2014 national Donor Designation report CarD
Donate Life America Driving individuals, organizations and communities to increase the number of designated organ, eye and tissue donors who save and heal lives. Committed to building a culture of trusted donation expectation.
Introduction 1 Donor Designation BackgrounD In 2006, Donate Life America (DLA) launched the Donor Designation Collaborative to increase donor designation nationwide, thus helping to save the tens of thousands of men, women and children awaiting organ transplants and heal the hundreds of thousands more in need of corneal and tissue transplants. In the ensuing eight years, this process has evolved into our standard operating practice for advancing donor designation. In order to continue to improve the systems that enable recovery agencies to follow a donor s decision to give, DLA gathers, evaluates and compares state registry data. Annually, data from the donor registries of all 50 states, the District of Columbia and Puerto Rico are reported through this National Donor Designation Report Card. national impact on Donation One of the most important data points we track is the number of donor designations. A donor designation is a documented, legally authorized commitment by an individual to make an anatomical gift that can be revoked only by that individual. As a result of the donation and transplant community s continued commitment to save and heal lives through donation, 117 million individuals have registered as donors, 7.75 million of whom registered in 2013. Also in 2013, 43 percent of recovered organ donors, 49 percent of recovered tissue donors and 52 percent of recovered eye donors were authorized through state donor registries. These percentages have nearly doubled since the launch of the Donor Designation Collaborative, increasingly helping to facilitate the process of recovery agencies following a donor s decision to make an anatomical gift. 60% national impact on Donation, 2007-2013 Designated Donors Among Recovered Donors 50% 40% 30% 20% 19 % 25% 40 % 36 % 33 % 28 % 43 % 49 % 45 % 42 % 37 % 30 % 27 % 27 % 52 % 48 % 42 % 42 % 38 % 33 % 10% 0% Organ Tissue Eye 2007 2008 2009 2010 2011 2012 2013 2007 2008 2009 2010 2011 2012 2013 2008 2009 2010 2011 2012 2013 2007 eye data not available
Current National Status progress to Date Each year, Donate Life America collects data from the 52 state registries to determine the increase in donor designation nationally. The data are then compiled and analyzed to determine four important measures: Total donor designation, donor designation share, donor designation rate and whether effective registry design criteria have been met. This information is vital in identifying states that excel at programs to increase donor designation so that successful initiatives can be replicated. Donor Designation in the united states 117,108,378 as of 12/31/13 120,000,000 100,000,000 80,000,000 60,000,000 40,000,000 20,000,000 0 2008 2009 2010 2011 2012 2013 Donor Designation share in the united states 50 states, PR and DC as of 12/31/13 Donor Designation share Designated Donors 48% US Population Age 18+: 245,343,985 (From U.S. Census as of 7/12/13) The donor designation share (DDS) is the total number of designated donors as a percentage of all state residents age 18 and over. Some state registries allow minors to enroll, so these states may show higher percentages than those who only enroll residents 18 and over. The date of registry inception may also affect the number of people accounted for in a registry. Registries that have existed for many years have had a longer period of time to enlist donors versus more recently launched registries. Our goal is to have each state reach a minimum of 50 percent DDS. Donor Designation rate 2 The donor designation rate (DDR) is the rate at which individuals join or remain in the state donor registry as a percentage of all driver s licenses and ID cards issued within a specific period of time. Our goal is for each state to achieve a minimum 50 percent DDR. For example, if 1,000 people receive either a new or renewed driver s license or state ID, at least 500 register to be donors. Some states are unable to report the data necessary to calculate DDR. Fortunately, each year more and more states have been able to overcome that barrier by changing elements of their registry reporting. Many states still struggle to meet or surpass the 50 percent goal. We must continue to share information and spread best practices so that the national goal will be achieved. 50% 40% 30% 36.3% national Donor Designation rate 2008-2013 38.8% 38.4% 38.8% 42.0% 2008 2009 2010 2011 2012 44.0% 2013
