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By the Numbers 114,535 Men, women and children hoping for a live-saving organ transplant
11,092 Texans waiting for their second chance at life
18 People die each day waiting
8 Lives saved by one organ donor
22,518 People saved nationally in 2011 because of organ donation Every 12 minutes a new name is added to the national transplant list
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“Be the change that you want to see in the world.” — Mahatma Gandhi
Mission
TOSA
To maximize quality organ donation within the Texas Organ Sharing Alliance service area and to provide the regional transplant centers and the National Organ Procurement and Transplantation Network with a professional and responsive organ recovery program. In so doing, the Texas Organ Sharing Alliance will constantly maintain the utmost consideration and concern for the donor family, the potential donor and donor hospital staff.
Dear Central and South Texas Communities, According to national surveys, 90% of Americans support organ donation but only 35% of Americans know the essential steps to be a registered donor. It appears that Texans may follow the same trend. The current census reports Texas population at 25,145,561 and as of June 2012 more than 2,528,000 Texans were registered on the Donate Life Texas Registry. Even though great strides have been made to increase awareness about the official Texas registry, the number of registered donors continues to be marginal. As the need for donated organs continues to rise, there is urgency for Texas Organ Sharing Alliance (TOSA) to speak out on the shortage of donated organs. TOSA takes great pride in our community and values the compassion our citizens have in contributing to a better quality of life to those in need of lifesaving transplants. We are committed to conducting donationrelated activities to increase public education about the benefits of donation, making our citizens aware that transplantation works and that each of us can help by becoming a registered donor. At TOSA, we encourage you to become informed and be inspired to embrace the necessary steps to becoming a registered donor. The best way to become informed is by getting involved in the donation cause – there are many opportunities. For those unable to dedicate time, the following pages were designed 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.
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 community donor awareness. Central Region (Headquarters) 8122 Datapoint Drive, Suite 200 San Antonio, Texas 78229 210.614.7030 O 210.614.2129 F Northern Region 7000 North MoPac, Suite 325 Austin, Texas 78731 512.459.4848 O 512.459.7794 F Southern Region 1400 N. McColl Road, Suite 104A McAllen, Texas 78501 956.630.0884 O 956.687.7185 F
Follow us on: Thank you in advance for your continued commitment – should you have any questions about how you can make a difference, please contact Esmeralda “Mela” Perez, TOSA Manager of Communications and Community Development, at 210.618.5052 or by email at mperez@txorgansharing.org.
www.txorgansharing.org www.save8.org 1.866.685.0277
Sincerely,
Patrick J. Giordano, MHA, FACHE Chief Executive Officer
Glenda Dawson Donate Life Texas Registry
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Organ, Eye and Tissue Donation — NATIONAL STATS
You Make the Difference Who is the Texas Organ Sharing Alliance? The Texas Organ Sharing Alliance (TOSA) is one of only 58 nonprofit 501(c)(3) independent, federally designated Organ Procurement Organizations (OPOs) in the United States dedicated to educating and providing organ donation and recovery services to families wishing to donate and to those waiting for life-saving organ transplants. Founded in 1975, TOSA serves 56 counties in Central and South Texas.
114,535 Approximate number of People on the national transplant waiting list
18 Average number of people on the waiting list who will die today
12
The National Initiative
Every 12 minutes a new name is added to the national transplant list
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 States. Each state formed a team of partners committed to making this happen. The initiative played an important role in forging and strengthening partnerships with the Department of Public Safety (DPS) nationwide.
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 People on the national transplant waiting list wait for weeks, months, even years until an organ will become available for them. Many die waiting for a vital organ transplant. Median time to transplant for the most recent year data is:
Kidney — 1,219 days Pancreas — 260 days Kidney-Pancreas — 448 days Liver — 361 days Intestine — 159 days
Why the need? As of June 11, 2012, over 114,535 men, women and children were waiting for life-saving organ transplants in the United States. Over 11,092 are in need in the State of Texas, with an estimated 4,862 living 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 received one in time, amounting to thousands of lives lost each year.
Why does becoming a registered donor matter? Many families don’t discuss the idea of donation prior to death. When there is no license/ID donor designation, grieving families sometimes feel conflicted by not knowing what their loved one would have wanted. When a donor designation is available, the donor’s wishes can be honored, removing the burden of the decision from family. Families often draw comfort and reassurance from having this knowledge. Over 97 percent of donor registrations come directly from the DPS. A simple “yes” to the donation question from a DPS examiner could be the one that saves lives. Since the DDC launched in 2006, such partnerships 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 people. Donor education is the vehicle to our community’s understanding about the critical shortage and need for donors. As the organization federally designated to serve Central and South Texas, TOSA is committed to conducting donation-related activities. Through these coordinated activities related to public education about the benefits of donation, we increase donor awareness and the number of people registered on the Glenda Dawson Donate Life Texas Registry. Visit www.donatelifetexas.org or www.donevidatexas.org.
Heart — 113 days Lung — 141 days
Included in this publication are special stories of lives that have been touched by donation, illustrating the profound impact that one individual has on the donation process; facts, frequently asked questions, myths and misconceptions and resource links to assist our community in creating a donation-friendly society.
