▶ 0:10:57We ready?
▶ 0:11:00Miss Thompson.
▶ 0:11:02Are you ready, Mr. Thompson?
▶ 0:11:04I'm ready.
▶ 0:11:09The subcommittee will come to order.
▶ 0:11:12Good afternoon. I want to thank our witnesses for being here to discuss an important issue improving kidney health in America.
▶ 0:11:20Chronic kidney disease endstage uh disease are devastating and expensive uh diseases. 15% of Americans adults live with some form of CKD and more than 800,000 patients live with ESRD. These patients are very sick with more than 500,000 of them require multiple hours of dasis uh each week.
▶ 0:11:45Overall almost 60% of patients die within five years of the starting dialysis. CKD and are also very very expensive. Despite being only 1% of the uh Medicare population patients wise, it's it makes up 7 7% of what's being spent at Medicare.
▶ 0:12:09In fact, diabetics and high blood pressure together account for 75% of ESRD cases. I'm interested to hear from you what your thoughts are, but 75% I when I seen that was a shocker. I never thought it would be something like that. We must work together to prevent chronic diseases for patients or else taxpayers will have to pay the bill.
▶ 0:12:32That means improving kidney health by supporting payment policies that increase innovation and in treatment and care delivering. Additionally, new drugs and medic medical devices can help patients manage complications with ESRD, but Medicare payment policy must reward also innovation. We must modernize Medicare coverage to better prevent and treat uh kidney disease as well as improve patients outcomes.
▶ 0:13:03I look forward to discussing this important topic and and solutions with my colleagues today. I now like to recognize the gentleman and uh from Texas and a very good friend, Mr. Dogget. It's all yours.
▶ 0:13:17Thank you very much, Mr. Chairman, for your leadership on this hearing and certainly thanks to all of our witnesses. Miss Littleton, I'm particularly pleased to see you here as one of the 800,000 Americans living with instate renal disease. We appreciate your efforts uh to share your story with us and the challenges that so many face that our other witnesses deal with concerning this dreaded disease.
▶ 0:13:41Certainly improving uh access to home dialysis, which would enable patients to go through grueling treatment in the comfort of their homes, is important. But we must also address the drivers of instate renal dis instage renal disease and how to protect kidney health. Republicans pass the largest cut in health care in US history last year.
▶ 0:14:05A cut that will leave millions of Americans without access to a family physician and essential medications to manage diabetes, hypertension, cholesterol, and other contributors to kidney health. About three of every four Americans with kidney disease, three of every four, that's really extensive, they are relying on Medicaid for dialysis, transplant care, and medications.
▶ 0:14:32And the cuts that were made to Medicaid last year were significant. They jeopardized the health of those patients and preventive care for millions of consumers. While patients are guaranteed Medicare coverage when they're diagnosed with instate renal disease, much work remains to prevent folks from ever reaching that point.
▶ 0:14:52And for those with debilitating conditions, the two-year waiting period for Medicare coverage should be eliminated for all, as it was for instate rental disease and ALS patients. I authored the Stop the Wait Act to ensure that consumers who receive uh disability benefits do not have to wait another two years for comprehensive life-saving access to Medicare. An estimated 56,000 Americans die every year while they're waiting.
▶ 0:15:22They've been found to be disabled under thalation, but they cannot get access to Medicare. We should do that for them. for them uh what has been done for people like Miss Littleton who can access their Medicare coverage. And when people uh receive Medicare, they should also be guaranteed protection to purchase a metagap supplemental policy.
▶ 0:15:44For consumers with a complex medical condition like ESRD, a metagap plan is essential to afford expensive lifelong care. Yet, Medicare gap plans are exempt from the Affordable Care Act's protections for pre-existing conditions. People like Miss Littleton can be denied a plan or charged more.
▶ 0:16:06While consumers over the age of 65 with this condition, have been offered protection, anyone under 65, like Miss Littleton, can be discriminated against. And for consumers of all ages with other health conditions, there's no protection. I authored the Close the Medigap Act.
▶ 0:16:22To protect consumers from such discrimination and extend the Affordable Care Act protections to Medicare to improve access to home dialysis, Congress needs to close the metag gap to help more consumers afford their preferred treatment. The other uh significant development that bears on what's happening here are the uh really significant Trump cuts to medical research and FDA staff rubber stamped here in Congress.
▶ 0:16:52We will see fewer innovative treatments because of those cuts. The nonpartisan Congressional Budget Office estimated that just a 10% cut to the National Institutes of Health funding and a nine-month delay in FDA review would result in 53 fewer new drugs in coming years. These cuts have been proposed uh nearly four times greater than what CBO analyzed, the the actual Trump cuts that he's asking for.
▶ 0:17:21So for a uh instate renal disease uh patient struggling with the side effects of diialysis, for a cancer patient that's seeking a cure, for a child with a rare disease hoping to live to adulthood, these cuts are really catastrophic as clinical trials have been cancelled and re research labs have been shuttered.
▶ 0:17:42I hope that bipartisan interest in this hearing will extend to a bipartisan commitment to restore decimated medical research and health coverage gaps that are harming kidney disease patients and many others in our country. And I look forward to your testimony and our discussion. Thank you, Mr. Chairman.
▶ 0:18:00Thank you. Uh now I'd like to introduce the witnesses. Miss Littleton is an ESRD patient from Clarksville, Tennessee. By the way, it's a beautiful place that my dad's from that area. Grew up there. I spent a lot of time in the summers down there in that area. It's beautiful country and beautiful people. Uh Dr. Susan Woodnik is a professor at the University of Washington. Dr. Robert Taylor is the chief medical officer of Dasis Clinic Dr.
▶ 0:18:30John Butler is the president and CEO of AQBA Therapeutics. Thank you for joining us today. your written uh statements will be made part of the hearing record and uh you have each five minutes if we can stay that uh in terms of oil or oil or oil remarks. Uh Miss Littleton, it's all yours.
▶ 0:18:50Thanks, Chairman Buchanan, Ranking Member Dogget, and distinguished members of the subcommittee. Thank you for the opportunity to testify today. Diialysis is the reason I am alive. My name is Ashley Littleton and I live in Clarksville, Tennessee. I'm living with endstage renal disease. My kidneys no longer function.
▶ 0:19:16And for the past nine years, dialysis has done the job my body can no longer do. I'm a 10-year kidney patient and a 9-year dialysis warrior. Not by choice, but by necessity. My kidney journey began the way it does for far too many people with years of uncontrolled high blood pressure and diabetes. In late 2015, I was diagnosed with chronic kidney disease. I was told that dialysis was 10 years away.
▶ 0:19:42But because of lack of clear education, communication, and understanding of how severe my kidney damage already was, my disease progressed rapidly. In November of 2017, while I was at work as a preschool teacher, I received a call from my doctor telling me I needed to start dialysis immediately. At just 27 years old, I reported to a dialysis center for the first treatment. My life changed overnight.
▶ 0:20:09I began incenter dialysis every other day before work. I woke up at 4:00 a.m., had a treatment from 5 to 9, and went straight to work by 10:30 a.m. I worked with children ranging from 6 weeks to 6 years old. I was exhausted, but those children were the best part of my day. Their smiles and hugs kept me showing up even when my body felt completely drained.
▶ 0:20:33Later, a parent of a student who recognized what I was going through and asked if I had if I'd ever been told about home dialysis. I had not I did not know there were options beyond incenter diialysis. Together with my family and my new medical team, we began making informed decisions about my treatment for the first time. I transitioned to peritineal dialysis which allowed me to dialize at home every day after work.
▶ 0:21:01While this option gave me more flexibility, it was not sustainable for me. I spoke up and asked about home hemmoiialysis. With proper training and support of my mother as my care partner, I began home This finally gave me control. Being at home, I was able to work full-time, travel, manage my treatments directly with my care team. Home home dialysis allowed me to live my life with dignity, independence, and flexibility.
▶ 0:21:31It allowed me to be a participant in my care, not just a patient. In September of 2022, I received the call for a kidney transplant. It was one of the happiest days of my life and also one of the scariest. Unfortunately, after 2 weeks, I was told that my kidney had clotted and it would need to be removed. The devastation broke my heart.
▶ 0:21:57My nephologist advocated for me to make changes and remain on the transplant list. Stress, depression, and the demands of daily life slowed my progress. But with medication, determination, and the support of an accountability partner who is also a kidney transplant patient, I reached my goal. Today, I am once again actively waiting for the call and actively seeking a living donor. Despite everything, I am grateful. Dialysis allows me to wake up each morning and see the sunshine.
▶ 0:22:28I prioritize my physical and my mental health and I have learned to advocate for myself. But I know that my experience is not the norm. Too many patients are making lifealtering decisions without fully understanding their options. Education is inconsistent, rushed, and often delivered only once. And at the exact moment, patients are most overwhelmed.
▶ 0:22:52Kidney patients deserve clear, repeated, and patient centered education about all available treatments. They deserve time to ask questions, involve their families, and align care and decisions with their personal goals and lives. That requires a health care system that values collaboration, communication, patient empowerment, not just survival. Today, I chose not to be silent. I'm an advocate and an ambassador and a health coach for kidney disease.
▶ 0:23:21I'm also working with another kidney warrior to develop a support group that advocates, educates, and empowers people about CKD and ESRD. I believe in doing this because no patient should have to rely on social media to learn how to survive kidney failure. I'm living proof that when patients are informed, supported, and trusted, they can take control of their health and their lives.
▶ 0:23:47Thank you for the opportunity to share my story and for your commitment to improving kidney care in this country.
▶ 0:23:55Thank you, Miss Professor Watnik. You're you're recognized. Thank you, Chairman Smith, Chairman Buchanan, Ranking Member Dogget, and members of the Health Subcommittee. Thanks for this opportunity to testify today on a matter of life and death for more than 37 million Americans, the state of kidney health in our nation. I'm Suzanne Watnik and I'm a professor of medicine at the University of Washington.
▶ 0:24:22and I practice at the Seattle VA caring for Americans veterans living with kidney diseases for over 30 years and I serve as the health policy scholar at the American Society of Nefrology. I want to start by sharing a story about one of my patients, a veteran who served this country with distinction. In the 1990s, he received a kidney transplant that changed his life, just like Miss Littleton's hoping for, giving him decades of freedom, health, and time with his family.
▶ 0:24:53But recently, that transplant failed. And when he walked back into a dialysis facility to start treatment again, he was struck by a devastating realization. Dr. Watnik, it looks the same as it did 30 years ago. As a physician who has sat at the bedside of thousands of patients over three decades, I must tell you he's right. And in 2026, that reality is To understand where we are, we must look at where we started.
▶ 0:25:22In 1972, the government made a remarkable bipartisan commitment expanding Medicare to guarantee access to dialysis and kidney transplants for every citizen regardless of age, income, or disability. And today that commitment costs the government $50 billion annually as a mandatory Yet innovation in this field is stagnant. Dialysis is life extending, yes, but not life transforming.
▶ 0:25:50Consider the war on cancer declared in 1971. Since then, we've seen revolutions in oncology, but kidney research has been left behind. Currently, the NIH invests only $19 per patient on kidney research compared to 400 plus on cancer and over 2,700 for HIV and AIDS. In fact, total federal investment in kidney research equals only about 1% of Medicare costs required to treat just kidney failure.
▶ 0:26:21Because of the underinvestment, outcomes for Americans with kidney failure are grim. More than half of people who start dialysis today will not be alive in five years. Just like Chairman Buchanan mentioned, it's a survival rate worse than many advanced cancers. Even for those who survive, quality of life is poor, marked by exhaustion and the physical toll of treatment. Furthermore, we face a silo problem.
