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Hemodoc
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« on: December 30, 2010, 10:18:26 PM »

NBC Report on Dialysis Reveals Continued Media and Nephrology Bias
By Peter Laird, MD

NBC did several background videos on dialysis to accompany their  recent ProPublica feature report which  in my opinion continues the false impression that dialysis is a horrible treatment and renal transplant is our only hope. They correctly pointed out the need for a fistula to avoid complications of catheters, patients fear of needles, risks of infection and reduced clearances, but the primary focus was that of renal transplant implying that renal transplant is the only true hope.  This report based on the ProPublica series returns to the sad bias, in my opinion, now also by NBC of the only hope for patients with CKD-5 is to avoid dialysis and get on the transplant list early.



Visit msnbc.com for breaking news, world news, and news about the economy



Visit msnbc.com for breaking news, world news, and news about the economy



Visit msnbc.com for breaking news, world news, and news about the economy

I would hope that one day, a true and unbiased report on all renal replacement options, including optimal dialysis strategies would be headline news on a national network. Unfortunately, even noting the ProPublica series as part of the NBC nightly news that accompanies these videos gives the very biased viewpoint that dialysis is dangerous and that the only hope is renal transplant. Yet, for those that are not part of the 15,000 or so that get a renal transplant in the US each year, we must continue with dialysis as our mainline treatment option.  Yes, for many, renal transplant transforms their life, but so likewise does daily, nocturnal dialysis which is equal in survival to cadaveric transplant, and you don't have to wait to survive 5-8 years to get that survival benefit. 

While I applaud the attention that NBC focused on the ProPublica Dialysis series, it did so in my opinion, by continuing the myth of the gift of life only from renal transplant.  In such, their report will only bring continued death and destruction to hundreds of thousands of dialysis patients because NBC chose to completely ignore optimal dialysis in these 4 segments.  What a failed opportunity.

The dialysis  industry spin continues and people continue to die needlessly because home dialysis options are overlooked at the hands of our nephrologists who fail to inform.  Dr. Barbara Murphy of Mount Sinai Medical Center, in my opinion, is simply the latest biased nephrologist failing American dialysis patients by lack of informed consent of all renal replacement options, even more so on a national news program.  Perhaps she did speak of optimal dialysis, and NBC chose to exclude that discussion in her three segments, I will give her the benefit of the doubt on that issue, but certainly NBC could have chosen to truly educate but did not do so in 4 separate dialysis segments.

You may wish to contact Dr. Murphy at the link above and inform her of your opinion on optimal dialysis issues as I plan to do myself since she failed to make mention of anything outside of in-center dialysis other than renal transplant in three news segments focussed on dialysis especially in light of the recent FHN results.  I will be more than willing to run a full rebuttal by NBC or Dr. Murphy on my blog as well, should they choose to do so.

Not surprisingly, Dr. Barbara Murphy's specialty is renal transplant medicine.  Why would NBC choose a transplant specialist to tell us about dialysis?  Why not a dialysis specialist such as Dr. Chris Blagg, Dr. Robert Lockridge or Dr. John Agar? I can only state that the bias against optimal dialysis appears to run deep in my opinion, even at NBC nightly news. After all, these 4 segments were featuring dialysis, not renal transplant.  Shall the truth ever be told? This is simply my own opinion and my own personal impression of the 4 NBC nightly news segments on Dialysis.

http://www.hemodoc.com/2010/12/nbc-report-on-dialysis-reveals-continued-media-bias-.html

To see the videos, go to NBC or see my post on Hemodoc
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
MooseMom
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« Reply #1 on: December 30, 2010, 10:39:51 PM »

I'll be writing to NBC and to the doctor.  I wonder if the patients that she interviewed had ever been told about optimal dialysis.  My guess is no.

I'll be the first one to declare that I want a transplant, that I want to avoid dialysis and that I am actively pursuing both of those goals.  But if despite everything I have to go on dialysis, I will NOT be a victim of the system.  These reports are indeed a missed opportunity.  But you know, news outlets are always searching for content in this 24 hour news-cycle world, and I am guessing that NBC might welcome a chance to spread the word about a "new" dialysis modality and the work that more and more people are doing to bring optimal dialysis to everyone.  NBC might have missed an opportunity, but we don't have to. 
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« Reply #2 on: December 31, 2010, 04:56:24 PM »

I'll be writing to NBC and to the doctor.  I wonder if the patients that she interviewed had ever been told about optimal dialysis.  My guess is no.

I'll be the first one to declare that I want a transplant, that I want to avoid dialysis and that I am actively pursuing both of those goals.  But if despite everything I have to go on dialysis, I will NOT be a victim of the system.  These reports are indeed a missed opportunity.  But you know, news outlets are always searching for content in this 24 hour news-cycle world, and I am guessing that NBC might welcome a chance to spread the word about a "new" dialysis modality and the work that more and more people are doing to bring optimal dialysis to everyone.  NBC might have missed an opportunity, but we don't have to.

