I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Hemodoc 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
-
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.
-
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.
-
***
-
***
-
.
-
***
-
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;
-
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.
-
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!
-
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.
-
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.
-
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.
-
.
-
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;
-
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. ;)
-
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 (http://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
-
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.
-
***
-
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.
-
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?
-
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!!!
-
***
-
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
-
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
-
@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
-
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.
-
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/
-
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
-
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!
-
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. :rofl;
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.
-
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.
-
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
-
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.
-
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.
-
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.
-
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.
-
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
-
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 (http://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 (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 (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 (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 (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.
-
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.
-
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.
-
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.
-
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
-
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
-
Rereading the 1976 Rettig paper after reading this thread is interesting. http://www.rand.org/pubs/papers/2008/P5672.pdf (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.
-
Rereading the 1976 Rettig paper after reading this thread is interesting. http://www.rand.org/pubs/papers/2008/P5672.pdf (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.
-
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?
-
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.
-
***
-
@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
-
Noahvale you've stated a couple times that someone with a graft can't do HHD. That is not the case - Dan (aka DialysisDan (http://www.youtube.com/watch?v=rZ1NYEg46uE&)) has been self canulating his graft at home and on the road for several years (I saw him do it). Bob Lockridge has a majority of people using catheters in his HHD program. Access flavor isn't a barrier to HHD.
-
I'm not sure I see why "optimal dialysis" has to be synonymous to "home hemo". The goal is to achieve "optimal dialysis" in a whole plethora of settings.
With the dialysis industry rolling in money, I have little sympathy for those who cite "staffing problems" as an obstacle to in-center nocturnal dialysis.
I don't think there is much disagreement amongst us that the thrice weekly inclinic modality is a "business model" and NOT a "well-being model". This is the crux of the problem.
-
I'm not sure I see why "optimal dialysis" has to be synonymous to "home hemo". The goal is to achieve "optimal dialysis" in a whole plethora of settings.
With the dialysis industry rolling in money, I have little sympathy for those who cite "staffing problems" as an obstacle to in-center nocturnal dialysis.
I don't think there is much disagreement amongst us that the thrice weekly inclinic modality is a "business model" and NOT a "well-being model". This is the crux of the problem.
Dear MooseMom and Rerun, I have taken a new look at my article in light of your impression and addes more explanation and clarity hopefully to the points I was trying to make. Thank you for your comments, hopefully I have done a little better with my explanation of why I believe his article is quite biased and inaccurate. Thank you once again for your inputs, no man is an island unto himself.
God bless,
Peter