Eating healthier is often recommended to help slow chronic kidney disease (CKD). But for many people—especially African American patients—the challenge isn’t knowing what to do… it’s being able to do it sustainably. In a new “Patient Voice” commentary in CJASN, longtime advocate Glenda Roberts reflects on her personal journey with CKD and the systemic barriers that many patients still face today. Her message is clear: improving kidney health requires more than advice, it requires long-term, culturally relevant support and policy change.*

A Personal Story That Reflects a Bigger Problem

Roberts shares that she was diagnosed with proteinuria at age 21, during a pre-employment physical. Her doctor offered almost no usable guidance—just vague comments like “you’ll figure it out.”

With no real support, she spent decades teaching herself what a “kidney-friendly diet” meant, eventually becoming vegan. She avoided dialysis for 40 years, but she emphasizes an important truth:

“My experience reflects what many African Americans with CKD face—unclear advice, little cultural context, and barriers that make healthy choices hard to maintain.” — Glenda Roberts

Her point aligns with findings from a study by Dodgen et al., which looked at a community fruit-and-vegetable intervention for African American adults with CKD.

What the Study Showed

Dodgen and colleagues interviewed participants after the nutrition program ended. Their insights were powerful:

• Patients could adopt healthier diets when barriers were removed, such as cost, food access, and lack of cooking guidance.
• But once the program ended, familiar obstacles returned—high prices, limited transportation, and no long-term support.
• Without sustained access to affordable produce or culturally aware education, most changes were hard to maintain.

The study highlights what many patients already know: short-term help isn’t enough.

Why Systemic Change Matters

Roberts explains that real, lasting improvements in kidney health require policy changes, not one-off projects. She outlines key opportunities:

1. Food Programs That Last

States have tested “food as medicine” models through Medicaid waivers, resulting in fewer hospitalizations and lower costs. Making CKD patients eligible for permanent nutrition support (such as produce prescriptions) could help patients nationwide.

2. Funding for Community Health Workers

CHWs are proven to reduce hospitalizations and improve chronic disease management, especially for underserved communities. But funding is inconsistent. Making CHWs eligible for Medicare/Medicaid reimbursement would change that.

3. Built-In Nutrition Services in CKD Care

Nutrition therapy is often treated as a special add-on. Roberts argues it should be a standard part of CKD management, especially because dietary changes can delay progression and improve quality of life.

4. Transportation Support

Medicaid often covers rides to medical appointments but not to grocery stores. Expanding coverage to include food access, like mobile markets or delivery, could remove one of the biggest barriers patients face.

5. Long-Term Community Partnerships

Roberts calls on NIH and PCORI to fund multiyear, community-led programs, not short-term studies that disappear when grants end.

A Call to Action

Roberts warns that researchers can’t keep proving that removing barriers works—only to let those barriers return once a study ends.

“We know what works. Now we need policies and partnerships that make support permanent.” — Glenda Roberts

For patients, this means advocating for programs that last. For researchers, it means designing studies with sustainability in mind. For policymakers, it means acting on decades of evidence.

Why This Matters for You

For many people living with CKD, improving nutrition isn’t about willpower; it’s about access, affordability, and support. This commentary is a reminder that:

• Healthy eating is easier when barriers are removed.
• Short-term programs help, but lasting policies change lives.
• Your voice matters. Sharing your experiences helps push for better, more equitable kidney care.

If you’ve ever struggled to maintain a kidney-friendly diet because of cost, transportation, or lack of guidance, you’re not alone, and you deserve better long-term support.

* Clinical Journal of the American Society of Nephrology (November 13, 2025). “Advancing Health Equity in Kidney Disease through Sustainable Policy and Community Partnership: Patient Perspectives and Research Realities”. journals.cjasn.com

Image source: Glenda V. Roberts Bio Kidney Health Initiative

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