Not Enough Transplantable Organs, Thousands Die…Options for Change
Posted by Bob Aronson
There will come a time when organ/tissue/blood donors are no longer needed. Advancements in mechanical devices, therapeutic cloning (duplication of organs not people) and regenerative methods will negate the need for human donation. But, that’s not going to happen any time soon and until it does we are going to have a shortage that results in thousands of unnecessary deaths.
Twenty eight years ago, The National Organ Transplant Act (NOTA) was approved. Sponsored by Democrat Representative Al Gore and Republican Senator Orin Hatch the act outlawed the sale of human organs and provided for the establishment of a volunteer (Altruistic) system of organ donation in the United States. NOTA also authorized the Department of Health and Human Services (DHHS) to make grants for the planning and establishment of Organ Procurement Organizations (OPOs); and established the formation of the Organ Procurement and Transplantation Network (OPTN).
That was 28 years ago. Since then thousands of lives have been saved by organ transplants but the number of available organs has always, from the very beginning, lagged behind the number of people who need them.
As of right now there are 112,640 waiting list candidates but so far this year there have been only 23,745 transplants done and only 11,711 donors (data from UNOS, the United Network for Organ Sharing www.unos.org ). The numbers are really all the evidence we need to show that the altruistic system is not working. Each year about 6,000 people die while waiting for a transplant. Thousands of other Americans never even get on the list because of a lack of access to specialized care or because they can’t afford a transplant.
While many find this to be an intolerable situation neither DHHS nor UNOS seem interested in making any change to the system. From time to time they will assemble “Ethics” panels to study ways to augment or change it but the answer is always the same, “Unethical.” One can easily ask, “What is ethical about letting all these people die? How can you possibly look at these numbers and say, “Presumed consent and/or some kind of compensation system for donors, is unethical?” Surely something can be designed that will provide the needed number of organs and still be an ethical practice.
I recognize that the highly skilled, educated professionals who make these “Ethical” decisions are faced with a double edged sword 1) changing the system could produce negative publicity and affect their reputations and perhaps some funding and 2) the ethics of allowing people to die. Given those conditions it still seems that allowing people to die is more unethical than making some well-considered changes that would harm no one and benefit many. And…the situation is only going to get worse because modern technology is allowing people to live longer which is adding to the list of people waiting for transplants.
Twenty eight years of letting people die. About 168,000 people are gone because the Ivory tower thinkers refuse to or are afraid to make a change. Had changes been made in the past many of the 168,000 casualties would be alive today and who knows what contributions they might have made to our society.
As I noted in the first paragraph, in the long term we probably won’t need to have a donor system but it will be many years before any of those means become commonly practical. So we’re stuck with the old question, “What do we do to narrow or eliminate the gap between available organs and those who need them?”
My research indicates that while there are not a plentitude of options to consider there are some and they include:
- 1. Mandatory donation (anyone who dies is automatically a donor, no exceptions)
- 2. The LifeSharers approach, (you can only receive an organ if you are a donor)
- 3. Presumed consent (You are automatically a donor unless you opt out)
- 4. Some sort of compensation plan for donors and/or their families.
- 5. A combination of presumed consent and a payment system
Let us tackle mandatory donation first. On its surface it sounds harsh and like a product out of an HG wells book. It is harsh and probably unacceptable because of its dictatorial overtones. Americans don’t seem to like anything that is mandatory whether it is good for them or not, so mandatory donation is unlikely to receive enthusiastic support.
Aaron Spital, and James Stacey Taylor (Department of Medicine, Mount Sinai School of Medicine, New York, New York; and Department of Philosophy, College of New Jersey, Ewing, New Jersey) have written a persuasive paper on the subject of mandatory organ donation. http://tinyurl.com/6wavm4b. Their proposal is simple:
”We propose that the requirement for consent for cadaveric organ recovery be eliminated and that whenever a person dies with transplantable organs, these be recovered routinely. Consent for such recovery should be neither required nor sought.”
