Addressing Health Inequities in Kidney Care

In the United States, approximately 37 million adults, or 15% of the population, have chronic kidney disease. Many individuals who develop chronic kidney disease remain largely asymptomatic and, as a result, may not receive care until their kidney function declines into end-stage renal disease or kidney failure, a permanent condition. There are two treatment options at that stage: dialysis or kidney transplantation. However, a nationwide organ shortage means that dialysis is the prevailing treatment option for the more than 785,000 patients with end-stage renal disease. Around 93,000 people are on the kidney transplant waiting list.

Graphic: More than 37 million people in the U.S. are estimated to have Chronic Kidney Disease

Kidney failure has considerable health consequences. People living with kidney failure commonly experience high rates of related medical issues, increased risk of death, and poor quality of life. In 2019, total Medicare expenditures for beneficiaries with chronic kidney disease who did not have end-stage renal disease was $87.2 billion and reached $51.0 billion for beneficiaries with the condition.

Chronic kidney disease and end-stage renal disease also disproportionately affect people from racial and ethnic minority groups and underserved populations. Specific examples of inequities include:

A variety of factors contribute to these disparities, including social determinants of health, health literacy, inefficiencies in care delivery, race-adjusted estimates of kidney function that influence clinical decisions and can bias or delay treatment, and lack of access to information and opportunities to influence policies that directly impact one’s care. To address these inequities, it is important to implement innovative and stakeholder-driven improvements across the kidney care ecosystem.

Read AIR's comment to CMS in response to RFI# CMS-3409-NC, entitled “Request for Information; Health and Safety Requirements for Transplant Programs, Organ Procurement Organizations, and End-Stage Renal Disease Facilities.

The Centers for Medicare and Medicaid Services (CMS) in recent years has made policy changes to address patient safety and continues to solicit input on quality and equity issues within the systems supporting kidney health. For instance, CMS solicited a Request for Information to inform changes to regulations governing organizations that provide kidney health care through Medicare and Medicaid. Our response, submitted in February, is based on our work supporting kidney care providers, implementing and evaluating innovative care delivery models, and helping organizations understand patient perspectives and priorities for innovations in treatment as a way to improve health care.

Supporting Efforts to Improve Kidney Care

AIR has been involved in CMS efforts to improve the care of this patient population and is currently carrying out the implementation of both the End-Stage Renal Disease Treatment Choices (ETC) Model and the Kidney Care Choices Model (KCC).

The ETC Model, which began on Jan. 1, 2021, aims to incentivize home dialysis and kidney transplants for Medicare beneficiaries with end-stage renal disease. Despite widespread consensus from providers and patients that these are both preferable to in-center hemodialysis, in-center hemodialysis has continued to be the most common treatment for patients with end-stage renal disease in the U.S. The ETC Model was designed with consideration for the important impact of social determinants of health on chronic kidney disease and end-stage renal disease and is one of the first CMS models to directly address health equity.

The KCC Model, which began in January 2022, adds financial incentives to promote better care management of patients with chronic kidney disease stages 4 or 5, end-stage renal disease, to the accountable care organization structure from the Comprehensive End Stage Renal Disease Care Model structure.


Elevating the Voices and Lived Experiences of Patients, Families, and Communities to Inform Change

Patients, their families, and communities can play a vital role in addressing kidney health inequities by informing policy and regulatory changes that accurately reflect patient experience. There are several ways to gather necessary insights from each of these groups and actively engage them in decision-making. Here are a few ways to gather such insight, based on observations from AIR’s work and published literature:

  • Directly engaging with communities most affected by inequities: Interventions can have the greatest impact if the patients and communities most affected by inequities have a role in designing them. Surveys, focus groups, convenings, and other data collection activities are necessary ways to understand how such individuals navigate an often fragmented health care system, the factors that affect their access to care, and what their priorities are for addressing challenges and barriers. Partnering with trusted community members and organizations is crucial to building and sustaining trusting relationships and buy-in, particularly among communities who historically have been marginalized or disadvantaged.
  • Providing educational materials that are accessible and easy to understand: To help make health information about kidney disease accessible to a general audience, AIR uses patient and family advisory committees, which partner with medical and scientific experts to translate information into effective educational materials. Through these committees, patients and families facing chronic kidney disease and end-stage renal disease have served critical roles as peer mentors, material co-authors, and dissemination partners.
  • Involving patients in the process of defining transplant success: Despite kidney transplantation offering both better quality of life and increased life expectancy in the long-term, most measures of transplant outcomes have focused on the period immediately after receipt of an organ. Meaningful improvement will require a reconsideration of current metrics to account for both the quality and the quantity of transplants. Transplant program performance measures should reflect the priorities of patients and it is important that performance information is made accessible and useful to patients and their providers.

Looking Forward

Chronic kidney disease has considerable health and economic costs to both individuals and the health care system and these costs disproportionately affect those who are Black, Indigenous, and People of Color.

Chronic kidney disease has considerable health and economic costs to both individuals and the health care system and these costs disproportionately affect BIPOC. Current policy efforts aim to address long-standing inequities in access to kidney failure treatment, namely transplantation, and to foster greater accountability to ensure that patients and families are knowledgeable, engaged, and experience better care and outcomes. Alternative payment models, such as the End-Stage Renal Disease Treatment Choices (ETC) Model and Kidney Care Choices Model (KCC), have the potential to reshape the delivery of care by aligning financial incentives with quality measures. But to be effective, organizations should strive to engage patients, providers, and policy makers to ensure that policy objectives reflect what matters to patients and their families.