When the Executive Order on Advancing American Kidney Health was signed in 2019, much of the kidney community scoffed at the initiative's bold goals. However, the executive order's audacity served as a call to action, resulting in considerable progress, especially in expanding access to home dialysis and transplantation. One could argue that ASN and the kidney community have accomplished more in the past 5 years—despite the COVID-19 pandemic—than the 1971 “war on cancer's” initial 5-year goal of curing cancer in time for the US Bicentennial (1).
The executive order aspired that by 2025, 80% of patients who were newly experiencing kidney failure would be “receiving dialysis in the home or receiving a transplant” (2). To advance these goals and institute lasting reforms, the executive order resulted in two new payment models for kidney care. Besides helping to shape both models, ASN continues to advocate for additional changes to the US transplant policy to maximize access to kidney transplantation regardless of socioeconomic status, geography, race, ethnicity, sex, or gender.
Efforts to increase home dialysis in the United States have received less publicity than transforming transplant. When the Medicare End-Stage Renal Disease (ESRD) Program started in 1973, “more than 40% of the 11,000 or so [patients on dialysis] in the United States” were receiving “home hemodialysis” (3). By the time of the executive order in 2019, the total number of patients on dialysis in the United States had increased to 566,614, but the percentage dialyzing at home was only 12.7% (4).
The major drivers of the shift away from home dialysis are well-documented. The Medicare ESRD Program included financial incentives that focused dialysis on in-center care. As Paul Starr, PhD, observed in 1982, “Kidney dialysis centers provide a particularly graphic example of the rise of private industry in response to public financing” (5).
This focus on in-center dialysis also stifled innovation in making home dialysis more accessible for people living with kidney failure. Because most patients undergoing dialysis are treated in-center, and home-based technology has failed to keep pace with therapies in other specialties, many nephrology fellows have lacked both appropriate training in home dialysis and mentorship when they enter practice.
Given the overall lack of public awareness about kidney diseases, uneven fellowship training in home dialysis, and a limited pool of nephrologists with expertise in providing such care, it is not surprising that people faced with kidney failure are often unaware that home dialysis is an option. This lack of awareness is further exacerbated by health disparities and inequities in the United States.
To address these obstacles and ensure the ongoing success of the executive order, ASN has used a multipronged approach for increasing home dialysis in the United States. Charged with boosting “awareness and outcomes of home dialysis therapies by enhancing education of kidney care professionals and trainees, addressing disparities in access to home dialysis, and advocating for policies that improve access to all dialysis treatment options in order to promote the highest quality of care,” the ASN Home Dialysis Project is the centerpiece of this effort (6).
Reversing more than 50 years of federal policy
ASN helped undo decades of substantially lower payment rates for nephrologists providing home dialysis care as compared with in-center dialysis care by helping make the two rates of payment closer. Taking effect in 2021, this increase in payment for home dialysis occurred at approximately the same time as the two payment models for kidney care were introduced.
ASN also led advocacy efforts to enact legislation permitting nephrologists to use telehealth to interact with patients dialyzing at home. This 2019 change marked the first instance in which the Medicare program allowed physicians to care for patients in their homes via telehealth. ASN also supports assisted home dialysis for limited periods, such as in the beginning or when patients on dialysis (or their care partners) are ill.
Additionally, ASN urged the Agency for Healthcare Research and Quality to conduct a literature review on the benefits of assisted home dialysis. If successful, this request could result in the agency's increased validation of the benefits associated with supporting people who dialyze at home and advance consideration of such policies within Congress and the Centers for Medicare & Medicaid Services.
Spurring innovation
In tandem, the Kidney Health Initiative (KHI) and Kidney Innovation Accelerator (KidneyX) have advanced home dialysis by addressing regulatory barriers and funding innovators, respectively. KHI's workshop, “Stimulating Patient Engagement in Medical Device Development in Kidney Disease,” resulted in a comprehensive review by the US Food and Drug Administration to expand the label of a cleared home hemodialysis device, permitting treatment in absence of a qualified care partner (7). This expansion continues to stimulate innovation and investments in home dialysis devices (8).
To further support innovations that will accelerate the adoption of home dialysis, KHI convened the kidney community to publish a “Technology Roadmap for Innovative Approaches to Renal Replacement Therapy” (9). A collaboration with the US Food and Drug Administration, this roadmap aligned different technology-driven approaches spanning in-center and portable dialysis devices to an implanted biomechanical and xenotransplanted artificial kidney.
KidneyX used the roadmap to frame four prize competitions awarding more than $17 million to stimulate innovation. These competitions identified more than 20 winners who are developing technologies to advance safer, more patient-friendly dialysis access; remote monitoring; home dialysis; and portable or wearable dialysis, as well as virtual training, telemonitoring, and telehealth. The KidneyX Patient Innovator Challenge (a partnership with the National Kidney Foundation) produced 11 winners focused on improving home dialysis.
KHI and KidneyX are building on an important legacy and closing a gap that has existed for far too long. As a recent editorial emphasized, “many critical innovations in clinical care delivery and research” in home dialysis—particularly peritoneal dialysis (PD)—originated in the United States (10). “These include the development and introduction of the Tenckhoff PD catheter, the first description of the use of continuous ambulatory PD for patients with kidney failure, the development of the first PD cycler, the first description of the peritoneal equilibration test in 1987, and the first genome-wide association study among patients on PD, to name just a few.”
Training the nephrology workforce
The ASN Task Force on the Future of Nephrology issued 10 recommendations in 2022. The task force's third recommendation committed ASN to emphasizing patient-centered care: “Nephrology must emphasize personalized care to optimize kidney health and increase patient choice, including early intervention, transplantation, and dialysis” (11). In recognizing that “home-based modalities for kidney replacement therapy are often preferred options,” the task force highlighted that training requirements for nephrology fellows must further highlight home dialysis.