Public Engagement 3 LiveOnAZ.Org engages those touched By Donation Effective storytelling is key to inspiring others to register as organ, eye and tissue donors. Research tells us that one of the most powerful motivating factors to registering is hearing testimonials of people who have been touched by donation. LiveOnAZ.org allows Arizonans to easily share and read stories that show the power of donation. LiveOnAZ.org is an interactive community-building tool that provides a platform for voices to be heard and for relationships to be cultivated. By engaging with those affected by donation and transplantation, we can empower them to share their story and help spread the word. Launched in 2013, the website features a virtual platform for donor families, transplant recipients, living donors, those awaiting transplants and registered donors to come together to share their stories and support for donation. This Wall of Life features the names of people who have posted their connection to donation and transplantation. When users browse through the names on the Wall, a call-out box appears showing how each person has been touched. By clicking on a photo, users are brought to a personal story page dedicated to that individual. Below the story, there is a direct call to action to register, allowing users to register as a donor in honor of that person. Anyone can add their story on the Wall at anytime. marisa enjoys active lifestyle again thanks to her tissue Donor When Marisa Garcia was 25 years old and training at a law enforcement pre-academy, a severe fall during an agility run left her with a torn anterior cruciate ligament (ACL). Marisa had always considered herself athletic, but now she was unable to walk properly and wondered what her future would hold. I wasn t able to do the simplest things: stand up straight, shower, drive or bend my knee, remembers Marisa. I needed constant assistance from my friends and family. Determined to restore her mobility, Marisa underwent an ACL reconstruction. She was surprised to learn that a tendon from a deceased donor would be used to rebuild her knee. During my rehabilitation, I wrote to my donor s family, said Marisa. His precious gift gave me my life back. Her donor, Timothy, was a tissue donor after being killed in an automobile accident at the age of 19. Today, Marisa is once again active and athletic. Anything that involves being outdoors or engaging in adventurous activities hiking, ziplining, swimming with dolphins or jumping off cliffs in Hawaii I am there! she affirmed. What a difference my donor made to me! (Story courtesy of OneLegacy)
2013 State Comparisons If the 50 percent minimum Donor Designation Share or Donor Designation Rate has been met or e minimum criteria in all areas are met, the entire state row is highlighted. Some states are unable to Total *State Donor Donor DLs & IDs **Donor Registry State Donor Population Designation Designations Issued Designation Inception Designations 18+ Share in 2013 in 2013 Rate in 2013 Year Alabama 2,274,605 3,722,241 61% 1997 Alaska 455,241 547,000 83% 89,645 108,658 83% 2004 Arizona 2,260,189 5,009,810 45% 2003 Arkansas 1,329,776 2,249,507 59% 1997 California 10,771,529 29,157,644 37% 1,945,143 6,958,145 28% 2005 Colorado 3,000,000 4,030,435 74% 874,856 1,300,534 67% 2001 Connecticut 1,169,601 2,810,514 42% 575,558 1,355,547 43% 2005 Delaware 382,291 722,191 53% 1998 Dist. of Columbia 254,938 534,975 48% 37,505 95,743 39% 2006 Florida 7,479,048 15,526,186 48% 1,666,805 3,703,024 45% 1995 Georgia 4,685,952 7,502,458 62% 1996 Hawaii 585,216 1,096,788 53% 78,284 184,788 42 1987 Idaho 744,413 1,184,355 63% 269,892 478,991 56% 2003 Illinois 5,446,882 9,858,828 55% 475,648 1,891,504 25% 1992 Indiana 3,508,321 4,984,875 70% 2001 Iowa 1,700,000 2,366,384 72% 2002 Kansas 1,043,421 2,169,865 48% 320,534 589,899 54% 2002 Kentucky 1,410,107 3,381,291 42% 416,994 1,049,644 40% 2006 Louisiana 2,204,103 3,512,513 63% 750,465 1,309,397 57% 1997 Maine 618,035 1,067,026 58% 134,642 260,549 52% 2007 Maryland 2,493,079 4,584,292 54% 826,977 1,788,943 46% 1991 Massachusetts 2,791,579 5,298,878 53% 515,900 1,125,177 46% 2006 Michigan 3,437,926 7,650,421 45% 852,808 1,905,926 45% 1994 Minnesota 2,612,629 4,141,269 63% 1,034,384 1,627,636 64% 2003 Mississippi 640,600 2,253,775 28% 2008 Missouri 3208,334 4,646,486 69% 640,971 1,426,570 45% 1996 Montana 665,677 791,184 84% 127,471 193,195 66% 2004 4