Perhaps it is simply too much to ask that the real story of dialysis in America would ever be told and listened to. Until the market place focusses on home hemodialysis, it will remain an underutilized treatment.  What a shame when we learn that the majority of patients were dialyzing at home, thrice weekly for 27 hours a week before big business set the standards.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
noahvale
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« Reply #3 on: December 31, 2010, 10:55:13 PM »

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noahvale
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« Reply #4 on: December 31, 2010, 11:05:12 PM »

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Henry P Snicklesnorter
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« Reply #5 on: January 01, 2011, 12:16:17 AM »

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noahvale
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« Reply #6 on: January 01, 2011, 09:49:44 AM »

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Rerun
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« Reply #7 on: January 01, 2011, 10:08:39 AM »

If the public thinks dialysis is good and everyone loves it then they won't feel the pressure to donate.  I'm glad the public is led to view dialysis as horrible.  It is!  Who thinks going 3 times a week or even everyday to get your blood cleaned is a good thing?  I don't!

Moose Mom.... you need to wait until you are ON dialysis before you go writing letters. 

Transplant is the best thing.  I've had mine and don't choose to take another one due to a few reasons one being I have a 2% chance of matching and I don't want to go through all the bullshit to get one. 

I've chosen second best.  I hate it and my lifestyle is way way down compaired to my healthy friends.

Let the public think it is horrible because if they were on it for a week, they would think it was.

I do okay but I'm not gong to brag that I'm happy about it.

       :waving;

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MooseMom
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« Reply #8 on: January 01, 2011, 10:50:06 AM »

Moose Mom.... you need to wait until you are ON dialysis before you go writing letters.

And why is that?  I'll write letters whenever I want, thanks very much.  I watched my mother slowly die over 5 years of dialysis.  She didn't get any choices.  She was funneled into a system that didn't provide her with the best care.  I choose to write on her behalf.

I've always suspected that there is this public perception that esrd/dialysis affects more minorities, and since white people make the rules, the non-white people are left behind.  Sorry if that seems stupid, but tell me I'm wrong.  All of the celebraties we've heard about in the past few years that have gone public with esrd/transplantation have been of color...Alonzo Mourning, George Lopez, Tracy Morgan.  I do believe that there is an element of institutional racism when it comes to discussing funding for dialysis.

If you're going to push donation/transplantation in order to reduce overall federal spending on dialysis services, then we're going to have to take donation off the pedestal and get rid of the preciousness around it.  I don't know why people who chose to donate their organs after they die have to be lauded as heroes, as if donating when you are dead requires some great sacrifice on your part.  Once we change the mindset to accepting cadaveric donation as commonplace, then more people will of course sign a donor card or of course agree to have an opt-out policy and of course would just assume that their families would agree.

It can't come as any surprise that our society wants to spend as little money as possible on health care costs.  The bottom line is that transplantation in the US IS cheaper and for most patients, it IS the best treatment.  Having the best treatment also be the cheaper treatment is attractive, so I can't claim that it is a bad thing to have this particular treatment touted as most beneficial and cost-effective because it IS.

Henry, I am really, really glad that dialysis helps you to thrive and to enjoy your life to its fullest.  But I do have to wonder if you are in the majority or in the minority.  Maybe the propaganda has worked on me, but I find it very hard to believe that most dialysis patients in the US are like you.  I suspect Rerun's experience is more the norm...doing OK but wanting so much more.
« Last Edit: January 01, 2011, 10:51:25 AM by MooseMom » Logged

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« Reply #9 on: January 01, 2011, 12:03:25 PM »

If you're going to push donation/transplantation in order to reduce overall federal spending on dialysis services, then we're going to have to take donation off the pedestal and get rid of the preciousness around it.  I don't know why people who chose to donate their organs after they die have to be lauded as heroes, as if donating when you are dead requires some great sacrifice on your part.  Once we change the mindset to accepting cadaveric donation as commonplace, then more people will of course sign a donor card or of course agree to have an opt-out policy and of course would just assume that their families would agree.

I think cadaveric donors are lauded for several reasons. The most important, in my opinion, is that it gives meaning to the person's life and helps the family heal. Also, there are various stages of the designation 'deceased' and families of cadaveric donors are in the grey area where they have to trust in a doctor that even though their loved one is not technically fully dead, there is no hope for recovery and it would be the kindest thing to do to allow them to pass on and then use their organs. It doesn't help that every once in a while, doctors are wrong about this and someone makes a miraculous recovery.

Many years ago I watched a magazine program about a woman whose infant son died, and she donated his organs. They would not tell her where her son's heart went, but sensing that a baby receiving a heart transplant might be news, she used the Internet (still in its early stages) to find an article about identical twin baby boys who both needed heart transplants. She contacted the family and flew cross country to meet the mom while the little boy was still in hospital. The mother of the deceased boy even bought a silver heart and had it engraved that it was from her son to this little boy. Maybe the infant is not the hero, but I have to say that mother showed more grace than I believe I would have.

