[Congressional Record Volume 168, Number 82 (Friday, May 13, 2022)]
[Extensions of Remarks]
[Page E500]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                    RECOGNIZING IGA NEPHROPATHY DAY

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                             HON. TED LIEU

                             of california

                    in the house of representatives

                          Friday, May 13, 2022

  Mr. LIEU. Madam Speaker, I rise to recognize May 14th as IgA 
Nephropathy Awareness Day. IgA Nephropathy (IgAN) is a rare autoimmune 
disease that causes a person's immune system to attack the kidneys. 
Fewer than 200,000 people are diagnosed with this incurable condition 
per year in the United States, yet it is one of the most common 
diseases affecting the kidneys other than those caused by high blood 
pressure or diabetes.
  IgA Nephropathy is a condition in which an abnormal build-up of a 
protein called immunoglobulin A (IgA) causes the immune system to 
attack the kidneys, often leading to kidney damage and failure. The 
cause of abnormal IgA build-up in patients with this condition is 
unclear, though it is likely due in part to genetic factors. While IgA 
Nephropathy impacts women and men of every ethnicity, it is most 
prevalent in those from Asian backgrounds. In fact, kidney failure 
among Asian Americans is 5 times more likely to be the result of IgA 
Nephropathy than among Caucasians, and 15 times more likely compared to 
African Americans.
  Although IgA Nephropathy can develop at any age, the National 
Organization for Rare Disorders (NORD) notes that it most often affects 
younger Americans, usually appearing between the teen years and the 
late 30s. Furthermore, according to the IgAN Foundation, as many as 
half of those affected by IgAN will develop end-stage kidney disease 
and eventually require dialysis or a kidney transplant.
  As is often the case with rare diseases, the diagnostic journey to 
IgA Nephropathy tends to be long. There are usually little or no 
immediate signs and symptoms. The disease causes inflammation that can 
trigger complications, including high blood pressure and chronic kidney 
disease. In fact, many patients are not diagnosed until they show some 
of these complications and blood or protein in the urine.
  IgA Nephropathy was first identified in 1968, and it is viewed as a 
condition without a cure. While some patients have been able to delay 
kidney decline and failure through lifestyle changes, supplements, and 
medication, many others have seen no effective treatments whatsoever.
  We believe this is about to change. The FDA approved the first-ever 
medication for IgA Nephropathy in late 2021. Another drug is currently 
under FDA review with more therapies in phase 2 and 3 trials. 
Additionally, a growing number of clinical trials are underway.
  These advancements in IgA Nephropathy treatment provide hope for so 
many patients struggling with this chronic disease. It's important we 
help raise awareness of this condition to counter the fear and 
uncertainty that can come with an IgA Nephropathy diagnosis. More needs 
to be done to develop the means for patients to manage their conditions 
and live normal lives even while dealing with this cruel disease.
  I also want to salute by name the IgA Nephropathy Foundation. On May 
14, 2004, Bonnie Schneider and her husband established the IgA 
Nephropathy Foundation from their home. Eddie, their 13-year-old son, 
had been recently diagnosed with the condition, and they saw firsthand 
the unmet need for answers, resources, and a supportive community for 
individuals with IgAN and their families.
  In addition, I am proud to say that California's 33rd Congressional 
District is fully engaged in this effort, as IgA Nephropathy Foundation 
Board Secretary Mary Schneider is from Venice in my district.
  So on May 14th, the 18th anniversary of its founding, the IgA 
Nephropathy Foundation and the entire IgAN community and partners will 
come together to raise awareness about this disease, while celebrating 
the strength of those warriors who battle it every day. Their hope is 
that this important day will drive people to check their risk and 
recognize symptoms, improve awareness among primary care physicians, 
build a stronger network of support for patients, and encourage further 
research to find effective therapies and, one day, a cure.
  Madam Speaker, I want to thank the IgA Nephropathy Foundation for 
creating this important day of awareness. I am proud to stand with the 
brave Americans and their families who must battle this disease and who 
continue in their efforts to educate the public on IgA Nephropathy. On 
May 14th, we honor them and all their efforts as we recognize IgA 
Nephropathy Awareness Day.

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