NKF Off the Mark with End the Wait!

By Rich Berkowitz

The National Kidney Foundation has just launched a new initiative called End the Wait! It’s a worthwhile endeavor to expand the number of transplants. How could one disagree? As much as I think transplantation is a great cause and for many dialyzors the best form of renal replacement therapy, End the Wait's bang for the buck can only be limited.

On 6/30/08 there were 78,611 patients registered on the waiting list for a kidney transplant. According to a 2008 American Journal of Transplantation article abstract:

Growth in the number of active patients on the kidney transplant waiting list has slowed. Projections based on the most recent five-year data suggest the total waiting list will grow at a rate of 4,138 registrations per year, whereas the active waiting list will increase at less than one-sixth that rate, or 663 registrations per year.

As the waiting list grows, the number of transplants falls further behind the need (SRTR Graph), that’s for sure! Here is the number of transplants since 1997.

	Cadaver	Living	Total
1997	5084	3933	9017
1998	5339	4422	9761
1999	5386	4724	10110
2000	5489	5493	10982
2001	5528	6038	11566
2002	5636	6240	11878
2003	5753	6473	12226
2004	6325	6647	12972
2005	6700	6569	13269
2006	7180	6436	13616

Now compare that to the number of people on dialysis.

	In-Center Hemo	In-Center SelfHemo	HHD	CAPD	CCPD	Other PD	Uncertain	Total
1997	206,845	456	2,544	17,914	10,365	113	959	239,196
1998	224,547	355	2,484	15,941	10,541	96	1,033	254,997
1999	239,659	336	2,377	14,484	11,253	73	1,083	269,265
2000	254,735	268	2,180	13,274	11,894	67	1,095	283,513
2001	268,021	318	1,879	12,471	12,731	65	970	296,455
2002	280,095	273	1,756	11,590	13,692	73	930	308,409
2003	291,188	195	1,904	11,285	14,404	51	878	319,905
2004	302,325	187	2,059	10,896	14,752	43	880	331,142
2005	313,154	142	2,239	10,767	15,131	34	979	342,446
2006	325,188	111	2,455	10,415	15,667	32	886	354,754

Source: USRDS

The numbers of transplants are a small compared to the number on dialysis. How many more transplants will result from the NKF's additional spending? When you consider living donors are usually family or friends who don't need any additional motivation, the NKF's efforts can only really increase cadaver donations.

So where should the dollars go? It certainly doesn’t seem like transplantation is helping very many of those who have CKD5 and the prospects are not that much greater in the future, so maybe the dollars ought to go toward making dialysis the best it can be. Everybody that reads DSEN is aware that home dialysis modalities give dialyzors better outcomes and longer survival rates than incenter conventional hemodialysis. With the mortality rates as high as they are in the U.S., it’s unconscionable to ignore the modality used by the vast majority of CKD5 patients. Why does the NKF target their efforts just towards transplantation?

Perhaps promoting transplantation with the “Gift of Life” moniker is sexier than talking about dialysis; perhaps they’re marching to the beat of their corporate sponsors. Is the NKF's mission to assist those with severe CKD or serve the interests of its benefactors, and thereby insuring its own existence? Is this just one more reason why what the CKD community needs an organization which is free of corporate involvement?

Comments

[Peter Laird, MD]

I am still puzzled why America has such a dichotomy between transplant and optimal dialysis to the extent that many consider such ideas in a competitive fashion when in fact they are both complementary. For those that will eventually undergo transplant, daily dialysis gives them the best survival advantage.

Australia and other countries recognize this simple fact. The other issue is the reduced costs associated with healthier, optimally dialyzed patients. I am still completely puzzled on why America is still so far behind when optimal dialysis is cost effective and saves lives. Makes no sense to me at all.

[Mike]

More altruistic donors are coming forth and offerng organs not to just family and friends.

While optiminal dialysis should remain a goal, educating the public about the possibility of being a living donor is worthwhile effort.

