Blog Archives

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.

Advertisements

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.

Hepatitis C, Peter and Ashley. A Love Story.


For the past week or so I’ve been writing about Hepatitis C, mostly in clinical terms.  Today we begin to tell the human side of the story, the side that shows how devastating this disease can be and how it can bring out the very best in people.  It is the story of a Boston couple — each has the disease.  One far more seriously than the other.

Peter and Ashley Curran are my friends as a result of Facebook and Organ Transplant Initiative .  They are two of the dearest people I know not only because of how much they love each other but also because they are friends to all who are suffering from Hepatitis C, their caregivers and to everyone else in the donation/transplantation community.  These are two genuine, kind and loving people who face incredible adversity on a daily basis and never ask for anything.

The story you are about to read was written by Ashley at my request about her beloved Peter.  She writes only of Peter’s disease but doesn’t even begin to touch on the many other hardships they have faced nor those they are facing on a daily basis.  Ashley and Peter don’t have much,  but they have each other and by God in my book that makes them the richest people on earth.

If ever there was a story of love and compassion and of giving yes, giving (Ash and Peter give till it hurts) it is the Curran story.  Please, if you pray, say one or two for Peter and Ashley.  God gets distracted once in a while with all that’s going on in the world so let’s give him a nudge and remind him that Peter and Ashley could use a little of his grace.  It is people like Ashley and Peter who will get left behind as our national safety net gets ragged, torn and frayed.

More people in the United States now die from hepatitis C each year than from AIDS, according to a new report from the Centers for Disease Control and Prevention. More than 3.2 million Americans are currently infected with hepatitis C and the really bad news is that most people who have it don’t’ know it.

Let’s start with a definition.

According to the Mayo Clinic Hepatitis C is an infection caused by a virus that attacks the liver and leads to inflammation. Most people infected with the hepatitis C virus (HCV) have no symptoms. In fact, most people don’t know they have the hepatitis C infection until liver damage shows up, decades later, during routine medical tests.

Hepatitis C, Peter and Ashley.  A Love Story.

Written by Ashley Tenczar Curran

“You are going to need a transplant, your liver function is at about 10 percent”. I heard the words over the phone as my husband Peter and I were having our morning coffee. He had gestured for me to come over to the phone to listen in, and the words will never be extinguished from my mind.  I did not know then, in my shock and disbelief, that a shadow had fallen.

Peter and I met in 2000, a year that I was finally leaving my devastating drug addiction behind, and starting over. I had moved into a rooming house in South Boston, where Peter had been a tenant for about 7 years.  I wasn’t looking for love, especially in THIS wrong place. An overcrowded, “6 adults sharing the same bathroom” illegal “sober house” as it was advertised had enticed me because it was in good old “Southie”.

As I moved in, and was trying to carry my computer with one hand, doing a disastrous job of it, I heard a voice say “need some help?”  I realize how stupid this sounds, but I married Peter that instant.  He was 20 years older than me, and not my type at all. Laid back, calm, patient, and not overly talkative. I am the opposite.  He helped me plug in my computer, and left. I had been hit by some type of Divine thunderbolt, and I had not felt that feeling in a very long time.   We were facing insurmountable odds. He was just getting clean, tired of being “sick and tired”, and I was fresh out of a treatment program.
By all reasoning, we should have spent one week together and never seen each other again.

We should have died when we relapsed one time, several months after we met, to “try it one more time”, as if we had not destroyed out lives enough.  All I remember is waking up with a needle in my arm, and seeing Peter on the floor , with a needle in his arm.  We talked the next day, and loved each other enough to realize that we would lose each other if we used even one more time.  We finally, after some 15 years pursuing recovery, were unselfish enough to lay it down, and never return.

But the past always comes into the present, it is inevitable. I had been diagnosed with Hepatitis C, like most people I know, young and old, who have ever used a needle while doing drugs.  It is an epidemic of unimaginable proportions.
My virus was “undetectable” and remains that way to this day, 12+ years later.  Peter did not fare so well.

When we first started dating, I was amazed to listen to stories from other addicts, both active and in recovery, telling me that Peter is the kindest and most patient person they have ever met. I say this NOT for the purpose of this story, but my husband has some kind of way about him that instantly puts people at ease.  When my best friend Michelle overdosed in the room above ours, we tried to bring her back, and I wanted to kill the man who had given her the dope. Everyone who was there wanted to hang this man.   Everyone except Peter. He got the man some soda, gave him a cigarette, and sat him down to ask him what exactly had happened.

