In 2009 in Boston, Dr. Tom Parker and Dr. Ted Steinman were co-chairs of the "ESRD: State of the Art and Charting the Challenges for the Future" conference (summarized here).
The Boston conference, as it became known, reported that
- >20% of individuals treated for end-stage renal disease die each year
- >70% die after five years
- Mortality can be as high as 40% in the first year of dialysis
- Total costs for treating ESRD patients are approaching $34 billion a year; annual costs per patient are $60,000 to $80,000. Arteriovenous (AV) access choice has the greatest impact on the range.
- $20,000 per patient per year (PPPY) is spent on hospitalization, mostly due to cardiovascular disease and infection
- <20% of patients get rehabilitated; returning to jobs, volunteer work, etc.
Parker and Steinman write: “We believe that the season is right for change. Momentum has begun. The patients, nephrologists, nurses, caretakers, dialysis providers are increasingly acknowledging that we will no longer accept mediocre outcomes. Together, at the grassroots, we impatiently are demanding better care.”
Tom Parker and Ted Steinman implored Medicare to lead a change in dialysis care. One of the suggestions that the steering committee for the Boston meeting made was: “Spend less time on traditional clinical outcomes measurements that may only account for a small percentage of the morbidity and mortality differences.” Medicare doesn’t seem to have listened given the evidence from the proposed 2014 QIP. Another was “Assess the dialysis prescription beyond the current Kt/V formula, with emphasis of more dialysis treatment time per week.” Not much change there.
In a recent article in the Prospect magazine John Campbell a biographer of Margaret Thatcher talks about Mrs. Thatcher’s leadership. He writes: “What she did have … was an essential clarity of purpose. She did not know exactly how, or whether she was going to get there, but she knew the direction she wanted to advance.”

In the evolution of dialysis from a small “cottage industry” in the Merrill and Scribner era of the 1960s and 1970s to the mega business it has become in the current era, we have lost the clarity of purpose that Campbell talks of and that Merrill and Scribner exemplified. These two individuals were the fathers of dialysis. Today it seems that dialysis patients in the US, and others elsewhere, are subject to the whims of corporatism and the casino capitalism of the large dialysis organizations (LDOs).
I have no idea whether the comments to my recent articles on dialysis reflect the view of a very small sliver of the dialysis population, or whether they are shared more broadly. Still, what comes across loudly is that there is tremendous dissatisfaction with the current state of dialysis care. That we have lost our way.
Given the very limited progress from the Boston conference nearly 3 years ago, the point is that there is no point in asking: "are we there yet?", when we don't have the clarity of purpose to know where we are heading. Of course the answer is "No".

Taxpayer expenditures for dialysis: 34 billion.
ReplyDeleteNIH total funding for ALL diabetes and kidney-related research activities - just under 2 billion.
Estimated costs to bring implantable dialysis to clinical trials: 20 million (UCSF project).
Tom Parker spends years preaching to the masses, yet nothing changes.
Are we there yet? How about are we even headed in the right direction?
When you reference the "dialysis population", am I right in assuming you mean the patient population? If so, then as a patient, I can tell you that yes, most patients understand that more time receiving dialysis is better. But in the US, more dialysis means doing it at home, and that's where a lot of patients fall. Many just cannot dialyze at home, so they are doomed to receive their minimal dialysis in clinic.
ReplyDeleteLet me ask a simple question. We all know that outcomes in the US are worse than in any other western nation. What are those nations doing that we are not?
I don't think we have "lost our way" at all. I think all concerned know exactly which way to go, but certain groups just don't want to go there. The map is right in front of us and has been for decades. It's just that certain interests have obscured the reading lights.
I hear time and again that the Large Dialysis Organizations are to blame for the mess we are in. I agree that it LDOs do have a large part in this, but really it is THE NEPHROLOGISTS.
ReplyDeleteWhere do the patients that get dialyzed in the LDOs clinic come from? They don't drop from the sky. It is the nephrologist that sends these patients to the clinics. I have seen over and over again that patients who should never be dialyzed in the first place are on dialysis.
