Category Archives: UNOS & Organ Donation

Official UNOS Response On Transplants for Non U.S. Citizens


As our readers know, I published a blog a while back questioning U.S policy on providing organ transplants to some non-U.S. citizens.  That blog raised even more questions and comments from our readers so I sent the following note to Anne Paschke one of the communications executives at the United Network for Organ Sharing, (UNOS) in Richmond, Virginia.  Below is my note to Anne followed by the official UNOS response.

Email to Anne Paschke

Hi Anne:

Some time ago I published a blog on foreign nationals getting transplants in the United States from American Donors.  I have only a passing familiarity with the issue and I”m hoping you can offer some clarification.  What is our official policy on non-U.S. Citizens getting transplants from American donors?  Does this policy only include foreign nationals with a passport or visa to visit the U.S. or does it also cover illegal immigrants?

My second question deals with the lost Angeles Times story of about five years ago where it was reported that the University of California, Los Angeles Medical Center transplanted four Japanese gangsters http://articles.latimes.com/2008/may/30/local/me-ucla30.  Did that happen and if so how did it slip through the “Blind” system.

When I receive your answer I will likely publish it but without editing.  All I really want to be able to do here is to offer my readers the UNOS point of view on these issues.

Here is UNOS’ response:

 Before addressing more specific issues, it’s important to note a few facts and principles that guide how the Organ Procurement and Transplantation Network (OPTN) addresses transplantation of foreign nationals.  United Network for Organ Sharing (UNOS) operates the OPTN under federal contract.

  • An individual transplant hospital makes the decision to accept and list any transplant candidate according to its own evaluation process and its own medical judgment.  The OPTN has no authority to approve or deny an individual candidate’s listing or influence a listing decision made by a transplant center.
  • Federal law and regulation that guides the OPTN directs that allocation policy be based only on medical criteria and, to the greatest extent possible, utilize objective medical evidence.  The OPTN cannot develop allocation policy that addresses what may be considered “social worth” factors about any candidate.  The OPTN does not have authority to enforce laws regarding any individual’s citizenship or residency.
  • As the United States is a world leader in many forms of medical treatment, historically we have not denied access to transplantation for non-residents.  In some instances, people who have sought transplantation in the U.S. would have no chance to receive a transplant of the needed organ in their home country.
  • Transplant recipients who are U.S. citizens or residents occasionally benefit from organs donated by citizens or permanent residents of other countries.  This may be in the form of organs imported from other nations (chiefly but not exclusively Canada) or from non-residents who become donors in the United States.  Also, although there are some exceptions, most countries that perform transplants do not limit their services to their citizens only.  The principle of reciprocity is important to maintaining goodwill and trust in organ donation.

Given these facts and principles, the OPTN has developed policies to accomplish certain objectives:

  • To allow non-residents or non-citizens access to transplant services in the United States, while generally ensuring that the great majority of recipients are U.S. citizens or foreign nationals
  • To ensure that no individual transplant candidate gets more or less consideration for available organs based on non-medical factors, including citizenship or residency
  • (In recent times) to study patterns of donation and transplantation from non-residents to guide the development of future policy and keep the U.S. transplant system consistent with international guidelines and recommendations.

Recent changes to OPTN policy have made it differ somewhat from the policy that existed in the early years of the OPTN.  We’ll outline what has been in place and then discuss the current requirements and initiatives.  We’ll also discuss the most recent national trends.

Prior requirements and policies

The early history of OPTN policy was based on guidance from an advisory task force convened after the 1984 National Organ Transplant Act was passed.  The task force debated the principles outlined above and recommended that allocation policy generally allow limited access for non-residents to be considered for transplants, with no difference in how the individual candidate gets priority for a transplant.  The task force recommended that the OPTN strive for a ratio of no more than ten percent of transplant recipients as non-resident foreign nationals.

The OPTN does not control the listing of individual transplant candidates and could not set an up-front listing limitation.  Instead, it established a process to review the number of transplants performed each year at each transplant program.  Initially, if more than ten percent of the people transplanted at the program were non-resident foreign nationals, the OPTN would send the program an audit letter.  The program would be asked to provide more information about the non-resident recipients transplanted and any reasons why the program exceeded the threshold. Exceeding the audit threshold was not in itself a violation of OPTN policy.  However, if the audit revealed a persistent and intentional pattern of transplanting a high number of non-residents, the OPTN could consider further review or action against the member.

