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Protect Access to Life-Saving Medicine for Kidney Patients

Reps. Carter, Kuster, Miller, and Sewell Introduce Bipartisan Legislation to Protect Access to Life-Saving Medicine for Kidney Patients

Without Congressional Action Dialysis Patient Care Will Be Put in Jeopardy


July 31, 2023

WASHNGTON – U.S. Representatives Earl L. “Buddy” Carter (R-GA), Ann McLane Kuster (D-NH), Carol Miller (R-WV), and Terri Sewell (D-AL) introduced the bipartisan Kidney Patient Access to Technologically Innovative and Essential Nephrology Treatments Act (H.R. 5074) to protect access to lifesaving medicine for patients battling End Stage Renal Disease (ESRD). Congressional action is necessary to prevent the Centers for Medicare & Medicaid Services (CMS) from altering how so-called oral-only drugs for patients on dialysis, such as phosphate lowering therapies (PLTs), are covered by Medicare.

“We advocate for an extraordinary quality of life for the home dialyzor community – and the looming change in oral-only phosphate lowering therapies coverage for kidney patients prompted us to speak up. Without congressional action, our members’ health and well-being is threatened,” said Nieltje Gedney, Executive Director of Home Dialyzors United. “Patients work closely with their physicians and trusted pharmacists to follow a strict, tailored treatment plan to manage their phosphorus levels. Moving oral-only medicine into the bundle directly interferes with that shared decision-making and moves patients to a protocol-based treatment including older therapies. Thank you to Representatives Carter, Kuster, Miller, and Sewell for their leadership on behalf of all Americans battling kidney disease.”

Patients who are on dialysis rely on medications taken orally and moving coverage of these therapies from Medicare Part D to the ESRD Prospective Payment System would risk serious consequences to their health. Nutrition is a large part of managing high phosphorus levels and many patients in the home dialysis community are minorities, low-income earners, or from rural areas where they are more likely to live in “food deserts” and the ability to source proper food is inconsistent or unavailable. Furthermore, this change in coverage will result in higher treatment costs for patients on dialysis regardless of if they are on phosphorus lowering medicines or not. Restricting access to phosphorus binders and raising costs of dialysis treatments will only worsen the health inequities these patients deal with every day.

CMS created the ESRD Prospective Payment, known colloquially as the “ESRD bundle,” over 10 years ago to help manage the cost of dialysis care. CMS knew then that coverage for oral-only drugs like PLTs did not belong in the ESRD bundle so they delayed their inclusion in the bundle. Congress has passed legislation three times to extend the delay and maintain coverage for these therapies under Medicare Part D. However, if lawmakers do not pass an extension again, oral-only therapies will be added to the ESRD bundle on January 1, 2025.

The full text of the Kidney PATIENT Act can be read here.

About Home Dialyzors United

Home Dialyzors United is a 501(c)(3) non-profit organization which is the largest patient and care partner organization dedicated to home dialysis in the nation. Our mission is to inspire, inform and advocate for an extraordinary quality of life for the dialyzor community.

For more information, please visit or connect with us on


Nieltje Gedney, Executive Director


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