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UNOS — A Failure At Increasing Organ DonationFebruary 17, 2008

Posted Nov 04 2009 10:02pm

UNOS Mission http://www.unos.org/whoWeAre/ “Our mission is to advance organ availability and transplantation by uniting and supporting our communities for the benefit of patients through education, technology and policy development”.(UNOS is the United Network For Organ Sharing.  They are charged by the federal government with coordinating organ transplants in the United States. In 1986,UNOS got the initial federal contract to operate the Organ Procurement and Transplantation Network (OPTN). 

There are two parts to the UNOS mission; increase organ availability and advance transplantation.  They have failed in increasing the number of available organs to a level that matches the need for them.  By UNOS own admission the gap between available organs and the need for them has been widening for years.  Their efforts or lack thereof have resulted in the deaths of thousands.  Is anyone at UNOS paying any attention to reality? Are they so concerned about keeping their government contract that they refuse to make any waves?  To those who award this contract I say, “How about holding UNOS’ feet to the fire before they are granted another contract.”

According to Donate Life America( http://donatelife.net/UnderstandingDonation/Statistics.php ) 90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor —  30% after almost 30 years of promotion.  It isn’t working UNOS — It isn’t working!!

As of today, there are almost 100,000 people on the U.S. organ transplant waiting list; many of them are going to die.  Last year some 7,000 people died while waiting for organs.  Since 1995, over 70,000 (could be as many as 85,000) people lost their lives while waiting and if you count those who were taken off the list because they were too sick for the surgery, the number is closer to 100,000.  That’s unacceptable and UNOS’ refusal to seriously consider alternative methods of increasing organ donation is to blame.  Every time UNOS assembles its bioethics committee to discuss a proposal, the result is the same.  They issue a white paper that includes all the ethical reasons the idea cannot work. The topic is then shelved and never again discussed.  If UNOS finds these issues important enough to need the attention of the bioethics group, then shouldn’t they bring the same group together to ponder the ethics of 70,000 deaths?   I am not an ethicist but I can’t help but believe that 70,000 deaths is unethical, immoral and perhaps even criminal.

I have no favorite method I want UNOS to explore; I just want them to objectively discuss all the alternatives to the present program of “informed consent” from the perspective of stopping the dying, not from the perspective of protecting themselves from controversy.  Their intransigence has in itself caused the controversy about which I am writing (I wonder how many attorneys UNOS retains to protect them from themselves).  

In the interest of full-disclosure I should point out that I received a heart transplant on August 21, 2007 at the Mayo Clinic in Jacksonville, Florida at the age of 68 and got the organ in only 13 days.  Yes, that’s some kind of miracle so I can’t complain for myself.  I can complain, though, for the many patients I’ve met who have been on the wait list for years while UNOS finds new ways to preserve an ineffective system.

In my opinion (obviously not a humble one) UNOS has an organ donation leadership vacuum exacerbated by a complete lack of vision that is highlighted by a refusal to accept reality. Real leaders offer solutions, but UNOS bioethical meetings produce only problems, excuses for not changing a system that is not broken — it never worked!   Furthermore, their meetings are contained within a narrow paradigm that doesn’t include consideration of the number of people who are dying or who have died while waiting.  UNOS acknowledges that the gap between donors and potential recipients grows wider each year, yet they shrug their shoulders and blame people for not being altruistic enough.  Have they ever considered that they are the problem, that the system they use is the problem? The message UNOS is sending listed people is, “Sorry you’re dying but preserving our system is more important than you are!”   

So, what are some alternatives you ask?  There are many and some, like donor compensation, have already been discussed and discarded by UNOS.  Others have not yet appeared on their bureaucratic radar.Here are some of the options:

  1. Presumed consent.  A policy where you are a presumed organ donor unless you notify the government that you don’t want to be. This is done is Spain and Belgium and both countries have significantly reduced their waiting list.  England and others are moving in that direction.   The Institute of Medicine (IOM) of the National Academies of Science has supported the concept of presumed consent and proposes that future legislative enactment can increase the organ donor’s poo l.  A paper on the subject was accepted for presentation at the Society of Critical Care Medicine’s 36th Critical Care Congress February 17–21, 2007, Gaylord Palms Resort and Convention Center, Orlando, Florida, USA.  http://www.biomedcentral.com/1472-6939/7/14  

2.Forced choice.A person has to either opt-in or opt-out when they renew their driver’s license. You don’t have to be a donor but you also can’t not decide.     

3.   Education and mandated decisions. A New Jersey Senate measure would require organ donor education and mandate decisions before issuing a drivers license.     

4.Compensation for organs.  Not selling them but perhaps covering funeral expenses for the organ donor.  Funerals can be expensive and people just might become donors for that reason (there are many other forms of compensation as well).        

5.  Only organ donors get organ transplants. (www.lifesharers.org) Give people who are organ donors priority in receiving organ transplants. People just might be motivated to become donors if they know that not making a commitment means they won’t get an organ if they need one. 

6. Living donor kidney compensation is being promoted at the University of Minnesota by Dr. Arthur Matas who is also the former president of the American Society of Transplant Surgeons, says. “ The average wait time for a donated kidney in the early 1980’s was less than a year. Today, it’s more than five years – too long for many.”   “Dr. Proposes Sale of Kidneys”  http://www.abcnews.go.com/WNT/Health/story?id=2977619&page=1

Are these proposals controversial?  Absolutely! But should that keep us from discussing them? Absolutely not!   Obviously, they have been designed and considered by highly educated, principled people whose ethical sense is at least as credible as the UNOS bioethics committee.  I’m sure that the six options I listed here are a mere tip of the iceberg but they represent a start. If readers have additions, please send them to us.

Now a quick word about OPOs (Organ Procurement Organizations).  There are about 60 of them in the U.S. all of which are sworn to promote organ donation according to the woefully inadequate UNOS policy.  The OPOs have done wonderful work considering the tools they have to work with.  If it weren’t for the OPOs there likely would be no organs at all.  I know many OPO people, they get it!  Just imagine how many lives OPOs could save if UNOS provided some imaginative leadership.  But then, imagination and leadership are not among UNOS’ attributes when it comes to increasing the supply of organs.

One more thing.  Have you ever noticed that UNOS has no organ donation spokesperson, one who speaks to the issue with the media and in public forums?  Why is that?  It’s probably because they would like the issue to have the lowest possible visibility.  Or — perhaps it is because no one at UNOS wants his or her name tied to this monumental failure.

UNOS, you are doing us, the very people you contracted to protect, a terrible disservice.  As of this writing there are nearly 100,000 people on the transplant list. Give them hope!  Help them live! You have the power and the influence to stop the dying.  Exercise it!

Readers….let us hear from you.  I’ll pass your comments along to lawmakers, regulators and UNOS.   By the way, if you are not an organ donor become one today!Since my transplant I have made it my life’s goal to do whatever I can to increase organ donation.  If that means stirring up hornets nests — bring on the hornets nests.  I will not stop with a couple of blogs.       

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