Guest View: Allowing informed donors to sell organs

[okarol]

Guest View: Allowing informed donors to sell organs

By Sally Satel and Mark J. Perry
Posted: 03/18/2010 07:44:34 AM PDT

MARCH is National Kidney Month - a good time to trumpet the bad news about the growing organ shortage.

Today, 83,000 people wait for a new kidney, a record high. Perhaps one in five will actually receive one this year.

Despite decades of urging people to sign donor cards and donate to loved ones, 12 people die daily, unable to survive a five or more years' wait for a kidney.

No wonder desperate people on the waiting list advertise on billboards and on the Internet (ineedakidney.com). Some even travel abroad to get a kidney on the black market. Awful? Yes, but you cannot blame sick people for trying to save their own lives.

We can save many of those lives by doing the responsible thing: increasing the supply of organs by rewarding healthy, well-informed donors.

Unfortunately, U.S. law deems pure altruism the sole legitimate motive for donating organs. Someone who accepts any material reward for sparing his fellow human being years of life-draining dialysis and premature death is - believe it or not - committing a felony.

Of course, brokers who traffic in kidneys and exploit illiterate and impoverished people should be thrown in jail, but we are not suggesting a free-for-all marketplace. What we propose is for Congress to allow donors to accept a carefully devised and regulated benefit, perhaps a tax credit, a contribution to a retirement plan, or early access to Medicare.
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The answer is a well-designed plan that prevents donor exploitation. Providing in-kind rewards were offered to donors, such as a contribution to a retirement fund, an income tax credit, lifetime medical care - rather than lump-sum cash payments - would not attract desperate people who might otherwise rush to give a kidney for instant cash.

The cost savings would be impressive. Dialysis costs about $72,000 per year whereas the anti-rejection medication that kidney recipients need costs between $12,000 and $15,000 annually.

We emphasize rewarding living donors to solve the kidney shortage because even if everyone signed his or her organ card - and we surely hope they do - it would not close the growing gap between supply and demand. The reason is that not enough people die in a manner that allows their organs to be transplanted. Another major benefit of a safe and regulated incentive system is that it will help put black markets out of business.

Altruism is a beautiful virtue, but insisting that it remain the only legal way to donate an organ is exacting a deadly price. We must also compensate people who are willing to relinquish a life-saving kidney - so their act can encourage others to do the same.

Sally Satel is a resident scholar at the American Enterprise Institute. Mark Perry is a professor of economics at the University of Michigan.




Read more: http://www.sgvtribune.com/opinions/ci_14697356#ixzz0iXlzCheh

[paul.karen]

I say let people sell there organs if they are of sound mind and choose to do so.  it will be a two fold win.  many will say that this will only help the rich who can afford to buy body parts.  Which it would help them but also it would free up body parts/organs that may go to them to someone who couldn't afford to purchase one.

I mean who's body is it??  If i want to sell sally a kidney from MY BODY does the government truly have the right to tell me i cant.  Sadly they do.  Less they were in need of an organ then things may be different.

[Sunny]

If we're going to sell organs, then there must be an equalizing aspect to it. Otherwise only the rich will be able to afford it. Middle class people will be taking out seconds on their houses, selling retirement accounts intended for old age,or charging up the credit cards. Poor people will be left out completely. Maybe then can take out a loan at 25% interest with a 10 year payment plan? Then like that new movie that's out "Repoman", if they fail to pay, the collectors will take it back. It would be best if the government simply agreed to set aside a given amount of money agreed upon in advance. Then donors willing to do this would get placed in a pool and get matched to people waiting on the list. Nobody jumps ahead; no class favoritism, everbody treated equally. All you have to do is match.

[okarol]

I believe the idea is that Medicare or private insurance would pay a flat rate and the donor and recipient would not interact regarding the payment. The patient would be responsible for any co-payment, just as they would for hospital or doctor fees.

[Rerun]

Get the RICH off the list.  Let them buy organs and help the poor donor.  They still have to pass ALL the tests to be a donor.  No sick person is going to get rich by selling a bad kidney.

Let's Accept $Change$ !!!!             

[Jie]

We should not have rich and poor arguments. The goal is to save life and reduce waiting time. More rich patients buy kidneys, less patients on the waiting list, so that the poor will benefit from it. Medicare should not spend this money. A lot of patients can afford buying a kidney. Eventually, a middle class will decide to wait for deceased donors or buying one, and the waiting time and the price of buying a kidney will reach a balance. Hopefully, we can see that day.   

