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« on: September 23, 2010, 07:47:57 AM »

ARTICLES & COMMENTARY

Is It Ever Right to Buy or Sell Human Organs?
By Sally Satel
New Internationalists
Thursday, September 23, 2010

ABSTRACT

AEI's Sally Satel, M.D., recently engaged in a debate about organ donation with Jeremy Chapman in New Internationalist magazine. Satel's remarks and summaries of Chapman's arguments follow.

Satel: The global organ shortage has spawned illegal and unregulated organ markets. The World Health Organization estimates that five to ten per cent of all kidneys transplanted annually--perhaps 63,000 in total--are obtained in the organ bazaars of Africa, Asia, Eastern Europe and South America. Thus, we face a dual tragedy: on one side, thousands of patients who die each year waiting for a kidney; on the other, a human rights fiasco in which corrupt brokers deceive indigent donors about the nature of surgery, cheat them out of payment and ignore their post-surgical needs.

Altruistic appeals to organ donation have not yielded enough organs for transplantation. Not all developed countries have made the most use of posthumous donation, and of course they should. Unfortunately, much of the world transplant establishment--including the World Health Organization, the Transplantation Society and the World Medical Association--focuses exclusively on obliterating organ trafficking. While at face value this may seem reasonable, in reality it is a lethally one-sided prescription, because trying to stamp out underground markets either drives corruption further underground or causes it to flourish elsewhere. Government-sponsored compensation of healthy individuals who are willing to give one of their kidneys to save the life of a dying stranger is the best short-term solution.

Chapman argues that organ donation after death is the only practicable solution for organ recipients.

Satel: Let me say a few words about myself. In August 2004 I became one of those whose 'drive for survival' became very strong. That's when I learned I had idiopathic renal failure. After a year of searching for a donor among people I knew well--and coming up empty--a casual (but now very dear) friend stepped in to spare me years of life-draining dialysis and premature death.

I am well aware of my good fortune. Many people without a donor are failing on dialysis, and some have no access to dialysis at all. And they will follow that survival instinct to foreign lands, despite the sickening knowledge that their new organ might come from an executed prisoner in China or an illiterate labourer in India. I, for one, had considered it. Your reference to 'opportunistic human cannibalism' took me aback. The tragedy we face is symmetric: hapless donors and wretched patients are locked in a morbid embrace. I outlined one model for disentangling them--a government-regulated programme of in-kind benefits to well-informed donors, offered by a third party and distributed to the next ill person, not the wealthiest. What innovations have you offered?

I realize that most types of organs must come from deceased donors. But let's be realistic about the extent to which deceased donation can help. You tell of Chinese prisoners who are shot for their organs. This horrific practice is precisely the kind of extreme situation that takes place when there is no legal alternative. If anything, it is an argument in favour of safe and legal means of rewarding donors. Developed countries must enlarge the pool of transplantable organs, by rewarding living and posthumous donors, if they are to keep some of their citizens from becoming reluctant participants in organ trafficking. Voluntary and compensated live donation for kidneys and deceased donation (compensated or not) can and should exist side by side.

Chapman argues that deceased donor programs are the central issue for organ donation.

Satel: I agree that countries can and should make better use of deceased donation. But even in Spain, which has the world's highest deceased donation rate, individuals continue to die waiting. Even non-renal organs, which are in lesser demand than kidneys, are not produced in adequate numbers, according to the Spanish National Transplant Organization. As for the US, you are mistaken. Of the roughly two million Americans who die annually, only 10,500-13,000 possess organs healthy enough for transplanting. Meanwhile, 85,000 Americans are waiting for kidneys.

I challenge your assertion that deceased donation evaporates when patients can obtain their organs from compensated donors. In Iran the government began compensating living kidney donors in 1988 and since then the waiting list for kidneys has dwindled. Yet Iran also established a deceased programme to increase the supply of livers, hearts, and lungs in 2000. Before passing a law allowing deceased donation, less than one per cent of kidney transplants came from deceased donors, but by 2007 this had risen to 16 percent.

Altruism, while a glorious virtue, is simply not enough. You have succumbed to the straw man argument that giving an organ for free is noble but doing so in exchange for material gain is a sordid affront to human dignity.

This is a false choice. Transactions on a black market are dangerous because they are illicit, not because they are transactions. There is a fertile middle ground on which to establish safe, legal programmes that protect donors who would be happy to accept enrichment for saving the life of another. Humanitarian and financial motives intertwine all the time. Are we any less grateful to the firefighters who rescue us because they are salaried?

Sally Satel, M.D., is a resident scholar at AEI.

http://www.aei.org/article/102564
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« Reply #1 on: September 23, 2010, 08:09:55 AM »

I had not really made up my mind on this issue.  I've liked the ideal of the "noble" and "heroic" altruistic donor.  But the author's statement

Altruism, while a glorious virtue, is simply not enough.  You have succumbed to the straw man argument that giving an organ for free is noble but doing so in exchange for material gain is a sordid affront to human dignity.

really resonates with me.  Her analogy to paying firefighters (or teachers or soldiers) does make me think.  I think her persuasive arguments may have convinced me.
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« Reply #2 on: September 23, 2010, 04:17:34 PM »

I don't think much of this article purely because it gives Chapman no space to explain his perspective.  It is a one sided presentation.  Why include Chapman's arguments at all if you are not going to give him any space to explain his stance.  Not good scholarship.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #3 on: September 23, 2010, 04:21:12 PM »

Here is the full debate, including Jeremy's side of the argument.

http://www.newint.org/argument/2010/10/01/human-organ-trade-debate/

Is it ever right to buy or sell human organs?
Share this: ShareThis Facebook Twitter
issue 436

A leading medical think-tank, The Nuffield Council for Bioethics in London, is currently examining this thorny issue. They are due to report their findings in 2011. In the meantime we have asked two experts to argue the case for and against.

We’d love you to take part in The Argument, a new feature in the magazine in which a different issue is debated each month. We’ll be printing a selection of your comments on the debate below next month - read the contributions from the two experts and join the conversation at the bottom of the page. We’d prefer you to use your real name, but want to hear what you have to say either way.
Sally Satel

The global organ shortage has spawned illegal and unregulated organ markets. The World Health Organization estimates that five to ten per cent of all kidneys transplanted annually – perhaps 63,000 in total – are obtained in the organ bazaars of Africa, Asia, Eastern Europe and South America. Thus, we face a dual tragedy: on one side, thousands of patients who die each year waiting for a kidney; on the other, a human rights fiasco in which corrupt brokers deceive indigent donors about the nature of surgery, cheat them out of payment and ignore their post-surgical needs.

Altruistic appeals to organ donation have not yielded enough organs for transplantation. Not all developed countries have made the most use of posthumous donation, and of course they should. Unfortunately, much of the world transplant establishment – including the World Health Organization, the Transplantation Society and the World Medical Association – focuses exclusively on obliterating organ trafficking. While at face value this may seem reasonable, in reality it is a lethally one-sided prescription, because trying to stamp out underground markets either drives corruption further underground or causes it to flourish elsewhere. Government-sponsored compensation of healthy individuals who are willing to give one of their kidneys to save the life of a dying stranger is the best short-term solution.
Jeremy Chapman
Chapman

So we start on common ground: illegal and unregulated organ markets are reprehensible consequences of individuals driven to seek transplantation therapy. The tragedy has played out across the world. The drive for survival is a very strong human instinct and one that overcomes feelings and common bonds between people. It overthrows decency and humanity and it requires consequentially strong and united laws and regulations. ‘I must leave the country tonight because they are shooting my donor tomorrow,’ was said by a patient to one of my colleagues recently. Such opportunistic human cannibalism has no place in healthcare.

