KIDNEYS IN COMMON PROGRAM OVERVIEW

Prepared by: Darin Johnson, 
Executive Director & Co- Founder, Kidneys in Common, Inc.
July, 2017

EXECUTIVE SUMMARY

Objective

To educate and mobilize civic, fraternal, corporate and faith-based communities in support of their members who may need a kidney transplant and those who would consider living kidney donation.

Goals

To reduce, and eventually eliminate, the waiting list for a kidney transplant.

Kidneys in Common and a Community Driven Solution to Kidney Disease

Kidneys in Common intends to address the need for living kidney transplants by working with national community leaderships to promote awareness and solutions among their memberships. The majority of Americans are represented in their connections to these national organizations — or communities. By establishing awareness programs with leaders at the national level, Kidneys in Common can potentially reach millions of Americans who might consider becoming a donor, and tens of thousands of ESRD patients who are not aware of the options available to them.

By relying upon the expressed desire of national organizations to help members of their personal community, Kidneys in Common can facilitate the dissemination of clear information and direction — allowing would-be kidney donors the opportunity to safely consider donating their extra kidney, and recognize their personal ability to save lives and families from the devastating impact of kidney disease. Even a small percentage increase in the number of living kidney donors can fundamentally alter the fight against kidney disease in this country. New approaches are needed and the community based model represents a new and potentially powerful effort.

Kidneys in Common will not directly engage in any campaigning for kidney donors/donation, nor will it have formal financial ties to organizations which profit from kidney transplant. By removing itself from these roles, Kidneys in Common can provide sorely needed information and honest considerations, while buffering itself and would-be kidney donors from potentially coercive or profit-driven environments.

Helping communities help themselves is step one. When information disseminated through communities results in individuals recognizing a situation which they might positively impact through kidney donation, the second step for Kidneys in Common is to assist them in understanding their options and opportunities according to their own priorities, concerns, timetable and resources.

There is a groundswell of support for elevating the discussion on how best to establish and normalize wider consideration of living kidney donation. Facilitating such a discussion must involve the communities in which people participate and live and which represent the rich diversity within our society. 

 varied community perspectives of faith based, fraternal, civic, academic and corporate organizations that recognize and understand their roles in the solution. Kidneys In Common recognizes the necessity of operating from a position of ethical clarity and transparency. With transparency as a core value in the discussion of living kidney donation and community directed donation, Kidneys in Common will encourage continual examination of existing ethics involved. This discussion will strengthen the Kidneys In Common methods as it introduces a new phase in the fight against end stage renal failure.

Lead funding will be sought from vested individuals who recognize the importance of the KiC mission. Small private and family foundation grant funds will be proposed while the organization positions itself for approaches to larger private and corporate foundations. Emphasis will be placed on the cultivation of a national community of support through traditional mail communications, social and traditional media and strategic personal outreach through board, advisory and staff relationship opportunities. Particular opportunities exist with the primary stake holders involved in the fight against ESRD. This includes but is not limited to pharmaceutical companies, healthcare insurers, and retail pharmacy chains.

The Kidney Failure Epidemic

Kidney Disease is the ninth leading cause of death in the United States.

More than 600,000 Americans suffer from End Stage Renal Disease (ESRD).

The primary medical response to this is Dialysis, which, while can offer a modest extension of life, does not offer quality of life.

Transplantation is medically acknowledged to be the preferred treatment, offering longer lifespans, fewer complications and a higher quality of life, at much lower expense.

Currently, there are not enough kidneys available for transplant, and the multi-faceted debate on the ethics of living kidney transplant has become a barrier to realistic and appropriate solutions: solutions that are very possible and of which tens of thousands of needy people are never made aware.

Deceased kidney donation efforts have been successful, but have failed to keep pace with the rate of increase in cases of kidney disease.

Over 100,000 people are added to the National Kidney Transplant Waiting list each year.

African Americans, Hispanics, and Native Americans are all disproportionately more likely to need a transplant but less likely to be referred to a transplant center. In fact, tens of thousands of patients medically suitable for transplants never make it to the waiting list.13 The most recent data show that once on the list, African Americans wait 40 percent longer to receive a kidney than whites do, and Hispanic candidates wait 50 percent longer.

Kidneys in Common is working with the national leaders of civic, fraternal, corporate and faith-based communities with which tens of millions of Americans identify, helping them support their members who may need a kidney transplant and those who would consider living kidney donation. Then, Kidneys in Common will provide clear and unbiased information for those members on how best to navigate the kidney health medical landscape to help one another.

What is A Community Based Solution to Kidney Disease?

What is A Community Based Solution to Kidney Disease?

Millions of Americans are represented through the communities in which they live, work, play and pray.  Civic, fraternal, corporate, veteran, and congregational organizations can be empowered to make information available, make recommendations, and assist their members in ways that others cannot.  Kidneys In Common will work closely with leaders of these communities to help identify need, identify help, and then assist in the response.

Kidneys in Common will work with individual national communities and their leadership to advance a common understanding of what is possible when Living Kidney Donationis combined with Paired Kidney Exchange. The intent is to offer an unprecedented approach to reducing, and eventually eliminating, the wait for a kidney transplant in this country: and in doing so, also reduce reliance on dialysis as the primary response to kidney disease.  

For someone confronting End Stage Renal Disease (ESRD), today, it can be a challenge to find the best options available to them.  Too often, the options provided also happen to be in the best interests of transplant centers, donor registries or dialysis providers.  It is natural that people will look to their communities and social structures for support and help. As the Kidneys in Common network develops, we will make sure that the help and support they are looking to their communities for, is there.  Transparent, unbiased information is difficult to come-by for ESRD patients. That is true for would-be kidney donors as well.  Kidneys in Common intends to embrace and address this issue by becoming an independent educational resource, offering options for would-be altruistic non-directed donors.  Our information will be thorough and transparent as to the benefits and risks involved in living kidney donation, and provide step-by-step considerations for their decision making process.  As an organization with no direct financial ties to the transplant community Kidneys in Common will be able to monitor the transplant landscape and make sure that the interests and concerns of the donor are prioritized. Regardless of how a donor wants to be recognized, they deserve to be treated as heroes and not commodities.

In this context, “community based” means that information regarding the need for living donors will be disseminated through religious, fraternal, corporate, veteran, and other organizations.  These national organizations are best suited to determine whether this information will be offered personally, such as,

“…a member of our congregation needs a kidney” 

or strictly informational, such as, 

1 in 3 Americans is at-risk for kidney disease. There is a critical need for living kidney donors.  5,000 American are dying annually because a suitable donor could not be identified. and an additional 250,000 Americans find themselves held hostage to a dialysis treatments with no quality of life beyond hoping and waiting.

Building a transplant program that can better serve ESRD patients — especially in underserved or minority communities — is about people first: their relationships and communities.  Kidneys in Common will operate according to the idea that, ultimately, the best way to help ESRD patients is to normalize a transparent and safe path for more living kidneys to be donated.  By helping to open trusted lines of communication within peoples’ own communities about the needs for a kidney and the availability of kidneys, Kidneys in Common intends to help create those paths. We will do so in ways that honor the individuals and avoid the tendency to monetize organs.  Patients will benefit from an independent voice and resource, as will would-be donors.

While, in part, Kidneys in Common will be working indirectly on behalf of ESRD patients by helping to improve the processes for living kidney donors, we realize that many of the people who will contact us will be anxious and distressed.  Each inquiry will receive immediate acknowledgment and a timely personal response. Whether the ESRD patients who contact Kidneys in Common have incompatible donors or no donors at all, we will provide the necessary information to help them better understand and navigate the priorities of transplant centers, registries and other programs, some of which may have competing economic interests. 

Article: New York Times on American Kidney Fund, 12.25.2016, https://www.nytimes.com/2016/12/25/business/kidney-fund-seen-insisting-on-donations-contrary-to-government-deal.html

A Community Based Solution to Kidney Disease means that we empower communities of all kinds to help their own members by connecting resources to the need. Beyond that, it means that there exists an independent source of guidance and support.  In addition to building lasting relationships with a long list of communities, Kidneys in Common will develop the capacity to support kidney donors through the process and provide for benefits such as lost wage reimbursement, travel, life and healthcare insurance associated with the donation, and protection from out-of-pocket medical expenses.  Kidneys in Common is a new and emerging organization which has developed a manageable and efficient plan for growth.  Success will be measured in simple terms: substantive engagement with civic, fraternal, corporate, veteran, and congregational organizations which results in more altruistic transplant support for ESRD patients who need it.

An Open Letter to President Barack Obama, Secretary of Health and Human Services Sylvia Mathews Burwell, Attorney General Eric Holder and Leaders of Congress

HOW TO END THE WAIT FOR ORGAN TRANSPLANTS

The U.S. policy on organ transplants is failing to meet the needs of both patients and donors. Its goal is to save the lives of those with organ failure and to protect the rights and health of those giving organs. But it is not working for those with kidney failure (End-Stage Renal Disease, or ESRD) and they are a significant majority of those waiting for organ transplants.

The government-sponsored waiting list for kidney transplant has grown to more than 100,000 names. Each year, 7,000 people on that list either die or become too ill to receive a transplant. And the problem is only getting worse: while 35,000 patients are added to the waitlist annually, only 17,000 transplants are performed.

We support current efforts to prevent diabetes and hypertension and to make the donation process fairer and more efficient, but they will not resolve the shortage. Additional approaches must be tried. Sadly, transplant policy has been governed by an unsubstantiated assumption: that donors cannot receive benefits for donating without being exploited or coerced. It is critical to examine that assumption. We hereby call for the swift initiation of evidence-based research on ways to offer benefits to organ donors in order to expand the availability of transplants.

THE PATH FORWARD

Increasing the number of transplants will save lives – our primary goal. This is a rare area of health care where better care will actually help reduce spiraling health care costs. Each transplant saves the health care system more than $100,000 compared to the cost of dialysis. Medicare guarantees dialysis and transplant coverage for all patients with kidney failure regardless of age – fully percent of Medicare’s budget. On average, for each year a patient has a working transplant instead of dialysis, Medicare saves $55,000.

