Ensuring CMS Hears the Patient Voice on Dialysis

Each year, the Centers for Medicare and Medicaid Services (CMS) publishes the end-stage renal disease (ESRD) regulation, known as the ESRD rule. One of CMS’ main jobs is to provide health insurance to people covered by Medicare (that’s most dialysis patients, which is why what CMS does is so important to us at NKF)! The annual ESRD rule lays out what CMS will pay a dialysis facility to care for you over the coming year, as well as the latest policy proposals for improving dialysis.  

At the end of August, we sent CMS a letter describing our position on the ESRD rule. This letter highlighted several key points.

Health equity

Patients already know that dialysis can be unjust. Dialysis facilities are better maintained and staffed in some areas over others, staff in the facility can exhibit prejudice, and structural factors like access to healthy foods or adequate housing can make pursuing home dialysis or a kidney transplant very hard. CMS recognizes this and proposes to start with a simple step: making sure it knows the race and ethnicity of people on dialysis. The goal is to make dialysis facilities aware of when they are providing lower quality care to racially and ethnically diverse people and, eventually, work to close the gaps. We applauded CMS for its work and encouraged CMS to act on the large amount of information we already have regarding health disparities.

Patient-centricity

Patients sometimes tell us that dialysis can feel like it’s one size fits all, and that their preferences and quality of life can be ignored. That’s partially because CMS requires that dialysis facilities meet certain targets to ensure the dialysis is high quality. We wrote to CMS and asked them to make sure dialysis can be flexible enough to accommodate the schedule and prescription that works best for patients’ lives and helps them feel their best, whether that’s dialyzing at home, at night, five times a week, or in longer or shorter sessions.

Home dialysis

NKF is hard at work making sure patients can better access home dialysis. One of the ways we are trying to change the status quo is encouraging innovation in home dialysis machines. We think CMS needs to understand what innovation means to people who have experience with home dialysis We shared with CMS what patients have told us is meaningful in new home dialysis technologies: having greater choice and flexibility and making home dialysis easier.

Interested readers can find the full letter here. We’re going to keep talking to CMS about these and other issues that matter to dialysis patients. In the meantime, keep telling us what’s important to you so we can make sure CMS hears your patient voice!