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.

Comments

[Miriam]

Thanks, Anna, for being a great advocate for us all.

[Richie Perl]

Great post, great job.
Let's hope the desired results are achieved!

[Anna Bennett Meinuk@aol.com]

Richie, I was hoping to see you there! NY had a good turnout though. I lobbied Maine and NY.

Best,

Anna

[somerville]

The reality of any phenomenon is not determined by what can be optimally achieved under special circumstances, but rather, by what typically happens. Since only half of all dialysis patients in the 18 to 54 year old range are able to participate in any organized activity such as education or work (L. Hall, et al, "Vocational Rehabilitation," Nephrology News Issues, vol. 23, no. 13, p. 22 (2009)), and since the typical diabetic renal patient in the 20 to 39 year old age group is only 8 years away from death on beginning dialysis, while the non-diabetic patient in that age group is only 20 years from death on initiation of dialysis (G. Danovitch, Handbook of Kidney Transplantation, Philadelphia: Lippincott, 2001, p. 15), it is obviously medically unreasonable to expect very good rehabilitation or quality of life among these patients. Even if these patients only suffered from anemia without the associated renal failure and dialysis burden it would be difficult to achieve rehabilitation, since anemia in men should be treated in the 130 range, yet on dialysis, men are magically expected to do just fine on a hemoglobin of 115. While improving dialysis technology and delivery can achieve marginal increments in quality of life, the decisive breakthrough for renal patients as a whole will only come when measures are introduced to make transplants more widely available.

[Anna Bennett Meinuk@aol.com]

Oh Stauffenville, how I missed you. Point taken, there will always be misery.... As I said once on IHD, I will always be a glass half full person, and you will always be a "those damn doctors stole half my water." I don't want the situation of optimal dialysis to be a "special circumstance", I want it to be the norm. Is that too much to ask?

Our differences aside, I am never going to deny that having a chronic illness is life altering and can be crippling, and yeah, you can miss work or not work, but getting the proper dose of dialysis can and has changed that for many, many people (myself included).

I find that typically, dialysis providers are profit oriented, a person gets less dialysis and less care subsequently feeling less than optimal - how could you have any quality of life in that scenario? I want to fix that, I want PD and more hemodialysis, nocturnal and home dialysis offered, I want patients to know that there is better out therapy out there. I also want more efficient and portable machines. (I have a very long list for the CKD Santa - and I've kinda been a good girl...)

I also find that typically medical professionals are too quick to write off CKD-5 as failure, and simply move on to try and help others if a person is unwilling or unable to have a transplant. And typically, the dialysis offered are the most profitable path of least resistance and are NOT optimal.

Transplant is in a good upward trajectory research and practice wise, with a lot of drama and a lot of advocacy and is a GREAT therapy for those who can have one. (You and I are the lucky ones), and there is hope that in the future more people will be able to be transplanted. (Let's find some money for FSGS research please? That is also at the top of my list - for solely selfish personal reasons)

BUT the majority of people out there in CKD-5 ARE NOT and WILL NEVER be eligible for transplant. What are you doing for them?? Other than in your comments, preach "abandon all hope unless you get a transplant", and reinforcing the END in end stage renal disease. I see your point, and I respect your opinion, I always have. Your cited study is about traditional minimal 3x a week dialysis. The other study shows living 20 years. I'll take that. I'd take that right now with my transplant.

You and I are fighting separate battles. It is not therapy versus therapy. For me, it is about making it better for everyone - not just those who are lucky enough to have a transplant.

[Gary Peterson]

Wonderful piece, Anna. It perfectly illustrates the pervasive "nocebo" effect in ESRD care, the power of negative beliefs. The largest dialysis providers and leading nephrologists do not emphasize patient employment and renal rehabiliatation as essential components of ESRD care. Yet to the patients, they are often the most important issues in their lives. I believe that history will show that the misapplication of Kt/V and URR was — and continues to be — a perfect formula for creating disabled and depressed citizens.

Current nephrology training is woefully lacking in these psychosocial issues and does not address the WHOLE patient. A shift in that direction could produce a significantly positive placebo effect, the scientifically validated power of positive beliefs.

[Zach]

Nothing like low expectations to keep us down!

