The organ gap

There was a time when the idea of transplanting human organs
was the stuff of science fiction and cheesy horror films. Today, organ
transplants are a standard feature of the medical landscape. But out of success
has come crisis. Would-be transplant recipients in Rochester and throughout the
country face a disparity of supply and demand that grows worse each day.

            The organ
transplant era began in December 1967, when a surgeon in South Africa named
Christiaan Barnard placed the heart of a 25-year-old woman who suffered fatal brain damage into the chest of a man
with advanced heart disease. The heart recipient
lived only 18 days after the operation, but news of the successful transplant
was a sensation. Even though kidney, lung, and liver replacements already had
been performed, transplanting a heart was symbolically a bigger story, and it
changed the way people thought about life and death.

            With
improvements in surgical techniques, new ways to preserve human organs out of
the body, and the development of highly effective immunosuppressant drugs,
patients with conditions that not long ago meant certain death can now have
hope. Unfortunately, hope is as much as many of them ever get, because the
demand for hearts, kidneys, livers, and other organs far exceeds the number
available for transplant.

The
outlook for a solution to the organ gap is not good.
Owing in part to dramatic increases in organ-destroying diseases like diabetes
and high blood pressure, the number of people in need of an organ transplant
has ballooned. Meanwhile, the national rate of organ donation from dying
patients has been flat for two decades.

            The
Rochester area is an exception. With a 62 percent increase from 2000 to 2001,
Rochester leads the nation in per capita organ donation from dying patients.
Still, hundreds of local would-be organ recipients await transplants at Strong
Hospital.

            Nationally,
nearly 80,000 people are on the transplant waiting list — more than 50,000 of
them in need of a kidney. A report by the federally contracted United Network
for Organ Sharing (UNOS) shows that during the 1990s, the waiting list for
transplants in the US almost tripled in size while the number of transplants in
the same period grew by less than 50 percent. More than 6,000 patients died in
1999 while waiting for transplants.

            People suffering from conditions
that a transplant could alleviate are living in an agonizing in-between period
in medical history. The know-how is there to save lives, but the essential
biological components are in short supply. Meanwhile, stem cell research,
tissue engineering, and other emergent technologies hold the promise of
made-to-order body parts and other wonders.

            “We’re
in the midst of a medical revolution that some say is as significant as the
industrial revolution or the invention of the printing press,” says James
Warren, editor and publisher of Transplant
News, a national newsletter for professionals working in organ transplant
and related fields. “I wouldn’t say anything is off limits. It’s only a matter
of how much it will cost and what society will accept.”

            But
the promised miracles of tomorrow are still out of reach, and people in need of
transplants today find their hopes circumscribed by stark supply-side
statistics. Somewhere around 14,000 people nationally die each year under
conditions that make their organs viable for transplant — they suffer brain
death in a hospital while their heart keeps beating. Less than half of these
patients become organ donors.

            There
has been a marked rise in the number of living organ donors willing to give a kidney or part of their liver to help someone
else survive or get off dialysis (a 16.5 percent increase in 2000 to a total of
more than 5,500). Still, the gap between supply and demand continues to widen.
The average waiting time for a kidney transplant in Rochester has doubled in
the past four years.

“We feel like salmon swimming upstream,” says Bill Morris, executive
director of the Finger Lakes Donor Recovery Network, one of 59 Organ
Procurement Organizations (OPOs) nationwide promoting organ donation and
coordinating organ allocation. The Finger Lakes OPO area includes Rochester,
Syracuse, and part of the Southern Tier. As elsewhere in the nation, the
pressures on patients and transplant professionals here are fierce. “We see for
the first time desperate people advertising in the paper for a kidney,” Morris
says.

            Alongside
the dilemma of organ supply is the potentially explosive question of who gets
the organs that are available.

            “There is
no [allocation] system that is perfectly equitable,” says Martin Zand, medical
director of the kidney and pancreas transplant programs at the University of
Rochester Medical Center. “There are published studies that if you are poor you
may not be referred as quickly by your doctor for a transplant,” Zand says.
However, he says, for kidney transplants, once a patient is in the system, the
allocation is very fair. “It doesn’t matter if you are president of the United
States. No matter how prominent you are, you cannot skip to the head of the
list.”

            Kidney
allocation is governed by a national policy. (Each of 13 transplant regions
nationwide is able to decide subtle differences in policy. New York State, one
of the 13 regions, has three OPOs and several transplant centers — including
those at Strong Hospital and University Hospital in Syracuse.) Most kidneys
stay in the OPO area in which they are donated. Only if a kidney matches
perfectly to a potential recipient on the national waiting list is it rushed by
jet to wherever the patient is.

