Dear Senators,

This blog post was made by Dr. John Agar on November 20th, 2014.
Dear Senators,

Dear Senators,

Chronic kidney disease (CKD) is one of the most prevalent and costly conditions to affect Americans. In particular, it is the final common pathway for diabetes—a condition all too prevalent in your country...and mine (Australia). Almost above all other populations, the US is diabetes-riven. Largely as a result, the US incidence and prevalence of CKD is at the top of the international tree.

While the treatment for end-stage kidney disease (CKD5) is kidney transplantation or dialysis, by the time patients reach CKD5 , the degree of cardiovascular damage is so great that less than ¼ remain medically suitable for transplantation. As transplantation is therefore not as effective an outlet as it might first seem, an exponential growth in dialysis has resulted—a growth that is unlikely to slow down any time soon.

On a per capita basis, dialysis is one of the most expensive medical treatments of all. Dialysis is ongoing—for life—for most patients. Its costs accrue, year upon year. While some other treatments may be more expensive per episode, nothing accumulates expenditure like dialysis.

Although I come from Australia, our data here look very much like your data. Our costs are like your costs. We get very little change from Au$100,000 per patient per year to keep each patient alive on dialysis. And dialysis patients can live for decades.

As the all-up costs are quite similar between the two countries, the annualized cost of the 450,000 patients currently on dialysis in the US would equate, in Australian dollars, to roughly Au$45,000 million. Correct this for the current exchange rate of US 85c to each Au$1 and the staggering cost to your national bottom line becomes clear.

Among all nations on earth, there is no other as close to the US in character, living standard, and lifestyle as is Australia. We are two peas in a pod! Well, we are, except for the way we manage healthcare and how we do dialysis.

Here, we wonder how could you have got dialysis so wrong? You are pretty good at most things… but, to be honest, you are not very good at dialysis—not good at all! Did you know that the risk of death for a US dialysis patient is almost twice the risk of death for a patient from Australia and New Zealand? That is not a good statistic.

On Capitol Hill, cost and outcome data rightly inform your prospective planning. But, poor dialysis begets poor data, and poor data underpin poor and erroneous research, so, poor research informs poor decision-making. Your decision-making is inevitably flawed. To be fair, you are not to know this. You should be able to trust US-generated data. Your decisions are made in the belief that the data that drives them is robust. But, to be brutally frank, much of the dialysis research data generated within the US is poor—very poor—and is generated from very poor dialysis practices. From outside the US, it seems clear that many of the misguided funding decisions from Capitol Hill have resulted from this unfortunate linkage.

Despite dialysis being an awful imposition on any person or family unit, there are ways to empower and restore rather than to strip away all vestige of personal dignity, and there are ways to optimally provide the chance to work, to remain part of both family and the community, and to ‘value-add’ rather than ‘value-use’.

Dialysis practice in the US largely precludes these life-style potentials.

In Australia and New Zealand, we encourage our patients—wherever possible—to do their own dialysis at home. In the US, you seem to do everything possible to enforce institutionalized care and to ensure the opposite . And, there are many US dialysis patients, past and present, who would resent my use of the word “care” when applied to center-based US dialysis programs.

We dialyse about 35% of our national dialysis pool at home …or, rather, our dialysis patients choose (and prefer) to dialyse at home and we facilitate this. Many of us (myself included) think that that percentage is still too low. In the US, home dialysis patients account for about 11% of your total pool.

Home dialysis costs are about ½ that of facility care. This is because the patients’ home is the facility and the patient is his/her own nurse, and as infrastructure and staffing costs are the most expensive components of any dialysis program, cost savings accrue.

But the social benefit is more important than the dollar saving. Home patients feel empowered—they feel proud of their achievement . They can self-dialyze when and how they wish. They are freed from the tyranny of center-based schedules. They can return to work and organize their dialysis around living and work commitments. Further, good data shows that well-managed home programs are safe, the documented risk of “misadventure” being far less than the corresponding in-center risk .1,2, 3,4

Home patients take very good care of themselves. It is in their interests to do so. Survival studies corrected for co-morbidity consistently show patient survival in home programs is nearly double that of center-based patients —whether in the US where minimal home care is delivered, or in Canada, Australia and New Zealand, where home care is commonplace. 5,6

When programs that cost ½ the amount but deliver twice the outcomes are working so effectively in countries outside the US, can you explain to me why lawmakers within the US have consistently incentivized the dialysis practice patterns and reimbursement systems that enshrine and achieve the very poorest outcomes possible for its dialysis-dependent citizens? In the US—informed by poor data—lawmakers appear to have bent over backwards to dis-incentivize home care.

