ROCKVILLE, Md. (Sept. 21, 2023) – Patients and health care professionals who are members of AKF's Unknown Causes of Kidney Disease (UCKD) Coalition will meet with lawmakers on Capitol Hill in Washington, DC today to urge them to support legislation that will improve the diagnosis of rare kidney diseases.
AKF's UCKD Coalition comprises 15 organizations and individuals united in their commitment to support policies and actions that will help identify kidney diseases of unknown origin. The coalition arose out of AKF's UCKD Project, which works to improve understanding of how undiagnosed or misdiagnosed causes of kidney disease directly impact patient care and outcomes.
The UCKD Coalition members who are taking part are people with rare kidney diseases such as focal segmental glomerulosclerosis (FSGS) and immunoglobin A nephropathy (IgAN). This is the UCKD Coalition's first event on Capitol Hill.
Participants will ask lawmakers to support the upcoming New Era for Preventing End-Stage Kidney Disease Act, which is expected to be introduced in the House of Representatives in the next few weeks. The bipartisan legislation will aim to improve understanding and diagnosis of rare kidney diseases by creating the National Institute of Diabetes and Digestive and Kidney Diseases Centers of Excellence on Rare Kidney Disease Research. The Centers will conduct research on the origins, cause, symptoms, identification, progression and treatment of rare kidney diseases and will increase public awareness of rare kidney diseases, particularly in rural and underserved communities.
The bill will also include 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, with respect to rare kidney disease. In addition, the bill will expand funding for nephrology fellowships, with the goal of increasing the provider's knowledge of rare kidney disease in underserved communities.
"In order for people with kidney diseases to receive the best care possible, it must be tailored to their unique needs, and health care providers must have the tools and knowledge they need to make informed kidney disease diagnoses," said LaVarne A. Burton, AKF President and CEO. "Unfortunately, there is still so much to learn, including the ability to identify biomarkers and trace possible genetic causes. In visiting Capitol Hill, the UCKD Coalition is giving members of Congress an important opportunity to hear directly from advocates who work on expanding this knowledge base. Patients with rare kidney diseases who will be impacted by this legislation and the decisions these legislators make will be able to make their voices heard."
In a survey released by AKF in 2022 that examined barriers and opportunities among health care providers to provide patients with a timely kidney disease diagnosis, health care providers said they estimated that 15% of their patients have kidney disease with no known cause.
The survey also 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. While genetic testing is an important diagnostic tool, awareness of this testing for rare kidney diseases is low among primary care physicians, nurse practitioners and physician assistants.
"Rare kidney disease advocacy is important to me because I need to spread awareness," said Imani Mintz, a patient advocate with nephrotic syndrome. "I hope to get my nephrotic syndrome testimony out there and heard. I truly want Congress to step up and hear our fight, our history and our strength. We need resources, funding and education for a better future for myself and others."
AKF is grateful to its corporate sponsors whose support makes this event and the UCKD Project possible: Title Sponsor Novartis; Leadership Sponsors Otsuka America Pharmaceutical, Inc. and Vertex Pharmaceuticals Inc., and Champion Sponsors Alexion, AstraZeneca Rare Disease, Natera, Sanofi and Travere Therapeutics.
About the American Kidney Fund
The American Kidney Fund (AKF) fights kidney disease on all fronts as the nation’s leading kidney nonprofit. AKF works on behalf of the 37 million Americans living with kidney disease, and the millions more at risk, with an unmatched scope of programs that support people wherever they are in their fight against kidney disease—from prevention through transplant. With programs that address early detection, disease management, financial assistance, clinical research, innovation and advocacy, no kidney organization impacts more lives than AKF. One of the nation’s top-rated nonprofits, AKF invests 97 cents of every donated dollar in programs, earning the highest 4-Star rating from Charity Navigator for 20 years in a row as well as the Platinum Seal of Transparency from Candid, formerly GuideStar.