▶ 0:26:47From the perspective of a person with kidney failure, there is little connection between the dialysis and transplant systems. Even though transplant is the optimal therapy for almost everyone, as we sit here, one American will likely die waiting for a kidney transplant, current Medicare reimbursement structures are failing to spur value-based care.
▶ 0:27:09CMMA models like the ESRD treatment choices model attempted to align incentives but multiple factors prevented achieving desired outcomes including increased home dialysis and transplantation which were the desired outcomes. So what are the solutions? How do we move from highcost lateage crisis management to prevention and innovation? First we need leadership.
▶ 0:27:33HHS should establish an officer of kidney health and transplantation to coordinate kidney care research and quality across agencies, align incentives, and ensure a shared national strategy. Second, we must move upstream. Kidney disease is often silent. Nine of 10 Americans living with kidney disease, they don't know that they have it. We have to incentivize primary care providers to screen for kidney diseases, especially for those with risk factors.
▶ 0:28:03Third, we must modernize the Medicare ESRD bundled payment system to deliver better value. The current system disincentivizes innovation with low returns and inadequate pathways for incorporating transformative therapies. We must ensure Medicare patients, including those in MA, can access new treatments that improve and save lives. Fourth, we must empower patients to choose home dialysis, starting with awareness. Education is key.
▶ 0:28:32For example, the kidney disease education benefit should be expanded from stage four only disease to stage three and five too so more patients can make informed choices. Fifth, we need to improve access to transplant by deso siloing dialysis and transplant care and making the system more transparent to patients. Together, we have to innovate so that dialysis facilities in five years are unrecognizable to our patients or better yet so patients never have to walk through those doors at all.
▶ 0:29:01I love that my patients, our veterans and people with kidney diseases have certain guaranteed treatments, but I want them to have the best care possible. Millions of Americans with kidney diseases are waiting. Let's do our best to provide it for them. Thank you very
▶ 0:29:16Thank you, Dr. Taylor,
▶ 0:29:21Chairman Buchanan, ranking member Dogget, and members of the subcommittee. My name is Robert Taylor, and I'm a practicing nefologist in Nashville, T, Tennessee, chief medical officer at Dallas's clinic incorporated, DCI, and co-founder of Rich Kidney Care. Today I want to tell you about how DCI is making a difference across the continuum of kidney care and offer my thoughts on how innovation in prevention in patient centered kidney care can improve patients lives.
▶ 0:29:51DCI cares more than 13,500 people on diialysis across more than 240 outpatient fac.
▶ 0:29:58Mic a little bit closer.
▶ 0:30:00I want to make sure everybody can hear.
▶ 0:30:01And more than 90 hospitals in 30 states in the US Virgin Islands. We started the company two years before Medicare first covered diialysis to save the lives of eight patients with kidney failure until they could receive a transplant. Our notfor-profit organizational structure allows us to focus on improved patient care without worrying about an immediate return on investment.
▶ 0:30:25DCI delivers diialysis care with lower mortality, fewer hospitalizations, and lower Medicare costs than other national Reach Kidney Care provides upstream innovative care in nine states for more than 10,000 people with kidney disease, transplant recipients, and those approaching kidney failure. Reach's preemptive kidney transplant rate is more than triple the estimated rates in the United States. DCI is also increasing access to home diialysis.
▶ 0:30:54For example, our partnership with Blue Cross Blue Shield of Alabama has helped 38% of patients start diialysis at home. We have also been at the forefront of kidney transplantation. Last year, we supported 995 life-changing transplants. DCI is committed to providing access to patients in rural areas. Though challenges persist, we recently reopened a Dallas center in TMIC, Oregon after it was closed by previous ownership.
▶ 0:31:24This clinic will likely operate at a loss as current Medicare reimbursement does not adequately cover cover the cost of operations. In other r rural areas, we have not been as fortunate. For more than 34 years, DCI operated a clinic in West Plains, Missouri until our medical director resigned. We were able to keep the doors open for an additional 18 months by having another physician drive three and a half hours each way to cover the clinic.
▶ 0:31:53Despite our best efforts, we made the difficult decision to close the clinic due to workforce challenges. More broadly, DCI has been an original participant with CMMI kidney models, including the current kidney care choices model, and are committed to working with the agency to innovate kidney care.
▶ 0:32:12Finally, DCI is a founding member of the nonprofit Kidney Care Alliance, which comprises independent notfor-profit companies that share best practices, address fragmentation in diialysis care, and better health outcomes for for our patients. I would like to make five recommendations to the committee that can help diialysis providers improve care for for the people they serve.
▶ 0:32:36First, encourage CMS to better incentivize care for advanced CKD patients to help prevent the need for Second, encourage CMMI to include Medicare Advantage in alternative payment models that test kidney innovation as opposed to just original Medicare so more ESRD patients can Third, ensure Medicare reimbursement rates and annual adjustments are designed and structured to support the viability of smaller providers,
▶ 0:33:06not for-profit providers, and those serving patients in rural and other underserved communities. Fourth, allow patients with ESRD as their primary diagnosis to receive concurrent hospice in Dallas's care. We are appreciative of the support from many members of this committee in advocating on this issue, including Chairman Smith, Congressman Kelly, and Congresswoman Delbeni. We continue to encourage Congress to advance legislation to allow for concurrent care broadly.
▶ 0:33:36And finally, support innovative approaches to increase transplantation, including adjustments to quality measures and through the organ transplant model. With that said, I would like to thank a dear patient of mine for joining me here today and thank the committee for allowing her to tell her story directly to you. Her ability to dialize at home has been truly transformative.
▶ 0:34:01Ashley has faced multiple challenge challenges including a failed kidney transplant but has always bounced back with resilience, courage and curiosity. It has been my true privilege privilege to care for her. I thank you for your attention and look forward to your questions. Thank you, Mr. Butler. You're
▶ 0:34:23Thank you, Chairman Buchanan, Ranking Member Dogget, and members of the Health Subcommittee for holding this important hearing on kidney disease. My name is John Butler. I'm the president and CEO of Akibia Therapeutics, a biomed company in Massachusetts dedicated to developing innovative treatments for patients with kidney disease. Thank you for the opportunity to testify on this timely topic. I've personally worked for 35 years to advance new discoveries for patients with kidney disease.
▶ 0:34:49Because kidney disease is at the core of the chronic disease crisis facing this nation, it needs all that science can bring to address it staggering human toll and clinical burden. Yet Medicare policies are driving away investment where it's needed the most. [clears throat] There's an adage in healthcare that payment drives practice. There's no better example than the Medicare ESRD payment system.
▶ 0:35:13that rewards the least amount of care provided, discourages the uptake of new technology, and drives rigid protocols in a world where in every other disease, science is rapidly pursuing more personalized treatment. In the case of dialysis, it's also true that payment drives innovation, clearly to the detriment of patients. The ESRD prospective payment system pays a flat bundled rate for every dialysis session, regardless of a patients individual needs.
▶ 0:35:43When innovative products have been developed for this population, there is no long-term payment that allows them to actually reach the patients for whom they were developed. CMS recently created a transitional drug add-on payment adjustment or Teddapa to pay separately for innovative drugs on top of the base rate. a positive development, but it only lasts for two years. The resulting payment cliff renders diialysis centers unable to afford to offer them.
▶ 0:36:14The first two TEDPA drugs have failed to reach their intended patients due to insufficient payment. Although these drugs were important therapies to manage serious conditions that arise from the loss of kidney function, the current Teddap mechanism has failed to provide true access to patients. There is almost no investment in innovation for dialysis patients today. There's a basic fairness issue here. The mortality associated with kidney disease rivals that of cancer.
▶ 0:36:44Yet Medicare beneficiaries with diseases like cancer or heart disease or diabetes have access to new therapies which in turn fuels more scientific breakthroughs. Diialysis patients on the other hand don't share that same access. But that's because they're they are subject to different and unfair Medicare payment policies. The current situation is becoming a critical weakness in the ability of nefologists to improve health outcomes.
▶ 0:37:13Once a patient loses kidney function and starts dialysis, they have the best chance of receiving a life-saving transplant within the first two years. So, it's imperative that their underlying health status be meticulously managed. The need for a blood transfusion from poorly treated anemia can trigger a patient to lose their place on the organ weight list or poorly managed phosphorus levels can increase their mortality risk.
▶ 0:37:38We urged the subcommittee to address the innovation desert in dialysis by approving HR6214, the kidney care access protection act introduced by Congresswoman Carol Miller and Terry Suil. Section 101 of the bill would extend the TEDappa from two to three years to give more time for providers to select appropriate patients and integrate new drugs into treatment protocols.
▶ 0:38:04It would mirror the three-year drug passrough mechanisms that exist in the Medicare outpatient and inpatient hospital payment systems. Following Teddapa, the bill would re restructure the post teddapa discounted payments so they are paid to a dialysis facility only when the product is used.
▶ 0:38:24Currently, CMS spreads the add-on across every dialysis treatment, dramatically underpaying a facility which may want to provide the drug while rewarding a facility that restricts patient access.
▶ 0:38:39The bill would require the reallocation of those same dollars by tying reimbursement to the actual use of a These changes are consistent with other parts of Medicare, would be easy for CMS to implement, yet would allow a patient who needs a new therapy to actually receive the therapy.
▶ 0:38:58Importantly, they'd restore fairness by ensuring dialysis patients have the same access to innovation as every other Medicare America has long led the world in medical discovery because we believe that science, innovation, and compassionate policy can work together to improve lives. Patients with kidney failure deserve the same commitment. When innovation reaches patients, hope follows.
▶ 0:39:24By modernizing the ESRD payment system and passing HR6214, Congress can help ensure that next generation therapies do not sit on the shelf, but instead reach the dialysis chair where they can change and save lives. Thank you.
▶ 0:39:43Thank you for your testimony. We now proceed to the Q&A session. Before I begin uh with my question, I want to thank Miss Littleton for you coming here today and have the courage and let us let us understand your story better because obviously we talk a lot about a lot of different things. This is critical to a large community including yourself. So, thank you for your leadership on this issue. I mean that Dr. Dr.
▶ 0:40:10Watnik, let me I was surprised to learn that many cases of CKD and ESD are preventable chronic diseases. We keep spending more on health care yet you could make the argument we get sicker as a nation. We must sp reduce the cost of chronic diseases in terms of that burden in the United States. How do how do how do you when you look at chronic diseases impact kidney health?
▶ 0:40:36What can Congress do to support better kidney health care through chronic disease management?
▶ 0:40:45Can you put your speaker on?
▶ 0:40:48Thank you. It's the first time I'm here. Sorry about that. Um,
▶ 0:40:51you're doing great. [laughter]
▶ 0:40:54Thank you. There's there's a lot we can do. So much appreciated for that question. And I think what I would start with is saying that we need to start upstream. We want people never to walk through those dialysis treatment doors. And so, how can we make sure first of all that we know people even have kidney disease. So, making sure that we're advocating for screening those nine, you know, nine out of 10 people with kidney diseases aren't aware that they have it.
▶ 0:41:20Anything we can do to ensure that that upstream care is recognized is a benefit. The second thing is we have new drugs in our armamentarium. A lot of the drugs that have been discovered, for example, for diabetes and heart failure happen to also slow down kidney disease and prevent endstage kidney disease. And um wouldn't it be wonderful if we were also able to provide research funding to specifically target kidney diseases?
