Congresswoman Carol Miller (R-WV) joined the Ways and Means Health Subcommittee on Mar. 19 for a hearing focused on challenges in end-stage renal disease (ESRD) care, including limited patient outcomes, barriers to new treatments, and disparities in access.
The discussion is important because six in ten Americans live with chronic diseases, and ESRD is among the most severe and costly. Despite Medicare coverage for ESRD patients since 1972, there has been little progress in improving care delivery or encouraging innovation. Payment incentives often favor facility-based dialysis over home options, which can limit patient choice—especially in rural areas where access is already difficult.
During the hearing, Miller spoke about her efforts to advance high-quality kidney care and close gaps in treatment innovation. She highlighted her Kidney Care Access Protection Act before questioning John Butler, President and CEO of Akebia Therapeutics, about how the legislation could help sustain innovation. “I’m really really pleased to be here today as our committee focuses this particularly vulnerable population and a chronic disease I have spent much of my work in Congress addressing: individuals who are living with end-stage renal disease,” Miller said. She added that while kidney care accounts for a quarter of all Medicare fee-for-service spending, new therapies remain rare.
Butler responded by saying, “Congresswoman, first, thank you so much for your advocacy for patients with ESRD. You have been a leader and everyone in the community appreciates that… There are 1300 late stage clinical programs in development for Oncology. There is one for patients on dialysis.” He explained that the proposed act would create a sustainable reimbursement pathway that encourages investment in kidney care innovations.
Miller also discussed her pending Improving Access to Home Dialysis Act with Ashli Littleton, a home dialysis patient from Clarksville, Tennessee. The bill aims to expand Medicare support for staff-assisted home dialysis to help more patients receive care at home safely. “I’ve been working on legislation…that would…ensure Medicare supports staff-assisted home dialysis by providing an add-on payment and expanding access for patients who may need extra help,” Miller said.
Littleton shared her experience: “For me, it’s just more confidence in my ability to do the dialysis at home. I know I have the support if anything goes wrong…”
Miller has represented West Virginia’s 1st district since replacing Evan Jenkins in 2019 according to Wikipedia. She previously served in the West Virginia House of Delegates from 2006 to 2018 as reported by Ballotpedia. Born in Columbus, Ohio in 1950, she currently lives in Huntington according to Biographical Directory of the United States Congress. Miller graduated from Columbia College, South Carolina with a BA degree in 1972 according to Columbia College.
The hearing reflects ongoing efforts by lawmakers like Miller to address systemic issues facing ESRD patients through legislative action aimed at improving both innovation and access.
