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Altruism Isn’t Working — Should We Be Able to Buy Organs?


Everyone makes money on organ transplants except the donor.  That’s right physicians, hospitals, clinics, Organ Procurement Organizations  (OPOs) and funeral homes all make money on organ donation.  The 258 solid organ transplant centers in the U.S. share the wealth of this multi-billion dollar industry but the organ donor gets nothing more than the satisfaction of having done a good thing.

There are 117,000 people waiting for transplants in the United States.  Only about 28,000 of the procedures are done here yearly and that fact has remained static for several years while the number of people on the list keeps increasing.  Last year there were about 6,000 living donations and over 7,000 patients died while waiting for their names to come up on the transplant list.  Those are very disturbing numbers.

What is more disturbing, even infuriating is the fact that while survey’s show overwhelming  American support for organ donation (over 90% of us think it’s a great idea) only about 40% of us ever get around to becoming donors.  That’s why people are dying.  It’s not that Americans don’t want to donate…it’s just that they don’t get around to it…there is no sense of urgency for them as there is for the patient who quietly waits for his or her call to come.

With only 40% donating organs it is obvious we should be trying something else,  Perhaps it is time to find a new way to encourage people to become donors now rather than continuing to kick the can down the road and allowing more people to die .  Guilt trips haven’t worked well and neither have appeals to the human sense of sacrifice and doing the right thing so that means we absolutely must try something else and that something is money.  Money talks, money works and money motivates.

Before I get into any suggestions on how to use money or where to get it let’s go back to my opening comments.  Everyone is making money on organ transplants except the patient.  Let’s look at just how much money is involved.

According to Transplant Living http://www.transplantliving.org/before-the-transplant/financing-a-transplant/the-costs/  These are the estimated  U.S. Average 2011 Billed Charges Per Transplant

Transplant

30 Days
Pre-
transplant

Organ

Procurement

Hospital
Transplant Admission

Physician
During Transplant

180 Days
Post-transplant
Admission

Immuno-
suppressants

 Total
Heart Only $47,200 $80,400 $634,300  $67,700 $137,800 $30,300 $997,700
Single Lung $10,300 $73,100 $302,900 $33,500 $117,700 $23,700 $561,200
Double Lung $21,400 $90,300 $458,500 $56,300 $142,600 $28,200 $797,300
Heart-Lung $56,800 $130,500 $777,700 $81,000 $169,100 $33,300 $1,148,400
Liver $25,400 $71,000 $316,900 $46,600 $93,900 $23,300 $577,100
Kidney $17,000 $67,200 $91,200 $18,500 $50,800 $18,200 $262,900
Pancreas $17,000 $65,000 $108,900 $17,800 $61,400 $19,300 $289,400
Intestine $55,100 $78,500 $787,900 $104,100 $146,600 $34,600 $1,206,800

*Most transplant programs have social workers and financial coordinators who can help you with the financial details of your transplant. Depending on the structure at your center, one or both will help you develop a strategy.  For a finely detailed analysis of the cost of transplants you’ll want to study this report from 2008 http://publications.milliman.com/research/health-rr/pdfs/2008-us-organ-tisse-RR4-1-08.pdf

Medical costs include:

  • insurance deductibles
  • insurance co-pays
  • pre-transplant evaluation and testing
  • surgery
  • fees for the recovery of the organ from the donor
  • follow-up care and testing
  • additional hospital stays for complications
  • fees for surgeons, physicians, radiologist, anesthesiologist and recurrent lab testing
  • anti-rejection and other drugs, which can easily exceed $2,500 per month
  • rehabilitation

Non-Medical Costs

Non-medical costs include:

  • food, lodging and long distance phone calls for you and your family
  • transportation, to and from your transplant center, before and after your transplant
  • plane travel to get to your transplant hospital quickly
  • child care
  • lost wages if your employer does not pay for the time you or a family member spends away from work
  • If your transplant center is not close to your home, lodging close to the center before and after your surgery. Some centers offer free or low-cost hospitality houses for you and your family.

The above data clearly establish that transplants are expensive and that a good many people and organizations are profiting from it and I have no objection to that.  People ought to be paid for their work.  At the same time, though, is it fair that donor’s and their families get nothing?  Is it fair that in many cases donors, especially living donors may have substantial out of pocket expenses that are not reimbursed?

Living donors actually face a disincentive because they may have to pay the bills for travel, meals, accommodations, lost income and other expenses, including medical costs if their own health is compromised because of the operations. They also take on at least some risk of future discrimination from employers or insurers.

