Bashing the National Kidney Foundation: The Sally Satel Spin

By Peter Laird, MD

In a truly remarkable assault on the NKF’s correct stance against payment for renal donation heralded in the renal news blogs as well as a highlighted article in the Wall Street Journal, I wondered what monumental event set off this prodigious barrage against the otherwise well respected and highly influential NKF organization.  The surprising answer is found in a solitary blog by Sally Satel, MD who is also a renal transplant recipient and an author with a book soon to be published on this issue who is now enjoying extensive publicity on this subject.

As an MD and a potential renal transplant candidate myself due to CKD-5 from IgA nephropathy, I do have a wife and a daughter who have both offered to give me the gift of one of their two healthy kidneys.  I thanked my daughter but told her that as she is now married and wishing to start her own family, she should keep both kidneys so that our future grandchildren could have the best possible chance of starting life well.

I have likewise thanked my wife for offering to donate one of her two healthy kidneys, but with her borderline HTN and an elevated fasting glucose on two occasions it is my opinion that my wife will need both of her kidneys as she is in a high risk category for possibly developing CKD herself should weight loss, exercise and dietary refinement not head off diabetes and HTN. 

In the end, I concluded that my renal disease was my own personal responsibility to manage and my access to a six figure doctor’s income did not give me the right to place the responsibility for my personal health onto someone without a six figure income simply trying to feed their family whether here in America or overseas.  Since my wife is Filipino, I could easily have arranged an overseas transplant for much less than my average one month earnings. However, in contradistinction to Dr. Satel’s statement that she would have been willing to obtain a kidney whether she paid for it or not, I instead have concluded that I have a personal obligation to not cause any potential harm to another person to receive renal replacement treatments no matter how beneficial that may be to me.  It is my disease after all and not some poor peasant’s in Pakistan, India, the Philippines or even here in America.

Moreover, when I became aware of the alternative treatment option of daily dialysis which would not impact the health of any other person known or unknown to me, I felt a moral responsibility to truly put into practice the adage: “physician, heal thyself” and not look to another frail, mortal man to jeopardize their own life for mine. Daily dialysis gives me the same gift of life that a cadaveric renal transplant can give.  It is a treatment option that will be my responsibility to oversee and manage and It will not have any adverse health potential to any other person.

America developed one of the greatest gifts of life in the 1960's with hemodialysis after Scribner secured a stable blood access system.  America pioneered home dialysis with excellent results before federal funding took on the burden of renal disease.  America developed the arterial-venous fistula.  Yet today, we have the lowest rate of home hemodialysis of any developed nation and a pitiful rate of fistula usage.  Japan has the lowest mortality rate for CKD-5 patients coupled together with the lowest renal transplantation rate. Even if Dr. Satel and others that support payment for renal donation win over the public mindset and Congress on this issue, I venture that at best they may double or even triple the number of renal transplantation surgeries here in America.  Given even a most optimistic 400% increase in renal donation rates, that will only offer 10-15% of current CKD-5 patients the option of renal transplantation.  And if such a system could be ethically implemented, I would applaud their success but challenge all of my colleagues to not forget about all of the rest of us renal patients that either do not have access to renal transplantation or choose alternative treatments.

Yet, for the remaining 90% of American CKD-5 patients who suffer the effects of suboptimal dialysis, I ask my colleagues what they shall do for these patients such as myself?  Will your proposed system for renal transplantation supply 4-5 million willing donors for all of the American people that will need renal replacement therapies in the next decade?  If we simply implemented an effective home daily dialysis program, over 100,000 patients a year could benefit immediately from this treatment option as do patients in Japan, Europe, Australia and New Zealand already. 

I am greatly saddened that my medical colleagues here in America have ignored the best practice evidences of other nations that have been available and proven for decades and instead promote the renal transplantation treatment option to the exclusion of optimal dialysis yet not acknowledging that this strategy will still only provide optimal renal replacement therapies for a small portion of the 380,000 patients who suffer from severe renal impairment.

When American medicine simply climbs to the same level as the rest of the developed nations in providing optimal dialysis, the current renal transplant lists will fall much more dramatically than any payment for renal donation program ever could provide. 

Sally Satel, my colleague, my fellow survivor of renal disease, I call upon you and your colleagues to open the dialogue for optimal dialysis here in America first before falling to place selfish burdens upon any person who would be motivated by financial incentives to “give” you or me of his own flesh, blood and organs.

I applaud the National Kidney Foundation’s courage to stand forth for ethical behavior and moral fortitude in the coming days of a full fledged frontal attack against turning man’s flesh and blood and organs into cheap commodities for sale.  I urge the NKF to continue as a leader in the ethical and compassionate care of renal patients that they already are.  I call upon all of my colleagues whether for or against payment for organ donation to overcome the mediocre treatment offered here in America and implement cost saving and life saving optimal dialysis.

Comments

[Mark E. Neumann]

Peter: very nicely said. I agree that the NKF went against the tide when taking their stance on financial incentives for organ donation, even when major transplant societies voted in favor of it. Talking with members of the NKF -- not just the administration -- they agree with the position as well.

It is a controversial topic, and all sides should be heard and accepted. At the minimum, as you note, all other medical options to treat kidney disease -- and we need to repeat often that transplant is not a cure, but a treatment -- should be offered to patients, including the home dialysis therapies.

