UNOS & Organ Donation

Let’s Fire UNOS And Start All Over Again

Washington Post, March 22, 2008 – A third of patients on transplant list not eligible  

Today we learned from the Washington Post (http://www.washingtonpost.com/wp-srv/front.htm) that UNOS, (the private not for profit company that holds the government contract to coordinate organ donation and organ transplants), is playing games with the wait list.  The Post says that a third of the patients on the list are not eligible for transplants and questions whether those people should be on the list.  UNOS says, “Many patients are inactive for only short periods because of temporary complications or other issues that are often resolved.”

The point here is that UNOS has been caught fudging the numbers. If UNOS fudged the numbers what else have they fudged?  Or, what else has UNOS lied to us about?  I believe that this is just another piece of the puzzle that shows UNOS can’t be trusted?  Even former UNOS board members don’t trust the organization.  Included in the Washington Post story is this interesting tidbit: “The wait list is dishonest,” said Donna L. Luebke, a nurse who said she was rebuked by UNOS officials when she complained about the list near the end of the three years she served on the organization’s board of directors. “The public deserves to know the true numbers.”   

Readers please don’t be misled by this story.  No matter how you torture the numbers they will still confess to the fact that the gap between available organs and the people who need them is wide and growing and that’s because of UNOS’ failure to adopt policies that would significantly increase organ donation.  Let me offer you an example of how UNOS has approached the entire organ donation effort. 

If you were a member of a tribe that waved sheets in the air to prevent thunderstorms, how many times would you have to get drenched and hit by lightning before you’d think, “I’m all wet and scorched again, maybe we had better find a better solution.” My guess is no more than twice. Well, our friendly sheet wavers at UNOS are keeping the softer side of Sears in business.  They’ve been buying all of Sears’ sheets since 1984.  Anytime anyone complains that the current organ donation system is ineffective, UNOS sends its heavy thinkers out to wave a new batch of sheets while simultaneously issuing a Press Release that says, “See, we’re on top of it, we’re taking action.  We have a greater thread count in the sheets this year.”   “Oh,” our leaders say, “We can see that you are trying really hard.  Maybe bigger sheets will work better next year, let’s renew your contract and give you even more money” and almost immediately thousands of sewing machines in Guatemala and China begin to hum as Sears happily seeks to fulfill the latest UNOS order for super large sheets — this years model has handles.  

In the meantime the gap between the number of people who need organs and the number of available organs continues to increase and the number of people who die waiting for an organ gets ever larger — every year, despite the size of the sheets, the thread count, the number of people waving them and the new 2008 handles. 

For twenty-four years UNOS has continued the same disastrous organ donation policy while absolutely refusing to try any other approach to solve the problem.  They won’t even conduct a simple, controlled trial in small section of a small city.  They just hold bioethics meetings so they can develop grounds on which to reject everything that doesn’t include a sheet.  Almost every option suggested to them is “unethical, undoable, or too expensive.”  Besides, what would they do with all their sheets?  (I’m sure that my hometown of Chisholm, Minnesota (population under 5,000) would welcome a trial in any section of town.  Lakeview would be good, it’s across the lake and a little isolated from the city.  Let me warn you, though, these hard working iron miners are too smart to fall for the sheet trick.) 

Oh glorious leaders of UNOS, ye without the courage to change or the blessing of vision (they don’t even have the blessing of hindsight), heed the words of Mark Twain, “Loyalty to a petrified opinion never yet broke a chain or freed a human soul.”  Or as George Bernard Shaw said, “Progress is impossible without change, and those who cannot change their minds cannot change anything.”  Indeed, we have been subjected for twenty-four long years to not only petrified opinion but also to cowardice, fear of change and indifference to human suffering.  100,000 have died while the people in charge of organ donation keep waving sheets in the air.

Listen to me now UNOS — Listen to me!!!  I was on the transplant list and was one of the few lucky ones to get an organ (heart).  I know first hand what the desperation is like — what it is like to be chair bound — unable to function.  I know what it is like to pray each night that I will wake up in the morning.  I know what it is like to be on 22 medications every day, medications that cost as much as $50-100 a pill and more.  And – finally, I know what it feels like to be dying while the organization that is supposed to help refuses to seriously consider any method other than their failed “altruistic” approach to organ donation.  Have you no compassion?  How can you watch 100,000 people die and still wave your damned sheets?  When will you show us that you care? 

