Advocacy

Impacting Policy on Dialysis, Drug Coverage, and Transplant Donation

September 15, 2022, 10:54am EDT

While Voices for Kidney Health advocates frequently hear about NKF legislative efforts around the Living Donor Protection Act, federal appropriations, and other bills, they may be less aware about the federal regulations and policies that directly affect the lives of people with kidney disease. These rules and regulations can have almost as big an impact on the lives of kidney patients as some of our major legislative initiatives.

For example, the End Stage Renal Disease (ESRD) Prospective Payment System and Quality Improvement Program govern much of the care that dialysis patients receive. They set the standards against which dialysis providers are measured, determines which drugs are covered, and provides incentives to dialysis providers to invest in new and emerging technology. Similarly, the laws that govern hospital payment can play a big role in whether deceased donor kidneys are actually transplanted or whether they wind up getting discarded.

Helping Policymakers Understand the Patient Perspective 

Modifying these policies can be complex, time-consuming, and painstakingly slow. But NKF is constantly working to educate federal policymakers about how these rules and regulations affect patients, to make sure patients’ voice are heard, and to push for change where it’s needed. Where we think it’s necessary, we support additional regulations that require providers to do more for patients. Ideally, we also support incentives (like extra reimbursement) that reward high quality care. 

The federal government also tracks a great deal of data that helps us understand how care is being delivered, so we comment on issues related to data collection and reporting. And if that information is reported, we want it shared with patients so that they can assess for themselves which provider would work best for them.

These are all different tools in our policy and regulatory tool box, but the most important one is the patient voice. We rely on stories provided by patients like you to help inform and refine our policy objectives. Kidney Advocacy Committee (KAC) members, our NKF Public Policy Committee (PPC), and other Voices volunteers are an essential part of sharing patients’ stories and informing our regulatory and policy agenda.

Recently, NKF submitted comments on three priority issues, including the ESRD Prospective Payment System, the Physician Fee Schedule (which governs how doctors are paid), and reimbursements for research organs. We also submitted comments on a request for information about how Medicare Advantage plans can better meet the needs of kidney patients. 

While policy heavy, these are important details that matter to patients, providers, and policymakers alike. Learn more about NKF’s policy and regulatory activities by visiting our regulatory advocacy page, and to learn more about volunteering for the KAC, PPC, or other NKF advocacy initiatives, email our Government Relations staff here.