I remember the guy saying “Why are you being so nice to me?”

I have tried to model my behavior after my husband’s, being honest almost to a fault, and at the same time I am angry that I am not the one who is sick, that he , the patient and loving one has to be the one to go through the horrors of 22 medications several times a day, 3 years so far on the transplant list, (UNOS), and very little family support  (They were attentive and supportive at first, but now that the drama has settled, and they know it could be many more years before Peter gets his Gift of Life, they have gone on with their lives, and do not even invite him to family events anymore)
Peter does not get angry.

This is how I know that God will give him a transplant. This is not wishful thinking, because if you knew Peter, truly knew him, then you would know this also. He has a higher purpose, and God is not done with him yet.  He met a nurse, albeit a “disgraced” one, (me), who is 20 years younger than him, and who loved him from the first time she clamped eyes on him. He is my “Brad Pitt”, even in his weakened state.  I find I love him more , the sicker he gets.  The fight he puts up, the appointments, 4 in the past 2 weeks, and the humility he shows, the polite character he prides himself on, causing doctors and nurses to say over and over again “I wish I had 100 of HIM!”

Hepatitis C is overlooked. That is a FACT. So many young people are being diagnosed right as I type this, and the organ transplant lists, particularly the liver, are getting longer and longer. People are dying from a disease that is completely preventable, and that has a vaccination available!  Soon we will find that our young people are gravely ill, (we can see it now), and that scares me.  Peter said if he had a choice, he would give his liver transplant to a young person, as he has lived his life.

A lot of people think that “junkies” don’t deserve transplants, because “they did it to themselves!”

Well, to that I say “so cancer patients who chain smoked for years don’t deserve chemo and radiation, and costly experimental procedures because THEY “did it” to themselves?  So many diseases ARE the result of something “we have done wrong”.

The real shame is the stigma that society attaches to drug addicts. One person told me “taking pills is ONE thing, but putting HEROIN in your ARM with an IV? That is ridiculous!”   More people die from a combination of narcotic pills and another type of pill, typically a “benzo” like Valium than do from a heroin overdose (I.E. Oxycontin).

I don’t know what the future holds for my husband, or, for that matter, for me. But every day I remind him that God loves him, and I love him. We tell each other every day. Though we did that before he got sick, it resonates even louder now, because I could, in reality, be counting down the days that I get to hear his voice, and see his chest rise and fall, knowing he IS breathing, as I do so often.

Please consider being an organ donor.  There are so many people suffering like this, and putting their best foot forward to patiently wait for their turn. My husband, I believe, is the most patient “patient” that Beth Israel Hospital has ever had.

-0-

After three years on the waiting list, Peter and Ashley are considering looking for a living liver donor.  If you have an interest in helping this couple you may contact them directly on Facebook or leave a message here and I’ll make sure then get it.  Please everyone, if you pray,say one for Peter and Ashley.

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.

UNOS CEO: Study Could Redefine “Medically Suitable” Donors


On August 11, I sent a letter to Walter Graham, CEO of the United Network for Organ Sharing (UNOS) asking what UNOS was doing or was going to do to increase the supply of organs. My letter noted that the number of transplants performed each year has plateaued at about 28,000 while the number of people on the list continues to grow.  Today there are 114,899 people waiting and so far this year there have been 11,469 transplants from 5,677 donors.   As you can see, the gap continues to widen.  With only four months left this year we may fall far short of the 28,000 number.

Below you will first find my letter to Mr. Graham, followed by his response.  You can decide if he responded to my concerns and most importantly, your concerns about how our national donation/transplantation system is managed.

August 11,2012

Walter Graham

Chief Executive Officer

United Network For Organ Sharing

Richmond, Virginia

Dear Mr. Graham:

You might remember me as a Minneapolis, Minnesota based communications consultant that worked with UNOS in the 90’s.  During that period I was diagnosed with dilated cardiomyopathy and subsequently had a heart transplant at the Mayo clinic in Jacksonville, Florida in August of 2007.

I am writing not as a former consultant but rather as a very grateful heart transplant recipient, founder of Facebook’s nearly 2500 member Organ Transplant Initiative (OTI), author of over 120 blogs on donation/transplantation issues (www.bobsnewheart.wordpress.com)  where we have 100,000 readers and writer/producer of three videos on organ donation. I am a very active advocate for organ donation and have been for many years.