Responding to ASN's recommendation, the Accreditation Council for Graduate Medical Education now requires nephrology fellowship training programs to “deliver effective and patient-centered education regarding options for management of ESRD, including transplant, home dialysis therapies (peritoneal dialysis and home hemodialysis), in-center hemodialysis, and supportive care” (12). ASN has encouraged the American Board of Internal Medicine to revise the “blueprint” for the initial certification examination in nephrology to include more questions about PD and home hemodialysis (13).
To facilitate more training in home dialysis—and with funding from the Centers for Disease Control and Prevention—ASN partnered with the Home Dialysis University (HDU) to provide travel support for nephrology fellows to attend HDU in 2023 (30 fellows) and 2024 (60 fellows). Through an in-person, immersive approach to home dialysis therapies, HDU has been educating nephrology fellows and nephrologists since 1998.
HDU's partnership with ASN has also produced a case-based education series that covers a wide range of topics in home hemodialysis and PD, including dialysis access, complications’ management, writing prescriptions, and day-to-day troubleshooting. The program now encourages “mentoring,” by creating opportunities for the fellows to network with expert faculty as well as to join a targeted ASN Online Community. The ASN-HDU partnership will continue to help nephrology fellowship training programs comply with the new Accreditation Council for Graduate Medical Education requirements and future fellows to certify through the American Board of Internal Medicine. Ideally, if expanded, the partnership could help all nephrologists who wish to enhance their skills, knowledge, and experience with home dialysis.
In addition to partnering with HDU, ASN is compiling a set of PD core interventions for infection prevention similar to the Centers for Disease Control and Prevention's Core Interventions for Dialysis Bloodstream Infection Prevention. Dialysis facility staff can follow this set of core interventions to minimize risk of infection (such as peritonitis, exit site, or tunnel infection) for people using PD.
Recognizing the central role of dialysis access (vascular access or PD catheters) in the uptake of home dialysis, ASN has also initiated a new program on “Transforming Dialysis Access Together,” which is focusing on the innovation, training, and awareness needed for successful home dialysis access care.
Earlier this year, CJASN published a 16-article series, “Home Dialysis: Fundamentals and Beyond” (14). This series “curates state-of-the-art, practice-centered reviews on home dialysis to highlight the most cogent issues needed for the nephrologist providing primary or consultative care for patients receiving home dialysis, with a focus on recent advances.”
Increasing patient awareness
ASN has long advocated to expand the Kidney Disease Education (KDE) benefit (currently only available for stage 4 chronic kidney disease) to stages 3b and 5. By teaching people how to slow the progression of kidney diseases and explaining modality choice, the KDE benefit provides information essential to promoting home dialysis. Reflecting ASN advocacy, one of the aforementioned payment models expanded KDE to stages 3b and 5 and waived the copay for patients using this benefit.
Overcoming disparities and inequities
Even though Black and Latinx/Hispanic Americans have a greater risk of kidney failure, they “are less likely than non-Latinx White patients to be treated with home dialysis” (15). This difference is “not completely explained by geographic, demographic, and clinical factors,” which means that these groups face “other contributing factors, specifically environmental, social, and system-level barriers to home dialysis.”
Black and Latinx/Hispanic Americans living with kidney diseases also “experience a disproportionate burden” of hypertension, diabetes, and obesity; are less likely to receive care before their kidneys fail; are referred later to a nephrologist, often requiring “inpatient or urgent dialysis initiation, which in most cases, results in central venous catheter placement and in-center dialysis”; and may face socioeconomic barriers, such as poverty, that are “associated with home dialysis failure, which may influence their likelihood of being offered home therapies in the first place” (16).
Beyond Black and Latinx/Hispanic Americans, communities with disproportionately low rates of access to home dialysis include people “with low educational attainment, limited family support, and Medicaid coverage” as well as people living in rural communities (16). As such, nephrology fellowship training (and beyond) must address potential biases and barriers that could impede offering home dialysis as an option for people from socially marginalized communities.
In addition to leveraging its role in supporting fellowship and continuing education, ASN must focus specifically on overcoming inequities and disparities in home dialysis. Each of these challenges merits a focused intervention by the ASN Home Dialysis Project or Health Care Justice Committee.
Making progress
Galvanized by the Executive Order on Advancing American Kidney Health, ASN has spent the past 5 years trying to increase home dialysis in the United States by reversing more than 50 years of federal policy, spurring innovation, improving training for the nephrology workforce, increasing patient awareness, and overcoming disparities and inequities. Clearly, much more progress is needed, but it is notable that the United States is one of the few countries in which use of home dialysis is increasing (10).
According to the US Renal Data System, the rate of home dialysis utilization increased from 10.2% to 14.1% between 2012 and 2021 (4). An abstract presented at ASN Kidney Week 2023 concludes that “the rate of home dialysis utilization grew from 12.3% to 15.9% across all Medicare FFS [Fee-for-Service] beneficiaries” between the first quarter of 2019 and the second quarter of 2022 (17). Fueled by the executive order, ASN and the kidney community deserve credit for this progress as the United States nears its semiquincentennial.
On November 4, 1971, Shep Glazer testified on behalf of the National Association of Patients on Hemodialysis (for which he was a former vice president and which later became the American Association of Kidney Patients) to the Ways and Means Committee of the House of Representatives while attempting to dialyze. Mr. Glazer's wife stated after his testimony, “The idea of bringing the dialysis machine was not for shock value or for publicity, it was to prove and inform, because there has been so much misconception about dialysis in the country today” (18). She continued, “As you can see, it is not necessarily a hospital procedure. It can be done anywhere if it could be done here in the hearing room.”
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