I have mentioned this previously in my posts, that the biggest confict of interest that I see is joint ownership of Clinics between dialysis companies and the nephrolgists. As I have stated before an empty chair generates no income, so it is an incentive for the nephrologists to have as many patients as possible for as short a time as possible on dialysis. Dialysis is only done to achieve the minimum acceptable clearance as measured by Kt/V , which is the single most important factor that has led to the present violent methodolgy of practice of dialysis in the united states.
SO how can this be changed. Of all the stake holders in dialysis, the one and most important person that needs to change their attitude is the NEPHROLOGIST. NEPHROLOGIST need to stop thinking of dialysis as a BUSINESS. Remember the nephrologist is 100% responsible for the prescription of dialysis. As long as there is joint ownereship of dialysis clinics there will be no incentive to change the current methodology of dialysis. I have been told that the success of a nephrologist is measured by the number of dialysis pts he/she has, which I find just disgusting.
I am just surprised that no one comments on the practice of joint ownership of dialysis clinics.
While I am greatly encouraged by the voices of the patients here on this blog and elsewhere, the great majority of patients just donot question what their nephrologists DO or DONOT do and just follow whatever is told to them. I have spoken to a great majority of patients and they are not even aware of their choices when they reach ESRD, including the choice of NOT TO DIALYZE.
So who needs to take the charge in changing the direction in which we are headed ----- it is the NEPHROLOGIST.
Academic medical centers, national organizations such as the ASN, NKF and the RPA need to wake up to the crisis that we are in and lead the charge --- you need to have the courage to reject urea kinetics and KT/V as the measure of dialysis adequacy. You need to educate young fellows of when to start a patient on dialysis and also when NOT To start on Dialysis. You need to educate them to look at their quality of life and just not look at their numbers. You need to educate them that the ultimate goal of any treatment including dialysis is to make the patient better, to offer them a better quality of life.
It would be worthwhile to remember again what is told when graduating from medical school -- PRIMUM NON NOCERE --- FIRST DO NO HARM
Anonymous, would you describe for me your definition of ideal or optimum dialysis? I can't comment on the practice of prescribing dialysis to patients who don't really need it, so setting those aside, for those patients who DO need dialysis, how do you think a better quality of life would be achieved? Are you primarily looking at longer and slower treatments in a clinic setting?
ReplyDeleteAnd PS...if nephrologists could stop thinking of dialysis as a business, what do you see as being the result? What benefits might patients expect from this change of mindset?
ReplyDeleteAAKP still publishes an editorial by By Eli Friedman, trying to make the case that the difference in outcomes between the US and abroad is merely selection bias. One of the most outlandish claims is that the superior Japanese survival rate (the best in the world) can be entirely explained away due to much lower transplant rates in Japan, thus biasing the Japanese sample with healthier subjects who would have received transplant in the US.
ReplyDeleteBut how about a dose of mathematical reality: Under 20,000 get transplants per year in the US, out of a population greater than 380,000. Therefore AT MOST, a mere 5% of the difference can be explained by the removal of successful transplant recipients from the US dialysis population. This is a mathematical fact. So how do you explain the other 95% of the disparity?
And this is from AAKP! - an organization which is supposed to represent PATIENTS. If they can be fooled by these straw-man arguments of selection bias (which NEVER hold up under scrutiny, and persist even after matching for age and other co-morbibities), then anyone can be fooled, or at least the average, scientifically and mathematically challenged American patient.
If the informed number of dialysis patients who know that they can and should expect better are indeed a "small sliver" - perhaps it is because the very organizations which should be protecting their interests have dropped the ball.
We don't have a scientific problem. It is a moral one.
The Wizard of Scribb
ReplyDeleteLong ago in the faraway Kingdom of Yusa, The Wizard of Scribb invented a Magic Potion for an incurable Plague besetting the Kingdom. Not a Cure, this enefficient and weak Early-Potion needed to be taken every day to remain effective. The Ingredients were Costly, so only the wealthiest Nobles could afford Scrib's Potion.
One day, a very clever Apothecary devised a solution. "Let us Apothecaries administer the Potions to the People rather than always requiring Wizards. We promise to always do this under the direcct Guidance of Qualified Wizards.” The Good King of Yusa thus agreed to allow a portion of the King's Gold forever be devoted to supporting a new Potions for the People Programme.
