ORGAN
GRINDERS
The
federal government's idea of "fairness" may
exacerbate an already deadly organ shortage.
REASON November 1998
By
James V. DeLong
A
few decades ago people joked that the human body, once
its divine spark was extinguished, was worth about $2.00,
which was the market value of its constituent chemicals.
Times change, and the revolution in organ transplant
technology has turned our bodies into mines of valuable
spare parts. But restrictions on the procurement and
distribution of organs hamper the use of this resource,
with deadly consequences. A new federal rule is apt
to make matters worse.
In
1996, 281 hospitals performed almost 20,000 of the five
most common major-organ transplants (kidney, liver,
pancreas, heart, and lung), at a cost of more than $5
billion. (See table.) The main constraint on the system
is the supply of organs. The 19,366 transplants in 1996
relied on organs from 5,417 cadavers and 3,553 living
donors. Eighty-six percent of the latter involved transfers
between relatives, usually of kidneys. More bodies are
needed, but only 10,000 to 15,000 of the 2.4 million
deaths in the United States each year produce recyclable
organs, and the number of people on waiting lists keeps
growing, from 27,805 on the list at some time during
1988 to 72,386 in 1996. More than 4,000 patients will
die this year waiting for organs.
These
waiting list numbers actually understate the shortfall.
No one gets on a list until he passes "the green
screen" by demonstrating his ability to pay for
the operation, which in practice means that he must
have first-class health insurance coverage. Medicare/Medicaid
pays for 39 percent of all transplants, private insurance
for 38 percent. For 20 percent of patients, the type
of payment is unknown. The remaining 3 percent is spread
among miscellaneous sources such as "other government"
and "self." The number of patients filtered
out by the green screen, who could benefit from transplants
if the price came down enough for them to pass it, is
conjectural.
Corneas
are not in short supply. Many more suitable organs are
available, and in many states dead patients' family
members are presumed to consent to the harvest unless
they specifically say no. Since few know about this
policy, few refuse. The average cost of a cornea transplant
is $8,000, and 45,000 are performed each year. Other
transplants are much more expensive: $172,000 for a
kidney, $317,000 for a heart, $394,000 for a liver (including
five years of follow-up).
The
National Organ Transplant Act of 1984 bans the sale
of human organs. The donor is supposed to be inspired
solely by the spirit of giving. Doctors and hospitals,
however, may charge substantial sums for the services
involved in transplanting. The nation's 63 federally
approved organ procurement organizations collect an
average of $24,000 per organ, or $70,000 per cadaver,
from ultimate medical payers. This money is divided
among the procuring organization, the harvesting hospital,
and, according to some allegations, medical personnel.
The exact split is murky.
The
1984 law also set up the Organ Procurement and Transplant
Network (OPTN) to promote the sharing of organs across
geographic boundaries. The OPTN is run under contract
by a private corporation called the United Network for
Organ Sharing, which is in turn run by the private institutions
with an interest in transplants. The original idea behind
the network was that an organ would be used locally
if possible, but if no suitable recipient could be found
or if local facilities for transplanting were not adequate,
the OPTN would broaden the search.
In
1988 only about 25 percent of recovered livers were
used locally; 66 percent were shared with other centers;
and the rest went for research or had to be discarded.
The pattern was similar for other organs. During the
last decade, the percentage of organs used locally has
risen. It was 62 percent for livers in 1996, and there
have been comparable increases for other organs. This
trend occurred because knowledge of surgical techniques
became more widespread and medical centers found transplant
programs increasingly attractive. Such programs lend
a cutting-edge aura to hospitals, doctors like them,
and they bring in welcome overhead payments. As a result,
the number of centers has expanded dramatically. Today,
124 centers do livers, for example, compared to two
in 1983.
Other
changes have cut the other way, against localism. Preservation
techniques have improved, so organs that would once
have been used locally or not at all can now be shipped
across the country. Citing this development, some of
the pioneer programs that have been losing market share
in recent years have started to pressure the Department
of Health and Human Services for a national system of
organ allocation. According to National Journal,
the University of Pittsburgh, which went from 569 liver
transplants in 1990 to 244 in 1996 (even as the national
total doubled) has spent $260,000 to lobby Congress
and enlisted two certified Friends of Bill to lobby
the White House and HHS.
Congress
and HHS have already taken steps toward establishing
a national organ plan. Under the original version of
the organ transplant law, membership in the Organ Procurement
and Transplant Network was voluntary, and the network
played a role only when an organ could not be used locally.
In 1986 Congress required all transplant hospitals to
join the OPTN and agree to adopt any allocation policies
approved by HHS, on pain of losing Medicare eligibility.
Under
an HHS rule scheduled to take effect on October 1, organs
would go to the medically neediest person on the national
waiting list, wherever he is located, as long as transport
is technically possible. (Kidneys last 72 hours; livers
12 to 24; hearts only six.) "Neediest" means
most in danger of imminent death. This standard would
replace the multiple and only partly articulated criteria
currently applied at the local level. For example, the
OPTN's criteria for kidneys give extra points to people
under 18. Data on waiting times for livers hint that
transplant centers favor children for these organs as
well.