All pilot studies should of course adhere to the high ethical standards currently in place for non-compensated donors. These include guaranteeing informed consent, medical appropriateness of the donation, psychological suitability, and absence of coercion. Pilot programs would include appropriate waiting periods to give potential donors time for reflection.

To ensure equality, private transactions between individuals should remain prohibited. Transplants and benefits should be distributed by a government or government-authorized nonprofit such as the United Network for Organ Sharing (UNOS). While cash incentives are not necessarily unethical, a cautious approach would model benefits on those provided by the GI Bill, such as fully comprehensive life-long health care coverage, disability and life insurance for living donors and funeral benefits for deceased donors. Living donors should be assured priority access to a transplant if needed. Additional benefits such as a pension contribution, tax credit, or charitable contribution in the donors’ names should also be explored, particularly when those benefits will appeal to donors across the financial spectrum. Giving an organ need not fall disproportionately on people with lower incomes.

THE KIDNEY FAILURE EPIDEMIC

We write with a sense of urgency as the human cost of kidney failure is so high. More than 600,000 patients suffer from ESRD, a condition that left untreated results quickly in death. Dialysis is the treatment used by more than two-thirds of these patients,7 and while it achieves a modest extension of life (on average eight additional years for patients 45 to 49), it can be debilitating and complications regularly ensue.

Transplantation is medically acknowledged as the preferable treatment.9 Transplants provide a longer life span, lower rates of complication, and better quality of life than dialysis. But not enough organ donors are available. And as is too often the case, indigent and minority patients are more poorly served.

African Americans, Hispanics, and Native Americans are all disproportionately more likely to need a transplant but less likely to be referred to a transplant center. In fact, tens of thousands of patients medically suitable for transplants never make it to the waiting list. The most recent data show that once on the list, African Americans wait 40 percent longer to receive a kidney than whites do, and Hispanic candidates wait 50 percent longer.

The shortage drives organ trafficking, where mostly poor and uninformed people in the global south are recruited to sell their organs, often to patients in the global north. Such transplants are often performed under coercive, exploitative, and unsafe conditions. The World Health Organization has estimated that about 10 percent of all organ transplants worldwide each year are the result of trafficking.

CURRENT EFFORTS ARE INADEQUATE

Five years ago, the National Kidney Foundation launched “End the Wait,” a ten-year campaign promising that by 2019, no one with end stage renal disease who was eligible for a transplant would wait more than one year before receiving one.

We are at the halfway mark of this campaign. It was initiated with the best of intentions, but no progress has been made. In 2009, the average wait time for a kidney was 2.8 years; today it’s 4.3. More than 77,000 people were on the waiting list then; today more than 100,000 are. Last year, there were 11,200 transplants from deceased donors; five years before, it was 10,600. Last year, we saw 5,700 transplants from living donors, compared to 6,000 five years previously. More patients are dying, fewer are receiving transplants, and more and more people need kidneys.

CONCLUSION

We applaud the President’s declaration that 2014 is a “year of action” when he will use executive powers and the regulatory process to ensure the health and well-being of Americans and end unnecessary health expenditures. As part of this process, we call on the President to take executive action on organ transplantation and initiate pilot studies on benefits to donors.

We call on HHS to develop the necessary regulatory process for conducting such studies and to implement them.

We call on the Attorney General to smooth the way for such pilot programs by recognizing that they are consistent with the intent of the National Organ Transplant Act.

Finally, we call on Congress to pass legislation that allocates the necessary funding for these programs and clears the way for their implementation.

Kidney disease has for too long been neglected by all branches of government. It is time to act.

Initiating signers*
Nir Eyal, Associate Professor of Global Health and Social Medicine, Harvard Medical School and Harvard University
Julio Frenk, Dean, Harvard School of Public Health, Harvard University
Michele B. Goodwin, Chancellor’s Chair in Law, University of California-Irvine Law School
Lori Gruen, Professor of Philosophy, Feminist, Gender, and Sexuality Studies, and Environmental Studies at Wesleyan University
The Very Reverend Gary R. Hall, Dean, Washington Cathedral
Douglas W. Hanto, Professor of Surgery and Associate Director Vanderbilt Transplant Center, Vanderbuilt University, Tennessee
Frances Kissling, President, The Center for Health, Ethics and Social Policy
Ruth Macklin, Professor of Bioethics, Albert Einstein College of Medicine
Steven Pinker, Johnstone Family Professor, Department of Psychology, Harvard University
Lloyd E. Ratner, Professor of Surgery, Columbia University
Harold T. Shapiro, President Emeritus, Princeton University
Peter Singer, Ira W. DeCamp Professor of Bioethics, Princeton University
Andrew W. Torrance, Professor of Law, University of Kansas and Visiting Scholar MIT Sloan School of Management
Robert D. Truog, Director, Center for Bioethics, Harvard University, Harvard Medical School
Robert M. Veatch, Professor of Medical Ethics at the Kennedy Institute of Ethics, Georgetown University

 

FULL LIST OF SIGNERS

Health Professionals

Dorothy Arthur, Social Worker, Troy, NY
Pamela Barnes, President and CEO, EngenderHealth
Kelly Blanchard, President, Ibis Reproductive Health
Safiye Cagar, Retired UN Official
Virginia Campbell, MD, Fellow in Palliative Medicine, University of Alabama at Birmingham School of Medicine Paulo Costa, Former President and CEO, Novartis US
Suzanne Davenport, Community Health Worker Advocate, University of Illinois at Chicago
David Davis, Senior Director, Association of American Medical Colleges
Charles H. Debrovner, MD, President, Global Bioethics Initiative
Amanda Dennis, Ibis Reproductive Health
Elizabeth Fleming, Medical Student, Ohio State University
Howard Forman, MD, Professor, Diagnostic Radiology and Public Health, Yale School of Public Health
Joel E. Frader, MD, Division Head, Academic General Pediatrics and Primary Care, Ann & Robert H. Lurie Children’s Hospital of Chicago; Director, Bridges Pediatric Palliative Care Team; Todd Davis Professor of Academic General Pediatrics/Professor of Medical Humanities and Bioethics, Northwestern University Feinberg School of Medicine
Beth Fredrick, Senior Associate at Faculty Johns Hopkins Bloomberg School of Public Health
Julio Frenk, MD, PhD, Dean, Harvard School of Public Health, Harvard University
Deborah Fried, MD, Assistant Clinical Professor of Psychiatry, Yale University
Brandon A. Gaudiano, PhD, Assistant Professor (Research) of Psychiatry & Human Behavior, Alpert Medical School of Brown University
Scott Gottlieb, MD, Resident Scholar, American Enterprise Institute; Former FDA Deputy Commissioner
Richard Griffin, PhD, Department of Psychology, Tufts University
Jeet Guram, MD/MBA Student, Harvard Medical School and Harvard Business School
Harville Hendrix, PhD, H&H Ventures, Co-Creator of Imago Relationship Therapy
Karl Hofmann, President and CEO, PSI
Keith Humphreys, PhD, Professor of Psychiatry and the Behavioral Sciences, Stanford University
Hortense Hunter Moore, Center for Health and Gender Equity (CHANGE)
Geraldine Jender, Social Worker, Naperville, IL
Joaquín M. Jiménez, Professor, University of Puerto Rico
Kermit Jones, MD, JD, Primary Care Physician, General Internal Medicine Group, Arlington, VA
Frances Kissling, President, Center for Health, Ethics and Social Policy
Monica Knorr, Geriatric Social Worker, Manchester, VT
Keren Ladin, PhD, Assistant Professor, Department of Occupational Therapy, Tufts University; Department of Public Health and Community Medicine, Tufts University School of Medicine; Director, Research on Ethics, Aging, and Community Health (REACH)
Ezra Lyon, Medical Student, Ohio State University
Kirk M. Maxey, MD, President & CEO, Cayman Chemical
Barbara Mellers, PhD, George Heyman University Professor, Professor of Psychology, University of Pennsylvania
Howard Palefsky, Managing Director, Montreux Equity Partners
Vicki Palefsky, Atlanta, GA
Hal Pashler, PhD, Distinguished Professor of Psychology, University of California, San Diego
Martha Pavlakis, MD, Associate Professor, Harvard Medical School, Massachusetts General Hospital
Barb Peters, BSN, RNC-NIC, Fort Collins, CO
Malcolm Potts, MB, BChir, PhD, Professor of Maternal and Child Health, University of California, Berkeley
Caitlin Quade, PSI, Washington, DC
Kimeera Rao, Clinical Dietitian, Howard University Hospital
Amy Rogers, MD, PhD, ScienceThrillers Media
Mark D. Rego, MD, Yale University Department of Psychiatry
Richard Sackler, MD, Austin, TX
Robert M. Sade, MD, Distinguished University Professor, Professor of Surgery, Director, Institute of Human Values in Health Care, University of South Carolina
Sally Satel, MD, Resident Scholar, American Enterprise Institute
June Schwarz, RN, VNA Arlington, MA
Robert Southworth Searle, President, Searle & Co Inc., Greenwich, CT
Sara Seims, Senior Advisor, Population & Reproductive Health, David and Lucile Packard Foundation
Martin Seligman, PhD, Zellerbach Family Professor of Psychology, University of Pennsylvania
Bonnie L. Shepard, Program Evaluator, Wellfleet, MA
Steven Sinding, PhD, Former Director General, IPPF, Former Director Global Population, USAID
Serra Sippel, President, Center for Health and Gender Equity (CHANGE)
Thomas Peter Stossel, MD, American Cancer Society Professor of Medicine, Harvard Medical School
Charlotte Taft, Imagine
E. Fuller Torrey, MD, Associate Director, Stanley Medical Research Institute
Grace-Marie Turner, Galen Institute, Arlington VA
Peter T. Wilderotter, President and Chief Executive Officer for the Christopher & Dana Reeve Foundation, New Jersey
Beverly Winikoff, MD, President, Gynuity Health Projects 