For more information and resources, please visit www.donatelifetexas.org or www.donevidatexas.org or call 1.866.685.0277.
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The Wait . . . STATE OF TEXAS STATS 11,092 Approximate number of Texans on the national transplant waiting list ETHNICITY 45.5% Hispanic 30.4% Caucasian 21.1% African American AGE 18-34 years – 9.1% 35-49 years – 25.8% 50-64 years – 47.9% 65+ – 15.6% THE 11,092 MEN, WOMEN AND CHILDREN ARE AWAITING THE FOLLOWING ORGANS: 8,757 – Kidney (79%) 1,820 – Liver (16.4%) 406 – Heart (3.6%) 134 – Kidney/ Pancreas (1.2%) 151 – Lung (1.3%) 60 – Pancreas (.5%) 5 – Heart/Lung (.05%) 1 – Intestine (.009%) People aged 50 and older make up the largest age group on the organ transplant waiting list. ORGAN DONORS CAN BE OF ANY AGEEVEN SENIOR CITIZENS. No one should let age stop them from registering a donation decision.
Lupe Silva is a longtime TOSA volunteer who enjoys spreading the message of organ donation. Lupe doesn’t let his illness stop him from his life-saving mission. Even though he has been waiting for a kidney for six years and undergoes dialysis for four hours a day, three days a week, he continues to volunteer in various ways, including staffing health fairs and doing media interviews. He is especially passionate about educating Hispanics about the importance of being organ donors. He also encourages dialysis patients to get educated about kidney transplants and to “never give up” as they wait for their life-saving gift.
The Difference . . .
After playing in a varsity basketball game in which she made 19 baskets, Abigail DeAnda was riding home with friends when tragedy struck. As a result of the accident, she suffered severe head trauma and was pronounced brain-dead four days later. The DeAnda family was faced with the tragedy of losing a daughter and donating their daughter’s organs to provide a life-saving transplant for up to eight individuals awaiting a second chance at life. Today, they honor their daughter by volunteering and sharing their special donation story. They are a testament to making a difference in someone’s life — actually six lives were saved because of their commitment to donate.
The Commitment to Life . . .
James P. Balthazar passed away May 15, 2012, but not before sharing his special story with thousands of people who crossed paths with him during the period of volunteering. His commitment to educate and inspire people to register on the Donate Life Texas Registry never wavered during the many hours he gave at health fairs, healthcare best practice classes and media interviews. Jim, as most of us knew him, received his second chance at life in January of 1995 after suffering 13 heart attacks. He had been on the waitlist for a life-saving heart transplant for eight days. And as he put it, “I received a 67-year-old Texas woman’s heart and have enjoyed my life and family each day more than the previous day.” Jim was a loving and devoted husband and father, as well as a longtime TOSA, Lone Star Transplant Association and Vital Alliance volunteer. His presence, humor and dedication to the organ, eye and tissue donation cause will be greatly missed.
For more information and resources, please visit www.donatelifetexas.org or www.donevidatexas.org or call 1.866.685.0277.
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A few of the people who have received a
Second Chance at Life
Together we can create a donor-friendly community. To become a Friend For Life Volunteer call 1-866-685-0277.
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NATIONAL SURVEY: 90% Americans support organ donation
35% Americans know essential steps to be a registered donor
DONATE LIFE TEXAS REGISTRY
25,145,561 Population of Texas
6,287,454 Population in the TOSA Service Area
2,528,000 Registered on the Donate Life Texas Registry
TOSA
(Central & South Texas) Represented on National Waiting List
There are 4,862 waiting for a transplant. 4,445 – Kidney 303 – Liver 36 – Pancreas 40 – Kidney/Pancreas 33 – Heart 47 – Lung 0 – Heart/Lung 0 – Intestine
Tens of thousands of others need corneas to restore sight, bone and other tissues to repair injured or diseased bones and joints, skin to heal burns, and the heart valves to replace diseased ones.
How You Can Help:
Programs and Resources Contact: Esmeralda “Mela” Perez, Manager of Communications and Community Development, Texas Organ Sharing Alliance, mperez@txorgansharing.org, 1.866.685.0277
The Workplace Partnership for Life (WPPL): A national initiative, created in 2001,that unites the U.S. Department of Health and Human Services (HHS) with the organ, eye and tissue donation community and businesses, organizations and associations to encourage the American public to become registered donors. This nationwide network of more than 11,000 “Partners” include local, regional and national companies, associations, unions and academic, volunteers, philanthropic and community-focused organizations of all kinds. Their shared goal is promoting a “donation-friendly America” by fostering donation education and creating opportunities for individuals to sign up to save lives through organ, eye and tissue donation. www.organdonor.gov/workplace
monial CDs can be good resources to help the public make an educated, informed decision about donation. While there are numerous community outreach initiatives to educate the general public, public knowledge could still be improved. Multimedia Education: Businesses are encouraged to incorporate messages as a screensaver on picture preview monitors, scrolling marquee screens or LCD monitors to inform the public about specific activities as well as education about donation. LCD monitors also offer the opportunity to show short clips of personal testimonials and facts about donation. Volunteer Tabling: Volunteer tables in the community can be a great resource for the public to receive information and ask specific questions about donation. In some cases, the public may have the opportunity to meet a recipient or donor family member who has directly benefited from donation.
