NBC Report on Dialysis Reveals Continued Media and Nephrology Bias

[Hemodoc]

@MooseMom - January 2, 2011 - 01:45:15 AM

MM - I'm sorry that your mother did not receive the medical care and attention she deserved.  Older patients with illnesses are so vulnerable to this type of treatment by medical staff.  I know it was too late after she passed away, but did you ever file a grievance with the ESRD Network that her clinic denied nocturnal treatment without ever giving an answer as to why she wasn't considered a candidate?  If the clinic is confronted, maybe it will prevent this from happening to others.  I realize a small consolation to losing your mother, but it could make a difference.

Yes, there is a perception that nephrologists are no longer advocates for their patients.  I have been fortunate with my nephrology care since starting on dialysis in 1978.  I did leave the first one after a year because I did not think he was looking out for my best interests.  However, I did receive excellent training at his clinic and he and the staff did instill in me how important it was to learn all I could about treatment and not allow my life to revolve around my illness. 

I'm curious, though.  I get the impression your current nephrologist hasn't been meeting your needs unless pushed, and then grudgingly.  Why do you stay with him/her?

Dear Noahvale, it is not indeed a perception but proven facts that the American nephrologist has practiced dialysis standards of care based on industry influences of business practices since the mid 1970's.  Unfortunately, any perceptions that they have as poor advocates in my opinion was earned by the American nephrologist all by their own self.

http://www.hemodoc.com/2010/12/a-tale-of-two-cities-the-story-of-dialysis-in-america.html

http://www.hemodoc.com/2010/12/ncds-revisited-three-decades-later.html

[Hemodoc]

America has failed the dialysis community since the mid 1970's.  The AAKP, the NKF are dominated by industry leaders and have turned into transplant advocates which only represents a small fraction of the total ESRD population.  I don't believe that we need any single group speak for us, but instead those that wish to speak up can come together through the internet on such sites especially as IHD, RSN, HDC, WeKAN and NxStageUsers.  We truly already have all of the infrastructure needed to go forward if people simply will become true advocates speaking out on these issues.

[plugger]

Told NBC Nightly News I would like to see a show showing dialysis the way it is for most vs. the way it should be.

http://www.msnbc.msn.com/id/10285339/

[karen547]

personally for me the experience wasnt as terrible as i thought it would be but it definitely wasnt fun but ppl make it seem like its torture sometimes which is ridiculous imo if you go in with a positive attitude it makes it easier

[MooseMom]

Oh wow...there's so much to read here, and I don't have the time to digest it all because I have promised myself that all I'm going to do today is sit on my behind and watch football all day.  But the question that noahvale asked was a good one...why do I stay with my neph?  Well, I'm on an HMO through my husband's employer, and the PCP that I was more or less assigned to is very good, and this neph is in the same practice.  My neph has given me excellent pre-dialysis care, although it took some research on my part to see how well he has managed my illness.  Through the transplant evaluation process, I've come across many health care providers who know and respect my neph.  I've been told on more than one occasion that I am lucky to have him.  I feel he could do better in the patient education department.  But to be fair, together we have kept me off dialysis for over 6 years since the first day I saw him. 

Part of the problem is me.  I feel certain that if I had specific questions about dialysis, he'd give me good answers (well, I'd like to think so).  But as soon as it becomes clear by my lab results that I don't have to start D just yet, I just want to flee his office asap and wallow in my reprieve.  Perhaps he senses that and decides that this is not yet the time to discuss modalities.  I have mentioned the possibility of doing NxStage, and he said that it gives good clinical results but that I need to be aware that it requires a strong domestic situation and a good dose of fortitude.  I appreciate his candor.

As for contacting the ESRD network on behalf of my mother, that's an excellent idea.  I'm embarrassed to admit that I didn't even know about the networks until a couple of months ago after reading a thread by meinuk about them.  I guess since I am not actually on D yet, I didn't get the info about the networks, but I know my mother never mentioned them.  But then again, I don't think my mom was a good self-advocate at all.  She was one of those patients who understandably wanted to get off the damn machine asap and didn't want to devote more time thinking about her kidneys.  I should have advocated more for her, but at the time, I really didn't know much about other modalities.  I do feel like I failed her.

I'll do more reading on this thread later; I'm really grateful for all the information that is packed in these posts.  But right now, I'm ready for some football!

[Rerun]

personally for me the experience wasnt as terrible as i thought it would be but it definitely wasnt fun but ppl make it seem like its torture sometimes which is ridiculous imo if you go in with a positive attitude it makes it easier

Next time I have the screaming cramping I'll try to be positive.   

I know on my Nocturnal shift there is only 1 nurse and 1 tech for 10 patients.  So, we all have to be in good health to be on Nocturnal.  We can't have people who are usually a "problem" (heart issues, can't walk on their own, needy) on that shift because there is not the staff to take care of them.  AND it is not a huge money maker for the clinic because it is 8 hours and in reality they could break that down to 2 shifts and make twice the money so they are not going to hire more staff to pull from what little profit that shift has.

[cariad]

I can see where Peter wants to go.  Put dialysis and transplant on an even playing field but I still think Transplant is just above and beyond where my life sets.  I've had both.

I agree that, having experienced both, dialysis cannot hold a candle to transplant in my particular case.

I wish dialysis and transplant did not have to be at odds with each other and there was not an attitude of 'we need more funding for dialysis so let's focus on the negatives of transplant' or the reverse. Many, if not most, ESRD patients choose transplant if they are able it would seem, but those who choose dialysis or who are not eligible for transplant deserve to have their lives improved as well. I thought Noahvale was just advocating for more people to have individualized treatment with the help of their nephrologist, which seems reasonable to me.

'Obamacare' is going to open up health care to more people, and I don't see how anyone could object to that. Funds are already limited, and always will be. I don't want to live in a country that stands back and lets children die because, for example, their parents don't make enough money. (I know, I already live in such a country - I'm working on that....)

