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. Author manuscript; available in PMC: 2023 Dec 13.
Published in final edited form as: Am J Kidney Dis. 2021 May 11;78(2):161–167. doi: 10.1053/j.ajkd.2021.04.006

Kidney-Related Research in the United States: A Position Statement From the National Kidney Foundation and the American Society of Nephrology

Ryan Murray 1, Troy Zimmerman 1, Anupam Agarwal 1, Paul M Palevsky 1, Susan Quaggin 1, Sylvia E Rosas 1, Holly Kramer 1
PMCID: PMC10718284  NIHMSID: NIHMS1948513  PMID: 33984405

Abstract

Kidney disease is an important US public health problem because it affects over 37 million Americans, and Medicare expenditures for patients with chronic kidney disease now alone exceed $130 billion annually. Kidney disease is characterized by strong racial, ethnic, and socioeconomic disparities, and reducing kidney disease incidence will positively impact US health disparities. Due to the aging of the US population and an unabated obesity epidemic, the number of patients receiving treatment for kidney failure is anticipated to increase, which will escalate kidney disease health expenditures. The historical and current investment in kidney-related research via the National Institute of Diabetes and Digestive and Kidney Diseases has severely lagged behind ongoing expenditures for kidney disease care. Increasing research investment will identify, develop, and increase implementation of interventions to slow kidney disease progression, reduce incidence of kidney failure, enhance survival, and improve quality of life. This perspective states the urgent reasons why increasing investment in kidney-related research is important for US public health. The National Kidney Foundation and the American Society of Nephrology are working together to advocate for increased funding for the National Institute of Diabetes and Digestive and Kidney Diseases. The long-term goal is to reduce the burden of kidney disease in the US population and improve the quality of life of patients living with kidney disease.

Scope of Problem

An estimated 37 million adult Americans, 15% of the US population, are affected by chronic kidney disease (CKD), and 1 in every 3 US adults will develop CKD.1 Kidney disease can progress to kidney failure and the need for kidney replacement therapy via dialysis or transplantation. Dialysis, the most common kidney replacement therapy, remains one of the most expensive treatments for a chronic disease. As kidney disease progresses, costs increase, with highest expenditures noted for treatment of kidney failure, which exceed $90,000 per year per Medicare dialysis patient.2 Medicare fee-for-service expenditures for patients with CKD (including kidney failure with replacement therapy [KFRT]) now exceed $130 billion annually.3

Many people who live with CKD experience a significant financial burden, precipitated by associated comorbidities, physician visits, and medications.4 Out-of-pocket costs for people with CKD not requiring kidney replacement therapy may be double those for people with cancer or stroke.4 In addition to the high financial costs associated with treatment, there is a clear burden on the patient. Kidney patients face a poor quality of life, with many suffering from physical symptoms (fatigue, muscle cramping, insomnia, etc) and mental symptoms (anxiety, depression, etc).

Due to the high cost but necessity of dialysis, the Social Security Act Section 2991 was amended in 1972 (Public Law 92–603) to ensure that patients with kidney failure, regardless of age or Social Security disability status, would be Medicare-eligible and have access to dialysis. At that time, approximately 10,000 Americans were receiving dialysis.5 Starting in the 1980s, the incidence of KFRT increased rapidly, fueled in part by an obesity epidemic and increasing prevalence of diabetes. From 1990 to 2006, the adjusted incidence of KFRT increased by 60.6% from 256.3 per million population to 411.7 per million.3 Since 2006, the adjusted incidence of KFRT has slowly declined to rates less than 375 per million, but the total number of people with incident KFRT continues to increase due to the growth of the US population and an aging demographic. In 2018, the total number of persons with incident KFRT reached 130,000 for the first time, a 325% increase since 1990.3

Today, approximately 800,000 Americans, including 10,000 children and adolescents, are treated for kidney failure. Without strong public health interventions to curb CKD incidence and its progression to kidney failure, the number of people projected to require kidney replacement therapy in 2030 exceeds 1 million.6 Most adults with kidney failure will never receive a transplant and will remain dependent on dialysis. Five-year survival with dialysis is less than 50%,3 and quality of life is poor.7 A 45-year-old adult initiating dialysis is expected to live an additional 10 years, 22 years fewer than a 45-year-old in the general US population.6 Years of life lost due to kidney failure in a child range between 42 and 53 years depending on age at dialysis initiation.8