▶ 0:41:49Anything we can do to just slow down kidney disease, for example, delaying six months, one year is a benefit for patients. And if we can make sure that we're slowing down that kidney disease by providing the therapies through targeted research with appropriate funding, for example, for research, we can make sure that patients um are better treated appropriately to slow down their diseases.
▶ 0:42:18Let me uh Dr. Dr. Taylor. Uh, let me I'm very interested in valuebased care, how that can help reduce health care cost. We must move away from fee for service and pay look at more pay for pay for outcomes. I know there's been effort to transition kidney care to value based care. So, I'd like to get your thoughts about moving in that direction.
▶ 0:42:42I think it can make a difference, but that's that's just kind of what I hear by third third parties, but obviously you deal with it firsthand. like to get your professional opinion.
▶ 0:42:52Well, first of all, I it goes back to what Suzanne, Dr. Watnick was saying. Um, with appropriate care, many patients don't need to end up on diialysis. Unfortunately, over time, primarily payment and policy have been focused on As a PA as a nefologist, one of the real benefits of what I do is a my ability to walk with a patient as they go through the various stages of chronic kidney disease.
▶ 0:43:19We have been a participant in the CMMI models including the the ESCO which was the first demonstration model and currently the CKCC model. We very strongly support how there's been policy and money moved to take care of patients with stage four and stage five kidney disease. Also in the in the demonstration models, there's been incentives that have been placed on transplantation. And finally, there have been um benefits that have provided better care for patients at the end of life.
▶ 0:43:50So from a valuebased perspective, DCI strongly supports these initiatives. It doesn't look at as a patient who just ends up on dialysis. It helps to take care of them along the entire journey that they may encounter. And so from that perspective, um, from a valuebased perspective, it is one of the best things we can do to take care of our
▶ 0:44:15Well, thank you. I now recognize the gentleman from Texas, Mr. Dogget, for any questions he might have.
▶ 0:44:20Well, thanks for the insightful testimony that all of you have presented. Uh, Dr. Wattnik, I guess I was a little surprised though, I know it's in your written testimony that we're only devoting uh about $19 per patient with kidney disease given the very serious impact of that disease in research funding. Uh can you explain why it is so vital that we increase the amount of research to deal with this
▶ 0:44:52Absolutely. Thank you very much for that question. So again, Medicare spends $50 billion dollar annually for endstage kidney failure. Um, and that is we in we reinvest about only 1% of that.
▶ 0:45:10And if you think about all of the life-changing um discoveries that have been made in other disease states, and we're happy, we're thrilled that life-changing medications and discoveries have been found for other disease states. We need to have that for kidney disease, too.
▶ 0:45:27We've actually had a communitywide initiative uh the transforming kidney health research initiative which included not just the American society of nefrology but others in our community the national kidney foundation this pediatric groups AKP and um and and the American kidney fund all of whom back the um report which I can submit if you like and it it shows specifically why investments in kidney disease can not only slow down the
▶ 0:45:57disease, benefit patients lives, but also save dollars. And we actually know, I happen to have right here, that, you know, in Texas there are over 5 million people with kidney diseases and um over 58,000 on dialysis. So, it's really relevant everywhere in this country. Thank you for asking that question.
▶ 0:46:18What what is the effect when uh we see research halted and cut and clinical trials cut? What's been the effect over the last year or so as that has
▶ 0:46:30Well, what I would say is kidney diseases in general over decade plus have actually been underinvested. We actually see the fewest randomized control trials in kidney disease specifically. Um over the last year, I know that there has been continued funding for a number of the the studies that we have, but we need more. And so I would just say anything more that can be appropriated would be highly valued and benefit patients before they ever have to set foot in a diialysis unit.
▶ 0:46:59You also mentioned in your written testimony u a set of solutions for modernizing Medicare. Among them was a reference to Medicare advantage and I believe uh we've heard other references in the testimony to Medicare advantage.
▶ 0:47:14Yeah. and the need to ensure that patients have access to the providers that they need when they need them. Uh that's a challenge that I've had a good bit of contact from other uh disease groups about the challenges in using Medicare Advantage sometime. As you know, the 21st Century Cures Act permits Medicare beneficiaries with uh instage renal disease to enroll in Medicare Advantage plans.
▶ 0:47:41Some have expressed concerns about the access issues that patients face with their plans. Can you speak to some of those concerns?
▶ 0:47:50Absolutely. So, um, whereas prior to 2021, there were very few patients with Medicare Advantage because of the 21st Century Cures Act, it's now h over half. And if you think about it, needing prior authorization to get life-saving dialysis makes no sense. So anything we can do to address that would marketkedly benefit patient access. Also making sure that patients have access to their providers.
▶ 0:48:18If you listening closely to what a wonderful relationship we have right at this table, you have a patient who is very um you know who has very great care from an amazing provider. Make sure that those connections can continue so that the network is wide enough with a Medicare advantage. The other thing I'll say it's very important about Medicare Advantage, we don't get the data that we get from Medicare fee for service patients in the same way.
▶ 0:48:45So, anything we can do to demand that Medicare Advantage plans provide the data so we can look at what's happening to patients can make a difference so we can look at their outcomes as well. Thank you.
▶ 0:48:57Thank you. Thank you, Mr. Chairman. Mr. Smith, you're recognized.
▶ 0:49:02Thank you, Mr. Chairman. Certainly, [clears throat] thank you to our entire panel sharing your perspective. it the entire uh ESRD issue is is uh a bit staggering I must say but I I think it shows that there's opportunity though to uh I think do better than what we see right now. I appreciate the visits that I've made to dialysis centers hearing from patients providers. We know the challenges that are out there. I represent a very rural district.
▶ 0:49:31Uh my district is larger than uh roughly 30 different individual states and uh we have 15 dialysis centers across my district. So obviously a good percentage of my constituents are literally hours away from a dialysis center and as you have articulated that the multiple visits per week for a good chunk of time per visit um it it really adds up and and it shows the
▶ 0:50:02the uh the need for uh home diialysis and I I hope that you know we even get to the get to the point where uh there's you know more uh mobile kind of dialysis even that allows folks to be in the workplace and just more flexibility overall.
▶ 0:50:22And and it's it's my hope that we can unleash newer technologies that number one will be good for patients and incidentally would be good for taxpayers as well realizing the the costs that are that are involved here. So, you know, there's different approaches I think that we can take, but more than anything, I hope, you know, we can pursue the policies that are good for patients and that uh, you know, patient safety obviously is is right up there at the top in terms of a priority.
▶ 0:50:53Miss Littleton, can you tell us uh a little bit more about the differences you experience between home peritineal diialysis and hemmoiialysis?
▶ 0:51:04Thank you. Um, with home dialysis, it allowed me to be able to um, be more flexible and be able to work and so did peritineal dialysis. I did that um, at home after work every day. It ran longer and it was every day. Um, and then when I was in center, it was a little bit more restrictive.
▶ 0:51:29um my schedule was a little more tight and I had to go by the schedule of the dialysis clinic and I wasn't able to make adjustments the way I'm able to make them being at home.
▶ 0:51:40And so regarding the home diialysis uh option uh any concerns there u that that we should be uh be mindful of
▶ 0:51:51with home dialysis. It's mostly like if there's a medical emergency that comes up and if you are able to handle that. Um I've done extensive training on it, if all else fails and I can't solve the issue, 911 is available and my mother is there with me and she knows what to do as well.
▶ 0:52:14Okay, very good. Um, what changes do you think we could make to further improve access to home diialysis for for patients like you?
▶ 0:52:24Um, I believe there just needs to be a lot more visibility about it, a lot more information. Um I think once patients have all the information about dialysis home dialysis they can make an informed decision on uh whether or not it will fit for them.
▶ 0:52:45Okay. Thank you. U providers um what is the incidence of say a a medical episode or a concern that might need medical attention say in a center compared to home diialysis.
▶ 0:52:59Dr. Taylor It can be very different patient populations and and you certainly want to be thoughtful in what patients dialize at home to make sure as Ashley mentioned that you a have someone who can help you if there is an emergency understand what warrants emermergency and who to call. But when you think about it unfortunately for so many years we focused on incenter or dialysis.
▶ 0:53:25We didn't take the time and educate patients that if you dialize at home, you're likely to live longer, you're less likely to be hospitalized, you're more likely to be able to work, and your quality of life is better.
▶ 0:53:37And so it may be a somewhat of a different population on insinerialysis, but ultimately our role as providers should be to problem solve and trust our patients that they actually know their bodies better than anybody else and they're going to be the ones who provide better care than than even we can in center. I mean, I think Ashley is a great example of that.
▶ 0:53:58Very good. Thank you. When my time is expired, I yield back.
▶ 0:54:01Mr. Thompson, you're recognized.
▶ 0:54:03Thank you, Mr. Chairman. Thank you for holding this [snorts] hearing and thank you to all the witnesses for being here, Miss Little John. I want to just add my voice to the chorus uh praising you for your courage and um I I just can't imagine going through uh what you've gone through. So, thank you for being here and sharing that with me. Um Mr.
▶ 0:54:25Chairman, um, thanks for the hearing, uh, pointing out the challenges that face Americans, but I want to point out that those challenges have been made worse with the passage of HR1. Our congressional Republican colleagues cut a trillion dollars from Medicaid.
▶ 0:54:44That coupled with their failure to extend the premium tax credits that help millions of Americans purchase uh their uh health care coverage have kicked about 15 million people off of their insurance. And it's important, I think, to point out that this was all done to give a huge tax cut to corporations and to billionaires across the country while at the same time adding $4 trillion to our national debt.
▶ 0:55:13So if Americans can't get health care coverage, they can't get their health care. It just it it's it's it follows. Uh so we're here to talk about improving kidney health through better prevention. And if Americans can't afford their health care, they won't get preventive care that could help them from getting more severe illnesses or more complications. People aren't going to stop getting sick, they'll just stop getting treatment.
▶ 0:55:41Sutter Health in my district tells me that one in three adults with diabetes have chronic kidney disease. One in seven adults overall have chronic kidney disease. And many don't even know that they have it. There are ways to manage some of the risk factors associated with CKD.
▶ 0:56:03But how are Americans supposed to do this if they can't get the insurance they need to help them afford the health care that they need? We're also here to talk about improving kidney health through innovative treatment. We can't develop innovative treatments and cures without research.
▶ 0:56:23UC Davis in my district has over 50 active awards for kidney research on key areas such as chronic kidney disease, dialysis, and related conditions. This administration, the Trump administration, is cutting research funding that could provide innovative treatment.
▶ 0:56:48administration's terminate terminated or frozen 27 different grants across our country specifically focused on kidney research. They've terminate terminated or frozen thousands of healthc care research grants in general. And this is crucial funding to find treatments and to find cures for the diseases that affect all Americans, everybody's constituents on this das.
▶ 0:57:18So I've got a couple of questions and if I could um please just give me a yes or no answer and the these are more focused towards uh the uh health care professionals. So uh Dr. Wattnik, we'll start with you and go to your left. Have we conf uh have we cured kidney disease?
▶ 0:57:39That's a goal. No.
▶ 0:57:40Yes or no? Have we?
▶ 0:57:43Dr. Taylor?
▶ 0:57:46Mr. Butler?
▶ 0:57:49No. We'll start with Mr. Butler and go back the other way. Does cutting funding for medical research get us closer to new treatments or new cures? We'll go back the other way. Uh, is more funding advisable?
▶ 0:58:10Yes. As we mentioned earlier,
▶ 0:58:16Should we have a chaotic funding stream for researchers?
▶ 0:58:27Is predictable funding for medical researchers the advisable way to go? Yes. Thank you. I'll yield back.