5 xceeded or effective registry design criteria have been met, these cells are highlighted in green. When report Total Donor Designation Rate. These states will have some blank cells. Total *State Donor Donor DLs & IDs **Donor Registry State Donor Population Designation Designations Issued Designation Inception Designations 18+ Share in 2013 in 2013 Rate in 2013 Year Nebraska 701,293 1,404,168 49% 257,589 570,128 45% 2003 Nevada 852,421 2,128,531 39% 369,742 896,070 41% 2001 New Hampshire 549,754 1,052,337 52% 103,167 193,900 53% 2009 New Jersey 2,443,276 6,877,222 34% 596,578 1,743,563 35% 1998 New Mexico 1,070,000 1,577,747 68% 296,751 531,794 56% 1980 s New York 3,383,116 15,411,151 22% 2000 North Carolina 4,473,241 7,562,455 59% 841,802 1,622,747 52% 2007 North Dakota 372,685 560,705 66% 2003 Ohio 5,321,617 8,920,978 60% 1,925,110 3,330,375 58% 2002 Oklahoma 1,836,686 2,903,541 63% 2004 Oregon 2,243,844 3,072,459 73% 508,302 919,530 55% 2007 Pennsylvania 4,523,375 10,058,156 45% 1,273,106 2,751,302 46% 1994 Puerto Rico 478,596 2,801,018 17% 2011 Rhode Island 431,995 837,524 52% 113,094 246,801 46% 2005 South Carolina 1,318,082 3,695,041 36% 207,172 973,495 21% 2009 South Dakota 353,171 636,918 55% 19,391 35,154 55% 2003 Tennesee 1,891,036 5,004,401 38% 654,831 1,894,868 35% 2008 Texas 4,700,000 19,406,207 24% 1,616,841 5,114,052 32% 2006 Utah 1,439,505 2,004,283 72% 412,518 717,103 58% 2002 Vermont 91,111 503,929 18% 2009 Virginia 3,719,416 6,395,870 58% 2003 Washington 4,303,284 5,375,611 80% 1,036,181 1,722,243 60% 2004 West Virginia 531,325 1,472,626 36% 1991 Wisconsin 2,591,057 4,434,937 58% 677,624 1,140,409 59% 2010 Wyoming 315,000 444,979 71% 91,872 154,798 59% 2003 Total 117,108,378 245,343,985 48% 22,636,153 59,912,202 44% *Population data from U.S. Census as of 7/12/13 **DDR only shown if reported all four quarters Estimated total
Overcoming Barriers ShOw YOur heart campaign addresses perceived age and illness Barriers Research shows that many people over 50 years of age believe they are too old or too unhealthy to qualify as a donor and, in some instances, are removing themselves from their state registry due to this misperception. In reality, almost two-thirds of all donations come from people above the age of 50, and the oldest person to donate was 93 years of age when he died. Myths and barriers can be difficult to break; but with more than 80,000 patients over the age of 50 waiting for a transplant, it is important to show that everyone has the potential to save and heal lives through donation. Donor Alliance s Show Your Heart campaign, launched in Colorado during National Donate Life Month in 2013, confronted these barriers with messaging that encouraged people to register regardless of their age or medical condition. The Show Your Heart campaign used radio ads, interviews, print ads, transit ads, local events and digital media, such as infographics, to promote donation to people who may be erroneously ruling themselves out as potential donors. As a result of the campaign, 5,000 additional Colorado residents registered as donors in just the two months following the campaign, a significant increase in a state where two-thirds of the population is already on the donor registry. DouBle-lung transplant recipient Becomes Donor at age 77 Ron Battiata suffered from crystallized lungs following years of working in a dental appliance production plant. After 14 months on the transplant waiting list, Ron received a double-lung transplant in 2000. Inspired by receiving the gift of life, Ron became an active volunteer for Gift of Life Michigan and committed to registering more donors and offering hope to those waiting. Having never met the family of his donor, Ron met another donor family from Michigan at the 2004 U.S. Transplant Games. Since the donor family he met had never been able to get in contact with their daughter s recipients, Ron adopted them for the next decade and the two families became as one. Thanks to his transplant, Ron and his wife Nancy were able to celebrate their 56th wedding anniversary. Earlier this year, Ron passed away at the age of 77; but in the midst of his family s grief for the loss of such a wonderful father and husband, they received comfort. As a registered donor, Ron himself gave hope to others by donating tissue and both of his kidneys. 6 (Story courtesy of Donor Network of Arizona)
