CKD Advocacy Groups Write Congress a Curious Letter. Why now? Why this?

By Bill Peckham

I'm happy to post this letter, as asked, from four leading CKD advocacy groups to members of Congress concerning the proposed Prospective Payment System for dialysis (PPS). These groups all represent themselves as speaking for those who use dialysis: Dialysis Patient Citizens, Renal Support Network, National Kidney Foundation, and the American Kidney Fund. However, I have to say that I find the letter's reasoning to be internally inconsistent, and I find their choice of issues do not reflect the priorities expressed in the public comments filled by commenters who self identified as dialyzors. 

DPC, RSN, NKF, AKF Letter

I would say that the top beneficiary issue is access to home dialysis; indeed sometime during the next several months would be a good time to ask Congress to voice support for home hemodialysis (HHD) and to ask CMS to encourage HHD in the final PPS but this issue goes unmentioned in the letter.

All four of the signers expressed support for fair home hemodialysis training reimbursement in their public comments to CMS (view all public comments, or download as an Excel file), yet in the letter to Congress this issue is conspicuously absent. The letter chooses to discuss: oral drugs, lab tests, an adjuster for African Americans, and ... a technical issue around a withhold due to the expected cost of providers who choose to phase into the bundle over three years. Come on.

First of all, how can you write a letter to Congress yesterday, this week, and not mention the health insurance reform bill? This signals obliviousness on the part of these advocates. In the left column of DSEN there is a link to The Hunger Site - you should click it. That's there to acknowledge that the provision of dialysis is not the most important issue facing society. The provision of dialysis is not the most important issue facing Congress. Or CMS.

This blog is focused on the provision of dialysis because it's important to me and people read DSEN because the provision of dialysis is important to them but let's not pretend it's the only thing that matters. The timing of this letter makes no sense to me; the content makes less sense.

The health bill that may well be signed by the President and go into law , in the next two weeks, contains the Senate language calling for the GAO to study the inclusion of oral drugs under the PPS. Why continue to bang on about CMS's lack of diligence in proposing oral drugs' inclusion when there is an obvious way for everyone to save face. Study the issue. Get it right. Support the concept of seamless care. These are not difficult positions to take. Additionally, the letter complains about the dollar amount being added to the proposed payment rate, that the amount is not enough to cover the cost of these oral drugs.

I don't think that is appropriate. No one has the full picture of what prices the providers could negotiate for these drugs. It is tempting to say it's not enough but how can you take a position when you don't have access to cost data? Part of my comment about including the oral drugs is that CMS doesn't have access to the cost data because it isn't being done. No one knows what it would cost to provide universal access to these important and useful drugs, so how can these advocacy groups take a position? Because of what they've heard? They should stay away from the numbers.

In general, I agree that the way CMS proposes to include labs is a problem but the way this letter makes the case raises questions. I don't think the primary issue is the copay - MIPPA clearly imagines labs are going to be included. The copay isn't that much and to the extent it is, the letter writers' complaint is with Congress not CMS. The letter is asking Congress to lobby against their own legislation. Tactically the problem is that that this letter raises the copay issue as an important consideration. This undercuts their next concern.

If lab copays are an important consideration. And if singling out ESRD beneficiaries to be the only beneficiaries responsible for lab copays is a problem. Why wouldn't those problems be problems with including a race adjuster? The race adjuster would mean higher copays too. ESRD beneficiaries would be the only Medicare beneficiaries subject to higher copays due to race.

Including a race adjuster could be said to levy a tax on people who self identify as African American. The additional copay due to the race adjuster could be $3 a treatment or more. Ten times the additional copay due to labs tests. The letter asks that "The final rule should not increase the financial burden of care on dialysis patients" but copays will necessarily increase for some people, while for others copays will be less.

This dynamic is in the nature of expanding the bundle and is due largely to the inclusion of EPO. The letter, after raising the copay issue, ignores the varying copay impact of the race adjuster as well as the numerous adjusters that the PPS did propose, in favor of bringing up an obscure provision having to do with paying for providers who opt to phase into the bundle over three years.

That is an odd choice. That is an odd choice for patient centered organizations. I think there is a far more important issue to ask Congress to support.

I believe that at least 10% of Medicare beneficiaries would be happier and better cared for, if they were dialyzing at home. I think the leadership of the four organizations that signed this letter believe that at least 10% of Medicare beneficiaries who use dialysis would be happier and have better clinical outcomes if they were using HHD. That's 40,000 people. The current home hemodialysis training capacity in the United States is less than 4,000 people per year.

When you consider the training needs to replace those who get a transplant or go back incenter we will never meet the true demand for HHD without a magnitude increase in the number of HHD training slots. For every current training slot we need ten. For that to happen CMS will have to create a fair home hemodialysis training payment under the expanded bundle.

Reading the public comments submitted by people who use dialysis, creating a home hemodialysis training rate is the most important change CMS could make to the PPS, yet it isn't even mentioned in this letter. I find that curious.

Comments

[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.

[Zach]

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.

[Ray]

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.