[Congressional Record Volume 169, Number 81 (Monday, May 15, 2023)]
[Extensions of Remarks]
[Page E435]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]





                 HONORING IGA NEPHROPATHY AWARENESS DAY

                                 ______
                                 

                        HON. MICHAEL C. BURGESS

                                of texas

                    in the house of representatives

                          Monday, May 15, 2023

  Mr. BURGESS. Mr. Speaker, I rise to recognize May 14th as IgA 
Nephropathy Awareness Day. IgA Nephropathy is a rare autoimmune disease 
that causes a person's immune system to attack the kidneys. In the 
United States, fewer than 200,000 people are diagnosed with this 
incurable condition per year. Yet, it is one of the most common 
diseases affecting the kidneys other than those caused by high blood 
pressure or diabetes.
  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 IgA Nephropathy Foundation, as 
many as half of those affected by IgA Nephropathy will develop end-
stage kidney disease and eventually require dialysis or a kidney 
transplant. Sadly, IgA Nephropathy can recur in the transplanted 
kidney, and after a period of increased quality of life, families find 
themselves in yet another familiar battle.
  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.
  This is all beginning to change, and IgA Nephropathy patients finally 
have the tangible hope of new treatments here today, and a growing 
number of clinical trials are underway. Mr. Speaker, this new hope 
results: from a combination of a number of things, including the 
renewed medical cures innovation environment Congress helped foster on 
a bipartisan basis with the drafting and enacting of the 21st Century 
Cures Act. Rare kidney diseases, in particular had been an area of 
little to no development in promising treatments for those suffering 
from these devastating diseases. The FDA approved the first-ever 
medication for IgA Nephropathy in late 2021, and progress is picking up 
even more speed, as 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 on 
the horizon, are providing lifechanging care options 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.
  IgA Nephropathy May 14 is the 19th anniversary of its founding, the 
IgA Nephropathy Foundation. On May 14th, 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 IgA 
Nephropathy and their families.
  Yesterday, the IgA Nephropathy community and partners came together 
to raise awareness about this disease while celebrating the strength of 
the patients and caregivers who battle this daily. Their hope is that 
this important day will drive people to check their risk and recognize 
symptoms, including getting routine urinalysis, improve awareness among 
primary care physicians, build a more robust network of support for 
patients, and encourage further research to build on the new therapies 
helping to improve the lives of those battling this disease--and to one 
day find a cure. As a Texan, I know that it is not our challenges that 
define us but rather how we rise above them. The IgA Nephropathy 
Foundation and the IgA Nephropathy community are working to do just 
that.
  Mr. Speaker, I want to thank the IgA Nephropathy Foundation for 
creating this important opportunity to improve awareness. Today, I 
stand with the many Americans and their families, doctors, and other 
caregivers who must battle this disease and continue educating the 
public and partnering with those working on new treatments. We honor 
them all this IgA Nephropathy Awareness Day.

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