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Floor Speech

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Mr. LIEU. Mr. Speaker, I rise to again recognize May 14th as IgA Nephropathy Awareness Day. This year, I'd also like to recognize that 2024 represents the IgA Nephropathy Foundation's 20th anniversary. For twenty years, this organization has worked on behalf of all families affected by IgA Nephropathy (IgAN), a rare genetic autoimmune disease which affects over 150,000 people a year in the United States.

IgAN is the most common form of glomerulonephritis, which is the leading cause of kidney disease after diabetes and hypertension. It is particularly devastating because while it can present at any age, if most often affects younger Americans in their 20s and 30s when many are considering starting a family. About half of those affected by IgAN will go on to develop end-stage kidney disease (ESKD) which leads to dialysis, transplant, or death. What makes IgAN particularly insidious is that it can recur in a transplanted kidney. Unfortunately, there are usually little or no immediate signs and symptoms and patients are often not diagnosed until their kidneys are already damaged, or they ``crash into dialysis'' in an emergency room.

This year, I include in the Record a letter which was sent to the Department of Health and Human Services regarding the impact of rare kidney disease as a health equity issue for the Asian American communities. The letter, which was signed by twelve organizations ranging from rare kidney disease patient groups, national AANHPI organizations, national nephrology foundations, and key healthcare providers across the country, urged raising awareness and improving outcomes in rare kidney disease in the disproportionately impact Asian American, Native Hawaiian, and Pacific Islander Communities. Asian populations have the higher proportion of IgAN at 40-50 percent. This powerful letter cites that Asian Americans are at several times higher risk of IgAN than white Americans and is a significant driver of ESKD. The letter also calls attention to successful rare kidney disease screening programs used in other countries which have reduced the rates of ESKD for people under 20 by about 50 percent. Programs show that early intervention and screening can have a big impact.

As I noted last year, novel therapies to treat IgAN have been recently approved and it is my understanding that numerous clinical trials are underway with more therapies are on track for FDA review later this year and 2025. These therapies give families hope and are already helping promote kidney health and delay the progression to dialysis or transplant for thousands of people.

I once again want to thank the IgA Nephropathy Foundation and note that Mary Schneider from Venice in my district remains a Board member of this outstanding organization. I understand that the IgAN Foundation is hosting an Advocacy Day this year, and hope that it is a major success. On this day, May 14, 2024, we honor all families facing this challenging disease and recognize IgA Nephropathy Awareness Day. April 12, 2024. Re Request to Raise Awareness and Improve Outcomes for Rare Kidney Disease in AA and NHPI Communities. Hon. Secretary Xavier Becerra, Secretary, U.S. Department of Health and Human Services, Washington, DC.

Dear Secretary Becerra: We are writing to urge you to take action beginning this May to address the high rates of rare kidney diseases (RKD), including IgA Nephropathy (IgAN), as a significant health equity challenge for the Asian American, Native Hawaiian, and Pacific Islander (AA and NHPI) communities in the United States.

We recognize and appreciate that the Biden Administration has placed equity and the needs of underserved communities at the center of all of its efforts, including at HHS Given your role as Co-Chair of the President's Advisory Commission on Asian Americans, Native Hawaiians, and Pacific Islanders, we wanted to emphasize the opportunities presented by the rapidly changing treatment and care paradigm in RKD, including IgAN, which has the potential to improve outcomes for patients, particularly within the AA and NEIPI communities. Taking action now can ensure that the AA and NHPI communities are not left behind as what has been called a ``golden age'' of research in RKD begins to yield advances in care and treatment, while also preventing significant costs for American's healthcare system, including Medicare and Medicaid.

Asian Americans are at several times higher risk of IgAN than white Americans. In one global study, among patients who had renal biopsies with glomerulonephritis--the most common cause of kidney disease in the United States following hypertension and diabetes--Asian populations have the highest proportion of IgAN, at 40-50 percents. In chronic kidney disease, Asian patients have both worse prognosis than white patients and increased risk of progression to end-stage renal disease (ESRD).

While it is a rare disease in the United States, IgAN is the most common form of chronic glomerulonephritis, a significant driver of ESRD. IgAN can be especially devastating because onset often begins when patients are in their twenties or thirties, potentially leading to kidney failure much earlier in life than other causes of ESRD.

Thankfully, we now have effective tools to deploy, including cost-effective urinalysis and two new Food and Drug Administration-approved approved therapies to address IgAN, with over 60 more clinical trials underway in IgAN, FSGS, C3G, Minimal Change Disease, and others.

However, many barriers to care remain for AA and NHPI communities, from lack of patient and provider awareness of RKD and kidney disease generally, to cultural and linguistic barriers unique to the AA and NHPI communities. Evidence shows that interventions can be cost-effective and transformative, with a recent paper showing a universal urinalysis program in Japan reduced ESRD rates among people under 20 by nearly 50 percent.

We urge you to increase awareness of rare kidney diseases, including IgAN, as a health equity challenge for the AA and NHPI communities, and to take further steps to mitigate current barriers to screening, diagnosis, and treatment. The upcoming Asian American and Pacific Islander Heritage Month in May and IgAN Awareness Day on May 14 represent an opportunity to initiate these critical efforts.

We look forward to partnering with you to improve the health and well-being of the AA and NHPI communities and tackling the challenge of RKD together. Sincerely,

Juliet K. Choi, President & CEO, Asian and Pacific Islander American Health Forum.

Yanlin Wang, M.D., Ph.D., FASN, President, Chinese American Society of Nephrology.

Bonnie Schneider, Founder & Executive Director, IgAN Foundation.

Josh Tarnoff, CEO, NephCure Kidney International.

Raymond Hsu, MD, MAS, School of Medicine, University of California-San Francisco.

Kevin Longino, CEO, National Kidney Foundation.

Jenifer Ngo Waldrop, Executive Director, Rare Disease Diversity Coalition.

Fahmeedah Kamal, MD, Clinical Assistant Professor, Stanford University Medicine.

LaVarne Burton, President and CEO, American Kidney Fund.

Li-Li Hsiao, MD, Ph.D., Founder, Kidney Disease Screening and Awareness Program (KDSAP), Harvard Medical School.

Shikha Wadhwani, MD, MS, FASN, Assistant Professor of Medicine, Northwestern University.

Gary A. Puckrein, Ph.D., President and Chief Executive Officer, National Minority Quality Forum.

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