[Peter Laird, MD]

Dear Mike, I cannot disagree with more altruistic donation whatsoever. However, let me take issue with your statement: While optiminal dialysis should remain a goal

Why the competition between the two that is implied in your statement. All at DSEN are active advocates for both optimal dialysis and moral transplant fostered by a healthy core of altruistic donations. Let me be emphatic, optimal dialysis should be the first line treatment option for all CKD-5 patients who are not able to obtain a preemptive transplant. Optimal dialysis should be the first line treatment option for all CKD-5 patients waiting on the transplant wait list. Optimal dialysis should be the first line treatment option for all CKD-5 patients waiting for an altruistic living donor transplant. Optimal dialysis should be the first line treatment option for all CKD-5 patients that are not on the transplant list.

Rich has spoken eloquently in his post: With the mortality rates as high as they are in the U.S., it’s unconscionable to ignore the modality used by the vast majority of CKD5 patients. Why does the NKF target their efforts just towards transplantation?

Mike, why seperate the effort between transplant and optimal dialysis since all CKD-5 patients, especially those heading for transplant benefit from optimal dialysis. Rich is 100% correct.

[Mike]

There was no implied competition. Yes, Rich is 100-per-cent correct. Silly me.

[Rich Berkowitz]

Mike, nor did I want to imply there is competition between the two. It's just where's the biggest bang for the bucks and how can one help the most CKD5 patients. Quite frankly, the longer one is on dialysis and makes the acquaintance of others, the more funerals one goes to and I'm tired of mourning my lost friends. I'm sure I would have been one of those statistics except I was able to start HHD just in the nick of time. I was fortunate to survive a heart attack driving home form an ordinary dialysis treatment incenter with my BP wildly fluctuating and too much volume to take off. As I rise on the transplant list I recognize I wouldn't even be in this position without going home first.

I went to last fall's NKF Gala in Chicago. I listened intently to the speeches. I never heard the word dialysis mentioned. Here I was a home patient who recognized the benefits I was getting from optimal nocturnal treatment. But I couldn't help but feel lonely as dialysis wasn't even recognized as the other 'Gift of Life', optimal dialysis that is. And how the NKF could be doing so much more good if only their priotities were different. How are we going to save more lives unless we educate more dialyzors and nephrologists? We can use all the help we can get.

Also, I want to mention I do think the NKF does valuable work, especially in terms of what it does for pre-CKD5 patients and those who don't even know they have CKD. But that's especially true at the chapter level. In Illinois, when my nephrologist was the Chair of the Medical Advisory Panel, the chapter put to work the KidneyMobile , which travels the state and does routine testing of kidney function of primarily poorer people who have less access to healthcare. They have been able to identify many who have been in risk of developing kidney failure, and they should be saluted for that work.

[Mike]

Your points are very well taken (and put), Rich.

I, too, have seen what a difference home dialysis can make and get equally frustrated when foundations and other groups put the emphasis only on transplantation and not enough on how to improve life for those on dialysis.

Equating the term "gift of life" only with transplantation is, as you suggest, just plain wrong.

Life on optimal dialysis, as Bill and others on this site have shown, can be a gift, too.

There is room to promote both optimal dialysis and more donors.

My best wishes to you and hope my previous comment was not misunderstood.

[Peter Laird, MD]

Thank you Mike and Rich for your replies. Whether not intended directly in either the post or the comment, the sad truth is that many in this nation blindly ignore optimal dialysis as another gift of life that it truly is to the demise of thousands of people every year. Rich is a living example as is Bill of optimal dialysis performed by an informed and competent patient. This saves lives, this saves money and this transforms lives that would otherwise lead to depression and disability. There is no down side to the optimal dialysis modality. Everyone wins with optimal dialysis, especially the patient.

Perhaps I am too sensitive to the parsing of statements which launched my prior comment, but in many ways, Bill continually challenges us on the use of our words that blur the meanings negatively. Bill challenges all to use CKD-5 correctly instead of ESRD which implies the end and terminal game for patients such as myself, Rich, Mel, Bill and Anna when in fact we all still have much life left to live if given the chance for optimal treatment. For Mel and Anna, that is the gift of life through transplant. For BIll and Rich, that is the option of daily home dialysis.

