380
UNIVERSITY OF CALIFORNIA, LOS ANGELES
BERKELEY - DAVIS - IRVINE - LOS ANGELES - RIVERSIDE - SAN 111EGO - SIN FRANCISCO
October 26, 1983
The Honorable Henry A. Waxman Chairman, Subcommittee on Health and the Environment U.S. House of Representatives 2415 Rayburn House Office Building Washington, D.C. 20515
Dear Mr. Waxman:
UCLA
SANTA BARBARA - SANTA CRUZ
UCLA SCHOOL OF MEDICINE
DIVISION OF PEDIATRIC NEPHRO GY
CENTER FOR THE HEALTH SCIENCES
LOS ANGELES, CALIFORNIA 90024
(213) 206-6987
Enclosed please find the paper authored by the officers of the American Society of Transplant Physicians, stating our position on the issue of organ retrieval and the buying and selling of organs from living unrelated donors. I apologize
for the "To the editor" format, hut because of the committee rules and resultant rapidly approaching deadline, I felt it was best to speed it to you immediately. This position paper will be submitted to the New England Journal of
Medicine as a rapid communication Letter to the Editor, because of our strong feelings on the subject.
Thank you for allowing our society to share these views with you.
Sincerely,
Robert Ettenger, M.D.
Assistant Professor of Pediatrics
UCLA School of Medicine
President-Elect American Society of Transplant Physicians
RE: al Encl.
381
American Society of Transplant Physicians
President:
Secretary-Treasurer:
AMERCAN
Carpenter, M.D.
President-Elect:
Robert B. Ettenger, M.D.
Councillors-at-Large
Peter Gailiunas, Jr- M.D. (83)
Noancy E. Goeken, Ph.D. (84)
TRANSPLANT PHYSICIANS
h. A. Hansen M.D. (85)
Past President:
.nald D. Guttmann, M.D.
Charles B.
Lawrence G. Hunsicker, M.D.
Nephrology Division
SOCIETY OF
TRANSPLANT
University of Iowa
Medical College
Bldg. 3. Veterans Administration
AMERICAN SOCIETY OF
Medical Center
Iowa City, IA 5224D
October 7, 1983
To The Editor:
The art and science of transplantation have progressed dramatically in the last ten years. Advances in tissue typing, surgical techniques, immunosuppressive drugs and pre- and post- transplant patient care have allowed success rates in
organ replacement which continue to improve. This improvement has had the impact of focusing professional and public attention on the field of organ transplantation in general and specifically on the supply of donor organs.
It appears clear that the supply of donor organs is presently insufficient to permit prompt transplantation for all those who need it. This shortage of organ donors sometimes translates to waiting times measured in years rather than
months. Such waiting times are manifestly too long, particularly for patients awaiting liver, heart or heart-lung transplants. For these patients, death may well intervene before a suitable cadaveric donor can be found. Patients awaiting
kidney transplantation are not under such severe time constraints, because of the availability of dialysis. Nevertheless, the relatively frequent requirement for a well-matched kidney and the paucity of donor organs often impose
inordinate and heartbreaking delays until transplantation can be attempted..
At present there are two sources of donor organs available for transplantation: cadaver donors and family members, i.e. living related donors. The latter obviously can only be donors in a situation where the desired organ is paired , and
the removal of one of the organs does not imply permanent disability or death for the donor. Even with kidney donation, however, there are small but real immediate risks of surgery and possible but unknown long-term consequences.
As a result, living donation has in the past been restricted to those close relatives whose deep motivation prompts donation to a loved one despite these palpable risks. It has been considered medically ethical to do this
because-kidneys from living related donors have, by and large, a significantly decreased incidence of immunologic rejection.
Kidneys from dying individuals (termed "cadavers" in medical parlance) represent the major source of organs in most renal transplant programs. The graft and patient outcome in cadaver renal transplantation is not as good as that
obtained with living-related transplants. Nevertheless, results with cadaveric kidneys are getting better because of the advances noted above.
Today the supply of cadaveric organs is clearly inadequate to meet the demands of a rapidly improving transplantation technology. It is estimated that only 10% or less of all suitable cadaver organs are made available for
transplantation. In an effort to meet this need, a number of new plans and ideas have been
put forward. One plan which has received a great deal of publicity and attention proposes allowing unrelated individuals to donate their organs, in this case one of their kidneys, for a "free-market" determined
price. The argument is made that with the new advances in immunosuppressive drugs, and in particular the upcoming availability of Cyclosporine, the success of unrelated transplants warrants the retrieval of
kidneys from living donors to relieve the scarcity of cadaver organs. However, in the view of many physicians engaged in transplantation, this "free-market" sale of an individuals organs is morally offensive and
ethically indefensible. It is immoral to offer incentive to undergo permanent physical damage. The opportunities for coercion of the poor to yield a "perfectly-matched" organ is at once heart-rending and frightening.
