32 Years Of Altruistic Organ Donation and The Death Toll Is Rising. Is it Time For a Change?

By Bob Aronson

Over the years I’ve written a great deal about organ donation and whether we should continue with the altruistic program we have now, or consider some sort of compensation for organ donors and/or families.

The problem is huge, bigger than huge because 22 people die every day that could have lived had enough people become organ donors.

So, let’s start with the problem. Well, it’s a big one. 120,000 plus people on the waiting list and under 30,000 transplants performed each year with those organs coming from just 13,000 donors. That means you have about a 25% chance of getting a transplant if you can even make it onto the list. That percentage goes down each year because the number of donors is not keeping up with the number of people being added to the list. So, the longer you wait, the less likely you are to get an organ. If you really study those numbers you can understand why patients awaiting new organs are nervous and you can understand the urgency. You see, they are on the list because modern medicine has run out options. These patients have been told they will die unless they get new organs. I was on that list, I know of what I speak. In my case all the stars lined up just right and I got a new heart. I was beyond lucky.

So – from where do the organs come?  The answer is that the number of transplantable organs depends entirely on a national voluntary or “altruistic” system where people donate organs out of the goodness of their hearts. We’ve been doing that since NOTA (the National Organ Transplant Act) was passed by congress in 1984.  Here is the most current list of human organs that can be transplanted. In case you are wondering, here’s what can be transplanted; liver, kidney, pancreas, kidney/pancreas (can be done at same time), heart, lung, heart/lung (can be done at same time). Intestine, vascularized composite allografts (VCAs), such as face and hand transplantation.

Here’s where I start getting into trouble. Logic would indicate that if a system put in place over 30 years ago keeps falling farther and farther behind the demand, then I cannot help but think the system is failing.  The system is not a total failure because it does save many lives, but it is failing because the gap between supply and demand is widening. Now I suspect that some people will argue the “Failing” point, but you can’t argue with the numbers. The system isn’t working. And every time new approaches are proposed, like some sort of compensation, the ethicists loudly proclaim that the practice would be unethical. Ok, but what’s ethical about allowing 8,000 people to die each year because there are not enough organs? Why isn’t someone questioning the ethics of that fact?

Before we get into what can be done about the organ shortage we should discuss briefly the two kinds of organ donors. There are living donors, people who can donate one of their two kidneys or a part of a liver. And – there are deceased donors. In both cases insurance will pay for the removal and transplantation of the organs, it costs the donor absolutely nothing. But there are other expenses that are not paid.

Let’s start with living donors. In order to qualify they must undergo a series of tests, then travel to the transplant site, have a short hospital stay following the recovery of the organ and then travel back home. And, God forbid, there could be complications down the road.

None of those expenses are covered by insurance. When you have to take time off of work to be tested, pay for travel, lodging more time off for the surgery and then travel home again, and maybe suffer complications later, the dollars can begin to add up.  Again, logic says there just might be more living donors if their costs were covered. As it is they act as disincentives.

The same, unfortunately, is true for deceased donors and their families. Many of these donors have been hospitalized for a long time before they died. Then, of course, there was terrible grief followed by funeral arrangements. Again, while insurance paid for the recovery of the organs and all medical costs associated with procedure, some families were left with only a, “Thank you,” and a pile of medical bills topped by funeral expenses. Sometimes these burdens are unbearable for families.

Here’s an example. In 1993 a man later identified as William Michael Lucas, 34, an unemployed man was badly beaten outside his home. He was taken to the hospital and treated, but finally after an extended and expensive hospital stay, succumbed to his massive injuries. It was determined that some of his organs were transplantable and his heart and liver went to Pennsylvania Governor Robert Casey.

The transplant was successful and Governor Casey went on to live for another seven years. Not only did Lucas save Governor Casey’s life, everyone who took part in the organ recovery and transplant was paid which includes, clinics, hospitals, surgeons, medical staff, and the Organ Procurement Organization (OPO) among others.

While all this was happening the Lucas family didn’t get a penny. All they got was inconsolable grief and a deluge of medical bills and threats from creditors. It is now well over 20 years since the transplant and a $6,200 funeral still remains unpaid. Somehow, to me, this just isn’t right. Everyone got paid for the role they played in Mr. Lucas’ gift of life — everyone, that is, expect for the Lucas family. Now ask yourself, is that fair?

I want to be perfectly clear here, I have no problem with those mentioned getting paid, they are all people and organizations with very special skills and they deserve to be compensated. But didn’t the Lucas family deserve some consideration. Wouldn’t it make just a little bit of sense to relieve them of the medical bills and the funeral burden and maybe some grief counseling, too? That seems only fair.

I am not suggesting for a moment that families get paid, that there be a cash value for organs. That would be wrong and it would violate U.S. law. It is illegal to sell or buy human organs. I have to believe, though, that people might give organ donation a little more consideration if they knew that the financial burden that usually goes with it would be relieved.