[Bill Peckham]

I think it is inappropriate to have this discussion in a vacuum. Kidneys are not the only organs people need. This discussion should happen in the context of post mortem donation of organs. Ask people, as I have, how payment for organs would effect their decision to be an organ donor at death - the people I've talked to say it turns something that feels good into something seamy.

Ask people who are willing to be undirected donors of kidneys how payment would effect them - the two I have asked both would not go forward if the framework of altruistic donation changed. Ask Jenna's donor - I'm curious.

The stakes are far too high to simply do this with good intentions and hope it works out to improve the situation. People who need livers, or hearts, or lungs should be given more consideration than we who could use a kidney.

Finally, a kidney transplant is a cure for conventional dialysis. The entire argument is comparing the advantage of treating CKD with a transplant as opposed to conventional dialysis. Fine. But if you are going to base this argument on the inadequacy of conventional dialysis then you should evaluate all the alternatives to conventional dialysis together. The same people who are good canidates for a transplant are good candidates for intensive dialysis.

[okarol]

Good points Bill, you should write to the journalists who wrote the article.

[paul.karen]

Your opinion is noted Bill.
You make a good case,  kidney patients can live a long time on dialysis.

I wonder how many loved ones die every year due to lack of organs?  Kidney and other..

[okarol]

The statistic that often is stated says "Each day, about 77 people get the organ transplant that gives them a second chance, but 17 to 19 others die because they did not receive an organ transplant" and this includes all organs (from http://www.organdonor.gov/get_involved/donatelifemonth.htm ). Over 106,000 people are currently waitlisted for an organ transplant, of those 84,077 are waiting for kidneys. (from http://optn.transplant.hrsa.gov/data/).

[Meinuk]

Ok, I'll bite.  It is pretty obvious that I have a problem with Sally Satel and her POV.  At first I thought that she was using social satire to make the valid point that we have a shortage of altruistic donors, but then I realized that she is just the Marie Antoinette of the CKD5 world. "Let them buy kidneys".

Ms. Satel is advocating for her peers, those people who can afford to rent a billboard, the people who can afford the $500.00 fee for matching donors.com, the people who can afford to fly to a foreign country to buy a black market organ.  Why can't they just buy a kidney at home? Then it would be like, easier and less of a hassle.  Sure, let's throw money at people and get them to give up their organs, we have a spare kidney anyway.  I actually have two spare kidneys, and if you want to buy my super-sized PKD kidneys, I'll give you two for one.  So what if they are slightly broken, they have been lovingly cared for for 43 years.

Let's look at numbers.  According to MEDPAC's June 2009 Data Book (link below), in 2006 there were (in THOUSANDS):

People in ESRD                      506.3

People on Dialysis                   354.8

People with Functioning Tx     151.5   (This is an aggregate number of all working tx not just for those transplanted in `06)

People waiting for TX`06          52.0 (ACTIVE ON LIST)
                                             20.0 (INACTIVE on list)* This data is from UNOS Slides 2008  link is below)

So, using ratios from `06, and understanding that the population for all is growing, Ms. Satel is really advocating for 14% of us (and of that 14% how many are in Ms. Satel's economic strata?).  What a nice lady. That is great. Because using her attitude, we can save 14%, and everyone else can suffer and die, because if your don't qualify for or want a transplant, you get what you deserve (and can afford).  Substandard therapy with the majority provided by for profit providers who have slick marketing and shoddy policies and procedures. You don't need to write off 86% of a population to make your point.

Those 86%, who in 2006 would have been me, my friend Susie, Bill Peckham... you got it, pretty much pick a name here on IHD - every time you say "suffer and die" without a kidney, you are saying "too bad you 86%".  Susie did suffer and die, but she didn't take it laying down.  CKD took her by surprise, he health failed, and the only proactive thing that she could do about it was switch to PD when she could no longer tolerate 3x a week in-center hemo, that was the best advocating she could do for herself, and she shared her story here on IHD (read Goofynina's posts and you'll see what a strong advocate she was), and she was advocating for all of us, she cheered on our transitions to home dialysis, she promoted PD, and she cheered our transplants.  She didn't write off the 86% to suffer and die.

Bill Peckham took it a step further, he went public with his advocacy www.billpeckham.com and demands more dialysis and a healthier life for EVEYRONE.  He too cheers on transplants for the lucky few that get one.  But he also reminds us that the 86% need not "suffer and die without a transplant", we can live healthier lives, can be active, can travel, and better therapies are out there.  But to Sally Satel, who needs to make her point at any cost, the 14% are the only ones worth saving.

