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2013
Glenda Dawson Donate Life Texas Registry • www.donatelifetexas.org • www.donevidatexas.org
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W EDITOR
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“Where there is great love there are always miracles.” — Willa Cather
The Texas Organ Sharing Alliance (TOSA) mission is “Saving Lives by Optimizing Organ Donation.”
Dear Central and South Texas Communities,
GOVERNING BOARD Vince Speeg, MD, Chair
The challenge facing TOSA is the ever-increasing list
Charles P. Andrews, MD, CPI
of children and adults being added to the national
Glenn Halff, MD
waiting list for a life-saving organ transplant — every
Michael Horton, PharmD
11 minutes a new name is added. Across the United
Bruce Mitchell
States, in the state of Texas and within our service
Jerry Morrisey, PhD
area, donation and transplantation centers are in the
Beverly Purcell-Guerra
midst of a difficult situation — to meet the community’s demand for life-saving transplantable organs.
Daniel Stanton Ken Washburn, MD Anne Williams
There is an opportunity to change the direction of the donation and transplantation trends — but it will not be easy. It begins with mobilizing our citizens to act together as a community for the common good of saving lives. The first step is to become informed about why there is a critical need for donated organs. The second step is to be proactive to decrease the rate at which people are being added to the list. For example, there are more than 11,500 Texans waiting for their “Gift of Life.” Of those, 80 percent (over 9,000) are waiting for a donated kidney due to diabetes and high blood pressure health issues, which may have been a result of an unhealthy lifestyle. We must begin living a healthier life if these numbers are to decrease. In addition, creating a donor-friendly community by sharing your donation wishes with your family and becoming a registered donor (www.donatelifetexas.org) will increase the number of life-saving transplants. The following pages are dedicated to highlight TOSA’s role in the community, answer the most commonly asked questions, address myths and misconceptions and provide information on the necessary steps to become a registered donor. Thank you in advance for your commitment to the cause of saving lives. Should you have any questions about how you can make a difference, contact Esmeralda “Mela” Perez, director of public relations, at (210) 618-5052 or by e-mail at mperez@txorgansharing.org. Sincerely,
Patrick J. Giordano, MHA, FACHE Chief Executive Officer
For more information and resources, please call 1-866-685-0277.
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Transplants: The Numbers Don’t Lie TEXAS
NATIONAL
11,574
118,145
Approximate number of Texans on the national transplant waiting list
Approximate number of people on the national transplant waiting list
*As reported by the United Network for Organ Sharing (UNOS) on May 30, 2013. For a daily update visit www.unos.org.
It’s hard to believe that every 11 minutes a new name is added to the national life-saving organ transplant waiting list.
What is more startling to believe is 18 people will die today because of the shortage of donated organs.
Median time for a life-saving organ transplant and the number of people in Texas waiting for specific organ donation:
Lung 141 days 187 Texans
Kidney 1,219 days 9,251 Texans
Pancreas 260 days 52 Texans
Heart 113 days 426 Texans
Kidney/Pancreas 448 days 138 Texans Intestine 159 days 1 Texan Liver 361 days 1,777 Texans
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Adults and children wait for weeks, months... even years until a transplantable organ becomes available. The need for donated organs far exceeds the supply. A Special Section from San Antonio Woman
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Organ, Eye and Tissue Donation You Make the Difference Who is the Texas Organ
sometimes feel conflicted by
Sharing Alliance?
not knowing what their loved
The Texas Organ Sharing Al-
one
liance (TOSA) is one of only 58
When a donor designation is
nonprofit 501(c)(3) independ-
available, the donor’s wishes
ent, federally designated Organ
can be honored, removing the
Procurement
would
have
wanted.
Organizations
burden of the decision from
(OPOs) in the United States
family. Families often draw
dedicated to educating and
comfort and reassurance from
providing organ donation and
having this knowledge. Over
recovery services to families
97 percent of donor registra-
wishing to donate and to those
tions come directly from the
waiting for life-saving organ
DPS. A simple “yes” to the do-
transplants. Founded in 1975,
nation question from a DPS ex-
TOSA serves 56 counties in
aminer could be the one that
Central and South Texas.
saves lives.
Since the DDC
launched in 2006, such partThe National Initiative In 2006, Donate Life America launched the Donor Designation Collaborative (DDC) to share best practices and focus on creating high-functioning registries to dramatically increase the number of designated donors in the United
Do you have a heart... on your driver’s license or ID?
nerships have contributed to a 50-percent increase in designated donors nationwide. Making an informed decision… Making the decision to become a registered organ, eye and tissue donor is not easy for some
States. Each state formed a
people. Donor education is the
team of partners committed to
vehicle to our community’s un-
making this happen. The initiative played an important role in forging
derstanding about the critical shortage and need for donors.
and strengthening partnerships with the Department of Public Safety As the organization federally designated to serve Central and South
(DPS) nationwide.