I’ll get right to the point.  I have a growing concern about the Inability of the altruistic system to meet the demands for organ transplants and UNOS’ reluctance to make or even recommend significant changes to the system.

I am quite aware of all the ethical and other arguments forwarded by UNOS for rejecting changes that would include presumed consent and donor incentives/compensation among others.  I am puzzled as to how UNOS can find these suggestions unethical or unworkable but has made no statement about the ethics of allowing people to die due to the failure of the altruistic system to generate enough transplantable organs.  How can it be ethical to allow an inadequate system to prevail?

Having been on that list I have first-hand experience with the depression that accompanies it, knowing that the government contractor that is funded with my tax dollars is doing little beyond promoting altruism to significantly increase the number of available organs.  It is discouraging and depressing for those on the list to continually hear that every option other than altruism is either unethical or unworkable.

I am hoping that you can offer some hope that I can pass on to members and other interested parties that the gap not only is closing but will close and soon.  Please offer some explanation other than renewed efforts at increasing altruism of just what UNOS is doing and will do to help those who are languishing on an ever growing list of people who need transplants.  Please prove me wrong.  I would be most grateful to see clear, compelling evidence that the altruistic system can work and is working.

It is almost 30 years since the National Organ Transplant Act (NOTA) was implemented..  I think that is plenty of time to determine if a system works.  Unless you can prove otherwise, It seems clear that with 114,000 people listed and only about 28,000 transplants done every year despite intense and noble efforts at increasing donation rates, altruism alone cannot meet the demand – ever.  .

Please respond as soon as possible.  I plan to publish my letter to you and your response side by side.

Thank you for your consideration and time

Bob Aronson

Return letter from Walter Graham

Received on August 22, 2012

Dear Bob:

Thank you for your letter, and yes, we remember your valuable contributions to us as a consultant in the 1990s.  We are glad you continue to do well with your transplant and engage the public in this vital cause.

Your concern regarding the shortage between available donors and the needs of waiting candidates is widely shared.  Our ultimate goal and fondest hope is to be able to provide transplants for all candidates in need, to prevent deaths and needless suffering while waiting.

As you may recall from your work with us, the primary mandate of UNOS as operator of the national Organ Procurement and Transplantation Network (OPTN) is to allocate organs from deceased donors equitably among transplant candidates.  Other significant roles, as specified in federal law and regulation, including maintaining a clinical database on all donors, candidates and recipients; monitoring compliance with OPTN policies; and investigating donation- or transplant-related issues that may pose a risk to the health and safety of transplant patients, living donors or the public.

Promoting organ donation is interwoven among all of our responsibilities, and transplantation depends entirely on the public’s willingness to donate.  That said, managing the organ donation system is not a fundamental mandate that federal law or regulation has assigned to us.  Our essential responsibility is to make sure that available organs are used in the most responsible and effective way possible.

State and federal law governs the process of donation in the United States.  Any change to the current voluntary nature of donation, whether that would involve preferred consent, financial incentives, preferred status or other means, would involve a public initiative to amend the law.  UNOS, as a corporation, has declared its support of careful study of potential incentives, financial or non-financial, that would encourage donation while respecting individuals’ freedom of choice.  Such study may involve legislative efforts to suspend the law to allow examination of the results.  As a federal contractor for the OPTN, UNOS cannot develop policies not supported by the law or expend limited resources lobbying for legislative changes beyond the OPTN’s mandate.

One of the fundamental questions UNOS is seeking to answer has to do with the potential number of persons who could qualify for deceased organ recovery.  Our Center for Transplant System Excellence is conducting a Deceased Donor Potential Study. This study will identify the total number of medical cases in which persons could be deceased organ donors regardless of issues of consent. The results of this study will provide a better understanding of what is possible. The merits of whether a system based on altruism is the best approach could then be understood in the context of what is possible. It may well be that the number of medically suitable cases as currently defined is not adequate in any circumstance.

Many people are convinced that the delicate nature of donation may be adversely affected by negative connotations or perceptions generated by controversy over debates about changes to the underlying legal system such as presumed consent. That being the case, it is prudent to pursue the DDP Study to learn what the potential might be before considering whether to advocate for a fundamental change.

