Miller Advocates for Early Prevention and Innovative Treatment to Improve Kidney Health

Washington, D.C. - Congresswoman Carol Miller (R-WV) joined her colleagues on the Ways and Means Health Subcommittee for a hearing examining the persistent challenges in end-stage renal disease (ESRD) care, including stagnant patient outcomes, barriers to innovation, and disparities in access to treatment.

Six in ten Americans live with a chronic disease, and ESRD remains one of the most severe, costly, and preventable conditions among them. Although Congress extended Medicare coverage to ESRD patients in 1972, the care delivery system has seen little meaningful improvement in more than five decades. Today, misaligned payment incentives continue to favor in-facility dialysis over home-based options, slowing the adoption of innovative treatments and limiting patient choice. These challenges are especially acute in rural and underserved communities, where access to care is already constrained. Patients may also face discriminatory practices in commercial dialysis coverage, further complicating their ability to receive timely and appropriate treatment. The hearing provided Members with an opportunity to question witnesses on these systemic issues and explore policy solutions to improve outcomes and expand access for ESRD patients.

A video and full transcript of Congresswoman Miller's remarks can be found below.

Congresswoman Miller began by discussing her work advancing high-quality kidney care and addressing gaps in innovation for patients with end-stage renal disease. She emphasized the need to expand access to new treatments and discussed her Kidney Care Access Protection Act before questioning Mr. John Butler, President and Chief Executive Officer of Akebia Therapeutics, on how the legislation would help sustain innovation and improve patient care outcomes.

"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.

When I first immersed myself in the kidney community, very quickly I learned one of the biggest issues facing ESRD patients is the lack of innovation in dialysis treatments.

Twenty-five percent of all Medicare fee-for-service spending goes to kidney care, but new therapies are rare.

I've introduced the Kidney Care Access Protection Act with my colleague Terri Sewell to restore innovation and hope for kidney patients, because they deserve the same access to innovation as every other Medicare beneficiary.

This legislation ensures patients continue to receive high-quality care and timely access to innovative treatments by extending innovation payments for three years, providing Medicare Advantage parity through direct facility payments, and correcting CMS errors that previously failed to account for rising labor and supply costs.

Mr. Butler, given your 25 years of experience advancing pharmaceutical care for renal patients and your leadership at Akebia in developing therapies, can you explain how the Kidney Care Access Protection Act would help sustain innovation in ESRD treatments and ensure that patients continue to have access to high-quality, cutting-edge care?" asked Congresswoman Miller.

"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. So thank you and thank you for your question. And I'll give one statistic, I heard the number this morning, that there are 1300 late stage clinical programs in development for Oncology. There is one for patients on dialysis.

So the idea that is embodied in the Kidney Care Access Protection Act is that there's a sustainable reimbursement pathway that still falls under the the ESRD benefit. So, you know, has that same, you know, kind of built in discounts to the so, so you're controlling costs. But when you think about investing, you know, when you're making the decision, I can invest in Oncology, I can invest in kidney care. And I know that there's a path that I can invest and bring that innovation to patients who need it, who absolutely need it.

There's an innovation in prevention in CKD. When you start dialysis, you deserve the same kind of innovation. And the part, the section 101 of the bill really does define that for any private sector to look at that and say, 'I know I can invest here and it will help patients in the end.' And we're very, very supportive of that. Thank you," responded Mr. Butler.

Before questioning Ms. Ashli Littleton, a home dialysis patient in Clarksville, TN, Congresswoman Miller concluded by highlighting her pending legislation, the Improving Access to Home Dialysis Act. This bill would expand Medicare support for staff-assisted home dialysis, helping more patients with end-stage renal disease safely receive care at home while improving quality of life for those who need additional assistance.

"Ms. Littleton, my first year of marriage was spent in Clarksville, Tennessee when my husband was serving in the 101st. That's really where I learned to become a grown-up, so I have very fond memories. Thank you for being here and sharing your experience.

As someone who is utilizing staff-assisted home dialysis, your perspective is incredibly important as we think about how to better support patients living with ESRD.

I've been working on legislation, the Improving Access to Home Dialysis Act, that would, for the first time, ensure Medicare supports staff-assisted home dialysis by providing an add-on payment and expanding access for patients who may need extra help, whether temporarily or long-term due to medical conditions.

My question for you, Ms. Littleton, is from your experience, how has access to staff-assisted home dialysis impacted your quality of life, and what would it mean for patients like you if Medicare more consistently covered and supported this option for those who need assistance to safely dialyze at home?" asked Congresswoman Miller.

"Thank you. 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 and I have the staff there that can assist me. And so with that, I'm able to do it and not be afraid of anything going wrong because I know that I have backup there that are very accessible to me. They're just a phone call away," responded Ms. Littleton.

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