So yeah, Sally, put your time and energy into creating a class system for those who have CKD, because an organ market won't be classless (only a blind idealist would think that way - have you seen the state of today's Health Care System and Economy?).  Do you really think that if you are poor, you'll be able to afford one of these paid kidneys?  No, you'll end up on the UNOS list like me.  All the premium kidneys will have been sold to Sally and her kind, and those loving, giving people who have signed their donor cards will let us have their kidneys, and the world will go on.

I really don't have any answers, I got lucky, I am now one of the 14%.  My donor was a 32 year old man who died, his gift was uncompensated financially.  But I thank him every day for his gift, and hopefully his family knows that in his death, part of him lives on with me, he is still contributing to society, and he is even allowing me to have the chance to yell at Sally Satel, the Marie Antoinette of the CKD world. 

Oh, and Sally, I don't know where you are buying your TX drugs, but 15K a year is great.  Last year, my pharmacy bill was $42,000.00.  Where are you getting your Valcyte? Can you hook a girl up?


* http://www.unos.org/SharedContentDocuments/Spring_2008_Regional_Meeting_Data_Slides_Final.pdf    

MEDPAC  http://www.medpac.gov/documents/Jun09DataBookEntireReport.pdf 

[Jie]

I really do not understand what points you want to make here, Meinuk. Is it true that if I cannot get a good kidney, no one else should get one? I cannot understand where the 14% comes from. If the 14% is the proportion of ESRD patients who are healthy enough for transplant, it does not mean all of them can afford a kidney. When we discuss transplant, what is the point to bring up the remaining 86% that are not suitable for transplant? I can understand the goal that Sally Satel is trying to reach is save life. What goal is for your approach? If the rich is allowed to buy a kidney under strict rules, the waiting time for the poor is reduced, so everyone, the rich or poor, is benefiting from it. In the real world, few things are strictly equal. If I cannot afford buying a kidney, I would still be very happy for any ESRD patients who can.   

[Meinuk]

Jie, I am all for transplant.  (I have one)

I have a history of opposition to Sally Satel's organ market proposition, she has been writing about it since her transplant.  I am against Sally Satel saying that if a person does not have a transplant they will suffer and die with no mention of alternatives (although she did soften it in this editorial - hey, she's learning).  She is using high drama to make her point, and thus miseducating the same people that we are lobbying for dialysis reform. Too often people on dialysis are simply written off.  It is this attitude that needs to be changed, and Sally Satel is adding fuel to the fire. I do have a longstanding beef with her and her elitist advocacy.  Which is why I editorialize so graphically.

The numbers are just that. 14% qualify, and of that 14% how many can afford an organ? Do you really think that the damage that she is doing to CKD5 population as a whole justifies helping such a small percentage?

And your proposing the trickle down economic theory, well, I have heard that before.  It didn't work in the `80's how can it really work today in the world of Transplant?  As it is now, a person has to be financially sound just to keep their transplant.  How will they pay for their meds?  Have we seen the stats recently about noncompliant rejection?  That is pretty staggering too.  There are a whole lot of transplant hurdles already out there.  An organ market won't erase them.  It'll just save a few people from a trip to Brazil, Pakistan or China.

I am against creating an organ market for many reasons, but my response was because, as we have seen in dialysis already, those with money are treated better than those without.  Just look at DaVita, and their preferential treatment of private patients.

I used the Marie Antoinette example because although it is just a legend, the phrase is commonly ascribed to her.  When told that the people were starving, and had no bread, her response was "let them eat cake". 

Currently, in the United States, people with CKD5 are facing multiple hurdles to get adequate care.  They are starving for good care.  Sally Satel's answer is "Let them buy kidneys"

And speaking of transplant meds, Walgreens in Washington State is no longer accepting new Medicaid patients.  So, if you have a transplant and have hit hard times, it's gonna be rough.  And this is just the beginning...

http://seattletimes.nwsource.com/html/localnews/2011367936_walgreens18m.html

[Jie]

Hi Meinuk,

I understand your points better now. What you are concerned does not conflict with what Sally proposed. The 86% you are referred to are basically very old folks or patients with cancers or other serious diseases like heart diseases. Improvement of dialysis will benefit them. For the 14%, I don't see your points that "It didn't work in the `80's how can it really work today in the world of Transplant?" Whether the 80s were good or bad depends on who are asking. It is a matter of politics.

Just do some simple math. If 100 patients are waiting for a kidney transplant, and now 30% of them buy a kidneys and get off the list. The waiting list changes from 100 to 70 patients. With the same amount of deceased kidney supply, you think that the waiting time is the same with 100 patients and 70 patients?  If some patients cannot afford the medicines after transplant, a lot of help are available. Letting the rich buy a kidney will save a lot money for the government too, which will have a better position to help the poor.