We hear your message UNOS, it is quite simple, “There are too many on the list and not enough organs, so if you are on the list you are probably going to die.”  What a great public relations program that is. Listed people may not have a lot of clout but we do have some intelligence and we are not fooled by your nonsense.  We see the numbers –over two million people die every year in the U.S. and last year there were only 8,024 deceased donors.  Doesn’t that fact give you bureaucrats a clue?  It’s bad enough that your efforts are inadequate but because of your intransigence OPOs, state legislatures, and others who want to do the right thing are hamstrung by policies that offer them little more than a new supply of the latest model sheets.  You are telling them that you don’t want real help, you only want to preserve your petrified plan while telling us that we are going to die and you aren’t going to do anything about it. 

Why do you steadfastly support a system that has been proven ineffective twenty-four times, people are dying and I, for one, hold you UNOS, responsible.  You know the system doesn’t work, you know that more and more people die each year, you know that the list of donors doesn’t come close to matching the number of people who need organs and yet you refuse to try anything new.  In my book that is reckless negligence.  The people at UNOS are afraid to admit they were and are wrong about how to increase organ donation.  They fit Einstein’s definition of insanity better than any group of people I’ve known.  Akhenaton(an Egyptian pharoh (1380-1362 BC), the predecessor of Tutankamen, and husband of Nefertiti) said, “True wisdom is less presuming than folly. The wise man doubteth often, and changeth his mind; the fool is obstinate, and doubteth not; he knoweth all things but his own ignorance.”  I submit that the people who make organ donation policy fall into the category of the “obstinate fool.” 

The dying people on the transplant waiting list have no way of speaking for themselves.  First, they are in the end stages of a disease and very sick, additionally they have no political clout, no money, no organization and little chance of living because some self-centered control freaks believe the issue is about them rather than patients.  They argue the ethics of change and maintain the status quo while people who are dying desperately need change from the status quo.  Is twenty-four years of failure to provide enough organs ethical?  Is doing nothing while people die ethical?  Why don’t you study that, bioethicists? 

I, personally, support a program of presumed consent where everyone in the U.S. would be a presumed organ donor unless they have opted out of the system.  Additionally I support incentive payments for organ donors.  Most certainly the devil is in the details but smart people can work it out.  We need to start all over again with people of vision, courage and compassion. 

We need a new approach and once we have it we should cancel the UNOS contract and repeal or amend the 1982 act that created this problem. We must stop the dying and UNOS is not the organization to do it. Please, readers, join me in this effort, comment on this blog and perhaps we can form a movement that will give hope to those who have suffered so long.  Together we can change the system.  

One thing for sure, UNOS is the problem, not the solution.

PEACE

UNOS — Communication, Still another Failure

 UNOS (United Network for Organ Sharing) keeps records of available organs and those who need them.  Then they coordinate the transplantation of the organs.  A very valuable and necessary service.  Beyond that, they are a data collection agency. They will be happy to tell you the number of people on the transplant list and the number of organs available.  They also provide organ and transplant data by race, age, gender and other categories.  So far, though, I have been unable to find any evidence of a real, visionary effort to increase the number of organs.  It starts with communication and at that UNOS is a failure.  All they do is gather information and respond when contacted and they do that poorly. 

In this blog, I will discuss UNOS failure number two — addressing the problem of minority organ donation (Don’t let me hear from anyone that it is the fault of minorities.  It isn’t!). 

How many of you have ever heard of MOTTEP (Minority Organ Tissue Transplant Education Program)?  Very few I’ll bet.  http://www.nationalmottep.org/  It is dedicated to doing what UNOS ought to do.  National Minority Awareness Day originated with MOTTEP at Howard University in Washington, D.C. The event was first recognized in 1996 by President Clinton.