Among key strategic goals for the OPTN are increasing the number of transplants performed and optimizing post-transplant survival.  Even with the current supply of donated organs, we can increase utilization of organs and enhance survival by better matching available organs with candidates who are the best long-term match.  In promoting organ donation, we actively support efforts such as those of Donate Life America, which has recently announced more than 100 million Americans have formally registered their wish to donate organs and tissues and has set an ambitious goal of 20 million new donor commitments this year.

We all agree a higher rate of donation is essential to save lives and relieve suffering of men, women and children anxiously awaiting an organ transplant.  UNOS and the OPTN are dedicated to helping save and enhance lives through organ allocation.  Whether society may be ready to adopt a new model for the process of organ donation is an important discussion that would involve society as a whole and active support of state and national lawmakers.

Walter Graham

CEO

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.

Journalistic Terrorism


I am a heart transplant recipient and a registered organ donor.  Today my new heart aches for the over 113,000 people on the national transplant list and their families because an irresponsible writer just told them their lives are unimportant and that they should go home and die.  I know what it’s like to be on that list.  I know firsthand the terror associated with the fact that because less than half of all Americans are organ donors some patients will die waiting.  In 2010 over 6,000 died and now the shortage of donor organs is even greater with the likelihood that the fatality list will go even higher. With the publication of a “don’t become an organ donor” column in the Wall Street Journal, the author and the paper have displayed a heartlessness I thought could not exist.  I would rather not believe that anyone would seek financial reward at the cost of human life but that’s what author Dick Terisi and Wall Street Journal owner and publisher Rupert Murdoch have done.  It is what it is – Journalistic Terrorism.

The irresponsibility of Terisi and Murdoch is going to cause a lot of people to die.  The story in question claims that physicians allow and even facilitate the death of patients in order to retrieve their organs for transplantation.  Not only is that charge wrong, it is reckless and life threatening.  The teams of people in hospitals that care for patients, however ill, are not connected nor do they report to the very specialized transplant teams in the same organization.  And – not all hospitals even have transplant capabilities.  There are 5, 754 accredited hospitals in the United States but only 242 of them are transplant centers.  Terisi makes it sound as though all hospitals are transplant centers with surgeons hovering over patients, scalpel in hand ready to retrieve organs.  That picture is not only distorted it is the product of the overactive imagination found in most fiction writers.  The problem is Terisi passes himself off as a knowledgeable reporter of actual events.  Let me be very blunt.  He knows better but lying about the process sells more books and that’s his bottom line.

His major point is that Physicians are cavalier in their approach to proclaiming brain death so that they can hurry the process of recovering organs for transplant.  Fact:  the procedure for determining death prior to recovery of organs is rigorous, thorough and as exact as medical science can make it.  My previous blog on the subject “Death by Journalism” explains the process for declaring brain death in great detail.   This story is a dramatic example of what I call “Junk” science.  He uses anecdotal evidence and off the cuff remarks of a single physician to make his point and calls it evidence.

Some readers are going to believe this nonsense and refuse to become organ donors.  Others, who are donors, may decide to reverse their decision.  In either case people will die as a result because the critical shortage of organs for transplant will become even more critical.  Terisi and Rupert Murdoch’s Wall Street Journal must be held accountable for this reckless endangerment of human life.  This time there is a cost for having a “Free” press and the cost will likely be the deaths of a good many people…just so an author can sell some books and a publisher can sell a few more newspapers. Shame on them!

If you want the facts about organ donation/transplantation and associated issues here are some links.

* Fact sheet.  Myths about organ donation (this link directly addresses the subject of care of dying patients)  http://tinyurl.com/7xngpet

* 25 facts about donation/transplantation National Kidney Foundation http://tinyurl.com/8o6uq2

* How the transplant system workshttp://tinyurl.com/7rccn3u

* UNOS facts about Transplantation in the U.S.  http://tinyurl.com/7bkmaft

* Transplant Recipients International Organization (TRIO) General information http://www.trioweb.org/

You can also read more about a wide variety of donation/transplantation issues on my blog Bob’s Newheart on WordPress www.bobsnewheart.wordpress.com

Bottom line.  We can’t stop people like Terisi and Murdoch from publishing lies and distortions but we can mitigate their effect by speaking up and letting the truth be known that organ donation threatens no one and saves thousands of lives.

