My comments to the CMS Town Hall meeting on ESRD Prospective Payment System Proposed Rule

By Bill Peckham

I was given the opportunity to present oral comments to the CMS Town Hall meeting today. Speakers (PDF link) were limited to five minutes and many of hit us the same points. I hope to be able to post and/or link to some of the other remarks, here are mine (lightly edited):

Good morning everyone. I wish I was there with you but I am grateful for the accommodation that is allowing me to address you from my home. I'm Bill Peckham.

I have been a Medicare beneficiary due to ESRD since July 1988 when at age 24, I received a kidney from my oldest brother.

My underlying condition - FSGS - recurred in the transplant; I started dialysis in September 1990. After first dialyzing incenter I switched to home dialysis in September 2001. At home I enjoy a healthier, more frequent dose of dialysis. I currently dialyze five nights a week, over night, while I sleep.

I appreciate the opportunity to comment on the ESRD Prospective Payment System Proposed Rule. My comments are grounded in my belief that all Medicare beneficiaries with severe kidney disease should be able to live the lives they were meant to live but for their bum kidneys.

I know dialysis works. As I read through and thought about the proposed rule I asked myself:

Will this proposed rule increase or decrease the burden of dialysis on those who are ill?

After many hours of thought and deliberation, numerous conference calls and meetings … I don't know the answer. I don't know what all this rule will do but I have concerns. It is a big change! Including Part D medications?!? Really? As the kids say OMG.

I am a  payment policy hobbyist. This is my avocation, not my occupation. And this was a lot to evaluate. I am not entirely confident in my understanding of each of the many elements in this proposed rule. Some things I'm sure of; other things not so much.

First, the thing I am most sure of is the need for a separate home dialysis training payment modifier. Home dialysis training is not a routine service. It is expensive and right now access to home training is limited by insufficient training capacity.  

Including training in the base rate will further constrict access to home dialysis. Each training session should be paid at a level commensurate with the amount of one-on-one nursing time training requires.

Second I am confident  that this rule would be improved if covered labs were defined on a list rather than defined as those ordered by the MCP.

My nephrologist (who receives the Medicare Capitated Payment each month) should also be able to act as my primary care doctor. This came up this summer when I had a cancer diagnosis. I would not have wanted to endure the added appointments this proposed rule would have required. Non ESRD labs, drawn in the unit, should be paid outside of the ESRD bundle.

Having routine labs defined by a list would also better accommodate travel. Labs related to travel should be specifically excluded from the bundle – travel is important, please don't make it harder.
 
In general I think the complexity of the new rule will drive further dialysis provider consolidation, in an already consolidated industry. I think ownership diversity is healthy. I don't understand CMS's choice to define small volume facilities in terms of patient census rather than in terms of the size, and therefor the purchasing power, of the provider.

CMS should define “small volume” as units owned by providers who serve fewer than 1% of the total dialysis census. This would help slow the rush to oligopoly by giving truly small providers additional resources to operate under the new payment rule.

I doubt anyone can fully predict the impact of having dialysis units administer oral medications. It's too big a change. In the face of this uncertainty I urge Medicare to be constrained by prudence. Simplifying the rule would be prudent and also would help small providers cope with this far reaching change. Do not expand the bundle beyond what is required by MIPPA. Scale back the complexity.

This is an historic change that will guide and constrain the provision of dialysis for a generation. It's critical to get this right. I urge caution. Thank you.

Those five minutes went by fast.

I've long seen that dialysis provider size was a key factor in the move to expand the dialysis payment bundle. My belief in the value of nonprofit community based healthcare was in my mind as I spoke in favor of provider diversity. However, one of the speakers, Mrs. Diane Crafton, of Wheeling Renal Care, LLC, gave compelling remarks about the importance of supporting small providers that really spoke to the need to define "small provider" in terms of patients served or treatments delivered. A small provider should be a provider that delivers fewer than 1% of all dialysis treatments.

