Congressional Briefing Wrap-up: Rare Kidney Disease: Helping Patients Find Answers

As part of our 2024 Kidney Action Week™ (KAW), the American Kidney Fund's (AKF) Office of Government Affairs hosted three sessions on March 19, KAW's Community Action Day. In addition to Federal Government 101: An Introduction to the Legislative Branch and What's Happening in the States, we hosted a virtual Congressional briefing, Rare Kidney Disease: Helping Patients Find Answers.  

AKF's President and CEO LaVarne A. Burton opened the session, noting that there are about 150 rare kidney diseases and no FDA-approved treatments for most of them. These treatment barriers, coupled with a lack of awareness and education about rare kidney disease, often cause a delay in diagnosis. This delay can result in a rapid decline in kidney function and lead to kidney failure, where the only treatment options are dialysis or a transplant. 

To better address rare kidney disease in the United States, we need more research, public awareness, earlier diagnosis, access to genetic testing and counseling, additional treatments and improved understanding of why rates of kidney disease are higher in underserved communities, Ms. Burton said. These steps would help alleviate the burden of rare kidney disease on individuals and help defray the costs of dialysis and kidney care in the Medicare program. 

Our first speaker was Rep. Gus Bilirakis of Florida, who is the co-chair of the Rare Disease Congressional Caucus. In a special recorded message, Rep. Bilirakis spoke about H.R. 6790, the New Era for Preventing End-Stage Kidney Disease Act, which he recently introduced and would fund research on rare kidney disease, expand training for primary care providers and nephrology fellowships and raise public awareness of rare kidney disease. 

Our second speaker was Lorelie Yost, an AKF Ambassador, rare kidney disease patient and registered nurse. Lorelie discussed being diagnosed with IgA nephropathy, also known as IgAN, after a routine urinalysis. As time went by, her kidney function gradually declined, and she was placed on the transplant waiting list. Finally, in 2020, Lorelie received a life-saving kidney from a deceased donor. In her discussion, she emphasized the importance of being informed and managing your health.

The next speaker was Dr. Julie Wright-Nunes, an associate professor in the department of internal medicine, division of nephrology at the University of Michigan. Dr. Wright-Nunes spoke about the challenges of diagnosing and treating rare kidney disease. She also explained the complexities of rare kidney disease, the need for more research funding and unified approaches for care, and appropriate testing and counseling for all patients.

Our fourth speaker was Gillian Hooker, concert genetics chief scientific officer and the past president of the National Society of Genetic Counselors. She serves as an adjunct associate professor at the Vanderbilt University Medical Center and leads the research arm of the Vanderbilt Genetic Counseling Training Program. Gillian gave a brief overview of H.R. 3786/S. 2323, the Access to Genetic Counselor Services Act, a bill that would recognize genetic counselors as health care practitioners and allow them to be directly reimbursed by Medicare. This bill would improve access to genetic counselors and ensure the appropriate utilization of genetic testing and better health outcomes.

Our final speaker was Britta Dornan, executive director of strategic relations at NephCure. Britta leads the strategy and oversight of the organization's government advocacy programs, physician education initiatives and industry relations efforts. Britta gave an in-depth review of H.R. 6790, the New Era for Preventing End-Stage Kidney Disease Act. She explained that the legislation would provide grants to public and private nonprofit entities to establish regional centers of excellence that would research the causes, diagnosis, progression and treatment of rare kidney disease, as well as increase public awareness - particularly in rural and underserved communities - and develop clinical research resources for rare kidney disease.

During the Q&A portion of the briefing, Lorelie was asked to share her thoughts on how to improve the patient experience. She encouraged patients to be proactive in managing their rare kidney disease and emphasized the need for health care providers to give patients information about their illness. Dr. Wright-Nunes also stressed that patients should ask their nephrologists about their kidney function and how to best maintain it, and she suggested that they ask what new therapies are available for treating their rare kidney disease and explore clinical trials with their nephrologist. 

If you missed the briefing or would like to watch the full session, you can watch it here.