Beware What You Wish For, or How Good Dialysis Got Gazumped

This blog post was made by Dr. John Agar on January 12th, 2017.
Beware What You Wish For, or How Good Dialysis Got Gazumped

Do any of us still remember the history of dialysis? Perhaps a vanishing few of us do, but useful history is often submerged under a tsunami of papers and studies, hiding pearls from the past within the white noise of the present. Indulge me as I go back …

Once upon a time, home dialysis was the jewel in the dialysis crown. Home dialysis was what most dialysis patients were expected to do, and wished for. In 1971, home dialysis was performed successfully by nearly 50% of all dialysis patients. This was as true in the US as it was true in Australia and New Zealand. Indeed, it was true throughout the “first” world. Simply put, home dialysis was what dialysis was all about: keeping people at home, and sustaining them in work. 

True, dialysis was offered and delivered to an infinitely smaller prevalent population back then, for that was 1971, and speaking volumes about my current age, I remember this time. 1971 remains well within my personal dialysis delivery experience, and while being “present” in that time age-dates me, I wear my recall of that time with pride and with much sadness that I have seen it usurped by the development of corner-store practice: the McDonalds-ization of dialysis—dialysis under golden arches—and, increasingly, arches of corporate gold. But, dialysis is no burger-with-fries!

For many reasons, that older (and wiser) time when home dialysis was “what we did” still resonates in me. It has stayed my compass. 

For current professionals and patients alike, many of whom do not understand (or are unaware of) the sad procession of poor political decisions taken primarily through misunderstanding and/or misinformation by successive US administrations, it is prudent to pause and think about how and why the beast we call facility dialysis achieved its ascendancy.

To aid this recall, I will spend the rest of this blog attempting to condense Richard Rettig's seminal bio-medical paper from 1991, Origins of the Medicare Kidney Disease Entitlement: The Social Security Amendments of 1972.(1) Rettig’s paper is compelling reading. In my view, every, yes, EVERY trainee nephrologist should be made to read it. Every trainee nephrologist should understand (and few seem to) where it all went pear-shaped, to use a favourite expression.

But…have they read it? I bet not. True … and airing my own dirty linen here, through the late 70's and 80's, I, too, climbed aboard the facility bus...to my shame.

And, true, facility dialysis has allowed dialysis to become possible for a far wider clientele than home care then allowed—or could ever allow.

But, did we make any attempt to expand home care along with the burgeoning demand for dialysis—to offer it, encourage it, or fund it? No…not a glimmer of effort. Sadly also true: facility dialysis has strangled home care by offering an easier—yet lesser—option.  Was this truly our fault? Or, was it all just about money, driven by a combination of administrative misunderstanding of often-complex issues beyond their pay-grade, and fueled by corporate greed? Or, maybe it was a bit of both.

So, back to Rettig, which is possibly a timely visit, especially as the US Congress is likely to start making more wholesale changes (and, possibly, more errors of judgement) in coming months. I will (shamelessly) paraphrase and quote from Rettig’s seminal paper(1) but, please, read his awesome work in full, sometime…especially if you enjoy Machiavellian tales that are tall—but true.

1972 was a special year for US Social Security. It was Nixon’s second term election year, and Social Security was a hot topic. On October 30th, less than a week before the election, Nixon signed a hurriedly concluded Social Security Amendments Bill into law.

Two primary planks comprised the bill: a family assistance package, and a review/extension of Medicare and Medicaid. Active behind the scenes were the “big four” in US nephrology at the time: George Schreiner, Willem Kolff, John Merrill, and Belding Scribner—the father and greatest of all proponents of home dialysis .

At that time, kidney disease was jockeying for attention, as ever, with heart disease, cancer and stroke, but it was a time when the true marvels of dialysis and transplantation (then only possible for the kidney), were emerging from experimental treatments to become an aspiration for all with end-stage kidney disease.

At the 11th hour of the Senate debate and the passage of the entire Amendment package, the then most powerful committee of the US House of Representatives—the Ways and Means Committee—was under the guile and guidance of Wilbur Mills, an Arkansas Democrat. Bingo! An amendment to the bill—Section 2991—suddenly emerged…one that extended Medicare coverage to more than 90% of the population to those with chronic kidney failure, especially those then on dialysis. At that time, while the cost of individual treatment was high, the expected costs to the whole Social Security program under Medicare were relatively modest, given the small numbers then on dialysis.

Senator Hartke, also a Democrat from Indiana, was the only senatorial source of public information available. He was asked to estimate the potential costs to Medicare if dialysis was included, and, remember this was the 11th hour: the bill “had to get through” and be signed before the election.