First the problem: The following language is taken from: http://www.organdonor.gov/donor/index.htm) “—- about half of all the people on the organ waiting list are minorities who have a particularly high need for organ transplants because some diseases of the kidney, heart, lung, pancreas, and liver are found more frequently in racial and ethnic minority populations than in the general population. For example, African Americans, Asians and Pacific Islanders, and Hispanics are three times more likely than Whites to suffer from end-stage renal (kidney) disease, often as the result of high blood pressure and other conditions that can damage the kidneys. Native Americans are four times more likely than Whites to suffer from diabetes. Some of these conditions that can result in organ failure are best treated through transplantation and others can only be treated by this life-saving procedure.  Because certain blood types are more common in ethnic minority populations, increasing the number of minority donors can increase the frequency of minority transplants”.  For more information on minorities and organ donation, visit the Web site of the National Minority Organ Tissue Transplant Education Program at www.mottep.org or go to the Data section of the UNOS Web site or the Division of Transplantation in the Health Resources and Services Administration at www.organdonor.gov

The problem I have with UNOS’ effort is that you must go to them to get information.  Their attempts to bring information to anyone never mind minorities, is almost non-existent.  They depend on others to do that OPOs, Organ Procurement Organizations) with their own money.  In order to obtain UNOS information, you must have an intense interest in the subject, a computer and the knowledge to use it.  The minority organ donation issue is so important there should be a national campaign aimed at bringing information to the people who need it.  Note, though, that while UNOS may provide transplant information about minorities it provides nothing, absolutely no information that addresses genetic, cultural and language differences. Worse yet, I have found no emotion or compassion in any area of the UNOS website.  They are like the old “Dragnet” show, “Just the facts m’am, just the facts.”  I have never seen or heard of an impassioned plea from UNOS.  The OPOs make impassioned pleas but UNOS is far too sophisticated to stoop so low as to show some emotion.  The message they send is, “Here is the information.  If you choose not to seek it out and use it that is your problem.” 

Here’s an example of a cultural problem and one reason African Americans in particular are reluctant to become organ donors. Excerpt from American Renaissance News http://www.amren.com/news/news04/03/30/organdonation.html“The disparity between African-American and white organ donation is rooted in the historical distrust of the medical establishment by African-Americans and the disparity in health care between minorities and whites, doctors say. Dr. Devon John, a black surgeon at New York University Medical Center who specializes in transplanting the pancreas, blames the mystique surrounding the process of organ donation. Many minorities fear that they won’t get the best health care if they sign an organ donor card, or physicians won’t revive them if they are ill because they want their organs, he said. A lot of that wariness is the result of the history of discrimination in health care. In 1932, the U.S. Department of Public Health began the Tuskegee experiment. For 40 years, doctors withheld treatment from more than 600 African-American men suffering from syphilis to study the long-term effects of the disease.”

I find it interesting that UNOS likes to say that the national transplant waiting list is “colorblind,” that race information is not specified in the medical data.  Why not?  Maybe it should be.  Are they so afraid of sounding racist that they would ignore the importance of the racial issue? 

The solution to this and other organ donation problems lies in one word — COMMUNICATION.  While there is a lot more to good communication than I list here, here’s some advice, UNOS, from someone who has served as a communications consultant longer than UNOS has existed.  My eight points on how to communicate more effectively.

1. Audience oriented.  It must take culture and other elements into consideration.
2. Focused messages.  Knowing the audience means you know what then need to hear or read.  Messages should be repeated and there should be very few of them.
3. Funded.  You cannot depend on public service announcements to properly address an issue as important as this (even the military services buy advertising).
4. Trusted.  Well known, respected people must become leaders in the effort.  We can’t leave communication to anyone who answers the phone or is available at the moment (regionally your greatest resources are the OPOs, give them some help for heaven’s sake).
5. Frequent.  One day a year devoted to “awareness” is folly.  Every day should be one not of awareness but of increasing commitment.
6. Accurate.   We must acknowledge fears and concerns and speak to them with consistently factual information.
7. Compassion.  People must know the communicator cares, really cares.  Data communicates data.  People must combine that data with compassion.
8. Measurement.  The feelings and concerns of audiences must be regularly measured so that messages can be adjusted and new issues can be addressed.

 As a communications consultant my motto has always been, “If communication is not your top priority, all other priorities are at risk.”  That statement has never been truer than it is right now!  

UNOS — A Failure At Increasing Organ Donation