Many centers have grappled with the ethical consideration implicit in living-related donation and have come to accept it only because of the high motivation of the donor and the improved success of the recipient.
Neither of these is the case with a purchased kidney from a livingunrelated donor. There is no data to suggest that kidneys taken from livingunrelated donors will function any better, more quickly or longer than
cadaveric grafts. Even with cyclosporine and other new immunosuppressives, the success of a kidney transplant is by no means assured, with post-operative complication and side effects being the usual course
of events rather than as the exception.
It is impossible for physicians to ethically justify removal of kidneys from living unrelated human beings when we are utilizing only a small fraction of the available cadaveric organs. Efforts must be directed towards
procedures which will bring home to every individual the need and mechanism for allowing themselves or loved ones to become organ donors. Much of the responsibility for this lies with the medical community.
Reluctance to broach the subject of organ donation with next-of-kin at the time of death has been a major impediment to adequate organ retrieval. A number of legislative steps can be envisioned which would
improve this situation. For example, specific wording could be adopted which would guarantee immunity from legal liability for the purpose of approaching family members to discuss organ donations. Alternatively,
we in the United States could adopt an anatomical gift act similar to the one operative in France. There, every individual is regarded positively as an organ donor at the time of death unless they or their
next-of-kin have indicated otherwise. Such an approach rather than being a coercion, allows medical personnel to freely and easily approach the next-of-kin about organ donation at the appropriate time without
fear of litigation, either real or more likely, imagined.
Whatever mechanism is chosen to improve retrieval of cadaveric organs, a success in this endeavor is clearly preferable to a "free-market" sale of kidneys from the living. It may be argued that even today in the
United States certain unrelated individuals, such as spouses, have become kidney donors. However, this has been carried out only in rigorously controlled scientific settings and only after an Institutional Review
Board (IRB) of the hospital has approved it from a medical ethics standpoint. This is in no way comparable to the proposed "free-market" sale. The "free-market" sale concept has been put forward only because
the medical, governmental and lay communities alike have failed to provide adequate mechanisms to procure cadaver donors and keep pace with improving transplantation technology. The best answer to the
ethical ly-distasteful "freemarket" sale concept is the institution of appropriate policies to assure an adequate supply of cadaver donor organs.
Charles B. Carpenter, M.D.
Robert B. Ettenger, M.D.
Terry B. Strom, M.D.
American Society of Transplant Physicians
383
Juvenile Diabetes Foundation International 23 East 26th Street, New York, New York 10010, 212-889-7575
EXECUTIVE OFFICE
November 11, 1983
The Honorable Henry Waxman Chairman Subcommittee on Health and the Environment 2415 Rayburn House Office Building U.S. House of Representatives
Washington, D.C. 20515
Dear Congressman Waxman:
The Juvenile Diabetes Foundation (JDF) is an international voluntary health organization dedicated to supporting and furthering research and education in
diabetes. We would like to express our strong support for H.R. 4080, "The National Organ Transplant Act."
We support the various provisions included in H.R. 4080 pertaining to (1) the establishment of a grant program for the development of local organ
procurement organizations; (2) the creation of a United States Transplantation Network; and (3) the establishment of the National Center for Organ
Transplantation, which would serve as the Federal focal point for all organ donation and transplantation activities, public and private, throughout the
United States. Furthermore, we believe that Congress should seriously consider providing reimbursement for organ transplantation procedures under the
Medicare and Medicaid programs, an endeavor which would encourage private insurers to do the same. Finally, we are pleased that your bill prohibits the
sale of human organs.
We would like to comment on several specific aspects of the transplantation issue that pertain to diabetes -kidney, islet cell, and pancreatic
transplantations. While kidney transplantation is important to those diabetics who have suffered kidney failure, this is but one approach to treating one
of the many complications of diabetes. Recent research breakthroughs in islet cell and pancreatic transplantation are exciting because they embody the
potential to cure diabetes.
The Wall Street Journal, Monday, July 25, 1983
Providing Incentives for Organ Donations
By Harry Schwartz
One needn't be very alert to the latest trends in medical journalism to notice that there is much more talk about organ
transplants than there used to be. Almost every week it seems there is another mother or father on the TV news
appealing for a liver to save the life of a sick baby or child. Congressmen, normally preoccupied with cost
containment in medicine, have recently criticized the armed forces because their medical program for dependents
won't pay for most organ transplants. And the newswire services gave extensive coverage to the fact that when
18-year-old Ramond Camacho died in an auto accident last June 5, his family gave permission to use all his body
puts so that at least 16 people received transplants from him.
The basic reason far this upsurge is the simple fact that to all astonishing degree, the medical barrier that made organ
transplants very rare until recently has been surmounted. A new drug, cyclosporine (Sandimmun Is the brand name),
has largely overcome the rejection problem that for many years made every transplant an event of high and perilous
medical adventure.
