Addressing Health Disparities 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.

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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 subgroups. Specific examples of disparities include:

• Black or African American patients are more than three times as likely, and Hispanics or Latinos are 1.3 times as likely, to have kidney failure compared to white American patients.
• Black or African American patients are less likely than patients of other racial subgroups to receive any kidney-related care before they reach end-stage renal disease.
• Transplantation rates are associated with higher median household incomes. 

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 delay treatment, and lack of access to information and opportunities to influence policies that directly impact one’s care. To address these disparities, it is important to implement innovative and stakeholder-driven improvements across the kidney care ecosystem.

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 disparities 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 disparities: Interventions can have the greatest impact if the patients and communities most affected by disparities 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 experienced disparities.
• 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 racial and ethnic subgroups. Current policy efforts aim to address long-standing disparities 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.