Work

Erasing Identity

Year: 2025

Type: article

Abstract: Introduction The Centers for Medicare & Medicaid Services (CMS) removed race, ethnicity, and related demographic fields from the ESRD Medical Evidence Report (CMS-2728), effective July 16, 2025, and will remove these data from Medicare Advantage and Medicare part D programs, beginning January 1, 2026. This policy change has profound implications for kidney health and the broader Medicare population. Race and ethnicity are social constructs without intrinsic biological meaning, shaped by evolving sociocultural factors, with complex use in health and medical research.1 Historically, race and ethnicity data are essential in identifying disparities in kidney disease, guiding interventions, and evaluating progress in narrowing care inequities. Eliminating these data would severely compromise our ability to measure, monitor, and address disparities in access, quality, and outcomes for patients with kidney disease, and risks dismantling decades of progress in health equity, undermines data accuracy, and limits our capacity to detect inequities, understand their drivers, and implement targeted solutions, placing both patients' lives and the gains of decades-long efforts at risk. This commentary reviews the history for CMS's demographic data collection, examines the consequences of removing race and ethnicity from federal data, and offers recommendations to preserve analytic integrity and accountability to all American individuals in CMS data. History of Race and Ethnicity Data Collection Since 1973, Congress has required CMS to collect demographic data to track the prevalence, care, and outcomes of kidney disease for specific patient groups and monitor emerging trends in dialysis and transplantation.2 The CMS-2728 form has been the most comprehensive source of kidney disease data in the United States, capturing nearly all individuals initiating KRT. The United States Renal Data System is congressionally mandated to use these data in a manner that will permit “(D) the determination [and trends] of patient mortality and morbidity rates … and other indices of quality of care; and (E) [evaluating] such other analyses relating to the treatment and management of ESRD.”3 Through rigorous vetting and refining of these data collection efforts, the CMS subsequently added race and ethnicity fields to other forms over time, such as the CMS-2746 Death Notification Form, Medicare enrollment documents, and Center for Medicare and Medicaid Innovation models, to ensure demographic transparency in quality monitoring, risk adjustment, and equity-focused programs. The removal of race and ethnicity fields from kidney data, undertaken without input by representatives of the kidney community, undermines both the intent of the enabling legislation and the long-standing precedent of modifying the forms through expert and community input. Scope of Recent Changes The removal of race and ethnicity fields from kidney-related forms is part of a broader federal shift. In February 2025, the Center for Medicare and Medicaid Innovation stopped collecting race, ethnicity, sexual orientation, and gender identity data in new model enrollment forms. Subsequently, in July 2025, the CMS-2728 and CMS-2746 forms were revised to remove race and ethnicity entirely and three health literacy–related items, as well as country/area of origin or ancestry, and to modify sex assigned at birth (Figure 1).4 Notably, recent social needs data collection items were retained, although CMS has proposed removing screening for social drivers of health in the ESRD Quality Incentive Program.5 However, in August 2025, CMS updated the FY2026 Hospital Inpatient Final Rule to remove the hospital commitment to equity measure and requirements for collecting social drivers of health data from inpatients.6 This raises questions about the internal consistency of these CMS changes. Although there are examples of other countries that declined to share race or ethnicity data to protect minoritized groups (e.g., Australia and New Zealand), we were unable to identify a stated rationale from CMS or another government source for the removal of race/ethnicity from the CMS-2728 and other federal health data.Figure 1: Key milestones in CMS race and ethnicity data collection for kidney disease. CMMI, Center for Medicare and Medicaid Innovation; CMS, Centers for Medicare & Medicaid Services; OMB, Office of Management and Budget.Consequences for Kidney Health The implications of these changes are profound. Based on the 2024 USRDS Annual Data Report, Black individuals have a 3.5-fold higher incidence of kidney failure and lower rates of transplantation and home dialysis. Removing race and ethnicity data hinders the ability to monitor these disparities and intervene appropriately. Without demographic data, inequities become invisible to policymakers and clinicians, representing a missed opportunity to design targeted interventions for minoritized populations, and ultimately affecting the health of all American individuals. Race and ethnicity data have improved the health of patients with kidney disease; for example, a public health model implemented by the Indian Health Service, informed by race-specific and ethnicity-specific data, achieved a 54% reduction in kidney failure among American Indian/Alaska Native persons with diabetes.7 With race and ethnicity data, reductions in racial disparities in access to transplantation following backdated waiting time to dialysis start were detected and sustained to improve transplant rates.8,9 Medicaid expansion under the Affordable Care Act also substantially reduced mortality for all nonelderly adults initiating dialysis, particularly for Black patients with kidney failure.10 These examples underscore that race and ethnicity data are indispensable for identifying inequities, measuring progress, and informing evidence-based policy to reduce disparities in kidney health. Risk adjustment for quality measures and public reporting, such as Dialysis Facility Star Ratings and Scientific Registry of Transplant Recipient Center rankings, rely on demographic data for accurate comparisons. Although adjustment for race and ethnicity in quality metrics may not always be appropriate, stratification by these groups provides important insight into where to focus quality improvement efforts. Monitoring the impact of kidney health policies on federal payment models like the ESRD Treatment Choices Model, Comprehensive Kidney Care Contracting, and the new Increasing Organ Transplant Access model becomes challenging without these data. Furthermore, race and ethnicity data are critical for record linkage and public health surveillance. For instance, in the Early Steps to Transplant Access Registry, data from over 35 transplant centers are linked with CMS-2728 data, including race and ethnicity, to increase certainty in identifying unique individuals. The loss of these data will compromise data quality as well as quality improvement to reduce racial disparities in access to transplantation. Finally, legal and regulatory compliance is at stake. Federal civil rights statutes, including Title VI, require demographic monitoring to prevent discriminatory practices. The removal of these fields without public input raises legal and ethical questions and risks undermining patient trust in CMS's commitment to equitable care. Potential Remedies To address these concerns, CMS should reinstate race and ethnicity fields on the CMS-2728, Medicare Advantage, and Part D enrollment documents, consistent with long-standing practice. At a minimum, these fields could be reintroduced as optional with an active opt-out provision, with transparent communication about the purpose and use of race/ethnicity data. CMS should provide a clear rationale for these removals and seek public comment before implementing further changes. If reinstatement of race/ethnicity fields is delayed, the kidney community must identify alternative data collection methods.11 For example, data on race and ethnicity from the Medicare Beneficiary Summary File could be linked to kidney datasets, although this excludes patients without Medicare coverage. The forthcoming Health Resources and Services Administration initiative could expand race and ethnicity data collection to earlier points in the referral and evaluation pathway.11 The CMS announcement does not preclude health care providers, including dialysis organizations and transplant centers, from choosing to collect race and ethnicity data at their own facilities. These organizations, including the Organ Procurement and Transplantation Network, should also continue collecting race and ethnicity data to track access to care and outcomes for their patient populations and use these data to implement quality improvement interventions and monitor disparity reduction efforts. Conclusion The removal of race and ethnicity from CMS forms is not merely a technical change—it is a fundamental retreat from the nation's capacity to measure and improve kidney health for all. For decades, the kidney community has used these measures to identify inequities, drive targeted interventions, and track progress toward fairer outcomes. Removing these tools does not just erase data, it erodes accountability, transparency, and the ability to improve care for all populations. Eliminating race and ethnicity data will not eliminate disparities. It will simply blind us to their existence.

Source: Journal of the American Society of Nephrology

DOI: 10.1681/asn.0000000946

Authors: Rachel E. Patzer, Amal N. Trivedi