Every time the EPO reimbursement policy is changed it has an impact on those with kidney failure and living on dialysis. CMS’s EPO reimbursement policy has changed yearly since EPO was introduced and it is sure to change again. But it would be wrong to change the reimbursement policy for those on dialysis based on studies of people not on dialysis. People on dilaysis have unique needs.

The goal of Medicare when it proposes these reimbursement guidelines is an improved quality of life for those on dialysis. Looking at only stroke deaths or EPO costs gives an incomplete picture. Costs and downside risk are only a part of the equation; at this point I have not seen any discussion or comment about the benefits of this reimbursement policy, from the point of view of the dialyzor (the one needing dialysis).

Congress could, of course, mandate changes to EPO reimbursement policy to save money but would those savings be a good value?

Most of the Amgen-funded studies that justify higher hematocrits look at "soft" issues like attentiveness, energy levels, etc. The recent studies have shown an excess of mortality risk from hematocrit normalization. I've spent time interviewing patients in dialysis clinics. The majority of people suffered from severe co-morbidities that landed them in dialysis in the first place: uncontrolled hypertension, uncontrolled diabetes, HIV/AIDS, and chronic intravenous drug users. Many were also obese. They didn't need more energy. They needed treatment for their underlying conditions, which might allow them to live longer than five years average for Americans on dialysis (about a full year less than Europeans). Instead, CMS payment policy uses taaxpayer money to encourage the overuse of Epogen to raise red blood cell counts, which, on average, gives dialysands slightly more energy at the expense of slightly less longevity. Not a very good trade-off in my humble opinion.

You’ve conflated a number of issues to come to the conclusion that people on dialysis should be given less EPO. I contend that the high US ESRD mortality rate and your observation that the people on dialysis (that you have spoken to) are in rough shape is a result of the low dose of dialysis routinely provided in the US – 3x week/3-4 hours. Dialysis, per se, should not make you feel sicker than you are already are, rather it is inadequate dialysis that causes people to suffer through treatments, deteriorate over time and ultimately die prematurely.

The issue addressed by CMS’s EPO reimbursement policy is: what to do when ones hematocrit is over the threshold?

Should CMS deny payment? This would mean that a single lab reading would cause EPO to be discontinued, resulting in a hematocrit roller coaster ride for the dialyzor. Or should the provider taper the dose? By cutting the dose 25% the provider can get the hematocrit down to the threshold gradually. That seems reasonable to me and this is current CMS policy. Thomas’s and your beef seems to be that CMS doesn’t stop paying for EPO once a single hematocrit result comes back above the threshold.

If there was a financial withhold or penalty for having a hematocrit above 36 then providers would need to shift the entire Bell Curve down – so that rather than the mean being 36, 36 would be two standard deviations above the mean. You may not apreciate the energy needs of dialyzors but those needs are very real. Tens of thousands of people who dialyze are also working, they certainly have energy needs. But it isn't just those that are officially employed.

The idea that those with sever comorbidities do not need energy so much as treatment for their diabetes or high blood pressure is not a serious statement. Their life is hard enough without compounding the misery with low hematocrits.

Kidney disease is a great burden. That burden is lessened when anemia is controlled There is a tremendous difference between a hematocrit of 30 and 36. The tyranny of the Bell Curve means that to achieve hematocrits of 36 you need to be able to over shoot without penalty.

BTW dialsands? First time I have ever heard that term. After scanning the Google results it appears to mean what is on the other side of the semi-permeable membrane i.e. the blood as opposed to the dialyzor which is how I think you were using the term. Do you have a source to point to re: definition?

Merrill I am gratified by your avoidance of the word “patient” to describe generally people who dialyze. Here is my pitch for the term Dialyzor.

Dialyzor, as a new term, allows us to define what it means. I suggest: A Dialyzor is one who must accommodate a diminished renal function through dialysis and dialysis compatible living choices including diet, medications and exercise.

I think language is important. When I am in the doctor's office, the dialysis unit or hospital then I think the term "patient" is appropriate. However, the vast majority of the time I am not in a medical place of business. This, I believe, is the term patient’s fundamental flaw: in the US ‘patient’ indicates a business relationship. Living with CKD5 takes far more than establishing a handful of business arrangements.

The term ‘patient’ only really fits people with acute diseases. Outpatient dialysis is for a chronic disease. The term ‘patient’ fails to acknowledge the 90% of the time that the dialyzor is solely responsible for his or her care. The term Dialyzor applies 24/7. It applies when we are on dialysis but it also applies during the 70 to 90 % of the time when we are living our lives off the machine.

I know that there is an objection to the word dialyzor because it sounds too like the word for the artificial kidney, “dialyzer”, but I would prefer we keep dialyzor and instead say artificial kidney. If we call the artificial kidney the dialyzer then what does that make us? The dialyzee? That sounds too passive to my ear.

A dialyzor is proactive. A patient is reactive. A dialyzor does. A patient is done to. But I’d take dialsands over patient.