Racism - yes, probably. Also discrimination against the sick. I think people deep down believe that if you really wanted to feel better, you could. I think sick people internalize this and then feel guilty that they're not out there leaping tall buildings in a single bound. At least, I did even when intellectually I suspected that I really was not imagining the days I could barely get out of bed.

I think anyone who wants to write to NBC or congress or whomever about better dialysis funding and options that could improve quality of life for patients should be encouraged to do so. You don't have to have any personal experience, just familiarise yourself with the facts. If anyone out there wants to lobby congress for a national opt-out program, I certainly don't care what your life experience has been, I would say thanks!
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« Reply #10 on: January 01, 2011, 12:21:16 PM »

Moose Mom.... you need to wait until you are ON dialysis before you go writing letters.

And why is that?  I'll write letters whenever I want, thanks very much.  I watched my mother slowly die over 5 years of dialysis.  She didn't get any choices.  She was funneled into a system that didn't provide her with the best care.  I choose to write on her behalf.

I've always suspected that there is this public perception that esrd/dialysis affects more minorities, and since white people make the rules, the non-white people are left behind.  Sorry if that seems stupid, but tell me I'm wrong.  All of the celebraties we've heard about in the past few years that have gone public with esrd/transplantation have been of color...Alonzo Mourning, George Lopez, Tracy Morgan.  I do believe that there is an element of institutional racism when it comes to discussing funding for dialysis.

If you're going to push donation/transplantation in order to reduce overall federal spending on dialysis services, then we're going to have to take donation off the pedestal and get rid of the preciousness around it.  I don't know why people who chose to donate their organs after they die have to be lauded as heroes, as if donating when you are dead requires some great sacrifice on your part.  Once we change the mindset to accepting cadaveric donation as commonplace, then more people will of course sign a donor card or of course agree to have an opt-out policy and of course would just assume that their families would agree.

It can't come as any surprise that our society wants to spend as little money as possible on health care costs.  The bottom line is that transplantation in the US IS cheaper and for most patients, it IS the best treatment.  Having the best treatment also be the cheaper treatment is attractive, so I can't claim that it is a bad thing to have this particular treatment touted as most beneficial and cost-effective because it IS.

Henry, I am really, really glad that dialysis helps you to thrive and to enjoy your life to its fullest.  But I do have to wonder if you are in the majority or in the minority.  Maybe the propaganda has worked on me, but I find it very hard to believe that most dialysis patients in the US are like you.  I suspect Rerun's experience is more the norm...doing OK but wanting so much more.

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.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
MooseMom
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« Reply #11 on: January 01, 2011, 12:46:43 PM »

Hemodoc, someone is benefitting from keeping patients in the dark about the benefits of good dialysis and the risks of transplantation.  What do you see as the single biggest obstacle to getting optimal dialysis for all?  Is it simply a matter of funding?  How many patients who are now on thrice weekly inclinic hemodialysis do you think would be good candidates for nocturnal or NxStage?  I know that's a difficult question, but do you have any idea of the percentage of people who could be doing hemo at home but have not been offered that choice?

Ultimately, we have to be responsible for educating ourselves, but I don't know how people who have no internet access or little education or few resources can get the information that you and I can get.  People have their lives to lead and might have kids to take care of and jobs to attend to.  They SHOULD be able to rely on their medical teams to give them all information on how to achieve optimal dialysis and what happens with transplantation, but that's relying on luck. 

Cariad, cadaveric donation should be lauded just as you say; I guess what I'm trying to explain is that it would be good if more people more often would see donation of their loved one's organs as a way to express how much they value the person's life and how much comfort this decision could give them.  It shouldn't be such a difficult decision...it should be an easy one, and maybe in time, the collective thinking on this will be more along these lines.  I hesitate to say, "It would give ME comfort, so it should give OTHERS comfort, too!", but, well, I guess that's exactly what I am saying.  If  my son died and I thought his organs could save the lives of several people, that would give me a HUGE amount of comfort.  I wouldn't be haunted by feelings that his death was completely pointless and wasteful and his life ended up having not much meaning. 

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« Reply #12 on: January 01, 2011, 12:53:01 PM »

Hemodoc, someone is benefitting from keeping patients in the dark about the benefits of good dialysis and the risks of transplantation.  What do you see as the single biggest obstacle to getting optimal dialysis for all?  Is it simply a matter of funding?  How many patients who are now on thrice weekly inclinic hemodialysis do you think would be good candidates for nocturnal or NxStage?  I know that's a difficult question, but do you have any idea of the percentage of people who could be doing hemo at home but have not been offered that choice?

Ultimately, we have to be responsible for educating ourselves, but I don't know how people who have no internet access or little education or few resources can get the information that you and I can get.  People have their lives to lead and might have kids to take care of and jobs to attend to.  They SHOULD be able to rely on their medical teams to give them all information on how to achieve optimal dialysis and what happens with transplantation, but that's relying on luck. 

