Congressional Briefing Wrap-Up: The Crisis in Kidney Disease

As part of our 2022 Kidney Action Week, AKF hosted a virtual Congressional briefing called The Crisis in Kidney Disease to discuss the growing rate of kidney failure in the U.S. In 2009, there were 574,000 people living with kidney failure in the United States; by 2019, that number had increased to 809,000. This trend is expected to continue, which means there may be over 1 million people living with kidney failure by 2030. The consequences of the increase in kidney failure cases are far-reaching and have serious implications, including the continued disproportionate impact of kidney failure on communities of color. Compared to white Americans, Black Americans are 3.4 times as likely to develop kidney failure, Native Americans are 1.9 times as likely, Hispanic Americans are 1.5 times as likely and Asian Americans are 1.3 times as likely.

Our Congressional briefing investigated why we are in this situation and what we can do to improve it. The goals of the briefing were to educate attendees about the state of kidney disease, provide recommendations for policymakers and inform people living with or at risk for kidney disease about ways they can advocate for themselves. AKF's President and CEO, LaVarne A. Burton, moderated our session and spoke with our panelists about their work and its implications for the future of kidney disease in the United States.

Our first speaker was Dr. Dora Hughes, the Chief Medical Officer at the Center for Medicare and Medicaid Innovation (CMMI) at the Center for Medicaid and Medicare Services (CMS). Dr. Hughes spoke about the role that CMMI plays in supporting the broader health equity agenda in the Biden Administration and described how kidney disease illustrates a variety of health disparities. For example, people of color are less likely to receive pre-dialysis care from a nephrologist (a kidney doctor) or go on home dialysis. In 2020, white kidney transplant recipients received the majority (64%) of living donor kidney transplants. She also provided information on CMMI's vision for the next 10 years and described some of their treatment models that address issues around kidney disease, including the Kidney Care Choices Model. The Kidney Care Choices Model is designed to help health care providers reduce the cost and improve the quality of care for patients with end stage renal disease. This model also aims to delay the need for dialysis and encourage kidney transplantation. She also spoke about the End-Stage Renal Disease Treatment Choices Model, which seeks to increase rates of home dialysis and transplantation and invests in home dialysis infrastructure.

Our second speaker was Mike Spigler, vice president of Patient Support and Education at AKF. Mike presented key results from a 2022 AKF survey that showed some concerning trends on kidney disease testing and late referrals to care after a kidney disease diagnosis. This survey was part of AKF's Unknown Causes of Kidney Disease project and surveyed 300 doctors in primary care, nephrology and endocrinology. The survey showed several striking results. The first was that the doctors estimated that 15% of the cases of kidney disease that they saw had an unknown cause. The survey also found that nearly half of patients were not referred to a nephrologist until they had reached stages 4 or 5 of kidney disease. The reasons for these late referrals included difficulty accessing nephrology care in rural areas, a lack of early detection and confusion about next steps and who primary care providers should refer for specialized treatment. Mike suggested possible solutions to the issues found in the survey, including making both eGFR testing and urine tests a part of annual physicals to catch kidney disease in earlier stages.

The next speaker was Congresswoman Lisa Blunt Rochester from Delaware, who discussed her bipartisan bill, The CARE for All Kidneys Act (H.R. 3893). This bill seeks to address health disparities around kidney failure by (1) increasing the diversity of participants in clinical trials; (2) increasing access to dialysis in underserved areas, developing access to home dialysis and increasing transplantation rates; (3) bringing key organizations together, such as the National Institutes of Health and the Centers for Disease Control and Prevention, to learn how better to care for people with kidney disease; and (4) providing comprehensive care for people who are more greatly impacted by kidney disease and reducing barriers in communities of color to organ transplants so that all Americans can have access to life-saving treatments. Rep. Blunt Rochester also called on Congress to come together to fund research, prevention, testing and treatment of kidney disease.

Our final speaker was Dr. Patrick Gee, an AKF Ambassador, kidney transplant recipient and the founder of iAdvocate, Inc., a non-profit faith-based health and wellness organization. Patrick talked about the four types of racism he has endured as a Black man with kidney disease: institutional, interpersonal, structural racism from the healthcare system and internalized racism. His experience with kidney disease illustrates a variety of examples of inequities in treatment for people of color. For example, he was never told, over the entire decade he was being treated for diabetes, that he was at risk for kidney disease. He was also given a late referral to a nephrologist and was not informed about the option of a pre-emptive kidney transplant even though he would have been eligible. Patrick was offered two kidneys for his transplant that were going to be discarded, discovering that only one was functional. After receiving his transplant, Patrick realized how critical it was to advocate for himself.

Patrick went on to explain that Black people are more greatly harmed by delayed referrals for kidney care and transplant evaluations. He said that studies have suggested these issues may be in part due to the implicit or explicit biases of doctors, a lack of understanding about the benefits of transplants for Black individuals, as well as inaccurate beliefs about the causes of health disparities. Patrick also drew attention to the different standards in measuring kidney function through eGFR (estimated glomerular filtration rate) testing. Historically, doctors have used a different scale to measure eGFR for Black people versus non-Black people, often missing the early stages of kidney disease. Fortunately, a national task force recommended the removal of the race coefficient in 2021 and updates to the calculation continue to be implemented in labs and institutions across the country. Patrick looks forward to continuing to work with AKF to find solutions to these health disparities and ways to heal the damage they have caused in communities of color.

During the Q&A portion of the briefing, our panelists discussed the role that increasing diversity in the healthcare workforce could play in increasing quality of care and access. They also discussed ways to improve the information available to primary care providers and patients as well as work the Biden Administration is doing to address these inequities and disparities, including a recently released framework and priorities for CMS that includes steps for addressing such inequities.

If you missed the briefing or would like to watch the full session, you can watch it here.