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March 12, 2009

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Miriam Lippel Blum

It sure does. And shame on them for neglecting all of us on dialysis.

Roberta Mikles

Hopefully now people will realize, if they have not already, the corrupt (as I call it) environment that surrounds those with CKD 5/CKD 5 dialysis, transplant.

Roberta Mikles, RN
Patient Advocate

Zach

I guess the NKF needs to make KDOQI a more "sexy" topic for display in these convention booths. But then they would need to reconcile the fact that optimal hemodialysis is not included in those guidelines.

To quote KDOQI: "The Work Group emphasizes that the literature clearly supports delivery of a minimum hemodialysis dose of at least Kt/V = 1.2, but does not suggest what constitutes an optimal dose. Identification of an optimal dose of hemodialysis would require evaluation of patient survival, the patientþs subjective valuation of quality of life, and the cost-effectiveness of hemodialysis. Until such data are available, the Work Group emphasizes that the hemodialysis doses recommended herein are minimum values only."

John Davis

The National Kidney Foundation's record on dialysis speaks for itself. The fact that NKF did not have a booth at the Annual Dialysis Conference does nothing to diminish our record supporting dialysis professionals, patients and their families over the past few decades. For example:

KDOQI, NKF's comprehensive clinical practice guideline development initiative, has produced 15 dialysis-oriented guidelines since its inception in 1997. These guidelines continue to impact the quality of care received by thousands of patients in units around the country.

NKF has created hundreds of educational products and hundreds of patient motivation programs, including Hope Street, the first graphic novella designed specifically for dialysis patients. Hope Street is distributed to every dialysis unit in the country and has been heralded by patients and professionals alike as a powerful educational tool.

NKF empowers dialysis patients through the 30,000 member NKF Patient and Family Council and the NKF People Like Us patient advocacy movement which includes patient "fly-ins" to Washington DC that have enabled patients to share their stories with lawmakers and actually yielded the result of getting the pre-dialysis education act passed last year.

NKF's recently launched "End the Wait!" collaborative initiative to end the wait for a kidney transplant in the U.S. in ten years will benefit thousands of dialysis patients

Dialysis patients reap the benefit of ever-expanding support and educational programs that NKF continues to launch. Improving their health and minimizing related complications is top of mind as the foundation educates physicians on treating bone disease, blood pressure, anemia and cardiovascular disease associated with kidney disease. The health, quality of care and quality of life for dialysis patients has always been and will continue to be a priority for the National Kidney Foundation.

John Davis
CEO, National Kidney Foundation

Zach

Thank you for your comment Mr. Davis.

But what about optimal hemodialysis?
What is the NKF doing to promote it?

Thank you, in advance.

Bill Peckham

That's the problem. KDOQI does not correlate to the personal experience of people who get more dialysis. The reason people who get optimal-ish dialysis are disappointment in the NKF is because urea based adequacy measures are not what we need. Urea based adequacy measures let all the stakeholders off the hook, they make adequate acceptable.

It's time for the NKF to back up and rethink KDOQI in light of the impact it has had. Not in light of how the guidelines were intended but in light of how the guidelines have been put into practice.

As far as advancing transplant optimal dialysis does that by conferring a survival advantage on kidney transplants that are proceeded by high dose hemodialysis. Allowing transplants to last (and keeping people healthy enough to receive a transplant) all advance the NKF's stated goals as surely as increasing the total number of yearly transplants.

John what is your official position on the petition to ask the Congressional Kidney Caucus to ask CMS to routinely reimburse for 183 treatments a year? I would be very interested in your position and the reasoning behind it.

Peter Laird, MD

I believe that all American renal support networks should sponsor optimal dialysis since there is overwhelming evidence that grows daily on its benefit and NKF should have been at the one national conference reviewing evidence of optimal dialysis exclusively if they truly are our national kidney representative. Once again, John Davis of NKF has given us another example of our excuses for failing to support optimal dialysis here in America without once using the term optimal dialysis in their response to Bill's post when other nations offer optimal results instead of excuses.

Our national shame continues but could very quickly be overcome with the right mindset. I am not so sure that I would take so much pride in establishing the minimum requirements that have become the standard of American based care leading us to a last place international finish in dialysis outcomes. Have they become the solution or part of the problem? Just my opinion, but I would have hoped for more from an organization that is supposed to represent my interests in seeking optimal dialysis readily available throughout the entire western world except in the most affluent country, the United States.

