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Rare kidney disease bill poised to be reintroduced
KING OF PRUSSIA, Pa. (JULY 6, 2023)— Sixty-five rare kidney disease (RKD) patients and caregivers are traveling from 21 states to Washington, D.C. next week to participate in NephCure’s annual Rare Kidneys on the Hill Day, marking the highest in-person attendance to date for the event. On July 11 and 12, these advocates will meet with their members of Congress to push for more research funding, enhanced diagnostics, and increased access to innovations in treatments and care. Chief among the advocates’ requests will be urging support for the New Era of Preventing End-State Kidney Disease Act, a bill which is expected to be reintroduced in Congress in the near future.
“We are honored to be joined by a record number of patients and families this year,” said Josh Tarnoff, NephCure’s Chief Executive Officer. “Sharing their personal stories with their representatives in Congress is critical to making policy changes that improve rare kidney disease patient care. The patient voice is vital to our efforts as a community.”
Rare Kidneys on the Hill Day kicks off on July 11 with a Rally Dinner, providing participants an opportunity to connect with fellow RKD advocates and practice for their meetings.
The following day, July 12, participants will meet with members of the House of Representatives and Senate to build relationships and educate members on rare kidney disease issues. In addition, participants will attend a Congressional Briefing and lunch designed to educate members and their staff on RKD issues.
A primary focus during advocate meetings will be to urge support for the New Era of Preventing End-Stage Kidney Disease Act. The bill was developed in collaboration with rare kidney disease stakeholders and introduced in the 117th Congress. Building on the momentum from the previous Congress, the bill is expected to be reintroduced this Congress and will be led by key congressional champions.
The bill would improve, develop, and deliver health care services to people with rare kidney disease by supporting research and promoting early intervention and diagnostic protocols; addressing health disparities in rural and disproportionately affected communities; and enhancing provider education. Together these interventions will improve kidney health outcomes and reduce dialysis and transplantation costs. The US government spends $130 billion annually on patients with kidney disease—nearly a quarter of Medicare’s total budget.
Other policy asks made by advocates will include the following: Increase NIH and CDC funding for medical research and education and awareness activities, continue to include focal segmental glomerulosclerosis and nephrotic syndrome in defense research funding, cosponsor the Living Donor Protection Act of 2023 H.R. 2923/S. 1384, cosponsor the Safe Step Act, H.R. 2630/ S. 652, and cosponsor the HELP Copays Act H.R. 830/S. 1375.
NephCure develops Rare Kidneys on the Hill Day programming and policy priorities in accordance with its mission and in collaboration with the patient community.
Support for NephCure’s Rare Kidneys on the Hill Day 2023 is generously provided by platinum sponsors Calliditas Therapeutics, Novartis, and Travere Therapeutics, silver sponsors Boehringer Ingelheim, Chinook Therapeutics, and Vertex, and bronze sponsor, Otsuka.
All rare kidney disease community members are encouraged to participate from home throughout the week by following @NephCure and sharing their RKD stories using #RKDWeek2023.
To learn more about NephCure’s Rare Kidneys on the Hill Day, visit resources.nephcure.org/hillday2023.
About NephCure:
NephCure’s mission is to empower people with rare, protein-spilling kidney disease to take charge of their health, while leading the revolution in research, new treatments, and care. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a US tax exempt 501(c)(3) public charity.
