By Rich Berkowitz
I was so very glad I was chosen to be a speaker by CMS for the Town Hall Meeting. I'm sure everybody else who asked to speak had comments just as important as ours, and I'm sorry not everybody had a chance to speak.But I want to remind all that your written comments will be just as important as ours were today. In fact, more important since ours were not to be seen as testimony, but just remarks. We, too, have to send in our written comments. So let's please get serious in the coming days before November 15th.
Here are my remarks:
I’m Rich Berkowitz, the founder of NxStageUsers, the largest independent group of dialysis patients using the NxStage home hemo machine. I’m also on the NxStage User Advisory Panel.
Dialysis can be said to be akin to the storyline of The Lord of the Rings – at every turn lurks potential danger. Unless you’ve experienced it, you have no real idea, and numbers alone don’t tell the story.
I’ve been on dialysis since February, 2003. The first three years I dialyzed in-center and since then at home. I’ve experienced four modalities: in-center conventional and nocturnal, and home short daily and nocturnal. Home dialysis has saved my life. For many, in-center is an increasingly debilitating experience, and I can be proof that conventional dialysis is certainly not “adequate”. At least it wasn’t for me. Even though my labs were always within acceptable range I suffered a heart attack driving home from one of my dialysis treatments. The symptoms began over the long weekend.
When I started home dialysis, I went through an intensive period of training. There were initial problems once at home that would have probably been avoided if I had another week’s worth of training. In fact, I ended up hospitalized unnecessarily. I later learned my training was limited to three weeks because the dialysis manager was concerned about how much it was costing her department. That’s what happened when $20 was reimbursed for the training session when a nurse gets paid about $50 per hour. So my concern is not that training is to be included in the bundle, but that the allotted dollars have been insufficient in the first place.
One reason mentioned for the first four month 47.3% adjuster is the cost of initial home training. But the fact is approximately 85% initially start with in-center hemodialysis. Therefore, those funds will not be available for home training use for most patients. For that reason I would first like to see training remain outside the bundle and increased in its reimbursement, or alternatively have an accommodation made for more realistic training costs to be covered inside the bundle, such as an additional adjuster. Although I’m an existing home dialyzor, I’m concerned about new home patients getting the necessary training to successfully transfer home. It can also affect current dialyzors if their center has less incentive to continue its program.
Another great concern for home dialyzors – actually all dialyzors - is the inclusion of all dialysis meds. I don’t think I have to tell you how difficult or expensive it is for many dialysis patients to get Medigap insurance. Including all meds affects and discriminates against those who already have Part “D”. Also, patients, especially home dialyzors, may pay more out-of-pocket because they will be responsible for the 20% Medicare doesn’t cover, whether or not they use or need the meds. Another concern is whether providers will be able or willing to make available the most effective meds, which tend to be newer, and non-formulary. Regarding labs, the proposal is too broad in that it doesn’t define ESRD related labs, but allows all tests ordered by the MCP physician to be included in the bundle.
I want to speak briefly on the Quality Incentive Program. Adequate is such an ambiguous term. It has a different meaning to each person. To me, adequate dialysis connotes to be just enough. But just enough for what? Just enough to stay alive? Instead of adequate, the emphasis should be to optimize treatments. Make the treatments to allow people to lead more healthful and purposeful lives. Keeping them alive just to have another treatment is simply not enough.
Longer and more frequent treatments have proven to be more effective in optimizing outcomes. Therefore, whatever measure is chosen for the QIP, it needs to be applicable and adjusted for the treatment regimen. Home dialysis should not be inadvertently disincentivized – it is the superior treatment. In the future, I would recommend tracking, iron management, bone mineral metabolism, phosphorus and vascular access. Please consider hospitalizations, fluid overload, cardiovascular health, and overall survivability. Please allow the dialyzor’s quality of life to be the best it can. Thank you.