The Food and Drug Administration is expected to approve the general use of cyclosporine soon. But already it has
been used in numerous experimental programs in the U.S. and abroad with very substantial success. At Stanford
University Medical Center, for example, Dr. Norman Shumway’s heart transplant team a decade ago saw only 20%
of its patients survive a year or longer. Now, Dr. Philip Oyer, an associate of Dr. Shumway, reported recently, about
80% of heart recipients at Stanford survive two years or longer.
The old Scottish recipe for rabbit stew begins with the injunction, "First catch your rabbit." So it
is with organ transplants. Now that the chances of a patient receiving very substantial benefit
from a kidney, liver, heart, pancreas or other organ transplant have increased enough to
justify doing these operations on a large scale, surgeons and patients have run up
against the hard fact that there simply aren't enough organs available for transplantation. Thousands of American
died or will die this year whose lives could have been prolonged if they had received
the organ transplants they needed.
In an absolute sense there probably never will be enough natural organs to
help all those who might benefit from transplants. About 750,000 Americans die
annually from heart disease and some cardiologists estimate that at least 50,000 to 100,000
could be saved it either natural heart transplants or suitable artificial hearts were available.
But the harsh fact is that the U.S. has only about 20,000 potential donors annually.
To be a potential donor a person must suffer brain death - usually because of an automobile
accident or other trauma - at an age less than 40 or 45 and have been otherwise in good health.
But of the 20,000 potential donors who died last year, only about 2,000 or 2,500 actually
provided organs for transplantation. The resultant organ shortage is the reason mothers and
fathers are on television pleading for organs to save their children's lives. So far spouses of more
adult patients who need transplants haven't been able to get much air time from TV news
producers.
What this waste of about 90% of all potentially transplantable organs means can be illustrated by
a simple statistic. There are now about 8,000 persons on kidney dialysis, and the cost of their
treatment annually is hundreds of millions of dollars. If the kidneys these patients need were
available, roughtly that same sum could pay for the operations to free these patients from the
need for dialysis altogehter. On a less mercenary note, the quality of life is simply better if an
individual has a functioning kidney to cleanse his blood than if he is subject to dialisys every day
or several times a week.
It is already clear that in this field, medical capability has outrun the development of societal
mechanisms to meet the needs created by the progress of medical technology. The result is a
frantic effort to improvise the needed mechanism to get more organ donors and, very visibly, the
effort of different groups to apportion blame.
Patients tend to blame doctors, asking why physicians don’t intervene every time the find a
suitable brain-dead patient and ask that unfortunate’s relatives to permit use of the corpses’
organs for transplants. Doctors, naturally enough, tend to reject the blame put upon them. They
speak of the shocked and dazed conditions of fathers, mothers and other relatives suddenly told
that a loved one is beyond hope because of a sudden accident or other trauma.
Such efforts to place blame do nothing to solve the basic problem: When a tragedy converts a
recently healthy and vital human being into a potential organ donor, there is no fixed, known
societal incentive to make everyone involved aware that their loss can be turned into a source of
help and succor for others.
Why are we so afraid to use the simple capitalist technique of a reward? Why is there no societal
agreement that when a potential donor is located, that donor’s closest relatives will be paid a
substantial sum if they agree in time to make his organs available? If all private and government
health insurance agencies agreed that, say, $2,500 would be paid to the closest relatives of a
donor, the possibility of organ donation would then arise naturally. Doctors would have a ploy
with which to raise the question, and the deceased’s relatives would have an incentive to raise the
issue themselves.
Obviously the donor’s relatives needn’t take the money. They could designate a favorite charity
to benefit instead. In that way relatives who might otherwise feel guilty at benefiting from a
death could still have an incentive to cooperate.
The suggestion made here is a simple and obvious one. Why then has it be ignored to date? One
reason probably is the bad press that over the years has been associated with the idea of paid
donors of blood. It was long ago established that this practice tends to attract donors who have
hepatitis and other transmissible diseases. A person receiving a blood transfusion is far better
served if the blood has come from a voluntary donor moved only by altruism or by the
requirement to donate blood if his or his family’s future blood needs are to be met.
But blood donation has very little in common with the donation of such vital organs as the heart
or the liver. To become a potential donor of such organs, one must be effectively dead.
Some people think that any intrusion of money into medical matters is morally wrong. But that
is simplistic romanticism that rarely is carried to the length of refusing to see a doctor when one
is sick. The similar romanticism that refuses to provide a monetary incentive for making organ
donations available is more expensive because every week, and perhaps even every day,
Americanss die who might be saved by a transplanted heart or liver. In the new age created by
the availability of cyclosporine, a more realistic and more pragmatic attitude is required if we are
to prolong the lives of the tens of thousands for whom new futures have been opened by one of
the great miracle discoveries of modern medicine.
Mr. Schwartz writes frequently on scientific and medical matters for the Journal.