When I was in medical school a couple decades ago, all I heard was the high standard of American care compared to the rest of the civilized world which in many ways was true. However, when will the leaders in this industry understand what all other nations already know, don't get kidney disease in America, you will die 2.5 times quicker here. They do dialysis much better in Europe, Japan and down under and in many cases likewise do better with transplant than America partly due to healthier transplant candidates maintained on quotidian regimens. It is time for a reality check at the top of our American patient advocacy organizations who do share a collective responsibility with those that actually prescribe dialysis, the nephrologists.

I must question who NKF and other renal organizations represent when they do not publicly advocate for optimal dialysis. Renal transplant is a sexy and popular advocacy position, yet, I have not seen any program or method that will supply as many donated kidneys in relation to the number of CKD patients exploding upon the scene. Once again, lack of interest and support of optimal dialysis shows the continuing failure to recognize that optimal dialysis and transplant are complementary and not competing. Better dialyzed patients live better and longer once transplanted and better dialyzed patients in other nations have a higher transplant rate. They go hand in hand with each other.

However, perhaps a year from now, Bill can report positively on NKF's support of optimal dialysis at the next Annual Dialysis Conference (ADC). While the End the Wait initiative may help thousands of CKD patients obtain a transplant in the next ten years, my question is what about the hundreds of thousands of patients that will die from usual in center dialysis that could benefit immediately from optimal dialysis care today without any wait?

Yes, while saving thousands, hundreds of thousands of people like me will be dying that could have lived on optimal dialysis as long as transplant if we only had ready access to it. In ten years, when the End the Wait accolades come for saving thousands, will you even remember the hundreds of thousands that could have been saved if someone at NKF had simply spoken to those that have the power to change this situation while saving our fiscally strapped nations billions at the same time? It is time to put into place optimal care and go beyond minimal care here in America.

It is time that the voices crying in the wilderness are met at the river by those with the power to change. It is time to end our national shame. By virtue of the influence of NKF by your own statements, it is time to come home to the people that will never have the benefit of a transplant. There are hundreds of thousands of us every year that fit that description. Our collective voices cry out to you. My only question is whether you will hear us?

Miriam Lippel Blum

Thank you, once again, Bill and Peter, for adding another strong and eloquent plea on our behalf. I want to see AAKP, and Davita Patient Citizens, and NKF do more in regard to dialysis standards. KDOQI was a start but it should be updated promptly as more evidence comes in and optimal dialysis should be the rule, not the exception.

Celeste Castillo Lee

I was dumbfounded by the recent posting accusing the National Kidney Foundation of not caring about dialysis patients. Being a person with end stage renal disease since 17 due to Vasculitis and having greatly benefited from the information and service opportunities provided to me by the NKF, I felt the need to respond. When I first started dialysis in 1983 during college, I immediately found resources in the NY Chapter of the NKF for newly diagnosed patients. Since then, I have continually been provided opportunities through the NKF to have my voice heard. For example, I returned to dialysis in 1995 after a great run with a transplant for 10 years. Being out of the unit for 10 years, I was horrified at the lack of consistent quality of care provided to dialysis patients. I contacted the NKF nationally and was put in touch with the health policy folks. They heard my concern (one that they had already identified as a key priority initiative) and educated me on their efforts for addressing the issue and how I could help them. From the very beginning the NKF made sure that the government paid for dialysis and transplantation, and through their KDOQI initiative they made sure that dialysis providers and health care professionals followed evidenced based guidelines to improve patient outcomes. Medicare guarantees coverage for all ESRD patients. However, because the program is so expensive, it is sometimes cost prohibitive for innovative research and development for dialysis.

As many of you read in a recent Time magazine article on kidney failure and access to insurance, Medicare is not the complete answer for preventing, diagnosing and treating kidney failure; it only comes into play once your kidney function is lost. NKF has worked tirelessly through its various patient constituency councils to raise the awareness of kidney failure through education, training, and community involvement. I have found three levels of support for a dialysis patient and his/her family that are most needed: 1) support, emotional and financial, which in my opinion, is best done at the community level (online, in your town, or unit); 2) education, through online communities, websites, brochures, working groups, listservs, dialysis units, and doctors’ offices; 3) changing public policy and legislation based on grass roots efforts to improve kidney disease research, prevention, treatment, and insurance coverage. There are 28 million of us who are affected by kidney disease. To raise one unified voice could not be done without the NKF!