Organ donation after death is the only practicable solution for heart, lung, pancreas, intestine, composite tissue and most liver recipients. There can be no solution that ignores the reality of people with these needs. By focusing on kidneys alone, where the solutions must embrace both the deceased and the living donor, you seem to have discarded the broader needs for transplantation. I thus seek more from you than a throw-away line on ‘the need to make the most use of posthumous donation’.
Sally Satel

Let me say a few words about myself. In August 2004 I became one of those whose ‘drive for survival’ became very strong. That’s when I learned I had idiopathic renal failure. After a year of searching for a donor among people I knew well – and coming up empty – a casual (but now very dear) friend stepped in to spare me years of life-draining dialysis and premature death.

I am well aware of my good fortune. Many people without a donor are failing on dialysis, and some have no access to dialysis at all. And they will follow that survival instinct to foreign lands, despite the sickening knowledge that their new organ might come from an executed prisoner in China or an illiterate labourer in India. I, for one, had considered it. Your reference to ‘opportunistic human cannibalism’ took me aback. The tragedy we face is symmetric: hapless donors and wretched patients are locked in a morbid embrace. I outlined one model for disentangling them – a government-regulated programme of in-kind benefits to well-informed donors, offered by a third party and distributed to the next ill person, not the wealthiest. What innovations have you offered?

I realize that most types of organs must come from deceased donors. But let’s be realistic about the extent to which deceased donation can help. You tell of Chinese prisoners who are shot for their organs. This horrific practice is precisely the kind of extreme situation that takes place when there is no legal alternative. If anything, it is an argument in favour of safe and legal means of rewarding donors. Developed countries must enlarge the pool of transplantable organs, by rewarding living and posthumous donors, if they are to keep some of their citizens from becoming reluctant participants in organ trafficking. Voluntary and compensated live donation for kidneys and deceased donation (compensated or not) can and should exist side by side.
Jeremy Chapman

Deceased donor programmes are the central issue for organ donation. In your country [the US] deaths on the roads alone are capable of meeting the needs of your population; in China there are 79,000 deaths each year on the roads. Harnessing the existing unavoidable mortality is sufficient to meet the needs if the scientific and social requirements to retrieve those organs are resolved. The system of both blood and organ donation that provides the best protection for both the donor and the recipient is altruistic gifting. The moment that money is introduced to buy a kidney from a vendor, the nature of the exchange and the motivation changes, and with that change come dangerous consequences for both parties. The donor changes, since those driven by money are the poor and the vulnerable in the community. The altruistic, related living-donor evaporates since the recipient can simply buy a kidney and recipients would rather put someone else at risk than their own family. The deceased donors evaporate, since there is no government drive for deceased donation; and the liver, heart and lung recipients simply die. I have just described [the situation in Iran] – the only country in which there is regulated organ sale. This is not a hypothesis, but a proven fact.
Sally Satel

I agree that countries can and should make better use of deceased donation. But even in Spain, which has the world’s highest deceased donation rate, individuals continue to die waiting. Even non-renal organs, which are in lesser demand than kidneys, are not produced in adequate numbers, according to the Spanish National Transplant Organization. As for the US, you are mistaken. Of the roughly two million Americans who die annually, only 10,500-13,000 possess organs healthy enough for transplanting. Meanwhile, 85,000 Americans are waiting for kidneys.

I challenge your assertion that deceased donation evaporates when patients can obtain their organs from compensated donors. In Iran the government began compensating living kidney donors in 1988 and since then the waiting list for kidneys has dwindled. Yet Iran also established a deceased programme to increase the supply of livers, hearts, and lungs in 2000. Before passing a law allowing deceased donation, less than one per cent of kidney transplants came from deceased donors, but by 2007 this had risen to 16 per cent.1

Altruism, while a glorious virtue, is simply not enough. You have succumbed to the straw man argument that giving an organ for free is noble but doing so in exchange for material gain is a sordid affront to human dignity.

This is a false choice. Transactions on a black market are dangerous because they are illicit, not because they are transactions. There is a fertile middle ground on which to establish safe, legal programmes that protect donors who would be happy to accept enrichment for saving the life of another. Humanitarian and financial motives intertwine all the time. Are we any less grateful to the firefighters who rescue us because they are salaried?

   1. B Einollah, ‘Is the Annual Number of Deceased Donor Kidney Transplantations in Iran Lower Than the Middle Eastern Countries?’ Transplantation Proceedings, September 2009 (vol 41, issue 7, pages 2718-2719).

Jeremy Chapman

You should take a long hard look at those 85,000 people who are registered in the US organ transplant system – a large number are never deemed fit enough actually to be transplanted by the listing transplant programme. Some 2,700 kidneys were discarded in the US last year – so the first place to make changes is in the efficiency of US systems.

Many ethical and trusting individuals like you, who advocate for buying organs, resolve the undoubted reality of abuse of the poor by the rich by using the reassuring words ‘safe and legal’. It is easy to minimize the conceptual consequences using words but so much harder in reality.

Let us take the example of the Philippines – here the trade in organs flourished until 2008. The vendors were poor people living in the slums and making a living off the waste tips of Manila and Quezon City. The kidney broker lives in the only brick home in the slum from which he extorts the kidneys, for a sum of money similar to his fee. The then president of the Philippines decreed the purchase of organs illegal. This led to a drop in the number of transplant tourists.

In Australia, by getting organized nationally, we are witnessing a 30 per cent rise in deceased organ donation this year and a rise in living kidney donation. The Transplantation Society, working with the Spanish National Transplant Organization and World Health Organization has derived a programme to achieve the changes you ask for. I cannot give you the recipe in a simple email, but if you visit these shores I can show you or you could look on www.donatelife.gov.au

Our job now is to assist the emerging economies of the world to do the same and not to rely on solutions that further entrench the disadvantages of poverty.
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Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #4 on: September 23, 2010, 05:10:06 PM »

OK.  I admit that when I read this article, I was thinking only of kidney transplantation, which is obviously a different kettle of fish when you consider that a person can donate a kidney and still LIVE.  Since kidney donation IS a different kettle, then perhaps it might be smart to have different criteria governing donation.  I can certainly see where compensating people for donating a heart would be VERY suspect, but I truly do not see the problem with having a regulatory body governing/overseeing a compensatory programme for people willing to donate a kidney.

