[Congressional Record Volume 169, Number 81 (Monday, May 15, 2023)]
[Extensions of Remarks]
[Page E439]
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

                          Monday, May 15, 2023

  Mr. LIEU. Mr. 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 characterized by an abnormal build-up 
of a protein called immunoglobulin A (IgA), which causes the immune 
system to attack the kidneys, often leading to kidney damage or 
failure. The deposits of IgA cause a breakdown of the normal filtering 
mechanisms in the kidney, leading to hematuria, proteinuria, and a 
progressive loss of kidney function. The cause of abnormal IgA build-up 
in patients with this condition is unclear, although genetic factors 
likely play a role. While IgA Nephropathy impacts women and men of 
every ethnicity, it is most prevalent in those of Asian ancestry. 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. It is fitting that IgAN Awareness 
Day occurs during Asian American, Native Hawaiian, and Pacific Islander 
Heritage Month.
  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. Tragically, 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. Sadly, IgAN can 
recur in the transplanted kidney and, after a period, of increased 
quality of life families find themselves in yet another familiar 
battle.
  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 for almost 
four decades.
  However, this is all beginning to change, and IgAN patients finally 
have the tangible hope of new treatments here today. The number of 
clinical trials is growing, and the FDA approved the first-ever 
medication for IgA Nephropathy in late-2021. Earlier this year, the FDA 
approved another new drug therapy which proved to demonstrate rapid and 
sustained proteinuria reduction--a key to maintaining healthy 
functioning of the kidneys.
  These advancements in IgA Nephropathy treatment and hope for more 
therapies on the horizon provide life-changing options for patients 
struggling with this chronic disease. It's important we raise awareness 
of this condition to counter the fear and uncertainty that can come 
with an IgA Nephropathy diagnosis. More must 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.
  In addition, I am proud to say that California's 36th 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 19th 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 also 
celebrating the strength of the patients and caregivers who battle the 
condition every day. Their hope is that this important day will drive 
people to assess their risks and recognize symptoms. With improved 
awareness among physicians, a strong network of support for patients, 
and further research to build on existing therapies, we can improve the 
lives of IgA Nephropathy patients--and one day find a cure.
  Mr. 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 once again 
recognize IgA Nephropathy Awareness Day.

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