Transplant Professionals

Michael M. Abecassis, MD, J. Roscoe Miller Distinguished Professor Departments of Surgery and Microbiology-Immunology, Northwestern University Feinberg School, of Medicine
Richard Amerling, MD, Attending Nephrologist, Mount Sinai Beth Israel, and Associate Clinical Professor of Medicine, Icann Mount Sinai School of Medicine
Prabhakar Baliga, MD, Professor of Surgery, Chief, Division of Transplant, MUSC, Charleston, SC
Roy Bloom, MD, Professor of Medicine, University of Pennsylvania
Bill Brazell, Partner, WIT Strategy
William Chapman, MD, Professor and Chief, Section of Transplantation, Chief, Division of General Surgery, Washington University, St. Louis
Kenneth D. Chavin, MD, PhD, Professor of Surgery, Microbiology and Immunology, Vice Chairman of Research Department of Surgery, Transplant Surgery, Medical University of South
Jeffrey S. Crippin, MD, Marilyn Bornefeld Chair in Gastrointestinal Research and Treatment; Medical Director, Liver Transplantation; Washington University School of Medicine & Barnes-Jewish Hospital, St. Louis, MO
David C. Cronin, MD, PhD, Professor of Surgery, Division of Transplantation, Medical College of Wisconsin
Anthony M. D'Alessandro, MD, Professor of Surgery, University of Wisconsin School of Medicine and Public Health
Francis DiBona, MD, Retired, CSRA Renal Services, Inc, Aiken, South Carolina
Devin Eckhoff, MD, Professor of Surgery, Director, Division of Transplantation, Director, Liver Transplant Program, Medical Director, Alabama Organ Center, The University of Alabama at Birmingham
Jonathan Fisher, MD, Surgeon, Scripps Clinic Medical Group
Robert A. Fisher, MD, Professor and Chief Transplant Surgery Division, Harvard Medical School, Director Transplant Institute, Beth Israel Deaconess Medical Ctr
Sander S. Florman, MD, The Charles Miller, MD Professor of Surgery, Director, Recanati/Miller Transplantation Institute, Mount Sinai Medical Center
Chris E. Freise, MD, Professor of Surgery, Transplant Division, University of California, San Francisco
Amy L. Friedman, MD, New York
Eli A. Friedman, MD, Distinguished Teaching Professor of Medicine, SUNY, Downstate Medical Center
Robert Gaston, MD, Robert G. Luke Endowed Chair in Transplant Nephrology, University of Alabama at Birmingham
Bruce Gelb, Director of Renal Transplantation, New York University
Michael Goldstein, MD, Executive Director, Life Alliance Organ Recovery Agency; Director of Kidney Transplantation at Miami Transplant Institute
Robert A. Gutman, MD, Retired Professor of Medicine (Nephrology), Duke University
Douglas W. Hanto, MD, PhD, Professor of Surgery, Vanderbilt University School of Medicine
Mitchell L. Henry, MD, Professor of Surgery, Chief, Division of Transplantation, the Ohio State University Wexner Medical Center
Benjamin Hippen, MD, Transplant Nephrologist, Carolinas Medical Center, Charlotte, NC; Clinical Associate Professor of Medicine, UNC Chapel Hill
Michael Brian Ishitani, MD, Professor of Surgery, Mayo Clinic, Rochester, MN
Devon John, MD, Chief of Transplantation Surgery, SUNY Downstate Medical Center
Sandip Kapur, MD, Professor of Surgery, Chief, Division of Transplant Surgery, NY Presbyterian Hospital, Weill Cornell Transplant Center
Seth J. Karp, MD, Professor of Surgery, Ingram Chair in Surgical Sciences, and Director, Vanderbilt Transplant Center
Harold Kyriazi, PhD, Department of Neurobiology, University of Pittsburgh School of Medicine
Ted Lawson, Co-Chair, Public Policy Committee - TRIO, Inc
Peter N. Madras, MD, Senior Staff, Institute of Urology, Lahey Health
Joren C. Madsen, MD, DPhil, Professor of Surgery, Harvard Medical School, Director, MGH Transplant Center, W. Gerald and Patricia R. Austen Distinguished Scholar in Cardiac Surgery, Massachusetts General Hospital
John C. Magee, MD, Professor of Surgery, University of Michigan
Arthur Matas, MD, Professor of Surgery and Director of Kidney Transplantation, University of Minnesota
Lisa Tabor McCrea, Patient Advocate, Matching Donors, Pollock, LA
J. Michael Millis, MD, Professor of Surgery, Director, University of Chicago Transplant Center; Chief, Section of Transplantation, Liver Transplantation and Hepatobiliary Surgery, University of Chicago
Ernesto Molmenti, MD, Vice Chairman, Department of Surgery; Director, Transplant Program; Professor, Departments of Surgery and Medicine, Hofstra North Shore-LIJ School of Medicine
Anthony P. Monaco, MD, Peter Medawar Professor of Surgery, Harvard Medical School; Beth Israel Deaconess Medical Center
Paul Morrissey, MD, Associate Professor of Surgery, Brown Medical School
James Myers, National Kidney Foundation
Harvey Mysel, Founder, Living Kidney Donors Network, IL
Douglas Penrod, RN, Transplant Nurse Coordinator, Non-Directed Living Kidney Donor, Chicago, IL
Thomas G. Peters, MD, Professor of Surgery Emeritus, University of Florida
Jim Plante, President and CEO, Pathway Genomics Corporation
Lloyd E. Ratner, MD, MPH, Professor of Surgery, Columbia University
Peter Reese, MD, Assistant Professor of Medicine and Epidemiology, Perelman School of Medicine at the University of Pennsylvania
Jorge Reyes, MD, Chief of Transplant Surgery, University of Washington
Reza Saidi, MD, Alpert Medical School, Brown University
David Shaffer, MD, Professor of Surgery, Vanderbilt University School of Medicine
Sudhir V. Shah, MD, Professor of Medicine and Director, Division of Nephrology, UAMS College of Medicine, Little Rock, AR
Michael E. Shapiro, MD, Associate Professor of Surgery, Rutgers - New Jersey Medical School
Risa Simon, Founder and Executive Director, and Patient Educator, The Proactive Path & TransplantFirst Academy
Barry H. Smith, MD, PhD, President/CEO, The Rogosin Institute; Professor of Clinical Surgery, Attending Physician, NewYork Presbyterian-Weill Cornell Medical Center
Hans W. Sollinger, MD, PhD, Folkert O. Belzer Professor, Departments of Surgery and Pathology, University of Wisconsin Madison, Founder Insulete
Lew Teperman, MD, Associate Professor; Service Chief at NYUHC; Div Chief Transplant Surgery; Vice Chair Department of Surgery
JE Tuttle Newhall, MD, Professor of Surgery Anesthesia and Critical Care; Division Chief Transplant Surgery at St. Louis University Hospital/Cardinal Glennon Medical Center
David J. Undis, Executive Director, LifeSharers
James F. Whiting, MD, Surgical Director, Maine Transplant Program, Maine Medical Center, Portland, ME
Joel M. Zinberg, MD, JD, Associate Clinical Professor of Surgery, Mount Sinai Hospital 

Ethicists/Philosophers

Jacob M. Appel, MD, JD, Department of Psychiatry, The Mount Sinai School of Medicine
Neera Badhwar, PhD, Professor Emeritus, Department of Philosophy, George Mason University
Dan W. Brock, PhD, Frances Glessner Lee Professor of Medical Ethics, Emeritus, Department of Global Health and Social Medicine, Harvard Medical School
Inmaculada de Melo-Martin, PhD, Professor of Medical Ethics, Weill Cornell Medical College
Adam Elga, PhD, Professor, Princeton University
Nir Eyal, DPhil, Associate Professor of Global Health and Social Medicine, Harvard Medical School, Harvard University
Johann Frick, Instructor, Department of Philosophy and Center for Human Values, Princeton University
Sigrid Fry-Revere, JD, Founder and CEO, Stop Organ Trafficking Now!
Lori Gruen, PhD, Professor of Philosophy, Feminist, Gender, and Sexuality Studies, and Environmental Studies, Wesleyan University
Alexander Guerrero, PhD, Assistant Professor of Medical Ethics and Health Policy, Assistant Professor of Philosophy, University of Pennsylvania
Kimberly Hendrickson, PhD Candidate, Boston College
Kathryn Hinsch, Women’s Bioethics Project, Albany Medical College
Dale Jamieson, PhD, Professor of Environmental Studies and Philosophy, Affiliated Professor of Law, Director of Animal Studies Initiative, New York University
Peter Jaworski, PhD, Visiting Assistant Professor, Georgetown University
Ricki Lewis, Author and Geneticist, Alden March Bioethics Institute
Ana Lita, PhD, Executive Director, Global Bioethics Initiative
Ruth Macklin, PhD, Professor of Bioethics, Albert Einstein College of Medicine
Susan M. Mathews, PhD, Ethicist, North Hutchinson Island, FL
Victoria McGeer, PhD, Research Scholar, Princeton University
Michelle N. Meyer, JD, PhD, Assistant Professor and Director of Bioethics Policy, Union Graduate College-Icahn School of Medicine at Mount Sinai Bioethics Program
Jonathan D. Moreno, PhD, David and Lyn Silfen University Professor of Medical Ethics, History and Sociology of Science, University of Pennsylvania
Philip Pettit, PhD, Professor, Princeton University
Laura Purdy, PhD, Professor Emerita of Philosophy, Wells College
Peter Singer, Ira W. DeCamp Professor of Bioethics, Princeton University
Adam Shriver, Postdoctoral Fellow, The University of Pennsylvania
Michael Smith, DPhil, McCosh Professor of Philosophy, Princeton University
Lance K. Stell, PhD, Clinical Professor of Medicine, UNC Chapel Hill School of Medicine; Medical Ethicist, Director, Ethics Consultation Service, Carolinas Medical Center
James S. Taylor, PhD, Associate Professor of Philosophy, the College of New Jersey
Larry S. Tempkin, PhD, Distinguished Professor and Chair, Rutgers, the State University of New Jersey
Robert D. Truog, MD, Director, Center for Bioethics, Harvard Medical School, Harvard University
Robert M. Veatch, PhD, The Kennedy Institute of Ethics, Georgetown University 