I don't think Mr. Chapman has shown "scholarship" at all.  He hasn't offered anything new to the debate, which I find disappointing.  He consistently frames the argument in terms of the rich vs the poor, seemingly forgetting that poor people get ESRD at an even higher rate than rich people who can afford their meds and fresh foods and doctor's appointments.  I can't speak for Australia, but anyone in the US will tell you that more poor people suffer from the conditions that traditionally lead to ESRD, and it is these same people to whom transplantation isn't so readily offered as a possible treatment.  The problem of organ trafficking in third world countries is too big for my little renally-impaired brain, but I'd think that in the US, something will need to be done to address this problem.  More and more people are ending up on dialysis, and the cost to Medicare is enormous and will only grow.  I know that not everyone can or wants to be transplanted, but for those that do, there just has to be a better way.  Mr. Chapman does not offer any ideas in this regard, which to me is not merely poor scholarship, rather, it is NO scholarship at all.
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« Reply #5 on: September 23, 2010, 09:18:35 PM »

Wow, I cannot believe that Sally Satel is arguing for the Iranian system. I watched that documentary from the BBC, and anyone who could come away from that thinking "I hope we adopt that system in the US" is frankly beyond help. Also, I had always heard that there is no list in Iran - you pay for a live donor or you get nothing. And what does this do to improvements in dialysis. What about the hundreds of thousands who don't want or cannot receive a transplant? Where is the message for better dialysis from this doctor - is she that focused on winning this argument that she will throw out statements like "many people without a donor are failing on dialysis" (quantify, please!). How many of those without a donor would not be able to use a donor anyway, and then she mentions no access to dialysis. In this country? There should only be the smallest of numbers with no access to dialysis, and that means something has gone truly awry.

Sally Satel has been trotting out this tired argument for years and years now. As a kidney recipient, she bemoaned how much easier it would have been to just be able to go out and buy a kidney. It was a most unpalatable stance. Some men feel that way about sex, and I feel strongly that if you dangle money in front of people, we will have all the problems of  the sex trade, and a bit to spare. The exploitation of the poor IS the argument. I would think that would be enough to turn people off, but I have resigned myself to the fact that I will be continually amazed at what people will accept when it comes down to their own self-interest. And I don't understand that absolutely bizarre bit about the "hapless donors and wretched patients locked in a morbid embrace". Come again? What on earth is she talking about? People with no ear for metaphor should not even try.

I thought he added as many ideas as she did. How many people know that a thousand or so perfectly good kidneys are discarded every year? This was studied by an economist about 3 years ago, and the findings were alarming. I did not think it was as high as 2700, but does the exact figure really make a difference? He's right. How many of those people on the list are inactive, double listed, or whatever. The opt-out policy is not about altruism and I have no earthly idea why we would not start there, combined with streamlining the system.

My disgust with the US health care system is almost entirely down to the fixation with money. It is "a sordid affront to human dignity" - I shall be using that term every time I talk to an insurance company for ever after. Why would we want to deepen that fixation with adding another person in the transplant process with their hand out to the recipient. Health is not a basic right in this country the way it is in all the other Westernized countries the world over. To me it is not about altruism vs. capitalism, but the effect that these have on the very nature of transplantation. I do not believe that capitalism has had a single positive effect upon this process. I have been through it twice - once before things got crazy, and now, when my donor is called 24 hours after surgery and threatened that if he does not sort out our insurance, I don't get my drugs. One can only imagine the sorts of phone calls that would be placed if there were a significant sum of money at stake for the donor. I want to see capitalism wholly separated from medicine, and this is a step in a disheartening direction.

I am astounded that she thinks she has solved the organ shortage. What dollar amount would convince enough people to give up a vital organ? Can they find that magic number that makes this deal too irresistible for a large number of people? Would the government be willing to pay it? And then what happens when demand falls? Perhaps organs should be listed on the stock exchange. Then donors can be advised when to hold and when to sell....
« Last Edit: September 24, 2010, 08:13:46 AM by cariad » Logged

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« Reply #6 on: September 23, 2010, 10:11:28 PM »

Wow, I cannot believe that Sally Satel is arguing for the Iranian system. I watched that documentary from the BBC, and anyone who could come away from that thinking "I hope we adopt that system in the US" is frankly beyond help. Also, I had always heard that there is no list in Iran - you pay for a live donor or you get nothing. And what does this do to improvements in dialysis. What about the hundreds of thousands who don't want or cannot receive a transplant? Where is the message for better dialysis from this doctor - is she that focused on winning this argument that she will throw out statements like "many people without a donor are failing on dialysis" (quantify, please!). How many of those without a donor would not be able to use a donor anyway, and then she mentions no access to dialysis. In this country? There should only be the smallest of numbers with no access to dialysis, and that means something has gone truly awry.

Sally Satel has been trotting out this tired argument for years and years now. As a kidney recipient, she bemoaned how much easier it would have been to just be able to go out and buy a kidney. It was a most unpalatable stance. Some men feel that way about sex, and I feel strongly that if you dangle money in front of people, we will have all the problems of  the sex trade, and a bit to spare. The exploitation of the poor IS the argument. I would think that would be enough to turn people off, but I have resigned myself to the fact that I will be continually amazed at what people will accept when it comes down to their own self-interest. And I don't understand that absolutely bizarre bit about the "hapless donors and wretched patients locked in a morbid embrace". Come again? What on earth is she talking about? People with no ear metaphor should not even try.

I thought he added as many ideas as she did. How many people know that a thousand or so perfectly good kidneys are discarded every year? This was studied by an economist about 3 years ago, and the findings were alarming. I did not think it was as high as 2700, but does the exact figure really make a difference? He's right. How many of those people on the list are inactive, double listed, or whatever. The opt-out policy is not about altruism and I have no earthly idea why we would not start there, combined with streamlining the system.

My disgust with the US health care system is almost entirely down to the fixation with money. It is "a sordid affront to human dignity" - I shall be using that term every time I talk to an insurance company for ever after. Why would we want to deepen that fixation with adding another person in the transplant process with their hand out to the recipient. Health is not a basic right in this country the way it is in all the other Westernized countries the world over. To me it is not about altruism vs. capitalism, but the effect that these have on the very nature of transplantation. I do not believe that capitalism has had a single positive effect upon this process. I have been through it twice - once before things got crazy, and now, when my donor is called 24 hours after surgery and threatened that if he does not sort out our insurance, I don't get my drugs. One can only imagine the sorts of phone calls that would be placed if their were a significant sum of money at stake for the donor. I want to see capitalism wholly separated from medicine, and this is a step in a disheartening direction.

I am astounded that she thinks she has solved the organ shortage. What dollar amount would convince enough people to give up a vital organ? Can they find that magic number that makes this deal too irresistible for a large number of people? Would the government be willing to pay it? And then what happens when demand falls? Perhaps organs should be listed on the stock exchange. Then donors can be advised when to hold and when to sell....

Great summation of the issues.  Dr. Satel unfortunately leaves most of her writings very one sided.  Interestingly, one of my posts was used at a community college English class opposed to Dr. Satel.  Unfortunately, my response to her article came in a series of posts of which the English teacher only used one that had a limited view on how Dr. Satel did not give the inside story of why doctors at Kaiser did what they did with the regulatory world hanging over their heads.  Most of the students bought into the Satel view without reading any of my other posts which went into the areas of objection that they had with my post vs Satel. 

http://www.billpeckham.com/from_the_sharp_end_of_the/2010/04/dsen-goes-to-college.html

Unfortunately, when people approach this issue from an emotional viewpoint, Satel is very persuasive, but Dr. Chapman points out many realities of her premises that will not deliver as she promises.  The BMJ had a prior editorial on these issues with a colleague of Dr. Satel's that DSEN discussed back in 2008.  Her arguments do remain the same and putting forward the Iranian system as the example for the world to follow is ludicrous.  Fortunately, the current status of their proposals is not accepted by the politicians at hand.  I corresponded with Dr. Chapman as well as Dr. Benjamin Hippin who works along side Dr. Satel in the payment for organ donation movement.  They are sincere people in their pursuit, but I don't believe that there solution is the correct solution as well.