In
justifying the new rule, HHS notes that waiting times
under the current system vary, sometimes widely, from
one part of the country to another. The department argues
that patients everywhere should have an equal chance
at an organ under uniform medical criteria. HHS draws
no distinctions by age or cause of disease.
The
HHS rule has prompted loud objections. At the local
level, relations between the organ procurers who get
the families to sign on the dotted line and the transplanters
are tight, and the centers take a proprietary view of
their acquisitions.
Sharing
is often low on their list of priorities. In testimony
this year, an HHS official told Congress with horror
that sometimes, even when another hospital has a perfect
match, a center will give up an organ only upon a promise
of future repayment in kind. States are also taking
a proprietary view: Louisiana, South Carolina, Wisconsin,
and Oklahoma have passed laws purporting to require
that organs donated locally be used locally. The OPTN
and HHS are still negotiating, and as this is written
it seems unlikely that the new rule will take effect
on schedule.
Proponents
of localism note that transplants require a lot of follow-up,
and they argue that patients do better if the operation
takes place near home. They also believe that people
are more likely to donate organs if they know their
gift will be used locally. Another argument, hinted
at but rarely stated explicitly, hinges on the fact
that procuring organs requires confronting a family
at its moment of maximum anguish. Medical personnel
are more likely to steel themselves for this task if
the organs they obtain will be transplanted by surgeons
they know into their own patients. If the organ is going
off to who-knows-where, the procurement effort is likely
to be perfunctory.
More
mercenary considerations are also at stake. If priority
is given to local use, then the industry will be characterized
by a multitude of local programs, each performing a
limited number of transplants. It will be difficult
for national centers to develop because such entities
cannot be supported by donations in a single city.
Sixty
percent of the people on the waiting list for the University
of Pittsburgh's liver transplant program are from outside
the area, for example, even as the number of procedures
performed there has declined. The local centers fear
that HHS wants to move toward a system of major national
transplant facilities.
The
centers argue that HHS's "sickest first" policy
serves the interests of their big competitors. As the
director of the Wisconsin Donor Network put it: "The
redistribution of organs away from Wisconsin so as to
ostensibly benefit the 'sickest' patients can be perceived
to satisfy the business agenda of a few transplant centers
which have encouraged unlimited growth in their waiting
lists till they have outstripped the capacity of their
community to meet their organ needs. This situation
is exacerbated when these lists are heavily populated
with out-of-area patients, many of whom could be transplanted
quicker and with better outcomes in their home community."
The
participants in this debate agree on a few points. One
is that donors and their families should have no say
in who receives organs. Doctors and bureaucrats regard
this as so obvious that they never bother to justify
it. In fact, it is far from obvious. Quite the reverse
- given the intimacy of the gift, the donor should have
a say.
One
reason for HHS or the medical establishment to eschew
criteria of moral worthiness in allocating organs is
that such standards are highly subjective. Fine. Let
multiple criteria be used, reflecting the views of multiple
donors. HHS is also making a moral judgment by establishing
a standard of "sickest first." It is deciding
that a small chance of a couple extra years for a cirrhotic
senator is more important than a good shot at 40 years
for a young person who contracted a rare liver disease
while serving in the Peace Corps. One can see why Congress
would regard this as a reasonable set of priorities,
but others are entitled to skepticism. "Sickest
first" also means that more repeat transplants
will be required and more recipients will die.
Every
wasted organ means that someone else who might have
lived won't make it. HHS's avoidance of considering
"life years" or "quality of life"
(instead of just "life") is ethical cowardice.
To force patients to reach the brink of death before
receiving a transplant out of fear that someone, somewhere
might be willing to exercise moral responsibility lends
new meaning to the term "dead hand of bureaucracy."
A
donor might also be disturbed by the financial requirements
for a transplant. He might decide to earmark an organ
for a less-favored class of people on the condition
that other players in the system cut their fees to make
the operation affordable. If my liver were in shape
to be useful to anyone, I would deem small-business
operators and other poorly insured people at least as
worthy as well-covered bureaucrats.
Another
point so well accepted that it's rarely mentioned is
the assumption that organ donors should not be paid.
Even though everyone agrees that donation rates need
to be raised, few are willing to consider how financial
incentives might serve that cause. A lively debate on
the issue is heating up in the academic literature,
including the pages of the prestigious British medical
journal Lancet, and is beginning to spill over into
popular discussion.
The
idea that it's offensive to discuss transplants in financial
terms is droll, since the system is awash in economic
calculations by medical centers, surgeons, health insurers;
everyone except the donors.
In
a current working paper, Julia Mahoney, an associate
professor of law at the University of Virginia, notes
that "given our current institutional arrangements,
avoidance of market language is misleading and even
damaging," making it difficult "to comprehend
what benefits are available and how they are distributed."
By
trying to establish a single national distribution system,
the federal government is moving in precisely the wrong
direction. We don't trust central planning to deliver
potato chips. Why should we trust it to deliver life-saving
organs?
JAMES
V. DeLONG
Washington
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