Lawyers

Rocco F. Andriola, JD, Chairman of Save Lives Now New York Foundation
Jon Bouker, Partner and Government Relations Co-Practice Group Leader, Arent Fox
Olevia Boykin, Student, Yale Law School
Paul Brest, JD, Former Dean and Professor Emeritus (Active), Stanford Law School
Erwin Chemerinsky, JD, Dean of the School of Law, University of California Irvine
I. Glenn Cohen, JD, Assistant Professor of Law at Harvard Law School; Co-director of Harvard Law School’s Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics
Lloyd Cohen, JD, Professor of Law, George Mason University School of Law
Vanessa Dube, Law Student, Washington, DC
Bruce Ellis Fein, JD, Lawyer
Martin Fleisher, JD, Managing Director, Dearborn Capital Partners, LLC
Lynsey Gaudioso, Yale Law School
Rosanna Gonsiewski, Senior Administrative Assistant, Yale Law School
Michele B. Goodwin, JD, LLM, Chancellor’s Chair in Law, University of California-Irvine Law School
Melissa Henzel, Yale Law School
Stephen Isaacs, Lawyer, San Francisco
Rick K. Jones, Counsel, Pennsylvania Legislative Budget & Finance Committee
Jonathan Kaufelt, Attorney and Activist, Santa Monica, CA
Beezly Kiernan, Student, Yale Law School
Adam Kolber, JD, Professor of Law, Brooklyn Law School
Kimberly D. Krawiec, JD, Kathrine Robinson Everett Professor of Law, Duke University
Howard Lempel, Law Student, Yale University
Heather Mac Donald, JD, Thomas Smith Fellow, Manhattan Institute
Stephen J. Morse, JD, PhD, Ferdinand Wakeman Hubbell Professor of Law & Professor of Psychology and Law in Psychiatry, Associate Director, Center for Neuroscience & Society, Diplomate, American Board of Professional Psychology (Forensic), University of Pennsylvania Law School
Katherine Munyan, Student, Yale Law School
Eric Posner, JD, Kirkland and Ellis Distinguished Service Professor of Law, The University of Chicago Law School
J.L. Pottenger, Jr., JD, Nathan Baker Clinical Professor of Law, Yale Law School
Marina Romani, Student, Yale Law School
Gregory Shaffer, JD, Vice President of the American Society of International Law; Director, Center on International, Transnational, and Comparative Law, University of California Irvine School of Law
Alexios Shaw, Student, Yale Law School
Scott Slawson, JD, Attorney, Timnath, CO
Alexander Taubes, Yale Law Student
Terry Tomsick, JD, Attorney, Denver Colorado
Andrew W. Torrance, PhD, JD, Professor of Law, University of Kansas and Visiting Scholar, MIT Sloan School of Management
Julie Veroff, Student, Yale Law School
Eugene Volokh, JD, Gary T. Schwartz Professor of Law, UCLA School of Law 

Religious Leaders

Rev. Dr. Douglass Bailey, President and Founder, Center for Urban Ministry, Inc., Winston-Salem, NC
Edie Beaujon
Rev. Dr. Rita Nakashima Brock, PhD
, Professor of Theology and Culture, Director, The Soul Repair Center, Brite Divinity School, Ft. Worth, TX
The Rev. Dr. John Buehrens, Senior Minister, First Unitarian Universalist Church of San Francisco; Past President, Unitarian Universalist Association of Congregations
Pat Clark, Former Executive Director, Fellowship of Reconciliation
The Very Reverend Gary R. Hall, PhD, Dean, Washington Cathedral
Rev. Robert Lee Hill, Community Christian Church, Kansas City, MO
Kokyo Henkel, Head Teacher, Zen Center of Santa Cruz, CA
Mary E. Hunt, PhD, Co-Director, Women's Alliance for Theology, Ethics and Ritual (WATER)
Rabbi Steven Jacobs, Rabbi, Central Conference of American Rabbis
Rabbi Peter S. Knobel, Rabbi Emeritus, Beth Emet the Free Synagogue
Rev. Harry Knox, President, Religious Coalition for Reproductive Choice
Rabbi Douglas E. Krantz, Rabbi, Congregation B'nai Yisrael, Townsend, DE
Rev. Dr. Kah-Jin Jeffrey Kuan, PhD, President, Claremont School of Theology
Rabbi Howard Mandell, Congregation Beth Israel of the Merrimack Valley, New Haven, CT
Pat Mathis, Member, Board of Trustees, Episcopal Divinity Schoo
Ann Neumann, Visiting Scholar, Center for the Study of Religion and Media, New York University
Michael Novak, Trustee and Visiting Professor at Ave Maria University, Ave Maria, FL
Rev. Peter Panagore, Reverend, First Radio Parish Church of America
Moses Peterson, Pastor, the Apostolic Church, Houston, TX
The Very Reverend Katherine Hancock Ragsdale, President and Dean, Episcopal Divinity School, Cambridge, MA
Rev. Osagyefo Sekou, Pastor for Formation and Justice, the First Baptist Church in Jamaica Plain, MA
Rev. Paul H. Sherry, Former President, United Church of Christ
Rev. Lloyd Steffen, PhD, Professor, Religion Studies, University Chaplain, Lehigh University
Rev. Carlton Veazey, Former President, Religious Coalition for Reproductive Choice
June Wink, Potter, Quaker, Sandsfield, MA
Seung Ai Yang, PhD, Associate Professor of New Testament, Chicago Theological Seminary
Barbara Brown Zikmund, PhD, Former President of Hartford Seminary, Hartford, CT

Academics

Jonathan Baron, PhD, Professor of Psychology, University of Pennsylvania
Paul Bloom, PhD, Brooks and Suzanne Ragen Professor of Psychology, Yale University
Jeffrey Borenstein, PhD, Lecturer in Physics, Harvard Extension School
Leanne Boucher, Associate Professor, Nova Southeastern University
Carol Cohn, PhD, Consortium on Gender, Security and Human Rights
Michael Crescimanno, PhD, Professor of Physics, Youngstown State University
Martha J. Farah, PhD, Walter H. Annenberg Professor in the Natural Sciences, University of Pennsylvania
Andew Gordon, PhD, Professor of History, Harvard University
Charles Grair, PhD, Texas Tech University
Catherine Lutz, PhD, Thomas J. Watson, Jr. Family Professor of Anthropology and International Studies, Brown University
Rachel M. McCleary, PhD, Senior Research Fellow, Harvard Kennedy School
Steven Pinker, PhD, Johnstone Family Professor, Department of Psychology, Harvard University
Paul Roossin, Science Director, Nanotronics Imaging
Harold T. Shapiro, PhD, President Emeritus, Princeton University
Azim Shariff, PhD, Assistant Professor of Psychology, University of Oregon
Alex Shaw, PhD, Professor, University of Chicago
David Tannenbaum, PhD, University of Chicago
Magda Teter, PhD, Chair, Department of History, Wesleyan University
Philip E. Tetlock, PhD, Annenberg University Professor, Psychology Department and Wharton School, University of Pennsylvania ◊ Travis M. Timmerman, Syracuse University
David L. Weimer, PhD, Professor of Political Science and Public Affairs, Robert M. La Follette School of Public Affairs, University of Wisconsin-Madison
Peter D. Zimmerman, PhD, Emeritus Professor of Science and Security, King's College London, Great Falls, VA 

Economists

Joe Antos, Wilson H. Taylor Scholar in Health Care and Retirement Policy, American Enterprise Institute
T. Randolph Beard, PhD, Professor of Economics, Auburn University
Kevin Corinth, PhD, Research Fellow in Economic Policy Studies, American Enterprise Institute
Tyler Cowen, PhD, Professor of Economics, George Mason University
Judd Kessler, PhD, Assistant Professor of Business Economics and Public Policy, the Wharton School, University of Pennsylvania
Mario Macis, PhD, Assistant Professor, Johns Hopkins University
Eric Maskin, PhD, Adams University Professor, Harvard University, Nobel Laureate 2007
Mark J. Perry, PhD, Professor of
Economics, University of Michigan-Flint
Alex Tabarrok, PhD, Bartley J. Madden Chair in Economics, George Mason University
James Trussell, PhD, Professor of Economics and Public Affairs, Princeton University
Alan D. Viard, PhD, Resident Scholar, American Enterprise Institute 

Public Policy

Heather Booth, Washington, DC
Philip J. Cook, PhD, ITT/Sanford Professor of Public Policy, Duke University
James K Glassman, Founding Executive Director, Bush Library and Institute
David Grosso, Councilman at Large, DC City Council
Mark A. R. Kleiman, PhD, Professor of Public Policy, UCLA School of Public Affairs
Barbara Ledeen, Chevy Chase, MD
Jim Leitzel, PhD, Director, Public Policy in the College, University of Chicago
Norman Ornstein, PhD, Resident Scholar, American Enterprise Institute
Glenn W. Smith, Director, Progress Texas PAC 

Writers

Angela Bonavoglia, Freelance Journalist and Author
Larissa MacFarquhar, Staff Writer, The New Yorker
Laura Newman, Writer, New York, NY
Christine S. Rosen, PhD, Senior Editor, The New Atlantis: A Journal of Technology & Society
Jordan Stolper, CEO, StoryDesk
Meredith Tax, Writer, New York, NY 

Kidney Donors

Kurt Anderson, Providence, RI
Michele Austin, Sparks, NV
Alexander Berger, Senior Research Analyst, GiveWell
Lindsey Beyerstein, Investigative Journalist
Michelle J. Bourassa, Keene, NH
Ira Brody, Alliance for Paired Donation
Mary Clynes, Florissant, MO
Morgan Falke, Austin, TX
Alex Holloway, Fort Worth, TX
Tammy Johnson, St. Paul, MN
Peter Keating
Zell Kravinsky

Beth Cone Kramer, Calabasas, CA
Kathy Madison, Elk Grove, CA
Josh Morrison, JD, and Thomas Kelly, PhD Candidate, Co-Executive Directors, WaitList Zero
Eric Parrie
Representative Linda Tyler
, President, Tyler2, Inc., Board Member of the American Association of Kidney Patient
Tamara Villaverde, Rockledge, FL
Leslie Wolfe, PhD, President, Center for Women's Policy Studies, DC