            In
addition to being matched to organs according to blood type and genetic immune
response, every transplant recipient must pass a third type of matching — the
“serum cross-match.” This tests whether a specific recipient will have an
immune reaction to a specific donor kidney. If this test is positive, it means
the recipient’s serum would attack the blood cells from the donor and quickly
destroy the kidney.

Until
patients with kidney failure get their turn on the
waiting list and have a negative serum match with a donor kidney, they wait…
and sometimes wait and wait. “People can live on dialysis 20 to 30 years,” says
Zand.

            A better
alternative for more and more patients is to find a living donor. Of course,
the increase in organ donation from healthy living people has engendered its
own set of issues and ethical dilemmas.

            The
first successful kidney transplant, at Boston’s Brigham Hospital in 1954,
involved a living donor — one identical twin donating to the other. Kidney
transplants from dying patients didn’t happen until 1962. Transplants from
living, closely related donors were long favored simply because it was easier
to get a genetic match between donor and recipient.

            As
immunosuppressant drugs improved, making rejection of transplanted organs by
the recipient’s body less of a problem, transplant teams found success with
“emotionally related” donors and recipients — typically transplants from one
spouse to another. As demand for organs continued to rise, transplant centers
began to accept donors with various kinds of relationships to the recipient —
old friends, associates from work, even members of a church or community group
who barely know the recipient.

            While
donating a healthy kidney is deemed to be relatively safe for the living donor,
some aspects of living organ donation make hospitals and transplant
professionals jittery. Suppose a boss put pressure on a subordinate to be a
donor.

            And the
pressure can come the other way, from a would-be donor who wants to establish
some kind of relationship the recipient does not welcome. “There are even
people who want to have visiting rights,” Zand says. “I’m not making this up.
People have called and said, if I donate a kidney can I have visiting rights?”

Given the need for organs, there is
significant pressure on transplant centers to relax relationship requirements
between donors and recipients. Last winter, a case in the Rochester area
generated headlines. Former television personality Pete Dobrovitz ran a
newspaper ad for a kidney and received one from a Wayne County man, Steve Aman,
who was quoted as saying organ donation was a step along a path of his personal
growth. In that case, Strong Hospital declared its emotional relationship
requirement satisfied because both donor and recipient were graduates of the
same high school, even though they were several years apart and didn’t know
each other.

            Why
would Strong care whether the two had a relationship? One motivation is to
maintain the unquestioned fairness of organ distribution. In some ways,
advertising for an organ is potentially as inequitable as bidding for one might
be. “Just as not everyone has equal financial resources to purchase a kidney
from someone, not everyone has the resources or ability or personal appeal to
mount a media campaign,” Zand says. “Certainly individuals who have access to
the media, who are photogenic, who are articulate have an unfair advantage.”

            A number of
transplant centers allow “anonymous stranger” organ donations, where donors
give organs much as they give blood, with neither the donor nor the recipient
knowing who the other is. These programs allocate kidneys the same way they do
cadaver organs — according to blood type, time on the waiting list, and a
negative serum match. These programs might even advertise and promote organ
donation — not for individual patients but on behalf of their patients at
large.

            But there
is a logistical problem with anonymous donor programs, Zand says. Only one in
every nine prospective donors actually follows through, compared to a much
higher follow-through when an emotional relationship is involved, says Zand.
The process of screening prospective donors is so time consuming that many
transplant centers simply do not have the resources to invest, given such a low
rate of follow-through.

            Despite the
ethical and practical qualms, Strong is moving toward starting up an anonymous
donor program “within the next year or two,” Zand says.

Although the distribution system for kidney transplants appears to be widely accepted as fair and rational,
there is more controversy surrounding the allocation of cadaver livers. On
paper, liver allocation is scrupulously unbiased. When baseball great Mickey
Mantle received a liver transplant in 1995 many people assumed his celebrity
had gotten him preferential treatment, says James Warren of Transplant News. Wrong, he says.
Mantle’s priority on the waiting list was based on a scoring system designed to
measure how sick he was.

            “The
United Network for Organ Sharing
runs a blind list and when a matching liver becomes available they tell you who
is next on the list, according to a fairly complex point structure,” Warren
says. “Mantle was on the list three days, which was about average for someone
in his condition.”