▶ 0:58:40Now I recognize the chairman of Ways and Means, Mr. Smith.
▶ 0:58:44Thank you, Mr. Chairman. I'm um pleased to have each and every one of you here today. Um uh we're holding this committee hearing because we want to make a difference in the lives of all ESRD patients. so that hopefully one day it is cured. I'm not here. This committee hearing was not scheduled for political purposes.
▶ 0:59:10It was scheduled to actually deliver real results for Americans. Today, only 15% of all ESRD patients in this country receive treatment at home. That is a low number given home dialysis patients have better outcomes and and faster recoveries from treatment. The health care system is failing.
▶ 0:59:36To connect the dots for many patients who would benefit from receiving treatment at home. I have seen this firsthand. I'm only here in Congress today because a very close family friend once convinced [clears throat] me, a son of an auto mechanic and a preacher and a factory worker from a small town in southeast Missouri, could make a difference in politics. He suffered terribly from ESRD.
▶ 1:00:07Eventually, the disease took his life and his battle with Eos ESRD is a solemn reminder of the important work this committee and this Congress must do to help Americans struggling with chronic All of us around this room have a personal connection to this disease.
▶ 1:00:29I feel strongly a responsibility to follow in his memory and to the hundreds of thousands of patients suffering from this disease to take action to ease their pain, improve the care that they receive, and above all give them hope. And you know, Miss Littleton, thank you so much for being here.
▶ 1:00:53Um, thank you for for your strength and your faith and your advocacy for this um, and your courage um, to stand up to this tough disease. Um, and also just for sharing your story. I I greatly appreciate that.
▶ 1:01:13Can you talk a little bit about how transitioning from an incenter to an athome dialysis impacted your your quality of life with with being able to work and care for your young students?
▶ 1:01:30Thank you. It was um a real easy transition because I had a good support team from my medical team to my mom at home. Um, I was able to make the transition quite well and it allowed me to be able to see my kids every day, which is the best part of my day teaching my little children.
▶ 1:01:55And I think I it wouldn't have been possible without um the staff that I had with DCI and their support and encouragement with it and their trust that I could do it on my own every day as well.
▶ 1:02:10That's awesome. One of the things holding back um patient access to innovation in kidney care is a recent Supreme Court decision that allows employers to discriminate against patients with ESRD and carve out their dialysis benefits.
▶ 1:02:30As we see more innovation in the kidney space, both with home and in center, these vulnerable patients first and foremost need coverage to access this care. We've even seen legislation introduced to to address the court's decision and to ensure access to employer coverage and patient care like my colleague Mr. Kelly's bill. Um Dr.
▶ 1:02:58Wattneck, as the former chief medical officer of a nonprofit dialysis provider, can you tell us the importance of addressing the uncertainty brought about by the court's decision and how we should balance patient access to dialysis treatment with their insurance coverage?
▶ 1:03:22Chairman, thank you very much for this question because this brings the conversation right back to the patients. So, if you're a person paying into an employer plan, you probably want to access that coverage for yourself and your family. And then if you get kidney failure, a monumental change you may not have seen coming, you probably still want to have access to those benefits, and you don't want your family to lose coverage.
▶ 1:03:49And what's more, if people with kidney failure in the broader scheme who've previously had private insurance transition to Medicare, it then actually raises questions about their likelihood to access the best therapy, kidney transplant because having commercial as your insurance as your primary and Medicare as a secondary payer is actually correlated at the population level with higher rates of kidney transplant. So, I guess I would just say that the most important thing is to make sure that patients have options and access.
▶ 1:04:20Thank you.
▶ 1:04:20That's great. One of my one of my top priorities when it comes to health care in this country is expanding access to affordable care in rural communities uh including those who may live far from a medical facility where they can receive kidney disease care. Um Dr. Taylor, your company operates more than 250 dialysis clinics across 30 states. Um, many of which are in rural areas and offer at home services.
▶ 1:04:51Can you speak to the challenges and opportunities in in delivering dialysis and kidney care in rural areas?
▶ 1:04:59Chairman, thank you for the question and yes, it is a challenge. Um but as a not for-profit organization um our motto our our our mission is care for the patient care for the patient is our reason for existence and rural patients in particular have have different challenges.
▶ 1:05:16Um our our company is committed to providing up to 25% of our clinics being o the only diialysis unit in a county because we want [snorts] to make sure that rural patients have full access to care which includes home which includes transplantation which also includes better care at the end of life.
▶ 1:05:38some of the challenges are and and one thing that we would ask is that um on a yearly basis that the adjustments to Medicare um help us meet the need in rural areas and that Medicare reimbursement reimbursement rates help us meet the care in in rural areas. But I think that that has been an area where where all of the diialysis organizations have experienced challenges.
▶ 1:06:01However, as a not for-profit, one of our missions is to provide safe, affordable care in in rural areas. Thank you for the question. So, Congress created the ESRD bundle to help contain cost and but we've also seen seen innovation suffer as a result. Um, bonus payments like the ESRD bundle add-ons may help incentivize new treatments, but only a handful of ESRD drugs.
▶ 1:06:31Uh, and just one medical device has been granted these bonuses in the past uh past decade. So, Mr. Butler, can you speak to how Medicare payment policy discourages innovation in ESRD treatments and care delivery and what impact that has on patients?
▶ 1:06:54So, in my remarks, I wanted to recognize that this transitional drug add- on payment adjustment was a was a good start. It was a recognition that innovation is needed uh and then there has to be a way to to to give it to But like many you know it has now four drugs have gone through this Teddapa program.
▶ 1:07:14The first two have been one taken off the market uh completely uh and the second a drug that was given breakthrough status uh by the FDA uh that was brought to the market for uremic paritis which is a very serious itching issue that dialysis patients uh suffer from uh wasn't used because tapa has this two-year payment cliff um beyond you know beyond two years they can no longer have any reimbursement meant
▶ 1:07:44the product wasn't used. I think physicians felt it was unethical almost to give it to a patient for uh for two years and then say I've got to take it away because there's no reimbursement. And I mentioned also that after the two years they take the dollars that were spent and they peanut butter it across all dialysis sessions. So today this same product is still available. There's 11 cents in each each time a patient gets dialysis that's included for uh Corsua is the name of the product.
▶ 1:08:15The product cost $27 per dialysis session. So you have to treat 250 patients in order to be able to have the money to uh to treat one patient and the average census is about 60 60 or 70 patients. It's just impossible for a diialysis provider to do that in a sustainable way. So, you know, what is in uh the KC Kappa legislation is to take those same dollars but just only give them to a provider when they actually use the product.
▶ 1:08:45This also shows the people who are investing in new therapies that there's a sustainable path for for payment uh for the drug. Again, it's the same bucket of dollars simply divided only when the product is used. And we think that will make a huge difference in in being able to encourage innovation in the future and keep these innovative products on the market and available to
▶ 1:09:11Perfect. Thank you. Thank you all once again for being here. Thank you, chairman, for hosting this committee
▶ 1:09:17Miss Chu, you recognize.
▶ 1:09:22Thank you. Uh, Miss Littleton, thank you for your testimony and telling your own story about uh your your uh kidney situation. And it reminded me of a story from my district in Los Angeles County, uh, California. I'm thinking of one of my constituents in Sierra Madre, who is one of the longest surviving kidney transplant recipients in the country.
▶ 1:09:48He received his lifesaving transplant decades ago and he's been able to maintain his health because he has consistently had comprehensive coverage through the ACA marketplace made affordable by the enhanced tax credits that Democrats enacted. So, um, Dr. Warick, I wanted to ask about what would happen if you didn't have it.
▶ 1:10:13I know that my uh constituent says that he's terrified because Republicans refuse to extend those tax credits. His premiums have more than doubled. And so he thinks that he won't be able to keep his coverage and he is terrified that he will lose the transplant that he fought so hard to At the same time, we're being told we need to cut health care coverage in the name of cost cost savings for the federal budget.
▶ 1:10:45Yet, in just one week, we spent over 11 billion dollars on a war with Iran that the American people did not ask for. Imagine if just a fraction of that were invested in preventing and treating kidney disease instead of this reckless war. So, Dr. Dr. Watnik, from your perspective as a physician, can you explain why stable, affordable health coverage is absolutely essential for patients like my constituent and what's at stake when that coverage is threatened?
▶ 1:11:16Thanks so much. Um, Congressman, Congresswoman Shu, I would start by saying it is wonderful for our patients to have stable coverage. I primarily practice at in the VA system and our patients do have coverage and that's wonderful. And um I also see that California has over six and a half million patients with kidney disease and over 32,000 with a kidney transplant. So wonderful.
▶ 1:11:44We're getting the care that we want to get for those patients. Stable treatment is critical. So I'm glad that you know anytime we're able to make sure that people have access to care, they have access to care that can prevent worsening diseases. people for chronic conditions, not just the individual that you mentioned, but anybody with kidney diseases, it's really critical for them to access health care for their health and longevity.
▶ 1:12:10And I would just say that for transplant patients, it's just like people with chronic kidney disease before they get on diialysis, if they do not receive their care, they can end up back on dialysis. And we just heard that the Miss Littleton's story as well. Thank you for sharing that. So, I would just emphasize that continued coverage is really critical. And so thank you for providing the opportunity to share that those thoughts.
▶ 1:12:34And uh you emphasized also that chron chronic kidney disease uh progresses silently many times and um in fact that's a very frightening part of it because it is progressing like this and by the time patients feel symptoms it can be irreversible. So Dr.
▶ 1:12:55Rottney, can you walk us through what you see in your practice when patients delay care, whether it's because they've lost insurance, can't afford out-of- pocket costs, or face other barriers? How much sicker are they when they finally come in? And how does that change their treatment options and long-term outcomes?
▶ 1:13:15That's a great question. And um we heard I believe from chairman Buchanan about the main causes of endstage kidney failure requ resulting in diialysis which are high blood pressure and diabetes. So we need to address these and by addressing these types of chronic illnesses it can slow down progression for example.
▶ 1:13:34So accessing care and working with your provider, making sure your blood pressure is under control, making sure you're getting the right therapies, and there are new therapies for a diabetes that help to slow down chronic kidney disease as well. All of these things, if you're accessing care in a regular basis, can help to slow down kidney disease. And also detecting kidney disease is important.
▶ 1:13:56there was a a commercial on at the Super Bowl about actually detecting uh protein in the urine which is a way to detect kidney disease. So the nice thing is that we're starting to see that it's important and putting it out there to the public how it is critical to access care recognize if you have kidney disease and then to get it treated on a regular basis to slow down progression hopefully avoid uh kidney failure. Thank you.
▶ 1:14:25Thank you. I yelled back.
▶ 1:14:27U yes. Pursuant to committee practices, we now proceed to 2:1 questioning. Uh Mr. Kelly, you're recognized.
▶ 1:14:35U Chairman, thank you so much for holding this hearing and and also Chairman Smith, thank you. Um so, Miss Littleton, I was reading your story. Uh in my life, uh there was a lady when I when I got married to my wife in 1973. It was her aunt Mary. And I never knew what Aunt Mary went through in order to continue her active life in the community.
▶ 1:15:01And they she and her her husband Don never had any children, but she dedicated her entire life to being on different community activities. She either chaired them or the president of it. And I'm so I'm reading your story and I'm looking I said, "My god, this is the same thing Aunt Mary went through." And she never ever complained about it. She got up, she couldn't get the work done in in Butler, so she had to go to Pittsburgh. she followed your same routine, getting up at 4:00 in the morning, going to Pittsburgh, and coming back in time to her hometown so that she could chair whatever meeting was taking place.