In practice, even though some transplant programs exceeded the review threshold, none ever did so by a very high margin.  Generally the programs had sufficient reasoning for the number of transplants they performed for non-residents.  Many have been in areas serving large non-resident patient populations, and often their local area has a similar proportion of non-resident organ donors.  (Among non-resident recipients of living donor transplants, it’s fairly common for the living donor to be a relative or acquaintance from their home country and who travels to the United States to donate, thus not affecting the ratio of access for U.S. citizens or residents.)

In 1995, the OPTN reevaluated the threshold policy, in part because very few transplant programs met or exceeded the ten percent audit threshold.  The review threshold was lowered to five percent of recipients and remained so until last year.

For purposes of the policy, the OPTN only applied the review threshold to non-resident foreign nationals; resident foreign nationals were considered on the same basis as U.S. citizens.  There was no definitional separation of legal non-resident status (such as a medical or student visa, work permit, etc.) from an illegal status.

The OPTN has never had authority or resources to verify legal residency status among candidate listings.  Anecdotally, however, it appears that the majority of non-residents as defined by the policy have had legal non-resident status.

Recent policy

In September 2012, the OPTN adopted a substantial revision to policy regarding transplantation of non-resident foreign nationals.  The changes were approved in part to address what the OPTN is most able to enforce within its authority.  They were also intended to gather more information to study potential future policies that may be developed, as well as to reflect consensus guidance from recent international transplant conferences.  You can read the policy in its entirety on the OPTN website: http://optn.transplant.hrsa.gov/PoliciesandBylaws2/policies/pdfs/policy_18.pdf.

The new policy eliminates the threshold for a transplant program to receive an audit letter if it transplants a certain percentage of non-resident transplant recipients.  In its place, the OPTN will gather data on all citizenship information supplied by member transplant programs and develop a public report on listing and transplantation of non-U.S. citizens and non-U.S. residents at U.S. transplant hospitals.  This report has yet to be prepared but should be completed sometime this year.

The OPTN is also asking members to report more specific information about listing and transplantation of non-U.S. residents, including their country of residence and whether they traveled to the United States specifically for a transplant listing.  This information will be included in the annual report and will help identify any specific patterns or trends in groups of non-residents listed and transplanted.

We wouldn’t be able to answer any detailed questions about individual non-resident candidates or recipients listed or transplanted at a U.S. program.  This is due largely to the fact, noted above, that the OPTN is not involved in any hospital’s individual decision to list or transplant any candidate.  In addition, medical confidentiality statutes limit public disclosure of patient-specific information unless the person(s) involved provide their consent, or unless the information may be publicly accessible for some other reason.

Data and trends

Non-resident aliens account for roughly one percent of both transplant recipients and donors nationwide.  The rate (not the number) of non-resident recipients in the United States is roughly the same as the rate of non-resident donors.  The vast majority of both recipients and donors are U.S. citizens, with resident aliens accounting for another three to four percent.

In 2011 (the latest year with complete data available), more than 95 percent of transplant recipients in the United States were U.S. citizens (27,180 out of 28,537).  Resident U.S. aliens accounted for an additional 3.7 percent of recipients (1,071 out of 28,537).  The remaining one percent (286 recipients) were reported in some other category, most as non-resident aliens or non-citizens residing in the U.S.  (Some of the data are being reported differently now to conform to the new definitions mentioned above.)

Similar proportions exist for deceased donors in the United States.  In 2011, more than 95 percent were U.S. citizens (21,424 out of 22,518); another 3.9 percent were resident aliens (880 out of 22,518); and approximately one percent were reported in some other way, mostly as non-resident aliens (214 out of 22,518).

Similar proportions also exist among living donors.  In 2011, more than 95 percent were U.S. citizens (5,756 out of 6019); 3.2 percent were resident aliens (193 out of 6019); and 1.1 percent were reported in some other category, primarily non-resident aliens (70 out of 6019).

These ratios of transplants by reported citizenship have remained largely the same since 1988, the first full year of national data collection by the OPTN.  However, there were a substantial number of “not reported” fields in the early years of OPTN data collection; today the number of recipients with unreported citizenship/residency is virtually zero.  We would be happy to supply the entire table of data by citizenship by year upon request.

Among candidates currently listed for a transplant in the United States, the ratios are much the same (although citizenship is not currently reported for about 2.8 percent of candidates, possibly because they have only recently been added and the citizenship field is not yet filled in).  Of the candidates where citizenship is reported, about 93 percent are U.S. citizens, roughly 4.5 percent are resident aliens, and about two percent are listed in some other category.

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.

Advertisements

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.htmlThe 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


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.      

%d bloggers like this: