RPA’s New Position Paper on Increasing Dialysis Options is Music to My Ears—Now We Need a Chorus!

This blog post was made by Dori Schatell, MS, Executive Director, Medical Education Institute on February 15th, 2018.
RPA’s New Position Paper on Increasing Dialysis Options is Music to My Ears—Now We Need a Chorus!

I hide it so well that you might not have noticed, but I am a huge fan of “intensive” hemodialysis (HD)—because of the preponderance of published evidence and my own extensive contact with people who are living better with more hours and days of dialysis. Short daily HD eliminates the so-called “Killer Gap” of 2 days with no dialysis (this gap is responsible for 10,000 American deaths each year, said Carl Kjellstrand in a keynote address at the Annual Dialysis Conference some years back). Nocturnal HD allows enough “membrane contact time” to remove toxic middle molecules that threaten nerves, joints, and bones and for intracellular water to shift to the interstitial space and then into the bloodstream. So, you can imagine how thrilled I was to find the RPA’s fabulous new position paper supporting patient access to these therapies!

In case you haven’t yet read it, the 11-page document offers five recommendations, is supported by 79 references, and includes gems like these (emphasis is mine):

  • “RPA believes that one size does not fit all in this regard and that a more patient-centered approach to the care of people with ESRD is needed. Delivery of care structures, reimbursement models and payment policies must evolve and move forward to meet this need.”
  • “Recent peer-reviewed literature suggests that clinical benefits are associated with longer and/or more frequent hemodialysis (HD). Furthermore, associations between longer treatment times (TT) and better patient outcomes have been documented by multiple investigators, in a variety of patient populations in the United States and elsewhere”
  • “Many believe that at least part of the high morbidity in prevalent HD patients can be attributed to the non-physiologic nature of the conventional thrice-weekly hemodialysis schedule, and thus there is continued interest in modification of the current standard thrice-weekly dialysis treatment schedule, during the day.”
  • “Four separate studies, including a RCT, have shown reduction in left ventricular mass index (LVMI) as measured by either echocardiography or magnetic resonance imaging.”
  • “Slower ultrafiltration rates (UFR), made possible by longer treatment times, have been linked to lower mortality.”
  • “Overall, daily hemodialysis is associated with significant improvements in net phosphate removal. With NHD delivered 4-7 nights a week, phosphate removal is approximately twice that of CHD.”
  • “If the emerging data on the benefits of more intensive hemodialysis are integrated into this analysis, then more intensive dialysis may be considered a ‘dominant’ therapy in that it is both less expensive and more effective than conventional in-center hemodialysis.”

Here’s the thing, though. This position paper was an updated version of an original written in 2010—that I never heard of. Given my daily immersion in the renal community, attendance at half a dozen conferences a year, and monthly searches of the published literature, that seems sort of baffling. But, the reality is, there are millions of messages all fighting to get through to us all at any given moment (a topic I blogged about several years ago, here.) If we don’t amplify important messages, share them, and make use of them for active advocacy, they will stay on websites as downloads and not have the opportunity change the world.

Personally, I think it is a big deal that “the advocate for excellence in nephrology practice” (per the RPA website) wrote and vetted this position paper through its committees and board, advocating for practice and reimbursement that would improve patients’ lives, help them live longer and reduce costs, just as I think it is a big deal that the CMOs of all of the major dialysis provider companies signed and published a letter advocating a “Volume First” approach in AJKD in 20141. CMS is finally paying attention to the ultrafiltration rate in U.S. HD patients, so a bit of change has occurred—perhaps as a result of these important efforts by nephrologists who care enough to try to improve the system.

More change is still needed. Despite obtaining the right for patients to be told about all of the options and where to get them in 2008, I still hear from patients who were not told. Reimbursement for more than three HD treatments per week is at risk from the Medicare Administrative Contractors (MACs), and meanwhile, busy physicians must still write letters of medical justification for additional treatments—despite population studies demonstrating drastically higher mortality after two days with no dialysis.

I can’t help suspecting that if the nephrology leadership like the RPA and the CMOs teamed up with patient advocate groups like Home Dialyzors United and AAKP to approach CMS…we just might get where we need U.S. dialysis to be.

  1. Weiner DE, Brunelli SM, Hunt A, Schiller B, Glassock R, Maddux FW, Johnson D, Parker T, Nissenson A. Improving clinical outcomes among hemodialysis patients: a proposal for a “volume first” approach from the chief medical officers of US dialysis providers. Am J Kidney Dis. 2014 Nov;64(5):685-95 ↩︎

Comments

  • Beth Witten

    Feb 19, 2018 6:08 PM

    I'm a strong advocate for employment of dialysis patients and I might be OK with extending Medicare Secondary Payer for employed dialysis patients if I wasn't afraid it would contribute to lower rates of employment and higher out-of-pocket costs for patients.

