American Society of Pediatric Nephrology
Each year, the American Society of Pediatric Nephrology (ASPN) Public Policy Committee identifies and discusses legislative and regulatory issues that may affect the pediatric kidney community and that will help meet ASPN’s goal to support access to care to high quality care for pediatric kidney patients. ASPN has set the following goals to advance this overarching goal in 2024:
GOAL: Cultivate existing and new congressional champions to position ASPN’s advocacy to succeed, regardless of which political party is in control in Washington.
- Hold a virtual Capitol Hill Day on February 29 in support of ASPN’s policy priorities.
- Schedule meetings for Hill offices on key policy priorities throughout the year.
- Participate in virtual and in-person fly-ins with partner organizations as the opportunity arises.
GOAL: Advocate for the highest attainable funding level for the National Institutes of Health (NIH) in the enactment of final appropriations for fiscal year (FY) 2024 and FY 2025, specifically promoting funding for pediatric kidney disease research.
- Support the research community’s FY 2025 appropriations request for NIH and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).
- Draft new appropriations report language for FY 2025, which we will work to ensure is included in both the House and Senate Labor, Health and Human Services, and Education Appropriations bills.
- Send a letter and submit outside witness testimony to congressional appropriators in support of ASPN’s report language requests.
- Continue to work with the NIDDK, the National Heart, Lung and Blood Institute (NHLBI), the National Institute on Child Health and Development (NICHD), the National Institute on Minority Health and Health Disparities (NIMHD) and other relevant Institutes to elevate issues related to research and pediatric kidney disease, specifically the role that social determinants of health and racial and ethnic inequities play in pediatric kidney disease.
- Continue to work with NIDDK to support pediatric nephrology specific research and the research workforce, including specific follow up from the Kidney Interagency Coordinating Committee Meeting.
GOAL: Continue to provide guidance and engage with the Centers for Medicare & Medicaid Services (CMS) on pediatric issues related to the ESRD Prospective Payment System (PPS), the Quality Incentive Program (QIP) and other quality issues.
- Continue to meet with CMS to ensure that the pediatric nephrology voice is heard, including ensuring the ESRD PPS Transitional Pediatric ESRD Add-on Payment Adjustment (TPEAPA) is implemented appropriately.
- Work with CMS to update the hospital-based cost report to include pediatric-specific ESRD staff.
- Monitor discussions to revise MACRA and CMS’ Quality Payment Program to ensure that members have meaningful methods to participate and to provide guidance on new payment models, particularly for pediatric nephrology-related items.
- Advocate for the appropriate expansion of the Medicare telehealth benefit.
- Monitor and engage when appropriate on nephrology-specific alternative payment models.
- Nominate members for CMS Technical Expert Panels (TEPs), which work to develop new ESRD quality measures prior to their inclusion in the QIP.
- Work with the Renal Physicians Association (RPA) and National Kidney Fund to maintain and improve physician-level renal quality measures.
GOAL: Advocate to ensure transplant policies prioritize the needs of pediatric kidney disease patients.
- Monitor advocate for transplant legislation to ensure that the needs of pediatric ESRD patients are considered, including the Living Donor Protection Act and the Living Donor Tax Credit Act.
- Work with Congress to introduce legislation to address the gaps in coverage for pediatric patients in the recent immunosuppressive drug coverage final rule.
- Advocate for appropriate funding for the Health Resource and Service Administration’s (HRSA) implementation of the OPTN Modernization Initiative.
- Ensure that HRSA is considering the needs of pediatric kidney transplant patients in its OPTN Modernization Initiative.
- Collaborate with the Transplant Interest Group (TIG) to ensure that OPTN consider the impact of its policies on pediatric kidney patients.
GOAL: Advocate to ensure that ASPN’s concerns about access, pricing and shortages are considered in drug pricing policies.
- Support policies that improve pediatric patient access to appropriate therapies.
- Engage with the Food and Drug Administration (FDA) and CMS to promote access to necessary drugs and formulations of drugs without onerous prior authorization requirements for children with kidney disease.
- Engage with congressional champions and the administration as appropriate to address access barriers to compounded medicines taken by pediatric kidney disease patients.
GOAL: Advocate for policies to support the pediatric nephrology workforce.
- Support the FY 2025 request for the Pediatric Subspecialty Loan Repayment Program.
- Monitor and weigh in on workforce issues, including loan repayment, graduate medical education, and other relevant initiatives.
- Explore legislative solutions to support and expand the pediatric nephrology workforce.
GOAL: Monitor legislation and federal initiatives that impact pediatric kidney patients.
- Work with the FDA to educate members on the agency’s processes and procedures and take steps to strengthen our partnership and engagement with the agency.
- Monitor the implementation of the Affordable Care Act and weigh in where appropriate on proposed rules and legislation.
- Monitor legislation and other federal initiatives, such as Healthy People 2030, taking advantage of opportunities to weigh in or provide public comment on such initiatives.
- If Congress introduces legislation to reform entitlement programs such as Medicare or Medicaid, continue to advocate that pediatric kidney patients have access to necessary subspecialty care.
- Monitor for opportunities to raise awareness of inequalities in nephrology care access and funding for research to eliminate underlying drivers of unequal access to nephrology care.
- Support efforts to ensure appropriate access to kidney care, including dialysis services, for undocumented children.
GOAL: Build support for pediatric kidney priorities through coalitions.
- Work with CMS and kidney community groups, such as the Kidney Care Partnership (KCP), to inform its membership about MIPPA implementation, CROWNWeb, and any other relevant issues that should arise.
- Foster relationships with other organizations, such as the Children’s Hospital Association (CHA), American Academy of Pediatrics (AAP), American Society of Nephrology (ASN), RPA, and National Renal Administrators Association (NRAA).