Polycystic Kidney Disease has plagued many families throughout the world, including my own. It often leads to kidney failure and a need for dialysis or transplantation. I was diagnosed with PKD at the age of 21 I never envisioned all that I would experience as life moved forward. This will be a journey of humor, sadness, desperation, love, frustration and all other emotions that come with spending a life bound to a machine you learn to love to hate keeping me alive. Blessings
A team from the University of Montreal Hospital Research Centre (CRCHUM) has discovered a novel link between chronic kidney disease and diabetes.
The researchers highlighted the surprisingly toxic role of urea, a nitrogenous waste product normally filtered by the kidneys and excreted in urine. “In patients with chronic renal failure, the kidneys are no longer able to eliminate toxins,” said nephrologist Laetitia Koppe, a researcher on the study. “Urea is part of this cocktail of waste that accumulates in the blood. In nephrology textbooks, urea is presented as a harmless product. This study demonstrates the opposite, that urea is directly responsible for impaired insulin secretion in chronic kidney disease.”
At the heart of pancreatic beta cells, researchers identified a particular protein, called phosphofruktokinase 1.
“The function of this protein is altered by an increase in blood urea, which occurs in chronic kidney disease. Increased urea causes impaired insulin secretion from the pancreatic beta cells. This creates oxidative stress and excessive glycosylation of phosphofructokinase 1, which causes an imbalance of blood glucose and may progress to diabetes,” said Dr. Vincent Poitout, principal investigator of the study and professor at the University of Montreal and the Canada Research Chair in Diabetes and Pancreatic Beta-Cell Function.
The study is important because it reveals a link and rather novel mechanism between chronic kidney disease and diabetes. “Further studies are required to validate these findings in humans. But if our observations are confirmed, it will mean that patients with non-diabetic chronic kidney disease are at risk of developing diabetes. One might then suggest therapeutic approaches, such as taking antioxidants, which may protect pancreatic beta cells and reduce the risk of developing diabetes,” said Poitout.
Zbylut Twardowski, who has recently retired back to his native Poland where he is seeking to up-scale home haemodialysis programs, wrote to me in early August and asked me a simple question …
“John, why is home dialysis so successful in Australia and New Zealand?”
What follows is the (edited) answer I emailed back to him the following morning.
He has graciously agreed for me to send it on to you, Dori…
Dear Zbylut …
As you know, home haemodialysis has always been maintained at a logarithmic rate higher than home haemodialysis (HHD) in the US and elsewhere. While the US HHD rate has languished as low as 0.4% of all dialysis (2000-2010) and has only just pushed to the north of 1% in the last 2-3 years, the bi-national rate in ANZ has sustained a healthy 12-15% of all HD (with HD at 80% and PD at 20% of the national total). NZ, always nudging ahead of Australia, sustains >18% of all HD in the home. My own unit has sustained a home nocturnal HD rate (4-5 sessions/week x 8 hours/session) at 25-33% of all HD (= lowest and highest over the past 1.5 decades) while a further ~15% of all our dialysis patients are at home on APD.
There are lots of reasons why home HD has been so lastingly successful here in Australia and New Zealand (ANZ) ... many/most of which are historical.
I have outlined many of these in my chapter on ANZ in the huge composite work on the history of the first 50 years of dialysis that Todd Ing put together ... Dialysis: History, Development, and Promise.
But, in brief...
The first ANZ patient to be properly regarded here in ANZ as a chronic maintenance dialysis patient was an Australian business man, Peter Morris, though not the famous Australian/UK transplant pioneer of the same name. Peter was a man blessed with (1) deep pockets and (2) extensive industry influence who fell ill on a business trip to the US, fortuitously - as it turns out - in Seattle in the early 1960’s.
He stayed on in Seattle until he had completed training for home HD under Belding Scribner's then fledgling home dialysis training team - indeed, he was one of Scrib's first trainees.
Once trained, he then returned to Australia with his Drake Willock machine, and dialysed - highly successfully - and at home. As an incidental aside, Peter self-dialysed, at night, on nocturnal dialysis, as many of the original home patients did in the US, too, and did so for a number of years.
A young, energetic nephrologist, John Dawborn, was assigned to be 'his doctor'. They learned about home care together – both patient and doctor - and John was captivated by the success.
Between them, they stumped the country in praise of this 'new' therapy. Between them, they (a) raised +++ awareness re the possibilities for maintenance HD at home, and (b) raised +++ capital ($$) to fund others to reap similar benefits from home care. And … to be truthful, both deserve a greater place in the national pantheon than has been accorded them ... but that's another story.