Comments

[roberta mikles]

Bill, you (and, Rich and Dori) did a wonderful job in presenting most important aspects. There is one thing that I would like to mention regarding home dialyzors. Considering the fact that incenter techs, and new nurses, receive classroom training/education, as well as having a preceptor on the floor, then ongoing supervision, this shows that training is crucial in delivery of a safe and effective treatment. So, if incenter staff are afforded this degree of training, then why are home dialyzors not afforded the same. Then, consider another point -- looking at dialysis facility survey reports, one sees deficiencies that indicate there is not enough training and education, as well as perhaps unit level supervision. This, in our thinking, only supports stronger the need for a home dialyzor to not only have initial training but to be able to have additional training throughout their home dialzying life process. This is about a home dialzyors life and staying alive. Staff in facilities have all types of backup from other staff when a problem arises. Home dialzyors do not have this same luxury, therefore, only MORE imperative that home dialzyors have the training throughout their life time. The home dialyzor becomes the dialysis technician, the water technician, the nurse and does all that each and every staff in the facility does. The way this can be accomplished is to reduce greatly the initial percentage that is given within the first four months and spread it out over time. Then, add another adjuster so that home dialyzors can have the availability of additional training when needed e.g. to trouble shoot, problem solving, etc. The bottom line is that those with kidney failure must be able to have the same quality of life that those without kidney failure have. Home dialysis has proven to be far more effective than incenter 3x/week. Therefore, we must support the lives of those who have taken on this great responsibility of doing their own treatments.
From the Legislative Action Committee Members of Advocates4QualitySafeCare
www.qualitysafepatientcare.com

[roberta mikles]

P.S. (sentence left out, sorry)
We support an adjuster so that home dialzyors can have training from the beginning of making their decision for home dialysis until they no longer do home dialysis, that this be an ONGOING PROCESS OF AVAILABILTY OF TRAINING/EDUCATION.
From the Legislative Action Committee Members of
Advocates4QualitySafeCare
www.qualitysafepatientcare.com

[Roberta Mikles]

Added thought as we receive many emails with questions------
Should CMS hold-off on this proposed rule until we know more about President Obama's health care reform package? We do not know, for sure, what is in the new health care reform, as an absolute. Will this new health care reform affect dialyzors? We do not know, for sure, the answer to this yet. Therefore, is it not prudent, on behalf of CMS, to wait? We think it might be the best avenue to travel at this crucial time when such drastic changes are being made. We understand MIPPA requirements, etc., however, what is truly in the best interest of patients? Or maybe, just a few areas, or one, should be implemented e.g. inclusion of Epogen in the bundle
Legislative Action Committee Members
Advocates4QualitySafeCare

[Erich Ditschman]

Nice job Bill. Thanks for doing this for the few thousand of us NxStagers.

Just a note, Roberta. I'm finishing up my fourth year of home hemodialysis. I've never needed additional training since my initial three weekstint. A year ago I switched providers so I could do nocturnal because DaVita doesn't believe it is worth it yet. Then, I had to do another week of training for the new facility but not for myself.

I suppose though, if a new machine or technology came along, for example a wearable kidney or the new Baxter machine, and I found my outcome would improve, then I suppose I would need additional training. Erich

[roberta mikles]

Hi Erich: I guess what we are thinking is that if problems arise, or there is a new partner to support home dialysis, or change in living arrangements that there is the needed retraining and education. A new partner could come on board at any time during the home dialysis journey. Also, after speaking with some it seemed like there were intermittent problems that required staff intervention e.g. problem solving. But, according to what you are saying we might change our position. Probably need to hear from more home dialyzors. Thanks much for the input.
Roberta

[Rich Berkowitz]

Roberta, you've made some very interesting points about the need for continuing training. But Erich is correct in not needing additional training. After a certain time it's the clinic nurses who should be getting their training from us.

NxStageUsers has also served that purpose for its members. We basically act as trainers for each other. We've helped numerous dialyzors to get over the hump of starting at home. I only wish I could have gotten the same support when I started. We also have members who have experimented with the treatment parameters to achieve a more optimized outcome. I do believe dialyzors should get as much training as possible -- from any source they wish. The clinic certwinly is responsible for the care of the dialyzor, but obviously with how training payment is currently proposed by CMS, I doubt if many centers will do what's right.

[roberta mikles]

Hi Rich: Thanks for the input. We are seeking as much information as we can from home dialyzors, as you all are the ones who know the best what you need. We noted what MEI (Dori) wrote re home training and we will definitely support that. Is there anything else that home dialzyors want that we should add? We want to be as precise as we can. We have many groups involved in our collaboration (non-dialysis groups focused on patient safety). Many collaborating advocates have relatives who might require dialysis and are interested in this proposed rule. Thanks, again
Roberta Mikles
Advocates4QualitySafeCare