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NephCure Action Network Members Help Enact Sections of New Era Bill into Law

NephCure thanks our NephCure Action Network (NCAN) members for helping to make our end-of-year legislative accomplishments possible. As 2022 and the 117th Congress drew to an end, Congress passed its fiscal year (FY) 2023 funding through an omnibus package, which included some hard-fought NephCure policy priorities.

The key to this accomplishment was the collaborative effort between the advocacy team, external partners, and most of all, NephCure’s community of stakeholders — including patient volunteers, families, health care professionals, and researchers. Their meetings, phone calls, letters, and other grassroots activities helped educate lawmakers about rare kidney disease (RKD) and the need for improved funding for research, treatments, and health care services.

Within the omnibus package, focal segmental glomerulosclerosis (FSGS) and nephrotic syndrome were included as eligible conditions to participate in the Department of Defense Peer-Reviewed Medical Research Program (DOD PRMRP).

The DOD PRMRP was established in 1999 to support research across the full range of science and medicine, with an underlying goal of enhancing the health, care, and wellbeing of military service members, veterans, retirees, and their family members. It continues to serve as an additional avenue for accelerating critical research on rare kidney diseases for the development of lifesaving treatments for patients.

The omnibus package also included more than $120 billion to fund initiatives supported by NephCure, including organ transplantation, chronic disease education, and minority health and health disparities, among others.

In addition to these wins, two sections taken from the New Era for Preventing End-Stage Kidney Disease Act, which was introduced in Congress last year, were also included and enacted into law!

In the first section, “Diversity in National Institutes of Health (NIH) Kidney Disease Research Populations,” the Appropriations Committee directs the NIH to submit an update on its research related to kidney disease, including research focusing on health disparities in the prevention, diagnosis, and treatment of kidney disease among racial and ethnic minority populations, in the FY 2024 Congressional Justification.

The second section, “Rare Kidney Diseases in Health Equity Initiatives,” requests the United States Department of Health and Human Services (HHS) to provide an update on disparities in kidney care and the inclusion of rare kidney diseases in policies and programs aimed at eliminating health disparities in communities of color. The HHS must also submit this update in the FY 2024 Congressional Budget Justification.

Submitting these budget justifications ensures that the agencies are being held accountable for the funds they were given.

Congress also requested that both the NIH and HHS provide updates in specific program improvements in the FY 2024 Congressional Budget Justification on disparities in kidney care and the inclusion of rare kidney diseases in policies and programs aimed at eliminating health disparities in communities of color. NephCure and its partners will be closely monitoring implementation of funding for these programs in the coming months.

NephCure’s advocacy team is currently working with the new members of Congress and other organizations to prepare our policy priorities. Stay tuned for a robust grassroots effort engaging members in various activities, including our second annual Rare Kidney Disease Week this July.

Once again, we thank our community for your commitment and support to helping advance legislative and policy priorities that would improve the lives of those living with rare, protein-spilling kidney disease.

You can learn more and join the NephCure Action Network here. NephCure encourages its members to spend time getting to know their representative and senators.

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