The American Medical Association says that at the low end, the added expense of donating may be a few hundred dollars, but the range can rise to about $20,000.   The AMA points out that while Federal law strictly prohibits the selling of any organs, donors may be reimbursed legally for their expenses. Still, that hardly is a guarantee.

Not well known is the fact that low-income donors and recipients can get financial aid through the National Living Donor Assistance Center, which is federally funded. More affluent recipients also can choose to pay donors’ expenses directly. But most donors come from that great middle ground where they may have to experience a financial loss in order to donate an organ.  That is an extraordinary and unreasonable expectations and should be addressed.  Why should a donor have to pay a financial price for doing the right thing?

According to the American Medical Association (AMA) the ir House of Delegates voiced its support in June of 2012  for an important proposition: http://www.ama-assn.org/amednews/2012/08/13/edsa0813.htm

“Living donors should not have to fear negative financial consequences for giving the gift of life. The recommendations call on governments, state and federal, to help remove financial barriers to living donation. That includes provisions for mitigating out-of-pocket expenses, ensuring access to health insurance, and guaranteeing freedom from discrimination in employment and in obtaining life insurance.

One example noted in a report to delegates is the proposed federal “Share Your Spare Act,” which would provide a tax credit of up to $10,000 to cover donor expenses or lost wages. A number of states and the federal government already have enacted a patchwork of donor work leave provisions, mostly for government employees. There also are a number of state tax credit provisions for donors.

The Affordable Care Act and its prohibition against preexisting condition denials, upheld by the U.S. Supreme Court after the delegates’ vote, is expected largely to take care of concerns about donors’ future access to health insurance coverage starting in 2014. Necessary legal protections against discrimination in employment and in purchasing life insurance are still lacking.”

Deceased donors pay nothing for the organ recovery and transplant process but their families still have to foot the bill for the illness that caused them to die and for all expenses following the death including funerals.  Somehow it seems as though there should be some accommodation for donors.  More for Living donors who can actually experience considerable cost to both their financial and physical health but why not at least pay funeral expenses for the gift of life from deceased donors?

When the National Organ Transplant Act (NOTA) passed and was signed into law in 1984 it prohibited payments for organs but did not prohibit reimbursement of expenses.  It didn’t address that subject at all.  That would be a perfectly legal step to take and maybe, given the right explanation, the public would approve of a financial incentive to donate that would at least cover expenses including funerals.  Other incentives could  be contributions to retirement plans, college scholarships or paying some or all of the cost of health care for the surviving spouse or partner.

We should point out here that the organ in greatest demand is, of course, the kidney.  In the U.S. of the 117,000 people on the transplant list, about 90,000 of them are waiting for kidneys.   How do we get more kidneys?  One way is to pay for them which is strictly prohibited by the 1984 law that established the organ transplant industry.   Laws, though, can be changed and if the proper safeguards are in place paying for organs could work.   An example of a country where organs are legally bought and sold is Iran.   Yes, Iran.  Not often an example of anything good this system seems to be working for Iran as they have virtually eliminated their kidney shortage.

Iran is the only country where the selling and buying of kidneys is legal. As a result, there is no shortage of the organs.  Here’s how it works there. The system allows people to sell and buy kidneys under state-regulated surveillance.  Two charities facilitate the process by finding potential vendors and introducing them to the recipients, and are charged with checking the compatibility of a possible donation and ensuring a fair trade.  After the transplant, the vendor is compensated by both the government and the recipient.  Iranians are not allowed to donate kidneys to non-citizens.

Would that work here…there are pros and cons but there’s also a little bit of research on the subject.  In 2010 a survey of 409 Philadelphia, Pennsylvania commuters was published by the American Medical Association on how willing people would be to donate under 12 different scenarios.  The study found that many concerns about paying kidney donors may be overblown. Among other things, participants were asked how willing they would be to donate a kidney to family members or strangers for no pay, for $10,000, or $100,000.

“The study provides no evidence whatsoever that the poor would be exploited or wouldn’t make informed choices,” said Scott D. Halpern, MD, PhD, the study’s lead author and assistant professor of medicine and epidemiology in the division of pulmonary and critical care medicine at the University of Pennsylvania School of Medicine. “The central finding is that payments do not seem to influence the poor more than the rich. The influence of a $10,000 payment on people earning more than $100,000 a year is the same as a $10,000 payment is for people earning less than $20,000 a year.”

