In a recent session with the Kindness for Kidneys Support Group, hosted by the APOL1 Action Alliance, Coalition leader Dr. Dale Lupu and ExPAND Study Site Coach Kelly Shipley joined over 25 patients and advocates to listen directly to their lived experiences with kidney failure and care options. Patients shared their personal journeys and highlighted a critical theme: patients must be empowered to understand and choose the pathway that best fits their lives.
A primary focus of the discussion was expanding the recognized list of care options to include Active Medical Care without Dialysis as a legitimate, non-dialytic pathway for patients with kidney disease. Aligned with recent American Society of Nephrology guidance, Active Medical Care without Dialysis is a dedicated, highly intentional effort by both patients and clinical teams to optimize quality of life, manage symptoms, and align treatment plans with personal goals.
While traditionally referred to by terms like “Conservative Management”, Active Medical Care without Dialysis is not passive care. Patient advisors have been strong supporters of the “active” terminology, preferring it to terms that may convey clinical caution or reluctance to act.
In the ExPAND Study, led by Dr. Lupu, nephrology clinics across the United States are implementing an ACTIVE program to help their practices offer and support Active Medical Care without Dialysis.
View Support Group Recording
Learn more about Active Medical Care without Dialysis with our review of the evidence base.