Mike, I appreciate your support on this issue, but I do believe that words matter. NKF can't even come to mention the word dialysis in a major meeting, and the other gift of life, optimal dialysis rests another day from a chance to prove its own merits by those that profess to be our advocates. I stand firm that any organization touting its advocacy for all CKD patients has failed miserably when they do not advocate for the one treatment option that can and should save more money and more patients than any other treatment option, optimal dialysis. The technology for optimal daily dialysis is proven, available and easily implemented without subjecting America to unproven and potentially dangerous changes in the definitions of life, the definitions of morality and the definitions of ethics that many in the transplant community call for.

Words matter. Bill rightly challenges all those that desire access to optimal dialysis to choose carefully how we approach these issues and the language that we use. The competing goals of optimal dialysis and optimal transplant allocation are played out daily by those that have control over these modalities. Words matter to them in hindering access to optimal dialysis by the words that they choose or more to the point, ignore. Our only choice is to fight them directly with carefully chosen words as well.

I would hope that is the way in which my prior comment is looked upon, a challenge to rightly divide our words carefully, for it is our only defense against the American hegemony of usual dialysis treatments in the battle for optimal dialysis instead.

Thank you for your support.

[Dori]

From what I've seen, many nephrologists--and folks with CKD-5 have the mistaken impression that a transplant: A). Is THE treatment of choice, and/or B). Unquestionably offers better survival than dialysis.

Potential downsides of transplants (diabetes or cancer caused by immunosuppressant drugs) or of living donation (difficulty getting health or life insurance in the future for the donor...) are glossed over or ignored entirely.

As far as unquestionably better survival, all of the folks who denigrate more frequent and/or longer dialysis on the basis of "no randomized controlled trials proving its benefit" need to acknowledge that NO RCT HAS EVER BEEN DONE PROVING THAT TRANSPLANT IS BETTER. All of those data are observational. Does that make the data worthless? Of course not! But we need to recognize the value of the observational data supporting better dialysis.

"Oh, but those daily/nocturnal patients are 'highly selected'" folks argue. Well, SO ARE TRANSPLANT CANDIDATES. In fact, if anything, folks who are eligible for transplant are the MOST highly selected group of all.

At this point, it seems apparent that the more kidney replacement therapy we offer, the better folks feel and the longer they live--whether that therapy is conveniently implanted so you can walk around with it (transplant) or is done every day or at night during sleep. IMHO, the NKF ought to be proposing better kidney replacement therapy--by whatever method--rather than focusing exclusively on increasing the numbers of transplants.

[Bill Peckham]

Amen Dori. Well said.

[Miriam Lippel Blum]

Great points, Dori. I'd like to point out regarding the "randomized control studies," that no one did randomized control studies regarding dialyzer reuse either but the profit lure was irresistable so the impact on patients' long-term health was not as important.

[Earl Silbar]

I'm an 'outsider' to this but I found Rich's piece both clear, factual and important. I do wonder what the 'corporate' aspects of this focus on transplants might be. In 'my' field (education), the corporate power/interests is both clear and dangerous to good education.

Earl Silbar, Chicago

[Zach]

Don't get me started with reuse. :)

[Roberta Mikles]

"""Rich has spoken eloquently in his post: With the mortality rates as high as they are in the U.S., it’s unconscionable to ignore the modality used by the vast majority of CKD5 patients. Why does the NKF target their efforts just towards transplantation?"""

In reading the above that was posted, I must say that I, and many others, have been greatly disappointed when it comes to NKF. Although there is much positive about NKF, which no one doubts, many of us wonder why there has not been more attention on delivery of care in facilities, e.g. ensuring, by supporting and showing action, that there is appropriate oversight and enforcement of regulations. Especially, considering the numbers of patients who receive treatments incenter.
Roberta Mikles, RN, Patient Advocate RMiklesRN@aol.com

[Miriam Lippel Blum]

Maybe we need to start a letter campaign to the NKF Board of Directors, one of whom is Dear Abby aka Jeanne Phillips.

[Ayu]

This is a nice sncuicct summary. But Dr. Beaulieu does not explain why she feels we should give darbepoeitin to people with hemoglobin lower than 100 g/L. Why should we? It appears to be dangerous, and diverts public money from more useful purposes, e.g. prevention of diabetes and other chronic diseases.I can't vote in the above poll, because it will NOT change my practice, since I've not been recommending nor prescribing exogenous EPO.Thomas L. Perry, M.D., FRCPC