Cariad, cadaveric donation should be lauded just as you say; I guess what I'm trying to explain is that it would be good if more people more often would see donation of their loved one's organs as a way to express how much they value the person's life and how much comfort this decision could give them.  It shouldn't be such a difficult decision...it should be an easy one, and maybe in time, the collective thinking on this will be more along these lines.  I hesitate to say, "It would give ME comfort, so it should give OTHERS comfort, too!", but, well, I guess that's exactly what I am saying.  If  my son died and I thought his organs could save the lives of several people, that would give me a HUGE amount of comfort.  I wouldn't be haunted by feelings that his death was completely pointless and wasteful and his life ended up having not much meaning.

Dear MooseMom, that really is the $64,000 question as they say.  Perhaps it is better to show where we are losing the battle.  We are losing the battle in the popular press, the academic nephrology centers, the patient advocacy groups, the individual nephrologist, the dialysis center, the dialysis industry, CMS, Congress, I guess we are losing the battle everywhere.
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #13 on: January 01, 2011, 01:33:52 PM »

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Rerun
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« Reply #14 on: January 01, 2011, 04:42:23 PM »

The worst part of going back on dialysis was having to quit work also.  No one talked me into it.  I just totally exhausted myself trying to do both.  I'm single and do it all.  There was no one to cook my meals, clean my house, take out the garbage, wash my car or drive me.....  I was exhausted from dialysis and if I had a bad day or night it didn't matter I was expected (or I expected myself) to be at work by 8 the next morning.  It was a sad day but a big relief when I finally threw in the towel.

Moose Mom, forgive me I forgot you watched your Mother on dialysis.  You have a right to write.  But, you know what I'm saying.  I don't have a right to support presumed conscent from the point of losing someone only from receiving something.  People should talk of personal experience.  Otherwise it is just an opinion without much credibility behind it.  I'm just say'en......

I'm glad to know, Peter, that you think I have the best dialysis.  I do nocturnal 3 night a week.  I do much better as long as the machines work (which they don't always) and the techs are decent at their jobs.  But we have 20 chairs available at our unit and can't keep them full for the nocturnal shifts.  People don't want to spend that much time on the machine.  I've tried to talk people into it and they just don't want to sleep away from hubby or something. 

Racism:  No matter what "level" you are on except maybe the President, if you have esrd you will end up on dialysis and there is no levels there.  You get a chair... and it may not be the same one everyday.  I'm one who got a rude awakening when I got set between a black woman and a man who dressed like a woman who had a prosthetic leg which she/he put by me.  I was in dialysis hell.  I ended up becoming friends with the black woman.  I guess what I'm saying... we can choose where we shop (Macey's or Wallmart) we can choose which restaurants to go to but unless you do dialysis at home you get what you get.  I wish we had dialysis stores the Macey's and the Wallmarts and if you chose to go to the Macy's you got a hot cup of coffee or even an Espresso but nope you get what you get and I pay more but I don't get more.

There is a fairly new woman at my dialysis who is upper middle class and she gets the 25 year old homeless drunk to sit by (when he comes).  I just have to laugh at the looks she gives me to reflect her discontent.  I guess you have to find humor when you can.  But you ask yourself.... why on earth does it have to be like this. 

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.

(hey, I can now type as much as I want and the screen doesn't jump around)  Watch out!    :yahoo;

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« Reply #15 on: January 01, 2011, 06:30:22 PM »

There is a fairly new woman at my dialysis who is upper middle class and she gets the 25 year old homeless drunk to sit by (when he comes).  I just have to laugh at the looks she gives me to reflect her discontent.  I guess you have to find humor when you can.
That made me laugh, rerun.  :rofl; They say you can choose your friends but not your family. So too it would seem you can't choose your co-patients, who are a cross section of the general population.

Forum members are far from typical renal patients; indeed they are much more middle-class. You can tell from the absence of spelling mistakes and the absence of solecisms in their posts.  ;)
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Heart Attacks June 2005; October 2010; July 2011
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« Reply #16 on: January 01, 2011, 06:36:26 PM »


Nohvale 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.

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.

If there was never an ESRD entitlement Medicare would still be the largest payer of dialysis. When the ESRD entitlement passed in 1973 it was a 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).

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.

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.

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.




This would be an appropriate thread for comments to address numerous topics recently raised.  Again, please excuse the long essay.  I don't know any other way to give context to important issues.  And, if I'm repeating what has already been brought up before, sorry, I can't read everything on here!

First of all, I agree that for the most part, there is negative national media bias towards dialysis as a treatment for esrd.  This has been going on for years, mainly fueled by the NKF and organ transplant organizations to increase public awareness of the need for organ donation, and the NKF to promote its main goal, the eradication and treatment of kidney disease through research. 

[Even today, the NKF doesn't acknowledge dialysis treatment or dialysis patient success stories on it's home page. - www.kidney.org.  Maybe sometime soon I will start an essay on the pros and cons of this decision by the NKF.]

When the awareness campaigns went into effect back in the mid 1970's the public's view of organ donation, especially cadaver donation (only family members were even considered for live donation for medical and ethical reasons) was extremely negative.  People did not understand the concept and therefore were extremely skeptical.  Most religions were not in support of it and individuals were worried that if in an accident, they would be allowed to die so their organs could be taken.  It was going to take a massive education campaign to change these perceptions as well as persuade religious institutions that organ donation could fit within their belief systems.