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

I have yet to see any comments from this group of people supporting payment of organ donation stand up publicly for optimal dialysis which has a much greater potential of saving lives immediately here in the United States.  The answer to renal donation starts with renal disease prevention which we are failing miserably.  Many rightly in my opinion believe the focus should be on preventing renal disease from HTN, diabetes and obesity.  If we save the person's native kidneys, there is no need to stretch the ethical boundaries with payment for organ donation.
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« Reply #7 on: September 24, 2010, 02:09:39 PM »

So, what is the solution for people like me who are not obese and are not diabetic but who would like to live a chance to live a normal life again via transplantation?  My renal disease was not "preventable", and my native kidneys can't be saved.  I don't need a lecture.  I don't need to peruse the issues.  I'd like to see some creative, practical proposals.

I don't care what they do in Iran.  I live in the US, and I care about what we do HERE, but what we do here is nil.  I don't care to trust my life to anyone's altruism.  There is very little of this particular quality in people these days.  That's not to say that I want to see organs available on the open market, either, but surely something needs to be done to further encourage donation.  We can't even agree to an "opt out" system because we are soooo afraid of ....what?  I'm not sure what the problem is.  I guess we just assume that Americans are too damn lazy to actively "opt out."

It would be wonderful if everyone could get "optimal dialysis", but like with everything in this country, we are less likely to get it now than ever before.  There's not enough money, and if you think that paying for organs is appalling, then it is equally appalling to have to rely on the purse strings of corporations to ALLOW you to have any dialysis at all.  It's a different kind of victimization; exploitation in a different guise.
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« Reply #8 on: September 24, 2010, 02:45:42 PM »

I apologize for my tone.  I'm just very angry and frustrated.  I utterly and profoundly despise the notion that I have to wait for someone to die for even the CHANCE to have better health.  If you're a happy bunny on dialysis, then you are truly blessed but I have to admit that I do NOT want to go on dialysis, optimal or not.  I deeply resent the idea that I have to rely on ANYONE, to be at the mercy of ANYONE.  It infuriates me.  I didn't ask for this.  I've always taken care of myself but it hasn't stopped my kidneys from dying for reasons that no one can explain to me. I'm supposed to live in a wealthy and prosperous nation full of wonderful, altruistic, charitable and spiritual people, but I will probably die before anyone would care to save me.  We don't care about the poor nor the disabled nor the uninsured nor anyone who we think is different from us in any way, so why should anyone care about little ol' me?  Am I really supposed to wait for someone's death or for someone's mercy?  Really?  That's the treatment plan?  Really?  And for the thousands of other people who are just like me, "REALLY?"
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« Reply #9 on: September 24, 2010, 03:41:59 PM »

MM, hun, I hear you.  :cuddle;

There is so much I could say in response to this, but I am not sure where to begin. And I don't fancy going too deep into my personal life in such a public space. I think most of us know you well enough by now to know that you just needed to get some of that out.

Dialysis is the treatment plan. Transplant is another treatment plan when it becomes possible. Same as for most diseases, there are options (if one is lucky) but not all of them are viable for every patient.

We all have to rely on other people, some just will never admit it (Ayn Rand). The line about obesity and diabetes troubles me, but perhaps that was just said in haste. I don't judge patients. There is this myth that just will not die under any circumstance, that certain people have brought this on themselves. I will beat that myth senseless until the day I die. My renal failure probably was preventable, but what does it matter how we got here? I don't want to see this community divide itself into who deserves a transplant and who does not, who deserves renal failure and who does not.

I would like to see reimbursement for donors, but not a lottery-style payout. Travel expenses, medical expenses that result from the donation, even lost wages (though only to a point). Some donors are just people who would jump at the chance to help someone (my original donor, oh but don't get me started....). Live donation is a big, big deal. Money is probably the ultimate coercion globally, and I thought that was the whole bloody point of these endless evals that my donor was put through - is he making this decision because he wants to help, or because he wants to take a month in Tenerife? The motivation matters if you are lying in hospital on the verge of a complete mental collapse because you had no idea it was going to be this painful.

Whether donors are paid or not, it is still their option to sell or not, so I do not see how this would solve your problem of not wanting to rely upon anyone. You would still have to rely upon the doctors. You see where I am going. A normal life on transplant? Define it on your own terms and you'll always have a normal life. I agree with you that insurance is exploitation, I have argued this extensively, but it exploits the sick as opposed the poor. I was surprised that you were on the Satel side of this issue. I'm not sure why, though.

Sally Satel is the one who brought up Iran, and using Iran as a positive example in transplantation is a "sordid affront to human dignity" (How I have taken to this phrase!) I don't know her, perhaps she is just the sweetest woman in person, but there is something of a "Waiting for transplants? Why that's for the little people!" tone to some of her statements. Sometimes people do not realise how they come off. I do care what goes on in Iran. They are people. It breaks my heart.
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« Reply #10 on: September 24, 2010, 04:45:52 PM »

I know we all have to rely on other people, and that's fine as long as you get to choose when and on whom you get to rely.  When it comes to the medicalization of my life, I haven't been able to choose anything or anyone.  I can learn to rely on people I've come to know and trust, like my doctors, but I don't like having to rely on complete strangers, particularly dead ones.  I'm sure that everyone who thinks about transplantation worries about the agonies involved for donors' families.  It makes me extremely uncomfortable to know that my own life could be made better by the death of another, so much so that I am thinking twice about the whole thing.  On the other hand, perhaps it would be a comfort to a family to know that the death of their loved one helped someone out.  How can I know?

Dialysis is not a treatment plan.  It is a sordid affront to human dignity.

I'm not on anyone's side; all these people just talk and don't do anything but talk some more, and then we sit around and talk about what they've talked about.  Both sides tend to think in black and white and in broad generalizations to boot.  I honestly didn't get the "waiting for transplants is for little people" side of Satel's argument.  I heard, "I've had some personal experience in this regard, and it is horrible, and I'd like to find a way to help other people avoid this fate.  Human organ trafficking is abhorent but it goes on because there are no regulatory programmes in place internationally.  We need to stop that, and here is what I propose."  I hate to draw parallels, but perhaps it is something akin to the abortion debate; it is a terrible thing, but people will still do it, so do we regulate it and make it safe or do we just ignore it while making moral judgments about how horrible it is (all the while refusing access to contraception ie "optimal dialysis")?  But this is the point of these types of discussions between IHD members; we all have our prisms through which we interpret things we read, and I am always happy to share ideas and insights.  I'm never afraid to change my mind or to come to a different conclusion.  I welcome the opportunity to be proven wrong.  I am not as well versed in either Satel's or Chapman's work as you are, so perhaps I have completely missed the whole point of everything here.

