Despite skyrocketing incidence of kidney disease and kidney failure, government investment remains inadequate

May 14, 2018

Published by The Hill

It stands to reason that with the enormous improvements in health care technology, diagnostics and drug therapies over the past several decades, Americans should be much better off – and healthier – than they were just 25 years ago. But even as health outcomes have improved overall, our nation is rapidly losing ground to an urgent public health crisis that – contrary to all reason – seems to fall low on the national priority list for crucial investment in innovation to drive better health outcomes and lower the financial burden on the healthcare system and patients.

The Global Burden of Disease Study, published last month by the Journal of the American Medical Association, evaluated the state of U.S. health between 1990 and 2016 – and makes frighteningly clear that Chronic Kidney Disease (CKD) is exacting a greater and increasing toll on American lives. CKD ranks 7th as a risk factor for death and ‘disability adjusted life years.’ And since 1990, CKD due to diabetes has climbed from 35th to now the 16th leading cause of death and ‘years of life lost due to premature mortality.’ It’s a silent epidemic that’s exploded in 25 years, second only to opioid use disorders.

Unchecked and unaddressed, CKD can progress to irreversible kidney failure and the need for an organ transplant or lifelong dialysis. Sadly, the nation faces an organ shortage exacerbated by the rise in prevalence of CKD and kidney failure, resulting in 13 Americans dying every day waiting for a kidney transplant. With more than 100,000 Americans currently on the transplant waitlist, most patients receive dialysis as their primary therapy

This has tremendous economic and societal implications. Accoring to the United States Renal Data Source (USRDS), the earlier stages of CKD cost Medicare nearly $64 billion in 2015, while the most severe stage – End Stage Renal Disease – cost more than $34 billion.

The kidney care community has had a front-row seat to the staggering growth of CKD, and we’ve been working hard to address it. Together, and with policymakers, we’ve advanced initiatives to improve quality outcomes and dramatically improve patient survival rates following kidney failure when patients transition to dialysis care or receive a kidney transplant to continue living. In fact, according to the United States Renal Data System (USRDS) 2017 report, overall mortality rates among ESRD (dialysis and transplant) patients have consistently declined over the last 15 years, down close to 30 percent between 2001 and 2015, the most recent year for which data are available. Specifically, the net reductions in mortality from 2001 to 2015 were 27 percent for hemodialysis patients and 41 percent for peritoneal dialysis patients.

But even with the community’s collective efforts and significant progress in critical areas such as quality and patient survivability following kidney failure, our national response in the areas of investment in research and innovations has remained sadly unremarkable and uncoordinated. Innovation has been stifled and critical investment has lagged. Resources being put toward CKD are not proportional to the problem. We are still far from where we need to be.

For instance, Medicare spends billions of dollars each year caring for kidney disease patients, but less than 2 percent of the National Institutes of Health (NIH) budget is spent on kidney disease research to improve care. In fact, despite the more than 30 million Americans living with CKD today, NIH invests only $13.94 per patient for CKD research, compared to $2,500 per patient for HIV/AIDS research, and approximately $400 per patient for cancer studies.

If we are to have even the slightest chance of slowing or reversing CKD’s burden of disease over the next 25 years, it’s imperative that we re-energize innovation and start taking steps to more fully understand and address the many factors that contribute to CKD – and improve care for the Americans it affects.

For our part, the broader kidney community — including¬†patient groups, physician and nursing organizations,¬†dialysis providers, and manufacturers – are committed to “doubling down” and doing just that. We feel confident that, working together with policymakers, we have a chance at real success. The Chronic Kidney Disease Improvement in Research and Treatment Act (H.R. 2644) contains important elements that would enhance and expand current CKD research efforts and evaluate barriers to care – including initiatives that would involve not only the Department of Health and Human Services (HHS), but the National Academy of Sciences and the Government Accountability Office.

A dovetailing public-private partnership between HHS and the American Society of Nephrology – the Kidney Innovation Accelerator (KidneyX) – puts additional muscle right where it needs to be. The program will seed, incentivize and accelerate breakthroughs in kidney care by providing merit-based, non-dilutive funding to promising innovators through a series of prize competitions; and establish better coordination among HHS, NIH, the Food and Drug Administration, and the Centers for Medicaid & Medicare Services to break down barriers to innovation.

A public health epidemic the size of CKD – now affecting 17 percent of Americans – deserves an appropriate response. Twenty five years from now, our success will be a testament to how combined resources, dedicated stakeholders, and committed policymakers can stem a health crisis while also actively improving the lives of patients it already affects.

Kidney Care Partners (KCP) is the nation’s largest kidney care coalition dedicated to working together to improve quality of care for individuals with Chronic Kidney Disease (CKD) and End-Stage Renal Disease (ESRD).To learn more about KCP, please visit