Advancing a Legacy: Advocacy in Pediatric Nephrology

  • 1 Kaye Brathwaite, MD, is a pediatric nephrology fellow & NIDDK T32 Diversity Supplement Awardee, Children's Hospital at Montefiore Medical Center, Bronx, NY. Jill Krissberg, MD, is a Tashia and John Morgridge Endowed Postdoctoral Fellow, Maternal and Child Health Research Institute at Stanford; Department of Pediatrics, Division of Pediatric Nephrology, Stanford School of Medicine, Lucile Packard Children's Hospital, Palo Alto, CA. Alex Kula, MD, is a third year pediatric nephrology fellow at the Seattle Children's Hospital, University of Washington, Seattle, WA.
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For pediatric nephrologists, the feeling of walking into a pediatric dialysis unit is like no other. On any given day, we get to see patients playing with a new toy, singing their favorite song, or working hard on their homework. With our observation of children on dialysis playing and smiling, it's easy to forget the toll dialysis takes on them and their family. Many families uproot their lives or drive hours back and forth for each session because the nearest pediatric unit is hundreds of miles from home. Young children face disruption in their education and social lives during developmentally vulnerable times. Patients struggle with keeping up with their schoolwork, learning to take pills, and finding foods they like that fit their dietary restrictions, all while coping with a chronic illness.

The American Society of Pediatric Nephrology (ASPN) is the primary professional society for pediatric nephrologists in the United States. Although many components of the ASPN share a common goal with those of the ASN, children with chronic kidney disease (CKD) have unique needs that differ from those of adults and thus require their own voice. ASPN's mission is to provide that voice for the needs of children affected by kidney diseases and the providers, nurses, nutritionists, and other specialists who care for them.

An important part of the ASPN mission is the John E. Lewy Fund for Children's Health (JELF) Advocacy Scholars Program, which was started in 2009 in honor of John E. Lewy's dedication to advocacy, science, and education in pediatric nephrology. Dr. Lewy was a major figure and a lifetime advocate for pediatric nephrology. He served as president of ASPN, where he fought for health equity, research dissemination, and improving access to care for children with kidney disease. His relationship with regulatory and governmental figures laid the groundwork for the ongoing advocacy efforts of the ASPN. Today, JELF scholars continue in his legacy and are recruited bi-annually to pursue their own passion for advocacy, their patients, and nephrology.

JELF scholars learn how to be advocates through formal curricula and hands-on legislative skills. They participate in the annual American Academy of Pediatrics (AAP) Legislative Conference to formally learn advocacy skills. The scholars also learn about legislative policy and regulatory processes, public insurance programs, health disparities, and racism in healthcare—all through the lens of the pediatric nephrologist. They then practice these skills alongside other experts in the field by participating in regular advocacy Capitol Hill days, and in similar fashion to the ASN's Policy and Advocacy Committee Internship Program, JELF scholars serve as trainee members of the ASPN's Public Policy Committee to stay up to date on and guide new policies that affect pediatric kidney patients. They participate in advocacy in a complimentary and coordinated function with the ASN, most specifically by participating in the Annual Kidney Community Advocacy Day, co-sponsored by ASN, the National Kidney Foundation (NKF), and the American Association of Kidney Patients (AAKP). Held each fall, this event brings together dozens of kidney health advocacy groups and institutions to advocate about specific topics with elected officials in Washington, DC. All these components together help teach scholars about the needs of the pediatric and adult kidney health communities and how to actualize change in these arenas.

Since there are similarities in the issues affecting patients with kidney disease in adults and children, and because childhood kidney disease is often chronic and extends into adulthood, it is important that the JELF scholars work in conjunction with ASN on advocacy issues. For example, both children and adults benefit from advocacy efforts to provide equitable care, target disparities in access to kidney transplantation, and dismantle racial bias in clinical practice. More recently, this included removal of race from kidney function estimation equations and support of anti-racism and diversity in nephrology. During the height of the COVID-19 pandemic, JELF scholars continued their important work via virtual forums and advocated for COVID-19-specific legislation: research funding focusing on COVID-19 and its associated kidney outcomes and health disparities and expansion of telehealth services. Similar to adult nephrology, pediatric nephrology is facing a severe workforce shortage. Scholars advocate for increasing and diversifying the nephrology workforce—an initiative important to both adult and pediatric providers.

In addition, JELF scholars continue to strive to highlight the specific needs of pediatric patients with kidney disease. Currently, pediatric patients with end-stage kidney disease are the only children covered by Medicare insurance. Thus, scholars meet with leadership in the Centers for Medicare & Medicaid Services (CMS) to understand the payment process, to increase reimbursement for pediatric nephrologists, and to highlight the unique needs of pediatric patients and their providers, such as limited access to age-appropriate kidney replacement therapy, a need for specialized personnel (e.g., child life specialists, dieticians, teachers), and expertise in running dialysis units that cater to children. Scholars also meet with officials from the National Institutes of Health (NIH) on areas relevant to pediatric nephrology to discuss continued support of research of this special population and to help recruit to the workforce (Table 1).

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JELF also incorporates its scholarship on a local level by contributing to advocacy efforts at home institutions. Often inspired by the patients seen in their clinics, scholars are particularly driven to improve health equity and access to care for children living with kidney disease. For example, the current work of one senior JELF scholar focuses on understanding and addressing food insecurity in children with kidney disease and how to effectively connect much-needed resources to patients.

All scholars are paired with a mentor throughout their 2-year term to aid in development and implementation of their advocacy goals. This mentorship also helps cater new skills to future work after completion of the program. JELF scholars become expert advocates in the pediatric kidney disease community—often continuing their roles in public policy, with some going on to work in governmental roles after this unique training. As with education and research, advocacy through public policy is an area that is much needed to develop the field of pediatric nephrology, particularly given the difficulty of getting pediatric-specific needs heard among the millions of adult patients living with kidney disease.

All patients treated as children with CKD will inevitably grow to become adults with CKD. Moreover, many of the origins of adult-onset CKD begin in childhood. As such, the work of JELF scholars is both separate and complimentary to parallel advocacy efforts through ASN. The JELF Advocacy Scholars Program will train future advocates who will see to the unique needs of our youngest patients with CKD while developing new strategies to reduce the number, and severity, of adults with CKD.

JELF scholars continue to strive to highlight the specific needs of pediatric patients with kidney disease.

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