY-5] - 5/3/2006
Rep Andrews, Robert E. [NJ-1] - 11/8/2005
Rep Bachus, Spencer [AL-6] - 9/29/2005
Rep Baird, Brian [WA-3] - 4/27/2005
Rep Baldwin, Tammy [WI-2] - 4/27/2005
Rep Barrow, John [GA-12] - 6/14/2005
Rep Beauprez, Bob [CO-7] - 4/12/2005
Rep Becerra, Xavier [CA-31] - 10/17/2005
Rep Berkley, Shelley [NV-1] - 4/5/2005
Rep Bilirakis, Michael [FL-9] - 7/18/2005
Rep Bono, Mary [CA-45] - 7/25/2005
Rep Boozman, John [AR-3] - 5/18/2006
Rep Bordallo, Madeleine Z. [GU] - 5/4/2005
Rep Boren, Dan [OK-2] - 7/13/2005
Rep Boucher, Rick [VA-9] - 10/6/2005
Rep Brady, Robert A. [PA-1] - 6/15/2005
Rep Brown, Henry E., Jr. [SC-1] - 6/14/2005
Rep Brown, Sherrod [OH-13] - 10/25/2005
Rep Burton, Dan [IN-5] - 9/15/2005
Rep Butterfield, G. K. [NC-1] - 4/5/2005
Rep Calvert, Ken [CA-44] - 6/9/2005
Rep Cantor, Eric [VA-7] - 4/8/2005
Rep Capps, Lois [CA-23] - 9/15/2005
Rep Cardin, Benjamin L. [MD-3] - 7/12/2005
Rep Christensen, Donna M. [VI] - 4/27/2005
Rep Clay, Wm. Lacy [MO-1] - 2/1/2006
Rep Clyburn, James E. [SC-6] - 3/2/2006
Rep Cole, Tom [OK-4] - 7/12/2005
Rep Cummings, Elijah E. [MD-7] - 4/8/2005
Rep Davis, Jim [FL-11] - 9/27/2005
Rep Davis, Jo Ann [VA-1] - 7/25/2005
Rep DeGette, Diana [CO-1] - 10/17/2005
Rep Dicks, Norman D. [WA-6] - 4/12/2005
Rep Doggett, Lloyd [TX-25] - 4/27/2005
Rep Doyle, Michael F. [PA-14] - 10/19/2005
Rep Drake, Thelma D. [VA-2] - 3/2/2006
Rep Emanuel, Rahm [IL-5] - 6/17/2005
Rep English, Phil [PA-3] - 6/30/2005
Rep Farr, Sam [CA-17] - 9/7/2005
Rep Fattah, Chaka [PA-2] - 12/7/2005
Rep Ferguson, Mike [NJ-7] - 5/17/2006
Rep Filner, Bob [CA-51] - 7/26/2005
Rep Foley, Mark [FL-16] - 9/7/2005
Rep Ford, Harold E., Jr. [TN-9] - 6/14/2005
Rep Frank, Barney [MA-4] - 6/29/2005
Rep Gerlach, Jim [PA-6] - 3/16/2006
Rep Gonzalez, Charles A. [TX-20] - 9/13/2005
Rep Goode, Virgil H., Jr. [VA-5] - 9/7/2005
Rep Gordon, Bart [TN-6] - 4/27/2005
Rep Green, Al [TX-9] - 7/28/2005
Rep Green, Gene [TX-29] - 9/14/2005
Rep Hall, Ralph M. [TX-4] - 6/6/2006
Rep Hart, Melissa A. [PA-4] - 6/17/2005
Rep Hastings, Doc [WA-4] - 9/7/2005
Rep Hefley, Joel [CO-5] - 5/10/2006
Rep Higgins, Brian [NY-27] - 5/5/2005
Rep Hinchey, Maurice D. [NY-22] - 4/28/2005
Rep Hobson, David L. [OH-7] - 9/27/2005
Rep Honda, Michael M. [CA-15] - 9/27/2005
Rep Hulshof, Kenny C. [MO-9] - 6/17/2005
Rep Inslee, Jay [WA-1] - 5/4/2005
Rep Israel, Steve [NY-2] - 5/4/2005
Rep Issa, Darrell E. [CA-49] - 10/17/2005
Rep Jackson-Lee, Sheila [TX-18] - 4/27/2005
Rep Jefferson, William J. [LA-2] - 3/16/2005
Rep Jenkins, William L. [TN-1] - 10/25/2005
Rep Jindal, Bobby [LA-1] - 7/12/2005
Rep Johnson, Eddie Bernice [TX-30] - 6/14/2005
Rep Johnson, Sam [TX-3] - 4/5/2005
Rep Jones, Stephanie Tubbs [OH-11] - 9/15/2005
Rep Jones, Walter B., Jr. [NC-3] - 7/28/2005
Rep Kildee, Dale E. [MI-5] - 4/27/2005
Rep Kilpatrick, Carolyn C. [MI-13] - 6/6/2006
Rep LaHood, Ray [IL-18] - 3/2/2006
Rep Larsen, Rick [WA-2] - 5/4/2005
Rep Latham, Tom [IA-4] - 7/18/2005
Rep LaTourette, Steve C. [OH-14] - 9/7/2005
Rep Leach, James A. [IA-2] - 6/14/2006
Rep Lewis, John [GA-5] - 6/14/2005
Rep Lewis, Ron [KY-2] - 6/29/2005