The NKF, via Scribner in particular, who had flown to Washington to press the case for dialysis inclusion, provided Senator Hartke with “numbers.” Hartke was advised that of the ~50,000 Americans who had chronic kidney disease, ~20-25,000 were “candidates” for dialysis or other interventions (i.e., transplantation).

As the cost of dialysis was then estimated to be $22,000-25,000 per patient, per year for in-hospital dialysis, $17,000-20,000 for hospital-related centre-based care, and $19,000 for home dialysis in the 1st year—but $5,000 in subsequent years, with the costs of all options expected to fall in subsequent years with the promise of new advances,” the summative cost seemed relatively modest.

It was then a tradition for the Ways and Means Committee to hear any citizen who wished to address it. Engineered by “the big four,” and especially by Scribner, a 43 year old married dialysis patient, Shep Glazer, a man with 2 children (14 and 10) briefly dialysed in front of the sitting Committee, though they were unaware that as he did, he went into (well-disguised) atrial fibrillation and the session was truncated as a result. The Committee just thought the dialysis demonstration “was over.”

With the fiscally conservative Republicans calmed by the seemingly modest cost analysis, and the Committee buoyed and dazzled by the drama of the on-the-floor-of-the-house demonstration of what exactly dialysis “meant” to an individual citizen, Section 2991 was added to the total package, pretty much as “an afterthought.”

Now, while the whole process was much, much more Machiavellian than I have described here, this records the essentials of how the end-stage kidney disease (and dialysis/transplant package) came to be enshrined in the final law that went before Nixon for signing in the week before his re-election.

As we now all know, very odd things can happen when elections loom.

The estimates were, in hindsight, wildly short of the true mark for all three: incidence, prevalence and cost. The costs of dialysis did not fall, as was expected and promised, but skyrocketed. So, too, did the incidence and prevalence of ESRD, by a logarithmic factor of 10.

In addition, dialysis and renal transplantation were, at that time, the epitome of the technological advance of medicine. They were exciting, new, marvellous, and (then) largely American. They captured the public imagination, and the corporate eye. Moreover, it soon became obvious that there was money to be made from the public purse…and it was a purse that seemed bottomless and endless.

It wasn’t long before dialysis was being offered on a Henry Ford mass production scale: “throughput” became the mantra. Not surprisingly, home dialysis did not figure in this equation. No throughput there!

The aggregation of patients into corner-store facilities providing shorter and shorter treatment times meant that greater throughput could be achieved in any given period. The patient was lost in the scale and enormity of corporate dialysis.

Home dialysis withered and (almost) died, despite the clear data that confirmed its better outcomes. These data seemed, at times, even purposefully suppressed, and were certainly diminished wherever possible, by the corporate machine.

Chris Blagg, our greatest living doyen of dialysis, has well described to me Belding Scribner’s “what-have-we-done” moment as he reflected during his flight back to Seattle from those momentous days in Washington DC.

On the one hand, “Scrib” was buoyed by having succeeded in enshrining in legislation a public responsibility for the costs of dialysis. But, on the other, he saw clearly, even then, where this might lead…and that was to be ever away from his beloved home dialysis model, and into the jaws of corporate America.

And Scribner—as he usually was—was proven right.

Reference:

  1. Rettig R. Origins of the Medicare Kidney Disease Entitlement: The Social Security Amendments of 1972. Biomedical Politics: National Academies Press. https://www.nap.edu/read/1793/chapter/6

Comments

  • Charles Lewis

    Sep 11, 2018 2:16 AM

    In 1971 my father being a veteran and having renal failure we drove from Grove OK. to Oklahoma City Ok 3 times a week for Dialysis. At age 11 the VA trained me to operate one of the old Travenol machines in VA hospital and then we took one home and I operated it there for years until someone said it was against child labor laws and my dad had to go back to getting dialysis at the hospital. I was the youngest person in the U.S. to do this at the time. Did all my own sticking and can remember sitting around watching game shows with my dad most of the day and him asking for valium for cramps when we had to turn things up because he didn't eat right...lol

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    • Dori

      Sep 12, 2018 5:28 PM

      I was out of town, and am just catching up on emails, Charles, but I agree with John--we would LOVE to hear more of your story, and if you would like to write a blog, we would love to post it on this site! Either way, thank you for sharing your experience!