If you and your families’ needs are not being met, let your voice be heard, get involved, take a stand for the issues that affect you or your family. Use your voice to demand change in our health care system and allow your passion and experiences to inform others. The NKF has provided me with that opportunity and thousands of other individuals. I am the chair of the Executive Committee of NKF's Patient and Family Council. I am very concerned about the state of dialysis in our country and have partnered with the NKF to lobby for change through their "People Like Us" program. It is imperative to me to use my 26 years of experience with ESRD to make a difference in the health and lives of other dialysis patients. The NKF helps me to make a contribution.

Peter Laird, MD

Thank you Celeste for your honest and open account. I beleive that Bill correctly observed that the focus of NKF and in fact all major organizations in America is slanted towards renal transplantation. An interesting question is why they did not have any presence at the Annual Dialysis Conference (ADC) after having such a large presence in November at the ASN conference. I believe it is a valid crticism especially when we consider the totallity of hurt that is still in place in our dialysis units today.

I don't believe DSEN has said that NKF has not helped CKD patients, nor have we stated that there are not many dedicated people working hard in the NKF such as yourself.

What Bill and others have said is why does the NKF not have a focus on optimal dialysis as they do for optimal transplant. KDOQI as others have correctly pointed out establishes the minimum requirements. Unfortunately, America has demonstrated that the minimum requiremets establish minimum results compared to the rest of the world.

Thus, our call, if the NKF has opening, publicly and aggressively addressd the need for optimal renal transplantation options, why have they not come out to support optimal dialysis options of which we have much in the way of evidence based medicine.

It is a dichotomy that Bill noted simply by absence of NKF at the only annual optimal dialysis conference that exists. They should have been there and it is our hope that they will be their next year. I would hope tha you would as well consider attending yourself. We still have much work left in the area of dialysis to end the 2.5 times higher mortality risk here in America than Europe, Japan and Australia.

For that which we believe the NKF stands firm, we have on several ocassions praised their efforts such as the two articles that I have written on their opposition to finacial incentives. Yet, it is our opinion that the NKF has not lent enough of their support and influence in obtaining optimal dialysis here in America.

Zach

Just out of curiosity, what are in fact the KDOQI-type guidelines in Europe, Japan and Australia?

Roberta Mikles

Celeste, as a Healthcare Patient Advocate, in all areas of healthcare, including dialysis, I, and as stated by others, are aware of the good that NKF has accomplished and so appreciate same. I also appreciate your post. However, in all honesty, it is my opinion (and other advocates and patients) that NKF should devote more attention to other areas, as well as KDOQI, to ensure quality safe care. I can tell you that I, personally, contacted NKF to hopefully encourage more involvement in ensuring that there was adequate regulatory oversight and enforcement of facilities, including but not limited to timely surveys. Additionally, offering my support and willingness to work with someone at NKF to accomplish better oversight. And, I state over and over 'that which the survey process finds often has been overlooked by facility staff', (as evidenced in many survey findings) therefore, the survey process can be utilized as a tool for improvement to ensure quality safe care. Even with the newly mandated QI program/committee, often existing problems/deficient practices, are only brought forth after an avoidable negative outcome. Additionally, many facilities, prior to the revised Conditions, were cited for not implementing their own policy and procedure to have a QI process, etc. Hence, the need for the survey process to take place. There are many practices, as we know, that place patients in a situation of potential or actual harm that are not specifically addressed in the K-DOQI guidelines. It would benefit patients if NKF increased their support for adequate oversight and enforcement of regs. And, lastly, if CMS can not carry forth their responsibility to ensure quality safe care, through one avenue of state timely surveys (new and existing facilities), then perhaps CMS needs to get someone else besides the States to oversee facility compliance. Or do we need a total overhaul of CMS?
Roberta Mikles, RN, Director, Health Care Patient Advocates RMiklesRN@aol.com

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