▶ 1:15:31And when I think about her and I think about the the the uh commitment she had to her her town. Now, she lived to be 88 years old, which I thought was incredible with everything she went through. So, everything that you're going through and you're getting ready to go back and teach school after you have go through this treatment. Um, so I sit by Dr. Murphy and when I'm with Dr. Murphy, I'm always thinking, okay, so what can we do? What can we do? What can we do? Uh, how do we address these things? And I I think Mr.
▶ 1:16:01Davis and I are on a bill together called the Restore Act, which is incredibly important. And thank you, sir. Uh, but for all of you, you all are in some part of my memory of Aunt Mary and what she went through and how she was able to live a normal life, a very active life through her treatment that she got. Um, I'm really amazed with what we can do. And I I I really wish if we could if we could really concentrate on policy and not politics.
▶ 1:16:29I would love to actually hear the conversations going back and forth. The one thing I know, it's always about money and there's just never enough money. And I get that because I'm from the private sector and it's true, there never is enough money, but you try to make do with what you have. Uh, so as I said, sitting by Dr. Murphy. I listen to him because he does this stuff every single day.
▶ 1:16:50So, as much as I'd like to talk to you and I'd like to talk to you more about my my aunt Mary, she was she was the just the greatest person I've ever been around in my life and so dedicated to her community. Even though even though she went through this, it never stopped her from participating in her community and being a positive part of her community. But when it comes to the medical end of it, I'm an automobile dealer.
▶ 1:17:12I know about cars and trucks and I know about preventative treatment and I know about all these different things when it comes to a machine and I try to relate that to we are all machines to a certain degree and we have failures at certain points and how is it that you address that failure. So I am going to pass the rest of my time on to Dr. Murphy who spent his whole life saving lives. So doctor if you would please take over. No pressure. Um thank you guys for coming and thank you Miss Lson for sharing your story. Um, I did this for years.
▶ 1:17:42I did transplants. I did took out kidneys and gave them to people. And I tell you, there's nothing more beautiful than seeing somebody go home and get off dialysis because they look different. They act different. And they have a much greater greater greater life uh awaiting ahead of them. Um, I think it's great for you guys to come in and actually talk about the economics of this because some folks think that there is money that the money spot just goes on and on. I haven't found that spot. um love to find that spot someday and love to be able to find money for everybody. Um Mr.
▶ 1:18:12Butler, c can you just I I think it's really great for people to understand what this bundle means that uh dialysis centers get paid one fee for everything. And will you explain if you don't mind just in a in a minute how that has caused problems with being able to really grow innovation, take care of patients better, the fact that you limit this money and I will say you just before I say this, this is what Medicare for all looks like.
▶ 1:18:38Just so my colleagues across the aisle looks like with limiting money for a bundle. That's what Medicare for all looks like.
▶ 1:18:44Thank you for the question, Congressman. So for fee for service patients, a dialysis provider gets roughly $280 for every time the the patient sits in the chair, if you will, uh in the diialysis center. And and from that they have to do skilled uh care. Everything comes out of that pocket. the drugs um everything comes from that uh from that bundle.
▶ 1:19:09So you know the idea that you bring in a new innovative product uh our product uh vapio is to to treat anemia in patients. It's based on Nobel prizewinning science. It is highly uh unique. We just presented data uh a couple of weeks ago at a conference that showed that if every eligible patient was treated with our product, there's the potential to save almost $2 billion in hospitalization costs, but that isn't part of that bundle.
▶ 1:19:38So, you know, the the diialysis providers have to decide how to allocate care based on the $280,
▶ 1:19:47right? So they get a piece of this pie and you say you spend it as best as possible. But if there's a new drug that's wonderful and innovative and great, you can't afford it, you can't access it.
▶ 1:19:56And that's why Teddapa was created that doesn't um that that was a great start. It doesn't do the trick.
▶ 1:20:02So I mean I think that's where the future is. So am I how am I going to just you five minutes left?
▶ 1:20:07Um okay, thank you. I I think it was also a good point. I think Dr. Watnik, you brought this up about insurance companies because as soon as if you're 45 years old, you have commercial insurance. They want to do whatever they can. I went on a little tirade about insurance companies a few weeks ago. They want to do whatever they can as soon as possible to kick you off their insurance to put you on Medicare. Um I I wonder if you guys could talk a little bit, you know, everybody's, you know, saying talking about home dialysis, home diialysis. Not everybody's a candidate for home diialysis. I think that's important for the committee to understand. Dr.
▶ 1:20:37Watton, can you just briefly tell me who's a candidate, who's not a candidate, and why is that
▶ 1:20:41Yes. Thank you so much. We we not only talk about this with our patients, we teach it to the people that need to know it to for the next generation. So um if you ask the first question is you have to ask patients if this is what they're interested in,
▶ 1:20:56If you ask them what they're interested in, there are survey studies showing that somewhere between 40 to 50% of patients actually show interest in doing home diialysis and there's a gap right now about 15% of patients do home diialysis in this country. Then you have to say
▶ 1:21:13does that include parinal and hemo
▶ 1:21:14that includes peritineal and home hemodialysis about just under 2% home heo and the rest is peritineal dialysis and then you have to say do you have the capacity to do this in your home
▶ 1:21:27peritineal diialysis requires a relatively sterile environment where there are not going to be pets or toddlers walking in and out as you're doing a sterile procedure
▶ 1:21:36also it may not be something that you can physically do you may require but do not need a home helper for example if you're very frail. So then right there there are fewer patients that may be eligible. However, there is still a large gap.
▶ 1:21:50Do do you think it is because nefologists don't recommend it? What do you think the barrier is?
▶ 1:21:56So the things I mentioned are one of the barriers. There there are a few other barriers. So first of all, education for patients is a huge barrier. We actually do studies about this. The second thing is there are nefologists that are not as well-versed and may not actually talk to their patients in depth. That has been improved. If you look at the educational requirements um 20 years ago, they're different then than they were now. We were actually involved in making those changes.
▶ 1:22:22So training programs are now requiring, but nonetheless, if you don't have familiarity, you're not going to push that as hard. So there is an education barrier from the providers as well. Those are probably the top three lists of barriers. um and anything that we can do in terms of kidney disease education benefit.
▶ 1:22:38Right now people get six treatments um of education that are paid for at stage four chronic kidney disease, but if we were to extend that to stage three a little earlier and stage five a little bit later, then you can actually pay for education that can be beneficial for patient.
▶ 1:22:54Great. Thank you. I want to pivot a little bit to transplant. But Miss Littleton, do you mind me asking are you you're on home dialysis?
▶ 1:23:00Is that what you said or you're not? Yes, I'm on home I'm on home hemoialysis
▶ 1:23:04on on home hemo. Okay. And you feel like you're doing that well. You don't have any qualms about it.
▶ 1:23:08Yes. I mean, I feel like I'm doing it really well. I like it.
▶ 1:23:11Well, I I will tell you I've had discussions because this is what I do. I still do it with with patients that would you be interested in and frankly and I don't want people in the committee to get the wrong impression. Some people are terrified of that and you can't discount that. You can't try to put a square peg in a round hole. So, I I I want to turn Dr. Taylor, if you don't mind, I want to flip to transplants because I I hope both you and I would agree that's the hopefully the ultimate goal to quote cure this. You know, God gave us so many nephrons, etc., etc.
▶ 1:23:40What do you feel the biggest barriers for transplant are these days? Because I think um especially in different communities, uh we do as many as we can, but it's a real problem.
▶ 1:23:50A concern I have is from a regulatory and policy perspective. Um I was a medical director of a transplant program. we were a smaller program. When you accept kidneys, as you know, there's maybe your A kidney and then there's your B kidney.
▶ 1:24:05there's a higher likelihood that a B kidney will be discarded because if you have a bad outcome, you could get audited or have have some sort of penalty. So, you know, one of our recommendations would be would be to allow those types of kidneys to be used more freely. Um decrease some of the um some of the regulatory control in those. to make sure that they're that they're allowed to benefit patients.
▶ 1:24:29Even if you look at a B kidney, say compared to an A, a patient who is on diialysis versus a patient who receives a kidney is going to live longer, be hospitalized less frequently, typically have a lower total cost of care,
▶ 1:24:43get back in the workforce,
▶ 1:24:44get back in the workforce, have a better quality of life. Right. So, I I do think that's one thing. And I'll just I'll just say very briefly, going back to the question you asked, Dr. Watnik um unfortunately the wheels were greased from a policy and financial perspective to put patients on incenter diialysis
▶ 1:25:02that that's where the incentive sat and so what we'd like to see is more incentives like with with the uh kidney transplant model where where nefologists and transplant programs receive financial benefit from improving transplant. I I just will tell you in my community we're you know again I did transplants and donors for for years and years and years. I think our our nefrology community is very very protransplant.
▶ 1:25:27We're in a difficult challenging community just with a higher proportion of African-Americans who are less likely to give living related donors which is what we want. But I think you know that's the holy grail is to be able to get people off dialysis and to give them the transplant. Thank you Mr. Chairman. I'll yield back. Thank you guys for coming.
▶ 1:25:45Mr. Mr. Evans, you recognize.
▶ 1:25:53Thank you, Mr. Chairman. I'd like to thank the witnesses for coming here today. Addressing kidney disease is a real serious concern. As we have all heard, kidney disease has greater impact on the black community and poor communities that have a harder paying for the I know that this committee should be able to work together
▶ 1:26:23to improve treatment options and access, but I don't think that my Republican colleagues are serious about actually doing something like this. They continue to support the president's dismantling our health care system.
▶ 1:26:45Because Republican policies, more Americans are being focused to choose between health care, rent, and food. Republicans need to start getting serious. They need to start actually working together for their constituents. I want to say that this cannot be done by any single individual. It can only be done when we function together.
▶ 1:27:14It is only through that action can we make the type of change that we need to make. No longer can we fool anyone about the challenges unless we are ready collectively to function together. So I want to stress though I hear all the various concerns that are stated. We know that this is a challenge. We know that we need to function together.
▶ 1:27:42That is the only way we will address this challenge and the challenge is not unique to any one particular group. It is the fact that if we don't get a message across that we are ready to take it on. So I urge my colleagues to join together and I yield back, Mr. Chairman. Mr. Miller, you're recognized.
▶ 1:28:11Thank you, Mr. Chairman. I'm really really pleased to be here today as our committee focuses on this particularly vulnerable population and the chronic disease that I've spent so much of my work in Congress addressing individuals who are living with endstage renal disease.
▶ 1:28:31When I first immersed myself in the Kim kidney community, very quickly I learned that one of the biggest issues facing the ESRD patients is the lack of innovation in dialysis 25% 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. Thank you.
▶ 1:28:55to with my colleague Terry Su 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 highquality care and timely access to innovative treatments by extending innovation payments for three years, providing Medicare Advantage parody through direct facility payments and correcting CMS errors that previously failed to account for rising
▶ 1:29:25labor and supply costs. Mr. Butler, given your 25 years of experience advancing pharmaceutical care for renal patients and your leadership in Akibia in developing therapies, can you explain how the kidney care access protection act would help sustain innovation in the ESRD treatments and ensure that the patients continue to have high access to highquality cuttingedge care.
▶ 1:29:53Congresswoman, first, thank you so much for your advocacy for 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. Um, I'll give one uh statistic. I heard I heard the number this morning that there are,300 latestage clinical programs in development for oncology. There is one for patients on dialysis.
▶ 1:30:20So 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.