Texas, TOSA is committed to conducting donation-related activities. Why the need?
Through these coordinated activities related to public education about
As of May 31, 2013, over 118,145 men, women and children were
the benefits of donation, we increase donor awareness and the number
waiting for life-saving organ transplants in the United States. Over
of people registered on the Glenda Dawson Donate Life Texas Registry.
11,574 are in need in the State of Texas, with an estimated 5,008 liv-
Visit www.donatelifetexas.org or www.donevidatexas.org.
ing in Central and South Texas. Because there is a critical shortage of organs to meet this need, 18 people will die today from not having
Included on these pages are special stories of lives that have been
received one in time, amounting to thousands of lives lost each year.
touched by donation, illustrating the profound impact that one individual has on the donation process. And on the pages to follow, you
Why does becoming a registered donor matter? 6
will find facts, frequently asked questions, myths and misconceptions
Many families don’t discuss the idea of donation prior to death.
and resource links to assist our community in creating a donation-
When there is no license/ID donor designation, grieving families
friendly society.
A Special Section from San Antonio Woman
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Living & Giving Stories
Bonnie Kwan Sister Michele O’Brien
Heart Recipient and Dr. Michael Kwan
Dr. Vince Speeg, Governing Board Member, and Sister Michele O’Brien, Liver Transplant Recipient
Gloria Arredondo Donor Mom of Timothy Eleven year-old Timothy became an organ donor as a result of a hit-and-run accident. Through the donation of his organs he saved four lives. Gloria and Joe, the parents of Timothy, have spoken with Jennifer, Timothy's heart recipient. Timothy's older brother, Mateo, had the pleasure of meeting Jennifer and her family this past year. As a donor family, they speak as a testament that after every attempt to save his life was
Zackry Baza Small Bowel, Pancreas and Liver Recipient
made and when death occurred, organ donation is about giving others a second chance at life — the "Gift of Life."
Fleming Mitchell Heart Recipient In March of 2004, Fleming had a massive heart attack. Soon after, he was placed on the national waiting list for a heart transplant. During the waiting period, he wondered if he would get a second chance at life. After waiting for more than a year for a life-saving heart transplant, his new donated heart arrived. On the way to the hospital, the ambulance carrying Fleming's new heart was involved in an accident. The medical personnel had to physically run to the hospital with the new heart and arrive just in time for the heart to be transplanted. Today, Fleming is very active advocating for organ donation, playing golf and enjoying life to the fullest. He says, "I thank God every day for the family who believed in donating life to someone like me who was facing death. This experience has changed my outlook on life and given me a better understanding and appreciation for the love of humanity."
For more information and resources, please call 1-866-685-0277.
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How You Can Help: Programs and Resources Contact: Esmeralda “Mela” Perez, director of public relations , Texas
public about spe-
Organ Sharing Alliance, mperez@txorgansharing.org, 1-866-685-0277.
cific activities as well as education
The Workplace Partnership for Life (WPPL): A national ini-
about donation.
tiative created in 2001, unites the U.S. Department of Health and
LCD
Human Services (HHS) with the organ, eye and tissue donation com-
also offer the op-
munity, businesses, organizations and associations to encourage the
portunity to show
American public to become registered donors. This nationwide net-
short clips of per-
work of more than 11,000 “Partners” includes local, regional and
sonal testimonials
national companies, associations, unions and academic, volunteer,
and facts about
philanthropic and community-focused organizations of all kinds.
donation.
monitors
Their shared goal is promoting a “donation-friendly America” by fostering donation education and creating opportunities for individuals
Volunteer
to sign up to save lives through organ, eye and tissue donation.
Tabling: Volun-
www.organdonor.gov/workplace.
teer tables in the community can be
National Donation Campus Challenge: The campaign launched
a great resource
in 2009 brings together organ, eye and tissue donation organizations
for the public to
on the critical need for organ, eye and tissue donors and to increase
receive
donor registration. www.organdonor.gov/workplacechallenge.asp.
tion and ask specific
informaquestions
Decision Donation: A school program that gives the gift of life:
about donation. In
Decision Donation proves a multifaceted set of materials — print,
some cases, the
video, CD-ROM and Web-based — that teachers throughout the
public may have
country can use in a variety of subject areas to educate students and
the opportunity to
encourage them to consider organ, eye and tissue donation.
meet a recipient
www.organdonor.gov/student/materials.asp.
or donor family member who has
Friends for Life: The value of giving back: Men, women and chil-
directly benefited
dren on the national waiting list continue to be inspired by what is
from donation.