The two researchers go on to say,
“We believe that the major problem with our present cadaveric organ procurement system is its absolute requirement for consent. As such, the system’s success depends on altruism and voluntarism. Unfortunately, this approach has proved to be inefficient. Despite tremendous efforts to increase public commitment to posthumous organ donation, exemplified most recently by the US Department of Health and Human Services sponsored Organ Donation Breakthrough Collaborative many families who are asked for permission to recover organs from a recently deceased relative still say no. The result is a tragic syllogism: nonconsent leads to nonprocurement of potentially life-saving organs, and nonprocurement limits the number of people who could have been saved through transplantation; therefore, nonconsent results in loss of life.”
While it is difficult to disagree from a purely logical standpoint, emotions run high on issues like this and it is unlikely to get approval from the American Public.
The second option listed is the approach where registered donors would be offered organs first, regardless of how ill other patients on the list might be. In the U.S. there is one organization, LifeSharers, that has promoted that idea for several years and while they have nearly 15,000 members (http://lifesharers.org/) they have had virtually no impact. In order for the concept to work, they would have to sign up just about every single American…that’s not likely to happen and as far as we know, no LifeSharers member has yet been a donor to another LifeSharers member. To be fair, however, the nation of Israel has adopted a form of the LifeSharers program but it’s still too early to make any assessments on its success or acceptance.
Most people who object to the “Donors” first concept say it is because it deviates from the practice of offering organs (provided there is a match) to the sickest patient first. Their program would offer organs to members first and then if there was no match, the organ could go to the sickest person. Many people object because despite our great national communication system, there are still millions of people who don’t understand the donation/transplantation process, haven’t heard about it, didn’t know you could register to be a donor or, because of a multitude of myths, think they can’t be donors. Despite the honorable efforts by LifeSharers founder Dave Undis, the concept is not being seriously considered by the U.S. transplant community. Additionally LifeSharers growth has been slow indicating limited acceptance by the public. You can learn more about LifeSharers at http://www.lifesharers.org/
The third option is presumed consent and if any option is ever approved in the United States or even some of the states, this will likely be the one. Currently under our altruistic program people “opt in” by signing a donor card and having “Donor’ placed on their driver’s license or other official state ID card. Presumed consent is the opposite. It assumes that everybody wants to be a donor and so you would “Opt out” if you don’t want to be a donor and likely would carry a card that says “Not a donor.” You can learn more about presumed consent at http://tinyurl.com/7mcjoez.
In countries where presumed consent is in effect, (Austria, Spain, Portugal, Italy, Belgium, Bulgaria, France, Luxembourg, Norway, Denmark, Finland, Sweden, Switzerland, Latvia, Czech Republic, Slovak Republic, Hungary, Slovenia, Poland, Greece, and Singapore) the opt out rate has been around 2% which means that 98% of the eligible population would be organ donors as opposed to under 50% in the United States where we have the opt In program. That’s a big difference. The great leveler, however, may be that the countries with opt out as their system still ask family members, at the time of the donors death, for their approval. If they refuse the organ is not recovered.
The most politically sensitive of all the issues is the outright sale of organs. At this point I know of no serious effort in the U.S. that would change our laws to allow a person to sell his/her organs on the open market. It is not realistic to think that any U.S. regulatory or government agency would even consider the idea. Strangely, In Iran of all places, it is legal to sell organs and a healthy kidney retails for about $6,000.
Iran legalized living non-related donation (LNRD) of kidneys in 1988. The Iranian government regulates and funds the donation/transplantation process and compensates donors for their organs. A third-party group arranges contact between donors and recipients (much like U.S. Organ Procurement Organizations (OPOs). In addition to payment from the government, donors receive free health insurance. The transplant recipient benefits from highly subsidized immunosuppression support. Iranian law also provides for charitable organizations to pay the cost of transplants for people who can’t afford them. Here’s an interesting twist, though. It is illegal for the medical teams or any ‘middleman’ like our OPOs to receive payment. Within a year of being implemented the number of transplants in Iran almost doubled.
They system seems to be working in Iran and it certainly could work here…it isn’t as though we aren’t selling things similar to organs. Currently in the United States it is legal to sell yourself to become a surrogate mother and everyday people are paid for sperm, eggs and hair so why not organs. The Iran concept is certainly an option but polls continually indicate it is not a very popular one.
