A kidney disease moonshot is long overdue

Today in the United States, nearly 37 million adults are living with chronic kidney disease (CKD) and more than 700,000 are living with end-stage renal disease (ESRD), or kidney failure, which includes transplants. An estimated 124,000 new cases of kidney failure are diagnosed every year, and nearly half a million Americans have to depend on dialysis, a grueling regimen of treatments several times a week for several hours at a time. In addition, about 100,000 of the individuals living with kidney failure in the U.S. are awaiting transplant. The current waiting list for a kidney transplant is three to five years.

These figures are already high, and sadly, the population of individuals with kidney disease continues to grow. There are no easy answers or quick fixes. While we have seen measurable progress in key areas such as patient survivability and reduced hospital admissions among the sickest patients, more must be done. Truly making a difference for future generations means recognizing and addressing our nation’s significant kidney health problem to ensure individuals understand the importance of kidney health long before diagnosis.

What we need is a new “moonshot” for kidney care — that mirrors previous initiatives to tackle cancer. We need the collective energy, focus, incentives, and resources of both government and stakeholders — to bring diagnosis, treatment, access, choice, and delivery of quality kidney care into the 21st century. This will by far be our biggest challenge to date: transforming the current system so that it remains viable and encourages innovation in order to help both current and future generations of Americans.

I believe such a transformation is possible thanks to today’s historic alignment of the broader kidney care community, bipartisan members of Congress, and the administration. This alignment is historic and holds great promise.

The broader kidney community took a bold step when it released Kidney Care FIRST: A Framework for Improving Renal Disease Support & Treatment in June 2019. This framework offers a renewed vision of critical policy priorities and strategies to address the full spectrum of the disease cycle: prevention and awareness; keeping people with a CKD diagnosis healthy; preventing or slowing the progression of the disease; addressing comorbidities such as diabetes, hypertension, and cardiovascular disease; preparing for ESRD, including access to transplant; and, home therapy or active medical management. Fortunately, these priorities align with what we are seeing in Congress and the administration. 

The current administration made significant progress last year when it issued a new executive order system, a reevaluation of current ESRD payment policies, and a promise to expand evidence- that sets ambitious goals for the improvement of kidney care, including a new public awareness campaign to educate Americans about CKD, reforms to the organ procurement and management based approaches to kidney disease prevention. The kidney community welcomes this initiative and looks forward to working with the administration to further improve patient outcomes, care and choice.

But true progress will not happen unless there is strong commitment from both ends of Pennsylvania Avenue. Bipartisan, bicameral legislation to modernize Medicare’s ESRD Benefit in a way that can make a lasting difference for people with kidney disease in this country is a critical next step. The Chronic Kidney Disease Improvement in Research and Treatment Act (S. 1676 and H.R. 3912) aims to support improvements in the research and treatment of CKD by empowering patients with increased awareness, expanded preventative services, and improved care coordination through greater accuracy and transparency of quality programs. I am encouraged by the promise of these efforts and urge lawmakers to swiftly take action on this issue.

Meanwhile, a truly remarkable partnership between the public and private sectors is underway to improve the value of kidney care. The KidneyX initiative, which started in 2018 as a joint public-private partnership between the Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN) has committed to investing a total of $25 million over the next five years to incentivize the development of next-generation dialysis treatments and care delivery methods, and Congress approved $5 million last year. The National Kidney Foundation is also launching a national disease awareness campaign, but more resources are needed to incentivize and innovate.

The kidney programs and policies we are seeing from Congress, the administration, and the broader kidney community are both exciting and optimistic, but this momentum must continue in private-public partnership to be successful. While each of these efforts and initiatives addresses a small piece of the kidney care puzzle, we need them to all work together to ensure lasting promise for the future.

By working together toward with this common goal, it is possible to achieve changes that are long overdue. Thirty-seven million Americans should not have to wait. This our time. We need a kidney care moonshot.

John P. Butler is the chair of Kidney Care Partners and president and Chief Executive Officer of Akebia Therapeutics, Inc.