Living with Chronic Kidney Disease: Facts, Trends, and New Hope

 This article presents the most up-to-date and reliable information on chronic kidney disease (CKD) and end-stage renal disease (ESRD), based on the publication US Renal Data System 2020 Annual Data Report: Epidemiology of Kidney Disease in the United States, published in the American Journal of Kidney Diseases (2021, Volume 77, Suppl 1). The report was prepared by a multidisciplinary team of leading American physicians, scientists, and researchers in nephrology, epidemiology, and public health, including Prof. Kirsten L. Johansen, Dr. Glenn M. Chertow, Dr. Robert N. Foley, Dr. David T. Gilbertson, Dr. Charles A. Herzog, among others.

This publication is the result of work conducted by the US Renal Data System (USRDS), the official national system for collecting and analyzing data on the incidence, treatment, and outcomes of kidney disease in the United States. It is supported by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the Centers for Medicare & Medicaid Services (CMS).

The information shared here has been carefully selected to be most useful to patients and their families—with a focus on the real-world challenges that arise throughout the course of the disease and treatment.

“Today, more people with kidney failure are living longer and with better quality of life—but awareness and timely treatment choices are more important than ever.”

Expert Insights

Chronic kidney disease (CKD) and end-stage renal disease (ESRD) are among the most significant global health challenges. According to the US Renal Data System 2020 Annual Data Report (USRDS), millions of people are affected by these conditions, and the number of patients undergoing dialysis or living with a kidney transplant continues to grow. Up-to-date data and expert analysis help patients and their loved ones make informed decisions and better understand the risks, treatment options, and social aspects of the disease. The following sections highlight selected expert opinions and key takeaways from leading doctors and researchers to help guide you through the major questions related to chronic kidney disease.

1. How common is chronic kidney disease?

"According to the latest data from the National Health and Nutrition Examination Survey, the prevalence of CKD among adults in the U.S. has remained relatively stable—just under 15% over the past 15 years. However, the number of individuals with key risk factors like older age, diabetes, and hypertension continues to rise."

Explanation: The stable percentage of CKD despite increasing numbers of at-risk individuals suggests progress in prevention or early detection of the disease in high-risk groups. This is encouraging, but it also underscores the ongoing need for regular screening and preventive care—especially for those with diabetes and high blood pressure.

2. What are the trends in end-stage renal disease and its treatment?

"The unadjusted incidence of ESRD has increased over the past 20 years and continues to rise. In recent years, however, the rate of increase has slowed, and the standardized incidence has declined from its peak in 2006... In 2018, there were 554,038 dialysis patients and 229,887 individuals living with a functioning transplanted kidney."

Explanation: The rising incidence of ESRD reflects improved patient survival, better care, and greater access to treatment. Dialysis and transplantation remain the primary therapies, though more attention is being paid to conservative (non-dialysis, non-transplant) management, particularly for certain patient populations.

3. Are there racial and social disparities in kidney disease and access to treatment?

"Racial disparities in CKD and ESRD incidence—as well as access to transplantation—remain apparent... The incidence of ESRD among Black patients declined by 20% between 2008 and 2018, but it remains more than 2.5 times higher compared to White patients."

Explanation: While progress has been made, racial and social disparities remain a concern, especially when it comes to access to living donation and the best available treatments. Addressing this issue is a key focus for policymakers and public health organizations working toward healthcare equity.

4. What are patients’ expectations and why is end-of-life planning important?

"Over 40% of patients are unsure about their prognosis, and more than half of the remaining patients expect to live at least 10 more years, despite statistical data showing that average survival on dialysis is under 10 years for patients over age 44. Patients with more optimistic expectations are less likely to have chosen a decision-making proxy or considered their end-of-life preferences."

Explanation: This highlights the need for honest and open conversations between doctors and patients about future expectations and care planning, including end-of-life decisions. Without these discussions, opportunities for improved quality of life and timely care decisions may be missed.

5. How did the COVID-19 pandemic affect patients with kidney failure?

"In the first half of 2020, there were 11,200 hospitalizations for COVID-19 among dialysis patients. Mortality among dialysis patients was 37% higher between March 29 and April 25, and 16% higher between April 26 and July 4, compared to the same periods in 2017–2019."

Explanation: Patients with kidney failure are especially vulnerable during pandemics and infectious disease outbreaks. The increased mortality underscores the need for targeted protective measures for these patients during future public health emergencies.

Q&A Section

1. How many people in the U.S. live with chronic kidney disease or receive treatment for kidney failure? 

Answer: As of the end of 2018, there were 554,038 dialysis patients and 229,887 individuals with a functioning transplanted kidney in the United States. This places the U.S. among the countries with the highest rates of ESRD globally—2,242 cases per million population.

2. What are the main risk factors for developing chronic kidney disease and kidney failure? 

Answer: The primary risk factors for developing CKD and ESRD are older age, diabetes, and high blood pressure (hypertension). As the number of people with these risk factors increases, prevention and early detection become more critical than ever.

3. Has there been any progress in treatment or patient care in recent years? 

Answer: Despite the growing number of patients with kidney failure, mortality among ESRD patients has decreased, and the number of kidney transplants has increased. In 2018, the kidney transplant rate for dialysis patients reached 3.6 per 100 patient-years, continuing an upward trend that began in 2014 after a prolonged decline.

4. What are the alternatives if I don’t want dialysis or a transplant? 

Answer: The report notes that some patients opt for conservative (non-invasive) management, meaning treatment without dialysis or transplant. This approach is gaining more attention, particularly for older adults or those with multiple other health conditions. The decision is highly personal and should be made in consultation with a medical care team.

5. How did COVID-19 affect people with kidney failure? 

Answer: Patients with kidney failure were especially vulnerable during the pandemic. In just the first half of 2020, there were 11,200 COVID-19-related hospitalizations among dialysis patients. Mortality increased by 37% during March–April and by 16% during April–July, compared to the same periods in 2017–2019. Mortality rates were even higher among individuals with kidney transplants.

Conclusion

The questions and answers above, based on the latest epidemiological data and analysis from the US Renal Data System 2020 Annual Data Report, aim to help patients and their families navigate the complex landscape of chronic kidney disease and kidney failure. Through summaries and expert recommendations, patients can gain clearer insight into key risks, treatment options, social impacts, and the specific challenges they may face. Informed decision-making and active participation in one’s care are essential for improving quality of life and treatment outcomes. For more details and up-to-date statistics, consult your healthcare provider and review the full report available at www.usrds.org/2020.

Source: Johansen KL, Chertow GM, Foley RN, et al. US Renal Data System 2020 Annual Data Report: Epidemiology of Kidney Disease in the United States. Am J Kidney Dis. 2021;77(4)(suppl 1):Svii–Sviii, S1–S597. www.usrds.org/2020