{"id":27388,"date":"2024-03-26T14:27:03","date_gmt":"2024-03-26T18:27:03","guid":{"rendered":"https:\/\/nephcure.org\/?page_id=27388"},"modified":"2024-07-18T15:29:51","modified_gmt":"2024-07-18T19:29:51","slug":"prioridades-politicas-de-nephcure","status":"publish","type":"page","link":"https:\/\/nephcure.org\/es\/get-involved\/advocacy\/nephcure-policy-priorities\/","title":{"rendered":"Prioridades pol\u00edticas de NephCure"},"content":{"rendered":"
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Home<\/a><\/span> \/ Get Involved<\/a><\/span> \/ Advocacy<\/a><\/span> \/ NephCure Policy Priorities<\/span><\/span><\/div>\n\n
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NephCure Policy Priorities<\/h1>\n\n\n\n

There are approximately 150 different types of rare kidney diseases, each affecting between 20,000 to 200,000 individuals nationwide. These are the most aggressive forms of kidney diseases that, if left undiagnosed or are not treated properly, often lead to kidney failure. Unfortunately, the causes of rare kidney disease are poorly understood, and many have no FDA-approved treatments. NephCure Policy Priorities help support and bring awareness to rare kidney diseases and help patients get the care they need. <\/p>\n\n\n\n

Rare kidney diseases contribute to the more than $124.5 billion spent on treating Medicare beneficiaries with chronic kidney disease, including the $42.9 billion spent on treating people with end-stage kidney disease (ESKD), yet there has been little to no innovation in diagnostics or upstream treatments for kidney disease patients since the 1940\u2019s and 1950\u2019s when dialysis and immunosuppressants became commonplace. These treatment and diagnostic barriers, coupled with the lack of rare kidney disease awareness and education, often cause a delay in diagnosis that can result in a rapid decline in kidney function and, ultimately, kidney failure. <\/p>\n\n\n\n

For many rare kidney disease patients, their only options are dialysis, transplant, or death. Additionally, disproportionately affected communities face a lack of adequate diagnostics and treatment. In fact, Black Americans are up to five times more likely to develop kidney disease than white Americans.<\/p>\n\n\n

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Cosponsor the New Era for Preventing End-Stage Kidney Disease Act<\/p>\n\n<\/div><\/div>\n\n

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Increase Funding for Medical Research and Education and Awareness Activities<\/p>\n\n<\/div><\/div>\n\n

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Continue to Include Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome in Defense Research Activities<\/p>\n\n<\/div><\/div>\n\n

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Cosponsor The Living Donor Protection Act (LDPA) of 2023, H.R. 2923\/S. 1384 <\/p>\n\n<\/div><\/div>\n\n

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Cosponsor The Safe Step Act, H.R. 2630\/S. 652<\/p>\n\n<\/div><\/div>\n\n

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Cosponsor the HELP Copays Act (H.R. 830\/S. 1375)<\/p>\n\n<\/div><\/div>\n<\/div>\n<\/div>\n\n

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Cosponsor the New Era for Preventing End-Stage Kidney Disease Act:<\/h2>\n\n\n\n

Patients with or at risk for chronic and rare kidney disease are navigating a current system that pushes them to move to Medicare and late-stage coverage to manage their condition in costly ways. Our current incentive structure essentially keeps patients with kidney disease in the waiting room until it is too late. Gaps in early detection programs and insufficient diagnostic measures then lead to higher downstream healthcare costs and worse health outcomes for patients.<\/p>\n\n\n\n

Solution<\/strong>: The New Era of Preventing End-Stage Kidney Disease Act was first introduced in the 117th<\/sup>Congress to respond to the growing need to reshape the way we treat a disease that impacts millions of Americans and costs billions every year. Building on the momentum from the previous Congress, the bill is expected to be reintroduced this Congress by Representatives Gus Bilirakis (R-FL) and Terri Sewell (D-AL). <\/p>\n\n\n\n

This critical bill would improve, develop, and deliver health care services to people with rare kidney disease by supporting research, promoting early intervention and diagnostic protocols; addressing health disparities in rural and disproportionately affected communities; improving provider education; and reducing dialysis and transplantation costs.<\/p>\n\n\n

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Increase Funding for Medical Research and Education and Awareness Activities<\/strong><\/h4>\n<\/figure>\n\n\n
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It is crucial that the Department of Health and Human Services continues to expand on its critical work on improving diagnostics and treatments for rare kidney disease. Investment into the National Institutes of Health has provided the research that has led to the development of the Kidney Health Gateway Project and the increase in accessible clinical trials.<\/p>\n\n\n\n

For FY 2024, the community is asking Congress to:<\/p>\n\n\n\n