Advocates Unite on Capitol Hill to Transform Kidney Disease Care

Advocates Unite on Capitol Hill to Transform Kidney Disease Care

Today, as members of the American Kidney Fund (AKF) and the IgA Nephropathy Foundation gather in Washington, D.C., more than 50 advocates passionate about kidney health rally to champion vital legislative measures. This initiative marks a significant moment in the fight against rare kidney diseases, aimed at enhancing care and raising awareness.

Empowering Patients and Raising Awareness

The rally highlights the urgent need for policies that can provide crucial support to people grappling with rare kidney diseases. Advocates from the Rare Kidney Disease Action Network (RKDAN) are meeting lawmakers to advocate for key pieces of legislation that promise to improve health care services for this underserved community. In particular, they seek to boost awareness and provide protections for living organ donors, ensuring they receive the necessary support and protection from discrimination.

A Call for Legislative Change

LaVarne A. Burton, President and CEO of AKF, stated, "With over 150 different rare kidney diseases, we require more resources dedicated to understanding these conditions. Our legislative focus today is the New Era of Preventing End-Stage Kidney Disease Act, which aims to tackle diagnosis challenges and access to quality health care." This act will address critical needs, including enhancing diagnoses and optimizing care for those affected by rare kidney diseases.

Advocacy Against Discrimination

Another important initiative is the Living Donor Protection Act, which is essential for those who make the selfless choice to donate an organ. "Living donors need protection from insurance discrimination and the flexibility to recover without losing employment or insurance benefits," LaVarne added. Without such protections, many potential donors may feel discouraged from contributing to the life-saving mission of organ donation.

Advocates Highlight Patient Perspectives

Bonnie Schneider, co-founder of the IgA Nephropathy Foundation, expressed the collective sentiment, stating, "Today stands as a powerful reminder that the patient voice is pivotal in effecting change. Legislative barriers hinder our community’s access to a longer, healthier life, and we are here to overcome them." This illustrates the fundamental need for legislative attention in addressing the complexities faced by patients and their families living with kidney diseases.

Key Legislation Overview

The advocates present today discussed several legislative measures that are crucial to improving health outcomes:

• New Era of Preventing End-Stage Kidney Disease Act (H.R. 1518) – Aims to provide comprehensive support through research and early intervention strategies, addressing disparities and improving education among providers to enhance patient care.
• Living Donor Protection Act (S. 1552/H.R. 4583) – Seeks to protect living donors from insurance discrimination and ensures they receive adequate support during recovery periods post-donation.
• Living Donor FMLA Protection Act (H.R. 4582) – Ensures living organ donors can take necessary leave from work without fear of losing their rights or benefits under the Family and Medical Leave Act.

The Role of RKDAN and Patient Experience

AKF's RKDAN plays a significant role in amplifying the voices of individuals affected by rare kidney diseases. This initiative encompasses individuals living with various conditions, including polycystic kidney disease (PKD) and lupus nephritis. By training advocates about policy issues, RKDAN empowers them to educate lawmakers and the public about their experiences.

Veronica "Ronni" Behrend, a kidney disease advocate and financial coordinator, echoed the importance of raising awareness. "Being involved in advocacy not only sheds light on these conditions but also mobilizes efforts for better funding and healthcare access. Together, we can make a meaningful difference for those impacted by these often overlooked health concerns."

Concluding Remarks

As legislators engage with this dedicated group of advocates, it’s essential to recognize the societal impact of kidney disease and the ongoing efforts of organizations like AKF and the IgA Nephropathy Foundation. By promoting awareness and advocating for legislative changes, the hope is to alter the course of kidney care for future generations.

Frequently Asked Questions

What are the main goals of the American Kidney Fund's advocacy day?

The main goals are to gain support for legislation that improves healthcare for rare kidney disease patients and protects living organ donors.

What is the New Era of Preventing End-Stage Kidney Disease Act?

This legislation aims to enhance research, improve early diagnosis, and address health disparities in kidney care.

How does the Living Donor Protection Act benefit donors?

This act aims to protect living donors from insurance discrimination and ensures they have necessary support during their recovery.

Who is involved in the Rare Kidney Disease Action Network?

The network includes patients, advocates, and healthcare professionals dedicated to raising awareness and improving policies for rare kidney diseases.

Why are advocacy days important for kidney disease patients?

Advocacy days raise awareness, push for legislative change, and provide patients with a platform to voice their needs and challenges.

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