Category Archives: How the system works

OPOs — the Quiet Angels


faith quoteYou rarely ever hear about them, they don’t really seek publicity and when they do talk they always give the credit for their life saving activities to others.  The “They” of which I’m speaking are Organ Procurement Organizations (OPOs).  They are the “Middle man” so to speak, they are the ones who make all the arrangements to get transplantable organs to the people who need them.

When the National Organ Transplant Act was signed into law in 1984 it directed that organ allocation would be managed on a national basis through a public-private partnership.  The United Network for Organ Sharing (UNOS) is the private non-profit agency that works under contract with the U.S. Department of Health and Human services to coordinate their national list of people who need transplants with available organs.  UNOS has its headquarters in Richmond, Virginia.

OPOs were also mandated by the 1984 act and there are 58 of them working on the local and regional level.  They are charged with two tasks. 1) increasing the number of registered donors, and 2) coordinating the donation process when actual donors become available.  When they learn of the availability of an organ or organs, OPOs evaluate the potential donors, check the deceased’s state donor registry, discuss donation with family members, contact UNOS, run a match list, and arrange for the recovery and transport of donated organs. They also provide bereavement support for donor families and volunteer opportunities for interested individuals.

OPOs employ a variety of staff including procurement coordinatorsrequestors, specialists in public relations, communication, and health education, as well as administrative personnel.  All of these people are specially trained for their jobs.

LifeSource is the OPO that serves more than 6 million people in communities across Minnesota, North Dakota, South Dakota and portions of western Wisconsin and I know them well.  As a consultant I worked closely with them for many years.  I can personally vouch for their expertise, compassion and effectiveness because I’ve seen them in action.

 

To be employed at LifeSource is not like employment elsewhere.  The people there don’t go to work every day, they embark on a journey to save lives.  That’s the attitude that permeates the entire organization.  Everything they do, every job in the organization is focused on one thing, saving lives. All you have to do to know their culture is to look into the eyes of any one of their people when they are talking about what they do and you will feel the sincerity and sense of mission.

Nearly three years ago the New York Times did a story on LifeSource. It is a magnificent piece that clearly illustrates what an OPO does and how their work affects each and every one of us. Once you read it, you’ll have a new understanding and appreciation for what these marvelous people do.

Read “After Death, Helping to Prolong Life” by clicking on this link  2012 New York Times article

Bob Aronson of Bob’s Newheart is a 2007 heart transplant recipient, the founder of Facebook’s over 4,000 member Organ Transplant Initiative (OTI) 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.  You can register to be a donor a thttp://www.donatelife.net.  It only takes a few minutes.

Foreigners are Getting American Organs…Should That Be Allowed?


From time to time we hear of a non-U.S. citizen getting an organ transplant at an American medical center having received the organ from the American donor pool.  Is that proper?  There’s more of it going on than you may suspect and transplant centers don’t talk about it much.

While I am the first to admit that my research of this topic is inadequate it still raises legitimate questions.  Why do we allow non-U.S. citizens  to get transplants here?  Shouldn’t American organs go to Americans?  Should donors be able to designate that they only want their organs to go to fellow citizens?

No one has made much of a fuss about our organs going to citizens of other countries until the Los Angeles Times  investigative report in 2008 uncovered the story of four Japanese gangsters who got liver transplants at the University of California, Los Angeles Medical Center.  That story put a burr under a lot of American Saddles but it still took the United Network For Organ Sharing (UNOS), which often moves at breakneck glacier speed, four years to decide to do something about it.  Just this year they decided that transplants involving recipients who are not U.S. citizens or residents will get closer scrutiny according to American Medical news” http://www.ama-assn.org/amednews/2012/07/16/prse0718.htm

“Under the policy adopted by the UNOS board of directors in late June, any transplant involving a recipient who is not a U.S. citizen or resident can be reviewed by the Organ Procurement and Transplantation Network  (OPTN).

Transplant centers will have to provide data to the OPTN. That information will include a recipient’s country of origin, the reason for seeking transplantation in the U.S. and how the procedure is being financed. Data on transplantation by citizenship status will be publicly reported.

Centers will be barred from entering contracts with foreign agencies or governments to provide transplantation services. Transplant centers must abide by OPTN/UNOS rules in order to be paid by Medicare.”

I don’t know about you, readers, but this report doesn’t really tell me what a review by OPTN could result in.  Like…could they deny the transplant?

Later in this post you will see more specifics but in the decade from 2000 through 2010 685 non-U.S. citizens got organ transplants here with organs coming from American donors.  What is bothersome to me is that when we sign up to be donors I think we do so assuming that our organs will go to fellow citizens.  That apparently is not always the case.