[Anonymous]

I think either I misread something or two different issues have been conflated. Dr. Satel is in favor of purchase of kidneys from living donors which I oppose along with all of you and the NKF, but I thought this particular story was about financial incentives for families of deceased donors to donate their family member's organs such as financial help with burial expenses as has been proposed in the past and which the NKF opposed also. I see these as very different and while very opposed to the first I am not opposed to the second. Am I confused?

[Zoran Lazarevic]

Dear Dr. Laird,

A poor father wants to sell his kidney in order to pay for an expensive surgery for his child. Banning this transaction hurts the child, the father, and the potential kidney recepient.
A farmer in a third world country wants to sell his kidney to prevent starvation of his family due to a famine. Banning this transaction hurts him, his family members who will not survive this year, and the potential kidney recepient.
It is safe to assume that all the potential paid donors would be in such a grave need, because otherwise they would not contemplate selling their organ.

You are a doctor. For 12+ hours a week you are sitting in a chair instead of treating patients. How many lives could you have saved or improved were you to receive a transplant? Are we as a society better off or worse off because fewer of us get your services?

Two consenting adults, with a full knowledge of risks and benefits, should not be prevented from trading an organ for cash. Economists have calculated that the price of a kidney on a free market in the U.S. would be $30,000. That is a small price to pay for dialyzors I talked to. It was heartbreaking to hear from them how bad they wanted a transplant. If the number of dialyzors was halved, that would free up a lot of money and clinic's time to provide better, longer, more frequent treatments to the other half of patients who cannot receive a transplant, or decide to stay on dialysis like you.

It seems you would not mind even if voluntary donations were outlawed (such as your wife's noble offer) because people do not have "the right to place the responsibility for [their] personal health onto someone without a six figure income".

From your posts, I understand that you oppose the legalization because the poor people cannot make decisions by themselves, do not know what is good for them, cannot judge risks and benefits, and thus the system would exploit them.

I would urge you to reconsider your moral reasons for the ban in light of moral reasons for honoring the paid donor's wishes and the benefits to the whole CKD population.

[Bill Peckham]

Zoran writes:

It is safe to assume that all the potential paid donors would be in such a grave need, because otherwise they would not contemplate selling their organ.

Zoran I don't think you have been paying attention to today's world.

A poor father wants to sell his kidney in order to invest in ostrich farming because it will be a great investment (it can't miss). A dad with seven kids wants to sell his kidney to enter the World Series of Poker (he's already won the online version he bound to win in Vegas). An 18 year old waitress wants to sell her kidney because with the money she can get plastic surgery and take Hollywood by storm (with just a bit of work she's sure to be the next Julia Roberts).

The article Sally Satel and Nadey Hakim wrote for the International Herald Tribune last June, 'What's wrong with selling kidneys?' acknowledges the problem with buying a kidney is that you will not like what the people will do with the money. As I wrote:

... ([the authors are] acknowledging that this pay for a kidney system might not feel good in practice - that in practice they would not approve of the decisions people are making. The thing about altruistic donation is that we (society) approve of the decision. Are we ready to support donation when we think the donor has made the wrong choice?

I think you are acknowledging the problem as well Zoran by imagining people would only sell their kidney for reasons you approve.

Zoran you wrote:

From your posts, I understand that you oppose the legalization because the poor people cannot make decisions by themselves, do not know what is good for them, cannot judge risks and benefits, and thus the system would exploit them.

I think if you read all of Peter's posts - or really any one - it is clear that Peter supports kidney transplant, has joyfully referred his own patients for transplant and if it was not contra indicated in his own case he would choose to be listed for a cadiveric transplant. Peter's position, and mine, is that the problem is not dialysis, the problem is chronic under dialysis that is routinely provided in dialysis units all across the United States.

As far as the specific issue of creating an organ market, both Peter and I have brought up numerous specific problems with going down that road.

[rohana]

I agree with what you wrote about home dialysis being made available to American renal patients, as it is in other countries. It is far easier on the patients, costs less, is less profitable to healthcare providers, which probably is why it is not popular here. One problem is that home dialysis patients cannot be single and living alone. A great many single people do live alone, particularly among baby boomers.

I agree with Dr. Satel that incentives should be offered for the gift of life, whether to families of cadaver donors or to living donors.

There is a group of patients you neglected to discuss. Those of us who have kidney failure from long ago chemo damage and whose chemo-destroyed veins do not allow dialysis. Transplant is my only chance for life. I am currently at 21 GFR. I had cisplatin 27 yrs ago. Most patients who had it in the aggressive dosage I received along with other chemo agents, subsequently died from kidney failure, if not from their cancer. I was considered a miracle cancer recovery case. Now my renal team tells me I am also a kidney miracle to have lived this long after the chemo I was given! I took megavitamin supplements, including selenium and E and C - which new research has shown can help kidneys survive metal-based chemo damage. So, perhaps I accidentally saved my kidneys from failing years sooner.

I cannot have peritoneal dialysis due to radiation therapy of my entire trunk and an omentectomy. Three recent surgeries for AV Fistulas and AV Fistula Grafts to prepare me for upcoming dialysis have failed - my veins fell apart under the surgeons hands. He was shocked at how bad they were. Because I am not on dialysis, my name stays at the bottom of the transplant list, even though I cannot get dialysis except in a major emergency through a chest port temporarily. I am currently being put on the transplant list, but it is likely my kidneys will fail before a kidney shows up for me, even though I am blood type AB and an excellent, proactive, educated and strong transplant candidate.

There are far more exceptions and special considerations and renal care in this country needs to provide the best options for every individual.