Kidney Disease Advocacy

RSN welcomes the new administration and the 117th Congress (2021-2022).  Stay Tuned for Opportunities to Take Action to Support Legislation that Affects People with Kidney Disease

Why Should You Advocate for Kidney Care? Get involved and make a difference. RSN’s advocacy program focuses on State/Federal regulatory and legislative issues that impact or improve the care of people who have chronic kidney disease, including dialysis and kidney transplantation.

According to the latest U.S. Renal Data System Report more than 660,000 Americans are being treated for kidney failure, also called End-Stage Renal Disease (ESRD). Of these, 468,000 are on dialysis and more than 193,000 have a functioning kidney transplant. Each year 100,000 people are newly diagnosed with stage 5 chronic kidney disease (CKD) which is the same as ESRD. About 30 million US adults are estimated to have CKD and most are undiagnosed. Over 103,000 people in the U.S. are waiting for a kidney transplant.

National legislative decisions are made within one or both bodies of Congress (i.e., the House of Representatives or the Senate), must be passed by vote, and approved with the President’s signature in order to become a law.

Only one thing can help change the course of this disease, and that is for anyone who is affected by it, whether patient, family member or renal professional, to get involved. Join us in educating your elected officials about how they can help with legislation relating to kidney disease, access to treatment, dialysis, transplantation and organ donation.

Use RSN’s Find My State and Local Representatives tool to find out who you can reach out to with your concerns about kidney care legislation.

Upcoming Legislation

H.R. 8594/S.4750 Restore Protections for Dialysis Patients Act The Medicare Secondary Payer provisions enacted 40 years ago protect people with ESRD against private health plans’ unfair policies that deny meaningful, affordable coverage. Insurance companies should not be able to dictate who they can insure and who they cannot. They will always try and fix the game to their advantage. It is a dangerous precedent and will damage the kidney care community’s access to care at a catastrophic level.

RSN urges congress to VOTE YES on H.R. 8594/S.470 – Restore Protections for Dialysis Patients Act. It closes the loophole to prevent insurance companies from kicking us off our private insurance into Medicare before the 30-month period without a choice.

Listen to Lori Hartwell’s comments on this issue and read RSN’s letter to the House of Representatives and Senate via the button below:

Take Action to Support Current Legislation that Affects People with Kidney Disease

H.R.5426 – Improving Access to Home Dialysis Act of 2021 Bipartisan legislation to expand access to home dialysis for kidney patients. Home dialysis often leads to better health outcomes and fewer hospitalizations for people who need dialysis; it is also far more flexible than in-center dialysis.

Urge Congress to Support the Living Donor Protection Act of 2021! The Living Donor Protection Act of 2021 (H.R. 1255/S. 377) would promote and protect living organ donation. If passed, this bill would prohibit discrimination of living organ donors by employers, life insurance providers, disability and long-term care insurance carriers.

The Chronic Kidney Disease Improvement in Research and Treatment Act of 2021 (S. 1971/H.R. 4065) This bipartisan bill can save lives and improve quality of life for millions. Passing this Act would be a significant step toward improving care for people who have kidney disease. Here are the major points that RSN believes will help the kidney community and why they will lead to optimal outcomes.

Legislation that RSN Members Helped Become Law via RSN’s Advocacy Portal

The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act (H.R. 5534) has passed and will go into effect in January 2023! Once signed by the president, this will extend immunosuppressive coverage past the 36-month cut-off currently in place to cover the medications for the life of the transplant.  Immunosuppressants is a type of medication people who have been transplanted must take daily to lower the body’s ability to have an immune response so they do not reject the donated organ. Thank you to all who worked to make this happen!

Read: KidneyTalk Blog on Advocacy 

Read: RSN Letters to Regulatory Agencies

Read: Clinical Journal Patient Perspectives

How It All Works

Get Social With Your Elected Officials


Patient Bill of Rights

RSN presents this page of patient rights and responsibilities courtesy of ESRD Network 18 of Southern California. Observing them will contribute to more effective care and greater satisfaction for you and the healthcare team. Federal law CFR (405.2138) protects your rights as an End Stage Renal Disease (ESRD) patient without regard to cultural, economic, educational, or religious background, sex, or the source of payment for care.