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Addressing the Organ Donor Crisis

Donna Cryer, Jennifer Erickson, Crystal Gadegbeku, Greg Segal, and Abe Sutton

Summary 

The organ-donation crisis is one of the most persistent, expensive, and yet solvable public-health challenges of our time. As of January 2020, nearly 115,000 Americans were waitlisted for an organ transplant.  The vast majority have kidney failure, which, as one of the rare conditions qualifying patients for Medicare, imposes billions of dollars of costs on taxpayers. In 2016 alone, taxpayers spent an alarming $113 billion on kidney disease—more than the entire budgets of the National Institutes of Health ($39 billion), the Department of Homeland Security ($44 billion), and the National Aeronautics and Space Administration (NASA, $21.5 billion) combined. The clear solution is to shorten the organ waiting list. For every Medicare patient who receives a kidney transplant, taxpayers save $250,000 in avoided dialysis costs.  This proposal presents a discrete set of actions for the federal government to take to quickly and decisively to address the organ-donation crisis.

About the Authors

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Donna R. Cryer, JD, has channeled her personal experience as an IBD and liver transplant patient into professional advocacy as founder of CryerHealth, LLC consulting firm on patient-industry partnerships; the Global Liver Institute, a patient-driven advocacy non-profit operating in the US and Europe; and now as Interim Executive Director of the People-Centered Research Foundation, the Central Office for PCORnet. Mrs. Cryer serves on the Executive Committees for the Clinical Trials Transformation Initiative (CTTI) and the People-Centered Research Foundation, the Board of Trustees of Sibley Memorial Hospital/Johns Hopkins Medicine and the Executive Advisory Board for Tivity Health (NASDAQ: TVTY). She is a frequent speaker on patient engagement with health information technology and research at meetings of BIO, PhRMA, AHIP, National Quality Forum, mHealth Summit, Digital Health Summit, and the National Academies of Medicine. Mrs. Cryer received an undergraduate degree from Harvard/Radcliffe Colleges and a Juris Doctorate from the Georgetown University Law Center.

Jennifer Erickson works on advancing innovation policy in the public interest, supported by Arnold Ventures and Schmidt Futures. Previously, she served in the Obama Administration as Associate Director of Innovation for Growth in the White House Office of Science and Technology Policy. Erickson also served as Director of Competitiveness and Economic Growth at the Center for American Progress and as Special Adviser to the First Minister of Scotland. She started her career at Bain and Company, and holds an undergraduate degree from the University of Virginia and a Masters in Policy from the University of Edinburgh.

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Crystal A. Gadegbeku, MD, FASN, is Professor of Medicine and Section Chief of Nephrology, Hypertension and Kidney Transplantation at the Lewis Katz School of Medicine at Temple University. She is also Vice Chair of Community Outreach for the Department of Medicine and a Medical Director of the FMC Episcopal Hospital Dialysis Unit. A graduate of the University of Virginia School of Medicine, Dr. Gadegbeku also completed her internal medicine residency and nephrology fellowship at the University of Virginia Hospital, and she has held board certifications in both disciplines. Dr. Gadegbeku currently serves on the American Society of Nephrology (ASN) Council, ASN's governing board, and previously served as Chair for the ASN Policy and Advocacy Committee, where she played instrumental roles in the growth of diversity initiatives in ASN, the launch of KidneyX, and ASN's response to the American Advancing Kidney Health Executive Order. Recently, she has been invited to participate in the NIDDK Strategic Plan as part of an NIH-wide initiative under the 21st Century Cures Act. Her clinical interests include management of resistant hypertension, hypertension in pregnancy, and progressive chronic kidney disease.

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Greg Segal is the co-founder and CEO of Organize, a patient advocacy group focused on systemic reforms to increase patient access to organ transplants. Organize served as the Innovator in Residence in the Office of the Secretary of the U.S. Department of Health and Human Services from 2015-2016. During this time, Segal led research in partnership with the University of Pennsylvania and the Bridgespan Group which was cited by President Trump during the signing of the July 2019 Executive Order on Advancing American Kidney Health. Segal won the 2015 Stanford MedX Health Care Design Award and a 2016 Tribeca Disruptive Innovator Award. Prior to co-founding Organize, Segal worked in venture capital at Rethink Education. He received a B.A. from Duke University and is currently a Columbia Business School Innovation Fellow. 

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Abe Sutton is currently a student at Harvard Law School. He previously focused on health policy at the White House and served as Secretary Azar's Advisor for Value-Based Reform at the U.S. Department of Health and Human Services. Sutton was a consultant with McKinsey & Company where he worked with clients in the healthcare sector and holds a degree in healthcare management and policy from the Wharton School at the University of Pennsylvania. He has been named to Forbes 30 under 30 for Law and Policy.

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