Kidney disease is a strong risk factor for mortality in the US population and is the eighth leading cause of death in the United States.9 Deaths attributed to CKD increased by 63% in the United States during 1990–2017,10 but the impact of CKD on mortality in the US population is likely underestimated because kidney disease is a disease multiplier. For example, presence of CKD increases the risk of cardiovascular disease events and cardiovascular disease mortality.11–13 Among people with type 1 or type 2 diabetes, the presence of CKD increases risk of death 3-fold.14,15 Kidney disease also complicates management of other chronic diseases due to the important role the kidney plays in eliminating drugs and their metabolites.16 Due to its effects on the immune system, kidney disease also impairs recovery from acute infections, as demonstrated by the 4-fold increased risk of hospitalization and mortality with COVID-19.17–19 In fact, one of the earliest reported deaths attributed to COVID-19 in the United States was that of a patient receiving hemodialysis.20 The impact of kidney disease on mortality is also likely underestimated because more than 80% of kidney disease is not recognized, diagnosed, treated, or recorded as a cause of death.1

CKD and Health Disparities

Among all chronic diseases, the greatest racial and socioeconomic disparities and inequities may exist with kidney disease.21 While incidence of KFRT has declined among all racial and ethnic groups, significant disparities and inequities persist (Fig 1).3 Access to care, including home dialysis, access to kidney transplantation, and kidney transplant outcomes, differ by race and ethnicity.22–24 These differences in kidney disease outcomes are due to multiple factors, including lack of access to care, genetic factors, and systemic racism. Health disparities and inequities by race/ethnicity overlap and are rooted in the strong association between social determinants of health and kidney disease risk and progression. Multiple studies have shown that adults initiating dialysis are more likely living in a poverty-defined area.25–28 Approximately one third of patients initiating dialysis live in a ZIP code–defined area with ≥20% of the population living below the poverty line.28 The COVID-19 pandemic highlighted sharp interactions among race, ethnicity, and kidney disease outcomes. More than 6,000 deaths among patients receiving dialysis occurred between March 1 and August 1, 2020, and over 4,300 were among racial minorities.29

Figure 1.

Figure 1.

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Adjusted incidence of kidney failure with replacement therapy (KFRT) in the United States by race, ethnicity and year per million population. Data were obtained from the US Renal Data System.3 Incidence rates for race groups are adjusted for age, sex, and Hispanic ethnicity, and incidence rates for Hispanic ethnicity are adjusted for age, sex, and race.

The United States has a tremendous opportunity to reduce health disparities by investing in kidney disease research. Better understanding of the natural history of kidney disease and its progression could lead to earlier detection and better treatments to prevent kidney failure. Kidney disease can be characterized as a complex disease because it may arise from a combination of genetic, lifestyle, and environmental factors. One of the strongest genetic variants discovered for any complex disease is associated with African ancestry and kidney disease risk.30,31 Research on why genetic variants increase disease risk may lead to novel approaches to prevent or delay kidney failure in persons with African ancestry. Research to increase the number of kidneys available for transplantation and better immunosuppression therapies could help more patients receive a transplant and move away from dialysis dependence. However, without robust investment in research of a chronic disease characterized by strong racial and socioeconomic disparities, inequalities in kidney health will persist and even widen.

Lack of Research Funding Compared to Other Chronic Diseases

The total investment in kidney-related research across the entire National Institutes of Health (NIH) is estimated at just $704 million in 2020.32 This research investment for kidney health is less than 1% of what Medicare spends on nationally on care for kidney disease. Historically, kidney-related research has been inexcusably underfunded compared to other disease states (Table 1), and the federal government must recommit its support to funding advances in kidney medicine and science. This tradition of underfunding kidney-related research was displayed by Congressional COVID-19 emergency funding packages, which omitted the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) despite growing evidence linking COVID-19 morbidity and kidney disease. By properly investing in kidney-related research, particularly by providing robust and reliable funding for NIDDK and other institutes and organizations funding kidney research, the federal government can promote transformative innovation and breakthroughs to improve kidney health.

Table 1.

NIH Investment in Kidney-Related Research Is Less Than Many Other Major Diseases

Disease (Prevalence) 2020 Estimated Budgeta NIH Spending per Patient
HIV/AIDS (1.2 million)52 $3,076,000,000 $2,563.33
Cancer (23.3 million)53 $7,120,000,000 $305.57
Heart disease (30.3 million)54 $1,504,000,000 $49.63
Diabetes (34 million)55 $1,179,000,000 $34.67
Kidney disease (37 million)1 $671,000,000 $18.13
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Abbreviation: NIH, National Institutes of Health.

a

NIH budget estimates from research portfolio reporting tool.32

How Underfunding Research Affects the Research Workforce Pipeline

The nation’s efforts to develop, maintain, and renew its scientific research capacity is stymied by underfunding kidney-related research. Underfunding prevents professional and scientific opportunities to conduct research and collaborate with peers and distinguished faculty and can lead to an exodus of talent from the biomedical workforce. A talented and diverse biomedical workforce cannot be cultivated to advance the scientific understanding of the kidney and improve patient care without a significant increase in the federal government’s support for kidney-related research.

