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Medicare Needs to Step Up, Ensure Patient Access to Home Dialysis Treatment | Commentary

As people whose lives have been touched by kidney disease, we are committed to making sure kidney patients have the chance to live a normal life on dialysis, something we believe wholeheartedly is made possible through home hemodialysis. With the support of members of Congress from both sides of the aisle, we have made some good progress — but there is more work to be done.

Over the past few years, we have repeatedly asked the Centers for Medicare and Medicaid Services, the agency that oversees Medicare, to expand access to HHD by fully covering HHD training costs. Members of Congress have also contacted Medicare on this important issue. Now, we are all anxiously awaiting the final rule impacting dialysis payments for 2015, hoping it answers the call from lawmakers and patients alike.

HHD training is no simple feat. In most cases, patients have no medical background and need to learn how to handle the equipment, monitor and clean the machine, order supplies and be prepared to deal with anything that might go wrong.

The training goes well beyond just learning the mechanics of a machine. Home dialyzors and their care partners need to learn how to place one or two needles into their arm (also known as self-cannulation), monitor blood pressure during treatment, keep records, and so much more.

While some patients learn faster than others, multiple studies have shown an average of four to six hours per training session, one-on-one with an RN, is required. Yet, Medicare covers just 90 minutes per session for this highly technical training. That is not even half of what is required and is simply not enough.

Since dialysis facilities are expected to write off the difference (thousands of dollars for each patient trained), most centers choose to not even offer HHD. As a result, many dialysis patients are totally unaware that HHD is an option while others, who are informed about HHD, do not have access to a HHD training facility.

This situation is beyond unfortunate. It’s unacceptable.

We believe home hemodialysis provides many dialysis patients their best chance for a more normal life. It has been shown to provide substantial clinical and psychosocial benefits including improved survival, increased transplantation, decreased left ventricular hypertrophy, reduced hypertension with fewer medications, less depression, improved quality of life, almost no recovery time, better sleep, and reduced restless leg syndrome.

Representing both the patient and care partner perspective, we have seen firsthand what these benefits equate to in real life terms. Many patients on HHD are able to work and travel, spend time with family and friends, and continue doing the things they love to do — prospects nearly unheard of with traditional in-center dialysis.

An often overlooked benefit to HHD is that working patients pay substantial taxes and do not collect disability payments. This fact alone should motivate better payment for home training.

All patients deserve the opportunity to experience this improved quality of life on dialysis.

That is the message members of Congress, patients and so many others have been sending to CMS, who has the opportunity to step up and answer our call right now. The agency is currently in the late stages of finalizing this rule — and while the draft did not address this issue, there’s still time to make things right.

CMS acknowledged inadequate training reimbursement as a barrier to access for patients as part of last year’s rulemaking process and said it would continue to monitor this issue. Now is the time to follow through.

To the numerous members of Congress that have stepped up and spoken out on this: thank you for your continued support! The dialysis community is grateful and hopeful our collective efforts will lead to meaningful change — but we aren’t done yet, and still need your help to see this through.

To CMS: On behalf of the nearly half a million Americans currently on dialysis (a number that is expected to double over the next decade), please fix the inadequate HHD training reimbursement as part of the final dialysis payment for 2015.

Jim Smith is chairman of Home Dialyzors United — the only dialysis patient organization dedicated to home dialysis — and has been doing home hemodialysis for more than 8 years. Denise Eilers is a member of the HDU Board of Directors, a registered nurse and former home hemodialysis care partner.

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