Facts and Fiction about Organ Donation How You Can Make a Difference

1
Facts and Fiction about Organ Donation How You
Can Make a Difference ?

• M. P. Short, MD
• American Medical Association
• May 31, 2000

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Overview

• The challenge of blood and organ donation.
• The need for organ donation.
• Goals and activities of the National Initiative.
• Example of effective collaboration.

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Blood and Organ DonationSimilar Challenges

• Dependent on altruism no payment for donation.
• Minority of supporters actually give (85 support
  organ donation but only half consent less than
  5 of eligible Americans give blood regularly).
• Adequate substitutes not yet available.

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Blood and Organ DonationSimilar Challenges

• Growing gap between demand and supply
• (e.g., aging of population, medical advances).
• Misconceptions and mistrust play a role
• (e.g., organs fear medical care will be
  withdrawn blood fear of contracting HIV).

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The Gap Continues to WidenOrgan Donors,
Transplants, Waiting List at Years End
1988-1998
Data from UNOS OPTN Scientific Registry.
Data include cadaveric and living donors.
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Organ Shortage Claims LivesNumber of Deaths on
the Waiting List 1988-1998
Data from UNOS OPTN Scientific Registry as of
February 24, 1999
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Every 16 minutes, another name is added to the
waiting list. Every day, 12 people will die
while awaiting a transplant.
8
Racial/Ethnic Distribution Population and Organ
Donation, 1998 (Percent)
1996 Population data taken from U.S. Bureau of
the Census. Percent donation is based on
9,371cadaveric and living donors in 1998
excluding cases in which race was unknown. Data
based on UNOS OPTN/Scientific Registry as of
September 7, 1999.
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Kidney Transplant Waiting List by
Race/Ethnicity, 1998
34.9
46.6
1.9
Total 46,595
5.3
11.4
Based on UNOS OPTN/Scientific Registry data as
of February 24, 1999.
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National Initiative Goals

• Increase consent to donation.
• Maximize opportunities for donation.
• Learn more about what works to increase donation.

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GOAL IIncrease Consent to Donation

• Conduct campaigns to build public awareness and
  commitment.
• Focus on family discussions to honor donation
  intent Share your life. Share your decision.
  The National Campaign launched by the
  Vice-President in 1998.
• Honor donors and donor families.
• Lead by example AMAs Live and Then Give

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GOAL II Maximize Opportunities for Donation

• Implement Hospital Conditions of Participation
• Report all imminent deaths and deaths to OPOs.
• Educate staff train designated requestors.
• Review death records.
• Maintain potential donors.
• Encourage stronger collaborations among
  hospitals, OPOs, tissue banks, and eye banks and
  healthcare professionals.

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Are You an Organ Tissue Donor?
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National Donor Day Collaboration

• Results In first 3 years, raised over 25,000
  units of blood, added nearly 4,100 potential
  marrow donors to NMDP Registry, and distributed
  tens of thousands of organ and tissue donor
  cards.
• Elements for future success new partners,
  participation of donor families and recipients,
  increased commitment by current partners.

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National Donor Day Collaboration

• Americas largest one-day annual donation drive
  for the Five Points of Life (organs/tissues,
  marrow, whole blood, platelets, cord blood) held
  at over 400 Saturn/UAW retailers nationwide.
• Partners reflect the Five Points e.g., AABB,
  ABC, ARC, NMDP, NKF, ALF, HHS, and related
  medical professions, e.g., AMA, ENA.

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June 21-24, 2000 Disney Wide World of Sports
Complex
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Coalition on Donation is a not-for-profit
alliance of local coalitions and national
organizations who have joined forces to promote
organ and tissue donation.
Many lives could be saved if more people became
organ donors. Thats why Im doing my part to
help in this important efforts. Please make the
decision to become an organ donor and tissue
donor. Its the right thing to do.
--Michael Jordon
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Increased Public Awareness of Organ
Donation Recent Release Return to Me
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Where does the public hear about organ donation?

• Media
• Motor Vehicle Departments
• Healthcare professionals are Number 5 as a source
  of information about organ donation
• Why? Uncomfortable with the subject, maybe unsure
  of facts about organ donation

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Fiction
Wealthy people and celebrities are moved to the
top of the list faster than regular
people, Fact The organ allocation and
distribution system is blind to wealth and
social status. The length of time it takes to
receive a transplant is governed by many factors,
including blood type, severity of illness, and
other medical criteria. Length of time on waiting
list is being re-evaluated as a factor in light
of IOM report.
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Fiction Donation will mutilate my
body. Fact Donated organs are removed
surgically, in a routine operation similar to
gallbladder or appendix removal. Donation
doesnt disfigure the body or change the way it
looks in a casket. Fiction My family will be
charge for donating my organs. Fact Donation
costs nothing to the donors family or estate.
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Fiction If I am in an accident and the hospital
knows that I want to be a donor the doctors will
not try to save my life. Fact Organ and tissue
recovery takes place only after all efforts to
save your life have been exhausted and death has
been legally declared. The medical team treating
is completely separate from the transplant team.
The organ procurement organization (OPO) is not
notified until all lifesaving efforts have failed
and death has been determined. The OPO does not
notify the transplant team until your family
has consented
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Fiction I am not the right age for
donation. Fact Organs may be donated from
newborns on up. The general age limit for tissue
donation is 70. At the time of our death, the
appropriate medical professionals will determine
whether your organs are usable. Fiction My
religion does not support donation. Fact All
mainstream organized religions approve of organ
and tissue donation and consider it an act of
charity.
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Fiction Only heart, liver, and kidneys can be
transplanted Fact Needed organs include the
heart, kidneys, pancreas, lungs, liver,
and intestines. Tissues that can be donated
include the eyes, skin, bone, heart valves, and
tendons. Fiction I have a history of medical
illness. You would not want my organs
or tissues. Fact At the time of death, the
appropriate medical professionals will
review your medical and social histories to
determine whether or not you can be a donor.
Best to sign a donor card and tell your family.
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Fiction I dont need to tell my family that I
want to be a donor because I have it written in
my will. Fact By the time your will is read, it
will be too late to recover your organs. Telling
your family now that you want to be an organ and
tissue donor is the best way to ensure that your
wishes are carried out. Fiction Ive heard
about a business traveler who is drugged, then
awakes to find he or she has had one kidney (or
sometimes both) removed for a black market
transplantation. Fact This tale has been widely
circulated over the Internet. There is
absolutely no evidence of such activity ever
occurring in the US or any other industrialized
country. It is illegal to buy or sale organs.
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How to get the information that you need to have
that critical conversation with your patients?
And get needed CME.
New on ROBI.org...ROBI Interactive Education
Program Regional Organ Bank of Illinois is
committed to provide quality education regarding
organ tissue donation as well as
transplantation, . http//www.robi.com/cme/defaul
t.asp
27

.
Thomas Dickens, Moline, Illinois Liver Recipient,
4th Grade Without having my liver transplant, I
could not do fun things with my family because I
would be too sick. I would like to say thank you
to the donor and his family.