Wizards still prided themselves on their superior skill with Potions and competition was initially very fierce. Then one day a VERY clever Apothecary devised a way to convince most Wizards to send the People to his Shoppe instead of their own. (He had briefly considered just paying the Wizards a commission, but worried that the King might consider this sort of arrangement to be some sort of Collusion, and send his Royal Soldiers to put a stop to it.) Instead, the Apothecary devised a system of giving any willing Wizard a “Share” of his Shoppe.
This new strategy was so successful that eventually there were only two Apothecary Shoppes left in the entire Kingdom of Yusa, and most Wizards owned Shares in either one or the other of these two Shoppes. (This was seen as “none of the King's Business” even though it did happen to be the King's Gold paying for all the Shoppes.)
The Minister of Potions, suspecting “padded Bottle Counts”, and anyway unable to keep track of it all, began to base payment on a simpler count of how many Trips were taken by the People, trusting the Law of Averages to efficiently accomodate both Prosperity and Quality. Due to the limited supply of Gold, each Person was just allowed Three Trips per week. Some People wished to take their Potion home with them, but the Qualified Supervison of the Apothecary was necessary at all times, (but fortunately the even more expensive Wizard was no longer required to be present). Never mind what clearly more Backward neighboring kingdoms were doing.
With time the Apothecaries of Yusa became more skilled at counting Trips and less skilled at mixing Potions. However, continued progress was steadily made in Concentrating the Potions into modern smaller “Quick-Swallow (TM)” Bottles. Defying logic, the death rates continued unchanged despite the development of Quick-Swallow (TM) Technology.
Everyone forgot somehow to the Wizard of Scrib had once been about Potions taken frequently, rather than Trips and Swallows. They also somebow forgot, (and even vehemently denied!), that it has anything to do with the King's Gold.
The Wizards, who had once had such pride in their Skills with Administering Potions, threw up their hands, declaring "What am I to do? It is the King's Rule that he will only pay for Three Trips. Anyway, Administering Potions is now the Apothecary Guild's responsibility. I'm far too busy to actually talk to the King or his Minister of Potions about all of this.”
The Apothecaries Blamed the King and his Ministers. The Wizards Blamed the Apothecaries. Most Apothecaries (and even a few Wizards), just Blamed the People for Noncompliance in taking Convenient and Concentrated Quick-Swallow (TM) --merely because it was actually made them feel more ill, without seeming to be any more effective than the original Wizard of Scribb Formula. This continued for years and years and years.
The Wizards and Apothecaries Prospered, and the People continued Swallowing.
The End.
(Editor's note: Thank goodness that this is all just a fairy tale designed to frighten small children. Nothing so outlandish and illogical could ever happen the real world.)
No Happily Ever After?
ReplyDeleteBut one day one of the people of Yusa realised that everything was not right in his/her fairytale land.
ReplyDeleteOf course the threat of the plague was still very much real and a danger not only to the people of the country but also to the wizards, the king and the Apotecharies.
And this clever individual thought to himself/herself. If this is something that affects us all would it not be better that we all share in the burden of administering the taking of the medicine. This way we could make sure not only that everyone gets treated but since we commonly share the burden the total cost for the program will decrease.
Surely our benevolent king would love to hear about such a program since it will save him gold as well as give him the love of the people.
So the clever individual put together a power point presentation and went before the king in all his pomp and glory to present his amazing proposal.
The King listened patiently to the proposal "uming and aaahing" at the appropriate times.As the presentation came to an end the King rose and decreed:
"Off with his/her head!!!"
But why???? Do you ask yourself......
Well, what the clever individual failed to see was that in the Kingdom of Yusa even the King owns stock in the medicine business.
The Apothecaries lived happily ever after, and the Wizards pretended to live happily ever after (but they were quite convincing.)
ReplyDeleteThe End.
@ Dr. Singh:
ReplyDeleteBack to the outcomes of the 2009 Boston Conference:
"In collaboration with CMS, plans are underway to hold a "summit" conference to determine how best to approach the recommended above changes. The intent is to hold such a meeting in the second quarter of 2010."
So, Dr. Singh, did this alleged "summit" ever occur? (Clearly it is not adequately reflected in the current QIP.)
Maybe it is past time for you and Parker and others to convene another "Boston" type meeting. Hold CMS accountable. Make them face up to this. Get the discussion with CMS into the public record.
Waiting 20 years between meetings and hoping CMS will provide leadership doesn't work.