Other/Non-affiliated

Emlyn Addison, Providence, RI
Donna Adelsberg, Norwalk, OH
Rio Alvarado, Asheville, NC
Clara Atchley, Calabash, NC
Claudette Bailey, In need of a kidney, Pembroke Pines, FL
Barbara Baker, Los Altos, CA
Destiny Baker, Big Stone Gap, VA
Paul Basken, Washington, DC
Kenneth R. Bazinet, Takoma Park, MD
Katie Beckheyer, San Francisco, CA
Steve Beinstein, Owings Mills, MD
Arleen Best, Ardsley, NY
Richard Blaine, Las Vegas, NV
Blair Bolles, New York, NY
Anne Brown, Phoenix, AZ
Paul Brown, Brooklyn, NY
Kim Bryant, Hamilton, OH
Robert Buchanan, La Mesa, CA
Ann Bush, DVM, Saco, ME
Kathryn Caffery, Orlando, FL
Gerald G. Crowther, Trabuco Canyon, CA
Brian Curran, Transplant Candidate, Longmont, CO
Christine Dakin, Independent Artist, Radcliffe Institute of Advanced Study, Fellow, Faculty Neighborhood Playhouse School of the Theatre, Alvin Ailey School
Ted Dahmus, Father is living on 1/2 of a kidney, Cincinnatti, OH
Eric Dezenhall, Washington, DC
Helen Diagama                                 
Robert J. Doyle, Wilmington, DE
Julie Esris, Boston, MA
Lola Feathers, Personal Care Worker, Friendship, WI
Elaine Flanagan, Carencro, LA
Kathleen Flannery, Long Beach, CA
Nikki Fleser, On transplant list, Rolla, MO
Agnes Franzen, Goodyear, AZ
Heather Fries, Shamokin Dam, PA
Brian Gabay, New York, NY
Kathy Geisler, Port Charlotte, FL
Angela Giral, Retired Librarian, Columbia
Janet Gitterman, Montville, New Jersey
Jenifer Groves, Somerdale, NJ
Mark Hanis, Washington, DC
Marianne Harding, Washington, DC
Jennifer Harrison, Illinois
Bonnie J. Harvey, Ocean View, DE
Thomas S. Harvey, Ocean View, DE
Pamela Heaberlin, Fort Collins, CO
John Heaney, Principal, Organomics, Bethesda, MD
Charlene Hinojosa, Walla Walla, WA
Elizabeth Hourigan, Social Needs Teacher, Wilmington, NC
Jeff Howard, Levittown, NY
Jessica Hunter, New Haven, CT
Cathy Jaskey, Addison, IL
Dustin Jordan, Vilonia, AR
Jamie Jordan, Vilonia, AR
Brian Kelly, University of Central Florida
Alison Kennedy, Brooklyn, NY
William Kennedy, Bowling Green, OH
Gregory Kimble, Daughter needs a kidney transplant
Sharon Kissling, Treasurer, WAWA, Wilmington, NC
Bobbie Kithcart, Glendale, NY
William Kramer, Port Washington, NY
Josh Kraut, Renal Failure Patient, Walla Walla, WA
Robert Kust, RNK Sales, Cincinnati, OH
Sue Kust, Cincinnati, OH
Christine La Grace, Houston, TX
Marcia Lacy, Conway, AR
Lily Lamboy
Patil Lavaggi, Sherrman Oaks, CA
Trina Layne, Currently on transplant list, Forest, VA
Larry Lewis, PhD, Scotia, NY
Mike Lietz, Naperville, IL
Lily Leung, Library Technician II, SEIU Local 1021, Alameda, CA
Dimitri Linde, Cambridge, MA
Cheryl Link, Denver, CO
Janice Lock, Homemaker, Carencro, LA
Joseph Lock, Human Resource Consultant and Owner, Human Resource Consultants of Lafayette, LLC, Carencro, LA
Taurus Londono, Lenox, MA
Rocky Lotito, New York, NY
Monica C. Magoon, Board Member, Phoenix Chapter PKD
Brett Maiden, PhD Student, Emory University
Pam Markham, Retired teacher, Conway, AR
Stephanie Martinez, Transplant Recipient, Janesville, IA
Jeffrey McCall, Albuquerque, NM
Frankie McDowell, Brookings, SD
Andrew Thomas McKenzie, New York, NY
Wandah McKinney, Chula Vista, CA
Robin Messing, Watertown, MA
Polly Miller, Transplant Recipient, Fort Wayne, IN
Goodwin Morrison, Boynton Beach, FL
Robin Morrison, Boynton Beach, FL
Daniel Mysel, Highland Park, IL
Karen Natoli, Madison, WI
Jeff Nelson, Sussex, WI
Patti Norton, Fort Wayne, IN
Paul Novell
Van Nguyen, Milpitas, CA
Thomas D. Owens, Stage 4 CKD, Wyoming, MI
Virginia Padilla, Sylvan Lake, MI
Katiela Palma, Bloomington, IN
Henry Palmer, Gainesville, FL
Sandra Peters, Rustburg, VA
Meredith Phillips, Brooklyn, NY
Benjamin Pollins, McLean, VA
Victor Porter, Paleontologist, the Childrens Museum of Indianapolis
Heather Pratt, Missouri City, TX
Shannon Pritchett, Pooler, GA
Ron Ramanujam, New York, NY
Matthew Reardon, Volunteer, Life-Vietnam
Kristina Richardson, Henderson, NV
Kathy Robinson, Kidney Transplant Patient, Bedford, TX
Andrew Rock, Graduate Student, Columbia University
Dolores Rogers, New York, NY
Alan Rosenblatt, Sr. VP for Digital Strategy, turner4D
Beverly Rosson, Austin, TX
Zemuly Sanders, La Grange, TN
Woodson J. Savage, Cordova, TN
Kaitlyn Schaeffer, New York
Rob Schebel, West Des Moines Public Schools, IA
Gary J. Schmitt, Resident Scholar, American Enterprise Institute
Klaus Schober, Boulder, CO
Joyce Schorr, Sherman Oaks, CA
Rachel Clare Schreibmaan, Washington, DC
David Simmons, Transplant Recipient, Evanston, IL
Linda Simon, Flossmoor, IL
Argy Skaleri, Great Expectations
Sara Sobkowiak, Uxbridge, MA
Judith Soukup, PhD, Senior Scientist, Retired from SAIC, San Diego, CA
Steve Spencer, New Haven, IN
Bita Taubes, Madison, CT
Jacqueline Thomas-Rodrigues, Kidney Transplant Recipient, Louisville, KY
Lisa Thonas, Elizabethtown, KY
Pam Tigani, Port Chester, NY
Erica Tusa, ESRD Stage 5, Oakland Park, FL
Molly Valdini, Coconut Creek, FL
Susan Waddington, Dallas, TX
Kim Wagner, Transplant recipient, Albuquerque, NM
Jamison Wagner, Albuquerque, NM
Karyn Waxman, PKD Foundation Memphis Chapter Coordinator
Scott Weinstein, Brooklyn, NY
John Welsh, Lavergne, TN
Teresa Wilkins, Port Washington, NY
Scott Witcher, Mishawaka, IN
Boris Yakubchik, Rutgers University
George Zaloom, Pacific Palisades, CA
Valerie Zamberletti, President, Zamberletti & Associates, Minneapolis, MN 

International Supporters

Riley Burke, Berlin, Germany
Jacqui Clarke, Peregian Beach, Australia
Sam Dumitriu, University Of Manchester
Dom Emery, Melbourne, Australia
Daniel Frank, Law Student, Queen's University, Kingston, Ontario
Brian Hedden, Lecturer in Philosophy at the University of Sydney
Hilde Heynen, PhD, Professor, University of Leuven
J. Menzies, Melbourne, Australia
Nils Murken, Bremen, Germany
Dorian Peters, University of Sydney
Theron Pummer, Oxford University
Janet Radcliffe-Richards, Professor of Practical Philosophy and Fellow, Distinguished Research Fellow and Consultant at the Oxford Uehiro Centre for Practical Ethics, University of Oxford
Steve Stewart-Williams, PhD, Swansea University
Ben Stoller, Toronto, Canada
Irene Tognetti, Activist, Wollongong, Australia 

 

©Copyright 2014 W. Kramer

(Draft) Donor Bill of Rights

Any person considering becoming a kidney donor should be guaranteed the following:

- A process which respects the motivations, preferences and time considerations of the would-be donor.

- Protection from financial hardship due to their desire to give

- Access to the most convenient nephrectomy clinical specialists for work-up   (nationwide nephrectomy network...geographic convenience)

- Not to worry about future medical complications as a result of the transplant.

- Their desired level of confidentiality

- To be fully up to date and informed throughout the entirety of the process.

- Transparency and understanding on all issues of risk, life expectancy, complication, recovery time, mortality rates and long-term outcomes, as well as rewards.

 



This document, adapted from the American Hospital Association’s “Patient Bill of Rights”, is provided for the prospective organ donor, for transplantation professionals, government officials, and interested parties in order to better understand and appreciate the unique needs of live organ donors.

Living Donor Advocacy

The living organ donor has the right to considerate and respectful care.

The living organ donor has the right to contact information (name, credentials, and phone number) for the individual who has primary responsibility for his/her care from the time of the initial appointment until transfer of care to the donor’s primary care physician.

The living organ donor has the right to designate an independent advocate who is not employed by the transplant center.

The living organ donor has the right to a donor team consisting of, at least, an internal medicine physician (or an organ-specific specialist), the independent donor advocate, a transplant social worker, and a psychiatrist.

The living organ donor has the right to request assistance from the donor advocate team in the preparation of a general statement of unsuitability for donation, which will not include falsified medical information.

The living organ donor has the right to request that family or loved ones be given the opportunity to discuss openly with the independent donor advocate team and the surgical team their concerns in a safe and non-threatening environment which does not include the recipient or any member of the recipient’s family.

 

Living Donor Ethics

The living organ donor has a right to know there are no uniform standard selection, evaluation, or discharge criteria for live donation (i.e., no standards for age, medical history, psychiatric history, or psychosocial background.)

The living organ donor has the right to know there is no uniform standard for informed consent for live organ donation. 

The living organ donor has the right to know there has never been a public policy discussion on the ethics of live organ donation in the United States.

The living organ donor has the right to make a decision about donation in a setting free of coercion or pressure.

 

Living Donor Informed Consent

The living organ donor has the right to know that no regulatory body or registry currently tracks living organ donation nor long-term living donor morbidity and mortality in the United States.

