Why Medicaid Coverage Matters for People Living with Kidney Disease

Medicaid is a federal and state health insurance program that provides healthcare coverage to eligible people with limited income and certain health needs, including those living with kidney disease, kidney failure, and kidney transplants. It helps people access medications, transportation, dialysis-related services, transplant care, routine lab monitoring, and the clinical care needed to prevent serious complications.

Learn more about Medicaid. 

Kidney disease is progressive and difficult to manage without consistent access to care. 

People living with chronic kidney disease (CKD) may need regular:

• Lab tests
• Primary care
• Nephrology care
• Blood pressure management
• Diabetes management
• Kidney-protective medications
• Nutrition support
• Care coordination

All of these things are enabled or enhanced by Medicaid coverage.

For people with kidney failure, the impact of losing coverage is even greater. Dialysis is life-sustaining treatment. Missing dialysis, losing transportation, or being unable to access needed medications can quickly lead to emergency care, hospitalization, or death.

For kidney transplant recipients, Medicaid coverage can help protect the gift of a donated organ. Post-transplant care requires lifelong immunosuppressive medications, frequent monitoring, specialist visits, and quick response to complications or signs of rejection. A disruption in coverage can threaten transplant health and lead to a return to dialysis.

The interim final rule creates community engagement reporting requirements for certain Medicaid beneficiaries. These requirements are often referred to as Medicaid “work requirements.” 

In practice, that means some people could be required to prove they are working, volunteering, attending school, participating in a work program, or completing another qualifying activity for at least 80 hours each month to keep their Medicaid coverage. 

NKF supports helping people with kidney disease remain healthy, independent, and able to work when possible. But many kidney patients are already managing a serious chronic illness as a daily obligation.

A person living with kidney disease may be able to volunteer occasionally, help a neighbor, attend a community event, or work when their health allows. That is very different from being required to document 80 hours of qualifying activity every month as a condition of keeping health coverage. 

For people managing dialysis, transplant care, advanced CKD, fatigue, lab work, medications, transportation, and frequent appointments, a rigid monthly reporting requirement can quickly become another barrier to staying healthy. Additionally, complex reporting systems can create real risks for patients. A failed data match, duplicative paperwork request, unclear notice, or difficult verification process should not cause an eligible kidney patient to lose coverage.

NKF urged CMS to make sure that patients with end-stage renal disease (ESRD), advanced or high-risk CKD, or kidney transplant recipients are protected when their condition or treatment burden makes compliance with community engagement reporting requirements inappropriate or threatens access to care.

NKF recommended that CMS revise the rule to specifically protect kidney patients from avoidable coverage loss. This includes excluding individuals with ESRD, advanced or high-risk CKD, and kidney transplant recipients from community engagement requirements when appropriate.

NKF also urged CMS to provide clear guidance to states. States should identify kidney patients through reliable data sources whenever possible before asking patients for more paperwork. These sources could include Medicare enrollment data, Medicaid claims and encounter data, provider documentation, dialysis facility documentation, transplant center documentation, and other forms of available kidney-specific data.

If data is incomplete, states should accept documentation from providers, dialysis facilities, or transplant centers. NKF also urged CMS to prohibit disenrollment while ESRD, CKD, transplant, Medicare, or medical frailty status is still being verified.

NKF made sure to highlight the experiences of real people. One dialysis patient told NKF that Medicaid supplemental coverage helps remove “one less burden” while managing daily decisions about potassium, phosphorus, water, sodium, sugar, lab work, and dialysis care.

Further, a kidney transplant recipient shared that Medicaid helps cover follow-up appointments and monthly medications needed to maintain a healthy transplant. These stories reflect why coverage continuity matters. Medicaid is not separate from kidney health; it is often what allows patients to stay stable, manage their condition, preserve a transplant, slow disease progression, and participate in work, family, and community life.

NKF recommended that CMS revise the rule to specifically protect kidney patients from avoidable coverage loss. This includes excluding individuals with ESRD, advanced or high-risk CKD, and kidney transplant recipients from community engagement requirements when appropriate.

NKF also urged CMS to provide clear guidance to states. States should identify kidney patients through reliable data sources whenever possible before requesting additional paperwork from patients. 

These sources could include:

• Medicare enrollment data
• Medicaid claims and encounter data
• Provider documentation
• Dialysis facility documentation
• Transplant center documentation
• Other forms of available kidney-specific data

When data is incomplete, states should accept documentation from providers, dialysis facilities, or transplant centers. NKF also urged CMS to prohibit disenrollment while ESRD, CKD, transplant, Medicare, or medical frailty status is still being verified.

Read NKF's letter to CMS.

NKF made sure to highlight the experiences of real people. 

One dialysis patient told NKF that Medicaid supplemental coverage helps remove “one less burden” while managing daily decisions about potassium, phosphorus, water, sodium, sugar, lab work, and dialysis care.

A kidney transplant recipient shared that "Medicaid helps cover follow-up appointments and monthly medications" needed to maintain their transplant. 

These stories reflect why coverage continuity matters. Medicaid is not separate from kidney health– it's what allows patients to stay stable, manage their condition, preserve a transplant, slow disease progression, and participate in work, family, and community life.

As CMS and individual states implement this rule, NKF will continue advocating for policies that protect people living with kidney disease from unnecessary coverage loss and ensure that Medicaid continues to support health, independence, and access to care.

Want to support NKF's policy work? Become a Voices for Kidney Health advocate today.