Health Education Advocacy and Learning (HEAL) is a non-profit collaborative created to provide every community with access to resources that will help them thrive. Through HEAL, communities of color are educated, advocated for, and connected. While HEAL Collaborative works across many areas of health conditions, they have been especially active with advocating for those with Chronic Kidney Disease (CKD)—a long-term condition categorized as the gradual decline in kidney health and function.
For decades, patients with CKD have been able to get their treatments and medications covered through certain insurances. However, impending changes can affect patients’ ability to afford their treatments. HEAL Collaborative is working to keep these policies as is through advocacy for the Kidney PATIENT Act, which aims to postpone these changes for at least two years.
Table of Contents
Who Does Chronic Kidney Disease Affect?
Chronic Kidney Disease affects 20% of the non-Hispanic Black/African-American population, according to the Centers for Disease Control and Prevention (CDC). While kidney failure affects many other racial and ethnic groups, African Americans are disproportionately affected due to common risk factors like family history, age (60+ years), hypertension, diabetes, and disparities in the quality of healthcare across these groups, according to the National Kidney Foundation.
Additionally, the CDC estimates that as many as 9 out of 10 adults with CKD are not aware that they have it. This can lead to later diagnosis and, thus, a more progressed condition and more pertinent treatment.
What Are the Changes?
Policymakers want to change how certain CKD medications are covered by Medicare, starting January 1, 2025. This change may cause patients to lose coverage and access to medications and treatments necessary for those living with CKD.
In this video, Alan Ryan of Ardelyx explains the impact this change can have and emphasizes that the Kidney PATIENT Act is about “making sure [the policies] that have been the case for over a decade…simply continue.” If the Kidney PATIENT Act (H.R. 5074) is not passed by January 1, 2025, impactful changes will happen.
How is the Treatment Covered?
Most CKD patients on dialysis have insurance coverage through Medicare. Currently, phosphate-lowering oral medications are prescribed to most patients and are covered as a Part D drug benefit.
The Center for Medicare and Medicaid Services (CMS) plans to move these oral medications to provide payment for these medications directly to dialysis providers as a Part B benefit within the ESRD Prospective Payment System, the bundled payment system it uses to pay for services related to dialysis. Moving the oral medication to a different coverage group will create financial and access problems for patients.
In this patient highlight video, kidney patient and advocate, Taura, talks about her challenges finding the right insurance coverage for her treatment due to some instability in employer-provided insurance. After her company was bought out, her insurance coverage had to change, causing her to find ways to remain in the network her providers were in. Taura shares how her job was “taken over by another company that didn’t even offer insurance—they offered insurance plans—and when you have health issues, insurance plans aren’t gonna do much for you.”
While Taura was fortunate enough to find insurance coverage and a transplant, impending changes may cause different outcomes for others.
How is HEAL Collaborative Helping?
HEAL Collaborative uses its voice to bring awareness to, advocate for, and help pass the Kidney PATIENT Act, which aims to postpone these proposed changes. With the help of Congressmen and policymakers across over 10 U.S. states, HEAL is collaborating with key pillars in Black communities, such as churches, to share information about the Kidney PATIENT Act. In June 2024, Tennessee Congresswoman Marsha Blackburn introduced the act to the Senate, S4510, with a mission to keep pushing it further toward positive change.
State and local policymakers nationwide are also lending their support to the bill. In this video, Wisconsin State Senator Dora Drake said, “It was important that I came to the event focused on kidney care because health equity is still an issue that we are fighting for, especially among African American communities,” she explains, “Being in spaces where people feel safe to ask questions, get information, [and I learned what I] need to be doing as a policymaker.”
How You Can Make a Difference
With your signature, you can raise awareness of these issues and help move the Kidney PATIENT Act forward.
Sign the petition to help those living with Chronic Kidney Disease keep access to their coverage.
