UNOS CEO: Study Could Redefine “Medically Suitable” Donors
Posted by Bob Aronson
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.
Chief Executive Officer
United Network For Organ Sharing
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
Return letter from Walter Graham
Received on August 22, 2012
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.
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 firstname.lastname@example.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 email@example.com 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.
About Bob AronsonAbout Bob Aronson On August 21, 2007 I received a new heart at the Mayo Clinic in Jacksonville, Florida. All these years later I am very active, happy and loving life. God bless my donor and his family. His generosity toward a complete stranger will never be forgotten. I am retired and live with my wife Robin and two dogs Reilly the main dog and Ziggy the backup. We are a very happy family. My gratitude to my wonderful caregiver wife, my donor, his family and the Mayo Clinic is beyond my ability to express. Suffice it to say I will do whatever is in my power to promote organ and tissue donation and to help and support everyone affected by the issue. As a result of receiving the “Gift of Life” I have made a major commitment to organ/tissue/blood donation, transplantation and related issues. I am the founder of Facebook's over 4,000 member support group, Organ Transplant Initiative (OTI) and the blog site, “Bob’s Newheart” www.bobsnweheart.wordpress.com. I have authored the great majority of the nearly 250 blogs listed there. The remainder were written by excellent guest bloggers. The posts span a wide variety of topics mostly involving organ/tissue donation/transplantation and related issues, but also covering important current medical news and information. Wordpress data indicate the blogs have readers in 162 countries. Bob's Newheart is quickly becoming the news and information source of choice for those with an interest in organ/tissue donation/transplantation along with current developments in medical news and health care. Born In Chisholm, Minnesota I now reside in Jacksonville, Florida. I have three children and one step son, 8 grandchildren and 3 great grandchildren. My three grown children are Roger Aronson a well-known and respected Minneapolis, Minnesota Attorney, Dr. Colleen Hegranes Senior Vice President St. Catherine University in St. Paul, Minnesota and Harryet (Hank) Freeman who is probably the best history teacher in America, at least that's what her students at Woodbury, Minnesota High school tell me. Stepson Tim Grant and wife Jennifer live a couple of blocks from us in Jacksonville. Jen is a talented cook, baker, and mother. Tim is an in-demand electrician in Jacksonville who can really make almost anything work. Stella and Lily Grant are two very bright and talented granddaughters. For 25 plus years I owned the Aronson Communications Group an international consultancy specializing in health care communication. The Mayo Clinic was my first consulting client, a relationship that lasted until my retirement. I also worked with 3M health care, UNOS, LIfeSource, Dartmouth University Medical Center and CH2M HILL, one of the nation's largest environmental engineering firms. Prior to being a consultant I served for four years as the first Anchor for Morning Edition on the Minnesota Public Radio Network; was the Communications director for Minnesota Governor Rudy Perpich and before that held positions as a broadcast journalist at several Midwest facilities. I also served as the Director of broadcast communications at Moorhead State University in Moorhead, Minnesota. While I am retired Robin is not and I assist her efforts as founder and owner of Jingler’s Jewelry. She designs and makes colorful, "Fun" anodized aluminum jewelry and is also an accomplished printmaker. She sells her creations at art shows, festivals and gift shops in states east of the Mississippi but mostly in the south. Her website is www.jinglersjewelry.com. When I have time, my hobbies include reading, music and woodworking. One of my most notable projects was completing a wood scale model of the mom and pop grocery store my parents ran for 50 years in Chisholm, Minnesota. The model now resides in Chisholm in my sister's home. Our parents were wonderful people who instilled in us a very strong work ethic and a sense of fairness and equality. I also built a dollhouse for granddaughter Lily Grant and just completed designing and building a CD box that looks like an accordion. A friend commissioned me to make it in memory of his father who was an accomplished accordion musician. I have a brother and sister of whom I am very proud . They are twins. Terry is a Minnesota District Court Judge and Mary a retired but still the best 3rd grade teacher in America. I am proud of them for what they have done but more importantly for who they are. My wife Robin is a caregiver, musician, artist, entrepreneur and the best friend I have. While we do a lot of things together we especially like making music. Often in the evening you can hear the strains of folk, Blue Grass, country and other music coming from our family room. Robin plays several instruments including string bass, accordion, guitar, ukulele, mandolin and...well the list goes on. I play harmonica and have one in almost every key. She's really good...I'm not. Quantity does not ensure quality. One more thing. I am also a recovering Alcoholic and a former smoker. I emerged from a 28 day in-patient alcoholism treatment program in August of 1982 and have managed to stay sober with the help of a lot of people both in and out of Alcoholics Anonymous. I quit smoking in January of 1991 after a 37 year habit of up to four packs of cigarettes a day. It wasn’t easy but I’m living proof that it can be done. I am available to anyone suffering from or affected by any addiction at any time through my email address firstname.lastname@example.org or via phone 904-434-6512.
Posted on August 22, 2012, in Organ Donation and tagged altruism, Center for Transplant system Excellence, consent, Deceased Donor Potential Study, define, depression, donors, ethical, ethics, law, lawmakers, mandate, NOTA, OPTN, organ donation, patients, Preferred, public, regulations, society, transplantation, United Network for Organ Sharing, UNOS, Walter Graham. Bookmark the permalink. 2 Comments.