    Employment Discrimination:
    Years ago I reviewed a GAO study published in 1992 that touted savings to Medicare of extending Medicare secondary payer for longer and to more patients. The report mentioned and the lead researcher confirmed to me on the phone that some patients (and spouses in some cases) experienced various kinds of employment discrimination. Working patients reported being forced to resign or being fired. Job seeking patients were rejected for employment with health insurance (some were told it was due to high cost of dialysis and others were told their condition would affect work ability). Some patients reported spouses looking for work were rejected. In a few cases, patients reported their employers cancelled their health insurance while keeping insurance for other employees and a few reported employers cancelled health insurance for all employees. Some employers encouraged patients to drop the insurance or paid patient to drop it. See https://www.gao.gov/assets/220/217185.pdf

    High Costs of Dialysis Care:
    Employers know that dialysis care costs a lot. I've heard from patients and social workers and read posts about dialysis corporations charging their employer plans $80,000 or more a MONTH. I don't know what those plans actually pay or what the patients owe dialysis providers after employer plans pay, but patients could owe more if they don't have Medicare as a secondary payer. Patients may be reluctant to pay Medicare premiums if Medicare pays secondary. Their dialysis clinic staff may not tell them that under the assignment of benefits agreement with Medicare, dialysis clinics can't bill patients anything if they have Medicare Part B and the employer plan pays at least 100% of Medicare's allowed charge. It's likely the Medicare premium is less than what they would owe the clinic if they don't have Medicare.

    Finally, another reason why extending the MSP period might be a bad thing is that the ACA is in constant jeopardy. The ACA currently prevents insurers from placing caps on annual or lifetime benefits. Pre-ACA I knew dialysis patients who exhausted their health benefits due to high cost of dialysis, which has gone up even more since the ACA took effect. If the ACA is repealed, expect health insurers to reinstate caps and lengthy pre-existing condition waiting periods.

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    • Gary Peterson

      Feb 26, 2018 10:35 AM

      This position paper by nephrologists provides justifications for more dollars flowing into the control of dialysis providers. Most of those nephrologists have ownership stakes or profit-sharing stakes in for-profit dialysis provider corporations. These nephrologists are not offering to give up this revenue stream. Unless a financial mechanism is established to neutralize and/or balance this powerful incentive, these nephrologists will continue to act in their own self-interest at the expense of patients’ interests.

      Simply increasing the flow of dollars to dialysis providers will not raise the importance of the patient voice. It will not drive the development of the long-needed subspecialty of renal re/habilitation. It will not provide a stimulus to improve dialysis technology. It will not change the focus of mid-level management in the dialysis corporations. However, creating a financial incentive tied to patient employment can do all these things.

      I am aware of the problems that may arise with extending the MSP period. It will require a yearly financial cap. There may have to be exemptions for small business employers. A “higher-than-Medicare” rate is required to support renal rehabilitation and patient employment, but this rate is far below what the for-profit providers are currently charging commercial insurers. The non-profit dialysis providers would be an excellent reference in setting this rate.

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  • John Agar

    Feb 16, 2018 4:41 PM

    Dori
    I would love to feel as excited as you do - but I actuallly feel a bit hollow, reading this.
    Why?
    Well, the ‘why’ is because we (Australia and New Zealand) have taken this “longer, slower, gentler, volume matters most” approach for decades ... we have witten about it, we have pleaded for it, and in the process, some of us have grown old and tired of trying.
    Now ... like ‘hey, aren’t we great, we have just discovered the way to do better dialysis’ ... the lights have glimmered on in the US.
    So, yes, as you put it in your email to me a week or two ago, this is ‘huge’ - but in truth, I feel a bit sad to think of all those who have died .. especially volume deaths .. when they didnt have to, and all those that yet will, until US practice changes ... if ever it does.
    And yes, I do feel hollow. No references to our multiple ANZ-generated literature, few to the work of the Canadians, and no recognition of Japan ... three data-sets among the many that have pointed out the simple logic of longer, slower, non-profit oriented dialysis.
    It’s nice to see that glimmer of light, but - strangely - it leaves me feeling rather flat.

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  • Gary Peterson

    Feb 15, 2018 1:05 PM

    I would ask, why hasn't the RPA (or the ASN) publicized this?

    This seems to be an awful example of "Do as I say, not as I do."

    Too many U.S. nephrologists are financially invested in the minimal-dialysis model.

    We either have to remove those financial incentives ... or change them.

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    • Dori Schatell

      Feb 15, 2018 4:27 PM

      Since I am not affiliated with either of those organizations, I really can't say. It's certainly possible that a lack of resources to push out messages could be a challenge. I know as a small organization, MEI struggles with that. Or, perhaps the main priorities are elsewhere?

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      • Gary Peterson

        Feb 16, 2018 4:19 AM

        Talking to the professional nephrologist organizations about harmful effects of financial incentives is like trying to talk to the NRA about the harmful effects of guns.

        They ignore the fact that the largest non-profit dialysis provider has had better mortality and hospitalization data than for-profits for 14 consecutive years. Why is this never discussed at professional meetings? For whom do most U.S. nephrologists work?

        Why would virtually no U.S. nephrologists choose, for themselves or their family members, the dialysis treatment regimen that over 85% of their patients receive?

        Imagine the legal liabilities and professional consequences of admitting these hypocrisies. What happens to Australian and Canadian nephrologists who point out the obvious flaws in U.S. dialysis practices?

        This position paper may be concession to a minority voting bloc within the RPA. The lack of publicity likely reflects the preferences of the majority voting bloc.

        U.S. nephrology organizations and large for-profit dialysis providers will change ONLY WHEN the financial incentives are changed. The easiest and most productive change, in my opinion, would be to extend the Medicare Secondary Payer period for employed dialysis patients.

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