On the flip side of the “pay for organs” issue there are some very serious concerns.  Pakistan, for example, is rife with kidney for sale nightmares. According to a 2007 story in the Washington Post  http://www.washingtonpost.com/wp-dyn/content/article/2007/04/13/AR2007041302066.html  “About 40 percent of the people in some Pakistani villages are turning up with only one kidney. Charts presented at the meetings show that the number of “donations” from unrelated Pakistanis is skyrocketing. Two-thirds of the people receiving these organs are foreigners. Data from the Philippines show the same thing.”  And it is even worse today in 2013.

A number of arguments against selling organs get bandied about, but there are two which lie behind most of the others. The first involves the concern with how selling organs leads to the commodification of human bodies, and the second is the concern with the exploitation of the poor for the benefit of the rich. These are difficult arguments to explain and are not convincing to everyone, but they cut to the heart of what we want our society ultimately to be like.

The bottom line is that something must be done to meet the demand for organs. It is at least as unethical to let people die because of being afraid to change the system as it is to pay for organs from poor people.  You can learn more on this subject by checking out these links:

http://www.cnn.com/2012/07/03/health/allowed-sell-organs-time/index.html

http://www.npr.org/2008/05/21/90632108/should-we-legalize-the-market-for-human-organs

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

http://plato.stanford.edu/entries/organs-sale/

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show; it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

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UNOS CEO: Study Could Redefine “Medically Suitable” Donors


On August 11, I sent a letter to Walter Graham, CEO of the United Network for Organ Sharing (UNOS) asking what UNOS was doing or was going to do to increase the supply of organs. My letter noted that the number of transplants performed each year has plateaued at about 28,000 while the number of people on the list continues to grow.  Today there are 114,899 people waiting and so far this year there have been 11,469 transplants from 5,677 donors.   As you can see, the gap continues to widen.  With only four months left this year we may fall far short of the 28,000 number.

Below you will first find my letter to Mr. Graham, followed by his response.  You can decide if he responded to my concerns and most importantly, your concerns about how our national donation/transplantation system is managed.

August 11,2012

Walter Graham

Chief Executive Officer

United Network For Organ Sharing

Richmond, Virginia

Dear Mr. Graham:

You might remember me as a Minneapolis, Minnesota based communications consultant that worked with UNOS in the 90’s.  During that period I was diagnosed with dilated cardiomyopathy and subsequently had a heart transplant at the Mayo clinic in Jacksonville, Florida in August of 2007.

I am writing not as a former consultant but rather as a very grateful heart transplant recipient, founder of Facebook’s nearly 2500 member Organ Transplant Initiative (OTI), author of over 120 blogs on donation/transplantation issues (www.bobsnewheart.wordpress.com)  where we have 100,000 readers and writer/producer of three videos on organ donation. I am a very active advocate for organ donation and have been for many years.

I’ll get right to the point.  I have a growing concern about the Inability of the altruistic system to meet the demands for organ transplants and UNOS’ reluctance to make or even recommend significant changes to the system.

I am quite aware of all the ethical and other arguments forwarded by UNOS for rejecting changes that would include presumed consent and donor incentives/compensation among others.  I am puzzled as to how UNOS can find these suggestions unethical or unworkable but has made no statement about the ethics of allowing people to die due to the failure of the altruistic system to generate enough transplantable organs.  How can it be ethical to allow an inadequate system to prevail?

Having been on that list I have first-hand experience with the depression that accompanies it, knowing that the government contractor that is funded with my tax dollars is doing little beyond promoting altruism to significantly increase the number of available organs.  It is discouraging and depressing for those on the list to continually hear that every option other than altruism is either unethical or unworkable.

I am hoping that you can offer some hope that I can pass on to members and other interested parties that the gap not only is closing but will close and soon.  Please offer some explanation other than renewed efforts at increasing altruism of just what UNOS is doing and will do to help those who are languishing on an ever growing list of people who need transplants.  Please prove me wrong.  I would be most grateful to see clear, compelling evidence that the altruistic system can work and is working.

It is almost 30 years since the National Organ Transplant Act (NOTA) was implemented..  I think that is plenty of time to determine if a system works.  Unless you can prove otherwise, It seems clear that with 114,000 people listed and only about 28,000 transplants done every year despite intense and noble efforts at increasing donation rates, altruism alone cannot meet the demand – ever.  .

Please respond as soon as possible.  I plan to publish my letter to you and your response side by side.

