UNOS — A Failure At Increasing Organ Donation


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 pool.  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.      

Posted on February 17, 2008, in UNOS & Organ Donation. Bookmark the permalink. 12 Comments.

  1. Status 1A should not be mandatory Hospitalization, If the transplanting team coordinator & the numberous Doctors recommends status 1A and the patient can be safely maintained at her apartment without spending useless months waiting at a hospital then the STATUS SHOULD be granted. This person LIVES 3miles purposely from the transplant hospital and has been maintained infection free at her apartment. Why does UNOS not look at this option ? Her insurance will not pay for just this hospitalization unless warranted plus it will subject her to possible infections and emotional stress !
    UNOS Please Help ! Change Status 1A to include outpatients with documentation by transplant teams.

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    • As far as I know you do not have to be hospitalized to be eligible for a transplant. I was on the list for only 13 days when I got a new heart and I was neither 1A nor hospitalized at the time.

      bob

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  2. Joel:

    I appreciate everything you have said about UNOS. As a collector of important transplant data, they organization stands alone. UNOS is also beyond criticism with regard to the way it reacts when a donor organ is available for a patient who needs it. I’m a great example! I have absolutely no criticism about any of that part of the UNOS mission. Furthermore, I have no problem with you personally. I know you and respect your ability to do your job. There is no doubt that you feel deeply for those on the wait list and wish you could do something for them. Unfortunately, your job places you in a position of defending the indefensible.

    My argument is simple and you have not addressed it because you can’t. Since 1995 anywhere from 70,000 to 100,000 people have died while waiting for an organ. In the same time, the gap between the number of donors and the people who need them has widened significantly.

    My central question is this, “How can UNOS watch thousands of people die year after year and not change what they can, or vigorously advocate for change in the effort to increase the number of organ donors.” That, my friend, is my only question.

    There simply is no refuting the fact that UNOS has been a total failure in increasing the number of organs to match the number of people who need them. Attempting to pass the buck to the OPOs and Donate Life America is an extremely lame excuse. UNOS has incredible influence with national thought leaders and the people who make laws. It is time you begin to use the influence, rock the political boat and fight for the dying instead of a failed policy.

    It used to be said that insanity is when you keep dong the same thing over and over and expect a different result every time. As far as I am concerned, that is what UNOS is doing and — it is insane! How on earth can you support the status quo when the status quo just means more people will die? When UNOS becomes a leader in the effort to increase organ donation and when donation actually begins to catch up with the need for organs, then I will be favorably impressed. To this point UNOS has shown absolutely no leadership. It appears to be more interested in keeping its fat contract than with stopping the dying.

    Best regards
    bob

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  3. From Joel Newman at UNOS Communications in response to Bob Aronson’s last comment.

    First of all, I failed to appreciate that you are writing from your hard-earned personal experience. That point is well taken, and I apologize for taking a different approach.

    Let me back up a bit to move forward in my response. I have found that many people assume UNOS is a monolithic organization with control over all aspects of organ donation and transplantation. Were that the case I would respond differently. I think the better way to view UNOS is as a steward over parts of the donation and transplantation process, just as transplant surgeons and OPOs are stewards over other parts of that process.

    Since UNOS began operating the OPTN, something like 400,000 organ transplants have been performed. UNOS did not make that organ, nor did a transplant hospital, nor did an OPO. It was a selfless human gift, conveyed from life to life. All too often there have been other people desperately awaiting a transplant who died without the opportunity for a transplant. This occurred despite any capability of UNOS, or the hospital, or the OPO. It was a tragic lack of human commitment at the time it was needed. I will not rise to defend that. I share in that tragedy.

    In my earlier post I discussed some of the things UNOS is doing to promote organ donation. None, by themselves, have solved the organ shortage. All, I believe, help in some way. I don’t know of any social dilemma that was ever solved overnight or without great controversy.

    Reasonable, smart, caring people can and do have different ideas on solving the organ shortage. I’d venture to say all have some caveats and counterarguments. You talk about the OPTN/UNOS Ethics Committee and its views on various approaches. I once staffed that committee (I was not a participant, but an organizer and a scribe). In its white papers, the committee tried to tease out the various pros and cons and offer some tentative conclusions. Any action from there is probably on a public scale – organ donation is governed by law, not policy. And issues of law are beyond our scope of control.

    Some of these approaches have been aired out. I’m aware of bills in New Jersey and Delaware for either presumed consent or mandated choice. Similar bills have been brought up in other states, later to die in committees. In my opinion, they have died largely because the popular view of individual rights trumps the limited intrusion of a donation request. (This same debate is raging in the U.K. at the moment).

