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About TRIO
Mission Statement
Testimony of Bruce Weir, President Transplant Recipients
International Organization, Inc. before the joint hearing of the Senate
Labor Committee and the House Commerce Subcommittee on Health and
Environment
Thursday, June 18, 1998.
"Putting patients first: resolving the allocation of transplant
organs"
Good morning. Senator Frist, Senator Jeffords, Congressman
Bilirakis, and other members of the committees. I would like to thank
you for the opportunity to testify before this joint congressional
session.
My name is Bruce Weir. I'm the president of Transplant Recipients
International Organization, or "TRIO," as we are better known. TRIO
represents several thousand members who are organ transplant
recipients, candidates, donors, family members, health-related
professionals and others. But mostly recipients - people who have "been
there, done that". Like me.
Ten years ago today, I was in a bed at the Cleveland clinic, having
been told just the day before that I needed a heart transplant to save
my life. Ten years ago, tomorrow is Father's Day, my wife and daughters
will be with me for what very well could be my last father's day. I
just turned 51 and I'm scared. It wasn't until I was transplanted and
back home that it all began to sink in as to what I and my family had
just gone through. Each of these past ten years, I realize even more
how lucky I was to have received a life-saving transplant on what my
transplant team tells me would have been the last day of my life. I
made up my mind as I regained my strength to return to work and that I
would do what I could to help the tens of thousands who would replace
me on the waiting list in the years to come. So here I am.
We have had a national organ transplant system in place for the past
twelve or so years. It has worked and continues to work. Could it be
better? Of course it could. What can't be improved?
As we know, the United Network for Organ Sharing, or UNOS, as it is
known, holds the contract with the federal government to operate the
Organ Procurement & Transplant Network (OPTN). The Department of
Health and Human Services (HHS) has had a responsibility to see that
the system is working as intended. I don't feel that this has been
done. This past March, the Secretary of HHS took steps to close the
loop and fill the gaps in the system. Long overdue steps, I might add.
These regulations put HHS back into its rightful position as overseer
of this system.
TRIO has had, and continues to have, positive involvement with the
system. Three current members of our board of directors are: a member
of UNOS' Board of Directors; a member of UNOS' Membership and
Professional Standards Committee and a member of UNOS' Patient Affairs
Committee (me). Another member of our Board of Directors is a former
member of the Patient Affairs Committee and a former member of our
board is currently a member of the Patient Affairs Committee. Hence, we
have been closely involved and informed on this issue.
Unlike every other faction involved in this current debate, TRIO is
the only one with no affiliation or financial interest in the outcome
of these discussions. Our only interest is that of the patients - those
poor souls whose lives hang in the balance. Waiting - waiting -
waiting.
This is not to say that our individual chapters are not as
un-affiliated: many are very close to their transplant center or local
organ procurement organization (OPO), some of them being started by or
partially supported by these institutions. This accounts for the
apparent disparity among some of our local chapters on this position -
but not at the national level. We have looked at the current situation
and have taken the stance that these regulations are an improvement to
a good system that must get better. There are too many good things in
here that cannot and must not be left out to dry while stalling tactics
and certain issues are debated ad infinitum.
We are dismayed at the dis-information being bandied about:
- Organ donation rates will drop if organs are not always used
locally
Donor families tell us that geography was the last thing they would
have thought of. They only hoped their gift would save a life. The
donor family council testified at the December 1996 HHS hearings that
their studies indicated that families "did not care" where the organs
went.
- Small transplant centers will close
Why would they? If the transplant community had devoted as much
energy to solving the real problem of organ allocation -increasing the
number of organ donors in this country - as it is expending in dollars
and emotional effort in this debate over how to allocate what we have,
we would be much further ahead than we are.
So, why not have an allocation system that gives everyone on the
list a relatively equal waiting time for their second chance at life?
Why not have standardized criteria for listing a person for a
transplant? Why not have standard criteria for evaluating a change in
status for someone on the list? Why not have broader representation
from the public sector on the board of directors of the OPTN?
What are the real objections to these issues, which the regulations
make a positive and credible attempt to solve? Just whose interests are
we looking out for here? I can tell you that TRIO is looking out for
the patients - those practically 60,000 currently on the list and
certainly the thousands and thousands to follow. We are not a
transplant center (large or small); we are not an OPO; we are an
independent, not-for-profit organization for candidates, recipients,
donors and their families. We are not paid by any of them.
When every player can look me in the eye and say his primary
interest in all this is improving the lot of the patients, our job will
be done - but only for the moment. For this process, like all things,
is constantly changing, and, as such, must continually be reassessed
and fine-tuned. These regulations are just another reassessment and
fine-tuning, albeit overdue. TRIO's position is clear. . . .putting
patients first. Not many things in life are perfect. This regulation is
no exception, but it goes a long way in meeting our goal . . . .of
putting patients first. We support these regulations as a way to move
forward. We must not delay any longer. The regulations, as published,
strike that balance between putting patients first and turning to the
medical profession to establish how they can make it happen.
In closing, I would like to share with you a line I ran across as I
was researching for this testimony. "An organ allocation system should
focus on equity among patients, not among transplant centers."
Respectfully submitted,
Bruce Weir
President, Transplant Recipients International Organization,
Inc.
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