CDRP Hosts 12th Annual Symposium: Intersections of Policy, Innovation, Healthcare and Financialization for Kidney Disease: Where Are We in America Today?

On October 16, 2024, the Center for Chronic Disease Research and Policy, in partnership with the UChicago Medicine Section of Nephrology and Transplant Institute, hosted its 12th Annual Symposium, Intersections of Policy, Innovation, Healthcare and Financialization for Kidney Disease: Where Are We in America Today? at the Rubenstein Forum at the University of Chicago. Featuring a keynote lecture by Centers for Medicare & Medicaid Director for the Division of Special Populations and Projects at the CMS Innovation Center Tom Duvall, MBA, the symposium also presented talks by Michelle Josephson, MD, FASN, Professor of Medicine and Surgery at the University of Chicago and past president of the American Society of Nephrology, William F. Parker, MD, PhD, Assistant Professor of Medicine and Public Health Sciences and Assistant Director of the MacLean Center for Medical Ethics at the University of Chicago, and James Lash, MD, Robert Wood Keeton Professor of Medicine and Chief of the Division of Nephrology at the University of Illinois College of Medicine. The symposium was co-organized and moderated by CDRP faculty affiliate Milda Saunders, MD, MPH, Associate Professor of Medicine at the University of Chicago, and brought researchers, policymakers, clinicians, students, and community members together for an intensely focused conversation on health equity and health policy as reflected and refracted through the lens of chronic kidney disease.

“Whether you’re interested in policy or the kidneys or kidney health policy, I think this symposium has been a long time coming,” said Saunders in her introduction. “Kidney policy is a microcosm of health policy in general.”

In “Kidney Care Education and Policies: A National View from American Society of Nephrology,” Josephson opened the discussion with a sweeping historical view of nephrology, kidney disease, and kidney policy in America from the early 20th century to the present day. The invention of dialysis by Dutch physician Willem Kolff in 1943 and the improvement of his technology by American physician Belding Scribner in 1960 created a paradigm shift for kidney failure, transforming it from a “death sentence” to a treatable disease. However, from its beginnings, resources were scarce, and committees of laypeople, termed “God’s committee” by a journalist in the 1960s, were tasked with determining who was worthy of receiving dialysis. A second paradigm shift occurred in 1972, when President Richard Nixon made it the law that Medicare would cover dialysis and transplantation. “This is the only universal health allowance for anything in the United States,” said Josephson, who attributes the law’s passage by Congress to patient advocacy. From this moment, “dialysis became available to all Americans, regardless of race, regardless of economy, regardless of geography.” Even then, dialysis was seen as a holding measure to keep patients alive as they awaited transplantation, first achieved in 1954 when Dr. Joseph Murray transplanted a kidney from one man to his identical twin brother. Currently, 37 million Americans, or about 15%, have kidney disease. Over 800,000 have end-stage kidney disease, with over 100,000 beginning dialysis each year. African Americans are disproportionately affected by the disease and 3.5 times more likely to develop kidney failure. “That leaves us with a system that we’ve created with all good intentions, but it doesn’t really work well for the people that it was intended to help–and it’s very expensive,” said Josephson, who noted that while Medicare spends 7% of its budget on kidney care, kidney patients only comprise 1% of Medicare recipients. At the same time, research on kidney disease is underfunded, both in total and with respect to the prevalence of the disease, with the NIH spending only $13.94 per patient with the disease (vs $2500 per patient with HIV/AIDS). “You wouldn’t be surprised to find that we’ve had much less innovation in the space,” she said. Underfunding has also discouraged physicians and researchers from becoming nephrologists, contributing to overall scarcity of care. Nevertheless recent policy changes have continued to improve the landscape: the 2019 Advancing American Kidney Health Executive Order, the 2023 Securing the US OPTN Act, and, currently under consideration, the Increasing Organ Transplant Access (IOTA) Model at the Centers for Medicare and Medicaid.