Also, giving equal consideration to dialysis and transplant, or more attention to dialysis in keeping with the greater number of people on it, makes sense to me, but I think kids are a unique case. I feel that children should be got off dialysis as quickly as possible to avoid dire consequences to their development, but perhaps they can avoid many of those today with medical advancements.

I don't know if the public would listen to a more nuanced discussion on ESRD options. They do so love the drama and romance of transplant.

I know this is disjointed but I had a whole well-thought out reply written and then the computer ate it. Boo.

[Hemodoc]

I would have to say, only in America is the chocie of optimal dialysis seen as a competing option with transplant.  In all of the other developed nations it is seen as a complementary aspect of care.  I wrote about this on Bill's blog back in 2008. 

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/06/competing-or-co.html?cid=121733698

I am not in the least trying to supplant transplant with optimal dialysis.  I am very much trying to supplant our substandard in-center paradigm with optimal dialysis. I am taken back by the trasnplant community that has not likewise adopted optimal dialysis strategies as the best manner in which to survive the wait list for those that do not have living donors available. 

In short, I have always advocated the best treatments for all of my internal medicine patients that will give them the best expected outcomes.  In the realm of dialysis, more frequent and longer duration dialysis should be the gold standard. Instead, we have the most expensive and least effective option as our default standard of care.  I can think of no other disease state that offers the worst and most expensive treatment as the front line therapy.  Furthermore, we have become the widgets in the dialysis widget industry and through our pain and suffering we make the stockholders of dialysis companies quite wealthy.  The entire system is fraudulant in my opinion and needs to begin focussing on best practices and best outcomes.  In so doing, we shall reduce not only pain and suffering but the expense of treating the many complications associated with dialysis undertreatment.

God bless,

Peter

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/06/competing-or-co.html?cid=121733698

[MooseMom]

Just quickly as I have more football to watch, I heartily agree that there should NOT be some contest or fraction between the transplant advocates and the optimal dialysis advocates; we are all in this together.  Many patients who are transplanted eventually lose their kidney and find themselves back on dialysis, so they really do have a vested interest in having access to optimal dialysis.  On the flip side, anyone who wants a transplant but finds themselves stuck for years on a waiting list has a vested interest in optimal dialysis, too, because you need to stay healthy in order to stay on the list.  So this fracture is largely manufactured.

It just seems to me that the current practice of dialysis in the US causes a whole plethora of medical problems on top of the problem it is trying to solve.  Why subject a whole population to a treatment that results in more harm and, therefore, greater expense?  That makes no sense to me at all.  So I agree with Hemodoc in that even if you do not ascribe to the moral imperative to give people the best treatment possible, you should at least be very concerned about the expense that results with high infection rates and other problems associated with standard dialysis.  This will be the center of my argument when I write to my (Republican) US Representative, that dialysis as practiced in this country is both immoral AND financially irresponsible.  If he truly is Christian and a fiscal conservative like he claims to be, I'll give him the opportunity to prove it.

[cariad]

Other nations have correctly embraced optimal dialysis and transplant as complementary not competing facets of renal replacement therapy.  Just as dialysis is almost always portrayed in negative terms, transplant is almost always portrayed in positive terms without taking into account the long, long list of assciated complications from deadly skin cancers, solid organ tumors, PTLD, viruses such as BK, JC, SV40, EBV, CMV, Hep C, Hep E, Herpes, VZV,RSV, fungal infections such as Candida, Aspergillosis, Cryptococcus, Coccidioidomycosis, Histoplasmosis, opportunstic infections such as MRSA, VRE, VISA, C. Diff, increased risk of dialbetes and cardiovascular disease, severe anemia, and not the least to mention side effects directly from the medications and acute and chronic rejection.

The majority of patients with successful transplants end up back on dialysis again once the graft fails, usually within 10 years, some last much longer.  The entire interaction between demonizing dialysis and elevating transplant is very much an American take on the renal replacement options which further places us in the control of the dialysis industry to make our standards of care.  in other words, propaganda on both sides of the issue is what predominates the American system. It is time to speak the plain truth about dialysis and how well it can be done and the sobering list of complications that can occur with a transplant instead of continuing the polarity of discussions we now have in America.

Peter, I hear you say you want transplant and dialysis to be portrayed as complementary, and I certainly believe you, but then what is to be gained by listing all of these possible (though not necessarily probable) complications? Why worry about speaking "the plain truth" about "the sobering list of complications that can occur with a transplant"?

The stats I've seen/heard for transplant do not match yours, though I suppose it's close. Barring rejection in the first year, the half-life for renal transplant is now at 25 years in the case of live donors, around 12 for cadaver. This is of course speaking of graft survival, not patient survival. Around half of the transplants performed in this country are live donor, so perhaps we could encourage live donation as the best option, cadaver donation and dialysis as excellent, alternative therapies when done properly. When I had my first transplant, I have been told that survival rates for patients were 5-8 years. There are improvements in transplant, such as the clinical trials that another member and I have undergone, that hold promise for essentially curing ESRD via transplant. An implantable, artificial kidney seems to be many years behind, but if that option proves as successful as human donors, hurrah! No more lists, no more immunosuppressants, no more risks of either transplant or dialysis, no more loved ones being called upon to risk their lives for those of us in renal failure.

As either a bridge to transplant or treatment of choice, I agree with you completely that the best - and by luck, the least expensive - option should be the one pushed by nephrologists. Perhaps nephrologists should not be allowed to also own dialysis clinics? I know that this has been pointed out many times as a true conflict of interest (and perhaps in this discussion, I am having difficulty keeping everyone's points straight, though am enjoying this greatly). 