▶ 1:30:35So, you know, has that same, you know, kind of built-in discounts to the so you're controlling But when you think about investing, uh, you know, if 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 there there's in innovation in prevention, in CKD.
▶ 1:31:04when you start dialysis, you deserve the same uh the same kind of innovation. And the the 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 uh and it will help patients in the end and and it's it's uh you know we're very very supportive of that. Thank you.
▶ 1:31:25Thank you so much. Miss 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 grownup. So I have very fond memories. Thank you for being here and sharing your experience. As someone who's utilizing staff assisted home analysis dialysis, your perspective is incredibly important as we think about how to better support patients living with ESRD.
▶ 1:31:55I'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 to you is from your experience, how has access to staff assisted home dialysis impacted your quality of life?
▶ 1:32:24And what would it mean for patients like you if Medicare more consistently covered and supported this option for those who need assistance to safely dialize at home?
▶ 1:32:37Thank 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, um, I'm able to do it and not be afraid of anything going wrong because I know that I have backup there that, um, are very accessible to me. They're just a phone call away.
▶ 1:33:03Thank you. It it it's the fear and, you know, the insecurity of being afraid of doing something. Thank you so [clears throat] much. I yield back. Thank you, Mr. Fitz.
▶ 1:33:13Thank you, Mr. Chairman. Thank you all for being here today. Chronic kidney disease and endstage renal disease are devastating for patients who are often facing several chronic conditions. ES RD patients are largely considered to be the sickest in the nation. uh with the need for many hours of dialysis treatment, the alarming statistic that one out of 11 uh ESRD patients discharged from the hospital will pass away within 30 days.
▶ 1:33:42Dialysis is essential to so many of these patients who do not have access to a kidney transplant. In my home state of Pennsylvania, there are over 18,000 Medicare patients on dialysis. This according to the National Kidney Foundation. Um very proud to support the efforts of uh my friend and colleague Mr. Kelly from Pennsylvania on this committee um and many uh of my colleagues as well in supporting the Restore Protections for Diialysis Patients Act. As has been discussed, uh this is bipartisan legislation.
▶ 1:34:11Uh it ensures that individuals with the SRD uh will continue to have access to private health care and provide necessary protections of the Medicare trust fund. This also means that dialysis patients can continue to receive their necessary life sustaining treatment without disruption by maintaining access to private insurance coverage for the full 30-month coordination period before transitioning to Medicare. Uh question for Dr. Watnik.
▶ 1:34:40uh in your experience uh practicing as a kidney doctor uh when dialysis is not accessible to patients or when there is uncertainty in coverage I know you've discussed this briefly but if you could elaborate what you know what the the manifestation both direct and ripple effect is on the patient
▶ 1:34:58thank you for that question and you mentioned the numbers of patients you have on diialysis there's a lot of patients upstream in Pennsylvania too we're talking you know more than two million who are also at risk for this and these People need to have comfort at a time where um there's so much uncertainty in their health.
▶ 1:35:17And so um for people who are again working hard, paying into their plan, they deserve to have the coverage and have um confirmation that that is not yet another worry they have to have on top of their health. And again, as I mentioned, if you then get kidney failure, which is even more of a monumental change.
▶ 1:35:42And again, sometimes it can be predicted and sometimes you don't see it coming, you don't want to just have to worry about yourself and your benefits. You potentially could lose benefits for your family and that can be one of the most worrisome things of all. And then on top of that, if you're looking for your best therapy, as Dr. Murphy has mentioned which is kidney transplant.
▶ 1:36:04Um losing access to your um private insurance coverage and benefits can also substantially impact the ability to continue care along that journey as you try to get transplanted. I hope that addresses what your question
▶ 1:36:18Yeah, thank you Dr. Rodnik. Uh Mr. Dr. Butler. Um there's been great in innovation in ancology and many other uh diseases uh in the past several years while treatment and outcomes for kidney disease uh have not kept up. Um as a leader in developing therapies for uh diialysis treatments, what do you see as the reasons why kidney care is not kept
▶ 1:36:42It's wonderful that there's so many innovations for these other disease areas. I think everyone on the panel agrees that that that we're very excited to see that and I think we're in an age of amazing medical advances. As I mentioned, I think in dialysis care particularly, it is the the payment policy that drives that. I I I just put myself in the shoes of a patient who has this uremic paritis, this horrible condition, and a breakthrough product was approved by the FDA.
▶ 1:37:12And yet, you know, for a small dialysis provider to provide this risks the the survival of the dialysis center and so the patient goes without and that is directly related to the payment policy. So the idea that that you know what is in uh Congresswoman Miller's bill that you can have dollars follow the patient physicians then can provide that care that the patient needs.
▶ 1:37:40Thank you Mr. Butler. Thank you all for your time. I yield back.
▶ 1:37:44Mr. Davis, you're recognized.
▶ 1:37:47Thank you, Mr. Chairman, and I want to thank you and ranking member Dogget for calling this hearing. And certainly, I want to thank all of our witnesses who have been with us this afternoon.
▶ 1:38:02I'd also like to thank Representative Kelly for joining with a group of us, Representative uh Del Bin, Congressman Miller, and Congresswoman Su and the Congressional Kidney Caucus who've all worked together and are working together on behalf of patients.
▶ 1:38:27And I think it's an example of what can actually happen when we work together and with the idea that yes, there are problems, there are needs, but there are also solutions and those solutions can in fact be met.
▶ 1:38:55and that's why when we look at kidney disease, I say it's not just a health issue, but it's an issue of inequality as is access to care and many other social determinants of health. So, it's really something that all of us work on and like to do.
▶ 1:39:21So, I approach it from every angle that I can and I'm pleased to be working with my colleagues on bipartisan legislation to address the full extent to of kidney disease.
▶ 1:39:41We are working to pass protection for living organ donors so that those who give the gift of life won't have to face uh insurance We're working to expand kidney disease because the best cure is prevention, our communities about the vital importance of early testing, diet,
▶ 1:40:14that can all take place before kidneys I work with two I work with a lot of organizations in my community but there are two that I will cite. One is something called the gift of hope which helps individual patients and their families try and find kidney matches and of course they do outstanding work.
▶ 1:40:44The other one is a every year they have something called transplant Sunday. And that's because the pastor of the church, Reverend Richardson, has had three successful transplant experiences, two hearts and a kidney.
▶ 1:41:08And of course, even if you don't believe in faith, once you attend one of their services where everybody there who has given an organ or everybody there who has received an organ will come up and testify about what their experiences have been.
▶ 1:41:33And you know, and I think that's why Congressman Kelly [clears throat] and I are leading HR 2199, the restore protections for dialysis patients act. And so we're urging everybody to join. But Mr. Littleton, let me ask you.
▶ 1:42:01a match or kidney has not been easy. Uh what do you suggest that we do to keep working to make that possible?
▶ 1:42:18I think just getting the information out there about someone needing a kidney. For me, an example is I've set up like a micro website and I've got uh bumper stickers on my car that people in the city have seen and have posted online. Um, and I think just getting out there that uh is needed and what the process is.
▶ 1:42:44That's the number one question that I always get asked is what's the process to donate? And so I think if more people are aware of that, they might be more willing to donate.
▶ 1:42:57Thank you very much. Your your efforts are super important and quite inspiring. Again, Mr. Chairman, thank you for this hearing. It is very important and and I
▶ 1:43:09Thanks for your leadership.
▶ 1:43:12Uh Mr. Mr. Moore,
▶ 1:43:14thank you chairman. Uh thank you witnesses for being here. We've heard so much from Dr. Dr. Oz and Secretary Kennedy about their desire to curb chronic disease in America. And this committee is supportive of those goals to alleviate Americans pain and suffering and relieve pressure on our health care system. While we can't legislate necessarily out of a chronic disease, this body can certainly evaluate the incentives or even the disincentives that prior Congresses have established on whether or not we can spur innovation and give Americans the tools they need to lead healthy lives. Dr. Taylor.
▶ 1:43:45Uh, dialysis sessions today are shorter and less frequent than when our parents or grandparents would have needed them, but it remains an extremely costly and draining treatment for kidney patients. 90% of all diialysis patients are Medicare beneficiaries. Medicare covers them regardless of age. Yet, Medicare reimbures dialysis providers at rates below the cost of providing care. Um, not uncommon, but still a bad formula. Uh, m Mr.
▶ 1:44:12Taylor, where do you see areas for improvement in the ER ESRD bundle to better spur innovation?
▶ 1:44:21Well, that it is a great challenge and as a not for-profit, we don't have to answer to shareholders and so we're able to make long-term decisions um um to give us a strategic advantage. However, um reimbursement rates for Medicare patients can can at times be below how much money we're spending to care for a patient. Additionally, the yearly updates may not be enough to for us to make up the difference on a year-to-year basis.
▶ 1:44:50There has been a challenge with um employing the appropriate staff, especially after COVID. So, we are competing with hospitals. we're competing with maybe the local um Walmart, our our patient care technicians.
▶ 1:45:05And so um that is one of the challenges that we we experience if reimbursement isn't adequate for us to be competitive in the employment environment in a community, we will we will have the the risk of losing and not being able to provide care. And so, um, you know, I think for us, we're always going to try and find a way to provide care, but we have to do it in a sustainable manner.
▶ 1:45:33And if reimbursement doesn't exist or it's not adequate for us to keep a dialysis unit open, unfortunately, there are times when we have to have to close a unit. My our big concern is that rural communities are particularly at risk.
▶ 1:45:47Yeah, makes sense. Thank you so much, Dr. Taylor. Dr. Dr. Watnneck. Um, ESRD care is the largest item on Medicare's receipt every year, over $50 billion. We spend seven times per ESRD patient than we spend on the average Medicare beneficiary. We know it's expensive and we know it can decimate quality of life, but we do not screen at a meaningful rate to sort of get out in front of it. How can Congress better align incentives to incentivize education and early detection?
▶ 1:46:18Yeah, thank you very much for your question, Congressman Warren. I would um continue to emphasize that first of all, there has to be education upfront. So, if you're talking about people who um are coming for primary care appointments, we need to make sure that our community is partnering with primary care and giving incentives to make sure you're doing appropriate for pe including for people who already are seeing um their providers. Some of them don't know to screen for kidney disease.
▶ 1:46:46So making sure that there's a campaign to educate that for people with chronic illness already such as hypertension or diabetes, they should be screened. Um that is incredibly important. Um, also we know that if you have patients already with chronic kidney disease, if you're providing education, you're more likely to have somebody to choose a best option for them, which both can improve their quality of life, improve their ability to contribute to the community and
▶ 1:47:16may save money. For example, if they are able to get a a kidney transplant before they even start dialysis called a preemptive kidney transplant, that's optimal for their health, quality of life, and for the taxpayer. And also, if they're unable to get that transplant, um if they do have access to all the therapies available like home dialysis, that is also something that potentially can improve their quality of life and also is less expensive.
▶ 1:47:41So that kidney disease education benefit, passing that um and making it more extensive not just for stage four but for stage three and stage five so he can educate more patients. That would be another benefit. Thank you.
▶ 1:47:54Thank you so much the chairman. I yield
▶ 1:47:56Mr. Horford, you're recognized.
▶ 1:47:59I thank the chairman and the ranking member uh for holding today's hearing. And I want to start by sharing a story from my district that underscores the intersectionality of health care access. Last year, patients receiving life-saving dialysis treatment in Permp, Nevada, which is the rural part of my district, nearly lost access to their rural dialysis center. Not because of a medical failure, but because they risked losing transportation to get there.