Moving Forward 7 Engaging with registered donors and building trusted relationships with them are essential to further our goal of saving and healing lives. Our relationship with a registered donor should not end when he or she signs on the dotted line. Registered donor engagement means making a connection with that individual and establishing a trusted relationship with them. LiveOnAZ.org is one example of a platform that enables this kind of engagement and makes people feel good about their decision to register. Furthermore, it develops advocates who share their voices within their communities. Cultivating these relationships can serve as a way to tackle certain myths and barriers that can sometimes be deeply rooted. Through our research, we see people above the age of 50 concerned that they are not young or well enough to become a donor, and Ron s story proves this wrong. Programs like Donor Alliance s Show Your Heart campaign approaches these barriers head on, showing that anyone and everyone has the chance to save and heal lives. While the number of registered donors continues to increase, the number of patients awaiting lifesaving transplants continues to grow, as well. As long as people like Susie Dubin (shown below) remain on the waiting list, we must continue developing strategies and programs that reach out and inspire more people to register their decision to become lifesaving and healing organ, eye and tissue donors. As a transplant surgeon, I am dedicated to ensuring that my patients receive healthy organs so they can live their lives to the fullest. As mothers, fathers, sisters, brothers, uncles, nieces and grandparents, they aren t the only ones who are saved by donation; so are their families. It is up to us to register more donors, end this public health crisis and save the lives of those who await the gift of life. Andrew Cameron, MD, PhD, Director of Liver Transplantation, Johns Hopkins Hospital after near-fatal heart attack, susie DuBin awaits a new heart When Susie Dubin was 53 years old, she suffered a widowmaker heart attack. After several hours of surgery, her family was told that the results of such a heart attack are usually fatal, and they should call her relatives to say goodbye. However, against all odds, Susie s resilience saw her through and she survived. Despite her initial recovery, the damage to her heart had been too severe. In 2011, Susie was put on the transplant waiting list. Three years later, she continues to wait for an organ donor to give her the gift of life: a new heart. With three young grandchildren, Susie wants nothing more than to be a vibrant and energetic grandmother. She looks forward to the day when she is no longer held back by her illness. A new heart would allow her to fully participate in the lives of her grandchildren and be there for them as they grow. For now, however, she waits for the phone call that will change her life and that of her family thanks to the generous gift of a donor. (Story courtesy of Gift of Life Michigan)
Effective Registry Design Criteria From the beginning of the Donor Designation Collaborative, it was determined that a major factor to a registry s effectiveness was its design. Elements that have been identified as critical include: 1. One-step registration process for Department of Motor Vehicles (DMV) or online enrollment, allowing a registration to take effect without unnecessary delay. 2. State legislation authorizes recovery agencies to honor a donor s decision to make an anatomical gift with no further requirement for family authorization for organ, eye and tissue donation. Legislation makes a donor s decision the priority and prevents delays due to confusion or indecision that could result in the organs and tissue no longer being viable, and thus prevent the donation from taking place. 3. Organ, eye and tissue recovery agencies can effectively search donor designations 24/7. A system that limits the times at which a registry can be searched also may limit the number of donors. Making a registry searchable 24/7 ensures that designated donors are identified and allows donation professionals to honor the donor s documented decision. 4. Department of Motor Vehicles enrolls donors via driver s license and ID card applications and renewals by all available channels, including field office, online and mail, maximizing opportunities to designate a donation decision. 5. Individuals can enroll online through a dedicated website, providing potential donors the ability to register their decision at any time. Whether it is time to renew their license or not, a person can register their decision through this dedicated website. 