There are some variations on the “Payment” theme that might be attractive to the American people. We could consider a system that “compensates” rather than pays donors or their families. For example, a living kidney donor does not have to pay for the surgery to remove the donated kidney nor does that person have to pay for any of the medical care surrounding the operation those costs are absorbed by the recipients insurance coverage. The donor’s, though, often accrue other expenses like travel to the city in which the recipient lives, lodging, food and time away from work, which could be significant especially if there are any surgical complications. A very good case could be made for compensation for these expenses.
There are other considerations as well. Dr. Sally Satel a Psychiatrist and a kidney transplant recipient who is also a resident scholar at the American Enterprise Institute has written and spoken extensively on the subject of compensation, “The solution to this lethal paternalism, as I and others have argued, is not to create a direct exchange of cash for kidneys, but for Congress to let donors accept a carefully devised and regulated government benefit — perhaps a tax credit, a contribution to a retirement plan or early access to Medicare.”
It would not be a huge stretch to extend Dr. Satel’s ideas to families of deceased donors while also covering funeral expenses even providing some help with college tuition for their children, subsidized prescriptions or even subsidized health care insurance. You can read more on Dr. Satel’s thoughts by going to http://tinyurl.com/yabluu3 .
The final option that could be considered is a combination of presumed consent and a form of compensation that follows the lines described by Dr.Satel.
The point of this blog is to just get people thinking. The present system isn’t doing the job and never will despite heroic efforts at increasing organ donation, there just aren’t enough donors. That we must change if we are to stop the dying, is a given. Determining what that change should be is what is so incredibly difficult.
Consider what I’ve written, discuss it with friends, join discussions on Facebook’s Organ Transplant Initiative and comment in the space provided here. When you have decided what you think is the best solution, you should contact your elected representative or U.S. Senator and let them know your feelings. Change has to begin somewhere, why not with you?
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 two brand new 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.
About Bob AronsonBob Aronson is a former journalist, a Minnesota Governor's Press Secretary and talk show host. For nearly a quarter of a century, he led the Aronson Partnership, a Minnesota-based communications consultancy that prepared corporate and government executives for crisis situations, regulatory testimony, media interviews and Presentations. Among his clients were all three U.S. Mayo Clinic locations, 3M, general Mills, CH2M Hill, the U.S. Department of Energy and scores more. In 2007 bob had a heart transplant after suffering from idiopathic dilated cardiomyopathy for 12 years. Shortly after he got his new heart he founded the now 4,300 member Facebook support group, Organ Transplant Initiative. At the same time, he established the Bob's Newheart blog where he has posted nearly 300 columns on organ donation, transplantation and other health related issues. The Viewpoint blog was started in late 2016 and bears the name of the Radio Talk show Bob did from 1966 until 1974, when he resigned to become Minnesota Governor Rudy Perpich first Press secretary. Bob and his artist wife Robin, live in Jacksonville, Florida with their two dogs, Reilly and Ziggy. Bob is also a woodworker and makes all of the furnishings for Robin's art festival booth. He also makes one of a kind jewelry or "memories" boxes that he donates to select transplant patients, caregivers, donor families and others who have somehow contributed to making life easier for the ill, the elderly and the less fortunate. Bob is in the final stages of editing two full-length novels that will be available on Kindle when ready for release sometime in early 2017. One is a sci fi novel about an amazing discovery near Roswell, New Mexico and you will be surprised to find it has nothing to do with the Roswell story everyone knows. It features a woman scientist who investigates impact craters for the U.S. Department of the Interior, Dr. Rita Sylvester and her female student intern. The other book is a political thriller that introduces a new hero to the genre, Fargo Dennison.
Posted on January 19, 2012, in Ending the Organ Shortage -- Solutions and tagged compensation, congress, donors, Dr. Sally Satel, families, insuranece, Iran, Medicare, opt in, opt out, organs, payment, prescriptions, presumed consent, recipeints, transplants, tuition. Bookmark the permalink. 4 Comments.