Entering its 51st year, the American Kidney Fund has made it its mission to help all patients affected by chronic kidney disease (CKD), which is the fastest-growing noncontagious disease in the United States: from those at risk for chronic kidney disease through patients requiring dialysis and/or transplant. First and foremost is uncovering the primary cause of their kidney failure. Unfortunately, for 14% of low-income patients, the origins of their CKD remain a medical mystery.

In December of 2020, the American Kidney Fund convened the Unknown Causes of Kidney Disease Summit, bringing together government agencies, industry, patients, researchers, and rare disease organizations, hoping that by helping underserved patients get to the root cause of their kidney disease, they could also help solve this mystery for a broader patient population. From this, a roadmap was born for what would become the Unknown Causes of Kidney Disease Project, launched in mid-2021, with goals that include advocating for equitable kidney disease care, educating and empowering patients through culturally competent information, and overcoming financial and communication barriers to treatment.

On this episode of Managed Care Cast, we speak with Mike Spigler, vice president of patient support and education for the American Kidney Fund, who is spearheading the Unknown Causes of Kidney Disease Project. He addresses why patients are the key to all the American Kidney Fund hopes to accomplish, using the organization’s voice to address rare kidney diseases, and emphasizing the necessity of policy change for care coverage support, including for genetic testing.