Kidney Health Initiative (KHI)

KHI PFPC Founding Chair Celeste Castillo Lee

It is with great sadness that we announce the passing of Celeste Castillo Lee on Thursday, February 9. Ms. Lee vigorously worked as a patient and care partner advocate and was a strong leader in the field of patient-engagement. KHI wishes to extend our heartfelt condolences and deepest sympathies to the family.

For more than 30 years, Celeste Castillo Lee has lived with kidney failure. She has been on peritoneal dialysis, been on hemodialysis, and had a transplant for 10 years. Celeste was committed to helping health systems, academic health centers, the biotechnology and pharmaceutical industries, and dialysis organizations partner with patients and their families to re-envision the future of health care, Celeste served as a patient advisor, peer mentor and advocate in nonprofit health organizations, government agencies, and research projects both nationally and internationally. As a friendly and familiar face at ASN Kidney Week, the Patient-Centered Outcomes Research Institute and other local and national events, her tireless efforts reverberated across nephrology and the greater medical and patient communities.

Among other leadership roles, Celeste has served as a member of the KHI Board of Directors and Founding Chair of the KHI Patient & Family Partnership Council, as a member of the Phase I National Patient Advisory Council for PCORnet, and as a member of the steering committee for the Vasculitis Patient-Powered Research Network. She was recently awarded a 2017 Medal of Excellence by the American Association of Kidney Patients.

In the fall of 2016, Celeste shared her journey with kidney failure, her path to engagement and advocacy in the kidney community, and her vision for a health care system strengthened by meaningful patient, provider, and staff partnerships. She gave a presentation during Nephrology Grand Rounds at the University of North Carolina School of Medicine, was interviewed by Ronald J. Falk, MD, FASN, and was interviewed by Lori Hartwell at RSNHope. These presentations can be accessed here.

To honor Celeste’s contributions and involvement in patient engagement, ASN is seeking to establish a Celeste Castillo Lee Endowed Lectureship. Held annually during ASN Kidney Week, the lectureship would provide an opportunity to recognize the patient as an integral member of the research and clinical team.

To donate to the Celeste Castillo Lee Endowed Lectureship, please click here. If you have any questions or would like more information on making a donation, please contact Melanie Robey at mrobey@asn-online.org.

If you have any questions about Celeste Castillo Lee, the PFPC or KHI, please do not hesitate to contact KHI staff at khi@asn-online.org.