American Kidney Fund's Rare Kidney Disease Advocacy Day on Capitol Hill Seeks to Gather Support for Legislation that will Increase Awareness and Treatment of Rare Kidney Diseases

ROCKVILLE, Md. (Sept. 18, 2024) – Members of AKF's Rare Kidney Disease Action Network (RKDAN) and health care professionals will visit Capitol Hill in Washington, D.C. today to meet with lawmakers and request their support for two bills that, if passed, would significantly improve research, treatment and diagnosis of rare kidney diseases.

AKF's RKDAN was launched earlier this year to advocate on behalf of the rare kidney disease community. Its membership consists of people living with many rare and genetic kidney diseases including IgA nephropathy (IgAN), focal segmental glomerulosclerosis (FSGS) and APOL1-mediated kidney disease (AMKD). Members connect with each other to learn about policy issues impacting kidney care, receive training on how to educate lawmakers and the public about kidney disease and share their kidney journeys. 

In their meetings on Capitol Hill, advocates will call for congressional support of the New Era of Preventing End-Stage Kidney Disease Act (H.R. 6790), which would improve, develop and deliver health care services to people with rare kidney disease as well as create the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Centers of Excellence on Rare Kidney Disease Research. The Centers would study the causes, diagnosis, progression and treatment of rare kidney diseases and increase public awareness of rare kidney disease, particularly in rural and underserved communities. In addition, the bill includes a provision that requires the Secretary of Health and Human Services to conduct a study and provide a report to Congress on testing, preventative care, precision medicine and treatment for rare kidney disease.

Advocates will also urge members of Congress to support the Access to Genetic Counselors Act (H.R. 3876/S. 2323) – legislation that would improve patient access to genetic counselors by requiring Medicare to reimburse them directly. Genetic counselors are trained and certified to interpret complex genetic information, and they play a critical role in helping identify why people get chronic kidney disease (CKD). Currently, Medicare does not recognize genetic counselors as health care providers, which can leave patients without access to a professional who can help them understand how their genetic makeup could impact their health or influence their choice of treatments. 

"Chronic kidney disease is one of the leading causes of morbidity and mortality in our country, yet widespread knowledge and awareness among health care providers about kidney disease – particularly rare kidney disease – is lacking among many clinicians," said LaVarne A. Burton, AKF President and CEO. "By passing these bills, Congress will make critical investments in programs, trainings and resources for health care providers to expand their understanding of rare kidney disease, which will help them provide more personalized treatments and improve quality of life for people living with rare kidney disease or kidney disease of an unknown origin. We're honored to work alongside members of AKF's Rare Kidney Disease Action Network to push for passage of these bills that would result in substantial policy improvements on behalf of the kidney community."

A survey administered by AKF in 2022 that examined barriers and opportunities among health care providers to provide patients with a timely kidney disease diagnosis showed that primary care teams are significantly less aware of several kidney conditions than are nephrologists, with rare kidney diseases like FSGS and IgAN having the greatest discrepancies in awareness levels. Genetic testing is an important diagnostic tool for rare kidney disease; however, awareness of this testing is low among primary care physicians, nurse practitioners and physician assistants.  

"Rare kidney disease has had a substantial impact on my life and the lives of so many people," said Kathy Mitchell, a member of the RKDAN who lives with IgAN. "I'm proud to be on Capitol Hill today to educate our elected officials about this important issue. Our stories and experiences matter, and people with kidney disease must make their voices heard if we want to move the needle in the right direction on research and prevention, as well as improve the lives of people with rare kidney disease."   

AKF is grateful to the sponsors of the RKDAN whose support helps make this event possible: Novartis Pharmaceuticals Corporation, Otsuka America Pharmaceutical, Inc. and Travere Therapeutics.