The living organ donor has the right to informed consent based on clear information at each step of the evaluation and donation process. The consent for evaluation should be separate from the consent for surgery.

The living organ donor has the right to and is encouraged to obtain from doctors and other caregivers (nurses, transplant coordinators, social workers) appropriate, current, and understandable information about diagnosis, treatment, and prognosis. The living organ donor is entitled to discuss and request information about the specific procedures and/or treatments, the risks involved, and the length of recuperation.

The living organ donor has the right to know that there is potential for:
- Surgical complications, including the risk of donor death;
- Organ failure and the need for future organ transplant for the donor; 
- Other medical complications, including long-term complications and complications currently unforeseen;
- Scars;
- Pain;
- Fatigue and abdominal or bowel symptoms such as bloating and nausea;
- Problems with body image;
- Transplant recipient death; 
- Transplant recipient rejection and need for re-transplantation; 
- Recurrent disease in a transplant recipient;
- Post surgery adjustment problems; 
- Impact on the donor’s family or next of kin; 
- Impact on the transplant recipient’s family or next of kin;
- Impact of donation on the donor’s lifestyle;
- Out of pocket expenses; 
- Child care costs; 
- Possible loss of employment; 
- Impact on the ability to obtain future employment;
- Impact on the ability to obtain or afford health and life insurance.
(10A NCAC 13B. 5500 Supplemental Rules for Hospitals Providing Living Organ Donation Transplantation Services)

The living organ donor has the right to ask and be informed of business relationships among the hospital, educational institutions, other health care providers, or payers that may influence the donor’s treatment and care.

The living organ donor has the right to consent to, or decline, to take part in research studies affecting care and treatment or requiring direct patient involvement, and to have those studies fully explained prior to consent.

 

Recipient Issues

The living organ donor has the right to be fully informed of the risks, benefits, and alternative treatments available to his or her recipient.

The living organ donor has the right to information regarding candidate listing, multiple listing, and that in some regions deceased donor organs are more readily available with a shorter wait time.

The living organ donor has the right to expect that if, during the perioperative period, it is discovered that the donor organ is unsuitable in any way for the recipient or that removing it (or some portion of it) will put the donor at risk for previously unforeseen complications, the procedure will be aborted.

 

 Living Donor Hospital Care

The living organ donor has the right to the same standard of care as his or her recipient.

The living donor has the right to ask for and receive surgeon and center-specific outcome data.

The living organ donor has the right to know the identity and credentials of the doctors, nurses, and practitioners involved in their care, as well as when those involved are students or other trainees.

The living organ donor has the right to know that there are no legal or professional standards for surgeon qualifications for kidney, lung, intestine or pancreas live donor surgeries. (Qualifications for live liver donor surgeons are limited to those certified by the OPTN or regulated by the states of New York and North Carolina.)

The living kidney donor has the right to a primary surgeon who is a board-certified urologist or general surgeon with demonstrated and documented expertise in both open and laparoscopic live donor nephrectomy. 

The living organ donor has the right to choose his/her surgeon.

The living kidney donor has the right to a primary surgeon who is not involved in the care of the recipient.

The living donor has the right to be followed by an internal medicine physician at least daily until discharge.

The living organ donor has the right to the standard of care for his or her surgery (and appropriate to the level of risk) were it not a living donation but done for the medical necessity of the donor.

The living organ donor has the right to be transferred from the operating room to a unit that is dedicated to the care of live organs donors and appropriate to the level of risk for the organ donated. The professional registered nursing ratio to patients on a post-operative surgical nursing division shall be at a minimum of 1:4 on all shifts.

The living donor has the right to 24-hour/seven days a week coverage by general surgery residents at the postgraduate year 2 level or higher or a transplant fellow and under the supervision of an Attending surgeon until safely discharged and during the follow-up period.

 

Other Living Donor Concerns

The living organ donor has the right to have an advance directive (such as a living will, health care proxy, or durable power of attorney for health care) and a designated surrogate decision-maker with the expectation that the hospital will honor the intent of that directive to the extent permitted by law and hospital policy. Health care institutions must tell patients of their rights under state law and hospital policy to make informed medical choices, ask if the patient has an advance directive, and include that information in patient records.

The living organ donor has the right, at any time during evaluation, inpatient care, or post-discharge, to designate additional physicians to receive medical updates.

The living organ donor has the right to expect discharge follow-up care for 24 months consistent with the mandatory OPTN data collection requirement (under section 121.11 (b) (2) of the OPTN final rule.)

The living organ donor has the right to timely attention to complications.

The living kidney donor has the right to full Medicare A and B coverage for evaluation, testing, hospital stay, and for any complications (medical or surgical) as established by statute in 1972 per Section 1881 of the Social Security Act.

The living non-renal organ donor has the right to the full medical coverage for testing, evaluation, hospital stay, and for any complications (medical or surgical) under the recipient’s health care benefit.

 

Living Organ Donor Privacy

The living organ donor has the right to every consideration of privacy. Case discussion, consultation, examination, and treatment should be conducted so as to protect each donor's privacy.

The living organ donor has the right to expect that all communications and records related to his/her care will be treated as confidential. The living organ donor has the right to expect that the hospital will stress the confidentiality of this information when it releases it to any other parties entitled to review information in these records.

 

Living Organ Donor’s Right to Know

The living organ donor has the right to review the records about his/her care and to have the information explained or interpreted.

The living organ donor has the right to expect reasonable continuity of care when appropriate and to be informed by doctors and other caregivers of available and realistic care options when hospitalization is no longer appropriate.

The living organ donor has the right to be informed of hospital policies and practices that relate to patient care treatment and responsibilities.

The living organ donor has the right to be informed of available resources for resolving disputes, grievances, and conflicts, such as ethics committees, patient representatives, or other mechanisms available in the institution.



Copyright 2006 Rhonda Boone, Vickie Hurewitz, and Donna Luebke

Rhonda Boone
Co-founder, The Live Organ Donor Education & Protection Project (LODEPP) Widow of Danny Boone, Live Liver Donor who died in 1999, 21 days after donating a portion of his liver to his brother in North Carolina

Vickie Hurewitz
Co-founder, The Live Organ Donor Education & Protection Project (LODEPP) 
Widow of Mike Hurewitz, Live Liver Donor who died in 2002, 3 days after donating 60% of his liver to his brother in New York

Donna L. Luebke, MSN, CNP Kidney donor to sister, 1994.
MetroHealth Medical Center/Case Western Reserve University
Donor advocate/nurse consultant, Living Organ Donor Advocate Program (www.lodap.com)



References

American Medical Association. (2005). Transplantation of organs from live donors. Report on the Council of Ethical and Judicial Affairs. CEJA Report 5-A-05. 

Benner P. (2002). Living organ donors: Respecting the risks involved in the “Gift of Life.” American Journal of Critical Care. 11:266-68.

Consensus Statement on the Live Organ Donor. The authors from the Live Organ Donor Consensus Group. (2000), JAMA. 284; 1-11.

Delmonico FL: Council of the Transplantation Society. (2005). Report of the Amsterdam Forum on the care of the live kidney donor: Data and medical guidelines.
Transplantation. 79 (6 Suppl):S53-66.

Delmonico FL, Graham WK. (2006). Direction of the Organ Procurement and Transplantation Network and United Network for Organ Sharing regarding the oversight of live donor transplantation and solicitation for organs. American Journal of Transplantation. 6(1):37-40.

NYCRR Title 10, Section 405.22, (1) Live Adult Liver Transplantation Services.

10A NCAC 13B. 5500 Supplemental Rules for Hospitals Providing Living Organ Donation Transplantation Services.

New York State Committeee on Quality Improvement in Living Liver Donation. A Report to: New York State Transplant Council and New York State Department of Health. (2002). 

Shelton, D (2005, May 8-12). Lives on the line: Organ donors face unforeseen dangers.
St. Louis Post-Dispatch. 

Shiffman ML, Brown RS, Oltoff KM, Everson G, Miller C, Seigler M, Hoofnagle JH. Living Donor Liver Transplantation: Summary of a Conference with The National Institutes of Health. Special Report. (2002). Liver Transplantation. 8; 174-188.

Zink S, Weinreib R, Sparling T, Caplan AL. (2005). Living donation: focus on public concerns. Consensus statement. Clin Transplant. 19; 581-585.

 

More Kidneys

Kidneys in Common is being created specifically to energize and support efforts to educate and recruit altruistic kidney donation and provide a game-changer in the fight against this disease. 

More Kidneys --
When established, Kidneys in Common, Inc. will bring increasing numbers of living kidneys into the process. The truth is that despite huge success of signing people up as deceased organ donors and the acceptance of Kidney Paired Donation as standard medical practice, the waiting list for kidney transplants has grown rather than shortened. Positive factors like improved automobile safety have combined with negative factors such as increases in diabetes to neutralize progress. It is essential that a new national dialogue take place that can clear the social and ethical obstacles to discussing and supporting altruistic kidney donation. As we well know, patients and their families who are confronting the reality of kidney failure do not always find the information, options and support they need when they must rely solely upon a medical system which commoditizes kidneys. Kidneys In Common will work to provide a path for kidney donation that is safe from those interests and ultimately make more altruistic donations possible. Even a small percentage increase in the number of non-directed donors would have a very positive impact on the kidney shortage.