National Donation Campus Challenge: The campaign launched in 2009 brings together organ, eye and tissue donation organizations on the critical need for organ, eye and tissue donors and to increase donor registration. Go to www.organdonor.gov/workplacechallenge.asp.
Employee Newsletters: The business community is encouraged to insert thank you testimonials from recipients and donor families, a calendar of community events and stories of employees who have been personally touched by donation into their employee newsletters.
Decision Donation: A school program that gives the gift of life: Decision Donation proves a multifaceted set of materials – print, video, CD-ROM and Web-based – that teachers throughout the country can use in a variety of subject areas to educate students and encourage them to consider organ, eye and tissue donation. www.organdonor.gov/student/materials.asp
Online Registration: Though most donor registrations occur within DPS field offices, online portals now play an essential role because they enable customers to register online in between registration and renewal cycles. TOSA has specific social networking pages on Facebook and Twitter to help reach these audiences. www.SAVE8.org.
Friends for Life: The value of giving back: Men, women and children on the national waiting list continue to be inspired by what is being done by individuals, communities and the donation and transplant centers to build enough to give of their time to make a difference in their community. Yet more volunteers are needed to teach others what more can be done in our home, workplace, place of worship and community to save lives. For more information about becoming a Friends for Life volunteer, you can call TOSA Donor Family and Volunteer Services at 210.614.7030 or toll free at 1.866.685.0277. www.txorgansharing.org.
Onsite Dollar Contribution: In addition to “making the ask” about donation, many DPS’s ask customers if they would like to contribute a dollar to benefit a state organ, eye and tissue trust fund. Such requests have yielded thousands of dollars annually to fund educational outreach programs to educate the public about donation.
Customer Access to Educational Materials: Posters, brochures and testi-
For more information and resources, please visit www.donatelifetexas.org or www.donevidatexas.org or call 1.866.685.0277.
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Frequently Asked Who can become a donor?
FAST FACTS One donor can save 8 lives or enhance the lives of over 50 people by:
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? Donating kidneys to free two people from dialysis treatments needed to sustain life. Saving the lives of patients awaiting heart, liver, lung or pancreas transplants. Giving sight to two people through the donation of corneas. Donating bone to repair injured joints or to help save a limb threatened by cancer. Helping burn victims heal more quickly through donation of skin. Providing healthy valves for someone whose life is threatened by malfunctioning or diseased valves.
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.
Questions ing 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.
How many people are currently waiting for a transplant? As of June 2012, there were over 114,535 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.
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.
Can I be an organ and tissue donor and also donate my body to medical science?
Organs: heart, kidneys, pancreas, lungs, liver and intestines. Tissue: cornea, skin, bone marrow, heart valves and connective tissue.
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.
Are there any costs to my family for donation?
If I have a previous medical condition, can I still donate?
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.
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.
What can be donated?
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 sell-
For more information and resources, please visit www.donatelifetexas.org or www.donevidatexas.org or call 1.866.685.0277.
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FAST FACTS In 2011, the number of men, women and children who received the “gift of life” from a deceased organ donor was 22,518.
In 2011, the number of Deceased Donors Recovered in the Nation, State and Region was: United States 6,779 Texas 533 TOSA Region 105 Of all the deaths in the United States, only 1 to 2 percent have the potential to result in organ donation. Unfortunately, only about 65 percent of those individuals actually donate. If everyone who could donate said yes, the waiting list for transplants would be greatly reduced.
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.
Myths: 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 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.
For more information and resources, please visit www.donatelifetexas.org or www.donevidatexas.org or call 1.866.685.0277.
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2012 Texas Organ Sharing Alliance
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.
In 2011, there were 105 Central and South Texas organ donors who made it possible for 368 men, women and children to have a second chance at life. Currently, there are more than 11,092 Texans awaiting a life-saving heart, liver, lung, small bowel, kidney and/or pancreas transplant. Of those waiting, 45.5% are Hispanic, 30.4% are Caucasian and 21.1% are African American. If TOSA is to continue its mission to increase donation awareness and provide organs for those on the waiting list, support from all levels of the community is critical.
The following chart shows the number of organs transplanted. There were 105 organ donors and 368 organs transplanted.
Kidney Pancreas Liver Heart Lung Small Bowel
For more information and resources, please visit www.donatelifetexas.org or www.donevidatexas.org or call 1.866.685.0277.
159 18 94 35 58 4
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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! Central Region (Headquarters) 8122 Datapoint Drive, Suite 200 San Antonio, Texas 78229 210.614.7030 O 210.614.2129 F 1.866.685.0277 toll free Northern Region 7000 North MoPac, Suite 325 Austin, Texas 78731 512.459.4848 O 512.459.7794 F Southern Region 1400 N. McColl Road, Suite 104A McAllen, Texas 78501 956.630.0884 O 956.687.7185 F Follow us on:
Glenda Dawson Donate Life Texas Registry www.donatelifetexas.org www.donevidatexas.org