In our quest to solve the kidney donor shortage, Explore Transplant is honored to be part of a collaborative, National initiative to reduce the organ waiting list, improve outcomes for individuals waiting for organ transplants, and provide more support for living donors. We’re joining President Obama in tapping into the “ingenuity and kindness of the American people” and taking key actions to address the organ donor shortage.
On June 13, 2016, our founder Dr. Amy Waterman spoke about kidney transplant and living donation at a White House Summit highlighting issues in transplantation and organ donation. You can watch Amy discuss the importance of locating, educating and activating more living donors here. (transcript below)
Share This!
Transcript
37:19 my name is Dr. Amy Waterman and I'm a crier for this field
37:34 I love this field so if I cried this whole thing we're just going to have to
37:37 include it okay
37:38 I'm a health psychologist and the director of the transplant research and
37:43 education center at UCLA transplant is the best of humanity and the best of
37:49 health care
37:50 every day I witnessed the gratitude that kidney patients feel when they realize
37:55 that someone has offered to donate an organ to them so that they can live a
37:59 longer and better quality of life
38:02 I see their profound kindness and courage of living donors who are willing
38:07 to undergo surgery to help someone else
38:10 I see the skill of surgeons who can remove a kidney from one person or any
38:15 organ and put it into somebody else and get it working
38:19 i watch the expertise of a multidisciplinary team ensuring that
38:23 these transplants work for decades
38:26 it is an honor to work in this field in the u.s. right now there are six hundred
38:32 and sixty thousand patients who have kidney failure
38:34 I want to take you to a hard day in their lives
38:39 a day when the patients here for the first time that their kidneys are
38:44 failing
38:45 what are they going to do that sleepless night when they're alone with their
38:49 thoughts worrying what they should do next
38:52 other people are right there with them the patient's wife his daughter their
38:57 friends
38:58 how could they help could they may be be living donors
39:02 during these hard days and nights there is an incredible opportunity to learn to
39:08 get strategic to make the best most informed choices about how to live a
39:12 long time to decide whether to pursue getting on the transplant waiting list
39:17 or living donation for loved ones to learn with the patient and to see if
39:22 they would step forward to offer a donate a kidney to
39:26 research shows that patients and their family members and friends who receive
39:31 better transplant education and living donor education as early as possible are
39:36 more likely to become waitlisted and receive living donor kidney transplants
39:40 to receive transplants . because they start out smarter they take they can
39:45 take advantage of all of the new innovations that we're going to be
39:48 talking about today and I want everyone to have access to them
39:52 many people are going to talk about the organ donor shortage today I want to
39:56 talk about the shortage of consistent education outside of transplant centers
40:01 and consistent education about living donation for the family members and
40:05 friends as well
40:07 we have to meet this shortage — because the clock starts ticking when someone's
40:12 organs fail when someone's kidneys fail when their kidneys stop working many
40:16 patients have to start dialysis
40:18 while life-saving only forty percent of of patients on dialysis will be alive
40:23 after five years compared to seventy-five percent if they can get a
40:27 kidney from someone who has died or eighty-seven percent if they receive a
40:31 living donor kidney
40:33 we have to get people and their families learning quickly but there's a lot to
40:37 learn about deceased in living donation
40:40 many patients on dialysis never take the time to come to a transplant center to
40:44 learn more from the experts African-American and Hispanic patients
40:48 are less likely to come forward
40:50 patients who don't speak English are left likely patients who don't have a
40:54 car to drive to the transplant center
40:57 these patients are less likely to receive education at all to be referred
41:02 for or to receive transplants
41:04 this is not okay
41:06 family members and friends who might want to help or be living donors they
41:10 don't always live in the same city as the patient
41:12 they can't take off work to go to a medical appointment and patients are
41:16 private about their health condition they don't want to talk about this
41:19 always so we have a quiet conversation that needs to get loud
41:25 finally much of the information available on the Internet has not been
41:29 formally vetted by the transplant community
41:31 it can be confusing overwhelming and sometimes wrong
41:35 speaking on behalf of the blue ribbon advisory panel in which i represent
41:39 we believe that everybody should be able to make an informed decision about
41:42 transplant and living donation and that you shouldn't have to come to a
41:46 transplant center to learn
41:47 therefore leaders in the design of transplant education from beth israel
41:51 deaconess medical center
41:53 duke university school of medicine emory university johns hopkins university
41:57 Mount Sinai Hospital Northwestern University Temple University and the
42:02 University of California Los Angeles have created a blue ribbon advisory
42:07 panel committed to establishing a national online clearinghouse of
42:11 educational resources about transplant and living donation for patients living
42:16 donors and the interested public
42:18 the goal of this panel is doing ensure inform transplant and living donation
42:22 decision making and equity and access to quality information to combat barriers
42:28 that research suggests limits access to transplants resources will be made
42:32 publicly available by the end of summer of 2017
42:36 we may not yet have enough kidneys to go around organs to go around but we can
42:41 make sure that there's enough education to go around for all Americans
42:46 thank you