To me, it is breathtakingly incomprehensible.

Perhaps we could host some of your lawmakers here in Australia. We could show you our programs first hand, have you talk to our empowered patients, arrange for you to visit them in their homes, let you see them at work, witness the light in their eyes, and feel the strength of their grip. Maybe that is the only way to change the course of the USS Dialysis Titanic.

Yours truly,
Prof. John Agar
(Nephrologist: Regional Australia)


1 Woods JD, Port FK, Stannard D, Blagg CR, Held PJ. Comparison of mortality with home hemodialysis and center hemodialysis: A national study. Kidney Int. 1996. 49: 1464-1470

2 Blagg CR, Kjellstrand C,M, Ting GO, Young BA. Comparison of survival between short-daily hemodialysis and conventional hemodialysis using the standardized mortality ratio. Hemodial Int. 2006. 10(4): 371-4

3 Jayanti A, Nikam M, Ebah L, Dutton G, Morris J, Mitra S. Technique survival in home haemodialysis: a composite success rate and its risk predictors in a prospective longitudinal cohort from a tertiary renal network programme. Nephrol Dial Transplant. 2013. 28: 2612-2620

4 Tennankore K, Nadeau-Fredette A-C, Chan CT. Intensified Home Hemodialysis: Clinical Benefits, Risks and Target Populations. Nephrol Dial Transplant. 2014. 29(7): 1342-1349

5 Marshall MR, Hawley CM, Kerr PG, Polkinghorne KR, Marshall RJ, Agar JWM, McDonald SP. The effect of home haemodialysis on mortality risk in Australian and New Zealand populations. Am J Kid Dis. 2011. 58(5):782-793.

6 Marshall MR, Walker RC, Polkinghorne KR, Lynn KL. Survival on Home Dialysis in New Zealand. Found at:
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0096847

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Comments

  • Peter Laird, MD

    Nov 25, 5:24 PM

    Thank you John. The relationship between Congress, CMS and the large dialysis organizations is an incestuous cabal at best.

    Reason and logic such as your well written treatise continually has fallen upon deaf ears since the time of Scribner. It is clear that until there are more home dialysis options with competition among a number of viable home based machines, the hegimony of the last 4 decades shall continue unabated. Sadly, even this is under the direct control of the FDA which exhibits a complete lack of logic in denying the choices we need as dialysis patients.

    Shall this latest episode of the "Dialysis Twilight Zone" at some time come to an end and sound, physiologic dialysis become the new American standard instead of deadly business models of dialysis care? I can't answer that question. But what I do know is that thousands of American patients will continue to suffer and die needlessly at the hands of the CMS, LDO and congressional triumvirate of dialysis care until basic, physiologic dialysis care as described in 1975 by Carl Kjellstrand emerges in the hearts and minds of American nephrologists who instead serve there patients in a mindless manner filled only with what is "adequate."

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  • Dori

    Nov 25, 11:39 AM

    Nephrology News & Issues has asked to reprint this, so that will help get the word out. What would be best from a policy standpoint might be for individual dialysis consumers to send it to THEIR reps and ask for action. Or, consumer groups...

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    • John Agar

      Nov 26, 1:12 AM

      Thanks, Dori.

      As an 'outsider' ... NB: in 1977-78 when I did my post-fellowship time in Massachusetts, I was called a 'non-resident alien", a term I always found vaguely and unnecessarily derogatory ... I doubt if I were to 'send this on' anywhere that much notice would be taken of it.

      But, if US citizen consumers were to send it to their representatives, then, maybe ...

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      • John Agar

        Nov 26, 1:15 AM

        BTW ... I forgot to say that that is good news re NNI. Can you pass my thanks to Mark Newman, the editor of NNI.

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  • Steve Wimer

    Nov 20, 3:30 PM

    This is an excellent letter. Have you sent this material to the U.S. News stations? I'm sure both Democrats and Republicans will want to quote this letter to make their own salient points.

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    • John Agar

      Nov 20, 9:20 PM

      Thanks Steve ... maybe Dori's organization at Home Dialysis Central may forward it to the appropriate representative in the US Congress and/or Senate. I am not familiar with who they are - I just think that they should be taking more notice of this debate. It is not only in the interest of all dialysis patients that they should, it is also in the interest of your national purse.

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  • Lana Schmidt

    Nov 20, 2:24 PM

    yes I lived in NZ when I got good pastures and went on dialysis... They really push PD dialysis or home hemo with the big machines, they did not have Nxstage at that time.
    In NZ a lot of it had to do with the limited dialysis chairs in-center.

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