Listing: National FaithBased, Fraternal, Union, Civic and Veterans Organizations

 

Listings of American National

Faith Based, Fraternal, Union, Civic and Veterans Organizations

Based On

Membership and Mission

 

 

Fraternal Organizations with Significant Memberships

  1. The Masons                                                                  www.msana.com/msastats.asp#us
  2. The Elks:  B.P.O.E.                                                      www.elks.org/who/information.cfm
  3. The Odd Fellows; IOOF; Three Link Fraternity    www.ioof.org/
  4. Moose; Moose Lodge; The Family Fraternity        www.mooseintl.org/
  5. The Rotary Club; Rotary; The Rotarians                 www.rotary.org
  6. Kiwanis; Key Club; Kiwanians                                 www.kiwanis.org
  7. The Jaycees, the JCs                                                  www.jci.cc/local/usa
  8. Knights of Columbus                                                 www.kofc.org/en/
  9. The Auxiliary (Coast Guard)                                  http://www.cgaux.org/
  10. Civil Air Patrol (Airforce)                                         www.gocivilairpatrol.com
  11. Knights of Pythias                                                     www.pythias.org
  12. Lions Club International                                         www.lionsclubs.org/
  13. B’nai Brith                                                                  www.bnaibrith.org
  14. Optimist International                                            www.optimist.org
  15. Samaritans                                                                www.intsam.org
  16. Woodmen of the World                                          www.woodmen.org
  17. Zonta International                                                 www.zonta.org
  18. Gyro International                                                  www.international.gyro.ws
  19. International Order of Alhambra                         www.orderalhambra.org
  20. Tau Gamma Phi (Philippine Americans)            www.taugamma

Unions with Significant Memberships

     Name                                                                                       Membership        Website

  1. Amalgamated Transit Union                                              190,000        www.atu.org
  2. American Association School Employees                         111,851        www.aaee.org
  3. American Federation of Government Employees           289,023        www.afge.org
  4. American Federation of State County & Municipal      1,459,511        www.afscme.org
  5. American Federation of Teachers                                    828,512        www.aft.org
  6. American Nurses Association                                          152,294        www.nursingworld.org
  7. American Postal Workers Union                                     286,700        www.apwu.org
  8. Communication Workers Union of America                   545,638        www.cwa-union.org
  9. International Alliance of Stage Employees                     122,000        www.iaste.org
  10. Int’l Assn. Bridge, Structural, Iron Workers                     125,347        www.ironworkes.org
  11. International Association of Firefighters                          271,463        www.iaff.org
  12. Intn’l Assn.  of Machinist & Aerospace Workers             653,791        www.goiam.org
  13. International Brotherhood of Electrical Workers             704,794        www.ibew.org
  14. International Long Shore & Warehouse Workers            424,579        www.ilwu.org
  15. International Union of Operating Engineers                   392,584        www.iuoe.org
  16. International Union of Painters & Allied Trades               127, 279        www.iupat.org
  17. Laborers International Union of North America              669,772        www.liuna.org
  18. National Association of Letter Carriers                            292,221        www.nalc.org
  19. National Education Association of America                  2,731,419       www.nea.org
  20. National Postal Mail Handlers Union                             269,204        www.npmhu.org
  21. National Rural Letter Carriers Association                       104,717        www.nrica.org
  22. Service Employees International Union                       1,500,000        www.seiu.org
  23. Sheet Metal International Association                            148,607        www.smart-union.org
  24. Teamsters                                                                       1,400,00        www.teamsters.org
  25. Transport Workers Union of America                              125,398        www.twu.org
  26. Unite Here                                                                       455,346        www.unitehere.org
  27. United Association                                                           324,043        www.ua.org
  28. United Auto Workers                                                       400,000        www.uaw.org
  29. United Brotherhood of Carpenters and Joiners                522,416        www.carpenters.org
  30. United Food and Commercial Workers                        1,300,000        www.ufcw.org
  31. United Steel Workers                                                      860,000        www.usw.org
  32. Teamsters for a Democratic Union                                                         www.tdu.org
  33. AFL-CIO Industrial Organizations                              11,650,000        www.aflcio.org

 

Faith Based Organizations

This group represents our most complete list.  We have a spread sheet that has complete contact information on most of the organizations listed below.

 Name                                                                  Members             Congregations                        Website

African Methodist Episcopal Church                    2,500,000                                                                www.ame-church.com/
African Methodist Episcopal Zion Church            1,431,000               3,226                                        www.amez.org
Alliance of Baptists                                                                                                                                  www.allianceofbaptists.org/  
American Baptist Association                                  275,000                1,760                                        www.abaptist.org/home.shtml
American Baptist Churches USA                          1,500,000               3,800                                        www.abc-usa.org/
Antiochen Orthodox Arch Diocese of NA                 65,000                   220                                        www.antiochian.org/
Armenian Apolistic Church                                       220,000                    28                                        www.armenianprelacy.org/
Assemblies of God USA                                         2,914,000             12,371                                        www.ag.org
Baptist Bible Fellowship                                         1,200,000              4,500                                        www.bbfi.org/
Baptist General Conference -Worldwide                 876,000                   141                                        www.convergeworldwide.org/
Baptist Missionary Association of America           1,334,000                  235                                         www.bmamissions.org/

Catholic Church                                               66,000,000             19,484                                        www.bmamissions.org/

Archdiocese of Anchorage                                                                                                                      www.archdioceseofanchorage.org
Archdiocese of Atlanta archatl.com
Archdiocese of Baltimore                                                                                                                         www.archbalt.org
Archdiocese of Boston                                                                                                                             www.bostoncatholic.org/
Archdiocese of Chicago                                                                                                                          www.archchicago.org
Archdiocese of Cincinnati                                                                                                                        www.catholiccincinnati.org/
Archdiocese of Denver                                                                                                                            www.archden.org
Archdiocese of Detroit
Archdiocese of Dubuque
Archdiocese of Galveston-Houston
Archdiocese of Hartford
Archdiocese of Indianapolis
Archdiocese of Kansas City in Kansas
Archdiocese of Los Angeles
Archdiocese of Louisville
Archdiocese of Miami
Archdiocese of Milwaukee
Archdiocese of Mobile
Archdiocese of New Orleans
Archdiocese of New York
Archdiocese of Newark
Archdiocese of Oklahoma City
Archdiocese of Omaha
Archdiocese of Philadelphia
Archdiocese of Portland
Archdiocese of Saint Paul and Minneapolis
Archdiocese of San Antonio
Archdiocese of Santa Fe
Archdiocese of San Francisco
Archdiocese of Seattle
Archdiocese of St.Louis
Archdiocese of Washington
Byzantine Archdiocese of Pittsburgh
Byzantine Archdiocese of Philadelphia
Disciples of Christin                                                3,818,000                     879                        www.disciples.org/ 
Christian Churches and Churches of Christ           5,600,000                  1,072                        www.equip.org
Christian Congregations                                        1,438,000                      117
Christian Methodist Episcopal Church                   2,340,000                     719                        www.thecmechurch.org/
Christian Missionary Alliance                                1,964,000                     346
Christian Reformed Church in America                      733,000                    200                        www.rca.org/
Church of God (Anderson Indiana)                           234,000                 2,353
Church of God (Cleveland, Tennessee)                     753,000                 6,060
Church of God in Christ                                          5,500,000               15,300                      www.cogic.org/hc2015/
Church of God in Prophecy                                        770,000                 1,908                      www.cogop.org
Church of Jesus Christ Latter Day Saints                 5,800,000               13,000
Church of the Brethren                                                 141,000                 1,095                      www.brethren.org/
Church of the Nazarene                                              627,000                 5,101                      www.nazarene.org/contact-us
Churches of Christ                                                   1,500,000                 1,500                      www.church-of-christ.org/
Community of Christ                                                   140,000                  1,236                     www.cofchrist.org/
Conservative Baptist Assn of America                       200,000                  1,200
Conservative Friends (Quakers)                                 104,000                  1,200                    www.conservativefriend.org/
Coptic Orthodox Churches                                        200,000                  1,000
Cumberland Presbyterian Church                                 87,000                      774                    www.cpcachurch.org/
Episcopal Church, USA                                          2,365,000                   7,390                   www.episcopalchurch.org/
Evangelical Free Church of America                          243,000                   1,224                   www.efca.org/explore
Evangelical Lutheran Church in America                 5,178,000                10,862                   www.elca.org/
Evangelical Presbyterian Church                                   61,000                      187                   www.epc.org/
Full Gospel Fellowship                                                275,000                      896                   www.fullgospelbaptist.org
General Association of General Baptists                      72,000                      790                  www.generalbaptist.com/
General Assn of General Baptists                               102,000                   1,415                   www.generalbaptist.com
Grace Gospel Fellowship                                              60,000                      128                  www.gracefellowshipmi.com
Greek Orthodox Archdiose of NA                           2,000,000                     523                  www.goarch.org
Independent Fundamental Churches                              62,000                     659                  www.ifca.org
Intern'tl Church of the Foursquare Gospel                    238,000                  1,851                 www.foursquare.org
Intern'tl Council of Community Churches                      250,000                     150                 www.icccusa.com/
International Pentecostal Holiness Group                      177,000                  1,716                 www.iphc.org/
Jehovah’s Witnesses                                                   1,200,000               13,309                 www.jw.org/en/
Lutheran Church Missouri Synod                               2,600,000                  6,218                 www.lcms.org/
Mennonite Church, USA                                                114,000                     943                 www.mennoniteusa.org/
Metropolitan Community Church                                    43,000                     300                www.mccchurch.org
Moravian Church Northern Province                               21,000                       93                www.moravian.org/
Moravian Church Southern Province                                                                                       www.mcsp.org/
National Assn of Congregational Churches                    67,000                     416                 www.naccc.org/
National Association of Free Will Baptists                     210,000                 2,297                www.nafwb.org/
National Baptist Convention of America                   3,500,000                 2,500                www.nbcainc.com/
National Baptist Convention, USA Inc                       8,200,000               33,000               www.nationalbaptist.com/
Nat'l Mission Baptist Convention                               2,500,000
North America Baptist Conference                                                                                         www.nabconference.org/
Old Order Amish Church                                                 81,000                     898
Orthodox Church in America                                          28,000                     625                www.oca.org/
Pentecostal Assemblies of the World                         1,500,000                  1,750               www.pawinc.org/
Pentecostal Church of God                                           104,000                  1,237               www.pcg.org/
Plymouth Brethren Missionary Church                       1,150,000                     100               www.theplymouthbrethren.org/
Presbyterian Church in America                                   280,000                   1,340              www.pcanet.org/
Presbyterian Church USA                                          3,575,000                 11,260              www.pcusa.org/
Progressive National Baptist Convention                  2,500,000                  2,000              www.pnbc.org/
Reformed Church in America                                        296,000                     902              www.rca.org/
Religious Society of Friends                                          400,000                                          www.fgcquaker.org/
Romanian Orthodox Episcopate                                     65,000                       37              www.roea.org
Salvation Army                                                               471,000                 1,388              www.salvationarmyusa.org
Serbian Orthodox                                                            67,000                       68              www.serborth.org/
Seventh Day Adventist Church                                      840,000                 4,405              www.adventist.org/
Southern Baptist Convention                                   16,500,000                40,870              www.sbc.net/
Swedenborgian Church
U.S. Conference of Mennonite Brethren                         82,000                    368               www.usmb.org/
United Church of Christ                                              1,421,000                  6,017               www.ucc.org/
United Methodist Church                                          8,400,000                36,170
Wesleyan Church                                                          120,000                 1,590
Wisconsin Evangelical Lutheran Synod                         411,000                  1,240
Lakewood Church                                                           43,000                       1
Second Baptist                                                                23,659                       1
North Point Community Church                                      22,557                        1
Willow Creek Community Church                                  22,500                        1
Lifechurch.tv                                                                    20,828                        1
West Angeles Cathedral                                                20,000                        1
Fellowship Church                                                          20,000                        1
Saddleback Church                                                       20,000                        1
Calvary Chapel                                                             18,000                         1
The Potter's House                                                          17,000                         1
Woodlands Church                                                       16,000                         1
Southeast Christian Church                                           16,000                         1
Hopewell Missionary Baptist                                        16,000                         1
New Birth Missionary Baptist                                        15,000                        1
Northridge                                                                     15,000                        1                 www.northridgechurch.com/
Union of Reformed Judaism                                     2,000,000                    859                 www.urj.org/
United Synagogue Conservative Judaism                1,750,000                    853                 www.uscj.org/
Orthodox Union (Jewish)

