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…
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.