Public Policy Committee

American Society of Pediatric Nephrology

2024 Goals

 

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.

TACTICS:

• 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.

TACTICS:

• 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.

TACTICS:

• 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.

TACTICS:

• 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.

TACTICS:

• 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.

TACTICS:

• 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.

TACTICS:

• 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.

TACTICS:

• 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).

Overview of ASPN’s 2022 Public Policy Agenda

At the beginning of each year, the ASPN Public Policy Committee (PPC) identifies and discusses various legislative and regulatory issues that may affect the pediatric kidney community.  Depending on the Society’s past progress on previous priorities, paired with identifying new and emerging health policy legislation, the Society settles on three to four priority issues that define ASPN’s public policy agenda. 2021 was an eventful year, with the following activities:

Promoting and Increasing Funding for Biomedical Research

• ASPN joined forces throughout the year with the biomedical research community and patient advocacy groups to urge Congress to make National Institute of Health (NIH) funding a priority in the Fiscal Year (FY) 2022 budget. While Congress has yet to pass a final FY2022 appropriations bill, the House and Senate versions proposed increases to NIH of $6.5 billion and $5 billion, respectively.
• For the ninth year in a row, ASPN, together with the American Society of Nephrology (ASN), organized an organizational sign-on letter directed specifically at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) funding for FY2022. ASPN and ASN garnered organizations’ signatures on this letter.
• ASPN continues to participate in the Friends of NIDDK, Friends of the National Institute of Child Health and Human Development (NICHD), and Friends of the National Institute on Minority Health and Health Disparities (NIMHD) advocacy coalitions.
• For the 22nd year, ASPN was successful in ensuring that language directed at pediatric nephrology issues was included in the House or Senate Labor-Health and Human Services (HHS) appropriations report. For FY 2022, we secured language in both the House and Senate reports. Both the House and Senate language notes the lack of pediatric nephrology clinical trials and the need to diversify the pediatric nephrology workforce, and the House language also requests a report on the use of telehealth technology for the provision of pediatric ESRD care.
• President Joe Biden proposed the creation of a new research accelerator called the Advanced Research Projects Agency for Health (ARPA-H) in his FY 2022 budget request. ASPN engaged on this issue when appropriate to ensure that the new entity will help advance our understanding of pediatric kidney disease.

ESRD PPS

• ASPN continues to work with its membership and the Centers for Medicare & Medicaid Services (CMS) to improve the formula used to pay pediatric facilities. We held several meetings with administration and CMS staff to discuss options to improve pediatric ESRD payment to reflect the resources required to deliver care to pediatric patients. Thanks to ASPN’s advocacy, the CY2023 ESRD Rule included an extensive request for information on reimbursement for pediatric ESRD services. Information provided by ASPN is expected to guide CMS implementation of reforms to provide more adequate reimbursement for these services.
• ASPN continues to escalate its issues with PPS, both with CMS and Congress, holding several conference calls and scheduling desk-side briefings on Capitol Hill to ensure that key lawmakers are aware of ongoing issues with the pediatric facility bundle.
• ASPN continues to nominate its members to sit on relevant advisory panels and Eileen Brewer, Michael Somers, and Jesse Roach participated in the ESRD PPS TEP in December, 2021.

QIP and Quality Measures

• ASPN remains in a key position as the expert with respect to pediatric quality measures.
• ASPN remains a member of the National Quality Forum (NQF) and three pediatric nephrologists serve on the NQF Renal Standing Committee.

Affordable Care Act (ACA) Advocacy

• ASPN continues to support and monitor the implementation of the ACA by:

• • Continued monitoring and reporting on implementation of health insurance exchanges in states.
• ASPN continues to support efforts to protect the Medicaid expansion and patient protections included in the ACA.

Advocacy Scholars

• 2021 marked the eleventh year for the John E Lewy Foundation for Children’s Health Advocacy Scholars Program.  Scholars participated virtually in ASPN’s Spring and Fall Virtual Capitol Hill Days.
• The current scholars, along with those who have already graduated from the program, are active participants of ASPN’s PPC, and have taken on leadership roles within PPC and other ASPN committees.

Other Highlights

• ASPN sent a letter to the Biden-Harris transition team asking for their support of the Advancing American Kidney Health Initiative and improved pediatric ESRD reimbursement.
• ASPN responded to a request for information from the Office of Management and budget on the assessment of whether policies equitably serve all individuals, including the underserved. ASPN’s comments focused on the disparate rates of transplantation among children with ESRD, inadequate reimbursement for pediatric nephrology services, and the social determinants of health for children with kidney disease.
• ASPN held two successful virtual Capitol Hill Days in March and October.
• ASPN continued to support the Living Donor Protection Act that was reintroduced on a bipartisan basis in both the House and Senate.  In addition, ASPN continued to support the implementation of an immunosuppressive drug coverage benefit, which was passed by Congress as part of the end-of-year legislative package in 2020.
• ASPN commented on the 2022 Physician Fee Schedule, which thanks to ASPN advocacy, included revaluing of ESRD monthly capitation payment services cod 90954, resulting in an increase of the RVU from 15.98 to 20.86.
• ASPN submitted a joint letter with the Renal Physicians Association to authors of the CONNECT Act, urging the maintenance of the quarterly face-to-face clinical assessment requirement for home dialysis patients.
• ASPN met with the NIH Center for Scientific Review and submitted more than twenty pediatric nephrologists to be potential reviewers of pediatric nephrology research proposals.
• ASPN advocated, along with other pediatric clinical care partners, for funding of the Pediatric Subspecialty Loan Repayment Program.
• ASPN submitted a letter to Congressional leadership on its telehealth priorities, which included maintenance of the quarterly face-to-face clinical assessment requirement for hone dialysis; elimination of geographic and originating site restrictions; payment parity; and telehealth research.
• ASPN submitted comments to NIDDK in response to NIDDK’s Strategic Plan.
• ASPN submitted two letters to authors of the Cures 2.0 Act, Congresswoman Diana DeGette (D-CO) and Congressman Fred Upton (R-MI), on the proposed Advanced Research Projects Agency for Health (ARPA-H) and ways for the Act to better serve pediatric nephrology patients.
• ASPN submitted comments to Representative Blumenauer (D-OR) on the reintroduction of the BETTER Kidney Care Act, which ultimately excluded pediatric patients, per our request.