When you consider that about 20 U.S. Citizens die every day because there are not enough organs is it right that a rich foreigner (the great majority pay cash) can come here and take an organ that might otherwise have gone to one of us?  Why is there a rule that American Transplant Centers can list foreigners but they can make up no more than 5% of any center’s list?  And — is it true that some organs are given to illegal aliens?  We’ll attempt to answer those questions and more in this post.

Before we more completely address these important questions it is important to frame the issue of organ allocation and transplantation in the United States.  As much as we dislike the idea the fact is that we must ration human organs.  The gap between available organs and those who need them is so incredibly wide someone has to decide who does and doesn’t get them.

The most burning of questions in organ transplantation is this one; Who on the waiting lists should get transplants first: patients in the greatest need or those most likely to benefit?  Example.  If a choice has to be made between a 72 year old man has been diagnosed as almost immediately terminal unless he gets an heart transplant and a sick but much healthier 35 year old mother of three; who should get the heart?  It could be logically argued that the mother should get it because while not as sick as the man she is more likely to live much, much longer and therefore benefit the most.

As of this writing there are 116,835 candidates on the U.S. transplant waiting list.  From January through October of 2012 there were only 23,363 transplants done with the organs coming from 11,659 people.  It is obvious with virtually no study of the numbers that the gap between available organs and those who need them is monstrous.  And…think about this.  In those ten months from January through October of all the people who died in this country only 11,659 of them were acceptable donors (acceptable meaning among registered donors this number had organs healthy enough to be transplanted).

Determining who gets an available organ is not easy and the process is said to be “Blind” meaning patient conditions, age and other medical factors are known but not names or social status.  It is important to understand, too, that there are over 150 transplant centers in the United States (complete list here http://tinyurl.com/78qfesx) and each is allowed to decide which of their patients is placed on the national listing. Where there are general guidelines on who can be listed, there is no uniformity which has resulted in each transplant center developing their own criteria for adding patients to the ever growing number.

So how do you get on the transplant list anyway?  Well, to start you have to have a Doctor who thinks you are sick enough to be referred to a transplant center, but there are many factors involved one of which is what bioethicist Art Caplan calls the “Wallet biopsy.”  You have to prove that you can pay not only for the procedure but the follow-up care and the anti-rejection drugs you must take for the rest of your life.  Those drugs can be very expensive…in excess of $1,000 a month..

Even if patients have enough money to qualify for a transplant, the transplant center must also deem them good candidates psychologically and socially and the criteria vary widely.  Among the factors that transplant centers weigh as contraindications are not having a spouse or relative or close friend as a caregiver, having suffered a recent death or loss of someone close to you, having a history of criminal behavior or mental illness like schizophrenia or depression, a history of alcoholism or drug dependency, having attempted suicide, having a personality disorder and mental retardation.

With all those qualifications it is the first one, the ability to pay, that may determine your success in getting listed and then getting an organ.  So when foreigners come to the U.S. with a boatload of cash it is possible that some transplant centers will make every effort to accommodate their needs including manipulating numbers so that they stay within the 5% restriction.

But…let’s look at the 5%.  The number only indicates a limit on foreign transplants it does not say that 5% of all transplants go to foreigners and with the New UNOS rules the number of foreign transplants could diminish.  My research on this subject revealed that from 2000 through 2010, 685 non-citizen, non-residents (aka foreign nationals) were given deceased donor kidney transplants in the US.  http://livingdonorsarepeopletoo.com/kidneys-given-to-non-us-citizens-non-residents-2000-2010/

Now what about that question on illegal immigrants getting tax paid organ transplants in the U.S.?  Research indicates that while it has happened it is rare and in the case of a 2012 kidney transplant at Loyola University in Chicago the transplant was funded by Loyola.  http://articles.chicagotribune.com/2012-12-09/news/ct-met-illegal-immigrant-kidney-transplant-20121209_1_illegal-immigrant-kidney-transplant-liver-transplant.  Now, one could argue that Loyola money is private money but at the same time the school certainly receives tax dollars for a myriad of uses so the use of tax dollars, however tangential, is certainly possible.  More importantly, though, it is clear that an American donor’s organ was given to an illegal alien meaning that an American Citizen did not get it.  To me…that’s just not right.

I find it disgraceful that any American citizen should be denied an organ transplant for any reason but to be denied an organ because it went to someone from another country just doesn’t seem right.  I did a considerable amount of “googleing” to find a satisfactory explanation for the practice and came up empty handed.  Having been on a list and knowing of the shortage scared me.  Had known that someone from another country might get an American organ before I did, would have terrified and enraged me.  I just don’t think its right.

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.