Also, on a more subconscious level, the NKF had to overcome another problem most other major volunteer health agencies at the time did not have to worry about,  the perception of the kidney itself.   Here's a little word association exercise to illustrate.  What comes to mind when someone says:  heart? - love, valentine's day, life;  lung? - breathing; kidney? - peeing, bladder.  See my point?  While the American Cancer Association had the same problem as the NKF (cancer = death), the disease was so pervasive that just about every family had a member affected by some form of it.

So it was only natural for the NKF, as all other health agencies do promoting their causes, to appeal to people's emotional heartstrings.  And, for the NKF the message became - help support us so these poor afflicted people can get off this horrible form of treatment by signing an organ donor card and give us money for research to eradicate the disease for future generations.  Whether we - as patients/family members having to live with KD or any other illness agree or not, it is a proven strategy.

OK, now to focus back on just KD.  Media love visuals.  Research has shown readers of newspapers usually skip over articles that have no photos.  TV news watchers not only love visuals, but love visuals with negative drama.  What do you usually see in the first few minutes of the news?  Fires, murder, bank robberies, etc.  Feel good stories are relegated to the end and/or just a 30 second spot.  Controversy = high ratings, more ad revenues.  Feel good = low ratings, less ad revenues.  Even Oprah, the queen of feel good, has never had a successful dialysis patient featured on her show.  Transplant recipients, yes.  It's human nature, folks.  We are just more attuned because we are the ones affected.

So, why weren't dialysis patients more proactive?  Well, we tried. The first national organization dedicated to our well-being and interests was formed in 1969, NAPH, National Association of Patients on Hemodialysis, later becoming NAPHT (the T for transplantation) and finally changing its moniker to only a half mouth full - American Association of Kidney patients, AAKP.  Their main goal was to educate politicians to the life saving treatment called dialysis and lobby Congress for universal coverage of treatment through the medicare program.  This was actually one goal where the NKF and AAKP were in one accord, but to my thinking, with different agendas in mind.

Again, you need to understand why medicare funding became a successful effort.  In the mid-1960's to early 1970s, there were community panels who rationed this scarce medical resource called hemodialysis.  For the most part, the only people given serious consideration were those considered to be "contributors to society;" hard working, upper middle class white males between the ages of 25-45 with families, psychologically stable and with no other major debilitating illnesses.  Most did treatment in the evening hours at home - not because it was "optimal" (more on this topic later), but because there were only a few regional dialysis centers in the country - and continued to work during the day.  For most, it was an enormous strain on the family.  But, they did what they needed to do to survive.

This is an extremely important concept to understand.  Congress was persuaded in 1972 to fund the esrd program based on only the statistics of those cherry-picked to receive treatment.  It was estimated that the program would cost $250 million over 10 years.  Today, more than $14 billion is spent on the Medicare ESRD Program. The increase in costs came primarily from the larger than anticipated numbers of ESRD beneficiaries.  But it wasn't unanticipated by the physicians or providers!  They knew how many would benefit from universal access to treatment.  And, in my mind, that's more of the reason the NKF got behind the effort - to garner the medical community's support, not patient welfare.  Remember, their stated main goal is the eradication of kidney disease - not dialysis treatment.

AAKP's organizational leadership during the 70s and 80s was comprised of some of the best minds from the patient perspective, most notably, Peter Lundin.  Dr. Lundin, the first patient to go through medical school, residency, and internship while on dialysis, was an inspiration.  He dedicated his life to patient care as both a nephrologist and advocate.  It was an extremely fine line he had to walk and no one to this day has been able to come close to what he accomplished.  Other patients, just to name a few, who were instrumental in the early days of the organization included, John Newmann, Shep Glazer, Gerry Desner, Carol Robbin Myers, Paul Feinsmith, George Harper, Sam Orenstein, Jo Berman, Margaret Deiner (AAKP's first paid executive director) and Barry Friedman, who's spouse, nephrologist Eli Friedman, was a great supporter of AAKP.

Although it was national in concept, NAPHT/AAKP continued to play to its base for membership - middle class/upper middle class whites, even though esrd demographics were quickly changing with universal access to treatment.   It also remained provincial with leadership mainly coming from its roots in NYC and "satellite" constituencies that had moved to Florida. 

While the volunteer leadership and subsequently paid staff were knowledgeable about kidney disease, there were two glaring voids - weak development programs (fund-raising) and no concept on how to work with the media.  Plus, leadership always wanted to try to resolve important patient issues - quality of care, reuse, informed concept - within the renal community "family."   They did not particularly care to publicly air dirty laundry, especially since by the 1980s, medicare reimbursement rates were starting to take hits. 

Also, AAKP always relied too heavily on the renal industrial complex, nephrologists and ancillary staff members for funding ( a major conflict of interest when trying to get the same people to become more responsive to patient concerns!) and the membership, itself.  Only half-hearted attempts were made to get financial support or for that matter, support for the important issues to us, from the public.   When I stopped being active in AAKP in the early 90s, there were over 100,000 people on dialysis.  Yet, the organization's patient/family member paid memsbrship was around 7,000.  Today, AAKP it is still the most widely known patient organization, but I believe it has never reached its goal of being the true, effective voice of kidney patients. 

So why haven't we still gotten our message out to the public?  Key factors include:

1) We are a splintered voice. There needs to be one organization that truly speaks for us that can have an impact. 

2) No high profile celebrities, athletes, etc. on dialysis are willing to be front people for patient advocacy.  They all want transplants and end up promoting organ donation, usually through the auspices of the NKF.

3) Demographics.  While comprising only 25% of the population in the U.S., more than 50% of those with esrd are African Americans and Hispanics.  For numerous reasons, the majority of folks in these groups are either unwilling or unable to speak out.  Also, the fastest rising group of patients are the elderly with multiple medical issues.  Again, a population that doesn't have the ability to be out there advocating for "optimal" care.   

Finding one voice with clout to speak on our behalf is going to be extremely important in the future if Obamacare is allowed to roll out in all its glory.  We will be "screaming" with every other self interest to get a piece of the limited medical benefits pie.  Since the structure is already in place, the AAKP is the most logical choice.  Yet, I'm extremely pessimistic that its current leadership has the capabilities or even willing to allow those who do, to take on the roles through its auspices.

There's more, but I feel that this is both overload and probably not welcomed by most on this site.  However, this is based on 33 years as a patient, former NKF employee and AAKP/ESRD Network patient advocate. 

I will end by wishing all of you a happy new year in 2011!  ~ Noahvale
« Last Edit: January 01, 2011, 06:41:07 PM by Bill Peckham » Logged

http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
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Home Hemodialysis: 2001 - Present
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« Reply #17 on: January 01, 2011, 10:16:11 PM »

I agree until we have a major star (Tom Cruise? Julia Roberts?) affected with ESRD it is hard for people to care about finding a cure because "Hey at least they have dialysis." (of course I wouldn't wish dialysis on anyone) People don't want to care or think about things that don't affect them directly. It is sad that the media has an agenda. MOOSEMAMA keep writing your letters!!! :) I also agree with RERUN on transplantation is the a great option. I have experienced 10 years of health with a transplant and now dialysis...I will take a transplant everytime.


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Born with autosomal recessive polycystic kidney disease
1995 - AV Fistula placed
Dec 7, 1999 cadaver transplant saved me from childhood dialysis!
10 transplant years = spleenectomy, gall bladder removed, liver biopsy, bone marrow aspiration.
July 27, 2010 Started dialysis for the first time ever.
June 21, 2011 2nd kidney nonrelated living donor
September 2013 Liver Cancer tumor.
October 2013 Ablation of liver tumor.
Now scans every 3 months to watch for new tumors.
Now Status 7 on the wait list for a liver.
How about another decade of solid health?
noahvale
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« Reply #18 on: January 01, 2011, 10:29:03 PM »

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« Reply #19 on: January 01, 2011, 10:33:57 PM »

Henry, I really do understand the psychological impact of losing your "self" to esrd.  When you lose your job or your vocation because of illness, the result can be devastating on so so many levels.  You were almost a victim of "the system" in that "the system" assumed that being on dialysis naturally disables you.  You've proven that good dialysis can save your life and your health AND your heart and soul.  I just want everyone to receive dialysis in such a way that they don't have to be robbed of what they feel defines them.  Again, the "with no imput from me" circumstance is what is so crippling.  With esrd, the last thing you want is to be more out of control over your own destiny.  Like you, Henry, I have no intention of letting other people disable me, and I heartily applaud the fact that you didn't let anyone disable you, either.

Rerun, I do know what you're saying. :cuddle;

Re racism, what I was trying to say was that I have to wonder if minority populations are given the best information so that they can make informed choices.  I've taken my mom to dialysis clinics all over the country (we have family all over the US, and she likes to visit them), and I know that you can't choose your clinic-mates.  But I have to say that the vast majority of the patients that I saw were non-white, and it made me wonder if this population was getting good enough preventive, pre-dialysis care.  The truth is that diabetes and hypertension, the two biggest kidney killers, are more prevalent in African American and Hispanic communities, so with these populations more at risk of being under or non-insured, they are at higher risk of ending up on dialysis.  In-clinic dialysis seems to be a great equalizer, but the path to esrd seems to be shorter and rockier for non-white people or for people of a lower socioeconomic status.  I haven't seen any hard evidence in this regard, so if someone has some numbers to show me, I'd be interested.  I might just be talking out of my butt.  I'd love to see some figures showing who exactly is being encouraged to do dialysis at home.

Perhaps the answer to that particular query lies here:

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.   Taking Bill's statement further, perhaps the older and sicker dialyzors are not considered candidates for home dialysis, and the younger, fitter ones get forgotten. 

Hemodoc, we may be losing the battle everywhere, but maybe I can win a battle or two.  I don't know if I can fight Congress, but in my quest for optimal dialysis for myself, maybe I can drag some other people along with me, like my neph.  If patients don't even know what optimal dialysis is, then how can they fight for it?  I'm going to subtly ask my neph what his clinic does to educate patients, etc and how well home dialyzors are supported.  Don't know if I'll get an honest answer, but since I'm armed with good information, a clear goal and a healthy amount of rage, I'll find the truth.  I guess I'll just have to start with my own neph, my own clinic and my own treatment.

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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #20 on: January 01, 2011, 10:45:15 PM »

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? (-: 


No, that's not expecting too much, but I'd bet the north 40 that that's not what patients get.  My mom was an elderly dialysis patient.  She lost her renal function due to a botched aortic aneurysm repair.  Dialysis disabled her, and her neph was never her advocate.  Her clinic denied her nocturnal dialysis for reasons no one could ever explain.

I am young and fit despite fsgs, so I am a very different patient.  But no one has ever pro-actively talked to me about modalities or life priorities.  Any and all information I've acquired has come from my own research and from some well placed questions to my neph.

Two very different patients, but both received the same amount of information, ie just about zero.

noahvale, why would only the highly motivated people get more frequent, better dialysis?  Why can't optimal dialysis be more available in clinic and therefore open to more people?
« Last Edit: January 01, 2011, 11:06:30 PM by MooseMom » Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #21 on: January 01, 2011, 11:17:21 PM »

noahvale, I don't think that your suspicion that your views are unwelcomed by most on this site is true.  Even if it is, who cares?  I for one want to hear all sides of these issues, and boy, are there a lot of sides!!!
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
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« Reply #22 on: January 01, 2011, 11:29:57 PM »

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« Reply #23 on: January 01, 2011, 11:30:15 PM »

Henry, I really do understand the psychological impact of losing your "self" to esrd.  When you lose your job or your vocation because of illness, the result can be devastating on so so many levels.  You were almost a victim of "the system" in that "the system" assumed that being on dialysis naturally disables you.  You've proven that good dialysis can save your life and your health AND your heart and soul.  I just want everyone to receive dialysis in such a way that they don't have to be robbed of what they feel defines them.  Again, the "with no imput from me" circumstance is what is so crippling.  With esrd, the last thing you want is to be more out of control over your own destiny.  Like you, Henry, I have no intention of letting other people disable me, and I heartily applaud the fact that you didn't let anyone disable you, either.

Rerun, I do know what you're saying. :cuddle;

Re racism, what I was trying to say was that I have to wonder if minority populations are given the best information so that they can make informed choices.  I've taken my mom to dialysis clinics all over the country (we have family all over the US, and she likes to visit them), and I know that you can't choose your clinic-mates.  But I have to say that the vast majority of the patients that I saw were non-white, and it made me wonder if this population was getting good enough preventive, pre-dialysis care.  The truth is that diabetes and hypertension, the two biggest kidney killers, are more prevalent in African American and Hispanic communities, so with these populations more at risk of being under or non-insured, they are at higher risk of ending up on dialysis.  In-clinic dialysis seems to be a great equalizer, but the path to esrd seems to be shorter and rockier for non-white people or for people of a lower socioeconomic status.  I haven't seen any hard evidence in this regard, so if someone has some numbers to show me, I'd be interested.  I might just be talking out of my butt.  I'd love to see some figures showing who exactly is being encouraged to do dialysis at home.

Perhaps the answer to that particular query lies here:

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.   Taking Bill's statement further, perhaps the older and sicker dialyzors are not considered candidates for home dialysis, and the younger, fitter ones get forgotten. 

Hemodoc, we may be losing the battle everywhere, but maybe I can win a battle or two.  I don't know if I can fight Congress, but in my quest for optimal dialysis for myself, maybe I can drag some other people along with me, like my neph.  If patients don't even know what optimal dialysis is, then how can they fight for it?  I'm going to subtly ask my neph what his clinic does to educate patients, etc and how well home dialyzors are supported.  Don't know if I'll get an honest answer, but since I'm armed with good information, a clear goal and a healthy amount of rage, I'll find the truth.  I guess I'll just have to start with my own neph, my own clinic and my own treatment.

Dear MooseMom, your zeal is infectious.  Thanks for taking the responsibility upon yourself to spread the news.  That keeps old timers like me and Bill at it as well.  I would only caution you to prepare for a long and arduous and indeed frustrating battle.

God bless,

Peter
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #24 on: January 01, 2011, 11:45:24 PM »

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? (-: 

[/quote]

Dear Noahvale,

I am not sure why someone who labels himself as a dialysis advocate would disparage a treatment option with equal survival benefits of cadaveric transplant, the default gold standard of renal replacement therapy.  I would hardly call this proven modality anything in your terms of "panacea" and irresponsible supposition!!!! Sorry, in my opinion, that is quite an unsupported and in my mind irresponsible statement that does not in the least add to dialysis advocacy. I know of no patient who qualifies for dialysis that would not benefit from increased frequency and duration of dialysis modalities. Pauly, et al showed this in 2009:

Results. The total study population consisted of 177 NHD patients matched to 1062 DTX and LTX recipients (total 1239 patients) followed for a maximum of 12.4 years. During the follow-up period, the proportion of deaths among NHD, DTX and LTX patients was 14.7%, 14.3% and 8.5%, respectively (P = 0.006). We found no difference in the adjusted survival between NHD and DTX (HR 0.87, 95% CI 0.50–1.51; NHD reference group), while LTX survival was better (HR 0.51, 95% CI 0.28–0.91).