Ah, MM, just read your reply as I went to post. Good luck with that Republican! Dialysis is Big Business, so you will be testing his loyalties I suspect. My rep is about as liberal dem as you can get so I'd be preaching to the converted with her, but our newly-elected senator is off-the-charts Republican. We have a high esrd population in Wisconsin, because it is a state that established an excellent renal program early on, and many people still move here for that.

[Hemodoc]

Other nations have correctly embraced optimal dialysis and transplant as complementary not competing facets of renal replacement therapy.  Just as dialysis is almost always portrayed in negative terms, transplant is almost always portrayed in positive terms without taking into account the long, long list of assciated complications from deadly skin cancers, solid organ tumors, PTLD, viruses such as BK, JC, SV40, EBV, CMV, Hep C, Hep E, Herpes, VZV,RSV, fungal infections such as Candida, Aspergillosis, Cryptococcus, Coccidioidomycosis, Histoplasmosis, opportunstic infections such as MRSA, VRE, VISA, C. Diff, increased risk of dialbetes and cardiovascular disease, severe anemia, and not the least to mention side effects directly from the medications and acute and chronic rejection.

The majority of patients with successful transplants end up back on dialysis again once the graft fails, usually within 10 years, some last much longer.  The entire interaction between demonizing dialysis and elevating transplant is very much an American take on the renal replacement options which further places us in the control of the dialysis industry to make our standards of care.  in other words, propaganda on both sides of the issue is what predominates the American system. It is time to speak the plain truth about dialysis and how well it can be done and the sobering list of complications that can occur with a transplant instead of continuing the polarity of discussions we now have in America.

Peter, I hear you say you want transplant and dialysis to be portrayed as complementary, and I certainly believe you, but then what is to be gained by listing all of these possible (though not necessarily probable) complications? Why worry about speaking "the plain truth" about "the sobering list of complications that can occur with a transplant"?

The stats I've seen/heard for transplant do not match yours, though I suppose it's close. Barring rejection in the first year, the half-life for renal transplant is now at 25 years in the case of live donors, around 12 for cadaver. This is of course speaking of graft survival, not patient survival. Around half of the transplants performed in this country are live donor, so perhaps we could encourage live donation as the best option, cadaver donation and dialysis as excellent, alternative therapies when done properly. When I had my first transplant, I have been told that survival rates for patients were 5-8 years. There are improvements in transplant, such as the clinical trials that another member and I have undergone, that hold promise for essentially curing ESRD via transplant. An implantable, artificial kidney seems to be many years behind, but if that option proves as successful as human donors, hurrah! No more lists, no more immunosuppressants, no more risks of either transplant or dialysis, no more loved ones being called upon to risk their lives for those of us in renal failure.

As either a bridge to transplant or treatment of choice, I agree with you completely that the best - and by luck, the least expensive - option should be the one pushed by nephrologists. Perhaps nephrologists should not be allowed to also own dialysis clinics? I know that this has been pointed out many times as a true conflict of interest (and perhaps in this discussion, I am having difficulty keeping everyone's points straight, though am enjoying this greatly). 

Ah, MM, just read your reply as I went to post. Good luck with that Republican! Dialysis is Big Business, so you will be testing his loyalties I suspect. My rep is about as liberal dem as you can get so I'd be preaching to the converted with her, but our newly-elected senator is off-the-charts Republican. We have a high esrd population in Wisconsin, because it is a state that established an excellent renal program early on, and many people still move here for that.

Dear Cariad,

This is a link from OPTN showing their data on graft survival based on age out to 5 years. 

http://optn.transplant.hrsa.gov/latestData/rptStrat.asp

I suspect you are looking at maximum expected survival of living vs cadaveric transplants not actual.  I would simply stand behind my very broad statement that MOST transplants last about 10 years for the majority of patients on average, thus being more than 50% of patients will be back on dialysis within that time period. Living donors fair better.  No one is arguing this whatsoever.

What we are doing is exactly the opposite of placing transplant and optimal dialysis in opposition, something you apparantly feel I am doing despite many posts here and DSEN stating otherwise.  We are promoting the best survival strategy for ALL patients, not just the lucky few that get optimal home dialysis and the lucky few that get a renal transplant.  For those that have access to those modalities, great and I am happy you have that opportunity, but what about all of the others left behind.

Now, why did I list a PARTIAL list of the common complications of renal transplant, because the negative aspects of renal transplant are equally hidden as are the positive aspects of optimal dialysis.  People need true informed consent for all aspects of renal replacement therapy and I would venture that many patients who have encountered the complications of renal transplant were completely unaware of that risk before they had the transplant. 

I remember one patient who loved horses in the high deserts of CA and was always out in the sun and planned to continue to do so once she had her living related transplant.  She had already been approved and through the entire informed consent procedure, she was simply waiting for a surgery date within the next couple of months.  I noted her sun damaged skin and multiple actinic keratosis which is a precursor to squamous cell skin cancer, a deadly cancer quite common in renal transplant patients, and she was completely unaware of any of those associations and how it would effect her outdoors, in the sun horsemanship after transplant.  It is not only optimal dialysis informed consent that we are lacking in America, but truth of all associated renal transplant complications as well.  In other words, the authorities have decided that transplant is better and all we really need to know is that you will die earlier on dialysis in-center, thus rendering the type of informed consent I saw as standard with so many other medical conditions quite simplified with the approach of most when it comes to renal transplant.  My own informed consent for renal transplant did not even touch upon all of the short list I have above. If you were in a center that gave that type of information, you are more fortunate than many.