Every organ donor can either save or enhance the lives of up to 60 people.  That’s a fact!  Tell the story and tell it often.  I’m here to write this piece because of an unselfish organ donor.  I will not let his action or his character be defiled because of the greed of a writer and publisher – I hope you will join me in honoring all donors and their families by spreading the word that organ donation saves lives.

Lodge your protest at Wall Street Journal Contact:
Online: onlinejournal@wsj.com
1-800-JOURNAL (1-800-568-7625)
Outside the U.S.:1-609-514-0870
Monday – Friday: 7am to 10pm ET
Saturday: 8am to 3pm ET

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.

 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.

 

Donation to Transplantation — How it Works


It is only fitting that on the eve of the fourth anniversary of my heart transplant that blog 100 on this site addresses  the donation/transplantation process.   My undying thanks to my donor, his family and my caregiver wife for giving me these extra years.  Bob Aronson

Joel Newman is the Assistant Director of Communications for the United Network for Organ Sharing (UNOS).  UNOS coordinates all organ transplants in the United states and is located in Richmond, Virginia.  In response to my request for a guest blog on how the donation/transplantation system works, Joel wrote the following.  Our sincere thanks to him and all the dedicated people at UNOS for their life saving work and for allowing us to use them as a resource.

How It Works

By Joel Newman, UNOS

Since the first successful organ transplant in 1954, more than 500,000 transplants have been performed in the United States.  About 250,000 transplant recipients are alive today, and most enjoy a greatly enhanced quality of life as a result of this life-giving therapy.

Under federal contract, UNOS (United Network for Organ Sharing) maintains an extensive national transplant network to assist medical professionals in the recovery and allocation of donated organs.  This network is called the Organ Procurement and Transplantation Network (OPTN).

This is a brief overview of the processes involved in listing transplant candidates, organ donation and organ allocation.  We at UNOS are glad to address more specific questions.

 

Transplant Evaluation and Listing

To be considered for a transplant, a person approaching end-stage organ failure must be evaluated at one of roughly 250 transplant hospitals nationwide.  A transplant program’s medical team will address issues such as:

  • Will a transplant effectively treat his or her disease?
  • Does this person have other medical conditions that would complicate his or her care?
  • Can this person participate in his or her own care by taking medications on time, following medical advice, keeping appointments, etc.?  Does he or she have family or caregiver support to assist if needed?
  • Does this person qualify for insurance for transplant costs?  If not, can he or she raise funds to defray expenses?

The transplant team makes individual decisions according to its medical judgment.  If the program agrees to accept the person as a transplant candidate, it will submit a set of basic data to the OPTN.  The OPTN maintains a highly secure, continuously operated computer database to compare medical and logistical information about transplant candidates at hospitals with that of available organs from deceased donors.

An issue sometimes raised is whether a person’s past history of substance abuse, non-compliance with medical care or other self-destructive behavior may count against the possibility of listing.  While this remains a medical judgment of the transplant team, their emphasis is not on past behavior but current and likely future status.  If the team is reasonably assured that the person has ended harmful behavior and is not likely to resume that behavior once transplanted, they would be more likely to list the person as a transplant candidate.  UNOS is not involved in any program’s decision to list a transplant candidate or remove a candidate once listed.

Organ Donation and Recovery

Organ transplantation depends entirely upon the generosity of one human being to help others through the gift of organ donation.  While this gift may involve a living donor, we will focus here on donation from those who have recently died in a hospital and who meet criteria for donation.

An organ procurement organization (often called an OPO) is responsible for several key functions in the donation process, including:

  • identifying potential donors
  • documenting donation consent
  • collecting key medical history and lab test results to assess organ function and risk of any diseases that might be transmitted to recipients
  • entering donor information and organs available for matching into the OPTN database
  • assuming a transplant center accepts the organ offer, arranging for logistics of organ recovery, preservation and transportation

Most deceased organ donors in the U.S. encounter brain death (a complete and irreversible loss of brain function, determined by physicians not involved in the donation process).  For such potential donors, respiration and circulation can be maintained artificially for some time (commonly 24 to 48 hours) after brain death has been pronounced.

In other instances, donation may be possible for some people who die in a hospital setting from cardiorespiratory failure.  The person’s treating medical team (in no way involved with organ donation) must conclude that he or she cannot survive but will die of cardiac failure instead of brain death.  The next of kin must agree that death is imminent and that they will agree to end supportive care.  Only then, if the individual meets other criteria for donation, would donation be considered.