Gabriel Espinosa, Donor Dad of Jeremy, sharing his personal story at Bucky's Block Party
being done by individuals, communities and the donation and transplant centers to build enough to give of their time to make a differ-
Employee Newsletters: The business community is encouraged
ence in their community. Yet more volunteers are needed to teach
to insert thank you testimonials from recipients and donor families, a
others what more can be done in our home, workplace, place of
calendar of community events and stories of employees who have
worship and community to save lives. For more information about
been personally touched by donation into their employee newsletters.
becoming a Friends for Life volunteer, call TOSA Donor Family and Volunteer Services at (210) 614-7030 or toll free at 1-866-685-0277.
Online Registration: Though most donor registrations occur
www.txorgansharing.org.
within DPS field offices, online portals now play an essential role because they enable customers to register online in between regis-
Customer Access to Educational Materials: Posters,
tration and renewal cycles. TOSA has specific social networking
brochures and testimonial CDs can be good resources to help the pub-
pages on Facebook and Twitter to help reach these audiences.
lic make an educated, informed decision about donation. While there
www.SAVE8.org.
are numerous community outreach initiatives to educate the general public, public knowledge could still be improved.
Onsite Dollar Contribution: In addition to “making the ask” about donation, many DPSs ask customers if they would like to con-
8
Multimedia Education: Businesses are encouraged to in-
tribute a dollar to benefit a state organ, eye and tissue trust fund.
corporate messages as a screensaver on picture preview mon-
Such requests have yielded thousands of dollars annually to fund ed-
itors, scrolling marquee screens or LCD monitors to inform the
ucational outreach programs to educate the public about donation.
A Special Section from San Antonio Woman
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Frequently Asked Questions Who can become a donor? All individuals can indicate their consent to donate (persons under 18 years of age must have parent’s or guardian’s consent). Medical suitability for donation is determined at the time of death. How do I express my wishes to become an organ, eye and tissue donor? Indicate your decision to be an organ, eye and tissue donor on your driver’s license/state ID or visit www.donatelifetexas.org or www.donevidatexas.org. Most importantly, discuss your decision with family members and loved ones. Are there age limits for donors? Everyone, regardless of age or medical history, should consider him/herself a potential donor. Persons younger than 18 years of age must have a parent or guardian’s consent. If I put the donor designation on my driver’s license, will my wishes be carried out? The majority of states in the U.S. honor “first person consent,” meaning that if you qualified to be a donor upon your passing, your wishes will be honored first and foremost and cannot be revoked by any third party. However, it is always good to let your family know that donation is important to you.
How many people are currently waiting for a transplant? As of May 2013, there were over 118,145 men, women and children waiting for a transplant in the U.S. Approximately 300 new transplant candidates are added to the waiting list each month. For additional data, visit the Organ Procurement and Transplantation Network Website: www.optn.org.
What can be donated? Organs: heart, kidneys, pancreas, lungs, liver and intestines. Tissue: cornea, skin, bone marrow, heart valves and connective tissue.
Is the DPS registry associated with living donation? No. All DPS registries are for deceased donation only. If you wish to be a living donor to someone in need, you will need to make arrangements at the recipient’s transplant center. You can contact the National Kidney Foundation at www.kidney.org for more information.
Are there any costs to my family for donation? The donor’s family does not pay for the cost of organ and tissue donation. All costs related to donation of organs, eyes and tissue are paid by the recipient, usually through insurance, Medicare or Medicaid. Funeral expenses remain the responsibility of the family. Can I sell my organs? No. The National Organ Transplant Act (Public Law 98-507) makes it illegal to sell human organs, eyes and tissue in the United States. Violators are subject to fines and imprisonment. Among the reasons for this rule is the concern of Congress that buying and selling of organs might lead to inequitable access to donor organs with the wealthy having an unfair advantage. How are organs distributed? Patients are matched to organs based on a number of factors, including blood and tissue typing, medical urgency, time on the waiting list and geographical location. 10
Apple Leasing hole at the Annual Chip Shot Open Benefiting Donate Life Texas
Can I be an organ and tissue donor and also donate my body to medical science? Total body donation and organ/tissue donation are different processes handled by separate organizations. A driver’s license/ID consent is only for organ, eye and tissue donation. If you wish to donate your entire body, you should directly contact the facility of your choice to make arrangements. If I have a previous medical condition, can I still donate? Determination of suitability to donate organs or tissue is based on a combination of factors that take into account the donor’s general health. This determination is done by the medical staff that recovers the organs or by the transplant team that reviews all of the data about the organ(s), eyes or tissue that have been recovered from the donor. Transplant professionals will evaluate potential donors and determine suitability for donation of particular organs, eyes or tissue when the time for donation arises. Note: Everyone is considered a potential donor; please don’t rule yourself out because of a medical condition.