▶ 1:48:29Perump Valley Transportation, the clinic's primary partner for getting patients to and from dialysis appointments, was facing a potential shutdown due to unresolved payments from the Nevada Department of Transportation and the Department of Veterans Affairs.
▶ 1:48:46The VA's non-emergency medical transportation program provides eligible veterans with safe, reliable transportation to the VA and authorized nonVA medical appointments for patients who must receive dialysis three times a week to survive. Losing that ride was not just an inconvenience, but rather a lifethreatening disruption.
▶ 1:49:11After some intervention, Perump Valley Transportation, the Nevada Department of Transportation, and the VA were able to come together and preserve the partnership. That's a good thing. And patients continue to receive transportation to treatment. The clinic remains open and the community maintains access to care. However, this experience underscores that healthc care accessibility remains a persistent challenge, particularly in rural communities.
▶ 1:49:40Accessibility must be viewed through multiple policy lenses. affordability, workforce shortages, supply chain, and the list goes on. It cannot be viewed in isolation.
▶ 1:49:55So, while there's much to be discussed today, I would be remiss if I did note that these challenges are happening just months after my colleagues on the other side made a decision to pass their one big beautiful bill as it's referred to. But in my district, it has worsened healthc care access across our entire health care system.
▶ 1:50:25in rural and in underserved communities. Analysts warned that the legislation could expose over 300 rural hospitals nationwide to potential potential closure, including two in Nevada, Battle Mountain General Hospital and Humb Humbult General Hospital, while putting many more at risk of reducing critical service lines. So, with the time that I have left, I want to focus on another urgent issue.
▶ 1:50:54Persistent racial disparities in kidney care. According to the National Kidney Foundation, black Americans are three times more likely and Hispanic Latino Americans are one and three times more likely to experience kidney failure compared to their white American counterparts. These disparities reflect deeper systemic barriers to prevention, early diagnosis, and consistent access to treatment. Uh, Dr.
▶ 1:51:23Wadnik, I have two questions for you. First, what policies could Congress pursue to strengthen rural health infrastructure while also addressing disparities in kidney disease that I listed? And second, what targeted federal interventions have proven most effective in reducing kidney disease disparities among black and Latino
▶ 1:51:48Thank you for that important question. I'll just add a little bit in terms of statistics and then continue to answer some questions. Um, we've heard a lot about home dialysis today and we know that home diialysis rates have increased across all different groups of people. However, we still know that black patients have lower percentages on home dialysis than do white patients, although both have continued to increase. We also know that black patients are weight listed at lower rates, women are lower weight listed at lower rates than men.
▶ 1:52:18And so, we have to do better for all of those things. So, you're you're had a couple of questions here. First, in terms of um rural access and health disparities, first and foremost, we need to make sure that we're getting the care to the patients.
▶ 1:52:34Making sure that we have access to affordable health care for individuals and making sure that people know that patient people should be screened appropriately if they have risk factors, for example, high blood pressure or diabetes, which all groups of people in this country do unfortunately suffer from.
▶ 1:52:53So that's incredibly important in making sure that you have individuals who also are care providers or partners that people can relate to and there's actually good literature about that in terms of accessing better care for people in different groups, making sure that they have care providers that are providing care. The other um question that you brought up was about um targeted interventions to improve all of this care.
▶ 1:53:18Um, one thing that hasn't come up too much is making sure um that there are interventions that Congress can um press in terms of levers to make sure we have access to kidney transplantation. And I would just say that um for example, we um uh Congressman Miller along with Congressman Delben just um introduced the expanding support for living donation act. So, this is a way that um people can make sure um to access care.
▶ 1:53:48Um thank you. I'll stop there. I'm sorry.
▶ 1:53:50Thank you, Miss Tenny.
▶ 1:53:52Thank you, Mr. Chairman. Thank you to the witnesses uh on this very important uh issue. Endstage renal disease is one of the most devastating diagnosis a patient can receive. More than 800,000 Americans live with ESRD. Today, 1,200 in my district uh h are suffering from ESRD. Uh despite the contin continuing just 1% of the Medicare population, ESRD patients account for 7% of all Medicare expenditures, more than $50 billion annually.
▶ 1:54:20And yet after more than 50 years, approach to care and treatment for these patients looks remarkably unchanged. This is largely attributable to policy missteps and benefit design failures that need to be addressed. Um and I just want to and that's why I think we're what we're trying to accomplish in this hearing is helpful. Um on the prevention and awareness side, um it seems that too many patients arrive at ESRD because they either didn't know that was coming, their doctors didn't know.
▶ 1:54:47Uh part of the solution is how do we raise awareness at the provider level so doctors know uh that the these patients are driving toward this type of kidney failure in the first place. And I know my uncle suffered from kidney failure for many years and spent many years going to going to kidney dialysis. Uh but over 42% of Americans over the age of 70 have some form of chronic kidney disease and nine and 10 adults with chronic kidney disease don't know they have it. So here we are a diagnosis issue.
▶ 1:55:15Um and apparently there is a simple way to find out through a blood or urine test. Uh and these are relatively simple and inexpensive and widely available. And I just wanted to maybe Dr. Taylor, you mentioned this earlier, but maybe if you could just drill down a little bit from a clinical perspective.
▶ 1:55:31What do physicians need to do to more effectively integrate the um multiple disciplinary multiple disciplinary care that we need in order so nefologists other primary care and everybody's managing this patient in advance before we know that something like this is happening so that we we minimize or at least prolong the chance that ESRD is going to occur.
▶ 1:55:53Congresswoman, thank you for the for the question. One of the most important things is identifying the underlying risk factors. So, diabetes and hypertension are very common. Um, but making sure that primary care physicians and nefologists are screening appropriately, um, checking lab tests, checking urine test to make sure you're identifying the patients that are at highest risk.
▶ 1:56:15Unfortunately, and and and I'll be honest, um, as a nefologist, I make a lot more money when someone ends up on diialysis than I do caring for a stage four and stage five kidney patient. Unfortunately, uh patient with chronic kidney disease, stage four and stage five, so advanced kidney disease may cost Medicare 35 maybe $40,000 a year. When they start dialysis, it jumps up to about 90 to $95,000 a year.
▶ 1:56:43So unfortunately, and I mentioned this earlier, the incentives financially and from a policy perspective have been set up so that as a nefologist, you make more money and the wheels are greased to put people on dialysis. It's a historic that's why we have so many patients on incenter diialysis and so what we
▶ 1:57:02that's a disheartening thing to hear
▶ 1:57:04Well I you know I was asked to testify and to answer honestly.
▶ 1:57:08Yeah. No I appreciate that. Um well so let me ask you since uh when we deal with the TDAPA the transitional drug add-on payment adjustment. Is there would it would be better if that were patient driven because now I understand it's it's facility driven. So patient driven based on an individual patient's needs. Is that a way that we could um that we could actually help deal with that? You know, the minimizing the cost on that and is that something that maybe other members on the panel might weigh in on? You can weigh in as well, but maybe Mr.
▶ 1:57:38Butler, you want to weigh in? I
▶ 1:57:39I'll I'll be brief. I I I I'll go back to what I was where I really started. Um making sure that we prioritize from a policy and final financial perspective um going upstream, providing care to patients before they ever need diialysis. And so that you're not talking about Teddapa for ESRD patients. That's where really as a society and for patients like Ashley, that's where we benefit the most.
▶ 1:58:03Right. And Mr. Butler, I don't know if you want to say something about the No, thank you. A new approach to the TDAPA
▶ 1:58:09That's correct. And and you know, right now it it it uses this bucket of dollars and gives it by facility by each dialysis session rather than when a a patient uses the the drug. And you know there's a new a product that's a tapa product defend cath now that's for a smaller portion of patients only those with a catheter that significantly reduces bloodstream infections.
▶ 1:58:32Those patients should be able to get the drug and the diialysis provider should be paid when they use it for that individual patient. We think that will be a significant uh advantage to uh to allowing patients to access innovation.
▶ 1:58:47Thank you. because I think there's a bipartisan group of members who would support actually a tax credit up to 50%. Uh to leverage this to incentivize the development of of of these pro these cures for rare kidney diseases, especially dealing with this issue right here to save costs save costs on Medicare, but thank you so much to the panel. My time is expired.
▶ 1:59:07Mr. Yakob, you're recognized.
▶ 1:59:09Thank you, Chairman Buchanan, for holding this hearing today and to our witnesses for being here. Chronic diseases have become far too common in the United States and they have a significant impact on patients as well as their families. Chronic diseases lead to a lower quality of life, higher health care cost, and lost economic opportunity. Overall, chronic diseases account for about 90% of health care spending in the United States each year.
▶ 1:59:34Endstage renal disease, also known as ESRD or kidney failure, is one of the most expensive chronic diseases to treat. ESRD patients are about 1% of Medicare, but only only about 1% of the Medicare population, but they account for 7% of all Medicare spending, which is over $50 billion each year.
▶ 1:59:55One of the best ways to lower health care costs and improve patient outcomes through innovation is what we need to ensure that we are supporting policies that drive innovation and allow patients access to groundbreaking treatment Dr. Dr. Watnik, in your testimony, you shared the importance of ensuring patients have choices in their diialysis care and not limiting treatment options to incenter diialysis. Can you share some of the benefits of home diialysis?
▶ 2:00:24Congressman Yakam, thank you very much for that question. I've been a huge home diialysis champion for a long time. Patients should have access to all of their options. So, the question of why is home diialysis beneficial? If you are sitting with your physician talking about how would you prefer to have home dial, how would you prefer to have diialysis and say would you prefer to have it at home or would you prefer to have it in center? I'll tell you the answer I get from most of my patients which is I would prefer to have it at home if it is possible.
▶ 2:00:52So let's think about it from the patients perspective. If you're at home you can be more flexible just like we heard with Miss Littleton in terms of being able to continue with your job and continue with your life. If you're at home, you can actually be planful. We also know from studies that um quality of life is probably improved for patients with home diialysis. If you have kidneys, they function 247.
▶ 2:01:18Incenter hemmoiolysis for the most part is three times a week for maybe four hours each time. At home, it is a more continuous therapy. We also know that pe people on home dialysis have had documented higher rates of transplantation and we also know that kidney transplantation improves survival, improves quality of life and also decreases taxpayer burden. So for all of those reasons um it is really important to make sure that patients understand that they have access to home therapies. Thank you.
▶ 2:01:48Of course in in my district a large portion of it is rural and our rural communities constantly face hurdles in accessing health care. Uh can you talk about how home diialysis benefits patients living in rural communities across this country?
▶ 2:02:02Absolutely. So again, think about the drive and we just heard this from several of the other members. If you have to come to a diialysis facility, that alone taking four hours three times a week, that's a part-time job that you never signed up for. Think about having to travel one, two hours. We heard about a diialysis facility that closed down. And I actually went and spoke with those patients as it reopened up.
▶ 2:02:28Those people had to drive over a pass during the snowstorms that would occur and they might not have accessed it. So again, not only do they have to go through a very troublesome therapy that can cause many issues in terms of being able to live your normal life, it's also the worry that they can't even get that life-saving therapy. So another reason why it is so critical. Thank you for that question.
▶ 2:02:51And Dr. Taylor, in your written testimony, you mentioned having a goal to expand access to home diialysis. What hurdles do patients face in accessing or face in accessing home diialysis?
▶ 2:03:03Well, unfortunately, I think Ashley, well, thank you for the question. I think Ashley's example is a prime one. She did not even know that home diialysis was was a therapy. And so, when you think about modality discussion, so as we're having conversations with our patients, it's not that just incenter diialysis is the only option. In fact, home diialysis, hemo or parinal dialysis is is um better for patients. It does increase the likelihood that they'll end up receiving a patient.