John Dawborn set up a home training unit in Melbourne ... a program that was soon to be swamped with referrals from all over! Other programs were then established and grew rapidly in other state capitals. By 1972 ... a fateful year for global dialysis … cheaper and more successful home care soon became the predominant modality in ANZ, and elsewhere – including in the US. In Australia, it soon became apparent that the cost of in-centre dialysis in hospitals was exerting budget pressure on hospital funding, fueling a reticence to grow and expand hospital-based dialysis. This encouraged a bias towards the cheaper options of home care – a bias that continues to this day. In addition, and of key importance, home patients were also seen to do better - notwithstanding that they tended to be a healthier population: a factor that has been a source of debate for several decades.
In the early days, it was all about training the patient, and not a carer. As all ANZ home patients self-dialyse, carers have never been encouraged, required, or trained. This ethos that the patient, and not others, were responsible for his/her own care has dominated ANZ home dialysis ever since. To this day, carers are not trained in ANZ, except in exceptional circumstances.
1972 was to be a turning point, for many reasons.
1972 was the year when the US Congress enacted an 11th hour amendment to its Social Security legislation after a patient gave a demonstration of self-dialysis on the floor of Congress - an amendment that perversely created the exact opposite of the intent of the Congress demonstration and, to the dismay of Scribner and others, led to a strong US funding bias toward centre-based care.
1972 was also the year when here, in Australia, a winds-of-change election installed in a landslide a charismatic Labor politician, Gough Whitlam, as our Prime Minister. In hindsight, a US analogy for Gough might be as a consummate Democrat to the left of Bernie Sanders!
Healthcare reform was Gough’s premier platform. Indeed, he is regarded as the architect and father of our now much beloved, hugely inclusive, and fully free national-healthcare-for-all Medicare system. Medicare, by legislation, has ever since covered all medical hospital, pharmaceutical and other healthcare costs, regardless of illness, chronicity, or medication ... and it remains a national icon that is still jealously and fiercely guarded to this day.
Gough Whitlam - bless him - decided that, on his first day in office, he would find an example to 'underscore' his sincerity about Medicare. He decided to pick something (then rare, but expensive) to use as a symbol of his intent. He picked maintenance dialysis. Indeed, one of the first signatures he put to legislation on his frenetic first day in office in November 1972 was to sign it into law that Medicare would pay for any and all costs of maintenance dialysis - in perpetuity - wherever, whenever or however dialysis was provided, whether at home or in-centre. The symbolic gesture was that if Medicare could/would pay for dialysis, it could/would pay for anything/everything. That he used maintenance dialysis as the flagship example of a costly therapy that would still be wholly covered was a fortuitous ‘accident’ (?), as the future funding demands of dialysis could not have been anticipated fully at that time. But … his promise still holds.
For dialysis professionals and patients, it was a hallowed day. Although many changes in dialysis delivery have since come to challenge us - maintenance PD at home (1977/78), satellite care (the first half of the 80’s), and a far wider and more numerous dialysis demographic than could ever have been imagined back then in 1972 … his promise still holds.
And, importantly, it meant that dialysis was, is, and can still be provided in a fully not-for-profit environment … and the benefits that flow from that not-for-profit ethos have been huge. Dialysis professionals - and companies - cannot charge for or 'earn' from dialysis as all dialysis costs are Medicare-covered and regulated through a strict 'reimbursement-for-costs-only' mechanism. NB: in stark contrast to the US, dialysis companies in ANZ do not provide dialysis … healthcare institutions (read hospital-based renal units) do.
What it also meant was that dialysis could be - and still is - freely prescribed, unencumbered, by any need to produce a profit. All/any dialysis can be allocated/provided on the simple basis of best choice: i.e. the modality best-suited to each particular dialysis patient can be chosen, free from the taint of dollars – whether dollar cost or dollar earnings.
Meanwhile, 1972 proved to be the starting point from which the US began to tumble down the free-fall slope of for-profit care. As US home hemodialysis was systematically devalued and downgraded over the following 2 decades by sequential funding decisions by CMS and other agencies, the collective professional memory of, training in, and expertise with home care faded to a shadow. Unfortunately, successive intakes of US nephrology trainees only learned about centre-based care. Now, whenever the word ‘home’ is linked with ‘hemodialysis’, many US nephrologists seem only to make the connection through home, as in ‘nursing home’ – and not home, as in ‘the home where a human relates, loves, and lives’.
Adding this US-specific loss of a collective nephrological ‘home memory’ to the perverse for-profit incentives that US policies have sequentially in-built into centre-based care … and the recipe for the current widespread ignorance of home dialysis throughout US was inevitable.