So, you are thinking more than 80,000 patients who are waiting for a kidney transplant are too small percentage to help? I think everyone has a life and needs help. Helping this 14% does not take the resource away from helping the 86%. In fact, helping this 14% frees up more resources to help the 86%. I am not concerned the rich or poor with what Sally proposed. What I am concerned is the way we can do it so that no one gets hurt.

As to the treatment DaVita give to medicare and private patients, I think everyone should be treated the same, but the payment system needs to change.  Right now, the private insurances get robbed and it is unfair to charge private insurances 3 or 4 times as much as medicare patients for the same service. Every time I saw my bills, I feel discomfort because I am using about $300 a day and am charged $1235. If one can justify this robbery, he or she can justify the preferential treatment.

[Meinuk]

Jie,

Thank you for voicing your side of the argument.  We are never going to agree.  But I respect your beliefs.

The precedent that I see is that the privatization of the dialysis industry has hurt dialysis as a treatment.  Privatizing Transplant by creating an organ market, in my belief, will allow transplant units to act like plastic surgeons.  They won't have to take the charity or government cases, as they will be paid by the private patients.  As it is now, more and more doctors are no longer accepting Medicare, and as of March 1, Medicare issued NO part B payments for 2 weeks. This Medicare money is how Nephrologists and transplant surgeons pay their bills.

With a private transplant market, there will be no incentive to lower the prices of immunosuppresive drugs.  As we see now in  Washington state, Walgreens is no longer accepting new medicaid patients as rx customers.

You were citing the trickledown economic theory of the `80's when you wrote about the rich freeing up kidneys for the poor, and THAT subject is even more polarizing than an organ market.  I am Keneysian in my economic thought, and I'll just leave it at that.

Jie, remember that after 30 months, all eligible people are Medicare Primary.  I was on private insurance for the 2 years that I was on dialysis, I never bit into the medicare fund, but I will be in July of this year, as paying $110 for Medicare is a lot better than the $444. a month that I am paying for COBRA.  We need a lot of reform for our existing medical climate. Adding a government administered organ market to the mix, do we have the tax dollars to pay for that as well?  Our government can't afford to pay Medicare payments to our suppliers now, so more dialysis units will have to tighten their belts tighter, and scrimp some more on the already bare bones 3x a week business model that is incenter dialysis.  That is what is happening to the 86%, TODAY.

It is my belief that the Transplant list is overinflated, and it is my belief that creating an organ market will simply make it easier for a few, and more difficulty for the most.  (Of that 14%, very few can afford to buy and maintain a transplant.)

I also believe that Medicare can barely handle the people with CKD5 as a total population.  Carving out the administrative costs to create an ethical organ market in our current economic climate would simply redirect funds from those who are needier - they are dying too, at an alarming rate - even faster than their peers in Europe, Japan and Australia.

I wish our economy and society could create an ethical way for this to be resolved, but in our current crisis, I see no feasibility.  And I see that Sally Satel is terrified of dialysis, and is using scare tactics to prove her point. And, as we all do, she uses extremes as an example. I agree, people are dying waiting for a transplant, but I also feel that the list is overinflated, with preventative listing at 20% GFR (as I did) more and more people are able to accumulate time on the list without being on dialysis, and new high dose home hemodialysis really can make you feel so much better than in center (as well as PD). There are also exciting inroads in transplant happening.  I just wish that we had as much excitement about dialysis.  Transplant is the prom queen of the CKD world.  But there can be only one Queen.  The rest are just dancing in the dark of a cold auditorium. 

Jie, it is a sad sad situation.  You and I will just never agree, and time will tell what happens, from your posts, I see your world as an altruistic ideal world, and I truly wish we lived in a world like that.  But I am a pragmatist verging on cynic, and I view Sally Satel as an elitist who is totally blind to the real world of CKD.

Let's just respectfully disagree, and I will go one trying to get better dialysis and better preventative medicine for everyone, and hopefully more will be spared what we have gone through.

Best,

Anna Bennett

[Meinuk]

Ok, this thread is old now, but I still rankle when I think of Sally Satel wanting to establish an organ market. I am not against more transplants.  I am against her scare tactics and her complete misunderstanding of the whole population of people living with CKD.

