Advocacy Push on Capitol Hill for Rare Kidney Disease Legislation

Advocacy Push on Capitol Hill for Rare Kidney Disease Legislation

Members of the American Kidney Fund’s Rare Kidney Disease Action Network (RKDAN) and healthcare professionals are actively engaging lawmakers on Capitol Hill to advocate for essential legislation focused on rare kidney diseases. This initiative is crucial for improving research, diagnosis, and treatment protocols that affect numerous individuals living with these conditions.

The Role of RKDAN in Advocacy Efforts

RKDAN was established to amplify the voices of those impacted by rare kidney diseases such as IgA nephropathy (IgAN) and focal segmental glomerulosclerosis (FSGS). They connect members dealing with various genetic kidney illnesses, fostering a supportive community where individuals can share their experiences, educate themselves on relevant policies, and advocate for necessary changes in healthcare.

Legislative Goals: H.R. 6790 and H.R. 3876/S. 2323

New Era of Preventing End-Stage Kidney Disease Act

The advocates' primary focus is to garner congressional support for the New Era of Preventing End-Stage Kidney Disease Act (H.R. 6790). This legislation aims to enhance health care services for rare kidney conditions and establish research centers dedicated to studying these diseases. These centers would play a vital role in understanding the causes and treatments of kidney diseases while raising awareness, particularly in underserved areas.

Access to Genetic Counselors Act

Furthermore, RKDAN is urging support for the Access to Genetic Counselors Act (H.R. 3876/S. 2323), which would allow Medicare to reimburse genetic counselors directly. This is pivotal as genetic counselors provide essential support in understanding the genetic factors contributing to chronic kidney disease, yet are not recognized as healthcare providers by Medicare. This discrepancy limits patients’ access to critical information regarding their health.

Call to Action from AKF Leaders

LaVarne A. Burton, President and CEO of AKF, emphasized the urgency of these legislative efforts. She stated, "Rare kidney disease is often overlooked in healthcare discussions, and the passage of these bills is vital to foster a broader understanding among healthcare providers. Increased awareness can significantly enhance treatment protocols, leading to better outcomes for patients with rare kidney diseases."

The Importance of Communication

A recent survey indicated a significant knowledge gap among primary care providers about various kidney diseases compared to nephrologists. This lack of understanding can delay diagnoses and hinder effective treatment options, making it critical for advocates to engage and educate policymakers on these health crises.

Personal Stories Influence Change

Kathy Mitchell, living with IgAN, shared her perspective, stating, "Our ongoing advocacy is essential to informing lawmakers about the realities we face on a daily basis. By sharing our stories, we can advocate for the necessary resources to support research and patient care. Our experiences are compelling and must be part of the dialogue regarding kidney disease policy."

Support from Industry Partners

Support for RKDAN's initiatives comes from various sponsors, including prominent names in the pharmaceutical industry, which demonstrates a collective commitment to advancing kidney health. Their endorsement and resources are instrumental in executing these advocacy events, highlighting the importance of collaboration in driving policy changes.

About the American Kidney Fund

As the leading nonprofit organization addressing kidney disease, the American Kidney Fund (AKF) serves millions of Americans battling kidney issues. With a commitment to effective solutions ranging from prevention to treatment, AKF is known for its impactful programs and transparent operations, ensuring that a significant portion of contributions directly supports its mission of promoting kidney health.

Frequently Asked Questions

What is the goal of the Rare Kidney Disease Advocacy Day?

The goal is to gather support from lawmakers for legislation that improves awareness and treatment options for rare kidney diseases.

Who is involved in RKDAN?

RKDAN comprises individuals living with rare kidney diseases, healthcare professionals, and advocates dedicated to improving policy and care for kidney health.

What are the key pieces of legislation being advocated for?

The key legislations include the New Era of Preventing End-Stage Kidney Disease Act and the Access to Genetic Counselors Act.

How do these laws benefit patients?

These laws aim to enhance healthcare services, increase access to genetic counseling, and improve overall understanding and treatment of rare kidney diseases.

Why is awareness among primary care providers important?

Awareness is essential for timely diagnosis and effective treatment; higher knowledge levels lead to better patient outcomes in managing kidney diseases.

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