Conclusions. These results indicate that NHD and DTX survival is comparable, and suggest that this intensive dialysis modality may be a bridge to transplantation or even a suitable alternative in the absence of LTX in the current era of growing transplant waiting lists and organ shortage.

http://ndt.oxfordjournals.org/content/24/9/2915.full

I would further note that your approach of counting on the nephrology community in general is a failed approach as well since informed consent is rarely accomplished in America.  Dr. Lockridge has an excellent presentation on this issue as well that you can access at NxStageUsers.  The nephrologists have failed to be the advocates you so claim.

RESULTS: Substantial proportions of patients were unaware of their kidney disease (36%) or were not seeing a nephrologist (36%) until <4 months before first dialysis. The presentation of treatment options was delayed (48% either after or < 1 month before the first dialysis). The majority of ESRD patients were not presented with chronic peritoneal dialysis, home hemodialysis, or renal transplantation as options (66%, 88%, and 74%, respectively). Using multivariate analyses, variables significantly associated with selection of chronic peritoneal dialysis as dialysis modality were the probability of chronic peritoneal dialysis being presented as a treatment option and the time spent on patient education.

CONCLUSION: An incomplete presentation of treatment options is an important reason for under-utilization of home dialysis therapies and probably delays access to transplantation. Improvements in and reimbursement for pre-ESRD education could provide an equal and timely access for all medically suitable patients to various RRTs.


http://www.ncbi.nlm.nih.gov/pubmed/15954930?dopt=Abstract

I would further point out that ALL patients can benefit from more frequent or longer duration dialysis. If you wish to use potentially futile treatments of nursing home patients, I would find that a poor example of for the whole ESRD population.  True informed consent in that population would reduce that undo exposure in that population with little benefit.  Yet, the nephrologists who you state are our advocates eagerly collect the monies paid for their treatments.  In my opinion, you are completely overlooking the great conflict of interest that facing the average nephrologist in America to act in the position of our advocate.

You also appear to be overlooking the recent FHN which has confirmed the original treatment paradigms of the pioneers of dialysis which you appear in more than one post to denigrate.

CONCLUSIONS
Frequent hemodialysis, as compared with conventional hemodialysis, was associated with favorable results with respect to the composite outcomes of death or change in left ventricular mass and death or change in a physical-health composite score but prompted more frequent interventions related to vascular access. (Funded by the National Institute of Diabetes and Digestive and Kidney Diseases and others; ClinicalTrials.gov number, NCT00264758.)


http://www.nejm.org/doi/pdf/10.1056/NEJMoa1001593

In my opinion, you also appear to overlook the cost saving nature of home dialysis not only for the reduction in staff and overhead, but also in the substantial savings from reduced hospitalizations.

The mean age at the time of training was 58 years and mean vintage was 62 months. The mean treatment time was 147 min, and the mean number of treatments performed was 5.3 per week. When 1 patient with morbid obesity was excluded due to intentional weight loss, the mean dry weight at initiation of training was 71.9+/-12.4 kg and increased to 74.3+/-12.4 kg by the end of the study (p=0.66). The mean albumin increased from a baseline of 3.9+/-0.3 to 4.3+/-1.1 gm/dL during DHD (p=0.0015). The mean serum phosphorus levels were 5.4+/-1.4 mg/dL. Phosphate binder usage increased from a mean baseline of 2.6+/-1.4 to 4.2+/-2.6 tablets per meal during DHD (p=0.08). The mean delivered single pool Kt/V was 0.87 per treatment. During the 234 months studied, there were 11 hospital admissions (0.56 admissions per patient per year), with a mean length of stay of 3.7 days. Our results demonstrate that DHD improves nutritional status and decreases hospital admissions for dialysis-dependent patients.

http://www.ncbi.nlm.nih.gov/pubmed/17403175

I must conclude that for the above reasons, there is little that I agreed with in your post above. The one area that I do share your concern is in how Donald Berwick shall proceed.  I have read several of his papers from quite  some time ago and his focus I believe will be shifting monies from end of life treatments to preventive care, especially for the youngest patients.  His philosophy is to spend the money on those with the greatest life expectancy. By both a cost analysis and longevity analysis, dialysis patients do not fare well on those two terms alone.  However, this should move us to reduce cost of care by reduction of complications and hospitalizations through improved access to optimal dialysis options and self care, the exact strategy that the pioneers in dialysis took.

God bless,

Peter Laird, MD


« Last Edit: January 02, 2011, 12:16:52 AM by Hemodoc » Logged

Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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