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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.

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.

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.

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