I, too, abhor this idea of anyone being judged.  I did not mean to imply that; I was just commenting on hemodoc's wish to see more preventative care.  I am all for that, and this is where being poor in the US means that you are judged in a different sort of way.  We all know that poorer people are at MUCH greater risk for the conditions that lead to ESRD...obesity, etc...and we as a society have, in my view, judged them when we decided that America doesn't believe in universal health care.  So, I am in full agreement with you in this regard, Cariad.  I apologize if my wording was sloppy and open to being misconstrued.

One thing of which you can be sure...I would NEVER EVER take it upon myself to decide who was deserving of ANYTHING.  In my world, what one "deserves" is completely and totally irrelevant.  The world doesn't work that way, and neither do I.  I wish to be very clear on that point.  :cuddle;

I care about all people who are sick and desperate, whether they be Iranian or not.  Again, my wording was sloppy.  I meant that any policies in Iran are above my pay grade.  I can't influence what happens there, but maybe I can influence things that happen here.  I can't save the world because I'm too sick, so I will leave that to someone else.  I wish I could believe that trafficking would stop only because it is so abhorent, but I don't think that will happen, and it isn't enough for us to just throw up our hands in horror at the idea that it goes on in the first place.  The moral high ground doesn't always get you very far, unfortunately.  Do you think that reimbursement for donors like you outlined in yhour post might decrease the levels of trafficking in other countries?  I don't know much about this topic...what can you teach me? :thx;
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« Reply #11 on: September 24, 2010, 04:53:47 PM »

Talk about one system for the rich and another for the poor. But there ought be some sort of compensation for volunteer donors such as hotels stay, free hospital fees and transport costs.
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« Reply #12 on: September 24, 2010, 05:04:25 PM »

Talk about one system for the rich and another for the poor. But there ought be some sort of compensation for volunteer donors such as hotels stay, free hospital fees and transport costs.

Agreed.  I'm sure there are other posts about this, but what happens in Australia?  What kind of compensation is there for donors?  I'm assuming that their medical costs are paid for?

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« Reply #13 on: September 24, 2010, 05:14:31 PM »

The answer to renal donation starts with renal disease prevention which we are failing miserably.  Many rightly in my opinion believe the focus should be on preventing renal disease from HTN, diabetes and obesity.  If we save the person's native kidneys, there is no need to stretch the ethical boundaries with payment for organ donation.

This is not going to happen as long as access to healthcare is governed by corporate interests.  Large insurance companies have decided, wrongly, that there is no profit in disease prevention.  Big Pharma is the same as they want as many people as possible taking their drugs.  All kinds of ethical boundaries have been stretched beyond recognition.  I agree with you, but unfortuately, my agreement is irrelevant in the grand scheme of things. 
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« Reply #14 on: September 24, 2010, 05:35:38 PM »

I am going to jump in.  I am not going to make it personal, and I am not going to bury people with scholastics.

I am against an organ market. We live in a society where we can't even manage our deceased donors efficiently.  Our provision of dialysis has been made almost third world by greed and mismanagement - making people fear and blame the treatment that keeps them alive - rather than those who profit from it.

( I lied) I will make it personal now. When I am in a room with Sally Satel at any time in the future, I will have all I can do to refrain from slapping her. She is as guilty of hyperbole and spin as any propagandists that I have seen or heard - really, IRAN???  Hey, they have a new missile system too, it is called "the Peacemaker".... Oh and I forgot, their President says that no one is gay there either, no human rights violations, and their organ market is robust and working really well. And I look like Claudia Schiffer, ok, well, I am tall....

Hyperbole and scare tactics and seemingly simple answers to complex problems happen on both sides. I just find her more egregious - she should know better -but then again, her fear of dialysis spurred her into never experiencing it - she can only share her experience of fear of the unknown.  I have named her the Marie Antoinette of CKD-5.  Her head is so buried in the sand, to me, her words simply read like: "Let them buy kidneys" when we can't even pay for our immunosuppressives, and deserving people can't get a perfect match kidney because of travel issues.

Instead of using her education and contacts to realistically fix the current system, Sally Satel is flaming the fires of debate about a system that can never be put in place in this economic climate - and I am not even going to touch on ethics.

How about using the 20% of donated kidneys that are WASTED on the table?  How about donating hep positive kidneys to hep positive recipients? How about taking care of current altruistic donors?  If we can't do this now, what on earth makes anyone think that we can run an organ market ethically and efficiently? Why can't we get transplant centers to coordinate more efficiently?  Why are domino transplants not the norm? Why did DaVita pay Kent Thiery 11 MILLION dollars last year, yet DaVita still can cut corners and staffing so drastically that their patients suffer?

If our system were working effectively and still there was an organ shortage - we should spend time discussing buying body parts from people who need the money.  Hey, isn't that was free enterprise is all about? But for now, everyone is fighting the wrong battle. Buying a kidney legally or illegally will only "Fix" the fear and paranoia of the purchaser, and give the seller some cash (best case scenario). Fixing the current system will benefit society and those that follow in our footsteps.  I am on society's side.  To me, this conversation is like Nero discussing buying a new fire truck as Rome blazes around him.
« Last Edit: September 24, 2010, 05:43:51 PM by Meinuk » Logged

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52 with PKD
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nxstage 10/07 - 11/08;  30LS/S; 20LT/W/R  @450
temp. permcath:  inserted 5/07 - removed 7/19/07
in-center hemo:  m/w/f 1/12/07
list: 6/05
a/v fistula: 5/05
NxStage training diary post (10/07):  http://ihatedialysis.com/forum/index.php?topic=5229.0
Newspaper article: Me dialyzing alone:  http://ihatedialysis.com/forum/index.php?topic=7332.0
Transplant post 11/08):  http://ihatedialysis.com/forum/index.php?topic=10893.msg187492#msg187492
Fistula removal post (7/10): http://ihatedialysis.com/forum/index.php?topic=18735.msg324217#msg324217
Post Transplant Skin Cancer (2/14): http://ihatedialysis.com/forum/index.php?topic=30659.msg476547#msg476547

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« Reply #15 on: September 24, 2010, 06:14:42 PM »

Dialysis is not a treatment plan.  It is a sordid affront to human dignity.
;D LOL!  Well said!  Some versions of dialysis sound that way, anyway.
MM, your tone is always very human, your tone is fine.  Can't contribute anything else to this discussion, when it comes to the transplant economy, I am speechless.  If I ever come across anything sensible or new on the topic, I'll post it then.
« Last Edit: September 24, 2010, 06:25:22 PM by natnnnat » Logged

Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #16 on: September 24, 2010, 06:34:36 PM »

So, what is the solution for people like me who are not obese and are not diabetic but who would like to live a chance to live a normal life again via transplantation?  My renal disease was not "preventable", and my native kidneys can't be saved.  I don't need a lecture.  I don't need to peruse the issues.  I'd like to see some creative, practical proposals.

I don't care what they do in Iran.  I live in the US, and I care about what we do HERE, but what we do here is nil.  I don't care to trust my life to anyone's altruism.  There is very little of this particular quality in people these days.  That's not to say that I want to see organs available on the open market, either, but surely something needs to be done to further encourage donation.  We can't even agree to an "opt out" system because we are soooo afraid of ....what?  I'm not sure what the problem is.  I guess we just assume that Americans are too damn lazy to actively "opt out."