What I am suggesting is not a radical argument. If Medicare and other insurance coverage can come up with the dollars to pay the huge costs of paying transplant teams and all the others associated with the procedure, they certainly can find a way to defray the costs to the donor.

Medicare could easily find the money to do this if they were allowed to do two things. One is to negotiate the price of prescription drugs and the other is to pay for anti-rejection drugs beyond the three year limit which is in effect now for non-Medicare enrolled patients.

As a part of the Medicare Part D. Agreement under President George W. Bush insurance companies were talked into cooperating by guaranteeing them they could charge Medicare whatever their retail price was for drugs. In other words, Medicare was not allowed to negotiate the price of drugs. The VA can do that, but not Medicare. Negotiating drug prices would bring them down far enough to pay for the organ donation expenses suffered by some organ donors.

The second issue that would help is this one and it is a doozer. It is so absurd it is beyond one’s ability to comprehend. Of the 120,000 people on the transplant list some 82 percent are Kidney patients. Under a law passed years ago Kidney patients and only Kidney patients who are not of Medicare age can have organ transplants paid for by Medicare and Medicare will pay for anti-rejection drugs for 36 months. If you are of Medicare age the agency will pay for those drugs for the life of the patient.

This policy makes absolutely no sense because, ironically, Medicare will pay for a lifetime of dialysis if you go into rejection because you can’t afford to buy the drugs that prevent it, Medicare will even pay for another transplant and/or dialysis at costs that are many times the annual expense of immunosuppressant drugs. This political sleight of hand act not only wastes U.S. taxpayer dollars, it can actually cause death.

Medicare spends around $90.000 per year for an individual who is on dialysis and $125,000 during the first year of a kidney transplant. However, after that first year the transplant patient’s drug costs plummet to $25,000 or a little over $2,000 a month.  Not many people have an easy time paying that bill but for the federal government it would be a cost saving measure to cover the drugs rather than pay for a new transplant or more dialysis.  Furthermore, extending immunosuppressive coverage beyond the 36-month post-transplant limit would improve outcomes and enable more kidney patients who lack adequate insurance to consider transplantation. Most transplant recipients also have a higher quality of life, and are more likely to return to work than dialysis patients and if they return to work, they start paying taxes again.

So what are the options for increasing the number of human organs for transplant. Well, the list is not a long one.

Presumed consent. That means everyone is automatically considered a donor unless they opt out and everyone would have that opportunity. Spain is one of the nation’s that has adopted this policy and it has become the world’s leader in organ donation, despite the fact that it still gives families of the prospective donor the right to approve or disapprove of the idea. Spain’s deceased organ donation rate is 36 per one million inhabitants. It is ten less in the United States at 26 per million.

Mandatory organ donation. While this is certainly an option. It is most unlikely. Polls have indicated public opinion is overwhelmingly opposed to such an idea.

The Life Sharers option.  Life Sharers is a 12000 member group that pledges to donate organs with the idea that only organ donors should get organs if they should need a transplant. It might be a decent idea, but it has never really caught on and is not growing fast enough to have any significant impact on the organ shortage.

Legalize the sale of human organs. It is unlikely that such a proposal would be approved in the United States. The only nation in the world that allows for it is Iran and Iran, as a result, has no organ shortage. In Iran 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. In the U.S. the argument against paying people for their organs (living donors of kidneys and livers) is that the practice would prey on the poor.  Supposedly only people who are in desperate need of money would sell their organs.  “The rich or reasonably well off,” the argument goes, “Don’t need the money so few of them would become donors under such a system.”  Additionally, wealthy people could buy organs from the poor but the poor could not afford to buy organs if they needed them.

An added emphasis on biomechanical or other organ options like Therapeutic cloning. Chances are pretty good that by the time humans quit bickering about paying for organs in one way or another we will already have organs produced by a combination of science and technology. Certainly a major government commitment should be made in this area.

Limited compensation for organ donors. There is already a precedent of sorts. Human hair and blood has been for sale for decades and covering expenses has some influential supporters.

Dr. Sally Satel is a Kidney transplant recipient and a resident scholar at the American Enterprise Institute in Washington D.C. She is editor of “When Altruism Isn’t Enough: The Case for Compensating Kidney Donors” (AEI Press, 2009) and a practicing psychiatrist and lecturer at the Yale University School of Medicine. She has long supported the idea of compensating organ donors. You can read the Wall Street Journal story here.

http://www.wsj.com/articles/SB10001424052748704322004574477840120222788

Dr. Satel has long been a proponent of compensating organ donors. In a publication of the Elder Law Journal, Satel had this to say about compensation for donated organs.