[Anna Bennett Meinuk@aol.com]

Gary: THANK YOU! Really and thanks for the link love on Renal Web. I have to say that knowing you are helping to get the word out makes everything much easier. There is safety in numbers, and slowly, we are seeing progress.

And I agree Zach, it is low expectations. I do think that the minute that Stauffenville sees some merit in my argument, well, I may celebrate just a bit in my heart.

If I keep it in context, and don't get emotional, S. brings a great argument to the table. His well educated position is that of most of the dialysis professionals that I have encountered as a patient - it is an uphill battle.

[somerville]

The recent discovery that many older patients are in fact medically eligible for transplant suggests that the current high number of patients imagined to be medically ineligible is an artifact of the shortage of available organs. Similarly, until the mid-1920s, insulin was about as rare as transplantable kidneys are today, and at that time many diabetics were regarded as unlikely to benefit from insulin therapy, while today, with an unlimited supply, everyone who needs insulin gets it.

My main concern about the proposal that better dialysis delivery would significantly improve patient health is that this requires political clout to motivate the profoundly inert dialysis establishment. Since those with endstage renal failure are often debilitated, dependent on welfare, and represent only a tiny minority of about 0.001% of the population, their political influence is likely always to be low. In contrast, since transplantation proceeds individually, the political and institutional blocks to attaining good results with renal grafts are reduced.

[Anna Bennett Meinuk@aol.com]

I like the comparison to insulin, and I hope that kidneys are available to any that should want one 90 years from now. Or even sooner if we start the dialysis clock ticking in 1962 with Dr. Scribner and those amazing people in hmmm where was it...oh yeah, Seattle.

I don't see age as an issue right now, as the criteria just to be listed for a deceased donor kidney is so stringent (and the list is inflated anyway). From what I understand, a living donor and recipient have different age criteria center by center. (please correct me in the comments if I am wrong - I am woefully one-sided when it comes to this debate - but willing to be educated)

I don't see in-center dialysis going away in my lifetime. I see the American population getting sicker and sicker, and growing more and more inert every generation. BUT I do know that if I hadn't pushed for NxStage in my first unit - a 3x a week DaVita unit where I was suffering, I would have suffered and declined (and possibly lost my access) prior to transplant. My private insurance held me hostage to that DaVita unit. Sadly, Rogosin didn't accept my health insurance. 10 months after I started NxStage with DaVita, the State of NY closed the unit down for numerous health and safety violations.

When the DaVita FA said that she didn't want me going on home hemo, because that would leave the staff to take care of the sicker patients, I commented that staff should ONLY be taking care of the sick patients. There will always be sick patients who need professional care on an out patient basis and THAT should be the in-center dialysis industry. There is a large percentage of people who, if only they knew - could be living healthier lives on high dose dialysis, but the for profit units don't want to lose the "easy patients" that way they can keep their underpaid staff from burning out.

Anemia is a GREAT example of abuse in the for-profit dialysis industry - abuse that we now know could have detrimental cardiac complications. Here is my incenter DaVita anemia story. I have always been baseline anemic. Pre dialysis, I supplemented iron orally with chromogen forte - no need for EPO. My DaVita nephrologist stopped all my meds and put me on dialysis, pushed EPO and not iron, and didn't bother to check my ferr levels until I was wiped out, miserable and put up a fight. Just as I had known when my hair started falling out, the over use of EPO wiped out what was left of my iron stores. My private insurance paid a boatload of money to Davita for EPO, but dosing iron was not very profitable, so I suffered for a month. Me, who had worked at the Massachusetts General Hospital in their Acute Dialysis, CAPD and Transplant Unit. If I can be abused by the system - the mind boggles at what else is happening out there due to greed, bad practice and profit motivated policy and procedures.

In my lifetime, I would be happy to get 40% of people with CKD-5 on high dose dialysis (either PD, Nocturnal or Home Hemo). Let's look at the numbers then.

The transplant industry is in no way threatened by high dose dialysis - let's face it, it is currently the gold standard of renal replacement. I am a perfect example. I was on high dose hemodialysis for a year before my transplant - I got the best of both therapies.

And that profoundly inert for-profit dialysis industry, yeah it is definitely moving at glacial speed (their Lobbyists are quick though), I may not be moving it much, but I am going to keep on poking it in the eye, and reminding it that it should do better.