It would be wonderful if everyone could get "optimal dialysis", but like with everything in this country, we are less likely to get it now than ever before.  There's not enough money, and if you think that paying for organs is appalling, then it is equally appalling to have to rely on the purse strings of corporations to ALLOW you to have any dialysis at all.  It's a different kind of victimization; exploitation in a different guise.

Dear Moosemom,  no lectures or anything else, I am likewise a person with renal disease not of my own choosing, with no known cure or prevention.  The point that many, not just me make is that the rate of newly diagnosed renal disease is outstripping our resources.  This profoundly affecting all aspects of renal replacement therapy including renal transplant since the list is growing faster than the growth of donation.  Many may not realize that the number of transplants is expanding but not at the rate of new dialysis patients.  If the preventable renal disease is slowed down, then the other resources for people such as you and me will open up and relieve the pressure upon the renal transplant system.  That is the point of focussing on prevention, it frees up the entire system.

As far as optimal dialysis, I believe that we are making headway in the fight to bring optimal dialysis to America.  The issue of finance for optimal dialysis is not what many would think since several studies have shown that home hemodialysis saves about $30,000 each year per patient.  Even for those who are not able to self dialyze at home, the cost savings for those that can will likewise free up the system for those that can't so that no one needs to suffer from too little dialysis anymore.  That is the crusade of DSEN.

Meinuk is absolutely right about Dr. Satel that she doesn't represent the reality of the situation as someone with her credentials should surely understand.  It is one thing to present compelling information but when mitigating information is withheld, is that how we should seek these discussions?

Lastly, it is quite ironic that at a time when altruistic donations are at their highest, altruistic donation is lambasted in the popular press.   The reality is that the many chains of renal donation we here about in the news are often only completed or started by a complete stranger offering altruistic sacrifices to people they have never met.  The issue of altruistic donation is far from maxed out.  The model that Satel and others propose would destroy the altruistic system.  For the thousands of altruistic donations each years, whether deceased or living, Satel does not speak for them.

The issues are difficult yet with application of optimal dialysis as a bridge to transplant, America can do much better.

God bless,
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All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #17 on: September 24, 2010, 06:47:55 PM »

I am going to jump in.  I am not going to make it personal, and I am not going to bury people with scholastics.

I am against an organ market. We live in a society where we can't even manage our deceased donors efficiently.  Our provision of dialysis has been made almost third world by greed and mismanagement - making people fear and blame the treatment that keeps them alive - rather than those who profit from it.

( I lied) I will make it personal now. When I am in a room with Sally Satel at any time in the future, I will have all I can do to refrain from slapping her. She is as guilty of hyperbole and spin as any propagandists that I have seen or heard - really, IRAN???  Hey, they have a new missile system too, it is called "the Peacemaker".... Oh and I forgot, their President says that no one is gay there either, no human rights violations, and their organ market is robust and working really well. And I look like Claudia Schiffer, ok, well, I am tall....

Hyperbole and scare tactics and seemingly simple answers to complex problems happen on both sides. I just find her more egregious - she should know better -but then again, her fear of dialysis spurred her into never experiencing it - she can only share her experience of fear of the unknown.  I have named her the Marie Antoinette of CKD-5.  Her head is so buried in the sand, to me, her words simply read like: "Let them buy kidneys" when we can't even pay for our immunosuppressives, and deserving people can't get a perfect match kidney because of travel issues.

Instead of using her education and contacts to realistically fix the current system, Sally Satel is flaming the fires of debate about a system that can never be put in place in this economic climate - and I am not even going to touch on ethics.

How about using the 20% of donated kidneys that are WASTED on the table?  How about donating hep positive kidneys to hep positive recipients? How about taking care of current altruistic donors?  If we can't do this now, what on earth makes anyone think that we can run an organ market ethically and efficiently? Why can't we get transplant centers to coordinate more efficiently?  Why are domino transplants not the norm? Why did DaVita pay Kent Thiery 11 MILLION dollars last year, yet DaVita still can cut corners and staffing so drastically that their patients suffer?

If our system were working effectively and still there was an organ shortage - we should spend time discussing buying body parts from people who need the money.  Hey, isn't that was free enterprise is all about? But for now, everyone is fighting the wrong battle. Buying a kidney legally or illegally will only "Fix" the fear and paranoia of the purchaser, and give the seller some cash (best case scenario). Fixing the current system will benefit society and those that follow in our footsteps.  I am on society's side.  To me, this conversation is like Nero discussing buying a new fire truck as Rome blazes around him.

Right on, Anna. :clap; Loved reading this.

I don't have any scholarship to add, either. Honest, MM, I am not an expert on this topic. I was interested in it once for a PhD, but decided I could not emotionally distance myself from the topic. Maybe in time.

Dialysis is not a treatment plan.  It is a sordid affront to human dignity.

 :rofl; Infectious, innit?

It certainly felt that way when I was on it the first time. The second time, I had so much perspective, so much I wanted to know. The nephrologists were sort of jerks but the techs, once I got over the cold reception I felt I was receiving, really opened up and I got a sense of their humanity. (Perhaps they were nurses, I do not know.) There was the nephrologist who came over and introduced herself and shook my hand. These simple moments resonate with me and I want to burst into my best Blanche Du Bois and tell them that I recognize their kindness.

There are people who would disagree vehemently with you. People on this site. Try it first, MM. I mean, I could say the same for chemo, or radiation, but we would both be saying the same thing: Sickness is a sordid affront to human dignity. And so it is.

I am supposed to be watching Percy Jackson with the family right now, so I will have to leave this for now, but I hope to return and give a proper response.

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« Reply #18 on: September 24, 2010, 08:16:07 PM »

I have anger issues.   :rofl;  I am royally pissed off that all of the wonderful people that I've come to care about on IHD have ever had to deal with all of this renal crapola.  Believe it or not, it's not all about me.  I've fallen into this foul mindset where anytime I hear about someone having some awful medical malady (and there seems to be a lot of this going around lately.  I guess I'm at that age where a lot of my contemporaries are being felled by all sorts of frightening physical woes), it just makes me mad.  But I don't say anything, and it builds and builds and builds and then I explode somewhere on this forum.  Perhaps I should be more self-conscious, but I can't fake grace.  So I thank all of you for being gentle with me today.  Y'all are so kind.

hemodoc, I agree with absolutely everything you've said.  I know this is going to sound really horribly cheesy and probably completely false, but one reason I have decided to dialyze at home when the time comes is because I do agree that this would free up in-clinic resources for those patients who cannot.  If I am healthy enough to do it, then I feel I should.  That's NOT to say that everyone else should do the same.  I would understand entirely if in-clinic is someone's choice even if they are otherwise able to dialyze at home.  I would never judge someone's choice in this matter.

I agree that America can do much better, but do you think we WILL?  You always seem to be able to provide an optimistic outlook, and I am grateful for that.

What do you mean when you say that altruistic donation is being lambasted in the popular press?  Could you explain further?

I've learned I should do more research on certain people before blathering my opinion.  I didn't realize that Dr. Satel was so loathed. I apologize if I offended anyone.  It truly was not my intention to disregard anyone's suffering...far from it.  Death is one thing...we all die.  But suffering...well, it's the suffering that makes me angry.  I wish I could be a better person and claim that my life has been enriched by suffering, but I'd be lying, and I won't do that.  There are two things in this world that make me truly angry...bullying and suffering. 