That being said, I also have a love/hate relationship with the NKF. They were there for me when I was a child, and I benefited GREATLY by their literature in understanding my disease, and what was happening to my mother.  (I remember bringing one of their children's pamphlets in to school for show and tell in the third grade)

That being said, I also want them to reform quite a bit.  To me, they have gotten a bit off message. I usually call them the National Transplant Foundation at meetings just to make my point. But I did fund raise for them (I owe them a walk across the Brooklyn Bridge) and I have hope that they will one day get behind high dose dialysis, and they will embrace CKD5 and LIFE with kidney disease using ALL OPTIONS.

In choosing the lesser of two evils, I wish Sally Satel could use her platform to embrace the NKF's  "End the wait". The NKF is more transplant centric than I would like, but they have a well balanced proposal for change FOR EVERYONE with regard to transplant and with no need for an organ market:

http://www.kidney.org/news/end_the_wait/article.cfm

NKF’s END THE WAIT! recommendations will eliminate barriers, institute best practices across the nation, improve the transplant system, cover the cost of donating an organ, reduce regional and ethnic disparities and increase living and deceased donation throughout the United States.

[okarol]

I have always been unhappy with the lack of support for kidney patients in general from the NKF. They are great at fundraising, but most of the money goes toward prevention. That's great and all, but there are tons of dialysis patients struggling to make ends meet financially, yet there are no programs for them (And THESE PATIENTS are the ones who are walking the NKF walks and bringing in funds!) They have the transplant games - ok - that's fine - but what about all the dialysis patients who are living productive and meaningful lives?? Well, there are no games for them.

Ok Meinuk, let's see the NKF come up with a PLAN rather than just a slogan.

[Meinuk]

Karol, like I said, I have a love/hate relationship with the NKF.  They do have a lot going on, but they seem to only promote transplant and preventative.  Last year, I decided that they were worth trying to rehabilitate.

Now, with the NKF celebrating their 60th year, if I were to use a CKD metaphor, they are in CKD3 and operating at 30-59%, I think they can be saved, and we can stave off total failure with some aggressive treatment.

They are woefully lacking when it comes to Dialysis:  http://www.kidney.org/atoz/atozTopic_Dialysis.cfm

But their KDOQI is a great resource.  http://www.kidney.org/professionals/KDOQI/

I am very impressed with their past efforts with preventative outreach as well.

They are off track and way too slick and transplant centric, which has put them out of touch with the CKD population.

I have never used their financial assistance program (nor do I know anyone who has) but I thought is was still funded and dispensing relief.  Their application is still on-line.  http://www.kidney.org/site/308/pdf/PatientAssistancePolicies%20rev1_10.pdf

I see what they are trying to do with the END THE WAIT program, I just wish they would do more for the general CKD population.  I decided to stay close and try to remind them of that at every chance I get.  I just can't write them off yet.  I am used to being abandoned, let down and rejected in my whole CKD battle, I want to work to keep one of the ones that were there for me around.  (I feel the same way about IHD)

NKF Fact # 237: To help improve the quality of care for people with kidney disease, the National Kidney Foundation (NKF) created a guideline to help doctors identify each level of kidney disease. The NKF divided kidney disease into five stages. When the doctor knows what stage of kidney disease a person has they can provide the best care, as each stage calls for different tests and treatments. (So, thanks to the NKF, I don't have ESRD, I am in CKD5 - it's not the end for me.)

Just thinking about that makes me realize that I am fighting to take the END out of "end stage renal disease" - I can thank the NKF for that too. (well, I'll give them partial credit for that - there may have been a Rockstar involved too...)

[okarol]

I haven't given up on them at all, I participate with their living donor listserve and I also post on their message forum (which, after some major technical difficulties, and losing all of their posts from years of patient participation, is up and running, although not too active anymore.)

But you're right, their kidney function could be SO MUCH better. 

The financial assistance mentioned only covers Missouri and part of Illinois, and I have been unable to find any other resource, but perhaps I am just missing it. I will ask them at NKF to see if there is a national program.


Keep me posted about your efforts - I'd love to help any way I can!

[Meinuk]

Back when I was really angry with them, I ran their financial reports. They weren't too out of the ballpark.  I think 40k in lobbying. Nothing that gave me any fuel that I remember (and I was looking for ammo) I'll morningstar them when I have time, and maybe we could start a thread on fixing the NKF.

For one thing, their website is TERRIBLE!

Also, their boards are ATROCIOUS! Really.  (I don't know anything about their listserve) I only started working with them again last year, and I am currently pretty overwhelmed with school and other priorities - but they are on my to-do list, and I'll go to more meetings.  (My tx clinic is very active - DUH! That was when I started calling them the "National Transplant Foundation".)