Ethicist Needs Ethics Transplant


In an op-ed piece on MSNBC Arthur Caplan a University of Pennsylvania bioethicist suggested that Vice President Dick Cheney received a heart transplant because he was rich and influential.  Caplan implied, too, that Cheney at 71 was too old for a transplant and that the heart should have gone to a younger person.  I responded with this comment.

Up until today I had some respect for Dr. Caplan but upon reading his uninformed and arrogant musings on Vice President Cheney’s heart transplant and senior citizens, I not only lost all respect I find him pathetic and in need of an ethics transplant. 

I am a long time Democrat, a very vocal opponent of Mr. Cheney and everything he stands for and a transplant recipient who got a heart at age 68 and I’m neither rich nor influential yet I believe the former Vice President got his heart in the same fair and balanced manner in which I got mine.  In that sentence I just negated all of Caplan’s arguments.

Had Arthur Caplan taken a little bit of time to understand the donation/transplantation process he might have a different story.

As much as I dislike Dick Cheney he got his heart fairly and am convinced that his wealth and influence had nothing to do with it. The only discriminatory factor that prevailed is that you must be able to pay for a transplant whether privately or through insurance. Yes, that leaves a lot of people out of the mix but that’s another argument.  He was insured just as I was. Had we matched bank accounts I would have come out on the short end but it was insurance that paid not private wealth.

The United Network for Organ (UNOS) Sharing in Richmond, Virginia (a site I’ve visited many times, has Caplan?) is a U.S. government subcontractor that coordinates all organ transplants in the United States.  It has done so since its establishment under the National Organ Transplant Act (NOTA) in 1984.  Its computer system tracks and continually updates the national transplant list which includes nearly 114,000 Americans.  It is a very sophisticated process and it is blind.  The information in the system does not contain anyone’s name or rank or social standing or wealth it has medical information and the location for each patient.

Having been on the national waiting list I think I’m familiar with the process of how you get there and it is not easy.  First you must see a specialist in your disease at a transplant center where you are subjected to battery of tests to determine two things 1) are you a legitimate candidate for a transplant and 2) is it likely you’ll survive after the surgery.  If the physician determines you meet those criteria he or she presents your case to a hospital’s transplant committee and, if they agree, the patient’s information is sent to UNOS for listing.  Please note, you cannot get on the list unless a specialist physician certifies that you are dying, that a transplant is a last resort to save your life and that you will survive the surgery.

In the United States there are 58 Organ Procurement Organizations (OPOs) they are the federally mandated groups that work with transplant centers  and UNOS to identify potential donors and then with families and hospitals to coordinate the recovery of the organ and its transportation to the site of the recipient.  They have no knowledge at any time of who the recipient is.

Once it is clear that there will a donor organ the process begins to match blood type, tissue, size and other factors.  The match must be as close as possible to in order to limit rejection of the organ by the host body (once transplanted rejection is further limited by powerful drugs). While the intent is to get the organ to the sickest patient, it doesn’t always work out that way because sometime the sickest patient is not a good match for the available organ.

Here’s an example.  I had my transplant done at the Mayo Clinic in Jacksonville, Florida.  My heart came from South Carolina.  I don’t know all the details but here’s what likely happened.  First the heart was offered within the immediate area served by the OPO but there were apparently no good matches.  Then it was made available to outlying areas and they found me in an area that was in the jurisdiction of a different OPO altogether.  I was not the sickest (wasn’t even hospitalized) and certainly at age 68 was not the youngest, and I know I was not the richest but I was a match and I got the heart.  It is just as likely that the same thing could have happened for Mr. Cheney. 

It is also likely that had Cheney not gotten the heart, no one would because it wasn’t a match.  I doubt that someone else was deprived of an organ because Mr. Cheney got it.  Also, there is the question of distance.  An organ will only survive for a limited amount of time once removed from a body.  It must be transplanted as soon as possible.  Mr. Cheney was likely the best candidate within the range of the survivability of the organ. 

 And finally.  It may not be important to Dr. Caplan that those of us over 65 have a chance at getting a transplant and living several more years but it is to us.  How dare he imply that we seniors aren’t worth the time, money and effort to save.  His arrogance and lack of compassion reflects poorly on his ethical character.  How can the ethicist say that a certain segment of the population is “disposable.”  Is that ethical behavior?   Better unlock that ivory tower door Dr. Caplan.  Let some fresh air in.

Bob Aronson, a 2007 heart transplant recipient is the founder of Facebook’s 1700 member Organ Transplant Initiative and the writer of 110 blogs on donation/transplantation issues on Bob’s Newheart on WordPress. 

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 a PowerPoint slide show for your use free and for use 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.

 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.

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