Lastly, I would hope folks would avoid the labels of Republican and Democrat in this battle that has lasted through both Democratic and Republican dominated Washington administrations and congress for over 40 years.  I am about as conservative a person that you will find just about anywhere, yet Bill and I are in complete accord over these issues. If the Republicans are simply demonized, I will ask a simple question,why did the Democratic Senate majority, the Democratic House majority and the Democratic White House administration not fix dialysis during the last two years?  Folks this goes beyond the polarizing labels folks like to throw around, but the sad truth is none of these politicians to date has fixed the problem.  For those looking at the politics of this issue, the only senator I know looking into this mess right now is the Republican Senator Grassley.

http://www.propublica.org/article/sen-grassley-demands-information-on-dialysis-clinic-conditions

So why not take a look at what is common among those with renal disease that knows no political bounderies on who it affects and get on with the job of finding common solutions instead of bandying further reasons to divide and conquer amongst ourselves.  This is not in the least a Republican or Democratic issue, it is instead one of common humanity and shared pain and suffering amongst all political persuasions.

[cariad]

Peter, in terms of telling patients that transplant has possible complications - ABSOLUTELY this needs to be done. I thought we were talking about speaking to the general public, which would include congress in my mind because for this issue, I view that term as applying to anyone who has no personal experience with ESRD. I still don't see the relevance when lobbying congress or writing to NBC in even getting into the transplant complications.

I read your article on DESN and, unless I missed it (trying to clean house as I am engaging in this discussion) you do not go into transplant complications as even being a factor. I enjoyed reading the article - nicely done and good points, well made.

I wasn't singling you out in my first reply, though you seem to think I was. I have found hostility regarding transplant, especially live donors, on this site on occasion, not from you but from a few others (well, one comes to mind, but he does not come here anymore) and it would seem to me that a few people who choose longterm dialysis at times feel the need to bash transplant. Again, I stress, NOT you. That's where I think we could do more as a site and perhaps an advocacy group. The polarity exists here, though to a much lesser extent than the world at large, and I am sure I notice it more/am more sensitive to it because it often feels like these individuals are talking directly at me. Perhaps we could do more on IHD to push the complementary therapy idea.

Your article mentioned the difficulty in offering and paying for ESRD treatment in developing nations, something I am always interested in hearing more about. My course in life has been a huge money saver for Medicare on top of being the best therapy for me, so I'm afraid I am destined to be a more vocal transplant advocate than dialysis. I like the complementary therapy focus, but it takes a fair amount of explaining and that is what I am not sure the public has the patience for. 

I wouldn't know what to do with myself if I stopped taking the mickey out of Republicans! (joke, joke, joke!) Fair enough - I'll try to remember that Republicans have not necessarily been fighting against everything I believe in, it just feels that way sometimes.

[Hemodoc]

Peter, in terms of telling patients that transplant has possible complications - ABSOLUTELY this needs to be done. I thought we were talking about speaking to the general public, which would include congress in my mind because for this issue, I view that term as applying to anyone who has no personal experience with ESRD. I still don't see the relevance when lobbying congress or writing to NBC in even getting into the transplant complications.

I read your article on DESN and, unless I missed it (trying to clean house as I am engaging in this discussion) you do not go into transplant complications as even being a factor. I enjoyed reading the article - nicely done and good points, well made.

I wasn't singling you out in my first reply, though you seem to think I was. I have found hostility regarding transplant, especially live donors, on this site on occasion, not from you but from a few others (well, one comes to mind, but he does not come here anymore) and it would seem to me that a few people who choose longterm dialysis at times feel the need to bash transplant. Again, I stress, NOT you. That's where I think we could do more as a site and perhaps an advocacy group. The polarity exists here, though to a much lesser extent than the world at large, and I am sure I notice it more/am more sensitive to it because it often feels like these individuals are talking directly at me. Perhaps we could do more on IHD to push the complementary therapy idea.

Your article mentioned the difficulty in offering and paying for ESRD treatment in developing nations, something I am always interested in hearing more about. My course in life has been a huge money saver for Medicare on top of being the best therapy for me, so I'm afraid I am destined to be a more vocal transplant advocate than dialysis. I like the complementary therapy focus, but it takes a fair amount of explaining and that is what I am not sure the public has the patience for. 

I wouldn't know what to do with myself if I stopped taking the mickey out of Republicans! (joke, joke, joke!) Fair enough - I'll try to remember that Republicans have not necessarily been fighting against everything I believe in, it just feels that way sometimes.

Great post Cariad and thank you for the kind comments.  The polarity comes from many sources.   I suspect that we will internally need to overcome this polarity ourselves before we can move forward.  After all, what is more common in breaking up advocacy movements than to divide and conquer whether it is the false dichotomy between transplant OR optimal dialysis as well as Republican and Democrat.  And by the way, I am not in the least trying to take away your fun of bashing the Republicans, bash away, many of them really deserve it as well.

I kind of lump ALL politicians into the same sort of self serving group, call me cynical but so be it.  I am not sure where the so called Tea Party movement will go, but if it makes a few politicians on either side of the aisle a little more honest, then it has already had its best effect.  I am sure you have quite a few Sarah Palin jokes, but IHD may not be the best place for them.  Us gun toting Republicans have our share of Obama jokes as well.

God bless,

Peter

[Bill Peckham]

Noahvale I liked your history but am not sure of your 14 billion/year figure. "The Medicare costs of those who use dialysis run about 20 billion dollars total - 2008 numbers. The per patient medical costs are about $75,000/year. That includes skilled nursing average costs. If you look at the average cost of people who use dialysis but do not use skilled nursing it is about $65,000. Which brings up a point in describing the ESRD Program." -  My cost figures are taken from the 2008 USRDS Annual Data Report - www.usrds.org/2008/view/esrd_11.asp.  This includes dialysis and transplantation costs, vascular services and hospitalizations.

Well the 2010 report is out (2010 reports 2008 numbers) http://www.usrds.org/2010/pdf/v1_09.pdf  and looking at the cost to Medicare for someone using dialysis is about 20 billion. Robin Fields use 20 billion/year; the atlas gives it on page 370 as 19.4/1.04, HD/PD). This does not include transplantation, it is the cost to Medicare (Part A, Part B and Part D) of people who use dialysis. The average yearly cost of Part B spending for someone who is Medicare Primary and using dialysis is a little more than $27,000 (Table 16 of the final rule on the ESRD PPS (Paragraph Citation: 75 FR 49072))
"Not everyone who's dialysis is primarily paid by Medicare is covered under the ESRD program; the majority are not. There are three ways to have Medicare Primary: Age, Disability, ESRD. The majority of dialyzors with Medicare Primary have coverage due to age, about 50%- I have not seen recent numbers for those with coverage due to disability vs. ESRD but I would guess they're about 50/50. So only 25% of Medicare primary dialyzors are covered due to the ESRD program, thus the cost of the Medicare ESRD program is more like 5 Billion. That's a lot of money but not as much as is commonly supposed." -  You might want to do a bit more research on the number of patients under the age of medicare eligibility who have other insurance.  However, let's say you are correct in the 25% figure, private insurance only remains primary the first 30 months before Medicare takes over the role.  And, yes, if Medicare is primary from the beginning, there is a 3 month waiting period before benefits go into effect.  And, we haven't even touched on state esrd programs for those who qualify for medicaid benefits as well.

I wasn't clear. Among the subset of patients who are Medicare Primary (about 75% of all dialyzors) their access to Medicare is due to three factors. Routine access due to age, access due to a determination of permanent disability, access due to ESRD. Imagine a ven diagram - some people would fall into more than one circle but the people whose only access is due to Section 299I, that is the people who can be properly said to be covered under the ESRD entitlement, comprise a small subset of those who's care is paid by Medicare.

"If there was never an ESRD entitlement Medicare would still be the largest payer of dialysis."  -  Only a recent phenomenon with the aging of the baby boomer generation.  Until as recently as the early 1990s, the average age of dialysis patients was 55.  Now, the average is up to around 65.   

By 1978 fewer than half of all those using dialysis had Medicare benefits due to Section 299I, as compared to 1974 when 68% had access due to Section 299I. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1808299/pdf/bullnyacadmed00110-0119.pdf

I haven't seen Section 299I beneficiaries broken out since Rettig's 1980 paper but there is no chance the trend reversed at any point. The effect of 299I was to speed the growth of the provision of dialysis but with in five years of the enactment of Section 299I the majority of Medicare beneficiaries receiving dialysis were covered outside of the ESRD entitlement.

"When the ESRD entitlement passed in 1973 it was a tiny part of the legislation. The most important part of the legislation had to do with extending disability access to Medicare. This came in with a two year waiting period. All the ESRD program did is shorten that waiting period to 3 months for those with ESRD. And by having a separate program it allowed dialyzors to keep benefits while working (vs. those on disability who mostly could not)." -  And why was it only a "tiny portion" of the legislation?  Based on the testimony and behind the scenes advocacy using statistics of only those cherry-picked to receive treatment at that time.  Remember, the financial burden was projected to be "just" 100 million for the program.  Also, by being singled out as the only disease to have its on entitlement (remaining so today), ersd patients actually were able to receive benefits from this program and the disability program.  ESRD did not allow, nor does it today, disability payments.  Those come out of the SSDI benefits.  Besides, one of the selling points of the esrd program was patients could have a quality of life to remain working. 

The Gottschalk Committee was formed in 1966 but there was a lot of activity even leading up to that - for a comprehensive analysis of those early years and the politics in play at the time I'd commend Rettig's 1976 report http://www.rand.org/pubs/papers/2008/P5672.pdf  The main part of the Social Security Amendments in 1972 extended disability benefits - it was the main part because it would effect far more people.  Seeing the tacked on Section 299I in the context of the larger legislation is important because it helps to explain why ESRD was singled out, especially when understood as the product of 10 years of prior public policy.

Again I think it is important to look at just the individuals who benefited by Section 299I coverage vs those that had coverage due to age or disability. By conflating the groups, as the New York Times did in their 1973 editorial, you end up overstating the cost of the unique entitlement.

"I don't think the record supports the idea that the ESRD program was mis-sold to Congress. There was very little discussion of the program at all. It wasn't mis-sold because it was never sold. It was however, misconstrued, almost immediately after the program launched - when all dialyzors (and their costs) were lumped together under supposed federal largess." - Again, I disagree.  There was FIVE YEARS worth of behind the scenes lobbying for the program.  Shep Glazer giving congressional testimony while on the dialysis machine was just the icing on the cake.  The visual needed more for public acceptance than the congressional entitlement.  And, the program was mis-sold given that the vast majority of those with renal failure at the time were not even given an option for treatment.  Universal access threw the doors off the hinges for them to receive access.  Do you really believe the medical community didn't understand or realize this concept?
Again I know the AAKP creation myth, but I take Rettig's history as the more credible version. http://www.rand.org/pubs/papers/2008/P5672.pdf

There is no question that Section 299I accelerated the growth in the use of dialysis but is it really in question about whether dialysis use was set to grow with or without the entitlement? Prior to the early '70s doctors made the initial decision about referring people for treatment, and in general it was the doctors who made the decision that dialysis was not appropriate for those over 50. Medicare covered dialysis from the beginning, it wasn't a matter of coverage. I think it is fair to say that Section 299I increased awareness of Medicare's coverage of dialysis treatments but of more importance was the gradual discovery that older and sicker people could be sustained by routine dialysis. That would have happened with or without the entitlement.

"As far as the recent healthcare changes resulting in the need for dialyzors to be "...'screaming' with every other self interest to get a piece of the limited medical benefits pie" doesn't make sense to me. The primary ongoing issue it that the dialysis population will grow older and sicker on average over time but that average hides the fact that a significant number of young(ish) people need to use dialysis and they are locked into a system that is designed to serve people who are much older and sicker." - Yes, you are correct in our population becoming older and sicker on average, but so will the population in general.  There will not be enough healthcare dollars to cover everything.  Something is going to have to give and I'm afraid we will once again go back to rationing.  So when I say "screaming with other interests" it will be so our program does not be unduly affected.  And the esrd program will be front and center.  The new head of CMS, Berwick, will not be a friend to our program.  Look at the influence he had on Great Britain's healthcare system.

I think this is wrong generally and in its details. I think Berwick is the best person to head CMS; I am in favor of comparative effectiveness research; this is taking this thread wide afield so I'll stop.

"It isn't all one problem and there are not clear divisions between dialyzors. As for the AAKP they haven't been central to ESRD policy for a decade, I too don't see that changing to be relevant any time soon." -  And that is sad.  We need a voice of credibility.  One that the media knows to turn to for the patient perspective.  I'm very uneasy about the huge push on this site for nocturnal/"optimal" dialysis being the panacea for renal failure treatment.  I see the similarities to the early days of dialysis with only the highly motivated and cherry picked patients utilizing this modality.  Saying that 50% of patients would benefit from it is an irresponsible supposition.   

There are too many variables in our population - from older and sicker patients (like you stated, which is only going to increase) to those whose access is a graft (major contraindication) to socio-economic factors such as the home is a health hazard and compliancy issues.   My ideal of "optimal" dialysis is a patient's informed decision for treatment based on knowledge of all available modalities and life priorities in coordination with the support of his advocate - his nephrologist. That's not expecting too much, now is it? (-: 

I question the wisdom of dialyzing less than 4 hours three days a week. Most people in the United States dialyze for less than four hours three days a week, I see this as a clear symptom of a dysfunctional system. I don't see a huge uptake in nocturnal dialysis happening anytime soon but that is a different question than would they benefit.

There are many ways to increase the available dose of dialysis - there are hundreds of clinics offering incenter nocturnal, though that doesn't help if there isn't one near you but there might be one. Most clinics don't even offer shifts starting after 5PM. Network 16 is the only network that has over 50% of the units offering evening hours. I would be very frustrated if I lived where incenter was my only option. Your dialysis options and thus your potential dialysis outcomes depend to a large part on your zip code.

[cariad]

Great post Cariad and thank you for the kind comments.  The polarity comes from many sources.   I suspect that we will internally need to overcome this polarity ourselves before we can move forward.  After all, what is more common in breaking up advocacy movements than to divide and conquer whether it is the false dichotomy between transplant OR optimal dialysis as well as Republican and Democrat. 

This is so true as to be nearly a law of advocacy: the group will turn on itself and no longer focus on the overall message. I think it has to do with the need to make a name for oneself - this is harder to do when just supporting someone else's ideas, so some people look for the disagreements.

And by the way, I am not in the least trying to take away your fun of bashing the Republicans, bash away, many of them really deserve it as well.

Ha, yes, this is fortunate as I am sure I will slip now and again. Feel free to call me on it, though. Old habits die hard and all that.

I kind of lump ALL politicians into the same sort of self serving group, call me cynical but so be it.

Yes, I feel the same. What heroes a few politicians could be to their constituents, though, if they would just champion the optimal dialysis cause. The opportunity is there for the taking....

Wow, Bill! I am going to have to carefully read through your entire post when I have more time. Perhaps I will eventually feel informed enough to write to my local politicians.

[MooseMom]

Some elements of this discussion remind me of the controversy within the deaf community regarding cochlear implants.  There are mindsets within deaf culture that deem it necessary to purge those who opt for this treatment.  We have to make sure that we are not split into transplant and/or dialysis factions.  We must concentrate on getting the most appropriate and best treatment for the individual patient...for ALL patients who suffer from renal failure.

It's true that this is not a Republican vs Democrat issue, but my representative happens to be a Republican and never let us forget his platform of personal responsibility and fiscal prudence.  Any time you want someone to really listen to you, you have to speak his language, and this is generally the language of Republicans.  It's not bad or wrong, it's just their idiom, and I will tailor my message accordingly.  If he had been a Democrat, I would have stressed that the current way dialysis is offered is unfair to those who may not have the resources or great good fortune to be able to dialyze more frequently at home.

[Hemodoc]

Some elements of this discussion remind me of the controversy within the deaf community regarding cochlear implants.  There are mindsets within deaf culture that deem it necessary to purge those who opt for this treatment.  We have to make sure that we are not split into transplant and/or dialysis factions.  We must concentrate on getting the most appropriate and best treatment for the individual patient...for ALL patients who suffer from renal failure.

It's true that this is not a Republican vs Democrat issue, but my representative happens to be a Republican and never let us forget his platform of personal responsibility and fiscal prudence.  Any time you want someone to really listen to you, you have to speak his language, and this is generally the language of Republicans.  It's not bad or wrong, it's just their idiom, and I will tailor my message accordingly.  If he had been a Democrat, I would have stressed that the current way dialysis is offered is unfair to those who may not have the resources or great good fortune to be able to dialyze more frequently at home.

Personal responsibility is the best option for a patient with dialysis starting with proper informed consent, then the next step is learning the difficult by not impossible task of self cannulation followed by taking treatments home.  Some state that this is placing the burden of dialysis on the patient and their family, but in reality, we do have a responsibility to take care of ourselves to the greatest extent we are capable.  It is also the cheapest and most effective method of performing dialysis and it always has been that way despite a longstanding propaganda mill stating the opposite.  I would think it would sell quite well to the Republicans of all politicians.  It is after all the true self care and taking personal responsibility for our own illness that gives us the best results and saves the most money in many different aspects.  Is not that really what America was built on in the first place?  It truly is a win win and what we are looking for.  I wish you luck.

