[Congressional Record Volume 170, Number 84 (Wednesday, May 15, 2024)]
[Extensions of Remarks]
[Page E504]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




               RECOGNIZING IgA NEPHROPATHY AWARENESS DAY

                                 ______
                                 

                          HON. MICHELLE STEEL

                             of california

                    in the house of representatives

                        Wednesday, May 15, 2024

  Mrs. STEEL. Mr. Speaker, I rise to recognize IgA Nephropathy 
Awareness Day.
  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 
deposits of IgA cause a breakdown of the normal filtering mechanisms in 
the kidney, known as the glomeruli. Genetic factors play a role in this 
condition, and unfortunately it usually affects people in their 20s and 
30s--often right when they want to make decisions on starting a family.
  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.
  IgAN is the most common form of glomerulonephritis, which is the 
leading cause of kidney disease after diabetes and hypertension. 
Unfortunately, there are usually little or no immediate signs and 
symptoms of IgAN and patients are often not diagnosed until their 
kidneys are already damaged, or they ``crash into dialysis'' in an 
emergency room. About half of those affected by IgAN will go on to 
develop end-stage kidney disease (ESKD) which leads to dialysis, 
transplant, or death.
  In the U.S. there are about 150,000 people living with IgAN, and 
almost 40-50 percent of those cases affect Asian Americans. Last year, 
a Congressional briefing took place among Asian American members and 
staff regarding the impact of IgAN. At that time, Dr. Fahmeeda Kamal 
from Stanford Medicine, Holly Bode from the American Kidney Fund, and 
Dr. Eric Sid from the National Center for Advancing Translational 
Sciences (NCATS) briefed about 30 staff on the current and future new 
era of kidney health. It is my understanding that a broad cross-section 
of stakeholders recently urged the Biden Administration to take action 
on rare kidney diseases, including IgAN, to raise awareness and improve 
outcomes. I look forward to hearing their plans, as to date, I have not 
seen any.
  Current treatments, even one which is non-immunosuppressive, are 
having an enormous impact on patients who can get access to them and 
given new hope patients are taking new approaches to their health. We 
saw one study which shows one novel therapy could delay the time from 
diagnosis to dialysis by almost 11 years. Imagine a couple trying to 
start a family which has 11 more years of improved quality of life, 
rather than slowing sliding into dialysis or transplant. With over 60 
new therapies under development for a range of rare kidney diseases, 
including more IgAN treatments, the future is bright for families which 
are facing this challenge.
  I once again want to thank the IgA Nephropathy Foundation for all 
their work and note that 2024 marks their 20th anniversary. It all 
began, like so many rare disease patients' groups, when a mom (Bonnie 
Schneider) wanted to make sure her son (Eddie) had a better life than 
the one she was told he would have.
  Congratulations to Bonnie, Eddie, and everyone at the IgAN Foundation 
on this special occasion during a celebratory year. That is why we 
honor all families facing this challenging rare kidney disease and 
recognize IgA Nephropathy Awareness Day.

                          ____________________