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October 23, 2009


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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

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

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

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.

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

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