Celeste Castillo Lee
I am currently the Senior Project Manager in the Office of the Provost at the University of Michigan, and most recently left the position as the chief of staff to the President & CEO, Duke University Health System and the Chancellor for Health Affairs at Duke University where I was active in the Patient and Family Centered Care initiatives.
I made a significant contributions as a speaker, patient advisor, both because of my extensive personal experience with ESRD, Patient and Family Centered Care as well as my commitment to improving quality of care and quality of life for those with ESRD and illness in general. This commitment is demonstrated by my membership in multiple non-profit health organizations and my activities as an advisor and advocate in Michigan, North Carolina, nationally, and internationally. I have been a strategic consultant, and/or served in a leadership capacity with organizations such as the National Kidney Foundation, the National Kidney Foundation of Michigan, Global Fibrosis Foundation, the North Carolina Task Force on Chronic Kidney Disease, the Vasculitis Foundation of North Carolina. I have spoken out on critical issues related to kidney health and outcomes for people with end stage renal disease on dialysis, and am committed to addressing health disparities in the kidney population. I appeared as a patient advocate at the December 8, 2010 Open Public Hearing Session FDA/CDER Joint Cardiovascular and Renal Drugs and Drug Safety and Risk Management Advisory Committee concerning gadolinium based contrast agents and testified at the FDA hearing on the efficacy and usage of erythropoietin stimulating agents (ESAs). I believe I can serve effectively alongside physicians, scientists and policy makers, as demonstrated by service on the advisory committee for the Physicians and Providers Advancing Care Transitions, a joint initiative between the American Colleges of Physicians and the American Board of Internal Medicine Foundation, and by participation in the ABIM Foundation annual Forum as a patient advocate for the past three years.
Speaking, Advisor and Services:
• Board Member, Global Fibrosis Foundation (2011-present)
• Advisory Committee, Physicians and Providers Advancing Care Transitions, American Colleges of Physicians & ABIM (2011)
• Designed and delivered Leadership Development Workshop, NKFM (2011)
• Speaker, OptumHealth Care Solutions Conference (2010)
• www.thewaitinglist.org, Board Member of a web based NGO to promote and encourage organ donation (2009-present)
• Participant in the invite only American Board of Internal Medicine Foundation Forum (2009, 2010 and 2011)
• National Kidney Foundation, Public Policy National Committee Member (2008-present)
• Chair, Executive Committee, Patient and Family Council, National Kidney Foundation (2008-present)
• Advisory Board, Working@Duke, Duke University's Staff & Faculty Monthly publication (2006-2007)
• Governor's Task Force on CKD, State of North Carolina (2006-2008)
• Executive Committee Member, Patient and Family Council, National Kidney Foundation (2006-present)
• Steering Committee, "People Like Us" NKF patient advocacy program (2005-present)
• Patient Representative/Advocate, National Meeting on Facilitating Clinical Research in Dialysis Units, sponsored by the American Society of Nephrology, NKF, NIH/NIDDK
• Panel Member/Patient Advocate: CMS & Dialysis Network Annual Meeting (April 2006)
• Chair, Vasculitis Foundation of NC (2001-2006), planning committee member (2006- present)
• Public Speaker, Carolina Donor Services (2001-present)
• Patient Education/Research Specialist (volunteer), Dana-Farber Cancer Institute (1997-1999)
- Public Speaker and Patient Advocate, New England Organ Bank (1988-1999)
Keynote Speaker, Carolina Donor Services Volunteer Gala, 2009
• Documentary of Celeste Castillo Lee, Short Film, won first place in the 2009 Donate Life Hollywood Film Festival, produced by David Y. Lee
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To see a short video on presenting at FDA:
My journey began ins 1983 with ESRD began at the age of 17 due to an autoimmune disease, Wegener's Granulomatosis. As a college student at Syracuse University, I was on dialysis during the pre-ESA era and struggled with a hemoglobin of 6. Every day required the mental fortitude and commitment needed to train for a marathon. I received a cadaveric transplant in1986, from an amazingly selfless family. On that day, I received a kidney transplant and an opportunity to live a life unencumbered by anemia and dialysis. For the next ten years that I had my transplant (thanks to John Stanley, my given name for the kidney) I danced aerobics at the Skyclub overlooking the Boston Harbor, I ran through the early morning streets of Boston, swam in the freezing beaches off the coast of Massachusetts in late July, ate ripe summer fruits and drank. I did partake in ice cold beer, but as most folks familiar with dialysis would know, any beverage is a truly wonderful thing since we are limited to volume we can drink. I drank liters of water, milk and iced coffee. The pleasure of drinking a simple glass of water was never lost on me. Unfortunately due to chronic kidney rejection, I transitioned back to dialysis in 1995. From 1993 through 1995, as my transplanted kidney was failing, I was transfusion-dependent due to lack of ability to receive ESA therapy. Consequently, I am 100% sensitized with both T cells and B cells, waiting for a second transplant since being placed on the wait list on February 10, 1992 when I was 28 years old.
In September 2010, I began working at the University of Michigan as a Sr. Project Manager, and prior to that I was the Chief of Staff to the President and CEO of Duke University Health System. I have worked full time since graduating from college. I have intimately experienced the health system over the past 30 years and am grateful to still be living and functioning. I have hemodialysis on the early mornings of Monday, Tuesday, Thursday and Saturday. My access to ESA's is a crucial factor for my quality of life and my ability to sustain full time employment.
I choose life every time I undergo dialysis (without dialysis, and because I have no urine output, I would be gone in about three weeks, give or take), and the quality of my life is as important to me as the quantity of my life. Dialysis is not an attractive option for me unless I can continue to lead a life worth living. Why stay around to be an exhausted non-contributing citizen, a cranky wife/step-mom/friend and a drain on my society and my soul? I am not interested.
Needless to say, my policy perspectives and decision-making processes are influenced by my personal experience. Because of that experience I have become an advocate not only for myself but also for those whose voices are silent. I have demonstrated that I can translate and generalize from my personal experiences to those of my fellow patients.
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