Its time to be heard

Well, its down to the wire.  Your voice needs to be heard.  Now. The deadline is today.

If you have been watching the renal landscape this summer, you know there has been an incredible political firestorm over the most recent proposed changes to the provision of dialysis care.  And if you haven't been watching - trust me, its been an education.  But with all that has been said and done, the important thing now is for YOU to weigh in and be heard.  I promise you that many groups who have a stake in this have spent a lot of time and resources crafting their comments to the Centers for Medicare and Medicaid (CMS) on the proposed rule. 

But tell me - who has more at stake than you ?  You know how much has changed in the last few years. Your voice is needed to make things better. This is about your life and your health, and that of your fellow, as well as future, patients.  Its that critical. 

You don't need to be a public policy expert and it doesn't even have to take a lot of time.  Its about sharing your experience as a kidney patient, family member or person who serves the renal community with the people who need to hear from you at CMS.  Here's what you need to know:

First, the direct link for filing your comments is here: Comment address

Second, start your remarks with this reference: CMS-1526-P  This tells CMS that you are talking about the proposal regarding dialysis care.

Next, there are three basic areas of concern:

Home

CMS specifically asked for comments related to home and self dialysis, because they would like to see more availability of these options and more people have access to them.  Home hemodialysis especially is the only form of treatment that has outcomes equal to transplant. But they haven't done a good job yet at figuring out how to support more centers offering these choices, partly because of the time it takes for the training, and how to pay for that. Here is what they said: " We request comments on the elements of PD vs. HHD training sessions, specifically the costs of furnishing such training, the appropriate number of training sessions, and the duration of the training sessions." 

If you have - or maybe especially if you haven't had - access to these treatments, this is the issue.  We need to ask CMS to dedicate resources to appropriately provide the needed reimbursement, an investment which in the long run results in better overall health and less hospitalization; that reduces cost.   Right now they reimburse for one hour of nurse's time - that is not enough.  Please ask CMS to adjust this to properly provide support for the increased availability of this treatment by answering their request.  

Quality

The next thing they propose is a set of measures to determine how good and safe care is for dialysis patients.  Here is the list of things they think is important.  One is a set of clinical measures; basically lab values:

o Hemoglobin Greater Than 12 g/dL

o Patient-Informed Consent for Anemia Treatment

     o Dialysis Adequacy measures:

      Kt/V measure for adult hemodialysis patients

      Kt/V measure for adult peritoneal dialysis patients

           Kt/V measure for pediatric hemodialysis patients

     o An arterial venous fistula measure

o A catheter measure

o Hypercalcemia  or high calcium levels

o Bloodstream Infection in hemodialysis

Then a set of measures just to be reported

o Anemia Management

o Pediatric Iron Therapy

o Mineral Metabolism

     o ICH CAHPS Patient Satisfaction Survey
      
     o Comorbidity

Here is what you need to consider: what is important in your care? Are they measuring the things that are important to patients and that make a difference in our health and our lives ?  Are you more than a set of lab values, and do those even begin to reflect your health and well being?  One glaring omission is a measure for a lower limit of hemoglobin - and without that, in the last few years, the average hemoglobin has gotten lower and lower, and people have needed more transfusions. That is not good for anyone who would like to be eligible for a transplant, and needs to change.  So ask them to do that - and to focus on good patient  care, safety and what will make a difference in your quality of health and life.  This is vital - these measures are important to be in place to help drive ever improving care - its the only thing that has helped make things better for patients.  That is what they are for - so how can they best do this ?  Centers that don't meet the measures are penalized, so they will work hard to meet them, as long as there aren't too many measures, which would dilute the effectiveness of any of the measures individually. Tell CMS what measures would be important to you.

Cost and Payment

And lastly, there is the payment reduction.  CMS has heard a LOT about this all summer, and believe me, they will hear a lot more in the comments.  But consider this - all dialysis is not created equal in terms of reimbursement.  We want access to safe, good quality, cost effective care that allows us to live our lives.  That comes at a price.  But what we can ask CMS for is to protect the most vulnerable patients.  Remember  that small, rural or independent facilities or those that serve a greater percentage of non-private insurance patients (those of us on Medicare and Medicaid - which is 85% of all dialysis patients) have a tougher time covering costs.  We want the reimbursement to fairly cover treatment for patients without creating a great big profit source for anyone - when lives and health are at stake, and the money is from Medicare, doesn't that seem wrong ?   Tell CMS that you understand that.  Ask them to continue their dedication to the Medicare benefit that allows about a half million Americans access to the care we need for kidney failure.

Again, remember, you don't have to comment on everything.  Talk about what is most important to you, in a way that is meaningful.  And if you would like more info, please go to the following links: 

Summary of CMS Proposed Rule for Changes to the Prospective Payment System and Summary of CMS Proposed Rule for Changes to the Quality Incentive Program

A last reminder - some words of advice from Dr. Suess and the Lorax, a book about making important change in the interest of the greater good:

“Unless someone like you cares a whole awful lot,  Nothing is going to get better. It's not.” 
 

Please make a difference.  Share your voice today.