Muslims:  There are approximately 3 million Muslims in the United States and about 50 national organizations that represent certain sectors.  http://www.uscmo.org/https://en.wikipedia.org/wiki/Category:Islamic_organizations_based_in_the_United_States

Buddhist:   300,000
Hindu:        1,500,000
Sikh:           300,000

Veterans Organizations

The following link provided by the U.S. Department of Veteran Affairs lists over 100 Veteran organizations and their contact information.  http://va.gov/VSO/VSO-Directory_2013-2014.pdf

Commercial Healthcare Insurers

The 25 healthcare organizations list below insure 75% of Americans with nongovernmental insurance plans.  Though we have had little success in getting them to cooperate I felt that they should be listed as many of them have worked with us by sponsoring medical symposia and other educational projects.  They are listed as to size.

  1. United Healthcare Group
  2. Kaiser Foundation Group
  3. WellPoint Group
  4. Aetna Group
  5. Humana Group
  6. HCSC Group
  7. CIGNA Health Group
  8. Highmark Group
  9. Blue Shield of California Group
  10. Independence Blue Cross Group
  11. Centene Corp Group
  12. HIP Insurance Group
  13. BCBS of New Jersey Group
  14. BCBS of Michigan Group
  15. Guidewell Mutual Holdings Group
  16. California Physicians Service
  17. Wellcare Group
  18. Carefirst Inc. Group
  19. Health Net of California Inc.
  20. Molina Healthcare Group
  21. UHC of California
  22. Lifetime Healthcare Group
  23. BCBS of Massachusetts Group
  24. Metropolitan Group
  25. Cambia Health Solutions Inc.

WHY I GAVE MY KIDNEY TO A STRANGER

Civic Life

WHY I GAVE MY KIDNEY TO A STRANGER

by KAREN ZUERCHER

Nov 26, 2013 at 10pm

By Karen Zuercher

The email wasn’t a guilt trip, despite the subject line: “Support us in saving the life of a young congregant.”

The message, which asked me to be tested as a kidney donor to a person I didn’t know, came from the temple where my family belongs. Let me say up front, before you decide that I’m some super-religious do-gooder, that I’m not especially Jewy. I’m proud of my religion, but not much of a traditionalist. I really love bacon.

The plea told the story of Simon, then 18, who’d had his first kidney transplant (from his mom) at age 9. A virus had damaged that kidney and it was no longer working well enough for the long term. Simon’s family had been looking for a new donor match for a year. My first thought was: What a crappy thing for a kid to go through. My second thought was: I could do that.

I forwarded the email to my husband.

“May I offer to be tested? We can discuss later if need be.” 

“Of course,” he answered. Yes, that’s all he said. He has a warm heart, and he’s not easily freaked out.

This was on March 12. Three months later, Simon and I had surgery at UCSF.

Lots of people read the same email, including my doctor and my favorite server at our neighborhood café. (Our temple serves over 2,100 households in San Francisco.) Why had I acted on it? Why would a 44-year-old happily married mother of two with a full-time job put her life at risk for a stranger?

The answer starts with a little geeking out.

Once I’d offered to be tested as a match, Simon’s dad sent me a medical-history questionnaire, some hospital brochures explaining kidney donation, and a 23-minute video called The Gift of Life.

My husband and I watched and read and did research of our own. We came to the same conclusion: Even though this was major surgery that would have a huge impact on Simon’s life, it wouldn’t be that hard for me.

First, I’m not squeamish about medical stuff. I give blood regularly. I can pee in a cup. Hell, I’ve had two babies. And the donor surgery is arthroscopic, meaning no cutting through muscle to get the kidney out. Finally, I’d be in the hospital for only a few days, on full leave for a week, then work from home for a month. 

Long term, my prognosis was 100 percent recovery. I couldn’t take Advil ever again, but otherwise being a donor wouldn’t shorten my life, make me prone to kidney disease, or prevent me from drinking. (Give up bourbon at girls’ night out? I think not.) If by an unlikely twist of fate I needed a kidney donation myself someday, I’d go to the top of the list. 

But really, why did I say yes?

The simple answer is: because I could.

The selfish answer is: because I would want someone to do it for my kid.

The Jewish answer is: because it’s a mitzvah, not just a good deed but also a moral commandment.

The true answer is: because we don’t get many chances to do something really meaningful in our lives.

It’s like when you hear those stories about people who stop on the freeway to yank a crash victim out of a burning car, jump onto a subway track to pull someone off, or catch a baby falling from a third-floor window – and you wonder what you’d do if you were faced with that choice.

I didn’t want to wait and find out the worst about myself. Here was an opportunity.

That said, I do not, for one second, consider myself a hero. What I did is on the continuum of good deeds I see my friends, family, and coworkers doing all the time. They take meals to new parents and to friends who’ve had surgery; foster and adopt children; run to fund charities; and donate their time, money, and talents to myriad causes. Which is the best good act? The one that actually takes place.

A lot happened in the three months between filling out the questionnaire and waking up from surgery.

The hospital gave me a series of tests, mostly medical. I had to collect my urine in a big red rubber container for 24 hours. “Going somewhere?” a work colleague asked when he saw me waiting outside the office bathroom with my backpack. I told him he didn’t want to know.

I had a chest X-ray, a CT scan, an ultrasound, an EKG, a gazillion blood draws, and more. In fact, the biggest hassle was making the time to get those tests done – once, while I was with my family at Disneyland. Still, the tests confirm whether you’re healthy enough to withstand the surgery, live with one kidney, and offer a clean organ. I knew there were other volunteers being tested, but I never knew how many or where I was in the queue. I only knew when I passed.

The doctors also wanted to know if I was crazy enough to donate but not too crazy to survive the procedure, so there were psychological tests as well. I met with a social worker, who asked what I expected from the recipient and his family. I told her I only wanted to hear how Simon was doing. “What if they want to be your best friends?” she said. I laughed. I’m no slouch at saying no, I told her. Just ask my kids.

I also met with a psychiatrist, who asked whether I was doing this for my parents’ approval. I told her my mom didn’t entirely approve – or rather, that she was scared. “What if she tells you not to go through with it?” the doc asked. I explained that my husband and children were the only ones who could put a stop to the process. If they said no at any point, I’d be done. They never did. I’m not sure why.

Along the way I told the rest of my family, my friends, and my coworkers. Their reactions ran the gamut from grossed out to grateful.

One colleague grimaced as if I’d just described a decapitation. Another cried and told me she loved me. Many told me about their own or their loved ones’ struggles with kidney disease. 

The night before surgery, I asked my eight-year-old son if he had any questions. I’d been open with him and his little sister about what I was doing. “Could you get really hurt doing this?” he asked. I told him yes, but this hospital is very good at what they do. He looked stricken. “Could you die doing this?” I took a deep breath. “Yes,” I said, “but of all the people who’ve done this at this hospital over the years, no one has ever died.” I asked him to believe that I wouldn’t be the first. Then I left his room and cried – not for my own fear, but for his. 

I went to the hospital on Friday morning. I went home on Monday at noon. Simon and I had adjoining operating rooms, but we recovered on different floors. We never saw each other. I am what’s called an “altruistic donor,” one who doesn’t know her recipient. At least, I didn’t then.

I met the new owner of my kidney a month after surgery.

Simon’s family and mine got together and talked about school and work and life. It was a regular, friendly conversation, remarkably unweird considering that the kid next to me with the shaggy dark hair and the thousand-watt smile had a part of my body inside him.

Simon’s mom gave me a cloisonné pin of a kidney. “Now you’re part of the O.K. Club,” she told me. “One kidney.” Simon perked up. “I’m not a member anymore!” He still had his mom’s kidney and now, mine.

Today my recovery is pretty much complete. I have five fading scars: four tiny ones where the surgeon inserted the instruments and a four-inch one just above my bikini line (not that I ever wear a bikini) where he took my left kidney out. I don’t have any pain or take any medications. Only one friend has asked to see my scars, and she has lots of tattoos, so I wasn’t surprised.

Simon, meanwhile, is finishing high school – taking calculus and honors physics, no less – and applying to colleges. He has had setbacks, including five days in the hospital, but those are to be expected when you take immunosuppressive drugs. (He’ll take them for the rest of his life, because the body never stops trying to reject the foreign organ.)

Am I different today because of this act? Yes and no.

I’m not a better person. I still swear at other cars when I drive, yell at my children, make snide judgments about strangers, and eat bacon. But I’m more satisfied on a fundamental level.

When we met, Simon gave me a letter. “Read this when you get home,”  he said, waving it in my face like a warning. I won’t quote it out of respect for his privacy, but I will say that it’s remarkably eloquent for a teenage boy. I like to imagine that the little piece of me in him is whispering suggestions and encouragement, telling him how proud I am.

http://thebolditalic.herokuapp.com/articles/3971-why-i-gave-my-kidney-to-a-stranger