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March 18, 2010


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Dori Schatell

I also thought this was very odd, Bill. The comment period is over, so CMS is under no obligation to review this letter, and as you've pointed out, Congress isn't going to lobby against its own legislation. And not including home training seems counter to the interests of patient choice. Not sure what the background was of this, but it's very strange...

Rich Berkowitz

Curious indeed. Although the issues raised in the most part were talked about last year at the Town Hall and Comment Period, the absence of a discussion about home dialysis is stunning. If there was ever one area to change in the dialysis community it would be to drive more dialyzors home. What's needed is more optimal dialysis, not find a way to only pay for less adequate treatments. It's true dialyzzors' co-payments will be affected, and we spoke against that earlier. But there are better ways to deal witht the situation. Obviously we don't want providers to go broke in treating dialyzors, but nor do we want the cost of meds to go unchecked as well. Providers can alleviate the impact of meds by moving more dialyzors home, preferibly nocturnal. Then binders and calcimimetics arent't the problem it is today. That's not to say the letter doesn't raise a valid point. It does. But it's also in the vacuum of reqally doing what's best for dialyzors. How the letter talks about everything but home is amazing. One has to question what their priorities are. The reality is there must be some cost containment. It's not a perfect world.

It also seems any changes from this point on regarding the CMS's final rules will have to come from legislative action. I agree that CMS was not charged with including meds in the bundle, but as Bill suggests, the Senate version of Health Care "Reform" specifies the issue should be studied. Of course, that also imples a bill will be finally passed.

From a strategic standpoint, it's probably too late in the game to try to influence CMS anymore than what occurred during the Comment Period. That's not to say continuing education should not occur. It should and it must. But any education also must include home dialysis.

Bill Peckham

The last sentence of the second paragraph is galling:
It is critical that the Agency fully evaluate all relevant data and thoroughly consider the comments on the draft regulation that were submitted by organizations representing dialysis consumers, including the undersigned.

This is hard to take. Many of us worked very hard, in a very time consuming way, as volunteers, to get our fellow dialyzors and their loved ones up to speed on the elements of the PPS. I personally worked via several time consuming ways, to provide information about the PPS to people who use dialysis. And they responded by learning about the arcane world of Medicare reimbursement for dialysis and provided CMS with their carefully considered thoughts

This effort by me and others, and in fact by signatories of this letter, resulted in very good comments to CMS. The comments made by dozens of dialyzors and those that love us were thoughtful and actionable. They were written by people who had taken the time to understand what was being proposed - that was not an easy thing to do. That took real effort.

Reading through every public comment it is very clear which stakeholder group has the firmest grasp on the details of the proposed rule. Aside from the professional associations the most substantive comments were made by us. Not by the "organizations representing dialysis consumers".

These organizations wanted "dialysis consumers" to engage. We did. Hopefully CMS is appropriately weighing our positions. I think Congress should as well.


It's time to create the "Renalist Institute." :)

Roberta Mikles

To recall, we did ask CMS to postpone any determinations until we know what the health reform bill states and how this will affect dialysis patients. It is unfortunate that this PPS had to be brought forth at such a time that simply might conflict with the health reform bill.

Roberta Mikles, RN BA
uncompensated Patient Safety Advocate

Bill Peckham

The PPS and the health insurance reform bill are pointed in the same direction. The bill imagines CMS savings through greater use of bundling not less.

On the one issue of including oral meds the bill offers welcome clarity. It directs the head of the GAO to study their inclusion. If these groups are worried that CMS will decide that the GAO can do a retrospective study rather than a prospective study than that is where they should direct their advocacy efforts.

I think there is too much at risk to rely on the findings of a retrospective study, a study that looks back on what has happened. It would be better for beneficiaries if the GAO undertook a prospective study that looks at the likely consequences of action.

That would be timely and actionable advocacy. That's not what's in the letter.


we are going to have two new dialysis center by satellite dialysis in our area. The nephrologist is going to be a partner and invest in the new center and at a recent meeting all they were talking about was how profitable it will be when this reform goes through with many new insured patients! Until profits are taken off equation, the real substance will not be relevant. To all those who opposed this reform,it because health care industry put profits before patients that our deficits are growing, high time to create efficient evidence based care.

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