Examples of Research Funding and Population Health

Prior to World War II, federal funding of research was limited and primarily focused on military readiness and acute diseases. Subsequently, growth in patient advocacy efforts coupled with proportionate research investment for chronic diseases, particularly among cancer, cardiovascular diseases, and diabetes, led to strong declines in mortality from these diseases over the past century. President Franklin Roosevelt’s death from a hemorrhagic stroke in 1945 shocked a nation complacent about cardiovascular disease. Approximately one half of all deaths were attributed to cardiovascular disease at the time,33 yet little research was conducted. To address this dearth of knowledge, Congress commissioned the Framingham Heart Study in 1948 to identify risk factors for cardiovascular disease.34 The Framingham Heart Study and other NIH-funded studies eventually identified cholesterol as a major risk factor for heart disease.35 This finding fueled NIH-sponsored research into cholesterol synthesis, leading to the development of cholesterol-lowering medications.

The Veterans Affairs (VA) Cooperative study, the first clinical trial of blood pressure lowering, along with the Public Health Study on Mild Hypertension, elucidated the importance of blood pressure lowering for cardiovascular disease reduction.36 To help educate the public and medical providers on an important disease without symptoms (“silent killer”), Congress invested over $200 million to launch the National High Blood Pressure Education Program in 1973. Cumulatively, federal support of cardiovascular research and education has paid off. Since 1978, cardiovascular disease mortality has declined by approximately 80%,35 and this decline has strongly contributed to an approximate 6-year increase in average US life expectancy from 1980 to 2017.37

Early forms of patient advocacy centered around peer support and educational initiatives to increase public awareness before shifting toward mobilizing a patient population to impact public health policy. By highlighting personal experiences with their disease, patients are uniquely adept at educating legislative, scientific, and regulatory bodies about what research should be prioritized and the crucial role federal funding plays in research and scientific advancements. While many patient communities have had success in these areas, arguably the most successful has been the cancer community. December 2021 marks the 50th anniversary of the United States declaring its “war on cancer” with the signing of the National Cancer Act of 1971.38 This Act, championed by patient advocates like Mary Lasker,39 prescribed a coordinated approach to fighting cancer by establishing the National Cancer Institute (NCI) in its current form, new cancer research centers, and an international cancer research data bank, and led to sustained significant federal funding increases for cancer research.39 Since the National Cancer Act in 1971, NCI’s budget has increased 1,600%, from nearly $379 million in fiscal year (FY) 1972 to $6.44 billion in FY 2020.40

The advocacy efforts of an engaged population of people with cancer led to a significant research investment and spurred substantial improvements in the detection and treatment of cancer, the second leading cause of death in the United States. Better detection and treatment combined with decreases in smoking rates have led to a 31% decline in cancer mortality over the past 2 decades. From 1991 to 2018, cancer mortality declined from its peak in 1991 of 215.1 per 100,000 to 149.0 per 100,000 in 2018. If mortality rates from 1991 persisted, over 3 million more US lives would have been lost to cancer.41 Research has also demonstrated the importance of glycemic control for diabetes-related complications, including kidney and cardiovascular disease,42 and fueled the development of 12 different classes of agents for controlling diabetes.43 Between 1990 and 2016, deaths due to diabetes decreased by 11.4%.44

The Time Is Now for Increased Funding for Kidney Disease

The United States is facing a crisis in health care with escalating costs, an aging population, and an unabated obesity epidemic.45 Both aging and obesity46,47 are associated with heightened risk of developing chronic diseases, including kidney disease. The high rates of obesity among children48 are especially concerning, as this amplifies the lifetime risk of kidney failure. While important to continue fund research in areas like obesity and diabetes, it is vital for the nation’s kidney health that the federal government provide significant additional funding for kidney disease research. Our current health expenditures for kidney disease outpace research investment, and kidney disease expenditures will only increase as the US population ages (Fig 2).

Figure 2.

Figure 2.

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Kidney disease is a public health problem, and expenditures outpace research investment.