    You ask when UNOS has talked to recipients or families who have lost loved ones on the list. In the “big UNOS” sense, that would have been at least yesterday at our board of directors meeting. One-third of the board are people who have personal experience with organ donation and transplantation. I remember one who died awaiting a retransplant, and his widow served the remainder of his term. We have a Patient Affairs Committee, as well as individuals on just about every other committee with personal experience in donation or transplantation.

    In my personal experience, I couldn’t tell you how many times I’ve interacted with candidates, recipients and family members. More than a thousand for sure, in person, by phone, by e-mail and snail-mail. Ultimately what they want is an opportunity for a transplant, or a reason why their loved one couldn’t benefit. If I were God for a minute, I would help them all. I’m left with doing what I can. For most I can offer some information, for a few a little hope. Later I find that some got a transplant, or some didn’t. Mostly I never hear back. I do think of them, more than is healthy sometimes. I hope I have done all I can. Some I know I could have done better, which eats at me.

    I don’t have answers to the cosmic questions. I am a fallible human being working for a human, thereby fallible system. I do what I can, and I work with other people who do what they can. You’re free to draw conclusions from there.

    Best wishes.

    Joel

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  4. Dear Joel:

    It is good to hear from you. Your comments will be there for all to read. Please note though, that in the profile section of my blog you will notice that UNOS is listed as a former client along with LifeSource and the Mayo Clinic. (“For the last 27 years I have been a private communications consultant specializing in healthcare. My very first client was the Mayo Clinic and I am pleased to be able to say that I am still doing some limited work with them. I also worked with 3M health care, UNOS, LIfeSource and CH2M HILL, one of the nation’s largest environmental engineering firms.”)

    Yes, I worked with UNOS and yes, if I depended on the memories of that brief time I might write a more favorable blog. But now I am a transplant patient, one who is eternally indebted to my unknown donor. I have seen and lived the issues from a perspective you cannot possibly understand. I have many friends on the wait list, friends who have been waiting for years and feel as though the organ donation effort is a failure because the gap between available organs and those who need them continues to grow and because they keep seeing their friends die.

    I also do not understand why your response has to be so defensive and totally without compassion. I am only asking you to make a major effort to accomplish part of your mission statement, “Advancing organ donation.” I am also asking you to defend the number of people who have died while waiting since UNOS got its contract in 1986.

    Joel, I assume we have the same goal —“stop the dying!” But your comments indicate that UNOS has lots of problems and issues to face, that you are extremely busy and that you are “…doing the best we can” with the issue of organ donation. Well, your best is terrible. Furthermore, I and those on the list do not care about your problems, we are only interested in solutions and again UNOS only offers the same old approach that sees more people dying every year. You call that progress? Obviously UNOS is satisfied with the status quo and the status quo is that more people are dying every year.

    I understand your need to defend UNOS and I hope you understand that I will spend the rest of my life trying to increase organ donation so both my friends and others on the list have a better chance at living. UNOS’ bioethics committee has issued white papers on a lot of issues regarding increasing the organ supply. But they have never addressed the ethical issues related to the thousands who have died waiting. How on earth can anyone think that is ethical?

    How many more years will go by, how many more people will die before UNOS sees the light and has the guts to either adopt a different approach or use their influence to get lawmakers to do so. Even an approach as benign as requiring organ donor education and then a commitment before issuing a drivers license would be a positive action. All that data you collect is wonderful, but it is cold and impersonal. How often does the bioethics committee or anyone else at UNOS talk with recipients like me or the families of those who have died over the many years? UNOS has stuck with the same old “altruistic” formula. As I said in my blog, “It doesn’t work UNOS…it doesn’t work”

    Bob

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  5. Dear Bob,

    You mention that in “full disclosure” you received a heart transplant within 13 days of being listed. Perhaps a more complete disclosure would include the fact that you were once a paid PR consultant to UNOS, and later a volunteer member of the UNOS Communications Committee. I point this out only to suggest you should have more understanding of the transplant environment, and the role of UNOS, than these posts indicate.

    There are several things I could address individually, and perhaps I will later. But a key point, for you and for your readers, is to understand UNOS’ role in the transplant universe. Since 1986, under federal contract, we’ve been managing the national network to match donated deceased organs with patients available and to collect, maintain and publish transplant data. Many tasks flow from there, including the process of setting, analyzing and changing allocation policy and helping directly in organ placement as needed. In the last few years, our mandate has grown to include issues such as monitoring patient safety issues for transplant candidates and living donors.

