[Congressional Record Volume 170, Number 83 (Tuesday, May 14, 2024)]
[Extensions of Remarks]
[Pages E489-E490]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                    RECOGNIZING IgA NEPHROPATHY DAY

                                 ______
                                 

                             HON. TED LIEU

                             of california

                    in the house of representatives

                         Tuesday, May 14, 2024

  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

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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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