[KarenInWA]

Personal responsibility is the best option for a patient with dialysis starting with proper informed consent, then the next step is learning the difficult by not impossible task of self cannulation followed by taking treatments home.  Some state that this is placing the burden of dialysis on the patient and their family, but in reality, we do have a responsibility to take care of ourselves to the greatest extent we are capable.  It is also the cheapest and most effective method of performing dialysis and it always has been that way despite a longstanding propaganda mill stating the opposite.  I would think it would sell quite well to the Republicans of all politicians.  It is after all the true self care and taking personal responsibility for our own illness that gives us the best results and saves the most money in many different aspects.  Is not that really what America was built on in the first place?  It truly is a win win and what we are looking for.  I wish you luck.

Hearing what goes on in some dialysis clinics makes me *want* to be responsible for my own care!  Who else is going to benefit the most from following procedure, giving me optimal dialysis, etc, except me?  I am an independent, self-sufficient person anyways (excpet when it comes to heavy things, plumbing, electricity, car repair, big spiders, and anything that requires a large amount of strength!) but, I do think there is a lot to be said with taking command of what I can in life.  Besides, I have a great paying job with really good benefits, and it will only benefit both me and society if I am able to be well enough to keep it!

Ultimately, I do want a transplant, and I am in the process of going through all the medical tests to get listed.  I am hoping everything comes out clear, but, I am not too sure.  My chest x-ray shows a mass in my right lung, and they want me to get a Chest CT.  Not happy about that.

KarenInWA

[Hemodoc]

Personal responsibility is the best option for a patient with dialysis starting with proper informed consent, then the next step is learning the difficult by not impossible task of self cannulation followed by taking treatments home.  Some state that this is placing the burden of dialysis on the patient and their family, but in reality, we do have a responsibility to take care of ourselves to the greatest extent we are capable.  It is also the cheapest and most effective method of performing dialysis and it always has been that way despite a longstanding propaganda mill stating the opposite.  I would think it would sell quite well to the Republicans of all politicians.  It is after all the true self care and taking personal responsibility for our own illness that gives us the best results and saves the most money in many different aspects.  Is not that really what America was built on in the first place?  It truly is a win win and what we are looking for.  I wish you luck.

Hearing what goes on in some dialysis clinics makes me *want* to be responsible for my own care!  Who else is going to benefit the most from following procedure, giving me optimal dialysis, etc, except me?  I am an independent, self-sufficient person anyways (excpet when it comes to heavy things, plumbing, electricity, car repair, big spiders, and anything that requires a large amount of strength!) but, I do think there is a lot to be said with taking command of what I can in life.  Besides, I have a great paying job with really good benefits, and it will only benefit both me and society if I am able to be well enough to keep it!

Ultimately, I do want a transplant, and I am in the process of going through all the medical tests to get listed.  I am hoping everything comes out clear, but, I am not too sure.  My chest x-ray shows a mass in my right lung, and they want me to get a Chest CT.  Not happy about that.

KarenInWA

I'm with you on everything except the big spiders, no thanks.  I lived up in Idaho where they have a LOT of spiders and quite big as well. Down here in "sunny CA" well snowy CA today, we have the black widows which we keep in check with Clark pest control. I really don't like those creepy creatures, in my mind God could have left them out of the creation, but I guess they serve a purpose as well.

I have a very small spot on my lungs but it hasn't changed.  I will keep you in prayer that it is benign which fortunately most spots on the lungs are.

God bless,

Peter

[Bill Peckham]

Rereading the 1976 Rettig paper after reading this thread is interesting. http://www.rand.org/pubs/papers/2008/P5672.pdf  One of the points he makes about medical professional's preference for transplant over dialysis is that it is in part due to what he calls the "aesthetic evaluation of therapies" (this starts on page 17 - it's a long paper but very good and startling in its relevance to this thread).


Rettig points out that people's view of dialysis were(are) informed by what happened with the iron lung - the technological solution: life in an iron lung vs the superior scientific solution: prevention with a vaccine.

[Hemodoc]

Rereading the 1976 Rettig paper after reading this thread is interesting. http://www.rand.org/pubs/papers/2008/P5672.pdf  One of the points he makes about medical professional's preference for transplant over dialysis is that it is in part due to what he calls the "aesthetic evaluation of therapies" (this starts on page 17 - it's a long paper but very good and startling in its relevance to this thread).


Rettig points out that people's view of dialysis were(are) informed by what happened with the iron lung - the technological solution: life in an iron lung vs the superior scientific solution: prevention with a vaccine.

I just read through that file once again.  There really was not any debate at the time in the 1972 hearings when they adopted the ESRD Medicare program. The debate really began in 1973 when they began to realize the cost of the program already adopted.  The 1978 hearings in which Dr. Edmund G. Lowrie, a high ranking official in the National Medical Care Inc. displayed false interpretations of the Seattle data the led congress to adopt in-center over home treatments.  The cost of in-center in I believe 1970 was about $25,000 and home after the first year was $7000, yet congress went along with his assessment against the objections of Dr. Chris Blagg who corrected the errors of Dr. Lowrie's testimony. That is where we began to go wrong and then the NCDS came out shortly after that and it has been downhill ever since.

[MooseMom]

I love spiders because I enjoy gardening, and spiders eat the nasties that dare feast on my posies.  They serve a VERY IMPORTANT PURPOSE!!

For anyone reading this thread, I just want to make it absolutely clear that I do NOT think that anyone who does not choose to dialyze at home is in any way irresponsible.  I understand entirely the desire to just jump into the chair and have someone else do all the work in a clinic.  If you have a great clinic with super nurses and techs, and if you are doing well with your treatments in center and do not wish to change, then that is terrific!  I think all patients should be able to make whichever choice suits them and their lifestyle.  I know that home dialysis is not for everyone; my own mother's circumstances made it difficult for her to dialyze at home, so I do understand the potential obstacles.

KarenInWA, I think your choice of home dialysis will suit you nicely, and I wish you all the luck in the world with that.  I am also hoping that the spots seen on your lungs will turn out to be of no consequence whatsoever.  Keep us posted, OK?