            Mantle
died within two months of his transplant. This reveals a major problem with the
liver allocation system, says Bill Morris of the Finger Lakes Donor Recovery
Network. “If there was a mistake made with Mickey Mantle, it was in trying to
transplant somebody who was too sick,” says Morris. “Mickey Mantle had cancer
of the bile ducts. This is a disease with a very poor outcome. Chances are that
if a patient is transplanted the organ is going to be buried with the patient.
Is that the best use of the resource? No, it is not.”

            United
Network for Organ Sharing recently adopted a new scoring system called
MELD/PELD. Based solely on laboratory analysis, the system is intended to give
a finely tuned assessment of the severity of the condition of a patient with
end-stage liver disease, one that may help lead to better outcomes. “We’ll see
how it works,” says Morris.

Rather
than distract the public with arguments over
allocation, Bill Morris argues that transplant professionals should do all they
can to promote an increase in organ donation. Morris points to the new
statewide Organ and Tissue Donor Registry which provides organ donor
registration materials to New Yorkers when they obtain or renew a driver’s
license.

            “The
registry enables organ procurement programs, hospitals, and tissue banks to
tell the family of a potential organ donor that their loved one was a
registered donor — information the family may never have talked about,”
Morris says. “If they see the [organ registry] card with the loved one’s
signature, which we can pull up electronically, it helps them understand.”

            Family
consent is the linchpin of organ donation. Even though signed organ donor cards
can have the weight of a legal document, transplant centers in this country
rarely go against the wishes of the potential donor’s family. The possibility
of negative publicity is too great a risk in a realm where public confidence is
tenuous to begin with.

            Even
when a dying patient has signed an organ donor card, families in the Intensive
Care Unit waiting room refuse to allow their loved one’s organs to be taken 40
to 50 percent of the time, says James Warren.

            “The
reasons are complex,” Warren says. “The bottom line is that people don’t trust
the system, especially if they are a minority. It’s a manifestation of the
health care they get in general. They think that in the health care system
people are not going to treat them fairly.” Warren sees this as particularly
poignant because, he says, families who allow loved ones to be organ donors do
better in the grieving process. “If their loved one donates organs, five people
can live. That gives them some hope — something mentally to hang on to —
and their lives are better.”

To address the agonizing human dynamics around organ donation, the Finger Lakes Organ Procurement Network
has been testing an experimental program. Under the initiative, mothers of past
organ donors help support families whose loved one is in an intensive care unit
with no hope of recovery.

            “They work
with families not about organ donation, but about how they are going to
survive,” Morris says. “They will get them a cup of coffee, or offer a calling
card to phone a family member in another state, or give them some toiletries.
And they will let the family know that the people in the hospital waiting room
with them have been through a similar tragedy and that in some way they are
going to get through this.” These mothers have helped improve the consent rate
of families of prospective organ donors from 40 or 50 percent, the national
average, to 85 or 90 percent locally, Morris says. The program is expected to
roll out to other areas of the country.

            Despite the
promise of this type of program, Transplant
News‘James Warren believes organ
donation rates will not improve without powerful incentives and even legal
muscle. He refers to countries like France, where a system of “presumed
consent” holds sway and individuals have to actively opt out not to be deemed organ
donors. A less stringent approach for the US, he says, might be a system in
which “you’ve got to be in it to win it” — only registered organ donors can
receive organ transplants.

            Even
more effective than legal compulsion would be some form or financial incentive,
Warren says. “In the entire transplant world,” says Warren, “everybody’s making
money — the organ procurement organization, tissue banks, hospitals,
transplant centers, transplant surgeon. The only part of the equation where
nobody makes any money is the donor family.”

            Financial
incentives could be offered in a way that does not undermine the altruism of
organ donation, says Warren — like a $2,000 payment for funeral expenses,
which could be diverted to charity if the family preferred. Martin Zand worries
that introducing any form of remuneration for living or dying donors would
undermine the donation process. “How can we recognize the donors with something
that is meaningful but not an inducement to sell your organs? I don’t know how
to do that.”

            Zand
is also skeptical about the power of medical technology to solve the dilemma of
organ supply and demand. “I think xenotransplants [transplanting organs from
genetically engineered animals into humans] and tissue engineering are a long
way off for kidneys and livers, which are incredibly complex organs.”

            For
many kidney patients the best hope may be a living donor, says Zand. But, he
says, it is not an easy path to pursue.

            “One
of the hardest things for someone who has kidney disease and is on dialysis is
to ask someone they know to donate a kidney,” Zand says. “It is incredibly
difficult. But every time we hear of someone who has asked their friends, their
coworkers, or their community or church group, they are overwhelmed by the
generosity of people they have no great personal connection with.”

This article appears in Jul 3-9, 2002.