Transplant Policies Must Not Fall Victim To Politics
by Dr. R. Patrick Wood
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Until recently I thought I had experienced virtually
all the "bad" experiences in the world of liver transplantation.
Recently, I had one of the worst and most frustrating patient-related
experiences of my career.
Earlier, I had a meeting with the parents of
a delightful 4-year-old girl who had exhausted all therapies to
treat her liver cancer. I informed them we had an excellent chance
to save their daughter with a liver transplant. I told them that
we needed to get her "on
the list" as soon as possible to ensure that we transplanted
before the tumor spread outside the liver and became incurable.
One week later, I had to see the same parents and tell them that
I could no longer feel sure that we would be able to find a liver
in time to save their daughter. The reason is that the Secretary
of Health and Human Services Donna Shalala said in late March that
the national system for matching organ donors with potential recipients
of those organs would be dramatically changed. This unprecedented
move would replace the present system, which was created by a majority
consensus of the entire transplant community, with one designed by
the secretary. Simply stated, Shalala has decided that she is better
qualified to decide who will receive an organ transplant than the
members of the transplant community.
Up to this point, policies have been developed by the United Network
for Organ Sharing or UNOS, a private corporation which was a contract
with the federal government to oversee organ transplantation in the
United States. UNOS, through its extensive committee structure, has
representation of all members of the transplant community, including
recipients, donor families, organ procurement agencies, transplant
physicians and surgeons, nurse coordinators, ethicists, the lay public
and other scientists.
Through its committee structure, UNOS has openly
debated the development of organ transplant policies, which have
been approved by a majority decision of the transplant community.
All policies have been put out for public comment and the final
approval given by the UNOS board of directors. HHS has, up to this
point, simply overseen the implementation of these policies. Why
now would the HHS secretary decide that she is more qualified to
make organ transplant policy than the transplant community? While
the issues regarding organ transplant policy are complex, the answer
to the secretary’s involvement appears
quite simple. As the demand for transplants has increased, predominantly
with the expansion of the number of transplant programs, there simply
are not enough donors to meet the needs of all potential recipients.
This has led to an increase competition among transplant centers
for the limited supply of donor livers.
When transplantation was in its infancy, several centers grew to
very large size simply because they were the only places transplants
could be performed. As the knowledge and technology has spread across
the country, transplants are no longer confined to limited areas
in the country. This has allowed patients to received transplants
close to their homes and families.
However, as the limited number of available organs has also been
spread across the country, these major transplant centers have watched
the number of transplants performed steadily decrease. Because UNOS
is an organization that represents all transplant centers, not just
the special interests of the large metropolitan transplant centers,
these larger centers tried, unsuccessfully, to force UNOS into policies
that would favor the larger centers. Once they failed to change the
present policies through the usual route, these larger transplant
centers took an alternative route - using their political clout to
influence the federal government to change the way it has been involved
in organ donation over the last 20 years.
By performing an end run on UNOS, the organization
that is supposed to represent all transplant patients and professionals,
and putting political pressure on the federal government, these
organizations are now unabashedly claiming victory. There is no
doubt in the transplant community that Shalala’s decisions
have been based on the political pressure applied by these large
transplant centers.
Based on the available scientific data, the changes proposed by
the secretary will reduce the number of first-time liver transplants,
increase the number of repeat transplants, reduce the success rate
of liver transplants, and dramatically increase the costs. For Houston
patients awaiting a transplant, this policy will certainly have other
far-reaching, negative implications.
The present system puts first priority on local
use of donated organs before sharing with the rest of the country.
Because Houston has, through its local organ procurement agency,
LifeGift, made outstanding gains in the education of the public
regarding the need for organ donation, Houston has become one of
the country’s leaders in
the number of organ donors, and therefore has increased the number
of organs available to local patients. If the proposed system is
implemented, Houston organs will no longer be available for Houston
patients first. Our patients, in general, have been transplanted
reasonably quickly, but under Shalala’s proposal, organs will
be given to patients nationwide who have been waiting the longest
and have the same medical need. This means a large number of organs
will be leaving Houston but few will be returning.
Quite simply, this tragically will mean an increase
waiting time in the Houston area for patients needing organ transplants
such as hearts and livers and an increasing death rate of death
for our patients awaiting lifesaving transplants. And the future
remains uncertain for a little 4-year-old girl with liver cancer
who will not "fit" Shalala’s
criteria of who should receive a liver transplant.
Never before has the federal government unilaterally decided on
a policy which has had such far-reaching implications on a medical
procedure. If there were a shortage of parts for cars, would the
federal bureaucracy preferentially send parts to only those automobile
manufacturers that were the largest or the oldest or had the best
political connections? This appears to be exactly what Shalala is
doing with the limited supply of donor organs.
By bypassing the transplant professionals who have always made and
implemented policies related to organ transplantation, the secretary
has greatly overstepped her bounds. Unless this situation can be
rectified, organ transplantation policies will no longer be decided
by the professionals in the field but by those who have the most
political influence.
(Appeared in the Houston
Chronicle Section A Page 25, Thursday April
9, 1998)
TLC Update:
The period for public comment was extended to August 31st, and the
date of the decision for implementation was moved to October 1st.
On June 18th there was a joint Congressional hearing for Congress
to investigate its role in the decision making process.