For more information and resources, please call 1-866-685-0277.
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Myths and Misconceptions Myth: If doctors know you’re a donor, they won’t work as hard to save you. Fact: This is a very common fear. However, this isn’t possible because of the checks and balances built into the system. If you are sick or injured and admitted to the hospital, the doctor’s only job is to save your life. Emergency Room doctors and nurses are not involved in the transplant process and are not affiliated with the team of surgeons who perform organ transplants. Organ transplant can only occur after blood and tissue testing is done in order to match donors and recipients; this is not done by doctors when you enter the hospital. Donation is considered only after death is declared by a physician. Decisions about who receives organs are overseen by the United Network for Organ Sharing (UNOS), which ensures that the system is fair and equitable.
Myth: When you’re waiting for a transplant, your financial or celebrity status is as important as your medical status.
Fact: The UNOS computerized matching system does not select recipients based on fame or wealth. Organs are matched by blood and tissue typing, organ size, medical urgency, waiting time and geographic location.
Myth: Your history of medical illness means your organs, eyes or tissues are unfit for donation. 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. Even if you have had a serious health problem like diabetes, high blood pressure, heart disease, certain types of cancer or even hepatitis, you may still be able to donate at the time of death.
Myth: Organ donation disfigures the body and changes the way it looks in a casket. Fact: Donated organs are removed surgically in a routine operation similar to open heart surgery. Donation does not change the appearance of the body for the funeral service. An open-casket funeral is possible after donation.
Myth: Your religion does not support organ, eye and tissue donation. Fact: All major organized religions approve of organ, eye and tissue donation and consider it an act of charity or leave it up to the decision of the individual.
Myth: Minorities should refuse to donate because organ distribution discriminates by race. Fact: Organs are matched by many factors, including blood and tissue typing, medical urgency and time on the waiting list. A person’s race or ethnic origin does not affect who receives available organs and tissue. Although it is possible for a candidate to match a donor from another racial or ethnic group, transplant success rates increase when organs are matched between members of the same ethnic background. Consequently, a lack of organs donated by multicultural populations can contribute to longer waiting periods for transplantation.
Myth: If I donate, I would worry that the recipient and/or the recipient’s family would discover my identity and cause more grief for my family.
Fact:
Information about donors and recipients is kept strictly confidential. For circumstances in which the donor and recipient families would like to know more about each other, arrangements can be made if permission is obtained from both parties.
Myth: I heard a story that you can be heavily drugged, then wake to find you have had one kidney (or both) removed for a black market transplant.
Fact:
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This is a famous urban legend. While black market transplantation has occurred outside the U.S., it is only a small minority of transplants performed worldwide. The U.S. has a highly regulated system. And if there is even a slight suspicion of illegal activity, the hospital will refuse to perform the transplant. There is no documented evidence of the above scenario ever occurring in the U.S., and it would require removal of the organ by a skilled physician as well as adequate compatibility with a recipient, so the chances of this scenario occurring are highly unlikely. A Special Section from San Antonio Woman
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Texas Organ Sharing Alliance 2012 Report to the Community Each year across the country, thousands of individuals receive a renewed opportunity for life and good health because someone made the decision to donate.
Last 5 years of Donation and Transplantation
415 390 368
353
306
115
116
105
88
94
TRANSPLANT RECIPIENTS
Small Bowel 1
This chart illustrates the 94 donors in 2012, the type of organs transplanted and how many of each.
Lung 60 Heart 41 Kidney 175 Liver 86 Pancreas 20
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18.....Average number of people on the waiting list who will die today 11.....Every 11 minutes a new name is added to the national transplant list 78.....Average number of people on the waiting list who will receive an organ transplant 8.....Number of lives one organ donor could save 75.....Number of lives an organ, eye and tissue donor can save or enhance
For more information and resources, please call 1-866-685-0277.
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Contact TOSA if you would like to: Enroll in the new Glenda Dawson Donate Life Texas Registry. Obtain organ, eye and tissue donation information. Request speakers for schools, churches, civic organizations or health fairs. Become a volunteer and help raise awareness of donation! www.txorgansharing.org
1-866-685-0277
CENTRAL REGION (HEADQUARTERS) 8122 Datapoint Drive, Suite 200 San Antonio, Texas 78229 (210) 614-7030 O (210) 614-2129 F
NORTHERN REGION
SOUTHERN REGION
7000 North Mopac, Suite 160 Austin, Texas 78731 (512) 459.4848 O (512) 459.7794 F
1400 N. McColl Road, Suite 104A McAllen, Texas 78501 (956) 630-0884 O (956) 687-7185 F
Follow us on:
www.save8.org
GLENDA DAWSON DONATE LIFE TEXAS REGISTRY www.donatelifetexas.org
www.donevidatexas.org