[Hemodoc]

I love spiders because I enjoy gardening, and spiders eat the nasties that dare feast on my posies.  They serve a VERY IMPORTANT PURPOSE!!

For anyone reading this thread, I just want to make it absolutely clear that I do NOT think that anyone who does not choose to dialyze at home is in any way irresponsible.  I understand entirely the desire to just jump into the chair and have someone else do all the work in a clinic.  If you have a great clinic with super nurses and techs, and if you are doing well with your treatments in center and do not wish to change, then that is terrific!  I think all patients should be able to make whichever choice suits them and their lifestyle.  I know that home dialysis is not for everyone; my own mother's circumstances made it difficult for her to dialyze at home, so I do understand the potential obstacles.

KarenInWA, I think your choice of home dialysis will suit you nicely, and I wish you all the luck in the world with that.  I am also hoping that the spots seen on your lungs will turn out to be of no consequence whatsoever.  Keep us posted, OK?

Dear MooseMom, it looks like you may need to write another email to Dr. Arthur Caplan who also gave a commentary on dialysis calling it lousy and cruel.

http://www.hemodoc.com/2011/01/nbc-commentator-dr-arthur-caplan-calls-dialysis-cruel-and-lousy-care.html

I didn't think it would take anyone too long to go to the nursing home patients and terminally ill. If we exclude these people from the first three months, it is likely that the majority of them do not survive past that point anyway.

[noahvale]

***

[Hemodoc]

@Hemodoc - January 02, 2011, 02:45:24 AM

Hemodoc -

I am not disparaging longer treatment hemodialysis.   In fact, I am very much in favor of it being presented to patients along with all other treatment options.  As an advocate, I believe patients should be given straight talk on the pros and cons of each treatment modality and then decide what would be best based on his/her medical status, and just as importantly, individual needs.   To my way of thinking, then patients would determine what is optimal for their situations through informed decisions.  I am more than willing to tell my story so they can understand why I have made my choices as well as have them talk to others who have chosen differently.  Yet, it is not ethical acting as a patient advocate to tell others what is best for them. 

However, there has been one time when I went against this principle - when high flux dialysis was rolled out and centers were raising blood pumps speeds to 500 and running patients for 1:45-2:30 hours per treatment.  This disgusting abrogation of patient care was totally based on increasing the corporate bottom line.  Providers knew they could get away with it because most of their in center patients were uneducated and would jump at the opportunity for less time on the machine. 

What I am disparaging is your supposition that ALL patients can benefit from more frequent dialysis.  This is absolutely not true.  Those who have grafts for accesses,  blind/visually impaired, and prone to seizures are just a few medical reasons why patients can not be referred to home hemo treatment.  Also, those who are medically more unstable will not be considered candidates for in center nocturnal because of limited staff during the overnight hours. 

While I agree wholeheartedly with you that many nephrologists have given over the right to prescribe treatment to the corporations they work for, I also hold to my view that their role should be as the patient advocate.  Unfortunately, they have allowed greed to get in the way of their oath as physicians to, "do no harm."

Even so, I believe a very large portion of nephrologists (the quiet majority) are getting fed up with how corporations are running dialysis facilities and putting profits ahead of patient care.  I see how it has started in Atlanta by Emory Healthcare, without outpatient dialysis since 1980, opening 3 facilities in the area.  Emory's nephrologists were no longer wanting to refer their patients to existing clinics and convinced the school of medicine to open their own.  Although the facilities are managed by a dialysis corporation, Emory nephrologists set clinic standards and determine quality of care issues.   

Another high profile example is the group of nephrologists in Denver who broke away from DaVita to start competing clinics with more emphasis on quality of care.  They are now feeling the wrath of DaVita through lawsuits, but have not given in.   It's not going to happen overnight, but there will be pressure from among the ranks and patients for them to clean up their act.

Yes, we both have concerns about Berwick.    If there is a push for extended funding to cover the more frequent dialysis modality, there will have to be comprises to the esrd program.  I see that as age and co-morbidity disqualifers. 

Please show me an example through my postings where I denigrated any of the pioneers of dialysis.  I have never questioned their genius, integrity, life-long commitment to the welfare of kidney patients or whether they had personal agendas at play. 

Does that mean I have to agree with their views on all issues or not be able to lament, while they were great minds when it came to esrd, they were not as well versed  outside of their area of expertise?   Obviously, you do have a problem with those who oppose your narrow definition of optimal dialysis.  That is just as dangerous as Dr. Murphy's view of transplantation.

Dear Noahvale, as a long term dialysis patients, congratulations on that accomplishment by the way, you are quite aware as you noted in your post above that the dialysis industry set the standards of care.  You state that I am incorrect when I state that ALL patients will benefit from more frequent or longer duration dialysis. I stand behind that statement not because it is my "narrow" view as you called it, but instead first of all because we know that the long weekend is deadly for ALL patients.  The greatest numbers of death for dialysis patients is on Mondays and Tuesdays for patients on TTS schedule. Going to every other day dialysis would eliminate that risk.

Secondly, you state my narrow view point is not correct for ALL patients, but once again, the America style, short, rapid and violent dialysis sessions with sodium modeling and high ultrafiltration rates are once again deadly especially to the old and infirm.  So just on those two points alone, I feel quite confident to state emphatically that ALL patients can benefit from longer duration and more frequent dialysis.  This is a clinical judgement.  If you wish to discuss financing options, that is another issue all together. But as a basic clinical matter, the current short thrice weekly business model of dialysis is not ethically sustainable.  I would further characterize my view point of optimal dialysis as quite broad, encompassing every other day dialysis in center for 4 hours all the way to that of daily, nocturnal dialysis at home. Not sure why anyone would characterize that as a narrow view.

God bless,

Peter