On a personal note, 1972 has one further deep meaning for me, for it was the year I began my training as a nephrologist, having graduated in medicine 2 years earlier.
Clearly, as older and sicker patients have been offered dialysis over the ensuing decades, the ANZ demographic mix has inevitably changed. Older, more co-morbid patients have clearly often needed cared-for, and not self-cared care. In addition, the ratio of patients in the main four modalities ... PD at home, HD at home, HD in a low-acuity satellite, and HD in a high acuity in-centre ... has morphed each with and between each other. But, the collective memory of, appreciation for, technical skills in, and clinical selection to home HD has never been downgraded or lost. All ANZ dialysis services still retain, guard, nurture, resource, and believe in the benefits of home training - be it PD or HD - and still preference home, where they can.
While Gough Whitlam may have later had other ghosts appear in his cupboard, his Medicare platform remains as the standout triumph of his time and is a light that shines strongly to this day ... to the relief of all Australians. While political attacks have intermittently been launched, from time to time, to pare Medicare back, each and every attack on the integrity of Medicare has been fiercely fought by the people, have been overwhelmingly rejected at the ballot box, and havealways been to the electoral death of the attacker.
Finally, as the cost of centre-based dialysis to Medicare has inexorably risen - particularly driven by staffing salaries and infrastructure – the cost of home HD has not … or, at least, home costs have risen at a far slower rate. This has led to a current funding differential in the range of Au$30,000/patient/year in favor of home HD. All governments – whether of federal or state persuasion, and from both sides of the political divide – have been quick to appreciate home care as an ever more cost-effective option. Indeed, several similar costing studies in North America have shown the same differential: the cost of home hemodialysis being between 15 and 30% less – despite that the average number of treatments/week are significantly higher in the home population c/w conventional thrice weekly centre-based care.
In the last decade, this has led all Australian state governments to approve and value-add small incentives to benefit and encourage home care, while studiously avoiding providing similar incentives for centre-based care. As examples, physicians now receive a small monthly fee, over and above their salary, for each patient they place at home, while no fee or financial reward is (or ever has been) paid for any centre-based management. The centre-based costs of physician care are limited and controlled by government-determined salaries that are pegged either to full-time salaries or to ‘sessional hours worked’, and are not dependent on or influenced by the number of patients seen. Further, patients who go home receive an annual reimbursement for power, water, and waste disposal costs that, in some cases, actually exceed the true costs.
Unlike the US, where (oddly and erroneously) home HD seems to be equated in the minds of many with the NxStage system, ANZ home HD has not embraced this machine or process. Here, home dialysis is performed using conventional single pass dialysis machines – most commonly either the Fresenius 4008S or the Gambro AK95, or similar – as we believe that despite each machine requiring the installation of a mini-RO in the home, these systems still offer superior dialysis. This, of course, is a matter of choice and preference.
ANZ patients who dialyse at home most commonly do so by self-dialysis. Many perform their treatments alone and un-partnered, at night, and a carer is not required. Home overnight dialysis allows access to both the higher frequency of treatment that is possible at home, while it also allows longer, slower, gentler and more complete deep compartmental solute clearance … see the seminal work of Sunny Eloot and Ray Vanholder from Belgium – work you will no doubt be well familiar with. Most importantly – and a long-standing hobbyhorse of mine – home HD offers superlative equilibrated volume control throughout a 7-8 hour treatment.
As a result, daytime hours are freed up, and a return to gainful employment made possible. Several years ago now, a study from Hong Kong – whose privacy laws did not prevent access to tax returns – showed a stark comparison between the drain on the national budget from welfare-supported centre-based hemodialysis relative to the employment-derived tax contributions that accrued from patients on home hemodialysis. This strong economic argument for home-based hemodialysis is additive to the well-accepted clinical benefits of better biochemical and cardiovascular health, improved well-being and self-image, lower hospitalization rates, and a highly significant survival advantage for those at home.
These and other factors - too numerous to deal with here - have helped home programs to remain strong, even in the face of an ageing and more complex dialysis demographic that one might think would erode home care. This has allowed home dialysis to sustain its place in the ANZ landscape.
In all this, I have used ANZ as a unity, while indeed Australia and New Zealand are separate, sovereign nations. Yet so closely are they linked in geography, thought, purpose, and common weal, that in this and most other aspects of their progress through time, ‘A’ and ‘NZ’ have always acted in semi-synchrony … and long may it be so.
So, Zyblut, the background for why Australia and New Zealand - though NZ does even better than Australia - ‘do’ more home care, and do it better, than all other nations has been driven, not only by clinical outcomes - though these are also undeniable - but by the political and funding environment we have enjoyed here in our happy corner of the world.