Surgeons with specific training and experience remove the organs to be transplanted.  Each organ is packaged in sterile conditions and carefully labeled with a unique identification number to be matched with the recipient when it arrives at the transplant hospital.  The organ cannot be frozen, as this would cause permanent damage to the blood vessels supplying it.  It is preserved in a series of sterile containers that are then surrounded by a solution of wet ice.

Transportation arrangements for deceased donor organs will differ according to the type of organ, the circumstances of the donation, and the distance between donor and recipient hospital.  If they are to be used within a local area, ground transportation (ambulance or chartered vehicle) may be used.  Hearts, lungs and livers, commonly used within a few hundred miles of the donor location, often travel by charter air flight along with a team from the receiving transplant center.  Kidneys have the longest preservation time (commonly up to 36 hours from recovery).  If they are being transported over long distances, they may travel on commercial flights and be delivered to and from the airport by a courier service.

Organ Allocation

Federal law and regulation charge the OPTN to maintain an allocation system that promotes equity and efficiency, minimizes wastage of transplantable organs, and allows individual medical judgment in evaluating and accepting organ offers.

Candidates do not have a designated “ranking” on a waiting list until the OPO enters data for a given organ offer.  The characteristics of each offer may be different in terms of donor size, blood type and location, thus the rank-order of potential recipients will be unique to each offer.

The OPTN computer system generates a “match run” list.  This displays which potential recipient is to be offered each organ in sequence.  Using the match run results, a specialist at either the OPO or UNOS notifies the medical teams for the highest-ranked candidates and provides additional detail to help the team evaluate the organ offer.  This initial notification is usually sent electronically via computer or text message, but the transplant program may request additional information by phone.

Once the transplant team for the highest-ranked patient is notified, they have one hour to review detailed information about the donor and the organ and either accept or refuse the offer.  If the organ is accepted, arrangements are made for recovery and transportation.  If the transplant program declines the offer, it will note a refusal reason back to UNOS.  The offer process will continue either until the organ is accepted or until no one can accept it in time to arrange a successful transplant.

The OPTN matching system is programmed to reflect many factors.  These include medical data known to affect the likelihood of a successful transplant and ethical principles to promote fairness and public trust in the transplant system.  Public trust is especially vital, for if people perceive that the system is unfair they may choose not to support it through organ donation.

In general, OPTN organ allocation policies seek to balance two overarching principles.  One is equity – ensuring that each candidate has an equivalent opportunity to be considered for organ offers according to his or her specific need.  The other is medical utility – ensuring that the system is able to transplant as many people as possible and with the best possible survival.

In theory, the candidate who is first on the match run list for a given organ should be both in great need of the transplant and have a reasonable chance for long-term survival and quality of life afterward.  The specific policies used to generate the computerized match run are weighted statistically to maintain a balance of equity and utility.

While the specific weight of each factor varies according to each organ type, common factors considered in the match run include:

  • how well the donor and potential recipients match in terms of blood type, body size and immune system compatibility
  • (for heart, lung, liver and intestinal organs) the candidate’s medical urgency, with sicker patients getting highest priority
  • the relative distance between donor and recipient (local recipients are considered before more distant patients, to minimize time the organ must be preserved and provide the best chance for a successful transplant)
  • if all other factors are equal, priority is given to patients younger than age 18 if the donor is younger than 35 (for kidneys) or 18 (for all other organs)

The matching system does not consider social factors that do not affect medical need or prognosis, such as a person’s wealth, celebrity status or cause of his/her organ failure.

All donation and transplantation professionals work to save and enhance as many lives as possible through the selfless gift of organ donation.  We share in the hope that in the future, no one will suffer or die needlessly because an organ was not available in time.

-0-

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 lovePlease view our two brand new video “Thank You From the Bottom of my Donor’s heart” on You Tube at http://www.youtube.com/watch?v=ifyRsh4qKF4  This video was produced to promote organ donation so it is free and no permission is needed for it’s use.

Another important video is “A Transplant for Nurse Lori” this brave woman has Multiple Sclerosis and needs help paying her share of the bill for a procedure that can halt the disease in its tracks and even reverse some of it.  Watch the video at http://www.OrganTI.org.

Also…there  is more information on this blog site about other donation/transplantation issues.

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.

%d bloggers like this: