Chronic and rare kidney diseases pose a significant and growing challenge to public health in the U.S. Despite advancements in the field of medicine, kidney patients face an uphill battle plagued by delayed diagnosis, limited treatment options, and significant health inequities. As a nephrologist, I witness firsthand the struggles that patients and their families endure. But recently, I have also witnessed breakthroughs in how we understand and treat kidney disease effectively. It is imperative that Congress take urgent action to recognize this moment and chart a new era in how to treat and manage rare kidney disease – and it starts with the New Era of Preventing End-Stage Kidney Disease Act.
Chronic kidney disease (CKD) affects an estimated 37 million adults in the U.S. today. Up to a staggering 90% of those individuals are unaware of their CKD, often not diagnosed until significant kidney damage has already occurred. Equally concerning are the roughly 150 rare kidney diseases (RKD) that collectively impact hundreds of thousands of Americans.
The human cost of both CKD and RKD is troubling. Patients face exhausting treatments with numerous side effects, dietary restrictions, and complex medication regimens. Many patients struggle with depression, anxiety, and a diminished quality of life from both the disease itself and the side effects of treatments. The financial burden is equally significant, with Medicare spending over $124 billion annually on kidney disease care. Although roughly 1% of Medicare beneficiaries have kidney failure, expenditure to treat kidney failure accounts for over 6% of the Medicare budget.
Many rare kidney diseases strike children and young adults. Diagnosis is often delayed due to high rates of unawareness, leading to irreversible kidney damage and lifelong dependence on dialysis or transplantation for survival. The unfortunate truth is that while many cases of end-stage kidney disease (ESKD) are preventable, rare kidney diseases often lack treatment options altogether. RKD patients face the physical burden of their disease as well as the isolation of living with a condition that few understand. I’ve heard the stories of countless children with RKD who experience mental health challenges as they try to keep up with the ‘normal’ lives of their classmates and friends.
From treating dialysis patients in prisons to managing patients in clinic to keep them off dialysis, I see the urgent need for a new standard in kidney care. The historical lack of innovation in diagnosis and treatment options for kidney care has been unacceptable. Sadly, our current healthcare system fails both groups—diagnosing chronic kidney disease too late and struggling to recognize and manage rare kidney diseases effectively.
These challenges are particularly acute in underserved communities. The prevalence CKD is highest among non-Hispanic Black adults (16% of total), followed by Hispanic adults (14%). Black people are nearly four times more likely to develop ESKD compared to White people, while Hispanic and Native American people face over twice the risk. These disparities often stem from limited healthcare access, an understandable distrust of medical institutions, and genetic predispositions.
A significant obstacle in kidney care is the shortage of nephrologists. Patients often struggle to find a specialist who can effectively treat their condition, with some patients living hours away from the nearest one. This shortage has partly contributed to the relatively lower clinical trial activity and thus few drug approvals in kidney care (especially compared to oncology). Fortunately, over the past five years clinical trials for treatments targeting some of the well-known rare kidney diseases have surged tenfold. Yet there is still much room for improvement, including the need for comprehensive federal policies that address gaps in diagnosis and treatment options.
The New Era of Preventing End-Stage Kidney Disease Act (H.R. 6790) – or New Era Act – could transform care for those affected by rare kidney disease through early diagnosis, equitable care, research, education, and patient empowerment. Championed by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL), the bipartisan legislation recognizes the urgency to reduce the human and economic impact of rare kidney diseases.
The New Era Act directs the Department of Health and Human Services (HHS) to assess general access to kidney care but also addresses disparities by promoting genetic testing for APOL1 mediated kidney disease that uniquely affects people with African ancestry. The legislation would also establish regional kidney disease research centers at the National Institutes of Health (NIH) to accelerate treatment breakthroughs, cultivate a stronger nephrology workforce through fellowships and training, and launch public information and awareness campaigns to promote early detection and support for those affected by kidney diseases.
As a nephrologist, I strongly urge Congress to support the New Era Act. This legislation offers hope to millions of Americans at risk of or living with chronic and rare kidney diseases. Together, we can usher in a new era of hope and healing for kidney patients across the nation.
Barbara S. Gillespie, MD, MMD, FASN, is a member of the Board of Directors of NephCure, a nonprofit organization dedicated to accelerating research, improving treatment, and finding a cure for rare, protein-spilling kidney diseases like IgAN, FSGS, and Membranous Nephropathy. Dr. Gillespie is a board-certified nephrologist, Vice President and Therapeutic Head of Nephrology at Fortrea, and an Adjunct Professor in the Division of Nephrology and Hypertension at the University of North Carolina (UNC).