Meinuk, you ask a lot of pertinent questions to which I'd love to hear the answers, but I am skeptical.  Usually when a solution just makes sense, it gets lost somewhere along the way.  And there is nothing wrong with making this personal.  It really doesn't get much more personal than this.
« Last Edit: September 24, 2010, 08:26:37 PM by MooseMom » Logged

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« Reply #19 on: September 24, 2010, 08:37:36 PM »

Dear Moosemom, I should say that some are lambasting altruistic donation, specific Sally Satel and many in the popular press pick up her quotes and add to them.  Altruistic donation has saved the lives of thousands of people and should be applauded.

The reason that i am optimistic is that the tide is turning as far as acceptance of optimal dialysis as the standard of care.  It is coming slowly but it is becoming the consensus.  Time and frequency are the two biggest factors.  People getting only 3 hours of dialysis 3 X a week are getting the short end of the stick.  It is just not enough dialysis period.   The common side effects are actually mostly iatrogenic, or caused by the treatment.  However, longer and slower dialysis eliminates almost all of these so called usual side effects.  It is time to reduce complications with more effective dialysis.  The best place to do that is in the comfort of the patients home.
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Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #20 on: September 24, 2010, 08:43:24 PM »

Dear Moosemom, I should say that some are lambasting altruistic donation, specific Sally Satel and many in the popular press pick up her quotes and add to them.  Altruistic donation has saved the lives of thousands of people and should be applauded.

Why in the world would anyone NOT applaud altruistic donation.  What does Sally Satel have against it?  What are her arguments?

Quote
The reason that i am optimistic is that the tide is turning as far as acceptance of optimal dialysis as the standard of care.  It is coming slowly but it is becoming the consensus.  Time and frequency are the two biggest factors.  People getting only 3 hours of dialysis 3 X a week are getting the short end of the stick.  It is just not enough dialysis period.   The common side effects are actually mostly iatrogenic, or caused by the treatment.  However, longer and slower dialysis eliminates almost all of these so called usual side effects.  It is time to reduce complications with more effective dialysis.  The best place to do that is in the comfort of the patients home.
Do you think that there uis a reasonable chance that in due time, longer, slowwer and more frequent dialysis will ever be available in-clinic in the US?
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« Reply #21 on: September 24, 2010, 11:25:47 PM »

Dear Moosemom, I should say that some are lambasting altruistic donation, specific Sally Satel and many in the popular press pick up her quotes and add to them.  Altruistic donation has saved the lives of thousands of people and should be applauded.

Why in the world would anyone NOT applaud altruistic donation.  What does Sally Satel have against it?  What are her arguments?

Quote
The reason that i am optimistic is that the tide is turning as far as acceptance of optimal dialysis as the standard of care.  It is coming slowly but it is becoming the consensus.  Time and frequency are the two biggest factors.  People getting only 3 hours of dialysis 3 X a week are getting the short end of the stick.  It is just not enough dialysis period.   The common side effects are actually mostly iatrogenic, or caused by the treatment.  However, longer and slower dialysis eliminates almost all of these so called usual side effects.  It is time to reduce complications with more effective dialysis.  The best place to do that is in the comfort of the patients home.
Do you think that there uis a reasonable chance that in due time, longer, slowwer and more frequent dialysis will ever be available in-clinic in the US?

She wrote a book called When Altruism Isn't Enough followed by an essay called When Altruism Isn't Moral.  Bill, Anna and I have written literally dozens of posts based on her writings voicing our opposition to her views.  The irony is that her renal transplant came from an acquaintance, not a close friend so she really is the poster child of Altruism.  If you read her writing, my impression is she wishes she could have just paid for a kidney to avoid what she calls the "tyranny of the gift."  She is a psychiatrist by trade so she may be sitting in the ivory towers thinking about issues so much she has lost sight of what is really going on.  It is a very bizarre response in my opinion to an ultimate sacrifice from a person who was essentially a stranger to her.  Go figure.

http://www.sallysatelmd.com/html/aeibookflyer.pdf

As far as the issue of optimal dialysis, take a look at the key note speaker and his topic at the upcoming Annual Dialysis Conference in Phoenix next February:

Annual Dialysis Conference
Program


Sunday, February 20, 2011

General Session
9:00 -10:00am

9:00
Welcome -
9:10       
Keynote Address: - Shorter Dialysis Times Are Associated with Higher Mortality among Incident HD Patients - Glenn Chertow, MD

http://som.missouri.edu/Dialysis/sunpro-am.shtml

Dr. Chertow has not been an advocate of longer dialysis and DSEN has written several posts disagreeing with his point of view on the issue.  He has not believed that we should fund extra dialysis sessions as a routine except for medical necessity which is  allowed by Medicare already.

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/12/the-value-of-life-a-new-threat-to-patients-on-dialysis--anna-andbillcommented-on-the-british-health-care-systems-j.html

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/11/why-do-we-need-high-dose-dialysis-gatekeepers.html

http://www.billpeckham.com/from_the_sharp_end_of_the/2008/11/nocturnal-dialysis-studies-questioning-the-investigator.html

I was most surprised by the key note address and sent an email to one of the people that is an insider with the dialysis crowd and she didn't know about it but it is quite  surprise to me.  I am hopeful that this represents a positive outcome in the soon to be released results of the Frequent Hemodialysis Network study.  Perhaps I am being too optimistic too soon, but it is a signal I believe that we will have to watch for.  Hopefully we will have the published results of those trials in the next couple of months.

If it is a positive result in favor of more frequent hemodialysis then Medicare really can have no further objections to implementing optimal dialysis.  If that happens it is over 40 years late in coming since people like Dr. Scribner have fought for this since the pioneering days of dialysis.  Once again, I may be reading a lot into the title and person speaking but hopefully it is what they are signaling with this lecture.  We should know soon.

« Last Edit: September 24, 2010, 11:34:59 PM by Hemodoc » Logged

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

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #22 on: September 24, 2010, 11:33:47 PM »

Oops, hit the wrong button.
« Last Edit: September 24, 2010, 11:37:07 PM by Hemodoc » Logged

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

All clinical and treatment related issues discussed on this forum are for informational purposes only.  You must always secure your own medical teams approval for all treatment options before applying any discussions on this site to your own circumstances.
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« Reply #23 on: September 25, 2010, 02:10:03 AM »

Here Hemodoc, you might be able to use this for something.   [off topic]

In an analysis of 4 groups by weekly dialysis time, 5-year survival continuously increased from 45 ± 8% in those dialyzing <12 hours to 100% in those dialyzing >15 hours without any apparent threshold.  [...] 4 factors were independently associated with survival: age in years [...] weekly dialysis hours, and secondary renal disease [...] Unlike conventional HD, no pattern of excessive death occurred early in the week during SDHD [short-daily hemodialysis]. With SDHD, longer time and dialysis at home were independently associated with improved survival, while Kt/V was not. Homedialysis and dialysis 15+ h/wk appear to maximize survival in SDHD

KJELLSTRAND, C., BUONCRISTIANI, U., TING, G., TRAEGER, J., PICCOLI, G. B., SIBAI-GALLAND, R., YOUNG, B. A. and BLAGG, C. R. , 2010 Survival with short-daily hemodialysis: Association of time, site, and dose of dialysis. Hemodialysis International, doi: 10.1111/j.1542-4758.2010.00475.x

