“New Era for Preventing End-Stage Kidney Disease Act” Could Improve Rare Disease Kidney Care

The New Era for Preventing End-Stage Kidney Disease Act (H.R. 7506) is a new Act sponsored by Reps Gus Bilirakis and G.K. Butterfield. This Act would transform care for those affected by rare kidney disease.

The Act

The Act will support increased education and awareness for the disparities of kidney health among people of color. It will also help to advance research for rare kidney disease generally and reduce the diagnostic barriers and barriers to treatment that patients face.

The developers of this legislation further hope that it will empower patients to better understand their own symptoms, and navigate finding proper care.

This Act could help to improve health equity, conserve healthcare resources, improve treatment, and ultimately, save lives.

Rare Kidney Diseases

There have been essentially no major breakthroughs in kidney disease research since way back in the 1960s. During the 1960s, dialysis was developed and the use of immunosuppressants became widespread. Patients today have extremely limited options, which include these approaches and a kidney transplant.

Further, a lack of education and awareness has led to increased barriers for patients. It’s difficult to get a diagnosis, let alone an adequate treatment plan. Delayed diagnosis leads to a rapid decline and negative outcomes. A part of this issue is how difficult it can be to find a nephrologist who understands rare kidney diseases.

Individuals of color have been documented to be disproportionately impacted by rare kidney diseases. For example, African Americans are around 4 to 5 times more likely to face end stage kidney disease (ESKD) compared to white Americans.

NephCure Kidney International (NephCure)  

NephCure is working with Congress to advance this bill. Their goal is to revolutionize treatments for rare kidney diseases and prevent end stage kidney disease.

NephCure is encouraging patients, advocates, caregivers, and others interested in improving outcomes for rare kidney diseases to join the NephCure Action Network. This group of advocates is committed to informing policymakers on rare kidney diseases and the needs of this population.

You can read more about this act and what it could mean for patients here.

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