Day

Floor Speech

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Mr. DAVIS of Illinois. Mr. Speaker, I rise today to bring attention to families living with immunoglobulin A nephropathy, also known as lgA nephropathy (lgAN), or Berger's disease, a rare kidney disease that affects approximately 150,000 people in the United States. Earlier this month, my home state of Illinois issued a proclamation signed by the governor proclaiming May 14th as lgA Nephropathy Awareness Day.

lgA nephropathy occurs when lgA, a protein made by the immune system, builds up in the kidneys, causing inflammation that damages kidney tissue, negatively impacting the normal filtering mechanisms of the kidneys. Currently there is no cure for lgAN and 20 percent to 40 percent of lgAN patients will develop end-stage renal disease and need dialysis or a kidney transplant to survive. However, help for these patients is on the way.

In September 2020, several bipartisan Members of Congress, including the Kidney Caucus, the Rare Disease Caucus, the Congressional Black Caucus, and patient advocacy organizations like NephCure Kidney International as well as 40 other stakeholders participated in the first ever Rare Kidney Disease Policy Roundtable to identify policy recommendations to advance ideas to treat rare kidney disease.

At the American Society of Nephrology's October 2020 Kidney Week, the roundtable released its recommendations in a paper titled, ``We Deserve Better: Revolutionizing Rare Kidney Disease,'' which outlined essential policy recommendations to catalyze and marshal developments in the rare kidney disease space. It was a seminal document for people living with lgA nephropathy and Focal Segmental Glomerular Sclerosis (FSGS) rare kidney diseases that particularly affect Asian Americans and African Americans respectively. The paper had five key policy findings: 1) increased rare kidney disease awareness is essential and should be part of our national strategy to reduce kidney failure, 2) significant reductions in time to diagnosis for rare kidney disease patients would yield dramatic improvements in health outcomes, 3) identifying and meeting the needs of communities of color living with rare kidney disease is a necessity, 4) healthcare providers, including nephrologists, need ore education on treating and serving patients with rare kidney disease and 5) access to specialists nd patient advocates will help preserve kidney function. People in Illinois living with lgAN or FSGS know how important it is to address all these critical areas.

For decades, there was only a single FDA-approved treatment for lgA nephropathy. However, in the last decade, a more efficient regulatory path has paved the way for the development of pioneering therapies, ushering in a new era of innovation in rare kidney diseases, resulting in over 30 clinical trials currently underway with some therapies already approved and many showing promising results. In an August 2022 article, STAT, a health-oriented website published by Boston Globe Media, quoted an lgAN researcher characterizing this moment as ``a golden age of lgA nephropathy.'' Clearly, the research and development in this space is encouraging and the future for lgA nephropathy patients is bright.

Mr. Speaker, I hope everyone will take a moment to recognize lgAN Awareness Day on May 14th, and I want to acknowledge the families in my district and throughout Illinois who are living with lgAN and other rare kidney diseases, and to let them know that help is on the way.

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