    Do we promote organ donation? Yes, as actively as possible. We helped found Donate Life America and continue to provide it financial and logistical support. We are involved in a number of medical education efforts to make sure medical professionals involved in the donation process understand and support donation. We help fund conferences, such as one last year with the primary goal of eliminating pediatric waiting list deaths. We partner with the federal government on collaboratives to share best donation practices in one area of the country with others nationwide. Could we do more? Yes, we could and we would like to. But most of our time and resources are spent supporting the network and getting necessary commitment from members and the public to make it work.

    As far as the communications challenges, Bob, you should understand the environment we face. You’ve been part of those discussions with UNOS folks. I have often compared what we do to air traffic control. Many thousands of planes take off and land every day in the U.S., successfully and safely (if not always on time). The air traffic system is handling more demand all the time and with an increasing safety record. And the public hears about this system… when? Usually in the rare instance a plane crashes or flights get grounded. We deal with a crowded marketplace of ideals, a sensationalistic 24-hour news cycle and an increasingly cynical public. We do try, and we do care. But it’s hard to be heard, much less trusted, over the competing din.

    In the last five years, deceased organ donation has increased about 25 percent. Is that enough? No. Is it the right direction? Yes. The approaches you and others suggest have strengths and weaknesses. They should be considered, and in some cases are actively being proposed. Those efforts are largely beyond our mandate and scope. In my 15 years here I have learned that organ donation is a deeply-held personal commitment. It often takes more thought and more emotional connection to persuade people to become donors than to get them to switch detergents from Brand X to Brand Y.

    I want everyone in need of a transplant to get their opportunity. It troubles me to know that today, and tomorrow, not everyone will get that chance. But I believe that the collective efforts of the field are making progress and laying the groundwork for more lives to be saved and enhanced.

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  6. Just for completeness I would separate your category of compensation for cadaveric organs into two basic forms of compensation: (1) directed at the donor himslef, and (2) directed at his next of kin. For almost two decades I have been promoting an “options market” directed at the donor in which people would be offered a free option to have a substantial payment made to their designee or estate if they agree to permit their organs to be harvested at death and viable organs are retrieved.

    That said, I have also lent my name and support to “rewarded gifting” plans, payment to living donors as well as to Lifesharers. I am certain that each and every one of these proposals will substantially increase the supply of ttransplant organs and thereby save lives and reduce suffering.

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  7. To dju: UNOS may not be able to directly implement most of the options, but they have tremendous influence with members of congress, regulators, governments, opinion leaders, and the medical community. They should exercise their influence to bring about as many options as possible to increase organ donation.

    A direct suggestion would be to request driver’s license agencies to add one simple sentence to the ‘Organ donor – check yes or no’ line on the application: ‘If you or one of your loved ones needs an organ transplant to survive, would you want an organ to be available? ‘

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  8. Bob:

    Of the six options you suggested for increasing the number of organ donors, only one can be implemented by UNOS without the need for legislative action. That is the fifith option, giving registered organ donors priority in receiving organ transplants. See my commentary on this subject in the Naples Daily News:
    http://www.naplesnews.com/news/2007/sep/22/guest_commentary_organs_organ_donors_could_solve_s/

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  9. One of th most concise opinion pieces I have seen on the mismanagement of the national transplant systen in this country. UNOS is a private contractor not interested in improving the system. Instead, the UNOS dinosaurs focus on protecting their revenue streams rather than patients in need.

    As I have written before, there are many alternatives available today. UBOS rejects them all because of their territorial policies. Compensating donors, new and innovative ideas such as those put in play by Dave Undis and his network at lifesharers.org, matchingdonors.com started by Paul Dooley and Dr. Jay Lowney, etc. All rejected and condemned by UNOS.

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  10. Just in — Headlined FIRST IN NATION —Joseph Kenney, a likely Republican candidate for governor, suffered a tough setback last week with the Senate killing one of his bills and shelving another that he launched on behalf of a Milton couple who lost their son to Wilson’s disease.

    Kenney wanted New Hampshire to become the first state to prohibit someone from being denied a place on an organ transplant list because they lack insurance. The second bill would have required all hospitals in the state to have written criteria on transplant listing available to patients prior to admission.
    http://www.nashuatelegraph.com/apps/pbcs.dll/article?AID=/20080217/COLUMNISTS12/192231308/-1/columnists

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