“The average person who registers at a transplant center is more likely to die or be delisted than actually receive the therapy,” said Parker in “Ethics and Equity in Kidney Allocation.” Kidneys are the most scarce of solid organs, with over 90,000 people currently on the waitlist for a kidney, of over 104,000 people awaiting organ transplants, in the United States. Even if supply were increased by changing standards for acceptance of deceased donor kidneys, Parker suggested that demand for kidneys is actually even higher than the waitlists would indicate, and like initial COVID-19 vaccines and other scarce resources, algorithms for allocation must be developed. He offered four possible ways of thinking about the allocation of scarce resources: treating people equally, maximizing total benefits, favoring the worst-off, and rewarding social usefulness. Kidney allocation is managed by just a few agencies: the US Department of Health and Human Services Health Resources and Services Administration (HRSA), the Organ Procurement and Transplantation Network (OPTN), and the United Network for Organ Sharing (UNOS). Present policy attempts to make the best use of organs, rank patients in order of urgency, and treat patients equally with respect to geography. Under consideration is a new system, the continuous distribution policy, which, according to Parker, offers more opportunities to address the ethics of allocation by combining medical urgency, likelihood of post-transplant survival, candidate biology, patient access, and placement efficiency into a composite score. Kidney allocation policy has long contained flaws, such as the measurement of time on the waitlist, which favored patients with private insurance, who could access the waitlist before needing to undergo dialysis. In a commissioned paper in Realizing the Promise of Equity in the Organ Transplantation System cowritten with Robert Gibbons and Yolanda Becker and published by the National Academies of Science in 2022, Parker and colleagues showed through modeling that while transplantation improved patient survival by 31%, the treatment effect of kidney transplantation is much stronger for patients who had been on dialysis for 5 years. Additionally, preemptively transplantation reduces total quality adjusted life years. “There actually isn’t a tradeoff [between equity and efficiency]… transplanting patients off dialysis saves more lives, it’s cheaper, and also treats people more equally,” said Parker.

In “Disparities in Kidney Care Management and Outcomes: Lessons Learned from the CRIC Study,” Lash shared insights from over two decades of the Chronic Renal Insufficiency Cohort Study from his role as principal investigator at UIC, one of the nation’s seven participating centers. Because of high Hispanic population, UIC also has a study dedicated to Hispanic patients, as well as a collaboration with researchers in Mexico City. With an initial cohort of 521 patients, as well as 327 in the Hispanic study, researchers collected data on medical history, physical measures, psychometrics, biomarkers, renal outcomes, cardiovascular disease outcomes, and more. Lash discussed a study on neighborhood socioeconomic status and cardiovascular events led by Symposium co-organizer Saunders with then-fellow Avi Aronov that showed that people in disadvantaged neighborhoods have a higher risk of heart failure in those with milder chronic kidney disease and a higher risk of death in those under age 60. Another study led by Saunders demonstrated that adults with chronic kidney disease in disadvantaged neighborhoods had a higher risk for hospitalization. A PLoS Medicine research study showed that people with chronic kidney disease have an exceptionally high rate of hospitalization generally, and a Kidney Medicine study showed that those who rely on the emergency department for their health care have especially high rates of hospitalizations and death. Studies of the Hispanic population revealed a subgroup in which rates of diabetes were higher, glomerular filtration rates were lower, and chronic kidney disease was likely detected later. Marked differences between Mexican immigrants to Chicago and Mexicans in Mexico City have also been demonstrated through CRIC studies.

‘CMS is the dominant payer” for patients with end stage chronic kidney disease, as well as “the primary or secondary payer for about 80% of people on dialysis, said Duvall in his keynote lecture, “The Medicare CEC Model: Using Lessons Learned To Improve Value-Based Kidney Care,” Due to dialysis, extra physician costs, and hospitalizations, “it’s a very sick and expensive population, about six times as expensive as the average Medicare beneficiary”–also one that is structurally underserved and increasing in number. Duvall compared an “optimal journey” for beneficiaries that begins with monitoring kidney health in primary care for early intervention to slow or stop the progression of kidney disease with timely referrals to nephrology for care, versus a “suboptimal journey” that fails to identify kidney disease in time, resulting into patients “crashing” into dialysis and failing to get the transplants they need. The Medicare Comprehensive ESRD Care Model, which ran from 2015 to 2021, joined dialysis clinics, nephrologists and other providers to create “ESRD seamless care organizations” to improve care coordination. While it resulted in improved dialysis care and lower costs, it did not yet include primary care–”it showed that if we wanted to affect these things, it would take more explicit policy efforts,” said Duvall. The Kidney Care Choices (KCC) Model, begun in 2022, and the ESRD Treatment Choices Model (ETC), begun in 2023, both aim to increase transplantation and home dialysis. The Increasing Organ Transplant Access (IOTA) Model, proposed to start on January 1, 2025, focuses on increasing transplantation by maximizing use of deceased donor kidneys, improving quality of care and care coordination, offering financial incentives to improve health equity, and identifying more living donors. KCC includes kidney patients at earlier stages of the disease and financially incentivizes home dialysis and transplantation, which has resulted in higher rates of home dialysis and earlier care for kidney patients.

Following a panel discussion, attendees shared lunch and a lively poster session. Jameel Alausa, a second-year student at UChicago’s Pritzker School of Medicine, received the poster award for “Racial Disparities in Kidney Transplant Waitlisting: The Role of Dialysis Facility Quality Under the ESRD Quality Incentive Program.”