[Congressional Record Volume 169, Number 81 (Monday, May 15, 2023)]
[Extensions of Remarks]
[Page E437]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




 RECOGNIZING MAY 14TH AS IMMUNOGLOBULIN A NEPHROPATHY (lgAN) AWARENESS 
                                  DAY

                                 ______
                                 

                          HON. DANNY K. DAVIS

                              of illinois

                    in the house of representatives

                          Monday, May 15, 2023

  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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