Recognizing Iga Nephropathy Day

Floor Speech

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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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