Kidney disease affects more than 37 million people in the United States, yet nine in 10 don't know they have it, and access to care varies dramatically based on geography, language, and race. The National Kidney Foundation (NKF) released its 2025 progress report showing that systemic barriers are preventing early detection and treatment, but new programs are beginning to change that reality. Why Does Kidney Equity Matter When Most People Don't Know They're at Risk? Chronic kidney disease (CKD) is a silent condition. Your kidneys filter waste and extra water from your blood, but when they start failing, you often feel fine until significant damage has already occurred. The problem is compounded by inequality: where you live, the language you speak, and your race can determine whether you get tested at all. In rural and underserved communities, kidney testing rates have historically been low. Even among people who see a doctor regularly, most don't receive proper screening for kidney disease or get diagnosed when tests show early kidney damage. This diagnostic gap means millions of people progress to advanced stages of kidney disease without ever knowing they could have prevented it. What Breakthrough Testing Programs Are Actually Working? The NKF's CKDintercept program has demonstrated that at-home testing can reach people earlier and catch kidney disease before it becomes severe. In partnership with Affinia Healthcare, a federally qualified health center in St. Louis, the program tested nearly 1,500 people using uACR (urine albumin-to-creatinine ratio), a key test for early kidney disease diagnosis. The results were striking: half of those tested showed signs of kidney damage that had never been documented before. Even more importantly, 84 percent of participants completed follow-up visits, showing that accessible testing leads to engagement with care. The CKDintercept team is now working with Affinia to implement care team education, electronic health record tools, and workflow changes to ensure annual uACR testing for at-risk patients. In rural America, the impact has been even more dramatic. NKF partnered with Sanford Health, the nation's largest rural health system, to improve kidney disease testing and treatment. Within just 10 months, testing rates nearly doubled. Over 2,000 people who previously had undiagnosed kidney disease now have a diagnosis in their medical records. The use of kidney-protective medications also increased fivefold. Sanford Health is one of 17 healthcare organizations working with the CKDintercept team. Together, these health systems serve more than three million patients across 13 states. How Are Testing Standards Being Improved to Reduce Racial Bias? One of the most significant changes in kidney disease diagnosis involves how kidney function is measured. The NKF's work to make race-free eGFR (estimated glomerular filtration rate) the new testing standard has gained national recognition. eGFR is a calculation that estimates how well your kidneys are filtering waste, and for decades, the standard formula included a race adjustment that many experts argued was scientifically unfounded and perpetuated healthcare disparities. The shift to race-free eGFR means more people, particularly Black Americans, are now being diagnosed with kidney disease at earlier stages when treatment is most effective. The NKF Pharmacy Workgroup received the 2025 American College of Clinical Pharmacy (ACCP) Ambulatory Care Practice and Research Network Outstanding Paper of the Year Award for guidance on using race-free eGFR to improve medication decisions. The NKF also received the Friends of Pathology Award for advancing national adoption of the 2021 race-free CKD-EPI equations. Steps to Ensure You're Getting Proper Kidney Disease Screening - Know Your Risk Factors: If you have diabetes, high blood pressure, a family history of kidney disease, or are over age 60, ask your doctor about kidney disease screening at your next visit. - Request the Right Tests: Ask specifically for a uACR test and an eGFR calculation using the race-free equation. These are the gold standard for early detection and should be done annually if you're at risk. - Understand Your Results: If your doctor finds signs of kidney damage, ask about kidney-protective medications and lifestyle changes that can slow disease progression. - Explore Home Dialysis Options: If you eventually need dialysis, ask whether home dialysis is an option for you. Many patients are never told this choice exists, but it can offer more flexibility and better quality of life. What's Driving the Global Rise in Kidney Disease? The problem extends far beyond the United States. Chronic kidney disease has become a major global health crisis. In 1990, an estimated 378 million people aged 20 and older were living with CKD worldwide. By 2023, that number had nearly doubled to 788 million people. In the United States alone, the age-standardized prevalence of CKD has increased 5 percent since 1990, reaching 11.7 percent of the population in 2023. The global average is even higher at 14.2 percent. CKD is now the ninth-leading cause of death for adults and the 12th-leading cause of healthy years lost to illness, disability, or premature death. The causes vary by region. CKD is more common in regions with high diabetes prevalence, such as Oceania and the Middle East. In other areas, genetic variants within regional populations contribute significantly, such as in West Africa and Central America. This variability underscores how complex kidney disease is and why one-size-fits-all approaches to prevention and treatment don't work. Can Genetic Testing Help Identify Who's Really at Risk? New genetic research is refining how doctors diagnose kidney disease and distinguish between different causes. A recent study published in JAMA Network Open examined the APOL1 gene, which is associated with kidney disease risk, particularly in people of African ancestry. Researchers found that a protective genetic variant called M1 may help distinguish APOL1-associated kidney disease from other causes of CKD. The study analyzed more than 107,000 individuals from multiple cohorts, including hospital datasets and population-based biobanks. Among participants with high-risk APOL1 genotypes, those carrying the M1 variant had an 80 percent decreased likelihood of developing focal segmental glomerulosclerosis (FSGS) or steroid-resistant nephrotic syndrome (SRNS), two serious forms of kidney disease. The clinical significance is important: when patients with high-risk APOL1 genotypes also carry the M1 variant, doctors should investigate other potential causes of kidney disease rather than assuming APOL1 is responsible. In fact, electronic health record review found that 76.9 percent of individuals with high-risk APOL1 genotypes and the M1 variant had alternative, non-APOL1-related causes of CKD, including diabetes, sarcoidosis, and systemic lupus erythematosus. "The findings of this case-control study suggest that APOL1 genotyping is incomplete without testing for M1," wrote Simone Sanna-Cherchi, MD, of Columbia University Vagelos College of Physicians and Surgeons, and colleagues. "Routine incorporation of M1 in the APOL1 genetic testing might enable physicians and genetic counselors to reclassify patients with an APOL1 high-risk genotype as not having kidney disease due to APOL1 and prompt the investigation for an alternative and potentially treatable cause of CKD". This precision approach to diagnosis is particularly important for vulnerable populations, where ancestry and the presence of APOL1 high-risk genotypes might otherwise result in an incomplete diagnostic workup and inadequate care. What's Next in the Fight for Kidney Equity? The NKF's 2025 progress report shows that kidney equity is advancing, but the work is far from complete. The foundation is expanding patient choice and access through bilingual education, home dialysis resources, and peer support programs. They're also fighting for policy changes that increase access to living kidney donation and reduce organ waste. With continued investment in early detection, improved testing standards, genetic precision, and equitable access to care, more people can be diagnosed before serious kidney damage occurs. The message is clear: your zip code, language, or race should never determine whether you get tested for kidney disease or have access to life-saving treatment.