Thank you for your consideration and time

Bob Aronson

Return letter from Walter Graham

Received on August 22, 2012

Dear Bob:

Thank you for your letter, and yes, we remember your valuable contributions to us as a consultant in the 1990s.  We are glad you continue to do well with your transplant and engage the public in this vital cause.

Your concern regarding the shortage between available donors and the needs of waiting candidates is widely shared.  Our ultimate goal and fondest hope is to be able to provide transplants for all candidates in need, to prevent deaths and needless suffering while waiting.

As you may recall from your work with us, the primary mandate of UNOS as operator of the national Organ Procurement and Transplantation Network (OPTN) is to allocate organs from deceased donors equitably among transplant candidates.  Other significant roles, as specified in federal law and regulation, including maintaining a clinical database on all donors, candidates and recipients; monitoring compliance with OPTN policies; and investigating donation- or transplant-related issues that may pose a risk to the health and safety of transplant patients, living donors or the public.

Promoting organ donation is interwoven among all of our responsibilities, and transplantation depends entirely on the public’s willingness to donate.  That said, managing the organ donation system is not a fundamental mandate that federal law or regulation has assigned to us.  Our essential responsibility is to make sure that available organs are used in the most responsible and effective way possible.

State and federal law governs the process of donation in the United States.  Any change to the current voluntary nature of donation, whether that would involve preferred consent, financial incentives, preferred status or other means, would involve a public initiative to amend the law.  UNOS, as a corporation, has declared its support of careful study of potential incentives, financial or non-financial, that would encourage donation while respecting individuals’ freedom of choice.  Such study may involve legislative efforts to suspend the law to allow examination of the results.  As a federal contractor for the OPTN, UNOS cannot develop policies not supported by the law or expend limited resources lobbying for legislative changes beyond the OPTN’s mandate.

One of the fundamental questions UNOS is seeking to answer has to do with the potential number of persons who could qualify for deceased organ recovery.  Our Center for Transplant System Excellence is conducting a Deceased Donor Potential Study. This study will identify the total number of medical cases in which persons could be deceased organ donors regardless of issues of consent. The results of this study will provide a better understanding of what is possible. The merits of whether a system based on altruism is the best approach could then be understood in the context of what is possible. It may well be that the number of medically suitable cases as currently defined is not adequate in any circumstance.

Many people are convinced that the delicate nature of donation may be adversely affected by negative connotations or perceptions generated by controversy over debates about changes to the underlying legal system such as presumed consent. That being the case, it is prudent to pursue the DDP Study to learn what the potential might be before considering whether to advocate for a fundamental change.

Among key strategic goals for the OPTN are increasing the number of transplants performed and optimizing post-transplant survival.  Even with the current supply of donated organs, we can increase utilization of organs and enhance survival by better matching available organs with candidates who are the best long-term match.  In promoting organ donation, we actively support efforts such as those of Donate Life America, which has recently announced more than 100 million Americans have formally registered their wish to donate organs and tissues and has set an ambitious goal of 20 million new donor commitments this year.

We all agree a higher rate of donation is essential to save lives and relieve suffering of men, women and children anxiously awaiting an organ transplant.  UNOS and the OPTN are dedicated to helping save and enhance lives through organ allocation.  Whether society may be ready to adopt a new model for the process of organ donation is an important discussion that would involve society as a whole and active support of state and national lawmakers.

Walter Graham

CEO

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s nearly 2,500 member Organ Transplant Initiative and the author of most of these donation/transplantation blogs.

You may comment in the space provided or email your thoughts to me at bob@baronson.org. And – please spread the word about the immediate need for more organ donors. There is nothing you can do that is of greater importance. If you convince one person to be an organ and tissue donor you may save or positively affect over 60 lives. Some of those lives may be people you know and love.

Please view our video “Thank You From the Bottom of my Donor’s heart” on http://www.organti.org This video was produced to promote organ donation so it is free and no permission is needed for its use.

If you want to spread the word personally about organ donation, we have another PowerPoint slide show for your use free and without permission. Just go to http://www.organti.org and click on “Life Pass It On” on the left side of the screen and then just follow the directions. This is NOT a stand-alone show, it needs a presenter but is professionally produced and factually sound. If you decide to use the show I will send you a free copy of my e-book, “How to Get a Standing “O” that will help you with presentation skills. Just write to bob@baronson.org and usually you will get a copy the same day.

Also…there is more information on this blog site about other donation/transplantation issues. Additionally we would love to have you join our Facebook group, Organ Transplant Initiative The more members we get the greater our clout with decision makers.

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