I am an Associate Professor of Surgery and Population Health at the NYU Grossman School of Medicine, and the Director of the Center for Surgical and Transplant Applied Research Qualitative Core at the NYU Langone Transplant Institute.
I have authored 120+ publications in top medical and scientific journals, and my team is comprised of renowned world experts with millions in NIH research funding.
While tenure-track faculty at Johns Hopkins, I served as the Director of Policy and External Affairs for our $100M grant-funded transplant research enterprise, which we grew to be the largest and most prolific in the world.
My experience and expertise includes governance at the federal level, where I served as an elected Director of the national transplant system U.S. Organ Procurement and Transplantation Network under the U.S. Department of Health and Human Services. I also was elected to the Executive Committee, and the Nominating Committee, and have served multiple organ specific committees and policy workgroups including Data Advisory, Kidney, Living Donor, and Patient Affairs, and was Vice President of Patient and Donor Affairs.
Our research impacts decision making about national organ allocation and transplant system performance, and calls for transparency and accountability with federal transplant policy. We find evidence based ways to support patients and donor families, work with hospital leadership, community groups, and national professional societies to develop and evaluate new programs and policies to reduce disparities.
Our team’s science is law and life changing. We've figured out how to help people living with HIV get kidney transplants, wounded warriors to have life-changing hand and face transplants, and people who donate a kidney or liver get the best care after saving a life. We work with organ donor families in their grief journey and how to talk about new types of donation and transplant realities (like xenotransplantation) to patients, and the American public.
I find great joy in mentoring young people in STEM and focus on helping them elevate their strengths and understand weaknesses to become their best selves driven by purpose. I teach in the MHA program at Purdue University, and remain adjunct faculty at Johns Hopkins.
I am a former fellow of the Maryland New Leaders Council that recruits, trains and promotes young leaders ranging from elected officials and civically engaged leaders in business, and industry. I also serve on the Mass Media Committee for the National Physical Activity Plan.
The longest-living human with a xenograft: A qualitative narrative inquiry
Macey L. Levan1,2, Towana Looney2, Rhiannon D. Reed1,2, Carolyn Sidoti1,2, Brendan Parent1,2, Ian Jaffe1,2, Tal Eitan1,2, Aprajita Mattoo1,2, Karen Khalil1,2, Elaina Weldon1,2, Imad Aljabban1,2, Jeffrey Stern1,2, Vasishta Tatapudi1,2, Adam Griesemer1,2, Dorry L. Segev1,2, Robert Montgomery1,2, Jayme Locke1,2,3.
1Surgery, NYU Grossman School of Medicine, New York, NY, United States; 2Transplant Institute, NYU Langone Health, New York, NY, United States; 3United Therapeutics , Research Triangle Park, NC, United States
Introduction: Creating an unlimited supply of organs through xenotransplantation (XTx) with gene edited pig kidneys could obviate the waitlist, and the experience of the first humans is vital to developing comprehensive informed consent and patient-centered outcome metrics. The objective of this study is to document the narrative experience of a prior living kidney donor and the longest-living human to receive a pig kidney transplant.
Methods: This study employed a qualitative single-case narrative inquiry to explore lived experience with a pig kidney transplant through in-depth, semi-structured interviews. Data collection consisted of 3 interviews with the same recipient conducted in-person, each lasting approximately 1 hour in duration. The interview guide included open-ended questions designed to elicit the participant’s lived experiences, perceptions, and insights regarding the experience of XTx, including perceived quality of communication, care, and quality of life. Interviews were audio-recorded and transcribed verbatim. Approval was obtained from the IRB, and the patient provided informed consent before participation.
Results: Overall, the patient perceived that living with the XTx for 130 days was successful, even after graft rejection and explant. At 14 days post-surgery, the patient stated, “The xenotransplant has saved my life, has given me a second chance on life. The experience has been remarkable.” Three days post-removal of the xenograft, the patient continued to express her gratitude for the transplant and the opportunity for the field to learn from the experience, sharing, “I feel like the education shouldn't stop just because we had a let-down, but I don't want to say failure. I wanna say let-down because you know, we can go back and learn from the failure and replace the let-down.” The participant noted that their care team clearly explained the risks, benefits, and alternatives to receiving a xenotransplant prior to surgery and maintained a similar level of communication while they monitored her for evidence of rejection: “When I know you're gonna know and we'll know together, we'll learn together." When discussing quality of life, the patient noted improvements in their psychological, social, and functional wellbeing post-transplant, including a level of energy she had not previously experienced. Unfortunately, that surge of energy ceased with the explant, but the patient remained positive about her own future and other patients considering XTx, stating “I see it as the future. It's the only future to me. For people like me.”
Conclusion: The unique experience of being the longest living person with a pig kidney can be used to support the development of comprehensive informed consent and patient-oriented metrics for quality of life as we move into clinical trials for XTx.
[1] patient experience
[2] qualitative research
[3] quality of life
[4] ethics
[5] informed consent