▶ 2:03:32But as a nephrologist, I would also say that a patient centered shared decision-making conversation has to include that a patient doesn't have to do diialysis in the first place. And so when you think about the discussions that are ha that are occurring with patients, unfortunately Ashley is a very good example and I think she mentioned it that there wasn't a shared decision-making patient centered discussion that occurred.
▶ 2:03:57But if you have those then you're going to increase patients who dialize at home and receive a transplant.
▶ 2:04:05Thank you Mr. Chairman. I yield back.
▶ 2:04:07There's still many still many.
▶ 2:04:09Thank you Mr. chairman and just a huge thank you to all the witnesses for being with us today. And a very special thank you to Dr. Watnik um who's been an incredible champion for the kidney community and someone that I have relied on um and ex for your expertise uh and you're doing great work to help save lives and take care of folks in Washington state. So I'm really thankful that you're able to be with us today. Um March is National Kidney Month.
▶ 2:04:36Um, and so I'm glad we're here to discuss issues facing patients with kidney disease, um, I think we also have to talk about the fact that um, while while we're looking at barriers to care, um, we know that one of the biggest barriers to care is going to be the fact that people don't have health care coverage. uh thanks to uh the ugly bill that Republicans passed. Uh it's the largest cut to our health care system in our nation's history, kicking millions of people off of their health care coverage.
▶ 2:05:05And Americans who still have insurance are and will see higher prices to account for this increased uninsured population. And so those who are no longer have insurance are more likely to end up in the emergency room for conditions that could have been prevented if they had access to care earlier. uninsured patients can't afford to seek medical care directly affecting our ability to identify and treat risk factors for conditions like kidney disease.
▶ 2:05:34And that's only going to lead to higher rates of kidney failure and increased costs to Medicare. So, I would hope that we could all agree that one of the best ways to avoid chronic kidney disease and kidney failure is quality affordable health care um and um making sure that people have insurance. Um the most tragic part of these historic cuts is what that they obscure some of the great bipartisan work that we had been doing um in the kidney spake space. Um I'm one of the co-chairs of the Congressional Kidney Caucus.
▶ 2:06:03Um, Congresswoman Miller and I have always been looking for ways to improve the lives of kidney patients. And currently, we're advocating for increased funding for Kidney X, um, an important program which aims to accelerate innovation in the prevention, diagnosis, and the treatment of kidney diseases. And so, Dr. Mottnik, I know you, um, know about Kidney X. How does Kidney X drive innovation and kidney treatment? And how would additional funding better support patients?
▶ 2:06:32Congresswoman Delbeni, thank you so much for bringing attention to this and for all of your support. You and uh Congresswoman Bouson helping to set that up and now in continuing as a congressional co-chair with Congresswoman Miller. Um we have continued um in this public private partnership between the American Society of Nefrology and HHS to be able to launch prizes.
▶ 2:06:54Um if you think about what is kidney X it's a moonshot basically to try to incent people to come and think about prevention treatment and disease cure. We have already launched um and awarded to over 70 different uh groups who have tried to over these many years um prizes um that have been worth more than $25 million altogether.
▶ 2:07:17And what it does, kidney X allows for people to think about innovative ways to provide dialysis, innovative ways to think about kidney replacement. We're thinking about different ways to lower barriers to kidney transplantation, which is the best therapy. So for all of these reasons, continuing to appropriate and expanding that is only going to bring in the knowhow of Americans to think about better ways to treat kidney disease and prevent it possibly. Thank
▶ 2:07:44Thank you. And I hope uh my colleagues heard that too as we look at um making sure it's a small a relatively small amount of money to incentivize research across the country. And while expanding innovative treatments for kidney disease should be top of mind, often the best treatment for kidney failure, as you said, is a transplant. Living donors of often face high out-of- pocket costs when donating, in some cases exceeding And no one should have to pay to save a life.
▶ 2:08:13That's why um myself along with representatives Miller and Shrier recently introduced the expanding support for living donors act which reforms the living Oregon donors reimbursement program to provide greater support to donors. Our bill would increase the maximum reimbursement amount from $6,000 to $10,000 and double the income eligibility for the program. Um Dr.
▶ 2:08:37Rotnik again, how could these reforms boost living donor participation um and reduce the number of patients on the transplant waiting list?
▶ 2:08:45Oh, thank you very much first of all for introducing that. We know that deceased donation has increased over the last few decades, but living donation has not budged. It's stuck stuck around 6 to7,000 per year. So providing things like wage reimbursement or child care expenses for somebody to actually think about how can they afford to donate a gift of life will allow people to think about giving that gift of life to people who really need it like Miss Littleton.
▶ 2:09:15So thank you again for supporting that and for everything that you're doing in the community.
▶ 2:09:19No, thank you. Um and I urge my colleagues again to uh co-sponsor this important bill. Again, we should do all that we can to increase the and help living donors, but also increase and make sure we have more transplants to help patients across the country. Um, thanks again to all of you and I yield back, Mr. Chairman.
▶ 2:09:38Thank you. Well, we're just about done. I want to ask you one last closing question while I give you a few minutes each you talk about it. We're take taking we're spending flat five trillion or better on healthcare. It's 20% of the economy.
▶ 2:09:55Uh we've got I'm very big on prevention wasn't something I I just happened to have someone that started gave me a couple of books to read and at one book I read it was it was a good had an equation in it and the equation said at the top of the equation it was telling you about making a better choices is the quality of the nutrition of the food the bottom of the equation is calories.
▶ 2:10:20So, what's the most nutritional food when you go up to the buffet with the fewest calories and you eat all you want? So, my my point in that it sure seems like prevention when you look at, you know, 20% of kids are obese today, if that number is on or off. You children, a lot of 30 30 20 year olds are uh they can't qualify for the military. It's 31%. 50% of adults are obese. Uh we we've got to me serious problems.
▶ 2:10:49We you got to be a little bit the CEO of your own health. You can't rely on everybody else. I mean, you you got to rely on the doctors and all that, but you got to take more take it more serious. I think all of us I know we're all busy, but I grew up in a bluecollar family. Someone just happened to give me some couple things to read and I kind of picked up on it. I even see it with my got 10 grandkids. I go to my you one two two sons, one has seven.
▶ 2:11:15I go over there and if I, you know, I have an 80% rule, only try to do it 80%, try to eat the right things. But she's so good about feeding the kids the right real food. And so if I go over there and sneak in the corner and try to get a Diet Coke, they'll find me, hunt me down, say, "Papa, that's poison. You can't drink that." And that's the true story.
▶ 2:11:39But the the the the mother of seven, she's got, you know, you come in her house, couple big bowls of fruit, vegetables, and I know some areas it's tough to get. But my point is is that we've got to find a way to help people, educate people to be be able to make better choices themselves because I'm convinced a lot of the food that we eat isn't food. It's garbage. And we need to do a better job of trying to get real food. What do I mean by that? primarily vegetables, green vegetables, fruit.
▶ 2:12:09A lot of it we don't, but we've got to get more people where they understand the benefit of that. You don't have to go to the doctors all the time and everything else. So, I appreciate, you know, what you've been said today. People need support and help and it's not going to change in a day, but we do need to take the challenge on of trying to help educate people that are interested in listening and so they can make a better choice when they go there. because I went through that. It's like in your 30s, it's like a yo-yo. You're going up or going down your weight.
▶ 2:12:39If you're not paying attention, you're going up. And as soon as you're, you know, you're paying attention, it goes down. But most nutritional food with the fewest calories, they listed out every option, whether it's cottage, cheese, or anything you want to eat, they rate it. So, I'm going to Mr. Butler, let's just swing across here. What do you think about what I said? Is that applicable you feel like to what we're talking about today or applicable in general? just what you where is where does that fit in. I just think prevention there's not enough said about it.
▶ 2:13:08Let's not get heart disease and cancer in the first place. 90% of cancer you catch it early you you nip it. You can nip it. And so I just think there needs to be a lot more attention on that end. Don't react. Be proactive. And one of the basic things I've got one of six. I tell my brothers and sisters get minimum you got to do is get a physical every January. And if you got a few tweaks or adjustments, you try to make those and try to catch it before it becomes a big issue.
▶ 2:13:36And so, but I think people I realize have more access. Some people have more access than other. We've got to give people full access to the extent of good information and knowledge. So, why don't we start? We'll run down here, then we'll get to go home. I'm going to defer to my medical colleagues here, but I know as a business person, the best way to to bring down costs is to prevent people from having to go to dialysis.
▶ 2:14:00And, you know, focusing on on prevention and treating chronic kidney disease, I I think is the the best way to yield savings uh for the medical system.
▶ 2:14:09And the two docs, Dr. I'm just trying to just my kind of my thought what I you know as you get older you also you learn some things along the road what the right to do and not to do what works for me might not work for somebody else but what's your thought about what's been said about as we look down the road the next five or 10 years how important is it that we take some responsibility
▶ 2:14:31it's tremendous and and the goal is to get older but it's to get older health healthily and and well there's no doubt that when you look at the two most common causes of kidney disease, diabetes, and hypertension. There's a component of the diet. There's there is a nutritional component to increasing the risk increasing the risk for developing one of those, especially if you if you're obese.
▶ 2:14:55And so when you think about the opportunity to decrease the risk of developing an advanced disease such as chronic kidney disease, such as heart failure, heart disease, obesity, any of those, any any chronic illness that predisposes you to doing poorly, not growing well, not growing old well.
▶ 2:15:17Anything that we can do to increase awareness, increase education, and increase access to healthy foods and healthy lifestyles decreases the risk that some of these diseases will develop and as a society will decrease the amount of money that we have to spend on healthcare, which is a win-win.
▶ 2:15:39I'm going to get more specific to give some examples because I agree 100% that thinking about treatment and diet first for high blood pressure and diabetes is the way to go. Rather than throwing medications, let's try to do this by diet and exercise. And this includes things that are low in sodium for your diets, not processed foods, foods that are um low in sugars. And again, an individual needs to have an individualized plan with their health care provider to make sure is appropriate for them.
▶ 2:16:09And so with that, I would just urge that this is not any one food. In fact, you don't only want to eat one food. You want to eat a pallet of colorful foods that are hearthe healthy, kidney.
▶ 2:16:19Thank you for the question.
▶ 2:16:20But anyway, I just uh let me just say I'd like to thank our witnesses for appearing before us today. Please be advised that members
▶ 2:16:32I think did you someone else want to say I was just going to the doctors. Are you a doctor, too? You can jump in. You know, everybody's a doctor today. Miss Little, would you like some add something to the conversation? Thank you so much for what you have added. It's
▶ 2:16:49Oh, I thank you for letting me be here. Um, I was just going to agree that it I think what would have helped me a lot would have if I had had the information beforehand before it got to dialysis and like they mentioned diet and exercise. Now I have a dietitionian that I see regularly because I'm on dialysis.
▶ 2:17:13But if I had had them beforehand and gotten the knowledge that I have now, maybe um treatment could have been delayed or I would have never been on dialysis to begin with if I had had the same access that I have now.
▶ 2:17:29Mr. Chairman, I I agree with you wholeheartedly and I ask unanimous consent that these two items.
▶ 2:17:37So So okay, anything else? Okay. I'd like to thank our witnesses for appearing before us today. Ple please be advised members have two weeks to submit written questions to be answered uh in writing. Those questions and answers will be made part of the formal record. With that, the subcommittee stands adjourned. Thank you.