In 2021, ASN launched “We're United 4 Kidney Health,” an initiative that repositions nephrology as a specialty committed to early detection and treatment, not just the “failure” and “end-stage” aspects of kidney treatment. We're United 4 Kidney Health presents a rallying cry that shows how the kidney community can advance the field by embracing four priorities:
INTERVENE EARLIER to prevent, diagnose, coordinate care, and educate.
TRANSFORM TRANSPLANT and increase access to donor kidneys.
ACCELERATE INNOVATION and expand patient choice.
ACHIEVE EQUITY and eliminate disparities.
ASN is committed to achieving a world without kidney diseases and has made strides to do so in 2022 by championing policies across these four priorities that will improve the lives of individuals living with kidney diseases.
INTERVENE EARLIER to prevent, diagnose, coordinate care, and educate
It is crucial to prevent or slow the progression of kidney diseases and related comorbidities for the more than 37 million Americans living with kidney diseases.
This year, the US Preventive Services Task Force (USPSTF) accepted the nomination of chronic kidney disease screening for evaluation to potentially become a future recommendation for preventive services, as proposed by ASN, the Coalition for Kidney Health (C4KH), and other kidney health organizations. ASN advanced support for this recommendation for early kidney disease testing across the federal government and throughout Congress. If the USPSTF concurs with ASN and other advocates and recommends screening for kidney diseases, it will be a foundational step in enabling other federal policies that better support earlier detection and intervention.
With the expansion of Medicare Advantage (MA) in 2021 to allow people with kidney failure to enroll in MA, culminating in a 77% enrollment increase among people with kidney failure in the first year of allowed election, people with kidney failure have increased options for health care coverage. However, the proliferation of private health coverage raises concerns that existing data sets based on Medicare claims data, such as the US Renal Data System, will not completely capture the data of patients enrolled in MA plans, limiting the ability of researchers to understand and improve care for people with kidney failure. ASN advocated for Medicare and the National Institutes of Health to address this data gap in MA expansion and to include complete data of people with kidney failure.
In 2022, ASN made further progress supporting research of new biomarkers to diagnose kidney diseases and implement health equity improvements. Language was included in the fiscal year (FY) 2023 funding package requesting the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to prioritize research of new biomarkers and health equity interventions. In addition, ASN collaborated to increase funding for kidney disease awareness and surveillance and the Centers for Disease Control and Prevention. With new therapies available to patients that can slow the progression of kidney diseases, building public awareness about kidney diseases is an important step to aid in earlier intervention. Furthermore, the Center for Medicare and Medicaid Innovation made history by introducing the first-ever measure of health equity in the End-Stage Renal Disease (ESRD) Treatment Choices Model.
TRANSFORM TRANSPLANT and increase access to donor kidneys
The second priority of the We're United 4 Kidney Health campaign revolves around fundamentally improving the current transplant ecosystem, as 13 Americans die each day on a 100,000-person kidney transplant wait list.
Increasing transparency and accountability in the US transplant system has been a top priority for Congress and an area of significant interest for the Biden-Harris administration in 2022. ASN submitted testimony to the Senate Finance Committee calling for system reforms to increase transparency so that patients can be “provided the opportunity to be true partners in their care.”
ASN also made extensive recommendations to the Centers for Medicare & Medicaid Services (CMS) and the Health Resources and Services Administration in response to requests for information, seeking perspectives on ways to improve transplant care that builds on the implementation of an earlier rule establishing objective and verifiable performance metrics for organ procurement organizations.
Culminating in years of advocacy on behalf of ASN and many other stakeholders, ASN also welcomed and supported proposals from CMS to provide dental coverage for people with kidney failure—a requirement for obtaining a kidney transplant that currently hinders some people's access to the optimal therapy. The society also greeted with great enthusiasm the plans of CMS to operationalize coverage of lifetime immunosuppressive drug coverage for kidney transplant patients, as mandated by Congress in 2019, the outcome of years of advocacy by ASN and many other key patient and health professional organizations.
Last year, ASN helped secure the re-introduction of the Living Donor Protection Act in Congress, and this year secured a historic number of co-sponsors (155 in the US House of Representatives and 43 in the Senate). This legislation will remove barriers to donation and increase access to life-saving transplants by ensuring that insurance companies offering life, disability, and long-term care plans do not deny or limit coverage or raise premiums based on an individual's status as a living organ donor. This bill was also the focus of Kidney Community Advocacy Day, during which ASN brought together nearly 20 other organizations advocating for individuals with kidney diseases and health professionals to jointly urge Congress to enact these donor protections.
ACCELERATE INNOVATION and expand patient choice
The third priority centers on accelerating innovation and expanding the therapeutic options available to patients.
Advocacy by ASN and the rest of the kidney community secured $5 million in congressional appropriations for the Kidney Innovation Accelerator (KidneyX) and $2.204 billion for NIDDK in FY 2022 (October 1, 2021–September 30, 2022). NIDDK received a funding-level increase over FY 2021 funding levels of approximately 3.4%.
Finally, ASN also worked regulatory avenues to advance reimbursement for increased innovation in transitional add-on payment adjustment for new and innovative equipment and supplies and transitional drug add-on payment adjustment, while developing payment pathways for an artificial kidney and other innovations and addressing barriers and quality measurement in home dialysis.
ACHIEVE EQUITY and eliminate disparities
The entire kidney community must begin to address a number of disparities affecting individuals with kidney diseases in an effort to achieve equity.
ASN supported the expansion of telehealth as a result of the COVID-19 public health emergency (PHE), which serves as a valuable tool in eliminating disparities to achieve equity. The flexibilities and waivers, however, would expire after 151 days from the end of the COVID-19 PHE period. Virtual care and telehealth are now significant pieces of the US health care system, and ASN supports efforts to ensure the certainty of these services after the PHE. ASN has urged Congress to permanently extend pandemic telehealth flexibilities, including removing home and originating-site restrictions and establishing parity between audio and visual telehealth services. Congress is finalizing a 2-year extension of these telehealth policies while working toward a permanent extension.
ASN also supported the collection and use of social determinants of health and related data—such as zip codes—within the Medicare ESRD program. One particular approach is to identify areas of higher concentration of dual-eligible (both Medicare and Medicaid) individuals and higher uses of low-income subsidies. ASN is working with the US Department of Health and Human Services to identify and address inequities and disparities across overall health and kidney care. As noted, if the USPSTF issues recommendations to screen for kidney diseases, for which ASN, the C4KH, and other kidney health organizations are advocating, it would significantly advance the federal government's ability to support earlier diagnosis and intervention—elements of care that are crucial to ensuring equitable access to interventions that slow the progression of disease.
Individuals with kidney diseases around the world are uniquely vulnerable to the effects of climate change, which are expected to become more extreme and occur with greater frequency. More broadly, the population of people with kidney diseases is disproportionately composed of people at a socioeconomic disadvantage who are also bearing the greatest burden of climate change. Recognizing that climate change threatens to increase the incidence and prevalence of kidney diseases, disrupt access to care, and widen inequity in kidney health, ASN released a statement on climate change and supports polices and interventions to address climate change.
ASN championed kidney care across the federal government and throughout Congress in 2022 to help further kidney health policies. These advances build further momentum as the nephrology community unites toward a world without kidney diseases. Updates about these policies will be provided in subsequent issues of Kidney News and in real-time via @ASNAdvocacy on Twitter.
