Catalyzing Advocacy and Policies for Patients with Kidney Disease

It is now 50 years since passage of the ESRD Act (Section 2991 of Public Law 92-603) extended Medicare coverage to individuals with ESRD who “require renal replacement therapy to sustain life.” This was a pivotal and lifesaving event for patients with kidney disease and transformative for our profession. It is an anniversary that we hope will prompt reflection and catalyze new changes for patients with kidney disease.

The number of ESRD patients with Medicare coverage in the United States have vastly exceeded expectations at the time the legislation was passed. Approximately half a million people are receiving dialysis, and almost a quarter million people are living with a kidney transplant.¹ Millions of lives have been extended over these five decades. Major private investments have been made in the capital needs of facilities to deliver care and extensive personal commitments made by the highly skilled personnel who deliver care. The numbers and lingering health problems have spurred attention to earlier stage CKD and its prevention. There is much to celebrate.

Nevertheless, there is much about the status quo we cannot applaud. As was extensively documented in our 2022 Special Series on Addressing Racial and Ethnic Disparities in Kidney Disease, policies have not consistently addressed the needs of the most vulnerable in our society or mitigated the disparities in the burden of disease.² In our many conversations with colleagues about the 2022 Special Series, we have found that the persistent inequities are of deep concern to many of our readers. There is a sense that many feel unempowered or ill equipped to contribute to beneficial change.

The focus of a new Health Policy Catalyst Series that will run through 2023 is attention to advocacy and policy changes. We hope to empower our readers to become better advocates for kidney patients. For this series, we are inviting submissions that will identify and advocate for the policy changes needed to address inequities documented in our 2022 Special Series.

Effective advocacy requires knowing the facts and the rules. We will continue to publish original articles that will contribute to fact-based dialogue about policies affecting kidney disease care. Journal of the American Society of Nephrology (JASN) editors work hard to make sure the evidence you encounter in our pages is sound. Nephrology is well served by strong sources of reliable information. At JASN, we make extensive use of national resources, such as the USRDS, ORTN/SRTR,^1,3 and National Center for Health Statistics⁴; they are often the first places we go for data.

Knowing the rules is important and, in some ways, even more challenging. We urge readers to study the valuable Health Policy and Kidney Care Core Curriculum 2020 by Mendu and Weiner,⁵ which summarizes much of the fundamental laws and regulations affecting kidney care in the United States. Also helpful is the series in the NEJM titled Fundamentals of Health Law.⁶ One goal of the 2023 Health Policy Catalyst Series will be to build on these resources to provide a foundation for the rules that must be addressed to contribute meaningfully to policy change.

Policies are set at many levels—at the level of individual practices, health care systems, public and private payers for reimbursement, professional societies in the development of guidelines—and in regulations, legislation, executive orders, and judicial actions. Our professional societies are undertaking vigorous national legislative advocacy efforts for our patients, and many of you participate actively in these undertakings, with notable recent successes.⁷ The continued important international efforts by KDIGO to update and strengthen guidelines for care of kidney patients provide important consensus documentation to guide policy debates.⁸ The policies of hospital systems, dialysis providers, and individual practice groups matter and can all contribute to protecting patients' interests and the ability of physicians to promote those interests. All of these efforts are essential. As important as broadscale, national, and international efforts are, they should not replace the need for advocacy and engagement in local communities. Local public education efforts contribute to an engaged electorate. State regulations and legislation affects the care we deliver.

In this issue of JASN, we present three perspectives that address the aftermath of the recent Dobbs v. Jackson decision on the special reproductive health needs of women with kidney disease. The first Perspective in this series provides a broad view of the major concerns for patients with kidney disease or a kidney transplant,⁹ the second delves in greater depth into the particular issues faced by renal transplant patients,¹⁰ and the third summarizes important ramifications for care of children with kidney disease.¹¹ Delving into this important topic provides a window into the local policy ramifications of a national policy. Although national advocacy remains critical, in the short range at least, local action is essential, given the deference at the national level to the dramatic and rapidly evolving differences between states and even hospital systems.

In conclusion, JASN Editors are inviting submissions to the 2023 Health Policy Catalyst series. We as a kidney community have had great success in improving mortality and quality of life of patients with CKD but have had less success in returning them to employment. In addition to our success in improving patient well-being thereby having patients feel that they are able to return to the workplace, there is opportunity to develop policies to welcome, even encourage, those with CKD, including on dialysis, to return to the workplace.

In addition to empowering individuals and communities to deal with CKD, let us develop policies that enable/encourage communities at particularly high risk for CKD to implement strategies that prevent CKD. Here are a few examples of the many other potential questions we hope to see addressed:

• Ways to reduce or mitigate the impact of structural racism on the delivery of health care to kidney patients;

• Approaches to address inadequate or nonexistent insurance coverage for kidney disease patients including for undocumented immigrants;

• Continued attention to factors that contribute to disparities in access to kidney disease innovation and care;

• Policies that protect patient choice and physician autonomy as advocates for the patient's interest;

• Approaches to evaluate the effectiveness of alternative payment models to promote value, patients' quality of care, and patients' well-being;

• Steps to identify and mitigate unintended consequences of quality or performance measures;

• Approaches that promote good stewardship of resources and cost-effective care.

We welcome submissions that are provocative and promote informed debate. Perspectives in JASN are expected to be evidence-based and well-reasoned, but controversial submissions are welcome.

Please note that the opinions expressed in our pages do not express the policies of the American Society of Nephrology. The editors are active and committed members of the ASN, and we are certainly pleased if perspectives published in our pages contribute to development of ASN advocacy goals. Nevertheless, the Society leadership has regularly reaffirmed a deep commitment to editorial independence, for which we are deeply grateful.

Disclosures

J.P. Briggs reports Advisory or Leadership Role: peer review editor for PCORI beginning September 1, 2022 (paid an honorarium). N.R. Powe reports Advisory or Leadership Role: Hennepin Health Care Research Institute, Patient Centered Outcomes Research Institute, Portland VA Research Foundation, Robert Wood Johnson Foundation, University of Washington, and Vanderbilt University. T. Hostetter reports: Consultancy: Center for Dialysis Innovation, Otsuka, and University of Washington; Honoraria: Otsuka; Patents or Royalties: Tricida Stock Options; and Advisory or Leadership Role: Center for Dialysis Innovation, Tricida, and University of Washington.

Funding

None.

Author Contributions

T. Hostetter and N.R. Powe conceptualized the editorial; J.P. Briggs wrote the original draft; and J.P. Briggs and N.R. Powe reviewed and edited the manuscript.