Building on the 2021 agenda’s successes, the 2022 agenda includes a number of legislative and regulatory issues that the Society will continue to tackle.  ASPN’s advocacy efforts are flexible, often changing to reflect current Washington debate and utilizing the membership’s own advocacy expertise to appropriately match and most effectively communicate our message to the right people.  With this in mind, the ASPN will focus on targeted legislative and regulatory work including appropriations and Medicare reimbursement as well as quality issues at the federal level.  In 2022, ASPN will expand and strengthen its agenda to educate a new generation of society members to engage with the PPC and work with federal agencies, including CMS and the NIH, on a broader level.

Legislative

• As the only representative of pediatric nephrology patients, it remains essential that ASPN representatives visit the Hill and engage with Members of Congress to continue current relationships and build new ones with Committee staff and key members of Congress.  ASPN will hold a virtual Capitol Hill Day in the spring and will schedule meetings for ASPN members who wish to meet with their representatives outside of our advocacy day.
• ASPN will continue to advocate for a pediatric-specific modifier to be applied to the ESRD bundled payment.
• ASPN will explore legislative solutions to support and expand the pediatric nephrology workforce.
• ASPN will remain engaged in the telehealth conversation, emphasizing the unique telehealth needs of children with kidney disease.
• If Congress introduces legislation to reform entitlement programs such as Medicare or Medicaid, ASPN will continue to advocate that pediatric kidney patients have continued access to necessary subspecialty care.

Promoting Biomedical Research Funding

• ASPN supports the highest attainable funding level for NIH and fight for the enactment of final appropriations for FY2022 and increases for federal research programs in the FY 2023 budget, while identifying alternative funding streams of interest to members.
• ASPN will draft new appropriations report language in 2022 for FY2023. The Society will work to ensure that this appropriations report language is included in both the Senate and House Labor, Health and Human Services, Education Appropriations bills.
• ASPN will work with the NIDDK, the National Heart, Lung, and Blood Institute (NHLBI), NICHD, NIMHD and any other relevant Institutes within the NIH to elevate issues related to research and pediatric kidney disease, specifically the role social determinants of health and racial and ethnic inequities play in kidney disease.

Kidney Specific Legislation

• ASPN will continue to advocate for the Living Donor Protection Act and actively support its passage this Congress.

Drug Shortages and Pricing

• Drug pricing will remain on Congress’ agenda this year.  ASPN will advocate to ensure that the Society’s concerns about access, pricing and shortages are considered during the development of any legislative solutions.  ASPN will support policies that improve pediatric patient access to appropriate therapies.

Pediatric Nephrology Work Force

• ASPN will monitor closely and weigh in on workforce issues, including loan repayment, graduate medical education and any other relevant initiatives.

Advancing Health Equity

• ASPN recognizes the disproportionate impact of kidney disease on communities and children of color and advocates to enact policies that will advance health equity. ASPN will 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.

 

Regulatory

MIPPA Implementation

• ASPN will continue to develop its relationship with CMS to ensure that the pediatric nephrology voice is heard.
• ASPN will continue to expand its leadership on pediatric issues within the ESRD and chronic kidney care community.
• ASPN will continue to provide guidance to and engage with CMS on pediatric issues related to the PPS and QIP, including the development of pediatric-specific modifier to the ESRD bundled payment.
• ASPN will collaborate with the National Renal Administrators Association (NRAA) on member education activities related to Medicare payment and dialysis.

Quality Issues

• ASPN will continue to nominate members for CMS TEPs, which work to develop new ESRD quality measures prior to their inclusion in the QIP.
• ASPN members will work closely with RPA to maintain and improve physician-level renal quality measures.
• ASPN will continue to ensure that at least one member of the NQF’s Renal Standing Committee is a pediatric nephrologist.

Medicare Physician Payment

• ASPN will monitor the implementation of MACRA, the legislation replacing the SGR, to ensure members have meaningful methods to participate and to provide guidance on new payment models, particularly for pediatric nephrology-related items.
• ASPN will continue to monitor and engage when appropriate on nephrology-specific alternative payment models.
• ASPN will continue to advocate for the appropriate expansion of the Medicare telehealth benefit.

Drug Shortages and Pricing

• ASPN will continue to engage with the FDA and CMS to promote access to necessary drugs and formulations of drugs for children with kidney disease.

Monitoring and Coalition Building

• ASPN will work with the FDA to educate members on the agency’s processes and procedures and take other steps to strengthen our partnership and engagement with the agency.
• ASPN will continue to monitor the implementation of the ACA and weigh in where appropriate on proposed rules and legislation.
• ASPN will 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.
• ASPN will continue to 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 should they arise.
• ASPN will continue to foster its relationship with other organizations, such as the Children’s Hospital Association (CHA), American Academy of Pediatrics (AAP), American Society of Nephrology (ASN), Renal Physicians Association (RPA) and National Renal Administrators Association (NRAA).
• The JELF Scholars will work with CRD Associates to develop content for ASPN’s advocacy social media accounts.
• The Society will monitor and advocate for any other relevant issues as necessary.