“What kinds of compensation should be offered? A reasonable case could be made for an outright payment. After all, it is hard to argue that an individual is competent enough to sell an organ yet unfit to manage the money he receives in exchange for it.

Donor protection is the linchpin of any compensation model. Standard guidelines for physical and psychological screening, donor education, and informed consent could be formulated by a medical organization, such as the American Society of Transplant Surgeons, or by another entity designated by the federal Department of Health and Human Services. A waiting period of three to six months could be built in to ensure the prospective donor has ample time to think it through. Monitoring post-transplant donor health is important as well.

One idea is to provide lifetime health insurance, through Medicare or a private insurer for the donor. The donor would receive annual physicals, routine medical screening, and long-term follow-up, in addition to standard health coverage. A federally sponsored registry of donors could help physicians study long-term outcomes for donors and take steps to remedy physical or psychological difficulties that arise.

MULTIPLE COMPENSATORS In this scheme, an intermediary broker would coordinate donors, compensators (the entities that pay for the transplants), and medical centers. Medicare would be one of several possible compensators, along with private insurers, charitable foundations, and perhaps a fund established through a surcharge added to the cost paid by insurers and foundations.

PRIVATE CONTRACTS The easiest way to start a market for organs is simply to change the law so as to allow someone who needs an organ and someone who wants to sell one to make their own arrangements through contract—as infertile couples currently do with surrogate mothers. But such a system would inevitably attract criticism because it appears to favor the rich over poor. You can learn more on this subject by checking out these links:

http://www.sallysatelmd.com/html/2007-04-16_ElderLawJournal.pdf http://www.cnn.com/2012/07/03/health/allowed-sell-organs-time/index.htmlhttp://www.npr.org/2008/05/21/90632108/should-we-legalize-the-market-for-human-organshttp://www.newint.org/argument/2010/10/01/human-organ-trade-debate/http://plato.stanford.edu/entries/organs-sale/

“Is it ethical to compensate people for their organs?” Dr. Satel thinks so and offers some interesting options.

“My colleagues and I suggest a system in which compensation is provided by a third party (government, a charity or insurance) with public oversight. Because bidding and private buying would not be permitted, available organs would be distributed to the next in line–not just to the wealthy. Donors would be carefully screened for physical and psychological problems, as is currently done for all volunteer living kidney donors. Moreover, they would be guaranteed follow-up care for any complications.

.Many people are uneasy about offering lump-sum cash payments. A solution is to provide in-kind rewards–such as a down payment on a house, a contribution to a retirement fund, or lifetime health insurance–so the program would not be attractive to people who might otherwise rush to donate on the promise of a large sum of instant cash.   The only way to stop illicit markets is to create legal ones. Indeed, there is no better justification for testing legal modes of exchange than the very depredations of the underground market.”

.Dr. Satel and several colleagues have called on congress to reform the 1984 National Organ Transplant Act (NOTA), which makes it a felony to provide material reward for an organ.

The issue of paying for human organs is controversial to say the least but that does not mean it can’t or won’t work.  Iran, which is usually not a good example for much of anything, allows for such a program and the result reportedly is that their waiting list has sharply declined and in some cases it has diminished entirely.

http://freakonomics.blogs.nytimes.com/2008/04/29/human-organs-for-sale-legally-in-which-country/

What we need in the United States is an open dialogue free of emotional outbursts that would allow for a small pilot program to one or more of these ideas.  More importantly I am appalled by the attitude in official circles that suggests, “There’s nothing more we can do about increasing the supply of organs.” That’s giving up and I refuse to surrender to such backward thinking. If we can get agreement on sending people to Mars by 2035 we sure could get agreement on putting an end to organ transplant waiting lists. It’s also time for everyone to admit the altruistic approach is simply inadequate. People are dying, 22 of them every day and we are satisfied with that? I think not. There is nothing wrong with admitting failure.

All of the volunteers and others who have worked so hard to increase altruistic organ donation deserve a lot of credit, they’ve saved thousands of lives, but I think they, too, would agree it’s time to stop the dying, it’s time to end the shortage. It’s over 30 years since the altruistic approach was started, how much more time do officials need to admit failure and try other approaches?

The time to act is now. We have a new President and a new congress. It’s time to get them involved in saving lives. That is after all, why they were elected.

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Bob Aronson is a 2007 heart transplant recipient . He is the founder of two social media sites. 1) Facebook’s 4,300 member Organ Transplant Initiative a support group that also offers a wide variety of educational information and  2) this site, Bob’s Newheart. Here you will find nearly 300 blogs on issues surrounding organ donation/transplantation. Your comments are always welcome.

If you are not an organ donor, becoming one is simple. Just go to http://www.donatelife.net and sign up. It only takes a couple of minutes. When you are done tell your family so there’s no confusion when the time comes. That’s all there is to it.