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      • Charles Lewis

        Sep 27, 2018 8:17 PM

        Dori,

        I found your site trying to find a path to the VA to get some information on the training I received from them as I have had it on my resume since early 80's and at recent interview was asked for the first time if I could prove it and I could not and had no certificate. I have emailed the VA a few times and they wont even reply...lol I was very surprised to see the information about home dialysis and would have thought this would be very common after 40 years and must assume the reason it is not must be monetarily oriented. Heck if a 11 year old kid could do it almost any adult must be capable especially after all the advances in technology. My story while appearing glamorous on the surface did not have a happy ending and losing my father one day in a VA hospital I had much resentment that I was not taking care of him at home and carried much guilt. Having my own home tutor at home for schooling while I did this ended abruptly and I never went back to school. I later joined the Marines just like my father and have made my way very well since and look back fondly now on the whole experience. I am sorry to hear all the advances in technology have not been applied in this field. I work in large facilities that are completely automated with no humans on site and cant help but think these same advances could have been applied to these folks circumstances. I thank you and John for your kind words and taking the time to reply. Time has erased most of the details associated with this but I would be happy to help you all in your efforts if there was anything I could do. After I was on the news for learning to do this it quickly became a competition to train someone younger and as I remember it I was dethroned by a young girl "9 years old" less than a year later!

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        • John agar

          Sep 29, 2018 2:55 PM

          Despite that you lost your dad, Charles, and regretful you suffered both blame for, and disbelief and disdain of your extraordinary contribution ... a contribution that must have filled your dad with pride, every day he lived ... your return to the arena, 40+ years on, attests to mark dialysis left on you.

          Not to recognise, value and uphold your childhood efforts is, bluntly, reprehensible. But, as you and I know, this is the world we now live in ... instant need, instant gratification, and instant disposal.

          But, even now ... maybe especially now ... your story should be told.

          I have suggested to Dori that she approach you , and ask you to tell your story as a blog ... then link to that blog to the HDC website and to the FaceBook page, so that others can learn what can be done, when a 10 year old boy loves his dad.

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    • John Agar

      Sep 11, 2018 11:07 PM

      I also remember training to use the old Travenol coils and baths in those years ... and to do that as an 11 year old is not only a standout achievement, but should be held up as an example of fine care and courage to those in administrative positions who question the abilities of patients and families to manage at home.

      As we say in Oz 'I dips me lid' to you, Charles ... or, in easier US language 'I take my hat off to you'!

      Perhaps the saddest part of your story is being told you couldn't do it. My guess is that you (1) got to be very good at it (2) were proud of the part you played in your fathers' care (3) bonded indelibly with your dad in the process (4) remain empowered, and stronger for the experience. A weighty thing to ask of a young boy, but a service I suspect you took to with single-minded intent.

      Again, well done!

      I know Dori would love to have you explore this journey further - perhaps in a blog.

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  • amanda

    Jan 14, 2017 10:54 PM

    Cool article! I am new to home dialysis, it took me almost a year of refusing in-center dialysis... so I am sitting in a large, PRIVATE room by myself while my training nurse goes to get something, and after I have a brief flashback of the beeping room with busy techs pressing mute buttons and reviving "patients" so they can get out the door and my own "near-misses", I think, why wasn't home dialysis the FIRST option? And I don't know how anybody survives the first six months in-center, I still have nightmares about it.

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    • Jeff Stumpe

      Feb 11, 2017 11:52 AM

      Thanks for the comprehensive history of dialysis in the USA. I was aware of the change in Medicare coverage in 1972 but unaware of its impact on home dialysis. I know only HHD. As a PKD patient diagnosed in 2002, my renal function declined slowly over 10 years, providing me with plenty of time to plan my ESRD future. Thanks to a progressive nephrologist and the Internet, I educated myself on the treatment options and selected HHD. I started hemodialysis with HHD training and have been able to continue to work full time and support business travel up to one week at a time using the NxStage System 1 cycler. I have treated in center when away from home for brief periods. While I am listed with two different transplant programs for 4 and 6 years respectively, the over 4-1/2 years on HHD, conducting a mix of daily and nocturnal treatments weekly has permitted me to maintain very good health to support active work and play life.

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      • John agar

        Feb 13, 2017 5:46 PM

        Thanks Jeff. Sadly, almost every US funding tweek since 1972 - until very recently - only served to further bias against home care. The disincentives were relentless. Sad, but true. Only recently has this begun to be reversed, though painfully slowly - a bit like pulling teeth. I am glad you seem to have been blessed with a progressive nephrologist who, by putting his patient before profit, settled you into the best dialysis option you could have. Hopefully the time will yet come when you get a call for a kidney, but till then, you are doing (and getting) the best dialysis option going round.

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