Abstract

In thrice-weekly hemodialysis, survival correlates with the length of time (t) of each dialysis and the dose (Kt/V), and deaths occur most frequently on Mondays and Tuesdays. We studied the influence of t and Kt/V on survival in 262 patients on short-daily hemodialysis (SDHD) and also noted death rate by weekday. Contingency tables, Kaplan-Meier analysis, regression analysis, and stepwise Cox proportional hazard analysis were used to study the associations of clinical variables with survival. Patients had been on SDHD for a mean of 2.1 (range 0.1–11) years. Mean dialysis time was 12.9 ± 2.3 h/wk and mean weekly stdKt/V was 2.7 ± 0.5. Fifty-two of the patients died (20%) and 8-year survival was 54 ± 5%. In an analysis of 4 groups by weekly dialysis time, 5-year survival continuously increased from 45 ± 8% in those dialyzing <12 hours to 100% in those dialyzing >15 hours without any apparent threshold. There was no association between Kt/V and survival. In Cox proportional hazard analysis, 4 factors were independently associated with survival: age in years Hazard Ratio (HR)=1.05, weekly dialysis hours HR=0.84, home dialysis HR=0.50, and secondary renal disease HR=2.30. Unlike conventional HD, no pattern of excessive death occurred early in the week during SDHD. With SDHD, longer time and dialysis at home were independently associated with improved survival, while Kt/V was not. Homedialysis and dialysis 15+ h/wk appear to maximize survival in SDHD.


http://onlinelibrary.wiley.com/doi/10.1111/j.1542-4758.2010.00475.x/abstract



And this: 

MURASHIMA, M., KUMAR, D., DOYLE, A. M. and GLICKMAN, J. D. (2010), Comparison of intradialytic blood pressure variability between conventional thrice-weekly hemodialysis and short daily hemodialysis. Hemodialysis International, 14(3), pp.270–277. doi: 10.1111/j.1542-4758.2010.00438.x

In this retrospective study, SDHD was associated with less intradialytic BP variability and with fewer episodes of hypotension during treatments. Further studies are necessary to generalize these findings.
« Last Edit: September 25, 2010, 02:29:39 AM by natnnnat » Logged

Natalya – Sydney, Australia
wife of Gregory, who is the kidney patient: 
1986: kidney failure at 19 years old, cause unknown
PD for a year, in-centre haemo for 4 years
Transplant 1 lasted 21 years (Lucy: 1991 - 2012), failed due to Transplant glomerulopathy
5 weeks Haemo 2012
Transplant 2 (Maggie) installed Feb 13, 2013, returned to work June 17, 2013 average crea was 130, now is 140.
Infections in June / July, hospital 1-4 Aug for infections.

Over the years:  skin cancer; thyroidectomy, pneumonia; CMV; BK; 14 surgeries
Generally glossy and happy.

2009 - 2013 PhD research student : How people make sense of renal failure in online discussion boards
Submitted February 2013 :: Graduated Sep 2013.   http://godbold.name/experiencingdialysis/
Heartfelt thanks to IHD, KK and ADB for your generosity and support.
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« Reply #24 on: September 25, 2010, 09:36:58 AM »

Here Hemodoc, you might be able to use this for something.   [off topic]

In an analysis of 4 groups by weekly dialysis time, 5-year survival continuously increased from 45 ± 8% in those dialyzing <12 hours to 100% in those dialyzing >15 hours without any apparent threshold.  [...] 4 factors were independently associated with survival: age in years [...] weekly dialysis hours, and secondary renal disease [...] Unlike conventional HD, no pattern of excessive death occurred early in the week during SDHD [short-daily hemodialysis]. With SDHD, longer time and dialysis at home were independently associated with improved survival, while Kt/V was not. Homedialysis and dialysis 15+ h/wk appear to maximize survival in SDHD

KJELLSTRAND, C., BUONCRISTIANI, U., TING, G., TRAEGER, J., PICCOLI, G. B., SIBAI-GALLAND, R., YOUNG, B. A. and BLAGG, C. R. , 2010 Survival with short-daily hemodialysis: Association of time, site, and dose of dialysis. Hemodialysis International, doi: 10.1111/j.1542-4758.2010.00475.x

Abstract

In thrice-weekly hemodialysis, survival correlates with the length of time (t) of each dialysis and the dose (Kt/V), and deaths occur most frequently on Mondays and Tuesdays. We studied the influence of t and Kt/V on survival in 262 patients on short-daily hemodialysis (SDHD) and also noted death rate by weekday. Contingency tables, Kaplan-Meier analysis, regression analysis, and stepwise Cox proportional hazard analysis were used to study the associations of clinical variables with survival. Patients had been on SDHD for a mean of 2.1 (range 0.1–11) years. Mean dialysis time was 12.9 ± 2.3 h/wk and mean weekly stdKt/V was 2.7 ± 0.5. Fifty-two of the patients died (20%) and 8-year survival was 54 ± 5%. In an analysis of 4 groups by weekly dialysis time, 5-year survival continuously increased from 45 ± 8% in those dialyzing <12 hours to 100% in those dialyzing >15 hours without any apparent threshold. There was no association between Kt/V and survival. In Cox proportional hazard analysis, 4 factors were independently associated with survival: age in years Hazard Ratio (HR)=1.05, weekly dialysis hours HR=0.84, home dialysis HR=0.50, and secondary renal disease HR=2.30. Unlike conventional HD, no pattern of excessive death occurred early in the week during SDHD. With SDHD, longer time and dialysis at home were independently associated with improved survival, while Kt/V was not. Homedialysis and dialysis 15+ h/wk appear to maximize survival in SDHD.


http://onlinelibrary.wiley.com/doi/10.1111/j.1542-4758.2010.00475.x/abstract



And this: 

MURASHIMA, M., KUMAR, D., DOYLE, A. M. and GLICKMAN, J. D. (2010), Comparison of intradialytic blood pressure variability between conventional thrice-weekly hemodialysis and short daily hemodialysis. Hemodialysis International, 14(3), pp.270–277. doi: 10.1111/j.1542-4758.2010.00438.x

In this retrospective study, SDHD was associated with less intradialytic BP variability and with fewer episodes of hypotension during treatments. Further studies are necessary to generalize these findings.

Dear natnnat,  those are great articles.  Dr. Kjellstrand and Dr. Blagg had one incredible work for decades keeping the issue of daily/optimal dialysis before their colleagues for decades.  I noticed the first article a few days ago and wrote a short post on it.  I am hopeful that soon this will be the standard of care here in America as well.

God bless,

Peter

http://www.billpeckham.com/from_the_sharp_end_of_the/2010/09/vindication-for-the-hemodialysis-product.html?cid=6a00e54fc659eb88340133f4906feb970b#comment-6a00e54fc659eb88340133f4906feb970b
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Peter Laird, MD
www.hemodoc.info
Diagnosed with IgA nephropathy 1998
Incenter Dialysis starting 2-1-2007
Self Care in Center from 4-15-2008 to 6-2-2009
Started  Home Care with NxStage 6-2-2009 (Qb 370, FF 45%, 40L)

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