Persons with kidney disease are at an increased risk of COVID-19 due to vulnerable physical condition, multiple chronic conditions, weakened immune systems, and the need to leave home frequently to receive care.49 Emerging data also show that the COVID-19 pandemic has led to an alarming number of new patients with kidney disease. Individuals with COVID-19 and no previous history of kidney disease have experienced acute kidney injury (AKI), and the long-term effects of COVID-19 on kidney health and function remain unknown. In a recent national cohort study of 5,216 US Veterans hospitalized with COVID-19, 32% had AKI.50 Of significant concern, 47% did not recover to baseline kidney function by the time of hospital discharge.

Despite these challenges, optimism exists within the kidney community that a renewed focus on kidney-related research will lead to transformative changes in care for people with kidney disease. Patients, kidney care professionals, industry partners, and the federal government have coalesced to support emerging federal policies that advance kidney health in the United States.51 The kidney community urged Congress to appropriate $100 million in emergency supplemental funding for NIDDK, an amount equal to what the National Heart, Lung, and Blood Institute received under the CARES Act (Coronavirus Aid, Relief, and Economic Security Act), to further study the link between COVID-19 and AKI and long-term kidney-related sequelae of COVID-19. The COVID-19 relief legislation signed into law on December 27, 2020, included an additional $1.25 billion in emergency funding for the NIH to support research and clinical trials related to long-term COVID-19. Kidney disease should be an area of research emphasis for COVID-19.

Action Plan

The National Kidney Foundation (NKF) and the American Society of Nephrology (ASN) are working together to advocate for increased funding for NIDDK. In addition to supplemental emergency funding to support critical research that addresses COVID-19 and its intersection with the kidney, NKF and ASN are urging Congress to appropriate at least $2.289 billion in FY 2022 for NIDDK, a $157 million increase over FY 2021 levels. This increase would keep pace with the Biomedical Research and Development Price Index and allow for meaningful growth of 5% but would only be a first step to addressing historical underfunding. NKF and ASN further recommend that a higher portion of NIDDK funding be dedicated to kidney-related research, and that a greater emphasis is placed across the NIH on studying the health disparities and inequities associated with kidney disease to appropriately support these urgent needs.

NKF has convened “Research Roundtables” for basic and clinical sciences to outline a research road map to fight kidney disease. These Roundtables identified and discussed key areas of research in which increased funding within NIDDK and other federal agencies (such as the Agency for Healthcare Research and Quality, Patient Centered Outcomes Research Institute, VA, and Department of Defense) will lead to improvements in the lives of patients. Feedback from persons living with kidney disease will ensure that the patient voice is part of the research road map.

An important area for continued investment is basic and translational science for kidney-related diseases. While there is hope with new and innovative treatments for CKD, such as SGLT2 inhibitors and endothelin antagonists, it is important to note that these discoveries were the result of decades of basic science research that allowed for the bench-to-bedside translation of fundamental laboratory findings. These substantive treatments may have happened sooner if kidney-related research was funded at higher levels historically. In addition to increased funding for NIDDK, the declining pipeline of investigators and number of grants being submitted is an area that needs immediate attention.

Conclusion

Kidney disease affects 37 million American adults, and 1 in 3 US adults is at risk for developing kidney disease. Mortality from kidney disease has increased over the past 15 years while deaths due to cardiovascular disease, cancer, and diabetes have decreased. Research investment for kidney disease will save lives, improve quality of life, reduce health disparities, and lower health care costs. Kidney-related research funding has dramatically lagged behind funding for multiple chronic diseases; this may have fueled the growth of kidney diseases in the United States. Without necessary increases in funding kidney-related research, the number of Americans affected with kidney diseases will only grow, potential improvements in patients’ quality of life will be delayed, and health care spending will continue unabated without fueling advances in care.

Acknowledgements:

The authors thank Tom Mattix for assistance with figure preparation.

Support:

This work was funded by the NKF.

Financial Disclosure:

Mr Murray is employed by the ASN as Senior Policy Specialist. Mr Zimmerman is employed by the NKF as Vice President, Government Relations. Dr Agarwal is past president of the ASN; serves as a consultant for Dynamed; and is on the advisory boards of Goldilocks Therapeutics, Reata, Akebia, Alpha Young, and Angion for work outside the scope of this article. Dr Palevsky is president of the NKF and receives research funding from NIDDK and the Department of Veterans Affairs Office of Research and Development. Dr Quaggin is president of the ASN and receives research funding from the NIDDK. Dr Rosas is president-elect of the NKF; receives research funding from NIDDK, Bayer Healthcare, and Astra Zeneca; and participates in scientific advisory boards for the NKF, Reata, Relypsa, and Bayer. Dr Kramer is past president of the NKF; serves as a consultant for Bayer Pharmaceuticals; reports receipt of honoraria from Nutrica and PeaPod; and receives research funding from NIDDK.

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