Rep LoBiondo, Frank A. [NJ-2] - 10/17/2005
Rep Lofgren, Zoe [CA-16] - 6/30/2005
Rep Marchant, Kenny [TX-24] - 7/12/2005
Rep Matsui, Doris O. [CA-5] - 9/13/2005
Rep McCarthy, Carolyn [NY-4] - 5/11/2005
Rep McCotter, Thaddeus G. [MI-11] - 6/14/2005
Rep McDermott, Jim [WA-7] - 3/16/2005
Rep McHugh, John M. [NY-23] - 3/28/2006
Rep McKinney, Cynthia A. [GA-4] - 5/11/2005
Rep McMorris, Cathy [WA-5] - 6/14/2006
Rep McNulty, Michael R. [NY-21] - 5/17/2005
Rep Meeks, Gregory W. [NY-6] - 5/25/2006
Rep Michaud, Michael H. [ME-2] - 3/2/2006
Rep Moore, Dennis [KS-3] - 5/25/2005
Rep Moran, James P. [VA-8] - 6/14/2005
Rep Nadler, Jerrold [NY-8] - 12/7/2005
Rep Neal, Richard E. [MA-2] - 6/9/2005
Rep Ortiz, Solomon P. [TX-27] - 6/17/2005
Rep Owens, Major R. [NY-11] - 4/27/2005
Rep Pallone, Frank, Jr. [NJ-6] - 6/9/2005
Rep Pascrell, Bill, Jr. [NJ-8] - 2/1/2006
Rep Paul, Ron [TX-14] - 4/27/2005
Rep Payne, Donald M. [NJ-10] - 5/11/2005
Rep Peterson, Collin C. [MN-7] - 9/7/2005
Rep Pickering, Charles W. (Chip) [MS-3] - 9/27/2005
Rep Platts, Todd Russell [PA-19] - 6/29/2005
Rep Pomeroy, Earl [ND] - 6/14/2005
Rep Porter, Jon C. [NV-3] - 6/14/2006
Rep Price, David E. [NC-4] - 4/8/2005
Rep Putnam, Adam H. [FL-12] - 5/23/2005
Rep Rahall, Nick J., II [WV-3] - 7/25/2005
Rep Ramstad, Jim [MN-3] - 6/21/2005
Rep Rangel, Charles B. [NY-15] - 6/21/2005
Rep Reichert, David G. [WA-8] - 9/27/2005
Rep Renzi, Rick [AZ-1] - 6/17/2005
Rep Reyes, Silvestre [TX-16] - 5/11/2005
Rep Reynolds, Thomas M. [NY-26] - 5/9/2006
Rep Rogers, Mike D. (AL) [AL-3] - 4/19/2005
Rep Ross, Mike [AR-4] - 6/13/2006
Rep Rothman, Steven R. [NJ-9] - 4/5/2006
Rep Roybal-Allard, Lucille [CA-34] - 2/1/2006
Rep Ruppersberger, C. A. Dutch [MD-2] - 6/14/2005
Rep Rush, Bobby L. [IL-1] - 12/7/2005
Rep Ryan, Paul [WI-1] - 7/26/2005
Rep Sanchez, Linda T. [CA-39] - 7/12/2005
Rep Sanchez, Loretta [CA-47] - 6/13/2006
Rep Saxton, Jim [NJ-3] - 3/2/2006
Rep Schiff, Adam B. [CA-29] - 4/8/2005
Rep Schwartz, Allyson Y. [PA-13] - 6/15/2005
Rep Schwarz, John J.H. “Joe” [MI-7] - 9/13/2005
Rep Sessions, Pete [TX-32] - 6/14/2005
Rep Shaw, E. Clay, Jr. [FL-22] - 7/12/2005
Rep Sherman, Brad [CA-27] - 11/16/2005
Rep Shimkus, John [IL-19] - 5/3/2006
Rep Smith, Adam [WA-9] - 4/12/2005
Rep Solis, Hilda L. [CA-32] - 12/13/2005
Rep Souder, Mark E. [IN-3] - 6/9/2005
Rep Strickland, Ted [OH-6] - 7/12/2005
Rep Sullivan, John [OK-1] - 9/14/2005
Rep Tauscher, Ellen O. [CA-10] - 5/4/2005
Rep Terry, Lee [NE-2] - 6/28/2005
Rep Thompson, Bennie G. [MS-2] - 12/13/2005
Rep Thompson, Mike [CA-1] - 6/21/2005
Rep Towns, Edolphus [NY-10] - 7/21/2005
Rep Visclosky, Peter J. [IN-1] - 6/9/2005
Rep Weller, Jerry [IL-11] - 7/19/2005
Rep Wexler, Robert [FL-19] - 5/4/2005
Rep Whitfield, Ed [KY-1] - 10/20/2005
Rep Wicker, Roger F. [MS-1] - 9/13/2005
Rep Wilson, Joe [SC-2] - 7/28/2005
Rep Wolf, Frank R. [VA-10] - 6/23/2005
Rep Woolsey, Lynn C. [CA-6] - 5/10/2006
Rep Wynn, Albert Russell [MD-4] - 3/2/2006

Thanks for the list, but the link is not working on my end…I get a “Sever Not Found” error…

Will try later…if not will look for an alternative site that also has the list?

my bad