6. Individuals can enroll by completing a paper form or registry brochure form. Multiple registration channels allow those without a license or ID card or access to the Internet to register. They also allow people to designate a donation decision at health fairs, conferences and community events. 7. Department of Motor Vehicles donor records are searchable within one week of enrollment. It is essential that registration information can be accessed soon after a person registers as a donor. Note: The names of licensing offices vary by state, such as the Department of Public Safety in Texas, the Bureau of Motor Vehicles in Indiana and the Department of Motor Vehicles in Virginia. 8 Healing stories like Marisa s are made possible though donor designation. A gift of tissue, such as a heart valve or a skin graft, can also be a lifesaving donation just like a heart or a kidney. Donor designation saves and changes lives. Frank Wilton, CEO, American Association of Tissue Banks, a Donate Life Partner
State Team Leaders state contact name email Alabama... Becky Davis...rebeccadavis@alabamaorgancenter.org Alaska... Janet Cornelius...janetc@lifealaska.org Arizona... Sara Pace Jones...sara@dnaz.org Arkansas... Audrey Brown...abrown@arora.org California... Cathy Olmo...colmo@ctdn.org Colorado... Danielle Percival...dpercival@donoralliance.org Connecticut... Caitlyn Bernabucci...cbernabucci@lifechoiceopo.org Delaware... Todd Franzen...tfranzen@donors1.org District of Columbia... Cindy Speas...cindy@wrtc.org Florida... Jennifer Krouse...jennifer.krouse@lifelinkfound.org Georgia... Tracy Ide...tracy.ide@lifelinkfound.org Hawaii... Nancy Downes...ndownes@legacyoflifehawaii.org Idaho... Alex McDonald...alex@idslife.org Illinois... Donald Greene II...don.greene@brcil.org Indiana... Andrea Bauschek...abauschek@donatelifeindiana.org Iowa... Anne Casey...acasey@iadn.org Kansas... Ray Gabel...rgabel@mwtn.org Kentucky... Shelley Snyder...Ssnyder@trustforlife.org Louisiana... Kirsten Heintz...kheintz@lopa.org Maine... John Macone...john_macone@neob.org Maryland... Libby Wolfe...lwolfe@donatelifemaryland.org Massachusetts... Matthew Boger...matt_boger@neob.org Michigan... Tim Makinen...tmakinen@giftoflifemichigan.org Minnesota... Rebecca Ousley...rousley@life-source.org Mississippi... Becky Pierson...bpierson@msora.org Missouri... Annie Kuhl...akuhl@saving-sight.org Montana... Jennifer Knight Davis...jennifer.davis@sightlife.org Nebraska... Lisa Carmichael...lmcarmichael@cox.net Nevada... Kate McCullough...kmccullough@nvdonor.org New Hampshire... Dave Teune...Dave_Teune@neob.org New Jersey... Elisse Glennon...eglennon@njsharingnetwork.org New Mexico... Maria Sanders...msanders@dcids.org New York... Aisha Tator...atator@alliancefordonation.org North Carolina... Sharon Hirsch...shirsch@donatelifenc.org North Dakota... Jeffery Richert...jrichert@life-source.org Ohio... Marilyn Pongonis...mpongonis@lifelineofohio.org Oklahoma... Katy Smith...ksmith@lifeshareok.org Oregon... Stephen Rice...ricst@ohsu.edu Pennsylvania... John Green...jgreen@donors1.org Puerto Rico... Maresa Boneta-Dueno...maresa.boneta@lifelinkfound.org Rhode Island... Matthew Boger...matt_boger@neob.org South Carolina... Tracy Armstrong...tarmstrong@donatelifesc.org South Dakota... Susan Mau Larson...smlarson@life-source.org Tennessee... Sharon Pakis...spakis@dcids.org Texas... Laura Frnka-Davis...lfrnka@lifegift.org Utah... Alex McDonald...alex@idslife.org Vermont... Matthew Boger...matt_boger@neob.org Virginia... Christina Jenkins...cjenkins@odef.org Washington... Mary Graff...mary.graff@lcnw.org West Virginia... Holly Mitchell...hmitchell@core.org Wisconsin... Martha Mallon...martha.mallon@wisconsin.gov Wyoming... Danielle Percival...dpercival@donoralliance.org
Donate Life America is a 501(c)3 not-for-profit alliance of national organizations and Donate Life State Teams across the United States dedicated to saving and healing lives through increased organ, eye and tissue donation. Donate Life America, with the help of its corporate partners, is committed to spreading the word about the importance of being a registered donor so that others may live. Our vision is a nation that embraces organ, eye and tissue donation as a fundamental human responsibility. Donate Life America manages and promotes the national brand for donation, Donate Life, and assists Donate Life State Teams and national partners in facilitating high-performing donor registries; developing and executing effective multimedia donation education programs; and motivating the American public to register now as organ, eye and tissue donors. DonateLife.net DoneVida.org facebook.com/donatelife